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Showing results for tags 'Motor neurone disease'.
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News Article
Teen wins battle for 'groundbreaking' MND drug
Patient_Safety_Learning posted a news article in News
A 19-year-old with motor neurone disease (MND) says she has been given a "future" after winning a battle for access to a groundbreaking drug. Lillia Jakeman, of Romsey in Hampshire, has a rare form of MND which the drug Tofersen has been shown to slow. The medication has not yet been approved for use on the NHS but after an awareness campaign by Lillia and her family she has now been offered treatment at King's College Hospital in London. A Department of Health and Social Care (DHSC) spokesperson said the National Institute for Clinical Excellence (NICE) was working with the manufacturer on whether Tofersen should be routinely funded by the health service. Read full story Source: BBC News 24 February 2026 -
Content Article
1 in 6 people in the UK live with a neurological condition, but there simply isn’t the workforce or services in place to provide the support they need. Every two years, The Neurological Alliance runs My Neuro Survey to give a picture of the experience of care, treatment and support for people with neurological conditions. From a lack of mental wellbeing support, delays to life changing treatment and care and a lack of information and support at diagnosis, over 8,500 people living with or affected by neurological conditions across the UK shared their experiences in the 2021/22 My Neuro Survey. Call for action The report calls on the UK Government, Scottish Government, Welsh Government and Northern Ireland Executive to prioritise services for people with neurological conditions and establish a Neuro Taskforce. The Taskforce would bring together relevant departments, health and social care bodies, professional bodies, people affected by neurological conditions and the voluntary sector to: Assess the current neuroscience workforce and set out plans to ensure it is fit for the future. Share approaches to common problems, such as addressing longstanding barriers to accessing mental, emotional and cognitive support, driving down waiting lists for elective care, improving the quality and analysis of health and care data and supporting transition between paediatric and adult neuroscience services. Assess the level of investment in research into the causes, impacts and possible cures of neurological conditions and set out plans to level up investment in areas that do not receive a fair share currently.- Posted
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- Medicine - Neurology
- Mental health
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