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Scottish Differences of Sex Development [SDSD]
National Managed Clinical Network
ANNUAL REPORT 2017/18
Lead Clinician: Dr Miriam Deeny
Programme Manager: Martina Mungall (since November 2017)
Previously: Katie Clayton
Programme Support Officer: Philli Cottam
2
Contents
Executive summary ...................................................................................................................................... 3
Introduction ................................................................................................................................................... 4
1. Network Aim .......................................................................................................................................... 4
2. Report against Work plan April 2017 – March 2018 ............................................................................... 4
3. Plans for the year ahead ......................................................................................................................... 8
3.1 Education ............................................................................................................................................ 8
3.2 Stakeholder Engagement .................................................................................................................... 9
3.3 Patient and Parent Involvement ........................................................................................................... 9
3.4 Continuous Quality Improvement ........................................................................................................ 9
3.5 Recruitment of new Lead Clinician ...................................................................................................... 9
4. Network governance ............................................................................................................................ 10
Detailed Description of Progress over Reporting Period ............................................................................. 11
Workplan SDSD 2017/2018 .................................................................................................................... 11
Workplan SDSD 2018/2019 .................................................................................................................... 20
Appendix 1: Network membership .............................................................................................................. 26
Appendix 2: Finance ................................................................................................................................... 26
Appendix 3: March Symposium Feedback .................................................................................................. 27
Appendix 4: References .............................................................................................................................. 28
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Executive summary
The Scottish Differences of Sex Development National Managed Clinical Network (NMCN) was approved to continue as a NMCN for a further three years following a National Specialist Services Committee (NSSC) review in 2016.
With a re-energised work plan SDSD has led and delivered a number of improvements in quality and access to care. This includes the design and publication of a Neonatal pathway for the referral of newborns diagnosed with a DSD. Looking forward, an adolescent referral pathway for females is under development to be completed by May 2018.
With a focus on quality improvement, SDSD has developed a robust data collection plan to take the network forward. This utilises the ongoing Scottish Audit of Atypical Genitalia (SAAG), newly developed clinic questionnaire and an international DSD registry administered by the Office for Rare Conditions [ORC] in Glasgow. The network also supported participation in a survey to inform the standardisation of DSD guidelines by the British Society of Paediatric Endocrinology and Diabetes (BSPED). This is now published on our website under https://www.bsped.org.uk/media/1371/dsd-standards-november_2017.pdf
Improved patient engagement has been achieved through development of a communication and engagement strategy, facilitation of a patient and family event, completion of a series of patient interviews and creation of a new look website. In response to feedback from service users the network name was also changed from ‘Disorders’ to ‘Differences’ of sex development.
The network has written a Quality Strategy focusing on improving communication and awareness of the network through the website and newsletters. The network identified the website required more up to date links to other organisations and the patient information leaflets required a refresh. The network has continued to update leaflets and reviewed requirement for additional information leaflets. We have recently produced an information leaflet on Adolescent Hypospadias.
The network has continued to promote the education of multidisciplinary clinicians with an annual symposium featuring a wide range of topical presentations.
Through its achievements in 2017/18 and work planned for the coming year SDSD is well placed to achieve its long term objectives and improve levels of care for those living in Scotland with a DSD.
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Introduction
SDSD (formerly the Scottish Genital Anomalies Network, (SGAN)), was established in 2005 to improve support for any individual born with a difference of sex development (DSD) in Scotland. Sex is usually assigned immediately after birth. Whilst atypical genitalia are not uncommon and population studies using linked hospital datasets suggest that atypical genitalia may occur in 1 in 300 births (1), delayed sex assignment is felt to be rarer. Currently, there are no published reports that describe the extent of delay in sex assignment. Ambiguous genitalia where sex assignment on expert examination is difficult is reported to occur in about 1 in 5,000 births [2].
In a study to be published later in 2018 by Rodie ME1 et al [See Reference 2 ] highlighted the birth prevalence of atypical genitalia requiring specialist input by a member of a managed clinical network in term of newborns, in Scotland was calculated as 1 in 3,414. This prospective survey had not included preterm infants as assessment of their genitalia is often complicated by the effects of prematurity. However, on including preterm infants, the birth prevalence increased to 1 in 2,289. This electronic survey of clinical members of managed clinical networks in Scotland occurred between 2013 and 2016. The study highlighted the importance of multidisciplinary team working and collaboration across national networks which the network was very pleased to hear. The study was carried out on behalf of the network and the Scottish Paediatric Endocrine group.
Network membership is made up of a multidisciplinary group of healthcare professionals who provide care to children and adults who are born with an anomaly of the genitalia. The SDSD Network is focused on providing equitable care to all those living in Scotland, born with a DSD.
1. Network Aim
The SDSD Network has a remit to support achievement of equity of care across Scotland. The key Network aim is
To achieve the best possible outcomes for individuals born with a difference of sex
development through better access to high quality specialist care by enabling Scottish
Government Health and Social Care Directorates [SGHSCD] policy aims of safe, effective,
person centred care delivered as close as to home as possible.
2. Report against Work plan April 2017 – March 2018
2017-01 Involvement of key stakeholders to obtain feedback on service provision for DSD and promote SDSD network
The identification of link clinicians in each NHS Board area has been completed which will ensure maximum awareness of the network nationally . Stakeholders now include specialists at the heart of the service, including endocrine, psychology and neonatal staff who will potentially identify cases and manage ongoing care and support patients and families. Specialists from multiple related disciplines have been invited to participate in network education events and SDSD clinicians have been invited to speak at events held by related networks including the Scottish Paediatric Endocrine Network [SPEG]. SDSD clinicians have also attended various educational events in Scotland and Europe during which they have highlighted the network and its activities. Dr Deeny and Dr Sastry presented at the European Paediatric and Adolescent Gynaecology Society in Lithuania in June 2017 .This provided the network with the opportunity to raise awareness and share good practice. The network has recruited an adult patient representative to the steering group who has provided valuable feedback to network activities including review of a leaflet for Mayer-Rokitansky-Küster-Hauser (MRKH) patients and advice on key messages. This leaflet is now accessible on our website. MRKH is a condition that is present from birth .It describes the absence of the uterus (womb), cervix and upper part of the vagina. The network held a patient and
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families event for girls with DSD in Glasgow in May 2017 which was well attended and provided valuable feedback to the network on the needs of patients within this group. As a result of discussions at this event the network collaborated with the Scottish Cervical Screening and agreed that this patient group will no longer receive reminders for cervical screening when it is unnecessary. The network sees the value in further engagement with service users of the network and is looking to work more closely with families of children and young people with DSD.
The network is also developing educational presentations which can be viewed online and will centre on the neonatal pathway and educate front line clinicians on how to manage newborns presenting with DSD. The network exhibited at the Scottish Maternity and Midwifery Festival in Edinburgh in November 2017 with a focus on highlighting the neonatal referral pathway.
2017-02 MDT clinics - provide care that is responsive to the needs of the patients and families and based on best practice.
Multidisciplinary clinics continue to take place at three sites in Scotland: Aberdeen, Edinburgh and Glasgow. The Edinburgh based clinic runs in the format of a multi-disciplinary discussion prior to meeting the patient. These clinics were developed so they could be multidisciplinary to reduce the need for the patient to have multiple clinic appointments with different specialities. The clinic dates are posted on the website. The network is investigating the possibility of using questionnaires to capture patients experiences of the multidisciplinary clinics. The network has developed questionnaires for parents and for young people over the age of 12.These will ensure the patient has an opportunity to input their view and allow feedback to the network.
2017-03 Improve access to education and training for Clinicians and increase clinicians competence in managing DSD Patients. The network has continued to promote the education of multidiscipliniary clinicians with an annual symposium featuring a wide range of topical presentations.
The 2018 13th Annual Symposium was held at COSLA Edinburgh, bringing a range of DSD clinicians together to share learning and case studies. The event was well received with attendees including Psychologists, Gynaecologists, Urologists, Specialist Nurse, Surgeons and Paediatricians. See SDSD March Symposium Evaluation Results Figure 1 below:
Figure 1
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Figure 2 below indicates the level of satisfaction from the 2018 Annual Symposium which is very positive. A further table Figure 3 (see below) highlights how the participants heard about the Annual Symposium which is interesting in terms of informing how the network promotes events. From this we are pleased that as a network we have a Quality Strategy focusing on improving communication and improving interaction with the SDSD website. The network hopes that the website will become a more important source of access to information, including future education events.
Figure 2
Networks are increasingly revising evaluation tools to ascertain the impact of education they provide in terms of changing clinical practice rather than simply looking at levels of satisfaction. The network will explore this for future events.
Figure 3
0 10 20 30 40 50 60 70 80 90
How satisfied: Booking
process & pre-event
organisation
How satisfied:
Organisation of the day
How satisfied: Range of
speakers & topics
How satisfied:
Relevance of topics to your
clinical practice
How satisfied: with presentations
that were delivered
How satisfied: with the chance to participate in
discussion sessions
Sati
sfac
tio
n R
atin
g (%
)
2018 SDSD Symposium - Evaluation Results
Very Satisfied
Very Dissatisfied
Quite Satisfied
Satisfied
Not Satisfied
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Work is ongoing to develop online learning tools and information resources for front line neonatal clinicians encountering suspected SDSD cases. SDSD supported delivery of an education event focusing on a wide range of rare conditions in neonates in September 2017.
In September 2017 an ‘Early Management of Rare Conditions in the Neonate’ event, hosted by the Office for Rare Conditions [ORC], was held in Glasgow where our Lead Clinician Dr Deeny attended on behalf of the network. The ORC is based at the Glasgow Children’s Hospital with a specific remit for children and families who attend there with aims to raise awareness of rare conditions, enhance the quality of care provided and promote participation in multi-centre research. SDSD and ORC are exploring opportunities to work collaboratively.
2017-04 Maintain a system of collecting data to enable reporting of information to audit service provision for SDSD There is a renewed focus on data collection in the form of ongoing SAAG (Scottish Audit of Anomalous Genitalia) and use of the I-DSD registry, an international database of DSD cases administered by the Office for Rare Conditions(ORC) in Glasgow. Network clinicians have begun to utilise this tool and will report on progress. See below table Figure 4 of total number of cases notified by the survey and through the genetics laboratories.
Figure 4 Total number of cases notified by the survey and through the genetics laboratories Reference [The Prevalence & Initial Management Of Atypical Genitalia & Delayed Sex Assignment In The Newborn In Scotland by Rodie ME
1, Jayasena A
1, McMillan M
1, Alenazi N
1, Mohamed Cassim S
2, Henderson S
1, Ahmed SF
1 on behalf of the Scottish DSD Network & the Scottish
Paediatric Endocrine Group] .
In addition the network is gathering data on the prevalence of surgeries related to DSD in Scotland by age range and surgery type through ISD. The data collected will identify the numbers of surgical procedures per year and age group. The data is not yet complete and the network plan to report on this at next reporting period. 2017-05 Ensure all stakeholders are represented within SDSD membership and different methods of communication are considered for the target audience.
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Stakeholders now include specialists from the following areas; endocrine, gynaecology, psychology, paediatric surgery, paediatric urology, nursing, midwifery and neonatology as healthcare professionals who will potentially identify cases and be involved in the management of ongoing care and support for patients and families. The network identified the need to improve how we communicate with stakeholders. Continuous quality improvement (CQI) is a core principle within Scottish Government guidance on managed clinical networks. The network prioritised communication and engagement within the network’s quality strategy with key areas of focus to improve interaction with SDSD website with more up to date information and regular newsletters. The network will focus on raising visibility and profile of the network through events and also through development of promotional materials. 2017-06 Initiate a review of resources available for DSD conditions The network has begun the process of reviewing and updating online resources. An Adolescent Hypospadias leaflet has been developed which can be found at http://www.sdsd.scot.nhs.uk/publications. The network has reviewed and updated the Glossary of Terms in relation to DSD. We plan to have all our patient information leaflets reviewed, updated and published on the website by May 2018. We were pleased to hear at a recent Steering group meeting that Specialist Medical Trainees were using our website to access information and resources and reported it as a ‘very useful ,helpful resource’ . 2017 -07 Develop referral standards for young people with a DSD An Adolescent referral pathway specific to females will be complete in May 2018. The adolescent female pathway details clinical presentations associated with the relevant conditions, the role of clinical specialities within the pathway, and a link to useful resources. The network will then begin a pathway for males. Females presenting with a DSD may present later in their development than males thus requiring different referral pathways. 2017-08 Contribute to the development and implementation of clinical standards and consensus guidance for the principals of management of infants or adolescents presenting with a suspected DSD through BSPED [British Society of Paediatric Endocrinology and Diabetes] This has taken place and these are published on our website under http://www.sdsd.scot.nhs.uk/health-care-professionals/sdsd-professional-resources/
3. Plans for the year ahead
3.1 Education
The network has organised a Families day in June 2018 following on from a previous SDSD
‘Girls day’ in May 2017. The topics include Anatomy and Genetics in DSD, Support, and
having a family.
The network is continuing to further develop educational presentations which can be viewed
online. Online lectures on initial presentation on DSD are almost complete. Once complete
the Steering group will look at next topic of presentations.
Deliver an Annual Symposium in March 2019 that takes into account feedback from 2018
and attracts a wider audience of DSD clinicians as well as representatives from Health
Visiting, Nursing and Midwifery.
Collaborate with the Office for Rare Conditions in Glasgow in delivering a Family event for
Hypospadias in May 2018.
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3.2 Stakeholder Engagement
The Family day will be used as an opportunity to engage with patients and families with the
aim of providing interesting presentations and gathering their feedback and experiences.
To strengthen links with Office for Rare Conditions Glasgow.
3.3 Patient and Parent Involvement
Conduct a scoping exercise of what support male patients need in terms of educational and
psychological support through a survey of the male DSD population.
To form closer links with the DSD community through DSD families
(http://www.dsdfamilies.org/)
To gather feedback from patients attending the multidisciplinary clinics.
3.4 Continuous Quality Improvement
A robust data plan has been created for the network which focuses on multiple sources of data. These include SAAG audit data, information on clinic numbers of attendance and non-attendance. This will also include number of DSD related surgeries undertaken across Scotland and adoption of the I-DSD register which has been developed for international use and will be utilised by clinicians from SDSD across Scotland. The network will continue to work on the Quality Strategy with key areas of focus:
Improve interaction with SDSD website with more up to date information and regular
newsletters. Continue to increase visibility and raise profile of the network through events
and also through development of promotional materials for example postcards, pens and
banners.
Review the data from web analytics to guide the network in terms of key searches on
website.
Elect a Data Subgroup to review what the network requires by way of data and to
measure progress against Quality Indicators. Review how we develop our data system
further to drive improvements in care for all patients with DSD.
3.5 Recruitment of new Lead Clinician
Dr Deeny is retiring in May 2018 following her role as Lead Clinician since 1st December 2015. It is anticipated there will be a seamless transition of recruiting and appointing a new a lead clinician with no adverse impact on the running of the network.
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4. Network governance
SDSD is part of the National Network Management Service in National Services Division. Through the management structure and terms of reference for the network Steering Group , SDSD 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.
Dr Miriam Deeny has been the Lead Clinician since 1st December 2015. Dr Deeny is funded to provide 1PA of activity per week to SDSD.
Mrs Martina Mungall is the Programme Manager.
Ms Philippa Cottam is the Programme Support Officer.
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Detailed Description of Progress over Reporting Period
Workplan SDSD 2017/2018
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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Objective Number
Strategic Objective
Linked Dimensions of Quality
Planned start/ end dates
Detailed Plan Available / Owner
Description of progress towards meeting objective as at 31/3/2018
Outcome / evidence RAGB status
2017-01 Involvement of key stakeholders to obtain feedback on service provision for SDSD and promote SDSD network
1,2,3,4,5,6 January 2017 – December 2017
Dr Martina Rodie / Programme Manager/ Dr Rebecca Crawford /and Martina Mungall since November 2017 to present date
Develop mechanisms for feedback including, data received through Dr Martina Rodie’s findings from SAAG audit which is available in Annual Report 2018 Work ongoing focusing on service provision through clinic checklists. The network concluded a series of patient and parent interviews in July 2017 .A clinic questionnaire to be investigated and consider trial by clinical Psychologist. Steering group membership was widened to reflect stakeholders. The network held a patient and families event for girls with DSD in Glasgow in May 2017 which provided valuable feedback to the network on the needs of patients within this group. As a result of discussions at this event the network collaborated with the Scottish Cervical Screening to issue a communication regarding no cervix exclusion for those with MRKH. As a result this patient group will no longer
SDSD programme of work reflects what patients and families have indicated are most important to their care needs
B
13
Objective Number
Strategic Objective
Linked Dimensions of Quality
Planned start/ end dates
Detailed Plan Available / Owner
Description of progress towards meeting objective as at 31/3/2018
Outcome / evidence RAGB status
receive reminders for screening when it is unnecessary.
2017-02 MDT clinics - provide care that is responsive to the needs of the patients and families and based on best practice.
1,2,3,4,5,6 Continuing through 2017 and into 2018
NHS GGC Chris Driver NHS Grampian Paula Midgley NHS Lothian
Multi-disciplinary clinics continue to take place at 3 sites in Scotland: Aberdeen, Edinburgh, & Glasgow. These dates are posted on the website.
Improve patient experience and reduce need for multiple visits to clinic to see different specialities.
B
2017-03 Improve access to education and training for Clinicians and increase clinicians competence in managing DSD Patients
1,2,3,4,5,6 February 2017-March 2018
Lead Clinician Programme Manager Mr Chris Driver / Dr Martina Rodie
The 2018 Symposium was well received with a range of speakers. An event focused on ‘early management of rare conditions in neonate’ took place in September 2017 in alignment with related networks and the Office for Rare Conditions in Glasgow [ORC]. Online lectures on initial presentation on DSD are almost complete to educate midwives and neonatal nurses encountering cases of DSD. Ongoing are discussions
Increased awareness of DSD conditions and patients perspectives, increased networking and awareness of related congenital anomalies and pathways of care. Improved quality of patient care due to better trained clinicians
B
14
Objective Number
Strategic Objective
Linked Dimensions of Quality
Planned start/ end dates
Detailed Plan Available / Owner
Description of progress towards meeting objective as at 31/3/2018
Outcome / evidence RAGB status
around learnpro modules for healthcare professionals. The network exhibited at the Scottish Maternity and Midwifery Festival in Edinburgh in November 2017.
2017-04
Maintain a system of collecting data to enable reporting of information to audit service provision for SDSD
1,2,3,4,6
July 2016 – December 2017
Martina Rodie
IMS
Programme Manager
Steering Group
The SAAG (Scottish audit of atypical genitalia) audit system continued through 2017 and data report is available in the networks 2018 Annual Report. The network made the decision in 2017 to trial utilising the I-DSD registry managed by the University of Glasgow capturing international and Scotland wide DSD data and uptake of this registry will be encouraged through the network. In addition the network will look to utilise the Endocrine CAS instance which captures DSD condition types which is ongoing. The network will additionally utilise data from ISD on frequency of DSD related surgeries.
To enable data collection, audit and research into DSD conditions, provide a baseline standard to build upon and drive future service improvement and monitoring of clinical outcomes.
B
15
2017-05 Ensure all stakeholders are represented within SDSD membership and different methods of communication with the target audience are considered
1,3,4,5 2017 – 2018 (reviewed 6 monthly)
Mr Chris Driver Programme Manager Programme Support Officer
Communication and engagement strategy draft mapped current stakeholders and new members have been invited to the steering group to reflect these groups. A midwife and patient representative have since joined the group and efforts will continue to reach all stakeholders. The network will review and make any necessary changes to the Terms of Reference at next Steering Group April 2018 reviewing responsibilities of Network Members. Commitment to regular newsletters with the first newsletter of 2018 distributed in April 2018 . A quality strategy focusing on how the network can make and deliver improvements in communication has been written.
To improve communication, access to network support and service provided through effective contact with all stakeholder groups who are best placed to ensure the scope of SDSD work is focused on and equitable for all service users
B
2017-06 Initiate a review of resources available for DSD conditions
1,3,4 January 2017 – December 2017
Programme Manager / Programme Support Officer/ Steering Group
Online resources reviewed and updated in 2018.Information Leaflet Hypospadias for Parents reviewed and updated and other Patient Information Leaflets updated. These will be monitored and updated as necessary. New leaflet developed for Adolescent Hypospadias In April 2018.
To ensure information and materials available to SDSD stakeholders is reliable and based on current evidence. B
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Objective Number
Strategic Objective
Linked Dimensions of Quality
Planned start/ end dates
Detailed Plan Available / Owner
Description of progress towards meeting objective as at 31/3/2018
Outcome / evidence RAGB status
2017 -07 Develop referral standards for young people with a DSD
1,2,3,4,5,6 January 2017 – 2018
Lead Clinician A draft adolescent pathway specific to females is under development to be completed by May 2018 for. A pathway for males will then be drafted following this.
To produce a document which guides clinicians in referring appropriately adolescent SDSD patients with new diagnosis and avoids unnecessary delay.
A
2017-08 Contribute to development and implementation of clinical standards and consensus guidance for the principals of management of infants or adolescents presenting with a suspected difference of sex development (DSD) being developed by BSPED (British Society of Paediatric Endocrinology and Diabetes)
May 2017 – 2018
Clinical Network Members
This has taken place and these are published on the network website under http://www.sdsd.scot.nhs.uk/health-care-professionals/sdsd-professional-resources/
There will be consistent and validated guidance for management of infants and adolescents presenting with suspected DSD, contributing to a more equitable provision of service. B
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Workplan SDSD 2018/2019 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.
21
Objective
Number
Smart Objective Linked
Dimensions
of Quality
Planned
start/ end
dates
Owner Description of progress
towards meeting
objective as at 1/04/2018
Anticipated
Outcome
RAGB status
2018-01 Increase level of key
stakeholder feedback
on service provision
for SDSD network
by March 2019
1,2,3,4,5,6 January
2018 –
March
2019
Dr Martina
Rodie,
Dr Rebecca
Crawford
Programme
Manager/
Martina
Mungall
Claire
Lawrie/
Mechanisms developed for
feedback including,
SAAG audit / survey
ongoing.
Focus on service provision
through clinic checklists
which is ongoing.
Review Steering group
membership to reflect
stakeholders which is
ongoing.
SDSD programme of
work reflects what
patients and families
have indicated are
most important to
their care needs
G
2018-02 MDT clinics - provide
care that is
responsive to the
needs of the patients
and families.
1,3,4,5,6 Continuing
through
2018 and
in to 2019
NHS GGC Chris Driver NHS Grampian Paula Midgley and Barbara Wardhaugh NHS
Lothian
Multi-disciplinary clinics continue to take place at 3 sites in Scotland: Aberdeen, Edinburgh, & Glasgow.
Improve patient experience and reduce need for multiple visits to clinic.
G
2018-03 Improve access to
education and
training for Clinicians
for the wider DSD
community in
Scotland .
1,2,3,4,5,6 February
2018 -
March
2019
Lead Clinician Programme Manager Martina Mungall Mr Chris
Driver / Dr
Martina
Clinical Leads identified to progress Learn Pro resources. Discussions in process how the network links with Office for Rare Conditions in Glasgow [ORC]. Family Event June 2018. Annual Symposium March
2019.
Increased
awareness of DSD
conditions and
patients
perspectives,
increased
networking and
awareness of related
congenital anomalies
G
22
Objective
Number
Smart Objective Linked
Dimensions
of Quality
Planned
start/ end
dates
Owner Description of progress
towards meeting
objective as at 1/04/2018
Anticipated
Outcome
RAGB status
Rodie and pathways of
care. Improved
quality of patient
care due to better
trained clinicians
2018-04
Maintain a system of collecting data to enable reporting of information to audit service provision for SDSD
1,2,3,4,6
January
2018 to
March
2019
Dr Martina Rodie
IMS
Programme Manager
Steering Group
The SAAG (Scottish audit of atypical genitalia) audit system to collect data on early years continued through 2018.
Network made a decision to trial utilising the I-DSD registry run from Glasgow capturing international and Scotland wide DSD data.
Clinic Data is captured at all DSD clinics and network will identify how many patients seen and in what area in past 12 months .
Analysis of surgical data to continue take place .
To elect a Data Subgroup.
To enable data collection, audit and research into DSD conditions, provide a baseline standard to build upon and drive future service improvement and monitoring of clinical outcomes.
G
23
2018-05 Ensure all
stakeholders are
represented within
SDSD membership
and different
methods of
communication
employed.
1,3,4,5 2018 – to
March
2019
(reviewed 6
monthly)
Lead Clinician Programme Manager Programme Support Officer
Review Steering group attendance reviewing network’s Terms of Reference to encourage engagement. Communication is issued via website, email, post, . Regular newsletters are also generated . Quality Strategy developed
in March 2018 to improve
interaction with the website
with more up to date
information and regular
newsletters.
To improve
communication,
access to network
support and service
provided through
effective contact with
all stakeholder
groups who are best
placed to ensure the
scope of SDSD work
is focused on and
equitable for all
service users
G
2018-06 Review of all
resources available
for DSD conditions
by July 2018
1,3,4 January
2018 –
December
2018
Programme Manager / Programme Support Officer/ Network
Members
Online resources reviewed and updated with new revision dates commenced and ongoing. New leaflets will be
developed for additional
conditions in 2018.
To ensure
information and
materials available to
SDSD stakeholders
is reliable and based
on current evidence.
G
2018 -07 Develop referral
standards for young
people with a DSD
[Females by July
2018]
1,2,3,4,5,6 January
2018 to
March
2019
carried
forward
from 2017-
2018
Workplan
Lead
Clinician
and Dr
Midgley
A draft adolescent pathway
specific to females is under
development to be finalised
in May 2018. A pathway for
males will be drafted
following completion of
Adolescent Female
Pathway in 2018
To produce a
document which
guides clinicians in
referring
appropriately
adolescent SDSD
patients with new
diagnosis and avoids
unnecessary delay.
G
2018-08 To strengthen links
with DSD families
and gather feedback
on the network and
January
2018 to
March
2019
Programme Manager Martina Mungall Network
DSD families will advertise
the networks family day
scheduled for 9th June
2018. SDSD will meet with
To have Patient and
Parent involvement
and feedback G
24
Objective
Number
Smart Objective Linked
Dimensions
of Quality
Planned
start/ end
dates
Owner Description of progress
towards meeting
objective as at 1/04/2018
Anticipated
Outcome
RAGB status
resources members DSD families lead.
2018-09 Provide a mapping
report of the
psychological
support
requirements for all
patients through
conducting a scoping
exercise.
1,4,5 March
2018 to
March
2019
Mr Chris Driver Dr Rebecca Crawford , Programme Manager Martina Mungall Programme
Support
Officer
Philippa
Cottam
Dr Crawford to draft a brief of what Psychology provisions should be available and then raised for consideration through the Director of Planning . Consider survey for males
on the website on what they
need in terms of support.
To ensure the network has feedback from males that can help shape services. All patients
presenting with a
DSD will have
appropriate support
and engagement
with specialist care
according to
confirmed needs and
conditions .
G
2018-10 Network Minor
Review is planned
for November 2018.
1,2,3,4,5,6 Lead
Clinician,
Senior
Programme
Manager
Liz
Blackman,
Programme
Manager
Martina
Mungall
Key Stakeholders to support the review and will be an agenda item on future Steering Groups.
The Network to be
evaluated and
recommendations for
future improvements
made.
G
2018-11 Promote SDSD
network and improve
website interaction
1,2,3,4,5 April 2018 Programme
Manager,
PSO, Lead
SDSD has developed a
quality Strategy including a
QI plan and Driver
Network members
and Stakeholders
will be better
G
25
Objective
Number
Smart Objective Linked
Dimensions
of Quality
Planned
start/ end
dates
Owner Description of progress
towards meeting
objective as at 1/04/2018
Anticipated
Outcome
RAGB status
by 20% Clinician Diagram. engaged with the
network and the
Network will have
more up to date
documents and
guidelines.
2018-12 Complete
recruitment to Lead
Clinician Post by July
2018
1,3 May 2018 Associate Programme Director Catriona
Johnson
Programme
Manager
Martina
Mungall
Seamless transition
to new lead clinician.
G
26
Appendix 1: Network membership Name Job Title Board Group
Liz Blackman Senior Programme Manager NHS NSS Steering Group
Claire Lawrie Programme Manager NHS NSS Steering Group
Martina Mungall Programme Manager NHS NSS Steering Group
Philli Cottam Programme Support Officer NHS NSS Steering Group
Rebecca Crawford Consultant Clinical Psychologist NHS GG+C Steering Group
Miriam Deeny Consultant Gynaecologist NHS GG+C Steering Group
Christopher Driver Paediatric Surgeon NHS Grampian Steering Group
Jayne Forrest Midwifery Manager NHS Grampian Steering Group
Louise Copeland Patient Representative NHS Tayside Steering Group
Ruth McGowan Consultant in Clinical Genetics NHS GG+C Steering Group
Paula Midgley Consultant Geneticist NHS GG+C Steering Group
Martina Rodie Consultant Neonatologist NHS GG+C Steering Group
Aparna Sastry Consultant Obstetrics and Gynaecology
NHS GG+C Steering Group
Barbara Wardhaugh
Endocrine Nurse Specialist NHS Lothian Steering Group
Martina Mungall Programme Manager NHS NSS Data / QI Group
Philli Cottam Programme Support Officer NHS NSS Data / QI Group
Miriam Deeny Consultant Gynaecologist NHS GG+C Data / QI Group
Martina Rodie Consultant Neonatologist NHS GG+C Data / QI Group
Appendix 2: Finance
Network Type 2017-18
Scottish Differences of
Sex Development
Catering £ 65.00
Exhibitions and Conferences £ 1,079.60
Internal Catering £ 8.25
Other provisions £ 60.00
Grand Total £ 1,212.85
Catering
Exhibitions and Conferences
Internal Catering
Other provisions
27
Appendix 3: March Symposium Feedback
28
Appendix 4: References
1.Ahmed, S. F. et al. Prevalence of hypospadias and other genital anomalies among singleton births, 1988-1997, in Scotland. Archives of disease in childhood. Fetal and neonatal edition 89, F149-151 (2004).
2. The Prevalence & Initial Management Of Atypical Genitalia & Delayed Sex Assignment In The Newborn In Scotland. Rodie ME1, Jayasena A1, McMillan M1, Alenazi N1, Mohamed Cassim S2, Henderson S1, Ahmed SF1 on behalf of the Scottish DSD Network & the Scottish Paediatric Endocrine Group
3. Thyen, U., Lanz, K., Holterhus, P. M. & Hiort, O. Epidemiology and initial management of ambiguous genitalia at birth in Germany. Hormone research 66, 195-203, doi:10.1159/000094782 (2006).
4.Scottish Differences of sex Development Website: www. http://sdsd.scot.nhs.uk