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

Andy

Andy

Retired committee member
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/

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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.

People with ME/CFS, including me and my daughter, are severely discriminated against by the NHS. I was diagnosed by GP 32 years ago and have never been referred to any consultant. Our local OT run ME service is not fit for purpose. I have no care plan and my GP's over the years have treated ME as trivial and given bad advice to exercise, and no help with symptomatic assessment or treatments.

I hope, once the new NICE guideline is published in the coming days, my local service will create a more appropriate consultant led specialist service with access to care for those like me who are largely bedbound and currently have no specialist nurse services or care plans available. We need clinicians who can understand and treat the full range of physical symptoms of ME/CFS including pain, sleep problems, gastrointestinal problems, orthostatic intolerance etc, and help and support with getting the care we need, not just waffly advice about activity diaries and relaxation, and harmful encouragement to increase activity.
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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.
 
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"
 
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.
 
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