Health: Pancreatic Cancer

Baroness Morgan of Drefelin Excerpts

Monday 23rd April 2012 Grand Committee

[Baroness Morgan of Drefelin]

My Lords, I congratulate my noble friend on securing this important debate and I declare my interest as CEO of a cancer research charity. I am also proud to be a patron of Pancreatic Cancer UK, and I am particularly proud of its work in its Campaign for Hope, which is a very important initiative. As a vice-chair of the All-Party Parliamentary Group on Cancer, I wanted to try to put together some of those interests and to talk about the work that the all-party group is doing that is important to patients with pancreatic cancer.

As we have heard, people with rare cancers are often diagnosed later and suffer poorer outcomes than those with more common cancers. I should like to thank the Government for listening to the all-party group and others for including one-year cancer survival rates alongside five-year rates for breast, lung and colorectal cancer in the NHS outcomes framework.

We believe this focus on the NHS implementing interventions that improve early diagnosis—which is key to better survival—is important. However, we must not forget that 53 per cent of people who die from cancer in the UK have a less common cancer such as pancreatic cancer. We have to ensure that improvements are made across the board and that the gap in survival between patients with less and more common cancers does not widen but starts to narrow. This is why the All-Party Parliamentary Group on Cancer has called for the one-year and five-year indicators in the NHS outcomes framework to be expanded to cover all types of cancer. I would be grateful if the Minister could provide an update on what consideration his department has given to broadening out these indicators to include less common cancers and pancreatic cancer in particular.

I would like to make a couple of points on patient experience. We know that the experience of cancer patients must improve, particularly for those with pancreatic cancer. The 2010 National Cancer Patient Experience Survey revealed that patients with rarer cancers had less positive views of their treatment than those with more common cancers. Pancreatic Cancer UK has today illustrated this further through its briefing for this debate. If we are to encourage commissioners to take action to improve this situation, the National Cancer Patient Experience Survey must be conducted annually and be included as an indicator in both the NHS outcomes framework and the commissioning outcomes framework. It would be helpful to know what progress has been made towards this.

As we all know, cancer networks have been extremely important in driving up standards in the last few years. Once the reforms are implemented, CCGs will be responsible for non-specialised cancer services while the NHS Commissioning Board will undertake specialised commissioning. For patients with rarer conditions, such as pancreatic cancer, this means that some parts of their care pathway will be commissioned locally while others will be commissioned nationally. Cancer networks play an important role in overseeing commissioning plans and ensuring that seamless care pathways for patients are delivered. Could the Minister update us on the Government’s plans for cancer networks?

I thank my noble friend Lord Aberdare once again for securing this important debate and Pancreatic Cancer UK for its vital work.

Health and Social Care Bill

Baroness Morgan of Drefelin Excerpts

Monday 27th February 2012 Lords Chamber

[Lord Warner]

My Lords, I rise briefly to lend my support to Amendment 64ZA in the names of the noble Baroness, Lady Finlay of Llandaff, and my noble friend Lord Hunt. I do so on the basis of my experience as chairman of the provider agency in London after my time as a Minister. We have seen in London how strategic leadership at the level of, in this case, the strategic health authority has transformed stroke services and A&E and trauma services. There is no doubt, based on the London experience, that these kinds of changes will not be engineered at the local level. They require populations of considerable size, particularly when we are living in the era of the European working time directive and its effect on the rostering of specialist services and clinicians, to produce the kind of quality of service that people need.

There is often a kind of conflict between that strategic leadership and the wishes of people at the local level putting pressure, if I may put it that way, on their local doctors to keep services very local. I accept that the Government wish to have a lot of this decision-making down at the local level, but we have to recognise that there is sometimes a conflict between that localism and planning in the area of emergency services as regards the most effective way of providing high-quality services to patients.

The Minister therefore needs to listen to concerns such as those that the noble Baroness, Lady Finlay, was expressing, because we know from the evidence in London that these kinds of services need to be planned at a major-population level.

[Baroness Morgan of Drefelin]

My Lords, I rise briefly to support Amendment 50A in the name of the noble Baroness, Lady Finlay, and the noble Lord, Lord Patel, and Amendment 63A in the name of the noble Baroness, Lady Finlay. We need to be clear that the role of NICE in our health system is extremely important. It plays a pivotal role in helping the system to understand innovation, and it is extremely important in promoting fairness. At a time of very tight resources, it would be good to have the role of NICE clearly set out in the Bill. I know that the noble Baroness, Lady Finlay, talked about the reputation of NICE and the role that it plays in facilitating audit and many other things. For me, however, it is about making sure that we have fairness across the NHS in England, and NICE is key in ensuring that that happens for patients.

I want to comment briefly on Amendment 63A. Others have talked about the concerns of the Neurological Alliance. I speak as the honorary president of Cancer52, which represents people affected by rare cancers. The majority of cancer deaths in this country occur because of rare cancers. We know that if a person is diagnosed with a rare cancer, they have often had to really fight through the system, visiting GPs many more times than those with the more common cancers which people call the “big four”. Oesophageal, pancreatic and ovarian cancer, for example, are conditions of which GPs have very little experience. There is a great deal to be done in the NHS to improve outcomes for people diagnosed with what are often called less common or rarer cancers, but which are a group of conditions which account for more than 50 per cent of all cancer deaths. The noble Baroness, Lady Finlay, is right to say that we should be encouraging commissioners to ensure that, where rare conditions are concerned, there is collaboration and knowledge and experience sharing so that they do the right things for patients, regardless of how common their condition may be.

[Baroness Jolly]

My Lords, I had not intended to speak because everything had been said. However, the noble Lord, Lord Walton of Detchant, made a point that I think is worth picking up on. I declare an interest as chairman of the Specialised Healthcare Alliance, which works with people with rare and complex conditions. These conditions are commissioned by the NHS Commissioning Board, while the conditions referred to by the noble Baroness, Lady Finlay, in Amendment 63A are intended to be commissioned by CCGs. Clearly, people are really anxious about these commissioning arrangements. They are based on geography; they are relatively small in number, but not tiny; they are geographically sparse; and very often GPs will not actually see these conditions very frequently.

The noble Lord, Lord Walton, asked whether any thought had been given to sweeping these conditions in with the rare and complex conditions, and to have them commissioned by the NHS board. I am not suggesting whether this is a good or a bad thing, but I think that those with these conditions and the organisations that represent them might be glad to engage in a dialogue on this to see whether it is the appropriate way forward. There is certainly a lot of anxiety about what is currently happening. If my noble friend would give us some indication of whether that could be looked at, that might alleviate some concern.

--- Later in debate ---

[Baroness Morgan of Drefelin]

I follow on from the comments of the noble Lord, Lord Turnberg, and will speak to Amendments 99 and 100. There has been a great deal of debate in Committee and now at Report about the duties of the new clinical commissioning groups and how the commissioning of health services should be improved. I will briefly expand on some of the points that have been made in previous debates on this subject.

We know that the commissioning of cancer services could often be better. I remind the House again of my interests in this matter. It is crucial that a range of experts are involved in commissioning. As the noble Lord, Lord Turnberg, has just said, they will need all the help they can get. It is crucial that expertise is used and sought, for example from people operating within the many cancer networks that currently do such an excellent job in supporting cancer commissioning.

I welcome new duty on clinical commissioning groups provided by new Section 14V, which commands that they will need to obtain appropriate advice from professionals with a broad range of expertise in the prevention, diagnosis or treatment of illness. The noble Baroness, Lady Finlay, has tabled an amendment which slightly expands on that duty and mentions the need for expertise in the whole of the patient pathway. That amendment is interesting as well.

I also believe that clinical commissioning groups, during their authorisation process and annual review, should be required to demonstrate how and where they obtain advice to commission cancer services. This would be a very important point of transparency. Ideally this should include, for example, a cancer lead in each clinical commissioning group who is responsible for liaising with the clinical networks and local authorities to ensure a co-ordinated approach to commissioning cancer services across the pathway.

I should like to ask the Minister two brief questions concerning clinical commissioning groups’ new duty to obtain appropriate advice. First, could he update the House on how the Government will monitor the implementation of this crucial new duty? How will clinical commissioning groups be required to report on it, and at what level of detail? Will it, as I mentioned, include named leads, and how will these reports be monitored? Secondly, what steps will be taken if a clinical commissioning group fails to fulfill this crucial duty, and by whom will these steps be taken? The role of cancer networks and the expertise that they bring to bear is key. That should not be lost through this process.

[Baroness Masham of Ilton]

My Lords, I have put my name to Amendment 99. Will the Minister tell the House a bit more about the clinical senates? He has spoken about them previously but it would be interesting to hear a bit more about who will actually be on them, who will pay for them and how will they give their information. There are many people, especially in the cancer field, who would like to know more.

--- Later in debate ---

Moved by

[Baroness Morgan of Drefelin]

60A: Clause 22, page 19, line 16, at end insert “, and
“(c) research supported by the health service for the purpose of protecting the public in England from disease or other dangers to health”

[Baroness Morgan of Drefelin]

My Lords, I shall speak also to Amendments 66AA and 67AA in my name. The amendments are all designed to ensure that we have a strong commitment to the research duty throughout the NHS that matches the aspiration and vision set out so clearly during the debates on this issue on Report. There have not been many elements of the Bill so far that have been welcomed and united the House quite so strongly as the Government’s acceptance of the strengthening of the research duty placed on the Secretary of State, the NHS Commissioning Board and the clinical commissioning groups. As we know, that was met with universal support around the House. Once again for the record, I declare an interest as chief executive of a medical research charity, Breast Cancer Campaign, which is a proud member of the Association of Medical Research Charities. We have been one organisation among many calling for the research duty to be strengthened.

While amendments to strengthen the research duty were widely supported, the debate on the first day of Report when these amendments were discussed reiterated a critical issue that was also raised in Committee: the duties must be meaningful and must therefore be monitored. There must be monitoring mechanisms in place throughout the system to ensure that the research duty is not there in theory alone. For that reason, I was reassured to hear from the Minister that the Secretary of State would be expected to report on how he fulfils his statutory duty annually, that CCGs will need to demonstrate how they will exercise important functions, including the duty of research during the authorisation process, and that a CCG’s commissioning plan and annual report will cover the exercise of the duty of all the CCG’s functions. However, no mention was made during the debate of the NHS Commissioning Board being required to report back on its duties when reporting its annual plan and business plan. The purpose of Amendments 66AA and 67AA is to make sure that we really address this key matter. I admit to being a bit confused about the Government’s position on reporting on duties. On the one hand, the research duties have quite rightly been strengthened but, on the other hand, there is a notable reluctance to ensure that it is a priority and a requirement for the Commissioning Board to report back on the activity relating to this duty. We need to have that transparency, so that we can see the benefits of the duty percolating through the system.

The duty relating to research is now stronger in wording than the duty relating to inequalities, but the Government have decided to include their own amendment, adding inequalities to the list of duties on which the board will be required to report. They have chosen not to do likewise for research. While I welcome and support the requirement to report on inequalities, this new step by the Government has reinforced my concern over whether there are sufficient reporting mechanisms embedded in the new structures of the NHS to promote adequately the vision of a research-led NHS that has found such widespread support in this House.

If, as the Minister may respond, all duties should be reported back on, why have this subsection, which identifies and highlights specific duties, within the clause at all? We are looking at a case of first among equals when it comes to some of the duties that the board is required to fulfil. How are we to understand what differences this will bring in reporting requirements? I hope that the Minister can use the opportunity now, late as it is, to reassure me that research will be a priority for the Commissioning Board and that there will be explicit reference to research and to the board’s plans in relation to it in the business plan and in the report.

Amendment 60A is to seek further clarity on what is to be understood by the term,

“research on matters relevant to the Health Service”.

My concern on this point is to ensure that the terminology used in the duty should be sufficiently comprehensive. For example, will the current wording require the NHS to enable research to occur, and to support it, as well as utilising the evidence from research that is available? Having discussed this with the noble Earl, I am confident that he will be able to reassure me on this point. I beg to move.

[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.

--- Later in debate ---

[Earl Howe]

My noble friend is not correct. The board will have a duty to promote research, and we have debated that point. What it will not have is the budget for the National Institute for Health Research, which is held centrally. I think that noble Lords have welcomed that because it will mean that that budget is held separately from the board’s own budget. However, that does not absolve the NHS Commissioning Board from responsibility for promoting research. Indeed, it will do that and have responsibility in particular for ensuring that the health costs of research carried out in NHS establishments are covered under the various tariffs. That will be a major part of the board’s work.

I hope that I have reassured the noble Baroness sufficiently to enable her to withdraw her amendments, but I should of course be happy to talk to her outside the Chamber if there remain points that she would like to raise with me.

[Baroness Morgan of Drefelin]

There is one matter on which I should be really grateful for the noble Earl’s help. In his helpful response to this debate, he said that there will be some key duties on which the Commissioning Board will need to report in particular. Will he also remind us that the Commissioning Board should report on all its duties, because I am not feeling that reassured at the moment?

[Earl Howe]

I apologise to the noble Baroness. I thought I had made it clear that of course there will be a duty on the clinical commissioning groups to assure the board that they have fulfilled all their functions. We fully expect that research will be covered in that. These particular duties have been mentioned in the Bill only either because they are absolutely integral to the delivery of outcomes, or because they relate to a fundamental strand of accountability—namely, the duties to reduce inequalities, to improve the quality of services, and to promote public involvement and consultation. These really are central to everything that the board and CCGs will do. It is not because there is any greater obligation on the board to comply with them than there is in respect of any of their other duties. The same applies to CCGs.

[Baroness Morgan of Drefelin]

I thank the Minister, not only for giving me double reassurance in this debate, but also for the work that I know he has done personally to ensure strengthening of the research duty in the Bill in the first place. I also thank all noble Lords who took part in this debate. I withdraw the amendment.

Amendment 60A withdrawn.

Health and Social Care Bill

Baroness Morgan of Drefelin Excerpts

Wednesday 8th February 2012 Lords Chamber

[Lord Patel]

My Lords, my name was on many of the amendments of the noble Lord, Lord Willis of Knaresborough, in Committee about promoting research. As someone who has been involved in or trying to do clinical research for many years—I declare an interest as a member of the council of the Medical Research Council—I commend the Government and welcome the amendments. They open up the possibility for commissioning groups to promote research in many ways, such as promoting clinical trials and encouraging the development of tissue banks, proper bioinformatics and proper audit and record-keeping. That will open up the field of stem cell therapy, bioinformatics, regenerative medicine and genomics, which will be very good for the NHS.

[Baroness Morgan of Drefelin]

My Lords, I, too, put my name to the amendments in Committee that have helped to precipitate this very welcome government amendment and the support of the Minister. I do not want to repeat what has already been said but I want to make one point: we in the House of Lords have worked hard to promote the importance of research in the NHS, and we will take a strong interest in the mechanisms that I am sure the Minister will describe in a moment, and indeed later on Report, to see how this duty will be promoted and evaluated. There are also important mechanisms in this House through the Science and Technology Committee, and I hope that many of the noble Lords who are on that committee will bear that in mind when it comes to looking at how this welcome duty is put into practice.

[Baroness Finlay of Llandaff]

My Lords, I would also like to formally record an enormous welcome to these changes to the Bill. What has been said in particular by the noble Lords, Lord Willis and Lord Warner, is very pertinent regarding the need to keep questioning. The one thing now that can happen is that those who are actively involved in research can actually question if they get blocked, in a way that they could not before. I think that they will be very bright and questioning people who will make it known if they are not able to do the research that they see needs to be done for the improvement of clinical services.

Indeed, if we can speed up the processes, perhaps we can create an environment in which all patients and relatives understand that a research-rich environment is one that drives up standards of care, and therefore that they are not being experimented on but are being invited to participate when there is equipoise in the highest standards of monitoring that they could possibly have. The governance around research processes in this country is potentially second to none. We may then regain some of those external trials that up until now have, sadly, been bleeding from our shores. The amendments are incredibly important and their universal welcome is very appropriate. The Minister is to be personally congratulated.

Health and Social Care Bill

Baroness Morgan of Drefelin Excerpts

Wednesday 8th February 2012 Lords Chamber

[Baroness Morgan of Drefelin]

I wonder whether the Minister could clarify something for me. I very much support the line of argument around the amendments. However, I am interested to know whether, if the Secretary of State has a duty to report back on the exercise of these duties, does that say anything about the importance of reporting on his other duties? Is a hierarchy being created? That is a point for clarification.

[Earl Howe]

There is no hierarchy but the Secretary of State will be bound to report to Parliament and, in doing so, he must show that he has exercised his functions in a way that fulfil his statutory duties under the Bill. Parliament will no doubt hold him to account for having done so. He must demonstrate across the piece that he has had regard to those duties.

Health: Breast Cancer

Baroness Morgan of Drefelin Excerpts

Thursday 12th January 2012 Lords Chamber

Asked by

[Baroness Morgan of Drefelin]

To ask Her Majesty’s Government what assessment they have made of the implications for women with breast cancer of the recent concerns regarding Poly Implant Prothese implants.

[Baroness Morgan of Drefelin]

My Lords, I beg leave to ask the Question standing in my name on the Order Paper. In doing so, I declare an interest as chief executive of the research charity Breast Cancer Campaign.

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

My Lords, the expert group chaired by Sir Bruce Keogh concluded that, on the available data, PIP implants are not associated with a higher risk of breast cancer than other silicone gel implants. Women who have had PIP implants on the NHS following surgical treatment for breast cancer will be able to consult an NHS doctor and if they wish, in the light of that clinical advice, have the implants removed and, if appropriate, replaced.

[Baroness Morgan of Drefelin]

I thank the Minister for that Answer. I welcome the Statement made by the Secretary of State for Health in the other place and the reviews being set up to look at both of the issues here. This is an issue that is causing a huge amount of concern for women with breast cancer. I welcome the assurances of the Secretary of State that, where women have been treated on the NHS, the PIP implant will be removed, and where patients have been treated privately, and those companies refuse to remove the implant, they can then seek help from their GP from the NHS.

[A noble Lord]

Oh!

[Baroness Morgan of Drefelin]

I apologise, but I need to get the detail right. I am concerned about women who are diagnosed with breast cancer, treated privately and are then refused help from that private practitioner. At the moment, when they come to the NHS they are only promised the removal of that PIP implant, not subsequent replacement and reconstruction. I do not think that is right, and I hope the Minister will be able to reconsider that.

[Earl Howe]

My Lords, I understand the point that the noble Baroness is making, but I think that most people would agree that it would be wrong to let private providers off the hook. In the first instance, we are saying that the woman, if she has been treated privately in the circumstances the noble Baroness has described, should seek advice from her private clinician. Only then, if the clinician or the clinic let her down, will she be able to have recourse to the National Health Service. I think that that is fair.

As regards the replacement of the implant, we do not think that other NHS patients should be disadvantaged in this way. Every time the NHS picks up the tab for the private sector, we are displacing patients of the NHS who are in need. Therefore, there is a balance to be struck here and we have made our decision on a very good basis.

Health and Social Care Bill

Baroness Morgan of Drefelin Excerpts

Monday 28th November 2011 Lords Chamber

[Baroness Morgan of Drefelin]

My Lords, I rise to speak to Amendments 130, 131, 147, 150, which are in my name. I have also added my name to Amendments 215 and 218. These are very big groups and the Minister has my sympathy. I am sure he is listening very carefully to all the advice that he is receiving. I would particularly like to add my support to the remarks made about the power of procurement to promote innovation.

I want to speak about research and the research duty. My amendments are designed to add weight to the research duties in the Bill and follow on from the excellent debate on Clause 5 in relation to the Secretary of State’s research duty. I thank the Minister for his letter, which he has circulated to those who took part in that debate, although I fear that it may have raised rather more questions than it has answered. I apologise to the noble Earl for that, and I would like to go through a few of them now. I declare an interest as chief executive of a medical research charity, Breast Cancer Campaign.

In the debate on the research duty in Clause 5, many excellent examples of research were highlighted. It might be useful very briefly to reflect again on the impact that research has on the lives of people in this country, and to mention a report on cancer survival rates by Macmillan Cancer Support that had a great impact in the media last week. It highlighted that people now live nearly six times longer after their cancer diagnosis than was the case 40 years ago. Many noble Lords will be aware that for nine of the 20 cancers studied by Macmillan, median survival time is three years or less, with little improvement since the 1970s. The report highlighted the achievements that research has made but also that there is an awful lot more work to do.

It is also important to remember that there is a lot of research about quality of life. For instance, median survival time for breast cancer has doubled since the 1970s. Investment in research has played a fundamental role in this and yet more than 12,000 women still die from breast cancer every year. As I said, research is not only about improving survival rates. Many women with advanced breast cancer live with complex support requirements that are frequently not met, as evidenced by the research published recently by Breast Cancer Care and funded by my charity, which raises serious questions about pain control, for example. Ensuring that the NHS is committed to supporting research is absolutely key to addressing long-term improvements in survival but also improvements in quality of life for patients today.

Amendments 130 and 131 are intended to strengthen the research duty that has been placed on the Commissioning Board. Amendment 39, which we talked about a few days ago, removed the phrase “have regard to the need to” from the research duty on the Secretary of State, thereby strengthening it, and Amendment 130 seeks to do the same for the research duty on the Commissioning Board. During the debate on Clause 5, the noble Lord, Lord Willis, explained eloquently why the words “have regard to the need to” in the clause would be better removed ,and how by doing that we would have greater clarity and a better statement of intent would be established. So it would be helpful if the Minister could explain why we need to see those qualifying words in this clause. It would be particularly useful to be given practical examples of the effect that removing the words would have, because I suspect that they are not necessary and that the Bill might be better off without them.

I was also extremely heartened to hear the Minister say that he sympathised with me and with many other noble Lords when we argued that the research duty should be strengthened and that he would undertake a “closer consideration” of the research duty. I would welcome hearing a little more about his thoughts on that today, particularly whether any amendments to Clause 5 could be in the making, and whether they could be read across into Clause 20.

Moving on to Amendment 131, this seeks further clarity on the meaning of,

“research on matters relevant to the health service”.

I do not want to rehearse the arguments made previously in relation to Clause 5 and the wording of this phrase except to request a further explanation of its definition, including practical examples to aid our understanding which I hope the Minister will be able to provide either today or later in writing. In correspondence, the Minister helpfully clarified that public health was covered by the current definition, which was an important point for the noble Lord, Lord Warner, as I recall. However, the intention of Amendment 131 is to seek further clarification and a definition of the phrase so that we can understand whether it is sufficiently comprehensive. Public health is one issue that we are very clear about. It is covered, but we need to be confident that the duty is comprehensive in that regard. I believe that a more substantial definition is required and I am pleased to have the opportunity to request this today. For example, with this definition in place, what are the implications for NHS staff who are involved in supporting research? Will there, for example, be sufficient research nurses to support research activity, will clinical training incorporate time for research and how will research successes be recognised and encouraged as part of NHS career progression and structures?

In terms of what we know about the Commissioning Board, what will it be doing with respect to research? The Government have attempted to reassure noble Lords that the Commissioning Board is aware of the need to promote research and indeed that one of the board’s most important functions will be to support a culture that promotes research and innovation. I welcome this but I feel that in practice there is still very little detail about how this will happen. It appears that research will not form one of the six key portfolios of the board, but will fall under the commissioning development portfolio. Will this include, as I believe the Minister’s letter suggested, the development of commissioning tools and commissioning guidance ensuring that patient care is commissioned so as to support the conduct of research in the NHS? I note with interest that the Government are committed to ensuring that the systems and processes for commissioning used by the NHS Commissioning Board and clinical commissioning groups will ensure that research is promoted, supported and funded by the NHS, including the tariff, commissioning guidance and processes for authorising and supporting the development of clinical commissioning groups. That is important, but I would be grateful if the Minister were able to provide further detail on the activities of the Commissioning Board in relation to research.

Will the development of commissioning tools and guidance as defined be sufficient to embed a culture of research in the NHS? While we have heard that the tariff for patient care will incorporate the costs of patients who are taking part in research projects, how will infrastructure costs be captured? Obviously I am thinking about the cost, for example, of storing tissue for research purposes. I fear that what we have been provided with so far is a number of ad hoc references to research that do not attempt to embed comprehensively a research culture into the NHS or set out a vision of what the research duties would mean in practice.

That brings me to Amendments 147 and 150. Two clear opportunities to ensure that the board is accountable for its actions with respect to the research duty now present themselves in relation to the business plan and the annual plan. I note with interest—and I believe that many others have noticed this—that the board must publish a business plan setting out how it proposes to exercise its functions in that year and in each of the next two following years, and at the end of the year it must also publish an annual report on how it intends to exercise its functions. There is therefore a great opportunity here. However, I am puzzled as to why Clause 20 establishes that the business plan and the annual plan must report how the board proposes to discharge its duties only under new Sections 13E and 13P, and likewise explain in the annual report its performance under those sections, which cover the duties on the improvement of quality of services and public involvement in consultation by the board. Again that is very important, but there is no comparative requirement with respect to new Section 13L and the duty on research. Again, there is an opportunity here to improve the feedback loop. I would be grateful if the Minister could explain what plans there might be to bring forward government amendments or to accept the amendments now before the Committee.

[Lord Willis of Knaresborough]

My Lords, I am delighted to follow the noble Baroness, Lady Morgan, and particularly to support her comments about the duties in respect of research. But perhaps I may also say that the noble Baroness, Lady Thornton, raised a very important issue in her opening remarks, which is the definition of the difference between a duty to provide and a duty to commission. There is a subtle but important difference between the two. Commissioning, as the noble Lord, Lord Warner, clearly stated, is something for which there is a huge budget, so it is very important indeed that it is used effectively. I was particularly interested in Amendment 129A tabled by the noble Lord, Lord Warner. We are all puzzled about the Government’s intentions in terms of prizes and incentives to encourage innovation and to bring research out of the labs, if you like, to the bedside.

There are some extremely good examples of this. The noble Lord, Lord Warner, mentioned the work of his noble friend Lord Darzi, particularly the Health Innovation Challenge Fund. I have just finished chairing the fund’s three-year review, and it is interesting to note that three years into the five-year programme, new devices, technologies and procedures are being brought forward from research to clinical outcome. Some 13 of these are now up and running, and some are quite remarkable. We have seen the groundbreaking research to deal with the onset of blindness being undertaken at Oxford. Within five years we will have gene therapies that will make a huge difference to patients suffering from a whole range of conditions, including macular degeneration. That will have a massive effect not only on patients’ lives, but also on the health service budget itself. It is important work and there are other good examples on which we need to move forward.

I want to speak specifically to Amendments 215 and 218 tabled in my name and those of the noble Baroness, Lady Morgan, and the noble Lords, Lord Patel and Lord Turnberg. I should also declare an interest as chair of the Association of Medical Research Charities. Amendment 215 concerns the role and responsibilities of clinical commissioning groups towards research and includes, within their commissioning plans, how they intend to execute their duty as defined in new Section 14X. That commissioning groups should have a duty to promote research was recommended by Professor Steve Field, the chair of the NHS Future Forum, when he said in his report:

“Support for research and innovation is also important for evidence-based commissioning and practice, so the report recommends that commissioning consortia should have a duty to promote research and innovation and the use of research evidence in the NHS”—

a recommendation which was immediately taken by the Government, to their credit, and, indeed, was welcomed by the medical research community.

Health and Social Care Bill

Baroness Morgan of Drefelin Excerpts

Tuesday 22nd November 2011 Lords Chamber

[Baroness Northover]

At the moment the CQC is relatively well known because its reports are in the press fairly frequently. The reports of the investigations that it has been undertaking have caused considerable concern. I cannot give the noble Lord a scientific response based upon polling as to the recognition of the CQC, but I would guess that it is somewhat higher than some of the organisations representing the patient voice that have been there before. When patients went into hospital and had concerns about various things, did those organisations spring to the forefront of their minds? Possibly not.

[Baroness Morgan of Drefelin]

I too have listened to this extremely important debate with a great deal of interest. I am slightly losing the thread of the Minister’s argument. When the Minister started, she was saying that the debate was about how we put patients at the centre of the NHS. However, I think that the debate has been about whether or not HealthWatch England should be independent. What the Minister is saying is very interesting, and I do not want to interrupt her for too long. I want to understand what the benefits to HealthWatch England are of being enclosed within or subordinate to another organisation. If we want to have a HealthWatch England that is out there punching above its weight and really taking patient interests to the Secretary of State and the Commissioning Board, it would seem to have a much better opportunity to be heard, recognised and understood as an independent organisation that is not subordinate. Why do the Government think it is better to wrap it up inside another organisation which is very different in character, and make it dependent and subordinate to that organisation? How will that help it to fulfil its objective?

[Baroness Northover]

I am sorry that I am not putting this clearly. One of the major points about this is for HealthWatch England to be in a place where it can have a direct effect upon organisations like the CQC. We know from history that even when you have a national organisation, it does not necessarily mean that it has the effect that one would wish; the noble Baroness will know that all too well. Various parts of this organisation have various obligations built in to listen to HealthWatch, which we hope will help, but because it is there as part of CQC there is an obvious relationship, because CQC is the organisation that goes in and regulates the institutions that deliver care. The CQC regulates; the various institutions and other bodies provide the care. HealthWatch England is trying to draw out the patient’s voice in this, and make sure that it is heard loud and clear.

Fancy this; I have just been given a quote from the chief executive of National Voices, Jeremy Taylor, who says that he is,

“not sure that it matters where HealthWatch England sits. What matters is whether it has clout, credibility, independence and sufficient resources. One could have a big debate about whether it should sit as a separate body or as part of the CQC. Colleagues may have different views. My view and the view expressed in the forum is that HealthWatch England will be an important part of the architecture for the patient voice, so we should welcome it.”––[Official Report, Commons, Health and Social Care Bill Committee, 28/6/11; col. 67.]

--- Later in debate ---

[Lord Walton of Detchant]

My Lords, I believe it would be helpful to the Committee, even if one leaves aside the crucial role of Monitor with its new, major responsibilities, if the Minister could let us know what kind of administrative support, and in particular what kind of financial management support, Sir David Nicholson and his staff in the national Commissioning Board will have. Can he give us any information about that?

[Baroness Morgan of Drefelin]

My Lords, I am not sure whether my intervention will complicate the debate further but I very much support the sentiments behind the amendment of the noble Lord, Lord Warner. The idea of standardised management accounts could be very helpful. One of the questions I invite the Minister to address is connected to my concerns about how we ensure that the NHS as an environment for research and innovation and as an engine for our economy is properly promoted and understood. Can the Minister comment on what the role of the Office for Budget Responsibility might be in looking at the NHS spend—the billions of pounds that go into the NHS—and whether there is a role for the Office for Budget Responsibility in looking at how the economy is benefiting from the investment that we make as a country in the NHS.

[Lord Hunt of Kings Heath]

My Lords, I am grateful to my noble friend for moving the amendment. I should like to start with the question about the scale of the financial challenge. As my noble friend suggested, the amount of money that has got to be taken out of the NHS through efficiency in the next four years is considerable. The indications are that while in the current financial year there will be some parts of the NHS that really struggle, by and large the service is going to get through. However, years two, three and four are going to be much more fundamental challenges. The need for the NHS to use its assets as effectively as possible, to get on with reconfiguration of services, and for all groups involved in the NHS to buy into that kind of change, is going to be essential. The more comparative information that can be provided the better, which is where I hope the Minister will be responsive to my noble friend.

The noble Lord Lord, Lord Owen, mentioned procurement. I should wear a hat as president of the Health Care Supply Association, and say that he is right to identify procurement as a potential area of much greater efficiency in the future. However, the Minister will know that two recent reports from the Public Accounts Committee have raised concerns about procurement and really are inviting the Minister in particular and the department specifically to take on a much greater leadership role in ensuring—it is rather like the Green report suggested—that the NHS makes the most of its potential buying power. I ask the Minister how, in the devolved structure that the Government are enunciating, we can ensure that on issues such as the use of our assets and procurement we still act as one national service making the most of our buying power? Unless we do that, there are going to be continuous PAC reports looking at the problem of national direction.

Finally, I endorse the comments made by the noble Baroness, Lady Williams. What about clinical commissioning groups? The Bill is silent on how CCGs are to be accountable. One way would be the publication of comparative performance of how they use their resources—the more comparative performance, the better. I should also like to ask the Minister about primary medical services. As we know, this has always been a difficult area. We have had various efforts through the GP contract to have much more of a performance culture. I cannot say that has been uniformly successful. However, in these days of stringency, I do not think we can get away with that any longer. It would be good to hear how we can extend the whole concept of efficiency performance measurement into an area of the health service, such as GPs themselves, where I am sure there is much more efficiency to be gained.

Health: Cancer Drugs Fund

Baroness Morgan of Drefelin Excerpts

Monday 14th November 2011 Lords Chamber

Asked By

[Baroness Morgan of Drefelin]

To ask Her Majesty’s Government what assessment they have made of the effectiveness of the cancer drug fund.

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

My Lords, since October 2010, more than 7,500 patients in England have benefited from the additional funding we have provided for cancer drugs. The £600 million we have committed over three years will improve the lives of many thousands more cancer sufferers, giving them precious extra time with their loved ones.

[Baroness Morgan of Drefelin]

My Lords, I remind the House of my interest as chief executive of a cancer research charity. Can the Minister share with the House thoughts on plans for the fund, following the abolition of strategic health authorities which are currently responsible for administering the fund? Will he share with us any thoughts the department has about emerging patterns of variation in access to the fund? I appreciate that it is a new fund and that patterns are difficult to see in a field where there are small numbers. I would, however, be interested to know what steps the department is taking to issue further advice on that question.

[Earl Howe]

My Lords, I pay tribute to the noble Baroness for her work in this area. She asked what would happen when strategic health authorities are abolished. Arrangements from 1 April 2013, which is the planned abolition date, and beyond will be the subject of discussions between my department and the NHS Commissioning Board Authority. So I cannot give her definite news yet on that front.

I know that the regional clinical panels are using their own judgment to come to decisions, and it is entirely right that they should. At the same time, they are alive to apparent variations in the drugs that are being made available through the fund in different regions, and I understand that the SHA clinical panels are working collectively now to better understand the reasons for those differences.

Health and Social Care Bill

Baroness Morgan of Drefelin Excerpts

Wednesday 9th November 2011 Lords Chamber

[Lord Rea]

My Lords, I have a short question, on a subject mentioned by my noble friend Lord Turnberg and others. The National Institute for Health Research is now directly related to the Department of Health. Is it going to stay there, or is it going to be moved over, as was suggested, to the NHS Commissioning Board? Is the funding going to be assured? I do not think that we are quite sure about these things.

[Baroness Morgan of Drefelin]

My Lords, I was delighted to lend my name in support of these amendments. We have had a tremendous debate, which is a sign that the Committee stage of the Bill is starting to get down to business and focus on some of the nitty-gritty, now that we have moved on from some of the more extremely high-level principles about whether or not we should see Clauses 1 and 4 in the Bill.

I very much support the opening remarks of the noble Lord, Lord Willis. He is chair of the Association of Medical Research Charities. I declare an interest myself as chief executive of a medical research charity, Breast Cancer Campaign. We are members of the noble Lord’s association, and are very grateful to him for the leadership that he gives.

There are very few points I want to add to the debate, as it has already been very comprehensive. In thinking about this, I want to stress how incredibly important it is that we understand the role of research in the NHS as a driver for quality and improving outcomes for patients. Only today at the AMRC AGM, I heard someone describing research as one of the three pillars, alongside service delivery and education, and stressing the role that research plays in driving up quality and outcomes for patients.

We know that this is something that is not lost on the public. We have already heard what importance the public place on research delivery in the NHS—93 per cent of people asked by the AMRC in a MORI poll said that they wanted their local NHS to be encouraged or required to deliver research locally. That is an enormous vote of confidence in research in the NHS.

The public do not just say this in answer to surveys. They vote for research through their wallets, as we have already heard from a number of noble Lords. Medical research charities contribute £1 billion to research in this country. That is an enormous achievement.

The contribution that the NHS makes to medical research worldwide is very special indeed. It is quite simply a no-brainer that research has consistently delivered real progress for patients. I believe it is agreed that the NHS has a special and unique role to play, which is unparalleled in the world. We have already agreed around the House that in this country we punch above our weight, as the noble Lord, Lord Walton, said. As the noble Lord, Lord Turnberg, said very eloquently, we know that the UK generates over 10 per cent of the world’s clinical science and health research outputs and has created nearly a quarter of the world’s top 100 medicines. That is a great achievement. Now that the noble Lord, Lord Darzi, is back in his place, I can remind the House that in the earlier debate he commented on how life expectancy continues to rise, following on from the success of medical research.

As I said at Second Reading, there are many examples where the special nature of the NHS has contributed to progress. I mentioned particularly the million women study, supported by Cancer Research UK in partnership with the NHS, a collaboration that revealed the role of hormone replacement therapy in breast cancer risk—an enormous study, made possible by the NHS. I also talked about a project that my own charity is involved in. It is a real challenge. Noble Lords have already made many points about the difficulty in establishing informatics systems. We are working to establish a tissue bank, to look at breast cancer specifically, and to drive forward the vital role that genomics plays. This is also made possible by the NHS. There are many examples, as I have said.

I welcome this duty. It is the first time we have seen a duty of this nature on the Secretary of State, and it is a very important step forward, but if the duty is going to be meaningful we need to know—so I would like to hear from the Minister—what the Government will see as success in executing that duty. I want to understand what success will look like—what will be the benchmarks that the Secretary of State will use to know whether his duty has been executed successfully.

Will we continue to evaluate the contribution that NHS research makes to GDP? How will the NHS research duty play in to the research assessment exercise that is undertaken in higher education? Could that be used to show how effective partnerships work in the NHS, because it is often those partnerships between NHS trust and academic institutions which are so important? What could Monitor or the Care Quality Commission do to help us understand the contribution that research has made to improving outcomes in various settings? Will we have an impact rating for NHS foundation trusts relating to their promotion of R&D? Will we be considering the number of patients in clinical trials as a measure—that is something that many people are worried about at the moment? Should we be looking at the number of clinical fellows or clinical professors in surgery?

What will success look like for the Secretary of State? I have heard talk that a research tariff is being developed; that has been referred to in correspondence. I would be grateful if the noble Earl could explain whether it is and what the consultation process might be. There has been a suggestion that a diagram or an organigram might help us here when looking at how the funding streams might work. We had a meeting with Dame Sally Davies when that was on the agenda. We have been reassured that funding will work in the same way as in the past. I am not sure whether it can, so I should be grateful if the Minister could reassure us on how that would work and perhaps produce a diagram for us.

[Baroness Emerton]

My Lords, I have appreciated all the contributions on the amendments on research. There is just one thing that I take issue with: the contribution of the noble Lord, Lord Ribeiro, who said that his profession was the Cinderella of research. Other professions would describe themselves as being Cinderellas in terms of research funding. Obviously, I speak for nursing and midwifery, but also for the other healthcare professions, which are all graduate professions and which are concerned to give evidence-based practice wherever they are in the NHS. Perhaps the noble Earl could re-emphasise that it will be multiprofessional research. All the contributions this evening have been on medicine and scientific research, but the other professions can contribute an enormous amount. Nursing is very reliant on charitable, voluntary funds for its research and has done some tremendous research exercises in clinical procedures, as have the other professions—midwives and physiotherapists. Will the noble Earl consider this being a multiprofessional research board?

Health and Social Care Bill

Baroness Morgan of Drefelin Excerpts

Monday 7th November 2011 Lords Chamber

[Baroness Morgan of Drefelin]

My Lords, I agree with the noble Lord, Lord Mawhinney, who has given the Minister some very positive and practical advice. When the Minister responds to this debate he will probably say something similar to what he said at Second Reading, where he was very clear that the Government agree that there should be a duty of candour. The question is about how best to deliver that. As I understand it, the Government have launched a consultation about how to deliver a duty of candour through the contractual means that noble Lords have already alluded to. There seems to be agreement around the House; the noble Lord, Lord Winston, suggests that he is unpopular, but he too accepts that there is an issue we need to address.

I believe that the consultation on the contractual route finishes on 2 January. I do not know how that fits in with our Committee timetable, but it would be helpful for the Committee to see how my noble friend’s amendment could be worked through in a more practical way. My noble friend Lady Masham has spoken very eloquently about issues of deep concern to patient organisations in this country, and we have to do better than a contractual route. Patients have a right to know when something goes wrong, and in this country’s NHS we need a system, a process, that allows health professionals to admit when something goes wrong in an environment that can learn from those mistakes. Where there are errors and where professional misconduct takes place then of course action must be taken, but it is important that there is openness so that the system can learn and these errors can be stopped from happening again. The noble Lord, Lord Harris, made the point about patients and others not always seeking legal redress but in many cases looking for an apology and an assurance that the mistake will not happen to anyone else.

I am sure that the Minister will be persuaded by this debate that we need a more practical and constructive way forward. I appreciate his comment in his response at Second Reading where he said that it would be inappropriate to pre-empt the consultation that finishes on 2 January and to amend the Bill before the Government have a chance to respond to the consultation. That may coincide very well with Report stage—I do not know what the timetable is like—but I hope that the two can dovetail and help my noble friend Lady Masham with her cause in this amendment.

[Lord Marks of Henley-on-Thames]

My Lords, I welcome the amendment introduced by the noble Baroness, Lady Masham, and others, and applaud the powerful and eloquent way in which she opened the debate and in which others have spoken.

I wish to make a brief contribution regarding the litigation consequences of a lack of transparency. Over a number of years, though not in the immediate past, I conducted clinical negligence cases, many of which concerned allegations of negligence against practitioners and organisations within the health service. I am not one of those who regard such litigation as frequently the result of an unwelcome development of a compensation culture within this country, approaching the situation in the United States. Without generalising, in most of the cases in which I have been involved— certainly those that came to trial—there has been a real basis for concern on the claimant’s part, whether or not the claimant has ultimately been successful.

With respect to the points made by the noble Lord, Lord Winston, I remember cases where the process of litigation itself demonstrated not only that that particular claimant had been poorly served but that there had been systemic failings within aspects of the health service that required changes to be made. When those changes were then made, they brought substantial benefit to subsequent patients.

A feature of much of the early litigation in which I was involved, though, was that it was frequently very difficult to obtain full records and a full account of the history from the point of view of the defendants within the NHS providers, and of course they alone were in possession of the relevant information. That is against the background that for many years there has been a procedure for obtaining the disclosure of relevant documents from potential defendants to these actions, even before the actions are commenced.

In recent years, procedures have been greatly improved by the impact of the clinical negligence protocol, introduced in 1999 as part of the Woolf reforms. However, the protocol is not binding, although it introduces a code of good practice and provides a partial answer to the points made by the noble Lord, Lord Mawhinney. The code requires a comprehensive system of what it calls adverse outcome reporting. It requires clear and comprehensible information to be given to patients, and for advice to be provided to patients on any serious adverse outcome and the options available to them. In such cases, access to records is to be given to patients within 40 days of a request. The protocol has done a great deal when it is fully observed. However, the fact that it is not always observed is clear from many of the speeches that we have heard this evening.

A further point is that the protocol applies only in cases where there is a serious adverse outcome for patients. Furthermore, it is only a code and does not impose statutory requirements. Even in serious cases, and where the code is followed, requests for documents and pursuit of the procedures generally involve lawyers, and this process can be lengthy, time-consuming and expensive. If not well handled, the process can tend to harden and entrench positions, making conflict and, therefore, contested proceedings more likely. Furthermore —this is another point I make to the noble Lord, Lord Mawhinney—the process is not effective in less serious cases but this amendment would apply in such cases, although there is a limit to it. It refers only to cases that,

“may have caused harm, or may in the future cause harm”.

The cost of negligence cases to the NHS is simply staggering. According to a Written Answer given in the other place on 8 June this year, the total in damages paid to successful claimants in 2010-11, including in periodical payments cases—which are treated in the figures as lump sums—exceeded £1 billion. The total of claimants’ costs paid out was around £214 million, and the total of defendants’ costs was £72 million. If improvements in transparency could be made to reduce these vast amounts, particularly the costs, they would be very welcome. As my noble friend Lord Mawhinney pointed out, all the money spent on costs is money that might have been made available for healthcare.

In a large number of cases, as the protocol recognises and as the noble Lord, Lord Harris of Haringey, and others have pointed out, what claimants and potential claimants want is to know at a very early stage what has happened to them—to have someone explain frankly exactly what has gone wrong and then, where appropriate, to have someone apologise for any errors. Anything that helps to bring about a more effective way of ensuring that that happens will avoid many cases that currently end in litigation. As a result, many patients will be far better served. Therefore, there is much to be said, across a range of cases, for establishing far better procedures than there are now to ensure that full explanations are provided in a timely fashion.