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#MyNeuroSurvey: your support is helping to improve neuro services

Thank you to everyone affected by neurological conditions who took part in My Neuro Survey, our UK-wide survey of people with neurological conditions.

More than 8,500 people across the UK shared their experiences. Thank you to everyone who told us about their experiences of life with a neurological condition, who shared the survey with family and friends or promoted the survey online.

We’ll be sharing the results publicly in the early summer with a campaign calling for changes to improve treatment, care and support.

This campaign will be shaped by people with and affected by neurological conditions and our member groups and organisations. Find out more.

Next steps

My Neuro Survey is now closed. We will use the data to lobby government and healthcare providers, including NHS bodies, to commission, fund and improve care and services for people with neurological conditions. The results are now being analysed will be collected into a report which will form the basis of our campaigning for the next two years – the report will be published in June 2022.

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. 

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 help create real change. Thank you. 

Frequently asked questions

What questions does #MyNeuroSurvey ask?

The survey will ask you 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 impact of COVID-19 on your treatment and care
Previous survey data has been used to create real change:
In major campaigns – Many Alliance Members (over 80 organisations) use the condition specific data to underpin their campaigning and inform their strategy.
To make the case for new resources – Sue Ryder used the data to support the business case for creating new centres.
To improve services – The data has been presented to a wide range of regional groups to inform service improvement, including:
Over 200 GPs in commissioning groups
Brighton and Sussex University Hospital Trust
The National Hospital for Neurology and Neurosurgery
Frimley Care
St George’s Hospital, London
To highlight the needs of all people with neurological conditions – Baroness Gale recently used the data in the House of Lords to show how neurological care and support varies across the country.
To put people with neurological conditions at the centre of professional practice – The data is presented to specialist doctors and other health care professionals including The Association of British Neurologists and the British Neuropsychiatry Association, providing unique insight.

Who can take part?

Anyone with a neurological condition (or awaiting diagnosis) in England, Scotland, Wales or Northern Ireland can take part. A nominated representative, such as a parent, guardian or carer can fill out the survey on behalf of someone with a neurological condition.

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.

For adults, children and young people

There will be 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).

If your child has a neurological condition, you can fill out the young persons’ survey with them or on their behalf.

How can you take part?

You will be able to fill out the survey online.

Alternatively, you can can fill out the survey over the phone by calling our survey partners, Quality Health, on Freephone 0800 783 1775.

You can also call this number to:

  • Ask for a paper copy of the survey to be sent to your address in the post (a Freepost envelope will be included)
  • 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.

When will you be able to take part?

The survey will open online on 25th October 2021 and close on Sunday 6th February 2022.

How will the survey data be used?

We will use the data to lobby government and healthcare providers, including NHS bodies, to commission, fund and improve care and services for people with neurological conditions. The anonymized results will be collected into a report which will form the basis of our campaigning for the next two years – the report will be published on our website. See a previous report here.

Will the survey be anonymous?

Yes. The survey is completely anonymous. It will not be possible to identify individual participants from their responses. The survey is being carried out by health consultancy Quality Health, a specialist health and social care consultancy with extensive experience of running patient surveys in the NHS.

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.

Ready to fill out #MyNeuroSurvey?

My Neuro Survey has now closed. Sign up to receive updates from us about other ways to get involved and follow us on Facebook, Twitter and Instagram to stay up-to-date.

Know someone with a neurological condition?

There are over 600 neuro conditions. If you don’t have one, you probably know someone who does – your friend, your loved one, your neighbour. Please tell everyone you know about My Neuro Survey and share this page (with the hashtag #MyNeuroSurvey if you’re on social media) to help us reach more people with neurological conditions, or awaiting diagnosis.