Transgender people wait years for help in clinic system at ‘breaking point’

Imagine not feeling comfortable in your own skin for as long as you can remember. The toll on your mental and physical health of a life peppered with bullying and snide remarks due to you not fitting in to the gender stereotypes. You reach a decision to transition, and are filled with the hope of getting the help you need to change gender. Only to find out you have to wait a year, maybe two, to start your treatment.

Think a second on what that actually means, that stretch of time each hour dragging into days and weeks. What does your mind go through, what does your life look like, how do you work, how do you step outside?

This is the experience of thousands of trans people in the UK who, due to skyrocketing waiting times for NHS services, face shocking delays for treatments ranging from gender reassignment surgery to basic services such as hormone therapy and mental health support.

In the UK, services providing consultation, prescriptions and referrals for issues of Gender Identity are provided through Gender Identity Clinics (GIC) of which in the North there are three based in Sheffield, Leeds and Newcastle. Anyone needing GIC services in Greater Manchester has to travel to the previously mentioned clinics, as there are none in the region.

The underfunded and under staffed services are being pushed to breaking point, by increasing demand. To attend a GIC the maximum waiting time after a referral should be 18 weeks but actual times even for initial appointments at GICs are in the scale of years not weeks.

Waiting times for Leeds, Sheffield and Newcastle are reported to be more than a year while Midlands services in Nottingham and Northampton have waits of 24 and 32 months respectively.

The Parliamentary Women and Equalities Committee reported last October that NHS transgender services were “at breaking point,” finding “stark inequalities in [health] outcomes between LGBT groups and the wider population” and “a perception that the healthcare needs of LGBT people are deemed ‘less important’.” NHS England ‘pledged’ to improve the situation in 2016 but waiting times have continued to climb.

One proposed solution is to open more Gender Health Services to spread out demand on oversubscribed clinics and provide more localised services. But funding for this is not forthcoming from government budgets. NHS England providers recorded huge funding deficits totalling £931 million last year, while almost 100,000 NHS England staff posts remain unfilled, the likelihood of providing fully staffed and effective new services is slim. Whatever can be done will have to be within shrinking budgets and human resources.

Meanwhile for people trying to get treatment, working their way through a creaking and complex system, the experience continues to be measured in years waiting for a single appointment.

Ashleigh Talbot, a trans rights activist, moved to Manchester to help with her transition. Beginning by changing her name in 2012, she contacted a GP and was directed to a Community Mental Health Team to a diagnosis and referral, after finding out that northern clinics such as Leeds had waiting times of 3 years she decided to go to Charing Cross GIC in London. Having waited a year for an appointment with the Mental Health Team she waited another 18 months for her first appointment in London.

A key factor in qualifying for treatment is the ‘Real Life Test’. Presenting as your chosen gender and changing your name legally are often prerequisites for advancing your case for treatment. A case that has to be made before a first appointment which acts almost as an audition, and therefore it’s often done without mental health support or medical treatment to make this easier. Ashleigh says:

“They will give you nothing until you have demonstrated you have done the “Real Life Test” …. you’re at the Gender Clinic [1st appointment], but because you’re still on you’re RLT, you’ve not had a procedure no hormones or laser surgery, you are not ‘passing’ [as your chosen gender] which is a phrase that I hate. It’s immediately obvious to anyone who claps eyes on you that you are trans, and that causes verbal abuse.

“We get attacked, we get things thrown at us. These thing have happened to me, from personal experience I’ve literally had bricks thrown at my head by groups of lads who didn’t like the way I looked. That stresses you out, this is very difficult and I need some support with my mental health.”

While the RLT may fulfill a purpose by giving a person time to test out their new identity, without any support or supporting treatments it leaves many people vulnerable and conspicuously unable to fit into the rigid aesthetic categories wider society demands. The UK has shocking levels of anti-trans violence with 41% of trans people being victims of a hate crime or discrimination because of their gender.

With such long waits between appointments some people adopt a sense of pragmatism as a way of working a way through an elongated and convoluted system.

Row Seward originally from Northampton began her transition in 2014 while studying Fashion in London. After completing her first year she moved to Manchester and is currently finishing her degree. She was initially referred to the GIC at Kings Cross and waited over a year for her first appointment there. She read up on the process and worked on the requirements to get a second referral, changing her name legally and getting letters written by co-workers and GPs to support her.

“When I went to my first appointment it was, ‘I’ve done my homework, don’t mess me around’. I went in there, going ‘I’m gonna play your game’ you want the binary you want the male or female you don’t want the in-between.”

While trans people often transition decidedly from one gender to another this is not always the case and many identify as non-binary, a term used to highlight the desire not to identify with a single gender. But assessments at GICs are often not considerate of this and many trans people feel pressured to pursue a strict transformation from one gender to another.

Row described how the first GIC appointment feels like an interview. “They ask you about sex, are you having sex, ask about your savings, are you working, your relationship with your parents, are you with someone are you not, things that seem really weird.”

These questions are there to clinically evaluate your mental state. To check how serious you are, and determine what is the best treatment here for this patient. Row says the result is ultimately anticlimactic, you get a referral to another appointment, the same wait again maybe more, maybe a bit less but still no treatment and almost no support.

“You’ve got the moment it’s clicked, you’re somewhat aligned mentally. To then to go to someone meant to help you and they put a huge chunk of a wait time [before next appointment], you’re then stuck with nowhere to go. To wait that long to get there, I was presenting as female all that time, but nothing was changing for me.

“A simple thing like losing your facial hair would help so much. It’s horrible what you mind goes through, knowing that there’s nothing you can do to help yourself. Obviously you can buy hormones online, which I thought about many a times. It’s dangerous and I don’t think they realise how making people wait that long means they consider really dangerous things.”

Despite regulation of prescription hormone suppliers there are still widespread opportunities to buy through online pharmacies and suppliers. Popular online forums like r/TransDIY highlight how without support, people can take treatment into their own hands. With waits so long many trans peoples experience of Hormone Replacement Therapy begins, or is sometimes totally self-medicated. There are no generally recommended dosages, each person’s requirement can differ significantly and so the margin for complications and overdosing is significant. Imbalances can cause very high or low blood pressure, which can increase the likelihood of blood clots while many drugs such as Spironolactone, used to block testosterone, taken long term can have serious side effects.

Asking Row what the biggest issue was facing people seeking support to transition she replied exasperated. “Oh my god please educate your GPs!” For many trans people their first point of contact for any issue is their local GP service, consequently there are no end of stories from transgender people about ignorant GP’s.

Row went on to say, “I’ve had some hilarious scenes at GPs, people get gender mixed up with sexuality, I remember someone brought that up and I was like ‘it’s none of your business, I’ve just come to you for some antibiotics’”

Alongside issues with misgendering and offensive personal intrusion there is often simply a general lack of knowledge in trans health.

“At least have a piggy bank of some sort of knowledge to how it works, for example the average oestrogen level should be at 600-800, that’s a simple fact someone should know. I’ve retained that fact and I never retain facts, but I’m going in (she imitates GP voice) ‘is it supposed to be this level?’. Like how do you not know, have you not read my notes?” Said Row.

Within the education of GPs and NHS staff Gender identity is considered a specialty field meaning training in the medical standards of trans health among many staff is often superficial or lacking entirely. Among frontline staff the effect of this can alienate trans people who not only are regularly misgendered and made uncomfortable by unprofessional behaviour, but also unnecessarily forced to become experts in their own healthcare.

In the Stonewall report ‘Unhealthy Attitudes‘ a common sentiment displayed by staff is that LGBT patients are ‘treated the same as other patients regardless of sexual orientation’, while this could be well meant it misses the point. A person’s identity, family life, and orientation are vital in giving them the best quality of care, no one size fits all and the NHS has been increasingly guilty of medicalising peoples treatment.  . This indifferent attitude to gender may be why 20 per cent of trans people witness discriminatory or negative marks against LGBT people by healthcare staff.

Laurie William, a Manchester-based performance artist, began her transition last year. and having heard many friends’ difficult experiences with waiting times she decided to go private. Nevertheless the process had to go through her NHS GP:

“I got a letter from the private doctor illustrating the impact of gender dysphoria and stating my required needs. To which my GP responded by misgendering me multiple times. I was also denied the ability to change my pronoun at my GP until I had “proof” which is actually incorrect, so I changed GPs. A very long process when all GPs in my area have month long waiting lists. … You’d think a GP would have the common sense to correctly gender a trans person. But they didn’t.”

Disclosing personal issues of physical or mental health is an act of trust, you have to trust that the recipient understands its weight and importance to you. But too many trans-people’s experience of the NHS is marred by inadequate and often patronising response.

“You have to rely on your local GP and chemist to admit the prescribed drugs, and although I am still waiting for mine, I have heard countless accounts from trans friends of their hormones not being available, and having to go time without until after much discussion the GP and chemist supply trans people with what they need, despite [them] having the lifelong prescription. … These services save lives – they need to be taken more seriously. There needs to be more funding and action taken to ensure the mental safety of trans people.” Said Laurie.

All NHS services need to be safe and effective places to get treatment as a trans person. So step change needs to be made in the education and training of NHS staff, the most effective efforts of which are coming from the LGBT community itself.

Pride In Practice (PIP), run by the LGBT Foundation, provides training and educational resources to GP Practices and other primary care services through wide ranging program dealing not only with issues of transphobia but also extending access to PrEP (a drug combination prescribed to prevent HIV-negative people from contracting the virus), tackling homophobia and providing a more inclusive environment. Crucially its program is informed by the experiences of patients and involves the work of Community Leader volunteers who work with the wider community to identify issues, communicate these and then provide training and advice based upon them.

Ashleigh is one such volunteer. The struggle to modernise attitudes in the NHS, now long since fractured and suffering from Conservative ‘reform’, has had piecemeal results says Ashleigh:

“You encounter resistance in strange places. For instance in one remote county GP surgery they had extensive provisions already running … then you might go to another in a city somewhere and its markedly different, one time when Pride in Practice went out to teach a GP practice full of young newly qualified GPs one of them came out stating ‘we can probably solve a lot of these health issues by encouraging more gay men to kill themselves’ an actual thing that was actually said in an actual meeting.”

“That’s why this work needs to take place, because if that’s what your doctor is coming out with how an earth are you going to feel safe talking to them about a transition or a sexual health issue.”

Pride in Practice has had some serious success, having been rolled out to all of Greater Manchester in 2017 it now has a 15-month pilot running in Greater London from April this year. There are many other regions across the UK who would also benefit from this innovative scheme.

The Women & Equalities Committee published evidence highlighting the issues of waiting times at GICs and education in NHS primary care. Their conclusion was that that very little is being done to improve the situation.

While government prevaricates, the right-wing press runs smear campaigns, accusing GICs of ‘transgender experiments’. The Equalities committee head Maria Miller can extend herself to a condemnation of the current situation, but nothing more. As with so many other crises they are swept under the Brexit carpet.

While progress may be slow there is an opportunity, through programs like Pride in Practice, to democratise healthcare challenging both deep seated prejudices and archaic notions of gender.

In Manchester there are plans for a two year pilot trans health service. While not a full GIC its aims will be to provide support for people experiencing Gender dysphoria and support references to other clinics for further treatment. The first dedicated trans health service would be a long awaited improvement, especially for a city with one of the largest and diverse LGBT communities in the North. But when so many transgender patients’ experience of healthcare is alienating and difficult, the NHS also needs to listen and learn from these criticisms.

Their needs to be greater acceptance of difference by the NHS says Row, “we are in a very modern society where the binaries are slowly going to drift away and that people can be fluid between them. It needs to be challenged for those who live on the binaries, but we also need some sort of system for people who don’t want to be in the binaries.”

Much of Trans-health is constructed with a cisgender gaze, prioritising what makes a patient more able to appear as a defined binary gender. This attempt to medicalise and codify what many trans people feel is at its core a personal decision is seen by many as seriously flawed, and somewhat transphobic.

Ashleigh notes, “there’s so much of the trans healthcare question developed to keep cis people happy, to stop them raising arms about it rather than about what’s gonna have the best quality of life for the trans community. Any healthcare system that doesn’t take account of that or build that into its structure, it won’t be any better.”

If we are looking to restore the NHS to a full operation it can’t simply be an issue of turning the money tap back on. Healthcare needs to be responsive and accountable to its patients. Presenting not just a feedback form but offering a forum in which people can come forward and be heard.

 

Nicholas Prescott           – transgender

To find out more about the transgender issues raised in this article try the LGBT Foundation or The Proud Trust