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SPAH NMCN 2017/18

Scottish Paediatric & Adult Haemoglobinopathy Network

ANNUAL REPORT 2017/18

Lead Clinician: Dr Susan Baird

Programme Manager: Mhairi Gallacher

Programme Support Officer: Laura Craig

Data Analyst: Michael Cairns

SPAH NMCN 2017/18

Contents

Executive summary ................................................................................................................................. 1

Introduction ............................................................................................................................................. 2

Aim/ Purpose of Network ......................................................................................................................... 3

Report against Workplan ......................................................................................................................... 4

Plans for the year ahead ........................................................................................................................ 12

Network governance.............................................................................................................................. 13

Detailed Description of Progress over Reporting Period .......................................................................... 12

Proposed workplan for 2018/19 …………………………………………………………………………………… 20

Appendix 1: Haemaglobinopathies Teaching .......................................................................................... 23

Appendix 2: Network membership.................................................................................................................25

Appendix 3: Finance .............................................................................................................................. 26

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Executive summary

Significant progress has been achieved by SPAH in 2017/18 particularly around the recommendations following the successful review of the Network in 2017. As part of national commissioning policy, SPAH was assessed as to whether it continues to meet stakeholder needs and adds value to healthcare in Scotland. The review process concluded successfully for the Network in June 2017 with National Specialist Services Committee (NSSC) confirming continued designation on behalf of NHS Boards and Scottish Government. A 3-5 year programme of work has been developed to track and prioritise progress against review recommendations as well as other projects/objectives endorsed by the Steering Group.

Measuring performance has been a major objective for the Network during 2017/18. The Audit sub-group has reviewed and approved Key Performance Indicators (KPIs). The Network has also completed a gap analysis of the demographic and condition information on the Clinical Audit System (CAS) which will be repeated quarterly. Success in this area is evidenced in this year’s report; for the first time outcomes are reported against all six KPIs.

Education and information remain a priority for the Network, with the aim to continue to build a range of resources for both professionals and other stakeholders. Current resources are easily accessible through the website and provided at clinics and the Nurse Sub-Group will be re-convened in 2018 to lead on the review of patient information. The Network hosted a successful education event for Haematology Registrars and trainees in March 2018.

Dr Beverley Robertson, who has been Lead Clinician of the Network since 2013, stepped down from her role in June. The Network thanks Dr Robertson for her leadership and commitment over the past 4 years and is pleased to report that she will continue as an active member of the Network. The Network is pleased to welcome Dr Susan Baird to the role of Network Lead Clinician.

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Introduction

The Scottish Paediatric & Adult Haemoglobinopathy Network (SPAH) was designated as a National Managed Clinical Network (NMCN) on 1 April 2011.

The Network was established to ensure appropriate links to the Linked National Antenatal and Newborn Screening Programme for Haemoglobinopathies which was implemented in October 2010. The nationally funded Transcranial Doppler and Ferriscan services for children with Sickle Cell and Thalassaemia are also fully integrated with the Network.

Due to the complex nature of Sickle Cell Disease and Thalassaemia early involvement of the specialist Haematology team is crucial to ensuring good patient outcomes. The Network connects the various points of service delivery in the patient pathway and supports clinicians to work together effectively. Patients are primarily treated in five centres (Aberdeen, Dundee, Edinburgh, Glasgow and Forth Valley), with equity of care supported through the use of standard guidelines and networking amongst the clinicians to share best practice

The term haemoglobinopathy covers a range of inherited blood conditions in which haemoglobin (the oxygen carrying protein in red blood cells) is either qualitatively or quantitatively abnormal. The two main disease groups are Sickle Cell Disease (SCD) and Thalassaemia. These are lifelong genetic disorders which often result in complex medical problems.

Sickle Cell Disease (Hb-SS, HBSC, HBS/Beta thalassaemia and other sickling disorders)

Sickle cell disease is a lifelong inherited blood disorder primarily arising in people of African-Caribbean origin and less frequently in those from India, Pakistan, Southern Europe and the Middle East. It is characterised by a chronic anaemia, an increased susceptibility to infection and a propensity to acute vaso-occlusive crisis which can be painful and can cause widespread organ damage. Acute episodes can be life threatening and require prompt expert attention. Recurrent episodes result in chronic ill health affecting almost every organ. The morbidity associated with this organ damage can be lessened with appropriate clinical assessment and expert management.

Beta Thalassaemia Major Beta thalassaemia predominantly affects people of Asian and Southern Mediterranean origin and results in a lifelong requirement for regular red cell transfusion every few weeks. The major health issues associated with thalassaemia relate to transfusional iron overload and organ damage.

The Network has a remit to ensure that equitable, high quality care is delivered promptly to patients with haemoglobinopathies (Sickle Cell and Thalassaemia) at all points in their journey, by a multidisciplinary health care team with knowledge of the condition. This includes minimising the risk of infections by immunisation and prophylaxis, management of drug therapies, transfusion needs and consequent iron overload to improve long-term health. Patient and parent education is also important to minimise the occurrence of sickle cell acute complications and managing these at home, where possible, thus reducing disruption to education and employment.

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Objective / Purpose of Network

The Network objectives are:

Design and ongoing development of an effective Network structure that is organised, resourced and governed to meet requirements in relation to SGHSCD Guidance on MCNs ( currently CEL (2012) 29 ) (Annex ) and national commissioning performance management and reporting arrangements;

Support the development, design and delivery of services that are evidence based and aligned with current strategic and local and regional NHS planning and service priorities.

Effective Stakeholder Communication and Engagement through design and delivery of a written strategy that ensures stakeholders from Health, Social Care, Education, the Third Sector and Service Users are involved in the Network and explicitly in the design and delivery of service models and improvements.

Improved capability and capacity in haemoglobinopathy care through design and delivery of a written education strategy that reflects and meets stakeholder needs.

Effective systems and processes to facilitate and provide evidence of continuous improvement in the quality of care (CQI).

Generate better value for money in how services are delivered.

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Report against Workplan

Review of Network

The review of the Network which concluded in June 2017 was a significant and resource intensive piece of work. The outcome was positive and recommendations (below) arising from the review have been incorporated into the long term workplan for the Network.

The Network should consider methods to enable patients and families to take an active role in the delivery of service improvements.

Communication should be improved by raising the awareness and profile of the Network; engaging a wider cohort of stakeholders from social care, education, A&E and patients; ensuring that Network members are aware of their responsibilities to feed back to local clinical, planning and management colleagues; and developing the Network website.

The Network Key Performance Indicators should be revised and presented in the standard format with targets identified.

Clinical outcomes should be benchmarked against the rest of the UK by collaboration with the National Haemoglobinopathy Register.

Existing good practice should continue in the development and review of protocols and guidelines and the provision of a programme of education.

Extend service user representation to include adults.

Work towards achieving a complete dataset for the Newborn Screening Programme that fulfils audit requirements. Liaise with the antenatal screening group to support collaboration with public health to undertake a more robust antenatal screening audit.

Work has already commenced to take forward a number of these recommendations during 2017/18 including; updating the SPAH website, reviewing Key Performance Indicators and presenting outcomes, updating protocols and guidelines and new guidelines planned; SpR Education event; and involvement of patients and families in planning events. Plans are in place during 2018/19 to address the other recommendations including the production of a new communications strategy for the network, exploring benchmarking with the rest of the UK and extending adult representation within the network.

Guidelines

During 2017/18 the Network has established a timetable for the review and development of guidelines. The Network currently has 21 guidelines available to staff involved in providing care for patients with haemoglobinopathies in Scotland.

The Paediatric Protocols and Guidelines Sub Group have met twice during the reporting period and have reviewed and updated 6 guidelines which are available on the Network’s website. Progress is underway in developing 3 additional new paediatric guidelines/protocol during 2018/19.

Thalassaemia Endocrine

Transplant

Chronic Transcranial Doppler (TCD) Protocol

The Adult Protocols and Guidelines Sub Group has opted to conduct the progression and development of work through email discussion and then formally meet at the annual Joint

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Protocols and Guidelines Group. In this reporting period a total of 6 guidelines were reviewed and are available from the website. An Iron overload and Chelation Therapy guideline has also been developed by this group and should be endorsed imminently. Through 2018/19, the following guidelines are to be developed:

Acute Anaemia

Leg ulcers

Education

Multidisciplinary Meetings - In this reporting period, two multidisciplinary meetings took

place on 8th September and 24th November in Glasgow with video links to four sites

nationally. In addition to case presentations with learning points, specialist peer

support was provided in individual cases of ongoing treatment of patients.

Network members have been involved in providing additional local haemaglobinopathy

education to various colleagues across Scotland. The list of teaching/events has been

captured in Appendix 1.

Haematology Registrars Education Event - The Network hosted an education day for

Haematology Registrars with 31 delegates in attendance. An evaluation report was

produced from the 26 completed evaluation forms following the event and an example of

the results are summarised below.

23

2

0

5

10

15

20

25

Highly relevant

Mostly of relevance

Fairly relevant

No part relevant

How do rate the relevance of this event to your educational needs?

22

3

0 5

10 15 20 25

How do rate the overall quality of education provided by this

meeting?

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The Network has revised the way it gathers feedback from delegates at education events. Historically, this was limited to event evaluation forms completed on the day and as such, it has been difficult to gauge any sustained impact Network education events have on clinical practice. To address this the Network is now also surveying delegates nine months after attending an event to ask them about changes they have implemented in their practice since the Network event. Survey results from this year’s event will be reported in 2018/19. Results captured from the 2016 education event included:

“Definitely increased my knowledge base, provided a structure for working through basic

cases and troubleshooting with more challenging ones.” “My knowledge base has greatly increased. To build on this meeting I attended Barbara

Bains haemoglobinopathy one-day course, and have read the recently updated

guidelines on the management of adult sickle cell and thalassemia.” “The course was extremely comprehensive and provided excellent revision and

preparation for FRCPath examinations. It provided excellent clinical cases which have improved my understanding of the rarer haemoglobinopathies and enhanced my clinical

knowledge. It has better informed my practice of screening for iron overload.” Communication

Website Development - The website has been restructured and updated and is a valuable source of SPAH for patients and professionals alike. An up to date Service Map has been added. Further development will take place during 2018/19 in conjunction with the NSS Communications Team.

Newsletter - The Network issued its first newsletter in February 2018 which included updates on the conclusion of the Network review, the number of guidelines reviewed and to be developed, the importance of collecting and maintaining data within the Clinical Audit System, reminders of all forthcoming education events and Network meetings. The subsequent newsletter will be available following the Networks Annual Performance Review by National Services Division (NSD) in June.

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Transition Quality Improvement Project The Network has been undertaking a project using QI methodology to improve the transition process. The first stage was to gather retrospective data on patients who have gone through the transition process. A baseline will be established then data collected prospectively on those going through the process following the implementation of the Ready Steady Go Hello programme. A questionnaire to capture this data has been circulated to paediatric and adult colleagues. Given the small number of patients the Network acknowledges that it may take 1-2 years to test and implement improvement ideas. Patient Engagement A questionnaire was conducted in July 2017 to capture views on local service provision with the intention of identifying areas for improvement. This was a three pronged approach to ensure the opinions and views of three groups were captured: parent/carer, patients over 18 years and patients 11-18 years. A total of 12 responses were received from a possible 228. Evidently, this has not provided the Network with conclusive data and alternative approaches will be explored during 2018/19. Reporting Against SPAH Key Performance Indicators The Clinical Audit System (CAS) continues to be the national register for SPAH. There are a total of 219 active follow-up patients currently registered on CAS. The largest group is patients with Sickle Cell Disease, with the distribution across Scotland shown in the table below.

The Network has made significant progress in measuring performance against agreed performance indicators during 2017/18. The Audit sub-group has met twice during this period and reviewed and approved six Key Performance Indicators (KPIs), outcomes for which are reported below. The Network has also completed a gap analysis of the demographic and condition information on the Clinical Audit System (CAS) which will be repeated quarterly.

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The Network is currently meeting its KPI for 100% (N<5) of screen positive babies to be seen within 8 weeks.

Due to the very small numbers of patients involved in this audit, missing data for only 2 patients resulted in 50% outcome. This was due to staff shortages leading to outcome data sheets not being returned within the required timescales.

The Network met its target of 100% of patients with Sickle Cell disease being offered penicillin V (or alternative) antibiotic prophylaxis by three months of age (n<5 in 2017). (Missing information for one patient in 2016 being investigated by network).

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The Network met the standard of 95% of patients with Sickle Cell receiving Pneumovax at two years of age. A grace period of 3 months was allowed for appointment rebooking (N<5 in 2015). The figure improves from 17% in part due to working with treatment centres to ensure improved data completeness.

The Network’s KPI that 95% of all patients with Sickle Cell receive their 5-yearly booster has proved more difficult to collect. The data currently entered on CAS indicates that 45% of patients have received their booster, however there are issues surrounding data collection including that some booster vaccinations are undertaken by GPs. The IT/Audit subgroup considered some of the limitations in collecting this data however agreed to report the information currently available. The sub-group will continue to explore ways of capturing all this information going forward.

100% of children with HbSS and S-Beta Thalassaemia (n=51) were offered a TCD scan within the past 12 months.

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94% of children with HbSS and S-Beta Thalassaemia (n=48) received a TCD scan within the past 12 months. For the small percentage of children who did not receive a scan the service has identified that either the parent/s did not engage with the service or refused the offer.

The IT/Audit sub-group will consider how information on patients who were offered a TCD but refused is fed back to the TCD Service, and similarly for those who previously refused and have now reversed their decision to accept.

KPI6 states that 90% of patients with Thalassaemia on regular transfusion undergo appropriate monitoring of iron overload (annual MRI as per guidelines).

Progress has been made in identifying patients with Thalassaemia >7 years on the clinical audit system who undergo regular transfusions (N=14).

This data looks at information available for 2016/17 (N=11) with 73% of patients receiving the appropriate MRI Scan. The 2 patients without scans were scanned later in 2017/18. (3 additional patients turned 7 years old in this audit year, however they have not been included as had only just recently met the audit criteria and will be included in next year’s audit).

Information materials In early 2017, the information leaflet on vaccinations was produced. Five new information leaflets have been identified for development; Family Planning; Vision/Eye; Thalassaemia Major; Acute Chest Syndrome and Sports. All leaflets were identified either through the Nurses sub-group or feedback from the Patient/Family Event. Once the Nurses sub-group has reconvened they will lead on the development of these leaflets during 2018/19. Service

Adult Ferriscan Service

The Ferriscan Service has been available to all adult patients across Scotland since April, 2015 with the Network playing a key role in facilitating and monitoring access through the National Risk Share Scheme. The Service was available in two locations; Grampian and Forth Valley. Since the service was implemented 36 patients have been referred for scanning.

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Management of Albyn Hospital (Grampian) has recently changed and their contract with Alliance Medical (Provider) has not been renewed. Alliance Medical has also informed the Network that they will not be able to continue to offer the service through Forth Valley Royal Hospital as of 31st March 2018. The Network is working with NSD as commissioners to explore the feasibility of scans being provided locally in the NHS as well as the NHS undertaking Ferriscan reporting.

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Plans for the year ahead Key priorities for year ahead including risks/issues

Organise and host a Patient/Family event.

Deliver a programme of audit against Key Performance Indicators.

Continue to take forward the recommendations from the Network Review.

Continue to develop and review clinical protocols, guidelines and information leaflets, for both professional and patient groups.

Conduct a learning needs analysis to inform the Networks education strategy.

Reconvene the Nursing Sub-Group. Risks/Issues

New Data Protection Regulation - The Network is working with the Information

Management Team to move to the new “opt in” process for CAS. There is concern as to

the impact this may have on the audit programme being developed by the Network. This

will be monitored in collaboration with the IMS.

Adult Ferriscan Service - Due to the changes in the Adult Ferriscan Service the

Network are working to ensure that all patients continue to receive this service and do

not miss out on necessary scans. The Network is exploring the feasibility of scans

being provided locally in the NHS as well as the NHS undertaking Ferriscan reporting.

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Network governance The Network is overseen by a multi-disciplinary steering group which meets three times per year and is accountable for the delivery of the Network workplan.

Through the management structure and terms of reference for the Network Steering Group and sub-groups, SPAH meets the core principles of managed clinical Networks as set out in CEL (2012) 29. Workplans and reports are published on the Network website, and any documents produced by the Network are publically available for clinicians and patients to view.

The Lead Clinician of the Network since 2013, Dr Beverley Robertson, stepped down from her role in June.

Dr Susan Baird has stepped into the role as Lead Clinician for the Network.

The Network was supported through the National Network Management Service (NNMS) in NHS NSS with access to a Programme Manager, Mhairi Gallacher, a Programme Support Officer, Laura Craig and Data Analyst, Michael Cairns.

The Network has a service level agreement with NHS NSS in place for 2017-2020.

Steering Group meetings are chaired by the Lead Clinician and members have a responsibility to communicate effectively between the MCN, relevant professions and their organisation. The Network Steering Group has met on 2 occasions during the course of the year. The list of SPAH Steering Group members is included in Appendix 2.

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Workplan – Scottish Paediatric & Adult Haemoblobinopathy

Please develop and update the table below to include the Network’s designation objectives and related agreed annual objectives. When planning for the year ahead, please consider the standard statements in the guidance section to inform the development of annual Network objectives.

RAG status key

RAG status Description

RED (R) The Network is unlikely to achieve the objective/standard within the agreed timescale

AMBER (A) There is a risk that the Network will not achieve the objective/standard within the agreed timescale, however progress has been made

GREEN (G) The Network is on track to achieve the objective/standard within the agreed timescale

BLUE (B) The Network has been successful in achieving the Network objective/standard to plan

The Institute of Medicine’s six dimensions of quality are central to NHS Scotland’s approach to systems-based healthcare quality improvement, therefore objectives should be linked to these dimensions:

1. Person-centred: providing care that is responsive to individual personal preferences, needs and values and assuring that patient values guide

all clinical decisions;

2. Safe: avoiding injuries to patients from healthcare that is intended to help them;

3. Effective: providing services based on scientific knowledge;

4. Efficient: avoiding waste, including waste of equipment, supplies, ideas, and energy;

5. Equitable: providing care that does not vary in quality because of personal characteristics such as gender, ethnicity, geographic location or

socio-economic status; and

6. Timely: reducing waits and sometimes harmful delays for both those who receive care and those who give care.

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Workplan 2017/2018

Objective Number

SMART Objective Linked Dimensions of Quality

Planned start/ end dates

Detailed Plan Available / Owner

Description of progress towards meeting objective

Anticipated Outcome

RAGB status

2015 - 02 Develop additional information leaflets on:

Acute Chest syndrome

Vision/Eyes

Family Planning

Vaccinations

Thalassaemia Major for Parents/Carers

1, 3 June 2015 - December 2016

Nurses Group Leaflet on Vaccinations is complete and available on the website. Agreed following development of 3-5 year workplan the following leaflets would be added as an objective for 2018/19 workplan.

Family Planning

Vision/Eyes

Thalassaemia Major

Acute Chest Syndrome

Sports Network has produced timetable for updating leaflets and will reconvene the Nursing Sub-Group in 2018/19 to review and develop leaflets.

Patients and their families have access to good quality, up to date information to support them living with their condition.

A

2016-01

The Network will review the recommendations from the final report of the West Midlands Quality Review and agree a plan for rolling out the identified improvements/ recommendations to the 5

1,2,3 March 2017 No Steering Group/ Network sub groups

Recommendations have been reviewed. Two areas have been identified. 1. Transition (QI) project

(see objective 2016-07) 2. Expanding nursing/

nurse specialist

Improved patient care B

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Objective Number





Anticipated Outcome

RAGB status

main centres for equity of patient care.

involvement. Health boards with new nurses are: Greater Glasgow & Clyde, Lothian and Tayside. The Nursing Sub-Group will be reconvened in 2018/19.

2016-04 Review the Networks infrastructure to ensure it is functioning effectively to deliver the workplan for 2016/2017 through the development of: a) communication strategy b) education strategy

1, 2,3,5 December 2016

No Laura Craig/ Dr Robertson

The document templates and processes to develop these strategies are being discussed at sessions organised by the NNMS West Team. a) Network Stakeholder

matrix for discussion at SPAH Steering Group in June 2018.

b) A Learning Needs Analysis has been developed to inform the education strategy which will be developed during 2018/19.

The Network is organised and structured to effectively deliver its programme of work

A

2016-05

Measure performance against three agreed Key Performance Indicators. This will be delivered by ongoing data entry into Clinical Audit System (CAS).

% of children receiving

pneumovax by 2years of

1,2,3,4,6 March 2017 Dec 2017

Yes IT/Audit group

The Audit sub-group met twice and reviewed and approved Key Performance Indicators (KPIs).

The Network completed a gap analysis of the demographic and

Any areas for improvement identified and progressed from audit results

B

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Objective Number





Anticipated Outcome

RAGB status

age (24-27months) and

5 yearly thereafter.

% of patients on regular

transfusion undergoing

appropriate monitoring

of iron overload (regular

ferritins, MRI as per

guidelines)

% of adults with Sickle

Cell disease offered

pneumovax, HIB and

Meningovax

vaccinations

condition information on the Clinical Audit System (CAS) which will be repeated quarterly.

Performance reported against six KPIs within Annual Report. This will be used to identify areas for improvement during 2018/19.

2016-06

Increase awareness of haemoglobinopathies with professionals not routinely involved in patient management through: a) Roll out a teaching session for A&E departments in the 5 main specialist centres

1,2 March 2018 Steering Group Network members

investigating locally

with their A&E

departments to

identify if there is

current teaching

sessions where we

could provide

education.

Ongoing discussion

with Royal College of

Emergency Medicine.

Increased awareness and knowledge of conditions in professionals not routinely involved in management

G

2016-07

The Network will undertake two small tests of change in 2016/2017 using the model for improvement. This will

1,2,3,5 Nov 2017

No Laura Craig/ Dr Robertson

a) a) A questionnaire was developed to establish the reasons why adult patients Do Not Attend (DNA) clinics. Grampian

Service improvements progressed

A

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Objective Number





Anticipated Outcome

RAGB status

inform a more formal development of a Network Quality Improvement plan.

a) Patients not

attending clinic

appointments.

b) Transition using

Ready Steady Go.

March 2018 undertook pilot however it was found that there was no significant issue with patient not attending for clinic. Agreed by Steering Group not to continue as QI project.

b) b) The Network has been using QI methodology to gather retrospective data on patients who have gone through the transition process. A baseline will be established then data collected prospectively on those going through the process following the implementation of the Ready Steady Go Hello. A questionnaire to capture this data has been circulated to paediatric and adult colleagues.

2017-01 Deliver an education programme to:

a) Midwives b) Haematology

Registrars

1,2,3,4 March 2018 Steering Group a) Midwives – Agreed

that this would be

taken forward as a

joint education event

with other Networks.

b) Haematology

Registrars – event

hosted on 9/3/18.

Increased healthcare professional knowledge to either confirm existing good practice or leading to improvements in clinical practice

B

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Objective Number





Anticipated Outcome

RAGB status

2017-02 Host a Patient/Family event

1,3,4,5, Sep 2017 Laura Craig/Steering Group

During the work to plan and develop the long term workplan it was agreed by the Steering Group to move to organising a family event every two years. Objective deferred until 2018/19 workplan.

Increased engagement with patients and carers and better understanding of their priorities to address in future B

2017-03 Develop a programme of audit against KPIs and also review indicators

1,2,3,4,5,6 March 2018 IT/Audit Group SPAHs Key Performance Indicators (KPIs) reviewed and approved. Programme of audit developed. KPIs reported in Annual Report.

B

2017-04 Deliver on the recommendations from the Network review

1,2,3,4,5,6 March 2018 All sub groups and Steering Group

Recommendations included in the long term workplan as part of the Service Agreement. Work ongoing.

G

2017-05 Engagement with patients / carers to identify current views on local services to identify areas for improvement

1,3 July 2017 Laura Craig Questionnaires sent to all patients registered on the Clinical Audit System to capture user views. Results collated however the return response was low and did not conclusively highlight areas for improvement. Alternative routes for gathering views will be explored.

G

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Proposed Workplan 2018/2019

Objective Number





Anticipated Outcome RAGB status

2018-01 Update 13 guidelines in line with timetable for review.

1,2,3,4,5,6 31 March 2019

Y Protocols and Guidelines Sub-Group

A suite of evidence based guidelines will ensure high quality haemoglobinopathy care throughout Scotland.

2018-02 Develop 5 new guidelines as agreed by the SPAH Protocols and Guidelines Sub-Group following recommendations from the West Midlands Quality Review Report.

1,2,3,4,5,6 31 March 2019

Y Protocols and Guidelines Sub-Group

A suite of evidence based guidelines will ensure high quality haemoglobinopathy care throughout Scotland.

2018-03 Reconvene nursing sub-group to lead on review and development of patient leaflets. New leaflets for development:

Family Planning Vision/Eye Checks

Thalassaemia Major Acute Chest Syndrome

Sports

Facilitate a session at the family day to identify other information which would be helpful for patients/carers.

1 31 March 2019

Y Nursing Sub-Group

Patients and their families/carers have access to good quality, up to date information to support them in living with their condition.

2018-04 Conduct a learning needs analysis to inform development of Network’s education strategy.

1, 2, 3, 4 31 March 2019

Y

Steering Group

Professional in Scotland will be up-skilled in their knowledge of haemoglobinopathies.

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Objective Number






2018-05 Develop a strategy in partnership with patients that sets out a variety of engagement methods and how priorities identified will be integrated into Network plan.

Extend service user representation to include adults.

1, 5 31 March 2019

N Steering Group Network Office

The Network objective priorities will be driven by patients and family members. The Network will have met key objectives to increase patient and family involvement. Patient and family member will input to and influence the priorities of the Network.

2018-06 Organise and host a family event in Autumn 2018 working with parents/ carers to develop the programme.

1, 3, 4, 5 September 2018

Y Steering Group Network Office

The Network objective priorities will be driven by patients and family members. The Network will have met key objectives to increase patient and family involvement. Patient and family member will input to and influence the priorities of the Network.

2018-07 Deliver a programme of audit against Key Performance Indicators.

1,2,3,4,5,6 31 March 2018

Y Audit Sub-Group

Continuing programme of audit will ensure high quality haemoglobinopathy care throughout Scotland.

2018-08 Continue collation of data in relation to transition including feedback on the implementation of Ready Steady Go Hello programme to capture

1, 3, 4, 5, 6 Ongoing Y Core Team Members

Service improvements progressed.

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Objective Number






improvement.

2018-09 Work towards achieving a complete dataset for the Newborn Screening Programme that fulfils audit requirements.

In conjunction with the antenatal screening group collaborate with Public Health to support a more robust screening programme.

1, 2, 3, 4, 5, 6 31 March 2018

Y

Audit Sub-Group/ Lead Clinician

Continuing programme of audit will ensure high quality haemoglobinopathy care throughout Scotland

2018-10 Explore benchmarking opportunities against the rest of the UK through collaboration with National Haemoglobinopathy Register.

1, 2, 3, 4, 5, 6 31 March 2018

Y

Audit Sub-Group

Continuing programme of audit will ensure high quality haemoglobinopathy care throughout Scotland

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Appendix 1 – Haemoglobinopathies Teaching

Undergraduate teaching

Annual haemoglobinopathy lecture to 3rd year medical students at Glasgow University Fortnightly case based tutorial on haemoglobinopathies for 5th year medical students (Edinburgh) On-line short video on pathophysiology of sickle cell disease to support flipped classroom learning

(Edinburgh) Lecture to Strathclyde biomedical scientist trainees. Annual lecture to 3rd year medical students on inherited red cell disorders including Sickle Cell and

Thalassaemia. Followed by case-based discussion where a case of Sickle Cell crisis and interpretation of results in Thalassaemia (Aberdeen)

Annual small group tutorial for 2nd year medical students around paediatric anaemias including and a case study on a child with thalassaemia (Dundee)

Haematology professionals and trainees

Session to Paediatric Haematology ward nursing staff on Sickle Cell Disease (RHC Glasgow) FRCPath revision on haemoglobinopathy diagnosis to Haematology registrars (Aberdeen). Teaching session on transfusion in Sickle Cell Disease for Haematology Registrar teaching

(Edinburgh) Education session for haematology nurses and community child health nurses on sickle cell and

thalassemia (Edinburgh) SPAH education day

Other specialities and allied health professionals

Session to Emergency Department medical staff on Sickle Cell Disease (RHC Glasgow) Session to ENT postgraduate training day on ENT considerations in sickle cell disease and surgical

issues (Edinburgh) Every 5 weeks case based tutorials with 4th year medical students including haemoglobinopathy

cases (Aberdeen) Once every 3 years a local grand round slot about haemoglobinopathies is provided to paediatric

trainees and consultants (Dundee). A VIVA and revision session for trainees preparing for FRCPath part 2 exams (Edinburgh). An annual haemoglobinopathy induction session for haematology ST3 doctors (Edinburgh). Registrars deliver 4-6 monthly education sessions, which include management and assessment of

Sickle Cell patients to junior doctors caring for haematology patients (Edinburgh). Annual session on haemoglobinopathies for the Child Health postgraduate certificate (Glasgow). Session to Intensive Therapy Unit trainees on Sickle Cell and the implications for ITU/theatre

(Glasgow GRI)

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Session on HBO patient with particular emphasis on Sickle Cell Disease to Emergency Department medical staff at Royal Hospital for Children (RHC), Glasgow.

Session to Paediatric Haematology ward nursing staff on Sickle Cell Disease (RHC)

Annual session on haemoglobinopathies for the Child Health post graduate certificate (RHC)

Pre-exam talk on haemoglobinopathy diagnosis to Haematology registrars in Aberdeen.

Session to Intensive Therapy Unit trainees on Sickle Cell and the implications for ITU/theatre (GRI)

An annual lecture to all 3rd year medical students at Glasgow University.

A lecture to Strathclyde biomedical scientist trainees.

Annual lecture to 3rd year medical students in Aberdeen on inherited red cell disorders including Sickle Cell and Thalassaemia. Followed by an "Anaemia in practice" session where a case of Sickle Cell crisis and interpretation of results in Thalassaemia is discussed.

Every 5 weeks case based tutorials with 4th year medical students including haemoglobinopathy cases (Aberdeen)

Annually in Dundee, a small group tutorial for 2nd year medical students around paediatric anaemias and a case study on a child with thalassaemia.

Once every 3 years a local grand round slot about haemoglobinopathies is provided to paediatric trainees and consultants in Dundee.

A talk on transfusion in Sickle Cell Disease for Haematology Registrar teaching in Edinburgh.

A VIVA and revision session for trainees preparing for FRCPath part 2 exams (Edinburgh)

An annual haemoglobinopathy induction session for haematology ST3 doctors (Edinburgh)

Registrars deliver 4-6 monthly education sessions, which include management and assessment of Sickle Cell patients to junior doctors caring for haematology patients (Edinburgh)

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Appendix 2: Steering Group membership

Dr Beverley Robertson Consultant Haematologist NHS Grampian

Louise Forrest Clinical Nurse Specialist NHS Grampian

Dr Susan Baird Consultant Paediatric Haematologist

NHS Lothian

Dr Nicole Priddee Consultant Haematologist NHS Lothian

Dr Louisa McIlwaine Consultant Haematologist NHS GG&C

Dr Elizabeth Chalmers Consultant Paediatric

Haematologist

NHS GG&C

Ruth Bissell Haematology Nurse Specialist NHS GG&C

Dr Vicki Brace Consultant Obstetrician NHS GG&C

Dr Ruth Allen Consultant Paediatric Radiologist NHS GG&C

Parent representative Lothian

Parent representative Glasgow

Angela Iley Genetic Counsellor NHS GG&C

Hazel Douglas Specialist Midwife NHS Lothian

Lyn Hutchison Senior Programme Manager NHS NSS

Tara Tchehrazi Quality Manager/Senior Healthcare

Scientist

NHS GG&C

Margaretha van Mourik Consultant Genetic Counsellor NHS GG&C

Buddhi Gunaratne Consultant Paediatrician NHS Tayside

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Appendix 3: Finance

scottish paediatric & adult haemoglobinopathy …...website. progress is underway in developing...

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