I attended the (Re)thinking trans healthcare conference on March 29th with a mixture of excitement and healthy scepticism. My excitement came from the involvement of Dr Johanna Olson-Kennedy, who had been personally invited by Bristol University to share her insight, as one of the leading voices on gender affirmative healthcare for trans youth in the US. My scepticism was bound up in how her approach, which is so similar to mine at GenderGP, would be received by those panel members who do not share our thinking.
The event began with brief presentations from Director and Consultant Clinical Psychologist – Polly Carmichael, Consultant Clinical Psychologist – Bernadette Wren both from the UK Gender Identity Development Service (GIDS) and Professor Johanna Olson-Kennedy MD – Medical Director of the Center for Trans Youth Care and Development at Children’s Hospital Los Angeles.
The subject of the discussion was: Children’s Access to Medical Transition Pathways through a Model of Informed Consent
In a discussion around informed consent to medical treatment, it was unfortunate to have no medically qualified representation from the UK on the panel. Neither Carmichael nor Wren are able to prescribe medication to young people and, in their capacity, should not be advising on either treating or withholding treatment. Even though Carmichael and Wren use the prefix Dr, due to having a PhD doctorate, they are not medically qualified and this can cause confusion.
In her presentation, Carmichael acknowledged that the UK services sees young people of all ages, with the majority being adolescents. She talked about the fact that there has been a great increase in referrals over the last few years, culminating in a big spike in around 2015. Interestingly, she noted, the referral rate is now beginning to level off, with 11% of young people seen by GIDS identifing as non-binary. Olson-Kennedy then presented her figures from the USA and it was reassuring to see the similarities between the two countries. In America, Olson-Kennedy also saw an increase in referrals which spiked in 2015, before beginning to level off.
Carmichael relayed the current UK model that is in use, which involves families being assessed by two clinicians, with an assessment phase of 3-6 sessions over many months. She described a network model, working with local mental health services and then onward referral to a medical clinic for those deemed suitable for medical treatment by a doctor.
This is problematic for children and young people who are desperate to receive medical intervention. Once they have reached the top of the waiting list to be seen (nearly two years), they must then navigate the assessment system BEFORE being allowed to see a doctor.
Conversely, the model that Olson-Kennedy described, involves the young person, on referral, being triaged by what their ‘intake coordinators’ (some of who are trans and some are cis) who are clinically skilled. What this means, in plain English, is that they are not medically qualified and may hold no qualifications in psychotherapy, but have been trained to assess the initial needs and desires of the young person and their family.
Having been triaged by the intake coordinators, patients are directed to the appropriate department. So, for example, if a young person is suffering terribly with gender dysphoria around pubertal development, they may be sent straight to the team that is able to prescribe a blocker so that puberty can be paused. This way, psychological support can be provided over time, without the fear of bodily changes progressing further in the meantime.
Some patients or families may want to do some more exploration around their gender and what it means to them, and they can go on to see the clinical social workers – the USA version of what we in the UK would describe as mental health professionals – who can analyse, counsel, facilitate and support.
Olson-Kennedy emphasised the importance of using correct pronouns from the outset, meeting young people ‘where they are at’. She gave no ‘caution’ whatsoever that this would imply a collusion with their trans identity or result in a negative outcome, should that person not wish to progress with medical intervention. It was a very simple concept: Ask the child how they would like to be called, and call them that.
Conversely, many parents I meet through GenderGP, tell me that this is not the approach taken by some working in the UK system, and that there is still advice given that the child that wants to be called ‘she’ will most likely revert to wanting to be called ‘he’ and that therefore, it may not be best that this early social transition is ‘encouraged’.
Returning to the approach taken by the team led by Olson-Kennedy, she explained that for some young people, surgery may be the desired route, for others it may be some help with advocacy in the community. Whichever way it is, it is led by the service user and they relay their needs and wishes to the intake coordinator so that they can be directed to the right department. In the largest centre for trans youth in the US, their approach is not hampered by waiting lists, as there is no bottleneck caused by an assessment system.
In cases, Olson-Kennedy explained, where the youth is ready for medical intervention but their families need more time, the referral can be made to both pathways: The patient for interim medical intervention, and the family to the talking services.
Not one child, in the programme at the Center for Trans Youth Care and Development at Children’s Hospital Los Angeles, is triaged through an assessment process. Olson-Kennedy stated that she found it bizarre that any person may be able to assess someone and write a report which implies that they know more about the gender of that person, than the person experiencing their own gender.
Olson-Kennedy explained that her definition of an informed consent approach to trans healthcare for young people was that the information has to be bi-directional, i.e. coming from young person and their family, as well as from the experts at the clinic.
Carmichael was more cautious and felt that they had to be careful as criticism is aimed at GIDS from both sides – those who wish for them to treat faster, and those who don’t want the clinic to exist at all. I heard parents discussing this afterwards. The general consensus among them appeared to be that it was absurd to even entertain the idea that treatment should be delayed further because some members of the public refused to accept the existence of trans youth.
Wren discussed the concept of capacity to consent under UK law. In the UK, young people can consent to care without parental approval at any age. However, her key concern appeared to be that the law requires carers to consider what younger people might want as adults. Olson-Kennedy felt that this caution and concern may in fact serve to further delay treatment options, and when a young person is distressed, that delay can cause real harm.
Stewart was the only trans person on the panel and called for more trans inclusion in those who are facilitating services for children. Green explained that groups like Mermaids are at the hard end of supporting families through extensive and ever-growing waiting lists. She vocalised the damage done to young people as a result of the long waiting times to treatment, while the irreversible changes of puberty are taking place.
The concept of ‘watchful waiting’ was discussed and criticised as being more like ‘do nothing and wait’. Olson-Kennedy felt that young trans people seeking access to medical services are usually not making a decision about their gender. They are making a decision about what to do about their gender – with the work on what their gender felt like to them, having been done long before presenting to services for assistance.
Wren argued that the GIDS assessment aims to create a space for exploration for young people and their family, and Carmichael noted that there are similarities between GIDS and the Centre for Trans Youth Care in LA, but UK services are ‘a bit more cautious’.
Olson-Kennedy addressed the concept of caution and how helpful – or not – that might be. For those who need to move forward with medical interventions, doing nothing is not necessarily erring on the side of caution. She explained that it is not ‘cautious’ to let someone suffer.
Olson-Kennedy acknowledged that medical intervention was by no means an answer for everyone but the psychotherapeutic support work done by GIDS can in fact be done in concert with medical intervention for those who need/desire it. Acknowledging that a person can explore their future with better clarity once their puberty is put on hold and they have time to think.
Stewart felt that trans experiences needed to be front and centre and that framing trans experiences around medical models is inherently problematic. For a trans person, this is just their life and traditional healthcare frameworks don’t acknowledge the multiplicity of trans experience.
In children presenting early enough in their journey, the GIDS treatment pathway following assessment, included the use of GnRH analogues (blockers) from the start of puberty for around a year followed by cross sex hormones from around the age of 16.
For those presenting later, once they have completed the assessment period and our found to be potential candidates for treatment, they are put forward for blockers for a year, regardless of their stage of pubertal development. However, those who are around the age of 17 will be referred on to adult services. With figures showing that the majority of young people are referred to GIDS at the age of 15 and 16, a long wait followed by assessment may mean that most youngsters are being then referred on to adult services, without any medical intervention. This is regardless of their level of dysphoria and distress on presentation.
Olson-Kennedy’s service does not rely on any time periods and treats trans youth individually. She explained that, although rare, sometimes it was right to put children as young as 12 straight on to cross-sex hormones to allow peer-concordant puberty.
Wren showed concern at this approach. She cited that there had been three young people who had accessed GIDS services and been referred on for medical intervention, who had then stated that they were not so sure about the decision that they made. She reiterated that it is thus the responsibility of clinicians to be cautious.
Olson-Kennedy responded by pointing out that as these three young people had been through the GIDS assessment process and had been referred on for medical intervention, they had therefore not been captured by the cautious approach offered by the assessment team. Stewart agreed and felt that more weight should be given to the wishes of the patient and their family, and not that of GIDS.
Green concluded with an emotive appeal to the panel by saying that time and time again Mermaids hear from young people attending GIDS that they do not feel heard, and instead they feel judged. She felt that the whole process loses the voice of the young people and that they need more autonomy, however Carmichael countered this by acknowledging that there is a range of experience, and Mermaids doesn’t see everyone.
The UK’s approach to trans youth care is based on caution and fear of doing wrong, in the USA, the approach is to let the patient dictate the pathway. Olson-Kennedy openly acknowledged that some people start medical treatment and decide to stop, either temporarily or long-term – and her message in this regard was clear: this is also OK.
Importantly, she expressed utter conviction in the affirmative medical approach which has proven to be highly successful with good outcomes for gender variant patients. Olson-Kennedy and her team are currently conducting a longitudinal study and we look forward to their data being presented later this year. GIDS have also been allocated a research fund and we look forward to the future with interest and anticipation.
The conference certainly provided plenty of food for thought. One thing that did strike me was the lack of UK doctors, both in attendance on the day and included within the medical pathway for trans youth care. Surely our trans youth have the right to have the opinion of a doctor without the gate-keeping that currently takes place and causes such a bottle-neck in the system?