Online clinic GenderGP ignores ruling on puberty blockers The Sunday Times 06.12.20

The original article is here.

A private clinic set up by a suspended GP has vowed to keep prescribing puberty blockers to children despite a High Court ruling that under 16s are unlikely to be able to fully consent to the “experimental” treatment.

Three judges said on Tuesday that it was “highly unlikely” a child under 13 was mature enough to consent to puberty blockers, and it was “doubtful” that 14 and 15-year-olds could “weigh the long-term risks and consequences”.

The landmark judgement means court approval will be needed before puberty blockers can be prescribed to children in England and Wales who are confused about their gender identity.

NHS England immediately updated its guidelines to state that a court order must be sought for any new referral for such medication.

The Tavistock and Portman NHS Foundation Trust, which runs England’s only specialist gender service for young people, has suspended new referrals for puberty blockers for under-16s and is reviewing existing patients’ cases.

But GenderGP, a clinic that treats children in England through doctors based in Europe, said it would continue to prescribe the drugs as normal, bypassing the high court ruling.

In a live broadcast on Facebook on Thursday, founder Helen Webberley insisted the consent process used by the clinic was “robust” and said it would be “continuing to prescribe blockers for people who are on blockers, and continuing to prescribe new blockers for anybody who is able to give consent to that treatment”.

Webberley is barred from practising in the UK after she was convicted of running an unlicensed practice treating 1,600 transgender patients and gender dysphoric children from her home in South Wales. She was fined £12,000 by a judge in 2018 who said there was a “clear refusal to follow the law”, while the regulator said she posed a risk to patient safety.

The clinic had been linked to the death of 18-year-old Jayden Lowe, who took his own life after taking drugs prescribed online following a six-year wait for NHS treatment. Afterwards, his mother said Webberley and her husband, a fellow doctor who was also subsequently suspended, had “taken advantage of a person in a bad situation”.

The Webberleys moved to Spain and GenderGP was acquired by Harland International Ltd, an LGBT advocacy organisation based in Hong Kong. Helen remains a non-medical advisor and is on the website’s front page.

Despite being overseas, GenderGP has continued treating patients in England using a legal loophole which means drugs prescribed by doctors in the European Economic Area can be dispensed in the UK, allowing young people to circumvent some NHS safeguards and waiting lists.

Webberley insisted last week that the consent process used by the clinic was “robust” and repeated a claim that puberty blockers were “reversible, well evidenced and safe” — despite the High Court ruling their use in gender dysphoric children was an “experimental” treatment with “potential lifelong and life-changing consequences”. “GenderGP will stand firm for the rights of children, adolescents, adults, elderly folk, anybody, and will keep fighting for as long as it’s needed,” Webberley said.

The clinic, which charges £195 as a “set up” fee and £65 for an initial consultation, has also started a fund to collect donations to “help patients who are no longer able to access the care they need via the NHS”. There are 246 young people in England currently under its care.

As well as clinics based overseas, puberty blockers and cross-sex hormones are sold widely on the internet by illegal online pharmacies.

One website is described in a forum as being widely used by transgender people who are “self-medicating”.

To place an order, internet users enter a name, email address and payment details. They are asked to confirm they are over 18 but this is not checked.

Gino Martini, chief scientist at the Royal Pharmaceutical Society, said online suppliers could be used to “short-circuit” official processes. “Young people have been able to access drugs with no proper consultation involved,” he said.

The High Court ruling last week has been described as “an historic judgment” that would be looked at by leaders of other countries and states in the US, where public debate about interventions for transgender young people is also fierce.

The case was brought against Tavistock and Portman NHS Trust, which runs the Gender Identity Development Service (GIDS) by two claimants — Keira Bell, 23, who was prescribed puberty blockers by the Tavistock, and the mother of an 15-year-old girl with autism awaiting treatment at the clinic — who argued that puberty blockers should only be given to under 18s with court approval. Bell, who said she had hot flushes, “brain fog” and other symptoms after starting blockers, went on to take testosterone and have a double mastectomy at 20 but now lives as a woman after “detransitioning”.

At a High Court hearing in October, the claimants’ lawyers said there was “a very high likelihood” children who start taking hormone blockers will later begin taking cross-sex hormones, which they say cause “irreversible changes”.

Dr Annelou de Vries, who leads the Centre of Expertise on Gender Dysphoria at the Amsterdam University Medical Centre in the Netherlands, told the court that only 1.9% of adolescents given puberty blockers there stopped the treatment and did not proceed to cross-sex hormones. She said the treatment was “fully reversible”.

GIDS said the drugs — which delay the usual signs of puberty, such as facial hair or breast growth — gave children “time to think”.

In their ruling, Dame Victoria Sharp, sitting with Lord Justice Lewis and Mrs Justice Lieven, concluded blockers were “not a neutral process” but a “stepping stone” to cross-sex hormones, which could “increase the likelihood” of them moving on to further treatments that damage fertility or impact relationships. “For many children, certainly younger children, it will not be possible to conceptualise not being able to give birth to children,” they said.

They said the “highly complex and potentially lifelong and life-changing” consequences were something a child would have “enormous difficulties” weighing up.

While the drugs had long been prescribed to children going through precocious puberty, they said the evidence base for the long-term effects in gender dysphoric children was “highly uncertain” and that the treatment was therefore “experimental”.

They also raised concerns about the rise in the number of people being prescribed blockers, particularly girls. In 2011 the gender split at GIDS was roughly 50/50 between natal girls and boys. However, in 2019 the split had changed so that 76 per cent of referrals were natal females.

The number of referrals to the Tavistock’s gender service overall has risen sharply in recent years. In 2009, 97 children and young people were referred. In 2018 that number was 2,519. In the year 2019-20, 161 children were referred to the service for puberty blockers, with 26 of those aged under 13 and 95 aged under 16. Three of the children were 10 or 11.

In summary, they ruled that children could only have the treatment if they gave properly informed consent, but that “there will be enormous difficulties in a child under 16 understanding and weighing up this information and deciding whether to consent to the use of puberty blocking medication”.

They said given the “long-term consequences” and experimental nature of the treatments, it may be appropriate to involve the courts in decisions involving 16 and 17-year-olds too.

The ruling does not affect Scotland, where referrals of children to its youth gender service have risen sharply. A government spokeswoman said it was “not for the Scottish Government to comment on the court action taking place in England and Wales” but that it would “consider the detail” of the judgement.

The Sandyford clinic in Glasgow had 298 referrals in 2018, with referrals for those aged between four and ten rising by more than 80 per cent in a year. It said there would be “no changes” for its patients as the clinic follows Scottish guidelines. It currently has a waiting list of 2.5 years and does not accept patients from England.

The General Pharmaceutical Council, which regulates pharmacies in England, Wales and Scotland, said: “We are carefully considering Tuesday’s High Court ruling and any actions we should take as the pharmacy regulator.”

Gendered Intelligence, a charity for transgender youth, said it was “in shock” at the ruling and said it could cause anxiety among young people. It said it would push them into a “grey market where they cannot undergo robust medical monitoring” and called for a “better support process for young people to explore all their options”. Abruptly stopping children’s treatment part-way through would be “inhumane”, it added.

The mother of a teenager who is part-way through puberty-blocking treatment at GIDS said she was “really anxious” and that the family was “in limbo”. “We’re just parents like anyone else who want the best for their child,” she said.

The 55-year-old from London, who asked not to be named, said her daughter had a year-long assessment at GIDs before beginning puberty blockers aged 14. She had expressed confusion about her gender and became “more and more unhappy” living as a boy. After beginning the treatment, she was “transformed”, her mother said.

Following the judgement, criminal barristers have been instructed to consider whether or not any criminal offences have been committed. It is being considered whether doctors were reckless as to the consequences, and reckless as to whether children were properly able to give informed consent. There is the possibility that this could lead to criminal proceedings.

Paul Conrathe, the claimants’ lawyer, said the judgement “opened the floodgates” for clinical negligence claims and placed the welfare of children as the “primary consideration”.

He added that it had “far reaching implications that extend beyond the Tavistock” and would be “relied upon around the world”.

Keira Bell, the claimant prescribed blockers at 16, said she was “delighted” by the judgement and that it would protect vulnerable children. She described her own treatment as a “devastating experiment”. “No one has apologised,” she added.