Hansard

I thank the Government and the cabinet secretary for using the debate time this afternoon to talk about Gordon’s life and work. I know that that is very much appreciated by his family, who sit in the public gallery behind the cabinet secretary, and, indeed, many of his friends, who I can see across the length and breadth of the gallery. I genuinely thank the cabinet secretary for that.

I paid a very personal tribute to my very close friend, Gordon Aikman, at his funeral and memorial on Saturday. I am not going to do that again today. He would not want me to. He would think that if he had the whole Parliament at his disposal, and the ears of all these politicians, I should talk about what he did, but, perhaps most importantly, about what he might have liked to see happen next. I intend to talk a little bit about two of his campaign achievements and then about what else the Government could do to support people with MND. If I have any time left after that, I would like to say a little bit about what he taught me in general about living with a disability in Scotland today.

The first thing that is worth recognising—the cabinet secretary referred to this—is the work that Gordon did to guarantee people a right to communication aids. In particular, the cabinet secretary referenced the use of voice-banking technology. She might not be aware, though, that every single party leader in the chamber actually went and recorded their voices at the Anne Rowling clinic in Edinburgh, for an hour. Just speaking and reading excerpts from the Herald for an hour can allow the results to be synthesised to give people their voices back. The more voices that the clinic has—especially with particular accents or dialects—the more realistic those voices can be when they are given back. It does, however, mean that it is possible for the voices of all the party leaders to be merged into one voice and to be given to an individual. [Laughter.] Think about the power or indeed the trouble that could be caused with that capacity; I know that Gordon certainly contemplated the benefits if that could have been put to use in his time.

The second most significant of his campaign achievements was around doubling the number of MND nurses in Scotland. Until I spoke to Gordon about his campaign, I did not fully understand what MND nurses actually do. It is worth taking a moment to reflect on that. I thought that they were just really good at cleaning feeding tubes or really good at fixing ventilators. No, no, no—it is much bigger and much more thorough than that. I have an example to share with members in the chamber.

In Edinburgh, in NHS Lothian, just a few months ago, it was possible that somebody who had MND and required a feeding tube—because quite often MND takes away someone’s muscle capacity to chew food or it attacks their stomach and they need to have a feeding tube inserted—might have to wait 22 weeks for that procedure. Very often, in the passage of that 22 weeks, an individual’s ability to be well enough to undergo that procedure would deteriorate. They would be too sick for the anaesthetic. They therefore could not get the feeding tube that they needed to extend their life.

An MND specialist nurse studied the whole process of trying to access that healthcare and realised that the blockage that led to that 22 week wait was because of the wait to see a nutritionist; that was the only problem. The waiting time did not need to be 22 weeks. If the wait for the nutritionist could be speeded up, the total waiting time could be crunched right down to two or three weeks.

Rather than speeding up the time to see a nutritionist, the MND specialist nurse said, “Why don’t we just train all the MND specialist nurses to give that nutritional information?” That way, the individual would not have to see a nutritionist at all. As a consequence, people no longer need to wait 22 weeks to get a feeding tube—they wait two weeks. That is a material difference that having more MND specialist nurses has made. It is important to recognise that not only is that increasing and improving the care for people living with MND, it is saving the NHS a tremendous amount of money. If we think about how many other conditions there are in Scotland where we argue the case for specialist nurses, what a difference it could make if we applied that preventative approach across the board.

Gordon gave me a passionate interest in MND and in trying to understand it, although very few people do understand it because we do not know why people get it and we do not know how to cure it. Wherever I travelled during the last Scottish Parliament election campaign, I tried to seek out MND sufferers. I met one woman when I was in the Western Isles, who was called Margie MacLeod. I do not know whether Alasdair Allan is in the chamber, but he may be familiar with her. She has sadly passed away since I met her during the election campaign last year. The Western Isles have a close affiliation with MND—in fact, the MND association in Scotland was founded by a guy called John Macleod, who was a Strathclyde police officer. He founded it in 1981 after becoming ill with the disease and it is much to his credit that that work continues to this day. Margie would tell me about how difficult it was to live with MND in the Western Isles. She would often have to travel to Glasgow to get treatment. Whether she could get that treatment or that service depended on how well she was that day.

Now, people see their MND nurse in the Western Isles far more regularly. There is an MND nurse in Orkney; there is an MND nurse in Shetland. There are 10 people in Shetland with MND and they have a nurse who is able to help them live their lives because Gordon argued for that, this Parliament listened to him, and those roles are now in place.

I will say to the cabinet secretary, however, that there are still problems in the islands in relation to MND patients being able to access services around ventilation. They still have to travel to the mainland to be assessed for their ventilators and if they are not well enough to do that, they cannot get that help. If the cabinet secretary could ask her civil servants to examine other means by which people could get that help, that would be greatly appreciated.

In the time that I have, I will put two more challenges to the Scottish Government. I became very aware, following Gordon’s campaign, that we have a big problem with the information technology system in the NHS. Primary care does not talk to secondary care, which is a real problem, because an MND nurse who is with a patient cannot update the patient’s medical file. The nurse has to write up whatever the latest developments are and send the information to the patient’s general practitioner. Only the GP can put the information on the computer. If that does not happen fast enough and that MND patient gets ill, they can end up in hospital but the latest information is not on those computer systems for the doctors to respond to. Surely in an age when we can get a man on the moon, we can have a care system where one IT system can speak to the other IT system. I know that the Government is looking at that issue but perhaps it needs to increase pressure around it.

The worst scenario in that particular situation, cabinet secretary, is that people can put together palliative care plans—plans on how they would like to die—with their MND nurse but the plans do not get to the GP. Suddenly there is a crisis, an ambulance is called, and a patient ends up in the intensive care unit and dies in a hospital bed when there is a palliative care plan that allows them to die at home, the way that they want to. That is all because the computer says no. Surely we can do better than that?

The final challenge that I would put to the Scottish Government is about ambulances. Currently not every ambulance in Scotland has a key information summary, or KIS, system built in, so not every ambulance driver can look up a patient’s name and see the information that is available about their medical history. I know that the Government has plans to increase that scheme, but could the cabinet secretary tell us today by what date the Government would like to ensure that every single ambulance has that KIS system?

Finally, I have one thing to say about disability. Gordon taught me a lot during the time that he was ill, and I reflected on much of that in the speech that I gave at his funeral on Saturday. However, one thing that I did not manage to get in was about his attitude to disability and how politicians talk about disability. Rather than paraphrase what he said, I will just read it out. I will end after this direct quote of an article from The Sunday Times, which Gordon wrote in the context of the Paralympics:

“And while branding Paralympians as ‘superhuman’ might seem positive, it unhelpfully suggests success equals beating disability. It paints a partial, rose-tinted picture of what it really means to be disabled. The reality is all disabled people are forced to be superhuman—Paralympian or not—because of the inaccessible world and anti-disabled attitudes we must battle every day simply to exist. The taxi driver who refuses to pick you up because you are in a wheelchair. The restaurant up a flight of stairs. The pub with no accessible loo. Day after day, that takes record-breaking resilience.

It is time for a new narrative. We get the body we are given and no amount of positive thinking or screaming “Yes I can” will change that—boy, I wish it could.

Let’s stop portraying disability as something that has to be conquered. Let’s remember that it takes superhuman levels of strength to accept what you cannot do. And let’s start a new story where success comes in many shapes and forms, and where the onus is on society to tear down the barriers that disable us.”

What a great challenge for the Parliament.

I move amendment S5M-04122.1, to insert at end:

“; recognises that MND is a terminal illness for which there is no cure, and believes that there is every possibility that a cure could be found by ground-breaking clinicians and researchers in Scotland, working collaboratively with experts across the globe.”

[Applause.]