Cookie policy: This site uses cookies (small files stored on your computer) to simplify and improve your experience of this website. Cookies are small text files stored on the device you are using to access this website. For more information please take a look at our terms and conditions. Some parts of the site may not work properly if you choose not to accept cookies.

Join

Subscribe or Register

Existing user? Login

Psychosis patients' voices are lost in research papers and at conferences, so I'm telling their stories

I’m a mental health pharmacist and I recently finished a two-year masters degree in clinical research in patients’ experiences of psychosis. It was one of the most challenging and rewarding things I have undertaken to date: from obtaining ethics approval, to data analysis, to the arduous write-up and viva that followed.

Now, another challenge follows: disseminating the findings. The results of the study are poignant and meaningful, and people who have heard me present them have been very moved by them. The narratives of the people that I interviewed really matter and it makes a difference to hear them.

Usually, researchers disseminate their findings at conferences and through a publication. The findings may reach a few thousand people and will perhaps inspire a handful to action. Research papers and speaking at conferences are important, but patients’ voices, and those parts of life that don’t fit neatly into a traditional report, are lost[1],[2],[3],[4],[5]. I feel a responsibility and ethical obligation to make sure I do justice, and be a spokesperson, for those who shared with me their journey of psychosis and medication.

Theory and research findings are largely unintelligible to audiences untrained within the disciplines[6]. While the complex, technical language of healthcare and academia has its place, it is important that we recognise that it can be inaccessible, impenetrable or intimidating to those outside[5]. It can exclude many people in society from engaging with its content, and can exclude the people our NHS exists to serve: our patients, their carers, and their community.

Alternative, more accessible forms of communication are needed; not to replace existing forms of communication in healthcare, but to augment the currently limited reservoir of approaches[5].

This is why I am taking my research not only to the page, but also to the stage. I am using my craft as a professional storyteller to share my research findings. I will be telling people’s real life stories of mental health: their experience of stigma and their journey with antipsychotic medication weaved into a wonder tale. These are stories of overcoming obstacles, and are full of depth and wisdom, yet such performances are rare.

This is a lesser-known way of disseminating research findings — and I am lucky to be part of a team who are supportive because isn’t this the way innovation occurs?

The hardest part of this project is obtaining funding, and I am currently crowdfunding in order to make it a reality. If you are able to, do contribute at: https://www.crowdfunder.co.uk/mental-health-storytelling-project

 

Nana Tomova, lead pharmacist in mental health, Sussex Partnership NHS Foundation Trust; visiting lecturer, University of Brighton

Citation: The Pharmaceutical Journal DOI: 10.1211/PJ.2020.20208242

Readers' comments (1)

  • I have been a pharmacist for 36 years with a wide and fulfilling career experience. I am also a chronic pain sufferer. I have been reduced to a mere wreck of my former self due to this. The impact of this on moods is beyond the comprehension of those who sit on NICE panels. They consider evidence-based medicine only. Patients' experiences with pain are not evidence based, so are irrelevant to those pen pushers. I am a scientist by nature and have stong confidence in evidence-based medicine when it is practiced with patient factors as considerations.

    In my case I have to rely on paracetamol and codeine for pain and to find a happy medium with IBS (also mentioned in the draft guidelines), to avoid 8 or more bowel openings a day, urgency, discomfort, flatulence and ano-rectal fissures caused by bowel frequency. I use ibuprofen only occasionally to treat flares, quite successfully, I might add. Even though there is never a pain free period, I refuse to use more powerful medication. I rely on physical mobilisation and trying to keep a positive mental attitude. The pain has given way to depression, which is hard to write about here, but I wish to tell my story, so I will. I take the antidepressants mentioned in the guidelines, to get through the days, they may relieve pain to a degree (who knows), but I need to rely on the pain medication, despite my best effort to get by without.

    Paracetamol, codeine and ibuprofen have been around for a very long time. They were around long before evidence-based medicine was in its infancy. Big pharma has no gains to make from sponsoring drug trials with these, to produce definitive evidence of benefit (or not), so NICE relies on "available" evidence base (or lack thereof). This draft guideline is flawed to the greatest extent as it does not consider real patient factors, like mine.

    As am employee pharmacist, I do not have the luxury of devoting time to attend psychological therapies, I have tried acupuncture without success. I do not even have time to practice mindfulness due to the amount of time I am at work or traveling to and from work. How would the NICE panel square, time away from work to manage my pain by attending these alternative therapies, with my employers?

    Time for NICE panels to wake up and smell the coffee.

    Unsuitable or offensive? Report this comment

Have your say

For commenting, please login or register as a user and agree to our Community Guidelines. You will be re-directed back to this page where you will have the ability to comment.

Recommended from Pharmaceutical Press

  • Print
  • Share
  • Comment
  • Save
  • Print Friendly Version of this pagePrint Get a PDF version of this webpagePDF

Jobs you might like

Newsletter Sign-up

Want to keep up with the latest news, comment and CPD articles in pharmacy and science? Subscribe to our free alerts.