A teaching assistant living with Multiple Sclerosis (MS) from Croydon has visited the Houses of Parliament to call on all UK Health ministers for the radical transformation of neurological services.
Rebbecca Robinson, 36, lives with a range of Multiple Sclerosis symptoms, including brain fog, vertigo, spasms, cognitive overload, heat sensitivity, memory loss and fatigue.
On June 8, Rebbecca attended the parliamentary event hosted by the Neurological Alliance – a coalition of organisations supporting people with neurological conditions in support of the #BackThe1in6 campaign.
The #BackThe1in6 campaign urges people across the UK to sign a petition to all UK Health Ministers, 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.
Whilst at the event, Rebbecca spoke to MPs and peers about the new findings from My Neuro Survey – which asked 8,500 people living with neurological conditions about their experiences accessing treatment, care, and support.
Figures revealed that 81 per cent of adults and 89 per cent of children and young people said their condition had made their mental wellbeing worse.
Rebbecca said: “It’s great to attend this important event that represents all those living with a neurological condition.
“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.”
Rebbecca’s auntie, Pat, who lives with a neurological condition that affects her legs, feet, and hands went to the event with Rebbecca.
Pat added: “The most important thing for me, is after diagnosis, you need support and information to help process the diagnosis.
“Knowledge is power.
“It doesn’t just end on that day you’re diagnosed, everything’s stripped away overnight and knowing where to get that support is so important. All the information about my condition, I’ve had to find myself.
“For me, that’s the missing piece of the jigsaw, the middle man who can tell you where to get support.
“Neurologists and consultants are so stretched, and it doesn’t need to be them who tells you everything – that support needs to be there in another form.
“There needs to be someone who can point you to these services and support.”
Rebbecca says going to the event with her auntie is a “clear example” of what it’s like to have to different neurological conditions.
Rebbecca added: “It gives people a really different perspective of what people go through.
“It’s so important for us to have a strong support system.”
Georgina Carr, Chief Executive at the Neurological Alliance, says: “We’re so grateful to Rebbecca and Pat for supporting our #BackThe1in6 campaign.
“Together they helped us to raise vital awareness of the impact of living with a neurological condition and could speak to our report – that 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 one in six 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.”
Comments: Our rules
We want our comments to be a lively and valuable part of our community - a place where readers can debate and engage with the most important local issues. The ability to comment on our stories is a privilege, not a right, however, and that privilege may be withdrawn if it is abused or misused.
Please report any comments that break our rules.
Read the rules here