Change can’t wait

Across the country, there are wait lists exceeding 15 months for a ramp, and 4 years for an alternative accessible property. These waits are difficult for anyone, but when someone has MND, they are devastating and detrimental. 

Our report ‘No Time to Lose’ (2022) evidenced the realities facing people with MND across local authorities when it comes to housing and adaptations. As well as highlighting the impact of delays, complex processes, and extensive wait lists, the report also makes evidence-based recommendations like fast-tracking, streamlining processes, and increasing accessible housing builds.

With the experiences that people living with MND and their families have shared, this work on housing has led to tangible changes including:

• The inclusion of proactive assessments for people with rapidly progressing illnesses within the Scottish Government’s Guidance on the Provision of equipment and adaptations (2023) “For people living with progressive terminal conditions, future needs should be planned for, by working closely with the individual, and specialist nurses and occupational therapists, to ensure that equipment and adaptations are provided in time”
• Work with housing associations to secure fast-tracked housing and adaptations processes for people with MND, such as FLAIR’s MND pledge.
• Co-authored guidance for occupational therapists, with the Royal College of Occupational Therapy 
• We continue to work with the Scottish Government, MSPs, membership in the Scottish Government’s Adaptations Working Group, Cross Party Groups, and with local authorities and organisational bodies to ensure that the needs of people affected by MND continue to be campaigned for at all levels.

Securing fast-tracked care assessments through Care Reform (Scotland) Act 2025

Through our work with MSPs, we successfully secured the inclusion of fast-tracked social care assessment/reassessment for people with conditions like MND. This means that once secondary legislation is put in place, people with MND across Scotland should receive fast-tracked, prioritised social care assessments, and will have greater flexibility to enable care packages to move with them should someone locate to a different local authority.

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. 

We 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.  

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. We are working closely with the Scottish Government to implement this now. The SNP included the urgent implementation of this work within their party manifesto for the 2026 election, as result of our influencing work.

You can read more about our current policy priorities for the Scottish Government in our manifesto.

We successfully campaigned with Marie Curie to improve how terminally ill patients, including those with Motor Neurone Disease (MND), are treated under the Social Security (Scotland) Act 2018.

As a result of our campaign, people living with a terminal illness in Scotland no longer have to prove how long they have left to live to access financial support, for benefits. Prior to our campaign, under the UK system people with MND had to prove that they had just 6 months left to live to be fast-tracked and to claim the maximum level of benefit. This meant people were missing out as it was very difficult to ‘prove’ someone with MND only had 6 months left to live.

Our award-winning campaign fought to ensure people with MND get fast-tracked access to benefits based on clinical judgement of a diagnosis of a terminal illness, without having to prove a specific six-month life expectancy as had been the case previously. The implementation of BASRiS (previously SR1/DS1500) forms which fast-track benefits and financial support are now available to someone with MND from the point they are diagnosed.