Together we are stronger: coproduction and creating real impact


Coproduction group coordinator Jess Mansel

Our coproduction coordinator Jess Mansel describes how working with coproduction volunteers is shaping our campaign to improve neuro services.

This week (4 – 9 July 2022) is Coproduction Week, and the theme is impact.

We’ve been working with a coproduction group of 12 people who are affected by neurological conditions. Together, they are sharing their lived experiences, knowledge and skills with us to shape and co-create our campaign: #BackThe1in6.

Representing unique voices

Our coproduction group volunteers come from across England, Wales, Scotland and Northern Ireland. Volunteers have different types of neurological conditions including rare conditions. The group also includes people who are often underrepresented in terms of gender, sexuality, ethnicity or age.

Everyone is helping to make sure the campaign we’re creating together represents and recognises the distinct voices and unique experiences across the neuro community.

Listening to the neuro community

People in the group share their experiences, and also make sure people who aren’t in the room are heard.

To create #BackThe1in6, coproduction volunteers listened to what the wider community told us through the 2021/22 My Neuro Survey, which had over 8,500 responses. And they continue to keep our shared aim in mind: to improve care, treatment and support for all people with neurological conditions.

Together, we can be sure our campaign is calling for the changes that matter the most to people with neurological conditions.

Strengthening our campaign

Coproduction volunteers have helped to shape the report on the results of the survey, making sure the voices of real people are front and centre and can be heard throughout.

Now everyone, including decision-makers, can better understand realities of living with a neurological condition, and how critical and urgent it is to work together and take action.

Creating meaningful goals

Coproduction volunteers also picked out common themes in the survey, and identified goals.

These were:

  • Anyone with a neurological condition – wherever they live in the UK, whatever neurological condition they have, will get the right treatment, support and care at the right time.
  • Nobody will be left in the dark without information and support when they’re diagnosed.
  • Nobody will have to face delays when they need life-changing treatment and care.
  • Support for mental wellbeing will be a priority.
  • And the post code lottery that affects so many people with neurological conditions will be a thing of the past.

These goals have helped to shape the campaign’s call to action: calling on all UK governments to come together to solve common problems identified by the survey and set up a UK-wide Neuro Taskforce to improve services for people with neurological conditions.

Working together to create the future we all want to see

Apart from working with and learning from a coproduction group of inspiring and talented people, the best part for me is seeing everyone’s generosity and drive to co-produce a campaign together. This is a first-time achievement for The Neurological Alliance.

Jess Mansel, coproduction coordinator

Our colleagues, member organisations, coproduction group and the wider neuro community came together to create a campaign with our community, for our community. Together we are stronger. Together we have real impact. Read more about our coproduction group from one of our coproduction volunteers.

Together we are stronger

Please act with us and #BackThe1in6.

Join us in calling on all UK governments to set up a UK-wide Neuro Taskforce to improve services for the one in six people living with neurological conditions across the UK.

Sign the petition now.