Agenda Paper 10
SALFORD PCT COMMISSIONING TEAM
DEVELOPMENT OF COMMISSIONING ARRANGEMENTS FOR
GENDER REASSIGNMENT SERVICES FOR NORTH WEST PATIENTS
SUMMARY
This paper sets out progress achieved to date in the development of protocols, pathways and commissioning guidance for the commissioning of gender reassignment services for north west patients.
The Gender Reassignment Service Development Group with broad representation from commissioners, both Mental Health and PCT, providers and patients (Appendix 3) has focused work on clarifying the patient pathway (Appendix 1), identifying those areas where further work is required and making recommendations for future service development. This paper describes each stage of the patient pathway with details of any evidence to support the provision of and the cost effectiveness of any treatment. Information on prevalence and contracting numbers is set out in Appendix 2.
The group agreed that highest priority should be given to addressing issues around accessing local mental health services in order to be able to obtain a referral to specialist gender identity mental health services. Approval is therefore sought from collaborative commissioners for the Gender Identity Service Development Group to undertake a piece of work to scope in detail the problems and potential solutions around access to both local and specialist mental health services.
TERMINOLOGY
EUR / Effective Use of ResourcesF2M / Female to Male
GIC / Gender Identity Clinic
GRS / Gender Reassignment Surgery
GRSDG / Gender Reassignment Service Development Group
HBSOC / The Harry Benjamin International Gender Dysphoria Association’s Standards of Care for Gender Identity Disorders
M2F / Male to Female
RCTs / Random Controlled Trials
RLE / Real Life Experience
UCLH / University College London Hospitals
SALFORD PCT COMMISSIONING TEAM
DEVELOPMENT OF COMMISSIONING ARRANGEMENTS FOR
GENDER REASSIGNMENT SERVICES FOR NORTH WEST PATIENTS
1. INTRODUCTION
Salford PCT, as lead commissioner for Gender Reassignment Surgery on behalf of North West PCTs, presented a paper to Greater Manchester Collaborative Commissioning Group in May 2005 setting out a proposal to set up a working group in order to develop protocols, pathways and commissioning guidance for gender reassignment patients of all of the North West PCTs. The paper subsequently received the approval of North West Collaborative Commissioning Groups and a working group was established. This current paper sets out progress achieved to date against agreed objectives and the proposed next steps.
2. OUTLINE OF PROGRESS TO DATE
The Gender Reassignment Service Development Group (GRSDG), with broad representation from commissioners (both PCT and Mental Health), providers and patient representatives (Appendix 3) met in October 2005. The timetable set out in the May paper was for the issues in question to have been scoped in greater detail with a draft policy prepared by end December 2005 and a subsequent implementation plan agreed by the end March 2006. The development group identified the following key priorities:
· Improve information to inform planning
· ensure consistency of approach across commissioning organisations and GPs
· Investigate development of risk share arrangements
In the longer term the group has also identified the need to:
· establish providers of services
· develop quality monitoring framework
Discussions within the group have been wide ranging and a number of other issues have been considered. The approach the group has taken has been to clarify the patient pathway (Appendix 1).
3. BACKGROUND
Specialist Gender Identity Clinics apply The Harry Benjamin International Gender Dysporia Association’s Standards of Care For Gender Identity Disorders (HBSOC). The Royal Colleges of Medicine & Psychiatry are developing new standards of care for gender dysphoria in the U.K. These have been anticipated for some time but have yet to be published and are unlikely to be so for at least another 6 months.
The Trent Research and Development Support Unit have recently assessed
the evidence associated with key points on the treatment pathways, focusing on Gender Reassignment Surgery, on behalf of commissioners (Sutcliffe et al, 2005.) They considered 6 earlier reviews which all comment on the poor quality of the research evidence available; no randomised controlled trials (RCTs) were available and the studies reflect lower grades of evidence, and had further problems in their design. Conclusions from the reviews are understandably tentative, but highlight improvements in patients across most studies, although 10-15% of transsexuals who undergo GRS having poor outcomes. They stated no published evidence on cost-effectiveness is available, nor its derivation possible.
There are three distinct pressures on service development that are pulling in different directions:
· Lack of available evidence to support the cost effectiveness of gender reassignment surgery. This does not support the commitment of further resources to the development of the service.
· PCTs are legally obliged to make treatment available following the decision in North West Lancashire Health Authority v A, D & G and the Parliamentary Forum on Transsexualism, chaired by Lynne Jones MP, published Guidelines For Health Organisations Commissioning Treatment Services For Individuals Experiencing Gender Dysphoria and Transsexualism in March 2005, recommending a more comprehensive service provision than currently available.
· Contact with service users has revealed an underlying feeling that there are too many delays along the patient pathway.
Anecdotal evidence from patient representatives has highlighted the ethical views of some healthcare professionals regarding certain procedures such as masctetomy for a F2M patient or the provision of hormones. Such issues are reported to arise when the required service is not being provided by specialist gender services.
North West Commissioners are not alone in considering service provision for transgender patients. The Health Commission Wales set out its policy on Gender Identity Disorder Services in January 2005 and a separate study considered transgender services for the residents of Sussex in September 2005. Both of these documents identify similar issues regarding care pathways and local access to services.
Information on prevalence and contracting numbers is set out in Appendix 2. It has not been possible to identify the number of patients accessing NHS specialist mental health services, however it has been possible to identify 71 M2F patients and 47 F2M patients who have or who are in the process of accessing NHS gender reassignment surgical services.
4. PATIENT PATHWAY
4.1 Overview
The discussions and work of the GRSDG has culminated in the development of a Pathway for Accessing Services for Transgender Persons, Appendix 1. This pathway is essentially the same as the current pathway for patients who undergo the whole of their gender reassignment through the NHS. Where this differs or services are not currently provided or where specific criteria/ guidelines are to be adhered to is detailed below.
In broad outline the pathway is as follows:
· A patient sees their GP who refers them to a local psychiatrist.
· Patient sees local psychiatrist and a decision to refer to specialist services is made.
· Psychiatrist refers patient to the specialist mental health services.
· Patient is assessed by the specialist services and a diagnosis made.
· If the patient is to continue, a treatment plan is agreed.
· Patient commences reversible treatment including speech therapy if required. Male-to-female patients may require facial hair removal at this stage prior to commencing Real Life Experience (RLE).
· Patient commences RLE.
· After meeting eligibility and readiness criteria, patient commences irreversible treatments: hormone therapy and/or other treatments including mastectomy for female-to-male patients.
· Patient completes RLE. If to proceed for genital surgery, a second mental health opinion is obtained.
· Patient assessed for surgery.
· Patient undergoes gender reassignment surgery (GRS).
· Patient is monitored for ongoing hormone therapy and receives local counselling and support as appropriate.
· Patient receives specialist services as appropriate, e.g. revision surgery.
· At all stages of the pathway, information and advice to be available to patients, GPs, families, carers and other interested bodies.
· At all stages of the pathway, patient remains under the care of local services as appropriate.
· Patients may exit at any stage on the pathway.
4.2 Information and Advice.
Currently there is great disparity in the information and advice available to transgender patients at all stages of their journey. Patient representatives have advised that there are a number of registered charities that offer support and advice to people who are living with gender related problems, ranging from counselling to advice on hairdressing, but the quality and nature of this information and advice is not regulated and is not available universally. GPs, other clinicians and health workers also require information and advice on transgender patients.
4.3 GP Services
The patient’s own GP is the first point of contact on the NHS pathway. One of the GRSDG patient representatives undertook a small ad hoc survey of 16 transgender service users. This highlighted the disparity of information, advice and support patients received from their GP, ranging from GPs not willing to help or being obstructive to GPs described as totally supportive and extremely helpful, even when not very knowledgeable. Wilson et all (1996) noted 31% of trans patients had presented to their practice in the last 12 months, however several GP respondents to their survey added comments to the effect that they lacked knowledge both of the condition itself and of the pathways of referral.
Recommendation:
Once agreed a mechanism for providing GPs with more information about the patient pathway is developed.
4.4 General Mental Health Assessment.
Gender Identity Clinics (GIC) which North West patients have access to (e.g. Leeds Mental Health Trust, West London Mental Health Trust) operate as tertiary centres and consequently only accept referral from secondary mental health services.
All of the North West Mental Health Trusts were approached regarding the provision of services for patients with suspected gender dysphoria. In addition to a waiting time of up to 12 months from GP referral to first appointment the following issues were highlighted:
§ lack of psychiatrists with a specific interest/specialism in this area leading to difficulties in accessing an appropriate mental health assessment, and lack of succession planning when existing clinicians cease operating
§ lack of specific arrangements/policies for patients referred due to gender issues. Patients have to compete against other referrals and are not seen as a priority leading to long waiting times. Screening these patients who are unlikely to have mental illness detracts resources from where urgently required.
§ lack of information for clinicians on the requirement for an initial assessment and the onward patient pathway.
§ Difficulties in referring patients into a specialist GIC and the lack of a local GIC for North West patients.
Recommendation:
At present patients have to go through local mental health services, but this is an area the GRSDG identified as a priority for development.
4.5 Specialist Mental Health Services – Gender Identity Clinic (GIC)
4.5.1 Diagnosis
There is debate in relation to the diagnosis. ICD-10 provides five diagnoses for gender identity disorders. Transexualism (F64.0) is the most relevant, it has three criteria:
1. The desire to live and be accepted as a member of the opposite sex, usually accompanied by the wish to make his or her body as congruent as possible with the preferred sex through surgery and hormone treatment;
2. The transsexual identity has been present persistently for at least two years;
3. The disorder is not a symptom of another mental disorder or a chromosomal abnormality.
The other diagnoses are Dual-role Transvestism (F64.1) which relates to individuals who have no desire for a permanent change to the opposite sex; Gender Identity Disorder of Childhood (F64.2); Gender Identity Disorders (F64.8) and Gender Identity Disorder, Unspecified (F64.9) which have no specific criteria.
The HBSOC recommend only mental health professionals who meet certain set competencies should diagnose gender identity disorder. They list a number of other responsibilities of these professionals including diagnosis and arranging treatment of co-morbid psychiatric problems, making formal recommendations to medical and surgical colleagues in relation to hormonal and surgical treatment, being available for follow-up and being part of a team with a special interest in gender identity disorders, hence the diagnosis is made by the GIC.
4.5.2 Reversible treatments
Following an initial assessment and diagnosis by the GIC patients continue on the pathway. The first stage of the treatment plan will be reversible such as psychotherapy and speech therapy. Sutcliffe et al (2005) report there are many studies investigating the use of voice therapy for trans patients but highlight the lack of quality evidence Examples are de Bruin et al (2000), Gunzburger (1995), Gelfer (1999.) However no systematic review of the evidence has been identified. The opinion of most authors is that conservative therapeutic approaches (i.e. non-surgical) can have positive outcomes. Hormonal therapy for female-to-male clients often lowers pitch but some therapists seem to consider factors beyond basic pitch (e.g. loudness, laughing, gestures.) Most authors agree that speech therapists dealing with trans clients should be specialist in voice and many consider that they should be specialist in trans patients.
The HBSOC state there are concerns about the safety and effectiveness of voice modification surgery and more follow-up research should be done prior to widespread use of this procedure. They also recommend that in order to protect their vocal cords, patients who elect this procedure should do so after all other surgeries requiring general anaesthesia with intubation are completed.
4.5.3 Irreversible Treatments
The point is then reached when continuing along the pathway involves irreversible treatment, such as mastectomy and hysterectomy, as well as hormone therapy. The HBSOC set out the eligibility and readiness criteria for patients to receive the following irreversible treatments:
§ Hormone treatment
§ Breast Surgery
§ Gender Reassignment surgery
The HBSOC specify what the Mental Health professional’s documentation letter for hormone therapy or irreversible surgery should include. One letter is required for instituting hormone therapy or for breast surgery but two letters are generally required for genital surgery. These letters provide the prescribing physician and/or the surgeon with a degree of assurance that the referring mental health professional is knowledgeable and competent concerning gender identity disorders.