I am delighted at the end of this interesting and important parliamentary day to have the opportunity to raise the important issue of dystonia. For those who do not know, it is a neurological movement disorder, or a series of disorders, that possibly derives from a chemical imbalance in the brain or, more specifically, in that part of the brain, the basal ganglia, that regulates muscle activity.
The imbalance can be hereditary, but in other cases it apparently comes about as the result of an accident or illness. Muscles can begin to develop, as it were, a life of their own, causing uncontrollable twitching, tremors and other abnormal movements. The condition can affect the whole body or—it is just as debilitating and painful—it can be focal dystonia and attack one particular part of the sufferer's body such as the tongue, the mouth, the head, the neck, the arms, the hands or the muscles around the eyes.
Dystonia in children can be particularly cruel. The disease is generally progressive and it can leave a child with an able mind locked in a seriously disabled and contorted body and, sometimes, unable even to speak or communicate properly.
In a recent letter to my hon. Friend the Member for North-East Derbyshire (Mr. Barnes), Professor Gosling points out that, even though there are 40,000 diagnosed cases of dystonia in this country and many more that are undiagnosed, dystonia does not have quite the high profile associated with its sister diseases, such as Parkinson's disease, multiple sclerosis and motor neurone disease.
There is a national society for dystonia sufferers and their carers and the disease's low profile is something that my local group, the West Yorkshire Dystonia Society, has decided, to its great credit, to do something about. It feels that the disease's lack of profile explains why so few resources in the national health service are given over to the diagnosis and treatment of sufferers and why there is so little research into the causes of this crippling condition and into a cure.
In fact, the position appears to be worse than that. Many sufferers of dystonia who have been in touch with me in recent weeks remained undiagnosed for an average of two to three years. In one memorable case, a patient was undiagnosed for 30 years, which must be some kind of record. I regret to say that, in the period before diagnosis has been confirmed, many patients report very poor treatment at the hands of their GPs and other medical professionals.
I shall illustrate my point by referring to my constituent, Margaret Burke. She and her husband and carer, John, are two of the stalwarts of my local dystonia society. Margaret was originally told by her GP to stop wasting his time. She was a stupid woman, he said, and appeared to need something to worry about now that her children had left home. She persisted, but it took more than two years for her to be referred to a specialist, but then only to a psychiatrist, because the GP was still of the opinion that whatever she suffered was, at worst, a psychological problem. He thought that she was imagining the feeling that her head was about to twist off her shoulders.
Several years later, Margaret has undergone six operations under the only British surgeon who carries out a procedure to alleviate the effects of what she really was, and is, suffering from—namely, spasmodic torticollis, which is an uncontrollable twisting of the neck muscles. Is it any wonder that, when people who are so afflicted—there are probably more than 100,000 of them in this country—meet with such a response, which adds to the distress caused by their painful condition, they are brought to the depths of despair? One sufferer who spoke to me said that she had had a nervous breakdown, which she attributed to the frustration caused not only by seeing her body deteriorate but by being treated in that fashion.
Another constituent, Elizabeth Price, like Mrs. Burke, agreed willingly that I should relay her details to the House so as to allow those for whom the condition is a new phenomenon fully to understand its dimensions. Miss Price was a midwife for 14 years, a job which she loved and from which she got enormous satisfaction, but she had to retire at 31. She is now wheelchair-bound and describes herself as severely disabled. She can no longer drive; indeed, she is housebound and has to be cared for by her mother, who in turn had to give up her own job so that she could perform that function 24 hours a day, seven days a week.
Miss Price considers herself fortunate that, after many years, she now receives treatment for her severe pain from Dr. Higgins at Kirkwood, our first-rate local hospice. Initially, however, she also had difficulty in having her complaints of feeling unwell taken seriously. She contends that many of the medics whom she saw were ignorant of her condition, under-resourced, with little time and they were unavailable to her during her emergencies or at times of relapse. Appointments were often six months apart with little monitoring of her progress or of her reaction at one stage to new and revolutionary drugs. She has no electric wheelchair, which would aid her independence, and the local social services department has still to agree to the adaptations to her mother's home which would free her from imprisonment on the ground floor.
To state the obvious, people with such distressing, painful conditions deserve better, so without detaining the House too much longer I ask the Minister for the following assurances: first, that all GPs will receive improved training in diagnosing dystonia; secondly, that the improved training will then be extended to other relevant medical staff up to and including neurologists; and thirdly, that her Department will publish the amount given annually by the Government to fund research into movement disorders in sufficient detail for it to be clear how much of that cash will help dystonia sufferers.
Fourthly, will the Minister encourage the Secretary of State to meet Dystonia Society officials, as I asked him to do some time ago, to hear at first hand of their concerns as the poor relatives of the movement disorders family, as they consider themselves? Finally, will the Minister consider being the keynote speaker at the inaugural meeting of the all-party dystonia group, which I intend to establish?
I congratulate my hon. Friend the Member for Batley and Spen (Mr. Wood) on selecting this subject for debate. As he said, this has in many ways been a memorable parliamentary day.
Good health is what people treasure most. Dystonia may not be a disease that many will be familiar with, but for some it will have had a major impact on their everyday lives. The Dystonia Society estimates that some 38,000 people in the UK suffer from the condition. We need to ensure that the national health service is sensitive to the needs of anyone who suffers from dystonia.
I shall outline the origins and treatment of dystonia, which are relevant to the specific questions that my hon. Friend asked. I shall then say more about the research into its causes which we are undertaking, and how our modernisation of the NHS will help all patients, including those with this debilitating disease.
My hon. Friend has graphically outlined the experience of two of his constituents. I shall not cover the same ground other than to say that the effects on the body can be diverse. Although dystonia is not fatal, it is a chronic disorder and prognosis is difficult to predict. Furthermore, it may begin at any time during childhood, adolescence or adulthood.
It is important to note that, to date, no test to confirm diagnosis of dystonia has been developed. Instead, the diagnosis of dystonia rests solely on the information from the affected individual and the physical and neurological examination. Therefore, correctly to diagnose dystonia, doctors must be able to recognise the physical signs and be familiar with the symptoms. I am aware that it is often misdiagnosed—in the case of one of my hon. Friend's constituents, seriously so—and mistaken for Parkinson's disease.
The cause of dystonia is not currently known, although the DYT1 gene is thought to be implicated in some cases and cerebral accidents such as birth injuries and stroke in others. In addition, we know that neuroleptic drugs can produce dystonic symptoms. I understand my hon. Friend's concerns and I appreciate how difficult it is for doctors dealing with cases in which there is no simple test to confirm diagnosis. Let us not forget the patients, who quite rightly want an explanation for the illness they are facing and how it can best be treated. That is why we must strive to take the work forward. I shall talk about current research to improve our knowledge and therefore provide more effective treatment.
Although there is not yet a cure for dystonia, there are a number of treatments that reduce the symptoms and help to restore patients to many daily living activities. Treatment for dystonia is designed to lessen the symptoms of spasms, pain and disturbed posture and function. Most therapies are symptomatic, attempting to cover up or release the dystonic spasms. No single strategy will be appropriate for every case, so even after diagnosis, which as we know is sometimes extremely difficult, any treatment plan needs to be carefully structured to meet the needs of the individual patient. The goal of any treatment is to achieve the greatest benefits while incurring the fewest risks and side-effects.
The approach to treatment of dystonia is usually three-tiered, involving oral medications, botulinum toxin injections in small, safe doses and, in some cases, surgery.
Those therapies may be used alone or in combination and interventions may be made to maintain mobility. The introduction in the late 1980s of botulinum toxin—a biological product—has made a considerable difference to the lives of people with dystonia. The toxin, which is injected into the muscles, acts as a nerve-blocker and prevents the release of acetylcholine, which is a neurotransmitter that activates muscle spasms. The effects of the treatment generally last for a few months, but then it needs to be repeated.
Surgery is generally considered when patients are no longer receptive to other treatments, which can lose their effect over time. The surgical techniques used are generally intended to interrupt the neural pathways responsible for the abnormal movements of dystonia patients. Recently, in a new development mentioned by my hon. Friend, surgeons have started to use deep brain stimulation—also used in Parkinson's disease—with some success.
Although we are treating dystonia with some success, there are limitations owing to our lack of a full scientific understanding of the disease. I firmly believe that long-term research holds the key to finding a cure for dystonia, so I shall now address that area, in response to the specific questions my hon. Friend raised.
The role of genetic factors in dystonia has been the focus of research over the last decade in a number of countries. In England, the main Government agency for research into the causes of, and treatments for, disease is the Medical Research Council. The MRC receives its funding via the Department of Trade and Industry. In 1999–2000, the MRC provided more than £3 million for research into movement disorders, which include dystonia. My hon. Friend asked for a breakdown of the figures specific to dystonia, but the lack of clarity about the specific origins of the disease and the fact that it has a lot in common with other diseases means that the research package covers the whole group of diseases. The research will improve our understanding of those conditions and aid the development of treatments for dystonia and related movement disorders such as Parkinson's disease, Huntington's disease and multiple sclerosis.
In the five years from 1994 to 1999, the MRC invested more than £8 million into research related to dystonia. I think my hon. Friend will agree that that is a substantial investment and shows that we are serious about trying to establish the causes of, and possible treatments for, dystonia.
I draw my hon. Friend's attention to the report from the chief medical officer's expert group entitled "Stem Cell Research: Medical Progress with Responsibility". It recognises that the early research on stem cells is exciting and provides a real hope of new treatments becoming available in a few years for people with chronic diseases. Many people, including patients and their families who shoulder the burden of these diseases, support the report, recognising the considerable impact that it could have on their health and their lives in the long run.
I hope that, over time, this research will provide a breakthrough in the understanding and treatment of genetic diseases. We must be realistic about this process, however, and make sure that people understand that scientists are not offering us immediate solutions. This research approach is no magic wand. What works on a mouse in a laboratory may not have the same effect on a human being. It may well be many years before the work bears fruit.
Given these limitations—we are making significant investment into research, but we may not have an immediate answer both to finding the causes and to treatment—it is important to consider how we disseminate information that is available to professionals and to patients. It is an exciting time overall within the NHS. We are looking forward not only to new money, but to modernisation of the way that the NHS provides care. Our objective is for the NHS to be faster, fairer and more convenient. It will be more patient centred with patients having a greater involvement in service delivery. A good example of that is NHS Direct.
NHS Direct is extending care into the home. It is helping people take more responsibility for their own health and empowering them to become more proactive partners in their health care.
NHS Direct operates on a simple principle, which is to give people fast and convenient advice and information that enables them to look after themselves and their families when it is safe for them to do so. However, providing the information and advice that people need to enable them to share the responsibility for their own health does not end with the NHS Direct telephone service. I have ensured that NHS advice, should anyone inquire about dystonia, will refer callers to the relevant bodies.
More importantly, we have found that when people want more information on health, the internet is an extremely powerful tool. According to one recent survey, about 25 per cent, of adults in Britain use the internet in any one month. I recall that the most common topic that people search for on the internet, apart from sex and religion, is health. Clearly it is something that concerns the public.
One of the dangers of the internet is that the wealth of information that it provides is not necessarily reliable. With that in mind, we launched NHS Direct online in December 1999. It is the first comprehensive gateway to health information in the UK. Not only does it provide an electronic health care guide, it includes information about the NHS and how to use its services, facts and advice on health stories in the national media and pages on 200 specific diseases and their treatment.
NHS Direct online acts as a safe gateway to other health information and databases on the web. Information on health is one of the main reasons why people use the internet, but as I have said it is not always reliable.
When my hon. Friend chose dystonia as the subject for the debate, I entered it in the search field of the NHS Direct website and, to my delight, I found much useful information there on dystonia. It was there before my hon. Friend raised the issue. I would have been happy to say that as a result of the debate we are putting the information on the website, but to my surprise it was already there. It included details of support organisations, and evaluated patient information.
Our NHS Direct information points will also include information on dystonia. The information kiosks provide access in public places when people do not have access to the internet in their homes. There will be 153 NHS Direct information points in place this financial year in locations such as libraries, community centres, pharmacies, supermarkets and walk-in centres. The NHS plan includes the commitment more than 500 NHS Direct information points will be in place by 2004.
I checked whether there was an information point within my hon. Friend's constituency, and found that there is not one yet. The closest ones are at Dewsbury and Wakefield libraries.
NHS Direct is a key strand in our modernisation of the health service. It is a good example of how new technology can be harnessed to deliver real benefits to the public and help to address their need for information and advice about health and health services.
I would have been delighted if, as a result of my hon. Friend initiating the debate and putting the issue on the record, I could give a clear sign of where research may deliver some solutions. Unfortunately, I cannot do that. I can say that we are committed to finding a way and that the financial investment is there. In the meantime, all we can do is work on improving the treatment and raise awareness.
General practitioners in particular may see only one or two cases of dystonia in their professional life, but they may be helped by an interesting development that I have seen in some medical schools where video tapes of patients are used as teaching aids. Technology will help us to raise awareness, as will debates such as this, and an all-party group, to which my hon. Friend referred, will also be valuable.
I thank my hon. Friend for securing the debate and I hope that he will get in touch with the Department so that a meeting can be arranged. Some 38,000 people suffer from dystonia and I hope that, in future, we shall be able to give them a more hopeful message.
Question put and agreed to.
Adjourned accordingly at fourteen minutes to Twelve midnight.