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SCIENCE AND TECHNOLOGY COMMITTEE
Order read for resuming adjourned debate on Question [31 January],
- That the Select Committee on Science and Technology shall have leave to meet concurrently with any committee of the Lords on science and technology or any sub-committee thereof, for the purpose of deliberating or taking evidence, and to communicate to any such committee its evidence or any other documents relating to matters of common interest.--[Mr. Pope.]
SELECT COMMITTEES (JOINT MEETINGS)
- That, for the current Session of Parliament, Standing Order No. 152 (Select committees related to government departments) be amended as follows:
Line 40, before the word 'European' insert the words 'Environmental Audit Committee or with the'.
Line 50, before the word 'European' insert the words 'Environmental Audit Committee or with the'.
Line 52, at the end insert the words:--
'(4A) notwithstanding paragraphs (2) and (4) above, where more than two committees or sub-committees appointed under this order meet concurrently in accordance with paragraph (4)(e) above, the quorum of each such committee or sub-committee shall be two.'--[Mr. Pope.]
SITTINGS IN WESTMINSTER HALL
Order read for resuming adjourned debate on Question [23 January],
- That, following the Order [20th November 2000], Mr. Nicholas Winterton, Mr. John McWilliam, Mr. Barry Jones and Frank Cook be appointed to act as additional Deputy Speakers at sittings in Westminster Hall during this Session.--[Mr. Pope.]
LANGUAGE OF PARLIAMENTARY PROCEEDINGS
- That--
(1) this House approves the First Report from the Procedure Committee, Session 2000-01 (HC 47); and
(2) the Resolution of 5th June 1996 on the Language of Parliamentary Proceedings be amended accordingly by inserting, after the word 'Wales,', the words 'and at Westminster in respect of Select Committees'.--[Mr. Pope.]
Parkinson's Disease
Motion made, and Question proposed, That this House do now adjourn.--[Mr. Pope.]
2.30 pm
Mr. Gareth R. Thomas (Harrow, West): Parkinson's disease is a progressive neurological condition caused when 80 per cent. of dopamine-producing cells die in the brain. Dopamine is a chemical transmitter that plays an important role in sending signals in the brain regarding movement. The three basic symptoms of Parkinson's are tremor, stiffness or rigidity and slowness or poverty of movement.
A recent study has shown that over the past 30 years, despite decreasing mortality rates for the under-75s, the prevalence of Parkinson's disease is probably about 200 per 100,000 of the population. Parkinson's affects all aspects of daily living for the individual and the family who must live with the condition. The condition fluctuates, within the day and from day to day, and it affects no two people, exactly the same.
Parkinson's has a devastating impact on all aspects of life. It can, for example, affect a wide range of movements, including facial expressions. People speak of the "Parkinsonian mask": a person with the condition may have a still facial expression, and not smile as easily and readily as he or she used to. The person's tone of voice may change, and he or she may speak more softly or even in a monotone. When that is linked with a loss of facial expression, it can be more readily appreciated how close family relationships can be weakened by the impact of just those two symptoms.
Fatigue can also be a real problem, while at the same time there can be difficulties with sleeping and with turning over in bed. Pain can be a constant problem for many people. I am told by the excellent Parkinson's Disease Society that some 40 per cent. of people living with Parkinson's experience depression, and that that is not simply a reaction to the condition but a feature of the disease itself.
Writing in the society's magazine, Emma Bennion described the impact of the condition on her. She said:
- "My family and I have had the misfortune of suffering from Parkinson's disease for over ten years now. I use the word 'suffer' very deliberately because, as a patient or carer or family member, I believe that all of us suffer, in varying degrees, from this debilitating disease. As time moves on and the disease progresses I believe it is a fine balance as to who suffers most."
We do know that for many people drug treatments can be effective in the short term, but longer-term complications are associated with drug therapies. They may include loss of taste--the enjoyment of food may be lost. Owing to that, as well as other aspects of the condition, a person with Parkinson's may become very reluctant to go out for a meal, or enjoy having friends to dinner at home. Many people suffer from hallucinations
as a side-effect of the drugs, which can be extremely frightening and alarming for patient and family. In many instances, involuntary movements known as dyskinesias can be a disabling side-effect of long-term drug therapies.A number of surgical interventions can offer some relief from symptoms in a relatively small number of cases, but risks are involved in surgery. In any event, the disease continues to progress even after the intervention.
About 120,000 people in the United Kingdom are living with Parkinson's disease themselves, but we should bear in mind the fact that their partners, families and children are also affected by the impact of the condition. Some 1 million people in the UK are estimated to be living with Parkinson's in one way or another.
The incidence of the condition increases with age. However, we know that about one in seven people with Parkinson's is diagnosed before the age of 50. The Canadian actor Michael J. Fox is a classic case of someone diagnosed with Parkinson's at a relatively young age: in his case, around 30.
Given the increase in the incidence of Parkinson's with age, we need to bear it in mind that demographic changes already in train will lead to a huge increase in the population of people aged over 60. The Department of Trade and Industry foresight programme predicted that the number of people in the United Kingdom over 60 would increase by some 53 per cent. by 2030. Its forecast is that the current number of 12.2 million people aged over 60 will rise to 18.7 million by 2030. That means that an increasing number of people will be affected by Parkinson's and by other neurological conditions unless we can intervene to develop effective treatments and, indeed, a cure by that time.
Given the current absence of a cure, I welcome the Government's and now Parliament's decision to allow the Human Fertilisation and Embryology Authority to license strictly controlled individual research projects involving embryonic stem cells for the development of tissue for transplantation. I recognise the difficulties that that poses for some people, but I strongly believe that the decision was morally right, given that expert medical opinion states that there are likely to be limitations to the type of tissue that can be derived from adult stem cells, and that research could accelerate the search and, indeed, could turn out to be the only route to a cure for that terrible disease.
Scientists believe that they will be able to develop dopamine-producing cells from embryonic stem cells, which would be implanted into the brain. Those cells should be able to replenish the supply of dopamine and therefore eliminate the symptoms. Scientists have effectively cured Parkinson's in animal trials. The change in the law means that they can proceed with research for people. According to The Independent on 23 January, scientists believe that they could be in a position to have clinical trials in as little as three years.
I strongly support the proposal before the Medical Research Council for surgical trials for deep-brain stimulation to examine its impact on improving the quality of life for Parkinson's disease patients. I hope that my hon. Friend the Minister will be able to give that a push.
There is frequently a significant gap between the onset of symptoms and the diagnosis of Parkinson's. There are essentially two reasons for that. The first is that there is no
clinical test for Parkinson's. Diagnosis is based on clinical observation by a doctor, medical history and positive reactions to anti-Parkinsonian drugs. The second is that a number of related conditions can be confused with Parkinson's. The major ones are multiple systems atrophy and progressive supranuclear palsy. Although in their initial stages those conditions bear a strong resemblance to Parkinson's, the drug regimes differ remarkably.It is common to attribute rigidity, one of the symptoms of Parkinson's, to arthritis and to attribute a tremor, another symptom, to stress. Research by David Burn at Newcastle upon Tyne university has shown that there is a mis-diagnosis rate--both positive and negative--of between 25 and 30 per cent. At the moment, it can be confirmed only post-mortem, although the use of a new diagnostic tool--DAT scanners--should lead to an improvement in the mis-diagnosis rate.
Parkinson's is uncommon enough to be outside the range of the expertise of most general practitioners; there are only an average of four patients with Parkinson's per GP practice. Some GPs do diagnose Parkinson's, but most will refer suspected patients to neurologists for confirmation. Clearly, it is imperative that a patient who is suspected of having Parkinson's be referred to a specialist before any drug treatment begins and be regularly monitored for his response to those drugs. There is, however, a serious shortfall of neurologists and other specialists, which can mean a long wait for consultation.
I understand that the Association of British Neurologists recommends one neurologist per 100,000 people. At the moment, Britain has just 350 neurologists and only 60 have specific expertise in Parkinson's disease. We therefore need to work towards doubling the number of neurologists in Britain. At just six per 1 million people, our number of neurologists compares particularly poorly with Denmark, which has 100 neurologists per 1 million of its population; Italy, which has 71 per 1 million; or even the United States, which has 40 per million.
I recognise that the Government are addressing the issue of the shortage of doctors in the national health service, but I hope that my hon. Friend the Minister will be able to explain further the specific plan to respond to the particular need for neurologists. Access to a specialist can make an enormous difference to how an individual copes with diagnosis, especially as the specialist can explain the progression of the condition and the available treatment options.
Responses to a Parkinson's Disease Society survey showed that only 44 per cent. of Parkinson's sufferers thought that they had received a clear explanation of the condition and the available treatment when they were diagnosed. Those who did not receive an adequate explanation were left feeling confused, pessimistic about their future and unsure about where to turn for help and support.
The Parkinson's Disease Society has called for a national service framework for neurological conditions that would set national standards on access to neurologists and on services such as speech therapy, physiotherapy and occupational therapy. Although the Government's intention to introduce a national service framework for older people is welcome, such a framework would be inappropriate for the significant number of people under 65 who are diagnosed with Parkinson's.
Why should we not also have a national education programme, first in primary care, in which at least one general practitioner in each primary care group or trust undertakes the role of specialist in Parkinson's? Hospital and care home staff, too, require education in aspects of care for people with Parkinson's. Each patient, for example, has a different and very individual medication timetable, and a delay of even a few minutes can make an enormous difference to them. In fact, 75 per cent. of patients who responded to a Parkinson's Disease Society survey thought that otherwise excellent hospital staff did not understand that point and therefore provided medication only when making a drug round.
Once someone has been diagnosed with Parkinson's disease, it is crucial that support mechanisms are developed and implemented to ease the problems that they and their carers will have to face. With appropriate support, independence can be maintained for far longer than in the past. Access to specialist advice, however, is particularly important.
Given the currently limited number of neurologists, Parkinson's disease nurse specialists provide a vital service to patients and their family and friends. They are also instrumental in ensuring that patients are informed and are therefore made partners in managing their own disease. Nurse specialists make a major improvement to the quality of care and information available, and they achieve savings in local health and social services expenditure. They are also an important link between people with Parkinson's and other health and social care professionals, providing information on drugs, monitoring therapies, providing education and training and offering essential emotional support.
The Parkinson's Disease Society has been campaigning to extend the numbers of nurse specialists and has even been pump-priming the first wave of such nurse specialists. I understand that 81 nurse specialists are currently in post, but there needs to be at least 240 if the current Parkinsonian population is to be adequately served. In my constituency, people with Parkinson's do not have access to such a specialist nurse. However, thanks to the campaigning of Mr. Lorden Trickey and the Harrow Parkinson's Disease Society, there is a real possibility that such a service will be provided.
I also understand that Brent and Harrow health authority has recognised the need to reorganise and improve its response to a variety of people with chronic diseases, including Parkinson's, with one-stop-shop-style access to physiotherapy, speech therapy and occupational therapy that is located in the same place as self-support groups and, crucially, a specialist nurse. Additional funding from the considerable extra investment for the national health service set aside by my right hon. Friend the Chancellor of the Exchequer for improving support to patients with chronic diseases will clearly be necessary and welcome to facilitate that type of change and improvement in services. Meanwhile, my constituents with Parkinson's, anxious for support, have to travel to the Colindale day unit, in the London borough of Barnet, where the particular interest and skill of Dr. Mathew has ensured that that is the nearest service to one focusing specifically on the needs of Parkinsonian patients. Why should there not also be a specialist nurse based at that excellent unit?
For long-term conditions such as Parkinson's, respite care is extremely important. I welcome the Government's allocation of carers' grants to local authorities to expand respite care provision. The excellent Harrow carer centre, based in Pinner Green in my constituency, has done a superb job in supporting carers in Harrow. The Carers National Association reports that some 40 per cent. of carers have no help with caring at all and that that has had an adverse impact on their own health.
The provision of high-quality respite care services can make an enormous difference to the quality of life of both patient and carer; in particular, provision of emergency respite care--where a crisis affecting the carer occurs--should be available so that patients are not forced into a residential setting which often becomes permanent.
Respite support is crucial to help maintain independence but, as the disease progresses, it may become necessary where more specialist support can be provided. The Government's decision fully to fund nursing care in England is extremely welcome, but people with Parkinson's will often need personal care in the later stages, including help with feeding and bathing. This care is crucial to their survival. Some patients feel that they are being penalised for having a chronic condition rather than an acute one, which would be funded by the public purse.
I recognise that difficult choices have had to be made in response to the Sutherland commission. I hope that Ministers will keep under careful review the financial issues for patients with Parkinson's who need personal care.
Twenty years ago, to be diagnosed with Parkinson's was to be given a lingering life sentence: no parole, no time off for good behaviour and no commuting of the sentence. Now there is real hope of being able to halt the progression of the disease; perhaps, in time, even of a cure. In the meantime, I look forward to Ministers encouraging the further improvement of services to those with Parkinson's.
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