Change can’t wait
We campaign to fix a broken system and to secure lasting change. With your support we’ve achieved incredible things, but people with motor neuron disease (MND) still face big challenges.
*Data from our 2022 report ‘No Time to Lose: Addressing the Housing Needs of People with MND’. Average waiting times for accessible housing and home adaptations were gathered. These can be found within the full report.
It’s about time
MND is brutally fast. Average life expectancy is just 18 months from diagnosis. People with MND can quickly lose their ability to walk, talk, eat and breathe unaided. They need support to help them live their lives safely and have the best quality of life possible in the precious time they have left.
To keep pace with MND, services need to be put in place quickly yet many people with the illness wait far too long. Tragically, some people never receive the support they need in time.
*Data from our 2022 report ‘No Time to Lose: Addressing the Housing Needs of People with MND’. Average waiting times for accessible housing and home adaptations were gathered. These can be found within the full report.
When her husband was diagnosed with MND, Marie and her son had no choice but to wash Ian on the back decking using a bucket of water, due to delays with essential home adaptations:
“My husband Ian only lived for nine and a half months from diagnosis. That was precious time that we were supposed to spend making memories together. Instead, we spent most of it frustrated and stressed out, battling to get adaptations made to our home.”
We’re taking action
When the system fails, MND Scotland is here to guide people through a labyrinth of confusing processes. Every year we see the same problems time and again, including social care, adaptations and accessible housing.
People with MND quickly lose the ability to do what others take for granted – move around their home, wash, get in and out of bed and prepare food, meaning their families and friends can find themselves providing 24/7 care. Social care services provide a lifeline for people with MND and their families. However, the social care system in Scotland, and across the UK, has long been widely described as ‘in crisis’. The impact of this on people with MND is that many wait for weeks, or even months, for essential care to be fully put in place. For some, that care fails to arrive in time, while others are left with no option but to move to a care home.
In the run up to the Scottish Parliament elections in 2021, MND Scotland campaigned for a National Care Service to bring consistency of social care across the country. Now a Scottish Government priority, to be in place by 2029, work is underway to consider what a National Care Service should look like in practice. MND Scotland is taking every opportunity to help shape this and ensure that the National Care Service will meet the needs of people with MND and their families, across Scotland.
As people with MND lose the ability to move around their homes safely, adaptations such as ramps, grab rails and wetrooms can become essential. We support people with MND and their families to access these adaptations faster, yet many still wait too long.
Our recent report ‘No time to lose: Addressing the housing needs of people with MND’ highlighted that people with MND can wait months for adaptations to be put in place (up to 15 months for a ramp) leaving some trapped in their homes, or even a single room without access to wash facilities. Our report makes several recommendations for local and national governments, including fast-tracking people with MND for adaptations. We are currently working with the Scottish Government and local authorities on implementing these recommendations.
Some people with MND live in homes that are poorly suited for adaptations, for example a tenement flat where the local authority may not adapt the inside of the property if an external ramp cannot be fitted. In these cases, we can assist in helping people with MND to secure an accessible home.
However, waiting times for accessible homes can be even longer than those for adaptations. Our housing report revealed that one local authority had an average waiting time of 4 years for an accessible home. Recommendations in our report include direct matching people with MND for an accessible home, so they don’t need to bid online against other people for a property or go on a long waiting list, and for the Scottish Government to introduce a national accessible home building target of at least 10% for local authorities.
Our campaigning is informed by lived experiences of people living with MND and those caring for someone with MND. We are keen to hear from you if you have insights to share with us about your experiences. Alternatively, you can choose to donate today to support our campaigning work and help secure lasting change.
Securing
lasting change
Over the last few years, we’ve achieved remarkable progress in Scotland and across the UK on behalf of people with MND. We couldn’t do this without your support.
2022
Uniting with MND charities across the UK to secure a £50m commitment from the UK Government to fund a brand-new virtual MND research institute.
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2020
As part of a UK partnership, improving access to UK social security benefits for people with MND.
2018
Securing an effective fast-tracking process for new Scottish social security benefits for people with MND.
2015
Winning the right to communication aids supplied by the NHS.
2014
Ensuring people with MND would not need to pay for social care.
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