Hansard

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 dystrophy on people's lives, including those of family members.

I acknowledge the points that have been made by members across the chamber. The case has been made that enhanced medical research, better support services, better equipment and adapted housing can make a major difference to the quality of life of people with DMD and, indeed, can help to extend their lives. I want to respond positively on that range of issues. We, too, want to ensure that people in Scotland with this condition can live as well as possible and enjoy the best possible quality of life.

Elaine Smith was right to highlight the important question of why the life expectancy of those with DMD in Scotland has been poorer than that elsewhere. As the commonest cause of death in such cases is respiratory failure, aggravated by scoliosis of the spine, our focus in improving survival rates must be on spinal and respiratory care.

Through the Scottish molecular genetics consortium and local genetic counselling services, all affected Scottish families now have access to the necessary molecular genetic tests, which are essential to allow diagnosis to take place as soon as possible. We have carried out a review of genetic services to consider how we might improve access to highly specialised expertise and ways in which we can supplement the voluntary sector in providing user-friendly information and resources, such as family care advisers. A key recommendation of the review was on the appointment of a clinical geneticist and a physiotherapist with expertise in genetic neuromuscular disorders. We have now approved funding for those posts as part of a two-year demonstration project in the first instance, and we hope to make appointments this year. The posts will have a pan-Scotland remit to standardise patient care protocols and improve equity of access to diagnosis and treatment.

Elaine Smith mentioned the importance of the Scottish muscle network in improving treatment. Although there is still much to do, it is worth acknowledging the positive impact that the network has had since its inception in 1999. The network aims to improve the care of everyone in Scotland with a neuromuscular condition regardless of where they live by ensuring that they have access to local health, social care and education professionals who know about their condition and its complications. The network has also been working with respiratory physicians to develop a respiratory care strategy for muscular dystrophy that is standardised and equitable throughout Scotland. There has also been significant investment in the national service for the treatment of scoliosis, which has helped to increase capacity and reduce waiting times for the service and which is a start in reducing the impact of scoliosis on those with DMD.

Improvements have been achieved. One or two members mentioned that, since the establishment of the Scottish muscle network in 1999, the death rate has halved, which is significant, and the rate of survival beyond the age of 18 has increased threefold. That is not to say that we are complacent—far from it. Significant further improvement is required if Scotland is to achieve survival rates and quality of life that are comparable with those in other places. However, progress has been made and we want to continue in that direction.

People with muscular dystrophy of all types will benefit from the approach to the management of long-term conditions that we set out in "Delivering for Health", which describes a model of care in which services are provided as locally as possible and which regards patients and their carers as partners in the delivery of their care. Several members highlighted the issue of whether people with DMD will be able to stay at home. Clearly, the direction of travel that we set in "Delivering for Health" is that we want to enable people to do that wherever possible. As a consequence of the changes in priorities in the health service that arise from "Delivering for Health", we want people to have an increased ability to remain at home.

Community health partnerships have a role in ensuring that NHS services are offered and delivered in an integrated way that responds to the individual's needs. Those with complex and frequently changing needs should have a key person who is charged with actively managing and co-ordinating all their care needs. A single shared assessment can help to co-ordinate a package of equipment and adaptations—members have mentioned that issue—which may come from health, housing and social care services. In that context, consideration of the person's home environment should become a routine part of the assessment process. "Getting it Right for Every Child" aims to ensure that children and young people and their families obtain support when they need it, through integrated working, joint assessments and better information sharing among agencies. That has a clear and direct relevance to the conditions that we are discussing.

Last month, we published the rehabilitation framework, which aims to help to equip patients and their carers with the skills that they need to manage their condition more effectively. For example, children with DMD can access community rehabilitation teams—specifically, physiotherapy services—either in specialist or in mainstream schools. For young adults with DMD, the rehabilitation framework should ensure that those services can be accessed at home. I hope that the framework's promotion of the use of assistive technologies will make them more readily available to people in future.

One or two members asked about the Housing (Scotland) Act 2006. The act will give all disabled people in Scotland a right to mandatory assistance for adaptations to their principal home and will allow ministers to specify the circumstances in which assistance must be in the form of grant. It removes the current statutory cost limit, allowing local authorities more freedom to assess the level of assistance that is needed. I hope that that produces benefits for many people.

Equipment has an important role to play. Some members mentioned that a review of national health service wheelchair and seating services has been carried out, to which the Executive responded formally in January. One of the key recommendations is that the wheelchair assessment process should clearly document the optimum rather than the minimum equipment requirements, to ensure that user and carer needs are met. I was pleased that, as Nanette Milne mentioned, we were recently able to provide some short-term interim funding to assist the wheelchair services. I can confirm that the wider recommendations in the review, with their larger financial implications, will be subject to the spending review later this year. I expect that they will be given full consideration in that context. However, it is not simply a case of waiting until those large-scale financial decisions are made. There are ways in which local services can respond quickly to the review—I look to them to do that.

We are working hard to ensure that services for people with a neuromuscular disorder are properly integrated; delivered by a multidisciplinary team; provided as close to people's homes as possible; and delivered in a way that is responsive to each person's needs. There is further encouragement to be had from the medical and genetic research that is under way internationally, giving hope to the families concerned.