Lupus
The final item of business is a members' business debate on motion S3M-2655, in the name of Kenneth Gibson, on lupus awareness. The debate will be concluded without any question being put.
Motion debated,
That the Parliament notes that October 2008 is Lupus Awareness Month, with members and supporters holding a Lunch4Lupus and other events across the country to raise awareness of this condition; recognises that around 5,000 people in Scotland and over five million people worldwide, of whom around 90% are women, have lupus; further recognises that, while lupus can be mild, it may also be disabling and sometimes fatal, has no known cure and causes many different symptoms, including joint and muscle pain, fatigue, depression and kidney, heart, lung and brain symptoms, as well as recurrent miscarriages; acknowledges that there is an urgent need to increase awareness in Scotland of the debilitating impact of lupus and the difficulty that can arise in gaining a diagnosis, given that it mimics a number of other diseases; supports Lupus UK and other organisations across the world in calling for increases in funding for medical research on lupus and targeted education programmes for health professionals; believes a review of the provision of specialist services in the NHS for those with the condition to be of pressing concern, and regrets the lack of a national clinical centre for excellence in Scotland like that of the St Thomas Lupus Trust in London.
I thank the 30 members from all five political parties who signed the motion, which has enabled me to bring to the chamber an issue that has not had the attention it deserves. Most of all, I thank Lynette Findlay, Geraldine McDevitt, Esme Griffiths, Nurse Lindsay Clark—Scotland's only specialist lupus nurse—and Karen Allan and her colleagues in the Strathclyde lupus group, who are in the public gallery, for providing me with so much background information on the mysterious and complex auto-immune disease of lupus.
"Lupus" is Latin for wolf. It is supposed that the disease was named lupus in the mid-19th century because the commonly presenting facial rash and ulceration resemble a wolf bite. However, the rash is often butterfly shaped, so the disease's name might have as its basis "luoue", the French word for a butterfly-shaped mask that was worn at masked balls.
Lupus can be fatal. Former First Minister Jack McConnell, who unfortunately cannot be here, reminded me that his friend Ali Abbasi died as a result of lupus. Lupus causes the immune system to turn against parts of the body that it is designed to protect. Its most common form is systemic lupus erythematosus—SLE. There is no cure, but lupus can be treated effectively with drugs. Lupus is characterised by periods of illness that are known as flares and by periods of remission. Understanding how to prevent and treat flares helps sufferers to maintain better health.
Many more women than men have lupus. It is difficult to estimate how many people in Scotland have lupus, because its symptoms vary widely and its onset is often hard to diagnose. Estimates range from 1,000 to 5,000. The cause is unknown: genetic, environmental and possibly hormonal factors are likely to combine to cause the disease.
Each person with lupus has slightly different symptoms that can range from mild to severe and which might come and go over time. The symptoms include painful or swollen joints and muscle pain, fever, red rashes—commonly on the face—chest pain, hair loss, pale or purple fingers or toes, sun sensitivity, oedema in legs or around the eyes, mouth ulcers, swollen glands and extreme fatigue. New symptoms may appear years after the initial diagnosis, and different symptoms can occur at different times. In some people, only one part of the body, such as the skin or joints, is affected, while others experience symptoms in many parts of their bodies. Just how seriously an individual is affected varies from person to person. Systemic effects can impact on the kidneys, lungs, central nervous system, blood vessels, blood and heart.
Diagnosing lupus can be difficult. It may take months or even years to piece together the symptoms. Geraldine, a lupus sufferer, told me:
"I was diagnosed with SLE 20 months ago, but had a difficult route to diagnosis. I began with severe headaches, losing concentration and low mood. My GP suggested antidepressants and counselling (neither really helped). A few months later I developed a rash on my face and chest. My GP thought it might be acne and gave me antibiotics. The rash worsened and I developed severe night sweats, loss of appetite and fatigue. My GP then said it was Flu! I became increasingly ill, the roof of my mouth was full of ulcers and my GP thought it was shingles. A blood test showed I was anaemic, leucopoenic, thrombocytopoenic and my ESR was through the roof. I had a chest x ray to rule out TB. Circles appeared on my fingers and soles of my feet, my hair was thinning, I had swelling under my left arm, I slept all day and night and couldn't eat. Viral studies were carried out, I saw all the physicians and had no diagnosis, was reverse barrier nursed and put on IV antibiotics. A dermatologist looked at my rash, took more blood tests and a skin biopsy. Walking was difficult. SLE was eventually diagnosed. My diagnosis journey took eight months."
That is a typical and painful story from someone who did not have a switched-on general practitioner who could pick up on basic indicators from examination or questioning and run blood tests before referring the case to a rheumatologist. Quick diagnosis and treatment can limit or stall the level of impact that the disease can have.
Esme, a constituent of mine, told me:
"I am unable to plan too far ahead as I wake up in the morning in great pain, particularly in my joints, especially my hands (causing me great frustration as I am a keen embroiderer and handicrafts enthusiast—the pain and lack of feeling limits me sometimes for days from doing any of this type of work), and feet (I sometimes have difficulty in walking). Often my toes are numb but at the same time they cause me great pain. One point I want to make is that I am regularly told how well I look—the disease does not show itself like a broken arm! I am on constant medication, and will be for the rest of my life, there is a constant battle to balance my medication so that my liver and kidneys are able to function. I am pleased that this almost unheard of disease is being raised in the Scottish Parliament and only hope that NHS Scotland can channel more funding and research in to trying to find a cure."
A correct diagnosis of lupus requires knowledge and awareness on the part of the doctor. Treatment is tailored to individual needs and may change over time, so it is important that patient and doctor work closely together and take an active role in managing the disease to prevent flares, treat them when they occur, minimise organ damage and reduce complications. Development and maintenance of a good family and community support system are also important.
The prognosis is far brighter than it was even 20 years ago. It is possible to have lupus and remain active and involved with life, family and work. As research efforts unfold, there is hope for new treatments, improvements in quality of life and, ultimately, a way to prevent or cure the disease. Experience in patient assessment and management of their care is imperative, and because joint pain is so prevalent in SLE, interested rheumatologists are usually the medical staff who are involved in co-ordinating care and seeking assistance from relevant specialists as needs require.
Recognising the need for services to go beyond the medical model, Lupus UK provided funding for a specialist nurse in 2006. This post, which is held by Lindsay Clark, provides support for patients in north Glasgow and Lanarkshire at Glasgow royal infirmary and Hairmyres hospital, providing clinical service support, undertaking assessment of patients' needs, implementing person-centred care plans and evaluating their impact. After feedback from lupus patients, carers and clinicians, the service has been developed to include a much-needed telephone advice line offering specialist advice. The sustainability of the post is cause for concern because current funding ends in March 2009, with recurring funding still to be secured. I believe that the Scottish Government should help to make the post sustainable, provide a similar post in the east of Scotland and look to develop a national centre of excellence in Scotland, like that of the St Thomas Lupus Trust in London.
Lupus has been greatly neglected in Scotland over many years, no doubt because of lack of understanding and because many lupus sufferers are perhaps reluctant to come forward and talk about their condition. We have an excellent opportunity here today to ensure that awareness of the disease is enhanced tremendously, and to move forward to provide better care and treatments for people with this awful disease.
I thank Kenny Gibson for taking the opportunity to highlight lupus in his members' business debate. Given that the condition affects 5,000 people in Scotland, and given that this is lupus awareness month, the debate is indeed timely.
It is difficult to imagine a condition in which the immune system attacks the body's healthy cells and tissues instead of protecting them from illness and infection, but that is what lupus does. As Kenny Gibson outlined, the various difficulties surrounding the condition include the fact that the disease has many manifestations and that each person's profile, or list of symptoms, may be different. Lupus can also mimic other diseases, such as multiple sclerosis and rheumatoid arthritis, which makes it even more difficult for lupus to be diagnosed by GPs, who see so few cases of the condition that they may not be alert to its being a possibility. Such problems are exacerbated by the lack of a single test that can say definitely whether a person has lupus. Against that background, as Kenny Gibson said, diagnosis of lupus is complex and requires comprehensive examination and consideration of the symptoms.
For those reasons, I welcome the establishment of the Scottish lupus exchange, which I understand first met at the Scottish Society for Rheumatology in 2007. The exchange allows rheumatologists to share expertise that they have gained through their experience of seeing many patients frequently. The exchange may not be a centre of excellence, but it is a centre in which expertise is being gained. Such a medical network has the potential to advance knowledge and practice in the clinical and scientific fields of lupus and other connective-tissue diseases, and can help to raise awareness and understanding of the condition. Its key objective of becoming multidisciplinary is a pragmatic way forward, which will be achieved by including specialists with, for example, renal, neurological and dermatological expertise as well as interested doctors in training and specialist nurses. The Scottish lupus exchange is not a managed clinical network—although it might sound like it—but the fact that people are working together is to be welcomed. Undoubtedly, the exchange will help to develop the high-quality standards of care that are needed and the much-needed research into the condition.
Sharing information and best practice is the model for improving patient care across Scotland for lupus as for other conditions. I was pleased to see that the room at the back of the chamber has some excellent leaflets, which are very attractive and set things out clearly. That is extremely helpful.
In reading about all that research and integrated work, I was struck by the efforts of Sheena Edwards, whose story is covered in the national magazine of Lupus UK. As a Hibs fan, Sheena managed to convince her favourite club to feature an item on lupus in its match programme some time ago. Given that football programmes are guaranteed to be read and—depending on the result—kept by many people, perhaps the Minister for Public Health might want to consider taking that sort of opportunity to promote some of the Parliament's positive public health messages to some of the more hard-to-reach sections of the population.
I apologise for not staying for the remainder of the debate, as I hope to get an earlier train to Inverness. I thank the Presiding Officer for calling me early.
I add my congratulations to Kenneth Gibson on obtaining this members' business debate.
Lupus is yet another of the long-term conditions that we have so often discussed in Parliament and it shares many of the attributes of other such conditions. It is imperative that individuals are diagnosed early and treated early and that they are given advice on how to manage their condition. Lupus tends to be a long-term condition, but it is not necessarily lifelong, given that it can sometimes go into considerable remission such that people can come off their medical treatment.
However, the condition is very serious. As a very young general practitioner, one of the earliest emergencies that I was presented with was haematemesis—vomiting of blood—as a complication in someone with lupus. Regrettably, the lady died. It was one of the most horrendous experiences of my medical career. That was a long time ago. It is much more important for patients now to recognise that the possibilities for the treatment, management and control of lupus have improved substantially.
Lupus is slightly unusual in that it predominantly affects women; approximately 90 per cent of sufferers are women. It is also more common among Afro-Caribbean, Asian and Chinese people. Again, that is a group for which communication is not as good as it is in the general population. We already know that some ethnic groups have problems with access to medical care, so how the Government and other parties tackle health inequalities has to be reflected in our management of the condition, as is the case with so many others.
Treatment is sometimes relatively straightforward, but it can involve significant and serious drugs. Steroids are sometimes vital and even life-saving when acute flare-ups of the condition occur. Of course, if it is continued for any length of time, steroid treatment can have serious complications, so such treatment is reduced or eliminated whenever possible. Treatment can also involve the use of immunosuppressive drugs, such as azathioprine, methotrexate and mycophenolate—or mofetil—which are quite powerful drugs that have to be administered very carefully. I make that point because it is important that individuals are managed by specialist services. It is not practical to ask a general practitioner to manage individuals with the condition.
The condition illustrates the need to tier services appropriately. It will be perfectly practicable and possible for the primary care network to manage the overwhelming majority of people with some chronic conditions, but it is vital for conditions such as lupus to have a national managed care network in which individuals can support each other and patients, and where nursing expertise is developed to provide the long-term support to which I have alluded.
I welcome the formation on Government advice of the Scottish lupus exchange. It clearly provides the basic background to developing a properly managed care network. However, as there are about 5,000 patients, I believe that it will be important to train some sub-specialists, such as nurses or general practitioners with a special interest, to ensure that patients are given the effective treatment that they deserve so that they can lead as normal a life as possible, and manage their condition with professional support.
I add my congratulations to Kenneth Gibson on securing this important debate at a significant time.
I am sure that the Presiding Officer will remember that, about an hour ago, Kenneth Gibson described himself to the chamber as a prime example of a member of a corrosive species.
I think that I said aggressive.
I am sorry—an aggressive species. I am quite certain that several people in the chamber would have agreed with him, but his contribution to tonight's debate gives the lie to the claim that he is a member of an aggressive species. He summed up extremely well the features of the condition, its potential treatments and the problems faced by people who suffer from it. As a doctor who, like Dr Richard Simpson, has in the past looked after patients who had the condition, I think that Kenneth Gibson gave an excellent summary of what goes on and the problems that we face.
I give full support to the call for more research because we do not know exactly how to treat the condition and we cannot cure it. As Richard Simpson said, many of the drugs that we use at the moment can have awful side effects and lead to further problems. We need to find a new generation of medication and other forms of treatment to improve the lot of people with lupus.
We must alert people in the community—general practitioners, nurses and other primary care workers—to the disorder, because it presents in many different ways. We must also recognise the psychological consequences of having lupus. People with any chronic disorder often have extremely severe psychological difficulties because they feel unsupported in the community. Although it is wrong to diagnose depression in someone with certain symptoms, it is equally important to remember that, when a diagnosis has been made, people need support. That is where organisations such as Lupus UK can have enormous benefits, as it is helpful for people to meet other people with similar problems and share with them experiences and solutions.
I slightly disagree with the motion's call for a national centre for lupus. It is important, as Mary Scanlon and Richard Simpson said, to think about a network for lupus. One of the problems of having national centres for some conditions is that it is possible to deplete experience on the periphery, as patients are drawn to the centre, which becomes the only place where the condition is treated. In turn, that means that people who are not involved in such centres become deskilled and cannot give help locally. In a country such as Scotland, in which there are vast distances to be travelled, that can be extremely dangerous. I agree that we must have areas in which there is greater knowledge than elsewhere, but, as we live in a time when we can access the benefits of telemedicine and other forms of communication, we should go for the network concept, perhaps with nodes within that network where there is greater experience. If the idea of a national centre means that the treatment of everyone with lupus would be managed from that centre, I would be against that. However, that is probably not what Mr Gibson is calling for.
I am sure that Mr Gibson will have the support of everyone in the chamber for what he is attempting to do.
I thank Kenny Gibson for lodging the motion and enabling us to debate this serious issue. I am glad that the issue is being brought to the attention not only of the chamber but of the wider public.
I must also thank Frances Curran, who was the previous convener of the cross-party group on lupus. She worked hard to establish the group, which was well attended and went from strength to strength. We must give credit where credit is due.
I did not know much about lupus until I became involved in the cross-party group. However, I learned fairly quickly. The members of the group—some of whom are probably in the gallery today—ensured that we knew exactly how badly lupus affects the 5,000 sufferers throughout Scotland. I was shocked to learn that 90 per cent of the sufferers are women, as Richard Simpson said. Lupus can cause recurrent miscarriages, which came as a shock to me when I found out about it. However, clinical evidence suggests that research can be done on that aspect. Although we need specialist services for everyone who suffers from lupus, not just women, given that we have evidence that 90 per cent of sufferers are women and that the condition can cause miscarriages, we should focus the attention of specialists on that area. I ask the minister to take that point on board and ensure that we are able to make an early diagnosis of the condition.
A starting point would be to ensure that professionals are educated about the evidence that is available. Mary Scanlon and I have mentioned that 5,000 people are affected by lupus. The condition has various symptoms, but we know that it is correlated with recurrent miscarriages. I would like us to look at that issue.
Kenny Gibson said that many sufferers do not want to divulge the fact that they suffer from lupus. I want to tell members how I became involved with the issue. My involvement is not professional or personal. A young person, not long married, with a young family, discovered that they were very ill. The person, whom I will not name, was vibrant and had a good career in front of them. It took a number of months for them to discover, after various tests, that they suffered from lupus. That person is now in a wheelchair—not all the time, but now and again. It took many months for them to be diagnosed and to find out exactly what was the matter with them. They are still very cheerful, but they now have to use a wheelchair or sticks. When we see such situations, it makes us wonder how many other people do not know that they have lupus, because the symptoms vary so much.
It is important that we look at research into lupus. We know how many people—more women than men—suffer from it. There is evidence on the condition, and people who do not know that they have it are continuing to suffer. It takes too long for them to be diagnosed. As Richard Simpson said, we should diagnose the condition early, so that people do not have to suffer so much. I ask the minister to take that issue on board and to consider providing specialist services. I agree with Ian McKee that we do not need to provide a single specialist service in Scotland, similar to the one that exists in England, and that we need to share information, to ensure that people are aware of the condition. Awareness and education are important.
There have been a number of attempts during lupus awareness month in previous years to secure a debate on the condition. Kenneth Gibson has succeeded—I congratulate him on securing the first ever debate in the Parliament on lupus.
The motion contains a number of elements and I will try to cover them all. I acknowledge the help that we have received from the Scottish lupus exchange, an informal network of rheumatologists that met for the first time last year. I also record our appreciation of the work of Lupus UK, which is effective at providing information and support for those living with the condition.
Lupus is a rare disorder of the immune system that presents with a range of symptoms that often mimic other illnesses, complicating the process of diagnosis. It comes in a number of forms—tonight I will talk about the systemic kind. As has been mentioned, lupus affects about 5,000 people in Scotland, 90 per cent of whom are women. On that prevalence, each general practice would have, on average, about five patients with lupus. As the motion states, the condition can be not only debilitating but disabling and, sometimes, fatal. Fortunately, in most people lupus can be treated with drugs; most people with the condition can lead active lives.
The Scottish lupus exchange suggests that services for people with lupus have been improving, thanks to the appointment over the last 10 years of more rheumatologists with an interest in the disease. Thanks to funding from Lupus UK, there is now a lupus specialist nurse in the west of Scotland. Among other things, she has developed the first telephone advice line for people with lupus. As Kenny Gibson said, the post is funded only until the end of the financial year, but it has been a highly successful initiative. A major concern of those with lupus is that we should not lose the expertise that the specialist nurse has built up. I hope, therefore, that national health service boards in the west will help to put funding for the post on a sounder basis for the longer term. I would also like NHS boards in other parts of Scotland to take up this approach. I intend to maintain an active and keen interest in the issue.
The motion suggests that there is an urgent need in Scotland to raise awareness of lupus, especially given the difficulty of making a diagnosis. Lupus UK runs local meetings that provide information and assistance for those with the disease. Medical staff and the lupus nurse specialist contribute to those meetings. For GPs in training, the new Royal College of General Practitioners curriculum includes on the checklist of essential knowledge requirements a specific reference to lupus as one less common condition. The Scottish lupus exchange also has a role in supporting general practitioners. At NHS board level, it is keen to raise awareness of the potentially serious complications of the disease.
The motion also calls for increased funding for research. Many fundamental aspects of lupus are still puzzling, such as why women are nine times more likely than men to get it. The chief scientist office would be pleased to consider proposals for research on the disease. Patients in Glasgow are already contributing to such research, and the Scottish lupus exchange would like to find ways to promote larger studies, which could address some of the issues that Sandra White raised. The British isles lupus assessment group has developed a system for collecting clinical data that, with the proper safeguards, could be used as a basis for developing Scotland-based research projects.
Targeted education for health professionals is another issue that the motion raises. I understand that a clinical research fellow has just been identified to consider the best way of providing undergraduate medical students with educational information about lupus. Links between the division of nursing and health care at the University of Glasgow and the lupus specialist nurse have started a process of education for nursing students in Scotland. I am sure that members will consider that to be a positive move.
The motion regrets the absence of a national centre of excellence in Scotland such as the lupus unit at St Thomas' hospital in London. It is, of course, possible for people in Scotland to be referred to that unit if that is considered necessary on clinical grounds. The Scottish lupus exchange is keen to build on expertise at local level to develop what it describes as a virtual centre. That would allow patients access to excellent local services while providing support for staff and patients alike through a national mechanism. As Ian McKee outlined in his speech, such a pattern of services may be better suited to Scottish geography and circumstances than a single centre of excellence. Services should be provided locally wherever possible, but with prompt access to specialist services when necessary. We need to bear it in mind that travel may be difficult for those with the more severe manifestations of the condition. The model of a virtual centre also holds the promise of helping to sustain higher-quality services more locally.
The Scottish lupus exchange considers itself to be a managed clinical network in its infancy—Richard Simpson and Mary Scanlon picked up on that point. I encourage it to develop as a formal MCN, and the Scottish Government health directorates stand ready to help with advice on that process.
Through our general work on long-term conditions, we aim to improve services for people who live with any such condition. The particular emphasis on self-management is relevant to lupus: patients can be given help to understand why they suffer flare-ups of the illness, how to treat them when they occur and how to maintain better health—for example, by avoiding unnecessary exposure to the sun.
I am in full agreement with the spirit of the motion. We must provide the best possible services for those who live with the debilitating condition. I hope that I have been able to persuade the members present that I am keen to work with them and the organisations that I have mentioned to make progress.
Meeting closed at 17:38.