models of care to better meet patient needs gaps, needs and opportunities - a patient...
TRANSCRIPT
Models of care to better meet patient needs
Gaps needs and opportunities -
a patient perspective
Christine JefferyExecutive Officer
The Immune Deficiencies Foundation of Australia Limited (IDFA)
Board Director and TreasurerInternational Primary Immunodeficiency Patient
Organisation (IPOPI)
Primary Immune Deficiency Diseases (PIDs) are caused
by defects in the genes that control the immune system
so people with PIDs are born missing some or all of the
parts of the immune system
The World Health Organisation (WHO) recognises
more than 240 PIDs
There is no cure for the majority of PIDs
PIDs can be mild severe and fatal
Many people with PIDs also have other comorbidities
What is a primary immune deficiency The ldquobubble boyrdquo disease
David Vetter the ldquobubble boyrdquo had Severe Combined Immune Deficiency (SCID)
This is fatal without a Haematopoietic Stem Cell Transplantation (HSCT)
Is the peak patient organisation for people affected by PIDs in Australia
Is the 4th largest patient organisation for PIDs in the world
Brings the PID community together by providing free education resources practical advice emotional support conferences events and links members via social media
Advocates for members to ensure accurate diagnosis and optimal treatment to provide a better quality of life
Does not receive funding from the Federal or State governments
The Immune Deficiencies Foundation of Australia
European model of care PID principals of care
This includes1 The role of specialised centres2 The importance of national and international registries3 The need for international collaboration and research4 The role of patient organisations5 Management and treatment options for PIDs6 Managing PID diagnosis and care in all countries
Frontiers in immunology Primary immune deficiencies principles of care Helen Chapel 1 Johan Prevot 2 Hubert Bobby Gaspar 3Teresa Espantildeol 4 Francisco A Bonilla5 Leire Solis2 Josina Drabwell 2 andThe Editorial Board for Working Party on Principles of Care at IPOPI dagger 1 University of Oxford Oxford UK 2 International Patient Organisation for Primary Immunodeficiencies (IPOPI) Downderry UK 3 University College London Institute of Child Health London UK 4 Hospital General Vall drsquoHebron Barcelona Spain 5 Boston Childrenrsquos Hospital Harvard Medical School Boston MA USA 15 December 2014 Information supplied from 30 countries
United Kingdom model of care PID Patient centred chronic care management
The emphasis is on1 The patient as an ldquoexpertrdquo on their disease2 Healthcare teams manage the disease and comorbidities3 Self administered home therapy4 Disease management falls within the framework of other chronic disease management programs5 ldquoPrimary practicerdquo where nurse case managers or immunology centres assist the patient through education support and facilitate access to community resources
NCBI Resources Primary immunodeficiency disease a model for case management of chronic diseases Burton J1 Murphy E Riley P Author information1National Health Service Oxford England janetburtonorhnhsuk
Australian model of care (Clinical professionals) Evidence based model of care Australasian Society of Clinical Immunology and Allergy (ASCIA)
For a patient with a PID the diagnosis treatment and management is by an immunologist
Most PIDs cannot be cured Some require urgent Haematopoietic Stem Cell Transplantation (HSCT) or the outcome is fatal
PIDs need to be managed by an ImmunologistIDFA is affiliated with ASCIA Immunologists and
nurses
6 PID Community
5 Patient Outcomes
4 Organisational (IDFA) commitment
3 PatientCarer Individual commitment
2 Patient Advocacy
1 Patient Needs
Australian model of care (patient organisation) patient centred model of care
IDFArsquos model of care is directed at the national PID community It has 6 focus areas and refers to 3 cohorts of patients The patient centred model of care changes to reflect the needs of each cohort (child adolescent and adult)
1 Child2 Adolescent3 Adult
Example Immunoglobulin treatment methods
1 IVIg in hospital
2 IVIg at home ndashonly a few patients in Australia
Images with permission from Noelene Davies Transfusion Nurse ARCBS presented at IDFA 2013 National Conference
3 SCIg at home 1-3 times a week SCIg assists in maintaining trough levels therefore improving patient health and reducing infections and hospitalisation
This consultant also trains other nurses eg Melbourne has a nurse 25 days per week to train and monitor patients at the Royal Childrenrsquos Hospital Royal Melbourne Alfred and Monash Medical Centre and a few patients in Tasmania
At the Childrenrsquos Hospital Westmead NSW the Immunologist trains parents in the use of SCIg
IDFA endorses patient choice of treatment in consultation with their Immunologist Question If you had the choice to have your treatment at home helliphellip would you
South Australia is the only State with a full time immunology advanced clinical practice consultant (innovative approach for Australia) who trains and monitors patients in the use of SCIg and home IVIg
Example of IDFArsquos model of care Patient choice of Immunoglobulin replacement therapy intravenous immunoglobulin (IVIg) or subcutaneous immunoglobulin (SCIg)
3 Patient commitment
5 Patient outcomes
4 Organisational commitment
6 PID community
2 Patient advocacy
1 Patient needs
IDFA in conjunction with ASCIA campaign for SCIg approval by
NBA
Improved quality of life(better trough levels home
based therapy)
NBA approved SCIg as a treatment choice
IDFA commits to social amp economic inclusion + global information ndash (SCIg used
for 20 years in Europe)
Patient must comply with treatment regime
Choice of Ig treatment options
1 Patient needsPatient Gapsneeds Narrowing the gap - opportunities
A correct diagnosis amp management by Clinician (validation of symptoms)
IDFA continues to raise awareness in the medical community about PIDs Early diagnosis and treatment improves quality of life
Access to optimal treatment options As a ldquodevelopedrdquo nation Australia needs to reduce ldquored taperdquo for treatment options
Education and resources to understand their disease
If Immunologists and transfusion units gave patients IDFA contact details they could access resources and other PID patients to help their journey
Loneliness isolation emotionalsupport communication with other PID patients
Patient organisations can provide emotional support through the PID buddies and mentors system but there needs to be access for patients to other allied health services (psychological physio pumps consumables) that are free
GP Medical Hospital education about condition (frequent hospitalisation)
PID patients are susceptible to infections (need isolation) PID patients need a means of identification about their disease eg an ID card number code or mobile app - patient protective isolation especially for emergency doctors
Quality of life QOL is improved by access to diagnosis optimal medical treatment and care information practical advice coping skills emotional support participating in events and being part of the PID community
2 Patient AdvocacyGapsneeds Narrowing the gap - opportunities
Patient needs ldquotimerdquo to challenge the system for government benefits and services also a clear process to access to the health systemFinancial Government CentrelinkSupport chronic care plans pensions carers allowance medicare allied health services
1 There is general confusion about how the health system functions2 Patient uncertainty in completing forms and rejection 3 Govt support is needed for access to care4 Govt support is needed to identify and process assessments for
PIDRD patients in a way that is easily accessible for patients eg an identified numbercode template could be made so patients donrsquot have the demoralising process of pension rejection several times
5 IDFARD has links on their websites for patients to access the health system
Patients need an allied care health package with the above information
National plan for RD could streamline this process by code or appIf this process is streamlined patients who have had the trauma of new diagnosis will not suffer further trauma financially or emotionally
Patients need advocacy and support from a patient organisation
Advocacy projects cannot proceed without human resources or fundsGovt support is needed financially for patient organisations
2 Patient AdvocacyGapsneeds Narrowing the gap - opportunities
Patients amp families need information and support
Support is based on human resources and funding Annual financial support of IDFA would ensure IDFA could produce resources and hold conferences
Patients want a choice oftreatment methods
In regard to Ig ndash patient choice for IVIg or SCIg Treatment process should be easy not complicated Need more Ig nursing practitioners to train patients for SCIg
Patients want less complicated access to hospital services
When being admitted to emergency the doctors on call have not heard of PID A patient ID card or mobile app with disease information would be handy
Lack of awareness in the medical and general community
IDFA promotes rare diseases through media platformSeek grants for World PI Week to produce a newspaper insert news event
Communication between rare disease organisations
Encourage sharing of information and models of care between rare disease groups
IDFA patients not only have a rare disease they also have severe comorbidities and complex chronic health issues
PIDs work within a framework of chronic disease managementRare Disease Health CentresClinics
2 Patient AdvocacyGapsneeds Narrowing the gap - opportunities
Transition from child to adult care
Many agree that the transition from child to adult hospitals and services represents a major gap in patient care Whatever the system is it is failing our adolescent patients This area needs addressing as it is resulting in teen non compliance with treatment resulting in hospitalisation and occasionally death Plans must be put in place for teens with PID entering the adult world Perhaps an app with appointments treatment dates etc or transition conferences where any young adult from any rare disease organisation can attend
3 Patient individual commitmentGapsneeds Narrowing the gap - opportunities
Patients need to commit to their treatment regime This is a life long process As patients are hospitalised regularly many want home based treatment options to reduce hospital admissions
More hospitals to implement SCIg More Ig nursing practioners to train patients for home treatments The implementation of SCIg is too slow Currently for patients on SCIg the patient needs to pick up monthly treatment so no saving is made in regard to travel costs for members Treatments should be accessible from the patientrsquos local hospital and a 3 monthly supply provided
Patients need economic and social inclusion Join patient organisation which provides resources education mentors buddies social support and conferences
4 Organisational commitmentGapsneeds Narrowing the gap - opportunities
Patients carers and families need economic and social inclusion
Closed Facebook pages ndash (adults and YAMS) mentors and buddies newsletters teleconferences National conferencesndash commitment to member services is dependant on human resources and funding
Patients need information and education about their disease and treatment options They are also interested in global issues and access to clinical trials nationally and internationally
Provide resources to assist with PIDs treatments researchIDFA posts all clinical trials white papers journals etc on website sign up for international information
Patients need a Support officer who is available for chats teleconferences and suggestions for practical coping skills
Due to IDFA growth there is more pressure on our PT Support Officer ldquoTalksrdquo and teleconferences are getting further behind as more staff needed - Without funding there is no member services
Patients need current PID information IDFA is associated with ASCIA and attends annual conference President of ASCIA is IDFA Board MAC Chair IDFA has a close relationship with Aust PID Clinicians and nurses
Patients are interested in global research and events
IDFA is associated with IDF (US) IDFNZ amp IPOPI Executive Officer is Treasurer of IPOPI
5 Patient outcomesGapsneeds Narrowing the gap - opportunities
Patients have high levels of stress which puts relationships at risk
Resource kits discussed with new patients can ease the stress of newly diagnosed patients and their families
Patients need to accept their diseaseEmpowering patients leads to positive emotions = improved quality of life
IDFA staff and mentors assist new patients as soon as they join The IDFA closed Facebook group are very kind and empathetic towards new members they feel they are not alone
Education and resources The provision of an IDFA member resource pack provides education and resources for new members
Access to clinical trials Clinical trials are posted in the website and on Facebook
Genetic sequencing assists future decisions Genetic testing is sought through the Immunologist
Patients want to understand their condition and identify with others
Joining the patient organisation makes them part of a community they identify with Patient organisations are only able to assist if they have adequate human andfinancial resources
6 CommunityGapsneeds Narrowing the gap - opportunities
Patients need to feel supported Joining the patient organisation makes them part of a community they identify with Patient organisations are only able to assist with human andfinancial resources No funding = no services
Patients need to feel part of a PID community where they do not feel so isolated and alone
Foster and engage a PID community where members do not feel so isolated and aloneIDFA member mantra is promoted I Donrsquot Feel Alone
Patient organisations foster a sense of community They provide advocacy and organisational commitment which plays a crucial role in patient care economic and social inclusion compliance and quality of life
If patient organisations received annual government funding this could relieve some of the burden of care placed on the health system by patientsIn Sweden at tax time 1 of taxable income (church tax) must be donated to a church or charity of their choice
PID patients need improved quality of life
Lines of communication between the evidence based model of care and the patient centred model of care are necessary for advocacy and to improve patient quality of life Currently ASCIA and IDFA commit to national advocacy campaigns where ASCIA provides evidence based support and IDFA provides patient based support
Recommendation A community focussed model of care where the patient is supported by the evidence based and the patient centred model of care and includes communication between the evidence based model of care and the patient centred model of care to improve quality of life
Specialist medical team(s)
Disease focussed specialist
Hospital treatments
Co-morbidity specialists Patient
support group
Patient needs
Global communication
Patient advocacy Patient
individual commitment
Organisational commitment
Patient outcomes
PID community
PatientMedical team(s)
Hospital medical
identification
Support Emotional financial
community
Patient support group
Transition process
Streamlined access to
Govt assistance
Access to optimal
treatmentCorrect
diagnosis
ASCIA Evidence based model of care
IDFA Patient centred model of care
Community focussed model of careimproves patients quality of life
ContactExecutive Officer Christine Jeffery
Mobile 0409 945 114
Email christinejefferyidfaorgau
A PO Box 969 Penrith NSW 2751
P 1800 100 198
W wwwidfaorgau
ACN 117 585 976
ABN 99 117 585 976
To become a member complete the membership form online httpwwwidfaorgauidfa-membership-patients-families-healthcare-professionals
Primary Immune Deficiency Diseases (PIDs) are caused
by defects in the genes that control the immune system
so people with PIDs are born missing some or all of the
parts of the immune system
The World Health Organisation (WHO) recognises
more than 240 PIDs
There is no cure for the majority of PIDs
PIDs can be mild severe and fatal
Many people with PIDs also have other comorbidities
What is a primary immune deficiency The ldquobubble boyrdquo disease
David Vetter the ldquobubble boyrdquo had Severe Combined Immune Deficiency (SCID)
This is fatal without a Haematopoietic Stem Cell Transplantation (HSCT)
Is the peak patient organisation for people affected by PIDs in Australia
Is the 4th largest patient organisation for PIDs in the world
Brings the PID community together by providing free education resources practical advice emotional support conferences events and links members via social media
Advocates for members to ensure accurate diagnosis and optimal treatment to provide a better quality of life
Does not receive funding from the Federal or State governments
The Immune Deficiencies Foundation of Australia
European model of care PID principals of care
This includes1 The role of specialised centres2 The importance of national and international registries3 The need for international collaboration and research4 The role of patient organisations5 Management and treatment options for PIDs6 Managing PID diagnosis and care in all countries
Frontiers in immunology Primary immune deficiencies principles of care Helen Chapel 1 Johan Prevot 2 Hubert Bobby Gaspar 3Teresa Espantildeol 4 Francisco A Bonilla5 Leire Solis2 Josina Drabwell 2 andThe Editorial Board for Working Party on Principles of Care at IPOPI dagger 1 University of Oxford Oxford UK 2 International Patient Organisation for Primary Immunodeficiencies (IPOPI) Downderry UK 3 University College London Institute of Child Health London UK 4 Hospital General Vall drsquoHebron Barcelona Spain 5 Boston Childrenrsquos Hospital Harvard Medical School Boston MA USA 15 December 2014 Information supplied from 30 countries
United Kingdom model of care PID Patient centred chronic care management
The emphasis is on1 The patient as an ldquoexpertrdquo on their disease2 Healthcare teams manage the disease and comorbidities3 Self administered home therapy4 Disease management falls within the framework of other chronic disease management programs5 ldquoPrimary practicerdquo where nurse case managers or immunology centres assist the patient through education support and facilitate access to community resources
NCBI Resources Primary immunodeficiency disease a model for case management of chronic diseases Burton J1 Murphy E Riley P Author information1National Health Service Oxford England janetburtonorhnhsuk
Australian model of care (Clinical professionals) Evidence based model of care Australasian Society of Clinical Immunology and Allergy (ASCIA)
For a patient with a PID the diagnosis treatment and management is by an immunologist
Most PIDs cannot be cured Some require urgent Haematopoietic Stem Cell Transplantation (HSCT) or the outcome is fatal
PIDs need to be managed by an ImmunologistIDFA is affiliated with ASCIA Immunologists and
nurses
6 PID Community
5 Patient Outcomes
4 Organisational (IDFA) commitment
3 PatientCarer Individual commitment
2 Patient Advocacy
1 Patient Needs
Australian model of care (patient organisation) patient centred model of care
IDFArsquos model of care is directed at the national PID community It has 6 focus areas and refers to 3 cohorts of patients The patient centred model of care changes to reflect the needs of each cohort (child adolescent and adult)
1 Child2 Adolescent3 Adult
Example Immunoglobulin treatment methods
1 IVIg in hospital
2 IVIg at home ndashonly a few patients in Australia
Images with permission from Noelene Davies Transfusion Nurse ARCBS presented at IDFA 2013 National Conference
3 SCIg at home 1-3 times a week SCIg assists in maintaining trough levels therefore improving patient health and reducing infections and hospitalisation
This consultant also trains other nurses eg Melbourne has a nurse 25 days per week to train and monitor patients at the Royal Childrenrsquos Hospital Royal Melbourne Alfred and Monash Medical Centre and a few patients in Tasmania
At the Childrenrsquos Hospital Westmead NSW the Immunologist trains parents in the use of SCIg
IDFA endorses patient choice of treatment in consultation with their Immunologist Question If you had the choice to have your treatment at home helliphellip would you
South Australia is the only State with a full time immunology advanced clinical practice consultant (innovative approach for Australia) who trains and monitors patients in the use of SCIg and home IVIg
Example of IDFArsquos model of care Patient choice of Immunoglobulin replacement therapy intravenous immunoglobulin (IVIg) or subcutaneous immunoglobulin (SCIg)
3 Patient commitment
5 Patient outcomes
4 Organisational commitment
6 PID community
2 Patient advocacy
1 Patient needs
IDFA in conjunction with ASCIA campaign for SCIg approval by
NBA
Improved quality of life(better trough levels home
based therapy)
NBA approved SCIg as a treatment choice
IDFA commits to social amp economic inclusion + global information ndash (SCIg used
for 20 years in Europe)
Patient must comply with treatment regime
Choice of Ig treatment options
1 Patient needsPatient Gapsneeds Narrowing the gap - opportunities
A correct diagnosis amp management by Clinician (validation of symptoms)
IDFA continues to raise awareness in the medical community about PIDs Early diagnosis and treatment improves quality of life
Access to optimal treatment options As a ldquodevelopedrdquo nation Australia needs to reduce ldquored taperdquo for treatment options
Education and resources to understand their disease
If Immunologists and transfusion units gave patients IDFA contact details they could access resources and other PID patients to help their journey
Loneliness isolation emotionalsupport communication with other PID patients
Patient organisations can provide emotional support through the PID buddies and mentors system but there needs to be access for patients to other allied health services (psychological physio pumps consumables) that are free
GP Medical Hospital education about condition (frequent hospitalisation)
PID patients are susceptible to infections (need isolation) PID patients need a means of identification about their disease eg an ID card number code or mobile app - patient protective isolation especially for emergency doctors
Quality of life QOL is improved by access to diagnosis optimal medical treatment and care information practical advice coping skills emotional support participating in events and being part of the PID community
2 Patient AdvocacyGapsneeds Narrowing the gap - opportunities
Patient needs ldquotimerdquo to challenge the system for government benefits and services also a clear process to access to the health systemFinancial Government CentrelinkSupport chronic care plans pensions carers allowance medicare allied health services
1 There is general confusion about how the health system functions2 Patient uncertainty in completing forms and rejection 3 Govt support is needed for access to care4 Govt support is needed to identify and process assessments for
PIDRD patients in a way that is easily accessible for patients eg an identified numbercode template could be made so patients donrsquot have the demoralising process of pension rejection several times
5 IDFARD has links on their websites for patients to access the health system
Patients need an allied care health package with the above information
National plan for RD could streamline this process by code or appIf this process is streamlined patients who have had the trauma of new diagnosis will not suffer further trauma financially or emotionally
Patients need advocacy and support from a patient organisation
Advocacy projects cannot proceed without human resources or fundsGovt support is needed financially for patient organisations
2 Patient AdvocacyGapsneeds Narrowing the gap - opportunities
Patients amp families need information and support
Support is based on human resources and funding Annual financial support of IDFA would ensure IDFA could produce resources and hold conferences
Patients want a choice oftreatment methods
In regard to Ig ndash patient choice for IVIg or SCIg Treatment process should be easy not complicated Need more Ig nursing practitioners to train patients for SCIg
Patients want less complicated access to hospital services
When being admitted to emergency the doctors on call have not heard of PID A patient ID card or mobile app with disease information would be handy
Lack of awareness in the medical and general community
IDFA promotes rare diseases through media platformSeek grants for World PI Week to produce a newspaper insert news event
Communication between rare disease organisations
Encourage sharing of information and models of care between rare disease groups
IDFA patients not only have a rare disease they also have severe comorbidities and complex chronic health issues
PIDs work within a framework of chronic disease managementRare Disease Health CentresClinics
2 Patient AdvocacyGapsneeds Narrowing the gap - opportunities
Transition from child to adult care
Many agree that the transition from child to adult hospitals and services represents a major gap in patient care Whatever the system is it is failing our adolescent patients This area needs addressing as it is resulting in teen non compliance with treatment resulting in hospitalisation and occasionally death Plans must be put in place for teens with PID entering the adult world Perhaps an app with appointments treatment dates etc or transition conferences where any young adult from any rare disease organisation can attend
3 Patient individual commitmentGapsneeds Narrowing the gap - opportunities
Patients need to commit to their treatment regime This is a life long process As patients are hospitalised regularly many want home based treatment options to reduce hospital admissions
More hospitals to implement SCIg More Ig nursing practioners to train patients for home treatments The implementation of SCIg is too slow Currently for patients on SCIg the patient needs to pick up monthly treatment so no saving is made in regard to travel costs for members Treatments should be accessible from the patientrsquos local hospital and a 3 monthly supply provided
Patients need economic and social inclusion Join patient organisation which provides resources education mentors buddies social support and conferences
4 Organisational commitmentGapsneeds Narrowing the gap - opportunities
Patients carers and families need economic and social inclusion
Closed Facebook pages ndash (adults and YAMS) mentors and buddies newsletters teleconferences National conferencesndash commitment to member services is dependant on human resources and funding
Patients need information and education about their disease and treatment options They are also interested in global issues and access to clinical trials nationally and internationally
Provide resources to assist with PIDs treatments researchIDFA posts all clinical trials white papers journals etc on website sign up for international information
Patients need a Support officer who is available for chats teleconferences and suggestions for practical coping skills
Due to IDFA growth there is more pressure on our PT Support Officer ldquoTalksrdquo and teleconferences are getting further behind as more staff needed - Without funding there is no member services
Patients need current PID information IDFA is associated with ASCIA and attends annual conference President of ASCIA is IDFA Board MAC Chair IDFA has a close relationship with Aust PID Clinicians and nurses
Patients are interested in global research and events
IDFA is associated with IDF (US) IDFNZ amp IPOPI Executive Officer is Treasurer of IPOPI
5 Patient outcomesGapsneeds Narrowing the gap - opportunities
Patients have high levels of stress which puts relationships at risk
Resource kits discussed with new patients can ease the stress of newly diagnosed patients and their families
Patients need to accept their diseaseEmpowering patients leads to positive emotions = improved quality of life
IDFA staff and mentors assist new patients as soon as they join The IDFA closed Facebook group are very kind and empathetic towards new members they feel they are not alone
Education and resources The provision of an IDFA member resource pack provides education and resources for new members
Access to clinical trials Clinical trials are posted in the website and on Facebook
Genetic sequencing assists future decisions Genetic testing is sought through the Immunologist
Patients want to understand their condition and identify with others
Joining the patient organisation makes them part of a community they identify with Patient organisations are only able to assist if they have adequate human andfinancial resources
6 CommunityGapsneeds Narrowing the gap - opportunities
Patients need to feel supported Joining the patient organisation makes them part of a community they identify with Patient organisations are only able to assist with human andfinancial resources No funding = no services
Patients need to feel part of a PID community where they do not feel so isolated and alone
Foster and engage a PID community where members do not feel so isolated and aloneIDFA member mantra is promoted I Donrsquot Feel Alone
Patient organisations foster a sense of community They provide advocacy and organisational commitment which plays a crucial role in patient care economic and social inclusion compliance and quality of life
If patient organisations received annual government funding this could relieve some of the burden of care placed on the health system by patientsIn Sweden at tax time 1 of taxable income (church tax) must be donated to a church or charity of their choice
PID patients need improved quality of life
Lines of communication between the evidence based model of care and the patient centred model of care are necessary for advocacy and to improve patient quality of life Currently ASCIA and IDFA commit to national advocacy campaigns where ASCIA provides evidence based support and IDFA provides patient based support
Recommendation A community focussed model of care where the patient is supported by the evidence based and the patient centred model of care and includes communication between the evidence based model of care and the patient centred model of care to improve quality of life
Specialist medical team(s)
Disease focussed specialist
Hospital treatments
Co-morbidity specialists Patient
support group
Patient needs
Global communication
Patient advocacy Patient
individual commitment
Organisational commitment
Patient outcomes
PID community
PatientMedical team(s)
Hospital medical
identification
Support Emotional financial
community
Patient support group
Transition process
Streamlined access to
Govt assistance
Access to optimal
treatmentCorrect
diagnosis
ASCIA Evidence based model of care
IDFA Patient centred model of care
Community focussed model of careimproves patients quality of life
ContactExecutive Officer Christine Jeffery
Mobile 0409 945 114
Email christinejefferyidfaorgau
A PO Box 969 Penrith NSW 2751
P 1800 100 198
W wwwidfaorgau
ACN 117 585 976
ABN 99 117 585 976
To become a member complete the membership form online httpwwwidfaorgauidfa-membership-patients-families-healthcare-professionals
Is the peak patient organisation for people affected by PIDs in Australia
Is the 4th largest patient organisation for PIDs in the world
Brings the PID community together by providing free education resources practical advice emotional support conferences events and links members via social media
Advocates for members to ensure accurate diagnosis and optimal treatment to provide a better quality of life
Does not receive funding from the Federal or State governments
The Immune Deficiencies Foundation of Australia
European model of care PID principals of care
This includes1 The role of specialised centres2 The importance of national and international registries3 The need for international collaboration and research4 The role of patient organisations5 Management and treatment options for PIDs6 Managing PID diagnosis and care in all countries
Frontiers in immunology Primary immune deficiencies principles of care Helen Chapel 1 Johan Prevot 2 Hubert Bobby Gaspar 3Teresa Espantildeol 4 Francisco A Bonilla5 Leire Solis2 Josina Drabwell 2 andThe Editorial Board for Working Party on Principles of Care at IPOPI dagger 1 University of Oxford Oxford UK 2 International Patient Organisation for Primary Immunodeficiencies (IPOPI) Downderry UK 3 University College London Institute of Child Health London UK 4 Hospital General Vall drsquoHebron Barcelona Spain 5 Boston Childrenrsquos Hospital Harvard Medical School Boston MA USA 15 December 2014 Information supplied from 30 countries
United Kingdom model of care PID Patient centred chronic care management
The emphasis is on1 The patient as an ldquoexpertrdquo on their disease2 Healthcare teams manage the disease and comorbidities3 Self administered home therapy4 Disease management falls within the framework of other chronic disease management programs5 ldquoPrimary practicerdquo where nurse case managers or immunology centres assist the patient through education support and facilitate access to community resources
NCBI Resources Primary immunodeficiency disease a model for case management of chronic diseases Burton J1 Murphy E Riley P Author information1National Health Service Oxford England janetburtonorhnhsuk
Australian model of care (Clinical professionals) Evidence based model of care Australasian Society of Clinical Immunology and Allergy (ASCIA)
For a patient with a PID the diagnosis treatment and management is by an immunologist
Most PIDs cannot be cured Some require urgent Haematopoietic Stem Cell Transplantation (HSCT) or the outcome is fatal
PIDs need to be managed by an ImmunologistIDFA is affiliated with ASCIA Immunologists and
nurses
6 PID Community
5 Patient Outcomes
4 Organisational (IDFA) commitment
3 PatientCarer Individual commitment
2 Patient Advocacy
1 Patient Needs
Australian model of care (patient organisation) patient centred model of care
IDFArsquos model of care is directed at the national PID community It has 6 focus areas and refers to 3 cohorts of patients The patient centred model of care changes to reflect the needs of each cohort (child adolescent and adult)
1 Child2 Adolescent3 Adult
Example Immunoglobulin treatment methods
1 IVIg in hospital
2 IVIg at home ndashonly a few patients in Australia
Images with permission from Noelene Davies Transfusion Nurse ARCBS presented at IDFA 2013 National Conference
3 SCIg at home 1-3 times a week SCIg assists in maintaining trough levels therefore improving patient health and reducing infections and hospitalisation
This consultant also trains other nurses eg Melbourne has a nurse 25 days per week to train and monitor patients at the Royal Childrenrsquos Hospital Royal Melbourne Alfred and Monash Medical Centre and a few patients in Tasmania
At the Childrenrsquos Hospital Westmead NSW the Immunologist trains parents in the use of SCIg
IDFA endorses patient choice of treatment in consultation with their Immunologist Question If you had the choice to have your treatment at home helliphellip would you
South Australia is the only State with a full time immunology advanced clinical practice consultant (innovative approach for Australia) who trains and monitors patients in the use of SCIg and home IVIg
Example of IDFArsquos model of care Patient choice of Immunoglobulin replacement therapy intravenous immunoglobulin (IVIg) or subcutaneous immunoglobulin (SCIg)
3 Patient commitment
5 Patient outcomes
4 Organisational commitment
6 PID community
2 Patient advocacy
1 Patient needs
IDFA in conjunction with ASCIA campaign for SCIg approval by
NBA
Improved quality of life(better trough levels home
based therapy)
NBA approved SCIg as a treatment choice
IDFA commits to social amp economic inclusion + global information ndash (SCIg used
for 20 years in Europe)
Patient must comply with treatment regime
Choice of Ig treatment options
1 Patient needsPatient Gapsneeds Narrowing the gap - opportunities
A correct diagnosis amp management by Clinician (validation of symptoms)
IDFA continues to raise awareness in the medical community about PIDs Early diagnosis and treatment improves quality of life
Access to optimal treatment options As a ldquodevelopedrdquo nation Australia needs to reduce ldquored taperdquo for treatment options
Education and resources to understand their disease
If Immunologists and transfusion units gave patients IDFA contact details they could access resources and other PID patients to help their journey
Loneliness isolation emotionalsupport communication with other PID patients
Patient organisations can provide emotional support through the PID buddies and mentors system but there needs to be access for patients to other allied health services (psychological physio pumps consumables) that are free
GP Medical Hospital education about condition (frequent hospitalisation)
PID patients are susceptible to infections (need isolation) PID patients need a means of identification about their disease eg an ID card number code or mobile app - patient protective isolation especially for emergency doctors
Quality of life QOL is improved by access to diagnosis optimal medical treatment and care information practical advice coping skills emotional support participating in events and being part of the PID community
2 Patient AdvocacyGapsneeds Narrowing the gap - opportunities
Patient needs ldquotimerdquo to challenge the system for government benefits and services also a clear process to access to the health systemFinancial Government CentrelinkSupport chronic care plans pensions carers allowance medicare allied health services
1 There is general confusion about how the health system functions2 Patient uncertainty in completing forms and rejection 3 Govt support is needed for access to care4 Govt support is needed to identify and process assessments for
PIDRD patients in a way that is easily accessible for patients eg an identified numbercode template could be made so patients donrsquot have the demoralising process of pension rejection several times
5 IDFARD has links on their websites for patients to access the health system
Patients need an allied care health package with the above information
National plan for RD could streamline this process by code or appIf this process is streamlined patients who have had the trauma of new diagnosis will not suffer further trauma financially or emotionally
Patients need advocacy and support from a patient organisation
Advocacy projects cannot proceed without human resources or fundsGovt support is needed financially for patient organisations
2 Patient AdvocacyGapsneeds Narrowing the gap - opportunities
Patients amp families need information and support
Support is based on human resources and funding Annual financial support of IDFA would ensure IDFA could produce resources and hold conferences
Patients want a choice oftreatment methods
In regard to Ig ndash patient choice for IVIg or SCIg Treatment process should be easy not complicated Need more Ig nursing practitioners to train patients for SCIg
Patients want less complicated access to hospital services
When being admitted to emergency the doctors on call have not heard of PID A patient ID card or mobile app with disease information would be handy
Lack of awareness in the medical and general community
IDFA promotes rare diseases through media platformSeek grants for World PI Week to produce a newspaper insert news event
Communication between rare disease organisations
Encourage sharing of information and models of care between rare disease groups
IDFA patients not only have a rare disease they also have severe comorbidities and complex chronic health issues
PIDs work within a framework of chronic disease managementRare Disease Health CentresClinics
2 Patient AdvocacyGapsneeds Narrowing the gap - opportunities
Transition from child to adult care
Many agree that the transition from child to adult hospitals and services represents a major gap in patient care Whatever the system is it is failing our adolescent patients This area needs addressing as it is resulting in teen non compliance with treatment resulting in hospitalisation and occasionally death Plans must be put in place for teens with PID entering the adult world Perhaps an app with appointments treatment dates etc or transition conferences where any young adult from any rare disease organisation can attend
3 Patient individual commitmentGapsneeds Narrowing the gap - opportunities
Patients need to commit to their treatment regime This is a life long process As patients are hospitalised regularly many want home based treatment options to reduce hospital admissions
More hospitals to implement SCIg More Ig nursing practioners to train patients for home treatments The implementation of SCIg is too slow Currently for patients on SCIg the patient needs to pick up monthly treatment so no saving is made in regard to travel costs for members Treatments should be accessible from the patientrsquos local hospital and a 3 monthly supply provided
Patients need economic and social inclusion Join patient organisation which provides resources education mentors buddies social support and conferences
4 Organisational commitmentGapsneeds Narrowing the gap - opportunities
Patients carers and families need economic and social inclusion
Closed Facebook pages ndash (adults and YAMS) mentors and buddies newsletters teleconferences National conferencesndash commitment to member services is dependant on human resources and funding
Patients need information and education about their disease and treatment options They are also interested in global issues and access to clinical trials nationally and internationally
Provide resources to assist with PIDs treatments researchIDFA posts all clinical trials white papers journals etc on website sign up for international information
Patients need a Support officer who is available for chats teleconferences and suggestions for practical coping skills
Due to IDFA growth there is more pressure on our PT Support Officer ldquoTalksrdquo and teleconferences are getting further behind as more staff needed - Without funding there is no member services
Patients need current PID information IDFA is associated with ASCIA and attends annual conference President of ASCIA is IDFA Board MAC Chair IDFA has a close relationship with Aust PID Clinicians and nurses
Patients are interested in global research and events
IDFA is associated with IDF (US) IDFNZ amp IPOPI Executive Officer is Treasurer of IPOPI
5 Patient outcomesGapsneeds Narrowing the gap - opportunities
Patients have high levels of stress which puts relationships at risk
Resource kits discussed with new patients can ease the stress of newly diagnosed patients and their families
Patients need to accept their diseaseEmpowering patients leads to positive emotions = improved quality of life
IDFA staff and mentors assist new patients as soon as they join The IDFA closed Facebook group are very kind and empathetic towards new members they feel they are not alone
Education and resources The provision of an IDFA member resource pack provides education and resources for new members
Access to clinical trials Clinical trials are posted in the website and on Facebook
Genetic sequencing assists future decisions Genetic testing is sought through the Immunologist
Patients want to understand their condition and identify with others
Joining the patient organisation makes them part of a community they identify with Patient organisations are only able to assist if they have adequate human andfinancial resources
6 CommunityGapsneeds Narrowing the gap - opportunities
Patients need to feel supported Joining the patient organisation makes them part of a community they identify with Patient organisations are only able to assist with human andfinancial resources No funding = no services
Patients need to feel part of a PID community where they do not feel so isolated and alone
Foster and engage a PID community where members do not feel so isolated and aloneIDFA member mantra is promoted I Donrsquot Feel Alone
Patient organisations foster a sense of community They provide advocacy and organisational commitment which plays a crucial role in patient care economic and social inclusion compliance and quality of life
If patient organisations received annual government funding this could relieve some of the burden of care placed on the health system by patientsIn Sweden at tax time 1 of taxable income (church tax) must be donated to a church or charity of their choice
PID patients need improved quality of life
Lines of communication between the evidence based model of care and the patient centred model of care are necessary for advocacy and to improve patient quality of life Currently ASCIA and IDFA commit to national advocacy campaigns where ASCIA provides evidence based support and IDFA provides patient based support
Recommendation A community focussed model of care where the patient is supported by the evidence based and the patient centred model of care and includes communication between the evidence based model of care and the patient centred model of care to improve quality of life
Specialist medical team(s)
Disease focussed specialist
Hospital treatments
Co-morbidity specialists Patient
support group
Patient needs
Global communication
Patient advocacy Patient
individual commitment
Organisational commitment
Patient outcomes
PID community
PatientMedical team(s)
Hospital medical
identification
Support Emotional financial
community
Patient support group
Transition process
Streamlined access to
Govt assistance
Access to optimal
treatmentCorrect
diagnosis
ASCIA Evidence based model of care
IDFA Patient centred model of care
Community focussed model of careimproves patients quality of life
ContactExecutive Officer Christine Jeffery
Mobile 0409 945 114
Email christinejefferyidfaorgau
A PO Box 969 Penrith NSW 2751
P 1800 100 198
W wwwidfaorgau
ACN 117 585 976
ABN 99 117 585 976
To become a member complete the membership form online httpwwwidfaorgauidfa-membership-patients-families-healthcare-professionals
European model of care PID principals of care
This includes1 The role of specialised centres2 The importance of national and international registries3 The need for international collaboration and research4 The role of patient organisations5 Management and treatment options for PIDs6 Managing PID diagnosis and care in all countries
Frontiers in immunology Primary immune deficiencies principles of care Helen Chapel 1 Johan Prevot 2 Hubert Bobby Gaspar 3Teresa Espantildeol 4 Francisco A Bonilla5 Leire Solis2 Josina Drabwell 2 andThe Editorial Board for Working Party on Principles of Care at IPOPI dagger 1 University of Oxford Oxford UK 2 International Patient Organisation for Primary Immunodeficiencies (IPOPI) Downderry UK 3 University College London Institute of Child Health London UK 4 Hospital General Vall drsquoHebron Barcelona Spain 5 Boston Childrenrsquos Hospital Harvard Medical School Boston MA USA 15 December 2014 Information supplied from 30 countries
United Kingdom model of care PID Patient centred chronic care management
The emphasis is on1 The patient as an ldquoexpertrdquo on their disease2 Healthcare teams manage the disease and comorbidities3 Self administered home therapy4 Disease management falls within the framework of other chronic disease management programs5 ldquoPrimary practicerdquo where nurse case managers or immunology centres assist the patient through education support and facilitate access to community resources
NCBI Resources Primary immunodeficiency disease a model for case management of chronic diseases Burton J1 Murphy E Riley P Author information1National Health Service Oxford England janetburtonorhnhsuk
Australian model of care (Clinical professionals) Evidence based model of care Australasian Society of Clinical Immunology and Allergy (ASCIA)
For a patient with a PID the diagnosis treatment and management is by an immunologist
Most PIDs cannot be cured Some require urgent Haematopoietic Stem Cell Transplantation (HSCT) or the outcome is fatal
PIDs need to be managed by an ImmunologistIDFA is affiliated with ASCIA Immunologists and
nurses
6 PID Community
5 Patient Outcomes
4 Organisational (IDFA) commitment
3 PatientCarer Individual commitment
2 Patient Advocacy
1 Patient Needs
Australian model of care (patient organisation) patient centred model of care
IDFArsquos model of care is directed at the national PID community It has 6 focus areas and refers to 3 cohorts of patients The patient centred model of care changes to reflect the needs of each cohort (child adolescent and adult)
1 Child2 Adolescent3 Adult
Example Immunoglobulin treatment methods
1 IVIg in hospital
2 IVIg at home ndashonly a few patients in Australia
Images with permission from Noelene Davies Transfusion Nurse ARCBS presented at IDFA 2013 National Conference
3 SCIg at home 1-3 times a week SCIg assists in maintaining trough levels therefore improving patient health and reducing infections and hospitalisation
This consultant also trains other nurses eg Melbourne has a nurse 25 days per week to train and monitor patients at the Royal Childrenrsquos Hospital Royal Melbourne Alfred and Monash Medical Centre and a few patients in Tasmania
At the Childrenrsquos Hospital Westmead NSW the Immunologist trains parents in the use of SCIg
IDFA endorses patient choice of treatment in consultation with their Immunologist Question If you had the choice to have your treatment at home helliphellip would you
South Australia is the only State with a full time immunology advanced clinical practice consultant (innovative approach for Australia) who trains and monitors patients in the use of SCIg and home IVIg
Example of IDFArsquos model of care Patient choice of Immunoglobulin replacement therapy intravenous immunoglobulin (IVIg) or subcutaneous immunoglobulin (SCIg)
3 Patient commitment
5 Patient outcomes
4 Organisational commitment
6 PID community
2 Patient advocacy
1 Patient needs
IDFA in conjunction with ASCIA campaign for SCIg approval by
NBA
Improved quality of life(better trough levels home
based therapy)
NBA approved SCIg as a treatment choice
IDFA commits to social amp economic inclusion + global information ndash (SCIg used
for 20 years in Europe)
Patient must comply with treatment regime
Choice of Ig treatment options
1 Patient needsPatient Gapsneeds Narrowing the gap - opportunities
A correct diagnosis amp management by Clinician (validation of symptoms)
IDFA continues to raise awareness in the medical community about PIDs Early diagnosis and treatment improves quality of life
Access to optimal treatment options As a ldquodevelopedrdquo nation Australia needs to reduce ldquored taperdquo for treatment options
Education and resources to understand their disease
If Immunologists and transfusion units gave patients IDFA contact details they could access resources and other PID patients to help their journey
Loneliness isolation emotionalsupport communication with other PID patients
Patient organisations can provide emotional support through the PID buddies and mentors system but there needs to be access for patients to other allied health services (psychological physio pumps consumables) that are free
GP Medical Hospital education about condition (frequent hospitalisation)
PID patients are susceptible to infections (need isolation) PID patients need a means of identification about their disease eg an ID card number code or mobile app - patient protective isolation especially for emergency doctors
Quality of life QOL is improved by access to diagnosis optimal medical treatment and care information practical advice coping skills emotional support participating in events and being part of the PID community
2 Patient AdvocacyGapsneeds Narrowing the gap - opportunities
Patient needs ldquotimerdquo to challenge the system for government benefits and services also a clear process to access to the health systemFinancial Government CentrelinkSupport chronic care plans pensions carers allowance medicare allied health services
1 There is general confusion about how the health system functions2 Patient uncertainty in completing forms and rejection 3 Govt support is needed for access to care4 Govt support is needed to identify and process assessments for
PIDRD patients in a way that is easily accessible for patients eg an identified numbercode template could be made so patients donrsquot have the demoralising process of pension rejection several times
5 IDFARD has links on their websites for patients to access the health system
Patients need an allied care health package with the above information
National plan for RD could streamline this process by code or appIf this process is streamlined patients who have had the trauma of new diagnosis will not suffer further trauma financially or emotionally
Patients need advocacy and support from a patient organisation
Advocacy projects cannot proceed without human resources or fundsGovt support is needed financially for patient organisations
2 Patient AdvocacyGapsneeds Narrowing the gap - opportunities
Patients amp families need information and support
Support is based on human resources and funding Annual financial support of IDFA would ensure IDFA could produce resources and hold conferences
Patients want a choice oftreatment methods
In regard to Ig ndash patient choice for IVIg or SCIg Treatment process should be easy not complicated Need more Ig nursing practitioners to train patients for SCIg
Patients want less complicated access to hospital services
When being admitted to emergency the doctors on call have not heard of PID A patient ID card or mobile app with disease information would be handy
Lack of awareness in the medical and general community
IDFA promotes rare diseases through media platformSeek grants for World PI Week to produce a newspaper insert news event
Communication between rare disease organisations
Encourage sharing of information and models of care between rare disease groups
IDFA patients not only have a rare disease they also have severe comorbidities and complex chronic health issues
PIDs work within a framework of chronic disease managementRare Disease Health CentresClinics
2 Patient AdvocacyGapsneeds Narrowing the gap - opportunities
Transition from child to adult care
Many agree that the transition from child to adult hospitals and services represents a major gap in patient care Whatever the system is it is failing our adolescent patients This area needs addressing as it is resulting in teen non compliance with treatment resulting in hospitalisation and occasionally death Plans must be put in place for teens with PID entering the adult world Perhaps an app with appointments treatment dates etc or transition conferences where any young adult from any rare disease organisation can attend
3 Patient individual commitmentGapsneeds Narrowing the gap - opportunities
Patients need to commit to their treatment regime This is a life long process As patients are hospitalised regularly many want home based treatment options to reduce hospital admissions
More hospitals to implement SCIg More Ig nursing practioners to train patients for home treatments The implementation of SCIg is too slow Currently for patients on SCIg the patient needs to pick up monthly treatment so no saving is made in regard to travel costs for members Treatments should be accessible from the patientrsquos local hospital and a 3 monthly supply provided
Patients need economic and social inclusion Join patient organisation which provides resources education mentors buddies social support and conferences
4 Organisational commitmentGapsneeds Narrowing the gap - opportunities
Patients carers and families need economic and social inclusion
Closed Facebook pages ndash (adults and YAMS) mentors and buddies newsletters teleconferences National conferencesndash commitment to member services is dependant on human resources and funding
Patients need information and education about their disease and treatment options They are also interested in global issues and access to clinical trials nationally and internationally
Provide resources to assist with PIDs treatments researchIDFA posts all clinical trials white papers journals etc on website sign up for international information
Patients need a Support officer who is available for chats teleconferences and suggestions for practical coping skills
Due to IDFA growth there is more pressure on our PT Support Officer ldquoTalksrdquo and teleconferences are getting further behind as more staff needed - Without funding there is no member services
Patients need current PID information IDFA is associated with ASCIA and attends annual conference President of ASCIA is IDFA Board MAC Chair IDFA has a close relationship with Aust PID Clinicians and nurses
Patients are interested in global research and events
IDFA is associated with IDF (US) IDFNZ amp IPOPI Executive Officer is Treasurer of IPOPI
5 Patient outcomesGapsneeds Narrowing the gap - opportunities
Patients have high levels of stress which puts relationships at risk
Resource kits discussed with new patients can ease the stress of newly diagnosed patients and their families
Patients need to accept their diseaseEmpowering patients leads to positive emotions = improved quality of life
IDFA staff and mentors assist new patients as soon as they join The IDFA closed Facebook group are very kind and empathetic towards new members they feel they are not alone
Education and resources The provision of an IDFA member resource pack provides education and resources for new members
Access to clinical trials Clinical trials are posted in the website and on Facebook
Genetic sequencing assists future decisions Genetic testing is sought through the Immunologist
Patients want to understand their condition and identify with others
Joining the patient organisation makes them part of a community they identify with Patient organisations are only able to assist if they have adequate human andfinancial resources
6 CommunityGapsneeds Narrowing the gap - opportunities
Patients need to feel supported Joining the patient organisation makes them part of a community they identify with Patient organisations are only able to assist with human andfinancial resources No funding = no services
Patients need to feel part of a PID community where they do not feel so isolated and alone
Foster and engage a PID community where members do not feel so isolated and aloneIDFA member mantra is promoted I Donrsquot Feel Alone
Patient organisations foster a sense of community They provide advocacy and organisational commitment which plays a crucial role in patient care economic and social inclusion compliance and quality of life
If patient organisations received annual government funding this could relieve some of the burden of care placed on the health system by patientsIn Sweden at tax time 1 of taxable income (church tax) must be donated to a church or charity of their choice
PID patients need improved quality of life
Lines of communication between the evidence based model of care and the patient centred model of care are necessary for advocacy and to improve patient quality of life Currently ASCIA and IDFA commit to national advocacy campaigns where ASCIA provides evidence based support and IDFA provides patient based support
Recommendation A community focussed model of care where the patient is supported by the evidence based and the patient centred model of care and includes communication between the evidence based model of care and the patient centred model of care to improve quality of life
Specialist medical team(s)
Disease focussed specialist
Hospital treatments
Co-morbidity specialists Patient
support group
Patient needs
Global communication
Patient advocacy Patient
individual commitment
Organisational commitment
Patient outcomes
PID community
PatientMedical team(s)
Hospital medical
identification
Support Emotional financial
community
Patient support group
Transition process
Streamlined access to
Govt assistance
Access to optimal
treatmentCorrect
diagnosis
ASCIA Evidence based model of care
IDFA Patient centred model of care
Community focussed model of careimproves patients quality of life
ContactExecutive Officer Christine Jeffery
Mobile 0409 945 114
Email christinejefferyidfaorgau
A PO Box 969 Penrith NSW 2751
P 1800 100 198
W wwwidfaorgau
ACN 117 585 976
ABN 99 117 585 976
To become a member complete the membership form online httpwwwidfaorgauidfa-membership-patients-families-healthcare-professionals
United Kingdom model of care PID Patient centred chronic care management
The emphasis is on1 The patient as an ldquoexpertrdquo on their disease2 Healthcare teams manage the disease and comorbidities3 Self administered home therapy4 Disease management falls within the framework of other chronic disease management programs5 ldquoPrimary practicerdquo where nurse case managers or immunology centres assist the patient through education support and facilitate access to community resources
NCBI Resources Primary immunodeficiency disease a model for case management of chronic diseases Burton J1 Murphy E Riley P Author information1National Health Service Oxford England janetburtonorhnhsuk
Australian model of care (Clinical professionals) Evidence based model of care Australasian Society of Clinical Immunology and Allergy (ASCIA)
For a patient with a PID the diagnosis treatment and management is by an immunologist
Most PIDs cannot be cured Some require urgent Haematopoietic Stem Cell Transplantation (HSCT) or the outcome is fatal
PIDs need to be managed by an ImmunologistIDFA is affiliated with ASCIA Immunologists and
nurses
6 PID Community
5 Patient Outcomes
4 Organisational (IDFA) commitment
3 PatientCarer Individual commitment
2 Patient Advocacy
1 Patient Needs
Australian model of care (patient organisation) patient centred model of care
IDFArsquos model of care is directed at the national PID community It has 6 focus areas and refers to 3 cohorts of patients The patient centred model of care changes to reflect the needs of each cohort (child adolescent and adult)
1 Child2 Adolescent3 Adult
Example Immunoglobulin treatment methods
1 IVIg in hospital
2 IVIg at home ndashonly a few patients in Australia
Images with permission from Noelene Davies Transfusion Nurse ARCBS presented at IDFA 2013 National Conference
3 SCIg at home 1-3 times a week SCIg assists in maintaining trough levels therefore improving patient health and reducing infections and hospitalisation
This consultant also trains other nurses eg Melbourne has a nurse 25 days per week to train and monitor patients at the Royal Childrenrsquos Hospital Royal Melbourne Alfred and Monash Medical Centre and a few patients in Tasmania
At the Childrenrsquos Hospital Westmead NSW the Immunologist trains parents in the use of SCIg
IDFA endorses patient choice of treatment in consultation with their Immunologist Question If you had the choice to have your treatment at home helliphellip would you
South Australia is the only State with a full time immunology advanced clinical practice consultant (innovative approach for Australia) who trains and monitors patients in the use of SCIg and home IVIg
Example of IDFArsquos model of care Patient choice of Immunoglobulin replacement therapy intravenous immunoglobulin (IVIg) or subcutaneous immunoglobulin (SCIg)
3 Patient commitment
5 Patient outcomes
4 Organisational commitment
6 PID community
2 Patient advocacy
1 Patient needs
IDFA in conjunction with ASCIA campaign for SCIg approval by
NBA
Improved quality of life(better trough levels home
based therapy)
NBA approved SCIg as a treatment choice
IDFA commits to social amp economic inclusion + global information ndash (SCIg used
for 20 years in Europe)
Patient must comply with treatment regime
Choice of Ig treatment options
1 Patient needsPatient Gapsneeds Narrowing the gap - opportunities
A correct diagnosis amp management by Clinician (validation of symptoms)
IDFA continues to raise awareness in the medical community about PIDs Early diagnosis and treatment improves quality of life
Access to optimal treatment options As a ldquodevelopedrdquo nation Australia needs to reduce ldquored taperdquo for treatment options
Education and resources to understand their disease
If Immunologists and transfusion units gave patients IDFA contact details they could access resources and other PID patients to help their journey
Loneliness isolation emotionalsupport communication with other PID patients
Patient organisations can provide emotional support through the PID buddies and mentors system but there needs to be access for patients to other allied health services (psychological physio pumps consumables) that are free
GP Medical Hospital education about condition (frequent hospitalisation)
PID patients are susceptible to infections (need isolation) PID patients need a means of identification about their disease eg an ID card number code or mobile app - patient protective isolation especially for emergency doctors
Quality of life QOL is improved by access to diagnosis optimal medical treatment and care information practical advice coping skills emotional support participating in events and being part of the PID community
2 Patient AdvocacyGapsneeds Narrowing the gap - opportunities
Patient needs ldquotimerdquo to challenge the system for government benefits and services also a clear process to access to the health systemFinancial Government CentrelinkSupport chronic care plans pensions carers allowance medicare allied health services
1 There is general confusion about how the health system functions2 Patient uncertainty in completing forms and rejection 3 Govt support is needed for access to care4 Govt support is needed to identify and process assessments for
PIDRD patients in a way that is easily accessible for patients eg an identified numbercode template could be made so patients donrsquot have the demoralising process of pension rejection several times
5 IDFARD has links on their websites for patients to access the health system
Patients need an allied care health package with the above information
National plan for RD could streamline this process by code or appIf this process is streamlined patients who have had the trauma of new diagnosis will not suffer further trauma financially or emotionally
Patients need advocacy and support from a patient organisation
Advocacy projects cannot proceed without human resources or fundsGovt support is needed financially for patient organisations
2 Patient AdvocacyGapsneeds Narrowing the gap - opportunities
Patients amp families need information and support
Support is based on human resources and funding Annual financial support of IDFA would ensure IDFA could produce resources and hold conferences
Patients want a choice oftreatment methods
In regard to Ig ndash patient choice for IVIg or SCIg Treatment process should be easy not complicated Need more Ig nursing practitioners to train patients for SCIg
Patients want less complicated access to hospital services
When being admitted to emergency the doctors on call have not heard of PID A patient ID card or mobile app with disease information would be handy
Lack of awareness in the medical and general community
IDFA promotes rare diseases through media platformSeek grants for World PI Week to produce a newspaper insert news event
Communication between rare disease organisations
Encourage sharing of information and models of care between rare disease groups
IDFA patients not only have a rare disease they also have severe comorbidities and complex chronic health issues
PIDs work within a framework of chronic disease managementRare Disease Health CentresClinics
2 Patient AdvocacyGapsneeds Narrowing the gap - opportunities
Transition from child to adult care
Many agree that the transition from child to adult hospitals and services represents a major gap in patient care Whatever the system is it is failing our adolescent patients This area needs addressing as it is resulting in teen non compliance with treatment resulting in hospitalisation and occasionally death Plans must be put in place for teens with PID entering the adult world Perhaps an app with appointments treatment dates etc or transition conferences where any young adult from any rare disease organisation can attend
3 Patient individual commitmentGapsneeds Narrowing the gap - opportunities
Patients need to commit to their treatment regime This is a life long process As patients are hospitalised regularly many want home based treatment options to reduce hospital admissions
More hospitals to implement SCIg More Ig nursing practioners to train patients for home treatments The implementation of SCIg is too slow Currently for patients on SCIg the patient needs to pick up monthly treatment so no saving is made in regard to travel costs for members Treatments should be accessible from the patientrsquos local hospital and a 3 monthly supply provided
Patients need economic and social inclusion Join patient organisation which provides resources education mentors buddies social support and conferences
4 Organisational commitmentGapsneeds Narrowing the gap - opportunities
Patients carers and families need economic and social inclusion
Closed Facebook pages ndash (adults and YAMS) mentors and buddies newsletters teleconferences National conferencesndash commitment to member services is dependant on human resources and funding
Patients need information and education about their disease and treatment options They are also interested in global issues and access to clinical trials nationally and internationally
Provide resources to assist with PIDs treatments researchIDFA posts all clinical trials white papers journals etc on website sign up for international information
Patients need a Support officer who is available for chats teleconferences and suggestions for practical coping skills
Due to IDFA growth there is more pressure on our PT Support Officer ldquoTalksrdquo and teleconferences are getting further behind as more staff needed - Without funding there is no member services
Patients need current PID information IDFA is associated with ASCIA and attends annual conference President of ASCIA is IDFA Board MAC Chair IDFA has a close relationship with Aust PID Clinicians and nurses
Patients are interested in global research and events
IDFA is associated with IDF (US) IDFNZ amp IPOPI Executive Officer is Treasurer of IPOPI
5 Patient outcomesGapsneeds Narrowing the gap - opportunities
Patients have high levels of stress which puts relationships at risk
Resource kits discussed with new patients can ease the stress of newly diagnosed patients and their families
Patients need to accept their diseaseEmpowering patients leads to positive emotions = improved quality of life
IDFA staff and mentors assist new patients as soon as they join The IDFA closed Facebook group are very kind and empathetic towards new members they feel they are not alone
Education and resources The provision of an IDFA member resource pack provides education and resources for new members
Access to clinical trials Clinical trials are posted in the website and on Facebook
Genetic sequencing assists future decisions Genetic testing is sought through the Immunologist
Patients want to understand their condition and identify with others
Joining the patient organisation makes them part of a community they identify with Patient organisations are only able to assist if they have adequate human andfinancial resources
6 CommunityGapsneeds Narrowing the gap - opportunities
Patients need to feel supported Joining the patient organisation makes them part of a community they identify with Patient organisations are only able to assist with human andfinancial resources No funding = no services
Patients need to feel part of a PID community where they do not feel so isolated and alone
Foster and engage a PID community where members do not feel so isolated and aloneIDFA member mantra is promoted I Donrsquot Feel Alone
Patient organisations foster a sense of community They provide advocacy and organisational commitment which plays a crucial role in patient care economic and social inclusion compliance and quality of life
If patient organisations received annual government funding this could relieve some of the burden of care placed on the health system by patientsIn Sweden at tax time 1 of taxable income (church tax) must be donated to a church or charity of their choice
PID patients need improved quality of life
Lines of communication between the evidence based model of care and the patient centred model of care are necessary for advocacy and to improve patient quality of life Currently ASCIA and IDFA commit to national advocacy campaigns where ASCIA provides evidence based support and IDFA provides patient based support
Recommendation A community focussed model of care where the patient is supported by the evidence based and the patient centred model of care and includes communication between the evidence based model of care and the patient centred model of care to improve quality of life
Specialist medical team(s)
Disease focussed specialist
Hospital treatments
Co-morbidity specialists Patient
support group
Patient needs
Global communication
Patient advocacy Patient
individual commitment
Organisational commitment
Patient outcomes
PID community
PatientMedical team(s)
Hospital medical
identification
Support Emotional financial
community
Patient support group
Transition process
Streamlined access to
Govt assistance
Access to optimal
treatmentCorrect
diagnosis
ASCIA Evidence based model of care
IDFA Patient centred model of care
Community focussed model of careimproves patients quality of life
ContactExecutive Officer Christine Jeffery
Mobile 0409 945 114
Email christinejefferyidfaorgau
A PO Box 969 Penrith NSW 2751
P 1800 100 198
W wwwidfaorgau
ACN 117 585 976
ABN 99 117 585 976
To become a member complete the membership form online httpwwwidfaorgauidfa-membership-patients-families-healthcare-professionals
Australian model of care (Clinical professionals) Evidence based model of care Australasian Society of Clinical Immunology and Allergy (ASCIA)
For a patient with a PID the diagnosis treatment and management is by an immunologist
Most PIDs cannot be cured Some require urgent Haematopoietic Stem Cell Transplantation (HSCT) or the outcome is fatal
PIDs need to be managed by an ImmunologistIDFA is affiliated with ASCIA Immunologists and
nurses
6 PID Community
5 Patient Outcomes
4 Organisational (IDFA) commitment
3 PatientCarer Individual commitment
2 Patient Advocacy
1 Patient Needs
Australian model of care (patient organisation) patient centred model of care
IDFArsquos model of care is directed at the national PID community It has 6 focus areas and refers to 3 cohorts of patients The patient centred model of care changes to reflect the needs of each cohort (child adolescent and adult)
1 Child2 Adolescent3 Adult
Example Immunoglobulin treatment methods
1 IVIg in hospital
2 IVIg at home ndashonly a few patients in Australia
Images with permission from Noelene Davies Transfusion Nurse ARCBS presented at IDFA 2013 National Conference
3 SCIg at home 1-3 times a week SCIg assists in maintaining trough levels therefore improving patient health and reducing infections and hospitalisation
This consultant also trains other nurses eg Melbourne has a nurse 25 days per week to train and monitor patients at the Royal Childrenrsquos Hospital Royal Melbourne Alfred and Monash Medical Centre and a few patients in Tasmania
At the Childrenrsquos Hospital Westmead NSW the Immunologist trains parents in the use of SCIg
IDFA endorses patient choice of treatment in consultation with their Immunologist Question If you had the choice to have your treatment at home helliphellip would you
South Australia is the only State with a full time immunology advanced clinical practice consultant (innovative approach for Australia) who trains and monitors patients in the use of SCIg and home IVIg
Example of IDFArsquos model of care Patient choice of Immunoglobulin replacement therapy intravenous immunoglobulin (IVIg) or subcutaneous immunoglobulin (SCIg)
3 Patient commitment
5 Patient outcomes
4 Organisational commitment
6 PID community
2 Patient advocacy
1 Patient needs
IDFA in conjunction with ASCIA campaign for SCIg approval by
NBA
Improved quality of life(better trough levels home
based therapy)
NBA approved SCIg as a treatment choice
IDFA commits to social amp economic inclusion + global information ndash (SCIg used
for 20 years in Europe)
Patient must comply with treatment regime
Choice of Ig treatment options
1 Patient needsPatient Gapsneeds Narrowing the gap - opportunities
A correct diagnosis amp management by Clinician (validation of symptoms)
IDFA continues to raise awareness in the medical community about PIDs Early diagnosis and treatment improves quality of life
Access to optimal treatment options As a ldquodevelopedrdquo nation Australia needs to reduce ldquored taperdquo for treatment options
Education and resources to understand their disease
If Immunologists and transfusion units gave patients IDFA contact details they could access resources and other PID patients to help their journey
Loneliness isolation emotionalsupport communication with other PID patients
Patient organisations can provide emotional support through the PID buddies and mentors system but there needs to be access for patients to other allied health services (psychological physio pumps consumables) that are free
GP Medical Hospital education about condition (frequent hospitalisation)
PID patients are susceptible to infections (need isolation) PID patients need a means of identification about their disease eg an ID card number code or mobile app - patient protective isolation especially for emergency doctors
Quality of life QOL is improved by access to diagnosis optimal medical treatment and care information practical advice coping skills emotional support participating in events and being part of the PID community
2 Patient AdvocacyGapsneeds Narrowing the gap - opportunities
Patient needs ldquotimerdquo to challenge the system for government benefits and services also a clear process to access to the health systemFinancial Government CentrelinkSupport chronic care plans pensions carers allowance medicare allied health services
1 There is general confusion about how the health system functions2 Patient uncertainty in completing forms and rejection 3 Govt support is needed for access to care4 Govt support is needed to identify and process assessments for
PIDRD patients in a way that is easily accessible for patients eg an identified numbercode template could be made so patients donrsquot have the demoralising process of pension rejection several times
5 IDFARD has links on their websites for patients to access the health system
Patients need an allied care health package with the above information
National plan for RD could streamline this process by code or appIf this process is streamlined patients who have had the trauma of new diagnosis will not suffer further trauma financially or emotionally
Patients need advocacy and support from a patient organisation
Advocacy projects cannot proceed without human resources or fundsGovt support is needed financially for patient organisations
2 Patient AdvocacyGapsneeds Narrowing the gap - opportunities
Patients amp families need information and support
Support is based on human resources and funding Annual financial support of IDFA would ensure IDFA could produce resources and hold conferences
Patients want a choice oftreatment methods
In regard to Ig ndash patient choice for IVIg or SCIg Treatment process should be easy not complicated Need more Ig nursing practitioners to train patients for SCIg
Patients want less complicated access to hospital services
When being admitted to emergency the doctors on call have not heard of PID A patient ID card or mobile app with disease information would be handy
Lack of awareness in the medical and general community
IDFA promotes rare diseases through media platformSeek grants for World PI Week to produce a newspaper insert news event
Communication between rare disease organisations
Encourage sharing of information and models of care between rare disease groups
IDFA patients not only have a rare disease they also have severe comorbidities and complex chronic health issues
PIDs work within a framework of chronic disease managementRare Disease Health CentresClinics
2 Patient AdvocacyGapsneeds Narrowing the gap - opportunities
Transition from child to adult care
Many agree that the transition from child to adult hospitals and services represents a major gap in patient care Whatever the system is it is failing our adolescent patients This area needs addressing as it is resulting in teen non compliance with treatment resulting in hospitalisation and occasionally death Plans must be put in place for teens with PID entering the adult world Perhaps an app with appointments treatment dates etc or transition conferences where any young adult from any rare disease organisation can attend
3 Patient individual commitmentGapsneeds Narrowing the gap - opportunities
Patients need to commit to their treatment regime This is a life long process As patients are hospitalised regularly many want home based treatment options to reduce hospital admissions
More hospitals to implement SCIg More Ig nursing practioners to train patients for home treatments The implementation of SCIg is too slow Currently for patients on SCIg the patient needs to pick up monthly treatment so no saving is made in regard to travel costs for members Treatments should be accessible from the patientrsquos local hospital and a 3 monthly supply provided
Patients need economic and social inclusion Join patient organisation which provides resources education mentors buddies social support and conferences
4 Organisational commitmentGapsneeds Narrowing the gap - opportunities
Patients carers and families need economic and social inclusion
Closed Facebook pages ndash (adults and YAMS) mentors and buddies newsletters teleconferences National conferencesndash commitment to member services is dependant on human resources and funding
Patients need information and education about their disease and treatment options They are also interested in global issues and access to clinical trials nationally and internationally
Provide resources to assist with PIDs treatments researchIDFA posts all clinical trials white papers journals etc on website sign up for international information
Patients need a Support officer who is available for chats teleconferences and suggestions for practical coping skills
Due to IDFA growth there is more pressure on our PT Support Officer ldquoTalksrdquo and teleconferences are getting further behind as more staff needed - Without funding there is no member services
Patients need current PID information IDFA is associated with ASCIA and attends annual conference President of ASCIA is IDFA Board MAC Chair IDFA has a close relationship with Aust PID Clinicians and nurses
Patients are interested in global research and events
IDFA is associated with IDF (US) IDFNZ amp IPOPI Executive Officer is Treasurer of IPOPI
5 Patient outcomesGapsneeds Narrowing the gap - opportunities
Patients have high levels of stress which puts relationships at risk
Resource kits discussed with new patients can ease the stress of newly diagnosed patients and their families
Patients need to accept their diseaseEmpowering patients leads to positive emotions = improved quality of life
IDFA staff and mentors assist new patients as soon as they join The IDFA closed Facebook group are very kind and empathetic towards new members they feel they are not alone
Education and resources The provision of an IDFA member resource pack provides education and resources for new members
Access to clinical trials Clinical trials are posted in the website and on Facebook
Genetic sequencing assists future decisions Genetic testing is sought through the Immunologist
Patients want to understand their condition and identify with others
Joining the patient organisation makes them part of a community they identify with Patient organisations are only able to assist if they have adequate human andfinancial resources
6 CommunityGapsneeds Narrowing the gap - opportunities
Patients need to feel supported Joining the patient organisation makes them part of a community they identify with Patient organisations are only able to assist with human andfinancial resources No funding = no services
Patients need to feel part of a PID community where they do not feel so isolated and alone
Foster and engage a PID community where members do not feel so isolated and aloneIDFA member mantra is promoted I Donrsquot Feel Alone
Patient organisations foster a sense of community They provide advocacy and organisational commitment which plays a crucial role in patient care economic and social inclusion compliance and quality of life
If patient organisations received annual government funding this could relieve some of the burden of care placed on the health system by patientsIn Sweden at tax time 1 of taxable income (church tax) must be donated to a church or charity of their choice
PID patients need improved quality of life
Lines of communication between the evidence based model of care and the patient centred model of care are necessary for advocacy and to improve patient quality of life Currently ASCIA and IDFA commit to national advocacy campaigns where ASCIA provides evidence based support and IDFA provides patient based support
Recommendation A community focussed model of care where the patient is supported by the evidence based and the patient centred model of care and includes communication between the evidence based model of care and the patient centred model of care to improve quality of life
Specialist medical team(s)
Disease focussed specialist
Hospital treatments
Co-morbidity specialists Patient
support group
Patient needs
Global communication
Patient advocacy Patient
individual commitment
Organisational commitment
Patient outcomes
PID community
PatientMedical team(s)
Hospital medical
identification
Support Emotional financial
community
Patient support group
Transition process
Streamlined access to
Govt assistance
Access to optimal
treatmentCorrect
diagnosis
ASCIA Evidence based model of care
IDFA Patient centred model of care
Community focussed model of careimproves patients quality of life
ContactExecutive Officer Christine Jeffery
Mobile 0409 945 114
Email christinejefferyidfaorgau
A PO Box 969 Penrith NSW 2751
P 1800 100 198
W wwwidfaorgau
ACN 117 585 976
ABN 99 117 585 976
To become a member complete the membership form online httpwwwidfaorgauidfa-membership-patients-families-healthcare-professionals
6 PID Community
5 Patient Outcomes
4 Organisational (IDFA) commitment
3 PatientCarer Individual commitment
2 Patient Advocacy
1 Patient Needs
Australian model of care (patient organisation) patient centred model of care
IDFArsquos model of care is directed at the national PID community It has 6 focus areas and refers to 3 cohorts of patients The patient centred model of care changes to reflect the needs of each cohort (child adolescent and adult)
1 Child2 Adolescent3 Adult
Example Immunoglobulin treatment methods
1 IVIg in hospital
2 IVIg at home ndashonly a few patients in Australia
Images with permission from Noelene Davies Transfusion Nurse ARCBS presented at IDFA 2013 National Conference
3 SCIg at home 1-3 times a week SCIg assists in maintaining trough levels therefore improving patient health and reducing infections and hospitalisation
This consultant also trains other nurses eg Melbourne has a nurse 25 days per week to train and monitor patients at the Royal Childrenrsquos Hospital Royal Melbourne Alfred and Monash Medical Centre and a few patients in Tasmania
At the Childrenrsquos Hospital Westmead NSW the Immunologist trains parents in the use of SCIg
IDFA endorses patient choice of treatment in consultation with their Immunologist Question If you had the choice to have your treatment at home helliphellip would you
South Australia is the only State with a full time immunology advanced clinical practice consultant (innovative approach for Australia) who trains and monitors patients in the use of SCIg and home IVIg
Example of IDFArsquos model of care Patient choice of Immunoglobulin replacement therapy intravenous immunoglobulin (IVIg) or subcutaneous immunoglobulin (SCIg)
3 Patient commitment
5 Patient outcomes
4 Organisational commitment
6 PID community
2 Patient advocacy
1 Patient needs
IDFA in conjunction with ASCIA campaign for SCIg approval by
NBA
Improved quality of life(better trough levels home
based therapy)
NBA approved SCIg as a treatment choice
IDFA commits to social amp economic inclusion + global information ndash (SCIg used
for 20 years in Europe)
Patient must comply with treatment regime
Choice of Ig treatment options
1 Patient needsPatient Gapsneeds Narrowing the gap - opportunities
A correct diagnosis amp management by Clinician (validation of symptoms)
IDFA continues to raise awareness in the medical community about PIDs Early diagnosis and treatment improves quality of life
Access to optimal treatment options As a ldquodevelopedrdquo nation Australia needs to reduce ldquored taperdquo for treatment options
Education and resources to understand their disease
If Immunologists and transfusion units gave patients IDFA contact details they could access resources and other PID patients to help their journey
Loneliness isolation emotionalsupport communication with other PID patients
Patient organisations can provide emotional support through the PID buddies and mentors system but there needs to be access for patients to other allied health services (psychological physio pumps consumables) that are free
GP Medical Hospital education about condition (frequent hospitalisation)
PID patients are susceptible to infections (need isolation) PID patients need a means of identification about their disease eg an ID card number code or mobile app - patient protective isolation especially for emergency doctors
Quality of life QOL is improved by access to diagnosis optimal medical treatment and care information practical advice coping skills emotional support participating in events and being part of the PID community
2 Patient AdvocacyGapsneeds Narrowing the gap - opportunities
Patient needs ldquotimerdquo to challenge the system for government benefits and services also a clear process to access to the health systemFinancial Government CentrelinkSupport chronic care plans pensions carers allowance medicare allied health services
1 There is general confusion about how the health system functions2 Patient uncertainty in completing forms and rejection 3 Govt support is needed for access to care4 Govt support is needed to identify and process assessments for
PIDRD patients in a way that is easily accessible for patients eg an identified numbercode template could be made so patients donrsquot have the demoralising process of pension rejection several times
5 IDFARD has links on their websites for patients to access the health system
Patients need an allied care health package with the above information
National plan for RD could streamline this process by code or appIf this process is streamlined patients who have had the trauma of new diagnosis will not suffer further trauma financially or emotionally
Patients need advocacy and support from a patient organisation
Advocacy projects cannot proceed without human resources or fundsGovt support is needed financially for patient organisations
2 Patient AdvocacyGapsneeds Narrowing the gap - opportunities
Patients amp families need information and support
Support is based on human resources and funding Annual financial support of IDFA would ensure IDFA could produce resources and hold conferences
Patients want a choice oftreatment methods
In regard to Ig ndash patient choice for IVIg or SCIg Treatment process should be easy not complicated Need more Ig nursing practitioners to train patients for SCIg
Patients want less complicated access to hospital services
When being admitted to emergency the doctors on call have not heard of PID A patient ID card or mobile app with disease information would be handy
Lack of awareness in the medical and general community
IDFA promotes rare diseases through media platformSeek grants for World PI Week to produce a newspaper insert news event
Communication between rare disease organisations
Encourage sharing of information and models of care between rare disease groups
IDFA patients not only have a rare disease they also have severe comorbidities and complex chronic health issues
PIDs work within a framework of chronic disease managementRare Disease Health CentresClinics
2 Patient AdvocacyGapsneeds Narrowing the gap - opportunities
Transition from child to adult care
Many agree that the transition from child to adult hospitals and services represents a major gap in patient care Whatever the system is it is failing our adolescent patients This area needs addressing as it is resulting in teen non compliance with treatment resulting in hospitalisation and occasionally death Plans must be put in place for teens with PID entering the adult world Perhaps an app with appointments treatment dates etc or transition conferences where any young adult from any rare disease organisation can attend
3 Patient individual commitmentGapsneeds Narrowing the gap - opportunities
Patients need to commit to their treatment regime This is a life long process As patients are hospitalised regularly many want home based treatment options to reduce hospital admissions
More hospitals to implement SCIg More Ig nursing practioners to train patients for home treatments The implementation of SCIg is too slow Currently for patients on SCIg the patient needs to pick up monthly treatment so no saving is made in regard to travel costs for members Treatments should be accessible from the patientrsquos local hospital and a 3 monthly supply provided
Patients need economic and social inclusion Join patient organisation which provides resources education mentors buddies social support and conferences
4 Organisational commitmentGapsneeds Narrowing the gap - opportunities
Patients carers and families need economic and social inclusion
Closed Facebook pages ndash (adults and YAMS) mentors and buddies newsletters teleconferences National conferencesndash commitment to member services is dependant on human resources and funding
Patients need information and education about their disease and treatment options They are also interested in global issues and access to clinical trials nationally and internationally
Provide resources to assist with PIDs treatments researchIDFA posts all clinical trials white papers journals etc on website sign up for international information
Patients need a Support officer who is available for chats teleconferences and suggestions for practical coping skills
Due to IDFA growth there is more pressure on our PT Support Officer ldquoTalksrdquo and teleconferences are getting further behind as more staff needed - Without funding there is no member services
Patients need current PID information IDFA is associated with ASCIA and attends annual conference President of ASCIA is IDFA Board MAC Chair IDFA has a close relationship with Aust PID Clinicians and nurses
Patients are interested in global research and events
IDFA is associated with IDF (US) IDFNZ amp IPOPI Executive Officer is Treasurer of IPOPI
5 Patient outcomesGapsneeds Narrowing the gap - opportunities
Patients have high levels of stress which puts relationships at risk
Resource kits discussed with new patients can ease the stress of newly diagnosed patients and their families
Patients need to accept their diseaseEmpowering patients leads to positive emotions = improved quality of life
IDFA staff and mentors assist new patients as soon as they join The IDFA closed Facebook group are very kind and empathetic towards new members they feel they are not alone
Education and resources The provision of an IDFA member resource pack provides education and resources for new members
Access to clinical trials Clinical trials are posted in the website and on Facebook
Genetic sequencing assists future decisions Genetic testing is sought through the Immunologist
Patients want to understand their condition and identify with others
Joining the patient organisation makes them part of a community they identify with Patient organisations are only able to assist if they have adequate human andfinancial resources
6 CommunityGapsneeds Narrowing the gap - opportunities
Patients need to feel supported Joining the patient organisation makes them part of a community they identify with Patient organisations are only able to assist with human andfinancial resources No funding = no services
Patients need to feel part of a PID community where they do not feel so isolated and alone
Foster and engage a PID community where members do not feel so isolated and aloneIDFA member mantra is promoted I Donrsquot Feel Alone
Patient organisations foster a sense of community They provide advocacy and organisational commitment which plays a crucial role in patient care economic and social inclusion compliance and quality of life
If patient organisations received annual government funding this could relieve some of the burden of care placed on the health system by patientsIn Sweden at tax time 1 of taxable income (church tax) must be donated to a church or charity of their choice
PID patients need improved quality of life
Lines of communication between the evidence based model of care and the patient centred model of care are necessary for advocacy and to improve patient quality of life Currently ASCIA and IDFA commit to national advocacy campaigns where ASCIA provides evidence based support and IDFA provides patient based support
Recommendation A community focussed model of care where the patient is supported by the evidence based and the patient centred model of care and includes communication between the evidence based model of care and the patient centred model of care to improve quality of life
Specialist medical team(s)
Disease focussed specialist
Hospital treatments
Co-morbidity specialists Patient
support group
Patient needs
Global communication
Patient advocacy Patient
individual commitment
Organisational commitment
Patient outcomes
PID community
PatientMedical team(s)
Hospital medical
identification
Support Emotional financial
community
Patient support group
Transition process
Streamlined access to
Govt assistance
Access to optimal
treatmentCorrect
diagnosis
ASCIA Evidence based model of care
IDFA Patient centred model of care
Community focussed model of careimproves patients quality of life
ContactExecutive Officer Christine Jeffery
Mobile 0409 945 114
Email christinejefferyidfaorgau
A PO Box 969 Penrith NSW 2751
P 1800 100 198
W wwwidfaorgau
ACN 117 585 976
ABN 99 117 585 976
To become a member complete the membership form online httpwwwidfaorgauidfa-membership-patients-families-healthcare-professionals
Example Immunoglobulin treatment methods
1 IVIg in hospital
2 IVIg at home ndashonly a few patients in Australia
Images with permission from Noelene Davies Transfusion Nurse ARCBS presented at IDFA 2013 National Conference
3 SCIg at home 1-3 times a week SCIg assists in maintaining trough levels therefore improving patient health and reducing infections and hospitalisation
This consultant also trains other nurses eg Melbourne has a nurse 25 days per week to train and monitor patients at the Royal Childrenrsquos Hospital Royal Melbourne Alfred and Monash Medical Centre and a few patients in Tasmania
At the Childrenrsquos Hospital Westmead NSW the Immunologist trains parents in the use of SCIg
IDFA endorses patient choice of treatment in consultation with their Immunologist Question If you had the choice to have your treatment at home helliphellip would you
South Australia is the only State with a full time immunology advanced clinical practice consultant (innovative approach for Australia) who trains and monitors patients in the use of SCIg and home IVIg
Example of IDFArsquos model of care Patient choice of Immunoglobulin replacement therapy intravenous immunoglobulin (IVIg) or subcutaneous immunoglobulin (SCIg)
3 Patient commitment
5 Patient outcomes
4 Organisational commitment
6 PID community
2 Patient advocacy
1 Patient needs
IDFA in conjunction with ASCIA campaign for SCIg approval by
NBA
Improved quality of life(better trough levels home
based therapy)
NBA approved SCIg as a treatment choice
IDFA commits to social amp economic inclusion + global information ndash (SCIg used
for 20 years in Europe)
Patient must comply with treatment regime
Choice of Ig treatment options
1 Patient needsPatient Gapsneeds Narrowing the gap - opportunities
A correct diagnosis amp management by Clinician (validation of symptoms)
IDFA continues to raise awareness in the medical community about PIDs Early diagnosis and treatment improves quality of life
Access to optimal treatment options As a ldquodevelopedrdquo nation Australia needs to reduce ldquored taperdquo for treatment options
Education and resources to understand their disease
If Immunologists and transfusion units gave patients IDFA contact details they could access resources and other PID patients to help their journey
Loneliness isolation emotionalsupport communication with other PID patients
Patient organisations can provide emotional support through the PID buddies and mentors system but there needs to be access for patients to other allied health services (psychological physio pumps consumables) that are free
GP Medical Hospital education about condition (frequent hospitalisation)
PID patients are susceptible to infections (need isolation) PID patients need a means of identification about their disease eg an ID card number code or mobile app - patient protective isolation especially for emergency doctors
Quality of life QOL is improved by access to diagnosis optimal medical treatment and care information practical advice coping skills emotional support participating in events and being part of the PID community
2 Patient AdvocacyGapsneeds Narrowing the gap - opportunities
Patient needs ldquotimerdquo to challenge the system for government benefits and services also a clear process to access to the health systemFinancial Government CentrelinkSupport chronic care plans pensions carers allowance medicare allied health services
1 There is general confusion about how the health system functions2 Patient uncertainty in completing forms and rejection 3 Govt support is needed for access to care4 Govt support is needed to identify and process assessments for
PIDRD patients in a way that is easily accessible for patients eg an identified numbercode template could be made so patients donrsquot have the demoralising process of pension rejection several times
5 IDFARD has links on their websites for patients to access the health system
Patients need an allied care health package with the above information
National plan for RD could streamline this process by code or appIf this process is streamlined patients who have had the trauma of new diagnosis will not suffer further trauma financially or emotionally
Patients need advocacy and support from a patient organisation
Advocacy projects cannot proceed without human resources or fundsGovt support is needed financially for patient organisations
2 Patient AdvocacyGapsneeds Narrowing the gap - opportunities
Patients amp families need information and support
Support is based on human resources and funding Annual financial support of IDFA would ensure IDFA could produce resources and hold conferences
Patients want a choice oftreatment methods
In regard to Ig ndash patient choice for IVIg or SCIg Treatment process should be easy not complicated Need more Ig nursing practitioners to train patients for SCIg
Patients want less complicated access to hospital services
When being admitted to emergency the doctors on call have not heard of PID A patient ID card or mobile app with disease information would be handy
Lack of awareness in the medical and general community
IDFA promotes rare diseases through media platformSeek grants for World PI Week to produce a newspaper insert news event
Communication between rare disease organisations
Encourage sharing of information and models of care between rare disease groups
IDFA patients not only have a rare disease they also have severe comorbidities and complex chronic health issues
PIDs work within a framework of chronic disease managementRare Disease Health CentresClinics
2 Patient AdvocacyGapsneeds Narrowing the gap - opportunities
Transition from child to adult care
Many agree that the transition from child to adult hospitals and services represents a major gap in patient care Whatever the system is it is failing our adolescent patients This area needs addressing as it is resulting in teen non compliance with treatment resulting in hospitalisation and occasionally death Plans must be put in place for teens with PID entering the adult world Perhaps an app with appointments treatment dates etc or transition conferences where any young adult from any rare disease organisation can attend
3 Patient individual commitmentGapsneeds Narrowing the gap - opportunities
Patients need to commit to their treatment regime This is a life long process As patients are hospitalised regularly many want home based treatment options to reduce hospital admissions
More hospitals to implement SCIg More Ig nursing practioners to train patients for home treatments The implementation of SCIg is too slow Currently for patients on SCIg the patient needs to pick up monthly treatment so no saving is made in regard to travel costs for members Treatments should be accessible from the patientrsquos local hospital and a 3 monthly supply provided
Patients need economic and social inclusion Join patient organisation which provides resources education mentors buddies social support and conferences
4 Organisational commitmentGapsneeds Narrowing the gap - opportunities
Patients carers and families need economic and social inclusion
Closed Facebook pages ndash (adults and YAMS) mentors and buddies newsletters teleconferences National conferencesndash commitment to member services is dependant on human resources and funding
Patients need information and education about their disease and treatment options They are also interested in global issues and access to clinical trials nationally and internationally
Provide resources to assist with PIDs treatments researchIDFA posts all clinical trials white papers journals etc on website sign up for international information
Patients need a Support officer who is available for chats teleconferences and suggestions for practical coping skills
Due to IDFA growth there is more pressure on our PT Support Officer ldquoTalksrdquo and teleconferences are getting further behind as more staff needed - Without funding there is no member services
Patients need current PID information IDFA is associated with ASCIA and attends annual conference President of ASCIA is IDFA Board MAC Chair IDFA has a close relationship with Aust PID Clinicians and nurses
Patients are interested in global research and events
IDFA is associated with IDF (US) IDFNZ amp IPOPI Executive Officer is Treasurer of IPOPI
5 Patient outcomesGapsneeds Narrowing the gap - opportunities
Patients have high levels of stress which puts relationships at risk
Resource kits discussed with new patients can ease the stress of newly diagnosed patients and their families
Patients need to accept their diseaseEmpowering patients leads to positive emotions = improved quality of life
IDFA staff and mentors assist new patients as soon as they join The IDFA closed Facebook group are very kind and empathetic towards new members they feel they are not alone
Education and resources The provision of an IDFA member resource pack provides education and resources for new members
Access to clinical trials Clinical trials are posted in the website and on Facebook
Genetic sequencing assists future decisions Genetic testing is sought through the Immunologist
Patients want to understand their condition and identify with others
Joining the patient organisation makes them part of a community they identify with Patient organisations are only able to assist if they have adequate human andfinancial resources
6 CommunityGapsneeds Narrowing the gap - opportunities
Patients need to feel supported Joining the patient organisation makes them part of a community they identify with Patient organisations are only able to assist with human andfinancial resources No funding = no services
Patients need to feel part of a PID community where they do not feel so isolated and alone
Foster and engage a PID community where members do not feel so isolated and aloneIDFA member mantra is promoted I Donrsquot Feel Alone
Patient organisations foster a sense of community They provide advocacy and organisational commitment which plays a crucial role in patient care economic and social inclusion compliance and quality of life
If patient organisations received annual government funding this could relieve some of the burden of care placed on the health system by patientsIn Sweden at tax time 1 of taxable income (church tax) must be donated to a church or charity of their choice
PID patients need improved quality of life
Lines of communication between the evidence based model of care and the patient centred model of care are necessary for advocacy and to improve patient quality of life Currently ASCIA and IDFA commit to national advocacy campaigns where ASCIA provides evidence based support and IDFA provides patient based support
Recommendation A community focussed model of care where the patient is supported by the evidence based and the patient centred model of care and includes communication between the evidence based model of care and the patient centred model of care to improve quality of life
Specialist medical team(s)
Disease focussed specialist
Hospital treatments
Co-morbidity specialists Patient
support group
Patient needs
Global communication
Patient advocacy Patient
individual commitment
Organisational commitment
Patient outcomes
PID community
PatientMedical team(s)
Hospital medical
identification
Support Emotional financial
community
Patient support group
Transition process
Streamlined access to
Govt assistance
Access to optimal
treatmentCorrect
diagnosis
ASCIA Evidence based model of care
IDFA Patient centred model of care
Community focussed model of careimproves patients quality of life
ContactExecutive Officer Christine Jeffery
Mobile 0409 945 114
Email christinejefferyidfaorgau
A PO Box 969 Penrith NSW 2751
P 1800 100 198
W wwwidfaorgau
ACN 117 585 976
ABN 99 117 585 976
To become a member complete the membership form online httpwwwidfaorgauidfa-membership-patients-families-healthcare-professionals
Example of IDFArsquos model of care Patient choice of Immunoglobulin replacement therapy intravenous immunoglobulin (IVIg) or subcutaneous immunoglobulin (SCIg)
3 Patient commitment
5 Patient outcomes
4 Organisational commitment
6 PID community
2 Patient advocacy
1 Patient needs
IDFA in conjunction with ASCIA campaign for SCIg approval by
NBA
Improved quality of life(better trough levels home
based therapy)
NBA approved SCIg as a treatment choice
IDFA commits to social amp economic inclusion + global information ndash (SCIg used
for 20 years in Europe)
Patient must comply with treatment regime
Choice of Ig treatment options
1 Patient needsPatient Gapsneeds Narrowing the gap - opportunities
A correct diagnosis amp management by Clinician (validation of symptoms)
IDFA continues to raise awareness in the medical community about PIDs Early diagnosis and treatment improves quality of life
Access to optimal treatment options As a ldquodevelopedrdquo nation Australia needs to reduce ldquored taperdquo for treatment options
Education and resources to understand their disease
If Immunologists and transfusion units gave patients IDFA contact details they could access resources and other PID patients to help their journey
Loneliness isolation emotionalsupport communication with other PID patients
Patient organisations can provide emotional support through the PID buddies and mentors system but there needs to be access for patients to other allied health services (psychological physio pumps consumables) that are free
GP Medical Hospital education about condition (frequent hospitalisation)
PID patients are susceptible to infections (need isolation) PID patients need a means of identification about their disease eg an ID card number code or mobile app - patient protective isolation especially for emergency doctors
Quality of life QOL is improved by access to diagnosis optimal medical treatment and care information practical advice coping skills emotional support participating in events and being part of the PID community
2 Patient AdvocacyGapsneeds Narrowing the gap - opportunities
Patient needs ldquotimerdquo to challenge the system for government benefits and services also a clear process to access to the health systemFinancial Government CentrelinkSupport chronic care plans pensions carers allowance medicare allied health services
1 There is general confusion about how the health system functions2 Patient uncertainty in completing forms and rejection 3 Govt support is needed for access to care4 Govt support is needed to identify and process assessments for
PIDRD patients in a way that is easily accessible for patients eg an identified numbercode template could be made so patients donrsquot have the demoralising process of pension rejection several times
5 IDFARD has links on their websites for patients to access the health system
Patients need an allied care health package with the above information
National plan for RD could streamline this process by code or appIf this process is streamlined patients who have had the trauma of new diagnosis will not suffer further trauma financially or emotionally
Patients need advocacy and support from a patient organisation
Advocacy projects cannot proceed without human resources or fundsGovt support is needed financially for patient organisations
2 Patient AdvocacyGapsneeds Narrowing the gap - opportunities
Patients amp families need information and support
Support is based on human resources and funding Annual financial support of IDFA would ensure IDFA could produce resources and hold conferences
Patients want a choice oftreatment methods
In regard to Ig ndash patient choice for IVIg or SCIg Treatment process should be easy not complicated Need more Ig nursing practitioners to train patients for SCIg
Patients want less complicated access to hospital services
When being admitted to emergency the doctors on call have not heard of PID A patient ID card or mobile app with disease information would be handy
Lack of awareness in the medical and general community
IDFA promotes rare diseases through media platformSeek grants for World PI Week to produce a newspaper insert news event
Communication between rare disease organisations
Encourage sharing of information and models of care between rare disease groups
IDFA patients not only have a rare disease they also have severe comorbidities and complex chronic health issues
PIDs work within a framework of chronic disease managementRare Disease Health CentresClinics
2 Patient AdvocacyGapsneeds Narrowing the gap - opportunities
Transition from child to adult care
Many agree that the transition from child to adult hospitals and services represents a major gap in patient care Whatever the system is it is failing our adolescent patients This area needs addressing as it is resulting in teen non compliance with treatment resulting in hospitalisation and occasionally death Plans must be put in place for teens with PID entering the adult world Perhaps an app with appointments treatment dates etc or transition conferences where any young adult from any rare disease organisation can attend
3 Patient individual commitmentGapsneeds Narrowing the gap - opportunities
Patients need to commit to their treatment regime This is a life long process As patients are hospitalised regularly many want home based treatment options to reduce hospital admissions
More hospitals to implement SCIg More Ig nursing practioners to train patients for home treatments The implementation of SCIg is too slow Currently for patients on SCIg the patient needs to pick up monthly treatment so no saving is made in regard to travel costs for members Treatments should be accessible from the patientrsquos local hospital and a 3 monthly supply provided
Patients need economic and social inclusion Join patient organisation which provides resources education mentors buddies social support and conferences
4 Organisational commitmentGapsneeds Narrowing the gap - opportunities
Patients carers and families need economic and social inclusion
Closed Facebook pages ndash (adults and YAMS) mentors and buddies newsletters teleconferences National conferencesndash commitment to member services is dependant on human resources and funding
Patients need information and education about their disease and treatment options They are also interested in global issues and access to clinical trials nationally and internationally
Provide resources to assist with PIDs treatments researchIDFA posts all clinical trials white papers journals etc on website sign up for international information
Patients need a Support officer who is available for chats teleconferences and suggestions for practical coping skills
Due to IDFA growth there is more pressure on our PT Support Officer ldquoTalksrdquo and teleconferences are getting further behind as more staff needed - Without funding there is no member services
Patients need current PID information IDFA is associated with ASCIA and attends annual conference President of ASCIA is IDFA Board MAC Chair IDFA has a close relationship with Aust PID Clinicians and nurses
Patients are interested in global research and events
IDFA is associated with IDF (US) IDFNZ amp IPOPI Executive Officer is Treasurer of IPOPI
5 Patient outcomesGapsneeds Narrowing the gap - opportunities
Patients have high levels of stress which puts relationships at risk
Resource kits discussed with new patients can ease the stress of newly diagnosed patients and their families
Patients need to accept their diseaseEmpowering patients leads to positive emotions = improved quality of life
IDFA staff and mentors assist new patients as soon as they join The IDFA closed Facebook group are very kind and empathetic towards new members they feel they are not alone
Education and resources The provision of an IDFA member resource pack provides education and resources for new members
Access to clinical trials Clinical trials are posted in the website and on Facebook
Genetic sequencing assists future decisions Genetic testing is sought through the Immunologist
Patients want to understand their condition and identify with others
Joining the patient organisation makes them part of a community they identify with Patient organisations are only able to assist if they have adequate human andfinancial resources
6 CommunityGapsneeds Narrowing the gap - opportunities
Patients need to feel supported Joining the patient organisation makes them part of a community they identify with Patient organisations are only able to assist with human andfinancial resources No funding = no services
Patients need to feel part of a PID community where they do not feel so isolated and alone
Foster and engage a PID community where members do not feel so isolated and aloneIDFA member mantra is promoted I Donrsquot Feel Alone
Patient organisations foster a sense of community They provide advocacy and organisational commitment which plays a crucial role in patient care economic and social inclusion compliance and quality of life
If patient organisations received annual government funding this could relieve some of the burden of care placed on the health system by patientsIn Sweden at tax time 1 of taxable income (church tax) must be donated to a church or charity of their choice
PID patients need improved quality of life
Lines of communication between the evidence based model of care and the patient centred model of care are necessary for advocacy and to improve patient quality of life Currently ASCIA and IDFA commit to national advocacy campaigns where ASCIA provides evidence based support and IDFA provides patient based support
Recommendation A community focussed model of care where the patient is supported by the evidence based and the patient centred model of care and includes communication between the evidence based model of care and the patient centred model of care to improve quality of life
Specialist medical team(s)
Disease focussed specialist
Hospital treatments
Co-morbidity specialists Patient
support group
Patient needs
Global communication
Patient advocacy Patient
individual commitment
Organisational commitment
Patient outcomes
PID community
PatientMedical team(s)
Hospital medical
identification
Support Emotional financial
community
Patient support group
Transition process
Streamlined access to
Govt assistance
Access to optimal
treatmentCorrect
diagnosis
ASCIA Evidence based model of care
IDFA Patient centred model of care
Community focussed model of careimproves patients quality of life
ContactExecutive Officer Christine Jeffery
Mobile 0409 945 114
Email christinejefferyidfaorgau
A PO Box 969 Penrith NSW 2751
P 1800 100 198
W wwwidfaorgau
ACN 117 585 976
ABN 99 117 585 976
To become a member complete the membership form online httpwwwidfaorgauidfa-membership-patients-families-healthcare-professionals
1 Patient needsPatient Gapsneeds Narrowing the gap - opportunities
A correct diagnosis amp management by Clinician (validation of symptoms)
IDFA continues to raise awareness in the medical community about PIDs Early diagnosis and treatment improves quality of life
Access to optimal treatment options As a ldquodevelopedrdquo nation Australia needs to reduce ldquored taperdquo for treatment options
Education and resources to understand their disease
If Immunologists and transfusion units gave patients IDFA contact details they could access resources and other PID patients to help their journey
Loneliness isolation emotionalsupport communication with other PID patients
Patient organisations can provide emotional support through the PID buddies and mentors system but there needs to be access for patients to other allied health services (psychological physio pumps consumables) that are free
GP Medical Hospital education about condition (frequent hospitalisation)
PID patients are susceptible to infections (need isolation) PID patients need a means of identification about their disease eg an ID card number code or mobile app - patient protective isolation especially for emergency doctors
Quality of life QOL is improved by access to diagnosis optimal medical treatment and care information practical advice coping skills emotional support participating in events and being part of the PID community
2 Patient AdvocacyGapsneeds Narrowing the gap - opportunities
Patient needs ldquotimerdquo to challenge the system for government benefits and services also a clear process to access to the health systemFinancial Government CentrelinkSupport chronic care plans pensions carers allowance medicare allied health services
1 There is general confusion about how the health system functions2 Patient uncertainty in completing forms and rejection 3 Govt support is needed for access to care4 Govt support is needed to identify and process assessments for
PIDRD patients in a way that is easily accessible for patients eg an identified numbercode template could be made so patients donrsquot have the demoralising process of pension rejection several times
5 IDFARD has links on their websites for patients to access the health system
Patients need an allied care health package with the above information
National plan for RD could streamline this process by code or appIf this process is streamlined patients who have had the trauma of new diagnosis will not suffer further trauma financially or emotionally
Patients need advocacy and support from a patient organisation
Advocacy projects cannot proceed without human resources or fundsGovt support is needed financially for patient organisations
2 Patient AdvocacyGapsneeds Narrowing the gap - opportunities
Patients amp families need information and support
Support is based on human resources and funding Annual financial support of IDFA would ensure IDFA could produce resources and hold conferences
Patients want a choice oftreatment methods
In regard to Ig ndash patient choice for IVIg or SCIg Treatment process should be easy not complicated Need more Ig nursing practitioners to train patients for SCIg
Patients want less complicated access to hospital services
When being admitted to emergency the doctors on call have not heard of PID A patient ID card or mobile app with disease information would be handy
Lack of awareness in the medical and general community
IDFA promotes rare diseases through media platformSeek grants for World PI Week to produce a newspaper insert news event
Communication between rare disease organisations
Encourage sharing of information and models of care between rare disease groups
IDFA patients not only have a rare disease they also have severe comorbidities and complex chronic health issues
PIDs work within a framework of chronic disease managementRare Disease Health CentresClinics
2 Patient AdvocacyGapsneeds Narrowing the gap - opportunities
Transition from child to adult care
Many agree that the transition from child to adult hospitals and services represents a major gap in patient care Whatever the system is it is failing our adolescent patients This area needs addressing as it is resulting in teen non compliance with treatment resulting in hospitalisation and occasionally death Plans must be put in place for teens with PID entering the adult world Perhaps an app with appointments treatment dates etc or transition conferences where any young adult from any rare disease organisation can attend
3 Patient individual commitmentGapsneeds Narrowing the gap - opportunities
Patients need to commit to their treatment regime This is a life long process As patients are hospitalised regularly many want home based treatment options to reduce hospital admissions
More hospitals to implement SCIg More Ig nursing practioners to train patients for home treatments The implementation of SCIg is too slow Currently for patients on SCIg the patient needs to pick up monthly treatment so no saving is made in regard to travel costs for members Treatments should be accessible from the patientrsquos local hospital and a 3 monthly supply provided
Patients need economic and social inclusion Join patient organisation which provides resources education mentors buddies social support and conferences
4 Organisational commitmentGapsneeds Narrowing the gap - opportunities
Patients carers and families need economic and social inclusion
Closed Facebook pages ndash (adults and YAMS) mentors and buddies newsletters teleconferences National conferencesndash commitment to member services is dependant on human resources and funding
Patients need information and education about their disease and treatment options They are also interested in global issues and access to clinical trials nationally and internationally
Provide resources to assist with PIDs treatments researchIDFA posts all clinical trials white papers journals etc on website sign up for international information
Patients need a Support officer who is available for chats teleconferences and suggestions for practical coping skills
Due to IDFA growth there is more pressure on our PT Support Officer ldquoTalksrdquo and teleconferences are getting further behind as more staff needed - Without funding there is no member services
Patients need current PID information IDFA is associated with ASCIA and attends annual conference President of ASCIA is IDFA Board MAC Chair IDFA has a close relationship with Aust PID Clinicians and nurses
Patients are interested in global research and events
IDFA is associated with IDF (US) IDFNZ amp IPOPI Executive Officer is Treasurer of IPOPI
5 Patient outcomesGapsneeds Narrowing the gap - opportunities
Patients have high levels of stress which puts relationships at risk
Resource kits discussed with new patients can ease the stress of newly diagnosed patients and their families
Patients need to accept their diseaseEmpowering patients leads to positive emotions = improved quality of life
IDFA staff and mentors assist new patients as soon as they join The IDFA closed Facebook group are very kind and empathetic towards new members they feel they are not alone
Education and resources The provision of an IDFA member resource pack provides education and resources for new members
Access to clinical trials Clinical trials are posted in the website and on Facebook
Genetic sequencing assists future decisions Genetic testing is sought through the Immunologist
Patients want to understand their condition and identify with others
Joining the patient organisation makes them part of a community they identify with Patient organisations are only able to assist if they have adequate human andfinancial resources
6 CommunityGapsneeds Narrowing the gap - opportunities
Patients need to feel supported Joining the patient organisation makes them part of a community they identify with Patient organisations are only able to assist with human andfinancial resources No funding = no services
Patients need to feel part of a PID community where they do not feel so isolated and alone
Foster and engage a PID community where members do not feel so isolated and aloneIDFA member mantra is promoted I Donrsquot Feel Alone
Patient organisations foster a sense of community They provide advocacy and organisational commitment which plays a crucial role in patient care economic and social inclusion compliance and quality of life
If patient organisations received annual government funding this could relieve some of the burden of care placed on the health system by patientsIn Sweden at tax time 1 of taxable income (church tax) must be donated to a church or charity of their choice
PID patients need improved quality of life
Lines of communication between the evidence based model of care and the patient centred model of care are necessary for advocacy and to improve patient quality of life Currently ASCIA and IDFA commit to national advocacy campaigns where ASCIA provides evidence based support and IDFA provides patient based support
Recommendation A community focussed model of care where the patient is supported by the evidence based and the patient centred model of care and includes communication between the evidence based model of care and the patient centred model of care to improve quality of life
Specialist medical team(s)
Disease focussed specialist
Hospital treatments
Co-morbidity specialists Patient
support group
Patient needs
Global communication
Patient advocacy Patient
individual commitment
Organisational commitment
Patient outcomes
PID community
PatientMedical team(s)
Hospital medical
identification
Support Emotional financial
community
Patient support group
Transition process
Streamlined access to
Govt assistance
Access to optimal
treatmentCorrect
diagnosis
ASCIA Evidence based model of care
IDFA Patient centred model of care
Community focussed model of careimproves patients quality of life
ContactExecutive Officer Christine Jeffery
Mobile 0409 945 114
Email christinejefferyidfaorgau
A PO Box 969 Penrith NSW 2751
P 1800 100 198
W wwwidfaorgau
ACN 117 585 976
ABN 99 117 585 976
To become a member complete the membership form online httpwwwidfaorgauidfa-membership-patients-families-healthcare-professionals
2 Patient AdvocacyGapsneeds Narrowing the gap - opportunities
Patient needs ldquotimerdquo to challenge the system for government benefits and services also a clear process to access to the health systemFinancial Government CentrelinkSupport chronic care plans pensions carers allowance medicare allied health services
1 There is general confusion about how the health system functions2 Patient uncertainty in completing forms and rejection 3 Govt support is needed for access to care4 Govt support is needed to identify and process assessments for
PIDRD patients in a way that is easily accessible for patients eg an identified numbercode template could be made so patients donrsquot have the demoralising process of pension rejection several times
5 IDFARD has links on their websites for patients to access the health system
Patients need an allied care health package with the above information
National plan for RD could streamline this process by code or appIf this process is streamlined patients who have had the trauma of new diagnosis will not suffer further trauma financially or emotionally
Patients need advocacy and support from a patient organisation
Advocacy projects cannot proceed without human resources or fundsGovt support is needed financially for patient organisations
2 Patient AdvocacyGapsneeds Narrowing the gap - opportunities
Patients amp families need information and support
Support is based on human resources and funding Annual financial support of IDFA would ensure IDFA could produce resources and hold conferences
Patients want a choice oftreatment methods
In regard to Ig ndash patient choice for IVIg or SCIg Treatment process should be easy not complicated Need more Ig nursing practitioners to train patients for SCIg
Patients want less complicated access to hospital services
When being admitted to emergency the doctors on call have not heard of PID A patient ID card or mobile app with disease information would be handy
Lack of awareness in the medical and general community
IDFA promotes rare diseases through media platformSeek grants for World PI Week to produce a newspaper insert news event
Communication between rare disease organisations
Encourage sharing of information and models of care between rare disease groups
IDFA patients not only have a rare disease they also have severe comorbidities and complex chronic health issues
PIDs work within a framework of chronic disease managementRare Disease Health CentresClinics
2 Patient AdvocacyGapsneeds Narrowing the gap - opportunities
Transition from child to adult care
Many agree that the transition from child to adult hospitals and services represents a major gap in patient care Whatever the system is it is failing our adolescent patients This area needs addressing as it is resulting in teen non compliance with treatment resulting in hospitalisation and occasionally death Plans must be put in place for teens with PID entering the adult world Perhaps an app with appointments treatment dates etc or transition conferences where any young adult from any rare disease organisation can attend
3 Patient individual commitmentGapsneeds Narrowing the gap - opportunities
Patients need to commit to their treatment regime This is a life long process As patients are hospitalised regularly many want home based treatment options to reduce hospital admissions
More hospitals to implement SCIg More Ig nursing practioners to train patients for home treatments The implementation of SCIg is too slow Currently for patients on SCIg the patient needs to pick up monthly treatment so no saving is made in regard to travel costs for members Treatments should be accessible from the patientrsquos local hospital and a 3 monthly supply provided
Patients need economic and social inclusion Join patient organisation which provides resources education mentors buddies social support and conferences
4 Organisational commitmentGapsneeds Narrowing the gap - opportunities
Patients carers and families need economic and social inclusion
Closed Facebook pages ndash (adults and YAMS) mentors and buddies newsletters teleconferences National conferencesndash commitment to member services is dependant on human resources and funding
Patients need information and education about their disease and treatment options They are also interested in global issues and access to clinical trials nationally and internationally
Provide resources to assist with PIDs treatments researchIDFA posts all clinical trials white papers journals etc on website sign up for international information
Patients need a Support officer who is available for chats teleconferences and suggestions for practical coping skills
Due to IDFA growth there is more pressure on our PT Support Officer ldquoTalksrdquo and teleconferences are getting further behind as more staff needed - Without funding there is no member services
Patients need current PID information IDFA is associated with ASCIA and attends annual conference President of ASCIA is IDFA Board MAC Chair IDFA has a close relationship with Aust PID Clinicians and nurses
Patients are interested in global research and events
IDFA is associated with IDF (US) IDFNZ amp IPOPI Executive Officer is Treasurer of IPOPI
5 Patient outcomesGapsneeds Narrowing the gap - opportunities
Patients have high levels of stress which puts relationships at risk
Resource kits discussed with new patients can ease the stress of newly diagnosed patients and their families
Patients need to accept their diseaseEmpowering patients leads to positive emotions = improved quality of life
IDFA staff and mentors assist new patients as soon as they join The IDFA closed Facebook group are very kind and empathetic towards new members they feel they are not alone
Education and resources The provision of an IDFA member resource pack provides education and resources for new members
Access to clinical trials Clinical trials are posted in the website and on Facebook
Genetic sequencing assists future decisions Genetic testing is sought through the Immunologist
Patients want to understand their condition and identify with others
Joining the patient organisation makes them part of a community they identify with Patient organisations are only able to assist if they have adequate human andfinancial resources
6 CommunityGapsneeds Narrowing the gap - opportunities
Patients need to feel supported Joining the patient organisation makes them part of a community they identify with Patient organisations are only able to assist with human andfinancial resources No funding = no services
Patients need to feel part of a PID community where they do not feel so isolated and alone
Foster and engage a PID community where members do not feel so isolated and aloneIDFA member mantra is promoted I Donrsquot Feel Alone
Patient organisations foster a sense of community They provide advocacy and organisational commitment which plays a crucial role in patient care economic and social inclusion compliance and quality of life
If patient organisations received annual government funding this could relieve some of the burden of care placed on the health system by patientsIn Sweden at tax time 1 of taxable income (church tax) must be donated to a church or charity of their choice
PID patients need improved quality of life
Lines of communication between the evidence based model of care and the patient centred model of care are necessary for advocacy and to improve patient quality of life Currently ASCIA and IDFA commit to national advocacy campaigns where ASCIA provides evidence based support and IDFA provides patient based support
Recommendation A community focussed model of care where the patient is supported by the evidence based and the patient centred model of care and includes communication between the evidence based model of care and the patient centred model of care to improve quality of life
Specialist medical team(s)
Disease focussed specialist
Hospital treatments
Co-morbidity specialists Patient
support group
Patient needs
Global communication
Patient advocacy Patient
individual commitment
Organisational commitment
Patient outcomes
PID community
PatientMedical team(s)
Hospital medical
identification
Support Emotional financial
community
Patient support group
Transition process
Streamlined access to
Govt assistance
Access to optimal
treatmentCorrect
diagnosis
ASCIA Evidence based model of care
IDFA Patient centred model of care
Community focussed model of careimproves patients quality of life
ContactExecutive Officer Christine Jeffery
Mobile 0409 945 114
Email christinejefferyidfaorgau
A PO Box 969 Penrith NSW 2751
P 1800 100 198
W wwwidfaorgau
ACN 117 585 976
ABN 99 117 585 976
To become a member complete the membership form online httpwwwidfaorgauidfa-membership-patients-families-healthcare-professionals
2 Patient AdvocacyGapsneeds Narrowing the gap - opportunities
Patients amp families need information and support
Support is based on human resources and funding Annual financial support of IDFA would ensure IDFA could produce resources and hold conferences
Patients want a choice oftreatment methods
In regard to Ig ndash patient choice for IVIg or SCIg Treatment process should be easy not complicated Need more Ig nursing practitioners to train patients for SCIg
Patients want less complicated access to hospital services
When being admitted to emergency the doctors on call have not heard of PID A patient ID card or mobile app with disease information would be handy
Lack of awareness in the medical and general community
IDFA promotes rare diseases through media platformSeek grants for World PI Week to produce a newspaper insert news event
Communication between rare disease organisations
Encourage sharing of information and models of care between rare disease groups
IDFA patients not only have a rare disease they also have severe comorbidities and complex chronic health issues
PIDs work within a framework of chronic disease managementRare Disease Health CentresClinics
2 Patient AdvocacyGapsneeds Narrowing the gap - opportunities
Transition from child to adult care
Many agree that the transition from child to adult hospitals and services represents a major gap in patient care Whatever the system is it is failing our adolescent patients This area needs addressing as it is resulting in teen non compliance with treatment resulting in hospitalisation and occasionally death Plans must be put in place for teens with PID entering the adult world Perhaps an app with appointments treatment dates etc or transition conferences where any young adult from any rare disease organisation can attend
3 Patient individual commitmentGapsneeds Narrowing the gap - opportunities
Patients need to commit to their treatment regime This is a life long process As patients are hospitalised regularly many want home based treatment options to reduce hospital admissions
More hospitals to implement SCIg More Ig nursing practioners to train patients for home treatments The implementation of SCIg is too slow Currently for patients on SCIg the patient needs to pick up monthly treatment so no saving is made in regard to travel costs for members Treatments should be accessible from the patientrsquos local hospital and a 3 monthly supply provided
Patients need economic and social inclusion Join patient organisation which provides resources education mentors buddies social support and conferences
4 Organisational commitmentGapsneeds Narrowing the gap - opportunities
Patients carers and families need economic and social inclusion
Closed Facebook pages ndash (adults and YAMS) mentors and buddies newsletters teleconferences National conferencesndash commitment to member services is dependant on human resources and funding
Patients need information and education about their disease and treatment options They are also interested in global issues and access to clinical trials nationally and internationally
Provide resources to assist with PIDs treatments researchIDFA posts all clinical trials white papers journals etc on website sign up for international information
Patients need a Support officer who is available for chats teleconferences and suggestions for practical coping skills
Due to IDFA growth there is more pressure on our PT Support Officer ldquoTalksrdquo and teleconferences are getting further behind as more staff needed - Without funding there is no member services
Patients need current PID information IDFA is associated with ASCIA and attends annual conference President of ASCIA is IDFA Board MAC Chair IDFA has a close relationship with Aust PID Clinicians and nurses
Patients are interested in global research and events
IDFA is associated with IDF (US) IDFNZ amp IPOPI Executive Officer is Treasurer of IPOPI
5 Patient outcomesGapsneeds Narrowing the gap - opportunities
Patients have high levels of stress which puts relationships at risk
Resource kits discussed with new patients can ease the stress of newly diagnosed patients and their families
Patients need to accept their diseaseEmpowering patients leads to positive emotions = improved quality of life
IDFA staff and mentors assist new patients as soon as they join The IDFA closed Facebook group are very kind and empathetic towards new members they feel they are not alone
Education and resources The provision of an IDFA member resource pack provides education and resources for new members
Access to clinical trials Clinical trials are posted in the website and on Facebook
Genetic sequencing assists future decisions Genetic testing is sought through the Immunologist
Patients want to understand their condition and identify with others
Joining the patient organisation makes them part of a community they identify with Patient organisations are only able to assist if they have adequate human andfinancial resources
6 CommunityGapsneeds Narrowing the gap - opportunities
Patients need to feel supported Joining the patient organisation makes them part of a community they identify with Patient organisations are only able to assist with human andfinancial resources No funding = no services
Patients need to feel part of a PID community where they do not feel so isolated and alone
Foster and engage a PID community where members do not feel so isolated and aloneIDFA member mantra is promoted I Donrsquot Feel Alone
Patient organisations foster a sense of community They provide advocacy and organisational commitment which plays a crucial role in patient care economic and social inclusion compliance and quality of life
If patient organisations received annual government funding this could relieve some of the burden of care placed on the health system by patientsIn Sweden at tax time 1 of taxable income (church tax) must be donated to a church or charity of their choice
PID patients need improved quality of life
Lines of communication between the evidence based model of care and the patient centred model of care are necessary for advocacy and to improve patient quality of life Currently ASCIA and IDFA commit to national advocacy campaigns where ASCIA provides evidence based support and IDFA provides patient based support
Recommendation A community focussed model of care where the patient is supported by the evidence based and the patient centred model of care and includes communication between the evidence based model of care and the patient centred model of care to improve quality of life
Specialist medical team(s)
Disease focussed specialist
Hospital treatments
Co-morbidity specialists Patient
support group
Patient needs
Global communication
Patient advocacy Patient
individual commitment
Organisational commitment
Patient outcomes
PID community
PatientMedical team(s)
Hospital medical
identification
Support Emotional financial
community
Patient support group
Transition process
Streamlined access to
Govt assistance
Access to optimal
treatmentCorrect
diagnosis
ASCIA Evidence based model of care
IDFA Patient centred model of care
Community focussed model of careimproves patients quality of life
ContactExecutive Officer Christine Jeffery
Mobile 0409 945 114
Email christinejefferyidfaorgau
A PO Box 969 Penrith NSW 2751
P 1800 100 198
W wwwidfaorgau
ACN 117 585 976
ABN 99 117 585 976
To become a member complete the membership form online httpwwwidfaorgauidfa-membership-patients-families-healthcare-professionals
2 Patient AdvocacyGapsneeds Narrowing the gap - opportunities
Transition from child to adult care
Many agree that the transition from child to adult hospitals and services represents a major gap in patient care Whatever the system is it is failing our adolescent patients This area needs addressing as it is resulting in teen non compliance with treatment resulting in hospitalisation and occasionally death Plans must be put in place for teens with PID entering the adult world Perhaps an app with appointments treatment dates etc or transition conferences where any young adult from any rare disease organisation can attend
3 Patient individual commitmentGapsneeds Narrowing the gap - opportunities
Patients need to commit to their treatment regime This is a life long process As patients are hospitalised regularly many want home based treatment options to reduce hospital admissions
More hospitals to implement SCIg More Ig nursing practioners to train patients for home treatments The implementation of SCIg is too slow Currently for patients on SCIg the patient needs to pick up monthly treatment so no saving is made in regard to travel costs for members Treatments should be accessible from the patientrsquos local hospital and a 3 monthly supply provided
Patients need economic and social inclusion Join patient organisation which provides resources education mentors buddies social support and conferences
4 Organisational commitmentGapsneeds Narrowing the gap - opportunities
Patients carers and families need economic and social inclusion
Closed Facebook pages ndash (adults and YAMS) mentors and buddies newsletters teleconferences National conferencesndash commitment to member services is dependant on human resources and funding
Patients need information and education about their disease and treatment options They are also interested in global issues and access to clinical trials nationally and internationally
Provide resources to assist with PIDs treatments researchIDFA posts all clinical trials white papers journals etc on website sign up for international information
Patients need a Support officer who is available for chats teleconferences and suggestions for practical coping skills
Due to IDFA growth there is more pressure on our PT Support Officer ldquoTalksrdquo and teleconferences are getting further behind as more staff needed - Without funding there is no member services
Patients need current PID information IDFA is associated with ASCIA and attends annual conference President of ASCIA is IDFA Board MAC Chair IDFA has a close relationship with Aust PID Clinicians and nurses
Patients are interested in global research and events
IDFA is associated with IDF (US) IDFNZ amp IPOPI Executive Officer is Treasurer of IPOPI
5 Patient outcomesGapsneeds Narrowing the gap - opportunities
Patients have high levels of stress which puts relationships at risk
Resource kits discussed with new patients can ease the stress of newly diagnosed patients and their families
Patients need to accept their diseaseEmpowering patients leads to positive emotions = improved quality of life
IDFA staff and mentors assist new patients as soon as they join The IDFA closed Facebook group are very kind and empathetic towards new members they feel they are not alone
Education and resources The provision of an IDFA member resource pack provides education and resources for new members
Access to clinical trials Clinical trials are posted in the website and on Facebook
Genetic sequencing assists future decisions Genetic testing is sought through the Immunologist
Patients want to understand their condition and identify with others
Joining the patient organisation makes them part of a community they identify with Patient organisations are only able to assist if they have adequate human andfinancial resources
6 CommunityGapsneeds Narrowing the gap - opportunities
Patients need to feel supported Joining the patient organisation makes them part of a community they identify with Patient organisations are only able to assist with human andfinancial resources No funding = no services
Patients need to feel part of a PID community where they do not feel so isolated and alone
Foster and engage a PID community where members do not feel so isolated and aloneIDFA member mantra is promoted I Donrsquot Feel Alone
Patient organisations foster a sense of community They provide advocacy and organisational commitment which plays a crucial role in patient care economic and social inclusion compliance and quality of life
If patient organisations received annual government funding this could relieve some of the burden of care placed on the health system by patientsIn Sweden at tax time 1 of taxable income (church tax) must be donated to a church or charity of their choice
PID patients need improved quality of life
Lines of communication between the evidence based model of care and the patient centred model of care are necessary for advocacy and to improve patient quality of life Currently ASCIA and IDFA commit to national advocacy campaigns where ASCIA provides evidence based support and IDFA provides patient based support
Recommendation A community focussed model of care where the patient is supported by the evidence based and the patient centred model of care and includes communication between the evidence based model of care and the patient centred model of care to improve quality of life
Specialist medical team(s)
Disease focussed specialist
Hospital treatments
Co-morbidity specialists Patient
support group
Patient needs
Global communication
Patient advocacy Patient
individual commitment
Organisational commitment
Patient outcomes
PID community
PatientMedical team(s)
Hospital medical
identification
Support Emotional financial
community
Patient support group
Transition process
Streamlined access to
Govt assistance
Access to optimal
treatmentCorrect
diagnosis
ASCIA Evidence based model of care
IDFA Patient centred model of care
Community focussed model of careimproves patients quality of life
ContactExecutive Officer Christine Jeffery
Mobile 0409 945 114
Email christinejefferyidfaorgau
A PO Box 969 Penrith NSW 2751
P 1800 100 198
W wwwidfaorgau
ACN 117 585 976
ABN 99 117 585 976
To become a member complete the membership form online httpwwwidfaorgauidfa-membership-patients-families-healthcare-professionals
3 Patient individual commitmentGapsneeds Narrowing the gap - opportunities
Patients need to commit to their treatment regime This is a life long process As patients are hospitalised regularly many want home based treatment options to reduce hospital admissions
More hospitals to implement SCIg More Ig nursing practioners to train patients for home treatments The implementation of SCIg is too slow Currently for patients on SCIg the patient needs to pick up monthly treatment so no saving is made in regard to travel costs for members Treatments should be accessible from the patientrsquos local hospital and a 3 monthly supply provided
Patients need economic and social inclusion Join patient organisation which provides resources education mentors buddies social support and conferences
4 Organisational commitmentGapsneeds Narrowing the gap - opportunities
Patients carers and families need economic and social inclusion
Closed Facebook pages ndash (adults and YAMS) mentors and buddies newsletters teleconferences National conferencesndash commitment to member services is dependant on human resources and funding
Patients need information and education about their disease and treatment options They are also interested in global issues and access to clinical trials nationally and internationally
Provide resources to assist with PIDs treatments researchIDFA posts all clinical trials white papers journals etc on website sign up for international information
Patients need a Support officer who is available for chats teleconferences and suggestions for practical coping skills
Due to IDFA growth there is more pressure on our PT Support Officer ldquoTalksrdquo and teleconferences are getting further behind as more staff needed - Without funding there is no member services
Patients need current PID information IDFA is associated with ASCIA and attends annual conference President of ASCIA is IDFA Board MAC Chair IDFA has a close relationship with Aust PID Clinicians and nurses
Patients are interested in global research and events
IDFA is associated with IDF (US) IDFNZ amp IPOPI Executive Officer is Treasurer of IPOPI
5 Patient outcomesGapsneeds Narrowing the gap - opportunities
Patients have high levels of stress which puts relationships at risk
Resource kits discussed with new patients can ease the stress of newly diagnosed patients and their families
Patients need to accept their diseaseEmpowering patients leads to positive emotions = improved quality of life
IDFA staff and mentors assist new patients as soon as they join The IDFA closed Facebook group are very kind and empathetic towards new members they feel they are not alone
Education and resources The provision of an IDFA member resource pack provides education and resources for new members
Access to clinical trials Clinical trials are posted in the website and on Facebook
Genetic sequencing assists future decisions Genetic testing is sought through the Immunologist
Patients want to understand their condition and identify with others
Joining the patient organisation makes them part of a community they identify with Patient organisations are only able to assist if they have adequate human andfinancial resources
6 CommunityGapsneeds Narrowing the gap - opportunities
Patients need to feel supported Joining the patient organisation makes them part of a community they identify with Patient organisations are only able to assist with human andfinancial resources No funding = no services
Patients need to feel part of a PID community where they do not feel so isolated and alone
Foster and engage a PID community where members do not feel so isolated and aloneIDFA member mantra is promoted I Donrsquot Feel Alone
Patient organisations foster a sense of community They provide advocacy and organisational commitment which plays a crucial role in patient care economic and social inclusion compliance and quality of life
If patient organisations received annual government funding this could relieve some of the burden of care placed on the health system by patientsIn Sweden at tax time 1 of taxable income (church tax) must be donated to a church or charity of their choice
PID patients need improved quality of life
Lines of communication between the evidence based model of care and the patient centred model of care are necessary for advocacy and to improve patient quality of life Currently ASCIA and IDFA commit to national advocacy campaigns where ASCIA provides evidence based support and IDFA provides patient based support
Recommendation A community focussed model of care where the patient is supported by the evidence based and the patient centred model of care and includes communication between the evidence based model of care and the patient centred model of care to improve quality of life
Specialist medical team(s)
Disease focussed specialist
Hospital treatments
Co-morbidity specialists Patient
support group
Patient needs
Global communication
Patient advocacy Patient
individual commitment
Organisational commitment
Patient outcomes
PID community
PatientMedical team(s)
Hospital medical
identification
Support Emotional financial
community
Patient support group
Transition process
Streamlined access to
Govt assistance
Access to optimal
treatmentCorrect
diagnosis
ASCIA Evidence based model of care
IDFA Patient centred model of care
Community focussed model of careimproves patients quality of life
ContactExecutive Officer Christine Jeffery
Mobile 0409 945 114
Email christinejefferyidfaorgau
A PO Box 969 Penrith NSW 2751
P 1800 100 198
W wwwidfaorgau
ACN 117 585 976
ABN 99 117 585 976
To become a member complete the membership form online httpwwwidfaorgauidfa-membership-patients-families-healthcare-professionals
4 Organisational commitmentGapsneeds Narrowing the gap - opportunities
Patients carers and families need economic and social inclusion
Closed Facebook pages ndash (adults and YAMS) mentors and buddies newsletters teleconferences National conferencesndash commitment to member services is dependant on human resources and funding
Patients need information and education about their disease and treatment options They are also interested in global issues and access to clinical trials nationally and internationally
Provide resources to assist with PIDs treatments researchIDFA posts all clinical trials white papers journals etc on website sign up for international information
Patients need a Support officer who is available for chats teleconferences and suggestions for practical coping skills
Due to IDFA growth there is more pressure on our PT Support Officer ldquoTalksrdquo and teleconferences are getting further behind as more staff needed - Without funding there is no member services
Patients need current PID information IDFA is associated with ASCIA and attends annual conference President of ASCIA is IDFA Board MAC Chair IDFA has a close relationship with Aust PID Clinicians and nurses
Patients are interested in global research and events
IDFA is associated with IDF (US) IDFNZ amp IPOPI Executive Officer is Treasurer of IPOPI
5 Patient outcomesGapsneeds Narrowing the gap - opportunities
Patients have high levels of stress which puts relationships at risk
Resource kits discussed with new patients can ease the stress of newly diagnosed patients and their families
Patients need to accept their diseaseEmpowering patients leads to positive emotions = improved quality of life
IDFA staff and mentors assist new patients as soon as they join The IDFA closed Facebook group are very kind and empathetic towards new members they feel they are not alone
Education and resources The provision of an IDFA member resource pack provides education and resources for new members
Access to clinical trials Clinical trials are posted in the website and on Facebook
Genetic sequencing assists future decisions Genetic testing is sought through the Immunologist
Patients want to understand their condition and identify with others
Joining the patient organisation makes them part of a community they identify with Patient organisations are only able to assist if they have adequate human andfinancial resources
6 CommunityGapsneeds Narrowing the gap - opportunities
Patients need to feel supported Joining the patient organisation makes them part of a community they identify with Patient organisations are only able to assist with human andfinancial resources No funding = no services
Patients need to feel part of a PID community where they do not feel so isolated and alone
Foster and engage a PID community where members do not feel so isolated and aloneIDFA member mantra is promoted I Donrsquot Feel Alone
Patient organisations foster a sense of community They provide advocacy and organisational commitment which plays a crucial role in patient care economic and social inclusion compliance and quality of life
If patient organisations received annual government funding this could relieve some of the burden of care placed on the health system by patientsIn Sweden at tax time 1 of taxable income (church tax) must be donated to a church or charity of their choice
PID patients need improved quality of life
Lines of communication between the evidence based model of care and the patient centred model of care are necessary for advocacy and to improve patient quality of life Currently ASCIA and IDFA commit to national advocacy campaigns where ASCIA provides evidence based support and IDFA provides patient based support
Recommendation A community focussed model of care where the patient is supported by the evidence based and the patient centred model of care and includes communication between the evidence based model of care and the patient centred model of care to improve quality of life
Specialist medical team(s)
Disease focussed specialist
Hospital treatments
Co-morbidity specialists Patient
support group
Patient needs
Global communication
Patient advocacy Patient
individual commitment
Organisational commitment
Patient outcomes
PID community
PatientMedical team(s)
Hospital medical
identification
Support Emotional financial
community
Patient support group
Transition process
Streamlined access to
Govt assistance
Access to optimal
treatmentCorrect
diagnosis
ASCIA Evidence based model of care
IDFA Patient centred model of care
Community focussed model of careimproves patients quality of life
ContactExecutive Officer Christine Jeffery
Mobile 0409 945 114
Email christinejefferyidfaorgau
A PO Box 969 Penrith NSW 2751
P 1800 100 198
W wwwidfaorgau
ACN 117 585 976
ABN 99 117 585 976
To become a member complete the membership form online httpwwwidfaorgauidfa-membership-patients-families-healthcare-professionals
5 Patient outcomesGapsneeds Narrowing the gap - opportunities
Patients have high levels of stress which puts relationships at risk
Resource kits discussed with new patients can ease the stress of newly diagnosed patients and their families
Patients need to accept their diseaseEmpowering patients leads to positive emotions = improved quality of life
IDFA staff and mentors assist new patients as soon as they join The IDFA closed Facebook group are very kind and empathetic towards new members they feel they are not alone
Education and resources The provision of an IDFA member resource pack provides education and resources for new members
Access to clinical trials Clinical trials are posted in the website and on Facebook
Genetic sequencing assists future decisions Genetic testing is sought through the Immunologist
Patients want to understand their condition and identify with others
Joining the patient organisation makes them part of a community they identify with Patient organisations are only able to assist if they have adequate human andfinancial resources
6 CommunityGapsneeds Narrowing the gap - opportunities
Patients need to feel supported Joining the patient organisation makes them part of a community they identify with Patient organisations are only able to assist with human andfinancial resources No funding = no services
Patients need to feel part of a PID community where they do not feel so isolated and alone
Foster and engage a PID community where members do not feel so isolated and aloneIDFA member mantra is promoted I Donrsquot Feel Alone
Patient organisations foster a sense of community They provide advocacy and organisational commitment which plays a crucial role in patient care economic and social inclusion compliance and quality of life
If patient organisations received annual government funding this could relieve some of the burden of care placed on the health system by patientsIn Sweden at tax time 1 of taxable income (church tax) must be donated to a church or charity of their choice
PID patients need improved quality of life
Lines of communication between the evidence based model of care and the patient centred model of care are necessary for advocacy and to improve patient quality of life Currently ASCIA and IDFA commit to national advocacy campaigns where ASCIA provides evidence based support and IDFA provides patient based support
Recommendation A community focussed model of care where the patient is supported by the evidence based and the patient centred model of care and includes communication between the evidence based model of care and the patient centred model of care to improve quality of life
Specialist medical team(s)
Disease focussed specialist
Hospital treatments
Co-morbidity specialists Patient
support group
Patient needs
Global communication
Patient advocacy Patient
individual commitment
Organisational commitment
Patient outcomes
PID community
PatientMedical team(s)
Hospital medical
identification
Support Emotional financial
community
Patient support group
Transition process
Streamlined access to
Govt assistance
Access to optimal
treatmentCorrect
diagnosis
ASCIA Evidence based model of care
IDFA Patient centred model of care
Community focussed model of careimproves patients quality of life
ContactExecutive Officer Christine Jeffery
Mobile 0409 945 114
Email christinejefferyidfaorgau
A PO Box 969 Penrith NSW 2751
P 1800 100 198
W wwwidfaorgau
ACN 117 585 976
ABN 99 117 585 976
To become a member complete the membership form online httpwwwidfaorgauidfa-membership-patients-families-healthcare-professionals
6 CommunityGapsneeds Narrowing the gap - opportunities
Patients need to feel supported Joining the patient organisation makes them part of a community they identify with Patient organisations are only able to assist with human andfinancial resources No funding = no services
Patients need to feel part of a PID community where they do not feel so isolated and alone
Foster and engage a PID community where members do not feel so isolated and aloneIDFA member mantra is promoted I Donrsquot Feel Alone
Patient organisations foster a sense of community They provide advocacy and organisational commitment which plays a crucial role in patient care economic and social inclusion compliance and quality of life
If patient organisations received annual government funding this could relieve some of the burden of care placed on the health system by patientsIn Sweden at tax time 1 of taxable income (church tax) must be donated to a church or charity of their choice
PID patients need improved quality of life
Lines of communication between the evidence based model of care and the patient centred model of care are necessary for advocacy and to improve patient quality of life Currently ASCIA and IDFA commit to national advocacy campaigns where ASCIA provides evidence based support and IDFA provides patient based support
Recommendation A community focussed model of care where the patient is supported by the evidence based and the patient centred model of care and includes communication between the evidence based model of care and the patient centred model of care to improve quality of life
Specialist medical team(s)
Disease focussed specialist
Hospital treatments
Co-morbidity specialists Patient
support group
Patient needs
Global communication
Patient advocacy Patient
individual commitment
Organisational commitment
Patient outcomes
PID community
PatientMedical team(s)
Hospital medical
identification
Support Emotional financial
community
Patient support group
Transition process
Streamlined access to
Govt assistance
Access to optimal
treatmentCorrect
diagnosis
ASCIA Evidence based model of care
IDFA Patient centred model of care
Community focussed model of careimproves patients quality of life
ContactExecutive Officer Christine Jeffery
Mobile 0409 945 114
Email christinejefferyidfaorgau
A PO Box 969 Penrith NSW 2751
P 1800 100 198
W wwwidfaorgau
ACN 117 585 976
ABN 99 117 585 976
To become a member complete the membership form online httpwwwidfaorgauidfa-membership-patients-families-healthcare-professionals
Recommendation A community focussed model of care where the patient is supported by the evidence based and the patient centred model of care and includes communication between the evidence based model of care and the patient centred model of care to improve quality of life
Specialist medical team(s)
Disease focussed specialist
Hospital treatments
Co-morbidity specialists Patient
support group
Patient needs
Global communication
Patient advocacy Patient
individual commitment
Organisational commitment
Patient outcomes
PID community
PatientMedical team(s)
Hospital medical
identification
Support Emotional financial
community
Patient support group
Transition process
Streamlined access to
Govt assistance
Access to optimal
treatmentCorrect
diagnosis
ASCIA Evidence based model of care
IDFA Patient centred model of care
Community focussed model of careimproves patients quality of life
ContactExecutive Officer Christine Jeffery
Mobile 0409 945 114
Email christinejefferyidfaorgau
A PO Box 969 Penrith NSW 2751
P 1800 100 198
W wwwidfaorgau
ACN 117 585 976
ABN 99 117 585 976
To become a member complete the membership form online httpwwwidfaorgauidfa-membership-patients-families-healthcare-professionals
ContactExecutive Officer Christine Jeffery
Mobile 0409 945 114
Email christinejefferyidfaorgau
A PO Box 969 Penrith NSW 2751
P 1800 100 198
W wwwidfaorgau
ACN 117 585 976
ABN 99 117 585 976
To become a member complete the membership form online httpwwwidfaorgauidfa-membership-patients-families-healthcare-professionals