I am delighted to have secured this debate on behalf of the all-party group on lupus. The group was formed just over four years ago and has almost 100 members from both Houses of Parliament, many of whom were encouraged to join by constituents suffering from lupus. The debate is timely, in that it enables us to recognise the achievement of the international lupus community in celebrating world lupus day on
World lupus day focused on the need for increased research into the causes of, and a cure for, lupus, improved health care services, diagnosis and treatment of the disease, and better epidemiological data on lupus globally. It highlighted the fact that researchers believe that at least 5 million people worldwide have lupus, with more than 100,000 cases developing every year.
Lupus affects people from all countries, but it disproportionately affects people of certain races and ethnicities, and women are nine times more likely than men to suffer from it. Increasingly, there is worldwide collaboration on studies and clinical trials of potential new therapies for the condition, and efforts to identify a cause and cure for lupus are being co-ordinated internationally.
World lupus day was under the direction of an international steering committee of 11 people, who represented 21 countries on several continents. Lupus UK's director, Brian Hanner, was one of the main forces behind the initiative. Lupus UK is Britain's national charity dedicated to the support of lupus patients and celebrated its 25th year in 2003. I was extremely proud to be asked to be a national patron of the charity last year.
I should like to say a little more about the disease. When I was fortunate enough to secure an Adjournment debate on lupus in April 2001, I explained the name systemic lupus erythematosus. "Systemic" means throughout the system. "Lupus" is Latin for wolf, and refers to the wolf-like rash across the cheeks of many lupus sufferers. "Erythematosus" means reddening or inflammation. Such reddening can affect most parts of the body. There is another form of lupus called discoid or cutaneous lupus, which is limited to the skin.
Systemic lupus erythematosus is an auto-immune disease, in which the body attacks itself rather than the bacteria or viruses that the immune system is designed to attack. The resulting inflammation can affect many areas of the body and can cause many different symptoms. Some people get only a few; others may have most of them. Nearly all patients with lupus suffer arthritis. About half have diseases affecting their lungs and/or heart, and skin rashes affect about two thirds of patients. Almost half of patients are photosensitive, a third have kidney problems, and about a quarter have central nervous system involvement.
Other symptoms include Raynaud's syndrome, in which the patient's fingers turn white, red or blue in the cold, and hair loss, mouth and nasal ulcers, fatigue and weakness. The body's temperature control can go wrong, causing both shivers and sweats. Inflammation of the kidneys can cause protein in the urine, kidney impairment and, in some people, renal failure, resulting in the need for dialysis or kidney transplant. When the central nervous system is affected, symptoms can range from headaches or migraines to seizures. Patients can suffer transitory visual problems, grand or petit mal seizures, and involuntary tics or muscle twitches. Patients can also suffer from depression and cognitive dysfunction, with effects such as short-term memory problems. Lupus and the associated anti-phospholipid antibody syndrome, or Hughes syndrome, can also cause miscarriages.
With such myriad symptoms, one might think that lupus would be easy to diagnose. Yet, in many cases, it takes several years for a diagnosis to be made. Patients may present to their GP one or two of the symptoms at any one time, but most will never have all the symptoms, so GPs do not necessarily immediately think of the possibility of such a little-known disease. That is why we must continue to raise the condition's profile.
Last weekend, I attended the Lupus UK national conference in Bristol. One speaker—a consultant in maxillofacial radiology—told delegates that all dental undergraduates are taught about the oral manifestations of lupus. I was greatly cheered by that, and I would be grateful if the Minister of State, Department of Health, my hon. Friend Ms Winterton, told us whether the manifestations of lupus also form part of a GP's training. It is vital that primary care practitioners faced with a patient with several of the symptoms should consider whether those symptoms are linked and there is a possibility of the patient having lupus.
To endeavour to get the message to primary care trusts, and hence to GPs, I, as chairperson of the all-party group on lupus, recently circulated to all Members of the House a booklet, entitled, "The Big 3", written by Dr. Graham Hughes, the eminent consultant rheumatologist at the Louise Coote lupus unit at St. Thomas's hospital. I am pleased and appreciative that the document was passed to primary care trusts by many MPs.
It is right that we attempt in any way we can to raise awareness of lupus in the medical profession and the wider community. I am therefore delighted that the information on lupus that appears on NHS Direct Online has been updated this week. I commend the information that it contains. Not only does it list the various symptoms and the possible causes, which include sunlight exposure, stress, viral infection, hormonal factors and genetic tendency, but it explains how diagnosis is made and outlines the various treatments available for the condition.
There is no cure for lupus. Treatment depends on the severity of the disease in a particular individual and can range from non-steroidal anti-inflammatory drugs used to treat arthritis, to anti-malarial medications used in the treatment of skin rashes, tiredness and muscle and joint pain, through to much more aggressive treatments using steroids and immunosuppressant drugs, such as cyclophosphamide and azathioprine. Although most of the drugs used have not changed during the past 20 to 30 years, the methods of administration have improved, thereby reducing the serious side effects, such as thinning of the bones caused by high doses of steroids.
Survival rates for lupus patients have greatly improved over the past 50 years. As with many medical conditions, it is sometimes difficult to balance a description of the many manifestations of the condition without scaring people into believing that their situation is dire. Many people have mild lupus and live well into old age. There are those who have it severely, but it settles down and, for a long time, they may be in remission after the initial aggressive treatment. Some women sufferers find that their lupus subsides with the menopause. Others have such severe symptoms that treatment fails. There remains a considerable high mortality rate from the disease in its early stages, and young people, sometime in their teens and 20s, can lose their fight against the disease.
Other people who might die prematurely are those who have had the disease for many years, where their internal organs, including their heart and lungs, have become damaged, either from the disease itself or from the necessary toxic drug treatments that they have received over the years. Often, such people will not have lupus stated on their death certificate, so it is impossible to assess the full extent of the mortality rate of lupus.
The good news is that many lupus patients who might once have died from kidney failure now survive because of dialysis and transplants. It is vital that more research is carried out into the causes of, and treatment for, lupus. I commend charitable organisations, such as Lupus UK and the Arthritis Research Campaign, for the way in which they fund research into lupus. ARC funds projects throughout the UK, including in London, Manchester and Sheffield. ARC's remit is to fund other rheumatic diseases as well as lupus, but Lupus UK was set up solely to support lupus patients, their families and their carers, to increase awareness of the disease and its impact, as well as to fund research and to educate general public and health professionals about lupus.
My hon. Friend has achieved a great success in initiating this debate. I invite her to pay tribute to Yvonne Norton, chairman of our west midlands lupus group and vice-chairman of the national group. She has made a majestic contribution, although a lupus sufferer herself. I record the thanks of our parliamentary group and thousands of lupus sufferers throughout the country for her dedication and commitment. She is a wonderful person, and we are very grateful to her for all her efforts.
I do indeed pay tribute to Yvonne Norton. Without her the all-party group would not exist and Lupus UK would certainly be the poorer. She has done wonderful work in the west midlands region and nationally. I also pay tribute to the chairman of Lupus UK, Ronnie Gourley for his hard work, and we should remember the founder of Lupus UK, Cheryl Marcus, who was at the conference at the weekend. Without her interventions and forethought in the early days, the charity would not have been established. Our thanks go to all of them.
There are currently around 7,500 members of Lupus UK, with 30 regional groups, which are governed by voluntary committees. I pay tribute to all at Lupus UK and all the individual members, some of whom I had the pleasure of meeting at the recent national conference. The national support group is invaluable. Lupus UK members not only lobby their MPs to join the all-party group on lupus, to attend the meetings of the group and to sign early-day motions—early-day motion 1069 entitled "World Lupus Day" has more than 200 signatures attached to it—but they provide support and encouragement to each other.
Lupus can be an incredibly lonely disease. If sufferers know no one else who has the disease they can feel very isolated. Because it is not as well known as other conditions, such as multiple sclerosis, other people will find their symptoms difficult to understand. Sufferers and their families may find the symptoms difficult to understand. GPs may also not understand them until a diagnosis has been made. Reading Lupus UK's News and Views or meeting other sufferers helps many patients and their families to understand the condition better and to realise that they are not on their own.
Because lupus is a chronic disease there is a need for close monitoring, sometimes by a patient's own GP, sometimes by consultants in specialist units. Often those will be rheumatology units or specialist lupus units such as the one at St. Thomas's hospital. There are concerns that patients are not able to receive appointments at such centres of excellence as frequently as might be ideal. I would be grateful to the Minister for any reassurance that she can give about access to specialist treatment facilities for lupus patients.
Another issue raised through the all-party group on lupus concerns the employment of specialist lupus nurses at various centres of excellence throughout the country. Currently Lupus UK funds several specialist lupus nurses who provide valuable ongoing support for patients with this unpredictable and frightening condition. The idea is that local primary care trusts should ultimately pick up the costs of these specialist nurses, but in some cases that can prove difficult. I should be extremely grateful if my hon. Friend the Minister provided me with some hope that that will be rectified.
I am pleased that so many members of the all-party group on lupus are here today to support this Adjournment debate. I know that members of Lupus UK greatly value the involvement of Members of Parliament in their fight for greater recognition of lupus. When the all-party group was established, a survey of all Members of Parliament was carried out to establish their knowledge of lupus. I reported the results in my previous Adjournment debate in 2001. Of the 153 MPs who replied to the survey—that response was pretty good in itself—51 were aware of constituents with the disease, five had close family members affected by it and 24 had friends who suffered from it. I hope that, by now, parliamentarians' knowledge of lupus will have increased even further through the work of that group and because of contact from constituents.
I am well aware of the effect of lupus on individuals and their families, because both my late mother, Mary, and my late husband, Alan, suffered from the disease. For all who are affected by lupus, I hope that the Minister can provide reassurance that the Government will do all that they can to ensure that the medical profession is well informed about the disease, so that diagnoses are made earlier, sufficient funding is made available for research into the disease and patients can access specialist treatment when and where it is needed.
When I retired as a doctor, I did not think that I would end up in this place, and when I arrived in this place, I did not think that I would be talking about lupus, which was, if people can understand the phrase, one of my favourite illnesses when I was a doctor. A doctor looks at it in the opposite way from a patient. For a doctor, a favourite illness is one that he thinks he knows something about, he thinks he knows how to diagnose and he thinks he knows how to treat. My problem today is that, because I have given quite a lot of lectures on lupus to general practitioners, students and junior doctors in the past, I must be careful not to give a straight medical lecture, which would not be appropriate. I shall therefore say a little about the name of the disease, diagnosis, treatment, prognosis and research.
Order. This might be an appropriate moment for me to remind hon. Members that the first of the three winding-up speeches will start 30 minutes before the debate concludes. I must therefore try to allow all other hon. Members to contribute by 10.30 am. A further three are in line to speak.
Thank you, Mr. Deputy Speaker. I have no intention of going on for hours; I am sure that I can say what I need to in 10 minutes or so.
I accept the definition of the name "lupus" that Mrs. Dean gave. However, I visited my local safari park not long ago and looked at the wolves, and they do not actually have a rash on their faces, so I much prefer returning to the archaic mediaeval Latin, which describes lupus as an eating ulcer or cancer. That is exactly what lupus does. It clogs blood vessels, which means that bits of tissue inside and outside die. The person affected looks as if a wolf has been gnawing at them. The Bible talks about "ravening wolves", and Shakespeare talks about men returning from battle and eating like wolves, but Mrs. Gaskell got it best. She uses the phrase
"deaden the gnawing wolf within", which is a marvellous quote to describe lupus, because lupus sufferers have a gnawing wolf within.
Diagnosis in medicine is similar to bird watching. If we are interested in birds, we know exactly what a bird looks like and, from reading about it, its habits. Those of us who know anything about birds know that a willow warbler and a chiffchaff are identical until they open their beaks. Equally, we can look at books, but we cannot recognise various of the wading birds until we really observe them.
I was a general physician with a wide range of interests and a special interest in rheumatology. This may sound hard, but it is not meant to: one almost collects illnesses, and diagnosis becomes the most fascinating part of the job. Seeing someone whose symptoms have gone undiagnosed for years—as with lupus—and being the person who puts their finger on the problem gives one great satisfaction and makes the patient a friend for life, because one then takes them on.
It is splendid that the hon. Member for Burton secured the debate. As she said, diagnosis of lupus is difficult because it mimics other illnesses. One of the first patients whom I saw was a lady who had been diagnosed as having regular clots in her lungs, but the X-ray appearances of repeated pulmonary emboli are similar to those of repeated appearances of vasculitis in the lungs, when the lungs shrink.
I know that my lectures to local GPs had some effect because, as long ago as 1979, I received a letter from a GP about a lady who had had a series of attacks of swollen knuckles associated with a rash of both cheeks and her upper lip. He wondered whether she had systemic lupus erythematosus, and of course, she did. There are many causes of recurrent chest pain, early strokes, and epilepsy, so the only way to diagnose lupus is to be aware of it as a possibility, and do the necessary referral and tests. Oddly, some of the simple tests of acute inflammation—this is an inflammatory disease—that a GP would expect to act as screening tests do not. Lupus is one of the few inflammatory diseases that can completely fox a doctor, as normal tests would pick up some of the inflammatory diseases.
The hon. Member for Burton referred to prognosis. In 1943, all but two of a series of 30 patients were dead in three to eight months. By 1970, survival rates were much better due to treatments, and because the way in which those treatments are used is better than 30 years ago, survival rates are improving. Still, however, patients can be given a gloomy prognosis by somebody who does not know much about lupus. A lady came to me in floods of tears because her husband had been talking to her GP and had been given a fearful prognosis, which he could not keep from her. That needed correction.
On treatment, as has been said, there have been no new drugs in about 30 years, which is very disappointing. I wrote a review article on lupus as long ago as 1970, and in the introductory paragraph, I wrote:
"Since 1948 the advances in our understanding of lupus have been dramatic and exciting. One feels that the final answer must be close at hand."
Sadly, that was 34 years ago.
When I arrived in Parliament, I was staggered to find that there were so many all-party groups related to health issues; my latest list shows that there are 66. Of those, a large number refer to important health issues, but about half refer to single illnesses, where there are pressure groups of patients who feel that those illnesses are not getting a fair crack of the whip so far as staffing and resources are concerned. Lupus is one of those, and it is very deserving because it is controllable in most cases. If it is not picked up and controlled, it costs the NHS vast amounts in support and treatment of late complications. I hope that we shall hear from the Minister ideas about raising awareness, which should not cost too much money. Most local hospitals have a rheumatologist, who will diagnose the disease if someone is referred to them, and there are also specialist centres. I hope that Government funds will increasingly be pushed into the research into lupus, and I would like to hear some encouragement from the Minister on that.
First, I want to congratulate my hon. Friend Mrs. Dean on securing the debate and pay tribute to her hard work over the years, not only in raising awareness of lupus, but in campaigning for better services. In comparison, I know little about it. I belong to an east midlands group, I am a member of the all-party group and I have constituents who have lupus. For those reasons, I intend to confine my remarks to one or two specific points about it.
Lupus is an auto-immune condition; in fact, it is a spectrum of disorders. Its symptoms can range across any medical book, in any combination. They can be mild or extremely severe and can move from one to the other in the blink of an eye. That makes diagnosis extremely challenging. Yesterday, I rang the lupus expert centre in Nottingham, and I asked a clinician whether there was any evidence that patients were rattling around less at general practitioner level before being referred to that centre. He said that there was. I asked him what he put that down to and he said that it was partly because of the work of Lupus UK in raising awareness, and because there is an excellent centre in Nottingham. Of course, communities of GPs liaise and link with a local or sub-regional centre of excellence, and naturally improve their education in that way.
Unfortunately, there are still gaps in the service and an awful lot of stories about people struggling a great deal to get a diagnosis. Nevertheless, diagnostic tests are much more available to GPs, including auto-antibody tests, and there is evidence that GPs are using them more. Therefore, there are encouraging signs, but there is a lot more to be done.
A patient who receives a diagnosis of lupus may follow various pathways. People might be lucky enough to live in an area where there is a sub-regional centre of excellence, such as Nottingham, Newcastle, Birmingham, or Leeds; St. Thomas's and the Middlesex have also been mentioned. What has happened is that a group of experts have come together and made the service excellent. They have a specific interest. Their backgrounds are in haematology, immunology, rheumatology and renal services. For some reason, a catalyst has brought them together and they have knit the service together well.
However, those sub-regional centres do not exist everywhere. There are some good local lupus facilities that can offer treatment for the aggressive presentation of lupus, but they do not necessarily have the same kinds of facilities as the sub-regional centres. Many patients find themselves in local hospitals where the training and expertise in management simply is not at the same level. I wondered whether the Minister would say whether there is an additional role for strategic health authorities, to ensure that those excellent services are much more coherently available across the country. I would be grateful if she examined that. Primary care trusts also have a role in terms of funding and commissioning services.
At the heart of the lupus issue, because of the nature of the condition, is patient self-management. The patients know their condition best; they know when symptoms change. However, at the heart of that is the need for investment in resources for good education for patients, so that they can see the signs, access the relevant services and make a distinction between signs that might indicate a stepping-up—a more aggressive presentation—of the disease, and signs that herald something much more common that we all get from time to time.
At Nottingham, the PCTs have gathered together and funded two specialist lupus nurses. They are invaluable: patients can access them at any time, and if those patients have an aggressive episode, they are rapidly signposted to the appropriate services. Specialist nurses for many conditions are coming through now, and I would like to see more coming through for lupus. Patient self-management is phenomenally important.
I want to move on to treatment other than self-management. One large aspect of tackling the condition is the drugs regime. As has already been said, there are far more effective drugs, and cocktails of drugs, available now than ever before. As Dr. Taylor said, many years ago a person given a lupus diagnosis thought that they had—and in many cases, they did have—a death sentence. That is no longer the case.
I am delighted that the National Institute for Clinical Excellence is evaluating prasterone for systemic lupus erythematosus. That is very good news. However, there is a problem with developing drugs for a condition such as lupus, because the disease is still relatively uncommon, and drug companies do not have the same motivation to develop a drug that will be used only by a relatively small number of people.
However, there is scope for international co-operation. I was delighted to hear from my hon. Friend the Member for Burton that that is happening much more actively. Of course, the global demand is much larger than demand in any specific country. Co-operation, ought to be stimulated and enhanced.
In that context, NICE has recently given the green light to a drug called rituximab, which has proved very effective in treating non-Hodgkin's lymphoma, and I gather that there is some kind of read-across to the treatment of some types of lupus. However, there would need to be clinical trials prior to any evaluation by NICE of that drug in relation to lupus. Again, we fall into the trap: who would sponsor those clinical trials to establish whether that drug would read across and be effective with lupus patients?
Finally, I ask the Minister where we are with the national service framework for long-term conditions. I know that the focus is on neurological conditions, but obviously there is also an intention to set high standards for generic long-term conditions. It would be good to know how that initiative is progressing, because it will offer a template to ensure that there are more joined-up services and more equity in the system.
When my hon. Friend described developments in public awareness, particularly those that have occurred in this place, she characteristically understated her own contribution. Her arrival here on
Although it is one of the least- known conditions, lupus affects some 5 million people across the globe. There are more than 50,000 sufferers in this country, which means that each Member of Parliament has 70 to 100 lupus sufferers in his or her constituency. Lupus is more common than better-known illnesses, such as leukaemia and multiple sclerosis. However, despite its prevalence, relatively little was published on it until recent years. I was pleased to hear that Dr. Taylor was active in this area as long ago as 1970.
Little has been published about the effect of lupus on sufferers, or what can be done to relieve it, but at last lay people like us are steadily learning more about its effects and treatment. That owes much to the admirable and unstinting efforts of Lupus UK, the national registered charity to which my hon. Friend referred earlier, which supports those with systemic and discoid lupus and assists those who are approaching the long process of diagnosis.
Treatment depends a great deal on the professionalism, skills and energy of those who work in units such as the one just a few hundred yards from here at St. Thomas's hospital, which is led by Dr. Graham Hughes. We look to volunteers, who raise so much money for the vital, pioneering research that is taking place, and we ought to put on record our admiration for the work that they do. Politicians, such as the Minister of State, Department of Health, my hon. Friend Ms Winterton, and the all-party group, of which I am happy to be a member, need to raise the public profile of lupus and raise awareness of what is being done and what lies ahead to be tackled.
Lupus is a worldwide disease. There is international co-operation in researching its causes and tackling people's concerns. World lupus day was two weeks ago. In New York city, there was the international congress on systemic lupus erythematosus and allied diseases, where more than 100 patient and advocacy bodies were able to share information and develop or strengthen collaborative initiatives to find a cause of and a cure for lupus. October 2004 has been designated awareness month.
What are the priorities for the lupus campaigners? The resources for medical research have yet to catch up with those for other conditions of comparable magnitude and severity. Much more work is needed to develop safer, more effective therapies for the disease. We have heard that no wholly new therapies have been introduced for more than three decades. That says a great deal about the Cinderella status of lupus. Existing treatments can be toxic and often, perversely, cause life-threatening health problems that may be worse than the primary disease. Much more remains to be done to resolve such chronic difficulties.
Several international studies have shown that lupus has a considerable impact on the health care system and on society, owing to its complexity and treatment. Depending on which organs are affected and the frequency and severity of disease activity, individuals with lupus may have to take multiple medications, be treated by physicians from several medical specialities and undergo numerous evaluations and procedures. Worst of all, they may be hospitalised several times a year.
Substantial progress has been made on morbidity and mortality in the past half-century. We have heard some of the figures. In the 1950s, the five-year survival rate was around 50 per cent. Nowadays, the 15-year survival rate is some 85 per cent. However, lupus still has a serious effect on the quality of life of those who suffer from it. Fewer people die from it, but the figures are still significant. For example, the Arthritis Research Campaign website records that of 361 SLE patients treated at University College's Middlesex hospital lupus clinic from 1978, 50, ranging in age from 16 to 87-years old, had died by 2002. The mean age at death was 50, which is perhaps 30 years less than normal life expectancy. ARC also deserves to be congratulated for the work that it is doing. As it points out, while the prognosis is better, close monitoring is the order of the day.
We know that lupus is caused by the inter-reaction of environmental, genetic, hormonal and other factors, but the enormous complexity of the disease makes identifying its precise cause incredibly difficult. Nevertheless, newer emerging technologies give researchers cause for optimism. The structure and function of specific antibodies are being evaluated while the study of the inter-reactions between cell populations in the immune system is assisting our understanding of how lupus develops.
The good news is that some laboratory research translates fairly speedily into new therapies in the clinic. One example is the British use of B-cell depletion to treat severe cases of the disease. However, there is much to do to extend understanding of the critical involvement of cells and molecules, such as the lymphocytes and cytokines, which are the chemical messengers that enable cells to communicate.
There is even more to do to deal with the widespread lack of recognition of lupus by health professionals, the general public and Governments. Many physicians worldwide are unaware of its symptoms and health effects, causing people with the disease to suffer for several years before being correctly diagnosed and treated. There is an unmet need, in this country and worldwide, to educate and support individuals and families affected by lupus, and to increase awareness of the symptoms and health consequences.
We need continually to raise awareness of lupus, to collect better epidemiological data on its extent and impact, to research its complex causes and a possible cure, and to develop therapies to improve the quality of life for the thousands of sufferers in this country.
Lupus has been a Cinderella area of health care. Although I do not expect the Minister to produce the glass slipper that will transform its status, I hope that she recognises the scale of the problem and will react swiftly and appropriately to tackle the problems highlighted by the all-party group on lupus, led magnificently for seven years by my hon. Friend the Member for Burton.
I congratulate my hon. Friend Mrs. Dean on securing the debate. She is a patron of Lupus UK and has done a magnificent job in leading the all-party group and making MPs more aware of the disease. I feel intimidated having heard Dr. Taylor and my hon. Friends the Members for Erewash (Liz Blackman) and for North-West Leicestershire (David Taylor), because I am not knowledgeable about the disease and do not have their expertise. As politicians, we learn a great deal about people's concerns, troubles, successes and achievements, but it is impossible to become experts on every issue, although we do of course become aware of many matters. I do not know whether we are better weather vanes for public concerns than focus groups—that is an issue of empirical research.
As MPs, we are privileged to be taken into people's lives, and that is how I found out about lupus. My hon. Friend Mr. Turner mentioned Yvonne Norton. I first became aware of lupus because she lives in Coseley in my constituency. As my hon. Friend said, she is a wonderful woman who has done a great deal with the all-party group. In 1981, she founded the west midlands lupus group, the first regional lupus group, and she is still the chair of that group as well as being the vice-chair and trustee of Lupus UK. She is also the UK representative to the European Lupus Erythematosus Federation. Her husband, who has not been mentioned, is the treasurer of the west midlands lupus group and the ELEF.
I want to talk briefly about what the west midlands lupus group has done to raise the issue and to provide support. It has made a financial contribution of £400,000 to help to fund lupus research and patient care, in addition to funding the day-to-day running of the group. It also produces a newsletter and organises open meetings. As my hon. Friend the Member for Erewash said, the group contributes to patient self-help. It helps and supports patients. It helps sufferers come to terms with having lupus; for example, it advises on the items and adaptations that may be needed to live as near a normal life as possible with the disease. It holds open meetings, which medical speakers and others attend, and it also holds social and fund-raising events.
Since 1997, the west midlands lupus group, as part of Lupus UK, has sponsored a Lupus UK specialist nurse based at the Queen Elizabeth and City hospitals in Birmingham. On
Providing self-help and funding is the first aspect of the work. The booklet produced by Lupus UK has been mentioned, but Yvonne Norton had earlier produced, with Lupus UK, "Lupus—a GP Guide to Diagnosis", which was sent free of charge to every GP practice in the country and distributed more widely. It is the only book that covers all aspects of lupus aimed specifically at GPs. As I understand it, it is now used extensively for both reference and diagnostic purposes.
I also want to refer to what happened at the Dudley guest hospital in my constituency. In October 2003, I had the privilege of being at the opening of the first UK lupus drop-in clinic with the mayor of Dudley, Rosemary Tompkinson. That idea has taken off and will, I hope, be followed in other parts of the country. It was an initiative of Yvonne Norton and the west midlands lupus group, and it is a joint project with the Dudley Group of Hospitals NHS trust. It is a monthly drop-in clinic. A nurse practitioner and representatives of the group are always in attendance. Talks are held there.
The first three-month evaluation of the success of the clinic is about to be published by Treharne from the Dudley Group of Hospitals NHS trust and various colleagues from the University of Birmingham. The study demonstrates that the dedicated care that the clinic can provide is extremely useful in helping not only with the immediate symptoms but with associated disorders. The research work demonstrates that depression was the most common co-morbidity, followed by osteoarthritis and back pain. Co-morbidities are common and need to be dealt with. By providing that dedicated care through the clinic, they can be addressed more efficiently.
I hope that I have given a flavour of the work that is being done. Following the success of the Dudley lupus drop-in clinic, plans have been formulated to set up drop-in clinics in other areas covered by the west midlands lupus group. Other regional lupus groups are seeking advice on establishing similar drop-in clinics.
I began my remarks with the general, and shall finish with the general. Lupus, as my hon. Friends have explained, is under-recognised as a disease. Early recognition and diagnosis are essential, but that may be difficult because the symptoms often mimic common illnesses. It seems to me, having seen the work that Yvonne Norton does and the work of the all-party group, that there is a challenge to professionals. The hon. Member for Wyre Forest has taken a long-standing interest in the matter, and professionals are now much more open to and welcoming of patient involvement in medical diseases, as consumer involvement might be welcomed in other areas.
However, in this area, as my hon. Friend the Member for Erewash said, self-management by patients is crucial. My hon. Friend the Member for North-West Leicestershire mentioned the work of volunteers. The work of professionals can benefit from patient involvement, not only in providing support groups or financial support for research, but in raising the consciousness of a disease among both professionals and practitioners, and among people such as ourselves.
I, too, congratulate Mrs. Dean on securing the debate. I know that in her role as chair of the all-party group she has worked tirelessly to raise awareness of this distressing condition.
I also welcome world lupus day. As Liz Blackman said, it may be instrumental in encouraging international co-operation and perhaps will result in the development of drug treatments. I pay tribute to Lupus UK for its work in supporting people with the condition and in funding research.
As has been said, lupus is a distressing condition, which may vary from very mild effects to severely disabling symptoms; in some cases it can be fatal. We have heard that prognosis has improved considerably, but there is still a long way to go. Lupus is far more common—six times more common—in people of black and ethnic minority origin than in white people. My constituency is diverse and lupus is much more common there than in many other parts of the UK. Consequently, general practitioners in my area are well attuned to picking up the condition and diagnosing it, but that is not the case in many other areas.
Our local hospital, Central Middlesex hospital, has around 400 lupus patients on its books, which is high for a hospital of its size. It has one specialist in the condition and one specialist nurse. However, I am told that it desperately needs another specialist and another specialist nurse to meet the need. In common with most specialists in the condition, the current specialist is a general rheumatologist, so he has many calls on his time.
Lupus needs intensive monitoring. It requires complex drug regimes that also require intensive monitoring because they have a very narrow therapeutic index. We heard from Dr. Taylor that if the condition is not managed well, the problems can get worse, and the drain on the NHS can be enormous. It is therefore a false economy not to manage the condition well. As the hon. Member for Erewash said, specialist nurses play a vital role, as they do in many other complex and long-term conditions, because they give patients the opportunity to learn more about their condition and to manage it themselves.
Although the situation in Brent is better than in many other areas, there are some shocking cases in which people have fallen through the net. Earlier this year, a gentleman came into my constituency office in exasperation. He had been referred to the lupus unit at St. Thomas's hospital, Westminster, and was originally given an appointment on
The problem of the lack of specialists is difficult to quantify because general rheumatologists tend to treat the condition. When I asked a parliamentary question about the number of specialists available, I was told that the information was not held centrally. I also asked about the number of patients with lupus and the only information I was given came from Lupus UK, which was out of date in respect of about 10,000 patients.
There is a problem in assessing need, which is typical of a disorder that unfortunately attracts little attention. David Taylor said that it was a Cinderella disorder. It is a specialised condition in the NHS. Liberal Democrats have asked whether the present voluntary consortium arrangements are adequate in dealing with specialist commissioning. The Government's review of specialist services has not addressed that problem adequately.
Another matter that puts great pressure on lupus patients is prescription charges. Ongoing problems that need many complex drugs, perhaps over a lifetime, can put a great strain on patients who may already be under pressure financially if they are unable to work or if their income decreases because they can only work part time.
Lupus sufferers often have to take a cocktail of drugs, which can produce adverse effects. Can the hon. Lady suggest how the privately owned pharmaceutical industry can be encouraged to invest more in research? That might allow the number and range of drugs that are prescribed to be narrowed, with a consequent reduction in the adverse effects?
As the hon. Member for Erewash said, international co-operation is the key and I hope that world lupus day will encourage specialists to work together. Groups of pharmaceutical companies will need to co-operate, perhaps with incentives from the Government to do so.
Prescription charges can place great burdens on patients. Liberal Democrats are committed to a full review of prescription charges to find a fairer system, especially with a view to considering the effect on the chronically ill, who have a particular problem in that respect.
I hope that the national service framework for long-term conditions will come on line very soon. I know from my work with Macmillan Cancer Relief before I was elected to Parliament that many patient groups are desperate to have the national service framework and have great hopes that it will lead to better management of chronic conditions.
I have been brief to allow other hon. Members time to speak and the Minister to respond. I urge the Government to obtain better data on the number of patients with the condition and the number of specialists who treat it, so that specialist numbers can be better matched to patient need, and to ensure that GPs have adequate training in treating the condition. I repeat my hope that there will soon be an NSF for lupus.
I, too, congratulate Mrs. Dean, not just on securing the debate but on her work with the all-party group and on the awareness of the condition that that has encouraged. I count myself a member of the all-party group on lupus and it is a tribute to the hon. Lady that the debate is being held today. Three years ago, she secured a debate at a late hour at the end of the day, when there were fewer hon. Members present to witness it. I am glad that today many more hon. Members are participating in the debate, which is guaranteed to give the Hansard writers nightmares, as many diseases with technical spellings have been mentioned.
I echo the hon. Lady's thanks to the leading lights in Lupus UK; the determination and hard work of a few individuals has put the condition much higher up the agenda. The name of Yvonne Norton has been quoted by just about everybody, and I will be no exception. I want to praise the work of Lupus UK. It works not just to raise awareness of this little-known disease but to provide welfare facilities for members as well as books, fact sheets, videos and, as hon. Members have already mentioned, the bible to the disease, "Lupus—A GP Guide to Diagnosis", which I know that GPs in my constituency use often.
I also want to mention a personal interest: how good it is to see the progress of the Louise Coote clinic under Dr. Graham Hughes at St. Thomas's. Louise was a friend of mine, who died almost 10 years ago. She spent much of her adult life in and out of hospitals with most of the symptoms that have been mentioned today. She bore her illness with enormous courage until it eventually got the better of her. What has been satisfying is that her husband Tim and many friends have raised and continue to raise so much money to support the centre, which has the biggest register of lupus sufferers in the world. It is a centre of excellence that many people throughout the country can use, and it does some fantastic work.
We have had some interesting contributions. In opening the debate, the hon. Member for Burton gave many of the facts and figures, which I will not repeat. She mentioned the recent world lupus day, which is something of a slimmed-down version of Lupus UK's lupus awareness month two years ago. That was perhaps somewhat greedy compared with the weeks and days that most other groups have. However, the campaign has gone worldwide, which is essential. We need to use the expertise and experience of drugs companies and of those races and ethnic groups throughout the world who have a greater propensity to have the disease, to try to accelerate a cure.
The hon. Lady mentioned many of the knock-on effects—not only the physical symptoms, but some of the mental health symptoms, including depression and memory problems. Those points are often neglected, because we tend to look just at the physical manifestations. We need to ensure that special mental health assistance is available for lupus sufferers as much as for people who suffer from less technical and complicated mental health problems.
The hon. Gentleman might like to know that there are both physical and emotional reasons why people get depression when they develop lupus. Someone can obviously become depressed because they have a chronic disease, but there are also direct physical reasons for depression and other neurological manifestations. That is because lupus can inflame the brain just as it can any other part of the body. Both living with the disease and undergoing the physical changes cause depression and other mental health symptoms.
The hon. Lady is right, but the point is that, more than many other conditions, lupus is a technical disease that involves a range of professionals and different assessments, as David Taylor mentioned.
As ever, we heard an interesting contribution from Dr. Taylor, who is a general physician with a wide range of interests, as he described himself. In his contribution, those interests extended to twitching and to classical and literary references. I side with him on taking up the cudgels for the much-maligned wolf, and the Latin to which he referred will have had much more to do with the naming of the disease than that one part of the animal kingdom.
Both hon. Gentlemen mentioned the improving survival rates, but it is depressing that the hon. Member for Wyre Forest was able to pluck out an article that he wrote 34 years ago, and yet not much progress has been made since then in understanding and getting to the heart of the disease. Liz Blackman described how Lupus UK has raised awareness among doctors, and I underline her point about how important patient self-management is. The hon. Member for North-West Leicestershire commented on the side effects of some of the toxic cocktails of drugs, which is another worrying aspect.
A multidisciplinary approach is required, involving many different professionals and assessments. There must be ways of simplifying the system, which currently often pushes lupus patients from pillar to post, seeing one consultant after another, filling out more and more forms and going through more and more tests. We need a more streamlined patient-centred approach to the disease than we have at present.
Ross Cranston referred to the pioneering work undertaken by the west midlands lupus group, especially the drop-in clinics. They bring great succour to sufferers from lupus and other diseases who would not otherwise know where to go for help. If their GP is not completely in tune with the disease, sufferers can feel lonely, as the hon. Member for Burton said when she opened the debate.
As we have heard, systemic lupus erythematosus can inflame different parts of the body and affect organs—a few parts or many—such as the heart, the brain and the kidneys. Skin and joints can also be affected. It is difficult to pin down. People suffer fatigue, flu-like illness and skin rashes. Some lupus patients have a clotting tendency, which can present itself as a thrombosis in a vein or artery. I agreed with the hon. Member for Burton when she said that we have underestimated the extent of problem. Lupus is rarely recorded on a death certificate. Kidney failure or similar symptoms are attributed as the cause of death, not lupus. Many more people are dying from lupus than are officially recorded as such, which is another reason why we must give more attention to the disease. Will the Minister explain what steps have been taken to secure more accurate reporting of deaths that are caused by lupus, rather than it being one of the symptoms that have brought about death?
We have heard about the numbers of people affected by lupus, such as one in 750 women in the United Kingdom, in whom it is triggered especially between the ages of 15 and 50. A recent study undertaken in Birmingham showed that, in a population of 1.2 million, 242 adults were known to have lupus and 33 new cases of lupus had been diagnosed in one year. The prevalence was 28 per 100,000 people, which is about one person in 3,500. The incidence of new cases per year was 3.8 per 100,000 people, which is about one person in 26,300 people; 90 per cent. of lupus sufferers are female, and people of West Indian origin are particularly likely to develop the disease even when they are born and live in north America or the United Kingdom. Surprisingly, people of West African origin, from which group the West Indian population is descended, are at a low risk of developing lupus, but studies have suggested that up to one in 250 women in Jamaica develop lupus.
In Birmingham, one in 500 women of Afro-Caribbean background have lupus compared with about one in 1,000 women from India and Pakistan and about one in 2,500 white European Caucasians. What special measures are the Government taking to investigate the higher instance of lupus among black and ethnic groups? What extra support can be given to such groups, who are often more reluctant to come forward to medical practitioners anyway? What special measures can be taken in future?
Worldwide, there are 5 million lupus suffers. It is more prevalent than leukaemia, muscular dystrophy or multiple sclerosis. I repeat that people underestimate the extent of the disease. Will the Minister say what further work has been undertaken on the causes of lupus? It has been suggested that an hereditary tendency might exist. The hon. Member for Burton has said that in the past, but no single gene puts people at risk of developing lupus, unlike haemophilia and cystic fibrosis. Environmental factors include exposure to ultraviolet light, various infections, possibly chemicals in the environment, factors related to stress and female hormonal activity, for example the oestrogen-containing contraceptive pill or pregnancy. Can the Minister say what research is being undertaken?
We have heard about the lack of available drugs, although mild lupus can be treated with aspirin or non-steroidal anti-inflammatory drugs. Some years ago, mention was made of clinical trials taking place in the United States on a drug called aslera, which was the first drug to have been developed in 40 years. Will the Minister give us a progress report on that drug and say whether it has reached an advanced stage?
The training of doctors is important. I have mentioned the guide produced by Lupus UK. We have heard that doctors should be trained more about lupus. We heard from the hon. Member for Burton that, as standard practice, dentists now hear more about diagnosing lupus. Can the Minister give a progress report on how many doctors, as standard practice, are now made aware of lupus? What is the progress on specialist lupus nurses, who can make such a big difference?
Finally, I want to echo the point about prescriptions. As the hon. Member for North-West Leicestershire said, many complicated cocktails of drugs are involved, because lupus affects various parts of the body. Dressings may also be needed if there are skin lesions. That can put an enormous financial burden on sufferers of complex lupus symptoms. Has the Minister any words of comfort about special circumstances pertaining to lupus sufferers?
Lupus is a specialist illness, but an important one. More than many others, it involves a range of different disciplines and professionals. It is often forgotten in the bigger picture: we hear much about nurses and doctors, hospitals and waiting list numbers, and not enough about long-term chronic diseases such as lupus. I hope that the Minister will give words of encouragement that the Government understand the extent of the problem and will give more practical support for the many sufferers of lupus. Without the work of Lupus UK and individuals about whom we have heard, as well as the hon. Member for Burton who secured the debate, many would still be suffering, largely in silence, and without the greater understanding of the disease than we had 30 years ago—although we still have a long way to go.
May I start by adding my congratulations to my hon. Friend Mrs. Dean on securing the debate? I know that she secured a similar debate in 2001 and has worked extremely hard to raise awareness of lupus, not least with her work as the chair of the all-party lupus group, and I am pleased to see so many hon. Members from both sides of the House supporting her. This has been a thoughtful debate, and all hon. Members have paid tribute to the hard work and dedication shown by the voluntary sector in helping people with lupus, especially Lupus UK. We are all aware of the contributions that individuals can make and are making.
My hon. Friend Mr. Turner and my hon. and learned Friend Ross Cranston paid tribute to the work of Yvonne Norton. Tim Loughton spoke about seeing at first hand through a friend the work to raise funds and awareness done at St. Thomas's hospital.
As my hon. Friend the Member for Burton said,
My hon. Friend the Member for Burton and my hon. and learned Friend the Member for Dudley, North raised the issue of GP awareness in particular. Many hon. Members have pointed to the fact that information has been circulated to GPs about diagnosis. My hon. Friend Liz Blackman spoke about how Lupus UK has also raised awareness and how it is being raised through specialist centres; my hon. and learned Friend the Member for Dudley, North also spoke about the role of specialist nurses. My hon. Friend the Member for Erewash mentioned the role of strategic health authorities in ensuring that there are such centres everywhere. My hon. Friend the Member for Burton talked about whether there would still be specialist nurses if funding from Lupus UK were to stop.
While, obviously, I hope that the funding of such nurses will continue, it is important to recognise that in shifting the balance of power we do not dictate from the centre exactly what should happen in each area. I think that Sarah Teather highlighted that when she discussed the prevalence of the disease in her constituency. We can assist in raising awareness. We have tried to do that in the work that we have done with Lupus UK on NHS direct. We can indicate support and help to spread best practice. However, it is up to individual local health authorities to decide how they want to utilise those resources.
As many hon. Members have indicated, the number of specialist centres is increasing. I am sure that all hon. Members will be aware that, as a Government, we do not specify the content of the GP training curriculum. That is the job of the Joint Committee on Postgraduate Training for General Practice, which is the independent authority for putting together general practice training in the UK.
The Minister rightly spelt out the limits of the Government's involvement in GP training. Does she hope that the various bodies that are responsible for that will reflect on the Oklahoma research published only days ago, which showed that testing for auto-antibodies can help to predict the onset of rheumatoid arthritis and lupus four years before symptoms occur? Surely, that is a helpful test and GPs should be aware of it?
Yes. As my hon. Friend said, there are increasing developments in that area, which will assist in helping diagnosis. We expect GPs to learn and to get the training and skills needed to deal with all their patients, which, obviously, includes those with lupus.
I also wanted to mention the development of specialist GPs, which, in a sense, the hon. Member for Wyre Forest drew attention to; in his own way, he developed that specialism. As hon. Members will know, we are looking through the new contract to ensure that that specialist GP training is available.
Many hon. Members mentioned the importance of ensuring that patients with conditions such as lupus can manage their illnesses more effectively. I want to refer to three strands of that: the expert patients initiative; the chronic disease management programme; and the national service framework for long-term conditions. Although, as many hon. Members have pointed out, lupus is not one of the headline conditions in those programmes, important lessons can be learned from them about managing chronic diseases.
In the chronic disease management programme, we are examining self-care—something that my hon. Friend the Member for Erewash mentioned. The first steps are to audit existing work being carried out to support patients in managing their conditions and to look at how future work can be devised. Again, the involvement of patients, carers and representatives will be central to that work. As the chronic disease management board considers how to take its work forward, I will make it aware of the work that is done by Lupus UK. The board will focus on two approaches to managing chronic conditions: case management and self-care support.
On the expert patients programme, as hon. Members know, people with chronic illnesses have several common requirements, including dealing with acute attacks. The effective use of medicines and treatment is incredibly important, especially in this area, because, as has been said, patients often have to take a range of drugs. They have to manage pain, fatigue and depression—something that my hon. Friend the Member for Burton has raised. We know that lupus can be managed by drug regimes, by careful monitoring of drugs and by having information available to manage the condition. Through the experts patients programme, we are considering a generic course that helps a person with any long-term illness to become more confident in dealing with their condition day to day. It has been said, in particular by my hon. and learned Friend the Member for Dudley, North, that if that can happen, it will reduce hospital admissions and vastly improve quality of life. By 2007, the expert patients programme will be in place nationwide.
The national service framework for long-term conditions is another aspect of our work to ensure that people manage lupus more effectively. To answer a question asked by several Members, that will be published towards the end of the year or early 2005.
Is it likely that the national service framework will name some conditions? If it does, does the Minister agree that it is important that lupus should also be named? We already have the problem that the condition is little known. If multiple sclerosis were to be named in the NSF because it is a neurological condition, it would be equally important that lupus was mentioned because one of its manifestations is neurological.
The NSF will not cover non-neurological conditions, which is what lupus is considered to be at the moment. However, it will consider how to cover some of the common issues faced by people with long-term chronic conditions and disabilities. It will consider the generic issues of information for service users and carers, and community equipment. It will also help us to look at how we can assist families and carers in developing skills and expertise in understanding and managing conditions. We want that to be linked closely with the expert patients programme and the chronic disease management programme.
The hon. Members for East Worthing and Shoreham and for Brent, East (Sarah Teather) spoke about prescription charges. As is well known, entitlement to help with prescription charges is based on the principle that those who can afford to contribute should do so. However, a number of schemes are in place for people on low incomes, and special certificates are available for people who have to take a range of drugs. I must say to the hon. Member for East Worthing and Shoreham that, given his party's plans to reduce expenditure on the NHS, I do not think that the issue will be one that they consider.
Would the Minister like to withdraw that comment? She knows full well that we have plans to increase expenditure on the NHS. We will consider precisely those long-term chronic conditions that her Government have blatantly neglected in pursuit of artificial targets and because of the distortion of clinical priority.
Not just now, because I want to address the issue of research.
Many hon. Members have paid tribute to the work done by Arthritis Care and others to promote research, and I absolutely support that. The main agency through which the Government support medical and clinical research is the Medical Research Council, an independent body. It is a long-standing and important principle of successive Governments that they do not dictate to research councils the detail of how they should distribute resources between competing researchers and so on. However, it is important to stress that if Lupus UK has specific proposals for research, they should be submitted to the appropriate body. In 2002 the MRC spent some £5.5 million on arthritis and rheumatism research. There is an ability to ensure that research can be carried out.
Hon. Members raised the issue of new drugs and pharmaceutical company research. A new drug has been developed in the United States as a potential treatment for lupus. It is called aslera, and it is the first new drug for the treatment of lupus to be developed in some 40 years, as hon. Members said. We have asked the National Institute for Clinical Excellence to carry out an appraisal of that drug, and we expect it to report on in 2005.
If there are points that I have not addressed, I will be happy to write to hon. Members, but I should like briefly to mention data collection. It is difficult to collect data on individual conditions, because of problems associated with collecting, analysing and constantly updating them. I will bring the point about the classification of deaths to the attention of the Office of Population Censuses and Surveys.
I hope that I have made it clear that the Government take the condition extremely seriously. The work being done to raise awareness will be important not only among the medical profession but to the public, and the general programme that we have set out will ensure that greater attention is given to this distressing condition.