Share your experiences with #MyNeuroSurvey
The 2021/22 national neurological survey is coming. Get ready to take part.
Share your experiences. Make your voice is heard. Transform quality-of-life for people with neurological conditions across the UK. Anyone living with a neurological condition in England, Scotland, Wales or Northern Ireland can take part.
One in six of us has a neurological condition – that’s any condition that affects the brain, spine and/or nervous system.
This could be 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.
Get ready to transform quality of life
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.
Make a real difference
We share the results with the media, government and healthcare bodies, including NHS commissioning groups, to improve care and campaign for better services for people with neurological conditions. See an example of a previous survey report here.
Previous survey results have been used:
In major campaigns:
Member organisations such as FND Hope use the condition-specific data to underpin their campaigning.
To make the case for new resources:
Sue Ryder Care use the data to support the business case for creating new clinical centres.
To improve services:
The data has been presented to a wide range of regional groups to inform service improvement, including:
- Over 200 GPs from Sheffield based commissioning groups
- Princess Royal – Brighton and Sussex University Hospital Trust
- 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, Chair of the All Party Parliamentary Group for Parkinson’s, recently referred to the data as an important indicator of unwarranted variation as part of a House of Lords Debate on the impact of the pandemic on people with neurological conditions.
To put people with neurological conditions at the centre of professional practice:
The data is presented to the Association of British Neurologists and the British Neuropsychiatry Association annual conferences, providing unique insight into the impact of neurological conditions.
For all people living with neurological conditions
Neurological conditions can affect anyone, from any walk of life, at any age, at any time. The more responses we receive, the more effective we can be in campaigning for change and securing high quality, joined up neurological care for all. This year, there is a version of the survey specifically for children and young people too.
The 2021 survey is UK wide and run in partnership with The Northern Ireland Neurological Charities Alliance, The Neurological Alliance of Scotland and Wales Neurological Alliance for the first time.
It’s an opportunity for people with neurological conditions and their loved ones to share their experiences and be heard.
Pledge your support
My Neuro Survey will open on 27 September 2021.
We need as many people with neurological conditions as possible to complete the survey, and as many organisations as possible to publicise the survey and make sure it reaches everyone living with a neurological condition.
We are particularly keen to hear from anyone who can connect us with people with neurological conditions who are not typically invited to take part in research or who have limited or no access to health and social care services or support, to make My Neuro Survey accurately reflects the diversity of society in the UK and is inclusive of all people with neurological conditions.
To pledge your support or find out more please email email@example.com.
Frequently Asked Questions
How is data from the survey used?
We use the data collected to lobby government and healthcare providers, including NHS bodies, to commission, fund and improve care and services for people with neurological conditions.
Data from previous surveys has been used to improve services in individual hospitals, develop new specialist centres, and spark debate in Parliament.
When will the survey open and close?
My Neuro Survey will open on 27 September and close on 17 December 2021.
Where will people be able to fill out the survey?
From 27th September, participants will be able to fill out the survey online, on paper in some neurology outpatients clinics, and on the phone. We will circulate the URL when the survey is open.
How long will the survey take?
The survey will take around 20 minutes to complete.
Is the survey available in other languages or formats?
Large print and paper copies of the survey will be available on request by calling our survey partners, Quality Health on 0800 783 1775 (Freephone). Quality Health can also support participants to complete the survey over the phone, in English or any another language.
Who can take part?
Anyone with a neurological condition in England, Scotland, Wales or Northern Ireland can take part. The parents or guardians of children or young people with a neurological condition can fill out the young persons’ survey with them.
Does it really make a difference?
Yes. My Neuro Survey is the largest patient experience survey of people with neurological conditions – and the biggest single source of patient experience data when it comes to commissioning services for people with neurological conditions and lobbying for positive change. Want technical details? View a summary of the findings of the 2019/2020 survey here.
It makes a huge difference.
The 2019 survey received over 10,000 responses from people with neurological conditions. This was only made possible because people took the time to take part and organisations did everything they could to publicise the survey and encourage people to take part. Pledge your support now.