#BackThe1in6: coproduction, collaboration and campaigning to create the Neuro Taskforce

05/07/2023

The Neurological Alliance’s coproduction group of people affected by neurological conditions has been vital to our work over the last year. They have been a driving force behind the development of the #BackThe1in6 campaign and the petition calling on all UK governments to work together to create a Neuro Taskforce to improve workforce and services for people affected by neurological conditions. 

Here, they show us what happened when the petition was handed in and share their thoughts on working together and the future of the Neuro Taskforce.

Cowritten by Debbie, Jeanette, Jeanie, Rhys, Rebbecca and Trishna for Coproduction Week 2023 (3 – 7 July 2023).

Working together to #BackThe1in6

We have been involved in The Neurological Alliance’s coproduction team since May 2022. We’ve worked with each other to take forward the issues raised in My Neuro Survey to various bodies and develop the #BackThe1in6 campaign.

On 5 June 2023, this culminated in us being able to hand in the petition, signed by over 19,000 people, to the Department of Health and Social Care and meeting with a number of MPs at a parliamentary drop-in event.

“I became involved in the coproduction group with the hope that the #Back1in6 campaign would develop conversations and awareness of the impact that neurological conditions have on one in every six people in the UK and their families.”

Jeanie, coproduction group member living with hereditary spastic paraplegia.

Meeting up in London

We met outside a café near the Department of Health and Social Care. It was great to meet face-to-face with people we had only previously seen on Zoom meetings. We had designed T-shirts to wear on the day and spent some time writing personal messages on them.

“I was pleased and proud to be sharing a personal message with others. Mine read: I know from personal experience that a Neuro Taskforce is needed.’“

Debbie, coproduction group member and traumatic brain injury survivor.

Handing in the petition and heading for Parliament Square

We handed in the petition at the Department of Health and Social Care, then walked together to Parliament Square. We looked and felt like a team, united in our mission for everyone affected by neurological condition. We attracted a lot of attention from passers-by and had our photographs taken, which were later used in press coverage of the day.

We had a quick break for lunch (in the café of the Supreme Court – the security there is intense!) and then headed for the Boothroyd Room at the Houses of Parliament, where we were holding a drop-in event for MPs, and where the #PicsForThe1in6 mosaic picture would be displayed.

#PicsForThe1in6: many hands that work together

Back in May, we asked people with neurological conditions and their friends and families to submit their pictures to a collective mosaic picture. Over 300 people submitted their pictures, and many of you shared your experiences too. It was really good to see so many people get involved.

“I am part of the coproduction group and really enjoyed the planning and design of the mosaic poster. We worked as a team to produce a final piece that everyone agreed with. It was challenging but extremely rewarding when we saw our ideas come together.”

Jeanette, coproduction group member living with functional neurological disorder.

Together with graphic designer Phoebe, who also has a neurological condition, we worked together to decide on a design that would indicate that anyone can be affected by a neurological condition, no matter their age, gender, race or ethnicity.

Creating the final image was difficult. It took a lot of discussion and a whole range of ideas. Eventually we chose a design that shows six hands, including a child’s hand, reaching towards the centre. Hands that work together and cooperate are able to achieve more than a single hand on its own! The final result, presented as a short film, represented a wide range of people and neurological conditions from across the UK who would benefit from the work of a Neuro Taskforce.

At Parliament

It felt so good to be taking the petition to Westminster! It really put an official stamp on our mission to improve neurological care across the UK, showing that we, the neurological community, are serious about making this happen. Thank you to Rachael Maskell MP and Christine Jardine MP for sponsoring the drop-in event.

It was such a good opportunity to share our experiences with politicians – many of whom attended because they had received letters from their constituents – and representatives from The Neurological Alliance’s member organisations. Coproduction member Rebbecca, who has multiple sclerosis (MS), gave a brilliant speech about her experiences and difficulties in getting care, which so many of us could relate to.

“I was able to share my own experiences to all that attended the parliamentary event and it was so nice to have so many people be touched. I hope that from the event MPs are able to see the difference their support will make in having a Neuro Taskforce that recognises the individual needs of someone with a neurological condition.”

Rebbecca, coproduction group member living with multiple sclerosis

Hopes for the future

We hope the #BackThe1in6 campaign and the petition will be the gateway for a Neuro Taskforce to be developed. We need the taskforce to provide a more comprehensive and cohesive strategy to deal with the impact a neurological condition has on the individual and society as a whole.

“I hope a Neuro Taskforce can help to pinpoint those often small issues, that can escalate. The sort of things that often get missed, or dismissed as unimportant, but as a patient these mean the most, as we want to get the care to fully manage our conditions.”

Rhys, coproduction group member living with superficial siderosis.

Since the event, MPs have been tabling a range of parliamentary questions, calling on the UK government to set out their plans to improve care for people affected by neurological conditions. This is a great step forward.

Over the summer, we will work together to continue this pressure and develop plans to show what a working Neuro Taskforce could look like and how this could be implemented.

Thank you

Thank you to everyone who has worked on and supported the #BackThe1in6 campaign so far: everyone in the coproduction group, everyone who shared their expertise and time in the campaigns working group, everyone who volunteered to tell their story, everyone who took the time to provide feedback, everyone who signed the petition, everyone who wrote to their MP, and everyone who shared a tweet or social media post. Together we are stronger. Together we #BackThe1in6.