Alliance campaigns for better treatment for the 1-in-6

A teaching assistant from Croydon who is living with relapsing multiple sclerosis has visited Parliament to call on all health ministers for the radical transformation of neurological services.

Taking campaign to parliament: Croydon teaching assistant Rebbecca Robinson at the Neurological Alliance event earlier this month

Rebbecca Robinson, 36, lives with a range of MS symptoms including brain fog, vertigo, spasms, cognitive overload, heat sensitivity, memory loss and fatigue.

She attended the parliamentary event hosted by the Neurological Alliance – a coalition of organisations, such as the MS Society, supporting people with neurological conditions – to support the #BackThe1in6 campaign.

There, she spoke to MPs and peers about the findings from My Neuro Survey – which asked 8,500 people living with neurological conditions about their experiences accessing treatment, care and support – that revealed the vast majority (81per cent of adults and 89per cent of children and young people) said their condition had made their mental wellbeing worse.

The lack of mental health support can make a neurological condition significantly worse, and leave people feeling isolated and withdrawn from social relationships and work.

Like Robinson, at least 1-in-6 people live with a neurological condition which affects the brain, spinal cord and nerves. Conditions like MS and epilepsy can impact anyone at any time, no matter their age, circumstance or gender. When you have a neurological condition, such as Parkinson’s, the quality of care and support you receive is vital.

Robinson was diagnosed with MS in 2018, while she was in the process of interviewing for her current job supporting children with special educational needs.

“It’s great to attend this important event that represents all those living with a neurological condition,” she said.

“I was so happy to be involved with the development of this campaign alongside a group of people living with a wide range of conditions. By coming together we heard about the similar difficulties we all face but also the differences in our care and support.

“The information from this survey is so important. It shows how some people get support for their condition while others don’t. It’s a postcode lottery for so many – there’s a clear difference between London and other areas. We can see where the gaps are, and how things could be improved – we now need action from the government to make these changes.”

As part of the #BackThe1in6 campaign, people across the country are being urged to sign a petition to all health ministers, at Westminster, Holyrood, Cardiff and Stormont, calling on them to work together through a Neuro Taskforce to set out their plans to improve treatment, care and support for people affected by neurological conditions. The Neuro Taskforce would bring together relevant departments, health and social care bodies, professional bodies, people affected by neurological conditions and the voluntary sector in all four nations of the UK.

Georgina Carr, chief executive at the Neurological Alliance, said: “Too many people are being left to struggle on alone.

“For years, people with neurological conditions have felt ignored, with public policy and service improvement for neuroscience under-prioritised. The tide is starting to turn, but we now need all four governments to work together to develop and resource clear plans to improve the lives of the 1-in-6 people in the UK who live with a neurological condition.

“They must urgently put together a Neuro Taskforce to make sure we have the right services in place for people with a neurological condition now and in the future.”

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News, views and analysis about the people of Croydon, their lives and political times in the diverse and most-populated borough in London. Based in Croydon and edited by Steven Downes. To contact us, please email
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