Intrusion or inclusion? Helping or hindering LGBT equality?

08 February 2018

As a new sexual orientation monitoring standard is published, journalist Anna Scott asks if gathering this data is overreaching, or an important step in promoting LGBT equality in healthcare outcomes.

'Tailored, more inclusive approaches to recovery are critical, and a civil and human right.’ These are the words of a gay man who attended an NHS rehab programme for alcoholism in which he felt the service did not meet his needs in considering the links between his addiction and sexuality (Prest, 2017).

This is the kind of situation in which the confidential monitoring of patients’ sexual orientation could lead to patients and service users who are lesbian, gay, bisexual or transgender (LGBT) receiving better, more bespoke services from the NHS, and one of the reasons that NHS England and NHS Digital have published a new standard to improve the recording of sexual orientation data. 

The Sexual Orientation Monitoring Information Standard aims to provide a consistent approach for recording data of all patients and service users over the age of 16 across England (NHS England, 2017).

It will also cover local authorities with responsibilities for adult social care in all service areas where it may be relevant to record this data in a standardised way, and it can be used more widely by local authorities (NHS England, 2017). 

‘All bodies are required under the Equality Act 2010 to ensure that no patient is discriminated against,’ an NHS England spokesperson says. ‘This information standard is designed to help NHS bodies be compliant with the law by consistently collecting, only where relevant, personal details of patients such as race, sex and sexual orientation. They do not have to do it in every area, people do not have to answer the questions and it will have no impact on the care they receive’ (see panel, right).

Monitoring this data will enable health and social organisations to demonstrate that they provide equal access to services for LGBT individuals and contribute to the improvement of care providers’ understanding of inequalities in health and care outcomes for different populations (LGBT Foundation, 2017).

The standard recommends that ‘sexual orientation monitoring occurs at every face-to-face contact with the patient, where no record of this data already exists.’ It continues: ‘Demographic data will be periodically reviewed by the organisation collecting it [and] entries will need to be verified with the patient (similar to periodic reviews of data such as address)’ (NHS England, 2017).

If the patient does not want to disclose their sexual orientation, this response will become part of the record, as it is with ethnicity data recording (NHS England, 2017). 

The LGBT Foundation recommends that service users’ sexual orientation is monitored at the point of registration or service delivery, service user engagement, evaluating satisfaction or logging complaints.

‘It’s important to find the right time to monitor and to monitor on several occasions: someone may not disclose at first but may feel comfortable enough to do so later on; and an individual’s sexual orientation can change over time,’ its Good practice guide to monitoring sexual orientation states (LGBT Foundation, 2017).

‘A service user might not disclose when registering for a service, but later appreciates this could be useful information for service planning and provision.’ 

Open to question?

The standard sets out the format for the questions for healthcare professionals to ask patients, where relevant: 

Sexual orientation: Which of the following options best describes how you think of yourself? 

1. Heterosexual or straight 

2. Gay or lesbian 

3. Bisexual 

4. Other sexual orientation not listed 

Person asked and does not know or is not sure 

Not stated (person asked but declined to provide a response) 

9. Not known (not recorded).
NHS England, 2017

Setting the standard

Twelve sites were chosen across England to pilot the standard, focusing on four key areas: leadership, IT systems, workforce training and development and communication with patients. They have been tasked with working out the best way to implement the standard, making sure that the question is asked in an appropriate way and in a relevant context, so that the NHS has the information to improve care and help reduce health inequalities, according to NHS England.

One pilot site – Oxleas NHS Foundation Trust, which provides health and social care services in south London and Kent – launched a communication campaign for service users.

The trust had already increased its monitoring of sexual orientation in service users over the past few years, and has subsequently been encouraging people using their services to tell relevant staff about their sexual orientation (LGBT Foundation, 2017).

It produced a leaflet for all patients and aimed at LGBT people and their carers, outlining what to expect when accessing Oxleas’ services, including a discussion of ‘why should I tell my health professional I’m gay?’ (LGBT Foundation, 2017).

A number of ways of implementing the information standard are suggested, based on what organisations already monitoring the information have done, including taking a phased approach (see panel overleaf). ‘In this way, the costs of implementation [have been] absorbed into other costs and have not brought any additional financial burden,’ the standard guidance reads (NHS England, 2017).


In practice

In a commonly given example, when a patient registers with a GP and answers questions about their age, gender and ethnicity, there would also be a question about sexual orientation. The decision to answer the question would lie with the patient and the information recorded would be confidential.

‘It means you can build up meaningful data, which then allows you to get a snapshot,’ says John Walding, marketing, campaigns and communications manager at
the LGBT Foundation, which developed the standard with NHS Digital on behalf of NHS England.

‘The more information we have, depending on where it’s relevant, the more we would be able to inform decisions on the best forms of support that could be given to those particular patients. Having that knowledge completes the picture and means that the services that are offered are much more geared towards providing the best support possible. That’s the rationale behind [the standard],’ he adds.


Implications for practitioners

But what about health visitors, community nursery nurses and school nurses dealing with clients who are often under the age of 16, to whom the standard doesn’t apply?

The standard will have a ‘positive’ impact on the work of community practitioners, says one health visitor. ‘It enables public health nurses (school nursing) and Healthy Child Programme nurses to meet the holistic needs of a child or young person,’ says Louise Lester, public health nurse at Leicestershire Partnership NHS Trust.

‘It enables us to use terminology in a manner that respects the needs of the child or young person and which makes them feel comfortable and accepted, thus maximising the positive outcomes of our interventions for the child or young person that we are providing an intervention for,’ she adds.

Currently, school nurses operating within Leicestershire Partnership NHS Trust address sexual orientation with age-appropriate children and young people as part of their full and holistic baseline health assessments, Louise says.

The child or young person is reassured that any contact with the nurse is confidential and ‘safe’, and they are free to talk about any of their needs or problems, or just to share any information that they choose regarding sexual orientation or gender. 

‘We are professionals who are skilled at asking questions that enable the young person to share information at a pace that is comfortable for them,’ Louise says. ‘Quite often we are the first adults or professionals that a child or young person has shared their sexual orientation with.’

Need to know: sexual data handling  

  • Data should be collected using the same recording and reporting method for other equalities data, such as age and gender
  • Implementation should be phased in and any necessary changes to IT systems made as part of broader system updates 
  • Training costs should be incorporated into the routine costs of updating monitoring and performance systems 
  • Role-based access arrangements should be reviewed because professionals are collecting personally identifiable sensitive data 
  • Information about sexual orientation is sensitive personal data for the purposes of the Data Protection Act 1998, and therefore providers must have consent or an alternative legal basis for processing such data
  • Privacy impact assessments should be updated to take account of the sensitive data being collected
  • Organisations should review how they process this data ahead of the implementation of the General Data Protection Regulation coming into force on 25 May 2018 – the European Parliament regulation which seeks to strengthen data protection for all EU citizens – to ensure compliance
  • A ‘cross-system task and finish’ group consisting of 19 organisations including NHS trusts, local authorities and campaign organisations has been set up to support the implementation of the standard across IT systems, workforce development and communication to the health service and the wider public.

NHS England, 2017

In the home countries

But this isn’t the same for all community practitioners. Another NHS trust in England says that while it ‘routinely collects the required data’, sexual orientation seems to be ‘an area of practice that will need better strengthening across the services’.

In the devolved nations, the picture is even more complicated. ‘There are currently no plans to introduce a similar approach in Wales,’ says a spokesperson for the Welsh Government. 

Even if the government did introduce such a standard, it’s not clear how it would apply to community practitioners. ‘GPs in Wales would want to know their patients and will ask about their sexuality if it is relevant to their medical condition,’ the spokesman adds. 

It’s a similar situation in Scotland, with one health board saying its community practitioners would not ask the question of any patients. In Northern Ireland, the Public Health Agency is not involved in any standard for sexual orientation monitoring, a spokesperson says.

Developing the information standard has very much been focused on England. ‘We are unable to influence other devolved governments,’ says Mike Cullen, sexual orientation monitoring coordinator at the LGBT Foundation. ‘We would be very happy if they were to follow suit, as we believe sexual orientation monitoring is key for reducing health inequalities faced by lesbian, gay and bisexual people.’


Making a difference

Despite the English focus, there is an understanding elsewhere that greater information about sexual orientation can make a difference to the care patients receive. As long ago as 2006, a report for NHS Education Scotland noted that monitoring patients’ sexual orientation is useful, helping with the appropriate provision of services in a health board. 

‘Patients should be able to “be themselves” when they receive care from the health sector,’ it states. ‘Sometimes patients might have unique healthcare needs because of their sexual orientation, or may have particular circumstances that are affected by their sexual orientation. Or, very simply, patients might just want to be able to refer to their partner informally’ (Stonewall, 2006).

But the report also acknowledges that not all patients will understand or identify with labels given for sexual orientation. And monitoring becomes even more complex for community practitioners dealing with children aged under 16 and their parents and carers.

‘It’s not compulsory to gather sexual orientation data for any patients or their carers, but we would always encourage practitioners to do so where appropriate,’ Mike says.


Help for community practitioners

‘I feel it is vital for community practitioners to gather this information in an open and honest way,’ Louise Lester says. ‘The child or young person needs to know that the questions are asked to enable us to meet their needs so that they have the best outcomes and receive the support required.’

As a result, it’s vital that training and peer support help upskill new starters into the public health role to enable them to develop skills around asking questions, listening, reacting and understanding the terminology that must be used, Louise says.

At her trust, a care pathway is being developed to be included in its local standard operating guidance, including appropriate questions to ask, hyperlinks to relevant legislation, national and local standards and organisations, and a referral pathway to LGBT services and a young transgender specialist worker. 

‘I do not feel that it is an intrusive question – it is necessary to enable needs to be met and optimum outcomes,’ Louise says. ‘The skills of the public health nurses support this.’ 


LGBT Foundation. (2017) Good practice guide to monitoring sexual orientation. See: https://s3-eu-west-1.amazonaws.com/lgbt-media/Files/b577e0cd-041a-4b10-89b6-f0f5f3384961/LGBTF%2520SOM%2520Report.pdf (accessed 5 January 2018).

NHS England. (2017) Sexual Orientation Monitoring Information Standard. See: england.nhs.uk/about/equality/equality-hub/sexual-orientation-monitoring-information-standard/ (accessed 5 January 2018).

Prest M. (2017). Rehab is a lonely place for a gay man like me. See: theguardian.com/healthcare-network/views-from-the-nhs-frontline/2017/dec/11/rehab-lonely-place-gay-man-addiction (accessed 5 January 2018).

McNeil J, Bailey L, Ellis S, Morton J, Regan M. (2012) Scottish Trans Mental Health Study. See: https://www.scottishtrans.org/wp-content/uploads/2013/03/trans_mh_study.pdf (accessed 30 January 2018).

Stonewall. (2006) Monitoring sexual orientation in the health sector. See: http://www.resources.nes.scot.nhs.uk/lgbt/documents/7%20Good_Practice/5%20Monitoring%20guidance/Monitoring_SO_in_health06.pdf (accessed 5 January 2018).


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