Health and Social Care Bill

Lord Turnberg Excerpts

Monday 27th February 2012 Lords Chamber

[Lord Winston]

My Lords, I hope that in summing up the Minister will address the general issue of genetic disease. The noble Lord, Lord Walton, referred to one specific single gene defect but there are some 6,000 single gene defects and they are often very complex. Most of them are fatal diseases and many of them affect children. A few sufferers of single gene defects live to a young age and some occasionally live into middle age. However, one problem that we already find in the health service is that provision for the care, treatment and diagnosis of these patients and for the counselling of their families is often very deficient, depending very much on whether funding is available.

An example is the work that has been going on in pre-implantation genetic diagnosis, which can prevent a child who might die from one of these diseases being born through the selection of a suitable embryo. Of course, this is not a cheap procedure but in terms of financial efficiency for the health service it is very much less expensive than the complex care that might be involved for a child with, for example, advanced male-type muscular dystrophy. Hitherto there has been a huge difficulty in getting these services through individual PCTs because they think in the short term and are on a budget from year to year. Therefore, collaboration seems extremely important not only in relation to these rare cancers, which of course are immensely important, but for a great number of diseases which are extremely distressing. I am sure that the Minister will fully understand and be greatly sympathetic to the fact that the families involved are immensely distressed by these diseases. They are often very puzzled that they may be carrying one of these gene defects and they find it very difficult to get answers to what are quite complex problems. There really does need to be proper provision for them through collaboration with other authorities.

[Lord Turnberg]

My Lords, I should like to comment on Amendment 64ZA. I am sorry to inflict yet another medical opinion on the House but there is one factor which has not been mentioned in the planning of emergency services—that is, the fact that the vast majority of patients in medical wards are admitted through the emergency department, coming in as acute emergencies. This is quite unlike the situation in surgical wards. They, too, have their ration of emergencies but the majority of patients are admitted from waiting lists, and this is where the waiting list initiative and so on come in. However, when planning for medical beds, one has to think in terms of the accident and emergency department being the major route by which these patients enter the hospital and, in planning for emergency services, one has to think of the bed needs associated with that.

[Baroness Masham of Ilton]

My Lords, I, too, support these amendments, being associated with the rarer cancers group and various other groups. I had a cousin who had neuroblastoma two years ago and had to go to America for treatment. Some of these problems are really complex and GPs have never seen them. However, in the longer term, it is a question of ongoing treatment and the complexity of getting the right drugs for the right condition. Sometimes these drugs do not even come before NICE because the conditions are so rare. This matter really does need serious consideration and I hope that the Minister will do his best.

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[Lord Turnberg]

My Lords, my name is attached to two amendments in the group, Amendments 57 and 99. I shall speak very briefly. They are both about ensuring that, first, the commissioning board can put itself in the best possible position to develop its plans by having available to it all the advice that it can get. When the board makes its decisions it has to be able to show and demonstrate that it has reached those decisions on the best evidence possible. That is what the amendment tries to do. The same argument, only even more so, can be applied to CCGs. That is Amendment 99. They will certainly need all the help that they can get, and Amendment 99 gives them the opportunity to get the support that they need. I hope that those two amendments can be supported, at least.

[Lord Warner]

My Lords, I have added my name to Amendment 66 from the noble Lord, Lord Patel. Given all the hard work that has gone into trying to improve knowledge about medical and other areas, to improve patient safety, it seems extraordinary that in this Bill there is a provision to enable the national Commissioning Board to be able to charge for information about patient safety defects that have come to its attention. That seems pretty bizarre, but no doubt there is some explanation in Richmond House that would convince me. I look forward eagerly to knowing what it is.

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[Lord Willis of Knaresborough]

My Lords, I am eager to speak at this late hour. It seems that every time we talk about research it is always around 11 o’clock at night. The Minister and his minions must be planning something which we do not quite know about, but here we are. I support Amendments 66AA and 67AA standing in the name of the noble Baroness, Lady Morgan of Drefelin. Will my noble friend the Minister clarify the issue over the head of research at NIMR? At an early stage on Report, he clarified the duties of the Secretary of State and the commissioning groups, and how they will be reported. I think that is quite clear to the House. Speaking on behalf of the medical research charities, one of which I chair, there is general agreement on and support for the Minister’s general direction of travel. However, the Commissioning Board is a different issue altogether. The Minister was silent on that when he reported back but he indicated that it would be the role of the chief executive of NIMR, Dame Sally Davies, to prepare plans and report back on research. However, my understanding is that Dame Sally Davies has two specific jobs. On the one hand, she is the chief executive of NIMR and is therefore responsible for funding research proposals that come to the Department of Health. That is a very distinct role of looking after more than £1 billion of spend in this particular direction.

Her other role is that of Chief Medical Officer. In that role, I understand that she is responsible for organising, on behalf of the Department of Health, research programmes that deal with both public health and those areas of the health programme that require specialist research input. The Minister appeared to say earlier on Report that Dame Sally Davies would, in her role as the head of NIMR, report to the board on research. However, perhaps she will not report to the board on research; perhaps she has a separate reporting line to the Secretary of State or Parliament. In that case, I should very much like the Minister to clarify that role.

In conclusion, I strongly support the arguments of the noble Baroness, Lady Morgan of Drefelin, in making her point about cherry picking duties. Earlier today, in response to Amendment 38A, moved by the noble Baroness, Lady Masham, the Minister rightly said that we should not cherry pick particular conditions in order to report on them. However, that is exactly what is happening over the duties. A specific set of duties, of which the whole House is incredibly supportive, are laid down in the Bill. However, only certain ones must be included in an annual plan and reported on. There can be no duty more important than that of research. It is the one area in which we will get the very latest treatments to patients quicker and with better health outcomes, yet it is one of the areas that is regarded as less important than others. I hope that the Minister will be able to satisfy both the medical research charities and this House on those two issues.

[Lord Turnberg]

I strongly support the amendments in the name of the noble Baroness, Lady Morgan, and the words of the noble Lord, Lord Willis. It is almost churlish to return to the matter of research when we have heard such welcome words and support from the noble Earl on research in the Bill. However, as an ex-chairman of the Public Health Laboratory Service, it would be wrong for me not to comment on Amendment 60A, which seeks to have research supported in the health service for the purpose of protecting the public in England. It is in that area that we may have a specific problem because public health will be dealt with largely by the local authorities. It is unclear how local authority support for research will be kept within the context of the needs of the country, and how that will work with the marvellous amendments that the noble Earl has tabled. Perhaps he will clarify how local authorities will be engaged in promoting research and how we will encourage them to do so.