Chamber
Plenary, 22 Mar 2007
22 Mar 2007 · S2 · Plenary
Item of business
Duchenne Muscular Dystrophy
When I was a community paediatrician, I came across perhaps four or five cases—I was trying to count them—of boys who had Duchenne muscular dystrophy. I want to tell the story of one of them. I knew him from the moment of diagnosis, because he attended one of the schools for which I was responsible in my role as a school doctor. He immediately sprang to mind when I saw the motion for this debate, which I am glad is taking place.
The boy was first diagnosed at the age of about four and a half. He was in the nursery at the school that I attended. One day, the nursery teacher called me over and pointed him out to me. The boy's physical development was a bit slow, but he was walking and he seemed to run around with the other kids. However, he was clearly a bit different. His gait was awkward. He could not really jump and he could not brace himself to land if he jumped with both feet. As it was summer and the kids were outside playing, he had shorts on, so I could see that he displayed one of the classic signs of Duchenne muscular dystrophy in its early stages, which is that, although the muscles are weak, the calf muscles appear enlarged. They look like big muscles. I thought, "Oh, for goodness' sake, this looks bad."
Duchenne sufferers also have a characteristic way of getting up off the floor to stand. My heart sank when I saw that. The diagnosis was eventually confirmed in hospital—it is quite a simple diagnosis once the condition is suspected. A diagnosis of Duchenne muscular dystrophy is not just a matter of telling the parents that their child has a serious medical condition; it means telling them that their child has a completely different future from the one they thought they would have.
I could have mapped out what was going to happen. When the boy started primary school he could walk and he could just about keep up with his peers. Gradually, however, he could no longer manage the stairs, and we had to put in railings. We then had to put in ramps when he started to use a wheelchair. The journey that the boy took towards adolescence involved so many people, including doctors; physiotherapists; occupational therapists; the fire service—I will explain why in a moment; nursing staff; teaching staff; builders, who had to make the adaptations to the school and to the boy's house; and, primarily, the parents. This is where I will follow up something that Stewart Stevenson said. That normal, ordinary family, faced with a devastating diagnosis, showed the most amazing strength, and I will mention some of the ways in which they showed it later.
When the boy was due to transfer to his secondary school, it did not have a lift in it. Parts of it were on three floors, so we had to put a lift in. Nowadays, such a school would have been built with a lift, but it was an older building. The installation was carried out. By the way, that was where the fire service came in. An electric wheelchair is heavy. In a fire or fire drill, lifts cannot be used, but an electric wheelchair is much too heavy to bump down stairs. We had to get the fire service to show us how to evacuate the boy safely, which involved a special stretcher with straps on it that was kept at a particular place in the school. We might never think of having to do such things.
The boy had physiotherapy. There were issues around the use of the wheelchair and the need to get splints that fitted, that did not hurt and that kept pace with his growth. It was a labour-intensive process just to keep the boy going and to supply everything that was needed. Everybody showed great good will and tried to do what was required. However, there were many times when things could have gone wrong, simply because so many things were needed.
When the boy got an electric wheelchair—obviously, a child with a serious medical condition is entitled to transport to school on medical grounds—he did not avail himself of it often, but instead went with his pals and walked to school.
His parents showed immense strength. Their hearts must have been in their mouths when he was out on busy streets in his electric wheelchair. However, it was important to them that their son was socially integrated with his peers—and he was one of the crowd throughout his time at school. He was in a wheelchair, but he was very much one of the boys, which echoes what Stewart Stevenson said.
Research is very much needed, because although the number of sufferers is small, the diagnosis is devastating and there is no cure. We also need the basics to support the children, their families and everybody else who deals with them in the schools where they are taught, the houses where they life and the communities of which they are a part. The plea is not just for research money but for basic humanity in supporting these boys in their everyday lives, which should be as rich and full as possible.
The boy was first diagnosed at the age of about four and a half. He was in the nursery at the school that I attended. One day, the nursery teacher called me over and pointed him out to me. The boy's physical development was a bit slow, but he was walking and he seemed to run around with the other kids. However, he was clearly a bit different. His gait was awkward. He could not really jump and he could not brace himself to land if he jumped with both feet. As it was summer and the kids were outside playing, he had shorts on, so I could see that he displayed one of the classic signs of Duchenne muscular dystrophy in its early stages, which is that, although the muscles are weak, the calf muscles appear enlarged. They look like big muscles. I thought, "Oh, for goodness' sake, this looks bad."
Duchenne sufferers also have a characteristic way of getting up off the floor to stand. My heart sank when I saw that. The diagnosis was eventually confirmed in hospital—it is quite a simple diagnosis once the condition is suspected. A diagnosis of Duchenne muscular dystrophy is not just a matter of telling the parents that their child has a serious medical condition; it means telling them that their child has a completely different future from the one they thought they would have.
I could have mapped out what was going to happen. When the boy started primary school he could walk and he could just about keep up with his peers. Gradually, however, he could no longer manage the stairs, and we had to put in railings. We then had to put in ramps when he started to use a wheelchair. The journey that the boy took towards adolescence involved so many people, including doctors; physiotherapists; occupational therapists; the fire service—I will explain why in a moment; nursing staff; teaching staff; builders, who had to make the adaptations to the school and to the boy's house; and, primarily, the parents. This is where I will follow up something that Stewart Stevenson said. That normal, ordinary family, faced with a devastating diagnosis, showed the most amazing strength, and I will mention some of the ways in which they showed it later.
When the boy was due to transfer to his secondary school, it did not have a lift in it. Parts of it were on three floors, so we had to put a lift in. Nowadays, such a school would have been built with a lift, but it was an older building. The installation was carried out. By the way, that was where the fire service came in. An electric wheelchair is heavy. In a fire or fire drill, lifts cannot be used, but an electric wheelchair is much too heavy to bump down stairs. We had to get the fire service to show us how to evacuate the boy safely, which involved a special stretcher with straps on it that was kept at a particular place in the school. We might never think of having to do such things.
The boy had physiotherapy. There were issues around the use of the wheelchair and the need to get splints that fitted, that did not hurt and that kept pace with his growth. It was a labour-intensive process just to keep the boy going and to supply everything that was needed. Everybody showed great good will and tried to do what was required. However, there were many times when things could have gone wrong, simply because so many things were needed.
When the boy got an electric wheelchair—obviously, a child with a serious medical condition is entitled to transport to school on medical grounds—he did not avail himself of it often, but instead went with his pals and walked to school.
His parents showed immense strength. Their hearts must have been in their mouths when he was out on busy streets in his electric wheelchair. However, it was important to them that their son was socially integrated with his peers—and he was one of the crowd throughout his time at school. He was in a wheelchair, but he was very much one of the boys, which echoes what Stewart Stevenson said.
Research is very much needed, because although the number of sufferers is small, the diagnosis is devastating and there is no cure. We also need the basics to support the children, their families and everybody else who deals with them in the schools where they are taught, the houses where they life and the communities of which they are a part. The plea is not just for research money but for basic humanity in supporting these boys in their everyday lives, which should be as rich and full as possible.
In the same item of business
The Deputy Presiding Officer (Trish Godman):
Lab
The final item of business is a members' business debate on motion S2M-5521, in the name of Sylvia Jackson, on Duchenne muscular dystrophy. The debate will b...
Motion debated,
That the Parliament expresses concern that people who suffer from Duchenne Muscular Dystrophy (DMD), a severe and progressive genetic muscle wasting disease ...
Elaine Smith (Coatbridge and Chryston) (Lab):
Lab
I am pleased to speak to the motion in Sylvia Jackson's name, which I was involved in drafting. Unfortunately, Sylvia is unwell. She is upset at missing the ...
David McLetchie (Edinburgh Pentlands) (Con):
Con
Like Elaine Smith, I am sorry that Sylvia Jackson has apparently been dumbstruck by laryngitis and is unable to speak in this members' business debate on a m...
Stewart Stevenson (Banff and Buchan) (SNP):
SNP
Yesterday, we legislated with a glad heart to help sufferers from mesothelioma. In this important debate, we address the needs of a not dissimilarly sized gr...
Eleanor Scott (Highlands and Islands) (Green):
Green
When I was a community paediatrician, I came across perhaps four or five cases—I was trying to count them—of boys who had Duchenne muscular dystrophy. I want...
Mr Kenneth Macintosh (Eastwood) (Lab):
Lab
I thank Elaine Smith, Sylvia Jackson and all the members who are present for their work in bringing the debate to the Parliament and raising the profile of D...
Mrs Nanette Milne (North East Scotland) (Con):
Con
Chronic neuromuscular conditions often feature as subject matter for members' business debates, but this evening's debate is one of the few to highlight a co...
The Deputy Minister for Health and Community Care (Lewis Macdonald):
Lab
First, I must thank Sylvia Jackson, who is absent, and Elaine Smith for giving Parliament this opportunity to focus on the impact of Duchenne muscular dystro...
Meeting closed at 17:51.