The struggle for GPs to get the right care for patients with gender dysphoria
BMJ 2020; 368 doi: https://doi.org/10.1136/bmj.m215 (Published 22 January 2020) Cite this as: BMJ 2020;368:m215
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Dear Editor,
I am concerned to see yet another article in the BMJ trying to persuade GPs to get involved in prescribing for patients who express a desire to be the opposite sex. I am concerned at the journal’s editorial bias on this issue at a time when, as the article says, the number of young people wanting referrals to gender identity clinics because of gender issues has risen hugely and we are reading and seeing more cases of detransitioners who start going down the gender changing pathway and then regret it. The high incidence of autism, eating disorders, mental illness and previous sexual abuse in young people with gender dysphoria is documented. Many have also been bullied for expressing same sex attraction and don’t fit in to the sexual stereotypes for their sex which are more rigid now than they were in the 1960s-1980s when there were hippies, glam rock, punk androgynous pop stars like David Bowie, Marilyn and Annie Lennox. Then you didn’t have to say you were “non-binary” to step outside sexual stereotypes you just did it. Clothes and make up were just clothes and make up.
Webberley links to the UCSF guidelines as an example of the “excellent published guidelines” that the UK might adopt, yet the section of those guidelines covering children and adolescents concludes: “Gender-affirming care for transgender youth is a young and rapidly evolving field. In the absence of solid evidence, providers often must rely on the expert opinions of innovators and thought leaders in the field; many of these expert opinions are expressed in this youth guideline.”
https://transcare.ucsf.edu/guidelines/youth. Most of the “experts” are not objective on transgender issues.
I think young people with gender dysphoria need compassion and help, particularly objective help.
I also think that all people having medical interventions for gender dysphoria should be part of a long term clinical trial so that we know who should be treated and with what, what the long term side effects and complications are and also get proper statistics on detransitioning as many people who change their minds about their desired gender identity just don’t return to gender clinics so are not counted in statistics at the moment.
Over half of the patients I referred to our local gender identity clinic changed their minds.
Many young people referred to GICs default their first appointment suggesting that the numbers on the waiting list do not reflect the numbers with persistent gender dysphoria. I find that my local CAHMS service is reluctant to get involved with any patient I refer if I mention gender dysphoria to any degree and suggests that I refer them to the gender clinic instead.
GPs should not be getting involved in prescribing for people with gender dysphoria just because there is a waiting list.
Competing interests: No competing interests
Dear Editor,
its welcome that the BMJ is publishing articles on transgender healthcare. Whatever your views, this is an issue of foundational significance to the proper role of doctors, and medicine in general. Given the current climate, it's odd that Sally Howard makes no mention of the elephant in the room ; many doctors, including GPs , don't have faith that the 'specialists' are doing a competent job. There is currently a case in the High Court brought by a mother of an autistic child and a 23 year old woman who regrets the hormone treatment she received as a child. The case is against the 'gold standard' Tavistock and Portman NHS Trust. They assert that under 18s cannot give informed consent to medical treatments with life long consequences.
A recent doctors.net survey demonstrated what may be the prevailing view of doctors up and down the country, many seeing the results of the current treatment regime in their clinic rooms. 476 doctors answered the question : ‘This week, a landmark test case to determine whether children can provide informed consent to gender reassignment is to be heard. Are you confident that the application of informed consent process is valid ?'. 16 agreed ( 3 %), 66 were unsure ( 14 %) and 394 disagreed ( 83 %). So 97% of the doctors that answered this poll did not think, or didn't know, that the ‘consent’ was valid ! The implications of this are grave, if we reach a point collectively, where it is not considered ethical to treat children with puberty blockers and cross sex hormones, considered by many to be experimental with unknown long term outcomes, this will be a medical scandal of epic proportions, happening now in plain sight. Yet its not even mentioned in an article about the need to expand gender services.
Another elephant in the room : over 30 members of staff in recent years that have left NHS gender specialist treatment centres in protest at the poor standards of care. A cardinal concern being that patients are rushed through. It is considered 'unethical' to explore properly, with curiosity and time, patients as a whole, leaving space for initially unconscious drives to become apparent. The 'affirmative' approach, in which gender dysphoria is understood as a fixed state to be celebrated is currently the national modus operandi and is contrary to good patient care in psychiatry. To consider it a 'good outcome' to reach a point where a patient does not want life long medical treatment and surgical treatments with significant side effects, is considered 'conversion therapy'. We are expected to celebrate (rather than accept as necessary for some) medical and surgical treatment on normal disease free tissue.
And what about the detransitioners? We are lead to believe that there are vanishingly few that regret treatment - yet no-one is counting them. There are many speaking up on social media, and they are getting organised. Gender clinics don't offer any services or guidance for them. The very studies that trans 'affirmative' advocates cite have very high rates of ; ' lost to follow up', but no curiosity to understand what has happened to them.
Lets stop pretending this issue will be solved with more money and training (- training in what exactly ?) We need to have an open mature discussion as a profession, which can then inform research. So that any increase in funding is actually money well spent. No care is better than harmful care and though GPs may be overworked and many not equipped to deal with this issue, they are also averse to referring patients for inadequate care, the results of which, for many patients, will be unsatisfactory and as a result GPs will be picking up the pieces for years to come.
Competing interests: No competing interests
Dear Editor
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.
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 life 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.
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 intersections 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?
[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-positi...
[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
Competing interests: No competing interests
Dear Editor,
Once again we read about the difficulties faced by doctors who are asked to provide care for their trans patients. Yes, gender dysphoria can be a ‘difficult terrain for primary care doctors’, but it is also a difficult terrain for trans patients.
Sally Howard has carefully balanced the plight of patients stuck on long waiting lists to see specialists, with the difficulties presented by the lack of education available for doctors. She mentions that gender identity and gender dysphoria are not part of the GP curriculum, but startlingly, they are not part of any Royal College curriculum. If we examine the core competencies of the current GMC approved curricula for all of the specialties, in particular the curricula for the core competencies of General Practice, Paediatrics, Paediatric Endocrinology, Child and Adolescent Psychiatry, then the needs and care of transgender patients only exist in the GP curriculum.
There is no specific GMC speciality or sub-speciality for doctors providing treatment to transgender patients. In the section of their website on education, the GMC states: ‘We set the standards for providers of medical education and training, and we regularly check to make sure those standards are met. Here you'll find the standards, guidance and curricula we publish along with supporting materials.’ https://www.gmc-uk.org/education
How can standards be set, if the core competencies of a doctor’s knowledge do not include care for this patient group?
In the current absence of UK educational materials, doctors have a duty to seek out international guidance to help their patients. There are excellent published guidelines for GPs which have been written to ‘equip primary care providers and health systems with the tools and knowledge to meet the health care needs of their transgender and gender nonconforming patients.’ How is it still so acceptable for doctors not to undertake personal learning to address their lack of knowledge?
https://transcare.ucsf.edu/guidelines/introduction
Sally Howard quotes The Royal College of GPs advising their GPs to not feel ‘expected to fill gaps in commissioned gender identity specialists and clinics.’ However, this leaves their patients unsupported and them open to litigation battles. Is this really the best advice for their members?
Articles such as this continue to reinforce the narrative that this is a ‘difficult’ and ‘complex’ issue that needs specialist training. Few publications that write about the difficulty faced by doctors in their lack of knowledge and skills, actually pin down what the patients are asking their doctor to provide.
In her letter to the BMA back in 2016 regarding their response to the GMC Guidance for doctors treating transgender patients, Susan Goldsmith, acting Chief Executive for the GMC, wrote, ‘While GMP [Good Medical Practice] states “you must recognise and work within the limits of your competence”, this principle cannot be a bar to doctors taking on new responsibilities or treating unfamiliar conditions.’ She went on to say that ‘…we don’t believe that providing care for patients with gender dysphoria is a highly specialised treatment area requiring specific expertise.’
https://gendergp.com/wp-content/uploads/2018/02/Susan_Goldsmith_to_Chaan...
Patients need belief, support and medication. They are not asking to be ‘diagnosed’; they are asking to be believed when they explain how their gender feels different to the one they were assigned at birth. They are not asking for medications that are addictive, dangerous or that require extensive monitoring. They are asking for medications in common use in every day practice. Medicines such as estradiol, testosterone and GnRH agonists. Commonly used medications when treating menopause, androgen insufficiency and prostate cancer. They are not asking for deep psychotherapy, they are asking for support to help them navigate their lives.
And who is better placed to provide this than their GP?
Competing interests: No competing interests
Re: The struggle for GPs to get the right care for patients with gender dysphoria
Dear Editor
We welcome Sally Howard’s article on how difficult it is for GPs to get the right care for patients with gender dysphoria; and we share the concerns raised regarding expectations that GPs might be expected to fill the gaps in commissioned gender identity specialist services. We would however like to make a minor correction regarding the comment that gender dysphoria is not part of the GP curriculum.
Since the Royal College of General Practitioner’s position on caring for transgender patients was published in June 2019, a revised and updated RCGP Curriculum has been launched, so as of August 2019, gender dysphoria and transgender health issues are now included in the GP curriculum. It is also the case that the RCGP’s e-learning course on gender variance has not yet been published, but is due to be later this year.
Yours faithfully
Dr Jayne Haynes
On behalf of the RCGP Curriculum Development Team.
Competing interests: I am a member of the RCGP Curriculum Development Team