‘This will change lives’ - UK’s first National Pain Survey launched

Antony is no stranger to pain - he developed chronic pain as a young adult, and what followed in those early years was misdiagnosis, heartbreak and loss. 

Antony’s life with pain began with renal pain from kidney stones. He experiences a rare condition where stones and crystals form constantly, which has led to him developing osteoporosis, a health condition that weakens his bones. By the time he reached his early twenties, Antony had lost his job, home and partner due to the wide-ranging effects of living with pain.

Unfortunately, Antony’s story is not uncommon, with a large portion of the UK population living and suffering with chronic pain. 

Chronic pain is described as pain that lasts longer than 12 weeks, beyond the natural healing time, and according to NHS statistics, it affects anywhere from 35-51% of adults in the UK. Many agree that chronic pain is a major unmet global public health challenge.

The Alleviate Pain Data Hub, led by the University of Dundee, aims to accelerate pain research by highlighting the lived experiences and issues of the chronic pain community through the UK National Pain Survey. Feedback will help inform various researchers and stakeholder audiences to help determine direction and strategy.

Talking about his own experience, Antony said, “I went from having an active life to not being able to get off the sofa or get out of bed due to pain, and being in so much pain that I was generally distracted and couldn’t focus on anything. I went from one world to another, where I was just about surviving. I felt like I wasn’t living, I was just existing. 

“There are eight million people in the UK living with moderate to severe pain, like me. Research is key for every condition, and this survey will aid the chance of finding new treatments, new ways of treating pain and new ways of managing pain. This will change lives.”

Alleviate has launched the UK National Pain Survey in collaboration with the Advanced Pain Discovery Platform (APDP), Chronic Pain Australia and Pain UK, building on work from a similar survey run by Chronic Pain Australia.

The UK National Pain Survey is open to adult participants from the UK who have direct experience of living with chronic pain. Participants can access the survey online.

Dr Chris Cole, Director of Alleviate Pain Data Hub, said, “Through our work with patient partners in Alleviate we have been inspired and humbled by their lived experience, like Antony’s, giving us added motivation for the wider aims of the project. 

“There hasn’t been a large-scale survey in the UK since 2016 and with the current challenges post-Covid and the cost-of-living crisis we need to update what is important to those living with pain. People’s responses to this UK-wide survey will be reported on and will help inform future directions in pain research to best meet the needs of the pain community.”

Although at first living with pain destroyed Antony’s life, he has now become much better at being a ‘self-manager’ of his long-term conditions, having attended the Expert Patient Programme course. He later joined the patient group at the Royal College of General Practitioners and was eventually elected chair of the group. Following that, Antony became a trustee at Pain UK and was then chair of the charity until 2022.

Antony believes in the power of research and evidence to change hearts and minds about the effects and impact of living with pain.

“People living with pain generally don’t feel listened to, don't feel understood and don't feel believed. Pain has such a stigma to it. This survey has the power to put a spotlight on pain in a way that hasn't happened before, and Alleviate can supercharge research into pain, helping people now and in the future.”

More information on the Alleviate Pain Data Hub can be found online at alleviate.ac.uk.