Lived Experience Research at Healthwatch Essex: A Service User’s Perspective.

In this blog, Dr Ben Gray (a Research Ambassador and Service User Researcher at Healthwatch Essex) describes his lived experience of schizophrenia and Asperger’s syndrome and outlines its relevance to qualitative research in health and social care.

Life at the Margins: Hearing Voices, Social Exclusion and Stigma.

Having a mental health problem and learning disability can be difficult, threatening and even terrifying. Hearing voices often leads to stigma and exclusion from others and in health and social care. One person I knew in hospital saw people covered in snakes, while another saw people on fire. I myself have heard threatening and taunting voices, with a hellish and demonic quality, saying: “You wait until you see what I’m going to do to you!” and “Hot fire in your eyes!”. The exclusionary impact of this is not helped when seeing things and hearing voices are labelled as hallucinations and delusions, instead of horrible experiences that are real to the person experiencing them. Too often, people who see things and hear voices can withdraw into themselves and be cut off from society, living life on the margins and being stigmatised by others. These people can become passive, docile, a shell, almost zombie-like and feel that they do not matter and are not valued.

Using Lived Experience in Research: New Directions in Qualitative Research and Co- Production.

While the equality and diversity agenda has grown in the past few decades, it has only recently been taken up by research organisations in health and social care. The Department of Health and Social Care and leading organisations such as Healthwatch Essex now extoll the benefits of Patient and Public Involvement (PPI). They assert that people should not just be viewed as subjects, but as full participants in all stages of research: participating in research design, data collection, analysis and writing up findings. There has, consequently, been a swing towards a social justice agenda with a concurrent democratisation in knowledge and research. This means that research is not a monologue about marginalised groups but a dialogue with participants, placing them at the heart of investigations. Healthwatch Essex and other leading organisations have taken a ‘phenomenological’ and qualitative approach, which is to say that they focus on human participants, their experiences and sense making activities. Research of this kind is particularly good at capturing the immediacy and depth of people’s experiences, perspectives, opinions and emotions. The growth in lived experience research and Co-Production, based in valuing and engaging people’s lived experience in all stages of research, turns the negative experience of stigma and exclusion into a more positive experience of inclusion, fuller engagement with others and feelings of being valued and accepted.

A Lived Experience Advisory Panel (LEAP).

One of the most rewarding and successful of the many research projects that I have worked on is as a coordinator of a Lived Experience Advisory Panel (LEAP) at Rethink Mental Illness. This panel was comprised of service users and carers of people with mental health problems. The Primrose project, of which the LEAP was a part, studied the best way to treat people at risk of heart problems who had mental illness. The project won an award from the Mental Health Research Network (MHRN) for its involvement of people with mental health problems and carers. One recommendation of the LEAP involved the promotion of healthy behaviour change such as improving diet, stopping smoking, increasing exercise, buddying and peer support. The Primrose project had previously been criticised as being overly medical, wanting people to take tablets (statins). However, we found that this might not be desirable for people who were already taking antipsychotic and antidepressant drugs.

The LEAP involved conversations on important, sensitive and challenging topics of people’s lived experience with difficult emotions and disclosures. One carer described how she found her son trying to cut his throat, while another talked about helping her daughter with a drug addiction. The LEAP was both intellectually engaging and emotionally rewarding. In the words of two of its members:

“I felt very involved and included as a member of the LEAP. I felt my views and everyone’s was valued. The group worked well together and were very supportive, not being afraid to give their views. (It was) a very good example of Co-Production. I could bring my lived experience of taking medication that affected my weight. I could share how I struggled to tackle this, especially the effect that medication had on me” (Jackie).

“I had high cholesterol and was trying to avoid statins. I thought I had something to offer the team. We were encouraged to express our feelings, doubts and fears. (We discussed) discrimination, being patronised or diagnostic overshadowing. We agreed that a gentle approach with a healthcare professional at the (GP) surgery might work well, tackling the issues (one at a time) like smoking, dieting and exercise” (Susie).

The importance of lived experience research is exemplified and underscored by these extracts and highlights the benefits that lived experience can bring to qualitative research. I believe that Lived experience and Co-Production should be at the heart of all contemporary qualitative research projects.

For more information on the LEAP project, see: Osborn D, Burton A, Walters K, Atkins L, Barnes T, Blackburn R, et al. (2019) ‘Primary care management of cardiovascular risk for people with severe mental illnesses: the Primrose research programme including cluster RCT’, Programme Grants for Applied Research 7(2), pp. 1-98.

Dr Ben Gray (Research Ambassador and Service User Researcher, Healthwatch Essex).