Trans health needs more and better services: increasing capacity, expertise, and integrationBMJ 2018; 362 doi: https://doi.org/10.1136/bmj.k3371 (Published 08 August 2018) Cite this as: BMJ 2018;362:k3371
- Ingrid Torjesen, freelance journalist, London, UK
“No other specialised service has seen this growth, nowhere near it,” says James Palmer, medical director for specialised services at NHS England. He told the Westminster Social Policy Forum in London in June that a 240% increase in referrals to gender dysphoria clinics over the past five years means “there is absolutely not sufficient capacity in the system … There are currently around 7500 adults waiting for a first appointment.”
This is not a funding issue, Palmer added. Services received a 50% boost a couple of years ago, which had “limited impact.”
The problem is workforce: there are not enough staff in specialised clinics, and general practitioners feel ill equipped to deal with questions about gender. For example, many transgender patients require hormone therapy for life, which some GPs are reluctant to prescribe because the drugs must be used off-label; some trans people therefore decide to self prescribe and buy the drugs through the internet.
A lack of specialists has led to a spike in self medicating and mental health crises, says Jack Doyle, press officer and advocacy coordinator for Action for Trans Health, the largest UK based campaign for trans healthcare reform and support. “I know four trans people who have attempted or died by suicide in the past year while waiting for NHS care.” He adds that a lot of trans people are forced to seek out private options in the UK and abroad because of the rising waiting times.
A report on transgender equality published by the House of Commons Women and Equalities Committee in January 20161 found “serious deficiencies in the quality and capacity of NHS gender identity services” and was concerned by “the apparent lack of any concrete plans to address the lack of specialist clinicians in this field.”
Now, NHS England is working with royal colleges on a training programme and accreditation for staff in specialised clinics, and is midway through a review of gender dysphoria services, which Palmer is in charge of.
In July 2017 proposals for redesigning gender identity services for adults were put out for consultation,2 and an analysis of the responses to this was published in March.3 NHS England is updating its proposals, with the aim of finalising specifications for gender dysphoria clinics and surgical services so that they can be in place from April 2019.
Patients with gender dysphoria display persistent concerns about their gender identity, which may be so intense that they are the most important aspect of their life. “We have no plans to extend access to NHS services to gender variant individuals who do not have a diagnosis of gender dysphoria,” Palmer emphasises.
To ensure gender dysphoria services have “real and visible” national leadership, “one or two lead providers will be procured to manage the gender dysphoria clinics as a whole and link them all into a single national network,” Palmer says. “They will performance manage the clinics with a focus on quality standards, reporting, and communication.”
Referrals to a specialised clinic must currently be made by a GP or another health professional—and some commissioning groups insist that patients are referred to psychosexual health services first—–but, under the proposals for redesign of gender dysphoria services, anyone registered with a GP will be able to self refer.
People with a diagnosis of gender dysphoria are potentially eligible for treatments on the NHS, including surgery such as genital reconstruction and mastectomy for trans men. The Department of Health and Social Care has asked NHS England to look at whether other surgical procedures, including breast enlargement, facial hair removal, and reversal of genital surgery, should be made available on the NHS.
Patient reported outcomes and experience will be measured to drive up the quality of surgical services, Palmer says. “We want patients who decide on surgery to have real choice from an approved list of surgeons who we are confident have the experience and expertise, so we want to implement a national referral management service informed by the data on the outcomes provided by previous patients.”
Children and young people
The average age of patients referred to gender dysphoria services is falling, meaning this adult specialised service is increasingly becoming a service for children and young adults. In 2014, the average age of patients presenting at the gender dysphoria clinic in Nottingham was just under 30—now it’s just over 20.
The fact that people are presenting earlier should be seen as “a good thing,” Palmer says, because they can be supported through their uncertainties and whatever pathway they ultimately choose. People who access NHS support at a younger age are less likely to pursue gender reaffirming surgery, with around 20% of adults and 40% of children and adolescents deciding against it, he says.
Polly Carmichael, a clinical psychologist and clinical director of the gender identity development service at the Tavistock and Portman NHS Foundation Trust, which has two main centres in London and Leeds and outreach clinics in locations including Cardiff and Exeter, adds that children referred before puberty are less likely than adults to elect to go forward for physical treatment later. Around half of those referred in adolescence opt for it.
The waiting time for the Tavistock and Portman gender identity services is currently 14-18 months from referral.4 “Having a waiting list is incredibly difficult,” Carmichael told the Westminster Social Policy Forum. “We realise the amount of distress for young people and their families while they sit on the waiting list, and offering telephone support really isn’t enough.”
Local focus needed
Some care could and should be provided locally, such as exploration of gender questions for young people, alongside psychosocial and mental health support, Carmichael says. “We are working with local Child and Adolescent Mental Health Services (CAMHS) so that they can do some of the exploration work, so hopefully going forward fewer young people will need to be referred to specialist clinics.”
However, one parent questions whether CAMHS, itself under pressure, has the capacity for this work, “let alone the training or specialism.” She says: “Any plan to use existing services that are in place to somehow mop up the huge number of children and young people waiting for treatment is cloud cuckoo land, I’m afraid.”
Palmer says that NHS England will need to consider different models for the delivery of gender dysphoria services for children and young people, and how primary care teams can be commissioned to deliver care in conjunction with specialised clinics and children’s services.
“We must build a locally delivered service closer to the community, closer to primary care, so children and adults can seek expert guidance much earlier in their journey in thinking about their gender.
“We are working on potential models of trans health services for testing and we will be in a position to share these ideas in the autumn.”
Innovation for a risk cohort
There has got to be a period of innovation, Palmer says, ‘‘because we are not clear what a model that is more primary care focused should look like. We want it to be the contact where the pathway starts, so that people don’t feel that the pathway only starts when you get into a gender dysphoria clinic.”
People with gender dysphoria have higher rates of suicide and self harm; higher smoking rates; may self medicate with hormone treatments, alcohol, and drugs; and are at greater risk of long term conditions such as chronic obstructive pulmonary disease, diabetes, and heart disease, says Caroline Dollery, chair of the Mid Essex Clinical Commissioning Group. “All of this linked with depression gives very poor physical outcomes, so this group of people could actually have a shorter life span unless we think proactively. They are a risk cohort,” she told the forum. “That usually gets commissioners’ attention.”
When patients are treated by specialised services, there must also be links back to primary care, Dollery emphasises, to ensure access to appropriate screening, basic management of long term conditions, and general health and prevention services.
Palmer’s aspiration is for every area to have a local trans health service linked to gender dysphoria clinics and surgical services. He acknowledges that greater availability of higher quality services may increase demand for services still further.
Transgender people stress the importance of proper language that respects their identity. The following are terms in general use, but it is important to be sensitive to the individual and use the terms they prefer
Gender has historically been used to refer to psychological, behavioural, and sociological characteristics, and their categorisation by society as “masculine” or “feminine”
Sex has historically been used to refer to biological characteristics of male and female
Gender dysphoria refers to the incongruity between people’s sense of themselves and the sexual characteristics they were born with. There may be a sense of being female although born male (or vice versa), or a sense of mixed gender or neutrality
Trans woman is a woman who was assigned male at birth
Trans man is a man who was assigned female at birth
Non-binary transgender refers to someone who does not exclusively identify as man or woman, masculine or feminine, male or female
Patient perspective: Navigating NHS gender dysphoria services
Jake Dawson, Prudhoe, Northumberland
I've always known that I wasn't “normal.” When I was about 14 I heard about the term transgender, and it seemed to fit everything. I didn't come out straight away because I was afraid of my parents and knew I would have to wait until I was 18, so I didn't think there was any point. I wish I had, now I know how long the waiting lists are.
Before I came out to my family at 18, I came out to my GP. My GP wasn't sure how to act; he admitted that he didn't really know what he was doing but said that he would look into it. I went back to the same doctor about a month later, by which point I'd come out to my family and was ready to move. The doctor said that he still hadn't looked into it, so referred me to a psychiatrist as I deal with mental health issues anyway, and later phoned and gave me details of the Mermaids [charity] forum.
The psychiatrist I was referred to last December never got back to me, so I was left for quite a few months on my own until out of nowhere I got a phone call from my GP again. He asked me to come in the next day to take measurements. He referred me to a gender clinic in London and helped me with advice on changing my name legally.
I've had no contact from the gender clinic, psychiatrist, or my GP since. It's been about five months which, when added to the four or five years I had already waited to come out, is a very long time. All I’m waiting for at the moment is an appointment to assess me. I'm so desperate to start hormones and get both top and bottom surgery, but I know that it's going to be years before I get even close to any of that happening.
This affects me and my family daily. My dysphoria often makes me fall into deep spells of anxiety and depression, which have stopped me from maintaining a job. I just close myself off in my bedroom and don’t want to be seen by anybody—not even myself, as I find my body repulsive—and anybody misgendering me can set me up for an awful day.
I'm not entirely sure how long my referral for the assessment will be, but I know that it’s still over a year and knowing that really disheartens me. I even have times when I'm not sure I’ll be here in the future as I’m trapped in this body and it’s really draining mentally.
Competing interests: We have read and understood BMJ policy on declaration of interests and have no relevant interests to declare.
Provenance and peer review: Commissioned; externally peer reviewed.