At the end of March, the UK welcomed International experts including Dr Johanna Olson-Kennedy, Medical Director of The Center for Transyouth Health and Development at Children’s Hospital Los Angeles, for a series of events aimed at better understanding the healthcare options available to younger gender variant people.
The aim of the events, which included a one-day inter-disciplinary conference entitled, ‘(Re)Thinking Trans Healthcare: Bridging the Gap between Policy, Practitioner and Patient’ and a parent focused Q&A entitled ‘If your child says they are transgender, they probably are.’ provided a much-needed platform from which to discuss the current protocols for trans youth care in the UK and how they compare to more progressive approaches, such as the one coming out of Los Angeles.
In a bid to get some clarity on UK protocols, I recently put in a Freedom of Information (FOI) request which has revealed that, despite the Service Specification for the care of transgender young people in the UK making reference to standards informed by NICE guidance, no such guidelines exist for the treatment of children and adolescent patients in the UK.
In 2016, the Women and Equalities Report on Transgender Equality acknowledged legitimate concerns among young gender variant people and their families about the clinical protocols regarding access to puberty-blockers and gender affirming hormones. The report also acknowledged the potentially damaging consequences of failing to provide, or unnecessarily delaying, such intervention for very vulnerable young people, including the risk of self- harm and attempted suicide.
In response, the Tavistock and Portman Clinic, as the only NHS Specialist Service in the UK providing treatment to gender questioning children and young people under the age of 18, promised to review the Service Specification for services commissioned by NHS England.
NHS England (NHSE) is the operating name of the NHS Commissioning Board, and while it is autonomous in operational matters, it works to an overarching “mandate” set by the Secretary of State for Health. In addition to its role as a direct commissioner of some services, it also has a quasi-regulatory function in respect of Clinical Commissioning Groups.
Section 4.1 of the NHS Service Specification refers to the treatment protocols being in line with ‘Applicable national standards e.g. NICE, Royal College’. It also goes on to say that ‘The Service will be delivered in line with: NICE guidelines specific to the treatment of mental and emotional health and wellbeing including for psychosis, anxiety and depression.’ The Specification goes on to make a further reference to the ‘Applicable national standards e.g. NICE, Royal College.’
However, my freedom of information request to NHSE to gain access to those ‘applicable national standards’ has revealed that no such standards for the care of transgender youth exist. In its response NHS England states that it ‘is not aware of any guidance or standards published by NICE or a Royal College of medicine relating to the treatment of gender dysphoria in children or adolescents.’ It goes on to explain that: ‘The references to NICE and to a Royal College are merely given as examples of the types of service standard that could be described in that section of the specification,’ .
There has been much debate and discussion around the right approach to gender-related healthcare for transgender children and young people. Healthcare professionals look to the Service Specifications and associated guidelines to provide the necessary background and context that informs the care provided. Without this concrete guidance, not only are healthcare professionals at a loss as to the best course of treatment, but patients are left high and dry, without recourse.
The risk of harm to gender variant patients is real and severe, as confirmed by the Youth Chances survey of nearly 1000 youngsters, carried out by Stonewall in 2014. The survey revealed 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. The survey also revealed that 72 per cent of respondents have self-harmed at least once.
The suggestion that the Service Specification is based on applicable national standards such as those laid out by NICE is untruthful and misleading. It attempts to reassure both doctors and patients alike that standards expected of healthcare professionals have been created in line with leading medical bodies, where in fact no such standards exist. This needs to be addressed urgently and I have written to request that the Service Specifications are rewritten to reflect this error.
On its website, NHSE publicly acknowledges that ‘Patient and public participation is an essential component of commissioning, and should be considered at all stages of the commissioning cycle (planning, buying and monitoring health and care services).’
However, my complaint and request have been dismissed on the grounds that as ‘a healthcare professional, a member of the public and an advocate for people with the protected characteristic of gender reassignment’ she does not meet the criteria for a complaint investigation. NHSE passed the comments on to the gender identity team for them to ‘issue a response if they consider it appropriate’ on 6 March 2019. No comment has been forthcoming. NHSE have closed the complaint, declining to take further action.
NICE has confirmed that they ‘do not currently have plans to develop a guideline on the topic of healthcare of transgender patients, but have agreed with NHS England to review this decision in 12 months.’