National Gender Identity Clinical Network for Scotland. Liam Andersonn Thursday 9th November 12.30pm 16.00pm

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1 ITEM 2a Minutes v1.0 Gyle Square 1 South Gyle Crescent Edinburgh EH12 9EB Telephone Fax Subject: Author: Date: National Gender Identity Clinical Network for Scotland (NGICNS) Steering Group Meeting Liam Andersonn Thursday 9th November 12.30pm 16.00pm Venue: Board Room 2, Gyle Square, 1 South Gyle Crescent, Edinburgh, EH12 9EB File Location: K:\07 Health Support Ser\Specialist & Screening\NMCNs & NMDNs\Networks\NGICNS\Steering Group\Mins\ Present: Catriona Renfrew, Director of Corporate Planning and Policy NHS GG& &C (Chair) David Gerber, Clinical Director, NHS GG&C (Lead clinician) Deborah Dunn, Programme Manager, Aileen Ferguson, Programme Manager, Catriona Johnson, Programme Director, James Morton, Manager, Scottish Transgender Alliance Liam Anderson, Programme Support Officer, NHS National Services Scotland Gordon Wilkinson, Consultantt Child and Adolescent Psychiatrist, NHS GG&C Isobel Frize, Service Planner, NHS Lanarkshire Sarah Kennedy, Lead Clinician, Gender Identity Clinic, NHS Lothian George Burrows, Community Development Worker, LGBT Health and Wellbeing Allison Ewing, Representativee from Mermaids and Transparentsees Apologies: Liz Blackman, Senior Programme Manager, Linda Graham, Clinical Psychologist, NHS Tayside Gordon MacKenna, Lead Clinician, Gender Identity Clinics, NHS Highland Pam Nicholson, Service Manager, NHS Lothian (Has left NGICNS) Marie Freel, Consultant Endocrinologist, Queen Eizabeth University Hospital

2 1. Welcome & Apologies Catriona Renfrew welcomed everyone to the meeting and invited members to introduce themselves round the table. The Steering Group extended a warm welcome to Aileen Ferguson, in attendance as the new Programme Manager for NGICNS. Allison Ewing was also welcomed as a representative from Mermaids/Transparentsees. Apologies were noted as above. A query was raised around representation from LGBT Youth Scotland and it was advised that Pam Nicolson was no longer part of the Steering Group. A replacement is to be invited. 2. Notes & Actions from the Last Steering Group Meeting The notes and actions from the Steering Group held on 18th August 2015 were accepted as an accurate representation of the meeting. Once the minutes are updated to represent a final copy, they will be posted onto the NGICNS website. Catriona Renfrew advised thatt the actions from the previous meeting had been collated on an action note and required review to provide an update to the group. 3. National Waiting List & Capacity David Gerber reported that there was currently no data from individual services. Catriona Johnson advised that a new Data Manager had been appointed and would assume post on 16th November The group noted the need to progress this project as soon as possible. Individual CHI numbers were raised as a point of discussion as this is a problem in tracking patients through services. We need to be able to change gender but retain the same CHI number to assess patient pathways and experiences. Attention was drawn to the national work under way to change the way CHI numbers were issued, so that they were not gender specific. Catriona Johnson advised that there was work ongoing with the National Services Directorate (NSD), acknowledging a link with the screening programmes. This highlighted the need to put together basic data asap and for detailed review at the next meeting. 4. Capacity Issues with Endocrinology in GG&C David Gerber noted capacity issues in Endocrinology with Greater Glasgow and Clyde. 5. AEARP Report Network submission has been made, Margaret Duncan from the Scottish Government had advised that she would ensuree that a revised version of the protocol would be passed by the end of November Action: Programme Support Officer Action: David Gerber and Catrionaa Renfrew to follow up Action: Catriona Renfrew

3 Draft Board letter on hair removal, wigs and fertility Further amendments proposed. Catriona Renfrew will amend letter accordingly and issue to Boards. Action: Catriona Renfrew 6. Group Discussion Young person s service-capacity and demand issues David Gerber reported to the group that referral figures had doubled in the last year, also reflected in the figures from the Tavistock Clinic in England. Discussion was held around the development and expansion of the service at the Sandyford Clinic, with the suggestion that an additional two sessions of a Clinical Psychologist for young people might be provided. Gordon Wilkinson advised that recruiting more clinical psychologists would be beneficial; two or three people could manage demand in order to balance the service provision. Action: Catrionaa Renfrew to follow up Reduction in age surgery from 18 to 16 James Morton noted that the WPATH statistics recommended that surgery take place in line with the average age of majority in the country. The group was in favour of year olds being assessed on an individual basis, meaning that they could start hormone treatment at the age of 16, where appropriate, which in practice means that they could have had 1 year of hormones by the time of referral. Gordon Wilkinson queried the differences in approach for younger gender patients who had previously been on puberty blockers. Catriona Renfrew advised thatt the current priority was to get the service to a point of balanced capacity. There was no proposal to set up a separate Lothian service, as there were advantages to having the service in one place, and if the capacity of Glasgow were increased then outreach clinics could be considered. George Burrows queried whether year olds may present on an adult waiting list. Sarah Kennedy confirmed that this was in effect the case, and it was confirmed that for year olds parental consent for treatment was not required. Catriona Renfrew noted that once capacity was right, the transition to adult services would be smoother. Mermaids would be interested in giving talks to medical students to try and promote gaining a patients perspective, in order that the general knowledge of health service workers is better in the mainstream services. Sarah Kennedy noted that Mermaids could be included in the psychiatry summer school curriculum.

4 Action: Sarah Kennedy and Allison Ewing. 7. NGICNS Education Event - Update Planned for Glasgow at present for 2016, a suggestion was made that the education event should focus on work with young people as there was a degree of anxiety amongst GPs. The Teacher building was agreed as a venue. It was suggested that a speaker from Mermaids be included on the programme. David Gerber to finalise guest list and programme. Action: David Gerber, Aileen Ferguson 8. NGICNS Service User Engagement - Update Two events have taken place; one in Tayside and the other Highland. NHS Tayside Event evening of Tuesday 25 th August 2015 Actions have been circulated. NHS Highland Event evening of Thursday 24 th September 2015 Actions have been circulated. Glasgow Waiting List Event December 2015 NGICNS is supporting the planning of this event which is scheduled for 15 December 2015, to be held at the CCA on Sauchiehall Street. 9. GRS National Statistics Deborah Dunn shared the Gender Reassignment Surgery statistics with the Group. There had been a significant increase in Male to Female referrals, with funding for 15 cases. The group noted the inclusion of young people in the NSS treatment pathway. Deborah Dunn reported 15 cases had been cleared for surgery however, 13 outstanding referrals were still awaiting an appointment. One particular case was raised for discussion as surgery had been denied; agreement was made with the Group that more flexibility should be afforded in such cases on an ad hoc basis. It was agreed that a suitable form of words would be found and incorporated into the treatment pathway document. Action: Deborah Dunn, James Morton Allison Ewing identified that this was a complex issue, suggesting that many young people were putting their life on hold before they were granted their surgery. Catriona Renfrew advised thatt the service provision should be more robustly established before trying to enhance it. It was noted that there was potential from Miss Walls forming a Glasgow clinic for chest reconstruction as she was currently working with 3 Trainees. James Morton reported anxiety in the Grampian area about attending the clinic, citing possible inconsistencies in referrals. Sarah Kennedy advised that she had rolled out a protocol for Grampian so theree should not now be any misunderstanding about referrals.

5 Action: James Morton and Sarah Kennedy 10. Business Analysis/Dataa Catriona Johnson advised the group that a business analyst; Brian McConnell, will start on 16 th November 2015 and this would be his first major project. A proposal had already been developed and approved for this piece work. 11. Complaints Procedure It was noted that NGICNS sometimes receives complaints via the generic address and website. Catriona Johnson suggested that a robust process should be implemented to manage these, ensuring that the network makes good use of limited resource and follows the NHS Scotland complaints process when needed. Catriona Renfrew advised thatt she was very keen that complaints weree managed from within the network. It was agreed between Catriona Johnson and Catriona Renfrew that if and when a complaint should be submitted to NGICNS it would be dealt with specifically between Catriona Johnson and the Chair. 12. Website/Marketing- Update Liam Anderson advised that there was time set aside in December 2015 to update the website. 13. NGICNS Management Aileen Ferguson will formally take up post on 16 th November Any Other Business It was raised after the Highland Engagement Event that there was a lack of a gender information provision for those with a learning disability. It was agreed that more clinical information (in plain English) should be made available for those with learning difficulties. Action: David Gerber Update from G Wilkinson Gordon Wilkinson advised that he was in the early stages of arranging a study day on children and adolescents with The Association for Child and Adolescent Mental Health in Glasgow in June It was agreed that it would be beneficial for the network to be a part of the event. Action: Gordon Wilkinson Membership was briefly raised. It was queried if there was a representative from LGBT Youth Scotland who may join the group. Action: James Morton

6 15. Date & Venue of Next Meeting The next Steering Group meeting will be held in February Action: Liam Anderson to canvas for location and dates