Referrals to the UK’s Gender Identity Development Service (GIDS) have increased exponentially since at least 2015. In response to this and the Cass Review, an independent review into NHS provision of trans youth care being carried out by Dr Hilary Cass, the NHS has announced additional support for trans youth. While GenderGP welcomes any move to improve access to care for this patient population, a lack of clarity within the update means it’s difficult to interpret what this means in practical terms for those left in limbo.
GenderGP has looked after over eight thousand patients who have been unable to access the care that they should have received on the NHS – from GPs, hospitals and through GIDS – over the last six years. We have provided essential access to support, counselling, diagnosis, puberty blockers, gender-affirming hormones. In doing so, patients have told us we have ‘saved many lives’ and positively impacted many more.
Providing trans youth with gender-affirming care allows them to maximise their childhood, to re-engage with school, family and social lives, when previously they may have been reclusive and withdrawn. As such we welcome the news that there will be additional support for healthcare professionals referring patients to GIDS.
Below we have highlighted the key points, together with the vital questions that need to be answered and suggestions for how this announcement might be turned into positive action, rather than just being a vehicle for false hope.
‘there is a need to enhance the quality of the referral information being submitted about patients and to help referring clinicians support the additional care needs of children and young people while they wait to be seen by GIDS.’
Will ‘enhancing the quality of referral information’ enable clinicians to support the care of these patients while they wait for their appointment? Counsellors, nurses, doctors need to be equipped with the knowledge to support and prescribe. We want to see training materials, empowerment and clinical guidance to facilitate this.
‘NHS England is establishing interim regional professional support services which will bring together specialists from a range of different clinical backgrounds. They will provide expert advice and support to referring clinicians to help them provide high quality information to GIDS and ensure the best care and support to meet patients’ full healthcare needs while they are waiting to be seen.’
What is an ‘interim professional support service’? For every other branch of medicine, this is a GP surgery and a regional hospital, a resource which already exists. Care for trans youth needs to be available at a local level using these existing resources. Training and education is essential to allow the GPs, paediatricians and endocrinologists in local hospitals to safely provide this care, without fear of recrimination.
‘This will be through early consultation between the regional professional support services and the healthcare professional making a referral’
If this early consultation allows the care to be provided then we wholeheartedly welcome this move. The damage that takes place whilst young people are on long waiting lists can be alleviated by timely access to gender-affirmative support, puberty blockers and hormones. If on the other hand it is just discussion, it is in danger of further delaying the process.
‘This will be through liaison and support to the professional network while the patient remains on the waiting list for GIDS (including GPs, children and young people’s mental health services, paediatrics, education services and local authorities)’
What does ‘liaison and support’ actually mean? How will the NHS increase the capacity within GIDS to actually allow GPs, mental health services and paediatrics to provide care? In the same way that delaying cancer care costs lives, so does delaying gender care. This must be acknowledged and a realistic solution identified. Again we have the network of healthcare providers already in place.
‘This will be through identifying more complex cases that might need more urgent support, in consultation with GIDS, including providing advice to referrers’
The most complex cases are created by GIDS through their excruciatingly slow processes and long waiting lists. The most complex cases are young people so distressed by their gender dysphoria that they are unable to function. By providing timely, gender-affirming care, when it is needed by the patient, complex cases are reduced and even eliminated altogether. We know this because at GenderGP we do not have a caseload of complex cases. Instead we have a proven model of care which results in a caseload of happy teenagers who are free from the fears of the wrong puberty, and who are progressing through the puberty that matches their gender.
‘This will be through coordination of any additional healthcare support services – including psychosocial and psychological support – according to a patient’s needs’
The absence of any mention of medication is notable here. Young people need to be reassured that they will have access to the blockers and hormones they need to help them to progress in their gender. Psychological support is an essential part of the process, for those who want it, but it should not be the only solution. Proven treatment protocols are available in other, more progressive, parts of the world, surely all trans youth deserve the same access to care?
‘This will be through coordinated transfer to appropriate adult services where young people are within six months of their 18th birthday.’
Currently, many young people who are deemed too old to start treatment with GIDS are passed on to adult services, where they find themselves on the end of a 4-5 year waiting list. Even more distressing is that those who end up on the waiting list for adult services have already had to navigate the GIDS waiting list and have subsequently aged-out of the service. We urgently need reassurance that youth will have access to care when they need it.
Finally, we are promised that this service will take a few months to set up and that updates will be available on the GIDS website shortly. But how does that reassure those families who have had no access to medical care since the Bell v Tavistock judicial review in December 2020, and those who have been on a seemingly endless waiting list for years?
These patients and their carers deserve better. They deserve urgent reassurance that steps are being taken to ensure that this care will be provided and when they can expect it.
We need an increase in awareness, urgent mandatory education and evidence-based policy in high places. We would also welcome input from Dr Hilary Cass on the proposals, and for her to call for further clarity.
GenderGP is the largest provider of care to trans people in the UK, and we welcome discussions with the NHS on how we can step in and provide urgent care while the NHS services become fit for purpose.
If you are waiting for NHS care, we can help provide support and medication. We will write to your GP and to GIDS on your behalf, and urge them to provide the care you need. Contact a member of the team.
If you are a healthcare professional requiring education and support in this area, then please get in touch.
Photo by Mercedes Mehling on Unsplash