Your experiences matter: why My Neuro Survey is so important

Sam Mountney, Policy & External Affairs Manager at The Neurological Alliance, shares his thoughts:

There is a real opportunity to bring about much-needed improvements to the care and support available to people with neurological conditions, but we can’t do it without you. We need your help to know what is happening on the ground in our neuro community.

Introducing My Neuro Survey

After over a year of planning and months in the making, I’m delighted to be able to announce the launch of their 2021/2022 national survey of people with neurological conditions – My Neuro Survey.

It’s not just the name that is new for 2021/22, for the first time the survey is UK-wide and includes a version specifically for children and young people. This means the survey is open to everyone in England, Scotland, Wales and Northern Ireland with a neurological condition or who is awaiting a diagnosis.

The survey is open from 25th October until 14th January 2022. It’s the largest of its kind, and there are more ways than ever to get involved.

You can fill out the survey online, request a paper copy including large print and easy read versions or complete over the phone in 150 languages. All these options are available here.

Your experiences matter

When the last survey took place in 2018/19 I was working at one of the Alliance’s member charities.

I know from personal experience that your responses were vital in mapping experiences of care and highlighting regional variation in health and care services as well as amplifying the importance to people with neurological conditions of improvements in care and support.

As the Policy and External Affairs Manager at the Alliance, this time around I’m doing everything I can to ensure your experiences are central to our campaigns in the years to come. I’m committed to using your responses to bring about positive change for the one in six people who live with a neurological condition in the UK. This commitment is shared by all our member organisations and survey partners.

Building back better

My Neuro Survey is more important than ever. Given what we know about the ongoing impact of COVID-19 on people and services, the survey includes questions specifically about the impact of the pandemic on your treatment and care.

As the health system looks to recover from the pandemic, there is a real opportunity to bring about much-needed improvements to the care and support available to people with neurological conditions. We know that neurological services and people with neurological conditions have been hit hard by COVID-19, but many issues have been around since long before the pandemic.

Making the case for change is what we do at the Alliance, but we can’t do it without you. We need to know what is happening on the ground in our neuro community. The survey is an important opportunity for us to listen to the people we work for and the community we represent – you!

The more responses we receive, the louder we can campaign for change.

Please get involved today. Fill out My Neuro Survey here or help us reach more people and share the survey on Facebook, Twitter and Instagram with the hashtag #MyNeuroSurvey.

Thank you. Together we’re stronger.