Lupus

Schedule 5 – in the House of Commons at 11:41 pm on 2nd April 2001.

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

12 midnight

Photo of Janet Dean Janet Dean Labour, Burton

I am delighted to have been successful in securing this Adjournment debate. Several weeks ago, I tried without success to secure a debate on brewing, which is important to my constituency. Tonight, I am pleased to address the House on an important issue, about which people's awareness needs to be raised.

We are all familiar with awareness weeks as they seem to occur for one thing or another throughout the year, and we wear our ribbons and badges with pride. Lupus awareness week, which is between 14 and 21 April this year, is special because awareness of lupus needs to be raised. It needs to become more well known than it is.

I want to pay tribute to Lupus UK for its work in trying to raise the profile of systemic lupus erythematosus, which is the name of the condition. I also pay tribute to Cheryl Marcus, who founded the British SLE Group—the forerunner of Lupus UK—in 1978. The current chairman, Ronnie Gourley, and the vice-chairman, Yvonne Norton, work hard to make the general public and the medical profession more aware of the condition. They were also a great help in supporting the formation of the all-party group approximately a year ago.

Systemic lupus erythematosus is difficult to say, and difficult to live with. It is an auto-immune disease. "Systemic" means throughout the system. My hon. Friend the Member for North-West Leicestershire (Mr. Taylor) just asked me what the derivation of "lupus" was. It is the Latin word for "wolf". Some people with the condition have a wolf-like rash across their cheeks. "Erythematosus" simply means a reddening, or an inflammation. People with systemic lupus erythematosus can have inflammations of many parts of the body—a few parts or a lot—with organs such as the heart, the brain and the kidneys being affected. The skin and the joints can also be affected—you name it, and it will probably be involved in some cases, although not in others.

There are some interesting facts about lupus. One in 750 women in the UK have the condition. Worldwide, lupus is more common in some races than in others. It affects about one in 1,000 white women. In black women, the figure is as high as one in 200. Asian races have a higher tendency to lupus as well. It predominantly attacks women of childbearing age, but young children and men can also be affected, and 10 per cent. of lupus patients are male.

Although the disease is little known in this country, it is better known elsewhere. Worldwide, it is more prevalent than leukaemia, muscular dystrophy and multiple sclerosis. It is estimated that some 50,000 people in the UK have lupus, many of whom have not yet been diagnosed. Twenty per cent. of recurrent miscarriages have a direct link with lupus and the associated Hughes syndrome.

When I first heard of lupus, back in 1970, I had to write it down on a piece of paper to remember it. Very few people seemed to have heard of it in those days. Sadly, I heard about the disease because my mother was diagnosed with it. For many years—probably from the time of my birth—she had had such illnesses as arthritis, pleurisy, Raynaud's, syndrome and severe headaches, but nobody had put all that together. It was 21 years later, in 1970, that her illness was diagnosed when it began to affect her heart—I suppose that it had to be diagnosed.

Ironically, in 1978, my husband Alan also developed lupus. We sometimes hear of siblings or a mother and daughter who have it, because there is an hereditary tendency to the disease, but it is unusual to have such an illness on both sides of a family. Alan was seriously ill with cerebral and kidney complications and I pay tribute to Dr. George Cochrane and Dr. Christian Murray-Leslie, who treated him. It is essential that people with such a chronic and severe illness have a good relationship with consultants.

I do not want my speech to be all doom and gloom and it is important to recognise that, at one time, only the severe cases were found. Nowadays, doctors find more cases because, thankfully, they are looking for them. Tonight, I want to ensure that even more people are assessed and, if they have lupus, diagnosed correctly.

For those with severe illness, steroids and immuno-suppressants are often used. Those who have milder lupus can be treated with aspirin or non-steroidal anti-inflammatory drugs. Nowadays, more cases, including mild ones, are being diagnosed and a lot of people are treated, recover from the illness and go on to live a full life, so there is good hope for them. However, we must also acknowledge that lupus can kill. It is a severe illness, which is a reason why diagnoses must take place.

Besides my family involvement, I have attended constituency functions in aid of lupus and have been involved in helping to set up the all-party lupus group, so I have become even more aware of how lonely a condition it is. Some sufferers who have come to coffee mornings in aid of lupus have told me, "I have never met anyone else with it." They perhaps do not know about Lupus UK, nor do they know how to get information, so it is critical that that knowledge is conveyed to the general public.

It is also important that knowledge of lupus is conveyed to general practitioners and consultants throughout the medical profession Lupus is a great mimic of other conditions, which is a reason why it is not always recognised, so I pay tribute to Lupus UK for recently publishing a guide for nurses. Last November, at the reception we held here at the House of Commons, it launched a guide for GPs.

I urge the Government to ensure that there is sufficient training of doctors in many of the rheumatic conditions, because lupus is often treated by rheumatologists. The Government must also ensure that awareness of lupus is raised and that there are enough specialists to concentrate on the disease. Sufficient resources must go towards research to continue to develop better treatments and to increase knowledge of this and other auto-immune diseases.

I pay tribute to Dr. Graham Hughes, whose name has been given to the associated condition of anti-phospholipid syndrome, or Hughes syndrome. Across the river is St. Thomas's, which has a famous lupus clinic and is also a centre of excellence. Doctors throughout the country refer patients to that world-renowned clinic, and I understand that it currently treats some 2,500 people with lupus.

I think that the clinic will be pleased about the Government's bed review. There have been difficulties in the past, but I believe that a couple of beds are now reserved for lupus patients. That means that the clinic can be sure of admitting people from regions throughout the country. We would not want people to think they were going into hospital when, in fact, then were no beds for them. It seems that there has been some improvement, but I hope that the Government and the health authority involved will keep the position under review.

Another issue that I urge the Government to keep under review is charging for prescriptions in relation to chronic diseases such as lupus. I know that if the glands no longer produce cortisone because of steroid treatment, a test can show that and prescription charges can cease; but because lupus affects various parts of the body, many different drugs are often needed at any one time. Dressings may also be needed if there are skin lesions. As a consultant once said to me, people should not have to pay to be ill.

I thank members of all parties for the support that they have given to the formation of the all-party group that we set up last year. There seem to be all-party groups for everything, but we felt that there was a real need to ensure that lupus was more readily known about, and I think that the all-party group will bring that about.

We decided at an early stage to conduct a survey of Members to establish how much they knew about lupus. I think that they may be more aware of the condition than people outside. I am pleased to say that 23 per cent. of Members, including interested peers, replied, which is quite a good response here. It was probably better than normal because we asked only four questions. Perhaps there is a message there for anyone who surveys Members of Parliament: if the questions are kept to a minimum, we are more likely to fill at the forms. The responses were interesting. Of the 153 who replied, 128 had heard of lupus, 51 were aware of constituents with the disease, five had family members affected by it, and 24 had friends who suffered from it.

I hope that the debate will add to the knowledge and awareness of this chronic, debilitating condition, which can devastate families.

Photo of John Denham John Denham Minister of State (Department of Health) 12:13 am, 2nd April 2001

I congratulate my hon. Friend the Member for Burton (Mrs. Dean) on obtaining the debate and selecting this subject. It gives me an opportunity to say something about the Government's position in regard to treatment of lupus.

I am aware of the valuable work that my hon. Friend does in the all-party group that was formed in November 2000. I now know—which I did not before tonight—of her personal family experiences, of which she spoke movingly.

I, too, want to put on record a recognition of the contribution made by the voluntary sector in supporting people with lupus. The work of Lupus UK and its regional network is important. I hope that this year's lupus awareness week will build on the success of last year's event and succeed in its aim of raising public awareness of this distressing condition.

I was surprised to hear the results of the survey—one of the few surveys not sunk by a message from the Whips Office saying that we do not normally respond to surveys. I would not have adjudged awareness to be so high. I must admit that, before I was in my present post, my personal knowledge and constituency experience of lupus would have been nil. The work of the all-party group is important and supports that of the outside groups. I also want to mention the valuable work being carried out by the lupus research unit at St. Thomas's hospital.

Lupus can occur at any age, and in either sex, although it is nine times more frequent among adult females than among adult males. The symptoms of the disease, though, are the same in men and women. Among children, lupus occurs three times more commonly in females than in males. Nine out of 10 patients with lupus are female. It is usually triggered between the ages of 15 and 50. The best estimate is that there are about 50,000 people with lupus in the UK, as my hon. Friend said.

Lupus is a chronic debilitating disorder of the immune system which is incurable and painful. Symptoms can range through the whole medical textbook, but certain symptoms predominate, such as joint pains and swelling, fever and skin rashes.

Lupus is one of the many diseases whose cause is not known. There is probably a genetic predisposition, although episodes can be triggered by environmental agents—for example, infections. Despite years of research, no virus or infectious cause can be identified; nor is there evidence of an environmental cause. Whatever the trigger, the basic problem is an alteration in the immune system. The normal immune system makes antibodies directed against the patient's own body, and this causes tissue damage.

Diagnosis of the disease is difficult because, as my hon. Friend said, many lupus symptoms mimic other illnesses, such as rheumatoid arthritis. There is no single laboratory test that can determine whether a person has lupus. Normally, diagnosis is made by a careful review of a person's entire medical history, together with an analysis of results obtained from laboratory tests and some specialised tests related to immune status. As my hon. Friend rightly said, that does not mean that nothing can be done to help patients with lupus. In the majority of patients, it can be controlled. Treatment aims to suppress the overactive immune system and diminish inflammation.

Treatment may initially be aggressive, perhaps involving the use of steroids, but often milder drugs, such as antimalarials, can be used later. With time, the aim is to treat the disease and use drugs that produce the fewest side effects. Patients may experience a fluctuating course of lupus, but most remain quite well and live at home rather than going into hospital.

I have already mentioned that lupus has no cure at present, that its cause is not fully understood and that diagnosis is often very difficult. That is why it is important to improve our understanding of how to treat and manage it by research. I am pleased to say that the Government, through our support for the Medical Research Council and other research streams, are helping in the drive to understand the causes.

In England, the main Government agency for research into the causes of and treatments for disease is the Medical Research Council, which receives its funding via the Department of Trade and Industry. We keep our priorities for research under review. In the NHS, priorities are identified through widespread consultation with those using, delivering and managing services, taking into account the burden of disease, potential benefits and Government objectives, as well as the responsibilities and work of other funders.

It has long been a principle that Governments do not prescribe to research councils how they should distribute resources. That is best decided by research and research users. The Medical Research Council takes all those factors into account.

The current edition of the national research register—issue 1, 2001—shows that there are 73 on-going projects, with another 95 recently completed, considering various aspects of lupus. The NHS helps all the projects by paying the hospital support costs of the units involved.

My hon. Friend mentioned the lupus research unit at St. Thomas's hospital. It is open to lupus patients from all corners of the United Kingdom, and runs special clinics each weekday, with dedicated staff who are trained in all aspects of lupus and related diseases. In addition to medical clinics, the unit has nurse-led clinics and make-up clinics. It provides patient advice services, including weekly lupus pregnancy counselling clinics, information booklets, a CD-ROM, and a hotline telephone service for patients and doctors. The unit now has the largest number of lupus patients on register in the world.

The unit is fully committed to treating this condition. Led by Dr. Graham Hughes, it undertakes research, supported by the St. Thomas's lupus trust. This research is world renowned and has already made major contributions to the understanding and treatment of this devastating illness. Last year, at the annual scientific meeting of the American college of rheumatology, the lupus unit was awarded first prize for a collaborative study with a unit in Milan. The research unit is clearly doing vital work in increasing our understanding of this complex illness. My hon. Friend the Minister for Public Health attended the launch of the Hughes syndrome foundation in February of this year.

My hon. Friend the Member for Burton mentioned a couple of specific issues. She spoke about the training of doctors and the provision of consultants. My understanding is that training and awareness of lupus should be part of the core training of doctors which is reviewed regularly with the royal medical colleges and the medical schools and universities. There is no evidence of a shortage of consultants in this area. If she has concerns that she wishes to write to me about, I shall be happy to look into the matter further, but that is my understanding of the position.

Entitlement to help with prescription charges is based on the principle that those who can afford to contribute should do so while those who are likely to have difficulty in paying should be protected. For example, children under 16 and people aged 60 or over are entitled to free NHS prescriptions. As my hon. Friend recognised, people suffering from certain medical conditions are also exempt from prescription charges.

NHS charges and all other aspects of Government spending were reviewed in 1998 as part of the Government's comprehensive spending review. Following that review, the Government made the commitment that all current prescription charge exemptions would be protected for the rest of the Parliament and that existing charges would rise by no more than the rate of inflation over the following three years.

The list of medical conditions conferring prescription charge exemption was introduced in 1968 after being agreed with the medical profession. The list has been reviewed on a number of occasions, but no clear-cut case for extending it has since emerged or attracted consensus.

When the medical exemptions were introduced, only 42 per cent. of all NHS prescriptions were dispensed free of charge. Now the figure is more than 85 per cent. As a result, many people with medical conditions not on the exempt list already get free prescriptions on other grounds.

We do sympathise with people who require regular or extensive medication, such as those with lupus, but we have no plans to extend the list of medical conditions that confer exemption from prescription charges. People who have to pay prescription charges can seek help under the NHS low-income scheme or through the purchase of a prescription prepayment certificate that offers considerable savings to those who need regular medication.

One of the aspects of lupus is the pain involved. Pain is a major problem and a common consequence of ill health; indeed, it is a major cause of ill health. It is important that good quality pain management be provided to patients to improve their health care and quality of life. We are committed to providing equity of access to health care and to reducing variations in the availability of services. Patients who suffer pain should have access to services that provide management programmes of proven effectiveness. In reviewing local provision, account should be taken of the needs of adults and children and should include patients with acute pain resulting from sudden illness or accident, as well as post-operative and chronic pain, including lupus.

The clinical standards advisory group report has shown that many NHS trusts have developed excellent services, but we recognise that, in some places, more needs to be done to drive up standards. We expect the NHS to take full account of that report when reviewing local provision to meet the needs of both adults and children.

Lupus can, as I said, be managed by drug regimes and also by careful monitoring and a flexible treatment programme. Patients can learn to manage their condition through information, by pursuing daily routines and by resting regularly, thus reducing stress and pain. We know from research that self-management schemes for people with chronic long-term medical conditions can have beneficial effects, including improved health status and fewer hospital admissions. The "Saving Lives—Our Healthier Nation" White Paper signalled our intention, reaffirmed in the NHS plan, to introduce a programme to help such people to manage their own health better, with specialised support from health care professionals and other agencies.

A specialist taskforce, chaired by the chief medical officer, has been examining in detail how an expert patients programme might be designed and embedded within mainstream NHS activity. The taskforce has examined a wide range of issues, including the role of patients as experts in managing their chronic disease, the relationship between self-management programmes and the support required from the NHS, quality assurance and accreditation, and issues of best practice. Now that the expert patients group has examined many diseases, the challenge will be to apply the lessons learned in the management of lupus. A first draft of an expert patients report has been produced, and my right hon. Friend the Secretary of State for Health has recently announced his intention that the final report will be published in the summer of 2001.

I understand that a drug called Aslera has recently been developed in the United States as a potential treatment for lupus. It is the first new drug to be developed for use in lupus treatment for about 40 years. However, it is at an early stage of development, with further trial evidence being required on both long-term clinical and cost effectiveness. I understand also that it may be submitted for European licensing in the next two years. It is envisaged that, once licensed, it would be recommended as treatment for severe cases of lupus and prescribed alongside existing drug therapy.

My right hon. friend the Secretary of State recently announced that we shall develop a national service framework for long-term conditions. We intend that that framework will be used to produce specific standards for treating long-term neurological conditions. It will also provide generic standards for people with long-term chronic conditions such as lupus. I hope that my hon. Friend the Member for Burton will agree that that is a positive step forward.

I hope that my hon. Friend will also agree that the Government are sympathetic to the needs of patients with lupus. We have supported research into the causes of the disease through the Medical Research Council, and we hope that the standards produced by the national service framework and the work on the development of an expert patient programme will help to improve services for people with lupus. Finally, as I said, I hope that lupus awareness week will prove to be a success.

Question put and agreed to.

Adjourned accordingly at twenty-eight minutes past Twelve midnight.