Written submission from Action for Trans Health London (HSC0100)
In the years 2015-2019, the crisis within NHS GICs has become impossible to ignore. The average wait time for an initial appointment at an NHS GIC (known as Referral-To-Treatment time, or RTT) has risen from 30 weeks in 2015 to 93 weeks as of October 2018: an average increase of more than 300% in three years, according to figures reported by GICs[1]. One GIC’s average wait time in 2018 was more than eleven times what it was three years earlier in 2015. All of these averages, both in 2015 and 2018, are substantially above the 18-week standard of RTT mandated by the NHS constitution as the right of every patient, and only continue to rise.
Self-medication is a common practice among transgender people, whereby patients take unprescribed HRT (Hormone Replacement Therapy) from unregulated and often unlicensed providers, often buying them over the internet. These medications represent a risk to patients’ health, as does a lack of medical oversight. Despite the risks, according to our research, 25.1% of patients report self-medicating with hormones while waiting for an appointment at an NHS GIC.
This crisis was recognised by the Women and Equalities Committee in 2015, who determined that immediate action was necessary. No such action has been taken, causing the crisis to worsen. While increased demand, lack of funding and understaffing are contributing factors, the situation cannot be remedied without addressing the root of the issue: a system that is bloated with layers of unnecessary and unethical gatekeeping, which takes years to process a single patient, causing a backlog of patients waiting to access treatment.
In response to this crisis, Action for Trans Health created a survey to gather data on the experiences of transgender patients seeking medical transition on the NHS. The experiences of the survey’s 773 respondents, as related to the trans people who created this survey, are the source for much of the data in this report.
GPs are neglecting the needs of transgender patients.
Trans patients experience widespread difficulty in obtaining GIC referrals from GPs, as GPs are often poorly educated on trans-related healthcare, and sometimes show transphobic tendencies. The recent change allowing self-referral is positive, but does not solve the problem outright, as GPs are often resistant to filling prescriptions from GICs, and sometimes refuse to do so entirely.
Trans patients regularly experience discrimination and transphobia from their GPs (see case studies 44, 53, 463, 561). One woman was delayed 13 years by her GP prior to referral. In Stonewall’s LGBT in Britain Trans Report (2018), 41% of trans people interviewed reported that healthcare staff lacked understanding of specific trans health needs. Of those seeking medical transition, 24% reported fear of discrimination from a service provider as the main reason they have not yet initiated the process. Patients rely on GPs to fill GIC prescriptions even after referral. Nonetheless, 29% of patients report that their GP has refused to treat them for reasons relating to medical transition.
GPs are able to unilaterally provide bridging prescriptions to patients on GIC waiting lists, but seldom do so. According to our research, 76.7% of patients who asked their GPs for a bridging prescription were refused. In addition to the detrimental effect such refusals have on the patient, they also put a greater financial burden on the NHS - patients often require greater interventions as a result of untreated gender dysphoria, and the subsequent impact on their quality of life.
Wait times for gender affirming healthcare endanger patient’s lives and wellbeing.
Despite the stated commitments of the NHS to treat patients within 18 weeks of referral, 94.4% of patients report wait times greater than 18 weeks for a first appointment, with the majority waiting several years. In Freedom of Information requests, GICs report conflicting understandings of their commitments. The Northern Region Gender Dysphoria Service state that while they are subject to the 18-week standard, it is not enforced. Nottingham GIC claims that they are not subject to the 18-week standard, directly contradicting information from NHS England.
Wait times for GIC care risks endangering patients’ mental and physical health[2], and force them to put their lives on hold for years. Wait times are directly linked to increased rates of self-harm and suicide, suicidal ideation[3], and increases in gender dysphoria[4]. Patients also report high rates of self-medication as a direct consequence of wait times.
39.1% of patients report receiving private gender care while waiting for an appointment at an NHS GIC, indicating that the NHS is placing an unreasonable financial burden on a population which has the right to free and prompt NHS treatment. However, it is in the area of mental health that the most severe harm is found, with the majority of patients reporting that their mental health was adversely affected by wait times, and many reporting self-harm and suicidal ideation/behaviour[5].
The data demonstrates the positive effects of commencing treatment (specifically HRT) on patients[6]. Nonetheless, mental health issues are frequently cited as justification for delaying treatment, to the further detriment of patients’ mental health[7]. This often leads to many patients concealing mental health issues and not seeking treatment for them, despite the effect this inevitably has on their quality of life.
Wait times for GIC care contribute to both a greater ongoing level of gender dysphoria and higher costs for the NHS, as patients often require more interventions following longer wait times. These waiting times impact all areas of life. Patients report having to delay marriage (a result of the requirements for obtaining a Gender Recognition Certificate) and other major life events, which has a personal, financial and professional impact on patients. The cumulative effects of these problems place an unreasonable burden on transgender individuals, as seen in case studies such as no. 615.
GICs have a detrimental effect on patients’ quality of life.
Although the World Health Organisation no longer considers gender dysphoria a mental illness, the GIC system still assumes patients to be mentally ill. Patients are pathologised, presumed to lack the capacity to consent until they prove otherwise, and required to demonstrate to specialists their need for treatment over the course of multiple appointments.
This model results in a small number of highly specialised clinicians diagnosing and recommending treatment, and few new clinicians being trained. Allowing patients to make informed decisions about receiving treatment without emphasis on psychological assessment would allow a wider range of less specialised clinicians to offer gender-affirming care. Without a psychological assessment or other impediments to accessing HRT, clinics would be able to treat much greater numbers of patients.
Often referred to as a “gatekeeping” model of care, this restrictive model is often justified as preventing cases of mistaken transition or patient regret. However, over 63% of patients report that they considered medical transition for longer than a year before requesting a referral to a GIC, and 42.6% having considered it for two years or longer. At current wait times, they will have had an additional 21 months to consider the decision before arriving at a first appointment. Patients arriving at their first appointment typically have a clear idea of the treatment they want stemming from years of research and consideration, and discussion of medical transition in the trans community. The number of patients who regret transition or “detransition” is all but nonexistent, with a study by Nottingham GIC finding no patients who permanently detransitioned, and only three who had detransitioned temporarily. All three cited lack of family support as the reason, not uncertainty about their desire for medical transition, and all three later transitioned again.
Gender transition is a long and complicated process, and clinicians often deal only with a very small part of this. A systematic failure to manage the transition process overall contributes to unnecessary delays at every stage of the process – case study no. 44 shows delays leading to a total of 21 years over the course of transition. Services are plagued by huge numbers of administrative errors which take months to correct, and by cancellations, often at extremely short notice[8]. Patients find their treatment denied or delayed because of numerous and varied reasons, such as mental health conditions, family issues (see case study no. 286, where a patient was forced to come out to his grandmother, who had dementia and was unable to understand or remember), high BMI and neurodivergence, while reporting that not having begun treatment is a barrier to solving these issues. Patients report poor communication[9] and offensive terminology[10].
Patients further report humiliation and invasion of privacy from clinicians. They are asked intimate and somewhat intrusive questions about their sex lives, held to outdated and offensive stereotypes, and subjected to inappropriate interference in their family lives. There is no justification for GIC staff, who have minimal contact with patients, making these kinds of blunt-force interventions in their lives. Such requirements are based on clinician’s biased ideas of what transition should look like, rather than the actual needs of the patient. Neither are they within the GIC’s purview. Staff have little understanding of how coming out may affect a patient’s life, and have no right to make such decisions on their behalf.
The evidence is overwhelming that in trying to ‘protect’ patients from potential regret, the GIC system, while well-meaning, is causing considerable harm among a patient population who do not need the kind of extensive evaluation that is currently mandated.
August 2019