We are very grateful for the following comments from a former senior clinician at an adult NHS gender clinic which, we hope, will help to inform parents of vulnerable adults in navigating the system. For the experience of a mother of a transitioning young adult click here.
If you have more questions about the process, please let us know and we will try to answer them.
I was formerly a manager and clinician at an adult gender identity clinic (GIC). My role was to line manage and lead the clinical team and to conduct diagnostic assessments. I had serious clinical concerns about the service, the changing demographic of our patient population and the increasing complexity of difficulties many patients suffered with. I eventually whistle blew and resigned from the service late last year. I will endeavour to be as neutral as I can be in discussing adult services but I thought important that you know my own, professional, context.
There are seven adult GICs in England who all work differently in terms of how they assess and their treatment pathways. To address this disparity, a new national service specification (which is still in draft) was published in 2019:
This specification aimed to both streamline services and to ensure that all clinics worked in the same way. It was compiled by the gender services’ Clinical Reference Group which is made up of the lead consultants of the adult gender services, service user representatives and staff from NHS England. It was also informed by the World Professional Association for Transgender Health (WPATH) guidelines. I think there are serious issues with this specification, but I will leave you to make your own mind up. It does not make any reference to the changing demographics or complexity of the patient group. Most services do not adhere to this service specification. Therefore, there remains the situation that the GICs all work differently. I will outline the process at the GIC I worked at but, please bear in mind, your local service is likely to be different.
As you know, waiting lists for GICs are very long, ranging from eighteen months to four years. You can check waiting times on individual GIC websites. According to the national service specification, young people already seen by the children and adolescent service (GIDS) should be seen within three to six months of referral to adult services. Some clinics adher to this guideline, but most do not. When deciding which adult GIC to transfer to, it would be worth a young person finding out when they would be seen as a ‘transfer of care’. As adult GICs are nationally commissioned, people may ask to be referred to any service in the country.
The first diagnostic assessment appointment
At the GIC I worked at was this lasted for 90 minutes and would be with a ‘non-medic’. This could be a psychologist, psychotherapist, mental health nurse or occupational therapist with sufficient experience. In my experience, the majority of patients were very nervous at this first appointment and I tried to keep the session as relaxed and informal as I could. This appointment asked for information such as: past and current social circumstances, development of gender concerns and identity, physical and mental health difficulties, experience and understanding of gender dysphoria, past and current therapy and social transitioning. About 50% of people referred to us had a diagnosis of autism, so I would try to gain understanding of how this manifested. As a clinician, my aims were to capture clinical information and to begin to understand the wider context of someone’s gender concerns. For example, the possible impact of trauma on someone’s feeling of gender incongruency, links with autism and sense of identity, presence of mental illness and having being bullied as a child and young person. As a clinic, we would expect people to have socially transitioned and to be living in their chosen gender role. Increasingly, however, people had not done this or had done it only partially. I would explore this with them and try to understand the reasons why. It became increasingly common for people to want to be prescribed hormones first and to then plan to socially transition. This is something we would never do as a clinic. Social transition, even in part, was an important step for people to have done before they attended the clinic.
I felt that 90 minutes was a very short time to gain this information. This was especially the case if people were very nervous or had communication or mental health difficulties. Occasionally, I would offer people a second appointment with me, but this was generally frowned upon by the lead consultant. This was because the new specification only allowed for two assessment appointments: one with a non-medic and one with a medic. I did not feel this was enough time, especially for people with more complex histories and difficulties, who came to make up the majority of our referrals.
The majority of people progressed along the assessment pathway to the second diagnostic appointment. However, if the clinician had sufficient concerns about the appropriateness of this, the patient would be discussed by the multi-disciplinary team. The decision would be made to either discharge the patient or for them to continue to progress along the assessment pathway. If the decision was made to discharge, the patient would be invited to an appointment with the assessor and with a consultant to explain the decision. It was quite rare for people to be discharged after the first appointment, however.
Following this assessment appointment, the clinician would write up a report. This was, generally, not sent to the patient. The clinician would complete a form stating whether they considered the patient met the diagnostic criteria for gender dysphoria and transsexualism (see appendix for criteria) and whether they were ready to progress to ‘non-reversible’ medical interventions such as hormones and surgery. In common with many other clinicians, I have concerns about the diagnostic criteria and their usefulness. There was also the, regular, occurrence of people meeting the diagnostic criteria but me feeling that their difficulties were not actually rooted in gender incongruency. For example, there may have been past trauma or complex mental health issues. One appointment is a short space of time to make this diagnosis and I often felt it was not appropriate to do so.
I am aware that some other GICs do involve families in the assessment process. We also offered information workshops for friends and family, although I am not sure how widespread this is.
The second diagnostic assessment appointment
This would be for two hours and was with one of the doctors at the clinic. Because of the lengthy internal waiting lists, it could be a year before the first and second diagnostic appointments. When selecting a GIC, it is worth also checking the internal waiting lists between appointments. Not all GICs are upfront with giving people this information (you can ask via FOI). This wait was another concern of mine. The medic appointment was essentially the same as the first diagnostic appointment. According to guidelines, people need to have been assessed by two independent clinicians. At my GIC the second assessor would not have read the first assessor’s report in order to remain impartial. For the patient, this appointment could feel quite repetitive. Following the appointment, the medic would write a report which would be sent to the GP and the patient. The medic would also complete the diagnostic and ‘readiness’ form. If both the medic and the first assessor concurred that there was a diagnosis and the patient was ready to progress to hormones, the patient would progress to a further appointment with the same medic.
If there were any doubts, by either the medic or the first assessor, the patient would be referred for multi-disciplinary team discussion. The wait to be discussed was about six months, a wait that was growing owing to the increasing complexity of many patients. The team would decide either to progress the patient, to discharge or to offer further sessions of assessment. If it was the latter, a letter would be sent to the patient explaining the reasons why. Typically, up to five sessions were offered and appointments would explore particular issues in more depth. Because of the pressure of numbers, we were rarely able to offer more time than this or to provide longer-term therapy. Generally, people were annoyed and quite defensive about needing extended assessment as their usual goal was to progress quickly to hormones and surgery. They arrived at the GIC having the solution to their difficulties: gender transition by hormones and surgery. Therefore, people were usually closed to any other explanation or remediation of their difficulties. I understood this and felt that therapy and exploration would have been most useful before people were referred to the GIC.
It is important to bear in mind, that most, if not all, GICs do not have the resources to provide long-term therapy and exploration and they are, essentially, assessment services. I would strongly advocate exploration in private or mainstream NHS therapy services before someone is referred to a GIC. Therapy would allow a fully exploration of the wider context of identity difficulties. This is a personal view, but I feel that accessing therapy before GIC referral is the single most important thing you could support someone to do.
The third appointment
This took place with a medic and was to review the first two assessments and to prescribe hormones, which most patients wanted. The doctor would go through the risks and regime of hormones and the patient would sign consent forms. The doctor would then write to the patient’s GP and ask them to prescribe and monitor hormones. The doctor would offer detailed clinical instructions to the GP and on-going support, when needed.
While some GPs agree to prescribe and monitor hormones, a significant minority do not. In this scenario, some GICs agree to prescribe and monitor, but most do not. It is important checking with your GP when you first ask them to make a referral to the GIC if they will prescribe and monitor hormones, should these be recommended. If your GP refuses, you will need to find a GP who will agree. This is a difficult issue and one which has been discussed with NHS England for several years, with no resolve. The situation is country wide.
Review appointments for people prescribed hormones were held with nursing staff approximately every six months. My GIC offered speech and language therapy and also occupational therapy to help with social transitioning. Short-term support/therapy was offered, but generally not more than ten sessions as staff resources were so limited. We would encourage people, if needed, to access their local mental health services, NHS and private. After six months on hormones, female-to-male patients wishing to have a mastectomy were seen by a medic. If things were going well and the patient was stable, physically and psychologically, the medic would refer to a surgeon. The surgeon would complete their own assessment. Generally, the wait for mastectomy is only a few months.
After a year on hormones, patients wishing to have lower surgery were seen by a medic. Following this appointment, the patient was discussed by the multi-disciplinary team. If the team was in agreement that things were going well and the patient was stable and ready, the medic would refer to a consultant in another GIC for a second opinion. The waits for second opinions were about a year, but this will vary from clinic to clinic. The patient then needed to attend another GIC for this second opinion. If it was positive, the second opinion medic would confirm this and the patient could be referred to a surgeon for lower surgery. At the time of writing, there are only two surgeons who provide this: one in Brighton and one in London. The patient will be assessed by the surgeon and, if positive, will be placed on a waiting list for surgery. The waits are very long.
After surgery, the patient was reviewed by the GIC and, if all is well, was then discharged. Adult GICs are not commissioned to see people who are post-surgery. Therefore, revision surgery or any other difficulties could not be dealt with by a GIC. In this scenario, which was rare, patients would have to approach their local clinical commissioning group for funding. I feel this is a main difficulty in the system and something that is important to be aware of.
If someone requires hormones, upper and lower surgery, the time from assessment to discharge averaged seven years at the GIC where I worked. This was dependent on variables such as the length of time for second opinion for lower surgery and the waiting time for upper and lower surgeries. Other GICs may vary, but the time scales across all clinics are increasing all the time. Some patients may want time to consider whether they want to progress further. We would always offer the option of discharge with ‘fast transfer’ back in. This was, generally, to be seen within three months. Again, I’m not sure if this is the case at other GICs, but it would be a good question to ask.
Appendix – Diagnostic Criteria
The Diagnostic and Statistical Manual of Mental Disorders (DSM-5) provides for one overarching diagnosis of gender dysphoria with separate specific criteria for children and for adolescents and adults.
In adolescents and adults gender dysphoria diagnosis involves a difference between one’s experienced/expressed gender and assigned gender, and significant distress or problems functioning. It lasts at least six months and is shown by at least two of the following:
- A marked incongruence between one’s experienced/expressed gender and primary and/or secondary sex characteristics
- A strong desire to be rid of one’s primary and/or secondary sex characteristics
- A strong desire for the primary and/or secondary sex characteristics of the other gender
- A strong desire to be of the other gender
- A strong desire to be treated as the other gender
- A strong conviction that one has the typical feelings and reactions of the other gender
In children, gender dysphoria diagnosis involves at least six of the following and an associated significant distress or impairment in function, lasting at least six months.
- A strong desire to be of the other gender or an insistence that one is the other gender
- A strong preference for wearing clothes typical of the opposite gender
- A strong preference for cross-gender roles in make-believe play or fantasy play
- A strong preference for the toys, games or activities stereotypically used or engaged in by the other gender
- A strong preference for playmates of the other gender
- A strong rejection of toys, games and activities typical of one’s assigned gender
- A strong dislike of one’s sexual anatomy
- A strong desire for the physical sex characteristics that match one’s experienced gender
ICD-10 Diagnosis of Transsexualism:
A desire to live and be accepted as a member of the opposite sex, usually accompanied by a sense of discomfort with, or inappropriateness of, one's anatomic sex, and a wish to have surgery and hormonal treatment to make one's body as congruent as possible with one's preferred sex.