GENDER IDENTITY SERVICE PATHWAY REVIEW WORKING GROUP REPORT FROM LISTENING EVENTS
In August 2019, the Department of Health asked the Health and Social Care Board to lead on a review of the gender identity pathway. A review group was established to take this important work forward. Members of the group were keen that the experiences of those who use the services would inform the way forward and two Listening Events were arranged to hear first-hand from service users and local groups. The opportunity was also taken at the Listening Events to seek service user representation to join the review group. I would like to thank everyone who took the time to attend one of the two Listening Events held in November and December 2019. Many thanks also to those who shared their personal stories with us in the hope that this would improve things for others. The following report is a summary of the key issues from the two Listening Events which took place on Wednesday 27th November 2019 in Belfast and on Tuesday 3rd December 2019 in Derry/Londonderry. The events were advertised via the Brackenburn Clinic website, by posters around the Belfast Trust sites and on the facebook and twitter accounts of the Trusts, the Health and Social Care Board (HSCB) and the Patient and Client Council (PCC). Letters were also issued to each of the Voluntary and Community organisations that provide support and advice on transgender issues. Those interested in attending could either register their attendance by contacting the HSCB or by turning up on either evening. A person was assigned to each of the tables each evening to record the key issues raised; many thanks to those from the Department of Health (DoH), Health and Social Care Board (HSCB), Belfast Health and Social Care Trust (BHSCT) and the Patient and Client Council (PCC) who undertook this role. It was much appreciated. The listening events took the form of small focus group sessions with questions to help structure the conversation. Bride Harkin Chair, Gender Identity Services Pathway Review Working Group
__________________________________________________________________________________ Page 1
Q1. When a person is being referred to the Gender Identity Service, that referral is currently made by the General Practitioner (GP). What information, support or advice would you expect to get from your GP and from the Belfast Trust at the time of referral? THEMES Issues Raised by Service Users THE PATIENT’S JOURNEY – The service users said that there appeared to be limited information available on the journey from patient referral through to assessment, and the health care options available (eg hormone treatment, surgery, referral onto other services, etc). REFERRAL FOR SERVICES – There was a suggestion as to whether access to services could be extended beyond the current route which is via the GP. – It was noted that the assessment process is presently quite lengthy for young people and adults. WAITING TIMES – It would be helpful if the Belfast Health and Social Care Trust could make information available as to waiting times in respect of the various stages of the pathway. It would be useful if this information was available to the GP to share with service users. SUPPORT SERVICES AVAILABLE FROM THE VOLUNTARY SECTOR – It would be useful to have a list of Voluntary & Community support services. – There was recognition of the very valuable work undertaken by a range of voluntary and community sector support groups. These and other organisations have been a tremendous source of support for many people accessing services and those on the waiting list. INFORMATION – Service users felt that there should be more comprehensive information available in respect of transgender services. – Service users would welcome guidance about accessing Gender Identity Services following the initial GP consultation. – It was noted that there can be conflicting information on a range of websites. – There was a query as to the local availability of an information pack from the British Medical Association. It was considered that a comprehensive information pack with detail on local resources, timescales and waiting times would make a real difference.
SERVICE USER VIEWS ON THE ROLE OF THE GENERAL PRACTITIONER (GP) – Service users considered that GPs were not always fully aware of the issues relating to gender identity and the treatment options available, including information on waiting times, etc. – There was a consensus that as first point of contact, even if the GP is unable to provide immediate answers, a sensitive, understanding and empathetic approach is essential as the service user will be feeling vulnerable – It is important for the service users to feel confident in the knowledge that the GP has the necessary information available to offer appropriate and timely support. A parent of a service user said that trust is important…. “Don’t want her to be distressed”. – “Needs to be more focussed awareness-raising among GPs in respect of transgender issues”
__________________________________________________________________________________ Page 2
– Service users expressed the view that a detailed assessment, including a psychiatric evaluation, should be undertaken in advance of hormone treatment being prescribed as it may be that in some cases this treatment may cause issues in the longer term. – It was acknowledged that although confidentiality was paramount, there was a need for information about an individual’s various stages of treatment to be recorded and available to professionals on a common IT platform. It was considered that this facility would enhance communication and timeliness of treatment. SERVICE USERS VIEWS ON ROLE OF THE BELFAST TRUST PROVIDING GENDER IDENTITY CLINIC – As previously discussed, there is a need to ensure that updated statistics on Gender Identity Service waiting times are provided to GPs on an ongoing basis. – There should be a robust person-centred assessment process available to all service users attending Gender Identity Services following referral from a GP. – It was noted that in some instances information can be incomplete following a GP referral which is not helpful in respect of presenting a complete history. – Service users commented that the experience of trans-females would appear to be different from trans-males at Endocrine services. – The view was expressed that as travel is challenging it would be preferable if services could be delivered locally. A query was raised as to whether it would be feasible to provide surgery in Northern Ireland on a periodic basis. – In particular there was a consensus that it would be helpful to include local aftercare following surgery, in a service model. – Service users considered that as transgender is no longer classified as a psychiatric condition, it was not appropriate to have a referral route from Child and Adolescent Mental Health Services (CAMHS). MANAGING EXPECTATIONS – Service users considered it would be reasonable to expect an adult gender identity service to provide ongoing intensive psychological support, relevant information relating to a realistic pathway and access to hormones / surgery within a realistic time frame following appropriate assessment.
– It was noted that the Brackenburn website, which is used by the Belfast Trust to communicate information, may not be routinely visited by service users. – It was suggested that information leaflets should be made more widely available in GP waiting rooms, Gender Identity Services waiting rooms and other such areas. – There needs to be a shared care protocol between professionals. RECORD KEEPING / COMPUTER SYSTEMS – Service users are aware that “shared” computer systems are not currently available. – There is an issue regarding the recording of gender on information systems and more clarity and information are required around transgender definitions. HOLISTIC CARE – There is a need to adopt a holistic approach to care. – There was discussion regarding the other areas of physical health which are significant and need to be taken into account in the overall assessment, such as appropriate referrals for cervical screening, prostate health, etc.
__________________________________________________________________________________ Page 3
– Service users suggested that consideration should be given to undertaking some diagnostic tests in the primary care setting. SERVICE USERS’ VIEWS ON THEIR MENTAL HEALTH – There needs to be careful consideration of the overall impact of gender identity on mental health. – The issue of transition from child to adult services was discussed and it was highlighted that as this is a significant period for potential risks to emerge, there should be particular attention to the need for a smooth transition in terms of provision of services.
__________________________________________________________________________________ Page 4
Q2. When you attend for assessment at the Gender Identity Services, what would you expect to receive in terms of support, information and treatment? THEME(S) Issues Raised by Service Users INFORMATION LEAFLETS / PACKS – Information leaflets describing the service should be available for both service users and their carer(s). These leaflets/information packs should incorporate frequently asked questions. TERMINOLOGY – Concern was expressed at the use of some terminology such as “Real Life Experience”. LINKS TO OTHER AREAS OF CARE REQUIRED – In light of the apparent prevalence of ASD in gender dysphoria, it was considered useful to ensure that any new model took this into account. – Counselling and mental health support. – Fertility preservation / fertility counselling. – Information about Speech and Language Therapy. – Information about Voluntary and Community groups. SERVICE USERS’ VIEWS ON PRE AND AFTERCARE FOR SURGERY IN NORTHERN IRELAND – It was agreed that there should be open and transparent discussion about choices including the implications of the service user potentially changing their mind. – There was consensus that there should be consent to any form of treatment including surgery. GENDER RECOGNITION CERTIFICATE (GRC) – Some service users raised the issue of the requirement to have this Certificate signed by a health care professional to enable them to get married. – There was also discussion about the difficulties in obtaining signatures for passport and driving licence applications. SERVICE USERS’ VIEWS ON REFERRAL TO OTHER SERVICES – Service users said they would appreciate information about how referrals are made to other services which they may need to access and the waiting times for these, eg Endocrinology, Speech and Language Therapy, Dermatology, etc.
TRAVEL TO APPOINTMENTS – It was noted that as there is only one Gender Identity clinic which is based in Belfast, it can be challenging to access all the necessary appointments. OPEN AND TRANSPARENT APPROACH – Service users expressed the need to present themselves in whatever way they feel comfortable. – It was acknowledged that opportunities to have contact with another trans-person as a mediator / patient advocate can be very helpful. – There was agreement that it would be useful to incorporate service user involvement in the service, particularly as a means of sharing good experiences. – There is a desire to have a focus on well-being. – Service users suggested that consideration should be given to possible linkages with the education system.
__________________________________________________________________________________ Page 5
Q3. If you are familiar with the current service pathway, what are the three main issues that you would want the Pathway Review Group to consider and why? THEME(S) Issues Raised by Service Users CLEAR PATHWAY – Service users felt they needed to have accurate and reliable information on services and the journey from referral through to intervention and all support services and other options available to make informed choices. – Knowledge of Autism and experience of working with service users with Autism should be included within the pathway. – There should be recognition of the fact that not all service users want the same pathway. – Service users should be able to decide their own gender through a legal route – “self-determine” as in the Republic of Ireland. – There are concerns about the pathway post 16 years. – It would appear that the current pathway may not be providing care for sufficient people. – Service users need to be empowered to participate in decisions about their care and to feel they have a voice. – Surgery should take place as scheduled. – Availability of Speech and Language Therapy. – Availability of a pathway which is accessible and timely. WAITING TIMES – Service users expressed the difficulties and challenges associated with waiting for support and treatment. – Some service users indicated that they would like to know about private options. SERVICE USERS’ VIEWS ON PRIMARY CARE – It was agreed that GPs and other professionals should be provided with specific training so that they are aware of the issues relating to service users with gender identity dysphoria andthe available interventions. SERVICE USERS’ VIEWS ON SECONDARY CARE – Service users expressed the view that there is an expectation that secondary care professionals should have wide ranging and up to date knowledge on gender identity dysphoria. – There is a need for clear and timely communication from secondary to primary care. – There was discussion about the criteria and the need to potentially review this or have more clarity. – “Never anyone else at the Clinic – it is a very lonely process”. DEVELOPMENTALLY AGE APPROPRIATE CARE – There was wide ranging discussion about the need for care to be considered from the young service user and their carer(s) right through to the older service user and their family and how services should be age appropriate. SERVICE USERS’ VIEWS ON OTHER OPTIONS OF CARE / LOCATIONS – It was considered that there should be options to pay privately for treatment and information on choices available locally and in other countries. There was a suggestion that potentially
__________________________________________________________________________________ Page 6
Universities could be asked to develop a module. – Service users discussed the possibility of the clinic being located somewhere other than Knockbracken and potentially in a Health and Wellbeing Centre. ADVOCACY ROLES / SUPPORT FOR SERVICE USERS – It was agreed that it would be helpful to have a Service Users’ Forum. – There was a suggestion that statutory services should facilitate some form of peer group / social contact with other service users and their families / carers. AFTERCARE – It was noted that following surgery, some service users may not be in a position to return to work for several months.
__________________________________________________________________________________ Page 7
Q4. The Pathway Review Group has recently been established and it has representatives from the Health and Social Care Board (HSCB), Public Health Agency (PHA), Department of Health (DoH), Belfast Health and Social Care Trust, General Practitioners (GPs), and the Patient and Client Council (PCC). How best can we ensure representation from service users to help us with the review of the pathway? THEME(S) Issues Raised by Service Users WIDER COMMUNICATION – There needs to be a wider “reach out” to service users using a range of communication tools and different mechanisms including social media, eg facebook, twitter, email contacts, etc. – There is a need to ensure engagement from across the various disparate Transgender Groups. – If possible, it would be helpful to share these questions from the Listening Event with the various groups so that they can shape the response. REPRESENTATION – Service users felt that a Forum would be useful and if longer term input was required, it would be helpful to rotate representation to capture a range of views. – Representation should include different service users who have been through the various stages of the gender identity process, and also include parents / carers. – The number of Trust / Board / Department of Health representation on the Group should be limited so that the service users do not feel out-numbered.
__________________________________________________________________________________ Page 8
EVALUATION From those service users and their carers who attended the Belfast and/or the Derry /Londonderry Listening Events, the overall satisfaction rate was quite high. Below are some of the comments shared on the Evaluation Forms following the events, either returned on the night or submitted back to the HSCB. “Thanks for the opportunity to engage”. “Very beneficial evening – hopeful things will improve within the services”. “Not all support groups were present at this meeting. Was this because it was held in a Church or because the Gender Identity Clinic is the “enemy”? Non-binary people definitely need more representation”. “This was a great session – I just think it could have been a little longer in time”. “Good opportunity to speak on behalf of a service user”. “Really good experience – I hope you keep it going”. “Disappointing there was not a greater level of attendance given that we know there are so many young people who are highly distressed about the lack of service provision. Perhaps indirect engagement via online consultation could gather additional views”. APPLICATION TO BECOME A MEMBER OF THE WORKING GROUP A number of applications were submitted to the HSCB following the Listening Events and these completed forms were weighted and two Service Users were appointed to become members of the Pathway Review Working Group. Those who were unsuccessful were advised by the Chair of the Working Group. It is hoped that a wider liaison panel will be established in due course.
__________________________________________________________________________________ Page 9