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Mum in need of accessible home calls for government action

A 27-year-old mother of two, living with MND, is fighting for a wheelchair accessible home, that is big enough for her growing family.

Posted : 07/03/2022

Lucy Lintott has joined forces with MND Scotland to call for urgent government action, as she continues to fight for a suitable accessible home in her local area of Elgin.

Lucy (27) is just one of the many people currently living with motor neurone disease (MND), who have been waiting too long for the accessible homes, or adaptations, they desperately need.

People with MND can quickly lose the ability to walk, talk, eat and breathe unaided, and too many are spending the precious time they have left fighting for a safe and accessible home. For some, this never comes in time.

Today, we have launched a new report highlighting Scotland’s failing housing system for people like Lucy, and are calling for Scottish and local government action now.

Lucy currently lives in a small accessible ‘sheltered’ flat; however, it no longer meets her needs.

With the birth of Lucy and partner Tommy’s son LJ in 2020 and daughter AR in 2021, as well as her need for overnight carers as her health deteriorates, the two-bed flat has become too small.

However, Lucy was told by the local authority a new accessible home wouldn’t be available until 2023 at the earliest. She has already been on the list for a 3-bedroom accessible home for over a year.

She said:I got offered a 2-bed bungalow but had to turn it down as it was smaller than my flat and I need a third bedroom for overnight care. I have two young kids, who are only going to get bigger and take up more space around the flat. It’s just not realistic to stay where I am for much longer.

“It's shocking considering people with MND’s life expectancy is so low. Being told I can’t get home until 2023 doesn't give me much hope.”

Before Christmas, MND Scotland’s Advocacy Worker stepped in to support Lucy with the issues she was having.

“Carla from MND Scotland has been amazing by challenging the council, and has taken some of the stress off me, but neither of us should have to be doing this.

“I think there should be more properties available with the space needed for those in wheelchairs full time.”

MND Scotland’s report ‘No time to lose: Addressing the housing needs of people with MND’ highlights how the current processes for home adaptations, and allocating accessible housing, in Scotland are not working for people with MND. The number of accessible homes is insufficient to meet needs, and housing allocations and adaptations systems do not move fast enough. 

Report recommendations

We are urging the government to take action now. Our report sets out recommendations for Scottish Government and local authorities based on research with people affected by MND.

Our recommendations include:

  • Establishing a national definition of accessible housing
  • Ensuring a minimum of 10% of new build homes are built to a wheelchair accessible standard
  • Fast-tracking people with MND for accessible homes
  • Directly matching people with MND with potentially suitable properties

Susan Webster, MND Scotland’s Head of Policy and Campaigns, said: “Lucy’s story illustrates the urgent need for more accessible housing across Scotland, including family sized homes. People with MND simply cannot afford to wait, but a scarcity of properties in Lucy’s local area means that waiting is the only option. Her experience also shows the impact of not having somewhere accessible to live – being unable to be cared for properly and live together as a family. Precious time should be spent making memories, not waiting for somewhere suitable to live.

“Lucy’s experience is not unusual. Our report shows that people with MND are waiting too long for the essential support they need. Speed with MND is key. The average life expectancy of someone with MND is just 18 months from diagnosis, yet many waiting lists for essential adaptations and accessible homes are longer than this.

“This means people with MND are left trapped in their homes, sometimes in a single room. Tragically, some people with MND never get the support they need in time. Everyone deserves to live in their home safely and with dignity, and current systems and processes are failing people with this terminal illness. MND does not wait, and neither can people with the illness. Change is needed now.”

To read our key findings, recommendations and full report, visit: www.mndscotland.org.uk/housing.

We're here for people when the system fails

If you've been affected by the issues raised in our report, we are here to help. Please contact our advocacy team for support and advice.

We will continue to be here for people when the system fails. You can help fight for change and improve the lives of people living with MND in Scotland, by donating today 

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“It's shocking considering people with MND’s life expectancy is so low. Being told I can’t get home until 2023 doesn't give me much hope.”

Lucy Lintott

Lucy Lintott