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Support #MyNeuroSurvey and help improve neuro services

1. Visit My Neuro Survey (myonlinesurvey.co.uk) OR

2. 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

3. Tell everyone you know about #MyNeuroSurvey – share the hashtag on social media/
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, like GBS or CIDP.
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.

Make a real difference

Data from previous surveys has been used to improve services in hospitals, develop new specialist centres, and spark debate in Parliament. The survey takes around 20 minutes to complete. Please take part and make your voice heard. Thank you 

Alternative formats

Participants can fill out the survey online. Alternatively, participants can fill out the survey over the phone by calling our survey partners, Quality Health, on Freephone 0800 783 1775. You can fill it out over the phone in any language.

They can also use this number to:
• ask for a paper copy of the survey to be sent to their address in the post
• ask for a large print copy of the survey
• ask for an Easy Read version of the survey
• hear and complete the survey in over 150 languages

Paper copies of the survey will also be available in some neurology clinics.

If you would like copies of the survey to share with your followers, please let us know.

Easy Read

Please email miranda.lloyd@neural.org.uk if you would like information about the survey in Easy Read format.

The survey will be available in Easy Read format.

The survey is completely anonymous.

It will not be possible to identify individual participants from their responses. Some people worry that their opinions will be revealed to their health team and it could affect their care. This is not correct.

The survey is carried out by a third party (Quality Health) and they must keep the information confidential by law.

What is #MyNeuroSurvey?

My Neuro Survey is the largest survey of people with neurological conditions in the UK. GAIN is proud to be a member of The Neurological Alliance – a coalition of over 70 organisations campaigning together to improve treatment and care for people with neurological conditions. The Neurological Alliance runs the National Neurological Patient Experience Survey (now called ‘My Neuro Survey’) every two years. My Neuro Survey closes on 14th January 2022 – please complete the survey before then.

What questions does #MyNeuroSurvey ask?

Over 10,000 people took part in the 2019 survey.

The COVID-19 pandemic has placed additional strain on already overstretched services – it’s never been more important to make your voice heard.

The survey asks questions about whether you are getting the treatment and support you need, including questions about:

• Diagnosis

• Treatment and therapy

• Access to specialists

• Social care

• Employment and financial support

• Support for mental wellbeing

• The impacts of COVID-19 on treatment and care

Data from previous surveys has been used to influence government and health service policy, improve services in individual hospitals, develop new specialist centres and spark debate in Parliament.

Who can take part?

Anyone with a neurological condition (or awaiting diagnosis) in England, Scotland, Wales or Northern Ireland can take part.

There are two versions of the survey – one for adults with neurological conditions (or awaiting diagnosis) and one for children and young people under 18 with neurological conditions (or awaiting diagnosis). Parents, guardians, carers, friends and family of adults, children or young people with a neurological condition can fill out the survey with them or on their behalf. 

UK wide

The 2021 survey is UK wide and run in partnership with the Neurological Alliances of Scotland and Wales and the Northern Ireland Neurological Charities Alliance (niNCA) for the first time. 

How will the survey data be used?

The Neurological Alliance, the Neurological Alliances of Scotland and Wales and the Northern Ireland Neurological Charities Alliance (niNCA) and our members will use the data to campaign for improved treatment, care and support for people with neurological conditions. In particular, we will launch a report outlining the results and our recommendations for change in April 2022. The results will be shared with the media, government and healthcare bodies to improve care and campaign for better services for people with neurological conditions.

Will the survey be anonymous?

Yes. The survey is completely anonymous. It’s not possible to identify you from your responses. Some people worry that if they say something is wrong, their opinions will be revealed to their health team and it could affect their care. This is not correct. The survey is carried out by a third party (Quality Health) and they must keep the information confidential by law.

 

Thank you for choosing to support My Neuro Survey.

The more responses we receive, the more effective we can be in campaigning for change and transforming health and social care for everyone with a neurological condition. Your support will help improve services for people with neurological conditions across the UK. If you have any questions or need more information, please email miranda.lloyd@neural.org.uk