People living with a motor neuron disease (MND) diagnosis in Scotland are a step closer to receiving priority care assessments following the Care Reform (Scotland) Bill passing on Tuesday, 10 June 2025. 

Amendment 69, brought forward by Scottish Labour MSP, Paul Sweeney, ensures everyone living with a terminal illness is entitled to a priority care assessment, and expeditious reassessment if their needs change.  

Rachel Maitland, CEO of MND Scotland, said: “The average life expectancy of someone living with MND is just 18 months. They don’t have time to wait. This recognition that priority care assessments are needed will ensure people facing terminal illness receive the care and support they need without unnecessary delays. This change will also bring much needed consistency across Scotland when it comes to care assessments for the terminally ill.” 

Now the legislation has passed, regulation is required to determine best practice – including the length of time people will have to wait before being assessed. Timescales for the secondary legislation will be agreed by Ministers over the coming weeks. 

Christopher Buckland from East Renfrewshire was diagnosed with MND in February 2022. Christopher said: “At the start of 2024 I could shower and dress by myself. I could also make coffees and do some cooking by myself. But by the end of the year, I couldn’t achieve any of these and my wife’s workload had rapidly increased. I received a phone call in mid-February saying that a social worker would be assigned to me and although I was top of their list it would be a couple of months before they could get to me.” 

Following significant deterioration in his symptoms, including problems with walking, balance and speech, Christopher requested support with his care needs in January 2025. He eventually met with a social work at the end of May 2025 but, five months on from the initial request, he still has no support in place. 

Paul Sweeney MSP said: “It is right that those living with MND, and other terminal illnesses, receive a priority care assessment so that an appropriate care package can be put in place quickly. 

“I am glad that the Scottish Government have recognised the calls from MND Scotland and Scottish Labour to put an end to the current system that sees people with a terminal diagnosis spending their precious time fighting to get the care they desperately need.” 

Rachel Maitland, CEO of MND Scotland, added: “If you were facing a terminal diagnosis, would you want to spend the precious time you have left fighting for appropriate care? You would want to spend it making memories with your loved ones.  

“This new requirement for Scottish ministers to set clear timescales for assessing the needs of someone living with a terminal illness aligns with the current social security Scotland framework – under Special Rules Terminal Illness – where fast-tracking of benefits for terminally ill people is in place to ensure that those affected get faster and easier access to certain benefits. Social care will now have the same urgency.  

“The MND community is grateful to Paul Sweeney MSP for his support, and the wider cross-party support the amendment received.” 

MND Scotland recommended the amendment to the Care Reform (Scotland) Bill for people living with a terminal illness, like motor neuron disease. MND is a rapidly progressing terminal illness, which stops signals from the brain reaching the muscles. This may cause someone to lose the ability to walk, talk, eat, drink or breathe. 

The charity also recommended an amendment to make care packages ‘portable’, meaning an individual’s care and support followed them if they relocated to another local authority area due to their need for an accessible home. This amendment was also passed in the Care Reform (Scotland) Bill.