Health and Social Care Bill

Baroness Finlay of Llandaff Excerpts

Wednesday 29th February 2012 Lords Chamber

The amendment is also grouped with Amendment 111, which carries forward the logic of connecting the key evidence-gathering function of local healthwatch, including its enter and view reports, with commissioning by CCGs, as set out in Amendment 95. Just as the health and well-being board, with its strategic function rooted in the community to which it is democratically accountable, should be consulted about the commissioning plan for local people, so should local healthwatch. After all, it is the repository of views and experiences garnered from health services. Both perspectives are indispensable to making commissioning work well. I hope my noble friend will look kindly on this simple amendment, too.

[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.

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Very briefly, I will speak to the minor and technical government Amendment 92A, which would give CCGs the ability, when executing legal documents, which generally require the use of a seal, to authenticate the seal with the signature of an authorised individual or to use an authorised signature instead of a seal. The amendment also provides that where a document appears to have been duly executed or signed on the CCG’s behalf, this is to be accepted in evidence unless the contrary is proven. I hope noble Lords will support this amendment when I come to move it.

[Baroness Finlay of Llandaff]

Can the noble Lord clarify whether the guidance will also cover the commissioning of services that are currently going to fall within the responsibility of a local authority, at the interface between health and social care, for the long-term maintenance of patients with very severe disability?

I accept the Minister’s comments on this amendment and the onus on clinical commissioning groups, and those made by my noble friend Lady Murphy, that the commissioning board may be the central focal point, as was outlined in the amendment that was not accepted, Amendment 63A. However, my second question is whether the Minister would be prepared to meet me to see whether there is a need for a review of the wording to clarify completely that there are no gaps for these patients, who may be large in number but very disparate and heterogeneous, with a very broad range of views. In that event, perhaps we could return to the matter at the last point, at Third Reading.

There are two distinct questions there on which I would appreciate clarification.

[Earl Howe]

On the first question from the noble Baroness, we fully anticipate that NICE will provide quality standards and guidance on services commissioned by CCGs and local authorities jointly. Typically, those are the kinds of service that the noble Baroness has spoken of, some of them in relation to less common and more complex conditions. Therefore, the commissioning guidance would reflect the NICE advice, and I hope that I can reassure her on that point.

Of course, I am willing to meet the noble Baroness between now and Third Reading, although I am not necessarily giving her the green light to bring this amendment back at Third Reading. I have explained that the Bill adequately covers the points of concern. Furthermore, I think that the amendment is flawed. We can achieve what she seeks through provisions already in the Bill and those that are not in the Bill that I have described.

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[Lord Williamson of Horton]

My Lords, the amendment deals with the distressing and serious problem of addiction to certain prescription drugs and, as is specified in the text, the problem of withdrawal from those drugs, because when such efforts are made, on many occasions they unfortunately fail and result in other difficulties for the patient in question.

Without going into detail about what may happen to the amendment, I hope that the Minister will be able to confirm that there should be an appropriate priority for the services available to treat that distressing problem. I do not press the point more than that, but it would be useful if we could have that sort of assurance from the Dispatch Box. In particular, whether the Minister agrees with this or not, some of us believe that in the past the issue has been allowed to fall into the shadows. That is what has happened in practice. It has been neglected and people have suffered in consequence. Perhaps we are improving but we could improve more, and I hope that the Minister will give an encouraging reply about the appropriate priority that ought to be given to the problem.

[Baroness Finlay of Llandaff]

My Lords, this is a clear example of an iatrogenic condition, very often originating in primary care. When patients have presented with insomnia, instead of being taken through the more complex and time-consuming aspects of sleep hygiene and possibly talking therapies to discover the cause of their insomnia, a prescription has been given all too quickly and readily. If we are looking at responsibility falling back to clinicians in primary care, it seems inordinately sensible that the clinical commissioning group should consider its responsibility to provide support to patients who end up with an iatrogenic problem.

I can see that the Government may feel that this is a very specific amendment targeted at a very specific area, but the guidance that needs to go out to clinical commissioning groups on their responsibility for the behaviour of all those prescribing on their patch may well deal with some of the principles behind this amendment and ensure that the necessary services are provided to patients who, completely inadvertently, fall foul of taking the drugs that they were prescribed and as they were told to take them.

[Baroness Hollins]

My Lords, I pay tribute to the work of my noble friend Lord Sandwich, who has done so much to raise awareness of the often unmet needs of people whose addiction originated in a legal prescription. There is some progress in training doctors—for example, in undergraduate medical education with a new national curriculum on substance misuse. This guidance provides learning objectives on rational prescribing and iatrogenic addiction. The fact that such a curriculum is only just being introduced shows the need for the attention of clinical commissioning groups to be brought to this issue.

There seems to be a special responsibility on the National Health Service to provide better care for people affected by medical prescribing practice, and I hope that the Minister will be able to suggest how such a responsibility could be emphasised in the Bill.

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[Lord Turnberg]

My Lords, my name is attached to Amendments 121, 122 and 126. I will not repeat the wise and reasonable words of the noble Lord, Lord Patel, who presented the case for these amendments very well. As an honorary fellow of the faculty, I am privy to all its innumerable e-mails and newsletters which set out many of its concerns—and it has many, as I am sure the noble Baroness is aware. These amendments will go a little way to assuage some of those difficulties and they fit very well with the Government’s intentions.

The publication of the Department of Health’s document, Public Health in Local Government, on the role of the director of public health sets out well the intentions of the Government. They may not be strong enough but they are certainly entirely appropriate. Amendments 121 and 122 go some way to putting in the Bill the emphasis that the Government intend from their own document. I hope that the noble Baroness will see fit to accept these amendments.

Amendment 126 deals with the tricky business of disease outbreaks and the role of the director of public health. Again, the noble Lord, Lord Patel, emphasised with examples the sort of problems that can arise in a situation where responsibility for public health is with local authorities but is also with the health service. I am a former chairman of the Public Health Laboratory Service, which dealt with outbreaks of infections around the country and had a very strong co-ordinating role. For example, leaving aside the two examples mentioned by the noble Lord, Lord Patel, if you have an outbreak of food poisoning in two separate parts of the country, you do not know whether they are connected unless you are able to do the special tests—the special serology—that is done centrally and in a co-ordinated way between directors of public health.

What is unclear—Amendment 126 goes some way to help this—is that, in emphasising the need for the director of public health to work closely with Public Health England, the documents that have been produced are a little silent on the relationship that the directors of public health will have with Public Health England. That is a key interrelationship that has to be fostered. It should be much clearer. Perhaps this amendment does not do it far enough but at least it leads us in that direction.

Two other areas are not talked about in the document. There is a rather weak statement about the role of the local authority in ensuring continuing professional development and training and education. We have covered training and education in other amendments and the Government have been very helpful in that regard. Here we have a slightly different situation with the local authorities being responsible for the contracts for directors of public health and their staff. There is a role in education and training for them. How that will be achieved is not entirely clear; nor is it entirely clear how the local authorities will be encouraged to ensure that the directors of public health can undertake research, which is an important element.

The documents that the Government have produced make great play of words such as “innovation”, “leading the field” and “keeping ahead”. We cannot do that without research, so it is important that research comes in here somewhere. I hope that the Government will listen to this.

[Baroness Finlay of Llandaff]

My Lords, my name is attached to Amendments 121 and 126. I will not repeat the arguments that have already been laid out so clearly by my noble friend Lord Patel. However, as regards Amendment 126, in an emergency clear lines of communication are absolutely essential and must be worked out. Indeed, they must be tested before the event.

We do not need to think only about infections. We need to think about toxins, accidental or deliberate releases of all kinds of chemical substances, and all kinds of contamination that can be a threat to public health. When an emergency arises, the problem is that it is too late to work out those clear paths of communication and access to essential resources. Provision has to be made in national planning.

[Baroness Jolly]

My Lords, I support Amendments 124, 128 and 152, which are all on issues on which I spoke in Committee. They refer to guidance and I welcome the commitment of the Government to supply guidance to local authorities in these areas. Clearly, we have councils already setting up their shadow health and well-being boards. Local public health directors are already moving into place in the local authorities. In some cases, they are already there because they were a joint appointment with PCTs.

Given that Amendment 124 states:

“A local authority must have regard to any guidance given by the Secretary of State in relation to its director of public health”,

organisations which are setting up need to be clear about what is expected. Early guidance would be very welcome on the roles and responsibilities of the DPH in the new world. Is my noble friend able to give any indication when this guidance might be available?