Shared care, prescribing and self-medication

Successful healthcare for many trans and gender diverse people can depend on GPs (General Practitioners), specialist services and healthcare providers working together. Shared Care Agreements (SCA) work on the principle that there is communication and collaboration between a GP and specialist gender services (NHS or private) to provide joint care for patients.

People talked about shared care and prescribing in the following ways:

  • Experiences of shared care with GPs
  • Experiences of shared care with private services
  • Prescribing and bridging hormones
  • Having blood tests
  • Self-medication

​Experiences of shared care with GPs

There were mixed experiences of shared care with GPs among people we talked to. Young people often relied on their GP’s understanding and acceptance of shared care in order to start hormone therapy. Sally explained that whilst being seen by the NHS gender identity services, ‘you get a shared care agreement, which is this booklet and it goes through what hormone replacement therapy is [and what is] involved [in terms of] longer-term care’. She said it includes ‘what the GP is expected to do and you know the blood testing regimen’.

Some people were grateful that their GPs were receptive and willing to do SCAs. Bay explained that their ‘private clinic needed [the GP] to agree to a Shared Care Agreement for me to switch my prescriptions from private to NHS and that was very smooth.’ They explained how their GP ‘sorted out my blood tests for me and taking them back to the clinic with the results.’

Erion talks about trying to convince his GP to have a shared care agreement with a private healthcare provider.

Age at interview 22

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Other people described being frustrated and upset when GPs were unsupportive and refused shared care. Jessica’s GP refused to comply with a SCA after she saw a private provider. The GP said ‘I don’t really want to support this [provider]… maybe you can go ahead with it, but I won’t support it on the NHS’. Henry said, ‘It’s been exhausting and I find that either you get a GP who’s point blank unsupportive, or a GP that’s supportive but is reluctant to actually be supportive… so supportive almost on a surface level, which is great, but then isn’t always willing to follow through with everything else that comes with that.’

Summer explains how she switched GPs according to who was happy working with a shared care agreement.

Age at interview 25

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Some young people were told that SCAs were unavailable due to the practice not having enough knowledge or information. June described how his GP said, ‘we’ve never had to deal with this before and we don’t know enough about it, it’s out of our remit’. Ari said they ‘wish that GPs knew a little bit more about shared care’. They said when GPs are ‘confused and unwilling to do shared care between them and the private clinic that prescribe the hormones [it] leads to a drop in that patient’s wellbeing’. They described it as both ‘time consuming and frustrating’ for the patient.

Henry shares how his GP told him we can’t prescribe you hormones, we’re not going to do that.

Age at interview 25

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Jay says that a change in his GP surgery policy pushed him to self-medicate.

Age at interview 23

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H says the guidelines for shared care are very clear. It’s a very simple process that’s been made to be very complex.

Age at interview 28

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Experiences of shared care with private services

People who were able to pay for private healthcare services relied on GP practices being willing to do a SCA. In these cases the GP would take advice from the private provider on issuing prescriptions for hormones and monitoring bloods. While some requests were granted by GPs, many were denied due to confusion over policy. The Royal College of General Practitioners has a statement on ‘The role of the GP in caring for gender-questioning and transgender patients’*.

Some young people found the process smooth and their practitioners helpful. Jacob was grateful for his supportive GP ‘she is absolutely incredible’. He said that his GP has ‘helped many trans women before and she’s helping me, she’s set up full shared care [agreement] for me, she’s done lots of referrals [and] been really quick to talk to people’.

Jack talks about a lack of consistency with shared care agreements at his GP surgery.

Age at interview 22

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Other experiences were mixed. Kat was told by her GP surgery that ‘they couldn’t do shared care with the private people I was with’. However, ‘they said the nurse [at the GP surgery] could do my injections for [hormone] blockers which was really helpful’. Kat thought the reason for this decision could be ‘because they weren’t fully comfortable providing that care’.

Alistair was told ‘after a conversation with [his GP surgery] they said they wouldn’t take over [the prescribing of testosterone] because it’s not in their policy guidelines’. The GP surgery insisted he had to wait the required time on the NHS waiting list. He said ‘luckily’ his private provider is able to write their own prescriptions. Summer said the process of shared care was ‘just all a bit of a faff’. She said ‘that’s what led me to self-medding the hormones from online because I just couldn’t be arsed with it.’

Evelyn shares how her GP surgery refused a shared care agreement which meant that she couldn’t proceed.

Age at interview 14

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Prescribing and bridging hormones

Due to lengthy gender clinic waiting lists, young people talked about making enquiries with their GPs about bridging prescriptions. Bridging prescriptions are the prescription of hormones before being seen by the NHS gender identity services and seen as a ‘holding and harm reduction strategy’ for patients who have chosen to self-medicate** (GMC, 2021). People talked about bridging prescriptions either prescribed under the guidance of a private gender specialist or asking the GP to take responsibility in prescribing and monitoring hormones themselves. The RCGP has set out guidance [see below].

Many said their GPs refused to engage with bridging prescriptions due to a lack of knowledge and training. June said he told his GP that he was self-medicating and introduced the possibility of a bridging prescription. He said, ‘[his GP] was really adamant that that wasn’t something that she could do or that was outside of her knowledge as a GP.’ Alistair was told by his GP that ‘it’s not in their policy to prescribe before I’ve been seen by [Gender Identity Clinic].

Cassie says she has never heard of anyone getting a bridging prescription’ in her area.

Age at interview 23

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Bridging prescriptions were described as a key point of frustration, specifically for young trans people going through puberty. Many young people described a lack of clear guidance and information for GPs on bridging prescriptions.

Jay said ‘I was meant to be starting bridging hormones before I get my appointment with the NHS and yeah, it didn’t go to plan ‘cos the practice that I’m with they actually decided to make a new policy.’ He said ‘They had a meeting about me essentially and all the doctors came together and said that it was too risky for them. I don’t really understand why. But yeah, they decided after that, they would make a new policy and that they wouldn’t prescribe bridging hormones to any trans patients after that.’

Max talks about the difference it made to him finding a GP who was willing to offer a bridging prescription.

Age at interview 25

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People also talked about their general experiences of being prescribed hormones. Some young people talked about delays between the NHS services and their GP which led to a delay in receiving their prescription. Declan said, ‘It was a bit annoying waiting for the gender clinic to communicate with my GP and then it took me asking my GP if a letter had come through for them to give me a prescription. [Sighs] so a lot of it is just me nagging the healthcare system trying to get what I want but I got it.’

H talks about trying to get a bridging prescription with his GP

Age at interview 28

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Having blood tests

The NHS and private service providers recommend regular blood testing while on hormone therapy (NHS, 2021). Young people had mixed experiences of getting blood tests. Tyra said ‘I had to go and get my bloods taken every three months’. Sally said ‘you get checked up, check your prolactin levels, check your estradiol levels, you check your liver function, and your testosterone levels’. One person stated ‘I’ve never had my bloods done… I don’t even know how to access [that].’ Kat said she ‘just walked into the hospital with a blood test form, they gave me a blood test, they sent it over to GP, and then I got my results back’. Sophie also used her ‘local hospital walk-in blood clinic’.

Many people talked about the benefit of having free local services that provided support for trans patients with hormone therapy. For example, this might be a clinic set up by a charity especially for trans and gender diverse people. M was able to get their testosterone injected at such a service. Summer and June said they got their ‘[blood] levels tested’ and ‘got those results’. June said it is ‘a really important service’.

A few young people described their frustration with their health professionals that refused healthcare support due to a lack of knowledge. Freya said ‘I’m not trying to say, I’m smarter than a doctor. But like for what is such a relatively simple thing, like you’re just trying to get your bloods to this level… It doesn’t take a rocket scientist’. A lack of knowledge in this area meant that self-medicating patients were at a risk. PJ said ‘I wish they knew more about being able to monitor your bloods, cos I’ve heard so many stories of trans guys not having their bloods regularly monitored and then that screws up their levels’.

Freya talks about opening up to her GP about DIYing’ and how they worked together to manage risk.

Age at interview 21

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Self-medication

Some young people who were unable to access hormones through the NHS or private care chose to self-medicate. For many trans and gender young people this was seen as a last resort. Cassie said, ‘I guarantee you none of the people I know who are self-medding, wanna be self-medding.’ She said ‘they’re not doing it out of choice.’ Jay said he ‘was in a really, really bad place mentally’ and the people around him recognised ‘it was something that I needed to do.’ Jay described it as ‘reclaiming my own transition’ and that ‘before that, I felt very hopeless.’ He said ‘I’m a lot happier now’. People accessed hormones for the purpose of self-medication in different ways.

Noelle says they got their hormones from an online pharmacy: it didn’t feel like I had a choice, my mental health would have just kept falling and falling.

Age at interview 23

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Young people described how they judged the risk of self-medication. PJ said ‘I knew that if I did [self-medicate] that I could get kicked off the waiting list’ which he said was ‘too big of a risk’. H stated ‘when I was self-medicating, my mind was at ease for a bit but at the same time I had the anxiety around it’. He said he would ask himself “Am I doing this right? What if I die or something?” But ultimately he felt “No, I need this right now.” Self-medication was often not a decision made lightly. One person said it cost ‘£80’ to ‘£110’ per month’ to self-medicate. Another said they ‘couldn’t afford self-medding’ without going back to sex work.

Some people described varied experiences of self-medication. Tyra shared her experience of ‘self-prescribing’ the contraceptive pill ‘from 16 until 18’ rather than hormone therapy. She said ‘I think this was maybe four or five months I was taking this’. She experienced ‘migraines, my memory was very bad, it wasn’t ideal.’ Tori said ‘if you’re on the wrong hormones before somebody’s given you the right level, you might not get as good enough breast tissue’.

Shash says [self-medding] worked well for me [but] I would not recommend it unless it’s the last option.

Age at interview 23

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See also:

Experiences of private healthcare

Experiences of GP surgeries

Hormones

Messages to healthcare professionals

Views on improving healthcare

* The Royal College of General Practitioners (RCGP) position statement on providing care for transgender patients https://www.rcgp.org.uk/policy/rcgp-policy-areas/transgender-care.aspx

** The GMC advises that bridging prescriptions can be issued if patients meet the following criteria:

·       The patient is already self-prescribing or seems highly likely to self-prescribe from an unregulated source (over the internet or otherwise on the black market)

·       The bridging prescription is intended to mitigate a risk of self-harm or suicide, and

·       The doctor has sought the advice of an experienced gender specialist* and prescribes the lowest acceptable dose in the circumstances.

GMC, 2021. Trans healthcare: mental health and bridging prescriptions.

Private healthcare experiences

Content warning: mention of suicide risk. Many young people we spoke to were unable to access the NHS Gender Identity Development Service (GIDS) for children and young...