1

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

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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

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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

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

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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

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

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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.

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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

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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

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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

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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