scottish differences in sex development national managed ...network name was also changed from...

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Scottish Differences in Sex Development

National Managed Clinical Network

ANNUAL REPORT 2016/17

Lead Clinician: Miriam Deeny

Programme Manager: Margaret Kelman to July 2016, Katie Clayton July 2016- present

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Contents Executive summary ...................................................................................................................................... 3

1. Aim/ Purpose/ Mission Statement of network ......................................................................................... 4

2. Report against Workplan April 2016 – March 2017 ................................................................................ 4

3. Looking Forward .................................................................................................................................... 8

3.1 Education ........................................................................................................................................ 8

3.2 Stakeholder Engagement ................................................................................................................ 8

3.3 Patient and parent involvement ....................................................................................................... 8

3.4 Continuous Quality Improvement ..................................................................................................... 8

4. Network governance .............................................................................................................................. 9

Appendix 1: Network membership .............................................................................................................. 10

Appendix 2: Finance ................................................................................................................................... 11

Appendix 3: Detailed Workplan SDSD 2016/17 .......................................................................................... 13

Appendix 4. Workplan SDSD 2017/2018 ................................................................................................... 17

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Executive summary

The Scottish Differences in 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 girls is under development.

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’ in sex development..

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 in Glasgow. The network is also supporting participation in a survey to inform the standardisation of DSD guidelines by the British Society of Paediatric Endocrinology and Diabetes (BSPED).

The network has continued to promote the education of multidisciplinary clinicians with an annual symposium featuring a wide range of topical presentations and work is underway to develop on line learning tools and information resources for front line neonatal clinicians encountering suspected SDSD cases. In the year ahead SDSD is supporting delivery of an education event focusing on a wide range of rare conditions in neonates in 2017.

Through its achievements in 2016/17 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 in sex development (DSD) in Scotland. Sex assignment is usually performed immediately after birth. However, in some situations where the child is born with atypical genitalia due to a difference of sex development (DSD), assignment may be delayed or the child may undergo sex reassignment within a few days of birth. Whilst atypical genitalia are not uncommon and may occur in 1 in 300 births (1), delayed sex assignment is felt to be rarer. It is estimated that 1 in 4000 live births may present with genitalia that is so atypical that a decision on the assignment of sex may be impossible at birth. In 2016 the incidence of atypical genitalia requiring specialist input within the first month of birth, in term newborns in Scotland was 1 in 3480. (2)

Network membership is made up of a multidisciplinary group of healthcare professionals who provide care to children and adults with a DSD 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. Aim/ Purpose/ Mission Statement of network

The SDSD Network has a remit to support achievement of equity of care across Scotland. The objectives for the Network are:

To support provision of high quality care to children, adolescents and adults with differences in sex development in Scotland

To be patient centred and support provision of seamless care between organisations and professional groups

To set standards of care and to audit the care provided

To engage with and provide opportunities for service users to provide feedback on care expectations and delivery

2. Report against Workplan April 2016 – March 2017

2016-01 Develop a Neonatal Integrated Referral Pathway to aid front line medical professionals who encounter cases of newborn babies with suspected DSD

Work on this pathway is complete, with the final draft of the pathway endorsed by SDSD and related networks including SPEG and regional Neonatal Networks. The network determined that it was unfeasible to design a generic SDSD care pathway due to the diverse range of conditions associated with DSD. Therefore agreement was reached to develop a referral pathway to ensure that all clinicians have access to consistent information. The pathway is designed to support peripheral clinicians who may encounter a case of DSD, possibly for the only time in their career. It specifies what initial tests should be carried out, who should be involved and how to provide effective support and explanations to parents in the first days by employing some key and consistent messages.

The way parents and families are communicated with in the first days is linked closely to long term satisfaction with the service. This is demonstrated by the below responses to the Scottish Audit of Atypical Genitalia (SAAG)2016 where satisfaction is polarised at either end of the satisfaction scale, although rated highly by most respondents.

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Communication and Provision of information - Scottish Audit of Atypical Genitalia Results 2016 (2)

Figure 1. Question: By what method did you receive information relating to your child’s condition? Scottish Audit of Atypical Genitalia 2016 (M. Rodie 2017)

Figure 2. Scottish Audit of Atypical Genitalia 2016 (M. Rodie 2017)

The Neonatal Integrated Referral Pathway is designed to augment detailed clinical referral pathways within individual NHS Boards. The NIRP incorporated views from key stakeholders including Paediatric Endocrine (SPEG) and regional Neonatal Networks and was endorsed by the SDSD Steering Group, The pathway was published on the SDSD website in April 2017 and will also be issued direct to all stakeholders. It was presented at the SDSD Annual Educational

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Symposium and will feature as a regular agenda item in the monthly neonatal teleconference lecture series as a means of assessing its effectiveness and monitoring its use. .

2016-02 Develop a Communication and Engagement Strategy ensuring all stakeholders are identified and represented within SDSD Membership

This strategy was drafted in mid 2016. The steering group membership has expanded following a review of geographical and specialist reach; new midwifery, neonatal and adult patient representatives have been invited to join, reflecting the current focus of the work programme. Different methods of communication have also been utilised to reflect the range and needs of various audiences. The new SDSD website has been launched, targeted at both service users and healthcare professionals. The network has shared information through hard copy flyers to advertise patient events in all clinical centres, through contact with members of support groups on twitter, facebook and email and through face to face interviews conducted with parents and patients at multi disciplinary clinics in Glasgow. The Network Lead Clinician Dr Miriam Deeny has also participated in a short film produced by the LGBTI charity Pink Saltire; highlighting the area of intersex in Scotland which has reached a wide range of stakeholders and helped to promote awareness of SDSD. (3)

2016-03 Develop a new SDSD website which will reflect stakeholder needs and contain reliable information and support materials.

The refreshed SDSD website has a new look and feel. Developed in-house, it is designed to appeal to all users and captures the diversity and range of those affected by DSD. The website hosts a number of resources; patient information leaflets; programmes for education events; links to external resources and support sites and information about upcoming events

Figure 3. Scottish Differences in Sex Development Website

2016-04 Develop meaningful patient and family engagement.

SDSD has in the past tried to capture patient and family feedback using leaflets, questionnaires and an online forum, with limited success. The network is now conducting one to one interviews with patients and their families. A semi structured interview template has been designed with open questions intended to engage patients and parents and obtain honest feedback on the services

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provided (Appendix 1). To date, eight interviews have been held at four clinics over a nine month period in Glasgow. The sample is too small to draw conclusions on common themes however, each interview provides valuable insight into the experience of individual patients and families. These have been used to improve services:

Interview A Adolescent (F) and parent were interviewed and indicated the path to diagnosis and treatment had been difficult and inefficient with a lack of understanding at primary care level of condition and correct referral route. The patient had also felt pressured into psychology appointments before she was ready and the parent was clearly distressed and frustrated at being unable to provide her daughter with answers. Following this interview the network looked at the way Clinical Psychology is offered and whether there should be flexibility and a different approach to framing the benefits of psychology input. Interview B Parents of an infant (M) were interviewed and indicated the care received had been excellent and were confident the clinicians had a genuine care for patient’s wellbeing. They raised possible improvements in the way information is communicated. They were given conflicting information about the number of surgeries their child would require and any alternative options. They also lacked a key contact when post operative issues arose necessitating a hospital admission. This case highlighted the need for clear communication and as such the network has sought to identify a key contact for each centre to ensure cases can be escalated swiftly. This list of link clinicians can be found in the Neonatal Referral Pathway. Interview C Teenager (M) and parent were interviewed and indicated they felt the clinicians were supportive and the patient was not left to manage alone; with reassurance in the form of regular appointments. Improvement was felt to be required in the information available to the patient who, as he grew up, had more questions concerning long term outcomes which his parents were unable to answer. Patient was told he ‘might’ need surgery but this had not been confirmed and the patient’s GP did not have sufficient knowledge to provide any meaningful answers. The patient and parent indicated that better information on specific conditions and somewhere to voice questions would be beneficial. This case highlighted a gap in the approach to transition for patients with DSD from the paediatric environment of parental decision making to the patient having greater autonomy and questions regarding condition and treatment. Katie Clayton presented the findings of these patient interviews at the SDSD Annual Symposium in February 2017 to highlight key areas for SDSD clinicians. An adult patient with MRKH was also invited to speak about her experience which was incredibly well received. A result of this more focused patient and family engagement has been the change of Network name from ‘Disorders’ to ‘Differences’ in Sex Development to more accurately describe the range of conditions associated with DSD.

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2016-05 Improve Patient Experience by reducing the need for multiple visits to the clinic

The Multidisciplinary clinics continue in Aberdeen, Glasgow and Edinburgh, with evidence of positive impact obtained through patient feedback. The network is also developing a tool to improve understanding of issues and concerns for patients and their families when attending the clinic and to help them to consider what they want to get out of their appointment. The tool is based on one used with good effect for oncology patients. The SDSD version of this clinic checklist was produced by Clinical Psychologist Dr Rebecca Crawford and will be launched from July 2017.

2016-06 Provide Educational Opportunities for stakeholders to improve overall service

The 12th SDSD annual symposium was held at COSLA Edinburgh in February 2017, bringing a range of DSD clinicians together to share learning and case studies. The event was attended by 26 delegates from a range of NHS Boards and specialities. Presentations included SDSD Neonatal Pathway, updates and advances in genetic testing, SAAG 2016 update, patient experience, clinical MDT cases, and surgical techniques. 94% of attendees rated the event as very good and valuable feedback was obtained to enable improvement and forward planning for the 2018 Symposium.

3. Looking Forward

3.1 Education

In September 2017 ‘Early Management of Rare Conditions in the Neonate day’ education

event will be held in Glasgow covering clinicians from a number of networks and disciplines

including DSD

There are plans to produce an e-learning module for midwives and neonatal nurses to

educate them on how best to support parents of babies born with DSD in the first days

3.2 Stakeholder Engagement

An adolescent referral pathway specifically for girls is under development and due for

completion by August 2017

3.3 Patient and parent involvement

An SDSD Girls’ Day is scheduled for 13th May focusing on women and families affected by

Mayer Rokitansky Kuster- Hauser syndrome (MRKH), Congenital Adrenal Hyperplasia

(CAH) and Androgen Insensitivity Syndrome (AIS)

The network has sought to develop further patient information leaflets for specific male DSD

conditions and plan for a patient event focused on males

An MRKH information leaflet is under development for girls due for completion in mid 2017

3.4 Continuous Quality Improvement

A robust data plan has been created for the network which focuses on multiple sources of

data. These include the Scottish Audit of Atypical Genitalia, information on clinic numbers

and attendance, 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. Results from these sources will be

presented in mid 2017.

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4. Network governance

SDSD Lead Clinician – Dr Miriam Deeny

SDSD Programme Manager – Katie Clayton

SDSD Programme Support Officer – Liam Anderson

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Appendix 1: Network membership

Membership of the Managed Clinical Network Steering Group

Miriam Deeny, Consultant Gynaecologist Clinical Lead, NHS GG&C

Paula Midgley, Consultant Neonatologist, NHS Lothian

Chris Driver, Consultant Paediatric Surgeon, NHS Grampian

Barbara Wardhaugh, Endocrine Nurse Specialist, NHS Lothian

Ruth McGowan, Consultant in Clinical Genetics, NHS GG&C

Jayne Forrest, Senior Midwife & Lecturer, NHS Grampian

Jimmy Lam, Consultant Paediatric Surgeon, NHS Lothian

John Telfer, Consultant Plastic Surgeon, NHS GG&C

Martin Flett, Consultant Paediatric Surgeon, NHS GG&C

Stuart O'Toole, Consultant Paediatric Surgeon, NHS GG&C

Will Anderson, Consultant Plastic Surgeon, NHS Lothian

Louise Copeland, Patient Representative, Grampian

Liz Blackman, Senior Programme Manager, NHS NSS

Katie Clayton, Programme Manager NHS NSS

Liam Anderson, Programme Support Officer, NSS

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Appendix 2: Finance

SDSD Financial Statement for the year 1 April 2016 to 31 March 2017

Budget Expenditure £ %

Meeting venue £220.00 7%

Catering £30.00 1%

Annual Event £2,337.50 73%

Travel & Accommodation £175.90 6%

Girls' Day £433.33 14%

Total £3,196.73

£220.00 £30.00

£2,337.50

£175.90 £433.33

£0.00

£500.00

£1,000.00

£1,500.00

£2,000.00

£2,500.00

£3,000.00

£3,500.00

£4,000.00

£4,500.00

£5,000.00

Tota

l Sp

en

d

SDSD Annual Spend 2016- 2017

Meeting venue

Catering

Annual Event

Travel & Accommodation

Girls' Day

Maximum Budget

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Appendix 3: Detailed Workplan SDSD 2016/17

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

Detailed Plan Available / Owner

Description of progress towards meeting objective

Anticipated Outcome

RAGB status

2016-01 Develop a Neonatal Integrated Referral Pathway to aid front line medical professionals who encounter cases of newborn baby with suspected DSD.

1,2,3,4,5,6 January 2016 – November 2016

Lead Clinician

Pathway is complete and awaiting only supporting regional neonatal pathways to link in. Pathway is available on the SDSD Website and will have ‘launch’ in April 2017

A consistent and effective approach for managing newborn DSD cases and supporting families. Improved communication between neonatal staff and specialist clinicians. Equitable provision of care across all centres.

B

2016-02 Develop a communication and engagement strategy to ensure all stakeholders are identified, represented within SDSD membership and effectively communicated with. Key deliverables of new website

1,3,4,5,6 Scoping work Jan- March 2016 Completed document August 2016

Programme Manager

Draft communication and engagement strategy in place. New Steering Group members appointed to reflect stakeholders including a senior midwife and adult patient rep. New website is live as of October 2017

To improve communication with stakeholders, including patients and families, leading to improved patient support and better access to supporting resources

B

2016-03 Develop meaningful patient and family engagement

1,2,3,4,5,6 Feb 2016 to May 2017

Programme Manager/ Lead Clinician

Patient event ‘SDSD Girls Day’ planned for May 2017

Network in touch with needs/priorities of families and responds

G

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Objective Number





Anticipated Outcome

RAGB status

Patient interviews continue at Multidisciplinary clinic in Glasgow.

accordingly.

Patient experiences help inform need for adolescent care pathway and other service improvement opportunities Families are better informed of network activities.

2016-04 Improve patient experience by reducing the need for multiple visits to the clinic.

1,2,3,4,5,6 Ongoing process throughout 2016/17

Faisal Ahmed NHS GGC Chris Driver NHS Grampian Paula Midgley NHS Lothian

Multi-disciplinary clinics take place at 3 sites in Scotland: Aberdeen, Edinburgh, & Glasgow.

MDT clinics reduce the need for multiple visits.

Provide care that is responsive to the needs of the patients.

MDT clinics based on best practice.

G

2016-05 Provide educational opportunities for stakeholders to improve overall service including

1,2,3,4,5,6 August 2016 – March 2017

Programme Manager / Steering Group

Annual Symposium held in February 2017, including patient experience presentation

Stakeholders are better equipped to deal with DSD cases and provide optimum care and

G

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Objective Number





Anticipated Outcome

RAGB status

annual symposium and creation of an E-Learning Module to train Midwifes and other healthcare professionals on how to manage a case of newborn DSD and support families

Clinical leads identified to progress e-learning resource

Congenital Anomalies education day to be held in October 2017, facilitated by office for rare conditions in Glasgow.

support for families

2016-06 Use data to determine incidence of DSD in Scotland and identify improvement opportunities for different patient groups including newborns and adolescents

1,2,3,4,5,6 July 2016 – end 2017

IMS / Programme Manager

Data collection methods identified including I-DSD registry which will be explored as a data collection solution in conjunction with Endocrine CAS instance into 2017. To date SAAG audit has been key source of data

Data gathering will continue as evidence to support long term service improvement for patients

A

2016-07 Improve access to reliable information for both clinicians and patients on specific conditions

1,2,3,4,5,6 August 2016 – end 2017

Lead Clinician

AIS leaflet for girls completed and approved by steering group. Boys leaflet to be developed and leaflet for MRKH in draft

Consistent information available to clinicians and families

A

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Appendix 4. 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




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

Develop mechanisms for feedback including, 1)focus on early years in conjunction with SAAG audit / survey 2) focus on service provision through clinic interviews and clinic checklists 3)Expanding steering group membership to reflect stakeholders

SDSD programme of work reflects what patients and families have indicated are most important to their care needs

A

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 in to2018

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.

Improve patient experience and reduce need for multiple visits to clinic.

G

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 Clinican Programme Manager Dr Chris Driver / Dr Martina

The 2017 Symposium was well received with range of speakers including a talk from a patient of her experience living with MRKH. An event focused on ‘early management of rare conditions in neonate’ is scheduled for September

Increased awareness of DSD conditions and patients perspectives, increased networking and

G

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Objective Number

Strategic Objective





Outcome / evidence

RAGB status

Rodie 2017 in alignment with related networks and the office for rare conditions in Glasgow. A learnpro module based on the neonatal referral pathway will also be developed to educate midwives and neonatal nurses encountering cases of DSD.

awareness of related congenital anomalies and pathways of care. Improved quality of patient care due to better trained clinicians

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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 to collect data on early years will be continued through 2017. In addition SDSD are exploring the option of utilising the I-DSD registry run from 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 and 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.

A

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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. Communication is issued via website, email, post, Royal college of midwives, steering group membership and related networks including SPEG and regional neonatal networks. Regular newsletters are also generated

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

A

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 with new revision dates in November 2016. These will be monitored and updated as necessary. New leaflets will be developed for additional conditions in 2017

To ensure information and materials available to SDSD stakeholders is reliable and based on current evidence.

A

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 girls is under development to be reviewed for comment by steering group in July 2017.

To produce a document which guides clinicians in referring

R

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Objective Number

Strategic Objective





Outcome / evidence

RAGB status

A pathway for boys will be drafted in late 2017/ early 2018

appropriately adolescent SDSD patients with new diagnosis and avoids unnecessary delay.

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References

1. Ahmed SF et al. Regional & temporal variation in the occurrence of genital anomalies amongst singleton births, 1988 - 1997, Scotland. Arch Dis Child 2004; 89:F149-F151.

2. Rodie M, Scottish Audit of Atypical Genitalia end of year report 2016 p1

3. Figure 1. Rodie M, Scottish Audit of Atypical Genitalia end of year report 2016 p9

4. Figure 2. Rodie M, Scottish Audit of Atypical Genitalia end of year report 2016 p9

5. Pink Saltire ‘Introducing Intersex’ 2016 https://www.youtube.com/watch?v=onRPZEPDoPs (accessed March 2017)

6. Figure 3. Scottish Differences in Sex Development Website http://www.sdsd.scot.nhs.uk/

https://www.youtube.com/watch?v=onRPZEPDoPs

http://www.sdsd.scot.nhs.uk/

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