Scottish Parliament reception highlights MND housing issues

The first Scottish Parliamentary reception for motor neuron disease (MND) in more than three years has focused on the urgent housing situation being faced by people living with the rapidly progressing terminal illness.

The reception for MND Scotland was hosted by Bob Doris MSP in the Garden Lobby of the Scottish Parliament building at Holyrood. More than 100 guests were in attendance, 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 focussed 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.

Marie said: “Ian’s diagnosis came as a surprise. From October 2017 he thought his old knee injury was causing him mobility issues and this took 14 months of investigation. We came to learn on the 19th of December 2018 that in fact Ian had motor neuron disease. This was Ian’s last Christmas. From diagnosis, Ian lived for another 9 and a half months.

“This 9 and a half months was one of the heart-breaking times that our family has ever experienced. Over that time, we watched Ian physically and emotionally change. Ian was always the life and soul in every room, he was always happy, whistling or singing a tune and making bad dad jokes. After the 19th of December, we never heard Ian whistle or sing again.”

Marie went on to speak about the adaptations Ian needed to live safely, and with comfort and dignity.

She said: “At diagnosis, Ian was told that his MND progressive state was slow to medium, as it was contained mainly within the right leg. We would soon learn that this was not the case and Ian’s condition deteriorated very rapidly.

“When assessed, around diagnosis it was said that he would need indoor and outdoor handrails, a stairlift and a standing aid. These were completed within approximately three months and initially it felt like we would get the support we needed.

“When Ian’s mobility rapidly declined, and he could no longer move on his own, this is where we started to realise that the support we needed wasn’t going to be easy to receive. The support was too slow and too linear.

“No longer able to use the stairlift, Ian was confined to the downstairs of his own home – without a bedroom, bathroom and without his dignity.”

During the months that followed, it was identified that the couple would need a garage conversion, a wet room for bathing Ian, a permanent outdoor ramp and a more suitable medical bed. Marie and Ian’s local authority was unable to put in place any of these adaptations before Ian tragically died.

Marie continued: “This was a very traumatic and trying experience for us all. We wanted this time to make memories whilst Ian had his dignity.

“During Ian’s last 9 and a half months, he learned he was going to be a Grandpa for the first time. Ian became a Grandpa on the 10th of October 2019, to Calum. He did get to meet and hold Calum and he passed away on the 13th of October.

“For a family, it was the best and worst time – to celebrate the arrival of a new family member whilst seeing another pass away.

“We felt unsupported by our local council, that Ian’s final days lacked the proper dignity and respect that everyone should be entitled to. Ian worked his whole life helping others, so have his family, and we were let down – and the impact on us can never be put right. However, everyone here today can do something to ensure that no one has to live with the indignity that Ian did.

“Myself and my children want local authorities and the Scottish Government to make a commitment that no one at the end of their life goes through what Ian had to go through – that no one with MND –or any terminal illness– has to live without dignity and respect.”

Rachel Maitland, Chief Executive of MND Scotland, also spoke at the event. She 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.

Rachel 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 part in our research told us that this is not happening.”

In her speech, Rachel highlighted alarming statistics gathered by MND Scotland from Scottish local authorities, through Freedom of Information (FOI) requests. They revealed 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.”

Speaking about the changes that are required across housing and social care, she concluded: “I’ll leave you with this thought; if we can get it right for people with MND, in terms of the support around housing and your care needs, then we’ll probably get it right for everyone.”

In her speech, Rachel Maitland asked the Cabinet Secretary to meet with us again to discuss the recommendations of MND Scotland’s housing report, to which the Cabinet Secretary agreed. This meeting will now be arranged.