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Susan Mountain is a public contributor to research, and she gives her time to help us to shape and deliver one of our key research projects. She is a former smoker and laryngeal cancer survivor and in this blog she shares her experiences of being part of a national ARC-led evaluation of the implementation and impact of NHS-funded tobacco dependence services.

I’m Susan Mountain and I am on the Public Advisory Group for the project ‘Supporting the NHS long term Plan: an evaluation of the implementation and impact of NHS funded tobacco dependence services’.

I was invited to become involved with this project through my involvement in a North East tobacco control programme, FRESH.  I had cancer of the larynx because of my addiction to cigarettes.  This cancer was a preventable cancer.  I would not have gotten the cancer if I did not smoke.  However, I had tried so many times to quit but was unsuccessful because my addiction was too strong.  After having radiotherapy, I became involved with Fresh because I wanted to help prevent people going through what my family and I went through.

When I was asked to become involved in this research, it was a no brainer.  This would give me more information into how the services worked and maybe help them work better.

‘Research about us is nothing without us’

I felt involved from the very beginning.  Angela (the project’s Public Involvement Lead) and the research team made me feel my input was important.  On hindsight, why would you do research about the public without having public voice?!  Somewhere within the numerous pieces of research activity I have since been involved in, someone once said, ‘Research about us is nothing without us’.  It’s so true, I say researchers cannot assume our (public) experience, pain or thoughts.

Angela never assumed anything; she involved us right from the beginning.  We had input into the language in the questionnaire, and when to give the questionnaire to hospital patients.

We are kept up to date with the project progress and discussed how to move forward. I was also given the opportunity to be part of a steering group.

One of my tasks was to read the participant information sheets and give feedback. I found that the sentences were complex, used some jargon and just looked too much to read.  To address this, we changed things, like using bullet-points to summarise information, and when we were finished the overall look was so much simpler and easier to read.

I also shared my view on when patients should be approached to take part in research – having been in hospital a number of times, I personally thought not around discharge, as it would be too much – all that is on your mind as a patient is, “get me home”.  This was heard and patients were approached during their stay by a research nurse at an appropriate time.

I was also invited to a national research symposium in York to present a poster that we created as a team.  We took it in turns to stand by the poster and talk about our involvement.  We won ‘best poster’ which was a great feeling being part of such an amazing research team.

I am hoping that this research highlights good practice but also areas that can improve the cessation program so that people can quit for good and maybe not have to go through what my family, friends and I went through.

Getting involved helped me get my self-worth back

Thanks to Angela and the team, I now have a lot of confidence to help with the Government Ambition to make England smokefree by 2030. I’m involved in so many tobacco research projects now and I am also involved in the Quitt program, which looks at providing an inpatient tobacco dependency service and ways in which to help patients quit for good.

As a result of taking part in this research, I got my self-worth back and my drive to help others.

Susan has also shared her story as part of Fresh’s Smoking Survivors campaign and recently addressed an MPs panel – you can read more here.

Find out more about the project – Supporting the NHS long term Plan: an evaluation of the implementation and impact of NHS funded tobacco dependence services’.

If you would like to find out more about getting involved in our research as a patient or public contributor, please contact:

Dr Angela Wearn ([email protected])  – Research Fellow in Public Involvement and Community Engagement, NIHR Applied Research Collaboration NENC.