Joined up health and social care services: Annie

Annie is 26 years old and lives in Stroud. She is a Digital Sculptor and enjoys being creative, whether it is cooking, painting, or attending music festivals. In fact, Annie met her partner at a local jazz festival last year and they have recently celebrated their anniversary. Annie hopes one day to develop an exhibition about her experience of transitioning. 

Coming out was not easy 

Annie said that she had always felt jealous of women and had enjoyed dressing in women's clothes. Following being in a relationship with a trans woman, Annie began doing a lot of research during 2020 while working from home due to the National Lockdown. Annie is diagnosed with ADHD and attributes the hyper-fixation that she experiences as being the reason she was able to navigate understanding what her next steps needed to be to start her transition. 

Annie came out as Trans in 2021 to her best friend who accepted this immediately, although sharing the news with her family and work colleagues was not as straight-forward. 

Annie began to explore women’s clothing and wore them to work. She remembers that people expressed shock and did not appear very accepting. Annie lost her job shortly after that and wonders if this was the reason. 

Length of waiting lists meant Annie felt she had no choice but to pay privately for a diagnosis and treatment 

During 2021, Annie took the step to contact her GP who referred her to the Tavistock Gender Identity Clinic. However, due to the length of the waiting list, Annie realised that the best decision for her was to go down a private route for diagnosis and hormones. As the wait for treatment may be longer than 6 years, Annie was advised that people can seek “bridged” care while they wait for the NHS to take up their case. Annie contacted a Gender Hormone Clinic in Harley Street, London, and was informed that there was a 6-month waiting list. 

In September 2021 Annie presented at the Clinic in London for clinical support and on 23rd May 2022 she received a diagnosis of Gender Dysphoria. Annie also submitted an 8000-word document that she had written to support the assessment which in total cost £600. Following her diagnosis, the consultant wrote Annie a treatment plan confirming that she would need to ‘ask her GP’ to implement the appropriate course of action, for example, regular blood testing. 

A positive experience being referred to a Fertility Clinic 

One of the more positive experiences was being referred to a fertility clinic so Annie could freeze sperm. Although Annie had received her prescription for her hormones from the Gender Hormone Clinic in October 2021, she was unable to begin her treatment until this had been done as it would render her infertile. Overall Annie felt the referral process to the Fertility clinic was relatively quick, however she said it seems to be a bit of a convoluted process requiring her psychologist to write to her GP, her GP then making a referral to Cheltenham, only for Annie to travel to the Cheltenham clinic for an appointment to be referred again to another clinic in Cardiff to repeat the same discussions. 

Straight after visiting the fertility clinic in Cardiff, Annie started hormones on 12th January 2022 and said that almost immediately she noticed a change in how she was feeling - ‘It made me feel great already’.

Lack of joined up care and support created barriers to getting the healthcare that Annie needed 

However, on 17th January she received a letter from her GP explaining that they did not have the ‘specialists’ to oversee the recommended care through a Shared Care Agreement for blood testing or to prescribe the hormones she needed. This meant that Annie was unable to continue with her treatment. Annie tried to discuss this with them but felt that they were ‘arguing rather than listening.’ 

The Gender Hormone Clinic recommended changing GP which made Annie feel scared. Having to consider that she would need to pay for a private prescription at this point was not only a concern due to how expensive it would be, but Annie also felt deceived. Annie contacted some GP practices but often when Annie enquired about the possibility of a Shared Care Agreement, this was denied with no adequate reason given.

Annie explained that she often felt that it was up to her to inform GPs about transitioning – that they didn’t have the knowledge about how to support someone going through this process. This was an incredibly stressful time for Annie, and she felt she did not have anyone to talk to. It was around this time that she became friendly with someone who leads a local Trans Support group. Annie emphasises the importance of social spaces for trans people; a place where people ‘get you’.

Through new connections that she had made with the Trans community in Stroud, Annie learnt of a GP practice that had been supporting people with Shared Care Agreements. On 4th March, she moved house to be in the central stroud catchment area. 

An ongoing battle to get services to communicate effectively with each other places a great burden on Annie 

Straight away, Annie emailed the clinic to request that they send the shared care agreement to the surgery. However, by April, it appeared no-one was communicating, and emails were not getting through. This led to Annie having to chase things with both the Clinic and the GP surgery to make sure that they were passing information to each other.

Six months later, Annie attended a GP appointment to discuss her wishes to start receiving injection testosterone blockers, on the assumption that the Shared Care Agreement was in place as she had not heard anything otherwise. However, she had found out that the GP had not received the letter notifying them that she was on medication from the Gender Hormone Clinic. This led to Annie once again having to chase this to ensure the right communication was taking place between services. The clinic contacted Annie and suggested that she go into the GP surgery with a physical copy and get it date stamped so she would know that they have received it. 

A constant fight for safe and dignified care

Annie attended an appointment on 17th October to get an update on her shared care and other things. During the appointment, Annie used guidance that she had found from the General Medical Council, including NHS guidelines to try to explain why the shared care agreement should be accepted. Annie said that she felt dismissed as in her notes, her GP had simply written that Annie had read ‘some statement’ from the General Medical Committee guidance about the shared care agreement. The notes also documented that the GP does agree shared care, provided that the Gender Hormone Clinic would do the initial titration and stabilisation of any new medication before they took over. This would mean that any new medication needs to be paid for privately. The injections that Annie wanted would initially cost £300 that she could not afford. 

Annie said that she had a meltdown after that appointment. She felt like she was being constantly fought against and not listened to. 

The Gender Hormone Clinic revised the shared care agreement, and on 15th November 2023, the shared care agreement eventually became approved by the GP after taking 11 months. This means that her GP can now issue prescriptions and can take blood. Up to this point, Annie said she felt like she was being treated like a ‘criminal’ as every time she asked for something she had to fight through repeated questioning and needing to justify why she needed the safe and dignified healthcare that she was asking for. 

Am I trans enough? 

One of Annie’s concerns with getting a diagnosis to be able to have hormones, is the need for ‘dysphoria’ to be present to be trans. Annie feels that this way of medicalising trans is dangerous. In her experience, the way that people feel about themselves is different for everyone. Annie experiences this on a sliding scale, sometimes identifying more as non-binary as they/them, sometimes more she/her. Bottom surgery is common as this tends to be most dysphoric for most people, however for Annie, the most dysphoric thing is facial hair. Annie says that laser treatment for this is about £50 to £70 per session. Breast augmentation is not covered through the NHS but she feels that her breast growth is fine as a result of hormones. Annie was only able to get this because of going private and getting progesterone (which is currently unavailable on the NHS) and higher levels of oestrogen. 

Aside from the challenges Annie experienced in accessing appropriate healthcare to meet her needs, she also described some of the other daily obstacles she continues to overcome. For example, Annie has now obtained a Gender Recognition Certificate which gives her legal rights as a woman and within the current political and societal landscape, makes her feel more safe. However, this process took 3 years of submitting evidence to prove she is now living as a woman. Only about 1% of trans people have this certificate which Annie believes is because of how challenging the process is. 

The emotional impact has taken its toll

Unfortunately, having the shared care agreement approved in November 2023 did not provide any relief or respite to Annie. The emotional and physical toll that this process had taken meant that she was exhausted, and she was still having to manage the impact of her other health conditions while holding down a full-time job, a new relationship and daily life in general.  Annie has previously been diagnosed with severe depression, anxiety and OCD and she finds it hard to accept and register her feelings. She has also recently received a diagnosis of ADHD, the assessment for which she paid for privately. Annie had so much going on that in the December and start of January of 2024, she was crying every day and felt overwhelmingly stressed.

Annie was offered CBT from February 2024 however she has been unable to manage to complete a single session as she breaks down in tears. When Annie has tried to speak to the therapist about this, she has been informed that an alternative, such as counselling, is not available. Annie finds this confusing as when she was initially assessed, she was told she would be able to access counselling if the CBT did not work. She feels that she has been rejected by NHS mental health services in Gloucestershire and given that she has already had to pay privately for her trans diagnosis and ADHD diagnosis, Annie is unable to afford to pay for counselling on top of everything else. She said that she finds it hard to keep track of the money she has spent so far and the thought of going through even more assessments is very distressing. Annie continues to feel knocked back by services despite formally complaining and feels that there is no offer of help, only to try again with someone different. In the absence of alternatives, Annie is going to try to persevere but feels that it is likely that she will have to pay privately again.

Recommendations

• Healthcare professionals need to be trained to be aware of the social, cultural, economic, and legal factors that might impact the health (and health care needs) of transgender people, as well as the capacity of the person to access services.
• Services providing support to trans people should ensure that feedback from people with lived experience is used in the design of services as well as training for all staff.
• As there is a requirement for transgender people to access out of county services for treatment, local services must develop ways to 'bridge the gap' and break down barriers to enable effective communication and continuity of treatment and support. For example, it has not been clear to Annie what is available locally e.g. mental health support through the NHS, such as counselling.
• People must be provided with the right information to be able to make an informed choice about 'Right to Choose' i.e. even if a GP has made a referral for an assessment, they are not obliged to agree to Shared Care following a diagnosis and treatment plan being developed. The disproportionate impact this will have on certain groups of people in accessing healthcare must be considered, as well as the emotional impact of being given hope and then rejected.
• Assessments and treatment plans must be person centred and involve the individual and the people that are important to them in decision making (if appropriate). Treatment plans should consider mental health support at the earliest opportunity without fear that this will be used against them.
• Trans people, and those who are questioning, should be signposted to support groups and social spaces in their local area. Financial investment in these groups to ensure they are sustainable is crucial.

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