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February 25th 2021

Medical Negligence

Will landmark court ruling result in compensation for adults given puberty blockers as children having regretted it in later life?

Will landmark court ruling result in compensation for adults given puberty blockers as children having regretted it in later life?

A High Court ruling that children under the age of 16 who suffer from gender dysphoria are unable to fully grasp the life-changing impact of treatment with puberty blockers could have opened the door to legal claims from adults, writes Solicitor Sharon Lam.

A High Court ruling that children under the age of 16 who suffer from gender dysphoria are unable to fully grasp the life-changing impact of treatment with puberty blockers could have opened the door to legal claims from adults, writes Solicitor Sharon Lam.

It follows a case around the treatment of Keira Bell, who at the age of 15 made the decision to transition from female to male.

She began treatment with puberty blockers under the care of the Gender Identity Development Service (GIDS), part of the Tavistock and Portman NHS Foundation Trust.

Keira went on to start cross sex hormone treatment at 17 and underwent a mastectomy at age 20. Now aged 23, Bell has told how it is a decision now regretted, and is currently in the process of transitioning back to a woman.

Her claim against Tavistock NHS Trust was supported by an unnamed mother of a 15 year old autistic child who is on the waiting list for similar treatment.

As part of the review, Ms Bell claimed her decision should have been challenged more by doctors, and that she was not at the time old enough to make such a huge life decision.

At Hudgell Solicitors, we are proud to support clients who have faced the difficulties of feeling that their gender identity differs from their sex assigned at birth.

In many cases, they feel treatment and surgery is the only way people are able to become who they truly are, helping them towards new, happier and more fulfilling lives.

Yet, as this case has highlighted, and has been ruled by a court, such life-changing decisions are not appropriate for a child to make, even with parental support.

That ruling could now lead to legal action being pursued by individuals whose lives have been damaged by beginning treatment on puberty blockers as children, and then regretting it in adult life having gone on to undergo cross-sex hormone treatment and surgery.

Questions over long term influence of ‘puberty blockers’ and ‘informed consent’ was key in case

There are essentially three stages for gender transition treatment, which are;

  • Stage 1 – The administration of puberty blockers, which, prior to this case, could be prescribed to children as young as 10. This works by blocking the hormones that lead to puberty. It was claimed it helps to improve mental well-being and reduce depression and anxiety, but that claim was not evidence based. The research on the long term effects on brain and physical development is limited and to a large extent, unknown.
  • Stage 2 – The administration of cross-sex hormones (CSH), which, prior to this case could only be prescribed from around age 16 or above.
  • Stage 3 – Gender reassignment surgery, which is currently only available via adult services to those over 18.

The key elements of this landmark legal case related to children’s ability to give consent to begin treatment with puberty blockers – and whether such treatment simply afforded them time to consider their decision, or set them on a more firm path towards a change of sex and surgery.

By law, children under 16 are able to consent to their own treatment if they’re believed to have enough intelligence, competence and understanding to fully appreciate what’s involved in their treatment, something which is known as being ‘Gillick competent.’

Otherwise, someone with parental responsibility can consent for them, or the court’s authorisation is required.

In this case of Ms Bell, the defendants argued that all their patients aged 16 and under who have received puberty blockers had been carefully assessed as being ‘Gillick competent’, and therefore able to make such a decision.

The High Court, however, disagreed.

It said children would need an understanding in respect of all three stages of gender transition treatment and that the relevant information a child would have to understand, retain and weigh up in order to provide valid consent would not be possible for a child under 16.

Even if they could understand on paper, it concluded that it would be difficult for them to understand the full impact of such treatment on fertility and loss of sexual function upon their adult life.

The court effectively said puberty blockers act as the first stage in a likely progressive treatment pathway. Therefore, information has to be provided and fully understood in respect of all three stages I have outlined above.

Evidence was also shared which showed that children who were treated with puberty blockers nearly always ended up moving on to receive the next stage treatment, which is irreversible cross-sex hormones. Some studies show that only about 1.9% of children stopped the treatment after the first stage and did not proceed to cross-sex hormones.

This places a huge question mark over claims that the purpose of puberty blockers is merely to give children time to think, and rather acts to precondition children into being more swayed towards irreversible surgery when they reach the required age.

Interestingly, in expert evidence heard in the case of Ms Bell, Professor Christopher Gillberg, a global expert on autism, claimed girls who are autistic or anorexic appear more likely to say they want to become boys. He claimed that research showed that, if left alone, those girls usually accepted that they wanted to live as women when they were older.

It was also suggested in one paper published last year that autism spectrum disorders had “a prevalence of 6%-26% in transgender populations, higher than the general population”.

Professor Gillberg said doctors should tell families that when using puberty blockers, they were ‘dealing with a live experiment on adolescents and children’.

Doctors must now have permission of the courts to start children on puberty blockers

The High Court ruled it is highly unlikely that a child aged 13 or under would ever be competent to give consent to being treated with puberty blockers, and doubtful that children aged 14 and 15 could understand the long-term risks and consequences of treatment.

And, despite a presumption under the Family Law Reform Act 1969 that those aged 16 had the capacity to consent to surgical and medical treatment, it was ruled that clinicians might consider obtaining court authorisation prior to commencing the clinical treatment, if only to protect themselves from future claims on the ground of lack of consent.

Following the ruling, NHS England updated the specifications for gender reassignment to say that nobody under the age of 16 will now be able to be referred onto the puberty blocker pathway unless a court rules that it is in a child’s best interests.

When making such order, the court must be satisfied that the proposed treatment is both in the child’s best interests and necessary.

It is clear that, until new clinical guidelines are available, if any young person under 18 is to be prescribed with puberty blockers, their case should be decided by court under their inherent jurisdiction.

Any such treatment, moreover, is unlikely to be given to those under 16.

Ruling impacts on people currently undergoing treatment and those who have completed

The decision has wide implication for clinical practice prescribing puberty blockers to people under the age of 18 for gender dysphoria.

It has been reported that the NHS service at Tavistock had a surge in demand from 77 in 2009 to 2,590 in 2018-19, with more than 4,600 young people on a waiting list.

For patients already under medications, clinicians should now review such treatment and either withdraw it within a clinically appropriate timeframe or to make a “best interests” application to the court for final determination of the child’s interest.

Any failure to do so would be potentially in breach of their duty of care. It is my view that similar considerations should also apply to children aged 16 and 17.

The ruling also potentially has retrospective implications in that the court decided that no child is capable of giving consent to puberty blockers treatment, and therefore those who already received such treatment when they were under 18 did so without their consent.

Therefore, if they subsequently regretted receiving such treatment, they may be able to claim damages for all loss and injury caused.

The nature of losses and injury could be many folds. At the outset, the injury could be the known side effect including weight gain, hot flashes, headaches and bone density and affected growth.

Psychiatric injury, loss of fertility and sexual function and the cost of future medical treatment including reversal or remedial surgery could also be included.

In addition, the long-term consequences of puberty blockers are currently unknown. It would therefore be prudent for any potential claimants to obtain medical evidence from an expert in endocrinology specialising in puberty blockers to explore the potential long term effect.

It is also not clear whether, for patients like Ms Bell, who, after reaching 18, went on to receive cross-sex hormones with lifelong irreversible consequences and gender reassignment surgeries, could make a claim if they subsequently regretted such surgeries.

Whether it can be argued that puberty blocker medications preconditioned them to receive the more drastic stage of the treatment later on and therefore even the later consents are skewed or tainted or defective remains to be seen.

How will previous ‘consent’ of children be judged in courts of law?

It is a general legal principle that valid consent must be obtained before starting treatment.

This principle reflects the right of patients to determine what happens to their own bodies. The failure to obtain consent, resulting in harm, may form the basis of a clinical negligence claim against healthcare professionals involved, even if there is no negligence in the treatment itself.

But what does a valid consent entail? The court in the case of Montgomery principle rules that a doctor is under a duty to take reasonable care to ensure that the patient is aware of any material risks involved in any recommended treatment, and of any reasonable alternative or variant treatments.

Using this principle, Claimant counsel argued that in determining whether a child is Gillick competent the court should refer to Montgomery principle and consider what would a “reasonable person in the patient’s position understand”, and in asking that question, that a “reasonable person” be someone with adult knowledge.

However, defence counsel argued the opposite way, and that the correct approach in deciding what information was material would be to assume a reasonable child of the individual’s age.

In some ways, I agree with defence counsel that Montgomery decision offers very limited assistance, as it doesn’t question the patient’s capacity. Using Gillick competency, the very issue to be decided is whether a child is competent to make the decision in the first place.

Also, in the Gillick competency scenario, one cannot assume children have understanding of treatment like that of an adult, precisely because they are not adults. For children between 16 and17, there is presumption of capacity to consent and so Montgomery principle would still be applicable.

Decision to be reviewed again by Court of Appeal

It was recently revealed that the Court of Appeal has granted permission to Tavistock and Portman NHS Foundation Trust to appeal the decision of last December in the Bell case, meaning the matter will again come before the courts.

Whatever the outcome of that appeal, this case has raised issues about how much information is sufficient and whether patients truly understand the nature of the risks and benefits of any proposed treatment.

Both children who suffer from gender dysphoria, and the clinicians who treat them, deserve protection through greater clarity and understanding.

Supporting people when gender reassignment surgery goes wrong

At Hudgells Solicitors we also represent adult patients whose gender reassignment surgeries went horribly wrong.

Currently there is only one clinic and a small number of surgeons carrying out these surgeries who effectively set their own standards, as although the treatment is still carried out under blanket indemnity of NHS, the surgery is effectively outsourced to a single independent provider clinic.

Regulatory framework is obscure, standards can vary and outcomes can be unpredictable.

Many who have been through these surgeries have been left feeling bitterly disappointed that they were promised a lot but were ultimately left feeling abandoned when things went wrong.

Funding can dry up and they be left unable to access more complex remedial surgeries or “re-do” procedures that often have to take place abroad, due to the treatment being more “advanced” in the US, Netherlands or Germany.

More resources are needed so all surgeons are trained properly and funding made available when patients have to be referred overseas to continue their treatment.

Patients deserve better, with more time spent and honest discussions about what can realistically be achieved, and where they can get other expert help or second opinions when things go wrong are essential.

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