A red letter data day: what are the experiences of people with neurological conditions?

It’s an important day today for us in the policy team here at Sue Ryder. Today, the results of the biggest ever survey into the experiences of people with neurological conditions in England are published.

This is a survey run by the Neurological Alliance (a membership body for over 80 neurological charities including Sue Ryder). It looks at issues such diagnosis, health care, social care and access to benefits.

Why these results matter

These new survey results are really important for a few reasons:

  • There just isn’t enough data on the experiences of people with neurological conditions. So these new results are a really valuable addition to our understanding of how the health and care systems work (and where they don’t). This survey is the only one of its kind, targeted specifically at people with these conditions.

  • Better understanding the problems highlighted by the survey lets us call for more appropriate solutions and lets us focus our efforts and energies more effectively. To put it another way: these new results let us fine-tune the things we are fighting for.

  • These results are absolutely vital ammunition - they provide evidence of the challenges that do exist and they help us quantify the scale of the problems there are. They help us make the case for change.

So while the results of the survey itself might make for gloomy reading, it’s actually really important for our work that we have these new findings to look through.

This survey is one of the few good sources of data we have on people with neurological conditions. So, for people like us in the policy team, it’s a really significant event when its findings get published.

We will be making the case for change

Sue Ryder have been involved in the creation of this survey and have also been involved in analysing the new results and working out what needs to change to address the problems it has highlighted.

We will be working closely with the Neurological Alliance and other neurological charities to follow through on the findings of this survey.

Read the full Neurological Alliance report:

Duncan Lugton

Policy and Public Affairs Manager (England)

Duncan Lugton