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The Parliamentary Under-Secretary of State, Department of Health (Lord Hunt of Kings Heath): Perhaps the noble Lord will give way. I could not resist intervening. Can I take it that he fully supports the introduction of the National Institute for Clinical Excellence, which is designed to show that we have robust evidence of cost-effective clinical treatments?
Lord Lucas: Yes, but if the noble Lord had not been yacking to his medical colleagues on the Back Benches, he would have heard me say so.
Baroness Ashton of Upholland: I fear that—
Baroness Blatch: I shall be brief because I know that people are waiting to get on with the next debate. I would not normally support this type of amendment. I believe that evaluation should be carried out at school level. It seems to me that to be responsive to the parents and for validation to be carried out externally through inspection would be the right way to go.
However, I shall support both Amendments Nos. 20 and 25, first, on the grounds that what the amendments seek to achieve would flush out the legislation that acts as an inhibitor, and therefore we should all be able to answer the question that the
Minister is unable to answer today. Secondly, the annual report to Parliament would quantify the number of applications. However, I hope that, in addition, it would include the number of schools that would apply which would discover that they did not need legislative exemption at all. Thus, we would know what quantity of work had been involved in implementing the early part of the Bill.
Baroness Ashton of Upholland: I apologise for rising too early. I lost my grip on how the Committee stage works during the intervention from my noble friend.
The purpose of the power to innovate is to pilot innovative proposals which might be adopted more widely through further legislation if they were successful in raising educational standards. I agree with the noble Lord, Lord Lucas, that the use of the power should receive proper evaluation and that, where appropriate, that evaluation should be independent and published. I can give the Committee the assurance that, because we want to learn the lessons of innovation, we shall certainly expect good quality evaluation of projects.
However, I hope that the noble Lord will also recognise that the nature of evaluation will vary enormously, depending on the type and size of project involved, and so on. In some cases, for example, it is possible that interviews with people directly impacted will be sufficient; in others, it will require detailed performance analysis or survey work.
We want to see evaluation that is fit for its purpose, with the proposer—whether it is a school or the local education authority—putting forward the kind of evaluation that is appropriate to the project. They will have the most direct experience of the projects and will have most to learn from the experience of the lessons being put into practice.
We shall, of course, also have a keen interest in the lessons to be learned. We shall work with individual projects to ensure that good quality evaluation plans are in place to meet our need for information and to provide a basis for deciding how similar requests should be dealt with in future and whether more general legislative change would be a good thing.
It may not always be appropriate to require the provision to be in place before a project has begun. In some cases, the development of the evaluation design may need to go hand in hand with the development of the pilot project itself. However, the guidance that I have placed in the Library of the House makes it absolutely clear that applicants will be required to develop an appropriate evaluation strategy. I hope that those reassurances are helpful to Members of the Committee.
Turning to Amendment No. 25, we have also said that the power will end after four years. At that point, we shall want to review the effectiveness of the power to innovate, and so will Parliament.
In addition to what I said in reply to the noble Lord, Lord Lucas, about the evaluation of projects, I want to make it clear to the noble Baroness, Lady Walmsley,
in relation to Amendment No. 25 that I agree that it is important to keep a public record of the use of the power. As I have said before, that is one of the reasons why it is important that the Secretary of State is involved in the process and can lay orders before Parliament. Her involvement ensures that, in every case where the power to innovate is used to disapply legislation, there will be a public record of exactly what has been disapplied, who the disapplication applies to and how long it will last.I believe that means that there will already be a full parliamentary and public record of the operation within the provisions of this chapter. However, I should like to consider carefully whether Amendment No. 25 or something similar should be introduced on Report. On that basis, I hope that the noble Baroness will not move her amendment.
Baroness Walmsley: I am very encouraged by the Minister's answer. I thank her and look forward to hearing what she has say on Report.
Lord Lucas: I am very grateful for that reply. It is encouraging to see the Department for Education and Skills at last taking research seriously. I hope that that will expand into other areas of its activities. However, I am grateful for what the noble Baroness said, and I beg leave to withdraw the amendment.
Amendment, by leave, withdrawn.
[Amendments Nos. 21 and 22 not moved.]
Lord Davies of Oldham: I beg to move that the House do now resume. In moving the Motion, I suggest that the Committee stage begin again not before 8.36 p.m.
Moved accordingly, and, on Question, Motion agreed to.
Parkinson's Disease
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".
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
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
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 10 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?
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