Living with pain

Pain is whatever the experiencing person says it is, existing whenever and wherever the person says it does.

- Margo McCaffery

The PAINSTORM Patient Partners

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Jo Josh

Jo Josh is a communications professional whose experience includes BBC and independent outputs, freelance contributions to national press, magazines and specialist industry titles, as well as public relations and marketing for a wide range of clients.

Since 2018 Jo has managed media, health system and advocacy communications for the British HIV Association. Recent experience includes plain language translation of research papers (IASP 2022) and patient communications for the pilot OPEN study at Chelsea and Westminster Hospital. She is a founder member of the Global HIV Pain Task Force and the Canada International HIV Rehabilitation Research Collaborative (CIHRRC).

Current research involvement includes the RIO study into the use of broadly neutralising antibodies (bNAbs) to achieve viral suppression of HIV.  She is a former Vice Chair of NICE Clinical Guidelines Rapid Updates Standing Committee C (2014 – end 2017).

liddle gordon

Gordon started out as a zoologist with specialisations in Polar Science and Fisheries. He subsequently specialised in the collaboration between the Arts and Science and, more recently, in the therapeutic use of arts in mental health focussing on communications with vulnerable adults, including in hospitals, prisons and in the community.

talkington fiona

Fiona is a UK-based broadcaster, writer and speaker, best known to radio audiences as a founding presenter of BBC Radio 3’s Sony Gold Award-winning Late Junction. She has presented for the BBC since 1989 working across a wide range of programmes, from Breakfast to live Proms concerts at the Royal Albert Hall.

In 2004 Fiona was presented with the coveted Molde Rose award by the Molde Jazz Festival, and in 2009 she was awarded the Royal Norwegian Order of Merit for her services to Norwegian arts. She continues to be at the forefront of creative musical partnerships between the UK and Norway; she devised and curated the hugely successful conexions series for Nasjonal Jazzscene in Oslo in addition to the national folk stage in Oslo, Riksscenen.

She has written for the Guardian and Independent newspapers, BBC Music Magazine, and is a regular reviewer for Songlines magazine. She also finds time to write for Finnish Music Quarterly.

Fiona is a Patient Partner with PAINSTORM and has lived with chronic neuropathic pain since her treatment for breast cancer. She is currently working to complete her MSc degree writing an autoethnography focussing on expressions of pain.


The PAINSTORM approach to Patient and Public Involvement

We have been working as a team of patients, clinicians and researchers to develop the PAINSTORM project, inspired by research and conversations with people living with NeuP. Patient partners have actively shaped content to ensure we address unmet needs.

Our patient partners reminded us of the relevance of the statement made by pain pioneer Margo McCaffery 50 years ago, “Pain is whatever the experiencing person says it is, existing whenever [they] says it does”. Often, however, research focuses on a few narrow aspects of pain and “objectivity”, without sufficient consideration for how the multiple facets of pain come together to affect the subjective experience of the people living with it. The lived experience of neuropathic pain is therefore central to all planned work. Our team has taken a holistic and person-centred approach to understanding neuropathic pain, using modern methodologies and technologies to examine the multiple layers of neuropathic pain and its whole-person impact. Only by working with patient partners and people living with neuropathic pain will we be able to make sense of data from each work package.

Together, we will be able to piece together the neuropathic pain jigsaw puzzle to create a comprehensive understanding of the condition and, ultimately, innovate whole-person treatments.

Recommended reading

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The Initiative on Methods, Measurement, and Pain Assessment in Clinical Trials (IMMPACT) convened a meeting with patient partners and international representatives from academia, patient advocacy groups, government regulatory agencies, research funding organisations, academic journals, and the biopharmaceutical industry to develop consensus recommendations for advancing patient engagement in all stages of clinical pain research. This article offers considerations for meaningful and authentic engagement of patient partners in clinical pain research, including recommendations for representation, timing, continuous engagement, measurement, reporting, and research dissemination.

Read the article here

Read also the commentary by Blair Smith and Joletta Belton in the May 2024 issue of PAIN

Racism is an established health determinant across the world. In this 3-part series, the authors argue that a disregard of how racism manifests in pain research practices perpetuates pain inequities and slows the progression of the field.

Part 1 - Confronting Racism in Pain Research: A Call to Action

Part 2 - Confronting Racism in All Forms of Pain Research: Reframing Study Designs

Part 3 - Confronting Racism in All Forms of Pain Research: A Shared Commitment for Engagement, Diversity, and Dissemination