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Mr. O'Brien: The amendments merely ensure public access to information. I hope that they will have the support of the House.

Amendment agreed to.

Amendment made: No. 23, in page 40, line 5, at end insert--


'and (in the case of a donation falling within sub-paragraph (1A) of that paragraph) the details given in pursuance of that sub-paragraph.'.--[Mr. Pope.]

Further consideration adjourned.--[Mr. Pope.]

Bill to be further considered tomorrow.

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DELEGATED LEGISLATION

Industrial Organisation and Development

Motion made and Question put forthwith, pursuant to Standing Order No. 118(6) (Standing Committees on Delegated Legislation),


Question agreed to.

Northern Ireland

Motion made, and Question put forthwith, pursuant to Standing Order No. 118(6) (Standing Committees on Delegated Legislation),


Question agreed to.

SUPPLEMENTARY VOTE ON ACCOUNT 2000-01

Motion made, and Question proposed,


Hon. Members: Object.

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Multiple Sclerosis

Motion made, and Question proposed, That this House do now adjourn.--[Mr. Pope.]

10.48 pm

Mr. Paul Burstow (Sutton and Cheam): It is a little over a year since I last secured an Adjournment debate on the subject of multiple sclerosis. The Minister of State who is responding this evening responded to that debate as well.

At the outset of this short debate, I must declare an interest. I now have the privilege of serving as the honorary president of the Sutton branch of the Multiple Sclerosis Society.

What has happened in the past year? In my Adjournment debate last year, we learned that the Government were minded to refer beta interferon to the National Institute for Clinical Excellence, and that referral has taken place. The result is that those with the secondary progressive form of MS are left in limbo, waiting to see whether the drug will clear the affordability hurdle. Those with relapsing-remitting MS are waiting to see whether the goalposts will be moved for them too.

In the meantime, postcode prescribing continues. Where people live still matters more than the criteria used to assess whether they are eligible for beta interferon treatment. Just two in every 100 of the United Kingdom multiple sclerosis population receive beta interferon. The European average, by contrast, is 12 in 100. Even given the criteria published by the previous Government in executive letter 95/97, which set out eligibility for access to beta interferon for those with relapsing-remitting MS, people who qualify do not receive the drug.

I want to draw attention not only to the drug, but to the services surrounding MS. A survey undertaken last year found that six out of 10 health authorities could not estimate or had not estimated how many people might benefit from beta interferon. Those that had made an estimate found that fewer than half of those who could benefit were being prescribed beta interferon. It is nothing short of a scandal that prescribing is so low, and left so much to chance.

Beta interferon is not the only matter on which MS sufferers face a postcode lottery. Support services that help them to manage their symptoms are similarly affected. In November 1998, a group of senior neurologists signed a statement that made clear their concern about the availability of MS health services. The signatories included leading specialists in MS who work in neurology centres across the country. They declared:


A year later, Ministers announced that they would introduce national guidelines on the management of MS in England and Wales. Last Wednesday, the Multiple Sclerosis Society organised a mass lobby of Parliament to press for action on services and for an end to postcode prescribing. More than 1,000 people made the trip to Westminster to lobby their Members of Parliament. I am sure that the lobby will have done much to raise awareness among Members, but I hope that Ministers

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have taken note of it too. Those people said--certainly those from my constituency to whom I spoke said--that the issue will not go away.

The catalyst for my debate last year was a constituency case. In February 1999, Josephine Timms wrote to me, saying:


I became quite involved in the case, and it took many letters over a long time, from Josephine and from me, before the local health authority finally realised even that she was resident in the area and therefore its responsibility. At that point, she was finally referred for assessment by neurologists.

I am delighted to tell the House that Josephine started a course of beta interferon on 24 February. However, in a recent letter, she summed up matters as follows:


Buying time is what beta interferon can do. It is not a cure, but for Mrs. Timms and thousands like her it is the light at the end of a very long tunnel.

Josephine's case highlighted not just the availability of the drug, but the lack of planning and support services for people with MS. MS leads to a range of complex symptoms that usually worsen over time. Symptoms include problems with mobility, speech impairment, memory loss, incontinence, pain, spasticity and extreme fatigue. As a result, a variety of health care services are necessary for effective management of MS, including occupational therapy, speech therapy and continence care. Because of the illness's progressive nature, there is a need for patients to be properly monitored so that they can receive appropriate medical and social care for their needs at a given time.

A significant number of patients do not receive specialist advice after they have been diagnosed. After diagnosis, many types of information are relevant to people with MS, such as information about disability discrimination rights, social security entitlement and symptom management. However, for many people with MS, that information is not signposted. A survey of 16,000 people with MS throughout the UK, conducted in 1999, found that more than eight out of 10 respondents were not given written information about MS to take away and read when they were diagnosed.

General practitioners will encounter few MS patients during their professional careers, and they cannot therefore reasonably be expected to gain a high level of understanding of managing MS. The lack of specialist MS care can result in some people with MS developing unnecessary complications.

One form of specialist care is the development of MS nursing. At the Manchester royal infirmary, patients can take advantage of such specialist nursing services. People with MS and their carers are able to receive information and counselling from the time of diagnosis onwards. That nursing service also monitors the condition of vulnerable

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patients in the community and can intervene to prevent patients from developing serious complications, such as urinary tract infections.

An evaluation of the impact of MS nursing in Manchester showed that in-patient admissions for some patients fell because of the service. However, Multiple Sclerosis Society research showed that eight out of 10 MS patients do not have access to such specialist nursing.

Closer to home, I have been told by the chief executive of the Merton, Sutton and Wandsworth health authority that there are no specific budget or policies for the care of people with MS. There is no disease register for people diagnosed with MS in my health authority district. How can sensible planning be undertaken when we have no idea of the prevalence of a disease? However, to be fair, many members of the Sutton branch of the Multiple Sclerosis Society have been enthusiastic in their praise of Atkinson Morley's hospital and its assessment clinics and staff.

Looking beyond my patch, evidence from local health decision makers reinforces my concern about the quality of MS services. In last year's debate, I referred to the 1998 survey carried out by the Association of Quality in Healthcare; its findings were disturbing. In 1999, the survey was repeated. It found major gaps in MS provision across the country.

The total population in the areas of authorities responding to the survey was 27 million. Six out of 10 of the health authorities that responded had no separate contract for MS services. Only two authorities in 100 had issued a consultation document on MS services. A third had held no consultations before setting out its MS policy. That is despite the fact that health authorities have a duty to consult their local population before commissioning services. Only 23 per cent. of authorities specified the range of services that must be provided by clinicians.

In March last year, I asked the Government for their response to the AQH survey. Finally, in October, the Minister of State, Department of Health, the hon. Member for Southampton, Itchen (Mr. Denham) wrote to me. The letter stated:


Why not? Lack of planning and lack of consultation leave health authorities ill equipped to commission services for MS sufferers.

In 1997, the Multiple Sclerosis Society conducted a major symptom management survey of people with MS. The sample of 223 people with MS included people of different ages and degrees of disability. It also looked at people who had suffered from the illness for different periods of time. In particular, the survey found that only 8 per cent. of people were seeing rehabilitation specialists.

A more recent survey of 150 MS patients conducted by the National hospital for neurology and neurosurgery found that only one third of people with severe disabilities were seeing a physiotherapist. When will the new guidelines, promised last November, be published? What status will they have? What resources will they command?

Beta interferon has been shown to reduce the number of MS relapses by an average of one third in a year. Fewer

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relapses mean fewer hospital admissions and a better quality of life. The drug can reduce not only the number of relapses, but their severity.

I have several points to make. First, services that treat symptoms are no substitute for drug therapy that treats the disease. Nursing cannot slow the progression of the disease--beta interferon can do so.

Secondly, Ministers have said that the National Institute for Clinical Excellence will need to assess whether the drug can be better targeted. Can the Minister assure the House that targeting will not lead to a catch-22 situation? The current guidance on beta interferon already targets the drug. Only MS sufferers who have had two relapses during the past two years are considered. The search for better ways to target the drug should not be used as a way of denying it completely.

Thirdly, NICE has the option of recommending a clinical trial to address outstanding research questions, such as effective targeting and the results of combining the drug with other therapies. Clinical trials can make a valuable contribution to our understanding of MS and how best to treat it. However, does the Minister agree that it would be ethically unacceptable for MS patients to have access to beta interferon only by joining a clinical trial?

The rules governing clinical trials usually insist that patients have a real choice to enter a trial. That is particularly the case where the treatment is experimental and could damage the patient's health. However, in the case of beta interferon the drug is licensed for both forms of MS. Many neurologists wish to use the drug because, in their clinical judgment, it will benefit their patients. However, if the only way for someone like my constituent Josephine to get the drug is through a clinical trial, she really has Hobson's choice. For her, the drug buys time for herself and for her young family.

Although I am delighted for Josephine that she is now receiving the drug, many thousands of other people just like Josephine are waiting for the drug; and this Hobson's choice gives just a 50:50 chance of obtaining the drug, because such trials, obviously, are placebo controlled.

Many neurologists regard the recruiting of people for such a trial as unethical. The MS research group of the Association of British Neurologists found that the majority of neurologists would not recruit patients with relapsing-remitting MS on to a one-to-one placebo trial. A United Kingdom trial would be ethical only if the drug was available to be prescribed outside the trial.

I should like to know what the Government's position is. In August 1999, 54 neurologists wrote to the then Secretary of State for Health, the right hon. Member for Holborn and St. Pancras (Mr. Dobson), to protest about the rationing of beta interferon. In his reply on 15 October 1999, the Minister of State, the hon. Member for Itchen said:


Can the Minister confirm that the reference to ethics in that letter means that the Government accept that a placebo-controlled trial of beta interferon in the UK would be unethical?

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In conclusion, MS patients are dealt with in a very disorganised and unsystematic way. In many cases, follow-up of diagnosed patients is poor. As a result, many patients with relapsing-remitting MS are left to deal with their attacks in the absence of medical help, with only an untrained and hard-pushed relative as a carer.

There is an astonishing lack of understanding about MS, its various forms and the implications for patients of having the disease, at all levels in the NHS and beyond it, in social care. What is needed is a well-planned and properly delivered service for MS patients. It is in that context that the best returns are likely to be achieved from beta interferon.

I should like the Minister to answer two questions tonight. First, when will the new guidelines be ready? Secondly, do the Government accept that a placebo- controlled trial of beta interferon in the UK would be unethical?

I want to finish with a further quote from my constituent Josephine Timms.


What happens to the people like Josephine who do not have the energy and persistence to chase and cajole both their MP and their health authority to get the drug and other support? It is those people who do not have that energy who need some answers from the Government.


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