Debate on MS Awareness Week

Clare spoke in the debate on MS Awareness Week, and talked about her constituent Sharon and her experience of MS. Full transcript below the video.

Transcript

Sharon is a woman with the same responsibilities as many of us. She works—she is a nurse—and, like many parents, she has to balance home life with work. She is also a cherished daughter, wife to her husband and mother of two wonderful children. But Sharon has MS, and that makes everything so much harder. She is in the public gallery today to watch this debate.

Although I have known Sharon for many years, this is the first time that she has told me what it is really like to live with MS. She said:

“The biggest issue I have found is people’s perception of what MS is. MS is an invisible illness, and I’ve had people say to me, ‘You don’t look disabled’, as I don’t use a wheelchair. They always expect you to be using a wheelchair. I suppose it’s hard enough, knowing that I have a disease that does significantly impact on my life and my family’s, but when other folk don’t see an obviously unwell person, they don’t recognise that the level of support required can still be significant.

What’s also difficult is that my family are always alert to my condition, and look for signs and symptoms that might mean my MS is getting worse.”

Sharon was diagnosed when her son was four years old. He has grown up always knowing that mum cannot do certain things. She has mobility issues and cannot always do the usual, simple things that a mum wants to do with her children, such as playing in the park or running after a ball. Sharon can struggle with things that other mums are lucky enough not to struggle with. Not only is that physically painful, but it takes an emotional toll, too.

Sharon also spoke about her experience of fatigue and “brain fog”, as she puts it, which is where concentration and focus become extremely difficult—that is all too common for those with MS. She has days when she feels fine, but also days when she can hardly move or focus. Most people have a reserve of energy that is used up throughout the day—especially for those juggling a home life and a job. However, for those with MS, that reserve can run out far more quickly than most people appreciate.

Sharon also feels pressure about benefit reviews and fitness assessments, and she is fearful that she will lose the blue badge that is vital for her work and her private life.

We should all work to make the lives of people like Sharon easier, not harder. MS affects 11,000 of our fellow Scots. As we have heard, it is a condition that impacts them not just physically, but mentally and socially. We in this chamber should listen to the voices of those, like Sharon, who live with MS, and we should learn what they need to make their lives easier.

I, too, am concerned that NHS Lanarkshire, which covers my constituency, is currently without an MS nurse. To have had a service based on one individual is not sustainable, as was evidenced when the one and only MS nurse in the area resigned her post. While I have been reassured that NHS Lanarkshire is looking to recruit two nurses, with the second post initially being funded by the MS Trust, that still leaves a gap in provision in Lanarkshire until those nurses are in place. However, both nurses will be paid at band 6, while MS Trust nurses throughout the UK are paid at band 7. In fact, NHS Lanarkshire is the only Scottish mainland NHS board that does not employ band 7 MS nurses.

The previous MS nurse in Lanarkshire had a case load of around 1,100, as we have already heard, while the MS Society says that a case load of around 350 is more realistic. Having two nurses in the service will still not be enough to meet the needs of people with MS in Lanarkshire, but it is at least an improvement.

For MS nurses to have career progression and for there to be succession planning in the field, health boards must look at their skills mix in such services and make them sustainable, so that they continue to be able to provide the service that those with MS deserve.

 

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