Our BMJ Rapid Response, published 27 January 2020 at https://www.bmj.com/content/368/bmj.m215/rr-0 in response to this article by Sally Howard about the difficulties faced by GPs caring for young people with gender dysphoria.
Supporting parents of children with gender dysphoria
With 4000 children and adolescents now on the GIDS waiting list, Sally Howard’s [1] article helpfully draws attention to the difficulty GPs have in delivering care for young patients with gender dysphoria. But in fact, the primary burden of care falls on their parents.
We are a support group for parents of adolescents and young adults who identify as transgender or non-binary, many of whom are prospective, current or former patients of GIDS or an adult GIC. Our parents come from all regions of England, Wales, Scotland, Northern Ireland, and the Republic of Ireland. We operate a confidential online forum, hold meet-ups around the country (during the past weekend in Bristol and Leeds, for example), and have published compassionate and practical advice for parents [2]. We would be glad to collaborate with GPs and other healthcare professionals and groups, in developing our support services further, and invite qualified readers to contact us.
We aim to reduce parents’ feelings of isolation, to inform and encourage parents in advocating on their child’s behalf, and to support them in responding to their child’s gender distress sensitively at what can be a vulnerable time for family relationships. Our parents have children with complex needs that pre-dated the adoption of the trans identity (none of these children identified as trans before adolescence). Many of us are in autistic families, others have ADHD, or the children are adopted and suffered trauma, or there’s been bad homophobic bullying, or eating disorders, or extreme anxiety.
We aim to reduce parents’ feelings of isolation, to inform and encourage parents in advocating on their child’s behalf
Sally Howard draws attention to the research of Anna Carlile, which points to “a lack of attention or interest from healthcare providers in listening to the voice and expertise of the children and parents involved.” [4] The Royal College of General Practitioners underlines that “parental and carer involvement in the care of these patients is crucial.” [3] Carlile reports that “the existing literature suggests that parents and healthcare practitioner could garner positive results through collaborative working.” [5] We share the concerns of many GPs that halting natural puberty in gender dysphoria is an intervention of unproven benefit [6] and that further independent research is urgently needed, including into ‘wait and see’ approaches, so that treatment decisions can be based on robust evidence. [3] In the words of Carl Heneghan, Professor of Evidence-Based Medicine at Oxford University, “we have accepted that individuals facing distressing life-changing situations are ill informed.” Medical interventions for gender dysphoria are largely “an unregulated live experiment on children.” [7]
Unsurprisingly, then, we reject simplistic notions of parents being ‘unsupportive’ simply because they may not share their child’s ideas about gender; or “parents who may not be accepting of what is happening to their child.” [3] There are many ways for us to support our children, and the NHS should look to build common ground, not point fingers. Parents are robust advocates for their children’s best interests, to whom they have a unique lifelong commitment. It is our job as parents to help children gain the thinking skills that will lead to good choices & rewarding lives, whatever those may be.
We recognise that this a contested area of medicine, and that within healthcare professions as much as within society at large, ideas about gender identity are viewed from diverse and often conflicting perspectives. Our parents are united by the sense that our children’s trans identities complicate their mental health or developmental situations – not least because, following the adoption of a trans identity, schools and CAMHS can struggle to situate the child’s broader challenges in any context but gender identity, as if transition were a catch-all solution rather than a perhaps fresh signal of the child’s distress. As parents, we seek to understand what problems our children are seeking to solve in proposing radical medical interventions, and why they locate these problems within their own bodies. All too often, though, we find that the NHS has no curiosity for such important questions.
As parents, we seek to understand what problems our children are seeking to solve in proposing radical medical interventions, and why they locate these problems within their own bodies.
Currently, policymakers and researchers are receptive to only one particular segment of opinion, drawn from populations already committed to the medical pathway. The NHS is struggling to hear another, larger, constituency, of families that doubt that invasive medical interventions, unsupported by reliable evidence, is in their children’s interests, especially alongside longstanding mental health and/or developmental challenges whose intersection with gender identity are poorly understood. The idea that 80% of dysphoric children desist has come under criticism recently, but it seems clear that the significant majority of children do resolve their gender ID in favour of their natal sex by adulthood. Where is the advocacy for the mental health needs of that majority?
James Thornhill
Tom Hyde
hello@BayswaterSupport.org.uk
www.BayswaterSupport.org.uk
@BayswaterSG
Notes
[1] https://www.bmj.com/content/368/bmj.m215 [Sally Howard’s article]
[2] https://www.bayswatersupport.org.uk/toptentips
[3] https://www.rcgp.org.uk/-/media/Files/Policy/A-Z-policy/2019/RCGP-position-statement-providing-care-for-gender-transgender-patients-june-2019
[4] https://www.gold.ac.uk/news/healthcare-experiences-for-trans-children/
[5] https://www.tandfonline.com/doi/full/10.1080/15532739.2019.1693472
[6] https://www.bmj.com/content/367/bmj.l6439
[7] Professor Cal Heneghan, ‘Doubts over evidence for using drugs on the young’, The Times, 8 April 2019
