§ 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.Parkinson's is a long-term degenerative condition. As the loss of dopamine-producing cells in the brain continues, the symptoms become more severe and the person becomes increasingly disabled. There is no cure at present, and although we know that the loss of dopamine-producing cells causes the onset of the condition, we do not yet know exactly what causes those cells to die.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 636 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 637 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.
638 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?
639 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.
§ The Parliamentary Under-Secretary of State for Health (Yvette Cooper)I congratulate my hon. Friend the Member for Harrow, West (Mr. Thomas) on securing the debate and on his work to raise awareness of this progressive and disabling condition. I commend him also for his work to enable improvements in research and care into Parkinson's disease.
I pay tribute to the Parkinson's Disease Society, which does an immense amount of work across the board to support those suffering from the disease, as well as their families. The House will have become aware of the society's work though the debate on stem cell research, which, according to scientists, has immense potential to provide benefits or cures for Parkinson's disease in particular.
The tireless lobbying of the society brought home to many Members of this House and the other place the real human stories behind the scientific and medical research that we discussed not long ago. The matter was decided on a free vote, but I am glad that the research will go ahead with proper regulations and restrictions, given its 640 potential to relieve suffering from a disabling disease. I pay tribute to Mary Baker, who has done a huge amount of work for the society and is due to retire later this year.
Parkinson's disease is a progressive neurological disorder affecting voluntary movements such as walking, talking and writing. The risk of developing it increases with age. It is a tragic fact that more than 120,000 people suffer from Parkinson's disease in the United Kingdom today, and it is common in all parts of the world.
Parkinson's is thought to result from loss of the chemical messenger, dopamine. It is treated mainly with drug therapy, using levadopa. Because no two people experience Parkinson's in exactly the same way, treatment is tailored to meet the needs of individual patients. Drugs are not, however, the only way to treat Parkinson's; management of the condition can also involve nursing, physiotherapy, speech therapy and occupational therapy. It is vital that those suffering from the disease should receive the right support, diagnosis and treatment.
My hon. Friend referred to the number of neurologists. He is right that the Government are committed to expanding the number of doctors and specialists across the board. I shall certainly take back to my Department the points that he raised about consultant and neurologist numbers. The specialist work force advisory group has been reviewing the numbers of consultants in neurosurgery annually and taking account of the views of the Royal College of Surgeons, postgraduate medical deans, NHS management and internal policy colleagues. Their view is that sufficient higher specialist training places exist for enough candidates to come through.
The first specialist Parkinson's disease nurse was appointed to the NHS in 1989. The nurses' aim has been to work from hospitals and in the community, utilising existing resources and the expertise of health care teams to improve the quality of life for sufferers and their families. The nurses not only co-ordinate the care of people with Parkinson's, but provide a reliable source of information and support to families as well as to those suffering. The Parkinson's Disease Society is keen to standardise the education of nurse specialists. Bursaries are available for nurses who wish to further their skills working with people with Parkinson's disease.
The Department of Health is interested in the development of neurological nursing, of which Parkinson's disease nurses are a successful example. We are keen to develop the concept of the specialist nurses and to break down traditional professional barriers that have existed for a long time. There is huge scope to use specialist nurses to provide better care. I was very interested in my hon. Friend's points.
On 5 February, my Department will host a neurological nursing symposium to take stock of developments in nursing roles and care models that support people. I hope that the subject will be discussed in detail on that occasion, because neurological nurses and the Parkinson's Disease Society will be represented.
The main Government agency for research into the causes of, and treatments for, disease is the Medical Research Council, which receives its funding through the Department of Trade and Industry. It is a long-standing 641 and important principle of successive Governments not to prescribe the detail of how individual research councils should distribute resources between competing priorities. That is best decided by researchers and research users. However, the Medical Research Council takes all those factors into account when it makes decisions on research projects, such as those into Parkinson's Disease.
In 1999–2000, the MRC provided more than £3 million for research into movement disorders, including Parkinson's disease. A major research project into the disease is also under way. The MRC has provided Professor Richard Gray with £940,000 to fund a study into the effectiveness of new and old drugs for Parkinson's disease. The Government want improving and successful research into Parkinson's disease, and I hope that progress in stem cell research will provide new opportunities to advance that work and achieve a breakthrough in treatment and support for those with Parkinson's disease.
My hon. Friend mentioned the role played by carers and the importance of caring support for those with Parkinson's disease. There are some 5.7 million carers in Great Britain. The national carers strategy was drawn up to improve carers' access to breaks, respite care, information and support. The carers' special grant, which my hon. Friend mentioned, has already begun to change the way in which local councils think about support for carers. It was launched in 1999 and will run for an extra two years until 2004.
The grant is designed to help local authorities to make a strategic shift towards developing the kind of breaks and respite care and the range and diversity of services required to give carers the flexibility and accessibility that they need. As my hon. Friend said, no individual's experience of the disease is the same as another's, and no treatment regime can be the same. Equally, no pattern of carers' needs can be the same. Services therefore need to be sufficiently diverse and supportive. The Government will continue to support work for carers. We will increase the money put aside to support carers in England, and we expect funding to rise from £50 million this year to £100 million by 2003–04.
My hon. Friend asked about responding to the royal commission, and about nursing care and personal care. We are keen to use the growing resources at our disposal to invest in new health and social care services for older people. The funding will amount to an extra £1.4 billion by 2003–04.
642 New intermediate care services, including personal care, will be free at the point of use, and will help many older people to live independently at home for longer. However, the Government's view was that providing universal free personal care, as recommended by the royal commission, would not have improved front-line services. Nor would it have benefited the least well-off, as seven out of 10 people in residential care already have some or all their personal costs paid.
With the resources available to us, we believe that the choices that we have made are correct, and will mean that fewer older people have to go into long-term residential care. The proposals on free nursing care will benefit up to 35,000 people, and save them about £5,000 a year on their care. That will support not only those with Parkinson's disease and their families, but everyone else in need of long-term residential care.
Finally, my hon. Friend talked about improving standards of treatment, referral protocols and early diagnosis. He will be aware that the Government are keen to see new national standards rolling out in every area, and to tackle the postcode lottery and improve standards of care across the board, not only for Parkinson's disease, but for other conditions. He will also be aware that rolling out those national standards and assessments for every condition and every area will take us some time. We are certainly well aware of the importance of neurological conditions such as Parkinson's disease. We are considering the subject in great detail and are keen to extend work on national standards and improve treatment and care across the board.
I hope that my hon. Friend will agree that the Government are sympathetic to the needs of patients with Parkinson's disease. A lot of work has already been done, but there is much left to do on research, treatment and care. We believe that over time, our extra investment in the NHS will make a considerable difference to patients suffering from Parkinson's disease, their families and others.
I pay tribute again to my hon. Friend's work in raising awareness of the condition, and in campaigning for improvements in treatment and care. I hope that he will agree that working together, and with the Parkinson's Disease Society, we can continue to bring about improvements for those who suffer from that disease.
§ Question put and agreed to.
§ Adjourned accordingly at two minutes to Three o'clock.