Sexual Orientation Monitoring: If we’re not counted, we don’t count!

Publish Date: 04/10/2017

Paul Martin OBE, Chief Executive of LGBT Foundation, shares his views on the significance of NHS Digital's new sexual orientation Information Standard published today. 

As of 5th October 2017, NHS Digital has published a new Information Standard for sexual orientation monitoring which aims to better meet the health and social care needs of lesbian, gay and bisexual (LGB) people through improved data collection. It provides the mechanism for recording the sexual orientation of all patients and service users aged 16 years and over across all health services and Local Authority social care providers in England.

Getting to this stage has taken years of lobbying, hard work and persistence, coupled with some brilliant co-production with many organisations and individuals. Back in 2010, as part of the Department of Health funded Voluntary Sector Health & Wellbeing Alliance, we started the process of introducing the idea of sexual orientation monitoring by persuading people across the Department of Health and the broader NHS that monitoring was important. At the same time we realised that if we were going to make this happen, we would need some senior allies who could push forward the case for sexual orientation monitoring inside the health and social care system. We put together a Task and Finish Group because we thought the process would take 6 months or a year at the very most.

That obviously didn’t happen! We underestimated the time required to make a system as complex as the NHS change in the way we needed it to and especially when it was undergoing some pretty fundamental changes itself.  It’s now 2017, and we’re only just about to go live but thankfully the Task and Finish Group continued to meet over the years, growing in both size and momentum and never faltering in its commitment. Membership of the group included not only the system sponsors but also partners such as NHS Digital, colleagues from NHS Trusts, Association of LGBT Doctors and Dentists, British Medical Association, UNISON, Health Education England, NHS Employers, Local Government Association, Royal College of Nursing and Government Equalities Office. Slowly but surely we built up a group of supportive peers, all with the shared end goal of introducing a sexual orientation monitoring Information Standard.

We continued to push and apply pressure on the Department of Health, NHS England and Public Health England, until eventually a couple of years ago we were able to bid to apply for an Information Standard. Even the process of applying to bid was a new and challenging experience for us. To be successful we had to hit the ground running and to learn how to create an Information Standard. Thankfully the bidding process coincided with some research the EHRC had done around the best way to ask sexual orientation monitoring questions, and so this formed the basis for the evidence of our submission.

Throughout the journey, we’ve encountered more structural challenges than we ever imagined - from changes in Government and Ministers (and therefore changing priorities) to a lack of resources and investment to a need to persuade already busy people that this was something that they should be paying attention to. At worst we had to deal with seemingly insurmountable obstacles for which we were unable to identify even the correct person to talk to or a workable solution. At best it was a true partnership of co-production, where different parts of the alliance we formed were working well and all pulling in the same direction. The relentless optimism and belief in the importance of sexual orientation monitoring as a mechanism for reducing the invisibility of evidence for LGB people’s needs pushed the Task & Finish Group through and used collective creativity and problem solving to find alternative and ultimately successful routes.

As a charity, we aren’t bound by the same restrictions as those working in the public sector, and so when things were moving slowly we were in the unique position of being able to articulate our frustrations at roadblocks and the slow pace by really pushing back and lobbying those responsible. We also had on our side a unique band of talented and committed public sector colleagues who continually identified solutions, kept up internal momentum and really pulled through at key points to ensure that in the end, we reached the finish line.

It was only with a massive amount of tenacity and patience, along with the commitment and energy of a number of brilliant people coming together that has allowed us to achieve our shared goal.

So why did we bother putting in over 6 years of relentless hard work, often with frustratingly slow processes and a number of pushbacks in order to make sexual orientation monitoring happen? To put it simply, if we’re not counted we don’t count!

We already know that that LGB people are disproportionately affected by a range of health inequalities and experience significant barriers to accessing health and care services. Research by LGBT Foundation has shown that:

·        Just 8% of LGB people in Greater Manchester report they have never experienced a mental health problem.

·        LGB people are twice as likely as the general population to commit suicide.

·        It’s estimated that 1 in 11 gay and bisexual men in Manchester are living with HIV, approximately 14% of whom will be undiagnosed.

·        LGB people are seven times more likely to use drugs, twice as likely to binge drink, and show higher levels of substance dependency compared to their heterosexual peers.

It’s just not good enough that these health inequalities are far too often overlooked or ignored and that people accessing services aren’t given the right support as their health care professionals are unaware of their service users’ sexual orientation. It’s not good enough that we’re still lacking a substantial evidence base around the inequalities and needs that LGB people face. It’s not good enough that LGB people still feel that their needs are being ignored when accessing services.

Sexual orientation monitoring isn’t going to fix all of this overnight, but it’s certainly a huge step in the right direction. We are a relatively small charity and with the support of allies we’ve made along the way have fought to change the system and as a result we’re now a step closer to real change for LGB people and this brings us an immense sense of pride. 

Of course next on our agenda is Trans Status Monitoring…..

Paul Martin OBE – Chief Executive, LGBT Foundation& Chair, National LGBT Partnership

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