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MND patients face years waiting for suitable housing


Charity called the situation "abysmal"

A Scottish Parliamentary reception for motor neuron disease (MND) has heard of the urgent housing situation being faced by people living with the terminal illness.

The reception was attended by some 100 guests, 70 of whom had been directly affected by MND.

They were joined by MSPs, Scottish Government ministers and members of MND Scotland’s staff and Board of Trustees.

Key speakers included Bob Doris MSP, Marie Cartwright – whose husband Ian died of MND in 2019, MND Scotland Chief Executive Rachel Maitland, and the Cabinet Secretary for Social Justice, Housing and Local Government, Shona Robison.

Speakers focused on MND Scotland’s flagship principle of ‘making time count’, with a specific focus on key housing issues, such as fast-tracking home adaptations for people with MND and better priority for accessible housing. The event also highlighted issues around social care.

During her emotionally-charged speech, Marie Cartwright highlighted the abysmal speed of having adaptations fitted.

Rachel Maitland, Chief Executive of MND Scotland focused on the lack of Scottish Government progress there has been since MND Scotland launched its housing report, and the lack of visible progress the government has made on its own ‘Housing to 2040’ strategy, which includes a number of accessible housing commitments.

Maitland said: “This parliamentary reception marks a year since we launched our report ‘No time to lose: Addressing the housing needs of people with MND’.

“As so many of you know only too well, MND’s rapid progression means people become increasingly disabled. This makes moving around homes safely, more and more difficult. As a result, people with MND often need adaptations to their home, such as ramps and wetrooms, and they need them fast. If adaptations can’t be made to the property, they need an alternative accessible home.

“Speed is key when you have an illness like MND. People with MND need to be prioritised and fast-tracked for adaptations and accessible housing but those who took prt in our research told us that this is not happening.”

She highlighted alarming statistics gathered by MND Scotland from Scottish local authorities, through Freedom of Information (FOI) requests revealing that one local authority had average wait times as high as 15 months for ramp installations, while another reported waits of up to four years for an accessible home.

She urged the Cabinet Secretary to meet again with MND Scotland to ensure that people with MND can live in their homes safely, with dignity and respect.

She concluded: “Change is needed and it is needed now – people with MND have no time to lose. We urge the Scottish Government to deliver on the recommendations in our report and its accessibility commitments in the Housing to 2040 strategy. Work with us now and help ensure that people affected by MND have the best quality of life possible.”

Shona Robison, Cabinet Secretary for Social Justice, Housing and Local Government was the final speaker of the evening. She began by responding to Marie’s story, outlining the specific housing policy areas where she would like to see improvements based on Marie’s personal experience.

She said: “The [housing report published by MND Scotland] raised fundamental questions about the adaptations process; making it simpler, making it quicker, having flexibility…. It was brought home to me that sometimes looking for perfection of a solution sometimes leaves someone in a worse situation, rather than moving them to a better situation, and that lack of flexibility we absolutely need to address. Prioritising and fast-tracking for those with MND, and other similar illnesses, and to make sure that happens.

“Let me give you this absolute guarantee, from what I’ve heard tonight, I’m absolutely not happy about the pace of change and I want to reach out across government and give a bit of a shoogle, shall we say, about making some progress happen.”



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