There are no words to describe the devastation when a life is lost, let alone how much deeper that pain must be felt in cases where the person struggled for years to access the care they needed, and was refused. Whatever the circumstances, our hearts go out to Jayden Lowe’s family who, it is clear, did all they could to help him.
When Jayden approached GenderGP he explained:
I have been on the NHS child and adolescent waiting list for over 11 months now only to find out they won’t even see me because I’m going to be 18 in a few months so I am currently being referred to the adult services but the waiting list is up to 2 years. I currently feel extremely unhappy and impatient. I have waited long enough.
Dr Mike Webberley, a consultant of 35 years’ experience with the NHS, assessed Jayden, together with GenderGP’s multidisciplinary team of nurses, psychologists and therapists. They determined that prescribing testosterone to achieve masculinisation was the correct course of action. There is robust evidence that access to timely treatment can greatly relieve mental distress, particularly in younger gender variant patients who are acutely socially aware of their gender misalignment.
There is no published UK guidance on the care of transgender youth, so the Tavistock and Portman adhere to their own, self-written service specifications. This is clearly dangerous and worrying.
Due to the lack of UK published guidance, at GenderGP we use the published International Guidance from the USA and Australia, and the guidance of the Endocrine Society.
Following this guidance, GenderGP has managed several thousand patients with gender dysphoria who are either waiting excessive times for NHS appointments, or who chose not to use NHS services for their own reasons. During this time, we have become increasingly concerned about stories that our patients have told us about their experiences with NHS services. These have also been well documented in Government Enquiries.
There is just one NHS service (The Tavistock and Portman NHS Trust, (‘Tavi’) for patients such as Jayden, and it has extensive waiting lists which means that all cases fall outside of the 18 week terms of the NHS constitution. Also, NHS England does not provide alternatives or interim support to such patients and many suffer as a result of having to wait for treatment.
“You have the right to access certain services commissioned by NHS bodies within maximum waiting times, or for the NHS to take all reasonable steps to offer you a range of suitable alternative providers if this is not possible. The waiting times are described in the Handbook to the NHS Constitution.”
It is widely known that self harm and attempted suicide is very common in adolescents with gender dysphoria, Stonewall quotes suicide attempts at 45% in this patient group. This figure dramatically plummets following gender-affirming treatment, with levels of mental distress and mental ill-health reverting back to rates associated with their non-transgender peers.
In our own study of over 400 transgender patients, over 50% stated that they had seriously considered self harm and even suicide, as a direct result of their interaction with the medical profession.
The overriding conclusion of the 2016 House of Commons Women and Equalities commission into transgender care, is that:
“The NHS is letting down trans people: it is failing in its legal duty under the Equality Act. Trans people encounter significant problems in using general NHS services, due to the attitude of some clinicians and other staff who lack knowledge and understanding—and in some cases are prejudiced. The NHS is failing to ensure zero tolerance of transphobic behaviour. GPs too often lack understanding and in some cases this leads to appropriate care not being provided. A root-and-branch review must be conducted, completed and published by the NHS.”
Three years later and NHS England services for this patient group have deteriorated exponentially with virtually no action taken to halt the free fall. NHSE talks about ‘money’ and ‘resources’ but these excuses are invalid. It is NHSE processes that are causing the delays and in particular, the clinical and managerial leadership at Tavistock and Portman.
The Women and Equalities report found that:
“There is a clear and strong case that delaying treatment risks more harm than providing it. The treatment involved is primarily reversible, and the seriously dangerous consequences of not giving this treatment, including self-harming and suicide, are clearly well attested.”
Point 253 in Women and Equalities Committee Report
And made the following recommendation:
“Accordingly, we recommend that, in the current review of the service specification and protocol for the Gender Identity Development Service, consideration be given to reducing the amount of time required for the assessment that service-users must undergo before puberty-blockers and cross-sex hormones can be prescribed.”
Point 252 in Women and Equalities Committee Report
However, many distressed parents and teens, such as Jayden, continue to describe the agonising waits and lengthy assessments, as they are refused treatment by the clinicians in this service.
The recent position statement from the Royal College of General Practitioners fails to address the fact that there are no treatment options for those who are waiting for NHS specialist services. Sadly, while this continues, there will be those who feel that they cannot go on. In the absence of provision by the NHS, GenderGP provides bridging hormones for anyone who is waiting for NHS services, as we passionately believe that no lives should be lost while people wait for care.