Trans health needs more and better services: increasing capacity, expertise, and integration

Redesigning services

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.”

How much a risk cohort such as this costs the system needs determining, she adds, in terms of use of ambulance services, emergency departments, hospital admissions, and the justice system. This knowledge would drive innovation and justify investment in services. “There are all kinds of costs accrued … because people’s needs are not being met.”

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.