The National Children and Young People’s Gender Dysphoria Research Oversight Board

A quick look into who they are and what they're up to. Please feel free to subsribe if you think my content is worth following. (It's free for now!)

This article is merely intended to draw out a few facts about this Board that I believe people should be aware of. I have not done a deep dive into its members or inner workings yet, so please bear that in mind.

I only today became aware of the existence of this panel, which says a lot about how much they stay under the radar.

From the NHS page about this body we learn the following:
“This national oversight board has been established to ensure research is embedded at the heart of new children and young people’s gender dysphoria services as they are shaped and developed”.

Which can loosely be interpreted as: They’ll basically be guinea pigs for research.

Key drivers of the oversight board are:

-          Investment in research capacity

-          Living systematic evidence review

-          A priority setting partnership – which involves the James Lind Alliance

-          A planned puberty supressing hormone study (pending ethical approval)

-          Learning through information

-          A data linkage study

Generally speaking, it doesn’t sound too bad. However, I do have some immediate concerns: The chief investigator for the puberty blocker study is Prof. Emily Simonoff. According to ResearchGate are stated as “My research interests focus on neurodevelopmental disorders, especially autism, ADHD and intellectual disability”. Most noticeably, according to her own profile, she has ZERO experience with gender dysphoria. Her skills and experience are listed as: Autism, Intellectual Disabilities, Autism Spectrum Disorders, ADHD, Psychopathology, Clinical Psychiatry, Psychiatry and Psychopharmacology.

Rather concerning about her is the following quote, taken from an article in the Guardian which raised concern about the high proportion of children in England that have been put on antipsychotics. “Emily Simonoff, professor of child and adolescent psychiatry at the Institute of Psychiatry Psychology & Neuroscience, King’s College London, who was not involved in the study, said there was emerging evidence of the benefits of this kind of medication for a range of different conditions”.  Sounds like someone who for my taste is a bit too keen to medicalise.

Not off to a great start.

Now then, from here on in, things get worse.

Membership of the Research Oversight Board

Look at for what’s at the bottom of the list. In amongst those that are still to be confirmed, is indeed Dr. Hilary Cass.

·       Chair – Professor Sir Simon Wessely (Non-Executive Director, NHS England)

·       Beth Scott, , Deputy Director (Research Programmes), Department of Health and Social Care (DHSC)

·       Professor Patrick Chinnery, Medical Research Council (MRC)

·       Professor Steve Turner, President of the Royal College of Paediatrics and Child Health (RCPCH)

·       Professor Peter Fonagy, National Clinical Advisor, Children’s Mental Health, NHS England

·       Professor Indi Banerjee and Dr Rachel Elvins; Royal Manchester Children’s Hospital

·       Dr Lindsay Neil, Alder Hey Children’s NHS Foundation Trust

·       Dr Helen Griffiths, Great Ormond Street Hospital for Children NHS Foundation Trust

·       Dr Troy Tranah, South London and Maudsley NHS Foundation Trust

·       Dr Bidisha Lahoti, Guy’s and St Thomas’ NHS Foundation Trust

·       Dr Julie Alderson, University Hospitals Bristol NHS Foundation Trust 

·       To be confirmed, Clinical leadership representation from Learning Disabilities and Autism, NHS England

·       Professor John Chester, Director of Research and Innovation, Alder Hey Children’s NHS Foundation Trust

·       Professor Thomas Voit, Director of the NIHR Great Ormond Street Hospital for Children NHS Foundation Trust (GOSH) Biomedical Research Centre and Professor of Paediatrics at GOSH

·       Professor Grainne McAlonan, Professor of Translational Neuroscience and Interim Director, NIHR-Maudsley Biomedical Research Centre (BRC)

·       Professor Stuart Logan, Director of South West Peninsula Applied Research Collaboration (PenARC)

·       Professor James Palmer, National Medical Director (Specialised Services), NHS England

·       Jeremy Glyde, Deputy Director CYP Gender Dysphoria Programme, NHS England

·       Ann Jarvis, Programme Director (Clinical Strategy), NHS England

·       To be confirmed), Data sub-group chair information officer

·       Dr Hilary Cass, National Specialty Advisor (Gender) and Research sub-group chair

·       To be confirmed, Quality improvement sub-group chair

·       To be confirmed, Representation from individuals with lived experience

·       Representation from parents of people with lived experience (1)

There are a few spots still to be confirmed. Out of those, it is the Data sub-group chair information officer which worries me the most. Why? Because the role would fit in perfectly with the last research assignment that was performed by Prof, Alice Sullivan. I can’t be sure, but I can’t exclude it either. If she were to be appointed, it would mean big trouble given her connection with Sex Matters. But let’s try to stay positive and hope they don’t go down that path.

And I know I should be glad that at least 1 person with lived experience sits on the panel, but quite frankly that is window-dressing. In amongst these clinicians, they won’t stand a chance at being heard.

The decision making part of this body: I’ve only highlighted Cass, but also Michael Absoud and Julie Alderson are worth mentioning, given that both spoke at the SEGM conference, as mentioned by the Lemkin Institute for Genocide Prevention.

And that brings me to the disturbing aspect of these minutes:
Allow me to summarise the key messages from the two screenshots below:

Agenda item 3: Matters Arising
Dr Hilary Cass is now in charge

Agenda item 4:  Publication of the CASS Review
She did what she always does when criticism is raised: She denies it but has no argument to support her claims. She does this consistently by not actually replying to the criticism itself. Rather she deflects by stating that her methodology was transparent throughout. Transparent is not a synonym for robust nor acceptable. Unfortunately, her bullying tactics work, because nobody dared to challenge, which says a bit about how the forum operates in terms of the power dynamic. Again, it’s not good news.

The real worrying remark here related to Gender Affirming Hormones: defining the outcomes for patients who are NOT put on a medical pathway. That really reads like an intentional strategy is being put in place. And patients would be required to remain in long-term follow up for the sole purpose of providing data for their research. There wasn’t a hint of actual patient care at the basis of that argument. Even more, Cass wants to use it as a building block for a national database. That may seem innocuous, but given their background, I have no doubt that it is data which will serve to prevent patients from receiving gender affirming care.

Agenda item 5: Update on the progress of the Data Linkage Project:
2 Key takeaways here are: Firstly, the consideration for enforcing action to get access to the patient data from the Gender Clinics. That’s a bold move, which I find ethically questionable. It’s also not entirely clear what they hope to achieve by accessing those records. There is no immediate reason given for the need to have that data. Secondly, it is an action which includes the data for adults. That dataset is not in scope of this research group, it’s well outside of their research parameters.

Agenda item 6: Establishing a Core Clinical Data Set:
It simply clarifies that their approach towards all patients in all the Gender Clinics is to automatically opt-in for data collection. And it sounds like a one-way street, since only opt-in is mentioned, and no consideration is provided for cases where the patient decides to opt-out. That obviously has to be confirmed when it is put to practice, but it is worth noting that this could well be another strategic choice.

And from the meeting minutes of 8 July:

1. More of a question: If anyone can figure out who the expert is that Emily is consulting with, that’d be great!

2. Dr Michael Absoud is now in charge of PSP, so the SEGM supporters are having complete control of the Oversight Board.

Which brings me to this little sentence, which I lifted from the letter from Wes Streeting to the Lords. As if to underline how we’re being viewed, it had this quote from Prof. Appleby in it:

I’ll leave it at that for now.
I know it looks a bit grim, but to end perhaps on a positive: It appears at least that the new services are about to be rolled out.

Take care,

Emilia Beckers