England: Neurological Alliance Survey on Neuro Patient Care from the NHS

[Firestormm]

This is a good opportunity I think anyway, to express your thoughts about care for ME by the NHS. I have done the survey and it didn't take that long - though I did have a lot to say - and aside from your experiences it also asks about time taken to diagnose, how many professionals you saw, if you saw any, etc. all that sort of thing.

Yes. Myalgic Encephaloymyelitis is listed as a Neurological Condition and advocated for as such by the Neurological Alliance. I should know I worked with them in the past on a local project. And you'll find the right 'tick-box' in the survey for ME.

Anyway, here it is:

30th June 2014

Patient experience survey launched - take part today

Today we have launched our neurological patient experience survey

The survey is the first of its kind for the neurological community. It aims to collect vital information about the experiences of care received by people affected by neurological conditions and help us to understand how much progress has been made in improving neurological services.

The survey is open until Monday 15 September 2014 and we welcome responses from anyone with a neurological condition living in England.

We will be using the survey findings to feed into a report later this year. The report will set out a comprehensive picture of what is happening in relation to neurological services and make recommendations about how care can be improved.

This is without doubt a timely and exciting opportunity for the neurological community.

We need your feedback to be able to make the strongest case to decision makers about how services need to change. We really value your support and look forward to sharing our findings with you over the coming months.

Please click here to complete the survey.

N.B. A reminder came up on Twitter today and I happened to notice it, hence why I am posting it now.

 

[Firestormm]

If you have had no experience of neurological services in England - and you live in England - then your experience is still valid and shouldn't prevent you completing the survey. ME is neurological and as such you should be referred etc.

Similarly, if your experience of e.g. a neurological consultant was 'bad', or a GP, or a specialist service was felt to be 'not fit for purpose', say so, etc.

These views are what they want to hear - alongside 'good' ones too...

 

[Sasha]

Thanks, @Firestormm - done.