blog

This is a story in three parts, from clinical experience to research and finally to lived experience participation. I shall describe three types of public engagement and how one has led to another.

Clinical work with patients of necessity engages with them, though there is immense variation in how empowered (or not) a patient may feel. A clinician can do much to put their patient (and families if they are present too) at ease, explain what may be expected and give time and encouragement for the patient to develop their own view and express their own wishes. Part of gaining clinical experience is to become more confident at nurturing this space in clinical encounters. Every patient needs a nuanced approach to information sharing and negotiation about care and treatment. These skills undergo constant refinement throughout one’s career and provide a great deal of job satisfaction.

As well as individual patient contacts, patients and families become involved in service developments of various kinds. Some of these happened to me in my early career as a consultant; for example, consultation with patients and families about moving wards from one site to another or about closure of long-stay hospital beds for dementia. I can also claim that one of my earliest publications was about the role of carers in evaluating mental health services for older people (Dening & Lawton, 1998), so there is evidence that I have thought about these things for many years.

Moving to an academic appointment at the Institute of Mental Health in 2012 brought many new challenges. One issue that has continued to grow in importance over this time is public and patient involvement and engagement in research, though initially it was just PPI, the engagement came along later. I remember when the Alzheimer’s Society began awarding research grants in about 2000, they were revolutionary in setting up panels with members of the public to review research applications. This is of course commonplace now and we would be surprised if it didn’t happen.

Obviously, I think PPIE is great. Our dementia PPIE group meets monthly and researchers book slots to discuss research ideas, projects in progress and as part of dissemination. Over time, there have been challenges to keep the group supported and running, mainly about resources and availability of people, though COVID-19 didn’t help either. Increasingly, people with lived experience are involved in more than just advice, e.g. as co-applicants or co-researchers. There is sometimes a concern that experienced PPIE colleagues may become too research-savvy or somehow lose their authenticity as representatives of the topic in question, but actually it is important that they do know something about the research environment. Such issues as how grants are applied for and the constraints under which researchers work need to be understood.

Part 3 of this piece is my own experience of lived experience. I have moderate hearing loss and about two years ago started to wear hearing aids. I have found them immensely helpful as without I would struggle to hear people well enough at work to be able to do my job. I didn’t want to be asking others to repeat themselves all the time. I have become somewhat evangelical about people getting hearing assessments and hearing aids if they need them and I have embraced any opportunity to write about my experiences in the hope that this will provoke thought and discussion and reduce the stigma of hearing loss. I have produced several blogs (see below) and this is another! I have joined research panels and contributed as a person with lived experience to research projects.

However, what I wanted to dwell on in this blog was not specifically about hearing loss, but more about the liberating feeling that came with becoming a small part of public involvement. There is something gratifying when you realise that through your condition you have something that researchers and clinicians need. You can reflect on the experiences that you have had as a result of said condition and being able to contribute in a serious way to a bigger effort to improve care and treatment of the condition is heart-warming. I admit to be slightly surprised about the power of these effects. It also helps me to understand what drives our PPIE colleagues to be involved and what they get from it. The main thing I think that you need in a lived experience role is to be treated with respect – but I am new to this situation and doubtless others may prioritise other aspects. Whatever, I feel privileged to hold clinical, researcher and lived experiences perspectives at the same time.

Reference/further reading

Dening TR, Lawton CA. The role of carers in evaluating mental health services for older people. International Journal of Geriatric Psychiatry 1998; 13: 863-870.

Blogs:

Tom Dening: Hearing aids and cognitive impairment – Challenging Stigma and Promoting Personhood

Hearing aids and beyond... - Hearing Matters

Roger and out? Further reflections on wireless microphones - Hearing Matters

The humble hearing aid versus Giant Dementia - Hearing Matters