The UK government has launched the first ever Neuro Forum to address gaps in treatment care in neurology.
Parliamentary Under-Secretary of State at the Department of Health and Social Care (DHSC), Andrew Gwynne announced the new UK-wide forum last week (28 November 2024). He said it will work to improve care and support for people affected by neurological conditions.
The forum will hold formal biannual meetings, bringing together clinical leaders, organisations and people with lived experience of neurological conditions, such as epilepsy. The forum is expecting to hold its first meeting in early 2025.
The announcement follows the long-standing ‘Back the 1 in 6’ campaign by the Neurological Alliance organisations from the four UK nations.
The forum will “aim to drive real progress in areas where UK-wide collaboration is most impactful”, the Neurological Alliance said. It added that the forum will drive person-centred care and “address unwarranted variation in access to care across the country”.
The ‘Back the 1 in 6’ campaign called on the UK government to establish a Neuro Taskforce to address challenges facing people affected by neurological conditions.
The campaign also wanted support with problems including treatment and care delays, lack of mental health and wellbeing support and insufficient information at the point of diagnosis.
‘Back the 1 in 6’ was informed by the experiences of over 8,500 people who responded to the Neurological Alliance’s My Neuro Survey. More than 100 organisations, including Epilepsy Action, and more than 19,000 people supported the campaign, the Neurological Alliance said.
Strengthening the patient voice
In support of the campaign, Epilepsy Action called for a national Neuro Taskforce in its manifesto ahead of the July election.
Alison Fuller, director of Health Improvement and Influencing at Epilepsy Action, said: “It’s encouraging to see concrete steps being taken to improve the care of people with a neurological condition.
“We are especially pleased to see the project will aim to include patients with lived experience as part of each forum meeting. Their perspective is essential to properly understand current gaps in care, and what needs to be done to plug them.
“Strengthening patient voice is front and centre in our campaigning work, and action from the DHSC to improve this is something we have been calling for in our manifesto for change, ahead of the new government taking their seats. We’re glad to see action being taken to make this happen.”
The leaders of the four UK Neurological Alliances added: “We are working closely with the Department (of Health and Social Care) 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.”
National clinical director for Neurology at NHS England, Dr Niran Nirmalananthan, said: “Neurological conditions are the leading cause of disability and affect over 10 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.”
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