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11.3 pm

The Minister of State, Department of Health (Mr. John Hutton): I start by once again--we have been here before--congratulating the hon. Member for Sutton and Cheam (Mr. Burstow) on bringing forward this subject for our debate tonight. The hon. Gentleman has shown on many occasions that he takes a close interest in these issues, as many hon. Members do, and his knowledge and understanding of some of these issues clearly showed in his comments.

The hon. Gentleman was right to say that multiple sclerosis is one of the most common diseases of the central nervous system. It is estimated to affect between 80,000 and 90,000 people in the United Kingdom. Multiple sclerosis can be very difficult to diagnose and treat, and at present there is no conclusive diagnostic test. The symptoms experienced by patients can be symptomatic of many other conditions.

Multiple sclerosis often strikes people when they are young adults--the peak age of onset is between 20 and 40--and is thought to arise from damage to the myelin sheath around nerve fibres that help conduct nerve impulses efficiently through the central nervous system. When such damage happens, disabilities can vary from impairment to speech, vision and movement to incontinence, as the hon. Gentleman said, or even severe paralysis.

The disease course in multiple sclerosis is unpredictable. People most often present initially with relapsing-remitting MS, in which relapses or acute attacks of neurological disability are followed by periods of remission. Later, as chronic problems accumulate, the disease may become more progressive, with more acute relapses. Management of MS therefore involves treatment

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of relapses caused by increased disease activity, and a care programme to minimise and control specific problems such as spasticity, bowel and bladder problems.

The different phases of the disease mean that people with MS have a wide range of health and other needs and that these needs, particularly for health care, will not remain static but will nearly always change over time. Patients with long-term conditions such as MS therefore require different levels of support and health care at different times. Most health authorities now have procedures in place to ensure that people with MS receive the treatment and care that they need.

Everybody, wherever they live, expects fair access to the most effective treatments, and the Government are taking steps to improve consistency. The new policies are designed to improve the quality of care and treatment that the NHS offers its users, to improve access and equality, and to ensure that service users have a greater say in what services are provided and how they are delivered.

There are now real opportunities to develop innovative care approaches for people with long-term care needs. We have introduced long-term service agreements built on pathways of care. The agreements will link primary care, secondary care and social care where appropriate. We expect that to be a better approach for people with long-term conditions such as MS. Discussions about care pathways will involve users and carers as well as health service professionals. Care pathways are expected to include an appropriate range of preventive, diagnostic, palliative, rehabilitative and supporting care components that are intended to produce an integrated programme of care for the individual service user. The care pathway approach will be particularly helpful for long-term medical conditions where, following accurate and timely diagnosis, a patient's care will generally be managed outside an acute setting. That is likely to be the case for many neurological conditions, including MS.

The development of such pathways reinforces the need for seamless working between health, social services and other agencies such as those involved in housing. People with illnesses such as MS know only too well how failures to deliver the right package of care can produce frustration and unnecessary difficulties in the daily activities of living. The hon. Gentleman referred to the problems that his constituent has experienced, and we take those issues very seriously.

Solving such long-standing problems means that care agencies must work more closely together to ensure that treatment and support systems operate in ways that help people to lead active lives. That includes making sure that they are able to work as long as possible--retaining people with health problems in their jobs is another priority for the Government. Health and social services are expected to play their part in helping people to stay at work as part of our welfare to work programme. The flexibilities created by the Health Act 1999 will enable health and social services partners to provide more joined-up care to MS sufferers and other groups of patients. I very much hope that health and local authorities, including those in the hon. Gentleman's constituency, take advantage of the new opportunities.

I know that some NHS services in the recent past have been the cause of concern to voluntary organisations dealing with neurological disease. Indeed, last year, the

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Multiple Sclerosis Society published "A Survey of Multiple Sclerosis Provision in England 1998-99". The survey was designed to establish how commissioners approach provision of MS services and to build a picture of service provision in England. It is true to say, as the hon. Gentleman did, that a somewhat mixed picture of MS service provision emerged.

The Multiple Sclerosis Society organised a very successful lobby of Parliament last Wednesday where it highlighted some of the results of a forthcoming survey on community provision, which is expected in the summer. I understand that the survey shows that as many as one in four people with MS do not receive any community care services at all and that a majority did not receive either written information or specialist support at the time of diagnosis. That is clearly unacceptable, and I hope that that is not the case with people who have been diagnosed recently. The society has, together with people with MS and the National hospital, also developed comprehensive guidance on standards for the provision of health care for people with MS.

Other changes, such as the introduction of a small number of regionally commissioned specialist services and the move towards primary care group commissioning, have raised further anxieties among neurological voluntary organisations that neurological services will not receive proper attention during the new commissioning process and that the services might be commissioned by people with insufficient knowledge of neurology to ensure that services meet neurological patients' needs.

To address those anxieties, a compendium of good practice on the commissioning of neurological services is being developed. The compendium is pulling together all the good practice that has been produced by many of the voluntary organisations in the neurological field and will act as a single, succinct source of information for health care commissioners.

Mr. Burstow: On this issue, as with all the developments that the Minister has outlined so far, groups outside the House will most want to hear about time scales. When will the compendium be ready?

Mr. Hutton: I am afraid that I cannot be specific about when the compendium will be available. Obviously, I hope that it will be ready as soon as possible. I hope that the hon. Gentleman understands that a lot of work has to go into that, and obviously the only point in drawing up a compendium is to get it out to the health service as soon as possible. We do not initiate such projects simply to amuse ourselves; we do it for a purpose, which is to improve the commissioning of health services. We have actively engaged neurological voluntary organisations such as the MS Society in that work and they have made a substantial contribution to its development.

As I have already said, the commissioning compendium has direct patient involvement in its development. Such involvement has always reflected best practice, and now the Government are seeking to make it standard practice, not just in the development of national policy but in the commissioning of local services. I am pleased that the MS Society is working with the NHS to develop specialist MS nursing schemes.

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The hon. Gentleman did not refer to research--I perfectly understand why--which is important in supporting the policy developments for which he and others are calling. He will be aware that the Medical Research Council spent approximately £640,000 on multiple sclerosis in 1998-99. The MRC also gives considerable additional amounts to fund basic underpinning research on issues such as nerve function and damage, which are not included in the figure of £640,000.

Another area of considerable interest to many people with MS is the therapeutic use of cannabis. The Department of Health supports the evaluation of the therapeutic use of cannabis by clinical trial, and is working closely with the Royal Pharmaceutical Society to put research on to a better scientific footing. In the short term, that has led to an MRC grant of almost £1 million being awarded to the neurology department of Plymouth hospital NHS trust to undertake a multiple randomised controlled trial of cannabinoids on spasticity in multiple sclerosis. The trial will recruit 660 patients with MS from throughout the country who have significant spasticity in some of their leg muscles. The hon. Gentleman might be interested to know that it will be the largest single study of symptom treatment in MS ever undertaken in this country.

I am sure that the hon. Gentleman will be interested to hear also that we are supporting a particularly important study being undertaken by Dr. Jeremy Hobart of the Institute of Neurology. Its aim is to develop a patient-based measure of outcome in patients with MS for use in clinical trials and clinical audit. To guarantee that the measure is appropriate and clinically useful, MS patients are central to the development process. The project is costing some £160,000. It started on 1 November 1997 and is due to end this April. The overall aim of the health technology assessment programme is to ensure that high-quality research information, cost- effectiveness and the broader impact of health technologies are properly assessed.


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