The Chronic Illness Inclusion Project is a new research project aiming to capture the views, needs and aspirations of people with chronic illness. Sign up to get involved. In the longer term our ambition is to grow into a user-led organisation.
A new project aims to give a voice to people with chronic illnesses that get overlooked and misunderstood by the systems that should be supporting us.
The Chronic Illness Inclusion Project is a research project aiming to capture the views, needs and aspirations of people with chronic illness. It is part of the DRILL programme of user-led research and is supported by the Centre for Welfare Reform. You can sign up to find out more and get involved here
“As a sufferer of chronic ill health, I fully support the Chronic Illness Inclusion Project. People with chronic ill health are forgotten by governments when designing policies and never mentioned. We are often hidden by the umbrella term of ‘disabled’. The impacts of chronic ill health are wide ranging, from severe fatigue and cognitive problems, to days spent in lots of pain. The effects have a huge impact on the day to day functioning of a person. Many spend long hours unable to sleep or sleeping for long hours out of sheer exhaustion. You really cannot grasp those impacts unless you are affected by chronic illness. It’s not just the physical issues, you have to store that energy up to even have a shower or even go out for the day and plan well in advance, only to spend the next few days paying the price for small bit of enjoyment. It is time our voices were heard too, instead of our voices being alone in the wilderness. It can be very isolating. I urge people to join and support this campaign.”
– Gail Ward, Disability Campaigner DPAC NE/Black Triangle Campaign
We are inviting people to sign up to our mailing list where we can keep you up to date with activities and opportunities to get involved. Currently we’re planning an online discussion forum for people who are interested in having in-depth discussions about the social and political aspects of living with chronic illness. But in the longer term our ambition is to grow into a user-led organisation. How this happens could be up to you!
It will take time because we are two people with chronic illness working very part time hours. But this is a lottery-funded project where numbers count so by joining us you can help to show what a large and overlooked group we are.
Find out more by signing up to the mailing list
Catherine Hale and Jenny Lyus.