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National Neurology Patient Survey 2018/19 Results

Richard_Scope
Richard_Scope Posts: 3,106

Scope community team

edited October 2019 in Cerebral palsy


I am pleased to share the report of the 2018/19 National Neurology Patient Experience Survey, which The Neurological Alliance has launched today.  The report is called Neuro Patience; a title chosen with intended irony given the results show that the experience of people with neurological conditions remains poorThe main message in the report is that care and support for people with neurological conditions should be accessible, personalised and holistic – but the survey findings show that this is far from the reality for many people.  On our website, as well as our full report of the survey findings, you can find an interactive map about regional variation in patient experience, a summary of the key findings as well as how to take action on the results by writing to your MP.

In the report, the Neurological Alliance set out the findings as well as what change should happen as a result. The findings are being discussed with a number of key decision makers in Parliament this Wednesday and with NHS England’s Medical Director on Thursday. 


Scope
Specialist Information Officer and Cerebral Palsy Programme Lead

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Comments

  • dolfrog
    dolfrog Member Posts: 441 Pioneering
    Hi @Richard_Scope
    They still have a long way to go.
    No mention of the 4 types of Auditory Processing Disorders.
    Hopefully they will eventually get up to date regarding these issues and make some progress to the required muli - disciple approach required to investigate and provide understanding and support for these neurological issues. 
  • pollyanna1052
    pollyanna1052 Member Posts: 2,032 Disability Gamechanger
    After being under several neuros for 17 years and receiving 2 wrong diagnoses, I was finally discharged, because they didnt know what was wrong with me. So now I am not monitored and will never know why I can`t walk.
  • Richard_Scope
    Richard_Scope Posts: 3,106

    Scope community team

    I can imagine how incredibly frustrating that is @pollyanna1052
    I work with people and families that are still striving for some sort of definitive diagnosis. I have heard first hand about the strain that it puts a person under. I'm here to support you and talk if you need to.
    Scope
    Specialist Information Officer and Cerebral Palsy Programme Lead

    'Concerned about another member's safety or wellbeing? Flag your concerns with us.

    Want to tell us about your experience in the community? Talk to our chatbot and let us know. 

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