16 December 2025 News
Support for unpaid carers, postcode lotteries and delays in receiving support have been raised by the MND Association as major issues in adult social care.
Our views have been submitted to the independent Casey Commission, which will report to the Prime Minister in 2028.
We’re responding as an organisation using the feedback we’ve had from you, our community, but the Government wants to hear your experiences as well.
You can give your thoughts on how the system works today – good and bad – and ideas about how it could be improved.
Whether you use care and support, are an unpaid carer, work in care yourself, or just want to share your thoughts as an interested citizen and a member of the MND community, all views are welcome.
We have three top concerns in adult social care which we feel require urgent improvement:
- People living with and affected by MND are frequently reporting issues accessing the care they need, due to an underfunded system and a shortage of skilled and experienced care staff.
- Unpaid carers are often relied on to prop up a broken system which is having negative effects on their physical and mental health – a situation that is unacceptable.
- Delays in Continuing Healthcare (CHC), social care and Disabled Facilities Grants (DFGs) mean many people with MND die before receiving essential support, spending their final months fighting bureaucracy instead of making the most of what time they have left.
Alex Massey, Head of Campaigning, Policy and Public Affairs, said: “Many in our community receive care that is not good enough or have to fund it out of their own pocket, a situation that is unacceptable.
“Too often, unpaid carers are left to plug the gaps by looking after friends and family at home without adequate support.
“People with MND need a system that works – for them, their carers and their families, which is why were glad to offer our recommendations to the panel.”
As part of our submission, we have highlighted best practice examples of MND care co-ordination in NHS trusts across the country.
This includes Rapid-Response Services for people with MND in emergency situations, such as falls or injuries, and Personal Health Budgets ensuring adequate funding going directly to carers.
The Commission will propose a phased plan for a new National Care Service by the end of 2026, then follow up with longer-term recommendations to deliver a fairer, more sustainable adult social-care system in England by 2028.
The MND Association will continue to engage with the Casey Commission, to ensure the needs and priorities of people with MND are fully considered.