All Wales Gender Dysphoria Partnership Board

18th December 2013

10.00 - 12.00

WHSSC HQ

Present:

Professor Simon Smail (SS), Non-Officer Member and Chair

Jenny-Anne Bishop (JAB), Stakeholder Representative, Unique

Voirrey Manson (VM), Senior Equality and Human Rights Advisor, NHS CEHR

Sarah Morley (SM), Assistant Director of Workforce and OD, Cardiff and Vale UHB

Andrea Mowthorpe (AM), Consultant Psychologist – CAMHS, Hywel Dda LHB

Heather Ramessur-Marsden (HRM), Screening Promotion Officer, Public Health Wales

Lewis Rimmer (LR), Stakeholder Representative, Transgender Awareness Wales/FTM Wales

Carl Shortland (CSh), Specialised Planner, WHSSC

Jane Trowman (JT), Head of Planning, Betsi Cadwaladr University Health Board

Carey Wood-Duffy (CWD), Stakeholder Representative, South Wales Fire and Rescue

David Wilmott (DW), Head of Nursing and Quality, WHSSC

In Attendance:

Claire Sullivan (CSu), Communication and Engagement, NHS CEHR

Hollie Louise Thomas (HLT), Project Support Manager, WHSSC

1 INTRODUCTION
  • Chair’s Welcome and Introduction
SSwelcomed everyone to the meeting and introductions were made around the table.
  • Apologies for absence
Apologies were noted from the following individuals:
Nahla Jamil, Consultant Psychiatrist, Aneurin Bevan Health Board
Adeel Siddiqui, Consultant Psychiatrist, Abertawe Bro Morgannwg University Health Board
Ann Williams, IPFR Representative, WHSSC
Cathie Steele, Corporate Governance Manager, WHSSC
2 MINUTES AND ACTIONS ARISING FROM LAST MEETING HELD
  • Confirm the minutes from meeting held on 30th September 2013 and agreement to be made public
The minutes of the previous meeting held on the 30th September 2013 were agreed as accurate with no amendments necessary.
The way of making the board minutes accessible to the wider public was discussed as sub groups of the WHSSC Joint Committee such as the All Wales Gender Dysphoria Partnership Board (AWGDPB) are not normally made public. JAB emphasised the importance of sharing information with the trans community and CWD highlighted the need to balance this with confidentiality.
ACTION – DW to write a core brief after each meeting which would be circulated widely including social networks and the website.
3 TERMS OF REFERENCE
  • Agree the revised Terms of Reference (ToR)
The AWGDPB ToR was noted to be signed off at the next meeting.
4 REVIEW OF GENDER DYSPHORIA SERVICES IN ENGLAND
  • Feedback from Simon Smail, David Wilmott and Jenny-Anne Bishop from workshop held on 7th November 2013
The general feedback from the workshop was positive. JAB felt it was very open and engaging particularly the use of social media and a live twitter feed. Key information relating to the Gender Dysphoria services in England was made available, including;
-Primary care issues
-Assisting the Welsh reconfiguration of Gender Dysphoria Services
-Addressing an alternative provider
-The interim guidelines for NHS England
The workshop looked at Quality indicators, of which there was a long list. DW suggested sub dashboards in this area of work for Wales. This was well received by the group.
SS discussed the consensus building in the clinical pathway within England and that the Gender Dysphoria Services in Wales could adopt such aspects.
DW confirmed that the English pathway is to be published in Spring 2014.
ACTION – DW to attend appropriate meetings in England to monitor the progress of the English pathway.
ACTION – SS/DW to meet with John Dean in January 2014.
ACTION – VM to contact the Corporate Development Team within Cwm Taf Health Board to see if it is possible to set up a social networkingFacebook page for the AWGDPB.
CWD stressed that when constructing information publically, it is imperative that information is not focussed on Transfemales and Transmales alone as there are patients on the Gender Dysphoria NHS pathway who may wish to be neither classed as Transmales orTransfemales.
  • Feedback from Jenny-Anne Bishop from workshop held on the 7th November 2013
ACTION: HLT to gather and circulate the minutes of the workshop and to circulate to the AWGDPB Group.
JAB stated that the current number of new Gender Dysphoria cases in England is averaging 2500 a year which equates to roughly 200 in Wales. JAB emphasised the extent to which providers are unaware of the individual circumstances when they are seeking or approaching treatment within the NHS. It was outlined that better training for primary and secondary care professionals, particularly in relation to appropriate referrals is necessary. CWD suggested the use of informative leaflets etc.
ACTION – HLT to check with Cathie Steele the whereabouts on the list of FAQ that JAB had previously been developing in conjunction with WHSSC and to put on the agenda for the next meeting.
DW discussed the possibility of producing desktop guidelines for GP’s and other professional groups on delivering health services with the Royal College of General Practitioners.
JAB explained that Gender Identity clinics are overstretched and patients often have to take responsibility for their own healthcare particularly in relation to the gender reassignment pathway. JABmentioned the ICD-10 codes accordingly for relocation out of the Mental Health category.
  • The experience of patients at Charing Cross Hospital
DW feedback the results of gathering patient experience from Charing Cross Hospital, less than half of service users felt the service was satisfactory.
ACTION - DW explained that WHSSC are waiting for a summary from Charing Cross and this will be shared with the group.
A discussion took place on the need for quality indicators which took account of patient experience. JT questioned how this information is captured. DW explained that this was included on the Quality Indicators established by WHSSC. DW stated that Welsh and English commissioners should work together to strive for better outcomes. JAB stressed the importance of better communication overall particularly in relation to waiting times with patients.
ACTION – DW to bring the WHSSC report on Quality Indicators to the next meeting.
  • NHS England Interim Gender Dysphoria Protocol and Service Guideline 2013/14
SS explained that it was supported and appreciated that DW sits on the group within NHS England concentrating on the Dysphoria Protocol and Service Guideline 2013/14.
JAB suggested to the group for DW to be involved with the Scottish protocol as the interim English protocol is based on the protocol established in Scotland.
  • Provision of Chest Reconstruction Surgery for Transmen
LR gave some background to the provision chest reconstruction surgery for Transmen, it is not currently provided in Wales. Catherine Milroy and Andrew Yelland are surgeons based in Englandwho are specialists in this field of surgery although there techniques are very different. LR wanted the group to explore the potential for Andrew Yelland to be included in the Welsh pathway for Gender Dysphoria Patients.
JAB drew the group’s attention to the English protocol after LR explained that the protocol includes indications for the best quality surgery.
ACTION – DW to attend the next Clinical guideline group and feedback to the group. DW to also meet with Andrew Yelland to discuss the services he can offer on an NHS service basis.
DW ensured the message was put across to the group that the service can only include NHS providers/services which currently there is only one in this area of work. I.e. Catherine Milroy.
SM emphasised the need to draw up the criteria for provision of NHS services for Welsh patients, i.e. the clinical specifications and leverage within the service. DW explained that Key Performance Indicators (KPI’s) can now be established in this area.
ACTION – DW to check out the guidance on using a privately funded service if the cost of the service is cheaper than an NHS service that’s equally compared.
Further Guidance
  • A guide for heath staff providing care for people who are trans. GIRES & Unison
VM discussed with the group the most appropriate means of circulating the guide to Health staff. SM questioned if the NHS Wales badge could be put on the guide.
ACTION – VM/JAB to facilitate agreement with GIRES/Unison to amend the guidelines to reflect a Wales perspective.
JT suggested a quarterly newsletter for General Practice to raise the awareness and to liaise with Cwm Taf Communications.
ACTION – VM/CS/HLT to liaise with Madeliene Bryndley as a contact in Corporate Development, Cwm Taf University Health Board and Dr Paul Myers Public Health Wales.
SM emphasised that this area of service work is not directly relating to the Workforce and Organisational Development areas and more focussed by the nursing/executive teams on a national basis.
  • Good Practice Guidelines for the assessment and treatment of adults with Gender Dysphoria
SS assured the group that the guidelines will feed into the wider work achieved by the group. JAB stated that the guidelines had been endorsed by ten other relevant colleagues including secondary care professionals.
ACTION – WHSSC IPFR to collect data for the figures of young people (CAMHS) for Gender Dysphoria referrals.
SS discussed for an individual to be a guest part of the Board who works within CAMHS to talk about the data and figures gathered. To be established at the next meeting.
5 WORKSTREAMS
  • Public Health Screening services
HRM briefed the group on the developments of Public Health Screening for the trans community in Wales, including awareness raising through the development of information leaflets and a series of FAQ for screening staff.
  • Welsh Ambulance Service
Discussions have taken place on the development of advice and information for frontline ambulance staff.
  • Swansea Sparkle 16th November 2013
Members of the AWGDPB attended the Swansea Sparkle event on the 16th November, it was very well attended with a good mix of members of the public and organisations. JAB and VM ran a workshop on engagement from the from a service user perspective which was well received.
Subgroups of the Board
The following subgroups will be established:
  1. Website and Communication
  2. Wider Stakeholder Group
  3. Regionalising Services (that includes Evidence and Research)
ACTION – HLT to send CSh the ToR of each subgroup as and when they are developed for Programme Team sign off.
CSu and HLT are leading on the Website and Communication subgroup work, VM would lead on the Wider Stakeholder Group and a chair for the Regionalising Services Group would be sought.
ACTION – DW to approach Daniel Phillips, Director of Planning, WHSSC to discuss.
6 RESOURCES AND CALL FOR EVIDENCE
  • Process of resources being allocated to the work of the Board
VM explained that this Board has a legal duty to engage in the Wider Transgender community which is difficult to achieve without a budget.
ACTION – VM/DW to establish some monies for the work of this Board in certain areas.
7 AOB
The Board was reminded of its legal duty to engage with the wider trans community, a budget would need to be identified to undertake this work.
  • Trans* Study Day
JAB informed the group of a Trans* Study day for GP’s and clinicians recently held in Manchester. There were presentations from the trans community and professional staff. The day covered such issues as working partnerships, the law, endocrinology.
JAB proposed this type of event to be held in Wales.
ACTION – VM to approach the Royal College of General Practitioners for advice on this.
8 DATES OF FUTURE MEETINGS
  • 4th March 2014, 13:00 - 15:00
  • 4th June 2014, 13:00 – 15:00 (Discussion Point: Change of date to meeting. To be held in Manchester Sparkle in July – i.e.Thursday 10th or Friday 11th July?)
SS explained that this proposed idea may case a technical difficulty in holding a Welsh meeting within England boundaries. Therefore, the group agreed to host this meeting on Friday 11th July 2014 in North Wales.
ACTION – HLT to explore a venue in North Wales for this meeting. E.g Clwydian House.
  • 3rd September 2014, 13:00 – 15:00

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