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.
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 firstname.lastname@example.org or Angela at A.Donaldson-Bruce@versusarthritis.org.