Meeting of the Parliament 26 April 2017
I welcome members to what has become known as Stacey’s Scottish Parliament MS awareness week debate. My colleague Gordon MacDonald says, “You say that every year.” That is because I have been happily married for 21 years and I know my place.
Last year, we were not able to have a debate on the subject because of the Scottish Parliament elections, but the cross-party group on MS has always been extremely focused. Ever since it was first convened, we have set goals for what we can achieve. Over the years, we have debated many issues that affect people who live with MS. In recent years, we have debated the devastating impact of the Tories’ so-called welfare reform, through which people with MS have been singled out by the Westminster Government.
This year, I want to talk about the work of specialist MS nurses, who are a very important support for everyone who has MS—indeed, many cite their MS nurse as their key contact for treatment, care and support. Before I go on to talk about their work in more detail, I want to talk about multiple sclerosis in general and how it is an important part of the lives of Stacey and me.
As I have said in just about every debate that we have had on the subject, MS does not define Stacey and me as a couple. It is true that Stacey has had an incurable condition since she was 16 years old, but no one talks about her as “that woman with MS”. In fact, the opposite is true. Recently, Stacey has explained to people that she is a vulnerable adult. Technically, she is, but to her disappointment, people whom she knows and colleagues tend to laugh when she mentions it, because no one sees her that way. No matter how bad her disability gets, no one really sees her as a vulnerable adult. I know that that irritates Stacey, but I think that it is a great compliment to her fighting spirit. She never backs off from a challenge or—unfortunately for me—a fight.
On 9 June this year, Stacey and I will have been married for 21 years. I am led to believe that the local bookies in Paisley gave odds against us lasting six months, but here we are—we proved them all wrong. On the day of our marriage, Stacey walked down the aisle; today, she is more likely to be seen buzzing about the Parliament in her scooter. Life has changed, but her spirit has not.
On that day 21 years ago, my mother-in-law, Rosemary, said that I was always a very likeable young man. [Interruption.] Mr Dey has not heard the punchline yet. She said that I was not what she wanted for her daughter, but that I was a very likeable young man. I probably did not help on that occasion by giving her absolute pelters in my groom’s speech.
How have we dealt with all the challenges that we have faced over the years? Well, as the old song goes, “Love grows where my St Mirren goes.” I will probably pay for that later, because my mother-in-law is called Rosemary. We have taken on board the mantra “One town, one team” to such an extent that, along with Gordon Scott and 1,300 other fans, we bought the team. We might have had to deal with the many ups and downs of that great team, but it is a love that we both share. The tie that I am wearing is the limited edition anniversary tie that celebrates St Mirren’s great Scottish cup win 30 years ago. On Saturday, we will both be at the Paisley 2021 stadium. It is probably our friends from football who have noticed the biggest difference in Stacey’s condition. We have gone from sitting among all our friends in the stadium to having to ensure that we can get access for Stacey’s wheelchair—but that is a completely different issue for a different debate on another day.
As Stacey’s condition has progressed, her reliance on her MS nurse has become greater. Multiple sclerosis is such a complex condition that everyone’s symptoms are different, so it is necessary to have the specialist care that an MS nurse provides. There are always new treatments available, but unless a person has access to that expertise, they may miss out. The MS nurse can monitor a person’s condition and help to ensure that, when they meet their consultant, they get more out of the meeting.
The current problem is that there are not enough MS nurses in Scotland. There are 11,000 people in our country living with MS, and they need that specialist support. The MS Trust recommends a sustainable caseload of 358 people with multiple sclerosis per full-time specialist nurse. At present, only five of the 11 mainland health boards are deemed to have sustainable MS specialist nursing provision. Across Scotland, that is currently 25.9 full-time equivalent MS specialist nurses. For once I can say that Greater Glasgow and Clyde NHS Board has a good record—as the MS Society has said, it has recommended a sustainable model of MS specialist nurse case load that is actually more than that board currently needs. However, that is not the case in other areas.
The very idea of the MS nurse plays into the important role of self-management policies that the Scottish Government promotes. The MS nurse helps to reduce acute admissions through monitoring and understanding of the condition. The situation has changed dramatically since Stacey was diagnosed 28 years ago. The Scottish multiple sclerosis register’s national report in 2016 showed that 63 per cent of newly diagnosed patients had contact with an MS nurse specialist within 10 days of their diagnosis. That provision can be patchy throughout Scotland, which raises concerns about capacity in MS nursing provision and the levels of support that MS nurses are given to do their job. I understand that neurological standards are being reviewed at the moment, and I look forward to the MS Society playing a leading role in helping to shape future provision, because its expertise will be vital.
One problem area is NHS Lanarkshire, which recently had only one MS specialist nurse to deal with 1,200 patients—well in excess of the recommended 358 patients. She has since moved on to another role—within the MS community, luckily—and works with Revive MS Support in Glasgow. However, that leaves no provision for anyone in Lanarkshire who has MS. That situation must be addressed. NHS Lanarkshire, for its part, has been unhelpful when the cross-party group has asked questions about updates on the current position. In NHS Lothian, there are two MS nurses who have a caseload of 1,200 patients. That is still too much for them, but it is better than the situation in NHS Lanarkshire.
When she was asked in a recent MS Society Scotland video what her MS nurse means to her, Stacey said: “She helps me, she gives me valuable advice and we have a laugh when we shouldn’t.” Those specialist nurses are a resource that we must keep, because they will in the long term save our national health service money. They will continue to work with families who are living with MS and help to manage that horrible condition by ensuring that people with MS get access to disease-modifying drugs—DMDs—that will improve their quality of life.
As I said, MS affects more than 11,000 people in Scotland; it is often painful and exhausting and can cause problems with how people walk, move and see. With Stacey’s condition, I think that I have mentioned that two weeks after we were married, she turned round to me one day and said, “George, I can see two of you at the moment.” I said, “Life just gets better and better for you, Stacey.” MS can also affect how people think and feel.
In MS, a coating around the nerve fibres called myelin is damaged; it is a condition that the person will have for the rest of their life. There is no cure, but the research is progressing fast and there is still hope that one day a cure will be found. I think that that will happen a long way into the future, but that will not stop Stacey and me living our lives. We will carry on fighting and arguing—I am sorry: that was not in the script. We will carry on for the rest of our lives, and for the next 21 years, watching St Mirren, crying about St Mirren, arguing about St Mirren, along with spending time with our family, our children and our beautiful grandkids. No matter what life throws at us, it will not get us down. We both have far too much to be happy about. [Applause.]