NI Cass Review: Health committee member hits out at puberty blocker trial - saying children aren't 'test subjects'
Children should not be “treated as test subjects for medical interventions” under Department of Health plans to participate in a UK-wide puberty blocker trial, a member of Stormont’s health committee has said.
Diane Dodds’s comments come after a review by clinician Dr Hilary Cass into Northern Ireland’s gender services – which said that “rigorous and demanding” changes are being made to meet health minister Mike Nesbitt’s commitment to be part of the scheme.
Puberty blockers are drugs which suppress normal physical development in children, and have been used on children questioning their birth sex. Mr Nesbitt banned their prescription here over safety concerns – but the UK government plans a trial recommended in the original Cass Review, which he supports.
Baroness Cass said significant staff training and changes in clinical processes will be required if the local transgender clinic is to be part of the controversial scheme.
She was invited to the province last year to carry out a short review, after the UUP minister after a backlash over his announcement of funding for a “Lifespan” service with no lower age limit on referrals.
The Department of Health (DoH) said it will now consider the recommendations and work alongside counterparts in England, and local Health and Social Care (HSC) service providers to implement the recommendations.
Dr Cass’s review says the NI service is working on “two levels of compliance” with regard to the original recommendations from her landmark report into transgender services in England, which raised questions about the safety of using puberty blockers – and recommended clinical trials.
The first is aligning clinical practice in NI to bring standards of care in Northern Ireland in line with England.
“The second level of compliance is more rigorous and demanding, and is based on Northern Ireland’s commitment (and the support by the Minister of Health) to be a research site within the Kings College London puberty blocker trial and the wider PATHWAYS research programme”, the report says.
The confirmation of a push to take part in the UK trials has prompted concern from the DUP’s Diane Dodds, who says “children should not be treated as test subjects for medical interventions with potentially irreversible consequences”.
The Upper Bann MLA said: “This is madness. Children experiencing distress deserve compassion and safeguarding not experimental medical pathways.
“Puberty blockers were removed from routine clinical use because of serious unanswered questions about their impact on brain development, bone density, fertility and mental health.
“It is deeply troubling that more than 220 vulnerable children could now be exposed to the same drugs under the banner of research and that Northern Ireland children are included in this.”
A study underway in England, which the NI service aims to be part of, is looking at the experience of children referred pre-puberty. The report states that there is “a very small subgroup of children whose gender incongruence persists long-term and who may require ongoing support and possible medical intervention”.
The Cass Review says that there are three “essential pre-requisites” for inclusion in the trial, including that data collection and the “holistic assessment framework” is in line with England – and that documentation is in line with the national scheme.
The report found that the NI lifespan service has “some distinct advantages” over English equivalents – such as an existing link with CAMHS services, which was described as “an important benefit of the NI service” by Dr Cass. She found that children in Northern Ireland benefit from these arrangements, which contrast with historical arrangements in England, where direct GP referrals “created an undifferentiated caseload of young people with complex presentations”.
The report highlights safeguarding concerns – including “parental motivations” – which may drive social transitions of children “inappropriately”, requiring “careful assessment”.
Baroness Cass’s review also gives some detail on the demographics of children presenting to the health service with gender issues. Many of the children attending CAMHS services over gender identity issues have a history of trauma and bullying and many are “known to ASD [Autism Spectrum Disorder] services”. They are commonly presenting at 12-13 years old, are more commonly girls, who are often same sex attracted. There were also “instances of children presenting from the same school and class”.
It also found that between 60-80 children are referred to KOI each year – lower than elsewhere in the UK. Adult services handle approximately 150 active patients and around 25 new adult patients monthly – with a waiting list of about 1,200 patients. The service also provides “safety monitoring” of hormones for adults accessing drugs from unregulated providers.