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patient voice
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Coproduction week: working together to back the 1 in 6
Rhys Holmes, who has the neurological condition superficial siderosis, joined The Neurological Alliance’s coproduction group to help develop the #BackThe1in6 campaign and help make the views and experiences of people with neurological conditions central to everything we do. For Coproduction Week (4 – 9 July 2022) Rhys tells us what being part of the group […]
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Providing insight, working together: driving the neurology agenda forward in 2022
David Martin, The Neurological Alliance’s Chair of Trustees and CEO of MS Trust, writes: I recently met Sally. She is living in pain. Sally is struggling to walk and struggling to work. Her appointment to see a neurologist is months away. Sally is one of the 176,000 people with existing or suspected neurological conditions whose […]
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England Rare Conditions Action Plan falls short on mental health
The Department of Health and Social Care have published the first Rare Diseases Action Plan for England, coinciding with Rare Disease Day on Monday 28 February 2022. The plan sets out the Government’s plans to improve the speed of diagnosis, access to genetic testing and how they assess access to medicines for rare conditions. The […]
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Clinicians and patient groups call for mandatory review of neurology care
The National Neuroscience Advisory Group (NNAG) is calling on NHS England and NHS Improvement (NHSE/I) to audit neurology services and implement a standardised set of outcome measures. Using standardised outcome measures would allow a more accurate understanding of access and experiences of care and how services are delivered across England. This would make it easier […]
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Shared goals, shared knowledge: raising the profile of neurorehabilitation
The Independent Neurorehabilitation Providers’ Alliance (INPA) recently joined The Neurological Alliance. Chloë Hayward from INPA writes: INPA is a collation of independent organisations providing rehabilitation for people with acquired brain injuries, spinal cord injuries and neurological conditions. Some INPA members are large companies with multiple specialist units, others have one dedicated service. There are also […]
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Unwavering focus: pushing for improvement in neurological services
Dr Arani Nitkunan, consultant neurologist and Neurological Alliance Trustee, writes: As a consultant neurologist working mainly in a district general hospital in Southwest London (Croydon University Hospital), there are several reasons why I very much appreciate all the work of The Neurological Alliance. Firstly, the Alliance’s surveys (including My Neuro Survey), have informed us that […]