§ Mr. HancockTo ask the Secretary of State for Health (1) what targets are being set to reduce diagnosis time for people suffering from motor neurone disease; and if he will make a statement; [100101]
(2) what assistance is available from the NHS for people suffering from motor neurone disease; and if he will make a statement. [100105]
§ Jacqui SmithA wide range of services which are tailored to suit individual needs are required to support people with motor neurone disease (MND). National health service services provided include physiotherapy, occupational therapy, speech and language therapy and augmentative communication, mobility aids and district nursing support. In the later stages of the disease, the following interventions may also be required: enteral feeding (for severe dysphagia), domiciliary or hospice care and ventilatory support, including mechanical ventilation and tracheostomy.
The National Institute of Clinical Excellence (NICE) has reviewed the evidence of the clinical and cost effectiveness of Riluzole for MND. NICE has advised that Riluzole (marketed as Rilutek) should be made available in the NHS as one component of the management of those people with the amyotrophic lateral sclerosis form of MND.
There is no specific test for MND and it may be difficult to diagnose with certainty in the early stages of the disease, because the patterns of symptoms varies between individuals and may be similar to those seen in other conditions. However, a great deal of research work is being carried out, and encouraging advances are being made in understanding both the disease process and the way motor neurones function.
We are developing a national service framework (NSF) for long term conditions, which will have a particular focus on neurological conditions. It is scheduled for publication in 2004 and implementation from 2005. The national service framework will help to drive up standards and improve the quality of and access to care for people with neurological conditions like MND.
§ Mr. HancockTo ask the Secretary of State for Health when he plans to place motor neurone disease in the national service framework; and if he will make a statement. [100102]
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§ Jacqui SmithThe national service framework (NSF) for long-term conditions will focus on neurological conditions, including motor neurone disease and brain and spinal injuries. It will also tackle some of the common issues, which are relevant to a wider range of people with long-term conditions generally and help to drive up the quality of treatment and care.
We have appointed an external reference group and working groups to take forward detailed development of the NSF. One of the groups is looking at areas where standards might be set along the patient pathway for people with progressive conditions, including motor neurone disease. People with clinical expertise and experience in dealing with motor neurone disease and from the Motor Neurone Disease Association are represented on this group. They will ensure that the needs of people with motor neurone disease are considered during development of the NSF.