Neuro patience 

We are all used to the big national patient experience surveys carried out by the Care Quality Commission and NHS England.  These cover patient experience of maternity services, community mental health services, GP's and so on.  Results are published by provider and the surveys are, essentially, a test of people's access to, and satisfaction with, services.

But there is another dimension to patient experience which is less well explored.  That is people's experience of living with long term health conditions.  And this really matters, given the increasing emphasis on "self-management" within NHS strategies.

So it is encouraging to see the Neurological Alliance continuing to show a lead in how patients can help to build an evidence base, and a case for change.  Their latest patient experience survey highlights key areas for improvement, based on the following:

• Long delays, and a lack of access to specialists.  Around a third of survey respondents waited more than 12 months to see a neurologist.
• A lack of personalised care.  Only 42% of neurology patients had written information at the time of diagnosis, against 83% of people with cancer.  Just 10% had been offered a care plan.
• Poor experience of social care, with many people dependent on unpaid carers. 
• Disability discrimination in the workplace, and problems accessing welfare benefits. 

This year for the first time the results are broken down to regional level, based on the Sustainability and Transformation Partnership (STP) footprints. The findings reveal wide geographic variation, representing a postcode lottery in access to care.  And it may come as no surprise to learn that people in the most deprived areas report the poorest experiences of care.  

National patient surveys run by the CQC and NHS England are valuable - helping patients and providers alike to get a sense of people's experiences within individual services.  But in an NHS that is building integrated care systems, we need to understand how people experience care across services, and through pathways, and how they cope with extensive periods of self-management of their conditions.  

The Neurological Alliance is uncovering evidence that can provide an important counterpoint to the mainstream national surveys.  Their work deserves to be taken seriously.

You can download the report via our website.
 

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In case you missed it…

We're moving into holiday season, so you might have missed the latest edition of our quarterly magazine, published a couple of weeks ago.  

We have powerful and insightful contributions from Rachael Bull, who goes down the rabbit hole in a healthcare system with a logic all its own, and from Cancer Mum, who had to fight for access to the health records of her disabled son.

Karl Roberts writes on patient leadership: what it looks like and how we can help to develop it.  

And we have a round-up of the latest and best in recent patient experience research, with summaries to take you quickly to the main learning points.  

Get your copy of Patient Experience Quarterly here. 
 

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Free resources

Not a subscriber to the Patient Experience Library?  Don't worry - you can still get lots of free stuff from our website!  

Our quarterly Patient Experience magazine carries insightful comment from a range of contributors, as well as our top picks of recent reports on patient experience and patient/public involvement. 

Patient Experience in England is our annual overview of the evidence base, drawing on surveys and research from government bodies, health charities and academic institutions.  The evidence is broken down into manageable chunks, and research findings are grouped under key themes for ease of understanding. 

You can browse our Knowledge Maps to see how patient experience is being reported in your area.  

And if you want to wear your patient experience heart on your sleeve, you can download and print our posters and stick them on your wall.  Better still, post them to the Chief Executive of your local NHS Trust!
  

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