Representing all people in West Berkshire affected by a neurological condition
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Please find below updates on our current activities:
2024 Neuro Taskforce
UK Government has launched the first-ever forum to address gaps in treatment and care for people affected by neurological conditions
On Thursday 28 November 2024 Andrew Gwynne MP, Parliamentary Under-Secretary of State at the Department of Health and Social Care, has announced a new UK-wide forum will be set up 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 and supported by over 100 organisations and more than 19,000 people.
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 bi-annual meetings in the years ahead.
Aug 2025
NHS England has published a landmark “Specialised Neurology Services Service Specification” for adult care, setting out – for the first time – minimum service requirements for both specialised neurology services and core (ICB commissioned) neurology services across the country.
This is a major step forward for the estimated one in six people in England living with a neurological condition – conditions that affects the brain, spinal cord and/or central nervous system, including, but not limited to, epilepsy, Parkinson’s, Functional Neurological Disorder (FND) and Huntington’s disease. The specification sets out a clear and consistent vision for how care should be delivered, wherever people live, so that everyone can access the right care at the right time.
It outlines how specialised and local NHS services should work together in joined-up networks called “Integrated Neurology Systems”. This networked model of care is designed to make it easier for people to move between services and receive more of their care closer to home, reducing the need to travel long distances or face long waits for specialist support.
The specification can be accessed here
UK Government has launched the first-ever forum to address gaps in treatment and care for people affected by neurological conditions
On Thursday 28 November 2024 Andrew Gwynne MP, Parliamentary Under-Secretary of State at the Department of Health and Social Care, has announced a new UK-wide forum will be set up 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 and supported by over 100 organisations and more than 19,000 people.
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 bi-annual meetings in the years ahead.
August 2026 update
My Neuro Survey
Every two years the NA runs a major survey of patient experience which provides strong evidence for the changes that the NA would like to services for patients with neurological conditions in the in England
The My Neuro Survey data tool shows key findings from ‘My Neuro Survey’ 2024/25 in England and NHS waiting times data at local health system level, organised by Integrated Care Board.
At least 1 in 6 people in England live with a neurological condition but too often they are unable to access the services and support necessary to meet their needs.
The My Neuro Survey data tool turns lived experience into evidence for change, highlighting where care is working, where it is falling short and where action can make a real difference.
National Adult Neurology Audit
The pilot of the first ever National Adult Neurology Audit is now underway, marking an important milestone towards the UK’s first national audit of adult neurology services. Led jointly by the NHS England Getting It Right First Time (GIRFT) programme and the Association of British Neurologists (ABN), the pilot will test whether a UK-wide audit of adult neurology services is both feasible and meaningful. By collecting comparable data from neuroscience centres across the UK, the pilot will assess whether services can consistently report the information needed to understand variation in care and support future quality improvement.
Over the coming month, nine participating centres will complete the pilot questionnaire. The findings will help determine whether the proposed measures are practical to collect, meaningful for services and appropriate for wider implementation.
Adult Neurology Imaging in England
The Neurological Alliance has welcomed the publication of “Adult Neurology Imaging in England: A National MRI Capacity and Workforce Audit”, a new report highlighting significant variation in MRI capacity, access, scanner availability and specialist workforce across England.
GP Patient Survey
The NHS’s own measure of patient experience shows people with neurological conditions continue to face significant inequalities in access to and experience of care, highlighting the need for a national plan for neurological conditions.
More than 25,000 people living with a neurological condition responded to the 2026 GP Patient Survey, making it one of the largest national datasets on people’s experiences of primary care.
The findings are particularly significant because they come alongside NHS England’s new Quality Strategy, which places patient experience on an equal footing with safety and clinical effectiveness and identifies GP Patient Survey measures as key indicators of whether care is improving.
2024 Neuro Taskforce
UK Government has launched the first-ever forum to address gaps in treatment and care for people affected by neurological conditions
On Thursday 28 November 2024 Andrew Gwynne MP, Parliamentary Under-Secretary of State at the Department of Health and Social Care, has announced a new UK-wide forum will be set up 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 and supported by over 100 organisations and more than 19,000 people.
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 bi-annual meetings in the years ahead.