Between 2013 and 2018, SAND undertook 3 research projects, each building on what went before and all reflecting national research findings such as: University of Nottingham The Last Outing 2013-2016, Stonewall 2015 and the Government Equalities Office Research 2018.
Research Project 1: Research and Progress – a review of resources and materials, 2013
funded by Severnside Housing
After some pilot research in a care home regarding staff knowledge, lengthy discussions with the SAND Action Group, and a review of currently available literature, ten key themes were identified which impact on older and old LGBT+ people accessing health & social care in Shropshire.
- LGBT people may be afraid to come out as they are unsure about the response they will get. Organisations then say ‘there are no gay people here’ so it isn’t an issue
- Coming out isn’t a one-off – it’s constant and can be very wearing
- Growing up in homophobic families, workplaces, environments has an impact on LGBT people’s mental health and how they manage situations
- Being part of a group that is, in many parts of our society and many parts of the world, ‘not normal’ has an impact on how LGBT people see themselves and each other
- Treating everyone ‘the same’ means that LGBT people’s life experiences are unlikely to be considered
- It’s not always about being actively ‘excluded’, but more about not being ‘included’
- Isolation can be a serious issue amongst older LGBT people and although not exclusive to them, they may have/feel they have less choice in accessing support networks
- LGBT people don’t necessarily know how to access information and support – if they don’t see themselves
represented on leaflets, posters etc. they are likely to feel excluded
- Being LGBT isn’t all people are but, it can be a part of their identity that gets left out in order to survive in the world
- The concept of ‘family’ may be very different for LGBT people
These highlighted SAND’s first fundamental challenge: “to get across to carers and care organisations that there is something to ‘get’. The review included a quick look at any appropriate training available to care staff and found:
- no suitable web-based training
- nothing provided by the Chartered Institute of Housing or Social Care Institute for Excellence
- no knowledge of any appropriate training amongst local managers of domiciliary care
Research Project 2: Researching the hopes, fears, experiences, expectations of health & social care by older – and old ‐ lesbian, gay, bisexual and trans people in Shropshire, 2015
funded by Healthwatch Shropshire
Following on from Research Project 1, SAND wanted evidence and some local stories – from a rural Shropshire context ‐ to take to health and social care providers in the hope that these will provoke an interest and willingness to engage. The thinking was that, once that has been achieved dialogue could begin about the things that LGBT people identify need to happen in order to affect positive change.
SAND wanted to know how the experiences and lives of LGBT people impact on the issues they may face around health and social care, now and in the future. The summarised findings below come from a series of 24 in-depth interviews.
- Older and old Lesbian, Gay, Bisexual and Trans people in Shropshire are at risk of marginalisation and isolation. Their story is similar to that of LGBT people all over the country and Shropshire has a potential head start in making improvements and being a beacon of good practice if health and social care providers take notice.
- Past societal experiences of illegality, abuse, brutality, ridicule and intimidation mean that an older generation of LGBT people has adopted sophisticated ‘risk assessment’ processes to gauge personal and emotional safety. These same processes keep them hidden from health and social care providers.
- This invisibility means that the issues commonly facing older and old LGBT people are not addressed; individuals are not receiving an equal service to their heterosexual, non‐trans counterparts and their life experiences are not considered.
- LGBT people have recorded difficult and variable relationships with their blood families – often the ones on whom reliance is built for care provision or information about an individual in later life. People have lost friends and family through disapproval or condemnation, or they may have families – or parts of families ‐ in complete ignorance of their lives.
- LGBT people are fearful of being ‘outed’ or made vulnerable in situations where they feel trapped. This can occur through speech or actions of self, partner, friends, staff, other patients/residents. Denial of sexuality is a denial of identity – a serious contravention of human rights and damaging to health and wellbeing. There is no evidence to suggest that health and social care providers recognise or take seriously the impact of this denial (by self or others), nor that they understand the hidden nature of sexuality.
- Trans issues readily get subsumed into those impacting on lesbian, gay and bisexual people and yet there are distinct social, medical, psychological and physical implications of transition. These issues are not well researched.
- Many people find a lot of these issues difficult to talk about and so choose to bury their heads in the sand and hope they go away. As one research participant said ‘just because you can’t see us, doesn’t mean we are not here’.
- Health and social care environments are a frightening prospect for older and old LGBT people who have learned experience of discrimination, negative experiences of authority, learned deception, secret/forbidden lives, been told to keep themselves to themselves, been witness to public denouncements of ‘their kind’ and denied their identity.
- Doing this research has made the researchers and participants appreciate that it is absolutely critical that people in positions to make decisions and act in ways which impact on people’s lives understand the reasons why it is important that they know about those lives.
- Any progress needs health and social care providers, commissioners, other relevant organisations and sectors to build on the momentum created by this research and SAND’s advances to engage with change. Shropshire CCG, Shropshire Partners in Care , Shropshire Council (incl Public Health), Shropshire Voluntary & Community Sector Assembly, Royal Shrewsbury Hospitals NHS Trust, Shropshire Community Health NHS Trust, South Staffordshire & Shropshire Healthcare NHS Foundation Trust, Staffordshire and Stoke‐on‐Trent Partnership Trust, the care home sector, Shropshire Solicitors for the Elderly Network, Severnside Housing, South Shropshire Housing Association, Stonham Housing Association, Bromford Housing, Sustain and the legal sector need to engage with SAND and commit to:
- increase confidence and capacity of older and old LGBT people in Shropshire to engage in a process of change
- invest in further research in Shropshire to explore care pathways of older and old LGBT people; trans experiences; barriers to accessing legal services and housing options
- equip staff with the skills and knowledge and structure their organisations to create safe environments for older and old LGBT people
- develop a kite‐mark, Champions scheme, or similar way of publicising those services with raised levels of awareness about issues impacting on older and old LGBT people in Shropshire
Research Project 3: Exploring the reality: How do the various health and social care agencies provide services appropriate to individuals who identify as trans? An initial exploration, 2018
funded by Healthwatch Shropshire
This research was the result of one recommendation drawn from our previous Healthwatch funded research (March 2015) into the issues facing older and old lesbian, gay, bisexual and trans people accessing health & social care services in Shropshire. We wanted to explore the levels of understanding about specific issues facing trans people.
Findings suggest that there is some way to go to make the experience of trans people accessing health and social care equitable to the cis-gender (not trans-gender) population with specific focus needed on: actual transition; health conditions associated with transition and historic poor experiences which lead people to wait longer before accessing services they need.
This is a complex area of research and our starting point was far too ambitious. We quickly discovered that service providers are rarely able to disaggregate specific experiences of trans people from those more broadly being flagged up for LGB people – and that they are keen to increase their knowledge in this broader area.
The conflation of trans issues with those of lesbian, gay and/or bisexual people reportedly leaves this marginalised group more vulnerable, and yet this research finds that the benefit of conflation is that trans experiences are included in conversations, and this outweighs the dangers of further marginalisation by starting the discussions with a focus on more generic LGB issues.
Our methodology changed as we became more understanding of where people were starting from in these conversations, and also as we became aware of other research in progress. In favour of individual meetings with service providers, we delivered facilitated awareness raising sessions with an introduction about the research process and opportunities to raise questions. We also waited for the outcomes of a bigger piece of research which coincidentally had begun at Swansea University (this had not been concluded by the time this report was completed).
All of this serves to illustrate the complexity of or challenge to doing this research. Our findings suggest that there is some way to go to make the experience of trans people accessing health and social care equitable to that of the cis-gender population and, with growing numbers of young people presenting as gender non-binary or gender questioning, this is an area for some urgent focus – on different fronts: around actual transition; around health conditions associated with having transitioned; around historic poor experiences which lead people to wait longer before accessing the services they need around approaches adopted by service providers.
Having said this, there is a case to be made for all of this fitting well into health and social care values of privacy, dignity, personalised care, adult safeguarding, compassion and good communication. This last cannot be over-stated and SAND recognises our own need to continue conversations and develop relationships in the County. This is about laying the foundations before introducing some of the bigger, more specific challenges to policy and practice when considering the main focus of our own trans work: older and old trans people accessing health & social care, such as research into the impact of taking gender changing hormones for decades, gender surgery and any particular implications of dementia.