Written evidence submitted to the Transgender Equality Inquiry
Experience of the Tavistock and Portman’s (T&P) Gender Identify service
1) School counselling – my child had (unknown to us) been receiving help at school for 2 years for self harm and gender identity related issues. They eventually asked for help through CAMHS aged 14yrs.
2) We waited only 6 weeks for our first appointment at CAMHS after my child asked for help – excellent!
3) With the help of the CAMHS team my child’s feelings were relayed to the family within about 6 weeks and a referral was sent to the Tavistock and Portman (T&P) Trust. In the meantime my child was having weekly sessions with a consultant paediatric psychiatrist who made the diagnosis of gender dysphoria and explained to the family what medical intervention was available in the way of blockers. In his opinion this needed to be started as soon as possible as my child was so distressed about the pubertal changes happening to their body.
4) The psychiatrist referred us directly to a paediatric endocrinologist who worked with the T&P Trust. He refused to see us without us going through the usual cannels despite the diagnosis having already been made by a very senior mental health professional and me writing to him explaining my concerns about my child’s physical development and how that was having a negative impact on their mental health. No compassion or empathy was shown by the endocrinologist.
5) At the same time I wrote to the T&P asking for my child’s appointment to be expedited. I explained the problems they were having and explained about their deteriorating mental health. I got NO response to my letter.
6) The first appointment at the T&P almost exactly 18 weeks from the referral being made.
7) I asked for an urgent referral to the endocrinologist but was told there was a process to follow and that a referral could not be made quickly. I asked for the opinion of the psychiatrist to be taken into account but he was never approached by the T&P team.
8) First endocrinology appointment was 12 months after being referred, virilisation had continued causing increasing distress, depression and anxiety. We were told it would be 3 months until blockers could be described. My child was absolutely distraught and left the appointment in floods of tears. As we left that appointment one of the psychologists said to me “I’m worried about xxxx’s mental health”. They could see how badly their decision had affected my child but were not willing to expedite any treatment. Shortly after that appointment my child took an overdose.
9) I was unwilling to risk her making another effort to end her life and so I was forced to buy blockers online. Eventually we were given the go ahead for her to receive her first blocker injection on the NHS. The day after they administered their first injection, the endocrinologist found out what I had done and he referred us to social services for safeguarding reasons stating they had to be sure it was what my daughter wanted and that we didn’t force her to have the injection! The consultant did not see the irony of questioning whether she consented to the treatment the day after they had given her that exact same treatment.
10) At follow up we were told my child had to be on blockers for 12 months before cross sex hormones would be prescribed. She had previously been told 6 months by the psychologist- she was devastated again! We begged for earlier care and were refused. Again no empathy or understanding from the clinicians. No acknowledgement of her capacity to consent to treatment.
11) Before our 6 month follow up appointment I wrote to the endocrinologist asking that he discussed my daughter’s case with the team and considered prescribing earlier than 6 months. (See attached the letter in the appendix). The endocrinologist failed to discuss the letter with the team prior to our appointment. He commented that the letter was well researched and well written but refused to discuss any of the content of the letter with us. He flatly refused to prescribe cross sex hormones. I asked why. Was it because they thought my daughter was not able to consent? Was it because they thought she would change her mind later? The only reply I got was that “It’s protocol”. Again my child left in tears distraught at the lack of empathy at the consultation. I tried to reassure her that we would get hormones ourselves. The psychologist in the room told me that I needed to tell them if that was what I was going to do.
12) A few days later my daughter took another overdose.
13) We sourced oestrogen again over the internet in an effort to keep her alive. About 6 weeks later I received a letter from the endocrinologist saying we had been discharged from the service and that our local CAMHS team would provide psychological support. There was absolutely no warning of us being discharged, no negotiation, and no effort of compromise. At no time during the last consultation with the endocrinologist did anyone state that we would be discharged if we self-medicated despite the fact that they heard us talking about it. We were discharged without anyone actually bothering to find out if we had done that or not. There had been no conversation with myself or my child, just an assumption.
14) The T&P monopoly of care meant we were effectively discharged from the NHS with no support and no follow up. My child was incredibly vulnerable and known to be suicidal and the T&P simply didn’t care!
15) After 6 months, a formal complaint to the Trust and the intervention of my MP my child was accepted back into the service. Six months of stress, worry and fear about the future.
16) I struggle to find a single good word to say about this service. They repeatedly ignored my cries for help, they have no form of individualised care and do not take into account the needs of the patient or the patient’s own wishes. They don’t consult with local CAMHS teams even when there is very senior and experienced personnel involved with that child’s care. Their ridged adherence to “protocols” results in harm being caused through the mental torment that young people have to endure and result in unwanted physical changes happening that could easily have been avoided.
17) Whilst waiting for blockers, my child developed an Adam’s apple – a give-away to her birth gender and a cause of immense distress to her. Timely care would have prevented that happening. As a result she dropped out of performing arts GCSE as she couldn’t stand up in front of an audience with the voice she had developed. She became gradually more and more withdrawn, not even able to order a coffee in a shop for fear of being “outed”. Surgery to remove an Adam’s apple is not available on the NHS so that is something we- as a family- will have to pay for in the future. This could have been completely avoided if only someone had listened to us.
18) The 500 mile round trip to the T&P is incredibly costly, time consuming and disruptive to school, college and work. We need LOCAL care.
19) Delaying my child’s physical intervention meant that she required far more intensive psychiatric support than I feel she would have required if treatment was available in a more timely manner. I feel both suicide attempts could have been avoided if someone had listened to her and understood how desperate she was.
20) I fail to understand why, when an adolescent is screaming to have puberty put on hold and is clearly suffering mentally as a result of pubertal changes, they are forced to wait a whole year or more before that treatment is offered. In all that time they are experiencing physical changes that continue to harm their mental health.
21) This pathway is in URGENT need of re-evaluation so that young people can be treated as individuals and the harm that the enforced wait causes is eliminated.
Appendix
Consultant Paediatric Endocrinologist
Leeds General Infirmary
Dear Dr xxxx,
As discussed with you before Christmas, I have been doing some research into the options for xxxx’s care and would like to share my findings with you for your consideration prior to our next appointment in March 2014 (which I have yet to receive).
By the time we see you in March, xxxx will have been living full time as female for a full 12 months. She will have been receiving Gonapeptyl for 7 months.
If you remember, when we met in September, you stated that xxxx would need to be on “blockers” for 12 months prior to beginning cross sex hormone therapy. xxxx had previously been told that the timescale for cross sex hormones would be 6-12 months and was devastated by the news of yet more delays in her treatment. I asked “why 12 months and not 6 or 24” and you couldn’t give me an answer. Sally Philot told me that this was “protocol” but could not tell me on what evidence that protocol was based. Indeed she said at that time that “not all NHS treatment has to be evidence based”. This statement concerned me greatly as I feel that is totally against the current NHS ethos. I stated that if there was good reason why the 12 month wait was necessary (eg high rates of desistence within that time), I would accept that and not pursue things any further. Nobody in the room was able to give me any indication of the desistance rates for me to consider. I have therefore been gathering this information from the published literature.
In autumn 2013 I submitted a freedom of information act request to the Tavistock and Portman Trust requesting copies of any audits undertaken by the Gender Identity Service and any papers that had been published in the last seven years in this area. To my absolute amazement, there was not one single audit undertaken within this timescale. I find this extremely concerning- that the only provider of care to young people with Gender Variance in England and Wales has undertaken no audit of their care! I was therefore hoping to find some evidence of the monitoring of standards of care in the published literature from the Tavistock Trust but was unable to find any published paper that described anything other than descriptive studies of young people’s traits at presentation. This led me to believe that whilst some research is being undertaken, nobody as yet has looked to evaluate the quality or efficacy of the treatment provided. Interestingly, in 2009 Di Chegli1 stated “A robust system of outcome monitoring and process to gather informed consent from service users is also essential”. 4 ½ years later, this does not appear to have been actioned. In the same paper he also stated “In our complex area of work, it is not possible to define with certainty what proper management is and we have to live with a certain degree of uncertainty about our practices as new experiences or evidence emerge”.
From there I turned to the research undertaken by the Dutch. Polly Carmichael has informed me that the Tavistock’s care is based on the Dutch research and so this seemed an appropriate place to turn to gather information. Having read 23 of their papers (copies of which they kindly supplied to me), I now feel in a better informed position to act as an advocate for xxxx.
On many occasions Polly Carmichael has been insistent that the guidelines for all treatment are not age based but are set individually for each young person. It may be pure coincidence that xxxx will be 16 by the time that she has been on blockers for 12 months but it feels to me that an age limit has been placed on her treatment. I therefore decided to investigate the age at which cross sex hormones are prescribed elsewhere.
In 2009 2 Hembree et al stated that “Identifying an age at which pubertal development is initiated will be by necessity arbitrary, but the goal is to start this process at a time when the individual will be able to make informed mature decisions and engage in the therapy, while at the same time developing along with his or her peers”. The authors state that the age of 16 yrs has been set in the Netherlands as in that country “16-yr-olds are legal adults with regard to medical decision making. This is probably because, at this age, most adolescents are able to make complex cognitive decisions”. The age of 16 years is also repeated in others of their papers. In 2008 Cohen-Kettenis3 had stated that “According to Dutch law, adolescents from 16 years on are legally competent to make a treatment choice, even without parental consent, because it is assumed that they are able to fully understand the pros and cons of a treatment”. They also state that “Under Dutch law, if children are between 12 and 16, they can also make treatment decisions, but at this age they still need the consent of their parents.” In 20114 the age of 16 yrs for cross sex hormones was again stressed but this time with no explanation. However the authors do go on to state that “it was established that a minor under 16 years of age can give informed consent to medical interventions when the minor has reached sufficient understanding and intelligence to be capable of making such a decision”. In 20125 they go on to state that “It is, however, conceivable that when more information about the safety of early hormone treatment becomes available, the age limit may be further adjusted”.
In summary then, the Dutch set an age for cross sex hormones at 16yrs but admit that this is not based on evidence other than age to give consent. They admit that this may well need to be re-evaluated in light of more recent research. In the UK, under the Mental Capacity Act, young people are also assumed to be competent to make their own medical decisions at the age of 16yrs unless proven otherwise. However, it is also clearly laid out under the umbrella of “Gillick Competence” that young people below the age of 16yrs are also able to make medical decisions if they can show that they understand the concept of treatment, the consequences of that treatment and the consequences of non-treatment. xxxx was deemed to be Gillick competent by her psychiatrist in 2013 when she was considering (and later underwent) fertility preservation treatment. I will attach a copy of this letter. In view of this, I do not consider that insisting xxxx waits until she is 16 to commence oestrogens is based on any good reason.
The other potential reason to delay cross sex hormones would be because of a high rate of desistence whilst on blockers. As there is no reference to this in any of the Tavistock research I again turned to the Dutch research for information.
In 20113 Cohen-Kettenis states that “GID in adolescence appears to be highly persistent. At the Dutch gender identity clinic, none of the adolescents diagnosed with GID and treated with GnRH analogs refrained from further treatment procedures or regretted gender reassignment”. This was further emphasised by Baudewijnte4 who stated that “…our clinical experience that GID in adolescents and adults is extremely resistant to change” the authors go on to state that “none of the participants regretted undergoing treatment”. In a paper entitled “Follow up of transsexuals”6 Smith investigated “20 treated adolescent transsexuals” and showed that of the treated individuals, no one expressed feelings of regret of treatment. In 2012 De Vries 5 stated that all those who began puberty suppression (at an average age of 14.75yrs- very similar to xxxx), all later started cross sex hormones.
There appears, therefore, to be no evidence that there is a high risk of xxxx changing her mind about perusing oestrogens.
xxxx is presently happy that she is finally being prescribed blockers. Apart from local discomfort, she has had no adverse reactions to these and I have seen an improvement in her mental health over the time she has been receiving them. She is, however, clinging to the hope that you will agree to prescribe oestrogen in March. She understands that this might not happen- in fact she is very pessimistic that it will happen. I am fully aware that her long term physical outcome will not be influenced by whether or not this treatment begins in March or September. However, from an emotional / psychological perspective, this will make a big difference to xxxx. She wants to see the physical changes to her body that she feels other girls her age have already experienced. She is changing schools in September to go to a 6th form College in Huddersfield. This is well out of our area. Her hope is that she will know nobody there and that she can go “in stealth”. Whilst I appreciate that only small changes to her body will happen within 6 months of beginning oestrogen, I do feel that this will give her a psychological lift and improve her confidence of passing as a girl amongst strangers.
Hembree states “Identifying an age at which pubertal development is initiated will be by necessity arbitrary, but the goal is to start this process at a time when the individual will be able to make informed mature decisions and engage in the therapy, while at the same time developing along with his or her peers”. I truly believe that xxxx is able to make these informed decisions and that she should be given the opportunity to “develop along with her peers”.
I would be most grateful if you would consider the above information prior to our appointment with you in March.
21 August 2015