Health and Social Care Bill

Lord Newton of Braintree Excerpts

Wednesday 29th February 2012 Lords Chamber

[Baroness Finlay of Llandaff]

My Lords, I also have an amendment in this group. For the convenience of the House, I have left it there because it concerns the clinical commissioning group’s function. On 27 February, the Minister rejected the amendment that I had tabled, which provided that the Commissioning Board must ascertain that clinical commissioning groups commission for less common conditions and that they collaborate.

Today is Rare Disease Day and my amendment specifically addresses rare diseases. In responding to me on 27 February, the Minister cited sources of advice that are available to patients, healthcare professionals and carers, specifically NHS Choices and NHS Evidence. I have been to their websites to find out how they inform commissioning for some of these rarer diseases. They are very helpful websites and they are a resource, but they are enormously complex. Trying to read across from one condition to another to put together a cohesive package for commissioning is very difficult. I am concerned that replicating this in lots of small clinical commissioning groups all around the country will be, in effect, a duplication of effort.

For some of these conditions there is no NICE guidance at all as yet. NICE does a fantastic job by producing the guidance that it does but it is not there for everything. The European Union’s recommendation of an action in the field of rare diseases has been published. The Minister informed us that there will shortly be a consultation on the Government’s response to that.

What are these conditions? They range across 5,000 to 8,000 different diseases, which occur at an incidence of less than five cases per 10,000 of the population. However, most of these people suffer from diseases that are so rare that they affect less than one person in 100,000 of the population.

The European Union recommends that member states should have plans and strategies in this field and adequate definition, codification and inventories of these diseases and research into them. It also recommends that member states should establish centres of expertise with a European reference network, gather expertise and empower patient organisations. These objectives are compatible with the amendments in the name of the noble Baroness, Lady Cumberlege. The European guidance also states that these services should be sustainable. However, given that the prevalence of these diseases is so low, it would not be cost-effective routinely to commission services in populations of fewer than 250,000.

These amendments are supported by more than 98 patient organisations, 70 of which are members of the Neurological Alliance. There is concern about the application of the appropriateness test to clinical commissioning groups. The biggest area in this context often relates to rehabilitation and aftercare and comprises people with severe anorexia and those who are rehabilitating after a severe head injury or major trauma or stroke and quadriplegia. An increasing number of survivors are coming back from our theatres of war who would previously have died of their injuries. They require complex rehabilitation. Sadly, there are already instances where some of these soldiers are not able to obtain the prosthetic support that they require and are having to raise funds themselves to obtain their prostheses, and some are going to the United States for this provision.

Some people may think that stroke is a common occurrence and therefore does not come into this category. However, some types of stroke are complex and occur infrequently in the population. Stroke comprises a very broad spectrum of diseases. Some of the rehabilitation and services required fall to local authorities to provide. There is concern about the extent to which the appropriateness test will be applied and where discretion will lie as regards these conditions. As I said, the clinical commissioning groups cover relatively small population areas and therefore it is not cost-effective for them to commission services for less common conditions. I am concerned that they will have no duty to collaborate with other clinical commissioning groups in commissioning services. One hopes that they will but there does not seem to be a requirement that they should. If commissioners lack adequate guidance on best practice in commissioning comprehensive and equitable services, they risk commissioning services which do not provide value for money and do not meet the needs of people with these less common conditions. The National Audit Office report on services for people with neurological conditions showed that there is a great need for improvement in service provision for this population, with significant variation in access to services and variation in quality in different areas. Even where there are localised examples of good practice, sometimes leadership is lacking on the outcomes analysis so these bodies are not able to disseminate their good practice for wider implementation.

The Bill certainly provides opportunities for collaboration between clinical commissioning groups, but not encouragement or incentives to do so, and these groups are left to determine when to co-operate. This amendment would provide an important indicator for clinical commissioning groups and would bridge the strategic gap between the commissioning that will be done centrally by the Commissioning Board and that which will be done at a local level. I give a very simple example of a neurology service involving someone with motor neurone disease who requires non-invasive ventilation. That service should be provided in patients’ homes or somewhere nearby. If it is not provided to a high standard, patients have a much higher chance of ending up as emergency admissions—in fact, this is almost inevitable—and the cost of that provision is three times that of providing adequate NIV services. It therefore becomes very cost-effective to ensure that there is appropriate commissioning for this group across the piece. The risk is that the disparity in service provision and outcomes will widen. I stress that the difficulty comes because these patients sit in the spectrum between what will be commissioned centrally by the Commissioning Board, what will fall to the clinical commissioning groups and, when patients get into long-term care and rehabilitation and being sustained at home, what will fall to the local authority—and that has not been made clear.

I will listen very carefully to the Minister’s response because this matter is so important that we may need to test the opinion of the House. I am hoping that I will get satisfactory answers from him and that these discrepancies will be clarified. If not, I ask him, if he is unable to provide adequate answers, to consider these issues at Third Reading.

[Lord Newton of Braintree]

My Lords, perhaps I may briefly intervene, although not in any way to differ from my noble friend Lady Williams of Crosby; I am much too diffident to dare to do that. In fact, I want to raise a few nitpicking points that occur to someone who has had a bit of ministerial experience over a fairly long period. They occur in relation to several of these amendments. First, it is far from clear, in light of the exchange with my noble friend Lord Mawhinney, just what “resident” means in this context. Someone needs to answer that clearly before we go down the path of the amendment. Secondly, on a related matter, does the proposal mean—whatever “resident” means—that people would be entitled to free NHS services, regardless of their status? Under existing law, a lot of people living in this country are liable to be charged for NHS services. That is not clear in some of these amendments.

In particular, it is not clear whether illegal immigrants are liable to be charged. I do not know the answer to that, and I probably ought to. If, however, they are liable, it is another factor to be taken into account when looking at what all this means. If we really mean that clinical commissioning groups must provide services—and I shall come back in a moment to the term “provide”, which also occurs in another of the amendments—to everyone resident in their area, how are the CCGs to establish that? Illegal immigrants, along with a number of other people, go to great lengths to stay beyond the radar. They will not be on the electoral register. They will not be registered with doctors. They will be trying to make sure that no one knows they are there. Do CCGs have to set up an immigrant police investigation team to find out who is resident in their area? These may sound like nitpicking points but they would be real issues if an amendment along these lines were passed, even though I am sympathetic to the aim. Parliamentary draftsmen would need to do some work.

What does “provided by” mean? Clinical commissioning groups will not provide many services; they are essentially commissioning groups. Do we mean “any services commissioned by” commissioning groups, many of which will involve secondary services—certainly—tertiary hospitals, and a whole range of other people? The amendment and several others in the group, however worthy their purpose, require a lot of careful drafting before we can accept them as amendments to an actual piece of legislation. My noble friend may care to comment on that.

Lastly, this rather curious group also includes the amendments of my noble friend Lady Cumberlege relating to HealthWatch England. I cannot see any problem with them. I support her entirely. It seems to be a no-brainer that if we are to set up a healthwatch system, people should have to take account of what their local healthwatches have to say.

[The Earl of Sandwich]

My Lords, before the noble Lord sits down, may I correct him on the question of illegal immigrants? There is no question of illegal immigrants having access to the health service. Certain vulnerable categories, such as mothers and children and so forth, are given access, but it is quite wrong to suggest that that is what is generally happening.

--- Later in debate ---

[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.

[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.