Margaret McCartney is a GP in Glasgow and writes for various bits of the media mainly about evidence based medicine
I do not doubt that the vast majority of healthcare practitioners actively want to do ‘the right thing’. So what happens when you start to doubt that you are?
Hannah Barnes has written a detailed account of what happened at the Tavistock and Portman NHS Foundation Trust’s Gender Identity Development Service (GIDS). Starting in 1989, as a service for children and young people, in June 2022 the interim Cass report, commissioned by NHS England and NHS Improvement, recommended that it should close and be replaced by a new model. Demand for it is not in doubt. The GIDS website reports that it had 210 referrals in 2011, and 3,585 in 2021.
Hannah Barnes has written a detailed account of what happened at the Tavistock and Portman NHS Foundation Trust’s Gender Identity Development Service (GIDS).
Barnes describes how this rise, with the background fundamental tension of what best practice should be, led to the service becoming overwhelmed, and disputes -from both patients and members of staff – being taken to court. Bell vs Tavistock concerned whether puberty blockers (gonadotrophin-releasing hormone agonists) could be prescribed for under-16s. (Keira Bell, who had been a patient at GIDS and regretted medical intervention, lost at appeal). Class actions from patients are being reportedly raised. Sonia Appleby, the safeguarding lead for children, won an employment tribunal after raising a whistle-blowing claim that resulted in a “full blown organisational assault” after reporting concerns. Barnes writes “rather than tackle the safeguarding concerns being raised about GIDS, the Tavistock Trust had instead attempted to penalise the person raising them”. (page 315)
Starting as a niche clinic for “children with these rare and unusual experiences” (page 10) of having a “gender identity that didn’t seem to match the biological body they were born with” the service expected that “only about 5%” of young people they saw would “commit themselves to a change of gender” and for 60-70% to become homosexual. There was emphasis on caution, recognising and treating other conditions alongside, and “therapeutic work”. Guidance from the Royal College of Psychiatrists at the time stated “A large element of management… is promoting the young person’s tolerance of uncertainty and resisting pressures for quick solutions”. (page 14).
Uncertainty is what medicine deals in, to a greater or lesser extent. Even for conditions which should self-resolve, when perceived or actual pressures exert themselves, it can be hard not to react. Good medicine tries to acknowledge unknowns, and mitigate potential harms through honesty and high quality research. When something happens – for example, such a remarkable rise in referrals to gender identify services, with a concurrently changed demographic (from older males to younger females), it should be incumbent on the profession to seek to understand why, especially when offering irreversible interventions.
“Time to think” is what puberty blockers were described as offering.
“Time to think” is what puberty blockers were described as offering. Originating in the Netherlands, the ‘Dutch protocol’ promoted their use in selected patients from age 12. Despite knowing that most children with gender dysphoria would solve their distress without the need for medical intervention during puberty, the medication could avoid secondary sex characteristics developing. These could be followed by cross-sex hormones at 16 and surgery at 18. (page 39) GIDS, Barnes writes, found itself in an invidious position. “On the one side there was the voice of trans groups like Mermaids and GIRES, who saw physical interventions as ‘the main way of reducing distress in early adolescence’ and a ‘lifesaving intervention in the face of suicidal and self-harming behaviour’; on the other were those of many colleagues in the Tavistock Trust and outside, who ‘had the view that adolescents should only be offered physical and psychological support but not the possibility of any physical intervention”. (page 43)
The service – initially taking referrals from health and social care workers, as well as “schools, social workers…charities and youth groups” (page 114) recruited more staff to try and keep up, who were often junior. Workload spiralled. While it is clear that many members of staff tried to do as much exploratory and supportive work that they could, “the emphasis was on….getting the waiting list down” (page 136). When GIDS’ own audit found that the new referrals for the use of blockers was reported by young people as “highly satisfactory”, also, in the words of the Director “we haven’t seen any change in terms of psychological well-being” – with increases in the number reporting “I deliberately try to hurt or kill myself” (p117). In what is described as a ‘holy fuck’ moment for one ex-member of staff, the data showed that all the children given puberty blockers proceeded to cross-sex hormones. “It totally exploded the idea that when we were offering the puberty blockers, we were actually offering time to think….because what are the chances of 100 per cent of people, offered time to think, thinking the same thing?” (p118)
Barnes narrates the stories of individuals who feel they were helped by GIDS, both by medical intervention and supportive care without medical intervention. She also includes the stories of people who describe profound harm through the medical interventions they had. There are several salient points.
The first is the risk that healthcare organisations run when worries from staff translate into organisational defensiveness. When a staff member wrote a report summarising concerns, it was criticised by the Trust, which “sent a message to everyone that if you spoke out, you would be vilified” (page 358). But surely the best organisations keep constructive critics in house and usefully close at hand. The second is money: the income GIDS brought to the Trust represented 5.9% of total income in 2015/6 and 13.5% in 2018/19. (page 184). Deficits for 2022/23 mean that ‘the Tavistock may run out of money in 2022/23 and will need help to survive”. (page 363). Then there are relationships to charities and lobby groups. Working with patients and families is generally seen as vital, but “where ideology impacted GIDS so strongly was in the service’s inability to keep an appropriate distance from charities and support groups like Gendered Intelligence and Mermaids”, who would go to the Director of GIDS directly, and “demand clinicians be reprimanded or switched, and the service go further and faster with physical interventions”. (page 364 )
And that is the most pressing issue. Medicine should hear multiple voices – but act independently and on the basis of evidence. Even well intended individuals, acting on no, or poor quality evidence, can still do much harm.
Featured book: Time to Think: The Inside Story of the Collapse of the Tavistock’s Gender Service for Children by Hannah Barnes
Swift Press, Feb 2023, 466 pages, ISBN: 978-1800751118, RRP £20 (hardback)