(13 years, 2 months ago)
Lords ChamberMy Lords, the Government recognise the very valuable contribution made by nurse specialists. It remains our view that local providers should have the freedom to determine their own workforce based on clinical need as they assess it. The commissioning consortia that will be in place subject to the passage of the Health and Social Care Bill and led by clinicians will recognise that nurse specialists have an essential role in improving outcomes and experiences for patients. That is part of the key to ensuring that these valuable posts remain in place.
Is the Minister aware that specialist nurses play an increasingly important role in the care not only of patients with MS but of patients with many other neurological diseases, including Parkinson’s disease and epilepsy? Is he aware also of recent reports to the effect that some such specialist nurses, even a few funded by charities, have been required by employing authorities to undertake general nursing care to the detriment of the specialist care that they should be offering such patients? Will he take action to prevent that?
My Lords, I am aware of those reports. We have received concerns from most, if not all, of the neurological patient groups, as the noble Lord mentioned. He might like to know, however, that to help trusts develop specialist nursing roles, the department published some time ago a guidance document, Long Term Neurological Conditions: A Good Practice Guide to the Development of the Multidisciplinary Team and the Value of the Specialist Nurse. That was created in conjunction with a number of healthcare charitable organisations. It outlines why services for neurological conditions are important, it shows the importance of those multidisciplinary teams, and it clarifies the contribution of specialist nurses.
(13 years, 2 months ago)
Lords ChamberThe Bill states that the prospective NHS commissioning board will have a duty to promote research and continuous improvement in the quality of care. As the noble Lord will know, that duty will be underpinned by the role of NICE, which will be tasked with producing quality standards that are informed by the latest innovations coming through from the research agenda.
My Lords, I am sure that all of us await with considerable interest the outcome of the review that was recently undertaken and its proposals relating to the changes proposed in the Health and Social Care Bill. May I take it that, in addition to the bodies which the noble Earl listed, the universities which train doctors and other healthcare professionals and provide facilities for research will be fully consulted because of the importance of the training of those professionals in the NHS?
The noble Lord is quite right. The vital importance of education and training is one of the four main themes of the listening exercise. We have received some very interesting and significant proposals from the academic sector which Professor Field will no doubt reflect in his conclusions.
(13 years, 3 months ago)
Lords ChamberMy Lords, I added my name to the first two of these amendments for a variety of reasons. Four or five years ago in a debate on the National Health Service in your Lordships’ House, I remarked that I had identified more than 40 organisations that had the right to inspect, assess and consider health service activities, and I defined those organisations as constituting an intolerable “quangocracy”. I believed that I was the first to create that neologism but since then others have claimed authorship. However, when I heard of the Government’s intention to embark upon a bonfire of the quangos, the two quangos that I would never have contemplated being the first to go on the bonfire were the Human Fertilisation and Embryology Authority and the Human Tissue Authority. In my opinion, each of them has fulfilled and continues to fulfil a vital function—vital for suffering humanity and vital for the pursuit of medical research—and I believe that the Government’s current proposals are likely to be damaging to both bodies and their functions.
Why do I say that? Perhaps I may go back. The Human Fertilisation and Embryology Authority was established by the Human Fertilisation and Embryology Bill based on a splendid report prepared under the chairmanship of my noble friend Lady Warnock. From the moment the authority was established, it required that any individuals wishing to work with human embryos up to 14 days after fertilisation would have to have a licence from the authority. In the first instance, that licence helped greatly to improve the treatment of infertility.
However, as time went by, the Act was amended and we went on to develop the pre-implantation diagnosis of genetic disease, allowing individuals carrying harmful genes which would produce in their offspring very harmful diseases to be studied so as to prevent diseases such as cystic fibrosis and Duchenne muscular dystrophy. Later still, amendments to the Act led to many other crucial developments. Further regulations made it possible to use spare embryonic material in in vitro fertilisation programmes to generate stem cells for the treatment of human disease, and that is slowly but surely becoming a reality. As my noble friend Lady Deech said, only recently the HFEA established an expert committee to examine the results of some highly fundamental world-leading research, carried out in my former university of Newcastle upon Tyne, using the technique of pro-nuclear transfer for the prevention of mitochondrial disease. I as a neurologist have seen and tried to help and treat patients with devastating mitochondrial diseases. This is a massive development which is likely to be of enormous value to humanity.
I agree that it is possible to consider the transfer of these research functions to other organisations but let me make one or two important points relating to that proposal. The Care Quality Commission has recently merged the Healthcare Commission, the Mental Health Commission and the social care commission. It has taken on a massive regulatory task. I cannot conceive of any mechanism by which that organisation, constituted as it is, could possibly fulfil the functions of the HFEA without creating within itself expert committees with the right kind of background and expertise to be able to assess the importance of the functions that it will be absorbing from the HFEA. If that is the case, why abolish the HFEA or merge it into a body that is certainly not constituted to carry out those particular functions?
Let me turn for a moment to the Human Tissue Authority. The Alder Hey scandal was a failing on the part of members of my profession. Everyone in the profession knows that when a post-mortem is carried out inspections of the organs that one sees at that examination cannot, except in most unusual circumstances, give you the full diagnostic picture or the information necessary to prove the cause of death, or give evidence that is likely to help in future research. To obtain that information it is necessary to remove the organs and to fix them in formalin. After they have been fixed you then take sections that are examined under the microscope which give you diagnostic information. Regrettably many pathologists took the view that when permission for a post-mortem was given, that gave them authority to retain the organs and they did not regularly seek permission to retain them. Now, of course, the Human Tissue Act makes it absolutely clear that the retention of organs after a post-mortem for examination and diagnostic purposes absolutely requires the permission of the next of kin of the individual who is undergoing a post-mortem examination.
Quite apart from that the HTA has major responsibilities on issues such as the transplantation of human organs. There are many sensitive issues, such as whether someone donating an organ should be in any way compensated, whether it is appropriate that it should come from blood relations or whether well-meaning individuals not related to the individual should be allowed to give an organ for transplant. These and many other issues fall to the remit of the HTA. I recall very well when we considered the Human Tissue Act in your Lordships’ House and in Grand Committee—it took hours and hours of consultation. The Bill as it came to us from the Commons contained several major defects. Those major defects would have hamstrung diagnostic purposes and been immensely damaging to the future of medical research—not least the constraints on the use of archive material which had been removed from patients years before and which were vital for research purposes.
Happily we were able to introduce some major amendments in your Lordships’ House to improve the Human Tissue Act and to establish the Human Tissue Authority. I remember very well, as I am sure will the noble Lord, Lord Jenkin, that several people in the research community and in the royal colleges said, “Thank God for the House of Lords”. That Act was improved and the Human Tissue Authority was given the appropriate regulations to enable it to fulfil its function.
If the process that the Government intend goes ahead, and if these bodies are merged with the Care Quality Commission, who will be responsible for licensing? Will they carry out inspections and have the authority, under the Human Fertilisation and Embryology Act, to withdraw recognition from people who are not fulfilling the terms of their licence?
(13 years, 4 months ago)
Lords ChamberMy Lords, various categories of patients are eligible for free sight tests. Free tests are available under the NHS to a large number of people, including people aged 60 and over, children under 16 and people on low incomes. As I mentioned, the uptake of sight tests is increasing, which shows that people are continuing to get good access to NHS eye care services; but as regards an extension of the numbers, that will of course depend on available funding.
My Lords, does the Minister accept that one of the commonest causes of progressive visual failure in the elderly is macular degeneration? There are two forms: the dry form is currently not amenable to treatment, although research suggests that one day it may be; but the wet form can in many cases be arrested by expensive injections. Is he aware that some PCTs are allowing that particular form of treatment to be given only to one eye, allowing the other eye to deteriorate? Does he not agree that that—if he will forgive the pun—is an unfortunate and short-sighted policy?
My Lords, the National Institute for Health and Clinical Excellence—NICE—has recommended treatment with Lucentis as a clinically effective and cost-effective use of NHS resources for patients with wet, age-related macular degeneration meeting specific clinical criteria. I am aware that, initially, the practice mentioned by the noble Lord was being reported, but I think that it is less true now. I will of course check whether what the noble Lord says continues to apply. I would just say that primary care trusts are legally required to make funding available to enable clinicians to prescribe Lucentis, which is the drug of choice for this, in line with guidance. The PCT allocations take account of expected growth in the drugs spending, including the impact of this type of technology.
(13 years, 5 months ago)
Lords ChamberWe expect that about 60 per cent of management and administrative staff currently employed in PCTs and strategic health authorities will transfer to the new GP consortia or the NHS commissioning board. Those are straight transfers. As for those who leave the service, we have included claw-back arrangements in the redundancy scheme so that, if any employee returns to work for the NHS in England within six months, they will be required to repay any unexpired element of their compensation.
Does the Minister accept that many members of the administrative staff of the NHS are acting as if the Bill were already in law? For instance, staff in the PCTs are melting away. It is crucially important that those who will be required to help to administer the GP consortia should be kept on. Equally, now that the Government accept that the NHS commissioning board will require some regional infrastructure to commission highly specialised services, what action are the Government taking to ensure that the experienced and dedicated staff involved in the regional strategic authorities who carry out those commissioning tasks will be kept on?
I am very grateful for the noble Lord’s question, because it gives me the opportunity to pay tribute to the skill and dedication of our managers and administrators in PCTs and strategic health authorities, whose skills we will most certainly need once the modernisation plans have been completed. We are clear that those who are able to provide these skills and can give us continuity into the new system are people we want to keep. We are encouraging them to stay and hope that they will. We are encouraging also the pathfinder consortia to engage with the PCTs to enable that to happen.
(13 years, 5 months ago)
Lords ChamberMy Lords, I have been looking with interest at the very helpful parliamentary briefing, particularly on the HFEA and the statutory functions that fall into four main groups. I am very concerned about each area. If licensing is to go into the Care Quality Commission, as has already been mentioned, will that commission have the same level of expertise to deal with the really difficult cases that may come up? I speak as a former judge who had a case where semen was put into the wrong eggs. Two families found that the non-white semen had been put into white eggs, and the children born to the white family were not white. It was the most appalling story. It caused grief to two families and, of course, to the twin children. It became public knowledge. It was a case that I tried. What is needed is careful regulation of the clinics and expertise in what the clinics are doing.
Another matter I would like to raise in particular with the Minister, and one which has not yet been raised in this evening’s debate, is the collection of data, the division of information, and the maintenance of a register. What is happening, according to the Government, is that the licensing and regulating will go to the Care Quality Commission but the provision of the information, the data collection, will go somewhere else.
What rather shocked me was the last paragraph of the helpful briefing saying that the arrangements for the transfer of the information-related functions will be based on assessments, and functions will be integrated into the most appropriate body. We do not know where the data functions will be going, which I find extremely disturbing. It leads me to the view that this plan to abolish both the HFEA and the HTA, whose functions are going to be divided, has not been given the sufficient thought or impact assessment one would have hoped for. We have not yet been given good reasons why these two functioning bodies should be got rid of.
I entirely support the wise words of the noble Lord, Lord Warner. It may very well be that each of these bodies could be streamlined, pared to the bone, have less back-up staff and cost less money. However, having asked in another debate on this Public Bodies Bill, “If something works, why break it?”, I say that these two organisations appear to work and so it is premature, at least, to be abolishing them now.
My Lords, when I came into this House almost 22 years ago, my baptism of fire was the consideration of the Human Fertilisation and Embryology Bill. I spent a great deal of time considering its provisions, based upon that splendid report produced by the noble Baroness, Lady Warnock.
The purpose of the Act, as it became, was to license experiments on the human embryo up to 14 days after fertilisation, first, for improvement of the management of infertility and, secondly, to help in the prevention of the birth of children with fatal and seriously damaging disease.
Those objectives were, very largely, fulfilled. We got to a stage of being able, through licences from the HFEA, to embark upon a programme of pre-implantation diagnosis of some of the severest diseases like cystic fibrosis and muscular dystrophy. It did a wonderful job.
It became quite clear, however, that, because of the developments in human embryology and the enormous advances in research, it was necessary that the Act should be further amended, not only in order to prevent the birth of people with severe diseases but also to be able to use human embryo material and the stem cells derived from it for the treatment of human disease. That resulted in a number of other amendments and regulations being introduced.
We then went even further with additional developments. As many in this House will know, one of the great developments recently under a licence from the HFEA has been the ability to prevent the birth of children—not yet feasible but on the verge of becoming so—with a devastating form of mitochondrial disease. I will not go into the scientific detail because it is extremely complex.
I mention the word complexity because I cannot conceive that the role and responsibility of the HFEA—I entirely agree that it is not perfect; it may be slimmed down, streamlined or modified—could possibly be carried out by the Care Quality Commission, which is, under its major new responsibilities, required to inspect hospitals, care homes, general practices and all bodies concerned with the supervision of health work of all kinds. To try to carry out those responsibilities under the Care Quality Commission is simply not feasible.
Last week, as the noble Earl will remember, we debated a Question on the role of the Academy of Medical Science’s report on the governance of medical research. I agree entirely with what the noble Lord, Lord Warner, said: this is a very exciting and important development, particularly in the conduct of clinical trials and the supervision of research in general. It certainly does not cover the responsibility which the HFEA is carrying out, and I therefore cannot accept the Government's proposals to put that body within the Care Quality Commission.
I move on to the HTA for a moment. When I was a medical student in the early 1940s, on the top floor of my medical school there was a museum which was full of organs held in formalin in plastic bottles. They were a wonderful teaching resource, because they were organs showing the signs of disease and, for the teaching of medical students, they fulfilled a major responsibility. No one had asked the patients involved before those organs were retained for teaching purposes.
The problem of the Alder Hey so-called scandal was that the permission of the individuals from whom the organs were removed had not been taken. What nobody recognised at the time was that if you were to carry out a post-mortem examination to try to determine the nature and causation of the disease from which the individual had died, there was no way in which the simple carrying out of the post mortem and visual inspection of the organs could give you the answer. The organs had to be removed; they had to be pickled in formalin; they had to be studied under the microscope, to give the answers which everyone wanted to know as the outcome of that post-mortem examination.
Where members of my profession were mistaken was that it became almost accepted by doctors, pathologists and clinicians that once permission for a post mortem had been given they could assume that permission had been granted to retain the organs for such an examination. They were wrong. Hence, the Human Tissue Authority was created to control that process. It has been very successful not only in that regard but also in issues related to the retention of tissues obtained for diagnostic purposes by biopsy. It has also been extremely successful in controlling the use of anatomical material for teaching purposes. It has fulfilled a whole series of other functions. My view is that it is so necessary that that function should be continued that I do not believe, for the same reasons, that the Care Quality Commission could feasibly absorb that task. It could do so only if it took on board the scientific experts on human fertilisation and embryology on the one hand, to deal with the responsibilities of the HFEA, and the scientific experts in pathology, anatomy, molecular biology and other branches of medicine, to look at the human tissue issues and also to be able to deal with issues relating to the donation of organs for transplantation. Those complex issues are so broad in their responsibility that I do not believe that the Care Quality Commission could conceivably handle them all. That is why I give warm support to the amendments.
My Lords, my reason for not pressing my case earlier was that I knew I was going to be out-gunned by the noble Lord, Lord Walton. He has demonstrated that conclusively, and I am certainly not going to try to compete with him. I ought in passing to declare an interest I had at the time of the passage of the Human Tissue Act: I was then chairman of the Royal Brompton and Harefield, a major transplant centre which clearly had an interest in this matter.
I ought to confess, in what is going to be a brief intervention, that I am getting to be rather worried about the number of occasions on which I find myself in some sympathy with the noble Lord, Lord Warner. He indicated earlier that he had hopes of enticing me to a different part of the Chamber, if I understood his remarks correctly—but his hopes will be frustrated. I want to make some simple remarks from what I call the coal face, as I am chair of another health trust in the mental health field, on the issue of the CQC. The CQC was asked to do a huge new task by the previous Government, and is doing it valiantly, not least in the mental health area that I know. However, it is struggling to fulfil in the originally intended timescale the jobs that were put upon it. I wonder whether the CQC actually wants yet more tasks, whatever the argument might be in an intellectual sense. Even if we agree in the end to go down this path, and that is some way ahead yet, I hope it will not be too quick and that the CQC will be in a position to digest the meals it is being asked to take in before being asked to consume them. As a specific question: does the CQC actually want this work?
(13 years, 5 months ago)
Lords ChamberWould the noble Earl accept that this country has had a very proud record in carrying out clinical trials, not least in the field of cancer; and that since the passage of the European directive on clinical trials, the problem of getting ethical approval for multi-centred trials—in a variety of different centres—has become immense? Is he aware of the recent report of the Academy of Medical Sciences, from a committee chaired by Sir Michael Rawlins, which has made a number of crucial recommendations? If accepted by the Government, those would make the performance of these trials very much easier.
My Lords, I am indeed aware of that excellent report. It is being studied with care in my department. We hope to make an announcement reasonably soon in response to it. It contains some extremely important recommendations which, if implemented, should do a great deal to restore the country's position as a destination of choice for clinical trials.
(13 years, 5 months ago)
Lords ChamberMy Lords, is the Minister aware that experts on liver disease such as Professor Sir Ian Gilmore in Liverpool and Professor Chris Day and Dr Chris Record in Newcastle have identified an alarming increase in the incidence of liver disease in young people? No doubt he has read the letter in the Times this morning from representatives of the drinks industry, who say that the total consumption of alcohol in this country has fallen by 11 per cent during the past two years. However, consumption by young people is steadily increasing. Can he think of any solution by which he can overcome the problem of proxy purchasing, whereby people above the minimum age buy alcohol in bulk and pass it on to young people, who are being damaged by this process?
My Lords, as ever, the noble Lord is absolutely right. Overall consumption of alcohol is going down, but we are seeing very alarming rates of consumption among certain groups of young people. As Sir Ian Gilmore has pointed out, liver disease is appearing among the young, which is extremely worrying. The Government are determined to grasp this issue. Public health policy generally is co-ordinated by a public health Cabinet sub-committee. It will work on an alcohol strategy, which we will publish in the summer in the wake of our White Paper on public health. There is no single solution to this problem. The issue of proxy purchases, which for alcohol, I believe, is already an offence, is difficult to police and enforce. However, the noble Lord is right that we need to focus on it in our strategy.
(13 years, 6 months ago)
Lords Chamber
To ask Her Majesty’s Government what steps they are taking to increase the proportion of multiple sclerosis patients who receive disease-modifying drugs.
My Lords, patients with multiple sclerosis can receive treatment with a number of disease-modifying drugs where their clinicians consider they will benefit. More than 12,000 have benefitted from such drugs through the risk-sharing scheme established in 2002. In addition, another drug, Tysabri, has subsequently been licensed for use in the NHS and recommended by the National Institute for Health and Clinical Excellence.
My Lords, I thank the noble Earl for that Answer. As he made clear, following the introduction of interferons in the past 20 years, a number of effective drugs have been introduced and have been shown by research to have a beneficial effect upon the course of the disease, particularly in the relapsing and remitting form of the condition. However, is he aware that in the UK only 12 per cent of patients with multiple sclerosis are at present receiving these drugs? A recent report from the Department of Health shows that, in that respect, this country stands 13th out of 14 comparator countries. Surely we can do better.
(13 years, 7 months ago)
Lords ChamberMy Lords, in speaking in this important debate I must first declare an interest as a vice-president of Parkinson’s UK, and as a neurologist who has looked after a great many people with Parkinson’s disease in the course of my professional career.
It was in 1817 that James Parkinson, a general practitioner in Hoxton in London, published an essay on the shaking palsy, describing a disease that had previously been known as “paralysis agitans”. As a result of that important essay, the disease eventually became known across the world as “Parkinson’s disease”. The pathology of the disease was well recognised many years ago, largely dependent upon the failure of nerve cells in a part of the brain stem called the substantia nigra. It was in the middle of the previous century that two Viennese pharmacologists discovered that the normal substantia nigra produced an important neurotransmitter called dopamine, and that when these cells degenerated, the dopamine declined. That ultimately resulted in the introduction of a drug, a precursor of dopamine called L-Dopa, or levodopa, which was of course a major development in the treatment of this condition. I had the privilege in the 1960s of conducting and supervising the first controlled trials of treatment in Parkinson’s disease conducted by the Medical Research Council in the UK.
Many new drugs have been developed since that time. Some of them are new precursors; some of them are what are known as dopamine agonists, trying to persuade the cell to produce more endogenous dopamine; and there are many others. The treatment has improved immensely. The side effects of the treatment, however, are substantial. One of the lessons that everyone looking after patients with Parkinson’s disease has learnt is that it is crucial to develop expertise in knowing how to handle that drug therapy—to adjust it according to the on-off periods that occur. This is a matter of great expertise, which is why Parkinson’s patients require the expertise of a well trained neurologist or, at the very least, a well trained geriatrician with neurological training. That is crucial.
There have been crucial developments in research. We now learn of the importance of the alpha-synuclein gene and we note that free radical scavengers play a part in the etiology of this disease. There has even been exciting work done in which foetal nigral neurones have been implanted into the brains of some patients, producing dopamine. The benefits have been substantial but the side effects are great, and more work will have to be done before these forms of treatment become a most effective part of the management of these patients.
I am grateful to the noble Baroness, Lady Gale, because it was a privilege to serve on this inquiry, which she expertly chaired, dealing with the management of patients with Parkinson’s disease and the range of services available across the country. I repeat the first point: neurological assessment and the proper handling of treatment and drug therapy are crucial. However, so too are the services provided by carers, physiotherapists, speech and language therapists, occupational therapists and others. There is no doubt whatever that to have a team of people looking after those with Parkinson’s disease, with a range of expertise, reduces the number of patients who are admitted to hospital for emergency care. That in turn is of great benefit to the National Health Service.
Sadly, though, as the report has demonstrated, the postcode lottery continues; it is alive and well. The range of services across the country is still desperately uneven. We have heard about the 2005 national service framework and the NICE guidelines that were published in 2006 to try to persuade health authorities across the country to provide a standardised range of services for people with Parkinson’s disease, but they have not been universally adhered to.
I have serious concerns about the proposed GP commissioning consortia. I talked to the Secretary of State who said that the specialised commissioning services for this and other neurological problems will be handled by the specialised health commissioning board. I cannot see that a single national board is going to be capable of dealing with all the complexities of the specialised neurological services that Parkinson’s and others require, and I do not see how it will work without some kind of continuing regional services for the commissioning of these services. Whatever the excellence of the general practitioners and the commissioning services of consortia that they produce, I do not believe that this will be adequate to meet the needs of patients with Parkinson’s disease.
It is right that the Government must take action to do what they can to produce uniform national standards of care. Under the health Bill, have the individual care packages and accounts that were proposed by the previous Government made any contribution in the care of patients with Parkinson’s disease? Are the Government taking account of the work of the neurological commissioning support service established by three major charities—the Motor Neurone Disease Association, Parkinson’s UK and the Multiple Sclerosis Society? This body has made several important and far-seeing proposals. It is very important that the Government should take account of its views.
These developments are things that people with Parkinson’s disease and their families deserve. I hope the Government will take full note of what has been said today. I thank again the noble Baroness, Lady Gale, for so expertly chairing this inquiry.