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With this in mind, one option that we are actively considering, and have already discussed with the noble Lord, Lord Morris, is that together with the devolved Administrations we could build on the existing UK-wide partnership in the Haemophilia Alliance between patients, haemophilia doctors and others involved in their care, such as nurses, physiotherapists and social workers. The alliance is jointly chaired by the Haemophilia Society. We are considering a formal arrangement whereby the Government would seek advice from the alliance on matters relating specifically to the care of haemophilia patients, and meet with them at least twice a year. If this were pursued, we would, of course, meet the costs of these meetings. The Haemophilia Alliance has already established a commendable reputation by developing a national service specification for bleeding disorders, which has been welcomed by commissioners.
I assure noble Lords that my right honourable friend the Secretary of State is looking at the most appropriate means of strengthening representation for haemophilia patients and ensuring that advice is provided to those best placed to act on it for the benefit of patients. This is being considered together with the other recommendations from the noble and learned Lord, Lord Archer, for improving support more widely to the haemophilia community. I personally commit to do everything possible to ensure that the Government respond fully to the noble and learned Lord’s recommendations in advance of the Whitsun Recess, if not the week before. Furthermore, we will of course assist as far as possible in securing a debate on the Government’s response.
Finally, I turn to two points made by the noble Lord, Lord Morris, on CJD. First, since the announcement of the finding of the case, much careful work has been undertaken to ascertain the possible source of this infection. The information will be considered by the CJD incident panel, which will advise if further action is necessary. I remind the House that we have implemented many precautionary measures to reduce the risk as far as is practical and continue to monitor this area very closely. Secondly, on Crown immunity, I reassure my noble friend that the position is very different from what it was 20 or 30 years ago, but I am more than happy to look at what Crown immunity was 30 years ago and respond, giving the changes that have occurred since then.
I hope that the noble Lord will feel reassured by the steps that have been taken to consider the most appropriate way in which to involve those affected by haemophilia in decision-making and feel able to withdraw his amendment.
Lord Morris of Manchester: My Lords, I think it was Aristotle—if not it ought to have been—who said that it is the essence of probability that some improbable things will happen. How could I possibly have suspected that my first duty now would be for me to thank the noble Earl, Lord Howe, for speaking so eloquently and with such attention to accuracy in responding to the noble Baroness, Lady Howarth? As he explained, I was simply taking the first opportunity to raise again an issue that noble Lords in all parts of the House see as one of priority and very considerable importance to the future of the National Health Service. The pledges
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Earl Howe: My Lords, in moving this amendment, I realise that I run the risk of crossfire from other noble Lords for seeking to add to the list in subsection (2). I am looking in particular at the noble Baroness, Lady Howarth, but luckily she is not paying attention. I am prepared to accept the risk because, when we debated the NHS Constitution in Grand Committee, I drew the Committee’s attention to a remarkable omission, which is that nowhere in the constitution is there even a mention of specialised services. This seems to me quite extraordinary and I thought that we ought to return to the subject today.
It might be helpful if I were just to outline the way in which specialised services are commissioned in the NHS. What happens is that within each strategic health authority area, PCTs delegate responsibility for commissioning these services to specialised commissioning groups. In so doing, they pool their commissioning budgets. The point of doing that is to share risk and to ensure that the care that is delivered is of high quality. We are talking here about a very considerable range of conditions; for example, cystic fibrosis, complex disability, haemophilia, HIV, various neurological conditions and certain types of cancer. Serious burn injuries and spinal injuries also fall within the category of specialised conditions for the purposes of the national definition set.
Collectively the services involved account for 10 per cent of NHS expenditure and the treatment of hundreds of thousands of patients. The handbook to the constitution mentions these services only in passing. A short paragraph on page 15 talks about,
From his reply in Grand Committee, I rather took it that the Minister privately agreed with me that this was inadequate recognition of a category of services which he himself referred to as being the “jewel in the crown”.
However, these services are important in another sense. We have to remember that the way in which the NHS commissions specialised services involves a diverse range of providers, many of them from the independent sector. That fact places even greater weight on the need for commissioning arrangements to maintain the standard of the services that are delivered, and, over time, to enhance them. Against that background, it is surely of great importance that the bodies required to have regard to the NHS Constitution should include specialised commissioning groups.
I understand that the PCTs participating in the specialised commissioning groups remain the statutory bodies, and the Minister may well say that my amendment
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I hope the Minister will be able to give me a reassuring reply on this matter, which I do regard as significant, and I beg to move.
Lord Walton of Detchant: My Lords, this is an important amendment. The reason that I think it is important rests on my knowledge of specialised commissioning services across a large range of different activities in the NHS, not least in my specialty of neurology.
I am at present serving on two inquiries being conducted by All-Party Groups. One is on Parkinson’s disease; the other is on muscular dystrophy. We have taken a great deal of evidence already on services for patients with Parkinsonism, and have found, not greatly to my surprise, that there is a remarkable unevenness of resources and facilities for patients in different parts of the country, in relation to their medical care and also to the availability of specialist nurses, specialist physiotherapists and specialists in language and speech therapy.
In the case of muscular dystrophy and other neuromuscular diseases, the situation is substantially worse. My own research, many years ago, was based in Newcastle-upon-Tyne. I will give you a perfect example of what I am talking about. The most severe form of muscular dystrophy, the Duchenne type, affects young boys who have difficulty in walking and who, by the time that they are eight, nine or 10 years of age, are often confined to a wheelchair. When I started working in this field, many of them died in their early teens from complications such as heart failure or pneumonia. In the unit in Newcastle with which I am now very familiar, the range of services, including physiotherapy, treatment of contractures, prevention of deformities, respiratory care and specialised support for cardiac complications, has meant that the average age of death of boys in that unit, and indeed in other specialised units in Oxford, London and other parts of the country, is 31 or 32 years of age. I even know of one patient who is 41 years of age—admittedly on assisted respiration, but living a useful life. However, in certain parts of the country, and in one region in particular, a survey has shown that the average age of death of those patients is still 18 years of age. The standard of care is grossly uneven throughout the country.
The principles set out in the NHS Constitution are outstandingly good, but it is crucial that those responsible for commissioning specialist services should be in a position to take account of the crucial differences that already exist in services in different parts of the country. For that reason, this is a very important amendment that I warmly support.
Baroness Murphy: My Lords, I cannot help but be sympathetic to the amendment of the noble Earl, Lord Howe, and recognise the points that have been made by my noble friend Lord Walton. However, this seems to me to come down to the matter raised by the noble Earl about who is ultimately responsible for
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Baroness Finlay of Llandaff: My Lords, I would like to provide a contrast by strongly supporting the amendment. It neatly provides the device that I was looking for the last time I spoke. If we do not have specialised commissioning groups flagged up centrally, that would suggest that they are not absolutely core to the delivery of services for patients with rare and complex conditions, some of which may have arisen through mishaps. Different groups will need specialised services commissioned for them. It would seem extremely sensible to have them in the group, because the way that the provision is worded would leave it quite open for the different specialised commissioning groups as they evolve. We should also consider the collateral effect of not having this added to the list as advocated by the noble Earl, Lord Howe.
Baroness Tonge: My Lords, lists always worry me terribly, because when you have completed one you always think of something that should have been on it. I want to pose a question to the Minister before he replies: is there any group working directly or indirectly for the National Health Service that would not need to have regard to the constitution? Is there any need for a list, because it surely goes without saying that they should have regard to the constitution?
Lord Darzi of Denham: My Lords, first, I declare an interest. I work in two NHS organisations that provide specialised services commissioned by specialist commissioners. I am sympathetic to the amendment and I understand why the noble Earl is seeking to ensure that we do not lose sight of specialised services. The NHS Constitution and the duty to have regard to it apply to specialised services as much as any other kind of NHS service, as adequately described by the noble Baroness, Lady Tonge. The Government remain committed more broadly to the collaborative commissioning functions of specialised commissioning groups, spending about £5 billion of the NHS budget every year on such services.
However, as pointed out by the noble Baroness, Lady Murphy, the amendment is not necessary, because it does not address the issue raised by noble Lords in this Chamber. Noble Lords passionately believe that we have a strong history of providing excellence when it comes to specialised services. I agree with them. The noble Lord, Lord Walton, gave one example and there are many examples of excellence across the country. We need to ensure that we have the adequate support and funding to continue to provide excellence in such services. But I do not believe that the amendment addresses that. It creates a regard by the specialist
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I hope that I have reassured the House that the amendment is not necessary. I support noble Lords who made a strong case for why the NHS needs to look at commissioning functions in greater detail. I hope that in High Quality Care For All we made a strong case for specialist providers—there are many in London and outside—and why such services should be supported and funded.
We also acknowledge that in these cases we also need specialist commissioners with the expertise in commissioning such services. I hope that I have reassured the noble Earl that specialist commissioners have not been overlooked and that he feels able to withdraw his amendment.
Earl Howe: My Lords, this has been a useful debate. Of course, I understand the point made by the noble Baroness, Lady Murphy, which in part I foreshadowed in my own remarks.
I would say to the noble Baroness, Lady Tonge, that it is as much the ability to be consulted on revisions to the constitution as the duty to have regard to it that prompted me to include specialised commissioning groups in this part of the Bill. As she will remember, Clause 3(5) refers to those bodies and groups of people who will be consulted when the constitution is revised. It was that ability to respond to this important constitution that I felt would have maintained the profile of specialised services.
The Minister's reply was slightly disappointing although not wholly unexpected as regards the appropriateness of this particular amendment. However, I took some comfort from the general tenor of what he said. He of all people will understand what is at stake here. We cannot afford a situation where the profile of specialised services and the priority that is attached to them are allowed to suffer. It would be particularly helpful to hear, either now or outside this Chamber, that there will at least be a separate assurance scheme for specialised commissioning groups within the world-class commissioning programme. If we had that comfort, my mind would be considerably eased on this issue. For now, I beg leave to withdraw the amendment.
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6: Clause 2, page 2, line 11, at end insert—
“(h) bodies concerned with the education of health professionals;
(i) bodies concerned with the support and delivery of medical and scientific research”
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Lord Walton of Detchant: My Lords, my noble friends and I have tabled this amendment for several important reasons. It is true that if one looks at the NHS Constitution, in Part 1 on the principles that guide the NHS, item 3 says that:
“The NHS aspires to the highest standards of excellence and professionalism—in the provision of high-quality care that is safe, effective and focused on patient experience; in the planning and delivery of the clinical and other services it provides; in the people it employs and the education, training and development they receive; in the leadership and management of its organisations; and through its commitment to innovation and to the promotion and conduct of research to improve the current and future health and care of the population”.
Education and training are mentioned; so, too, is research. But people who work in the universities and medical schools who are involved in the education and training of all healthcare professionals—doctors, nurses and other members of the healthcare team—have expressed to me and others concern that not more is said about the crucial importance of the education and training of these individuals and of the necessity that the NHS should take full account of the needs of such education and training.
Equally, bodies concerned with research such as the Medical Research Council and the Association of Medical Research Charities have felt that the NHS Constitution, which contains a number of very admirable principles, pays less than adequate tribute to the importance of research. As I have said often—and I know that the noble Lord, Lord Darzi, would agree with me—today's discovery in basic medical and scientific research brings tomorrow's practical development in patient care. There is no doubt that such research is one of the life-bloods of medicine in the UK and one of the great virtues of the National Health Service, which is something that does not exist in many other countries. Because of the nature of its organisation, it provides a wonderful situation for the conduct of clinical trials of new developments in medicine and in other branches of medical science.
It is very important that full account should be taken of the needs of education, training and research and more needs to be said. I accept the strictures that have been expressed by a number of noble Lords about lists and it is true that if one looks at this particular amendment one’s first reaction on reading,
is that yes, of course they must. But equally, it is important that the NHS as an organisation should take full account of the needs of the education of health professionals in all of their branches and the need to support the circumstances in which medical and scientific research can be carried out.
I will also speak briefly to Amendment 34, which is grouped with this amendment because it relates to the section in the Bill relating to prizes for innovation in the National Health Service. As the Bill currently stands, that clause refers to prizes for innovation. Innovation could be innovation in the design of new
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I am deeply grateful to the Minister for the letter he wrote to me expressing his feeling that perhaps there is already enough in the constitution to meet my concerns. He said that the NHS takes full account of the importance of the education of all healthcare professionals; of the way in which healthcare is nurtured by the results of research; and of the way in which the environment is provided in which research can be conducted. I find his letter extremely reassuring, but I am still not certain that that reassurance is, in itself, enough. For that reason, I beg to move this amendment.
Lord Patel: My Lords, my name is attached to Amendments 6 and 34, and I support them both. My noble friend Lord Walton has articulated very clearly why these amendments are needed. I welcome the proposed innovation prizes, but recommend that the scope should be broadened to encourage the research that underpins innovation. I think these amendments are designed to do that. Innovation depends on research, and I know very well that the Minister is well aware of that in his own research and innovations.
It is important to recognise and reward the translation of basic and clinical research into innovative ideas and products that will improve healthcare. The NHS Constitution, in its principles, enshrines a commitment both to innovation and to the promotion of conducting research. During the previous debate, there was recognition of the need to develop a stronger culture in the NHS to support research and innovation. The Cooksey review, some years ago, examined the future of health research in the UK. It emphasised the importance of removing barriers to translational research and discussed the need for “pull” incentives to encourage demand for research leading to innovation. The review concluded that there should be proper rewards for translating research into innovation in health interventions.
The Cooksey review also highlighted concerns that the incentives for research to achieve an impact on health and health needs are not as strong as those to achieve academic excellence. Better incentives are needed to ensure that the best ideas are carried forward for patient benefit. Therefore, the criteria for the prizes should be developed to ensure they identify and reward early-stage research that has the potential to be transformative in an NHS setting.
During the Committee debate, my noble friend Lady Murphy raised concerns about the timeframe in which the success of an innovation is demonstrated. This was shown in a recent report, entitled Medical Research: what’s it worth?, that was commissioned and independently produced by the Academy of Medical Sciences, the Medical Research Council and the Wellcome Trust. It estimated that the time lag between research expenditure and eventual health benefits is around
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