2016-11-10
National Services Division
Minutes / Gyle Square1 South Gyle Crescent
Edinburgh EH12 9EB
Telephone 0131 275 6575
Fax 0131 275 7614
/
National Gender Identity Clinical Network for Scotland (NGICNS)
Steering Group
Tuesday 30th August 2016 from2.30pm to 4.15pm
Venue: The Epilepsy Centre, Quarriers, Govan, Glasgow.
Present:
Catriona Renfrew, Head of Planning, NHS Greater Glasgow & Clyde(Chair)
Mary Adams, Programme Support Officer, National Services Division (minutes)
Liz Blackman, Senior Programme Manager, National Services Division
Tracy Davies, Clinical Psychologist, NHS Lothian
DeborahDunn, Commissioning Programme Manager, NSD
Allison Ewing, Representative from Mermaids and TransparenTsees
Aileen Ferguson, Programme Manager, National Services Division
David Gerber, NGICNS Lead Clinician, NHS Greater Glasgow & Clyde
Catriona Johnson, Programme Associate Director, National Services Division
Claire Lawrie, IMS Programme manager, National Services Division
Katrina Mitchell, LGBT Health & Wellbeing
James Morton, Manager, Scottish Transgender Alliance
Gordon MacKenna, Lead Clinician, Gender Identity Clinics, NHS Highland
David Parker, Community Mental Health Nurse, Chalmers Street, NHS Lothian
Stephen Sheach, Planning Manager, NHS Ayrshire & Arran
Simon Stockwell, Scot Government, Head of Family & Property Law, Justice Department
Gordon Wilkinson, Consultant Child & Adolescent Psychiatrist, NHS GG&C
Apologies:
Susan Brechin, Consultant in Sexual Health, NHS Grampian
Marie Freel, Consultant Endocrinologist, Queen Elizabeth University Hospital
Brandi Lee Lough Dennell, LGBT Youth Scotland
Daniel Smith, Professor of Psychiatry, University of Glasgow
Sarah Kennedy, Lead Clinician, Gender Identity Clinic, NHS Lothian
Linda Graham, Clinical Psychologist, NHS Tayside
James Thom, Data Manager, NHS National Services Division
1.Annual Review Meeting
Mrs Catriona Johnson introduced herself as representative of National Services Divisionas Commissioners of the Network and that in turn Mrs Liz Blackman was deputising for Mrs Johnson in her role as head of the National Network Management Service (NNMS). Mrs Johnson explained that the annual reviewof the Network was being undertaken as part of formal governance and performance management arrangements within national commissioning policy.It was noted that the Service Level Agreement was due for renewal in April 2017.
Mrs Blackman explained that she would attend the next NGICNS Steering Group meeting to discuss details of the formal review of the Network which is due in 2017. The draft 16-17 workplan was endorsed.
- Annual Report:
Mrs Johnson thanked James Morton for nominating NGICNS within category of Public Body of the Year within the 2016 LGBT awards.
b.Service development:
Mrs Johnson noted that work was in progress within the National Specialist Service to address concerns that had been raised through NGICNS by service users in relation to access to Gender Reassignment services. A meeting was scheduled with key stakeholders for October.
c.Education:
Mrs Johnson noted that in the past year the network had focused on delivering education to GPs and asked what was planned for those delivering the specialist service. Dr Gerber explained that education for GPs had been identified as a priority and that the Network was currently reviewing the Endocrinology Guidelines, based on feedback from health boards. These were expected to be finalised in 2017.
d.Information Gathering:
Data collection was an ongoing issue for the network and further validation work was required on data submitted by clinics on waiting times. It was agreed that Claire Lawrie, Catriona Renfrew, Aileen Ferguson, and staff from Sandyford would meet separately to discuss this area moving forward.
Action: ClaireLawrie, Catriona Renfrew, Aileen Ferguson, and representatives from Sandyford
e.Referral Process:
During the AGM a service user had shared their personal experience and concernsin relation to the current referral criteria and process for national funding for chest reconstruction surgery. It was noted that this was an ongoing issue and reference made to correspondence between NHS GG&C and NSD.
The Network sought assurance that NSD would review the process and no individual currently within the process would be disadvantaged pending the outcome of the meeting scheduled with the provider and NSD for October.
Mrs Johnson emphasised that NSD, as commissioners were accountable to Scottish Government and NHS Boards for ensuring appropriate governance. She agreed to refer the concerns back to colleagues in NSD as a matter of urgency.
It was highlighted that GICsshould work with patients to ensure they met the current referral criteria for surgery.
Action: Catriona Johnson / Deborah Dunn
Catriona Renfrew confirmed she would share a copy of her email to Dr Mike Winter regarding this issue.
Action: Catriona Renfrew
[Post Meeting Note: Following receipt of referral from GICs. NSD will ensure that the referral is from a specialist clinician and patient has had appropriate psychiatric assessment for chest reconstruction and genital surgery. If both criteria are confirmed, referral will be approved. NSD were previously checking the provider criteria for smoking, weight and hormone treatment on request from the provider clinicians who expressed concerns that inappropriate patients were being referred. This was causing issues of managing patient expectations and capacity at clinics.
NSD are engaging with the GIC clinicians and providersto streamline the pathway, clarify surgicalcriteria and improve patient information to enhance how GIC clinicians support patients at point of referral. It is anticipated that this work will reduce inappropriate referrals, which NSD will continue to monitor.]
2.Minutes from the Last Meeting held on 12th May 2016
Ms Ferguson highlighted Katrina Mitchell’s update around information for trans people with learning disabilities. Booklets are about to go to print and details will be available on the NGICNS website.No other items not covered on the agenda
3.CAMHS
a.Young People Services:
It was discussed that referrals have increased since 2015, and that Sandyford GIC have two new Clinical Psychologists working 5.5 days per week between them, with the requirement of a third still to be recruited in the future to support the work with young people. It was highlighted that Clinical Psychologist are unable to prescribe hormones, take bloods or monitor patients. It was noted that one staff member is working on referrals of 14 years and under, with a focus on ensuring puberty blockers are prescribed as early as is suitable, and another is focusing on 15+ year olds.
Delay in puberty blockers being prescribed were discussed, and it was suggested there should not be a particular age for them being prescribed.
b.Referral Process:
It was noted that some referrals are not made straight away for a variety of reasons depending on the needs of the young patient. It was however agreed that any issues patients have with their individual consultation be discussed directly with their consultant, and they should not be concerned about doing so.
It was agreed that Sandyford staff would record and share their referral process criteria.
Action: Sandyford C&YP Staff
The Chair highlighted that assessment of capacity is required, identifying bottlenecks, as clinical capacity has multiplied by 6, and lengthy waiting times risk corrupting the level of care for patients.
It was noted that one staff member now has a Service Development Session.
4.Service Provision Update
Grampian Update: A locum continues to provide first assessment, however, the current waiting time for access to the Gender Identity Service (GIS) is 12 months.
Grampian is about to provide training for at least oneother consultant (non Psychiatrist) to support this service. In addition, there is a hope to be able to develop a nurse specialist role for the GIS. This will have impact on waiting time and access. They are looking at an alternative site for the GIS to be based in a community health setting, outside of Adult mental health and Gynaecology, which is supported by local users. They are currently able to provide gamete preservation for transgender individuals.
NHS Lothian Service update was circulated. As at the end of September they expected to have around 80 patients awaiting a first appointment and around 300 in follow up. The current waiting time for a first appointment is 5-6 months. Follow up appointments are being offered to schedule.
Lothian is accepting around 15-20 new referrals per month.
David Parker commenced in a post in the clinic on 3/5/16. His role is developing into one of supporting the clinical workload, some casework, community development and training. David's hours in conjunction with a new database to help manage the clinical workload have effectively doubled our clinical capacity. Whilst this work is still at an early stage, feedback from patients has been generally very positive.
A new website is available at
Chalmers street are working with the third sector and have approval for a pilot proposal to offer a transgender sexual health clinic. This will initially be offered to people attending the GIC and will reviewed after six months including an understanding of whether this might be useful to the wider community including people not attending the GIC.
Gordon Wilkinson advised that 17 year olds were now added to the adult list. James Morton noted that 16 and17 can be treated like adults, therefore, should be able to go to adult clinics if it is advantageous for them, and to enable them to go onto hormones. GW confirmed this happens anyway.
Dr McKenna highlighted that NHS Grampian waiting times are approximately 4 months, with some referrals from Argyle. He shared that the NHS Highland Service Planning Team have been supportive, however, funding is still an issue, therefore, they use Sandyford as and when required and thanked Dr Gerber for his ongoing support.
Dr Gerber shared that Sandyford GIC hope to see a difference in their waiting times now that they have two new psychologists and a new Service Manager.
Hair Removal:
Members were informed that NHS Forth Valley provide hair removal sessions once a month, which members agreed was not enough, therefore, The Chair agreed to contact G Foster in NHS Forth Valley.
Action: Catriona Renfrew
5.Surgery
NSSC:
It was noted there was continuing increased growth, with 41 for chest reconstruction, and MtF genital surgery gone up from 9-12 year on year.
Financial Provision:
The finance required had been taken to the NPPPRG (NHS policy group) with financial forecasts. The Director, Mrs Evans, noted that, as long as NSD gets its general uplift NSD should be able to protect funding at projected activity levels into 17-18.
It was agreed that the Network needs to encourage planning,therefore, it may be of benefit to have a 3-5 year forecast of services. This would be taken to the Directors of Planning.
Action: Catriona Renfrew
Deborah Dunn highlighted the possibility of there being a SLWG to look at options for surgery within NHS Scotland. James Morton highlighted the option to split patient population by assignment of sex at birth.
Members were informed that English specialists have a model. It was agreed that Mrs Dunn would check. The Scottish Public Health Network could be involved.
Action: Deborah Dunn
There was also concern discussed around people who de-transition, therefore, having double surgeries, and also a concern of younger people having surgery too early.
It was agreed that Mrs Dunn would contact Public Health to request an algorithm for forecasting, and will share this with members. And Mrs Johnson will contact DPH.
Action: Deborah Dunn / Catriona Johnson
Mrs Dunn shared with members that she and Ms Ferguson had visited Pennine Acute Trust, with plans in place to also visit Nuffield Hospital and St Peters Andrology in September to meet with genital surgeons. Mrs Dunn agreed to highlight concerns surrounding the lack of after-care available to patients during discharge from St Peters Andrology.
Action: Deborah Dunn
6.Endocrinology Services
Members agreed there were no further comments regarding the Endocrinology document. It was agreed this can now be put onto the NGICNS website.
Action: Mary Adams
It was agreed that education is required for Primary Care practitioner and Endocrinologists around the prescribing of bridging hormones. It was discussed that it may be helpful Boards to discuss the variance in prescribing between the health board areas. A meeting to be held in due course.
Action: David Gerber, Catriona Renfrew
7.Waiting Times Update
As per above discussions
8.Scottish Government Update
Catriona Renfrew highlighted that she was seeking an update on the Protocol, requesting that ‘prosthetic’ is removed from it. Mr Stockwell shared that his health colleagues have accepted the changes in the Protocol.
Members also re-discussed that the prescription of wigs is at the discretion of each health board, and that Guidance does not include trans people. Mr Stockwell agreed to advice health colleagues to include transgender people on Guidance.
Action: Simon Stockwell
9.Working Groups
Non-Binary Short Life Working Group (SLWG):
Members were informed of the first meeting of the Non-Binary SLWG which was held in May 2016. Members were informed that the group discussion highlighted many key points of issue for service users, and that these were in the process of being addressed. It was agreed that Sarah Kennedy, David Parker and Sue Brechin would be invited to the next meeting.
Action: Mary Adams
Leaflets SLWG:
It was noted that there has been slow progress regarding the finalisation of the leaflets, however, Aileen Ferguson had met with Simon Smith to progress the children and young people’s leaflet, and a further date for the SLWG would be set.
Action: Mary Adams
It was agreed that the Adult Leaflet would be non-binary inclusive. It was noted that this would be included on the agenda for the next Non-binary meeting to ask for feedback on what should be on the leaflet. It was agreed that the next Non-binary meeting would take place before the next Leaflet SLWG.
Action: Mary Adams
10.AOB
Mrs Ewing shared with members that TranparenTsees now have two new support groups, one in Elgin and one in Perth, as well as the current groups in Edinburgh and Glasgow. Work was also being done in the Borders.
Mrs Ewing also invited members to attend a Mermaids Event on the 14th October 2016 in England, and also offered to source any possible web streaming links to the event and will send this to members.
Action: Allison Ewing
Members were informed of the NNMS Event on 24th October, which is aimed at helping to explain how Networks can influence planning and policy. It was agreed that Ms Adams would circulate details to members.
Action: Mary Adams
The requirement for separate consent for puberty blockers was highlighted, Aileen Ferguson to investigate.
Action: Aileen Ferguson
11.Next meeting
16th November: 11am until 12.30pm, Glasgow.
(DG – Tuesday are good, SK – Wednesdays)
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