No Data, No Plan

What happens if healthcare pays more attention to offence than data?

There are signs that the tide is turning on gender ideology, and we may yet see women’s legal rights to privacy, safety and dignity properly upheld in the UK. However, the clinical issues remain in need of some attention.

We don’t know how many people have gone through gender interventions, and are not collecting data on how they are doing. We know next to nothing about those who have demedicalised, detransitioned or desisted.

I do think gender interventions in their current form will, eventually, stop - but many people will be left living with the consequences of hormones and surgery.

In 20 years society will probably view bearded women with mobility aids as victims of flawed medical advice. We have seen this before, we used to see people around who had visible signs of being injured by thalidomide. You knew that person’s mother followed medical advice she trusted, the consequences of which changed the family’s lives forever.

Most will now be in their 60s, and I don’t see many people with thalidomide injuries around any more. Thalidomide survivors often live with pain, fatigue and reduced mobility, and many need rehabilitation and support. Those needs could not be anticipated when they were born.

I expect the long-term physical consequences of gender interventions will be similar. A population with complex, long-term health needs was created, and we should be planning the services they will require.

So, what harms from gender care am I talking about? There are many gaps in the evidence base for efficacy, but the data on unintended physical effects should be seen as more hole than colander. Patterns are emerging, but they are not well described, not systematically collected, and not translated into clinical guidance.

We know that people who take cross sex hormones report shared experiences of pain, weight gain and, in females, vaginal atrophy. The clinics seem to avoid these issues, and the people with them are reluctant to talk about them because saying anything negative about transition can get you shunned by the community. It seems to me that the “be kind” community isn’t very compassionate or supportive.

Without good data we cannot determine need, and without determining need we cannot build a safe, effective clinical service.

Consider a female person who would not thank me for calling her a woman. She starts testosterone at 18 in an attempt to manage distress. Taking testosterone in large doses suppresses ovarian function, and her body enters a low-oestrogen state, similar to menopause, decades earlier than the average age of around 51.

If a woman under 45 becomes menopausal, the care pathway recommends she be offered HRT because loss of oestrogen affects bone, cardiovascular and brain health. That guidance exists because we have data, understand the risks, and can therefore plan for them.

What we do not know is what happens when that endocrine disruption begins at 18. There is no robust, longitudinal data examining what happens to bone density, cardiovascular health, mental health or, indeed, anything else if normal endocrine function is disrupted early in life. But we know enough about the consequences of oestrogen loss to routinely offer HRT to women 25 years older, so it is reasonable to assume that whatever happens is unlikely to be brilliant.

Pelvic pain, incontinence and sexual dysfunction are commonly reported, yet there are no guidelines for GPs or pelvic health physiotherapists to follow. Anecdotally, lots of these people also complain of reduced mobility, exercise intolerance, genital pain, joint pain and muscle pain, which are barely described in the literature.

The gap is even wider for people who stop using cross sex hormones. We know almost nothing about what changes after stopping hormones, or what common complications persist after surgical interventions.

There is an established need for shoulder care after single mastectomy for cancer, so why is there no equivalent pathway to prevent shoulder dysfunction for those who have had a double mastectomy in an attempt to manage gender distress? Why are we not following these people up? A stiff, painful shoulder is surprisingly disabling, people should not be expected to put up with it, never mind two.

Physiotherapy routinely contributes to the management of cardiovascular disease such as stroke and heart disease, mental health conditions, obesity, osteoporosis, musculoskeletal disorders and pelvic health. We are used to managing complexity caused by accident or neurological conditions. We can use our bread-and-butter skills to piece together support for issues related to gender, but we first need to establish what people are experiencing, how it is affecting their function, what help they have been offered and what is missing. However, it seems that either no one thinks it is their job, or they are too afraid to take it on.

Afraid? Yes, the workforce is nervous. If clinicians cannot state basic biological facts without being accused of prejudice, they will not want to work in this field. Much has been made politically of the appalling waiting lists for gender services, but there has been little analysis of there is a recruitment and retention problem.

My view is that working in an area where evidence is weak, guidance is absent, and open discussion is constrained and carries the risk of disciplinary action is not very appealing.

All of which means there are people living with debilitating physical and mental symptoms who have no clear pathway to help. There are potentially tens of thousands of people with unmet clinical needs.

I am presenting work I co-authored with Professor Ruth Parry on physiotherapy approaches to managing the health impacts of gender interventions at CAN SG in July. If you can make it along to the conference then please do, especially if you disagree with everything I have said - debate is how excellence is established.

I’ve got a small multidisciplinary group looking at how we can establish unmet need more systematically. If you’d like to be involved let me know.

If no one thinks this is their job then maybe I’ll have to make it mine.