HC Deb 15 February 1999 vol 325 cc703-12

Motion made, and Question proposed, That this House do now adjourn.—[Mr. Kevin Hughes.]

10 pm

Mr. Paul Burstow (Sutton and Cheam)

I am pleased to initiate this debate on the treatment of multiple sclerosis sufferers. I sought it because I believe that the way in which the national health service cares for MS sufferers is a crucial test of some of the Government's NHS reforms. As things stand, MS sufferers get a poor deal from the NHS and, for want of joined-up policy making, taxpayers' money is being spent on sustaining dependency rather than on promoting independence.

I have not sought this debate simply to raise concerns about the postcode rationing of beta-interferon, although I have some questions on that. I hope that the Minister will give the House, and many thousands of people outside, a sense of the Government's approach and attitude to the treatment of MS. In that context, beta-interferon is only part of the picture. There is also a need to address diagnostic services, rehabilitation and nursing services.

MS is a disease of the central nervous system and the most common disabling disease among young adults. This week alone, 50 people will be diagnosed with it. The symptoms often result in problems with mobility, vision, speech and fatigue, and can cause severe pain. One thing is certain about MS: the unpredictability of how it affects people's quality of life.

Because MS is both degenerative and multi-symptomatic, it requires a co-ordinated, multi-agency approach. The sad fact is that services for MS and MS sufferers are subject to wide geographical variation. The variation in availability of service between one postcode and another was confirmed last year in research by the Association of Quality in Healthcare. It found that few health authorities know how much beta-interferon they are funding or how many patients are eligible for treatment in their areas, and showed that most under-prescribe. Even more disturbingly, it revealed that few health authorities work through specific contracts or have detailed service specifications in respect of MS.

All those findings confirm the anecdotal evidence that many hon. Members will have encountered in their casework and surgeries that services are poorly organised and planned. An open letter from a group of 16 distinguished neurologists published in November stated: We believe that the National Health service has failed to respond adequately to the needs of people with MS and that services to them, with some shining exceptions, are seriously deficient in most parts of the country. In this short debate I want to cover three issues: prescribing, other services for MS sufferers, and cost-effectiveness, which seems to inform much of the Government's thinking on the issue. Guidance on prescribing beta-interferon was issued by the previous Government to health authorities in 1995. It suggested that it should be prescribed only by neurologists; and that patients should be over 18, have the relapsing-remitting form of the disease, and have had two attacks in the past two years. Finally, patients should be able to walk.

While it is difficult to obtain hard numbers, it is estimated that some 800 people receive beta-interferon. That is about 1.5 per cent. to 2 per cent. of MS sufferers.

As I understand, as many as 10 per cent. of MS sufferers qualify and would benefit from such therapy. Indeed, evidence from trials suggests that treatment with beta-interferon can reduce the number of attacks by up to one third, increase the length of remission and reduce the progression of disability. Beta-interferon is not a cure for MS; nor is it a wonder drug. I acknowledge that it does not necessarily apply to every MS sufferer. However, far too many people who would benefit from it still do not have the opportunity to do so.

Mr. Andrew Lansley (South Cambridgeshire)

Is the hon. Gentleman aware that a distinguished clinical neurologist thought it appropriate that my constituent, Mrs. Jacky Boswell, should receive beta-interferon, but Cambridge and Huntingdon health authority denied that treatment purely on the grounds that it is not resourced sufficiently to do so?

Mr. Burstow

The hon. Gentleman has drawn attention to a problem that a number of hon. Members encounter. Constituency casework tells us that there are people for whom neurologists have recommended the prescription of the drug for whom—through no fault of their own or of their neurologist, and purely by dint of the fact that the local health service does not have sufficient resources—treatment cannot be provided. As a consequence, as I shall describe later, other parts of the welfare state wind up picking up the cost, and informal carers share the burden.

Prescribing patterns suggest that financial, not clinical, considerations are denying neurologists the freedom to prescribe, as the hon. Member for South Cambridgeshire (Mr. Lansley) rightly suggested. With the recent European licensing of beta-interferon to treat the more severe secondary progressive form of the disease, the need for clarity and direction from the Government is more urgent than ever. As Stephen Thornton, the chief executive of the NHS Confederation, said, To avoid the charge of postcode prescribing, we need urgent Government clarification. We need Government clarification not just of current prescribing for relapsing-remitting MS, but of future prescribing policy.

A series of statements and so on by Ministers has begun to call into question the efficacy of beta-interferon. Indeed, in November, the then Minister of State, the right hon. Member for Darlington (Mr. Milburn), said that the Department would be commissioning new research into the appropriate usage of beta-interferon, and we will be issuing new guidelines before too long to ensure greater national consistency in the uptake of the drug."—[Official Report, 10 November 1998; Vol. 319, c. 132.] I am sure that hon. Members on both sides of the House would welcome that, and hope that that guidance is on its way. In a subsequent written answer in response to a question that I tabled, however, the Minister said that there are still many unanswered questions about the drug's appropriate use.

In a letter to the hon. Member for North-East Derbyshire (Mr. Barnes) in January, which I am grateful to have had the opportunity to see, the present Minister of State said: There are still continuing doubts over the clinical and cost-effectiveness of the drug arising from soundly based clinical trials. Proposals for a national clinical trial into Beta-interferon are at an advanced stage, and a final decision will shortly be taken". Those statements raise some questions. I hope that the Minister can give some answers.

When will the new guidelines be issued, especially for the secondary progressive condition? Will beta-interferon continue to be available, albeit under the unsatisfactory regime, outside the rules of the proposed national trial? How long will the national trial last before new guidelines are published, in order that there may be greater consistency, which the Minister promised at the Dispatch Box only in November?

Secondly, as well as mapping the patchwork nature of prescribing, the Association of Quality in Healthcare study found inadequate planning, lack of consultation and poor management information—indeed, 46 per cent. of health authorities do not appear to contract for MS diagnostic, treatment or rehabilitation services. It is little more than a lottery whether a patient sees a neurologist who has specialist knowledge to deal with MS. That lack of planning cries out for a national service framework. Will the new National Institute for Clinical Excellence be given an early task: to consider MS services in the round—not just prescription—so that MS sufferers can be certain that they will receive a good standard of service no matter where they live?

The third issue is cost-effectiveness, which Ministers have often raised in their answers. Most assessments of the cost-effectiveness of beta-interferon examine only the health-related costs, but such a narrow approach overlooks the social care, social security and other costs that arise. Indeed, a study published in the pharmacoeconomics journal found that the bulk of the costs of managing MS in this country were borne by social services and general practitioners, not the health service. That pattern was also found in work done by the South and West Devon health authority. A study there compared the use of health and social care resources for two groups of MS patients.

Mr. John Burnett (Torridge and West Devon)

Will my hon. Friend give way?

Mr. Burstow

I had better not. I have already given way once.

The study compared a group of MS patients who were being treated with beta-interferon with a group to whom the drug had been refused. In just one of a number of case studies dealt with in that detailed research, it was found that the lost tax revenues and the increased benefit payments accounted for about £10,000. A further £2,500 was being allocated to cover social care costs during relapses.

The conclusion of the study was clear. The researchers stated: The study has been concerned to show that although the cash purchase price"— of beta-interferon— has proved an initial barrier to some potential NHS purchasers, when other factors are considered, the true 'cost' of the drug can be viewed in a more advantageous light. These include the quality of life of the patient during treatment, the impact on the use of resources in hospital and in the community, the effect of the disease on the families and friends of MS patients and the economic cost to the community as a whole. I hope that in future, when work on the subject is done by the Department, these other issues will be taken into the equation. I hope that the National Institute for Clinical Excellence, which I understand will consider cost-effectiveness as part of its work, will take that wider view, rather than just a narrow health-related cost view. On the basis of the evidence that I have seen, and according to those who are far better informed than I am, it is clear that the drug can make a difference.

I sought the debate tonight because of a number of cases that came to my attention in my constituency. I expect that other hon. Members are present to listen to the debate because of cases that have been brought to their attention. In preparation for the debate, I spoke on Friday last week to the chair of our local MS society to discuss some of the issues of concern to its members.

The local group has 140 members, including 90 sufferers of MS, none of whom are prescribed beta-interferon. Indeed, I was told that at least two had been told that they are eligible under the existing guidance, but that no money is available to pay for the therapy. They went on to say that the problem was not just the drug, but the lack of planning by the health authority and the lack of awareness of the everyday experiences of MS sufferers.

Because there is inadequate provision in the health service to fund the treatment, the cost ends up being borne in other parts of the welfare state. In effect, we are funding dependency, rather than shifting the resources to fund greater independence.

MS wrecks lives. It robs people of their independence. The NHS response is unplanned, unco-ordinated and underfunded. MS sufferers want to know whether the 1995 guidelines will be properly funded and properly enforced around the country, so that we do not have the rationing of drugs by postcode. MS patients want decent diagnostic and rehabilitation services. The number of people who are told that they suffer from MS and who are left to try to lead their lives without any support is a scandal. We must ensure that there is decent support for people's rights of employment and so on. Above all, people want some certainty in their lives. I hope that, tonight, the Minister can begin to give MS sufferers greater certainty that the Government are committed to their care, treatment and rehabilitation.

10.15 pm
The Parliamentary Under-Secretary of State for Health (Mr. John Hutton)

I congratulate the hon. Member for Sutton and Cheam (Mr. Burstow) on his good fortune in securing a debate on this timely and important subject. I express my gratitude to him for his thoughtful and clearly well-researched comments. I am sure that he will not object if I begin by putting some of his comments about resources in the right perspective. The hon. Gentleman will be aware that, over the next three years, an additional £21 billion will be spent on the national health service. That is a 4.7 per cent. real-terms increase in NHS spending. I hope that the hon. Gentleman will be aware also that the health authority in his constituency will be receiving an additional £25 million in funding next year. That is an increase of more than 6 per cent.

I say to the hon. Gentleman and to other hon. Members who are present—I am pleased to see so many right hon. and hon. Members taking an interest in the debate—that, within those overall budget figures, we expect expenditure on new drug treatments to increase significantly. We fully expect that a greater share of NHS resources will be spent on good-value new drug treatments over the next three years. I hope that the hon. Gentleman will not mind if I decline to accept his criticism of the Government record on investing in the NHS. I think that we can safely withstand any attack from the Liberal Democrats.

As the hon. Gentleman said, multiple sclerosis is a chronic, disabling disease which affects the central nervous system, causing damage to the nerves in the brain and spinal cord. It often strikes people when they are young. It is understood to arise from scarring and inflammation of the myelin sheath. This acts as insulation to the nerve fibres and helps conduct impulses through the central nervous system. When that happens, disabilities can vary from impairment of speech, vision and movement to continence problems or even complete paralysis. Because of its prolonged course, and the disability that can result from it, it is extremely distressing for those who suffer from the disease, and their families. It often has a profound effect on the lives of others in the family as well. We estimate that multiple sclerosis affects, as the hon. Gentleman rightly said, 80,000 to 90,000 people in the United Kingdom.

The disease course in MS is unpredictable. People most often present 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. Some people have the progressive form of the illness right from the start. Management of MS therefore involves a number of things, including treatment of relapses caused by increased disease activity, a proper care programme to minimise and control specific problems such as spasticity, bowel and bladder problems and fatigue, and specific treatment aimed at influencing the disease's progression.

People with MS have a wide range of health and other needs. These needs, particularly for health care, will nearly always change over time. Patients with long-term conditions such as MS require different levels of support and health care. An annual approach to their health care is not always appropriate. Our White Paper "The new NHS" presents us with good opportunities to develop innovative care approaches for people with long-term care needs, including those with multiple sclerosis. In the White Paper, we made clear our ambitions for a modern, dependable service that will provide first-class treatment and care for all those who need it. I want to make it clear at the outset that that applies just as much to those suffering from MS as to anyone else with long-term health care needs.

The recent consultation exercise on arrangements for long-term service agreements which we proposed in guidance on "Commissioning in the New NHS" will ensure that commissioning arrangements cover longer time scales of between three to five years instead of at present only one. In this guidance, our proposals for pathways of care will, where appropriate, link primary care, secondary care and social care, to which the hon. Gentleman referred. I believe that this is a better approach for people with long-term conditions such as MS. Discussions about these care pathways will involve users and carers as well as health professionals. However, we need to be realistic about making changes and we do not expect these new arrangements to happen overnight for all services, but to be developed on a rolling programme that replaces annual contracts.

Mr. Burstow

Listening to the Minister's speech, it is quite difficult to find the appropriate point at which to intervene. That being so, it may well be that he will be taking up the point that I am about to make. However, I seek clarification.

I referred to the fact that 46 per cent. of health authorities have no contracts and no clarity in their planning of delivery of services for MS sufferers. Is the Minister able to say specifically whether the National Institute for Clinical Excellence will be asked to undertake work in this area and provide a service framework to guide the pathways that he was talking about?

Mr. Hutton

I have some sympathy with the hon. Gentleman in respect of knowing what is the right place to intervene during an Adjournment debate, because it usually takes a bit of time to reach the specific points that have been raised. I can assure him that I will come on to the National Institute for Clinical Excellence, and—if he is okay with this—I shall refer to those issues when I reach that point in my remarks. The specific figure that he raised—that of 46 per cent. of health authorities not having any strategic approach to managing multiple sclerosis patients—is not one that I am familiar with. If he would like to make further representations to me, I should be happy to look into that.

We emphasised in the guidance that care pathways would be developed to cover a range of preventive, diagnostic, palliative, rehabilitative and supporting care components of an integrated programme of care. That applies in particular to long-term medical conditions where, following accurate and timely diagnosis, patient care will be managed outside an acute setting. That is likely to be the case for many neurological conditions and, given their complex nature, we plan to develop, with the help of the neurological voluntary organisations, a compendium of good practice on the commissioning of neurological services.

On services for people with MS, the hon. Gentleman will be aware that, last year, the Multiple Sclerosis Society published a survey of multiple sclerosis provision in England and a symptom management survey. The first survey was designed to establish how commissioners approach provision of MS services and to build a picture of service provision in England. The second looked at the experiences of a group of MS patients.

Under the present system, the organisation of health services, including services for people suffering from MS, and the manner in which they are delivered, are, quite rightly, matters for local health authorities. The move to new commissioning arrangements will achieve improvements in services for people with conditions such as MS. Longer-term agreements, reflecting dialogue between clinicians and focusing on health improvement and quality objectives, will increase the emphasis on programmes of care that cross the traditional boundaries to meet patients's needs best.

The White Paper "The New NHS" also underlines our commitment to working in partnership, which fully includes the voluntary sector. We are pleased to be supporting the MS Society in particular, under the section 64 scheme of grants, in respect of its emergent therapies project. The MS Society, together with the National Hospital for Neurology and Neurosurgery, have developed comprehensive guidance on standards for the provision of health care for people with MS. The society is offering formal recognition, as a benchmark of good practice, to centres and services that meet these standards. We very much welcome that helpful initiative.

Multiple sclerosis can have a profound effect on family life and, in particular, on the lives of people caring for family members or friends with MS. The Government recognise the vital role that carers play, which is why we announced a substantial new policy package for carers last week. That package will mean better information, better support and better care for carers. Families with a member suffering from MS should be able to cope more easily as a result of the additional help and support that they will now receive.

The NICE agitated the hon. Member for Sutton and Cheam quite extensively. Sometimes—MS is an example—there are few specific treatments available to treat a disease or condition. That means that health professionals need to arrange care packages that support, rather than cure or ameliorate, a condition. In such situations, there is naturally a great deal of interest in emerging therapies, but it can be difficult for individual clinicians and commissioners to make decisions about new therapies as they become available and to make themselves aware of all the pertinent evidence.

Mr. Kenneth Clarke (Rushcliffe)

I am grateful to the Minister for his courtesy in giving way. He is giving some helpful general information, but he has touched on the immediate point that is affecting a lot of people across the country. When an experienced consultant wants to prescribe specific treatment for a patient, and he thinks that that patient will benefit, is it justifiable for the health authority to refuse to finance all patients for whom he has prescribed? Is it right to restrict on financial grounds treatments recommended by experienced consultants?

Mr. Hutton

The right hon. and learned Gentleman will not be surprised to hear that I will come on to that part of my speech in a few minutes and I will deal specifically with the important point that he has made.

That is why we are setting up—

Mr. Burnett

Will the Minister give way?

Mr. Hutton

No, I will not. I have only six minutes left in which to respond to a number of points.

That is why we are setting up the National Institute for Clinical Excellence. The proposals for a new national institute mean that, for the first time, patients and NHS staff will be able to turn to a single authoritative source of clinical and cost-effectiveness advice.

Internal markets and the postcode lottery that they inevitably created were never an acceptable way to run a health service. NICE guidance will provide a common effectiveness foundation for the NHS to inform and assist decision making about care at all levels—national, local and individual. By identifying which new developments will most improve patient care, it will help spread good value new treatments across the NHS. That, in turn, will promote and encourage successful innovation and, by sorting out the wheat from the chaff, it will be able to target treatments on patients who will benefit most, as well as protect patients from outdated and ineffective treatment.

Guidance from the NICE does not remove the need to take account of genuine, good clinical reasons for tailoring the care provided to individual patients. That will always be an issue to discuss with the individual patient in the consulting room. Better-informed patients and professional staff can only help lead to better-quality care for everyone, wherever they live.

The hon. Member for Sutton and Cheam expressed concern over the availability of beta-interferon, both for patients with the relapsing-remitting form of the disease and for patients with the secondary progressive form. We need to be clear that complex issues are involved. There is certainly evidence that beta-interferon can benefit some patients, but it appears that only a small proportion of those receiving treatment benefit from beta-interferon and it is impossible to predict which patients are likely to benefit. That is why many professionals involved in providing or commissioning health care are genuinely uncertain whether beta-interferon treatment represents a responsible use of NHS resources.

Those are precisely the sort of issues that we have set up the new National Institute of Clinical Excellence to advise on. I am happy to confirm that, subject to the outcome of consultation on the discussion document that we issued last week, we are minded to refer beta-interferon treatment to the NICE as one of its priority tasks. I hope, therefore, that by later this year we shall have clear, authoritative advice on the role of beta-interferon in the treatment of patients with this most distressing condition— [Interruption.] I thought that the right hon. and learned Member for Rushcliffe (Mr. Clarke) was seeking to intervene again.

Mr. Clarke

I simply wanted to say that I am glad that the Minister got around to dealing with that point. I thought that he would not, but I am grateful for what he said.

Mr. Hutton

I do not want to turn this into a love-in, but I am grateful to the right hon. and learned Gentleman as well.

Many people are aware, too, of the use of a rather older drug by patients with MS—cannabis. The Government receive a lot of correspondence from people with MS about their problems with pain and how cannabis seems to help alleviate the symptoms. The hon. Member for Sutton and Cheam did not refer to the use of cannabis, but I thought that the House might welcome one or two comments about how we view the use of cannabis in these circumstances.

We are not unsympathetic to the plight of those who cannot be helped by existing medication and I can appreciate the desire of people with severe pain to explore every avenue to seek relief. However, it would clearly not be of benefit to those people for us to come to a hasty decision on such an important issue. At this stage, there is insufficient evidence to demonstrate the effectiveness of cannabis as a therapeutic agent.

I am sure that the hon. Gentleman appreciates that the Government cannot condone the use of an illicit drug with unproven therapeutic benefit. Under the Misuse of Drugs Act 1971, possession of cannabis is, and will remain, a criminal offence. However, the report published in 1997 by the British Medical Association, "The Therapeutic Use of Cannabis", surveys the scientific evidence to support the use of cannabis as a medicine. The report shows that there is no reliable, well-conducted research evidence to support the therapeutic use of cannabis.

The hon. Gentleman is probably aware that the Royal Pharmaceutical Society has been working to improve the quality of research methodology for cannabinoids—the unique constituents of cannabis. Any therapeutic effects that cannabis may have are thought to rest in cannabinoids. The society is undertaking work to see whether it can establish that cannabinoids have therapeutic benefits in controlling pain and in improving the functioning of people with MS. Successful completion of that work will lead to the publication of guidelines to help researchers produce methodologically sound results.

I should have liked to say much more, but unfortunately I shall soon run out of time.

We are providing significant funding in a number of different centres to support research on the treatment of MS in a number of ways. I assure the hon. Gentleman that that support and funding will continue. The fundamental point that he raised, however, concerned NHS resources and their use to support effective programmes for MS. As he would be the first to acknowledge, NHS resources are not limitless. Priorities still have to be set, but we are taking the necessary action to raise the quality of treatment and care to ensure a fair distribution of resources across the NHS and to end the postcode lottery, which became all too common under the previous Administration.

Those actions and many others will help improve the national health service and ensure that it responds more effectively to the needs of patients, including those who suffer from multiple sclerosis.

Question put and agreed to.

Adjourned accordingly at half-past Ten o'clock.