Dr Helen Webberley has written an open letter to Dr Cass in response to their journal entry letter. In this letter, the recently vindicated Dr Webberley explains in thorough details why Dr Cass’ plans are not in UK transgender patients’ best interest.
Dear Dr Cass,
It has been two years since you interviewed me on 27 May 2021. I shared my real concerns at the state of the UK’s NHS healthcare system for trans youth. I remain deeply concerned.
When we spoke, you and I discussed that we need to reassure young people and their families that we, as doctors, have their absolute best interests at heart. However, I cannot reassure myself that their future is safe and that the healthcare that is being designed is fit for purpose.
I have been reading the recommendations from your review, and their interpretation by NHS England, and following your recent journal entry I wanted to share my thoughts and concerns.
In your journal entry that is undated but was delivered to me by email on 09 May, you state that, ‘The Review’s focus is on the long-term model.’ This seems to be at odds with the Terms of Reference laid out in your initial documentation where you also talk about ‘clinical management approaches for individuals with less complex expressions of gender incongruence who do not need specialist gender identity services’ and, ‘Current and future workforce requirements’.
To focus on the long-term model and turn your back on those gender incongruent young people who need access to blockers and hormones now, will cause untold harm to these young people. What is your recommendation for the current and immediate care of these children and adolescents? I understand that there are over 7,000 young people waiting on waiting lists with no short to middle term hope of access to care, many of whom will fall within the parameters of patients with less complex presentations who indeed do not need specialist services.
Expertise and Training
You talk about how you are ‘impressed by the expertise and enthusiasm of the clinical staff’ who will deliver the new service but where have they got their expertise from? There are still no formal training programmes in the UK, are they being trained and guided by the very people who were criticised in the last service?
There has been great concern, even from our former Health Secretary, who had said: “Individuals who oversaw significant failings at the Tavistock should clearly not be managing the set-up of the new system.”
You talk about the need to ‘improve triage and prioritisation of need’ but what is the plan? There are many children in dire need – today, and many of them won’t be able to wait. I am concerned that many transgender young people have already faced great suffering since we spoke. Some will have died through suicide, many will have endured pubertal changes that will remain with them for the rest of their lives and most are at risk of severe mental illness as a rection to their unaddressed gender dysphoria.
I hear there are no new referrals being made to NHS paediatric endocrinology at UCLH. There is currently no access to NHS endocrinology and this urgent need must be addressed. People need to understand how you intend to advise NHS England to triage urgent cases and provide care to those who need it today. It is simply not good enough for doctors in this country to be saying that they are not equipped to provide this care. They need to be taught immediately and I am very happy to teach them.
NHS England have implemented your recommendations, saying that, ‘The Tavistock and Portman NHS Foundation Trust and the endocrine teams based at University College London Hospitals NHS Foundation Trust and Leeds Teaching Hospitals NHS Trust will play a vital role in supporting both Early Adopters as they establish the new services building on their extensive experience of working with this patient group.
Service users need reassurance that the proposed training and protocol development will result in a different service than the one that the Care Quality Commission has currently rated as ‘inadequate for being well-led and responsive to patient’s needs.’ Surely it cannot be your recommendation that the current service model continues while you make recommendations on your long term model?
As you know, when we spoke, I was facing GMC Fitness to Practise proceedings and now the outcome of that has been heard. The Tribunal heard evidence from many sources and made this important statement regarding the current GIDS protocols at paragraph 217. ‘The Tribunal also received evidence that some service users found that the rigid and protocol-driven approach at GIDS did not meet their needs in terms of timeliness of interventions and that the protracted and repetitive nature of the psychological assessment phase was intrusive and overbearing. The Tribunal has set out at some length the revision in thinking that was taking place in the mid-2010s that has led to the ‘de-psychopathologisation’ of gender dysphoria in ICD11.’
It is of great concern that the protocols that have been criticised are still being encouraged to be in use, is this your recommendation? Are you certain that your recommendations are being interpreted as you wish, because following the publication of the Interim Service Specifications, even the Professional Associations across the world had to make a statement, saying that, ‘The document makes assumptions about transgender children and adolescents which are outdated and untrue, which then form the basis of harmful interventions.’
These are extremely strong words – outdated, untrue, harmful.
Age of treatment
NHS England state that, ‘In Dr Cass’ latest advice, she restates the position she set out in her interim report with regards to the use of puberty blockers in children under 16 years of age- that there is insufficient evidence currently available for her to make any firm recommendations around their routine use.
Is it actually your recommendation that transgender children should not be allowed to have blockers until the age of 16, when puberty is largely complete?
In my Medical Practitioners Tribunal Hearing, the case of Patient A was discussed. I had prescribed testosterone to him at the age of twelve (he was already on blockers prescribed by GIDS at age 11). The tribunal found that, ‘The cause of Patient A’s anxiety and depression was, in the Tribunal’s view, as plain as a pikestaff: it was the decision by GIDS to withhold gender-affirming therapy until he was sixteen years of age.’ (Para 154)
Patient care must be individualised, and to limit medication on an age basis rather than a basis of need or of a stage of development, is clearly problematic.
You state that you are staying abreast of the literature and of international developments. Since we spoke, the World Professional Association of Transgender Health (WPATH) has published their Standards of Care version 8.
These give very clear and evidence-based recommendations on how to care for transgender people. These recommendations were jointly published by 130 international experts coming together to share their knowledge and expertise and having evaluated the research.
These should be immediately adopted to form the core standards of care that is provided in the UK rather than allow the current UK specialists, who did not take part in the development of these standards, to reestablish their own protocols and care pathways.
One of the allegations that the GMC made against me was that I had failed to follow WPATH guidance, and that of the Endocrine Society. These allegations were not found proved but during their determinations, the Tribunal found ‘that WPATHSOC7 has the status of peer-reviewed expert guidance.’ To not adopt this guidance puts our UK doctors at risk of criticism by their regulator.
The MPTS also found that the University of San Francisco and California (UCSF) Guidelines ‘had the status of peer-reviewed expert guidance’. It was, in other words, ‘the practice accepted as proper by a responsible body of medical men skilled in that particular art’.’ (Para 223)
The WPATH SOC8 and the Endocrine Society Guidelines 2017 and the UCSF Guidelines endorse the use of puberty blockers and gender-affirming hormones after having extensively reviewed the literature. I see absolutely no reason why you cannot recommend that UK clinicians adopt these excellent guidelines, and start providing care to these patients, today.
It is not clear to me why you are recommending that the UK reinvent the wheel, so to speak, rather than follow currently published and widely accepted, peer-reviewed, evidence-based International Guidance authored by a collaboration of so many experts across the world?
I am very concerned that in implementing your advice, NHS England have stated that future care is to be provided under research protocols and that these take time to set up, but they will continue current protocols until then. ‘Research programmes of this nature can typically take some time to establish but we will do everything possible to accelerate usual timeframes, learning the lessons from COVID. In the intervening period, patients will continue to be able to access treatment under current NHS protocols.’
Your initial Terms of Reference describes ‘future research priorities;’ but now it seems that care will not be provided until this research programme is in place and that entering the research programmes will be mandatory.
General Medical Council guidance on good practice in research guides us that ‘You must make sure that people are informed of, and that you respect, their right to decline to take part in research and to withdraw from the research project at any time, with an assurance that this will not adversely affect their relationship with those providing care, or the care they receive.’
Medical ethics is very clear about coercion and undue influence forcing people to take part in research. What does the research involve? How does it differ from audit and service evaluation? Will treatment be available should people choose not to take part? How will their data be secured? These are questions that people need to have answers to during this scary time.
Your recommendations have been interpreted by NHS England and these interpretations that informed the Interim Service Specifications were summarised in the statement made by, WPATH, ASIAPATH, EPATH, PATHA, and USPATH:
‘Serious flaws in this document, which sets out a plan for a service for gender diverse children and young people in England that is likely to cause enormous harm and exacerbate the higher rates of suicidality experienced by these young people in the context of ongoing pathologisation and discrimination.’
Your review holds a lot of power and I urge you to make sure that your recommendations are being interpreted correctly and that they will be keeping our trans youth safe. By all means evaluate the data to inform future best practice, but do not withhold care pending your research programmes.
There are current clinical guidelines in operation in centres of excellence across the world and also in services provided by GPs and Primary Care. Blockers and hormones are an essential part of that care for those who request, and are ready for medical transition.
There are literally thousands of transgender young people who are desperately waiting for care and I do not feel reassured that your review is creating the best chances for them. Old NHS protocols were found to be unsafe, old NHS services were found to be failing and you are ignoring adopted best practice from across the world. Trans children are dying, and something needs to be done. Today.
Dr Helen Webberley