There were three UK medical doctors who were interviewed on last night’s Panorama (25.02.19) which promised to find out how much we understand about the care available to younger gender variant people in the UK.
One was Dr Faye Kirkland who describes herself on Twitter as ‘Multi-award winning broadcast journalist. Working GP. Freelance journalist of the year, 2018’. One was Professor Carl Heneghan a clinical epidemiologist, and then there was me, a GP and gender specialist.
I agreed to be interviewed for this programme because I was confident that in presenting my thoughts and sharing my approach with a medically qualified doctor, the result would be more balanced than the sensationalist media coverage I (and indeed the topic of trans healthcare) have had in the past.
I reasoned that this doctor/journalist would be able to understand the relationship between clinical care, patient expectation, and evidence-based practice and draw a professional conclusion.
I agreed to take part because the programme needed to hear from a voice in favour of helping younger patients. I agreed because Panorama is an investigative programme and there is a huge need for a grown up discussion to be had on the topic of how we help those people who are suffering
I spent more than three hours recording with the Panorama team, shared numerous resources, references and research and put them in touch with members of my team, one of whom was recorded during one of her sessions. I was as transparent as possible. I have nothing to hide.
It is no secret at all that we need more solid research in this area, I felt confident that a programme as prestigious as Panorama would have moved on from this topic and would instead be looking to uncover something worthy of the programme’s investigative reputation.
My money was on a piece that would go ‘inside’ the NHS and uncover the truth about the delays in access to treatment, and the consequences for those living with gender dysphoria.
I knew that Dr Kirkland was interviewing families and youngsters who were living with gender dysphoria, I was delighted that finally their voices would be heard.
The programme started with an anonymous healthcare professional talking of their concern about ‘large numbers of patients who want physical treatment as quickly as possible’ and with Polly Carmichael voicing the question as to whether treating youngsters may ‘impact brain development’ in the future.
Where were the families? Where were the children? My heart sank as I began to realise that Panorama had probably missed the point.
While I respect my colleagues in the NHS and I agree with the Women and Equalities report 2016 finding that, ‘We acknowledge the hugely important and pioneering work of the Tavistock Clinic in providing help and support for gender-variant children and adolescents, and their families.’ I also strongly agree with their view that there ‘are legitimate concerns among service-users and their families about the clinical protocols which the clinic operates regarding access to puberty-blockers and cross-sex hormones.’ The report also clearly acknowledges that: ‘Failing to intervene in this way, or unnecessarily delaying such intervention, clearly has the potential to lead to seriously damaging consequences for very vulnerable young people, including the risk of self-harm and attempted suicide.’
Their report also identified that, ‘The Tavistock Clinic is aware of an important Dutch long-term study which apparently shows the benefits of early intervention in gender-dysphoric children, with “a staged programme of puberty suppression, cross-sex hormones and gender reassignment surgery” at appropriate ages.’
I am disappointed that Dr Kirkland did not touch on these important perceptions of the care that is available to trans youth in the UK.
While Polly Carmichael has years of experience in dealing with transgender children, she is not medically qualified and is not able to prescribe puberty blockers or hormones herself.
She can, however make recommendations on a patient’s suitability (or not) for such treatments, that is a powerful position. Early on in the programme she was quoted to saying that all patients should be treated on a case by case basis.
However, later Dr Kirkland goes on to explain that the NHS only prescribes hormones to patients after they have been on blockers for a year (regardless of whether they have completed puberty or not) and not until around the age of 16. What happened to a case by case approach?
Dr Kirkland seemed to share Polly Carmichael’s concerns that we do not know the long-term outcomes of puberty blockers.
The viewer could feel reassured by Dr De Vries, from Amsterdam, who explained that they have been prescribing puberty blockers for 18 years to trans children. They have also been prescribed on the NHS for the past 10 years.
Dr Kirkland recognised that we have been using them for children experiencing precocious puberty, for many years. But she was still worried that in some way trans children might be different, saying ‘less is known about their safety in transgender medicine.’
Trans women are women, trans men are men, trans children are children. They have the same heart, lungs, brain, liver, blood. The only difference that we heard in the programme is the distress that they experience as a result of the disconnect between their physical gender and their experienced gender.
A disconnect which can lead to: distress, self-harm, suicide.
Professor Heneghan made his case very clearly early on in the programme and he has since had this review of evidence published in the BMJ. He says that, ‘The current evidence base does not support informed decision making and safe practice.’
https://blogs.bmj.com/ bmjebmspotlight/2019/02/25/gender-affirming-hormone-in-children-and-adolescents-evidence- review/
Dr Kirkland wanted to review the evidence, Polly Carmichael is worried about the lack of evidence, Professor Heneghan feels that current evidence is inadequate. However, in the absence of UK published guidance on the care of trans youth, and no plans for NICE guidance in the year ahead, UK clinicians can look to the recently updated Endocrine Society Guidelines. These guidelines were created after reviewing the current evidence. They were written by worldwide experts in the field, using the data we have available. Why did Panorama not refer to them?
They state, ‘The task force has confidence that persons who receive care according to the strong recommendations will derive, on average, more benefit than harm.’
So what do they ‘recommend’?
1. We recommend that, where indicated, GnRH analogues (puberty blockers) are used to suppress pubertal hormones.
2. In adolescents who request sex hormone treatment, …we recommend initiating treatment using a gradually increasing dose schedule after a multidisciplinary team of medical and MHPs has confirmed the persistence of GD/gender incongruence and sufficient mental capacity to give informed consent, which most adolescents have by age 16 years.
3. We recognize that there may be compelling reasons to initiate sex hormone treatment prior to the age of 16 years in some adolescents.
Why is that so hard to accept? Using blockers and hormones when appropriate to do so, is going to do more good than harm to patients who are suffering.
Instead of quoting the research that has informed the current gender affirmative guidelines published in the USA, Canada and Australia, Dr Kirkland chose to look at some research carried out in sheep. The research seemed to show that blockers impacted negatively on the anatomy of the sheep’s brain.
The average life expectancy of a sheep is 10-12 years, so even if these sheep were allowed to live out their full life, having been prescribed puberty blockers, surely the fact that Amsterdam have been using these medicines for 18 years – and have evidence of their efficacy in humans, is more relevant?
When Dr Kirkland interviewed me, she questioned my reference to the Stonewall data that shows that ‘More than one in four (27 per cent) trans young people have attempted to commit suicide and nine in ten (89 per cent) have thought about it. 72 per cent have self-harmed at least once. (Youth Chances 2014, sample size = 956). (https://www.stonewall.org.uk/sites/default/files/trans_stats.pdf)
She stated that GIDS website did not agree. Their website states, ‘The percentages for associated difficulties and self-harm appear to be in line with young people from the LGB population (Stonewall, 2012)’ This data from 2012 does not agree with Stonewalls’ more recently published data from 2014. I wonder why they haven’t updated their website?
I was keen to hear what Polly Carmichael would have to say on the subject. Patients who have come to me for help, having faced difficulties with the Tavistock approach, have often been suicidal with long histories of self-harm.
The voice of the actor for ‘Fiona’ stated that her son was ‘prepared to take his own life.’ Polly opined that, ‘the figures around self harm and suicide need to be interpreted with great caution.’
This saddened me greatly, surely even one life lost is one too many?
To close the programme, Polly Carmichael was quoted saying that, ‘There is a febrile debate going on. It is a really difficult space.’
We did not hear from any NHS doctors who were treating young people.
We did, however, hear that some of the clinicians from the Tavistock had resigned. Apparently they, ‘are worried about the impact of increased demand and the reliability of research for the treatment on offer. Former insiders who didn’t want to go on camera claim that they felt rushed into green-lighting medical interventions.’
Dr Kirkland explained to the viewers that I myself had had my medical license suspended due to complaints that arose from treating the child that was prepared to take his own life. For the record, I did not see my helping this child as bribery or being rushed into green-lighting medical interventions. I saw this as prescribing treatment for a child on a case by case basis, in accordance with published guidelines, in order to do more good than harm.
I have suffered greatly for doing that, and of course having seen what happened to me, and other UK doctors who ‘dared’ to help trans people, it is understandable that other GPs may feel terrified to prescribe.
Fear of the lack of evidence, fear of complaints being made against them, fear of regulators, fear of long-term harm, fear for their own careers.
In 2016 the Women and Equalities Committee recommended that, ‘consideration be given to reducing the amount of time required for the assessment that (NHS) service-users must undergo before puberty-blockers and cross-sex hormones can be prescribed.’
Has this happened? No.
Why aren’t we looking to our more advanced colleagues who have been running established services for many years?
I directed the Panorama team to Dr Johanna Olson-Kennedy, who is highly respected and hugely knowledgeable in this field as a doctor who is actively treating young transgender patients on a daily basis. And yet her opinions were not sought.
Dr Olson-Kennedy, together with her co-authors, explain in her paper on the care of trans youth that: ‘While sparse, data exist regarding the impact of puberty suppression and gender-affirming hormones administered during adolescence, there have been promising results from the Netherlands indicating that this approach in adolescents results in improved quality of life and diminished gender dysphoria.’ http://transhealth.ucsf.edu/pdf/ Transgender-PGACG-6-17-16.pdf
That means better life and less distress.
Why is it so hard to feel confident to give that help to our trans children in the UK?
Panorama had a chance to change the narrative. Instead it chose to follow the herd. Until more people are willing to ask the difficult questions of those in charge of treatment, gender variant people will have no voice.
Photo by Merritt Brown on Unsplash