Coproduction week: working together to back the 1 in 6

06/07/2022

Rhys Holmes, who has the neurological condition superficial siderosis, joined The Neurological Alliance’s coproduction group to help develop the #BackThe1in6 campaign and help make the views and experiences of people with neurological conditions central to everything we do.

For Coproduction Week (4 – 9 July 2022) Rhys tells us what being part of the group has been like:

Our coproduction group was put together to create a campaign using the results of the 2021/22 My Neuro Survey where over 8,500 people with neurological conditions (or their carers or guardians) from England, Wales, Scotland, and Northern Ireland, told us about their experience of care, treatment and support.

Sharing experiences

The coproduction group is made up of 12 people from throughout the UK, who have a range of different neurological conditions and backgrounds. We meet every Thursday via Zoom to discuss the findings of My Neuro Survey, bounce ideas and opinions off each other, and share our experiences to help shape the campaign.

As well as looking at the data from the survey, we looked at the three most common areas that respondents felt are underperforming or need improvement. These were:

• Mental wellbeing support
• Prompt access to treatments and specialist services
• And information and support at diagnosis.

Together, we worked on the key messages of the campaign, and decided what the campaign should be asking for.

Through the coproduction group, the name Together for the 1 in 6 was chosen for the report on the survey results. This derives from the fact that 1 in 6 people in the UK have a neurological condition. All four nations are coming together to push for much-needed improvements in neurological care.

Developing a clear campaign

From this, the #BackThe1in6 campaign was developed, and has started with a petition 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.

Providing personal insight

I can definitely say that the standard consistency of care needs to be improved across the UK. I had a brain tumour at eight years old, developed hydrocephalus (a build-up of fluid on the brain) at 11. I’ve had multiple bouts of meningitis, at least 20 different neurosurgical procedures, and a cerebrospinal fluid leak. I’m now battling superficial siderosis.

I’ve been treated in both Wales and England, via the NHS and privately, as a child and as an adult. I have had a range of experiences. It really is a postcode lottery in terms of the care that’s received.

Offering a first-hand perspective

I know my symptoms, and what does and doesn’t help, because I’m the one living with my condition every day. Doctors and politicians, the people who have to make decisions about treatment and care, don’t necessarily have that experience.

So the aim of the game – and part of the #BackThe1in6 campaign – is to tell them what it’s like from a first-hand perspective. The coproduction group is helping to make sure our voices are loud and clear all the way through the campaign to get the policymakers to improve the standard of care.

Knowing you’re never alone

One of the biggest things I’m taking from being part of the coproduction group is that I am not the only one who is pushing to make things better. I’m not the only one who believes there is huge need for improvement in neurology care.

Rhys Holmes, coproduction group member.

Knowing you’re not alone is so enlightening after feeling isolated in fighting battles to improve neurology care. I’ve met some fantastic people and learnt to use some new computer programs.  I’m looking forward to helping others in the group learn how to navigate Twitter.

A louder voice: backing the 1 in 6 together

The best thing is that everyone is on the same page. The issues discussed are reflective of what everyone in the group has experienced. There’s power in numbers. We are all individuals, but together we are a much louder voice. There are over 600 different neurological conditions, but we all have a common goal: to improve the standard of care. Please back the 1 in 6 and sign our petition now.

Guest blog by Rhys Holmes (@RhysHolmes).

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