Why can’t NHS screening services include trans patients?

NHS patients are regularly invited to screening tests for different conditions. The tests can be inconvenient or uncomfortable, but the evidence on screening clearly shows it identifies risks early, prevents disease, and saves lives. Patients are at greater risk if they don’t receive invitations, or receive the wrong information.

Trans patients can request to alter their gender marker and are given a new NHS number. Any gendered words are replaced with their new pronouns. However, this also changes their eligibility for screening programmes as many of these are gendered; men and women commonly receive different tests.

Trans patients may be given a leaflet about screening programmes and are invited to self-refer, and will receive no invitations other than those relevant to the gender marker on their NHS record. Therefore, for example, not all patients with a cervix are invited to cervical screening. Contrastingly, if a cis woman has a full hysterectomy, for example, their GP has a simple form to fill out to remove the patient from the cervical screening register as it is no longer relevant to her body. Trans patients should be included on screening registers that are relevant to their bodies.

Historic inequalities within healthcare for the LGBT+ community results in patients who are not comfortable in a healthcare setting. The LGBT Foundation, with projects such as Pride in Practice, is aiming to improve this, but whilst Public Health England (PHE) admit there are inequalities within services, they suggest population screening is inherently equitable. Yet, the issues they aim to improve barely mention gender inequality or LGBT+ communities.

Further, LGBT+ communities are prone to risk factors such as higher rates of smoking, alcohol consumption, and drug use, which can increase the risk of cancers including breast, mouth, and bowel cancer. Some trans patients may find some screening tests, discussions of body parts, and intimate examinations distressing; however, given the higher risk of cancer, screening trans patients should be a high priority, or at very least their personal choice.

PHE encouraged gender identity monitoring in the past, but so far nothing has changed about the way trans patients are screened: the responsibility is largely on the patient themselves. In good GP surgeries patients may be supported well, but dependency on individual practices inventing their own solutions isn’t an appropriate or efficient way to handle the problem. The PHE screening information leaflet exists but does not go far enough to fix the inherent problem. Autonomous control over healthcare is a responsibility not given to cisgender patients, who receive regular reminders from the national services. Trans patients are not being treated equally and are left needlessly disadvantaged, regularly losing out on the best chance to catch early signs of cancer.

According to the Equality Act 2010, in this case trans patients are being discriminated against because of their gender reassignment. Screening based on gender binaries effectively assumes a trans patient to have opted out of screening they may still need, and should be encouraged to attend, all without their informed consent. Early intervention following screening preserves patient quality of life better and frequently saves the NHS money by simplifying treatment. It simply isn’t acceptable that trans patients receive substandard care and potentially have their lives put at risk because the system currently isn’t recognising trans patients’ needs.

Screening services must not continue treating the LGBT+ patients as anomalies. There is no reason why the trans community cannot be equally protected and included within the national screening programme on the basis of need, not gender binaries.

* Elle Cronin is a Lib Dem campaigner. She works in the NHS facilitating screening and ongoing care for chronic conditions. Greg Webb is a Lib Dem campaigner and former parliamentary candidate.

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9 Comments

  • However worthy and desirable the aims of this article may be, I suspect the NHS has rather more immediate pressing concerns at this precise moment.

  • @David Raw – you could make that argument about any non Covid-related health issues at the moment. That doesn’t mean we shouldn’t think about them ahead of the time when action can be taken.

  • John Marriott 21st Jan '21 - 12:14pm

    I tend to agree with David Raw (surprise, surprise).

  • David Evans 21st Jan '21 - 1:32pm

    I am pretty sure that some people in the NHS have been thinking about this for a while now. The problem will be the the behemoth that goes under the name of “The NHS computer system.”

    Many of us can remember the vast sums of money (about £13Bbn) wasted by New Labour on its NHS National Programme for Information Technology in an abortive attempt to make NHS systems work effectively. It failed because of the multitude of separate systems (many doing the same job in a different way in different NHS trusts) in the NHS and the huge problems of even beginning to integrate them.

    Just adding a single field for “has a cervix” to a system and amending all the programs that may need to interface to it (many possibly several steps removed), without causing inadvertent problems elsewhere is massively demanding. If you add in the long term implications and complexities of all the other medical issues associated with gender self determination that something like the proposal being floated here would bring in its wake, you realise it isn’t a simple “we need to think about them” – It means the implications are huge and the cost vast and “we need to assess how the heck we could cope with multiple genders and their implications”.

    That is not trivial. It is massive. It’s easy for politicos to pass legislation making something illegal. Changing decades worth of IT infrastructure to comply is a bit more difficult.

    So on balance (a good Liberal word) I am with John and David on this.

  • Completely agree with you, Mary, but there’s a difference between thinking and doing.

    It could have been done between 2010-15 when Baroness Featherstone was still in the Commons and held the Equalities portfolio. But as I said, thinking is preoccupied with other things in the NHS these days.

  • Sue Sutherland 21st Jan '21 - 5:33pm

    Elle and Greg, as I’m sure you know, there is a huge disconnect on this subject between people of different generations but it is an issue of growing importance to many families. Please carry on campaigning.

  • Denis Mollison 22nd Jan '21 - 8:30am

    Surely there’s a basic liberal principle that connects us across our different generations.

    Everyone should get the screening appropriate to their medical needs: so a trans woman should be offered prostate screening, a trans man cervix. In a well set-up computer system, their GP could do this very easily. If – as I fear – David Evans is right and our NHS computer system can’t cope with this, we need a fix until it can. I agree with other commenters that it’s not the highest priority in the middle of a pandemic, but it should be firmly on the NHS’s to-do list.

    Good luck with the campaigning.

  • ths does rather suggest that “sex” would be a far more useful marker than “gender” for some medical purposes, and particularly mass screening programmes.
    Whether we have a cervix or not is determined by our sex, not our gender, and there are plenty of other organs of which that’s true.
    That’s likely to be a massive problem for relevant legacy systems that are complex (such as the NHS computer system), but perhaps new systems should, wherever this might be relevant, design in separate markers for Sex and Gender.
    And of course they should recognise, for each of these markers, more than one option; after all, to take this particular example, anyone who is intersex ought to be flagged up by default for screening of diseases affecting both male and female organs.

  • You would think that in this day and age it would be easy enough to ensure that there are relevant boxes for checking in every patient file that could take account of these things. I don’t think it would be that difficult to do – or at least it wouldn’t if the NHS had a half-way decent IT system. And this is where ideology meets reality.

    Whatever the case, there should be a way of ensuring that trans men and women get the relevant letters when the time comes, even if it requires a workaround, but lets be careful we don’t treat trans men and women like children either.

    I am naturally very short-sighted, so about 15 years ago I had my eyes lasered and now I’m just a little bit short-sighted. I had it explained to me that as a very short-sighted person I was at increased risk of a detached retina, and this would not change following my surgery, and it formed part of the package of information I signed off on. I don’t think it’s unreasonable to require those who are supporting people who transition, and for those transitioning themselves, to take some time to ensure there is proper understanding of the relevant medical screening and so on.

    I know it can be tough for some, and more complex than a post on LDV allows, but if a trans person struggles to discuss their former gender with their GP, then I think they need help with that first. Without that there will still be hurdles to attending the relevant screening, regardless of the efficiency of the invite system.

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