Starting in 2022, Pain UK began a research project, funded in part by a generous unrestricted grant from industry: The UK Lived Experience of Pain Project (UKLEPP).
- Pain UK established an external steering group for this project, chaired by Fiona Hodson, President of Chronic Pain Australia and past President of The Australian Pain Society
- The researcher that Pain UK commissioned, Renée Blomkvist, was funded to conduct a rigorous systematic literature review of all relevant studies regarding the lived experience of pain for people in the UK, and to create a survey based on the data from the review.
- The survey was circulated to our individual members, as well as the Pain UK charity members for distribution to their individual members. The survey received over 1000 responses. This is the first stage and when Pain UK has the funding, we plan to commission further work, analysing the results of the survey and carrying out focus groups in each of the 4 nations of the UK.
- To continue this work, we need to raise £20,000 and there is a Crowdfunder running with an aim of raising some of this sum. https://www.crowdfunder.co.uk/p/the-uk-lived-experience-pain-project?
- Pain UK has now published a paper in the British Journal of Pain, a respected peer-reviewed journal with the results of this. https://journals.sagepub.com/doi/pdf/10.1177/20494637231196426
- We are now focussing on producing a report of the findings for government, employers and decision makers in health, social care, and housing to raise awareness around what it is truly like to live with long-term pain.