We’ve successfully used your experiences to influence national decisions, including talking to NHS Scotland about how to properly support the muscle wasting community and in the new NHS 10-year health plan for England where we strengthened the focus on rare diseases.
More recently, we’ve used financial information you provided for the Timms review, which is looking at how benefits can be fairer for disabled people in England, Northern Ireland and Wales.
But we know things change quickly and to ensure that the information we have is up to date and reflects your current circumstances, we’re at a point where we need to gather more recent experiences of people.
With your permission, we will take what you share directly to politicians, healthcare leaders and hospitals across the UK.
Alongside this survey, we’re also speaking to healthcare professionals and mapping services across the UK so we can better understand where improvements are needed
Together we can make change happen.