Minister Writes To Councils Urging Faster Access To Care For People With Motor Neurone Disease
The Minister for Social Care, Alison McGovern MP, has written to local authorities across England urging them to fast-track access to care and support for people living with Motor Neurone Disease (MND), as part of the government’s ongoing programme of adult social care reform.
The letter follows a recommendation made by Baroness Casey in March this year during a speech to the Nuffield Trust, in which she called for immediate action to speed up access to care for people with MND while her wider independent commission into adult social care continues its work reporting to the Prime Minister.
Describing MND as a “severe, progressive and terminal condition” that requires rapid, responsive care as needs evolve, the letter notes that Baroness Casey heard directly from people with lived experience of the disease about delays in accessing appropriate care and support. It warns that such delays can lead to avoidable crises, unnecessary hospital admissions, and a loss of independence and dignity for those affected.
According to the letter, the Department of Health and Social Care is already working at pace with the Motor Neurone Disease Association, local government representatives, the NHS and wider sector partners to develop both immediate improvements and longer-term reform. In the meantime, it says there is “immediate scope” for many areas to improve support within existing frameworks and partnerships.
Local authorities are being encouraged to take several immediate steps. These include fast-tracking access to care and support so that services respond quickly following diagnosis, with front-line practitioners empowered to prioritise cases early, carry out forward-looking assessments and make proportionate, risk-based decisions to expedite support in line with National Institute for Health and Care Excellence (NICE) guidelines.
Councils are also urged to ensure streamlined multi-professional team working is in place, with adult social care and home adaptation functions properly represented and actively involved where such arrangements already exist. The letter suggests this will help lay the groundwork for future integrated neighbourhood teams, enabling earlier identification of need and more joined-up, personalised care. The Motor Neurone Disease Association has produced a toolkit offering practical guidance on establishing effective multi-disciplinary team working.
In addition, the letter calls on local authorities to review and update housing assistance policies to ensure home adaptations can be delivered without unnecessary delay, and to consider waiving the means test for the Disabled Facilities Grant. It notes that many people with MND wish to continue working following diagnosis, which can render them ineligible for grant funding under the current means test — yet by the time they are no longer able to work, an unadapted home can significantly hinder daily life.
The letter concludes by encouraging councils to consider applying these approaches more broadly to other conditions involving similarly rapid deterioration, beyond MND alone.
The intervention forms part of a broader push by the government to accelerate improvements to adult social care ahead of fuller reforms recommended by the Casey Commission.
