Health and Social Care Bill

Lord Harris of Haringey Excerpts

Wednesday 29th February 2012 Lords Chamber

[Lord Harris of Haringey]

My Lords, the intervention we have just heard raises a particular point about the position of illegal immigrants. There is a problem here. The number of people who are not here legally varies in different areas. There are concentrations in particular areas where the impact on local health services will be disproportionately high. A simple assumption that this could be lost in the wash does not work. That issue needs to be addressed.

This is a pot-pourri of amendments. Amendment 75 raises an extremely important point, which I hope that we can include in the Bill in some form. The very important Amendment 96, in the name of the noble Baroness, Lady Finlay, raises a completely different set of points.

I want to pick up on Amendments 95 and 111 in the name of the noble Baroness, Lady Cumberlege, and, in particular, the points she made about why she introduced the amendments in this form on the basis of conversations that she had with the government Front Bench and, in particular, the noble Baroness, Lady Northover. She had been led to believe that this would be too burdensome a task for local healthwatch organisations and that they would be too small to carry out the functions that she talked about.

[Baroness Cumberlege]

That was not in a private conversation; it came out in Committee and was open to everyone who attended that sitting.

[Lord Harris of Haringey]

That does not alter the point I was about to make, which is that, on the basis of those remarks, it is important to recognise in the Bill that that is the expectation on local healthwatch organisations. That reflects the growing concern of people outside that, despite the Government’s best intentions for how healthwatch will be organised, those organisations will not be anything like as effective as your Lordships would hope. We hear, for example, that there is widespread concern that the Government will remove the statutory nature of local healthwatch organisations—we will no doubt come to that in due course. We are told that the Government are indifferent to the consequence of not ring-fencing their finances. The concerns expressed by the noble Baroness, Lady Northover, in Committee, that those organisations may be too small and unable to cope with some of these loads are real. Therefore, it is all the more important not only that we provide a framework which enables healthwatch organisations to be effective but that we make clear in the rest of the legislation the importance of giving a clear statutory role to healthwatch organisations—in particular, in the vital role of commissioning local services.

[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.

[Baroness Murphy]

My Lords, I quake to disagree with my noble friends Lord Walton and Lady Finlay about Amendment 96 but I do so as someone who has been the chief executive of a very large health commissioning organisation. It is utterly crucial that rare conditions are considered individually and that the level at which they are commissioned is decided by the national Commissioning Board coming together with the clinical senates and the clinicians involved in the area. They are best placed to decide on the best level of commissioning based on epidemiology and public health expertise. In fact, this amendment would achieve the very opposite of what the noble Baroness, Lady Finlay, wanted: to highlight some of these very important rare conditions which we do not want to forget. It is not helpful, however, to have rare conditions identified in this form in the Bill. We must leave it to the clinicians to make a judgment about how they are commissioned in groups. That will protect patients better, in my view, than any statutory guidance of this kind. I hope she will reconsider and not press this amendment.

[Lord Harris of Haringey]

The noble Baroness is not only disagreeing with the noble Baroness, Lady Finlay, and the noble Lord, Lord Walton, but disagreeing with all the organisations associated with these particular rare diseases. They think that the way forward is in the amendment of the noble Baroness, Lady Finlay.

[Baroness Murphy]

I will respond briefly to that. We all have tremendous sympathy with the fact that very many rare conditions are not currently commissioned to the standard that we would wish. It is also true, by the way, that many ordinary conditions are not commissioned to the standard of service across health and social care which we think would be best for the patients. That is undoubtedly true, but we would not necessarily fix that by having a special focus on the way we say where it is going to be commissioned. What we need are specialists in each of those rare conditions’ groups to be consulted, to ask patients and their relatives about how they should be commissioned, and some professional advice about the epidemiology of it.

Noble Lords should remember that the national Commissioning Board has the ability in this Bill to use, for example, the good offices of their local offices that will regionally be able to ensure that clinical commissioning groups can come together to commission properly for rare conditions. That is already happening around the country, and that is more likely to be a way forward than this particular statutory amendment. I am not saying that those rare conditions do not need some focus and better commissioning: they certainly do.