My Neuro Survey: together we can transform health and social care

Support #MyNeuroSurvey

A group of six figures. All the figures are purple, except for one. They stand out from the crowd. Text reads: one in six of us has a neurological condition.

1 in 6 of us has a neurological condition – that’s any condition that affects the brain, spine and/or nervous system.

Stroke. Dementia. Epilepsy. Cerebral Palsy. Migraine. Ataxia. Or over 600 other conditions.

If you don’t have a neurological condition, you probably know someone who does – your friend, your loved one, your neighbour.

Improve care, treatment and services

When you have a neurological condition, the quality of care and support available can vary.

It can take a long time to get a diagnosis and access to the right treatment, care and support.

Every two years The Neurological Alliance runs My Neuro Survey to give an accurate picture of the state of neurological care, treatment and support across the country and improve services.

This year, when thousands of people have been impacted by the COVID-19 pandemic and many services have ground to a halt, it’s even more important.

Help make the case for change

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.

We need your help – this year, we are asking all organisations, charities and community groups 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 My Neuro Survey with your networks, shout about it on social media and promote My Neuro Survey as widely as possible.

Be part of the UK’s largest survey of people with neurological conditions

  • 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.
  • For the first time My Neuro Survey is UK wide and includes a version specifically for children and young people with neurological conditions.

When you register your interest in supporting the survey, we will send you a campaign pack with a unique link to the survey and resources to help you promote the survey online, in print and through social media.

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

It takes around 20 minutes to complete.

Be heard

My Neuro Survey is an opportunity for people with neurological conditions (and those awaiting diagnosis), their families, carers and loved ones, to share their experiences and be heard.

Anyone can be affected by a neurological condition, at any age, at any time.

In 2019, 10,000 people took part. Results from previous surveys have been used to improve services in hospitals, develop new specialist centres, and spark debate in Parliament.

Achieve health equality

The more responses we receive, the more effective we can be in campaigning for change.

We want My Neuro Survey to accurately reflect the diversity of society in the UK and be inclusive of all people with neurological conditions.

Please connect us with as many people as possible. We’re particularly keen to hear from people with neurological conditions who are typically not invited to take part in research and people who have limited or no access to services.

This could include black, Asian and minority ethnic groups, the LGBTQI+ community, people with learning difficulties and people for whom English is a second language, refugees or asylum seekers.

We will continue to campaign until everyone with a neurological condition has access to high quality joined up care at every stage of life.

Previous survey data has been used to create real change: In major campaigns – Alliance members including FND Hope UK use the condition specific data to underpin their campaigning. 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.

What’s in #MyNeuroSurvey?

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

“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

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.

Email miranda.lloyd@neural.org.uk to register your interest and receive a unique link to share with your followers and a campaign pack to help you promote the survey online, in print and through social media.

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, which they can use to support their own campaign work.

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?

Get in touch. Email miranda.lloyd@neural.org.uk to request a campaign pack. You will receive the campaign pack on 11th October 2021.