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UK: The Neurological Alliance: "My Neuro" survey, 2021 (close 6th Feb 2022)

Discussion in 'General ME/CFS news' started by Andy, Oct 25, 2021.

  1. Andy

    Andy Committee Member

    Messages:
    21,810
    Location:
    Hampshire, UK
    From the website:

    Support #MyNeuroSurvey and help improve neuro services
    Take My Neuro Survey online here.

    Take My Neuro Survey now
    Or call the survey partners, Quality Health on 0800 783 1775 (Freephone) to:

    • hear and complete the survey over the phone in any language
    • ask for a paper copy to be sent to your address
    • ask for a large print version
    • ask for an Easy Read version of the survey
    The survey takes around 20 minutes to complete. Your answers will help improve services for people with neurological conditions across the UK.

    When you’ve completed the survey, please tell everyone you know about My Neuro Survey and share the hashtag on Facebook, Twitter and Instagram to help us reach more people living with neurological conditions.

    There is a version of the survey for adults and a version for children and young people. If your child has a neurological condition, you can complete the survey with them or on their behalf.

    Share your experiences
    Getting the right care, treatment and support at the right time can make a lifechanging difference when you have a neurological condition.

    But there are huge variations across the UK – not everyone with a neurological condition in the UK has access to the same high quality, joined up care and support.

    By sharing your experiences, you’ll help to gather the evidence to make the case for change. My Neuro Survey is completely anonymous and secure.

    More at https://www.neural.org.uk/share-your-experiences-with-my-neuro-survey/

    ETA:
    https://twitter.com/user/status/1452562100342116352
     
    Last edited: Oct 25, 2021
    Ash, DokaGirl, Peter Trewhitt and 3 others like this.
  2. NelliePledge

    NelliePledge Moderator Staff Member

    Messages:
    13,142
    Location:
    UK West Midlands
    Well they have ME listed so I filled it in i think important to feed in to highlight the absence of support compared to other conditions
     
    bobbler, Milo, Ash and 11 others like this.
  3. Trish

    Trish Moderator Staff Member

    Messages:
    51,867
    Location:
    UK
    Definitely worth filling in, though I couldn't answer quite a few questions because I have never been referred to a neurologist and there is no neurologist led ME service in my area. It's mostly box ticking, but you get a chance near the end to give your opinion on your local services. Here's what I wrote. They ask for your postcode, and indicated feedback will be given to local services.

     
    Milo, Starlight, JemPD and 11 others like this.
  4. Ebb Tide

    Ebb Tide Senior Member (Voting Rights)

    Messages:
    245
    Helpfully it does allow you to read through the whole survey without having to fill in answers to access the next page.
     
    Ash, DokaGirl, alktipping and 3 others like this.
  5. daftasabrush

    daftasabrush Senior Member (Voting Rights)

    Messages:
    189
    They have been great at highlighting the lack of provision for ME in the past, you can find their previous Neuro Patience survey results online.

    I would really recommend filling it out - there is opportunity to pick Not applicable and to highlight what we are not offered.
     
    bobbler, Milo, NelliePledge and 3 others like this.
  6. Andy

    Andy Committee Member

    Messages:
    21,810
    Location:
    Hampshire, UK
    Amw66 and Peter Trewhitt like this.
  7. Andy

    Andy Committee Member

    Messages:
    21,810
    Location:
    Hampshire, UK
    Two weeks left.
     
    Peter Trewhitt and NelliePledge like this.
  8. Andy

    Andy Committee Member

    Messages:
    21,810
    Location:
    Hampshire, UK
    An update via email.

    "Thank you for all your support with our recent survey of people with neurological conditions across the UK, My Neuro Survey. The survey is now complete and more than 8,500 people across the UK shared their experiences of life with a neurological condition.

    We’ll be sharing the results publicly in the early summer with a campaign calling for changes to improve treatment, care and support. We can't do this without you.

    Join our coproduction group

    We now need your help to make sure our new campaign reflects the change you and others with and affected by neurological conditions want to see. To do this we’d like to invite you to take part in our coproduction group to shape the campaign.

    Apply to join our coproduction group
    Help shape the survey launch and campaign

    Coproduction is all about bringing together people who have different skills and experiences, especially those who have a personal connection or lived experience, to find the best solutions.

    We’re looking for people with and affected by neurological conditions who are willing and able to share their experiences and ideas to join our coproduction group. You’ll work alongside Alliance staff and member organisations to help shape the My Neuro Survey launch and campaign. You don’t need any experience of coproduction or campaigns. We want to hear from everyone.


    Representing everyone in our community

    We are looking to recruit a range people from throughout the UK with a connection to different neurological conditions so that everyone in our community is represented, including:

    • People with rarer neurological conditions, and
    • Groups who are often underrepresented in research and coproduction, including people from Black, Asian and Minority Ethnic backgrounds and the LGBTQIA+ community.

    Ready to take part and make a difference for our whole community?

    Please apply using the webform below by Sunday 27 March.


    You can find out more about the group and the role here.

    You can apply to join the group using this short webform.

    For support with signing up or any questions please email info@neural.org.uk or call 01923 882590.

    We're looking forward to hearing from you!

    Thank you and best wishes,

    Jess Mansel,
    Coproduction Group Coordinator
    The Neurological Alliance"
     
    bobbler, Mithriel, Sean and 1 other person like this.
  9. Andy

    Andy Committee Member

    Messages:
    21,810
    Location:
    Hampshire, UK
    Together for the 1 in 6: findings from My Neuro Survey

    1 in 6 people in the UK live with a neurological condition, but there simply isn’t the workforce or services in place to provide the support they need.

    From a lack of mental wellbeing support, delays to life changing treatment and care and a lack of information and support at diagnosis, over 8,500 people living with or affected by neurological conditions across the UK shared their experiences in the 2021/22 My Neuro Survey, which closed in March 2022.

    Every two years, The Neurological Alliance runs My Neuro Survey to give a picture of the experience of care, treatment and support for people with neurological conditions.

    https://www.neural.org.uk/togetherforthe1in6/

    From the link above you can access the survey report and individual data sets.
     
    Mithriel, Trish and Peter Trewhitt like this.

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