Health and Social Care Bill

Debate between Lord Newton of Braintree and Lord Walton of Detchant

Wednesday 29th February 2012 Lords Chamber

[Lord Walton of Detchant]

My Lords, this is a disparate group of amendments. I shall speak in particular to Amendment 96, which has been so ably proposed by my noble friend Lady Finlay. I do not propose to redeploy the arguments that I expressed when a similar amendment was discussed recently. One thing that is beginning to emerge as the Bill continues its progress through your Lordships’ House is that the size and, perhaps, quality of the clinical commissioning groups will be extraordinarily variable. Some will be large and contain a large number of GPs, and so on; therefore, with the secondary care individuals who will become members of the group, and others, some will deploy a wide range of expertise.

However, it is perfectly clear that in some parts of the country the clinical commissioning groups are going to be very much smaller. The range of issues in highly specialised services will be very limited and the smaller clinical commissioning groups will lack the knowledge and expertise to handle those areas well. For that reason, it is crucial that the national Commissioning Board should have the major responsibility for commissioning highly specialised services, in which I include not only the neurological services, about which I spoke in some detail last week, but cardiological services, cardiothoracic services and many other specialties.

On Rare Disease Day, the point that my noble friend Lady Finlay made about rare diseases is very important. There are thousands of rare diseases affecting a very small number of patients throughout the UK. The Rare Disease UK consortium, chaired by Dr Alastair Kent, the former chairman of the Genetic Interest Group, is deeply concerned, as is the Neurological Alliance, about the mechanism by which these diseases will be given attention in this legislation and proper understanding, control and attention by the national Commissioning Board. As my noble friend said, there are several thousand rare diseases, some affecting very small numbers and some larger numbers.

I spoke in detail last week about muscular dystrophy. As an example, last week I was asked by a former medical colleague in Newcastle to see, with him, a patient—not as a consultation but to look at the problem posed by a condition called haemolytic uraemic syndrome. This is due to a genetically determined disorder of the complement system. It is a disease that affects the kidneys, is steadily progressive and is ultimately fatal. However, recent research has identified and produced a licensed medicine which is effective and which in the patient whom I met, with her husband, has proved to be virtually life-saving. The problem is that there are only 200 patients in the UK with this disease and the cost of the medicine for that patient is £250,000 a year. At the moment, it is paid for by the drug company, which is carrying out trials.

That is one example but there is a huge number of genetically determined rare diseases for which new drugs are coming on stream. There are many cases where the causal, abnormal or missing gene product has been identified and where, slowly but surely, drugs which are beginning to have a beneficial effect on these progressive, disabling or ultimately fatal diseases are beginning to emerge. These are called orphan or ultra-orphan drugs. Whatever happens in the future with the National Health Service, the possibility—the probability—of having a special mechanism to deal with the needs of people with these rare diseases, as well as the needs relating to the orphan and ultra-orphan drugs, is going to be a massive problem. It is crucial that there is a very clear indication in the Bill that rare diseases deserve special consideration. For that reason, I warmly support Amendment 96, which has been proposed so ably by my noble friend Lady Finlay.

[Lord Newton of Braintree]

Perhaps the noble Lord could comment on one specific point. In my experience, the biggest problem in respect of these rare diseases is not providing the services—although that can be a problem—but the fact that they are not identified in the first place because no doctor has ever seen one before. Identification is at least as big a problem as treatment but that is not addressed in this amendment.

Welfare Reform Bill

Debate between Lord Newton of Braintree and Lord Walton of Detchant

Tuesday 14th February 2012 Lords Chamber

[Lord Walton of Detchant]

My Lords, I had not intended to contribute to this debate, but I wish to speak briefly. As a neurologist with a long experience of caring for children with many forms of disability, I am fully aware of one important issue: that the nature of the disability may be relatively non-progressive—for example, in patients with cerebral palsy. The needs of children with cerebral palsy vary and change as they grow older. The problems faced by their carers—often a single parent, or both parents—become more demanding as the child grows older and is heavier and more difficult to manipulate.

As the noble Baroness, Lady Thomas, said, think again about patients with muscular dystrophy of the most severe kind. Boys with Duchenne muscular dystrophy, by the time they are seven, eight or nine years of age, are still mobile and still go to a normal school but walk with increasing difficulty. By the time they are 10 or 11, they are often confined to a wheelchair. In past years, many of those boys died in their teens. Nowadays, with vastly improved care, with improvement in their respiratory support and so on, they pass through that period of transition from childhood into adulthood, where their disability is greater and more demanding. Unless they are given proper support by carers and the support that they need in terms of respiratory support and suchlike, the demands on their parents become much greater. Furthermore, it is important to recognise that proper care and support in the home prevents a large number of emergency admissions to hospital, with major burdens on the National Health Service.

I was reassured at the beginning by what the Minister said. Can he assure us that the actual mechanisms of these three grades of support, and that important change from childhood into adulthood, are properly met by the provisions of this Bill? Will he also assure us that the recognition that disability is not static and that demands on the carers vary is fully taken account of in the decisions that are being made?

[Lord Newton of Braintree]

My Lords, I had not intended to intervene either. I will do so very briefly because I have made my points at earlier stages of the Bill. My principal point, as I said to the noble Baroness, Lady Meacher, at the end of last week, was that I did not expect to be able to vote for her amendment because, while I thought that the cause was good, writing this kind of thing into primary legislation was not. That is reinforced by the points that have just been made. I see the noble Lord, Lord Walton, nodding; I am not sure that the noble Baroness, Lady Hollis, will be nodding. The very point that the degree of disability does not directly relate to the costs incurred is actually a point of not trying to write all this stuff in concrete into primary legislation, together with the variability to which the noble Lord, Lord Walton, has referred. So I very much hope that the noble Baroness will not press her amendment to a Division, even though I strongly support the general aim that she has in mind. I want to pay my own tribute to the part that she has played in focusing on this issue.

Welfare Reform Bill

Debate between Lord Newton of Braintree and Lord Walton of Detchant

Tuesday 31st January 2012 Lords Chamber

[Lord Walton of Detchant]

My Lords, I, too, wish to speak relatively briefly to this important amendment. In the course of my neurological training and in my career, I spent some time assessing children with cerebral palsy who attended the excellent Percy Hedley centre in Newcastle upon Tyne and received outstanding treatment. However, when I saw the varying degrees of disability produced by this group of conditions—a group of immense variability—and saw the effect that the condition of these children had on their families, sometimes leading to family breakdown, as the noble Baroness, Lady Browning, said, I became increasingly concerned about the evidence of the disability and the resultant poverty which developed in many of these families.

Some of my personal research was dealing with a progressive disease—Duchenne muscular dystrophy—where young boys born apparently normal would begin at about the age of three to have difficulty in walking. They then began to have problems with falling frequently and getting up from the floor, and progressively became increasingly disabled so that many of them were taken to a wheelchair by the time that they were aged 10. I saw the effect that this had when not just one but two boys might be affected in an individual family, and the problems faced by those parents were immense. I shall never forget one mother saying to me, “I see my son die a little every day”.

I am not talking just about static conditions such as cerebral palsy—although even in cerebral palsy as the child becomes older, the disability may remain neurologically non-progressive—but about the problems that begin to emerge over schooling and a whole series of other issues, which become increasingly important and increasingly matters for concern. I could go on about my personal experience in the field of neurology and paediatric neurology but I would simply say that this is a very worthwhile amendment, and one which deserves your Lordships' support.

[Lord Newton of Braintree]

My Lords, I wonder whether I might intervene briefly. I am in a slightly awkward position, and it may not surprise the House to know that I have been approached by all parties to this argument, either to say something on their side or to shut up. I am going to make a slightly ambivalent speech which will leave a lot depending on the Minister. I fully support the concerns that have been expressed by the noble Baroness, Lady Meacher, by my noble friends Lady Thomas of Winchester and Lady Browning, and by others. The Government need to listen to this and take heed, and come forward with proposals which address these concerns.

In the light of what I said last week, it will not surprise the House to know that I do not think that setting benefit rates or benefit relationships in concrete in primary legislation is sensible. I would prefer that we leave it for Ministers to decide in regulations, as the Bill provides, provided it is clear that they are going to put something sensible in those regulations and that we shall have a proper opportunity to scrutinise them. It will follow from that that I want a positive response from the Minister before deciding what I am going to do.

I will make one further point, which picks up on what the noble Lord, Lord Walton, was saying. The other thing that strikes me about setting things in concrete is that this is a world in which things change very fast, because of medical advances. He referred to Duchenne muscular dystrophy. I think I have more knowledge of cystic fibrosis, where the world has moved on hugely in the past 20 or 30 years—not least because of work done at the hospital of which I used to be chairman, the Royal Brompton—and that is happening all over the scene. Conditions that were immediately life-threatening or life-limiting at a very early age are now more treatable, and life is longer. Anything that ties us down to an inflexible framework for dealing with these problems is probably not the right way forward.

That, though, is simply a view that I express to the House. My fundamental point is that this is better dealt with in regulations, provided we can ensure that the Government will do that. I look forward to hearing what my noble friend has to say.

Health and Social Care Bill

Debate between Lord Newton of Braintree and Lord Walton of Detchant

Monday 19th December 2011 Lords Chamber

[Lord Walton of Detchant]

My Lords, I shall be brief because most of what I would hope to say has already been said by the noble Lord, Lord Hunt, by my noble friend Lady Meacher, and by the noble Baroness, Lady Pitkeathley. This Bill, in Clause 209, will abolish the General Social Care Council and place social worker and social care assistant regulation in the Health Professions Council, which is to be renamed the Health and Care Professions Council. This is highly undesirable for a profession that faces enormous challenges and which has only had its own regulator for just over two years. Is it possible for the Government to turn back from the brink? To take the regulation, education and performance standards of social workers and social care assistants—100,000 of them—into a body such as the Health Professions Council is likely to overload considerably the administrative procedures and activities of that council.

If this change is inevitable, the amendments that have been tabled by the noble Lord, Lord Hunt, and others are worthy of very serious consideration. They would give social care and social workers a very special and identifiable voice in the Health Professions Council. Is it really appropriate that this mass of social workers should be regulated by a body that already regulates art therapists, biomedical scientists, chiropodists, clinical scientists, dieticians, occupational therapists, physiotherapists, and many others—people who all work primarily in the health field? I quoted many of the bodies regulated by the Health Professions Council earlier today. It seems that putting the social care profession under this council is going to make it a very uncomfortable bedfellow.

I wholly appreciate the Government’s wish to have a bonfire of the quangos, and I understand why they wish to reduce the number of regulatory authorities, but there is no doubt that their last mechanism for doing this, when they brought together three major bodies and cumulated them into the Care Quality Commission, has been struggling to fulfil its responsibilities. It is functioning very effectively, but it has had a massive task in taking on all the additional responsibilities that have fallen to the Care Quality Commission since that merger. I fear that the same problems might well emerge in relation to this proposed merger, about which I therefore feel very uncertain and somewhat uncomfortable. I only wish that the Government felt able to think again.

[Lord Newton of Braintree]

My Lords, prompted only by the debate, I ask one simple question of my noble friend on the Front Bench. What assurance can she give me, in the light of the concerns that have been expressed, that this move will not end up with the same problems that we have had with the CQC, which was asked to take on too much, too fast, and proved incapable of doing it effectively?

Health and Social Care Bill

Debate between Lord Newton of Braintree and Lord Walton of Detchant

Monday 5th December 2011 Lords Chamber

[Lord Walton of Detchant]

My Lords, I shall speak briefly to Amendments 236AA and 236AAA. As I listened to the noble Lord, Lord Warner, I reflected upon the fact that in the course of my professional career I have been a member of four hospital management committees, an area health authority for teaching, a regional hospital board and a regional health authority. Each one of these had its merits and defects.

On reading them and understanding the intention underlying them, these amendments look absolutely praiseworthy. I do not believe that they would have been necessary if the Government had been clear in what they intend to do about the subnational outreach of the national Commissioning Board. This has been promised to us by the Government and by Sir David Nicholson. It is intended to deal in every respect with the specialised commissioning of highly specialised services with regard to long-term conditions and with the issue, raised in many debates in the course of the last week or two, of the rising problem of rare diseases and their management and the new means of treatment that are being introduced.

Having said that, we hear that the Government are going to have clinical senates at a subnational level. It is intended that at these clinical senates there will be subnational outreaches of the national Commissioning Board that will fulfil the functions set out in Amendment 236AA. If that is right, my concern about supporting Amendment 236AA is that it looks as though it carries the potential danger of introducing yet another tier of management within the NHS. I look back with horror as I remember Keith Joseph’s reorganisation of the NHS in 1974. I was heavily involved at the time as the dean of a medical school. It created regional health authorities, area health authorities and district health authorities. The tiers of management were impossible and the decision-making machinery congealed.

I am very anxious that we do not go down that route. If we could have clarity from the Government about the subnational senates and the outreach organisations of the national Commissioning Board, Amendment 236AA would not be needed and would have the potential danger to which I have referred.

I agree with every word my noble friend Lady Finlay said about the role of the postgraduate medical and dental deans. As I said at Second Reading, and later, it is the financial responsibility of the NHS to provide education and training for all healthcare professionals and to provide training for young doctors and dentists who are being trained for specialities in various branches of the profession. It is absolutely right that that authority and responsibility continue to be imposed upon the postgraduate deans, but surely the right place for them is not only in Health Education England but in these clinical senates—the outreach organisations of the national Commissioning Board to which I have referred. I hope that the Minister can give us assurances about this.

I would hate to say that this amendment, so ably proposed by my noble friend Lady Finlay, is in any sense weak. It is not—it is a strong amendment—but it might not be necessary in the light of the developments to which I have referred at the subnational senate level. I am concerned, too, that if it were accepted it might prejudice the Government’s acceptance and agreement, which the noble Earl gave us quite recently, to the effect that a major government amendment on education and training is to be tabled by him on Report, to which we very much look forward.

The principles underlying these amendments are excellent, but for the reasons that I have mentioned I would find it difficult to support them if they went to a vote.

[Lord Newton of Braintree]

My Lords, I will speak briefly. First, I remind the Committee that when I spoke on a related matter last week, as my noble friend Lord Mawhinney has reminded us, I indicated that I have an interest as my wife is a PCT non-executive. I wish to put that on the record again.

I rise in the same spirit of helpfulness as the noble Lord, Lord Warner, with whose every word I agreed—the Minister needs to know that. I am also conscious, as my noble friend Lord Mawhinney reminded me, of my hurt last week when I was accused of using extravagant language. I will try to do better—well, worse, perhaps—this time. I indicated at that time that when we got to these amendments I thought my noble friend Lord Mawhinney would leave no one in doubt about his views. He has not, and I have not got up in order to disagree with him.

I want to concentrate on two things: the constitutional issue and the conflict of interest issue. The constitutional issue is perhaps arguable, but if you take the view, as my noble friend did, that the Government have in effect—certainly this is how they present it—abolished PCTs before this Bill has even been passed, there is a real question mark. Perhaps it is no more than a question mark because they will say that they have not abolished PCTs and will not do so until an order in two or three years’ time, but that is how it feels, looks and is perceived on the ground, and your Lordships might like to bear that in mind.

Public Bodies Bill [HL]

Debate between Lord Newton of Braintree and Lord Walton of Detchant

Wednesday 9th March 2011 Lords Chamber

[Lord Walton of Detchant]

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.

[Lord Newton of Braintree]

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?