Health: Cardiology

Lord Turnberg Excerpts

Wednesday 6th March 2013 Lords Chamber

[Earl Howe]

My Lords, I pay tribute to the Oliver King Foundation for its work, as indeed I do to Cardiac Risk in the Young, which for many years has been campaigning very tellingly and successfully in this area. I think that my initial Answer should have satisfied my noble friend on the screening question, because that is now being reviewed by the screening committee. Regarding defibrillators, we have to look at the need to improve survival rates in the most effective way. I understand that the majority of these deaths—possibly as many as 80%—occur in the home. While we agree that the wider availability of defibrillators could save additional lives, CPR skills—cardiopulmonary resuscitation—should save more lives. To that end, the outcomes strategy says that my department will work with the Resuscitation Council, the British Heart Foundation and others to increase the number of people who are trained in CPR.

[Lord Turnberg]

My Lords, will the noble Earl encourage all schools to incorporate training in CPR for all schoolchildren? A skill learnt there will carry on through the rest of a child’s life.

[Earl Howe]

My Lords, the noble Lord makes a very good point. Again, as the CVD outcomes strategy sets out, basic life-support skills could be more widely taught as part of volunteering programmes; for example, in schools and the workplace. I am aware that bystander CPR doubles survival rates yet is attempted in only 20% to 30% of cases. There is scope for all emergency service personnel to be trained in CPR, and for basic life-support skills to be taught more widely.

Health: Healthcare Assistance

Lord Turnberg Excerpts

Wednesday 13th February 2013 Lords Chamber

[Earl Howe]

That story bears out the importance of employers fulfilling their responsibility to those who are in their care and ensuring that those whom they employ have the competences and skills that are required for the job. I do not want to prejudge that case, but there are systems in place that should ensure that patients are protected. We must deplore cases of this kind but they should not happen—safeguards are already in place.

[Lord Turnberg]

My Lords, many members of the public find it difficult to understand why healthcare support workers who deal with patients every day are not regulated and registered and do not have to be fully trained in order to take up a job. I, too, am puzzled. Will the Minister tell us whether it is purely a matter of finance?

[Earl Howe]

No, my Lords, it is not purely a matter of finance. Our view is that what really matters in this context is the competence and training of the individual involved. We are not oblivious to the concerns in this area. That is why we have already announced a number of further measures to support healthcare assistants. For example, we have just created an innovation fund of £13 million for the training and education of unregulated health professionals. The Care Quality Commission will undertake a review of inductions for care staff to make sure that nobody can provide unsupervised help without an appropriate level of training, and we have the work currently being done by Skills for Health and Skills for Care. Their report has now been received and embodies suggestions for a code of conduct and induction standards for health and social care workers.

Health: Medical Innovation

Lord Turnberg Excerpts

Wednesday 16th January 2013 Lords Chamber

[Lord Turnberg]

My Lords, it is clear that we are all enormously grateful to the noble Lord, Lord Saatchi, for introducing this very timely debate. It was impossible not to be moved by his remarkable personal story, and I respect and admire the motivation that lies behind his desire to see the best possible treatments being made rapidly available for patients. He has certainly stimulated a wide-ranging debate.

I declare an interest as a trustee of the charity Ovarian Cancer Action and as a one-time practising clinician. We have heard from a number of noble Lords about the time-consuming, bureaucratic regulatory pathway that new drugs have to go through, and we should do something about that—I hope that the noble Earl might comment. However, I want to concentrate on how it might be possible to bypass this normal route to approval, and to give patients a drug that has just come out of research. I shall limit myself to cancer patients.

We know that the Government are committed to embedding research in the NHS, although we are a little way off delivering fully on that holy grail across the whole of the NHS as yet. However, it is the case that novel candidate drugs for cancers are being developed all the time, and are being used for patients in many major centres around the country. At the Cancer Research laboratories that we heard about, the Christie hospital in Manchester, the Beatson Institute in Glasgow and centres in most other cities new drugs are being developed all the time. The £200 million cancer fund has been invaluable in making them available for patients. What will happen to this funding when the source dries up, as I believe it might? It is a tragic fact that, despite some remarkable advances, there remain many cancers that have proved terribly resistant. Ovarian and pancreatic cancer, for example, creep up on patients with vague symptoms or none at all, so that diagnosis is often made too late.

The point is, however, that as novel treatments become available, they can be and are being tried. Of course, there are strict conditions. Novel treatments can be given to individual patients only during clinical trials or on a named patient basis, where patients are made fully aware of the risks and dangers as well as the fact that the treatment may or may not help them. They must give their informed consent. Then, the best conditions for giving the treatment must be available. Those involved in the research, who understand the possibility of adverse side effects, should be available, as should the laboratory facilities to monitor the patient’s response. These are the conditions under which it is reasonable to give novel treatments, and they are just the ones that are provided by the NHS in our major cancer centres around the country.

It should be clear, too, from all of this that it is difficult to provide these conditions outside major centres, particularly in private hospitals where the expertise may not be available. Consultants there are often on their own, and do not have the full back-up that would give them confidence. They may feel vulnerable and unwilling to take the risks to which they would be exposed. Furthermore, private funders may be quite unwilling to fund untried treatments or the extra tests needed to monitor the patients.

I come to the problem described by the noble Lord, Lord Saatchi. It is clear that we do not currently lack the ability to try out novel treatments within the NHS, and I have described the best conditions under which they should be and are being given. However, there are problems of continuing funding, with particular difficulty in private hospitals and in some district general hospitals which lack the facilities. In those hospitals, doctors and their patients need to be made aware of the limitations that exist. When the possibility of a novel treatment arises, patients should be offered the prospect of transfer to a centre where the relevant research is going on and the treatment is being given.

This debate has been invaluable in setting out a set of problems that really deserve our attention. The need to be able to speed through the availability of novel therapies is vitally important, and we must do something about the regulatory burden. However, so far as the use of innovative treatments is concerned, I am not yet convinced that we need a new law to achieve what we want. We should concentrate on spreading information about what novel treatments are emerging across the whole of the service, what treatments are available in our cancer centres, and ensuring the rapid transfer of patients to those centres.

I very much look forward to the noble Earl’s response and I hope that he will say something about many of the other problems mentioned today, such as streamlining regulation, availability of cancer funds and replacement of those funds by some other source. I believe that we owe an enormous debt of gratitude to the noble Lord, Lord Saatchi, for raising the debate, and for giving me my moment in the sun on the Front Bench.

Health: Cancer

Lord Turnberg Excerpts

Monday 14th January 2013 Lords Chamber

[Earl Howe]

My Lords, I am very interested to hear about the treatment mentioned by my noble friend and I can remind her, although I am sure she needs no reminding, that one of the key roles of NICE is to keep evidence of new treatments under review. I do not doubt that as a result of my noble friend’s intervention, it will wish to look at that particular treatment. Pancreatic cancer can grow initially without any symptoms and it is possible that people might not recognise the symptoms. That is why the “Know 4 sure” campaign, which I have mentioned, highlights four key symptoms including loss of weight and pain, which can be symptoms of pancreatic cancer.

[Lord Turnberg]

My Lords, is it not the case that the diagnosis of pancreatic cancer is extremely difficult? The organ lies deep within the abdomen and cannot be seen or felt, so by the time the patient shows symptoms, it is often too late. What we really need is research that will provide us with a biomarker which can be used for screening and early diagnosis. Can the noble Earl tell us whether research along these lines is going on within the NHS?

[Earl Howe]

My Lords, via the Medical Research Council we are supporting a study to assess the effectiveness of a new test called the Mcm5 protein test to see if it can help to diagnose cancer of the pancreas, bile duct and gall bladder. I am also aware of a number of other research projects that my department is funding in the field of pancreatic cancer and I would be happy to write to the noble Lord with the details.

NHS: Hospital Beds

Lord Turnberg Excerpts

Thursday 6th December 2012 Lords Chamber

Asked By

[Lord Turnberg]

To ask Her Majesty’s Government what assessment they have made of the analysis of hospital bed availability in the report Dr Foster’s 2012 Hospital Guide.

[The Parliamentary Under-Secretary of State, Department of Health (Earl Howe)]

My Lords, Department of Health data show that the average bed occupancy rate for all beds open overnight has remained stable, at between 84% and 87% since 2000. Rather than being a cause of concern, this indicates that hospitals are making efficient use of beds. NHS hospitals need to manage beds effectively in order to cope with peaks in demand. We expect to see higher occupancy rates in winter, when these demands are at their highest.

[Lord Turnberg]

My Lords, in thanking the Minister for his response and his endurance, I believe that we owe a debt of gratitude to Dr Foster for the report, which shows so clearly how severe the stress is that our hospitals are suffering under. With bed occupancies of 95% to 100% for much of the year for many of the hospitals, there are too often no beds available, staff are rushed off their feet, patients are not cared for properly, infection rates rise and mistakes occur. Given that almost one-third of the patients now in hospital do not need to be there and would be better off cared for in the community, and given that the community services cannot provide that care because they are so underfunded, where are we to get the money from? Simply saying that we can close a hospital or two and slide the money across from a cash-strapped NHS before those services are available will just exacerbate the problem. Would it not be better to use those end-of-year surpluses that we have been hearing about instead of returning them to the Treasury?

[Earl Howe]

My Lords, as I mentioned earlier, NHS underspends are not lost to the NHS—they can be carried forward from year to year. But on his central point, I should make it clear that we are struggling to reconcile the Dr Foster bed occupancy figures with those that we have. Dr Foster has stated that bed occupancy is at a dangerous level, at over 90% for 48 weeks of the year. We are looking closely at that analysis and methodology, but we cannot agree with those conclusions at the moment, given that the department monitors the position on a daily basis during the winter and on a quarterly basis at other times. However, I agree with the noble Lord that there are too many people in hospital. We need to ensure that we move more care into the community. I do not see this as insuperable within the current budgetary expenditure limits.

Social Care

Lord Turnberg Excerpts

Thursday 29th November 2012 Lords Chamber

[Lord Turnberg]

My Lords, I, too, thank my noble friend Lady Pitkeathley for introducing this timely debate. She made a remarkably robust case and we have had some excellent, well informed speeches today. I imagine that it is very hard for the Minister not to have got the message, even though I suspect he does not need it. I, too, am struck by the faint ring of familiarity about this debate.

I want to focus on just two aspects: standards of care for the elderly and the mentally ill, and the integration of hospital and community services. Last week, we had two important reports. One was on the prosecution of those responsible for maltreating an elephant and the other from the Care Quality Commission about the poor standards of care for the elderly and mentally ill—and here, this elephant in the room, although rather more devastating, disappeared from the news rather too quickly.

The CQC painted a picture in which, faced with a rising demand from increasing numbers of elderly patients suffering from an often complex mixture of diseases, many nursing homes and some NHS hospitals were failing to meet basic standards of care. Failing to treat patients with the dignity that they need, failing to feed them properly and failing to care for their basic needs was just too common for comfort. Very importantly, it also found that management and staff vacancy rates were very high. As a result, poorly trained staff were rushed and asked to take on tasks for which they were ill equipped. Patients with complex multiple diseases need well trained staff, and these are in short supply.

All this may sound familiar and similar to repeated reports going back at least 15 years. We have had Age Concern’s report in 1997, the Healthcare Commission in 2004, its successor in 2007, and now in 2012, with so far not much change. If we do not do something now, it will just get worse. So is there anything we can do, apart from putting more money in? Of course, we need more money. Incidentally, the noble Lord, Lord Shipley, spoke about the valuable contribution that the elderly make to society. I do not think that we should forget that the elderly—that is, those over 65—who are supposed to be retired contribute to the national Exchequer through taxed income, and that needs examining. Apart from putting more money in, though, we could look again at the need for the proper training and registration of healthcare assistants. It was a grave error that we were unable to persuade the Government to include in the recent Health and Social Care Act a requirement for healthcare assistants to be trained and registered. I hope that the Minister will look again at the proposal to wait three years before we can revisit that decision.

I turn to the need to co-ordinate care between hospital and community, which has been the subject of some discussion this afternoon, and the need for the seamless care that we are supposed to provide. The problem has been well rehearsed, with elderly patients sitting in acute hospital beds when they would be better off at home or in accommodation more suited to their needs. There are many causes, including, of course, the lack of resources in the community that we have heard about, but often it is the result of failures in communication between the hospital and social services—and it is particularly bad at weekends and holidays. No one seems to take responsibility for this liaison, which is so essential, yet we know what to do, and indeed it is being done in many places. We do not have to go to Canada, where they have set up a very effective multidisciplinary team devoted to integrating care; we have excellent examples in Torbay, which is always being cited, where they have a single, merged care trust. Hereford and Devon have different but innovative schemes for integration. It is not only in leafy, affluent parts of the country where they are making a change; great work is going on in Bradford, Wolverhampton and South Birmingham.

So we know what to do, and one wonders why it is not being done everywhere. Partly it is a lack of lack of local leadership, and perhaps a touch of NIH syndrome—“not invented here”—that sets up resistance to change. Equally, though, we have not seen enough pressure and incentives from the centre. We need to use more carrots and sticks, as well as local leadership. Perhaps the emphasis in the new NHS mandate on care of the elderly and mentally ill will give us the push that we desperately need, and yesterday’s speech by the Secretary of State shows that it has moved up the agenda. I reiterate that we need action on many fronts: to encourage integration between hospital and social services; to ensure the better training and recruitment of healthcare assistants; and, as the noble Baroness, Lady Pitkeathley, pleaded, to have more resources for community services.

Health: Cancer

Lord Turnberg Excerpts

Wednesday 7th November 2012 Lords Chamber

[Earl Howe]

Yes, my Lords. While the document to which my noble friend refers does make explicit that the cancer strategic clinical network will be focused around domain 1, which is reducing mortality, nevertheless improvements to patient experience and patient safety underpin all NHS care and those matters will be similarly embedded in the work of all strategic clinical networks.

[Lord Turnberg]

Does the noble Earl agree that the cancer networks have been invaluable in supporting research into new treatments and that any reduction here would be regrettable?

[Earl Howe]

I absolutely accept that one of the benefits we have seen from the clinical networks is the spread of innovative best practice through the health service, particularly in local areas. That is very much what we wish to preserve. The networks will help local commissioners of NHS care to reduce unwarranted variation in services and encourage innovation. We are determined to see that continue.

National Health Service (Clinical Commissioning Groups) Regulations 2012

Lord Turnberg Excerpts

Tuesday 16th October 2012 Lords Chamber

[Lord Turnberg]

I am afraid that my message tonight will be rather familiar. Although I listened carefully to the noble Baroness, Lady Cumberlege, whom I respect enormously for her experience, I am afraid that I cannot agree with her. Commissioning services in the NHS is an extremely complex activity. For CCGs to make rational decisions, they need the best data and information available about their populations and how to meet their needs.

I understand that economists talk about perfect and imperfect markets. Perfect markets exist where both the purchaser and provider know exactly what they are getting and giving. This is particularly important when we talk, for example, about packages of integrated care, especially care across the hospital community divide. Who better to provide the data and information that CCGs need than those working locally in our hospitals? CCGs should not only understand the needs of their populations; they also need to know something about what can realistically be provided locally to meet those needs. Relevant questions might include whether the local hospital provider has the relevant orthopaedic surgeons who can do specialised and complicated knee or hand surgery, whether it has the oncologists and haematologists to deal with all cancers or only some, and whether it has the relevant up-to-date scanning facilities. There will be a dozen other questions that only local knowledge can answer.

It seems obvious to many in the field that local specialists and nurses from the local trust are in much the best position to provide the answers, and to engage constructively with GPs in the provision of services. The idea that there is a conflict of interest appears to me to be nonsense. Of course there is local interest. Local consultants and nurses are there to provide local knowledge and information. The idea that consultants and nurses from elsewhere can be parachuted in to provide local information is asking too much, quite apart from the problem of whether another trust will be willing to allow its staff time off to travel around the country.

We do not want or need disinterested clinicians in the CCGs; we need interested clinicians. I hope that the noble Earl will listen if not to my noble friend Lord Hunt then to the royal colleges, which are very strongly in favour of local input from the secondary sector.

[The Parliamentary Under-Secretary of State, Department of Health (Earl Howe)]

My Lords, I begin by thanking the noble Lord, Lord Hunt, for tabling this Motion, which provides a welcome opportunity to clarify the Government’s intentions in making these regulations on clinical commissioning groups—an opportunity that I feel is rather necessary in the light of some of the speeches that we heard this evening.

The regulations set out the legal requirements on the size and membership of a CCG’s governing body. Together with amendments made to the National Health Service Act 2006 by the Health and Social Care Act 2012, they provide a clear legal framework within which CCGs can appoint their governing body and develop appropriate governance arrangements. CCGs will be different from previous commissioning organisations. They will be built on the GP practices that together make up the membership of the CCG. These member practices must decide, through developing their constitution, how the CCGs will operate. They must ensure that they are led and governed in an open and transparent way that allows them to serve their patients and population. It is vital that CCGs are clinically led, with the ownership and engagement of their member practices, so that they can bring together advice, as noble Lords emphasised, from the broadest range of healthcare professionals to influence patterns of care and to focus on patients’ needs.

That is a necessary preface to the subject that has been the focus of much of tonight’s debate: the role of the governing body of the CCG. Following the NHS Future Forum, we introduced measures in the then Health and Social Care Bill to strengthen governance arrangements for CCGs, primarily through the requirement for each CCG to have a governing body that would have responsibility for ensuring that the CCG operates effectively, efficiently and economically, and does so with good governance. As we discussed during the passage of the Bill, our intention was to provide the public with greater confidence that CCGs would have suitable governance arrangements in place, including independent views and strong leadership, and would have proper checks and balances for the stewardship of public money. CCGs will be the guardians of significant amounts of taxpayers’ money. It is therefore only right that there are strict requirements in relation to governance, probity and transparency of decision-making. We must balance the benefits of the clinical autonomy of doctors with a robust management of potential or actual conflicts of interest. It is essential to get this right, and that means a proportionate and reasonable approach.

The Health and Social Care Act already provides real safeguards against conflicts of interest. The CCG must make arrangements in its constitution for managing conflicts and ensuring the transparency of its decision-making process, and it must have appropriate governance arrangements, including a governing body with lay members and other health professionals. These arrangements will be scrutinised by the NHS Commissioning Board as part of the process of ensuring that a CCG is fit to be established as a commissioner.

The requirements in relation to the secondary care doctor and registered nurse are therefore part of an overall package of requirements to ensure that they operate with good governance. We made clear in the Government’s response to the NHS Future Forum in June last year that neither the secondary care doctor nor the registered nurse should be from a local provider in order to prevent any potential conflicts of interest. We did that because a conflict of that nature would be a constant issue for a secondary care provider, given that CCGs will be responsible for commissioning the vast majority of hospital services. In contrast, CCGs will not commission primary care—that will be the responsibility of the NHS Commissioning Board. Therefore, for the most part, GPs on the governing body do not have a conflict of interests, and in any case GPs will not necessarily be in the majority on a CCG governing body.

On any occasion where CCGs consider commissioning local community services, arrangements must be made to manage both actual and potential conflicts of interest in such a way as to ensure that they neither affect the integrity of the CCG’s decision-making process nor appear to do so. The NHS Commissioning Board has issued guidance and a code of conduct for CCGs to deal with that set of circumstances.

What then is the role of the secondary care doctor and registered nurse on a CCG governing body? Their primary role, along with other members of the CCG governing body, will be to ensure that the governing body exercises its functions effectively and with propriety and absolute fairness. However, each member of a governing body will be expected to bring additional perspectives to underpin the work of a CCG. For the specialist doctor and the registered nurse, this perspective will be to provide a view beyond primary care and a broader understanding of health and social care issues—specifically patient care in a secondary care setting for the specialist doctor and, for the nurse, the contribution of nursing to patient care.

That is different from the role of clinicians in commissioning. Involving clinicians in commissioning has been one of the primary goals of our healthcare reform. I need to underline that as it is very much separate from the specific role of the CCG governing body. The detailed work on service design will not be done by the governing body of a CCG: rather, it will be done by the CCG itself, working with clinical networks and other multiprofessional groups. The governing body will have oversight of the governance of this decision-making process.

CCGs have a legal duty to obtain advice from people with a broad range of professional expertise when carrying out their commissioning responsibilities. My noble friend Lady Williams was absolutely right in saying what she did on that score. This could involve, for example, a CCG employing or retaining healthcare professionals to advise the CCG on commissioning decisions. Local knowledge and an in-depth understanding of local health issues will come not only from local GPs and their member practices but from other local clinicians, including local secondary care clinicians, who will work with CCGs to review local health needs and design local services. So the arguments presented by the noble Lord, Lord Hunt, and others around excluding local secondary care clinicians from the governing body as affecting the quality of the CCGs commissioning are wholly misplaced.

As to the restrictions placed on councillors preventing them from serving on CCG governing bodies, I start with a point of principle. We have been very keen from the outset of our reform programme to limit political interference in the day-to-day activities of the NHS. We have always been clear about that. Consequently, in addition to local authority members, we are also excluding MPs, MEPs and London Assembly Members from serving on a CCG governing body. However, our proposals do not mean that councillors are excluded from CCGs. A local councillor may still serve as a member of a committee or sub-committee of a CCG governing body, with the exception of the remuneration committee, as long as a CCG has set out the arrangements for such a committee in its constitution. A councillor falls within the description of an individual “specified in the constitution” as being eligible for membership of a committee. A CCG may provide in its constitution for any function of the governing to be exercised on its behalf by a committee or a sub-committee of the governing body, or by any individual of a description specified in the constitution. These arrangements could therefore allow for a local councillor to play a pivotal role in the CCG’s decision-making without formally being on the governing body.

NHS: Professional Qualifications Directive

Lord Turnberg Excerpts

Monday 15th October 2012 Lords Chamber

[Earl Howe]

My Lords, it is important to understand that the EU social partner process, which is driving the discussions at the moment and has been extended to 31 December, is autonomous. It operates independently of both the Commission and the Council and the Government have no formal role in any social partner negotiations. Having said that, we have made it clear to the Commission and to partners in Europe that securing long-term sustainable growth has to be the EU’s key priority. We will continue to work with our partners to ensure that EU measures support labour-market flexibility and do not impose significant costs on member states or burdens on business. The Government would welcome proposals coming forward that would preserve the right for all workers, including those in the NHS, to choose the hours that they work, including in particular flexibility in the areas of on-call time and compensatory rest as well as the preservation of the individual opt-out.

[Lord Turnberg]

Does the noble Earl agree that the working time directive as it now operates is detrimental both to patient care and doctor training? Is it not time that we stopped at least the nonsense of counting time in the 48 hours as time when one is on call, even though one may never be called? Will the noble Earl make sure that the case is made to the EU that at least this part of the directive is rescinded?

[Earl Howe]

The SiMAP and Jaeger judgments are very much the focus of our representations to the EU Commission. The disquiet about those judgements and the inflexibility that they have brought is shared by other member states. It is also important to recognise that none of us wants to go back to the past, with tired doctors working excessive hours. Tired doctors make mistakes; there is substantial evidence to support that. No one wants or deserves to be treated by tired doctors. There is a balance to be struck. The inflexibilities in the directive need to be addressed, but we should not go back to the bad old days when doctors became too tired to do their work.

NHS: Specialised Services

Lord Turnberg Excerpts

Wednesday 18th July 2012 Lords Chamber

[Lord Turnberg]

My Lords, I am sure that we are all grateful to the noble Baroness, Lady Jolly, for introducing this debate and setting out the issues so clearly. There is deep concern among the support groups that speak for patients with rare diseases that the loss of this advisory group, newly formed as it is, will be a retrograde step and create confusion and a loss of a valuable asset. I have no doubt that the Minister will try to reassure us by saying that this will all be taken care of by the commissioning board. There is little or nothing in the Health and Social Care Act, or in any other document I have seen, that offers any confidence yet that this has been given enough serious attention. I look forward to him saying rather more than we have heard so far when he comes to round up.

It is the case that the advisory group has been widely regarded as doing a marvellous job. It is recognised not only by the NHS and by patients, but also by other countries as a model for the way services for patients with rare diseases should be provided. It does this by having developed a rational framework that takes account of best practice and societal and health gains. It has done so in a way that is efficient and at a reasonable cost.

I would like to illustrate this by using the example of the group of orphan, or very rare, diseases that rejoice under the name of lysosomal storage diseases. These include Gaucher’s disease, Hurler’s syndrome and a number of others. They affect few patients, almost all in childhood. An average GP in an average year is unlikely to see a case. If she is faced with a case she is unlikely to know what to do about it and left to herself is likely to be reluctant to fund the patient’s care.

These are the sorts of cases that have to be funded and commissioned centrally and cannot be left to CCGs. Only when sufficient knowledge and expertise are available can commissioning be rationally arranged. Here, the advisory group has been invaluable. It is not simply commissioning that is needed. The provider services for rare diseases must be distributed in a limited, rational number of places to make the best use of limited resources. Specialised services for children with lysosomal diseases are located in only three places: London, Birmingham and Manchester. For adults they are located in five places around the country. Only by limiting the number of sites can you expect to develop a critical mass of specialised doctors, nurses and other healthcare workers to provide the best possible care. They are also the places where teaching and research into these diseases can best be done.

That is one example. Similar needs apply to a much larger number of diseases, each of which occurs rarely. The Genetic Alliance UK is an umbrella organisation that brings together over 150 patient-led charities, each set up to support these patients, again mostly children, with genetic diseases. Most of them fit into the category that is covered by the advisory group; that is, they affect fewer than 500 patients a year and currently the advisory group covers about 70 specialised services. For these patients, the advisory group has made all the difference. Yet now there is much concern that all this expertise will be pushed out and dissipated as the commissioning board takes on its multitude of responsibilities.

Can the Minister reassure us and them that there will be a rare disease plan in the mandate for the board? Will the board have access to the specialised expert advice that is so valuable and ready made for this purpose in the advisory board? I am sure that he is well aware of the need and requires no prompting from me on this, but I hope that he is going to be able to say something today that will help allay these concerns.