NEURO NEWS

The Government has announced a new UK-wide forum to find ways to improve care and support for people affected by neurological conditions.

The announcement follows a long-standing campaign led by The Neurological Alliance, together with The Neurological Alliance of Scotland, Wales Neurological Alliance and the Northern Ireland Neurological Charities Alliance, supported by over 100 organisations including Neuro Therapy Network.

The “Back The 1 in 6” campaign called on UK Governments to establish a Neuro Taskforce to address key challenges facing people affected by neurological conditions, including delays to treatment and care, a lack of mental health and wellbeing support, and insufficient information at the point of diagnosis. The campaign was underpinned by the experiences of over 8,500 people who responded to My Neuro Survey, the largest neurological patient experience survey in the UK.

The forum will unite clinical leaders, organisations, and people with lived experience of neurological conditions to tackle shared challenges. Shaped by those it serves, the forum will aim to drive real progress in areas where UK-wide collaboration is most impactful. It will aim to address unwarranted variation in access to care across the country, and drive person-centred care.

The Neuro Forum will hold formal, biannual meetings across the Department for Health and Social Care, NHS England, devolved governments, and Neurological Alliances of all four UK nations. This is the first UK-wide government forum focusing on services and support for people affected by neurological conditions. Work is underway to deliver the first forum meeting in early 2025, with a further meeting in the summer and ongoing meetings in the years ahead.

Andrew Gwynne, Minister for Public Health and Prevention, said:

“I am proud to welcome the launch of the UK Neuro Forum. This long overdue forum will help address common concerns and challenges experienced by people affected by neurological conditions, which are too often overlooked. This initiative will unite governments, clinical leaders and campaigners to tackle shared challenges and drive UK-wide collaboration to improve gaps in treatment and care of people with conditions that impact the nervous system.”

Leaders of the four UK Neurological Alliances said: 

“After years of campaigning with our members and community, we’re delighted the Government has announced this landmark initiative, which has the potential to improve services for people affected by neurological conditions now and in the future. Taking a UK-wide approach to developing solutions and sharing best practice across systems and nations is a positive step towards improving services for everyone affected by neurological conditions. 

"The forum is proof that when we work together, we can achieve real change. Crucially, it also shows the Government is listening to the neurological community. We are working closely with the Department to develop and deliver the forum and will ensure that the issues that matter most to people affected by neurological conditions are at the heart of its work.”

The Back the 1 in 6 campaign co-production group, said:

“For too long, our needs have been overlooked, but the UK Neuro Forum shows that our voices are finally being heard at a national level. There’s power in numbers. We are all individuals, but together we are a much louder voice, and today’s announcement is evidence of that. 

"People living with neurological conditions have been central to the campaign that has led to the Forum. It is vital that this continues in the work to come. It's only by working together in partnership and bringing together our diverse voices that we can build a future where everyone with a neurological condition gets the care and support they deserve, no matter where they live.”

Dr Niran Nirmalananthan, National Clinical Director for Neurology, NHS England, said:

“I am delighted we are announcing the launch of the UK Neuro Forum. Neurological conditions are the leading cause of disability and affect over 16 million people in the UK. This initiative brings together key stakeholders from across the UK for the first time, and aims to share learning to ensure patients receive the equitable care and treatment they need, with the goal of improving lives. This collaboration will bolster the ongoing work we are delivering through NHS England’s Neurology Transformation Programme.”