4.Most of the time, outside of very specialist provision, LGBT people use health and social care services much like non-LGBT people do. They access GPs and other primary care providers, are referred to consultants, present at A&E when there is an emergency and apply for care home places. There are two ways in which it is possible to gauge whether these services are working effectively for LGBT people: data collected about the LGBT people’s health outcomes and how LGBT people themselves feel about the service they are receiving. This Chapter focuses on the first of these: the data collected through clinical studies, surveys and administrative data - data collected during the course of an individual’s treatment.
5.While there has been a fair amount of academic research into health inequalities of LGBT people, especially in the fields of sexual health and among gay cisgender men, there has been little in the way of large-scale data collection and it is rare for data to be collected at a local level.2 Many submissions to the inquiry have highlighted a lack of data (and data collection) as a cause of concern.3 Health and Social Care services are unable to understand the needs of their LGBT populations if they are not collecting data about them. LGBT needs are not routinely included in Joint Strategic Needs Assessments, public health strategies or other commissioning documents, in part, due to the lack of available data about LGBT health outcomes.4
6.It is only possible to take account of the needs of any group if policy-makers are aware of the existence of the group and of their needs. As Dr Justin Varney from Birmingham City Council told us, “If you are not counted, you don’t count”.5 Many of the problems that we heard about throughout the inquiry could be traced back to lack of data-collection being undertaken across the NHS and social care services. As part of the NHS Long Term Plan, Integrated Care Systems (ICSs) and Sustainability and Transformation Partnerships (STPs) will need to show how they are reducing inequalities.6 Secretary of State for Health and Social Care, Matthew Hancock told us that:
Local health systems will be required to take action and report on that through a series of equality impact assessments.7
In addition to this, Clinical Commissioning Groups, who have to bid for funding, can make a case for “unmet need and health inequalities” which would make them eligible for funding on top of their standard funding from NHS England.8 This means that it is absolutely vital for all health and social care bodies to know how many LGBT people are using their services, how they are using them and what the unmet need might be.
7.Very few front-line services are collecting information about the sexual orientation and gender identity of their patients as part of registration. The Office for National Statistics conducted an audit of public datasets and found that, of 108 health datasets, only 23 included sexual orientation monitoring in datasets in England. Only four datasets included gender identity, and three of these were surveys specifically aimed at LGBT people.9 This lack of quantitative data is also reflected at a local level, with witnesses telling us that local services rarely collect this information. Prof Kathryn Almack of the University of Hertfordshire described the problem in care homes:
If we have an estimate that—we do not know, but let us say—6% of the population are LGBT, there are going to be LGBT people in care homes, yet they seem on the whole to be invisible. I go into care homes and they say, “We do not have any people like that here”.10
8.Lack of consistent data collection causes a dual problem. The first is that individuals may not have their needs as LGBT people taken into account when they should be. The second is that service commissioners are unable to plan for the needs of their LGBT population. The Government has acknowledged this issue within the LGBT Action Plan stating that:
The Government Equalities Office will develop best practice guidance for monitoring and make this openly available to the public sector, and the National Advisor will work to ensure healthcare professionals understand the benefits of asking patients about their sexual orientation and gender identity. The Care Quality Commission will look at how we can promote the NHS England voluntary sexual orientation monitoring standard for people using health and social care services.11
This commitment has come after NHS England published a new Sexual Orientation Monitoring Information Standard (SOM) in 201712 and stated that it was voluntary to use by any health provider who wished to. NHS England had already begun encouraging take-up of the SOM by health and social care providers before the LGBT Action Plan was published.13
9.We found it strange that the new SOM had been developed by NHS England but its use was not being mandated. Brighton and Sussex Medical School suggested to us that the reason for the collection being optional was due to the discomfort that health and social care professionals felt in asking the questions. Brighton and Sussex Medical School’s submission states that:
Our research strongly suggests additional support is necessary to support health service staff on administering monitoring, and to support patients’ confidence to disclose this stigmatised information.14
Their research also found that the discomfort was one-sided, in that that LGBT (and non-LGBT) people were willing to disclose their sexual orientation but the health staff worried that they would object, so worried about asking the relevant question. The submission states that:
Staff discomfort with explaining sexual orientation questions almost exactly mirrored their assumption of patient discomfort with answering such questions, suggesting that staff may be projecting their anxieties about monitoring onto patients.15
10.When we asked witnesses about whether SOM should be mandatory, they not only told us it should be16 but that they considered there to be a double standard at play. Dr Justin Varney told the Committee how ethnicity monitoring was rolled out in the NHS, saying:
When the NHS introduced ethnicity monitoring across the system, that was introduced with a mandation element, so if you did not achieve, I think, a 90% threshold of compliance, as a provider you were not paid. There was a financial penalty. Because of that, we know a huge amount, but we have also been able to systematically drive improvements in services for people from ethnic minorities.17
11.However, when we asked Dr Michael Brady, the National LGBT Health Advisor for the Government about the possibility of making monitoring compulsory, he was non-committal, saying:
Do we need to mandate it? I am not sure that I would say yes at this stage. What I would say is that my first approach to this is to let me understand where it is happening and how it is happening. From my initial discussions around this, it really seems that those places that have implemented it have implemented it on the basis of existing knowledge about health inequalities. That is why, for example, cancer services or mental health services are doing it perhaps more than other settings.18
12.Services that already monitor sexual orientation are clearly aware of the health disparities that are uncovered through data collection. If sexual orientation monitoring remains optional, health disparities will remain hidden across the services that choose not to implement it. In line with ethnicity monitoring, sexual orientation monitoring should be made mandatory across all NHS and state social care providers within the next 12 months. Any service provider who does not implement it should face fines at a level equivalent to those imposed for not monitoring ethnicity.
13.Development of monitoring of gender identity is far less advanced than that of sexual orientation. NHS England has not yet agreed a standard, although Dr Brady told us in July 2019 that it would be a priority for him to drive this forward in the next six to twelve months. He told us that he believed that, within five years there would be:
… across-the-board monitoring for sexual orientation and gender identity or trans status that is acceptable to those to whom the question is being asked and useful to those who need that data to inform their system plans or their service delivery.19
14.This seems optimistic, given what others have told us about existing monitoring. For instance, we were told by Dr Duncan Shrewsbury that it is currently impossible to list a patient’s gender identity as a characteristic as opposed to a health problem in GPs’ computer systems:
It is absolutely right to capture that data, but at the moment there is not a practical way of using it, because within the systems that we use to capture that data, it is coded as a problem—as part of the list of diseases that somebody may or may not have. It is not included—there is no physical space in the fields to record it as part of gender, address, date of birth or something as core as that.20
When we asked the Secretary of State about timescales for rolling out monitoring, he was unable to give us a firm commitment beyond the general target of completing all the actions in the LGBT Action Plan “in this Parliament”.21
15.Monitoring both sexual orientation and gender identity is far too important to be an aspiration rather than a concrete goal with clear timelines for delivery. The NHS needs to understand where the disparities are in order to formulate strategies to tackle them. This is especially true for the transgender population, where the LGBT Survey found that some of the greatest health disparities exist.
16.Gender Identity monitoring work should be accelerated with a view to creating a standard by the end of 2019. This should then be rolled out on a mandatory basis to all NHS and state social care providers before the end of 2020.
17.Despite a lack of consistent data collection, some disparities in health outcomes in the LGBT community are well-known and are reflected in health policy, such as higher rates of smoking22 and alcohol consumption.23 But other disparities receive less attention from policy-makers, such as research that shows that gay and bisexual men are more than twice as likely to report having anal cancer and bisexual women are more than twice as likely to have cervical cancer24 Part of the reason these disparities are not widely discussed is because research on health and social care outcomes for LGBT people has been slow in developing outside of ‘traditional’ areas such as sexual health. Nonetheless, many of our submissions explored other disparities, including:
The rest of this report explores some of the reasons why health disparities persist that what can be done to tackle them.
3 Action on Smoking and Health (ASH) (HSC0058), Birmingham LGBT (HSC0039), Brighton & Sussex Medical School, University of Sussex (HSC0027), Dr JOANNA SEMLYEN (HSC0046), Dr Justin Varney (HSC0013), Dr Sue Westwood (HSC0002), Equality and Human Rights Commission (HSC0055), FPA (HSC0061), LGBT Foundation (HSC0035), London Friend (HSC0032), Macmillan Cancer Support (HSC0057), Opening Doors London (HSC0025), Professor Catherine Meads (HSC0014), Professor Kathryn Almack (HSC0051), Stonewall (HSC0048), Stonewall Housing (HSC0021), The National LGB&T Partnership (HSC0033), Trades Union Congress (HSC0020)
6 NHS England, NHS Long Term Plan Implementation Framework (June 2019),p 5
8 NHS England, Equality and Health Inequalities Analysis (January 2019), p 6
9Office for National Statistics, ‘Equalities Data Audit’, accessed 19 September 2019
11 Government Equalities Office, LGBT Action Plan (July 2018), p 10
12 NHS England, ‘Sexual Orientation Monitoring Standard’, accessed 19 September 2019
13 NHS England, Sexual Orientation Monitoring: Full Specification (October 2017)
15 British Journal of General Practice, February 2019
21 Government Equalities Office, LGBT Action Plan (July 2018), p 5
Published: 22 October 2019