Hold NHSE to account for providing unsafe treatment for young people

by Anna Castle

Hold NHSE to account for providing unsafe treatment for young people

by Anna Castle
Anna Castle
Case Owner
Help us hold the NHS to account for providing unsafe treatment for young people with gender dysphoria
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Case Owner
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Latest: May 21, 2024

Withdrawal of case agreed, although this is not the end.

We have decided to withdraw our case in the light of changes made by the NHS since the last hearing on 26th March. In particular the NHS has decided to immediately pause new assessments in respect of…

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I Anna Castle and Ms C are planning to bring a judicial review against the NHS for providing unsafe treatment advice for young people from 17 years old and vulnerable adults. Hundreds of 17 year olds are referred to the adult service each year – more than any other age group.

We are two mothers whose stories are remarkably similar (although we have never met)

  • We are the mothers of teenage daughters (16 and 17 years old) who felt they were lesbians.
  • Our daughters are neurodiverse – autism and ADHD
  • Our daughters have both self-harmed
  • During lockdown our daughters accessed trans activist websites
  • During lockdown our daughters felt they were born in the wrong body and sought medical transition
  • We were shut out of the medical process as we had concerns about medical transition and our daughter’s vulnerabilities
  • Our daughters are on the waiting list for medical treatment
  • Our daughters no longer live with us but with their affirming fathers.

We want to protect our daughters from taking experimental medication that has lifelong irreversible consequences. They need therapeutic help and not powerful drugs. They need unbiased evidence based advice and not controversial gender ideology. We know our concerns echo those of many mothers round the country. If the Adult Service Specifications are changed this will offer much better protection and treatment to young people and vulnerable adults - not just our daughters. 

The Case

Increasingly in families across the UK young people are identifying as something other than their birth sex. This is often driven by unregulated groups promoting controversial gender ideology in schools. Young people struggling with their identity and relationships are easily drawn in to believing they were born in the wrong body through online chatrooms.

Young people are then affirmed in their beliefs by teachers, social workers and doctors. Some young people then seek medical help to transition with the use of powerful experimental unlicensed drugs. A significant number of these young people are vulnerable through poor mental health and neurodiverse disability such as autism and ADHD.

We had been very encouraged that the NHS had adopted a much safer practice for young people with gender dysphoria when it published the Interim Service Specification for Specialised Services for Children and Young People with Gender Dysphoria on 9th June 2023. This document and the Consultation Report and Equalities Impact Assessment that accompanied it required a much more cautious approach to treatment.

The significant uncertainties around hormonal treatment were acknowledged (with puberty blockers only being prescribed in a research protocol) and therapeutic intervention being the primary approach. This approach applies to young people up to the age of 18 years old.

BUT – the specification allows for young people to be referred to an adult clinic from 16 years old and treated there from 17 years old. This is justified as a helpful approach to reduce the waiting list. Adult Clinics however operate under a different service specification where the majority of people are referred for medical treatment after only 2 meetings. There is no acknowledgement of the serious concerns about hormonal treatment and psychological services are not required or routinely offered.

Psychological services that are offered have to be ‘gender affirming’ and conform to the controversial WPATH Guidance. Unlike the Children and Young People’s Service Specification there is a strong warning to psychologists not to engage in conversion therapy.

The new Children and Young People’s Service Specification creates the bizarre situation that if a young person is 17 years old they could be treated under it with a cautious therapeutic approach at one of the paediatric clinics OR if they are treated in an adult clinic could be on hormonal treatment after 2 meetings.

A patient’s co-morbidities do not magically disappear at age 17. Why should there be less protection for an adult with poor mental health and co-morbid disabilities ?

The Cass interim report recommendations adopted by NHS England were for the purpose of bringing the service into line with normal standards of paediatric care. The adult service has not similarly been reviewed to align with normal standards of adult healthcare.

We have been advised by our lawyers that the effect of the new service specification is not only bizarre for 17 year olds. It is unlawful because it discriminates against those who need the protection most – young people and vulnerable adults with neurodiverse disability and/or poor mental health.

Next Steps

We have sought advice from Jeremy Hyam KC and our solicitor, Paul Conrathe, will be writing next week to NHS England to threatening Judicial Review unless the Adult Service Specifications are withdrawn and updated in line with the NHS interim service specification for children and adolescents, to provide adequate safeguards for young people and vulnerable adults.

We Need Your Help

We need to send a pre-action letter threatening judicial review this week and then prepare to urgently launch proceedings in the High Court.

Update 5

Anna Castle

May 21, 2024

Withdrawal of case agreed, although this is not the end.

We have decided to withdraw our case in the light of changes made by the NHS since the last hearing on 26th March. In particular the NHS has decided to immediately pause new assessments in respect of 17 year olds at the adult clinics and expand the scope of its previous review of the Adult Service Specification to include the approach of the adult gender identity clinics.

The focus of our legal challenge was the discrepancy between the Children and Young People’s Service Specification and the Adult Service Specification in the way that 17 year olds were treated. The former required a thorough psychological assessment, access to puberty blockers only as part of a clinical trial and independent approval of cross sex hormone treatment. The latter, the Adult Service Specification did not require psychological assessment and hormones could be prescribed after only two appointments. Although this difference in approach was inexplicable and the NHS continued to argue that there was no real difference between the two specifications, in practical terms their decision to pause referral of 17 year olds has meant that age group now has much greater protection. The legal claim is therefore academic and the claim will therefore now be withdrawn.

We remain concerned about the treatment of young adults and vulnerable people over the age of 18 years old and note that the Dr Cass stated in her review that she would be writing to the NHS with her concerns. We will be following up on this with the NHS.

Thank you to everyone who has generously supported this case. not only has it offered greater protection to our daughters, but it has done so for the many 17 year olds who could have been provided with very concerning treatment at the adult clinics.

The NHS are asking we pay their legal fees of c.£18,000. We will be disputing this. We also have our legal fees to cover. 

Please consider making a further donation and sharing this crowdfunder.

Thank you for your support.

Update 4

Anna Castle

March 27, 2024

Yesterday's Hearing

Yesterday our case came before the High Court. The most senior judge in the High Court for this type of case, Mr Justice Swift, heard the case. We were asking for permission to challenge the adult service specification which allows 17 year olds to receive life changing hormonal treatment after only two appointments and without a psychological evaluation. This particularly exposes young women and those with neurodiverse conditions to a significant risk of lifelong harm.

Remarkably the NHS argued that the Adult service specification is very similar to the new Children and Adolescent’s one issued on June 2003. The latter requires extensive psychological input before treatment can begin. Even if hormonal treatment is recommended under that specification it has to be approved by an independent panel. There is simply no comparison. This is shameful and disingenuous on the part of the NHS.

The NHS also sought to argue procedural objections, but the judge would have none of it.

The judge was particularly concerned with the impending final report of the Cass Review. He decided to adjourn the hearing to 23rd May to see what Dr Cass has recommended for the older cohort of patients and how the NHS responds to this. This is very good news as a High Court judge will be scrutinising the protection offered by the NHS to older teenagers with gender dysphoria.

We have incurred very significant legal costs in bringing this case. It is for the benefit of all older teenagers and young adults with gender dysphoria. It will also highlight the importance of the Cass Review for these young people. We still have a way to go and we need your help to hold the NHS to account. Please donate to this case and share this crowdfunder. Thankyou for your support.

Update 3

Anna Castle

March 5, 2024

Case listed for 26th March 2024 at the High Court

We have now heard that our case has been listed for hearing in the High Court in London on Tuesday 26th March 2024. 

At this hearing, a judge will decide whether it is arguable that our case shows the NHS have acted unlawfully in not amending the adult service specifications. It is those specifications that do not require psychological evaluation and intervention prior to treatment. They are a fast tracked to irreversible lifelong harm with a ‘treatment’ that does not have the evidence to justify its safety or effectiveness. 

The Service Specification we are challenging endorses WPATH Guidelines as good practice. Yet today ( 5th March 2024) files have been released that show deeply concerning practice within WPATH. 

The Daily Mail (www.dailymail.co.uk/news/article-13156695/amp/Trans-healthcare-doctors-exposed-admitting-patients-young-mentally-ill-understand-consequences-treatment.html ) reports :  Leaked messages from the World Professional Association for Transgender Health (WPATH) reveal how medics acknowledged behind the scenes that teenagers given puberty-blocking drugs did not always realise they could never have children…and… Some members of the US group, whose guidelines have influenced the NHS in England and the Scottish government, say they have gone ahead with surgery for people with severe mental health problems despite fears about whether they could give fully informed consent...  

The Department of Health state NHS England ‘moved away from WPATH guidelines more than five years ago’. THIS IS PLAINLY FALSE. THE NHS IS DEFENDING THE GUIDELINES IN OUR CASE. 

It's from age 17 - in the adult service - that most irreversible damage is done. It's the adult service that removes healthy organs, makes you bald and infertile, and does this on the recommendation of only two meetings. 

This hormonal treatment and surgery is given to vulnerable young people. In one of the few studies in this area, of the women under 25 who were treated at the Exeter adult gender clinic, 89.4% had an adverse childhood experience, and 23.4% had a neurodevelopment disorder. 72.4% of the clinic’s users were found to have a previously diagnosed mental health condition. And yet – psychological intervention is not a required pre-requisite to access medical treatment. 

Two-thirds of patients in adult clinics are 25 or under. 17 year olds are the largest single group referred to adult clinics. And the NHS's recent changes to the adolescent referral system will direct even more teenagers to these adult clinics. 

The NHS have turned a blind eye to the welfare of these vulnerable teenagers. This stands in stark contrast to those who are due to be treated under the new Children and Adolescent Service Specification. Under 18s have had a years-long independent review, legal and political attention, but the adult service is still wholly unreformed, pulling in the opposite direction to Cass. Under 18s had two NICE reviews. But adults' medical interventions have never had even one. This is a major injustice to young people who are still growing up, and being subjected to interventions unsupported by good evidence, and with no tracking of long-term outcomes. 

The NHS have instructed a Kings Counsel barrister to represent them and sadly are fighting this case. We need your help so that the current harmful adult service specification can be withdrawn and safe and effective clinical practice can be put in place for this vulnerable group of teenagers. Please would you continue to support this case financially and share it with others who are similarly concerned.

Update 2

Anna Castle

Dec. 27, 2023

Appealing for permission to proceed to full trial

We have now heard from the Court that we have been denied permission to proceed to a full trial. 

The judge considered the adult service specification and the children and young people’s one and concluded that “Both specifications are aimed at securing personalised and specialised assessments that address all aspects of the patient’s history and presentation, and are conducted by experienced clinicians.“ 

This is both disappointing and surprising. It is also incorrect as psychological support is not mandated. Dr Karl Neff, clinical lead for the gender service in Ireland had assessed the adult service specifications and noted -

“The NHS provides a prescriptive, holistic, and cautious clinical approach to the management of gender dysphoria in children and adolescents. This is informed by the recommendations of the Cass Review, which acknowledges the complexity of the referrals received by gender services, and the poor evidence base for medical as indicated by systematic review. Within the Cass Review it is clear that consideration has been given the to the wide-ranging lifelong consequences associated with medical transition.

This considered approach contrasts strongly with the adult service specifications which appear to assume that most referrals to adult gender services do not involve clinical complexity. By doing so the Service Specification puts those with complex presentations at an unreasonable risk of harm.”

Dr Neff concluded- 

“My opinion is that the current NHS Service Specifications 1719 and 1780 do not provide an adequate degree of protection and are likely to have a disproportionately adverse effect on those who suffer from co-existing mental health conditions or those who have additional clinical needs (e.g.autism). Permitting co-existing clinical needs to be left unaddressed could result in serious harm with lifelong consequences for this cohort.”

We believe that a significant majority of young people are exposed to an unacceptable risk of harm as a result of the service specifications that are outdated and potentially dangerous. We are therefore appealing the judge’s decision. 

We will be appealing to the Court for permission to proceed to a full trial. This appeal will take place in the High Court in London. We expect it will happen in a few months time. We will update you when we know of the date.

We are grateful to those who have supported us thusfar and ask that you would share this crowdfunder and give generously so that we can press on with our legal claim. 

Thank you for your support.

Update 1

Anna Castle

Nov. 3, 2023

NHS England resists our case

We have now had a reply from the NHS to our legal claim. 

They strongly resist our case. It is a surprising and disappointing response. 

In particular they argue that as parents we do not have sufficient standing to bring the case. This is legal language that means we have no right to be heard by a court as the issue does not affect us. 

The NHS states “parents lack a legitimate interest in the proceedings". 

We think this is outrageous. We are parents with parental responsibility who are concerned about the welfare of our daughters who are at risk of receiving a highly controversial medical treatment which the NHS itself acknowledges has insufficient evidence for its safety and effectiveness.

The NHS also argues that although our 17 year old daughters can be treated under two different service specifications (one for children and young people and one for adults) the specifications are really the same. 

This is simply not true. It is not true in the specifications themselves – one requiring a psychological approach as the first line of treatment and one saying that a psychological approach will not be offered routinely or considered mandatory (the adult one). 

It is also not true in practice. In April this year GIDS wrote to 16 year olds to advise them to seek treatment from adult clinics. In that letter they stated :

“Factors that influence people’s decisions include –

-Services Offered (e.g not all clinics offer things like speech therapy or psychological support).”

We are very disappointed with the response of the NHS. 

Instead of accepting what their own evidence already has told them about the risks of this controversial treatment, they have patronised concerned parents with untruths and false assurances.

Our case is not just for us. It is for the many gender questioning young people seeking help and their parents who want to make sure their children’s lives are not irreparably damaged.

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