LEGAL CASE TO PROTECT CHILDREN FROM EXPERIMENTAL MEDICAL TREATMENT

by Susan Evans

LEGAL CASE TO PROTECT CHILDREN FROM EXPERIMENTAL MEDICAL TREATMENT

by Susan Evans
Susan Evans
Case Owner
LEGAL CASE TO PROTECT CHILDREN FROM HARMFUL EXPERIMENTAL MEDICAL TREATMENT
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LEGAL CASE TO PROTECT CHILDREN FROM HARMFUL EXPERIMENTAL MEDICAL TREATMENT
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Latest: Nov. 8, 2019

Next steps - looking at the evidence

Hello to anyone who is here for the first look, and welcome back to previous visitors.

Firstly, I need to say a huge thank you to everyone who has supported this case so far. (I am sorry I have not ...

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My Story: 

I am Susan Evans, I trained as a state registered nurse and psychiatric nurse and have worked in many areas of mental health since the 1980’s. I have also trained as a Psychoanalytic Psychotherapist and currently work in private practice. I was a Senior Clinical Lecturer at the Tavistock and Portman NHSFT and Senior Fellow in Education, University of East London. 

During my employment at the Tavistock and Portman I spent a period of years working in the Gender Identity Development clinic for children.

While working there I quickly became concerned about the treatment approach. When I joined the team I had expected that the young people would be assessed in depth and given support and psychological treatment over several years. The alarm bells began ringing for me when a colleague at the weekly team clinical meeting said that they had seen a young person 4 times and they were now recommending them for a referral to the endocrinology department to commence hormone therapy. 

It became apparent that there was tremendous pressure on the GIDS staff coming from several directions - the distressed patients, sometimes the families, but most worryingly from the ‘support’ groups and charities, who seemed to be having undue influence on the treatment approach within the GIDS. Senior staff from GIDS have also been on the ‘teams’ at certain charities such as Mermaids and Gendered Intelligence. 

I tried to raise my concerns as I questioned the rapidity of the referrals of the young people to the Endocrine clinic.

I also clinically disagreed with the request to fall into line in immediately ‘affirming’ the children's beliefs and also the expectation to write to other professionals using the name and sex the child had chosen rather than the patient who had been referred. (This was in place of following the usual professional clinical stance of holding an open mind and trying to explore and understand with the child all the difficulties they were experiencing, whilst supporting them and their families in their distress and liaising with the referrer and other appropriate professionals). 

There was also the overhanging threat mentioned of being sued by a client if staff did comply. As time went on I felt alienated by certain staff within the clinical team, so I took my concerns ('whistle blew') to the Tavistock Clinical Management. There was an internal inquiry in 2004, but despite certain recommendations, nothing really changed and I eventually felt that for my own mental health, I could no longer work in GIDS, but I left worrying about the children and their families. I have now met several people who share our serious concerns about the experimental medicalisation of young people with gender dysphoria.

MRS A

I am the mother of a 15 year old daughter, who is going through a time of gender confusion. She has autism and other mental health issues and I am trying to help her through this distressing experience. With a lack of specialist expertise within our regional Child and Adolescent Mental Health Service, I have agreed for her to join the GIDS waiting list, but with significant reservations.

I have deep concerns that the current clinical approach at GIDS means that my daughter will be subjected to an experimental treatment path that is not adequately regulated, where there are insufficient safeguards, where her autism will not be properly accounted for and where no-one (let alone my daughter) understands the risks and therefore cannot ensure informed consent is obtained.

I am remaining anonymous as I do not wish to expose my vulnerable daughter to the spotlight of media attention over what is a very sensitive issue, both within our family and in the wider community. There are many parents, like me, who are anxiously trying to support their children through an already turbulent adolescence, with the additional distress of issues surrounding identity development. We want the best for our children, but we need this to be from a position of evidence based, not experimental, medicine. Please support me in this case to prevent further harm being caused from this unproven, experimental treatment.

A momentous step in the dark

There have been numerous concerns expressed repeatedly in the media and from reputable professional bodies. Professor Heneghan from the Oxford Centre for Evidence Based Medicine concluded in a post in the British Medical Journal dated 25/2/19 : “An Archive of Diseases in Childhood letter referred to GnRHa treatment as a momentous step in the dark. It set out three main concerns: 1) young people are left in a state of ‘developmental limbo’ without secondary sexual characteristics that might consolidate gender identity; 2) use is likely to threaten the maturation of the adolescent mind, and 3) puberty blockers are being used in the context of profound scientific ignorance.”

The current evidence base does not support informed decision making and safe practice in children. “ Many professionals are now highly concerned about the treatments for under 18 gender dysphoric children and adolescents which remain largely experimental. There are so many unanswered questions that include the age at start, reversibility; serious adverse health events, long term effects on mental health, neurological effects on cognitive functioning, the effect on bone density, circulatory systems and sexual functioning in adulthood. We cannot stand by and watch young people be part of an experimental medical treatment that exposes them to very significant risks. We should be providing thoughtful, expert, longer term psychological help and therapy, which research has shown to be helpful for many of these children.

We need your help

We need your support to bring this test case that will ask the courts to establish that children cannot give their informed consent to radical experimental medical treatment. The harm they might suffer could have lifelong consequences. We have brought together an expert legal team and we have now written to the Tavistock and Portman NHS Foundation Trust and NHS England to ask them to stop this experimental and potentially harmful treatment. We ask you to give whatever you can to help us bring this test case.


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Update 1

Susan Evans

Nov. 8, 2019

Next steps - looking at the evidence

Hello to anyone who is here for the first look, and welcome back to previous visitors.

Firstly, I need to say a huge thank you to everyone who has supported this case so far. (I am sorry I have not updated on it sooner, but my mum passed away on 18th October). It has been hugely encouraging to see all your messages of support – I have read every one of them and it made me feel sure we are doing a good thing in challenging the current medical practice at GIDS, Tavistock. It is essential that young people who are experiencing gender dysphoria are given much more thorough assessments, which would allow for in depth psychological exploration and understanding of each child’s particular treatment needs

So I can tell what has happened to date.
Our lawyer wrote a formal letter to NHS England and GIDS Tavistock, on 11/10/19 requesting that they should cease prescribing hormone blockers to children under the age of 18 years.

One point of clarification: We are not seeking compensation in this case. We are seeking a Judicial Review in an attempt to get a ruling from the court that the current practice at The Tavistock is unlawful.
So to be clear, we have nothing to gain financially from this case whatsoever. The fund which you are so brilliantly helping us with, is to cover legal costs. I will only have a clear conscience to gain I promise you! We are hoping to get my costs capped but at the moment we are trying to raise £50,000 minimum, so do please keep sharing the link and keep the donations coming in. Perhaps send it with a message of how the current ‘affirmative approach’ is affecting so many families throughout the world? Our huge ‘gain’ in the future will hopefully be to avoid the medicalisation of the next generation of young people with gender dysphoria.

Once the letter had gone to NHS England and GIDS Tavistock, we gave them until 1st November to respond. GIDS have replied and suggested a meeting to discuss the case, which we are currently considering. They have not agreed to stop referring people to the Endocrinology clinic for medication. Mum A, our solicitor and I are going to discuss our ‘next steps’ this week and I will let you know as soon as we have further developments on the judicial review, hopefully by the beginning of December.

I know that many of you have donated because this cause is very close to your hearts and minds, and every time I feel a bit overwhelmed with things, I remind myself of what I have learned from many of you who have shared your situations with me – patients, parents, professionals. We are doing our very best to try to make the future better for all children and their families when the distress of ‘gender dysphoria’ comes into their life.

Once again, on behalf of Mum A and me – Thank you very much.

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