§ 7.36 p.m.
§ Lord Harrison
rose to ask Her Majesty's Government what care is provided for sufferers from Parkinson's disease.
The noble Lord said: My Lords, Parkinson's disease,is a gift that just keeps on taking".So writes Canadian actor, Michael J Fox, in his uplifting autobiography, Lucky Man, where he retails movingly his coming out with Parkinson's at the young age of 30.
His embracing of the disease as something that has enriched his life—hence, the title, Lucky Man—is nothing short of heroic. But here in Britain every day a private tragedy is acted out by the 120,000 individuals similarly afflicted with Parkinson's, still conning their parts for a disease that locks fast minds in slow bodies. Their courage and fortitude matches Michael J Fox's 871 but has no similar public arena. Tonight's debate, I hope, will throw some light on a disease that is still little understood in contemporary Britain.
For most of us, Parkinson's is a chat show, not an affliction whose symptoms are tremors, stiffness and rigidity of the limbs, poverty of movement, pain, depression, fatigue and, sometimes, loss of expression in the face and voice. There is nothing theatrical about the rictus of pain borne by Parkinson's sufferers.
Nor are the disease's consequences restricted to those sufferers. In their penumbra stand the families, friends., medics, support services, and the cherished Parkinson's Disease Society itself, serving to mitigate the worst effects of the disease on their charges. They, too, in my book, deserve Oscars.
As vice-president of the Chester and District PDS, it has been my privilege to meet and learn from this close community, dedicated to defeating Parkinson's. And victory is in the wings. The research at Frenchay Hospital in Bristol in regenerating dormant dopamine-producing cells is heartening indeed. Moreover, any team boasting Billy Graham, Muhammad Ali, the Pope and the noble Lord, Lord Merlyn-Rees, on its side should have something going for success.
What can this House do to help? Our Select Committee's recent report, wisely setting down the conditions for innovative stem cell research, was a major advance. On a lighter note, the promotion of the PDS schools project card by the education Minister, my noble friend Lady Ashton, is a useful step in improving public understanding of the disease. But more needs to be done, and the Government are in a good position to help, especially in the aftermath of the recent Budget, dedicated to putting the NHS and, I hope, Parkinson's sufferers back on their feet.
Mis-diagnosis is a major bugbear in the treatment of Parkinson's disease. As many as three out of 10 patients are mis-diagnosed, but we are desperately short of those specialist neurologists who are key to the correct diagnosis of Parkinson's. The 350 neurologists in the United Kingdom today fall woefully short of the 1,000 needed to make a compelling difference. In Britain we have one neurologist to 177,000 of the population. France boasts a ratio of one to 38,000, Holland one to 25,000 and the United States one to 20,000. Indeed, our overworked complement of 350 practising neurologists today is equivalent to the number of neurologists America had at the end of World War II. They are overworked so that in my region of Merseyside neurologists have kindly volunteered to work gratis Sunday morning and evening clinics to ensure that the Government's target of a 26-week waiting limit for new referrals is met. The new, proposed 20-week limit is the straw that could break the camel's back. It really is time for this sensible Government to invest long term in Parkinson's. It is a mammoth task. Even if we increase numbers by 5 per cent a year, it will not be until 2034 that we have our full complement of needed neurologists.
General practitioners, too, need help. The relative rarity of the disease in my view requires that each primary care trust should appoint a lead GP able to 872 advise colleagues about diagnosis and referral, problems which particularly touch the young and the elderly.
Nursing specialists and welfare 'visitors, too, are vital. We need 125 more of the former and we should fund the latter. Why is it up to the local PDS branches to fund the vital welfare visitors? It is time to throw good money after good to complete the job of developing a modern, comprehensive health service.
Will my noble friend the Minister also review the Statutory Instrument changing the rules for qualifying for disability living allowance for PD sufferers? Does the Minister agree that because of the on-off syndrome associated with the disease, ability to walk, aided or unaided, should be judged over a seven-day period and not by single consultation? Can my noble friend say what the Government are doing to promote best practice among hospital and care home staff about the particular needs of Parkinson's sufferers; for example, ensuring that the vital medication is taken at the time of need and not wait for the drug round? Will the Government ensure that the smaller number of people who have young onset Parkinson's are exempted from prescription charges?
As regards brain pacemakers whose deep brain stimulation helps reduce tremors, do the Government recognise that fewer than one in 20 British patients currently benefit compared to one in three Swiss and one in I0 French? Can this situation be improved? Are the Government committed to introducing best practice from the Continent as promoted by the European Parkinson's Disease Association?
I conclude with the "Start of Coastin"' campaign of Tom Isaacs, a 33-year old sufferer who is currently walking the coast of Britain to raise awareness of Parkinson's. Is it not time that we stopped coasting on Parkinson's and accelerated help and encouragement to the lucky men and women who daily struggle so defiantly with this, the most deadly and debilitating of diseases? For Michael J Fox and all his fellow sufferers in Britain, is it not time that we got back to the future?
§ Lord Filkin
My Lords, it might be helpful to the House to mention that we have very limited time for the debate this evening and that if later speakers are not to suffer, it will be necessary for speeches to end when the clock turns to four minutes.
§ 7.44 p.m.
§ Baroness Masham of Ilton
My Lords, I am most grateful to the noble Lord, Lord Harrison, for asking this most important question. Unfortunately, I have to declare an interest, as my husband was found to have Parkinson's, but this was some time after he had had two strokes and was found to be a diabetic. While in hospital he developed a deep vein thrombosis, which he was discharged with and had to be re-admitted to another hospital as an emergency. After returning home he had a bleed in the brain from too much warfarin, which had not been adequately monitored by the GPs. I was getting desperate, and with advice from a friend who is a neurologist, I brought my 873 husband to London for assessment. Parkinson's disease was diagnosed at St Mary's hospital, Paddington.
It seems that there is still a great deal to learn about this complicated condition. What triggers it? Does it lie dormant? I know several people with it. It was revealing last week to hear Michael J Fox, the American actor, who developed Parkinson's while quite young, telling his story during Parkinson's Awareness Week.
There are many tips which can be passed on, such as kicking the ankle when the Parkinson's sufferer freezes; by putting white sticks on the ground to help them lift their feet or drink iced water to help swallowing. There is a useful booklet Looking After Your Bladder in Parkinsonism. It is a joint project by the Continence Foundation, the Parkinson's Disease Society and the Royal College of Nursing.
The specialist Parkinson's trained nurse can be of immense help to colleagues, patients and their carers. Last week I was told by an academic GP that there are only two such nurses in the whole of the West Midlands. I believe that there is not one in North Yorkshire. I cannot over-emphasise the immense help and value specialist advice gives, particularly in the monitoring of drugs, which can make all the difference to Parkinson's patients.
It is very clear that in the UK we have far fewer consultant neurologists than in all other European countries for which there are available data. There are so few neurologists in this country that most hospitals do not have a neurologist who is on site, especially in the north. The management of such patients is heavily dependent on the type of hospital into which the patient is admitted. It is a post-code lottery. That is not acceptable. If there are to be advances in the treatment of Parkinson's and these are to be available to all who need it, there must be more neurology centres of excellence. The Government have shown their determination to make the NHS work by allocating more money. It must go on patient care, not management power building.
The importance of professional interaction with specialist colleagues cannot be overestimated, for such contacts are a constant source of advice and education. There must be a specialist neurology network throughout the country if people with Parkinson's disease are to get the care they need.
§ 7.48 p.m.
§ Baroness Pitkeathley
My Lords, I, too, am grateful to my noble friend for giving us the opportunity to debate this important issue. I declare an interest as vice-president of both the Parkinson's Disease Society and of Carers UK.
I want to concentrate on the problems faced by those who have responsibility for caring for people with Parkinson's disease; the family members who willingly and with love provide care, often over a long period of time and often because of the particular 874 physical and emotional changes which are the result of this most cruel of illnesses, at great personal cost, economically, physically and emotionally.
However, I must first acknowledge the great progress that has been made for family carers both through the unrelenting campaigning of my colleagues at Carers UK and the Parkinson's Disease Society and through the sympathetic approach adopted by this Government. For example, the earnings limit on invalid care allowance has risen from £50 to £72. Proposals are in hand to re-name ICA carers' allowance and to allow carers over the age of 65 to claim invalid care allowance for the first time. The changes will also extend the payment of the care allowance for eight weeks after the death of the person being cared for.
Then there is the carer's grant, amounting to £85 million this year, and £100 million for the next and final year, which will enable local authorities to provide breaks for carers. This has produced some really innovative developments, including joint working between social services and the NHS. Then there is the state second pension, which will give carers in receipt of ICA a credit towards the second pension. Similarly, we should not forget the Carers and Disabled Children Act 2000, which I had the honour of taking through your Lordships' House. For the first time, this legislation gives carers a right to support services.
However, we cannot deny that many carers—perhaps most—remain isolated and unsupported. Perhaps I may highlight one or two areas of difficulty. Let us take, for example, hospital discharge. The report based on carers' experiences You Can Take Him Home Now, published by Carers UK last year, found that carers were overlooked, that their needs were not assessed, and that the person for whom they cared was discharged too soon.
I turn to funding under the Carers and Disabled Children Act, which is a serious problem. The Labour Party manifesto promised such funding, but a recent survey showed that only 18 per cent of local authorities found new resources last year to implement the Act's provisions. Many of those who care for someone suffering from Parkinson's disease understand that the identification of carers by GPs is vital. The National Strategy for Carers stated that GPs should have the systems in place by April 2000. However, the deadline was later extended to April 2002. Can my noble friend the Minister tell us whether his department has provided GPs with any information in this respect?
If any justification were needed for calling for more support for carers, it was made very clear in the report published by Carers UK, Without Us. The report shows that, if we had to provide substitute care for the care that carers provide, largely free of cost, we would, as a nation, have to find another £57 billion each year—the cost of another NHS. Those new figures are 70 per cent higher than the £34 billion that we have been using for some years. They show that the average carer saves the United Kingdom £10,000 every year.
875 The rise in the value of carers' support can be put down to three factors. First, the cost of replacement care increasing; secondly, the number of carers providing "significant" care having risen owing to funding for health and social care failing to keep pace with demand; and, thirdly, the fact that although more domiciliary care is provided in the community it concentrates on fewer people—with carers inevitably making up the shortfall.
The rise in the value of carers' support is a warning to policy makers about the extent to which our economy relies on the care provided by family and friends. It shows that if only a small number were to give up caring, perhaps through ill health or lack of support—who would blame any carer of someone with Parkinson's disease if he or she did so?—the economic impact would be dramatic. Given our future demographics and ageing population, it shows an urgent need for better recognition and support for carers.
§ 7.53 p.m.
§ Baroness Gale
My Lords, I, too, should like to thank my noble friend Lord Harrison for bringing this important debate before the House. Parkinson's disease affects not just the sufferer but the whole family. I speak with some knowledge on how the effects of the disease can also affect members of the family who live with it every day. My father was a victim of the disease. He was diagnosed at the age of 50, although he had obviously been suffering for several years previously. At that time, in the late 1950s, there was very little knowledge, research, or understanding of Parkinson's disease. It took a long time to diagnose my father's illness. Can noble Lords imagine being ill and not knowing what is wrong—and eventually being diagnosed of an illness which cannot be cured; where GPs have little knowledge and cannot offer much help other than to prescribe pain killers; where there is no support group, and no one to turn to for advice or help?
About 10 years later I discovered that the Parkinson's Disease Society had just been formed. I remember reading a letter in a daily newspaper from a Miss Jenkins, who wrote about the society. I contacted her immediately asking for more information. She had formed the society. Her sister had Parkinson's disease. They had found there was so little information available that they resolved to do something about it. I even had a visit from Miss Jenkins one day. It was good to learn from her of the work that was being undertaken. I received much information from the society, which I always passed on to my mother. She would then take it to our GP. I recall her saying that the doctor was very interested to receive the information, as he knew very little about Parkinson's disease.
I know that times have changed. However, I should like to pay tribute to the wonderful work that the Parkinson's Disease Society is doing. Since its earliest day, it has ensured that research has been carried out and that progress has been made. There are now 286 branches with 27,000 members. Imagine now how 876 much help and support those people are able to offer sufferers and their families. The research that the society carries out has brought new hope for sufferers, although, as we know, there is still a long way to go.
The situation has improved. On the medical side, more help is available to alleviate the symptoms associated with Parkinson's. Carers are now available to assist the family looking after a sufferer, and more financial help is available. But there is still much more that can be done to alleviate the problems, and to work with the sufferer and the family to help them to have a better quality of life.
The Parkinson's Disease Society is calling for more investment to ensure that there are more physiotherapists, speech and language therapists, and occupational therapists. It says that the provision of support for therapists is uneven and that national standards must be put in place and enforced. If this request alone could be granted, I am certain that it would be of tremendous help to sufferers.
In conclusion, much has been achieved over the years in the help and support available for the sufferers of Parkinson's disease. It is to be hoped that a cure may be found one day. In the mean time, every effort must be made to give as much help and support as possible so that sufferers and their families can be helped to live as normal a life as possible within the constraints of medical and community support.
§ 7.56 p.m.
§ Lord Williamson of Horton
My Lords, what I shall say in this short debate is mainly about the need to ensure that the potential new research and treatments for Parkinsons's disease—in particular, a very recent development—are followed through and adequately funded. That does not mean that I underrate the importance of the work being undertaken and planned for the care of Parkinson's sufferers; indeed, we have about 120,000 people in the United Kingdom with the disease. It is clear that there are problems with both the patient and the carer, which we must not forget.
However, I turn to the point that I wish to draw to the Minister's attention. The noble Lord will have noticed the recent announcement by the North Bristol NHS Trust of a pilot study at Frenchay Hospital, which may provide a breakthrough in the treatment of Parkinson's disease. There have been many false dawns in the treatment of this disease; and, in my view, that makes it all the more important that we should follow up these treatments, which—admittedly, in a very small sample—have shown a marked improvement in the symptoms for the patients treated.
The team at the Frenchay Hospital was led, by Steven Gill, a consultant neurosurgeon, with Peter Heywood, a consultant neurologist, Nik Patel, a neurosurgeon, and Karen O'Sullivan, who is a specialist nurse. It gives me pleasure to mention the specialist nurses, who are sometimes—but not in this case—forgotten. The treatment involves planting a catheter in a specific region of the brain that controls movement and is deficient in dopamine. Without dopamine the nerve cells cannot properly transmit 877 messages to the body, and this results in deterioration in movement. A pump then transmits to this area of the brain GDNF (glial-derived neurotrophic factor), which is a natural growth factor required for the development and maintenance of nerve cells producing dopamine.
There has been a clear improvement in the symptoms of the patients treated, and there is evidence from other sources that GDNF can block the degeneration of nerve cells. We can say that it can work, and that it has worked. What is important now is to move on to a larger scale trial because we do not know if the improvement is sustainable, or whether there may be unintended consequences.
I should say that I have a personal interest. I recently spent 10 days in the neurological ward of the Frenchay Hospital, under the care of Dr Heywood, which increased my interest in the possibilities of a more effective treatment of Parkinson's disease. Although, in some ways, 10 days in Frenchay Hospital was more interesting than 10 days in your Lordships' House, inevitably I spent some time playing cards with patients suffering from Parkinson's disease. I was, therefore, particularly pleased to see the comment made by Roger Nelson, who received the new treatment:I got to the stage where I could not deal or shuffle the cards, but now I can fan the cards, pick them out and play again".I understand that the research and pilot study have been funded by the Parkinson's Disease Society. I thank the society for that. But such charitable organisations are not wealthy and the point of my intervention today is to draw to the Minister's attention that, in my view, there is an obligation on the Department of Health to ensure that the next stage of the study does not fail because of lack of funding. I do not say that it should necessarily be funded by the Government, but by one means or another—perhaps by potential support from medical foundations or other organizations—the Minister should take care that this small-scale study does not stop at this stage, but has enough funding to go on to show whether it can provide even more benefits for those suffering from Parkinson's disease.
§ 8 p.m.
§ Lord Brookman
My Lords, I agree with other noble Lords that my noble friend Lord Harrison is to be complimented and thanked for raising the subject of Parkinson's disease, with particular reference to care and carers.
I declare an interest. I have an elder brother who suffers from Parkinson's disease. Knowing of his acute problems and the wonderful support given by his wife and family is one of the key reasons for putting my name down to speak.
Parkinson's disease awareness week was held in April. The admirable organisation, the Parkinson's Disease Society, founded in 1969 by a carer, Mali Jenkins—a People's Peer if ever there was one—makes 878 a telling point that Parkinson's disease affects all aspects of daily life for the individual and for the family who must also live with the condition.
Our hearts go out to all who suffer from the disease— some 120,000 in the UK alone—and to the tens of thousands who live with the disease by being partners, families and children of a sufferer. We who see loved ones suffering are unable to comprehend fully the magnitude of the problem facing those living with and caring for those suffering from the dreadful disease.
This debate gives us the opportunity to highlight the work of the Parkinson's Disease Society. Its guiding principles of research, support, information and advice require our support and that of the Government. As the society states:It is estimated that the current level of people over the age of 60 would increase by some 53 per cent by 2030—12.2 million to 18.7 million".Clearly, that will affect the number suffering with Parkinson's disease and other neurological conditions.
I am in no way a medical person, so reading some of the research undertaken by the society is very luminous. Currently there is no cure for the disease, but as research continues there will always be hope. Medication—that is drug treatment—and surgical interventions together with other therapies can and do play a part. But sadly serious shortfalls in neurologists, other specialists and Parkinson's disease nurse specialists make life difficult for those working in this area. To the best of my knowledge no nurse visits my brother. I believe that one should be available but it could be that Welsh stubbornness plays its part in that.
Investment is required in those areas, and I hope that the well-received announcements by the Chancellor in his Budget will ensure that those objectives are met. We all agree that Parkinson's disease is a dreadful illness and that although much is happening, and much has happened, more adequate support for those suffering from the disease is essential. The wonderful carers, specialist nurses, neurologists and other specialists deserve nothing less. I sincerely hope that the Government, working closely with the society and others, will bring about a better life and a better way forward for people like my brother. I await with interest to hear the views of the Minister.
§ 8.4 p.m.
§ Baroness Finlay of Llandaff
My Lords, I declare an interest as a hospice doctor who has cared for patients with end-stage Parkinson's disease, some of whom have been remarkably young and alarmingly rigid and unable to move.
My points relate to specialist services in the new NHS and to the importance of research as well as education and training. The care of patients depends crucially on an accurate diagnosis. If the diagnosis is wrong, the care will not be right. Diagnostic error is surprisingly common, to quote the textbook of the noble Lord, Lord Walton of Detchant. It requires neurologically-trained doctors to make an accurate 879 diagnosis. Parkinson's disease is a common condition. One in 100 people over 65 and one in 50 people over 80 will suffer from it. Sadly, one can see that instance reflected among the Members of this House.
There is an alarming shortage of neurologists. The noble Lord, Lord Brookman, spoke of his relative. Wales is even worse off compared with the rest of the UK. We have only one neurologist for every 277,000 of the population, which means that France, which has the next lowest ratio in Europe, has more than seven times as many neurologists per head of population than Wales.
There is a shortage of fully-resourced specialist centres for treatment and for research. Levodopa., the drug that was thought to be the gold standard in the 1970s, is effective. Prior to Levodopa the life expectancy of patients was, on average, nine years, but sadly the effectiveness of the drug wanes after five to 10 years. The situation is worse in young people. Patients whose disease starts under the age of 40 have a much more rapid failure of levodopa, so that by the time they have spent six years on treatment 100 per cent have complications from treatment and no longer benefit. It is important to note that one in 20 patients with the disease is under 40 at the time of diagnosis.
Many noble Lords will have seen the film "Awakenings" or read the book by Oliver Sachs that describes the great difference that dopamine-type drugs made in the post-viral Parkinsonism that was seen in New York. Levodopa and the other drugs have nasty side-effects, but there are exciting horizons in combining drugs with new delivery systems, including ways of delivering them through neurosurgery, as we have already heard.
Neurosurgery is not that expensive. I have done some cost calculations on deep-brain stimulation with the help of Mr Gill from Bristol. About 10 per cent of patients with Parkinson's disease may benefit from deep-brain stimulation, but it is offered to only about 0.1 per cent because of financial constraints. Patients' quality-of-life scores improve by 70 per cent and patients post-operatively have about 60 to 70 per cent of their day mobile, whereas it is only about 10 per cent pre-operatively.
The costings are that the deep-brain stimulator costs between £10,000 and £12,000; the surgery and support cost between £10,000 and £15,000; and the battery, costing £8,000, has to be replaced after five to eight years, giving a total cost of between £30,000 and £35,000. The drug requirements of patients fall by about 50 per cent post-operatively. The medication costs alone for a patient over five years who does not have surgery total about £80,000. So there is a significant saving of at least £5,000 per patient over five years. That is comparing the drug costs with the surgery costs and before one counts the savings in care costs. I point out that not only are specialist services and research needed, but that such a treatment may save costs in the long term.
My final plea is as a hospice doctor. Nowhere in the UK is there 50 per cent funding of hospices. Mostly, they are charitably funded from cancer care charities.
880 Sadly, that means that Parkinson's disease patients sometimes miss out because cancer patients tend to be taken as a priority over those with neurological disease. I urge the Government to look at specialist services as a saving and not as a major cost.
§ 8.10 p.m.
§ Lord Turnberg
My Lords, I want to concentrate my remarks on the need for research into this extremely distressing condition. Here I express an interest as scientific adviser to the Association of Medical Research Charities, of which the Parkinson's Disease Society is a member.
The fact is that despite an enormous amount of research effort we still have few clues about why the disease occurs, and our current treatments, I am afraid, are somewhat limited. It is only by more basic research that we can hope to break through this barrier of ignorance. And of course there are some fascinating glimpses of greater understanding and new treatments.
The genes which contribute to the disease are being elucidated and the biochemical disturbances underlying it are gradually being clarified. New forms of treatment—injection of stem cells of various sorts into the damaged areas of the brain; infusions of a neural growth factor, as we heard from the noble Lord, Lord Williamson, are proving interesting; electrical stimulation—all offer some hope. But there is an awful long way to go before we know whether any of those will really be successful for large numbers of patients for any length of time. And meanwhile we must press on with the research.
Yet there are many barriers to research which we have to overcome, and I do not just mean funding. Of course we need more funding. But I want to concentrate specifically on the barriers put up by public attitudes to research. While the 120,000 or so patients with Parkinson's disease and their relatives and carers are desperate for the research, others are more antipathetic. For example, there is antipathy to research using animals, when we know that animal research is able to give us enormous insights into the disease. The recently developed genetically modified mouse model of Parkinson's is an invaluable tool to study mechanisms of the disease and to try new treatments. But animal research has come under fire from a range of quarters.
Then there has been the antagonism to research using human embryonic stem cells, which again offers enormous potential for treatment. Though your Lordships' House has done a major service in its rational recommendations on stem cell research, there remains a little anxiety that that area of research may be threatened.
Perhaps a bigger threat is the fall-out from the Alder Hey affair, which has posed a major threat to the acquisition of human tissues on which so much important research depends. The Redfern report, written against a highly charged background, has caused—perhaps inadvertently—untold damage to research which is dependent on human tissues.
881 There are a whole range of other barriers to research, but I wanted to concentrate on those which relate to public attitudes. My question for the Minister will perhaps give him an opportunity to say what I know he really believes. Do the Government take these threats to research—the animal issue, the human tissue issue and the stem cell issue—seriously? I look forward to his response.
§ 8.12 p.m.
§ Lord Addington
My Lords, it is very difficult in four minutes to try to sum up the attitude of this debate, so I shall not try. But this debate has shown that whatever increase in funding is given to the National Health Service can certainly be spent very easily. Also, when we are calling for extra resources we are generally asking for extra people to be employed and for them to be better trained.
We then come on to the area which interests me most, and I shall try to address my remarks to that, though I feel slightly guilty because it is not the noble Lord's department to which my comments will be directed. Therefore I charge him with the duty of passing on to the Department for Work and Pensions my comments in relation to the tests it is implementing to allow a person to claim the lower mobility rate for the disability living allowance.
One of the criteria in the test is that one should be unable to go outside without support. Unfortunately, people with Parkinson's, as with other conditions such as multiple sclerosis, have good days and bad days; there are periods when the disease is particularly active and periods when it is not. That means that the assessment of medical need will have to be conducted over a period of time. It means that there will have to be some form of medical input or at least a reference to medical records over a long period of time. That will make it more difficult for people to be correctly assessed for the right allowances which the Government say people should receive.
Will the Department of Health tell the Department for Work and Pensions to be flexible? The current proposals going through the parliamentary system must have the capacity to be flexible to give help to the people it is intended should receive it. Unless we manage to do that—this is merely an example of the practice—unless we can break through those Chinese walls, we will end up misspending money. A problem in one department can have knock-on costs in another.
If somebody is unsure on their feet and every second day falls over, we will end up treating them on the National Health Service. Thus the budgets may be eaten up in casualty departments. That may be a trite way of putting it, but the principle is generally accepted.
When it comes to dealing with these problems we have to look sideways as well. There are knock-on benefits from having more therapists—particularly physiotherapists—trained within the health service, even if a high percentage of their time is put aside for dealing with such conditions as Parkinson's disease, as 882 we will still end up with greater resources for investment in other parts of the health service. I hope that the Government, when looking to help in this area, will always keep a weather eye on those knock-on benefits.
§ 8.16 p.m.
§ Earl Howe
My Lords, if this short debate has brought home one message, it is surely the devastating nature of Parkinson's disease and the scale of the suffering it causes. Some 120,000 people in this country are currently afflicted with it. That statistic alone should make us appreciate how vital it is that timely diagnosis and effective treatment should be accessible on the NHS, and I join other noble Lords in expressing my appreciation to the noble Lord, Lord Harrison, for giving us the opportunity to debate those issues.
Parkinson's presents doctors with an inherent difficulty: there is no clinical test for it. Misdiagnosis, both false positive and false negative, can, and frequently does, occur. That is perhaps not surprising given that some of the initial symptoms of PD are shared by other neurological conditions. But that difficulty is compounded by the fact that diagnosing Parkinson's is outside the range of expertise of many, if not most, GPs because the number of patients suffering from it per practice will on average be very few. That means that most GPs as a matter of routine refer suspected cases of Parkinson's to a neurological specialist.
The waiting time to see a specialist is often long. We are very short indeed of neurologists in this country, as most noble Lords have said. At present there are only 350 of them and of those only around 60 have specific expertise in Parkinson's. That is about half the number we should have in relation to the size of our population and several times fewer per head of population than many other European countries. Like other noble Lords, I hope that the Minister can comment on that issue.
We are also short of nurse specialists who give a vital service to patients and their families. The care of a Parkinson's patient is not just about providing appropriate medication; it is also about making sure that he or she receives emotional support as well as all the right information about how to manage the disease. The better the support, the longer a patient can maintain independence and the lower the cost of care to the public purse. What plans are there to increase the number of specialist nurses?
The Social Policy Ageing and Information Network reported last year that the lives of 1 million elderly people are at risk because they are not getting basic care and support at home and there are too few places in suitable residential care homes. That leads to nearly 700,000 delayed discharges from hospitals every year. The Government have provided specific funding to sort out such delays, but I doubt whether the sums earmarked will go very far towards funding the necessary degree of long-term support and social care for those very vulnerable individuals who cannot look after themselves.
883 Setting aside delayed discharges, hospital is not always the best place to be a Parkinson's disease patient. Many sufferers reported that hospital staff simply do not appreciate that medication for Parkinson's is time critical. The consequences of delaying medication even briefly can be extremely serious. I too should like to pay tribute to the Parkinson's Disease Society which has done so much to raise awareness about the disease and to provide information and support to patients. The unnecessary errors in the treatment of Parkinson's disease patients in hospital have been highlighted by the society as one example of the need for awareness-raising in the broadest sense.
Like other noble Lords, I look forward to the publication of the national service framework. I wish that that could take place sooner than 2005. However, the longer-term future for PD treatment looks exciting. A number of advances emerging from research, including deep-brain stimulation, new drugs, neurosurgery by robot, brain tissue transplants and recent discoveries in genetics provide real hope that this distressing condition will one day be overcome. I hope that the UK—indeed, the NHS—will be in the vanguard of harnessing proven advances in treatment to the benefit of patients.
§ 8.20 p.m.
§ Lord Hunt of Kings Heath
My Lords, I echo the words of other noble Lords in thanking my noble friend Lord Harrison for initiating this debate. The fact that so many noble Lords spoke suggests that the debate has been well worth while and I am sorry that the time available is so short.
My noble friend Lord Harrison described well the experience of people with Parkinson's disease. My noble friend Lord Brookman reminded us of the impact on their loved ones. My noble friend Lord Harrison spoke about the close community dedicated to conquering the disease and to helping and supporting those who suffer from it. They are a large number of people. It is estimated that there are approximately 18 new cases per 100,000 people each year and that more than 120,000 people in the UK have Parkinson's disease.
It is also clear that there are big challenges to face over diagnosis, speedy referral, appropriate services and appropriate support. The noble Earl, Lord Howe, referred to the national service framework for longterm conditions, which will give us a clear framework to deal with diagnosis, rapid referral and appropriate services.
In February 2001, my right honourable friend the Secretary of State announced the development of a national service framework for long-term conditions. It will have a particular focus on people with neurological conditions and brain and spinal injury, including services for people with epilepsy, multiple sclerosis, Parkinson's disease, motor neurone disease and other similar conditions. We intend to consult a wide range of stakeholders—that will be a feature throughout the development of national service 884 frameworks. Already, voluntary and professional organisations, including the Parkinson's Disease Society, patients, carers and experts have been involved in the early scoping work.
The noble Earl, Lord Howe, expressed disappointment about the timetable. I, too, wish that we could introduce national service frameworks more quickly, but we must recognise that there must be a proper timetable. We must ensure that the service is able to take on new responsibilities that will be placed on it. The importance of national service frameworks cannot be underestimated. Their implementation should ensure that we get consistency, good quality services and reduced regional variations and inequalities in access to those services. In the long run, people suffering from Parkinson's disease will undoubtedly benefit from those improvements. But, of course, I understand the frustrations of those who wish that the national service frameworks could have been introduced earlier than 2005.
Several noble Lords, including my noble friends Lord Brookman and Lord Harrison, the noble Baroness, Lady Finlay of Llandaff, and the noble Earl, Lord Howe, raised the question of the number of neurologists. There is no question that we have an acute shortage of neurologists. We have set out clear plans to increase the number of consultants generally. Of course, within that, there will be an increase in the number of neurologists. We have already announced a increase of up to 15 specialist registrars in neurology for 2002–04. The long-term conditions care group workforce team is considering a workforce strategy to underpin the national service frameworks to which I referred.
An additional 140 trained specialists will he available to take up consultant posts in neurology by 2009. That is a significant increase, but I recognise that noble Lords would want us to go further. Without giving any commitment, the national service framework and the workforce planning that will need to go alongside will give us a further opportunity to consider those figures.
Of course, although consultant neurologists are vital, it is not just doctors who are needed. I was glad that several noble Lords—in particular, the noble Baroness, Lady Masham of Ilton—referred to the critical importance of specialist nurses. The first specialist Parkinson's disease nurses in the NHS were appointed in 1989. Let me place on record the Government's tribute to the work of such nurses. They are traditionally developed and initially funded by the Parkinson's Disease Society, with the NHS taking over funding after one or two years. The role of the nurse is to co-ordinate the care of those with the condition and provide a reliable source of information and support. Such nurses are instrumental in raising awareness of education and training. There is no doubt that they are making a wonderful impact by supporting and improving the lives of people affected by Parkinson's disease.
I also listened with great interest to what was said about general practitioners and their skills in this area. Again, the national service framework will help, but it 885 is also worth mentioning our initiative to encourage GPs to develop special clinical interests. That is an area of great potential and I hope that primary care trusts will take that to heart as they develop their plans for the future.
The noble Earl, Lord Howe, raised the issue of residential care, as he frequently does. The new incentive systems that we propose for delayed discharges and the increase in the personal social services budget for the next three years will enhance the viability of care homes. We may just touch on that issue again next Wednesday.
Several noble Lords, including my noble friends Lady Gale and Lord Brookman, mentioned the Parkinson's Disease Society. I have already referred to the immensely valuable work that it is undertaking, but that allows me to pay tribute to Mary Baker, its previous leader. What tremendous work she did. It is good that she is now President of the European Parkinson's Disease Association. I am sure that what she did in the UK will now be done in Europe. I pity the bureaucrats of Brussels—but not much. Her successor, Linda Kelly, is taking on the good work and we offer her every support.
We have no intention to extend the current exemption arrangements for prescription charges. More than 85 per cent of NHS prescription items are dispensed free of charge, and we think that that is the best approach. Also, those who pay prescription charges can seek help under the NHS low income scheme or through purchase of a prescription prepayment certificate.
My noble friend Lady Pitkeathley mentioned carers. No one in the country knows more about the issue than my noble friend. She paid tribute to our national carers strategy—but of course, she played such a crucial role in its development and continuing improvement. She mentioned the Carers and Disabled Children Act 2000, which she took through your Lordships' House. It is an important framework and foundation for the continued development and support of carers. My noble friend kindly gave me notice that she would raise the issue of the survey carried out by the Association of Directors of Social Services of progress in the assessment of carers. I know that it expresses some disappointment about the progress that has been made. We shall study the survey results with great care. My noble friend asked about funding, and the survey results will be helpful when we consider future spending plans in the 2002 spending review.
I accept that we need to know more about the identification of carers by GPs. Given the time available, I offer to write to the noble Baroness setting out the position in respect of that important issue.
The noble Lord, Lord Addington, raised the issue of the Social Security (Disability Living Allowance) (Amendment) Regulations 2002 and the specific issue of flexibility in relation to good and bad days. I shall discuss it with the Department for Work and Pensions and come back to the noble Lord. I am aware of the issue, but I would like to consider it in more detail.
886 The noble Baroness, Lady Finlay of Llandaff, raised the important issue of palliative care. She will know that, in England, we are committed to matching the money raised by the voluntary sector with the money that the NHS spends, including grants to the voluntary sector. I do not know the position in Wales, but we are aware of the funding issues. I recognise the competitiveness of the arena in which voluntary organisations must raise funds, and I spoke to the Association of Fundraisers in Palliative Care on Sunday. It is important that the hospice movement should maintain its independence. The fact that it raises so much money enhances that independence.
My noble friend Lord Turnberg raised several important issues relating to research and spoke about barriers. I shall respond on the issue of animal research. I have been distressed by the activities of some people in this country who have sought, through the most disgraceful methods, to hinder, threaten and intimidate people going about their lawful business and conducting research that will have an enormous impact on the improvement of conditions for many people.
Noble Lords will know that the Government have taken action. We have legislated, and we support properly regulated research that attempts to reduce and minimise the number of animals used in research. Ultimately, however, I am convinced that we must use animals, and I offer my wholehearted support to the reputable people who do that. We cannot allow a situation in which the people who do such research are intimidated. The sort of intimidation which places like Huntingdon Life Sciences have had to put up with only fills me with tremendous admiration for the people who work in such laboratories.
We had an interesting discussion about the research that is now available. We are considering the clinical effectiveness of deep-brain stimulation. The MRC is funding a research trial, and the Parkinson's Disease Society has also put a considerable amount of money into that trial. I understand that the trial will run for five years, to 2006, with a further five-year follow-up period. Unfortunately, proper, robust research takes time, but we must do it to inform the future development of services.
The Frenchay Hospital research is extremely interesting. As the noble Lord, Lord Williamson of Horton, suggested, it may provide a breakthrough in the treatment of the condition. The preliminary results show a marked improvement in the symptoms of all five patients. My understanding is that it is the first time that such improvement has occurred in patients with a chronic neurological disease following the infusion of a growth factor.
I understand that the trust concerned receives a considerable amount of money from the NHS research and development fund. However, I am happy to examine the funding in more detail to see whether there are any problems. I shall come back to the noble Lord on that.
Time is against me. It has been an invaluable debate, and there are more things that we must do. In particular, I listened carefully to what was said about 887 guidance and training to enable speedy diagnosis, referral and provision of services. We must consider workforce planning, and the NSF will be helpful when we examine staff numbers. Above all, we must ensure that the NHS provides the sensitive support services that are required by people who suffer from Parkinson's disease.
I end by congratulating my noble friend on raising so many important issues. I am grateful to all noble Lords who spoke. Undoubtedly, our debate will inform the development of policy in the department, and I shall make sure that the relevant columns of Hansard are brought to the attention of those working on the national service framework.