Share your experiences of chronic pain and Long COVID
- Written by: Audrey Birt — Health and Social Care Alliance Scotland — Associate Director and Angela Donaldson-Bruce, Scotland Director, the ALLIANCE
- Published: 22nd February 2021
Audrey and Angela want to hear from you.
We’ve long campaigned for the importance of people with lived experience influencing policy and practice. And both of us have had deep satisfaction from enabling these voices to be heard in a variety of ways. Very recently our focus has turned to chronic pain, not least because of Audrey’s own spinal cord damage as a result of a benign growth and living with breast cancer, and the years that Angela has lived with rheumatoid arthritis. Consequently we both experience significant pain daily.
Pain research
We are now part of a national committee – the NRS Pain/SPaRC (this link will take you away from our website) – that guides research into chronic pain. This research recognises the complexity of what chronic pain represents and now wants to ensure the people with lived experience also help to influence the focus on this work.
In 2021 it’s never long till COVID-19 is mentioned when we join together, and our first SPaRC meeting was no different. This winter, lockdown has had a devastating effect on so many, but of course so has the condition itself. Research is looking at the physical and emotional impact of the pandemic and what’s known now as Long COVID. But what about pain and indeed for those with Long COVID, chronic pain and COVID-19? Our sense was this could well be an issue but as yet we aren’t sure. We know headaches and joint pain are an issue initially with this virus. And for some they do continue. What causes this pain, is it a inflammatory process, is it neurological, how does it show up in Long COVID, how might it be helped and can we predict the at risk?
We are keen to speak to people who have Long COVID and recognise that pain is part of it. Would you be willing to tell us your story? Please email Audrey at audrey.birt@alliance-scotland.org.uk or Angela at A.Donaldson-Bruce@versusarthritis.org.
End of page.
You may also like:
A child cannot truly feel safe in a school or community if they do not feel that they belong.
Continue readingFor 20 years, The ALLIANCE has listened to member voices to help protect and improve Scotland's care services.
Continue readingWith the ALISS Customisable Map Tool, organisations can share info about community resources in ways that work for the people they support.
Continue readingIrene Mackintosh, CEO at Mhor Collective shares highlights and hopes for rights in a digital age.
Continue readingIn her latest TFN column, our Chief Officer Sara Redmond reflects on the proposal to collapse Scotland's 14 regional health boards into two.
Continue readingWhen we listen to lived experience, we create better resources, challenge assumptions and help create safer communities for everyone.
Continue readingGozie reflects on supporting citizen engagement, digital inclusion and hopes for the future.
Continue readingDCP member and Project Co-ordinator Esther Misajel shares Pachedu's journey towards digital inclusion.
Continue readingChris Mackie, Director of Digital, reflects on what ALISS has achieved so far this year and shares what is still to come.
Continue readingAt the ALLIANCE and beyond, true and meaningful policy reform means turning people's experiences into lasting action on the ground.
Continue readingGLP-1s can transform health but without adequate wraparound support, weight loss may come at the cost of nutrition, muscle and wellbeing.
Continue readingSheila Duffy, Chief Executive of ASH Scotland, is appealing for support for proposals to restrict tobacco, vapes and nicotine products.
Continue readingBilly McClean reflects on why SCIC26 offers a vital opportunity to learn together, share what works, and shape the future of integrated care
Continue readingTo mark the ALLIANCE's 20 year anniversary Paul Okroj reflects on the importance of supported self management.
Continue readingTo mark Scottish Learning Disability Week (7 - 13 September), Bruce Adamson reflects on this year's call to action.
Continue readingIn her latest TFN column, our Chief Officer Sara Redmond reflects on the current state of social care in Scotland.
Continue readingKicking off September for the ALLIANCE's 20 year anniversary, Grace reflects on the Self Management Programme
Continue readingSara Redmond, ALLIANCE Chief Officer, on the priorities for 2026's Programme for Government.
Continue readingSandra Auld reflects on the ALLIANCE's people focused impact, collaboration, lived experience, campaigns and lasting change in Scotland.
Continue readingMark shares his experience with gambling harms, and how this intersected with the launch of the ALLIANCE's ScotRGH programme in 2020.
Continue readingProfessor Anna Glasier celebrates 20 years of the ALLIANCE and it's vital role in shaping the Women's Health Plan for Scotland.
Continue readingSara Redmond, ALLIANCE Chief Officer, on the challenges faced by community-led health organisations in delivering prevention.
Continue readingAnnie shares her experience of youth politics, and how SAFE has helped her make connections and makes sense of the world of politics.
Continue readingChloe Craig reflects on how we have helped connect Scotland’s lived experience voice to conversations happening beyond our borders.
Continue readingDr Irene Oldfather reflects on two decades of growth, collaboration, and person centred impact across Scotland and beyond.
Continue reading