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Scottish Disorders of Sex Development

National Managed Clinical Network

ANNUAL REPORT 2015/16

Lead Clinician Rebecca Crawford to July 2015,

Miriam Deeny Nov 2015 – present

Programme Manager: Margaret Kelman

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

1. Introduction .......................................................................................................................................................4

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

3. Report against Workplan between 1 April and 31 December.......................................................................4

4. Plans and progress for the year January to December 2016 as at 31 March.............................................6

5. Network governance ........................................................................................................................................7

Detailed Workplan ....................................................................................................................................................8

6. Workplan – SDSD 2016/17..............................................................................................................................9

7. Detailed description of progress over reporting period ...............................................................................11

Appendix 1: Network membership ........................................................................................................................15

Appendix 2: Finance ..............................................................................................................................................16

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Executive summary

During 2015/16 the SDSD network underwent a review in line with NHS Scotland’s national commissioning policy. The review was undertaken as a matter of routine, with the purpose of determining the extent to which SDSD was meeting commitments agreed within the commissioning process and to inform a decision on continuing central funding.

Throughout the period of review the network continued to progress its annual workplan; supporting multidisciplinary care in clinics; providing education and awareness raising of DSD care through a symposium and redesigned website and exploring options to engage more effectively with stakeholders.

The review identified that the model in each of the three regional centres delivers an exemplary clinical service and SDSD effectively supports the wide range of specialist clinicians, providing excellent education and learning opportunities. It also identified that the focus and activity of the network did not reflect the full scope of the patient pathway and that work was needed to identify and deliver the optimal level of service consistently across the three regional centres. Additional gaps were noted around how the network engaged with patients and families and involved stakeholders in its work.

The review findings and recommendations were considered in November 2015 by the National, Patient, Public & Professional Reference Group (NPPPRG) and National Specialist Services Committee (NSSC).

They concluded in December 2015 that there was insufficient evidence that the network was fulfilling its defined remit to merit central funding for a further three years. They agreed that in the first instance the network should be supported to continue for a further year with a specific remit to develop and deliver a workplan that would address the gaps identified and that progress should be monitored closely through commissioning governance structures.

From January 2016, with a focus on securing its future and under new clinical leadership, the network has been working towards meeting that directive. While clinical resource to progress activity is limited the network has been able to demonstrate evidence of progress in the right direction and is optimistic this will continue.

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1. Introduction

The Scottish Disorders of Sex Development (SDSD) national managed clinical network (NMCN) (formerly the Scottish Genital Anomalies Network, SGAN) was established in 2005 to improve support for any individual born with a disorder of sex development (DSD) in Scotland.

The phrase ‘genital anomaly’ covers a wide range of diagnoses. Some conditions, such as undescended testes and hypospadias are common but others are rare. Genital malformations, excluding undescended testes are reported to occur at an approximate rate of 4-5 per 1000 live births. It is estimated that 1 in 4000 live births may have a genital abnormality that is so abnormal that a decision on the assignment of sex may be impossible at birth. Data from preliminary studies by SAAG (Scottish Audit of Atypical genitalia), suggest that, in Scotland, genital anomalies occur at a rate of about 5.8 per 1000 births.

Network membership is made up of a multidisciplinary group of healthcare professionals who provide care to children and adults with a DSD or who are born with an anomaly of the genitalia.

2. 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 deliver high quality care to children, adolescents and adults with disorders of sex development in Scotland.

To be patient centred and deliver seamless care between organisations and professional groups.

To set standards of care and to audit the care provided.

3. Report against Workplan between 1 April and 31 December

The robustness of the network review process means that the resource requirements associated with it are significant, both for the network members and the NNMS network team. As such, for SDSD, fulfilling these requirements was the main focus of 2015/16 activity, culminating in a report to NSSC in November.

2015.1 -Involvement of key stakeholders to obtain feedback on service provision for SDSD and promote SDSD network. The work on this priority has been slow, the focus of the work was

to look at provision of needs and support for DSD families in early years in line with the SAAG audit. The work to develop mechanisms for feedback included; A survey to find out what support patients attending clinics needed and gather information on clinic visits, this was trialled at the clinic, however, in response to feedback from families, other options explored included an online forum held over a weekend, which attracted five interested families. 2015.2 - MDT clinics - provide care that is responsive to the needs of the patients and families and based on best practice.. The SDSD clinics continue to provide quality clinical care

with a wide range of specialist health care professionals from across a range of professions.

2015.3 - To improve access to education for clinicians and increase clinicians competence in managing patients with DSD. The SDSD Educational Symposium was held in March 2016. The symposium programme this year incorporated the ‘family experience’. The event opened with an address by a patient with MRKH (Mayer Rokitansky Küster Hauser syndrome), who outlined her experience of diagnosis, treatment, and living with her condition. Her mother’s experience was also outlined. This set the tone of the day well, with discussion focused on what could have improved the journey. The symposium also highlighted the work that clinicians are currently

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undertaking within their clinical duties surrounding DSD, including presentations on transition from paediatric to adult services and the development of a checklist to ensure patients were not lost to follow-up, as well as new research and audit information on DSD.

2015.4- Maintain a system of collecting data to enable reporting of information to audit service provision for SDSD. The SAAG audit is collecting data on DSD across Scotland with a

focus on the early years, but there is no collection of data nationally for transition. The network has therefore now agreed to collect audit data on patients accessing the DSD clinical service. This is in addition to contributing to the SAAG audit. It is worth noting that the data set will include information relating to children and young people and it is anticipated this will be useful in informing transition planning in the future.

2015.5 - Ensure all stakeholders are represented within SDSD membership and different methods of communication with the target audience are considered. A new look newsletter

has been developed and distributed to SDSD contacts, and work has been undergoing to strengthen contacts, especially within the voluntary / support organisations involved with DSD. Work has been progressing on the DSD website which is being redesigned to better meet the needs of stakeholders.

2015.6 - Initiate a review of resources available for DSD conditions. There was insufficient capacity to undertake this exercise and has therefore been postponed on the workplan.

2015 .7 - Develop transition standards for young people with a DSD. This work has not

progressed and has been carried forward to be undertaken within the 2016 workplan following completion of work to develop a perinatal pathway.

In December 2015, the NSSC directed that a new workplan should be developed to address gaps in three key areas: stakeholder involvement; family engagement and the development of pathways of care. The network focus accordingly turned to the development of this new workplan as below. A new lead clinician was recruited and is taking the network forward to address these challenges

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4. Plans and progress for the year January to December 2016 as at 31 March.

Following the review of the network, the steering group has focused on addressing the issues raised by the NPPPRG and NSSC and have revised the workplan in line with the recommendations.

1) To develop a perinatal integrated care pathway for when a baby is suspected of

having a DSD

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 care pathway to ensure that all clinicians have access to consistent information that details who to contact at the point where an anomaly is detected in early life. Work is currently progressing to identify the lead contacts within each NHS Board. A draft pathway, developed for NHS Greater Glasgow & Clyde, was presented at the recent SDSD Symposium and agreement has been reached that it should form the basis of the SDSD referral care pathway.

2) Ensure all stakeholders are represented within the SDSD membership and different

methods of communication with the target audience are considered.

A communication and engagement document has been drafted for consideration and approval from the SDSD steering group. The SDSD stakeholder list is currently being reviewed by the steering group and some additions have been recommended. Work is ongoing to engage voluntary organisations involved in DSD to inform an effective approach for involving patients and their families within the network.

The focus of the recent educational symposium on patient experience and providing a platform for the patient and parent voice to be heard and influence the work of the network was a significant step toward better and more visible patient engagement.

In addition links with the regional neonatal networks have been further developed, in order to raise the profile of the network with the staff that are most likely to identify a newborn with a DSD. For this same reason, links with obstetric staff are also being strengthened and in January 2016 the Programme Manager made a presentation to obstetric students on DSD.

3) Develop meaningful patient and family engagement

As a result of initial work to explore opportunities to facilitate a support group for MRKH, a network member has come forward and expressed an interest in setting up a support group. SDSD will support the set up and ongoing development of the group.

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 exploring the possibility of conducting one to one interviews with patients and their families. A questionnaire has been drafted and patients will be invited during clinic visits. to be interviewed by a network member

4) Improve patient experience and reduce the need for multiple visits to the clinic

SDSD aim is to develop a tool to assess the effectiveness of MDT clinics with a view to developing care quality indicators that can be used to measure best practice and inform service planning and development.

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The proposed SDSD perinatal pathway will be used as a base for developing care quality indicators based on the recommendations within it. Going forward, the network will consider ways of collecting data and evaluating outcomes as part of the development of the pathway.

At present the network is collecting data on the number of patients accessing the DSD clinic service on a monthly average across the three regional sites and how far they are travelling to access the service. This has been completed for NHS GGC; however information for NHS Lothian and NHS Grampian clinics is incomplete.

Through the psychology department the network is also developing a tool to inform 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 tool will be tested within the Glasgow DSD clinic in July.

5) Improve access to reliable information for both clinicians and patients

Androgen Insufficiency Syndrome (AIS) leaflets for parents are being developed by the network, one for girls and one for boys. The leaflet for girls will be presented at the July steering group for approval.

Risks/issues going forward

The network has been granted a year’s extension on the understanding that the network achieves the recommendations set out by the NPPPRG in February 2016. Therefore this is the key priority for the year ahead. However there is a risk that lack of capacity and engagement from within the clinical community to support that work will compromise the network’s ability to deliver its commitments within the agreed timeframe and this will lead to a decision to decommission the network ,

5. Network governance

The network has a new lead clinician. Dr Miriam Deeny, Consultant Gynaecologist from NHS Greater Glasgow and Clyde, appointed in November 2015, taking over from Rebecca Crawford, consultant Psychologist, NHS Greater Glasgow and Clyde, whose tenure ended in July 2015.

SDSD Programme Manager – Margaret Kelman

SDSD Programme Support Officer – Liam Anderson

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Detailed Workplan

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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6. Workplan – SDSD 2016/17

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 Perinatal Integrated Referral

Pathway for when a baby is suspected of having a DSD.

1,2,3,4,5,6 January 2016 – November

2016

Miriam Deeny

Link clinicians in NHS Boards identified.

Pathway for Glasgow presented to annual symposium. Lead

Clinician leading work to adapt this for use across Scotland.

To provide consistent

information for clinicians. Improved

communication between neonatal staff and specialist

clinicians. Equitable provision of care across all

centres.

G

2016-02 Ensure all stakeholders are

represented within SDSD membership and different

methods of communication with

the target audience are considered.

1,3,4,5,6 Scoping work Jan- March

2016 Completed

document August 2016

Margaret Kelman

– in draft

Draft communication and engagement strategy in

place. Scoping work underway to review existing

contacts and identify and map potential

stakeholders, including clinical staff practicing on the periphery.

To Improve communication

with stakeholders, including patients and families,

leading to Improved patient

support

G

2016-03 Develop meaningful patient and family

engagement

1,2,3,4,5,6 Feb to October 2016

Margaret Kelman

Patient/Parent presented at SDSD Symposium

2016; well received. Discussion has taken place re SDSD

supporting establishment of a MRKH family support group

To involve patients and their families;

in order to obtain feedback on the service provision

for SDSD again, leading to improved patient

care

G

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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

2016-04 Improve patient

experience and reduce the need for multiple visits to the

clinic.

1,2,3,4,5,6

Completion of initial data

by July 2016

Miriam

Deeny NHS GGC Chris Driver

NHS Grampian

Barbara Wardhaugh NHS

Lothian

Multi-disciplinary clinics

take place at 3 sites in Scotland: Aberdeen, Edinburgh, & Glasgow.

Plan – to develop a tool that will enable effective collection of information

to inform NHS Scotland where patients are travelling from and being

treated and managed with DSD within Scotland. Glasgow clinic

attendance has been plotted against NHS

Board of residence and discussed with SDSD members.

.

To provide care that is responsive to the needs of the

patients, with MDT clinics looking to reduce the need for

multiple visits and based on best practice.

G

2016-05 Improve access to

reliable information for both clinicians

and patients on Androgen Insufficiency

Syndrome (AIS)

1,2,3,4,5,6 June 2015 –

June 2016

Miriam

Deeny

Faisal Ahmed

Agreement to split into

two leaflets – Girls and boys

AIS leaflet for girls in draft format, awaiting final approval from

steering group Leaflet has not as yet been drafted.

Consistent

information available to

clinicians and families

A

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7. Detailed description of progress over reporting period

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

Outcome / evidence

RAGB status

2015-01.1 Involvement of key

stakeholders to obtain feedback on service provision

for SDSD and promote SDSD network

1,2,3,4,5,6 June 2015 –

June 2016

Martina

Rodie PM / PSO

Develop mechanisms for

feedback including, Focus groups, Surveys

1)focus on early years in conjunction with SAAG audit / survey

2) focus on service provision 3) Online forum

Obtain

feedback from patients to find out what

support and advice they would like

from SDSD.

A

2015-02 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 Ongoing process throughout

2015 -2016

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.

Improve patient experience

and reduce need for multiple visits

to clinic.

G

2015-03 Improve access to education and training for

Clinicians and increase clinicians competence in

managing DSD Patients

2,3,4,5 11th March 2016

PSO Lead Clinician

Symposium held, range of topics and speakers excellent. Evaluation

underway and this progress into the development of an educational strategy

Raised awareness of DSD

conditions and patients perspective

MRKH, DSD pathway and transition for

DSD

B

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2015-04

Maintain a system of collecting data to

enable reporting of information to audit service provision

for SDSD

3,4,6

April 2015 ongoing

throughout 2016

Martina Rodie

Executive group

PSO

(admin support)

The executive group agreed to continue to use

the SAAG (Scottish audit of atypical genitalia) audit system to collect data,

currently 30+ clinicians entering data onto the

system

To enable data

collection, audit and research into

DSD conditions,

with a focus on early years at present,

provide a baseline for future service

improvement and monitoring of

clinical outcomes.

R

2015-05 Ensure all stakeholders are represented within

SDSD membership and different methods of

communication with the target audience are considered

1,3,4,5 April 2015 – April 2016

Chris Driver PM

PSO

Design and development of new website under way , work progressing with

SHOW and communications teams within NSD

Regular newsletters are generated

To improve communication and

promote the work of the network.

A

2015-06 Initiate a review of resources available for DSD conditions

1,3,4 May 2015 – June 2016

PM / PSO Executive group

To develop a template to enable regular review of documents and leaflets

created by SDSD group

To ensure information and materials

available to SDSD stakeholders

is reliable and based on

R

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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

Outcome / evidence

RAGB status

current

evidence.

2015 -08 Develop transition standards for young

people with a DSD

1,2,3,4,5,6 June 2015 – June 2018

Leads to be agreed

Issue raised at SDSD symposium 2015

To develop a document to

clarify transition process for

SDSD patients.

R

2015-09 To develop formal

governance structures

3,4 April 2015 –

Jan2016

PM

Undertake an equality and

diversity assessment for SDSD Agree Communication and

engagement strategy

A

2015 -10 Complete a review of the network in

line with NSD policy

3,4 Jan 2015 – Oct 2015

Expert review

group

Review process begun Project brief and review

initiation document developed

Review plan, Risk register, stakeholder survey developed

Expert review group agreed and initial meeting completed

Review process to

ensure the network has a

chance to develop in accordance

with the maturity network

framework.

B

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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

Faisal Ahmed, Consultant Paediatric Endocrinologist, 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

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

Liz Blackman, Senior Programme Manager, NHS NSS

Margaret Kelman, Programme Manager NHS NSS

Liam Anderson, Programme Support Officer, NSS

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Appendix 2: Finance

NGICNS Financial Statement for the year 1 April 2015 to 31 March 2016

£ Notes

Total budget at 1 April 2015 5,000

Exhibitions & Conferences 1,437.40 Discovery centre Dundee

Hospitality & Catering £227.30

Including catering for SDSD network away day

Total spend:

BALANCE at 31 March 2016 £ credit

SDSD Endowment Fund

The SDSD endowment fund was set up as a research/study fund, to which members of the network can request funding for any project or meeting they are involved in as part of network activity. In Addition any payments charged for education events run by the network are paid directly into the fund.

SDSD Endowment Fund

Closing balance April 2015

£1,476.78

Closing balance March 2016

£1877.91