National Gender Identity Clinical Network for Scotland (NGICNS) Annual report 2016 to 2017 V1.0

Transcription

1 National Gender Identity Clinical Network for Scotland (NGICNS) Annual report 2016 to 2017 V1.0 Lead Clinician: Dr David Gerber Programme Manager: Aileen Ferguson 1

2 Foreword The National Gender Identity Clinical Network for Scotland (NGICNS) has now been in place for over three years. The first year of the network was spent establishing the aims and objectives and forming connections to accomplish these tasks; many of which have been achieved and some are still in progress. The Network Manager, Aileen Ferguson, has ensured that we have remained on track and I am confident that the productive activities of our collaborative efforts will continue. Gender Services have faced huge challenges in the past year with soaring referral rates particularly for younger people. As a result services have worked hard to increase capacity, which is beginning to have an impact on waiting times, although there is much still to be done. The Steering Group now has better representation for younger people as new representatives from parent and youth support groups have been recruited. Adult services, too, have faced similar challenges and there have been further increases in capacity of these services to meet these demands. The network has strengthened its grasp on the data relating to capacity and demand across Scotland and this will remain a core objective in the years to come to ensure that services are able to meet service user needs. User engagement has been a continued focus, with open events held this year in Lothian and Glasgow. The levels of engagement have been excellent and the feedback from these events will be used to drive service improvements in the years to come. Dr David Gerber NGICNS Lead Clinician 2

3 Contents Foreword... 2 Executive Summary Aim and Purpose of the Network Report against Workplan Other Work Plans for the Year Ahead Network Governance... 9 Appendix 1 - NGICNS Steering Group membership during Appendix 2 - Finance...12 Appendix 3 Progress over Reporting Period - Action Plan Appendix 3 DRAFT Action Plan Appendix 4 Communications...22 Appendix 5 Data

4 Executive Summary National Gender Identity Clinical Network for Scotland (NGICNS) will celebrate its third anniversary on 1st April The NGICNS Steering Group, which takes forward the work of the network, has worked hard in to continue to improve the gender services available for adults, children and young people across Scotland. This report provides a summary of progress by NGICNS, during the financial year 2016 to 2017, against its action plan. Notable is the work with service users who identify as non-binary; with greater clarity achieved on the position for hormones for chest reconstruction. Waiting list data reporting is much improved, and the network now has more than twelve months of data to assist the Boards with service planning. Data is a standing item at each Steering Group meeting, and has shown that demand continues to grow, particularly for the children and young people s services, despite additional resource being put in place. Endocrinology guidance was updated and circulated to all Boards. The Adult Exceptional Aesthetic Referral Protocol (AEARP) will be removed from the gender reassignment protocol, which it is hoped will make it more straightforward for patients to access certain NHS services. The network continues to work with patients, service users and stakeholder groups to understand where services are not meeting their needs, and work with our colleagues at Scottish Government on issues such as fertility preservation, the Gender Recognition Act, and gaps in service. The network continues to make progress on communication materials and on the network website We have a great deal of work to take forward in 17-18, and the draft workplan outlining some of our priorities for the coming year is noted in Appendix Aim and Purpose of the Network A person s internal, personal sense and experience of being male, female or neither is referred to as their gender identity. Transgender 1 people experience a gender identity that is not the same as their assigned gender at birth. Therefore, an individual may choose to live their life as a different gender and may alter their body hormonally and / or surgically so that they can bring their physical appearance more into alignment with their gender identity. Other people may feel that binary descriptions of gender; male or female do not reflect their gender identity. Scotland s transgender population requires equitable access to planned gender identity services and gender reassignment treatment and surgery. Scotland s gender reassignment National Clinical Network was established in support of the Gender Reassignment Protocol (GRP) for Scotland 2, in order to work towards providing equal access to high quality gender services across Scotland. With the primary aim of supporting people undergoing their medical transition, NGICNS works with Gender Identity Clinics (GICs), gender reassignment surgical (GRS) providers, primary care, patient and third sector representation to achieve timely, coordinated, service provision and equitable access to planned gender identity clinical services across Scotland. 1 The term transgender is an umbrella term of a list of more specific identity terms such as transsexual people, trans men, trans women, gender queer people, transvestite people, cross-dressing people and intersex people. 2 The Scottish Government, Gender Reassignment Protocol, July 2012, accessed , 4

5 2. Report against Workplan NGICNS continues to work closely with a wide range of professionals, other networks, service users, parents, carers and third sector representatives, and we are grateful to all these busy individuals for working with us to achieve the aims of the network in the last twelve months. Substantial progress, detailed below, has been made against the NGICNS action plan, which focuses on healthcare that is person-centred, safe, effective, efficient, equitable and timely, in line with the Healthcare Quality Strategy 3. A summary of work undertaken in is noted in Appendix 2, and a draft plan for is noted in Appendix 3. Working Group to consider the healthcare provision for people identifying as Non-Binary (Action Plan Objective 1) NGICNS was asked to consider the specific needs of non-binary service users, who may not feel confident enough to be open about identifying as non-binary when accessing healthcare, to consider ways to enable a more person-centred approach to health care. Two meetings were held in 2016; in August and September, with a further meeting scheduled for April The initial meeting was an information-gathering exercise. As a direct result of service user feedback, actions completed include liaison with Pennine Acute Trust, the surgical provider for chest reconstruction, to ensure their information literature is inclusive of non-binary patients; as a result, their information literature was updated (a copy is available on the NGICNS website). Information from the Nuffield in Brighton regarding the provision of surgery was reviewed and included on the NGICNS website. The criteria for approval for surgery has been reviewed by NSD (who commission on behalf of NHS Boards) and it has been clarified that non-binary status should not be a barrier to accessing surgery, and there is no requirement for patients to be on hormones as a pre-requisite for chest surgery. More information on the nature of GIC appointments has been written into the information leaflets, (see objective 7). The Scottish Transgender Alliance report on service users experience of gender clinics will inform future work of the group. Waiting List Data Collection and Management (Action Plan Objective 2) Waiting list data collection and reporting has improved, with nine months of data submitted to the February 17 meeting of the Steering Group. There is still work to be done on improving and quality assuring the data, and a data SLWG is being scheduled, but good progress has been made against this objective, which measures waiting times at the adult and young people s gender clinics. (See Appendix 5 for some summary data). In addition, NGICNS has commissioned, via GG&C a healthcare needs assessment carried out with ScotPHN (the Scottish Public Health Network), that will inform planning of future capacity in NHSGGC gender services. It will take forward the following actions: Investigate epidemiological evidence re. gender dysphoria, including the changing views of gender amongst young people Attempt to make future projections of demand for services in Scotland 3 The Scottish Government, The Healthcare Quality Strategy for the NHS in Scotland, May 2010, accessed

6 Describe models of care for gender services Explore the presence of inequalities in access to services Consider national perspective in terms of service provision in collaboration with ScotPHN. Endocrinology Guidelines (Action Plan Objective 3) A meeting was set up and the adult endocrinology guidelines revised and circulated. As a next step, each NHS Board was asked to supply names of consultants in their local area who could act as an expert point of contact for whom training could be provided, who could take a lead in treating gender patients and answering queries. Unfortunately, not all Boards were able to assist with this. We will continue to pursue this by actively encouraging education and participation with our goal to provide equitable services for all service users in Scotland. With regard to guidelines for young people; the Network agreed to review the new guidelines which became available from England in December, and take a view on whether these could or should be utilised. A meeting is due to take place in Spring 2017, after which the way forward will be clearer. Equal Access to Services (Action Plan Objective 4) Service updates remain a standing item on the Steering Group agenda. We were pleased to welcome Stephen Sheach as representative of the Out of Area boards to our steering group in 2016, and received updates at each meeting from all the Boards where a gender service exists. Issues such as workforce and succession planning within the GICs were raised and are being addressed, as well the lack of provision of some services in some areas, such as hair removal, the provision of wigs, and some surgeries provided under the Adult Exceptional Aesthetic Referral Protocol (AEARP). On behalf of service users, NHS gender staff and other stakeholders, the network worked with colleagues at Scottish Government and gained assurance that the Adult Exceptional Aesthetic Referral Protocol (AEARP) will be removed from the gender reassignment protocol, and an announcement to that effect was made by Scottish Government on 29th March This will streamline the patient pathway and, it is hoped, will make it more straightforward for patients to access certain NHS services not contained in the Protocol. Work with Scottish Government continues to resolve difficulties around access to some services, as a review and update of some of the government documentation would help guide Boards in their service delivery. Service User Input (Action Plan Objective 5) NGICNS continues to engage with service users to try and ensure that their concerns about services are heard and addressed. This is done in a variety of ways; through the NGICNS website, through advocacy and patient representatives on our Steering Group (including Scottish Transgender Alliance, LGBT Youth, LGBT Health, NUS, TransparenTsees), and through a series of engagement events with partner organisations, such as the Sandyford Waiting list event, the Scottish Transgender Alliance Health Conference, or Lothian s Q&A session about Chalmers Street services. The Network also holds an annual open AGM, which allows service users the opportunity to ask questions of the Steering Group. We were delighted that Mrs Allison Ewing of TransparenTsees was nominated for, and won, the NSS Volunteer Award at the Excellence Awards 2016 for her tireless work in establishing support groups in Glasgow, Edinburgh and Tayside for parents and families of transgender people across Scotland. NGICNS also received a positive mention at the EPATH Conference in Belgrade on 6th April, in relation to our positive engagement with the trans community. 6

7 NGICNS Website (Action Plan Objective 6) NGICNS website continues to be refined, with many new resources added in , such as GMC Guidance, additional counselling and support groups, and a much greater degree of detail about GS surgery. Please see for more details. We have been highlighting the ever-growing For Professionals resource pages with GPs at each event we have attended, which has been well received by Primary Care colleagues. Information Leaflets (Action Plan Objective 7) Work continues on two information leaflets, one which is specific to children and young people s services, the other around provision of services to adults. The leaflets are nearing completion and will be peer-reviewed by service users. In addition, NGICNS is working with Sandyford to deliver some unique artwork created by service users (illustrated on the right) which it is hoped can be used to illustrate the leaflets, and make the Sandyford clinic feel more inclusive and vibrant. NHS Health Scotland has agreed to assist with a plain English review of the finalised text of the leaflets. Referral Processes (Action Plan Objective 8) The criteria for surgical interventions were clarified in 16-17, with a meeting held with Miss Dabritz, who carries out chest reconstruction under contract for Scottish patients, and the Scottish referring clinicians. This has led to uniformity of approach by all bodies who approve GRS. The programme manager, with NSD colleagues responsible for commissioning surgery, met with the surgical teams as part of the annual review of services. A number of actions came out of these meetings with the surgical providers (in Manchester, London and Brighton); these have, and are, being taken forward by the programme manager and NSD colleagues One very positive service-development action that was agreed was that the Chest Reconstruction Surgeon in Manchester will hold a one day clinic in Scotland on a monthly basis, so Scotland-based patients will not have to travel to Manchester for assessment. Education Strategy (Action Plan Objective 9) In the Network developed links with NHS Education and contributed to a NES CPD event for 100 GPs in Glasgow. GPs completed a survey to advise if they had any information or education needs around their provision of service for Transgender patients. The results indicated that there was much more that could be done to help GPs, including additional information and signposting to training resources. We repeated the exercise, with a stall at the South East Scotland NES GP CPD event in Musselburgh in November 2016, which provided another opportunity for NGICNS to engage with approximately 80 primary care colleagues, and hear about their learning needs with regard to care for gender patients. This feedback will, in turn, inform the educational strategy, and help set the priorities for action. Network clinicians once again attained professional affiliation with the British Association of Gender Identity Specialists (BAGIS) which has enabled UK-wide networking with gender professionals who have 7

8 common interests in the management of transgender patients. The education strategy, however, is not yet complete and has not been submitted to the Steering Group. It will be discussed early in 2017/ Other Work 3.1 Fertility Preservation The network continues to work with colleagues at Scottish Government with regard to the details of fertility preservation options available to service users; with network members attending the Government s Fertility Preservation Sub Group, and raising issues as required. 3.2 Communications (See also Appendix 4) The Chair and Lead Clinician for the network provided a lively and informative interview to Pink Saltire regarding services for gender patients in Scotland In addition, NGICNS has continued to attend events with its suite of information resources, to raise awareness of the network amongst NHS staff and service users across Scotland. 3.3 Gender Recognition Act The network was pleased to welcome colleagues from Scottish Government Justice department to its steering group in , and has been facilitating contact between senior NSS staff (with regard to NHS equalities policies and national IT systems), and other NHS staff (for example clinicians from other related networks) and Scottish Government, to assist in their scoping the implications of changes to the Gender Recognition Act. 4. Plans for the Year Ahead As part of the ongoing initiative to gain feedback from our service users, we will again hold a public NGICNS Annual Meeting towards the end of 2017, to make available another opportunity for service users to give their views on how services should develop, to ask questions, and to learn about the work of the network. An Education Strategy is being developed, to help to raise awareness about gender reassignment and the needs of the Transgender community within the NHS in Scotland. This will include, for example, targeted activities to provide education about gender issues in further education establishments and to GPs. The results of the survey of GPs at the NES CPD event in May 2016 have been analysed and these data will help inform the GP element of an education strategy, and will also help determine the information made available to professionals via the NGICNS website. The Network is delighted to have been asked to present at a NES GP Cradle to Grave CPD even in Aberdeen in March 2017 on adult services, and at the NES Glasgow GP Cradle to Grave event in May 2017, focussing on services for young people. It is anticipated that the events in Glasgow and Aberdeen will provide further useful data on information requirements and learning needs of primary care colleagues. The NGICNS Website Sub-group has continued to add to and improve content; however, there is a wealth of information from NHS Health still to be reviewed. The aim is not to replicate what other organisations already do well, rather, to retain a core NHS focus for the website information and to direct service users and health professionals to any other providers of information and support that they may require. 8

9 The non-binary sub-group will take as its priority for the first meeting in 17-18, scheduled for April, the Scottish Transgender Alliance s three reports based on the UK-wide non-binary survey we ran between July and September Colleagues from the Scottish Government are now on the NGICNS Steering Group, with representation from the Family & Property Law Team, which will enable us to assist with a review of legislation around the Equalities Act, and improve equity of access and quality of NHS services for Transgender people across Scotland. We are delighted to have their input to the network. 5. Network Governance Having been in place since 2014, NGICNS is due for a review against its designation objectives in A review initiation document has been drafted and members of the External Review group are be ing identified. It is anticipated that the review report will be received by NSSC within the financial year. The network submits mid-year and annual reports, and these are available on request and via the NGICNS network website. 9

10 Appendix 1 - NGICNS Steering Group Members during Catriona Renfrew Chair; NHS Greater Glasgow & Clyde Director Corporate Planning and Policy Dr David Gerber Lead Clinician; NHS Greater Glasgow & Clyde Clinical Director Liz Blackman National Services Scotland NGICNS Senior Programme Manager Dr Susan Brechin NHS Grampian Consultant in Sexual Health Deborah Dunn NHS National Services Scotland Senior Programme Manager Allison Ewing TransparenTsees Parent Group Representative Dr Marie Freel Queen Elizabeth University Hospital Consultant Endocrinologist Isobel Frize NHS Lanarkshire Planning Manager Dr Linda Graham NHS Tayside Consultant Clinical Psychologist Dr Sarah Kennedy NHS Lothian Lead Clinician, Gender Identity Clinics, NHS Lothian Brandi Lee Lough-Dennell LGBT Youth Assistant Policy Director Dr Duncan McCormick NHS Lothian Consultant in Public Health Medicine Dr Gordon MacKenna Katrina Mitchell NHS Highland LGBT Health and Wellbeing Lead Clinician, Gender Identity Clinics, NHS Highland Development Worker (Trans Support Programme) James Morton Scottish Transgender Alliance Scottish Transgender Alliance Manager Pam Nicholson NHS Lothian Service Manager David Parker NHS Lothian Community Mental Health Nurse Stephen Sheach NHS Ayrshire & Arran (and Out of Area Board representative) Planning Manager Leo Silbert National Union of Students Scotland Elected Trans Representative Simon Stockwell Scottish Government Head of Family & Property Law Justice James Thom National Services Scotland Data Manager Consultant Child and Adolescent Dr Gordon Wilkinson NHS Greater Glasgow and Clyde Psychiatrist 10

11 NGICNS Secretariat during Aileen Ferguson NHS National Services Scotland NGICNS Programme Manager Mary Adams NHS National Services Scotland NGICNS Programme Support Officer We are grateful to all members of our steering group for their time and expertise, in taking forward the work of the network. 11

12 Appendix 2 - Finance The NGICNS Financial Statement for is detailed below. In summary, the network remained within budget, with the majority of spend on hire of rooms, where public sector premises were unavailable, and on a project with facilitated sessions where service users produce illustrations, which will be used in the information leaflets. No balance is carried forward and the budget for remains 5,000. Notes Total budget at 1 April ,000 Hire of Rooms for Meetings 1,083 Including Steering Groups where local NHS premises were not available, and pubic meetings Hospitality & Catering 48 CPD 360 BAGIS and attendance at Next steps for transgender equality, 21/09/2016 Travel for non-nhs staff 150 Leaflet artwork 1,800 Eight facilitated sessions, with Sandyford, producing service user artwork, which it is hoped will be used in the information leaflets VAT 140 Total spend: 3,582 BALANCE at 31 March ,418 12

13 Appendix 3 Progress over Reporting Period - Action Plan NGICNS Action Plan Dimensions of healthcare quality Providing care that is responsive to individual personal preferences, needs and values and assuring that patient values guide all 1 Person Centred 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 6 Timely Reducing waits and sometimes harmful delays for both those who receive care and those who give care RAG status RED (R) AMBER (A) GREEN (G) BLUE (B) Description The network is unlikely to achieve the objective/standard within the agreed timescale There is a risk that the network will not achieve the objective/standard within the agreed timescale, however progress has been made The network is on track to achieve the objective/standard within the agreed timescale The network has been successful in achieving the network objective/standard to plan No SMART Objective Linked Dimensions of Quality Planned start / end dates Detailed plan / Available owner Description of progress towards meeting objective as at 31/03/2017 Anticipated Outcome / Evidence RAGB Status 16-17/01 Convene a working group to make recommendations on improving services for nonbinary people, with signed off terms of reference and action plan for the group April 2016 to March 2017 A Non-Binary SLWG was set up in 2016, two meetings have taken place to date, with another meeting scheduled for April Outcome: Some specific needs of non-binary service users have been highlighted and changes are being put in place to ensure services are more inclusive and sit B 13

14 No SMART Objective Linked Dimensions of Quality Planned start / end dates Detailed plan / Available owner Description of progress towards meeting objective as at 31/03/2017 Anticipated Outcome / Evidence RAGB Status 16-17/ /03 Collect, monitor and evaluate data collected, to aid national service planning Amend endocrinology guidelines for adults and review guidance for paediatric services via liaison with other YP GID services 3, 4, 5, 6 April 2016 to March 2017 April 2016 to March 2017 Aileen Ferguson 2017 for purpose Evidence: Working group met within timeframe, had clear terms of reference signed off by Clinical Lead and an action plan to take forward the priorities of the group There is now clarity on the immediate priorities for data collection Quarterly data is being presented to the Steering Group and queries fed back to improve data integrity. A SLWG on data is being scheduled and nine months of data was presented to the February Steering Group Guidelines have been updated and published on the NGICNS website, and training has been offered. YP Services under review England and Wales have now reported on their way forward, GW Outcome: Data was available for benchmarking and monitoring trends; demonstrating supply against demand, and used in service and workforce planning. Evidence: Data was presented to the Steering Group. Outcome: Up to date endocrinology information is supplied to the NHS in Scotland to ensure good quality patient care Evidence: Guidelines were updated and disseminated B B 14

15 No SMART Objective Linked Dimensions of Quality Planned start / end dates Detailed plan / Available owner Description of progress towards meeting objective as at 31/03/2017 Anticipated Outcome / Evidence RAGB Status to meet with colleagues and report back to May 17 SGp /04 Develop plans to ensure equal access to Gender services for service users irrespective of home Health Board 5, 6 April 16 to March 17 Access to particular services in some areas remains an issue despite repeated efforts, however, work continues and this is a standing item at each steering group, with updates on areas of concern Outcome: Equality of access to gender services Evidence: Access to services remains a specific agenda item for the Steering Group B 16-17/ /06 Work with service user representatives to continue to build service user involvement in the NGICNS Network development, through their involvement in working groups, in the Steering group, and through NGICNS involvement at service user events Implemented suggested changes to the NGICNS Web pages to improve communication methods, seek feedback from service users and incorporate regular reviews of 1 5 April 16 to March 17 April 16 to March The membership of the steering group has been widened, and NGICNS continues to engage with service users directly in as many different ways as possible. In 2016, two service user engagement days took place, with further dates scheduled for 2017 The web pages are being reviewed regularly and changes being made after each review Outcome: Patient-centred care Evidence: NGICNS input to planning, and presence at service users GIC Q&A sessions, Service user representation in NGICNS working groups and meetings Outcome: Information for professionals will contribute to good quality services, and service users will be signposted to relevant, up to date information B B

16 No SMART Objective Linked Dimensions of Quality Planned start / end dates Detailed plan / Available owner Description of progress towards meeting objective as at 31/03/2017 Anticipated Outcome / Evidence RAGB Status pages This work is ongoing. Evidence: Web pages were reviewed and updated in a structured programme of work 16-17/07 Improve information resources for service users two patient leaflets to be available in April 16 to March 17 Working groups continue and drafts are being progressed; these will be delivered in It is hoped that illustrations by service users can be incorporated. Outcome: service users will be signposted to relevant, up to date information Evidence: Patient leaflets will be available via GICs, NGICNS webpages and partner organisations A 16-17/08 Clarify and disseminate the referral process for surgery, including the patient pathways for FFS. Ensure there is clarity on the role of all stakeholders in referring, and in approving referrals, for surgery 4 April 16 to March 17 There has been progress on surgical referrals and removal of the AEARP from the GRP Outcome: clear referral processes minimise additional delays to accessing services Evidence: Referral processes published on NGICNS website B 16-17/09 Develop, sign off and implement an education strategy for NGICNS 3,5 April 16 to March 17 Draft strategy will now go to the August 2017 Steering Group Outcome: high quality education will raise awareness and address gaps in knowledge, to provide better quality advice and services for trans patients R 16

17 No SMART Objective Linked Dimensions of Quality Planned start / end dates Detailed plan / Available owner Description of progress towards meeting objective as at 31/03/2017 Anticipated Outcome / Evidence RAGB Status Evidence: Strategy to be signed off by Steering group with action plan for implementation 17

18 Appendix 3 DRAFT Action Plan NGICNS DRAFT Action Plan Dimensions of healthcare quality (DHC) Providing care that is responsive to individual personal preferences, needs and values and assuring that patient values guide all 1 Person Centred 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 6 Timely Reducing waits and sometimes harmful delays for both those who receive care and those who give care RAG status RED (R) AMBER (A) GREEN (G) BLUE (B) Description The network is unlikely to achieve the objective/standard within the agreed timescale There is a risk that the network will not achieve the objective/standard within the agreed timescale, however progress has been made The network is on track to achieve the objective/standard within the agreed timescale The network has been successful in achieving the network objective/standard to plan No SMART Objective Linked Dimensions of Quality Planned start / end dates Detailed plan / Available owner Description of progress towards meeting objective as at 31/03/2018 Anticipated Outcome RAGB Status 18

19 17-18/01 Sign off and implement an education strategy for NGICNS 3,5 August 18 Aileen Ferguson Educational initiatives will be captured in a strategy. Once this is implemented, NHS staff across Scotland will be signposted to high quality education, to raise awareness and address gaps in knowledge, to provide better quality advice and services for trans patients Strategy to be signed off by the Steering group with action plan for implementation 17-18/01a Scope out the potential for a modular e-learning package on gender dysphoria for NHS Scotland staff, setting out timeframe for progress 3, 5, July 17 to March 18 Aileen Ferguson, David Gerber NHS staff across Scotland will have access to high quality education, to raise awareness, address gaps in knowledge as identified via CPD surveys, to provide better quality advice and services for trans patients E-learning package to be planned, written and launched on a suitable platform 17-18/02 Sign off and implement an quality strategy for NGICNS 2, 3 Jan - Mar 18 Aileen Ferguson Quality improvement measures will be captured in a strategy, which will put quality improvement at the heart of the work of the network Strategy to be signed off by the Steering group with action plan for implementation 19

20 17-18/03 Carry out a network review, reporting within , 3 April 17 to March 18 External Review Group Review will summarise and highlight the work of the network, and will make recommendation on the future of the network Report to be signed off by NSSC and NPPPRG with action plan for implementation 17-18/04 Continue to work to ensure waiting times data is correct and as required by the network, improving (and potentially widening the data collected, if this is agreed by the Steering Group) 3, 5, 6 April 17 to March 18 Data Sub Group Accurate waiting times data helps inform the services of how investment in workforce is sufficient to meet increasing demand Data presented to each Steering Group and developed as required 17-18/05 Work with service user representatives to continue to build service user involvement in the NGICNS Network development, through their involvement in working groups, in the Steering group, and through NGICNS involvement at service user events 1 April 17 to March 18 Aileen Ferguson / NGICNS Steering Group Input from service users remains integral to how the work of the network is planned and delivered, ensuring that the network is responsive to gaps and issued as identified by service users, and supports the provision of genuine, person-centred care. NGICNS input to planning, and presence at service users GIC Q&A sessions, Service user representation in NGICNS working groups and meetings 20

21 17-18/06 Clarify and disseminate the referral process for surgery, including the patient pathways for FFS. Ensure there is clarity on the role of all stakeholders in referring, and in approving referrals, for surgery 4 April 17 to March 18 Aileen Ferguson Referral processes will be clear, disseminated and published on NGICNS website, ensuring that patients and referring clinicians understand the pathways, cutting unnecessary delays 17-18/07 Continue to work towards equal access to Gender services for service users irrespective of home NHS Board, taking into account the results of the Needs Assessment commissioned in 2016, when available 5, 6 April to June 17 Steering Group NGICNS will support equity of service provision for gender patients across Scotland Access to services will remain a specific agenda item for the Steering Group 17-18/08 Scope and carry out a patient satisfaction survey, with results informing the NGICNS workplan 1, 3 April to June 17 Aileen Ferguson, STA, Survey to inform the Steering Group and NSS on Scottish patients satisfaction with commissioned surgical services, to identify issues and improve patient care Report to Steering Group 17-18/9 Scope and carry out an audit against GIC post surgical follow ups 1, 3 Jan to March 18 Aileen Ferguson, Steering Group Audit to ensure that the six month follow-up is taking place in line with WPATH and the GRP, to support the provision of quality GIC services to Scottish patients Report to Steering Group 21

22 Appendix 4 Communications In 2016 the NGICNS Chair and Clinical Lead gave an interview to Oceana Maund for Pink Saltire, re. Gender service provision. The full video can be seen here: Work continued on education, with further engagement events with GPs, facilitated by our colleagues at NHS Education. Dr Kennedy spoke to GPs and Pharmacists in Grampian in March 2017 about the provision of gender services. In Spring 2017, the network also supported the Sandyford centre, in a project where young service users created unique artwork to reflect their experiences. It is anticipated the outputs will be used in the leaflet the network is producing re. children and young people s services, and within the gender clinic at Sandyford. 22

23 Appendix 5 Data Below is a summary of twelve months of waiting times data from GICs across Scotland. Total no. of patients on waiting list at last date of relevant quarter (April 16 Mar 17) These data demonstrate an average downward trend in waiting times in the previous twelve months for the two biggest services; this is due to significant investment in additional workforce at the centres. There is, however, a sustained increasing demand on the services, which means that despite increased staffing, in some cases waiting times continue to rise. It should be noted, however, that as patients can self-refer to the Glasgow service, a small number of patients may be included in both the Edinburgh and Glasgow data. These data continue to be monitored. 23

24 Average waiting times in days over four quarters (April 16 Mar 17) These data demonstrate, in days, the time service users have spent waiting for a first appointment. It should be noted that Inverness data reflects a very small number of patients (14). 24

25 Number of patients seen in previous quarter (Jan 17 Mar 17) These data demonstrate the number of patients seen in the most recent quarter of data, by Board of residence and GIC clinic. 25

26 Percentage of patients by regional NHS Board and by GIC clinic (Jan 17 Mar 17) These data show patients for each GIC, split by their residential NHS Board. 26

27 Percentage of patients attending GICs, split by NHS Board of residence (April 16 Mar 17) These data detail the total number of patients who attend gender clinics, by their NHS Board of residence. 27

28 Percentage of patients attending GICs split by NHS Board of residence, as compared to percentage of all Scottish patients by NHS Board (April 16 Mar 17) These data compare the population of Scottish NHS Boards (e.g. Lothian has 16.5% of Scotland s patients, and GG&C have 21.4%), as compared to the patients attending GICs by NHS Board (23.6% of all GIC patients have a Lothian postcode, and 24.7% of patients have a GG&C postcode). 28