Following Baroness Casey’s recommendation in her Nuffield Trust speech in March this year, the Minister for Social Care has written to local authorities to encourage the fast-tracking of access to care for people with motor neurone disease (MND), ahead of wider reform.
Key extracts from the letter
"As you will know, Baroness Casey is chairing an independent commission into adult social care, reporting into the Prime Minister. Baroness Casey made a number of immediate recommendations in March this year, including a recommendation to fast track access to care and support for people with Motor Neurone Disease.
The Minister set out the immediate initial steps we are inviting local authorities to take to streamline and accelerate access to care and support for people with Motor Neurone Disease within existing frameworks, ahead of fuller collaborative reform.
Motor Neurone Disease is a severe, progressive and terminal condition that requires rapid, responsive care as needs quickly evolve. As part of her review, Baroness Casey heard directly from people with personal experience of Motor Neurone Disease about delays in accessing the right care and support, and the profound impact this can have on individuals and their families, including avoidable crises, hospital admissions, and a loss of independence and dignity…
… It is essential that services respond with pace, coordination and foresight to keep up with escalating and complex needs. The Department of Health and Social Care is already taking forward Baroness Casey’s recommendation at pace, working in partnership with the Motor Neurone Disease Association, as well as extensively across local government representatives, the NHS, wider sector partners, and drawing on the experiences of people with Motor Neurone Disease, to develop ways of driving both immediate improvements and more substantial reform.
In the meantime, there is immediate scope for many areas to better meet the needs of people with Motor Neurone Disease within existing frameworks and partnerships, including through prioritising timely, straightforward assessment processes and delivering coordinated, responsive care and support…
If you are not already doing so, I strongly encourage you to:
- Fast track access to care and support for people with Motor Neurone Disease, so services respond quickly to diagnosis and take a forward-looking approach, planning ahead in line with the progressive nature of the condition. The National Institute For Health and Care Excellence guidelines on Motor Neurone Disease emphasise the importance of anticipating need, providing early access to support, and taking steps to avoid disproportionate delays. Local authorities can enable this by giving front line practitioners the authority to prioritise cases early, conduct forward looking assessments and take proportionate, risk-based decisions to expedite support.
- Ensure streamlined multi-professional team approaches are in place for assessing and meeting the needs of people with Motor Neurone Disease. Where local systems have existing arrangements, ensure adult social care and home adaptation functions are both appropriately represented and actively participating. Building these cross-system relationships will also lay the foundations for future integrated neighbourhood teams: delivering more coordinated, personalised and joined up care, to enable earlier identification of need and help to prevent avoidable crises. The Motor Neurone Disease Association’s toolkit provides practical guidance on how to establish an effective multi-disciplinary approach.
- Review and update the housing assistance policies that enable fast tracking of support, ensuring adaptations can be delivered without unnecessary delay.
- Consider waiving the Disabled Facilities Grant means test. The Disabled Facilities Grant delivery guidance already recognises that people with Motor Neurone Disease often want to continue working at the onset of their condition, which can make them ineligible for statutory Disabled Facilities Grant funding through the means test, but that by the time they can no longer work, an un-adapted home can make daily life difficult…
… Finally, while the letter focuses on Motor Neurone Disease as one of the most acute and time critical conditions, I would encourage you to consider how these approaches might also apply to people with similarly rapidly progressing needs."
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