NHS England Trans Questionnaires Aug 2017

NHS England have today issued two questionnaires – one seeking trans people’s experiences of using gynaecology services in England in the last 5 years, and one seeking trans people’s experiences of using non-GIC speech and language therapy services in England in the last 5 years.

Under the draft NHS specialist gender identity services protocol (currently also out for consultation), these are both services where (some) trans people will access care from general hospital services, so presumably this feedback is intended to contribute to improving patient experiences.

For reasons best known to NHS England, this consultation runs for less than 2 weeks, in the middle of the holiday period (closing 27th August), and you have to reply by downloading a Word document, filling it out and emailing back to a named person (so not exactly super-anonymous for talking about gynaecology experiences). I have already provided feedback on this as a consultation mechanism

The surveys are here:

NHS Questionnaire Gynaecology


NHS Questionnaire Speech and Language Therapy

Survey responses should be sent to:

zuzana.bates@nhs.net

Advertisements

New GIC protocols – some initial thoughts

NHS England has now launched a consultation on adult gender identity services. This runs until 30th September 2017.

Overall, I think there’s a lot of positives in there, and it addresses a lot of the frustrating inconsistencies between clinics. There’s an underlying issue about resourcing and capacity to deliver, but as a statement of what clinics should be aiming to achieve, it’s pretty good.

Here’s my initial thoughts on the positives, and on what could be improved.

Positives

  • Explicit statement of equity for non-binary people
  • Explicit recognition that being trans is not a mental illness and that trans people should have autonomy with regard to gender identity and presentation
  • Commitment to meet waiting time standards
  • They will consider Skype and phone consultations where possible (hopefully avoiding the current situation where some people make a 4 hour round trip for a 15 min appointment)
  • Standardised assessment process, which in most cases is completed in 2 appointments
  • Standardising the age limits for service, with extra flexibility on transfers – 17+ go to adult services, <17 are referred to youth services (but can stay there till they’re 20 if appropriate).
  • Clear statement that physical exams should not be routinely performed.
  • Absolute rejection of conversion therapy
  • Everyone now gets a named professional, who is their point of contact., and who checks in with them regularly (can be by email or phone)
  • Clear recognition that not everyone will seek interventions in the same linear, sequential process. This could for example make it easier for trans masculine people who want top surgery but not testosterone.
  • Clear re-referral process for people who have deferred surgery, then come back to the service for their surgery referral.
  • Clear statement that therapy should be available for those who want/need it, but is not mandatory
  • Referrals are acknowledged within 14 days, and don’t get rejected for not being in quite the right format
  • There’s a clear process for transferring people from one GIC to another, without reassessing them
  • Clinics cannot require that family members attend appointments, and if patients refuse a suggestion that family members come along, this cannot affect their care.
  • Surgeons have to demonstrate that they are performing at least 20 procedures a year, and that they are engaging with peers, talking to them about outcomes and complications etc (this is aiming to avoid the situation where you get a surgeon doing a small number of procedures which they are not very skilled at).
  • Clear standards for what info should be made available at consent to surgery, including offering the patient options and talking about pros and cons.
  • Clear statement that if you’re unhappy with surgery and don’t want to be treated by the same surgeon, you have the right to be referred elsewhere.
  • Clear statement that if your BMI is over threshold, you should still be referred to the surgeon, and an individual discussion had about risk (also, BMI threshold for  top surgery is set at 40 – some clinics had been refusing to refer people for top surgery until their BMI was 30, even though many top surgeons are happy to operate on people in the 30-40 range)

Could be improved

  • The big one is that there is currently a dispute between NHS England and the British Medical Association over the role of GPs in prescribing hormones. The document therefore presents 4 options: GP initiates hormones on recommendation of gender clinic (status quo); gender clinic gives 1st prescription and GP continues; gender clinic prescribes for a year then GP continues; or CCG train a specialised GP who does all hormone prescriptions in that area.
    – I think the third and fourth options are very problematic. The GICs don’t currently have capacity to do blood tests and administer injections, and it would mean a long journey for patients. In particular, patients on sustanon or enanthate might be having to travel to their gender clinic every three or four weeks for an injection – clearly impractical for someone in full time work living a couple of hours away from their gender clinic.
    – A specialised GP sounds great, especially if they could do bridging prescriptions – but I don’t think it’s necessary or sensible to say that they should be the only person who can ever prescribe hormones.  There are patients currently in primary care who have been on hormones, managed by their GPs, for several decades. How does it benefit those patients to send them elsewhere in the CCG (possibly a different town) for prescriptions? Plus what happens when that GP is ill, or on maternity leave? Also, the service specification only says what specialised services will do – it can’t place requirements on CCGs. So if the specialised services specification is drawn up expecting CCGs to commission and recruit to these new roles, then what happens if they don’t? The document also makes it clear that the NHS does not know how many trans patients it already has, but it does know the numbers seeking help are increasing. The demand for the new role would therefore be unknown, and rising cumulatively (an unknown number of trans people already taking hormones would all now have to access this service, plus the increasing number of future patients). Realistically, this would be difficult to commission for, and almost certainly experience problems and bottlenecks.
    – I would prefer a model which encourages CCGs to have a GP specialist, and for that to be a point of support for other doctors – but which does not say that only that specialist can prescribe.
    Edited 26/9/17 to note – On re-reading, it does seem as if they are proposing patients should only use the specialist GP for the first 12 months, then return to their normal GP (though this is not wholly clear in the survey itself, only when you read the more detailed document). However, I still think there are potential problems with bottlenecks, what happens if there is no specialist etc.
  • Self-referral would have been nice. It seems to be working okay in Scotland. Although I understand the point about GP buy-in, the GP doesn’t have to be the one who refers the patient anyway.
  • The statement that they will not accept referrals of people with acute physical or mental health problems seems too categorical. In practice, waiting lists are currently 12 months or more – it is pretty likely that someone with an acute health problem at the time of referral will have resolved it by the time they get to an appointment. I think it would be better to say that such referrals will be accepted for the waiting list, but the situation reviewed before an appointment is offered
  • Specialised services won’t take responsibility for problems with surgery that are not picked up till after 18 months. Unfortunately, some people who’ve had bad surgical outcomes find that very difficult to talk about, and they do come forward some years down the line. In some cases, the surgeon has told them they’re making a fuss over nothing, and it may not be till they speak to others or see photos of others that they realise their result was very poor quality.
  • To get a second opinion on surgery that has gone wrong, you have to approach your original surgeon in the first instance and ask them to refer you to someone else. Some people may not want to face the surgeon they’re unhappy with again.
  • Edited 26/09/17 to add – In my final submission to this consultation, I gave a very full response regarding hysterectomy referral procedures. At present, NHS England recommends anyone taking testosterone has a hysterectomy after 2-5 years due to risk of malignancy. More recent reviews (e.g. Feldman, 2016; Wesp, 2017) suggest that actually, risk is largely unproven, and NHS England is recommending hysterectomy in situations where other trans health bodies do now. However, for some people, hysterectomy is an important part of addressing gender dysphoria, and/or helps to resolve other gynaecological problems, and therefore access is improtant. It is not a technically specialist operation – most gynae units can do it. However, if hysterectomy is being done because of gender dysphoria, sign off from a gender clinic is required. The new protocol does not specifically require gender clinics to give that sign-off. It also neither confirms nor denies whether NHS England still officially recommends hysterectomies on the basis of risk.

Sexuality and Gender Identity in the Census

The Census in England and Wales is sent out every ten years to every household. It asks questions about issues such as demographic characteristics, the house you live in, your health and the work you do. This is important for service planning, and for identifying and addressing important social issues. As you might imagine, it’s a big piece of work and it takes a lot of planning, and so work is well underway towards the next Census in 2021.

Up until now, there have been no direct questions about sexual orientation or gender identity in the Census. In the 2011 data, the only LGBT people who are clearly identifiable are those in civil partnerships. That causes problems both for service planning and research. I’ll own up now to a bit of interest in this issue – I used to volunteer on a LGBT switchboard in a posh suburban/rural south-eastern county. It was run by a charity, on a shoestring budget, and we regularly used to go to the multiple Councils and health bodies and police teams that covered our area, and ask them for small grants to help with our running expenses. We’d also ask them to talk to us about how services could be made more inclusive. And on more than one occasion, we were greeted with genuine surprise. Were there really LGBT people needing support in this part of the world? Surely not. And then when the surprise had faded, we were asked for proof. How many LGBT people? Where? What ages? Did they have other intersectional needs? And the simple fact was, there wasn’t any reliable data we could use to make a case. Census data would have made a real difference in being able to highlight areas of need, and I believe it could have led to better services on the ground for LGBT people.

Following consultation about the 2021 census, the Office for National Statistics (ONS) has now cautiously agreed to look further into including sexual identity and gender identity questions . Here’s a summary of the key points from their report.

Sexual Identity

  • The ONS concluded that overall there was a “medium user need” for this data – however, in fact the need for this data scored 8/10 on all measures except continuity with previous surveys (since it has not been on previous surveys, it scored zero for this component)
  • The question they would be likely to use would be a variation on the one currently used by the ONS when interviewing people: “Which of the options on this card best describes how you think of yourself: Heterosexual/Straight, Gay/Lesbian, Bisexual, Other.” One of the potential difficulties is that, unlike with face-to-face interviews, the census is often completed by one household member on behalf of the others, or other household members can see the answer. The ONS has not tested this question in this situation, but there are some obvious problems with asking this question where answers are not confidential, including  the fact that it might put some people in an awkward or unsafe situation.
  • Asking this question would potentially mean a change in primary legislation. In the past, there were concerns by some politicians that asking a question on religion was too intrusive, and as a compromise it was made an optional question. Similar issues might apply here.
  • When this question has been asked in other research, there is a high proportion of don’t know/prefer not to say responses, which is often larger than the proportion of people saying they are definitely lesbian, gay or bisexual. This might affect how useful the data collected is.
  • The ONS has previously found that around one in ten people have said they do not want to provide information on their sexual orientation. There are therefore some concerns that including this question may lead to more non-responses to the Census overall.
  • The ONS suggests that the questions would only be asked for over 16s, as those below this age might not be able to answer this question. Certainly it seems inappropriate to state a sexual identity for very young children, but I’m personally not sure 16 is the right cut off. Their justification for this is that 16 is the age of consent. I think this  problematically ties sexual identity to having sex. It would also make the data less useful for youth services. If the question is likely to be optional anyway, why not allow those under 16s who wish to express a sexual identity?
  • In 2017, a large scale test of the census will be carried out. The ONS will include sexual identity questions in that, and evaluate the impact. Alongside that, the ONS will also conduct focus groups, talk to stakeholders and review existing work regarding collecting data on sexual orientation.

Gender Identity

  • This wasn’t actually included in the ONS consultation – however, they seem to have received a number of “write-in” responses saying this was important, so have decided to look into it further.
  • Overall, the ONS has concluded that there is a medium user need for this data, and that this is particularly the case because there are few other reliable sources of data on the trans and non-binary population. A number of respondents stressed that this is making it difficult to plan services and tackle inequality
  • The ONS states that “sex, as biologically determined, is one of the most frequently used and important characteristics the census collects as it is used in most multivariate analysis of data and feeds into the UK population projections”. I think this is something of a misunderstanding on the ONS’s part about the nature of the data they already collect – I filled in the census in 2011, and I did not respond to the male/female question with my “sex as biologically determined” – it genuinely didn’t occur to me that I should (and even if it had, I still wouldn’t have). Nor is it factually correct to assume that “sex as biologically determined” is a binary issue. I suspect the ONS is already collecting gender rather than sex data on this question. However, their overall point seems to be that it is  important that they be able to analyse differences between men and women, which I don’t think anyone was disagreeing with.
  • The ONS note that it is difficult to come up with a question on this which is acceptable to trans people and comprehensible by cis people. It would only take a relatively small proportion of cis people to misunderstand the question for the number of errors to outweigh the responses from trans people. (Personally, I also think there’s also likely to be an issue of “joke” responses – someone thinks it’s funny to put his housemate down as trans etc.)
  • Previous research has suggested that more than half of trans people would be unwilling to disclose trans status, however sensitively the question was asked. Additionally, census responses may be visible to other members of the household, which is likely to further increase concerns about confidentiality and lower response rates, as well as being very unsafe for some.
  • If gender identity was asked about, it would be likely to be similar to the EHRC recommended questions. This is in fact four questions: sex assigned at birth; how you think of your gender now; do you have the protected characteristic gender reassignment; and stage of gender reassignment (i.e. have you already transitioned, are you currently transitioning, do you intent to transition in the future). This adds a number of extra questions into the census,  which takes up a relatively large amount of space and may cause confusion among those for whom this isn’t relevant (e.g. some people may genuinely not understand why they are being asked about both their sex at birth and their gender now).  I am personally slightly uncomfortable with a set of questions which leads with “sex assigned at birth” – I understand why it is done, but I dislike my birth assigned sex being stated prior to my gender identity. Also, in view of the ONS’s apparent confusion above regarding the supposed importance of analysis by “sex as biologically determined”, I am somewhat concerned that they, or at least some analysts using the data, might treat my sex assigned at birth as the primary category for analysis rather than my gender identity.
  • Again, the ONS is concerned that including questions on gender identity may lead to more people not responding to the census.
  • Again, the ONS say it would need a change to primary legislation to include these questions.
  • Overall, the ONS agrees that there is a need for this data, but they don’t seem convinced that the Census is the way to do it. They therefore intend to review their previous work on collecting trans data, talk to stakeholders and talk to other countries’ statistics agencies to work out the best way forward.

Meeting people online

I’ve commented in the past about the focus  on sex, drugs and mental health in LGBT research. Indeed, it’s the title of this blog. One of the more depressing examples of this is in research on LGBT people’s use of the internet. Now, I expect it won’t come as a shock to you that quite a lot of LGBT people find relationships, friends and sexual partners online or via smartphone apps. When I volunteered on a LGBT switchboard, and in my subsequent membership of various LGBT and trans groups, one of the most common questions which gets asked is “where are good places to meet people?” If you live in a large city, you may have a choice of a few places to go in the real world, but if you’re in a rural area and can’t or don’t want to get to a bar or a club, the internet or an app is often your best bet.

I think it’s a good thing for people who want to meet people to be able to do so. The subsequent encounters don’t need to be committed, or involve binding promises, or only involve two people (though of course they can be all those things). They can be entirely about sex, or not involve sex at at all. Connections can be changeable, fluid and fun. But whatever you’re into it is a good thing for people to be able to find people who they want to socialise with in their preferred manner. Those kinds of connections have a massive impact on people’s mental health, on their wellbeing and ultimately their physical health too.

So what is the research agenda on LGBT use of the internet? As Grov et al point out, it’s basically “how many sexual partners gay and bi men have when they meet online”, and “do they wear a condom”. There’s nothing about the quality of the relationship (except insofar as that affects talking about safer sex or cuts down on multiple partners). As for lesbian and bi women, or trans people, forget it. Do we use the internet? How do we use the internet? Nobody knows. Nobody cares. Occasionally you might see a bit of research on how young LGBT people use the internet, but it tends to be focused on coming out and identity formation early on. The ongoing impact of the internet and socialising for LGBT lives is pretty much unexplored.

You might think that perhaps researchers should stay out of LGBT online socialising. There’s a couple of ways you could make that argument. You could say that researchers should stop poking into private matters about our lives and identity and let us be. Stop treating us as lab rats. Except that they don’t: the journals of sexology and sociology are filled with endless stuff about whether sexuality and gender identity is due to your genes, or how many older brothers you have, or neglectful parents, or sex hormones in the womb, or some bit of the brain being too small/large. There are loads of papers on identity formation, and coming out. Researchers are not staying out of this from respect for our privacy.

Another argument is that research and health speding should focus on proper, serious subjects that can either be used to make money or save people’s lives. Relationships and the internet seem like a slightly dubious area, with little public relevance. Well, we have an ageing population and a government committed to public sector cuts. The UK NHS and social care service is struggling, and realistically it’s going to end up dumping a lot of the responsibility for caring out into the community. It’s going to expect partners, children, friends, relatives and the voluntary sector to pick up even more of the slack than they already do in terms of supporting the elderly and the ill. There are already plenty of initiatives aimed at “empowering” carers, or providing them with respite, because getting carers to do the work is very cost-effective. But many of those initiatives have a lot of unspoken assumptions about who cares for who, and often don’t take into account some of the differences in LGBT social structures. Indeed, there are  many examples of studies looking at relationship status and later life health that apparently haven’t considered the possibility that heterosexuals might have important people in their lives who they aren’t married to. Even outside the issue of providing care, it is also pretty well-known that being lonely is terrible for all sorts of health conditions, mental and physical.   So putting a bit of money into understanding LGBT people’s relationships, and even into helping people make the connections that make them happy, seems like it might be pretty cost-effective.

It’s not just online issues that matter. LGBT groups up and down the country support many, many people by running coffee mornings and walking groups, moderating Facebook groups and internet forums, manning switchboards and undertaking advocacy. Many of them have no paid staff, and volunteers put their own time and money in until they burn out. Many of the things that would make a difference to those groups – enough money to produce publicity material, access to photocopiers, training for volunteers – could be provided by statutory bodies at marginal or no cost. But at the moment, there is very little research that says that social isolation in LGBT people is worth thinking about.

Sex, Drugs and Mental Health

The LGBT health research and promotion agenda is not a balanced one. I’ve volunteered with a number of different LGBT groups, and we always had a pile of health promotion leaflets sent to us by local health promotion agencies and by charities.

Probably 80% were targeted towards gay and bisexual male sexual health. We might have a couple on cervical screening and breast checking for women, and a few on alcohol, smoking and substance misuse. We might have a couple of more general ones about mental health or coming out. More recently, there’s started to be more publications targeted at trans people, usually focused on medical transitioning. Very, very recently there have also been some sexual health publications for trans people. And that was about it.

That health promotion literature more or less reflects the state of current LGBT health research. It’s also often reflected in the funding available: one of the groups I volunteered with provided general support to the LGBT community on a wide variety of issues, but it got its funding on the basis of HIV prevention. There’s often also funding for supporting young LGBT people with issues such as coming out, but it typically stops at 18, or 25 if you’re lucky.

But let’s just think about what’s missing in that. The LGBT Public Health Outcomes Framework collects together what evidence exists on LGBT health issues. Here;s a few little excerpts:

  • “There are no data on cancer incidence, diagnosis, treatment, survival, morbidity and mortality among LGB&T populations.”
  • “… it is reasonable to assume that there will be inequalities in [preventable mortality] affecting the LGB&T community.”
  • “… it is reasonable to extrapolate that [the LGBT] community will be potentially more at risk of excess winter deaths.”
  • “There is no evidence in relation to lesbian and bisexual women, or trans individuals [with regard diabetes]”

There’s also little or no evidence on heart disease, liver disease, dementia or respiratory disease.

HIV is a serious disease. Suicide is tragic. But most of us are going to die of things like cancer, heart disease and lung disease. Many of us are going to live for many years with conditions like dementia and diabetes. Those are diseases where prevention, survival and quality of life are clearly linked to issues like economic exclusion, social support and trusting your doctor enough to tell them if you think there’s a problem. It’s scarcely a big leap to say that being LGBT is probably relevant. But at the moment, the best we can say is “it is reasonable to assume” that LGBT people may be dying early of diseases that could be prevented. That isn’t good enough

Undoubtedly part of the reason for this is timescale. Mental health, substance abuse and HIV are issues where an intervention can potentially have a measurable effect here and now, and sometimes you can point to the difference made in a specific case. It’s easy to make a financial and moral case for researching that. Whether an intervention has actually prevented heart disease might require thirty years of population data to work out, and even then you might still struggle to disentangle it from wider social trends. But social isolation among older LGBT people is something where it would be pretty easy to carry out an intervention which has an immediate measurable impact, and which would tend to be beneficial for a wide number of health indicators. Ageing, social support and health are huge issues for the NHS right now. Why is there so little out there on older LGBT people.

Another issue is the old “it’s too embarrassing to ask” one. Of course not everyone wants to talk about their identity and everyone should always have the right not to say, but there still seems to be an assumption that simply including the question on an equal opportunities form will lead to patients fainting in shock or storming out of the waiting room in disgust.

It’s hard not to feel that the hidden issue under some of this is due to the interaction between age, sexuality, and gender. The health issues which get highlighted in the LGBT community are those which stand a fair chance of affecting younger people, and especially young men. Ill health, or even death, among the young is shocking. And if someone commits suicide due to hateful bullying, or dies young of AIDS, the cause is clear. It’s harder to work up activist passion about the fact that one group on average gets a chronic disease associated with age a year or two earlier than another. Plus there’s still a sense that our society doesn’t really want to think about older people as having sexual and gender identities, other than very limited stereotypes of grandma and grandpa.

The optimistic view says perhaps it’s just because we’re in a transitional phase. Perhaps now there’s greater equality all these issues will work themselves through, and by the time my generation reaches retirement no-one will be embarrassed to discuss sexual or gender diversity, and there will be few inequalities to identify anyway. Perhaps so. But if we are in a transitional phase, that’s because of the activism and campaigning by the LGBT people who are older now. It doesn’t seem fair to ignore their wellbeing, here and now, while we lie back in the expectation of a glorious future. And if we aren’t in a transitional phase, if the problems aren’t all fixed, we’re going to really regret not acting when we become the older people.