HSE officials opted not to pull puberty blocking treatment at Crumlin hospital

Decision taken despite High Court ruling in London against Tavistock House NHS Trust

Keira Bell (24) took legal action against the Tavistock NHS Trust, arguing that children cannot properly consent to taking puberty blockers. File photograph: PA

Keira Bell (24) took legal action against the Tavistock NHS Trust, arguing that children cannot properly consent to taking puberty blockers. File photograph: PA

 

Senior figures in the HSE decided against withdrawing puberty blocking treatment at Crumlin Children’s Hospital in the wake of a High Court ruling in London in December, according to internal communications seen by The Irish Times.

They were of the view that the “risk of withdrawing treatment on foot of ruling in another jurisdiction represents far higher risk to patients than continuing treatment and we support clinicians in same”, according to an email circulated a week after the judgment.

A three-judge Divisional Court of the High Court in London delivered a ruling on December 1st in which it described puberty blockers as an “experimental treatment” and said that it was not possible for patients aged under 16 years of age to give the required legal consent.

The court found against the Tavistock NHS Trust, which argued that having the courts decide whether a child or young person should get the treatment would be an intrusion on their autonomy.

Puberty blockers stop changes to the body that occur with the onset of puberty and can be used to help people suffering from distress arising from unhappiness with their natal gender.

The extent to which the effects of the treatment are “reversible” once the treatment is ended, as well as the likelihood that those who receive the treatment go on to receive more obviously irreversible treatments, were among the matters considered by the London court.

Tavistock has been assessing Irish child and adolescent gender dysphoria patients for the past decade under an arrangement funded by the treatment abroad scheme, but which involved a team from the English clinic visiting Crumlin hospital on a monthly basis.

The London court’s ruling was “clearly not applicable in this jurisdiction, but likely to have an impact”, said the HSE’s national clinical lead and group advisor for mental health, psychiatrist Dr Siobhán Ní Bhriain, in a December 7th email to colleagues. She said the State Claims Agency would have to be consulted and that the HSE should get its own legal advice.

A “comfort letter” was subsequently issued to Crumlin in which it was noted that Tavistock provided the service that was the subject of the London court’s ruling, that Tavistock referred patients to Crumlin, and that the hospital had identified a “small number” of patients who have been deemed appropriate for hormone-blocker therapy.

“In discussions with the legal representative of the State Claims Agency it has been made clear that there are no barriers to this practice in Ireland and therefore [the hospital] will be indemnified by the State Claims Agency in the usual way,” said chief clinical officer Dr Colm Henryin the letter.

The HSE, he said, was going to “redouble” its efforts to put in place an Ireland-based multidisciplinary service to meet the needs of young people.

Sustained controversy

Tavistock has been the subject of sustained controversy over recent times, with a former governor of the clinic, Dr David Bell, saying in January that colleagues had approached him in 2018 with concerns that “very disturbed children” were being inappropriately “pushed through” to transition gender.

In a November 26th, 2020, email to Dr Philip Crowley, national director of the HSE’s Quality Improvement Division, Paul Oslizlok, a consultant at Crumlin, said “confidence in the unit in Tavistock has been somewhat undermined by recent negative publicity”.

In a briefing paper to the HSE submitted in October 2020, Children’s Health Ireland (CHI), which runs Crumlin hospital, said there was “less than 20 active patients” attending its gender endocrinology service and that the waiting list for children and adolescents with gender identity issues was “significant”.

The case against Tavistock was taken by two women who did not argue that treatment with puberty blockers was never appropriate, but did argue that it was not possible for those under 18 to give informed legal consent.

One of the women, Quincy (Keira) Bell (24), was a natal female who transitioned to a male. She began taking puberty blockers at the age of 15, and subsequently underwent surgery. She now self-describes as female.

The second claimant, who was not identified, was the mother of a 15-year-old girl with autism who was concerned that her daughter might be referred to Tavistock and be prescribed puberty blockers.

The court did not rule on whether administering children and adolescents with puberty blockers was beneficial or otherwise, but rather whether such patients were in a position to give informed consent.

“The approach of the defendant [Tavistock] appears to have been to work on the assumption that if they give enough information and discuss it sufficiently often with the children, they will be able to achieve Gillick competency [the legal test for consent],” said the judges. “We do not think that this assumption is correct.”

The court ruled that for patients who had not reached their 16th birthday, court approval would be required before the treatment could be administered.

Referrals to Tavistock in the UK had gone from 97 children and young people in 2009, to 2,519 by 2018, the court was told. The gender split, which had been 50/50 in 2011, was 76 per cent natal female by 2019.

The court was told there was evidence that the number of young people with gender dysphoria who had autistic spectrum disorder was higher than was the case for the population generally.

In the October 2020 briefing paper prepared for the HSE, CHI said “gender identity issues may exist in isolation or as a manifestation of a more complex underlying psychological or psychiatric illness”. It noted that the endocrinologist at Crumlin who had a special interest in transgender services had resigned in September 2020 and that a “significant reason” for the resignation was the failure to establish a multidisciplinary team and agree a model of care. “The decision to embark on a medical transition journey for young people without comprehensive specialist multidisciplinary psychosocial team assessment and support can lead to catastrophic outcomes,” the report noted.

The documents released by the CHI under Freedom of Information (FoI) include a letter from three endocrinologists at Crumlin hospital in April, 2018, to Helen Shortt, the then chief executive of the hospital, saying the growing numbers seeking the gender service were making the hospital’s arrangement “unsustainable”.

The number of referrals to Tavistock in the UK had gone from 97 in 2009, to 2,016 in 2016, while the number of referrals in Ireland had gone from zero in 2009, to 35 in 2016. If the UK demand for 2016 had been the same here, on a per capita basis, the potential number of Irish patients for that year would be approximately 150. “The figures indicate there will likely be an increase in referral numbers once a service and a clear referral pathway are established,” they said.

The endocrinologists included an “appeal for clarity” in relation to a number of issues, including what to do with the adolescent patients who were reaching an age where they should be transferred to the adult service in St Columcille’s Hospital, Loughlinstown, Co Dublin.

There was a long waiting list for adult service, they said, and “a potential freeze on acceptance of referrals from our centre due to the documented concerns of certain healthcare professionals regarding historical and current input of the Tavistock service”.

A number of the clinicians working at the national adult gender clinic at Loughlinstown have expressed significant concerns about Tavistock, basing their views on the patients they have seen who have previously received treatment at Crumlin.

The documents released under FoI include emails from consultant psychiatrist Paul Moran, who works at the Loughlinstown clinic. In an email dated February 4th, 2020, he contrasted the response of the UK’s National Health Service to expressions of concern about Tavistock to that of the HSE which, he said, “as recently as last week stated they had no concerns about the service”.

In an email dated January 29th, 2020, he included a link to an interview Ms Bell had given the Mail newspaper about her case against Tavistock. “It is only a matter of time before we will have cases taken against the HSE by some of the children currently attending Crumlin,” said Dr Moran. “The same gender service (Tavistock GIDS) implicated in the case above continue to recommend hormone treatments for children without adequate assessment.”

Tavistock, which is appealing the London court’s ruling, has said it thoroughly assessed all patients that it recommended for puberty blockers.

A spokeswoman for the CHI said the HSE is working on the establishment of a multidisciplinary team to run the gender dysphoria service in Ireland. A consultant paediatric endocrinologist is to be employed.