A retrospective review of Professor Appleby’s report about suicides of youth with gender dysphoria
When research is used as a weapon, we should all fear the outcome.
A retrospective review of Professor Appleby’s report about suicides of youth with gender dysphoria
What has been clear for some time now, is that the NHS has a problem with transgender healthcare. Objectivity has been replaced with prejudice and at every turn, decisions are made whereby the views of patients with gender dysphoria are ignored or worse yet, replaced with an exclusive view of those who believe they can “cure” patients with conversion therapy, disguised as “talking therapy”.
That has never been more apparent than when The Good Law Project released a statement about the increase in suicide rates for transgender youths in the period since 2020, a fact which has been covered by the NHS.
The NHS were quick to respond with supposedly independent review by Professor Louis Appleby. And this is where the problem really starts. Prof. Appleby used the statistics from the National Child Mortality Database (NCMD), who first launched the NCMD database back in 2018. The NCMD Chaired is Director Dr. Karen Luyt who is supported by two Deputy Directors, namely Vicky Sleap and Sylvia Stoianova.
On the face of things, the NCMD are responsible for advancing the information about child mortality. Except, in all aspects of its functioning, there is not a single representation, professional or otherwise, for youths with gender dysphoria.
The Terms of Reference for the governance of the NCMD lists three essential bodies:
- Parent, Patient and Public Involvement Stakeholder Advisory Group
- Steering Group
- Professional Advisory Group
The Parent, Patient and Public Involvement Stakeholder Advisory Group is split into partner charities, third sector stakeholders and families and patients.
The three partner charities are Lullaby Trust, Sands and Child Bereavement UK.
Together with the chosen third sector stakeholders there are no less than 31 different charities and trusts which are a part of the advisory group. Out of these 31 groups, not even one represents patients with gender dysphoria.
Then there’s the Steering Group, a body of 18 medical professionals which sets the direction of evolution for the NCMD. On it, among the director and two deputy directors are the following people:
Tom Williams NCMD Data Manager
James Harle NCMD Senior Communications and Engagement Officer
Ghazala Jones NCMD Administrator
Prof Peter Blair Professor of Epidemiology and Statistics, University of Bristol
Dr David Odd NCMD Lead Epidemiologist
Dr Joanna Garstang NCMD Clinical Advisor, Chair of Association of CDR Professionals
Dr James Fraser NCMD Clinical Advisor, Chair of NCMD Professional Advisory Group
Prof Peter Fonagy Director of Mental Health Programmes, UCL Partners
Ann Chalmers Chief Executive, Child Bereavement UK
Julie Hartley Prevention and Practice Improvement Officer, Sands
Jenny Ward Chief Executive, The Lullaby Trust
Charlotte McClymont Children and Young People Programme Manager,
UCL Partners
Abi Miranda Head of Early Years and Prevention, Anna Freud
Rob Taylor Managing Director, QES
Caroline Rogers Associate Director, HQIP
Natalia Plejic Project Manager, HQIP
Again, no representation from anyone within the NHS dealing with gender dysphoria patients.
Finally, there is the Professional Advisory Group, which is chaired by Dr James Fraser. This is by far the largest group of advisors. And again, not a single representative on this body for people with gender dysphoria. The ones highlighted in bold are Key Clinical groups representing the major causes and places of death.
Association for Child & Adolescent Mental Health, Barbara Maughan
Association of Child Death Review Professionals (ACDRP), Nicola Needham
Association of Paediatric Palliative Medicine (APPM), Emily Harrop and Anna-Karenia Anderson
British Association for Community Child Health, Pending confirmation of representative
Royal College of Emergency Medicine, Sian Thomas
British Association of Paediatric Surgeons, Pending confirmation of representative
British Association of Perinatal Medicine, Stephen Wardle
British Association of Social Workers, Luke Geoghegan
Children and Young People’s Cancer Clinical Reference Group, Rachael Hough
Children’s Cancer & Leukaemia Group, Jesicca Bate
Children and Young People's Cancer Clinical Reference Group, Julia Chisholm
Children's Commissioner for England, Harriet Waldegrave
College of Paramedics, Will Broughton
Coroners’ Society of England and Wales, Victoria Davies
National Director, Children and Young People’s Mental Health Services (CYPMHS) Clinical Reference Group (CRG), Prathiba Chitsabesan
Children and Young People’s Mental Health Services (CYPMHS) Clinical Reference Group (CRG), Tina Irani
Department for Education, Melanie Cawthorn
English Ambulance Services via Association of Ambulance Chief Executives (AACE), Nicola Albutt and Lucy Gascoigne
Institute of Criminal Justice Studies, University of Portsmouth, John Fox
Institute of Health Visiting, Philippa Bishop
UK Preterm Clinical Network and NIHR Research Delivery Network (Reproductive Health and Childbirth national specialty group), Nigel Simpson
National Association of Head Teachers, Pending confirmation of representative
National Genetic Risk Expert Group, Nasaim Khan
National Medical Examiner for England and Wales, Alan Fletcher Pending confirmation
National Network of Designated Healthcare Professionals, Peter Green
National Police Chiefs Council, Eamonn Bridger
NHS England, Kay Pope
Office of the Chief Coroner, Cathy Yallop
Office for Health Improvement and Disparities, Helen Duncan and Marilena Korkodilos
Office for National Statistics, Pending confirmation of representative
Paediatric Critical Care Society, Miriam Fine Goulden
PICANet, Richard Feltbower and Sarah Seaton
Police National Child Death Working, Eamonn Bridger (see above)
Health & Social Care, Northern Ireland (HSNI), Sinead Magill
Quality, Patient Safety and Maternity, Department of Health of Social Care, Karen Todd
Royal College of Anaesthetists, John Pappachan
Royal College of Emergency Medicine, Damian Roland
Royal College of GPs, Janice Allister and Bryony Kendall
Royal College of Midwives, Mervi Jokinen
Royal College of Nursing (England), Pending confirmation of representative
Royal College of Obstetrics & Gynaecology, Pending confirmation of representative
Royal College of Paediatrics and Child Health, Ingrid WolfeRoyal College of Pathologists, Gauri Batra and Prof Marta Cohen
The National Hub for Child Death in Scotland, Nanisa Feilden and Alison Rennie
Shooting Stars Children’s Hospice, Jo Cohen
Trauma Audit & Research Network, Antoinette Edwards
University of the West of England, Health and Social Sciences Department, Dawn Odd
Welsh Child Death Review Programme, Rosalind Reilly
GP/ Public Health Medical Associate, Nikesh Parekh
Given the wide range of different representatives on this group, the complete absence of any representation for gender dysphoria patients is not just astonishing, it is actually quite revealing. Because that absolute lack of representation shows itself directly in the outcome the work by NCMD.
In the statistics that the NCMD has published on child death for the period between March 2020 ending 31 March 2023, not a single reference referred to patients who were being treated for gender dysphoria. In fact, throughout the entire data set, there is not a single reference to gender found anywhere. That’s on a total of 22 worksheets.
This is obviously relevant given that Professor Appleby’s study references this dataset to make his argument.
Professor Appleby’s dismissal of the concern raised by The Good Law Project is especially nefarious considering that from coroner’s inquests into youth death, we learn the following:
<<QUOTE>>
The Arden and GEM has provided an update on its website entitled the “National Referral support Service for the NHS Gender Incongruence Service for Children and Young People”. This states: “The NHS understands it isn’t easy having to wait a long time to be seen by gender services, and young people may need some extra support with their mental wellbeing while they wait. The NHS is offering this support, if needed, through local Children and Young People Mental Health services (CYPMH), also known as Children and Adolescent Mental Health Services (CAMHS). People will be contacted to ask if they are happy for their details to be shared with their local CYPMH / CAMH service so they can speak to a professional about how they are feeling. This support offer is voluntary and the people’s place on the Children and Young People’s Gender Services waiting list will not change. This service will be contacting parents, children and young people on the waiting list by email or post to ask if they wish to access this support between April and May 2024.”
During the inquest, I heard evidence from senior management at the CAMHS run by Sussex Partnership Foundation Trust to the effect that (i) they were unaware that enhanced support was being offered via CAMHS and (ii) due to existing pressures on resources the enhanced support would likely have an impact on the already very long wait times for CAMHS treatment, which in turn would give rise to a risk of patients taking their own lives while waiting for treatment.
I am concerned that if urgent clarity is not provided to CAMHS teams, patients and parents on the appropriate national referral mechanisms for gender services, and the resources available for those services, there is a risk that the circumstances arising prior to REDACTED’s death could be repeated.
<<END QUOTE>>
Another Coroners report further points to a clear lack of communication within the NHS, aggravating an already dire situation where it concerns healthcare for young people with gender dysphoria:
<<QUOTE>>
CORONER’S CONCERNS
During the course of the inquest the evidence revealed matters giving rise to concern. In my opinion there is a risk that future deaths could occur unless action is taken. In the circumstances it is my statutory duty to report to you.
The MATTERS OF CONCERN are as follows:
1. The inquest heard that there are very long waiting lists for GID clinics. In September 2023, the average waiting time was in the region of 7 years. The expert instructed at the inquest identified that long waiting lists could intensify distress arising from gender dysphoria.
2. The inquest also heard that there is little local support available to patients who are waiting for assessment and treatment by Gender Identity Clinics .
3. There was a lack of clarity as to who is responsible for the wellbeing of the patient during the waiting period, for any distress caused by the gender dysphoria. There was a lack of consensus as to whether it would be the referrer or the GID clinic itself .
4. Local mental health services have very little specialist knowledge as to how best to support a person suffering from GID.
5. Those in attendance at the inquest were unclear about guidance available to GPs and other healthcare professionals to support them with the safe prescribing of bridging hormones, during the lengthy waiting period. The BMA’s guidance on the role of GPs in managing patients with gender incongruence (2022) and the Royal College of Psychiatrist’s advice relating to bridging prescriptions was not known by the healthcare professionals in attendance at the inquest hearing. There is a concern that primary and secondary/tertiary services are not working optimally, to support those during the lengthy waiting periods.
<<END QUOTE>>
In conclusion, I believe it’s more than fair to say that Professor Louis Appleby performed his review taking the narrowest look into the data that he could find. He did not expand to verify his findings, nor did he challenge the quality of the data put before him. As far as research is concerned, that’s not a great look. Unfortunately, Professor Appleby isn’t the first to go down the path of writing a research report which favours his point of view rather than perform a review which looks at what the data actually says, and which scrutinises the data provided. It is a worrying trend which has taken a hold of medical research especially. We’ve seen medical bodies being created to support religious views rather than support patient care and health outcomes. And while transgender healthcare is the first to suffer from this, you can be certain that if this problem isn’t tackled head on, it won’t be the last.