Chamber and committees

I thank my colleague Bob Doris for securing this important debate. I recently met MND ScotIand to discuss its report “No time to lose”, which addresses the housing needs of people with motor neurone disease, and to hear of the lived experience of my constituent Lynn McCartney, who is the surviving daughter-in-law of MND sufferer Drew McCartney. I welcome Lynn to the public gallery.

At that meeting, I heard about how too many people with MND cannot get adaptations or an accessible home quickly enough because the systems are not designed for people who are living with a rapidly progressive terminal illness. I heard that waiting lists for adaptations and accessible housing in some local authorities are longer than the average life expectancy for somebody with MND, which—as we have heard—is approximately 18 months from diagnosis. As a consequence, people with the illness can be trapped in unsafe homes, sometimes in a single room, living without the dignity and care to which every person is entitled.

I heard at first hand from Lynn about the challenges that she and her family faced when they were trying to secure suitable accommodation for her father-in-law, Drew, after their home was deemed unsafe and about the immense anxiety and stress that that caused the family during the precious time that they had after Drew’s MND diagnosis. That experience is, regrettably, all too familiar.

The McCartneys resorted to residing in their towing holiday caravan without central heating or running hot water, outwith their local area and support network, for nearly a year—some members might remember that their story was on the news. They did so to provide Drew with the most accessible accommodation as quickly as they could, once it became apparent that, with many external and internal stairs, their home was no longer safe.

Drew and his wife Helen were eventually rehoused in a lovely accessible bungalow in Cumnock, near family, where he was able to live his remaining life to the full, surrounded by friends and family. His daughter-in-law Lynn was at pains to explain to me that Drew got many more months than the average MND patient. Had that not happened, he might well have passed away while living in the caravan.

I cannot escape the valid points that my constituent and MND Scotland make with regard to the housing struggles that people who receive an MND diagnosis face. In particular, I am struck by the desperately short life expectancy of 18 months from diagnosis.

I drew the family’s plight to the cabinet secretary’s attention, and she advised me that “Housing to 2040” sets out our vision for housing in Scotland, with a route map to help us achieve that. The aim of the strategy is to ensure that everyone has a safe, good-quality and affordable home that meets their needs, in a place where they want to be. The strategy covers all aspects of housing and independent living for disabled people.

I am glad to note that actions that are being progressed include improvements to streamline and accelerate the adaptations system and that, as part of that work, the adaptations process will be made simpler and quicker and that there will be options for fast-tracking those with MND and other life-limiting illnesses. In addition, there will be a focus on promoting awareness and greater use of the scheme of assistance to fund adaptations, and consideration of passporting good practice in the allocations process, such as offering options to directly match people with MND and other life-limiting illnesses with suitable accommodation.

The review work will also consider the requirement for a consistent, nationally agreed definition of what an accessible home is and progress on delivering wheelchair housing targets. We have heard from members of all parties that there is currently a postcode lottery in support. We need to have an agreed definition. I am pleased that, as Mark Griffin has pointed out, our new adult disability payment from Social Security Scotland will ensure that those who are facing this illness will be financially supported in a respectful and dignified way.

I have also been engaging with the newly appointed head of housing and communities at East Ayrshire Council, who has agreed to work closely with MND Scotland to ensure that their next housing needs and demand assessment to inform the council’s local housing strategy will have MND fully in mind.

Those who are living with MND have no time to lose. It is incumbent on us, in this place, and on those in our council chambers to find solutions that will enable those people to spend what time they have left in pursuing what makes them happiest, with those whom they love the most.

Fantastic.

The committee will now consider two negative instruments. For the first instrument, background information is outlined in paper 1. Are members content to note the instrument?

I refer members to paper 2 for background information on the instrument. I had a slight concern with regards to ensuring that pregnant women would always have the right to apply in their own right and that that would supersede any other applications, but information on that is laid out in the paper. I am therefore happy to just put that on the record, and note that it has been dealt with.

As there are no other comments, are we happy to note the instrument?

Members indicated agreement.

Yes, because I anticipate that, should such information be withheld and the person be provided with the reasons why, there would have to be an appeal process. We will ask the clerks to write to ask for clarification on that. Do members agree to that approach?

Members indicated agreement.

I cannot say what the rationale behind that would be without having the clinical background, and we do not have anybody from the Government here to answer that. We could write to the Government and ask for that to be clarified.

That concludes the public part of the meeting. At next week’s meeting, we will hear from the Cabinet Secretary for Social Justice, Housing and Local Government and the Cabinet Secretary for Finance and the Economy on the subject of the resource spending review. We will also hear from the cabinet secretary and the minister in the final evidence session of our low income and debt inquiry. We were due to have that session today, but it had to be postponed.

I guess that it would be helpful if we had that information. I anticipate that it would be clinical information. My understanding from reading the instrument is that the person who has had information withheld from them would have the right to know why it was being withheld. I guess that the reason why they were not being given the information would have to be laid out explicitly, and that it would be due to the harmful nature of that, as perceived by health professionals.

Good morning, and welcome to the Social Justice and Social Security Committee’s 19th meeting in 2022. We have received apologies from Foysol Choudhury.

Our first item of business is to decide whether to take item 3 in private. Do members agree to do so?

Members indicated agreement.

As we move to a circular economy and improve our waste-prevention activities—for example, through the recent removal of single-use plastics—and with an ever-increasing awareness of the vital need to reuse, reduce and recycle our domestic waste, does the minister agree that Dr Colin Church’s report lays bare that incineration should be a transitional technology that helps to bridge the gap between mass landfill and a low-waste, low-carbon and more circular economy? His capacity analysis shows that there is a real

“risk of long-term overcapacity beginning from 2026 or 2027, if all or most of the incineration capacity ... is built”.

With that in mind, does she agree that proposed developments that are still to be consented, such as the Killoch energy from waste facility in my constituency, should not be consented, as incineration infrastructure that is within the scope of the review.