GIDS interim service specifications: WPUK submission to NHS England

GIDS interim service specifications consultation (NHS England)

Read the GIDS interim service specifications here.

Background to the consultation

In September 2020, NHS England commissioned an independent and wide-ranging review of gender identity services for children and young people. The Review, which is ongoing, is being led by Dr Hilary Cass, past president of the Royal College of Paediatrics and Child Health. You can read the Cass Interim Report here.

The Cass report was established in response to a complex and diverse range of issues including:

1. A significant and sharp rise in referrals.
2. Marked changes in the types of patients being referred which are not well understood.
3. Scarce and inconclusive evidence to support clinical decision making.
4. Long waiting times for initial assessment and significant external scrutiny and challenge surrounding the clinical approach and operational capacity at GIDS.

Cass published an open letter to the NHS earlier this year, outlining concerns around current provisions. Consequently, the Tavistock GIDS Centre will close in the Spring of 2023. It will be replaced with regional centres, where it is hoped, young people will receive a more careful, holistic clinical approach ensuring their complex needs are properly met.

As part of the new service design, NHS England has invited stakeholders to respond to the recommended GIDS interim service specifications.

Our submission is here:

Summary

We broadly welcome the proposed NHS England’s interim service specifications and the direction of travel towards evidence-based trauma informed care for children and young people expressing a trans identity/ gender in-congruence/ gender dysphoria.

We appreciate this is interim/short term guidance, but we have concerns around the lack of framework in relation to social transition. In our view this particularly impacts on the welfare of girls due to both their particular cultural experiences and as the majority service user group.

There is a need for the interim guidelines to take further steps to promote and cascade evidence based information, especially in relation to breast binders, suicidality and puberty blockers.

The NHS and CAMHS must take considerable steps to design medical and support services for detransitioning and desisting referrals.

To what extent do you agree that the interim service specification provides sufficient clarity about approaches towards social transition?
Disagree

WPUK is reassured that the Cass review recognises that the outcomes of social transition are not fully understood.

We support Cass’s acknowledgement that social transition is a controversial pathway.

We agree with Cass’s recommendation that social transition should not be viewed as a neutral act and instead as an ‘active intervention’. Social transition should be considered by clinicians and other professionals as a significant step that impacts on health outcomes. (1) (2)

The GIDS interim service specifications do not include a clear definition of ’social transition’. A clear definition is essential to provide a standard clinical framework and address inconsistencies in care.

A clear definition of ‘social transition’ will help the child/young person, their family, clinicians and professionals manage expectations and understand the intended and unintended consequences of ‘social transition’. It is fundamental to enabling informed decisions that the child/young person is clear about the distinctions between sex and gender and that gender transition does not change a person’s sex.

When a child/young person enters a pathway of social transition clinicians and professionals should be clear about managing expectations. It is important to help them manage expectations that may not be affirmed as the sex they identify with in some scenarios and that there are important reasons for this. For example in using services, spaces, sports etc the child/young person should be made aware, in an age appropriate way, about the risks of using spaces for the opposite sex, especially if the trans identifying child is female, because of vulnerabilities and risks around sexual assault in mixed-sex spaces. For example using communal male dormitories on overnight school/ club trips.

It is acknowledged by Cass that social transition can have significant effects on the child or young person in terms of their psychological functioning. Consequently the same caution is applied to pre-pubertal children as well as older children.

It is important that clinicians and professionals understand that there are a range of pressures that can lead to a child or young person expressing a transgender identity. As Cass acknowledges, data shows that there has been a huge increase (3) in young people identifying with gender dysphoria particularly teenage girls (4) and those with autism. (5) There are also indications that this unease with one’s sexed body may be due to a multiplicity of complex causes including trauma, neglect, abuse and a range of mental health issues. (6) 

The definition of social transition must not embed sexist notions of what it means to be a girl/boy, female/male, women/man. GIDS clinicians have stated:

‘In the clinical setting we have become familiar with narratives, especially in younger children, resting almost entirely on the most superficial of signifiers: toys, activities, hair, clothes, a certain aesthetic upon which effectively the (self) diagnosis of trans is made, and a social role transition affected. Unfortunately these tropes are compounded and perpetuated by some “diversity” training delivered in schools.’ (7)

Some schools, media etc still perpetuate sexist notions of the correct way to be ‘female/male’, ‘girl/boy’, ‘woman/man’. It is vitally important that GIDS interim service specifications ensure that these sexist and regressive tropes are challenged, and sexist notions are not embedded into care pathways. Service specifications must include tools to support children/ young people to explore these themes.

The social and psychological factors influencing children, are occurring within the wider context of the decimation of local child and adolescent mental health services (CAMHS) over the last decade. We are seeing a generation of young people emerge who have been poorly served by local specialist provision. (8) Guidelines must acknowledge the link between skeletal CAMHS services, the practice of affirmation and the surge of referrals to GIDS.

All and any of these potential causes must be addressed in the treatment of young people with gender dysphoria before any significant steps are taken. If social transition involves teaching a child that they are the opposite sex then this should be perceived as a significant step.

To what extent do you agree with the approach to the management of patients accessing prescriptions from un-regulated sources?
Agree

Are there any other changes or additions to the interim service specification that should be considered in order to support Phase 1 services to effectively deliver this service?

There is more scope to provide children/young people and their families with extra resources around social transition. Up to the point of referral it is likely that service users may have engaged with a range of advice and theories around transition that may include low quality and unsafe advice. Clinicians and professionals should acknowledge that even verified charities such as Mermaids have, against best practice and NHS guidelines stated that puberty blockers are reversible:

‘Puberty blockers are an internationally recognised safe, reversible healthcare option which have been recommended by medical authorities in the UK and internationally for decades.’ Mermaids statement September 2022. (9)

Therefore the GIDS interim service specifications must acknowledge the broader culture of misinformation in which they are operating and take meaningful steps to communicate and cascade fact-based advice throughout the related services.

An obvious example is the practice of breast binding, yet there is little evidence around the long term impacts of wearing binders. Commercial breast binders are often recommended as the safest option yet ‘Health impact of chest binding among transgender adults: a community-engaged, cross-sectional study’ by Peitzmeier et al (10) finds that:

Over half of respondents used commercial breast binders with 97% reported negative side effects with pain (chest, shoulder, back and abdominal) being the most reported symptom. Other symptoms include overheating, fatigue, breast changes, joint dislocation and fractures. 

The NHS should directly address the unsubstantiated notion that a child, if not transitioned/affirmed is likely to commit suicide. Phrases such as ‘“I’d rather have a living son than a dead daughter” have permeated public thought on this issue. There is no credible evidence that transition alleviates suicidal ideation among children who identify as LGBTQ+. (11) The NHS should promote accurate information for parents and schools. This must promote safe discussions about suicide/suicide ideation inline with Samaritan guidelines to reduce harm to service users and their peers re suicide contagion. (12)

Detransitioners and desisters should be provided for in service provision. (13) (14)

To what extent do you agree that the Equality and Health Inequalities Impact Assessment reflects the potential impact on health inequalities which might arise as a result of the proposed changes?
Partially agree

We are concerned that including ‘gender identity’ in the Memorandum of Understanding on Conversion therapy impacts on equal health outcomes as it prevents broader discussions around the expression of a trans identity. (15) As Cass acknowledges, ASD children/young people and children who mature into same-sex attracted adults, are over represented in both referrals and detransitioner groups. (16) 

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A Woman’s Place is Whistle-blowing

We would like to thank all of those who have worked tirelessly to raise evidenced safeguarding concerns about the culture and practices at GIDS. It has been an honour to offer a platform to so many of them since we were founded in 2017.

#WPUKLewes this summer was the most recent WPUK meeting to address the many issues with GIDS. Thank you to Sonia Appleby (previous Director of child safeguarding at the Tavistock and Portman trust), Stephanie Davies Arai (Transgender Trend), Sue Evans (GIDS whistle-blower) and Rachel Rooney (award winning children’s poet) for contributing so candidly.

Our work is funded by the kind donations of our supporters.

 

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GIDS interim service specifications: References

(1) Clinical Management of Gender Dysphoria in Children and Adolescents: The Dutch Approach (2) Debate: Different strokes for different folks – Zucker – 2020 – Child and Adolescent Mental Health – Wiley Online Library (3) Minister orders inquiry into 4,000 per cent rise in children wanting to change sex (4) Referrals to the Gender Identity Development Service (GIDS) level off in 2018-19 (5) Assessment and support of children and adolescents with gender dysphoria (6) The ‘Natal female’ question by A Hutchinson and M Midgen – Woman’s Place UK (7) The ‘Natal female’ question by A Hutchinson and M Midgen – Woman’s Place UK (8) A Report from the Association of Child Psychotherapists on a Survey and Case Studies about NHS Child and Adolescent Mental Health Services June 2018 (9) Statement in response to a Telegraph article published Sunday 25 September – Mermaids (10)  Health impact of chest binding among transgender adults: a community-engaged, cross-sectional study (11) The 41% trans suicide attempt rate: A tale of flawed data and lazy journalists | 4thWaveNow (12) Guidance for covering youth suicides, clusters and self-harm | Samaritans’ media guidelines (13)  Medical and Mental Health Needs of ‘Detransitioners’ Largely Unmet (14)  Detransition: a Real and Growing Phenomenon | SEGM (15) Memorandum of Understanding on Conversion Therapy: Full Expose (16) Sexuality – Stats For Gender

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