A recent article published in the International Journal of Transgender Health analysed the failings in the UK’s public provision of care to trans youth by talking to those affected.
In the article entitled: “It’s like my kid came back overnight” Experiences of trans and non-binary young people and their families seeking, finding and engaging with clinical care in England. the authors examined the experiences of 27 trans and non-binary children and youth, and their families, who had sought care via the National Health Service in England.
The article is available here and it makes for very interesting reading.
The authors begin by explaining how trans and non-binary children and young people in England struggle to gain access to affirming clinical care, even though international research evidence from the last 15 years points towards this being the best practice approach.
The combination of this, with the negative discussions that are all pervasive throughout UK national media and politics, only adds to the problem. UK families face numerous barriers to care including: waiting lists, delays in referral processing, models of care that are not in line with current International best practice and a lack of adequate education and training.
This last point is perhaps one of the key issues in the barrier to care to trans people in the UK. Primary Care is the logical place where trans healthcare should sit. Doctors have the expertise that is needed for straightforward cases, being adept in the management of hormones due to their relevance in so many other areas of healthcare. Yet so little training relevant to trans people, currently exists. This leaves doctors reluctant to treat, and eager to refer to specialist services which are already bursting at the seams. While UK and international guidance does provide a robust framework within which GPs can operate, the lack of visible support from the regulatory and professional bodies in the UK means many are reluctant to do so.
Instead, GPs are advised to prescribe contraceptive hormones to trans youth rather than puberty blockers or hormones. While this might indeed stop periods, it is both problematic and contrary to gender affirmative medicine, to prescribe higher doses of female hormones to a trans-masculine or non-binary person who is already suffering from gender dysphoria due to their body’s production of female hormones.
The authors confirm what the trans community, trans youth and those supporting them have been saying for a long time: there is a desperate need for training in this field for both family doctors and children’s mental health services. Gender identity development services as a whole need an overhaul.
Treatment for Trans Youth
Many articles have been published about the reduction in distress that comes with the use of puberty blocking medication and gender-affirming hormones, as recommended by current Endocrine Society Clinical Practice Guidelines, and this is used to inform safe care.
Leading experts worldwide agree that puberty suppression and subsequent gender affirming hormones is the most widely accepted and preferred clinical approach in health services for transgender people around the world.
Yet those interviewed for this research paper, describe an extensive period of ‘psychological investigation’ that NHS service providers undertake before referring for medication.
There is also much talk about the fact that the clinical leads for GIDS feel there is not enough research into their long-term effects. The authors of the paper observe that this is at odds with the research that is available on the ‘positive effects the timely prescription of such medications are known to have on self-harm and suicidal ideation.’
When we investigate the reasons behind the very different approach taken in the UK, to other more progressive countries that are leading the charge when it comes to trans healthcare, it becomes apparent that a certain degree of cis led-ideology may be informing the approach.
UK practice is led by three key clinicians who run the UK service for trans youth: Gary Butler, Endocrinologist, and Polly Carmichael and Bernadette Wren, both psychologists. All three agree with the approach favoured by the now infamous Kenneth Zucker who advocated ‘caution and a lengthy timeframe before prescribing puberty blocking medication.’
For those of you not familiar with the work of Kenneth Zucker, this article by psychologist Jemma Tosh entitled ‘Zuck Off!’ A Commentary on the Protest Against Ken Zucker and His ‘Treatment’ of Childhood Gender Identity Disorder seeks to provide an overview of his approach. In her article, Tosh explains that ‘Zucker’s treatment has been described as ‘coercive’ (Ehrensaft, 2008, cited in Spiegel, 2008) and in some instances ‘abusive’ (Burke, 1996)’. She also notes that ‘The DCP arranged for Polly Carmichael to debate these issues with Zucker as she works at the Child GID clinic in London, but this appeared a rather superficial gesture as she was quoted as saying ‘that although his work is controversial, it is valid’
“It’s like my kid came back overnight” published in the International Journal of Transgender Health describes the varying paths that trans and non-binary youth may take before and after puberty. The paper dispels the idea that there is a set pattern and criteria that must be followed in order to qualify for a ‘diagnosis’ and treatment for trans youth. The authors compare the different paths with the common misconception often perpetuated by the UK that ‘children and young people can suddenly and mistakenly come out as TNB as a result of peer pressure from TNB friendship groups’.
Private Healthcare provision in the UK
With no adequate solutions on the NHS, patients have two choices: go without care or seek private care, and private services have emerged to plug the gap.
The paper notes that the success of private services, such as GenderGP, is particularly noteworthy in a country with a robust National Health Service: ‘the fact that so many of our interviewees sought out private services – in a country where National Insurance contributions should fund adequate health care via the National Health Service – points toward a gap in the provision of TNB children’s and young people’s health care.’
Indeed, GenderGP was initially set up to provide a bridging service to trans adults who were unwilling to wait the requisite four years to begin their medical transition. GenderGP’s model of affirmative care, with no waiting lists, quickly proved popular with people of all ages, particularly those faced with developing secondary sex characteristics brought about by pubertal changes which were causing extreme distress.
First hand experience
The authors discuss published evidence of this distress, caused by the progression of puberty:
- during the long waiting lists in GP surgeries to be referred;
- for CAMHS to intervene and
- for GIDS to start the assessments.
They compare this with the fact that social transition, prior to puberty starting, allows trans youth to experience equal mental health scores to cis youth.
Again, the authors reference some of the distressing experiences that have been described during interactions with UK-based gender professionals on the NHS: ‘Misgendering, deadnaming, and stereotypes which assume a binary model of appropriate gender presentation.’
Many of the families interviewed told how their GP refused to refer them and how ‘even after a referral, a years-long waiting list, and a months-long assessment, respondents reported that GPs often refused to administer prescribed medication.’
One interviewee quoted their GP as having said that supporting trans healthcare was: ‘against their policy’. Another described continuous back and forth communication between their GP and CAMHS, with each arguing about whose job it was to actually refer to GIDS. Many described extensive delays due to the wrong referral form being completed and therefore refused, even though the families weren’t told until months later when they themselves checked on progress.
Interestingly, the authors describe how a ‘theme of ‘fortune’ or ‘luck’ ran through many of the participants’ experiences, when things went smoothly.
Sadly, those interviewed spoke of painful experiences with ‘intrusive and irrelevant questions about sexuality rather than gender’. They describe how the children were asked about ‘whether their gender identity has come about due to some sort of trauma or parental pressure.’ There was a strong theme of having to persuade the therapist to believe them.
The experiences of the non-binary young people were also extremely negative. They describe how ‘fear was a theme for all of our non-binary interview participants, and meant that non-binary young people were unlikely to present themselves at GIDS as anything but a binary version of transgender.’
The article includes further reports of:
- Being diagnosed and it being acknowledged that hormones would help, but no hormones were prescribed.
- Distressing and avoidable pubertal changes taking place while blockers were being withheld.
- GIDS clinicians asking the GP to prescribe high-dose contraceptives to stop periods while explaining to the patient how dangerous blockers were.
- How affirming approaches to medication were generally associated with a positive effect on mental wellbeing and how one mum described the difference that T made to her son as: ‘It’s like my kid came back overnight’.
In contrast, one mother describes the approach of the unnamed private clinic they accessed after waiting two years for GIDS with affection: “They’re lovely, everyone that we’ve seen … has all been really really kind and have just listened to him. Which is a novelty, and they’ve just listened to what he wants and been totally led by Xavier and myself, rather than making us jump through hoops all the time”.
This investigation takes anecdotal evidence and input from those impacted and analyses it against a backdrop of poor service provision by a public healthcare system that was once described as the envy of the world.
While the NHS has dragged its feet, been held back by political pressure and refused to adapt to support this growing patient cohort, private services have evolved to meet patient needs. This has solved the immediate, urgent gap in care for some but it is not a viable solution long-term. Private healthcare should be a choice not a necessity.
It is time for new leadership and protocol in NHS services that embraces modern, evidence-based practice. It is time for the NHS to deliver affirmative trans healthcare for all people of all ages, with GenderGP standing by in a supporting role to advise and guide and ensure those who need it get the best possible care.
“It’s like my kid came back overnight” Experiences of trans and non-binary young people and their families seeking, finding and engaging with clinical care in England was written by Anna Carlile, Department of Educational Studies, University of London, Goldsmiths, UK, Ethan Butteriss, Mermaids, UK, and Annie Pullen Sansfacon, School of Social Work, Universite de Montreal, Montreal, Canada