Just Read: Good Practice Guidelines, Transgender Person Care, National Health Service 2013

When I went to visit the oldest gender identity clinic in the world, National Health Service’ Charing Cross, in September, 2013 (see: Visiting the oldest Gender Identity Clinic in the World: NHS’ Charing Cross, London England | Ted Eytan, MD ) These guidelines were sitting on Dr. James Barrett’s desk, almost ready for publication. I just posted that photograph for posterity. More importantly, the guidelines have been published for everyone to see, and now that I know what I know, here’s what I have to say about them.

Broad based support across the medical and citizen community

Based on what I know and what James told me, if you look at page 4-5 of the guidelines, you’ll see that all the major medical professional organizations are represented AND the citizen/patient ones as well. This is no small feat. They should be congratulated for this alone. Although the report is published by the Royal College of Psychiatrists (@rcpsych), chapter authorship is diverse, including Gender Identity Research and Education Society (a patient group), as well as Royal College of Surgeons (@RCSNews) and Royal College of Physicians (@RCPLondon)

The most modern point of view: Care of people who are transgender is … medical care

Providers of services have a positive duty to support this patient-centred approach which is enshrined in the UK equality and human rights legislation.

It’s not just that there are no exclusions to care in the United Kingdom, it’s the law that this care must be provided, without any financial barriers. There is no other medical condition in the National Health service with this type of protection. What the guidelines show is freedom from bias in the coverage of care, and focus on the most modern approaches based on science, which is what doctors are supposed to do anyway. Simple!

We herald a new approach to care which has evolved from a linear progressive sequence to multiple pathways of care which recognise the great diversity of clinical and presentation needs.

Respect, privacy, identity

the UK government and all other agencies..are under a positive obligation to treat such patients with respect and dignity in all areas of their lives, and to accord them equal rights and status with all other citizens

There are clear and strict rules about privacy, which are inclusive of prohibitions of divulging someone’s gender identity and supportive of changing names in medical records. Interestingly, what they do here is change the name altogether, they do not add a “preferred name” to the medical record which is what I see discussed in the United States. Additionally, a person may apply to receive a Gender Recognition Certificate. When that is issued, a person is no longer a trans man or a trans woman. They are simply “man” or “woman” – no trans prefix.

Science and Language

Treatment involving a combination of hormone administration and usually some combination of gender-confirming surgical procedures, following psychological assessment and accompanied by psychological support, is deemed to lead to good outcomes. A study using the post-genital-surgery end-point showed only a 3.8% regret rate and indicates that regrets are few (Landén et al, 1998). The study revealed that regrets were more likely where there was a lack of family support. A review of more than 80 qualitatively different case studies over 30 years demonstrated that the treatment is effective. Lawrence (2003) found that the most significant factor for regret was a poor surgical outcome. Smith et al (2005) undertook a prospective study and found that no patient was actually dissatisfied, 91.6% were satisfied with their overall appearance and the remaining 8.4% were neutral.

The document is science based and avoids mischaracterizations and it uses appropriate terminology throughout, with good definitions. I still see medical and other documents in the United States (from all types of health system environments) that persist in using outdated and sometimes offensive terminology, even though scientific articles are referenced. This is where bias becomes plainly visible. I don’t see that here.

Therapeutic approaches

I’m not going to summarize those since it they require the context of the document. I will say from my read as a physician that the “feel” is one of patient-centeredness and support, i.e. there’s a harm reduction approach in cases where specialized treatment is not immediately available. In other words, the default is “treatment” rather than “no treatment,” which is critical.

This is not an insurance coverage document, because as I mentioned above, there is no barrier to coverage in the United Kingdom. Therapy is provided in consultation between physician, therapist, and patient. There are no lists of which procedures are allowed and which ones aren’t. Again, it’s “medical care,” which is what doctors are good at. Creating lists of what can and can’t be done defeats the patient-physician relationship, which ultimately results in appropriate use of services with the best outcomes (as James explained when I met with him in person, see blog post linked above).

Children

This document does not cover children and adolescents. However, it mentions something that’s lacking in care across all medical conditions in the United States – the successful transition from child/adolescent therapy to adult therapy. Interesting that the care of people who are transgender could stimulate a revolution of innovation in an area that is problematic for many children and adolescents overall.

Innovation, Compassion, Clinical Excellence – doesn’t just come from the United States, doesn’t just come from doctors

If you want to find the centers of true innovation in health and health care, look at what’s happening in the care of populations like this one, who are so challenged in society to even live, much less be healthy. A medical professional must bridge the world of their colleagues, who are at times hostile to these patients and to each other, the world of their patients, who ultimately know what good health is and when they are not receiving fair access to it, and the science, which is often underdeveloped and underfunded relative to groups that experience less bias. To make it through all of these gates and support people in achieving their life goals through optimal health is true innovation.

And..the professionals who pursue this path are exceptional. I always ask every person I meet who provides care to people who are transgender the same question – “why?” because the answers are the best in medicine anywhere. Here’s what Dr. James Barrett told me in 2013:

“This is a patient population who are engaging, do well, and are grateful. It is a privilege and a pleasure to work for them.”

From a technical perspective, surgeons tell me all of those things plus that their work with people who are transgender makes them better surgeons for everything they do because of the skill required.

I can see a time in the United States in the future, but not too far in the future, where our entire medical community is similarly innovative – taking the best knowledge from colleagues around the globe, involving and co-leading with patients, changing the culture not just of medicine but of society, in a leader and not a follower role, to establish what health is (again, in co-leadership with patients), and produce it for all.

Actually it’s already happening, this post is an example 🙂 .

Feel free to take a read and post your thoughts in the comments.