Chamber
Plenary, 22 Mar 2007
22 Mar 2007 · S2 · Plenary
Item of business
Duchenne Muscular Dystrophy
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 condition that strikes in childhood and which predominantly affects young boys. All such conditions have a common thread—they are all relatively rare in population terms and they tend to be the Cinderellas of the NHS, because its focus is inevitably on the more common diseases that affect the bulk of the population.
The needs of the groups of people who suffer from such conditions are similar. Medical research into the causes needs to be stepped up and better support services and equipment must be provided. Advice from specialist nurses and physiotherapists, adaptations to housing on the recommendation of occupational therapists and, in the case of DMD sufferers who also have learning difficulties, the support of specialist teaching staff can all make a tremendous difference to quality of life and, as the motion suggests, can enhance life expectancy.
In preparing for the debate, I read the Muscular Dystrophy Campaign's daily living factsheet, which made it clear that boys with DMD do best when they are educated in school and that, with careful planning, it is possible to ensure that a child's time at school can enhance his range of experiences and quality of life and provide opportunities to enjoy a wide variety of activities and develop friendships. Without that, life for these children can be very restricted and isolated.
Many boys with DMD have done very well at school, passing exams and even attaining university degrees. Some move on to jobs and many gain enormous pleasure from swimming, reading, painting, playing musical instruments or operating computers. However, such achievements are possible only if their talents and abilities are recognised and supported from an early age. Scotland is clearly some way behind other countries in that respect. As a result, the choice of school—mainstream or special needs, day school or boarding school—is important. The fact that pupils with DMD have different needs should be taken into account when their education is being planned, although it is reckoned that, with the right planning, most boys can be educated in a local mainstream school.
Future planning is also essential to ensure that, as the condition progresses, the necessary facilities, equipment and support are readily available. Regular reviews and assessments are therefore required and, as the children grow, there should be early planning for transition between schools or to college. Moreover, children should not just become the passive recipients of care; they must be allowed to develop independence of thought and given the freedom to make choices.
Social integration is another essential ingredient of a happy, fulfilled life, and ensuring that that takes place will prove easier the earlier a child can be integrated into school. Although life can be very hard for sufferers, parents, teachers and friends, it is clear that with a positive attitude, appropriate training and proper support, most children will be able to enjoy their time at school. They certainly deserve no less.
As most children with DMD will, by the age of 12, need to use a powered wheelchair at least some of the time, I want to touch on the issue of wheelchair supply. Although the minister's announcement this week of £1 million of interim funding for the wheelchair service in Scotland was very welcome, if long overdue, I have been told by the NHS wheelchair steering group that that is not enough to satisfy demand and that a £2.5 million shortfall in 2004-05 might rise to more than £3 million this year. There is a fear that future upgrading of funding could now be put on the back burner, which will allow provision to slip again.
According to the steering group, wheelchair services must be considered in the forthcoming spending review and should be properly funded thereafter. I hope that the minister will give that commitment this evening in the interests not only of the DMD sufferers for whom I am principally speaking but of the many people with chronic neuromuscular conditions who might need appropriate modern wheelchairs to achieve mobility.
I thank Sylvia Jackson for initiating this debate and support her motion.
The needs of the groups of people who suffer from such conditions are similar. Medical research into the causes needs to be stepped up and better support services and equipment must be provided. Advice from specialist nurses and physiotherapists, adaptations to housing on the recommendation of occupational therapists and, in the case of DMD sufferers who also have learning difficulties, the support of specialist teaching staff can all make a tremendous difference to quality of life and, as the motion suggests, can enhance life expectancy.
In preparing for the debate, I read the Muscular Dystrophy Campaign's daily living factsheet, which made it clear that boys with DMD do best when they are educated in school and that, with careful planning, it is possible to ensure that a child's time at school can enhance his range of experiences and quality of life and provide opportunities to enjoy a wide variety of activities and develop friendships. Without that, life for these children can be very restricted and isolated.
Many boys with DMD have done very well at school, passing exams and even attaining university degrees. Some move on to jobs and many gain enormous pleasure from swimming, reading, painting, playing musical instruments or operating computers. However, such achievements are possible only if their talents and abilities are recognised and supported from an early age. Scotland is clearly some way behind other countries in that respect. As a result, the choice of school—mainstream or special needs, day school or boarding school—is important. The fact that pupils with DMD have different needs should be taken into account when their education is being planned, although it is reckoned that, with the right planning, most boys can be educated in a local mainstream school.
Future planning is also essential to ensure that, as the condition progresses, the necessary facilities, equipment and support are readily available. Regular reviews and assessments are therefore required and, as the children grow, there should be early planning for transition between schools or to college. Moreover, children should not just become the passive recipients of care; they must be allowed to develop independence of thought and given the freedom to make choices.
Social integration is another essential ingredient of a happy, fulfilled life, and ensuring that that takes place will prove easier the earlier a child can be integrated into school. Although life can be very hard for sufferers, parents, teachers and friends, it is clear that with a positive attitude, appropriate training and proper support, most children will be able to enjoy their time at school. They certainly deserve no less.
As most children with DMD will, by the age of 12, need to use a powered wheelchair at least some of the time, I want to touch on the issue of wheelchair supply. Although the minister's announcement this week of £1 million of interim funding for the wheelchair service in Scotland was very welcome, if long overdue, I have been told by the NHS wheelchair steering group that that is not enough to satisfy demand and that a £2.5 million shortfall in 2004-05 might rise to more than £3 million this year. There is a fear that future upgrading of funding could now be put on the back burner, which will allow provision to slip again.
According to the steering group, wheelchair services must be considered in the forthcoming spending review and should be properly funded thereafter. I hope that the minister will give that commitment this evening in the interests not only of the DMD sufferers for whom I am principally speaking but of the many people with chronic neuromuscular conditions who might need appropriate modern wheelchairs to achieve mobility.
I thank Sylvia Jackson for initiating this debate and support her motion.
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.