The Cass Review, led by Hilary Cass OBE, has published its Interim Report today. The report vindicates many of the points we have been making over the past six years regarding the right of children with gender-related distress to receive the same level of clinical care as any other child, especially in light of the poor evidence base and the changed cohort of young people accessing these services.
We welcome the recognition that today’s cohort of young people accessing NHS gender services is very different to those in the past, previous data cannot be used for the current adolescent group of girls, neurodiverse children and looked after children and we cannot predict outcomes of treatment. We agree that there needs to be a fundamentally different service model and a standardised approach in line with other paediatric services, which should be provided by regional hubs and local CAMHS services.
We agree that the current waiting list for GIDS is unacceptable and that children should receive specialist care from local services, including support for any other clinical conditions a child may present with.
We note the several references to clinicians’ concerns about the pressure to adopt an unquestioning ‘gender affirmative’ approach which is at odds with their professional training, and we welcome the recommendation for holistic care and developmentally-informed assessments. We agree that clinicians should remain open and explore the individual child’s experience and the range of support and treatment options available to them, and that specialised training needs to be developed to supplement paediatric professionals’ existing expertise. We agree that it is essential that these children receive the same level of psychological and social support as any other child or young person in distress, and that the same ethical, professional and scientific standards have to be applied as to any other clinical condition.
The report confirms the failings in the current system of gender-related care for children and adolescents. We welcome the focus on safeguarding, standardised data collection, tracking of outcomes and the development of a more robust evidence base for the treatment of children with gender related distress. We agree that children being considered for hormone intervention should have a formal diagnosis and formulation which takes all factors into account, and that the purpose of puberty blockers and the likely outcomes, side-effects and uncertainties about long-term outcomes must be explained clearly.
We are pleased to see reference to peer and social media influence on young people, along with the pressures of societal stereotyping and unrealistic and idealised images. We are also pleased to see the issues faced by detransitioners highlighted, and the need for dedicated NHS services for this group.
We welcome the acknowledgment that social transition is not a neutral act but an active intervention, which may have significant effects on the child or young person in terms of their psychological functioning, and that the important role of schools will be considered during the Review. We are also pleased that another area of consideration will be the referral of 17 year-olds to adult services where they are currently not afforded the same level of therapeutic input.
We are grateful to Dr Cass and the review team for the level of consideration and care taken with the report, not only through the detailed examination of past failings and the development of some measures that can be implemented immediately, but with the tone of the report. The placing of the welfare of the individual child at the centre of everything is apparent through every page, including a letter of reassurance to young service users themselves.
The report says:
- the current service model is not sustainable.
- the unquestioning affirmative approach is flagged in several places in reports from clinicians and therapists who feel that this is at odds with their professional training and standards:
“Some secondary care providers told us that their training and professional standards dictate that when working with a child or young person they should be taking a mental health approach to formulating a differential diagnosis of the child or young person’s problems. However, they are afraid of the consequences of doing so in relation to gender distress because of the pressure to take a purely affirmative approach. Some clinicians feel that they are not supported by their professional body on this matter. Hence the practice of passing referrals straight through to GIDS is not just a reflection of local service capacity problems, but also of professionals’ practical concerns about the appropriate clinical management of this group of children and young people.”
- the current cohort of children is different to historic cases in terms of age and sex; existing data therefore does not apply to this group and outcomes are not known.
- there are significant differences between the NHS approach and the Dutch approach to the use of puberty blockers:
“Within the Dutch Approach, children and young people with neurodiversity and/or complex mental health problems are routinely given therapeutic support in advance of, or when considered appropriate, instead of early hormone intervention. Whereas criteria to have accessed therapeutic support prior to starting hormone blocking treatment do not appear to be integral to the current NHS process.”
The Multi Professional Review Group (MPRG), established by NHS England in August 2021 to review the GIDS’ decision-making process for children referred to the endocrinology clinic, highlights the following areas for consideration:
- a predominantly affirmative, non-exploratory approach, often driven by child and parent expectations and the extent of social transition.
- lack of standardised approach to assessment or progression through the process, which leads to potential gaps in necessary evidence and a lack of clarity.
- limited evidence of mental health or neurodevelopmental assessments being routinely documented, or of a discipline of formal diagnostic or psychological formulation.
- specific safeguarding concerns in a number of cases.
- lack of consistent processes in place to work with other agencies to identify children and young people and families who may be vulnerable, at risk and require safeguarding.
The report recommends:
- Assessments should be respectful of the experience of the child or young person and be developmentally informed. Clinicians should remain open and explore the patient’s experience and the range of support and treatment options that may best address their needs, including any specific needs of neurodiverse children and young people.
- It is essential that principles of the General Medical Council’s Good Practice in Prescribing and Managing Medicines and Devices are closely followed, particularly given the gaps in the evidence base regarding hormone treatment.
- Paediatric endocrinologists should become active partners in the decision making process leading up to referral for hormone treatment by participating in the multidisciplinary team meeting where children being considered for hormone treatment are discussed.
- There needs to be agreement and guidance about the appropriate clinical assessment processes that should take place at primary, secondary and tertiary level.
- Any child or young person being considered for hormone treatment should have a formal diagnosis and formulation, which addresses the full range of factors affecting their physical, mental, developmental and psychosocial wellbeing. This formulation should then inform what options for support and intervention might be helpful for that child or young person.
- It is essential that they can access the same level of psychological and social support as any other child or young person in distress, from their first encounter with the NHS and at every level within the service.
- Within clinical notes, the stated purpose of puberty blockers as explained to the child or young person and parent should be made clear. There should be clear documentation of what information has been provided to each child or young person on likely outcomes and side effects of all hormone treatment, as well as uncertainties about longer term outcomes.
- In the immediate term the MultiProfessional Review Group (MPRG) established by NHS England should continue to review cases being referred by the GIDS to endocrine services.
Although only interim findings, this report provides a solid basis for the improvement of NHS gender services. The report brings the UK more into line with other countries that have conducted independent assessments of gender services, such as Finland and Sweden.
We hope the report fulfills its aim to encourage non-judgemental discussions in a safe and respectful manner so that progress can be made in finding solutions.
We thank Hilary Cass and her team for all their work and we look forward to further findings and recommendations from the review.
The full report can be downloaded here.
Article by Hilary Cass in the BMJ can be viewed here.