Contributing to the BRC Surgical Innovation Group as a public and patient representative

In this blog post, Val Snelgrove talks about her experience of working as a public and patient representative with a team based at the Bristol BRC’s surgical and orthopaedic innovation theme, training opportunities in public involvement and a Learning for Patient and Public Voice (PPV) course she recently attended.

My main reason for taking sciences in my last two years in school was because science deals in facts, and I was seriously hopeless at creative writing! This is not looking good for writing a blog but at the age of 73 my name has now appeared on a published research paper, (something I never thought would happen), so…here goes!

The road to public engagement

When I left school my first job was in pharmaceutical research. It was also the first time I would be introduced to the high proportion of eccentric characters working in the science world. Undeterred by what would turn out to be a constant feature of every place in which I worked, I pursued a career at the Queen Square Institute of Neurology in London, The School of Psychology at Cardiff University and several others.

Once retired I knew that I needed to find something that would enable me to meet people and feel part of a group. I decided to become a volunteer at Southmead Hospital. The roles I held there were varied and made me feel not only that I was part of the hospital but also that I was really making a difference to patients.

Surgical innovation research and the ALPACA study

I first became part of the BRC Surgical Innovation Group in 2021. This is an ongoing role with meetings continuing to take place. Apart from the subject, these meetings are interesting because you get to hear from other participants who carry out an astonishing variety of roles in different fields.

On 20 May 2021 up popped an invitation to join a decision-making project led by Angus McNair, a researcher at Bristol’s BRC. I thought that it sounded very interesting and applied to become a patient representative. Angus invited me to join the group and optimistically said that he looked forward to hearing my thoughts.

I am very practical and brainwashed from school days to be precise and concise. I hoped that this, together with my long working life in medical research, would enable me to provide some useful ideas from the patient’s perspective. I have been part of the ALPACA study ever since, and I can sincerely say that I have always been made to feel a valued member of the group.

I attend meetings and, every so often, am asked to comment on material for the public. Commenting and suggesting changes to improve the appearance and understandability of posters, banners or leaflets is an interesting task. These changes are taken seriously and mostly implemented by the team. This really does make me, as a patient representative, feel a useful member of the group.

I think that in the early days what surprised me most about being a patient participant was the fact that I was being listened to and my ideas were being included in the project. If you have never been involved as a patient or public representative, you tend to think that having such participants may be just a box ticking exercise to show that the project has the requisite mix of participants.

In my experience nothing could be farther from the truth, and this has made my involvement interesting and worthwhile. My ongoing work with the ALPACA study has also resulted in me being invited to be the public participant on a big patient consent form project run by the North Bristol NHS Trust.

The difference I try to make in these projects is to help to keep the patent viewpoint and experience as the primary aim for improvement.

Training opportunities within patient and public involvement and engagement

I recently took part in a training course, PPVE Learning, Patient and Public Voice for which the Alpaca supported my application. It was run online and although I recognise the value of online and face-to-face meetings, I did miss the opportunity for face-to-face chats during coffee breaks. You can learn so much this way from both course leaders and other participants,

Impressions from Learning for PPV

Overall, the course was interesting and provided me information about the changes being put in place to create Integrated Care Boards and Partnerships.

Meeting attendees from different backgrounds and hearing their views and experiences was very educational.

I found the course a bit general and vague but what stood out for me was the challenge of conveying practical suggestions of how to improve you skills and impact as a public contributor.

Word of Advice

My advice to anyone starting out as a public participant is ‘don’t underestimate the contribution you can make’, the research group will take you more seriously than you think.