Don't write me off

Rewrite the Future

We want the Scottish Government to give people with neurological conditions the care and support they need.

Let's change neurological care in Scotland

We want everyone with a neurological condition in Scotland to receive incredible care. Yet, in reality, the care provided across Scotland is often patchy, uncoordinated and difficult to find: it is enough to make people with neurological conditions feel like they have been written off.

The Scottish Government listened to us when we published our first report into neurological care last year: it is now working with the NHS to find out how many people in Scotland have neurological conditions and where they live, so that our NHS and local authorities can then provide them with the care and support they need. Not only that, the clinical standards that govern the provision of health care for people with neurological conditions are now going to be updated and rewritten to include social care.

This time around, our new Rewrite the Future report for 2017 shows that there is still a lot of work to be done on the ground to improve care for people with neurological conditions.

86% of people with a neurological condition in Scotland live in an ordinary care home for older people19% are under the age of 65 

Nine of our 14 health boards have no neurological services plan; six of these health boards do not intend to come up with a plan.

49% of people with a neurological condition who are under 65 have to pay for personal care 

Care homes are very unlikely to receive any specialist neurological support – so if you have a neurological condition and are in an older people’s care home, you are unlikely to get any much-needed specialist care.

And if you are under 65 and have a neurological condition, there’s a 50% chance you will have to pay for personal care.

9 of 14 Scottish health boards have no neurological care plan


But the good news is that the First Minister, Nicola Sturgeon, has pledged to work with us at Sue Ryder to ‘take forward’ the recommendations to improve neurological care in our report.

What can you do to help?

Your MSPs can help change things. Please email them and ask them to write to the Scottish Government to keep the pressure up.

Find out who your MSPs are and how to contact them

You can contact your constituency MSP and all of your regional MSPs. You could include these points:

  • Last year, Sue Ryder revealed that people with neurological conditions in Scotland are being let down by a patchy, uncoordinated approach to specialist care and support.
  • This year’s Sue Ryder Rewrite the Future report shows that, while there has been some action nationally to move things forward, people with neurological conditions are still unlikely to have the specialist care and support they need, particularly in the community. You can read more in the full report.
  • At First Minister’s Questions on 14 September 2017, Nicola Sturgeon committed to taking forward the recommendations contained in the latest Sue Ryder report. I want to see progress on this and would appreciate it if you could contact the Scottish Government to ask them to develop a strategy for neurological care to ensure that everyone in Scotland with a neurological condition gets the care and support they need to live their lives as fully as possible.
  • Finally, please go to the Sue Ryder parliamentary reception on Tuesday 24th October 2017 at 6pm in the Scottish Parliament's Robert Burns Room to find out more.

Please do forward any responses you receive from your MSPs to elinor.jayne@sueryder.org.

Thank you so much for your support.

A report on progress in improving specialist care for people with neurological conditions in Scotland

Read our report