We are listening. Share your experiences. Older sikh man in conversation with his daughter. Both are smiling.

My Neuro Survey: learn more about our coproduction group

Coproduction is all about bringing together people who have different skills and experiences, including those who have a personal connection to, or lived experience of neurological conditions, to find the best solutions.

Thank you to everyone who offered to take part in our coproduction group for people affected by neurological conditions. Applications closed on Sunday 27 March 2022. We will be in touch with everyone in early April.

What is our coproduction group?

For our coproduction group we’re looking for people with and affected by neurological conditions to work alongside Alliance staff and member organisations and help shape a new campaign.

The campaign will be informed by the responses to My Neuro Survey, the largest patient experience survey of people with neurological conditions in the UK. It asks whether people are getting the care and support they need for their condition and includes questions on things like access to specialists, social care, employment and financial support, mental wellbeing and the impact of COVID-19 on treatment and care. More than 8,500 people have shared their experiences through the survey.

It’s vital that people with and affected by neurological conditions are listened to, and that any campaign reflects the change people with neurological conditions want to see. This is where the coproduction group comes in.

What is The Neurological Alliance?

The Neurological Alliance is a group of over 80 organisations including charities and professional bodies with a shared commitment to improving treatment, care and support for people with neurological conditions.

Our members range from small, volunteer-led organisations to large household names and everything in-between. You can find out more about our members here.

We work together to gather evidence, including through My Neuro Survey, and to campaign on the things that matter most to the neurological community.

Find out more about us here.

What does the role involve?

As part of the coproduction group you will share your personal experiences, your ideas and any other skills to help us:

  • Shape the look, feel and messaging of the My Neuro Survey launch and campaign
  • Develop  recommendations on how public policy needs to change in order to improve treatment and care.
  • Understand the data from My Neuro Survey to make sure the campaign reflects people’s experiences.
  • Decide the best way to promote the campaign to people with neurological conditions, decision makers and the public.
  • Work with the Alliance and our membership to design campaign content and materials.

What we’re looking for

We’re looking for people with and affected by neurological conditions who are passionate about improving treatment, care and support for the neuro community.

You don’t need any previous experience of coproduction or campaigns as we’ll support everyone to take part.

You might also be interested in campaigns, data or anything else involved in planning a national campaign. You might be involved in a group that connects people in the neuro community or you might have a following on social media. Everyone has a part to play and can bring something unique to the table. Get in touch, we’d love to hear from you!

To make sure everyone gets the best out of this experience, you’ll need to:

  • Share our values and understand that we are representing a diverse range of people affected by neurological conditions. You can find out more about our values here.
  • Work as a team, respecting others, being sensitive to everyone’s needs and listening to different perspectives.
  • Share your experiences, views and skills in the group and help us make decisions.
  • Tell us what you need so we can support you to take part; whilst remembering others in the group might have different needs to your own.
  • Keep any personal information shared in the group confidential and follow any data protection guidance we give you, if and when necessary.

How will the group meet?

As a group, we will meet online so there is no travel involved.

We will probably use Zoom , a platform that allows us to meet online using video call, voice call or text chat. You can join using a smart phone, tablet or laptop or telephone. We might also use other things like email and Word documents to work together.

You might already use technology like this but if you’re unsure we can support you and make sure you’re comfortable.  Before the group meets, we’ll find out what everyone needs to take part and if we find the group wants to do things in a different way we’ll be flexible and led by what you want and need.

When will the group meet and how much time will it take?

The first online meeting will take place in March 2022 at a time and date that works best for the group. We’ll keep meeting online throughout the project which will last around 5 months. There is also an opportunity for the group to continue meeting and working together after the 5 months.

As a group we’ll decide when and how often we meet, how we work together, and how you want to stay involved. You can be as involved as much as you’d like.

As a rough idea there is likely to be a weekly meeting which may last 1 or 2 hours with short breaks. You might need 1 hour a week to read documents or think ahead before the meetings but we will give you plenty of notice and support to do that. 

We know that people are busy and you might not be able to attend all the meetings. This is not a problem. At the first meeting we will discuss other ways of contributing to the project and staying in touch between meetings. This could include emails or other ways to make sure all group members can get involved around other commitments.

What you could get out of being involved

This is an exciting chance to shape a UK-wide campaign. You can help make sure the campaign meets the needs of people with and affected by neurological conditions and makes a real difference to people’s lives. This is chance to create the changes we all want to see and help us make a better future for everyone.

Although we’ll be doing important work together, we will make our meetings informal and enjoyable! There will be time in every meeting for a tea break and a chance for the group to socialise and catch up.

This is also a great way to learn and share skills, network with others who have similar values and build relationships for any other work or projects you’re involved in.

Representing the whole neuro community

We’re looking for lots of different people to be involved. There are over 600 known neurological conditions, and we work hard to represent all people affected by them.

It’s important that we have people with a connection to different neurological conditions as part of the group, including:

  • Sudden onset conditions like stroke, traumatic brain injury, spinal injury, meningitis or Guillain-Barre Syndrome.
  • Intermittent conditions like epilepsy, migraine or cavernoma.
  • Progressive conditions like Parkinson’s disease, dementia, motor neurone disease or ataxia.
  • Stable with changing needs like Tourette’s syndrome, narcolepsy, fibromyalgia, transverse myelitis and cerebral palsy.

We also want to make sure that rarer neurological conditions and groups who are often underrepresented in research and coproduction are involved. These include people from Black, Asian and Minority Ethnic backgrounds and the LGBTQIA+ community.

Guidance and support

If you need any information or support to take part in this group, you can get in touch with info@neural.org.uk or call 01923 882590 and we will be in touch.

We’ll do all we can to support you to get involved.