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Experts by experience

Engaging with people who have lived experience of mental health problems in the design and implementation of mental health services has been shown to empower service users, increase the quality of services and improve clinical outcomes.

The Mental Health and Smoking Partnership recommends that service users are consulted in the design, delivery and evaluation of tobacco dependence treatment services in mental healthcare settings.

ASH Smoking and Mental Health Lived Experience Group

In 2022 ASH set up a working group of individuals with lived experience of tobacco smoking and mental illness. The group is made up of people with experience of patient representative work and strives to bring the voice of a wide range of experiences of mental health, and how it intersects with smoking, to our work.

Smoking rates among those with mental health conditions are double that of the general population and rates amongst those with serious mental illness are even higher. The lived experience group was established to ensure our work to reduce smoking prevalence in these groups is responsive and sensitive to the realities of living with poor mental health, smoking and nicotine addiction.

The group is committed to understanding tobacco dependence not as a ‘bad habit’ but as a powerful addiction that needs to be prioritised for treatment as part of a wider pledge to improve the mental and physical health of those living with poor mental health.

Some examples of work undertaken by the group include:

  • Reviewing and co-producing resources and other work carried out by ASH and the Mental Health and Smoking Partnership.
  • Reviewing work undertaken by external partners including the Tobacco Addictions team at Kings College London.
  • Supporting national advocacy activity.
  • Presenting at events.

If you would like to present any work to the group for feedback or input or would simply like to know more about the group and it’s ways of working, please get in touch at admin@smokefreeaction.org.

Useful resources

You can find videos and resources below which are intended to reflect the lived experiences of smokers with mental health conditions, and support the development of policies and practices that are informed by service user experiences.

Stories from smokers with mental health conditions (2020)

ASH together with the University of Bath and the University of York have produced five inspiring videos showing the journey of smokers with mental health conditions who’ve successfully quit, and call on health professionals to do more to help others do the same.

Caroline’s story

“I remember saying to my psychiatrist that I wanted to quit smoking… I was constantly smoking as there was nothing else to do. He said, ‘let’s just do one thing at a time’. So, let’s get my mental health under control and then look at quitting smoking. That for me was the green light to keep on smoking.”​

Hameed’s story

“The mental health system fails in the sense that it tries to deal with one issue as the main one. A more holistic approach needs to be taken because sometimes everything is interconnected. I was being helped with my mental wellbeing but was still chain smoking, so I felt more depressed and got more unwell. I think the services have to work together in more of a joint approach.”

El’s story

“I was quite pleased with myself, I do quite a lot to stay on top of my various eating problems and getting so easily stressed about stuff so I was generally feeling a sense of manageability in my life. I really didn’t think that being able to give up smoking would add to that but it did actually.”

Paul’s story

“Even though my health problems aren’t all gone, I’ve got a few to contend with, [quitting smoking] is one thing that I made an effort with and I succeeded. So I feel good about it.”

Julian’s story

“I was made to feel really quite positive about giving up smoking. I felt quite elated that I managed it and also felt that I had that extra time and money to myself where previously I was wasting my time smoking.”