Supporting #MyNeuroSurvey

Figure in the middle of a circle of arrows. Each of the three arrows has a word on it: care, treatment, support. Title text reads: transforming quality-of-life for everyone with a neurological condition.

Getting the right neurology treatment, care and support at the right time matters.

We know that 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 levels of variation in neurology service provision across the UK and not everyone with a neurological condition has access to the same high quality, joined up care.

Making the case for change is our biggest challenge.

That’s why we need your help – we’re asking all Alliance members to do 3 things to support My Neuro Survey:

  1. NOW – register your interest in supporting My Neuro Survey to receive a campaign pack including a unique link to the survey and resources to help you promote the survey online, in print and through social media.
  2. NOW – let us know why you’re supporting My Neuro Survey. This will help us promote the survey and show why it is so important when it comes to making the case for change.
  3. FROM 25th October – 6th February 2022– share, promote and shout about My Neuro Survey.

Neurology services are more stretched than ever and your support is more important than ever.

We’re delighted that for the first time My Neuro Survey is UK wide.

The survey includes a version specifically for children and young people with neurological conditions.

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

It takes around 20 minutes to complete.

What is #MyNeuroSurvey?

My Neuro Survey is the largest patient experience survey of people with neurological conditions.

My Neuro Survey is the biggest single source of patient experience data when it comes to commissioning services for people with neurological conditions and lobbying to improve treatment, care and support for people with neurological conditions.

The Neurological Alliance runs the National Neurological Patient Experience Survey (now called ‘My Neuro Survey’) every two years.

“In the absence of robust data from the NHS about the provision of services to people with rare neurological problems, My Neuro Survey not only provides a patient view, but gives much needed insights into what services people with ataxia are, and aren’t, able to access from the NHS, and their quality in the eyes of patients.”

Sue Millman, Chief Executive, Ataxia UK
& Alliance Trustee

Over 10,000 people took part in the 2019 survey. Given the impact of the COVID-19 pandemic on people with neurological conditions and on neurology services, it’s even more important that Alliance members support the survey and encourage everyone with a neurological condition (or awaiting diagnosis) to take part.

The survey asks participants questions about whether they are getting the treatment and support they 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.

Previous survey data has been used to create real change: In major campaigns – Many Alliance Members use the condition specific data to underpin their campaigning and inform their strategy. To make the case for new resources – Sue Ryder Care 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.

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.

For adults, children and young people

Three heads surrounded by outward pointing arrows. Text reads: reaching everyone with a neurological condition.

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).

The parents or guardians of children or young people can fill out the young persons’ survey with them.

How can people take part?

Participants will be able to 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.

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
  • Hear and complete the survey in over 150 languages

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

When will people be able to take part?

The survey opened online on 25th October 2021 and will 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. All participating organisations will get a copy.

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 support #MyNeuroSurvey?

Register your interest to request a campaign pack. You will receive the campaign pack in the week commencing 11th October 2021.

Need more information?

Learn more about My Neuro Survey:

What’s in it for your organisation?

Making the case for joined up care

Helping to achieve health equality

How has previous survey data been used?

Who is The Neurological Alliance?

Already supporting the survey? Send a testimonial.

Need an easy reference? Download this information as a PDF.