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Michele Angelo Petrone
PAINSTORM (Partnership for Assessment and Investigation of Neuropathic Pain: Studies Tracking Outcomes, Risks and Mechanisms) is a collaborative project between scientists at the University of Oxford, Imperial College London, University of Dundee, University of Aberdeen, Ghent University, King's College London; pharmaceutical companies Eli Lilly and AstraZeneca; and Patient Partners Fiona Talkington, Jo Josh, and Gordon Liddle.
PAINCAST is presented and produced by one of the three patient partners involved in the study, BBC Radio presenter Fiona Talkington, and BBC radio producer Mark Smalley. Fiona, who herself lives with neuropathic pain following treatment for Breast Cancer, hopes that the podcast will lead to recognition of the huge impact neuropathic pain can have on the lives of those experiencing it.
'We hope that this podcast will lead to a wider understanding of neuropathic pain and its often devastating effect on peoples' lives', says Fiona. 'We hope that it will prove helpful for people living with neuropathic pain, for their carers, families and employers, as well as all levels of the medical professions and researchers. The content is carefully curated and we think it will be a good listen.'
Incidence of neuropathic pain
Chronic neuropathic pain affects around eight per cent of the UK population, and usually occurs following damage or injury to the sensory nervous system. Nerve damage can be caused by a range of conditions, including diabetes, HIV, chemotherapy for cancer treatment, or traumatic injury, such as amputation.
It is a life-changing condition which causes extremely complex changes in sensory experience such as stabbing, electric shock, burning pain, pins and needles, and itch. Ironically these sensations are often combined with a loss of sensation and numbness, for example not being able to properly feel the ground.
Neuropathic pain can be difficult to manage because it is generally unresponsive to the medications used to treat other types of pain. This means that as well as trying to cope with high levels of chronic pain, those living with the condition may also experience disturbed sleep and lack of mobility, plus consequent emotional side-effects through insomnia, fatigue and depression. They also share the difficulties experienced by anyone with invisible disabilities, where lack of recognition by society can lead to discrimination, harassment, and financial hardship.
The research
The research team is studying people who are at risk of neuropathic pain and following their progress over time. The aim is to understand what outcomes are important to them, regardless of the cause. One of the key questions is understanding why some people are severely impacted, while others with a similar pattern of nerve damage, are not.
The podcast
The podcast features interviews with people living with neuropathic pain, as well as with pain specialists working on PAINSTORM, including Professor David Bennett from the University of Oxford. It explores creative approaches to pain management through, for example, dance music, art and writing.
Says Professor David Bennett: 'It has been such a rewarding experience to be involved in a podcast engaging both those trying to understand and treat neuropathic pain and those living with this disabling condition. This has certainly given me a new perspective and I am hoping it will improve education and understanding of neuropathic pain for researchers and patients alike'.
PAINCAST will be available on Transistor and all major podcast platforms, and via the PAINSTORM website.
contact
Contact painstorm@ndcn.ox.ac.uk with any questions about the podcast.