A Fight for Life: waiting lists for trans health care are a life sentence

“Am I ever going to get help from the system?”

Transgender individuals are losing hope as they face a minimum of 5 years wait time to even be seen at an NHS Gender Dysphoria Clinic (GDC) in the UK. Erin, Sophie, Jakub and Kitty are sharing their experiences of navigating these struggles and how self-medicating is becoming the only salvation from the waiting lists.

“The NHS Constitutionn sets out that patients should wait no longer than 18 weeks from GP referral to treatment”

There are a lot of reasons as to why trans individuals seek to get a gender dysphoria diagnosis. It is important to note that a diagnosis is not needed for one to be trans. However, the access to restricted treatments such as hormone therapy, surgery and gender recognition certificates are only available when a specialist has made a medical diagnosis.

The road to get a diagnosis starts with a referral either from a general practitioner (GP) or a self referral to GDC. According to Gender Construction Kit, there are 9 services in England and 17 total in the UK with variable service restrictions regarding transfers and age. Waiting list times are an average of 5 years. Exeter GDC is reported to have a waiting list of 8 years to be seen for the initial assessment. After initial assessment, a specialist medical team will investigate over an undefined period of time whereupon a diagnosis might be given. It is only with a diagnosis that a patient can access restricted treatment like hormone therapy with an additional wait of about 1 year until the patient can start hormone therapy.

Transgender people are desperate to access this care and the reality is that the options are limited as private gender healthcare is something not many can afford. Erin and Sophie, who have for a long time been facing the consequences of the system, think that waiting lists are prohibitive and criminal. Sophie, who was referred to Exeter GDC in spring of 2020 is still waiting for her initial assessment meeting. It has been over 4 years. She says, “It was crushing, am I ever going to get help from the system. That's when I started searching for other ways of transitioning.” For the past 3 years, Sophie has been self-medicating her hormone replacement therapy (HRT). To be self-medicating means acquiring and administering hormones without a prescription or medical supervision from a registered medical professional. Referred to as ‘DIY treatment’ within the trans community, this is a salvation for many who just like Sophie and Erin see a greater danger if they were to not self-medicate during their wait.
Self-medicating and going for private care are not a replacement for the NHS free service but more a temporary way to wait out the system. It is the emotional duress and uncertainty that comes with waiting that motivates trans people to turn to those two alternatives. “I don’t know when I will get an appointment,” Sophie said.

With any form of hormone treatment, blood tests are a mandatory requirement. Such tests are the only way to measure that hormone levels are good and that no complications are harming the patient’s health. A blood test is advised to be done every 3 months and requires a GP referral. According to the Cleveland Clinic, having even slightly too much or too little many hormones can cause major changes to your body and lead to conditions that require treatment.

Sophie recalls, “I went through four different GPs and none of them would issue blood tests or bridging prescriptions. I feel like doctors are not educated enough in trans care so they choose not to help rather than to learn and try to help.” When she got lucky with her fifth GP who would agree to issue blood tests, she was more educated on the requirements than the GP. Knowing exactly what tests to get, Sophie told her GP to measure oestrogen, testosterone, prolactin, dihydrotestosterone, SHPG, FSH and LH. She also needed to determine if a full blood count was needed. Beyond that, Sophie said, “The GP did not help to read the results on the paper so I had to make sense of it myself, they couldn’t advise on anything.”

“I had to become an expert myself”

When Erin’s GP found out that she was self-medicating and trying to get her blood tests she was treated with harmful carelessness. “The GP said, ‘we can’t help you’. And from that point, not only did they refuse to do blood tests. They refused me all forms of health care.” Erin recounted.

According to The NHS Constitution, patients should wait no longer than 18 weeks from GP referral to treatment. The reality is, Sophie protests, “We don't get to be seen within 18 weeks, we are lucky to be seen within 18 years, I don't know if I am ever going to be seen by a gender identity clinic.”

“I had to become an expert myself”

Kitty, who uses she/they pronouns, is transgender and identifies as a demigirl. She describes herself to be on the feminine side of the gender spectrum, but not completely female and not completely gender neutral.

She has always felt uncomfortable with gender stereotypes. It was at the start of puberty around age 12 when they started to experience a negative and uncomfortable feeling within themselves. It was also around that time she had the courage to come out to an online friend. Coming out was a process which evoked a mix of feelings. Kitty recalls, “I was happy to finally realise that this is what is going on but at the same time I was really really sad because I realised or rather felt that I was stuck in the body I was given.”

Kitty, who is from Sweden but lives and studies in England since 2022, referred herself to a Swedish gender clinic in January of 2019. At that time, she never could have expected the long journey and struggles of events that would unfold with her attempts to access healthcare. When recounting the events she said, “It has been so long now that it is hard to remember exactly.”
Kitty explains, That the gender clinic she was going to was very strict on the binary and you had to identify as either as transgender female or as transgender male. She felt like she had to be careful so they didn't get the wrong idea as they could easily then deny further health care. There are immediate diagnoses that they can give out specifically to teenagers but they did not ask or bring that up with Kitty, instead she found out about those a few years later. Kitty says, “They could have prescribed me hormone blockers from the beginning, but they didn't and that made me feel terrible that I had to experience male puberty longer and longer. And it could have been prevented.”

For 4 years and 7 months, Kitty was left with the uncertainty if she was going to receive the right diagnosis of gender dysphoria and have access to HRT. Kitty remembers, “The gender clinic I was going to was very strict on the binary. You had to be either female or male. Felt like I had to be careful so they didn't get the wrong idea, but also so I could get the healthcare that I needed.” To put into perspective, she was assessed by gender clinicians to measure if she met the criteria of being “trans enough”.

Now attending university in England, she is in a limbo situation after receiving a diagnosis from the Swedish health system. “It is very difficult having two healthcare systems work [with] each other. There is no official way to do it,” Kitty says. Despite this official diagnosis from a public health service, she is still searching for ways to access HRT to self-medicate.
Kitty has been forced to create her own coping mechanisms to live with this immense depression and anxiety. She has developed an extensive routine, which starts with trying to convince herself to go outside. Shaving is a time consuming routine which she does almost daily. From this routine, her skin gets irritated and therefore she has to use multiple facial scrubs and moisturisers to keep it healthy. To access all the stubble, she meticulously shaves against the hair growth. That way she gets the best result.

“The biggest aspect I think is my self image, not being able to have the body I want, and not having access to the health carethat would het me that body.”

The waiting has affected Kitty’s mental and physical health. She often avoids eating because going to the kitchen is a battle with anxiety. Experiencing downhill periods where it is hard to take care of herself, she describes her life as, “controlled by the mental aspect.” She describes repeated low points which happen 1 - 2 times a year, where she starts to contemplate ending her life. Kitty feels at times it is, “easier not to be alive than to deal with it…especially when you feel like you are not getting anywhere, you feel powerless and trapped, then suicide becomes a lot more appealing than it would normaly be.”

Kitty describes how her family and friends give her the strength to focus on the positives and the in-between moments of doing what she loves and being with those closest to her. She also finds writing poetry and making playlists to be a way to express intense feelings in a way that is not destructive.

“I didn't know where to look for support.”

It was in year 6 at the age of 10 when Jakub realised that he wanted to identify as a boy. At that time he did not know what transgender was. He remembers the moment we came out to his mother later on: “I was at home laying on the floor when she came by asking if I was okay and I just decided to tell her.” It was from that point he knew that it meant he was himself to the world and that they, meaning the world and the people around him, could figure out the rest themselves.

Jakub received support and therapy from CAMHS (Child and Adolescent Mental Health Service): “They helped me with everything. I didn’t have to do much until I became an adult, they helped me with appointments and such until then.” CAMHS provided both stability and a place to talk about gender related topics. He entered the NHS waiting system in 2018 when he was still going to CAMHS. However, as soon as he turned 18 CAMHS no longer provided Jakub with support.

Losing support from CAMHS negatively impacted Jakub's life. He recalls, “In the first few years after I stopped going to CAMHS my mental health was the worst it had ever been in my life and I didn’t know where to look for support.” Battling serious mental health issues and self-harm, Jakub often contemplated suicide and at one time he needed hospital care. Not wanting to hurt his family and friends, the people closest to him also got him through the toughest times.

Jakub waited around 4 years for testosterone. After his first face to face consultation he had to wait another 9 months before eventually being put on testosterone. Then, waiting 18 months before a video call appointment discussing top surgery, when he was told it would have to be a year before he could get an appointment with a surgeon to discuss surgery.

“If I started hormone therapy earlier I think it would have eased a lot of pain. I have a lot of self-harm scars now, there would have been a lot less.”

“As of March 2024 the person at the top of the waiting list for their initial assessment appointment has waited 70 months (5 years and 10 months) for an appointment and is currently still awaiting appointment allocation.”

- NHS

By: Eddie Stenstrom 2024.