The NHS Transgender Youth system is broken. For many years, the Gender Identity Development Service (GIDS) has received feedback that its protocols are causing harm. It has been accused of failing to facilitate joint decision-making and individual management plans,, and concerns have been raised by trans lobby groups and patients alike. There have also recently been complaints from colleagues and ex-employees. This resulted in the launch of an independent review into GIDS services.
The final straw has come in the interim, with a request for judicial review, as a result of which GIDS has withdrawn care to hundreds of children and adolescents under their direct care, and the support they were providing to GPs.
A historical lack of standards and provision of training and education has kept the treatment of transgender youth under just one NHS provider – GIDS. This has meant that as the number of referrals has grown, in line with an increase in acceptance and vocalisation of trans issues in the community, they have not been able to supply the care needed to match the demand.
Gender incongruence of childhood and adolescence is currently categorised as a highly specialised service, which should deal with less than 500 cases per year. The number of referrals was already nearly three times this in 2015. Training and education should have been implemented once the referral figure began to rise so dramatically, so that local hospital paediatric and general practice services could step in to provide care.
The increase in the number of referrals is not unique to the UK, it has been mirrored across the world. And we have seen medical centres in the USA, Australia and New Zealand produce valuable, evidence-based guidelines to allow GPs, hospital consultants, nurses and other healthcare professionals to provide this care. The UK has not mirrored this research and education, and their clinical protocols follow outdated views on how trans healthcare should be provided.
The long waiting lists and lengthy assessment periods that are in place before any young person can access medical intervention has meant that many adolescents have experienced life changing, significant physical changes, and the associated mental impact, which could have been avoided if their GP or local hospital could have intervened with a fully reversible puberty blocker.
The rigid UK protocols that are in place at the start of any medical intervention for a young trans person, mean that they are then forced to have a blocker for at least a year before the notion of having an induced puberty to match their identity is even considered. For those who have already gone through a natal puberty, this feels futile and does not relieve dysphoria. For those who were able to access blockers under the GIDS Early Intervention Study, this means many years of suspended puberty and has led to the recent concerns raised of the effects on bones and brains of this protracted time, during adolescence, with no psychological or physical pubertal development.
The lack of published evidence to support their practice, along with the conflicting Service Specifications and GIDS own policies that do not match International opinion, caused concern for the court in the case of Bell and Mrs A versus The Tavistock. The judge determined that, based on the information presented to the court, a young person could not conceivably understand enough to consent to a treatment such as blockers.
This was not because of a lack of effectiveness or merits of such treatment, but due to the fact that in line with GIDS protocols, the blocker always preceded the hormones, and hormones seemed to inevitably follow the blocker. Combined with a potential period from age 10 to 16 of suspended puberty, it was concluded that the process was tantamount to asking a 10 year old to consent to a lifelong treatment with gender-affirming hormones, and to understand what long-term effect the blockers may or may not have had during the period that spanned ages 10 to 16. Understandably, the courts were concerned.
The issue of consent is complex. In standard medical practice, if a patient lacks the capacity to be able to understand a proposed treatment, then someone with legal responsibility would step in. However, GIDS protocols do not allow for a parent to consent on behalf of a child, and they have never asked the court to help determine tricky individual cases where there is conflict of opinion. Once again, this diversion from standard medical practice allows risk of harm and means that treatment is withheld when it could be needed.
We help teenagers who have nowhere else to turn
GIDS must have felt rather isolated over the past years. It was not supported by NHS commissioners in this court case and it does not appear to have had the support and protocol revision promised to them. There have been no standards of education set requiring doctors to learn basic skills to support this patient group, and Royal Colleges, Medical Schools and Postgraduate Deaneries have been allowed to fall behind in this area of medical education and skill-setting.
The outcome is that patients are now without care. GPs have had the support they need from GIDS withdrawn, and patients have had appointments and referrals cancelled. There has been no backup plan and no emergency intervention, nobody appears to know what is going to happen.
We have heard of distress, self-harm, isolation and suicidality amongst this patient group.
Now we need action.
Key Questions:
- Can my GP prescribe a blocker for my child as a temporary measure to relieve the distress caused by pubertal development? – YES
- Is this reversible should my child not wish to progress onto gender-affirming hormones? – YES
- Will this cause a reduction in harm to this patient group? – YES
- Can we help make this happen? – YES
Education
‘The Guidelines for the Primary and Gender-Affirming Care of Transgender and Gender Nonbinary People’ published by the University of San Francisco (UCSF), and other International Clinical Guidelines can be used to inform professionals while the UK produces its own guidelines.
The GenderGP Guide, ‘TRANSGENDER HEALTH – Helping your trans patient to live their life more easily’ evaluates UK guidance on whether a UK GP or other prescribing practitioner can feel comfortable in taking on this responsibility after carefully balancing the risks versus the benefits of medical intervention to this patient group.
Action
The community and its allies must come together to request urgent improvements in UK transgender health services. By standing together and letting our names be counted we can show the true reality of the strength of feeling that exists on the matter and the need for action.
For a detailed analysis of the Determination of Bell and Mrs A versus The Tavistock, please see here.