Written evidence submitted by Action for Trans Health to the Transgender Equality Inquiry

1 Executive Summary

This memorandum identifies several concerns with current practice within trans practice, including; long waiting times, poor staff retention leading to a service which lacks resilience, poor communication processes between clinicians and patients, and the use of a pathologising diagnostic model which is focused on binary patients to the exclusion of those who identify as non-binary. These issues within the trans healthcare system have an ongoing significant impact on many trans patient’s mental and physical health, including driving many trans people to self-medicate. Within this report we have identified key opportunities and recommendations to address these concerns. The principle recommendations are the adoption of the informed consent model, increased training of clinicians, and increased funding for trans healthcare. We believe that adopting these recommendations will significantly improve the patient experience, as well as offering potential long term cost savings and demand for other services.

2 About this memorandum

2.1 Action for Trans Health’s written evidence to the Women and Equalities Select Committee Trans Inquiry provided a broad overview of issues and key recommendations for a wide variety of areas around trans health including; sex work, the use of alcohol and other drugs, self-medication, non-binary health needs, and trans health in prison and asylum seeker detention centres.

2.2 This memorandum focuses on issues around trans healthcare delivered by Gender Identity Clinics and Services. We have identified several areas to address: staffing issues (Section 2), waiting times, mental health impacts, self-medication.

3. Staffing issues

3.1. In recent years there have been a series of interruptions to gender identity services due to staffing issues. The most notable examples are the continued lack of a Consultant Psychiatrist specialising in Gender at Grampian GIC and interruptions to vaginoplasty services at Charing Cross Hospital when a vaginoplasty surgeon resigned from NHS work. Both of these situations resulted in significant disruptions to services. Charing Cross services were disrupted by a few months whilst a full time replacement surgeon was found, and continues to have a large backlog of work with the current average waiting time for surgery at 73.2 weeks[1], much higher than the 18 week referral to treatment standard (a statutory requirement within the NHS constitution). Services at Grampian have been disrupted for longer than a year now and are in need of urgent attention.

3.2 We are concerned that the majority of gender identity services rely on a small number of specialist staff and that often this means provision is disrupted for a long period of time when a single staff member is ill or leaves the service. Given that GICs are currently not meeting the 18 week referral to treatment standard, any disruption is service is likely to increase waiting times even further and have a negative impact on patient’s wellbeing.

3.3 We believe that retaining and expanding current staffing levels should be a matter of priority in order to improve resilience within gender identity services, improve service provision, reduce waiting times, and improve the patient experience.

3.4 In our extensive experience of conducting trans training for clinical staff across the NHS, we note that knowledge of trans patients’ needs are very poorly understood. This is due to a lack of mandatory training on trans issues within UK medical schools. We believe that this also results in many trainee doctors not knowing that trans health is something it is possible to specialise in, contributing to a lack new staff entering the service.

3.5 We recommend:

a)    Additional funding should be made available to employ additional clinical and administrative staff across gender identity services in order to increase capacity and reduce waiting times.

b)    Trans healthcare issues need to be covered as part of the curriculum in medical schools. This will not only improve patient experience, but also  trainee doctors may come to understand that trans healthcare is a specific area of specialism available to them, ensuring that the skills gap can be covered.

4. Waiting times

4.1 UK Trans Info produce a quarterly report on the waiting times and patient populations for each English Gender Identity Clinic. This information is gathered as a result of Freedom of Information Requests.
 

4.2 The average waiting time for first appointments for the period February - April 2015 for each clinic was 52 weeks (Charing Cross), 17 weeks (The Laurels), 63 weeks (Leeds), 11 weeks (Northamptonshire), 35 weeks (Nottingham), 33 weeks (Sheffield). During this time Newcastle did not take on any new patients who did not bypass the waiting list[2].

4.3 These waiting times refer to those who have just reached the end of the list. This is not an indication of how long you will have to wait if you have been referred. Typically our members report an average overall waiting time of between 1-4 years, depending on GP and GIC. We have supported service users who have had to wait upwards of 7 years from when they first present to their GP asking for a referral to when they receive treatment. 

4.4 Our service users report that the estimated waiting time for their next appointment given by their GIC is frequently extended at late notice. A significant proportion of our service users also report a lack of confirmations.

4.5 We are aware that as the general public becomes more aware of trans issues, a higher proportion of trans people are coming out and seeking treatment. This has led to a significant long-term increase in demand for gender identity services.

4.6 We recommend:

a)    That GICs publish their current waiting times on their websites at quarterly intervals. Patients should not have to find out this information via FOI requests. Given that UK Trans Info routinely carry out FOI requests on this information it would be easier for all involved if this information was made available as a matter of course.

b)    Patients have a right to a confirmation that a referral has been received, and prompt updates if the time until treatments or appointments change. At current levels of staffing, GIC administrative staff are not able to cope with the high workloads. As such, more funding should be provided to bring more admin staff online to ensure clear communication between GICs and patients. GICs should also implement a review of communication processes to see where they can be improved.

c)    We believe that capacity can only be increased through an increase in funding and staffing levels along the lines our recommendations in section 2.

d)    We note that GICs currently operate an 8 week turnaround for responding to complaints regarding the 18 week standard. We recommend implementing a fast-track complaints service for those issues which require a quick turnaround.

5. Mental health impacts of poor service

5.1 The process of coming out, seeking out treatment, and undergoing transition related treatment is a stressful process for many trans patients. We also know that living with Gender Dysphoria and the stresses of living in a transphobic society can have a significant impact on trans people’s mental health[3].

5.2 According to the 2012 Trans Mental Health Study, 35% of trans people attempt suicide at least once, with 25% of trans people attempting again[4]. Other studies place the number of trans people attempting suicide closer to 40-50%[5]. We know that suicide attempts are more likely before transition (63%), and during transition (7%), than after transition (3%)[6]. To compare, various self-report studies place the proportion of the general population who have made a suicide attempt between 1-4%[7].

5.3 Our service users report a fear of accessing mental health services before or during their transitions, due to a widespread belief and anecdotal evidence that acknowledging a mental health problem may result in your treatment being delayed or denied. This is particularly the case for the non-binary community, who face increased scrutiny in gender clinics[8]. This may explain why trans people disproportionately presenting at crisis services (15% compared to <2% of the general population)[9].

5.4 Trans people are also more likely to misuse of alcohol and other drugs, with 23% of trans drug users reporting that their drug use was problematic or sometimes problematic and 7% reporting use of drug and alcohol related health services[10].

5.5 There is evidence to suggest that the provision of transition related healthcare can have a significant positive effect on trans patient’s mental health. According the Trans Mental Health Study of about 900 trans people; 45% used mental health services more before transition, 18% more during, and 0% used mental health service more post-transition[11].

5.6 We believe that a prompt and efficient provision of transition related healthcare will not only improve gender identity services, but also have a knock-on positive effect on trans peoples mental and physical health, and reduce the demand for mental health and drug and alcohol services.

5.7 An increased focus on early intervention for mental health services is necessary. Mental health services need to be able to be able to pinpoint where a patient may be effected by gender dysphoria, and proactively support them through any treatments they require.  We believe that this early intervention work will lead to long term improvement of trans patients mental health, alongside potentially significant cost savings.

5.7  We recommend:

a)      Training of GIC clinicians should be carried out which emphasizes that for many trans patients who present with mental health problems, their mental health problems are sometimes caused or exacerbated by their lack of access to transition related healthcare. As such, existence of mental health problems should not be seen as an impediment to treatment in cases.

b)     Trans mental health services should be focused on pre- and during- transition, as this is where trans people are more likely to need support services (although not exclusively, as there will be cases whereby post-transition trans people need to access these services). Services should focus on supporting and affirming trans people’s identities.

c)      It is important that mental health services are equipped with the tools to identify where a patient may be trans, in order to intervene early

6. Non-binary Healthcare

6.1 Our previous written evidence covered non-binary healthcare in depth. This section will just cover our recommendations. Non-binary people define outside of the gender binary (i.e. as neither a man nor a woman), and have specific healthcare concerns. They are particularly discriminated against within Gender Identity Services as current treatment protocols are geared up for dealing with binary patients only.

6.2 We recommend:

a)    There is an urgent need for greater training within Gender Identity Clinics on the needs of non-binary patients. Some clinicians “get it” whilst others are practically negligent. Cases of non-binary people being denied treatment because of their identity are common.

b)    That an appropriate treatment pathway for non-binary patients is developed as a matter of urgency, so they can be added to the existing protocols and can be included within any future incarnations of the protocols governing trans healthcare.

c)    That this diagnosis is orientated towards a desire for treatment rather than a person’s identity, operating on an informed consent model which centres the patient’s healthcare needs flexibly without gatekeeping treatments based on identity.

7. Self Medication

7.1 Our previous written evidence covered the often unmonitored practice of HRT self-medication in depth. We believe this practice is a direct result of a number of factors including: long waiting times, discrimination against non-binary people and other minorities throughout the treatment pathway, and economic discrimination against trans people making private healthcare untenable for many.

7.2 We recommend:

a)    Bridging medication is whereby a GP can prescribe hormones without the instruction of a Gender Identity Clinic in a situation where their patient is self-medicating as a harm reduction measure. GPs should routinely offer bridging prescriptions to trans people who disclose that they are self medicating, as per the RCPsych Good Practice Guidelines for Adults with Gender Dysphoria[12].

b)    GPs should routinely offer appropriate blood tests and health checks to trans patients who disclose that they are self-medicating.

c)    GPs should be routinely trained in prescribing and monitoring HRT to trans people – until gender identity services are redesigned to fully meet the needs of all trans people, it is essential from a harm reduction perspective that all GPs must be confident in prescribing and monitoring cross sex hormones to trans patients who need them.

d)     Allow trans people to access endocrinology services at local hospitals in the interim. Each hospital has a substantial number of GP practices in its catchment, this would be a significant immediate improvement in access to transition related services in a patient’s local area.

e)    Greater funding to be allocated to trans healthcare in general in order to increase the capacity of GICs and reduce waiting lists, reducing the need for trans people to self-medicate.

8. Conclusions: moving towards the Informed Consent model of trans healthcare

8.1 The informed consent model of trans healthcare exists when a patient who is informed of the possible positive and negative consequences of treatment may choose to undergo said treatment of their own responsibility. It stands in contrast to the current model of trans healthcare whereby a patient must successfully jump through several diagnostic hoops in order to receive treatment. 

8.2 The informed consent model of trans healthcare is successfully adopted by several clinics in the United States[13], and is consistent with the current WPATH Standard of Care[14] . The main difference between the informed consent model is the emphasis it places on harm reduction and informed consent as the threshold for initiating treatment, whereas current practice emphasizes the role of mental health practitioners as gatekeepers and assessors an sets up an arbitrary number of meetings and steps which must be fulfilled before treatment can commence.

8.3 We believe that adopting the informed consent model of trans healthcare can address many of the concerns raised by trans patients, and is consistent with the recommendations we have made elsewhere in this report. It allows clinicians to be more flexible in their approach to healthcare provision, allowing less complicated cases to be processed quicker and so reduce waiting times. As a model which emphasizes consent to various treatment options, rather than a binary centred diagnostic model, it holds significant promise in improving the non-binary patient experience.

7 September 2015