First UK Neuro Forum meeting

This big step comes after years of campaigning the government to #BackThe1in6. The campaign led by the Neurological Alliance and supported by over 100 organisations, including Dystonia UK, highlighted that 1 in 6 people in the UK live with a neurological condition. The campaign called on governments across the UK to set up a focussed group – a Neuro Taskforce – to sort out some of the biggest problems people face, like long waits for treatment, not enough mental health support and not getting the right information when they’re first diagnosed.

Find out more about the #BackThe1in6 campaign on the Neurological Alliance's website.

How will the UK Neuro Forum help?

The UK Neuro Forum is a new group that’s bringing together people from the NHS, charities and those living with neurological conditions to tackle some of the big problems they all face. It’s being led by people who are directly affected, and the idea is to focus on the areas where working together across the UK can really make a difference.

They’re hoping to fix things like the unfair differences in care depending on where you live, and to push for services that are more focussed on what people actually need.

What happened before the first meeting?

Before the first UK Neuro Forum meeting in March, Dystonia UK attended a workshop to help shape what the Forum should focus on. We wanted to make sure the needs of people living with dystonia were properly understood.

We talked about things like making sure there are enough trained specialists to keep services running well in the future, making research more accessible – especially for lesser-known conditions like dystonia – and making sure people get support for every part of living with a neurological condition, including their mental health.

Additionally, along with other attendees, we agreed a need for better data on neurological conditions, smoother transitions from child to adult services, and tackling the differences in care people get depending on where they live. 

What happened at the first meeting?

The first meeting of the Forum was all about setting out how it’s going to work and figuring out where working together across the UK could really make a difference.

People from all four governments were there and each shared what’s happening in their part of the UK. This included things like creating a new strategy for people with acquired brain injuries, a large NHS programme in England to improve neuroscience services and a review of how neurology services are working in Northern Ireland.

Find out more about the first UK Neuro Forum meeting on the Neurological Alliance's website.

Victoria Wareham, Director of Operations & Development at Dystonia UK, said:

"After many years of determined campaigning, we are pleased that the government has committed to establishing the first ever UK Neuro Forum. This is a significant and much-needed step towards raising the profile of neurological conditions and driving meaningful, UK-wide change.