By Milo from Glasgow
Content warning: this article contains an in-depth discussion of deaths and suicides of young trans people, including the suicide of a named trans young adult, Alice Litman. It is also in general pretty depressing, but we believe this is important to report on so that it does not go ignored.
Across the 20th and 21st of June, The Good Law Project and Jo Maugham reported on an increase in deaths of young trans people on the gender clinic waiting list following the Bell v Tavistock ruling in December 2020, which brought in the still-active ban on the use of puberty blockers for trans youth, despite the ruling later being overturned. Writing for Erin in the Morning, Mira Lazine also covered how in the three years following the ruling, there were 16 deaths of young people on the waiting list. In the seven years prior, there was just one. Several of these deaths are revealed in board meeting minutes shared by Maugham to be suspected or concretely ruled as suicides.
This information was brought forward in part by two whistleblowers from the Tavistock (GIDS), one of whom alleged their concerns were ignored by both the clinical director and Dr Hilary Cass. In her review, Cass mentions deaths, specifically suicides, of those on the waiting list in paragraph 5.65, but does not engage with the numbers and how these changed following the suspension of puberty blockers with NHS services for young trans people. The second whistleblower alleged deliberate suppression of this increase in waitlist deaths by management figures.
The meeting minutes shared by Maugham and the whistleblowers do not account for attempted suicides, or capture every death. Starting in January 2022, the minutes from the Tavistock and Portman trust’s meetings stop differentiating between the adult and youth gender services when discussing patient deaths, and later in that same year stops noting whether patient deaths are suspected or confirmed to be suicides. Several sets of meeting minutes from late 2023 have not been published, without explanation. Additionally, NHS Arden & GEM CSU, which has taken over the management of the waiting list since April of this year, does not appear to publish minutes for its board meetings, so incidents from this year are likely to be unaccounted for.
Not discussed in Tavistock’s minutes but recognised by Dr Cass in her review is the significant risk point that occurs when people move from GIDS (youth services) to the GIC (adult services). For many, this means simply being moved from one waiting list to another. Deaths that do occur at this point are recorded in GIC statistics rather than GIDS ones. Some of these cases have been publicly reported on, such as that of Alice Litman, who took her own life in 2022. Following an inquest into her death, the coroner issued a Report to Prevent Future Deaths to NHS England, The Royal College of General Practitioners, Surrey and Borders NHS Partnership Trust, and NHS Tavistock and Portman Trust. This indicates a concern has been recognised legally, for some time, of the risk of suicide being heightened for those on gender clinic waiting lists in the UK.
The organisations to whom the report was issued all responded to the concerns raised, as they were obligated to do. Despite efforts to expand services, NHS England noted that ‘of patients who received their first appointment in November 2023 they had on average been referred 382 weeks previously’. 382 weeks is over 7 years. They detailed their efforts to find new providers, open pilot clinics, and other measures taken. Also mentioned in relation to potentially reducing waiting times is an update to service specifications scheduled to take place this year, but no concrete changes to the way the service is run have been mentioned or indicated in this letter or elsewhere, despite evidence for its consistent failure to provide enough capacity operating the way it currently does.
The response from Tavistock and Portman was similarly vague:
‘We are working … to develop innovative ways of reducing the waiting list and providing support to patients while on the waiting list; this includes the development of new roles including nurse-led triage and peer support workers. While, sadly, this extra workstream will not have had an impact on this case, we believe it will have a significant impact on those waiting for care within the clinic in the future.’
Without specificity about what will be done, how it will address the problem, and what outcomes are being aimed for, it is impossible to evaluate the efficacy of any of what they’re doing. This was also an issue with the new service specification for youth gender services that was put out for consultation earlier this year.
One of the few specific measures stated was one by NHS England: ‘in early 2024 NCMD [National Child Mortality Database] will undertake an initial analysis of completed reporting forms for children and young people who have died between April 2019 to March 2023 with gender distress’. WTT reached out to NCMD to ask for an update on this analysis. They confirmed that it had been carried out and distributed within NHS England to assist with suicide prevention, though they were unable to provide further details on its contents due to privacy and sensitivity concerns arising from how small the dataset is. While this at least has been done and will hopefully achieve something, for far too many people it is already too late.
There is a huge amount of evidence from sources both inside and outside the NHS that long wait times and denial of healthcare are literally costing trans people their lives. The notable increase in deaths reported by Maugham directly follows the decision to stop prescribing puberty blockers, which has been upheld and indeed doubled-down on since the publication of the Cass review, with the outgoing government issuing an emergency ban last month that also includes private providers. Maugham noted that he has been contacted by a number of concerned young people and parents, including reports of attempts by young trans people to take their own lives following the announcement of the ban. It appears that these risks have been known to the NHS and other parties with significant decision-making power since late 2020, with Tavistock’s meeting minutes noting the significant negative effect the ruling was likely to have on patients and staff.
What is deeply concerning is the accusations that concerns about the increase in deaths following the withdrawal of puberty blockers were deliberately suppressed by NHS management staff, with the numbers of deaths before and after the ruling being directly raised and ignored. There is no indication of any intent to address this in the Cass review, any new service specifications, or other documentation released by the NHS. The NHS continues to deny young trans people of any autonomy, while simultaneously refusing to take any responsibility for what it has done.
In response to the publishing of the Cass review, and NHS Scotland and Sandyford’s decision to suspend the use of puberty blockers, young trans people in Edinburgh created ‘Actions Speak Louder Than Words/Sad Trans Snow’. I cannot think of a better way to conclude this article than to leave you with their words.