Health: Transition to Adult Health Services
Lord Hunt of Kings Heath Excerpts(9 years, 10 months ago)
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Lord Hunt of Kings Heath
To ask Her Majesty’s Government what action they are taking to ensure the continuity of standards of care for teenagers with long-term health conditions who transfer to adult NHS services, as recommended in the Care Quality Commission report From the Pond into the Sea.
The Parliamentary Under-Secretary of State, Department of Health (Earl Howe) (Con)
My Lords, our 2013 pledge to improve health outcomes for children and young people included the ambition to co-ordinate care around the individual young person with complex needs to deliver the best experience of transition to adult services. The partners to the pledge—including NHS England and Health Education England—are working to deliver this. Our mandate to NHS England calls for improvements in the way that care supports smooth transitions between children’s and adult services.
Lord Hunt of Kings Heath (Lab)
My Lords, I am grateful to the noble Earl. He will know that this is a worrying report and that it would appear that young people with long-term health conditions often fall through the net when they transfer to adult services. He said that the mandate to NHS England requires it to do something about this, but can we be confident that NHS England actually will take note of what Ministers ask for? I would just refer him to the inability of NHS England to implement the Winterbourne recommendations and its failure to fund mental health services in accordance with parity of esteem. Does the mandate amount to anything at all? Too often Ministers have come to this House and said that something would be done, but nothing has actually happened.
Earl Howe
I think that I can reassure the noble Lord on this point. NHS England is currently developing service specifications across the range of commissioning models: specialised commissioning, CCG secondary and primary care commissioning, adolescent mental health and special educational needs, and learning disability. Those will translate examples of best practice and published outcomes into specifications for commissioning to hold providers to account for the delivery of robust transition services with measurable quality standards attached to them.
Healthcare Professions: Regulation
Lord Hunt of Kings Heath Excerpts(9 years, 10 months ago)
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Lord Hunt of Kings Heath
To ask Her Majesty’s Government what plans they have to modernise the regulatory framework for the healthcare professions.
The Parliamentary Under-Secretary of State, Department of Health (Earl Howe) (Con)
My Lords, we asked the Law Commission to undertake a major review of professional regulatory legislation, which reported in April this year. The report is complex and needs thorough consideration, which we are currently undertaking. We are committed to legislating on this important issue when parliamentary time allows. In the mean time, we are already using secondary legislation to make urgent changes necessary to make sure that patients can continue to be confident they are receiving safe care.
Lord Hunt of Kings Heath (Lab)
My Lords, the noble Earl will recognise that the Law Commission work has been extremely valuable. The outcome is potential legislation to modernise all the regulatory bodies in the health service, which has the full support of all the regulatory bodies. The noble Earl cannot be serious in suggesting that a lack of time prevents Parliament considering that Bill. It was widely expected to be taken in this Session, and I am sure that we could come back a week or two earlier to help the noble Earl get this through. Is the real case not that the Government are so worried about their stewardship of the NHS that they dare not bring a Bill on healthcare in this Session?
Earl Howe
No, my Lords. We understand the frustration felt by the regulators that this has not been taken forward yet, but other government priorities have had to take precedence. That is the reality that we must accept. As I have said, we are committed to legislating on this important issue when time allows. With that in mind, we are currently working hard in consultation with key partners, including the professional regulators and patient and professional representatives, on our response to the Law Commission’s work. The complexity of that exercise cannot be overemphasised.
Elderly People: Abuse
Lord Hunt of Kings Heath Excerpts(9 years, 11 months ago)
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Lord Hunt of Kings Heath (Lab)
My Lords, I, too, thank the noble Baroness, Lady Cumberlege, and also pay tribute to the noble Baroness, Lady Greengross, who many years ago first alerted the nation to the problem of abuse of older people. It is fantastic that she is here battling away on that most important issue.
I acknowledge that we have made progress in recent years, with the changes in the Care Bill—perhaps not as much as we wanted but definite progress—strengthening the CQC regulatory framework and the requirement for local authorities to submit returns on incidents of abuse of vulnerable adults. What will happen when those returns come to the Health and Social Care Information Centre? Can one then expect that to form the basis of government policy changes?
I turn to the question of regulation, which the noble Baroness raised. The noble Earl and I have argued about the regulation of care workers; we will not solve that this afternoon. The noble Baroness also raised the question of the Law Commission’s work. Until a few weeks ago, we fully expected, in the fifth year of this Parliament, to have a Bill from the Government. It became known among the regulatory bodies that in fact the Government were not now going to produce a proper Bill but were going to produce a draft Bill for pre-legislative scrutiny. There is another rumour that the Government are not even going to bring a draft Bill in the next Session. I do not think that it needs a draft Bill. It is quite clear that the work undertaken by the Law Commission is perfectly ready for a Bill to be prepared and put into the Queen’s Speech.
The great danger—this is the main point I want to make—is that if we do not have a proper Bill, I should have thought that there is absolutely no chance of a Government in 2015 bringing forward a substantive Bill in the first two terms, so it could be quite a long time before we get a substantive Bill. The noble Earl’s department is doing no work on the Section 60 orders that we currently use. There could be incredible blight among the regulatory bodies unless the Government begin to get a grip. Of course, the noble Earl will not respond to me on this point, but even at this late stage, I would hope that the Government would reconsider why we cannot have a substantive Bill in the next Session.
On financial abuse, is the noble Earl ready to say a little more about what we can do about the abuse of the power of attorney and the point raised by my noble friend Lord Wills on cold callers?
I also ask the noble Earl about the comments of the noble Lord, Lord Mawson. It seems to me that one reason for the lack of co-ordination between agencies is the normal organisational resistance to working together. The second is obviously cost shifting between different bodies, which we know happens at local level. Does the noble Earl agree that a third reason is that people are being very defensive? The reason for filling the forms in is not for the benefit of the older person; it is to prove, when an inquiry happens, when an investigation takes place, that the staff have done what is right. What will the Government do to move away from the current blame culture into one in which staff are encouraged to work together, not just fill in these ridiculous forms, which are no good to anyone?
Independent Living Fund
Lord Hunt of Kings Heath Excerpts(9 years, 11 months ago)
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Earl Howe
My Lords, the provisions in the Care Bill will apply equally to everyone with care and support needs, including those who are currently receiving support from the ILF. The aim of the ILF is to support independent living for disabled people. The overarching aim of the Care Bill is to give people with care and support needs more choice and control over their lives. It focuses specifically on their well-being and the outcomes that they want to achieve, and puts them at the heart of the system. That would be my reply. There is no question of forcing people into residential care. The starting point is: what are the needs and wishes of the individuals involved, and how can care be built around those?
Lord Hunt of Kings Heath (Lab)
My Lords, can the noble Earl guarantee that no current recipient of the fund will lose out when money is transferred and it is the responsibility of local government? Will he tell the House why this money is not being ring-fenced? Will he acknowledge that in two recent examples of money being transferred by his department to local government—the Healthwatch budget and the public health budget—local authorities have not passed on the full amount? How will he ensure that local authorities spend that money on independent living?
Earl Howe
As the noble Lord knows, local government social care funding is not ring-fenced. We believe that allowing local authorities the flexibility to manage their budgets locally means that they can respond to local needs and priorities better. The Care Bill, as I have just said, will require local authorities to involve the person in the development of their care and support plan and, as far as possible, agree that with them. The person’s care and support plan may be different from their current package, but the central point is that they will be at the heart of the process to ensure that the package provides them with choice and control over their lives.
NHS England: Health and Social Care Act 2012
Lord Hunt of Kings Heath Excerpts(9 years, 12 months ago)
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Lord Hunt of Kings Heath
To ask Her Majesty’s Government whether they plan to amend the Health and Social Care Act 2012 to permit the Secretary of State to give day-to-day directions to NHS England.
Lord Hunt of Kings Heath (Lab)
My Lords, I beg leave to ask the Question standing in my name on the Order Paper and draw Members’ attention to my interests.
The Parliamentary Under-Secretary of State, Department of Health (Earl Howe) (Con)
My Lords, the Government have no such plans to amend the Health and Social Care Act 2012. We believe that the power and responsibility for commissioning services should be exercised by the healthcare professionals closest to patients. That is why we legislated through the Act to establish autonomous local clinical commissioning groups supported by NHS England, an independent and accountable national body.
Lord Hunt of Kings Heath
My Lords, that is a pity because the 2012 Act must be the most flawed piece of health legislation there has ever been. On the question of autonomy, first, can the noble Earl tell me why CCGs are not allowed to be autonomous and why they are subject to very overbearing, day-to-day control by NHS England? Secondly, because NHS England is discriminating against the funding of mental health services and against the precept of parity of esteem, why are the Government not intervening and telling NHS England to reverse its policy?
Earl Howe
My Lords, I do not accept that CCGs are subject to unreasonable controls from NHS England. It is the task of NHS England to support CCGs and hold them to account, and that is what I believe it is properly doing, not least through the outcomes framework. Ministers are not intervening on the question of mental health funding because funding is just one part of the story when it comes to parity of esteem. We have set NHS England a strategic objective to make measurable progress towards achieving true parity of esteem for mental health. NHS England is responsible for allocating funds to clinical commissioning groups, which are best placed to invest in services that meet the needs of their local communities. However, we will of course hold NHS England to account for that. What we must not do is to single out certain elements of the equation at this stage.
Care Bill [HL]
Lord Hunt of Kings Heath Excerpts(9 years, 12 months ago)
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Lord Hunt of Kings Heath (Lab)
My Lords, my amendment is Amendment 41A. As this is a new stage of the Bill, I declare my interests as a consultant and trainer with Cumberlege Connections, president of GS1 and chair of a foundation trust.
I am grateful to the noble Earl, Lord Howe, because we have clearly come quite some way since he introduced at Third Reading in your Lordships’ House the amendment relating to the rules on hospital closures. I hope, however, that he might see his way to moving a little further this afternoon. Closing hospitals is never an easy thing to do and I see a number of former Ministers in your Lordships’ House who bear the scars of hospital closure decisions. In my view, there is no doubt an urgent need to reorder and reconfigure services to allow for the centralisation of many specialist services to improve patient outcomes. Where the clinical evidence is persuasive, I would always support those service changes. We need to be more wary where service changes take place purely on the grounds of financial problems in a particular trust, especially if those changes have a negative impact on well run neighbouring services, where consultation is truncated and if there is an uneven playing field between the different commissioners—which is the subject of the amendment of the noble Baroness, Lady Finlay.
This all arose because of the problems in the use of the special administrator mechanism in the case of Lewisham. The South London Healthcare Trust was in huge financial difficulty; a special administrator was appointed and recommended that Lewisham hospital should have its A&E department downgraded and lose some other services as well. This caused outrage locally because Lewisham was not part of the South London Healthcare Trust, but was a well run and popular hospital, pitchforked into helping to solve a problem that was not of its own making. This ended up in the courts, which found against the special administrator and the Secretary of State. The judge concluded that the Lewisham GP commissioners had not given support to the proposal, which consequently constituted an additional reason why the decision of the Secretary of State could not stand.
The noble Earl, Lord Howe, always reminds the House that the legislative power that was used in the case of Lewisham was enacted under a previous Government. Indeed it was, but I stress that the original power was designed for something entirely different. It put in place measures to dissolve and rescue a trust through administrative reconfiguration. We never saw it as a vehicle for back-door reconfiguration across the health economy. The concern about Clause 118 is that it could allow hospitals to be downgraded or closed simply because they happen to be near a failing one.
I have listened carefully to what the noble Earl has said about the uses of this power. In both Lewisham and Staffordshire, where the power has been used in relation to the previous legislation that the noble Earl has amended, it has run into considerable trouble. In Staffordshire, where the process has also been used, an announcement was made in the last week or so that it has been put on hold. Essentially, the proposals of the special administrator have been roundly rejected by the local community, which shows the issues and problems when this mechanism is used to reconfigure services rather than simply deal with an immediate financial problem of a trust in great difficulty.
In the debate in the House of Commons, there was obviously much concern about this. The Government agreed that a committee should be established, under the chairmanship of Mr Paul Burstow MP, to produce guidelines on the trust special administration process. My amendment is simply designed to give those guidelines some statutory force. The decision of the Government to agree to this was very important and I am sure that, when the guidelines are produced, they will be sensible and set the context in which this mechanism can be used in the future.
However, my argument to your Lordships this afternoon is that it would give even more assurance if those guidelines had to come before your Lordships’ House and the other place for scrutiny and presumably for a decision to allow them to go through if they were found to be acceptable. I follow the precedent set by the Mental Health Act 1983, which gives Parliament a veto over the code of practice that provides guidance to those who undertake duties under that Act. The noble Earl has clearly moved a great deal on this issue over the past few days but it would be nice if he moved a little further.
As he responded to my amendment and that of the noble Baroness, Lady Finlay, perhaps I may save time for the House by asking him a question about the amendment that he has tabled in response to the noble Baroness. In his letter to us of yesterday’s date, he said:
“Our amendment would ensure that agreement is obtained from each commissioner on the basis that the administrator’s recommendations meet the objectives of the trust special administration and that they do so without harming essential NHS services they commission from any other affected trusts”.
He went on to say:
“Essential services at other affected trusts would be defined according to the same legal criterion that applies to commissioners of the trust in administration, thereby ensuring parity between all relevant commissioners”.
The wording that I want to ask the noble Earl about is:
“Our amendment would ensure that agreement is obtained from each commissioner”.
Does that mean that any one commissioner therefore has a veto over an eventual decision? That is how I read his letter. If so, does he agree that if that were used in the case of Lewisham, because the Lewisham CCG objected to the proposals, the proposals would not have gone ahead? If he does agree with my interpretation of his letter, how does he square that with what Dr Dan Poulter said in the Commons on 11 March, reported at col. 267? He said that while all local commissioners have an equal say, NHS England will arbitrate in the event of a disagreement. If, in the end, NHS England will arbitrate, that does not fill me with great confidence. NHS England will simply agree in the main with the original recommendations, because I am afraid that that is the track record of NHS England. In order to get absolute clarity here, I wonder whether the noble Earl could clear up any confusion around that.
Baroness Finlay of Llandaff (CB)
My Lords, I wish to speak to my Amendments 43A and 43B. I start by thanking the Minister and the Secretary of State for the amount of time they have afforded to me in discussing the concerns that lie behind my amendments. It is indeed correct that I was concerned that one clinical commissioning group commissioning from a failing trust could have a disproportionate say over the future. The government amendment, as tabled, addresses those concerns and I am most grateful to the Government for it. It establishes parity of commissioners by ensuring that there is no harm to essential services. I am also relieved that the Government are stating that the same legal criterion will be applied. Therefore, standard-setting across the services will establish that parity.
One of my concerns relates to the guidance. I would be grateful if the Minister could confirm that the committee of which Paul Burstow is the proposed chair will continue to exist. I think that there has been a lack of confidence among the public as a result of the publicity surrounding what happened at Lewisham. It will be very important that the guidance is seen to be drawn up and reported on separately. I must admit that I am uncertain about the mechanism for that. However, I certainly would be concerned if the detail of how the process is laid out is not openly and independently reviewed. The current guidance has to be rewritten anyway and that process could restore public confidence.
Earl Howe
My Lords, this has been an extremely helpful debate. I first pick up a point emphasised by the noble Baroness, Lady Murphy. Trust special administration is indeed a last resort, which was why I took care to spell out the other steps that we might expect to have taken place before administration is even considered. But the previous Government realised, rightly, that we have to have a mechanism in statute designed to deal with long-standing and apparently intractable situations in provider trusts—and not just to have a mechanism of that sort, but one that provides a reasonably swift resolution to the problem of significant failure.
The previous Government provided for a defined statutory timetable for the TSA process and they were absolutely right to do that. Indeed, as the noble Baroness, Lady Finlay, generously acknowledged, her own amendment, had it been accepted, would allow other affected commissioners to consult the public further about the administrator’s final recommendations. Consultation would be through the usual NHS process, taking about 12 weeks. It would fall completely outside the timetable of the trust special administrator and the net effect of such a change would be to reverse the effect of Clause 118. The administration regime would not be creating a complete and timely solution to the problem. It would render the strict legal timetable for the regime ineffective and delay what would be an uncertain resolution very significantly. I hope that noble Lords will not wish to follow that part of the noble Baroness’s amendment. I was glad to hear her say that she would not be moving it.
The noble Baroness asked me whether the committee to be chaired by Paul Burstow on the guidance will continue. Yes, it will. The Government’s commitment in relation to a committee chaired by my honourable friend to review the guidance still stands. The guidance is still important for setting out in detail how the statute should operate. The Government believe that there is significant value in advice from the committee about the guidance. She was right to say that that process should give the public and patients confidence that this is not a set of guidelines dreamt up by Ministers and civil servants on their own.
The amendment of the noble Lord, Lord Hunt of Kings Heath, suggests that the guidance should be laid before Parliament. I need hardly say that that idea falls considerably outside what is usual practice. It is not usual practice to lay statutory guidance before Parliament in the way that the amendment envisages. However, in recognition of the keen interest of parliamentarians in both Houses, we invited my honourable friend Mr Burstow MP to chair a committee of MPs and Peers to consider the guidance. I hope that that mechanism will be sufficient for the kind of buy-in from patients and the public that I have referred to, and will command confidence.
The noble Lords, Lord Turnbull and Lord Hunt of Kings Heath, referred to the situation where commissioners or providers declined to accept the administrator’s recommendation. The noble Lord, Lord Hunt of Kings Heath, asked whether a clinical commissioning group has a veto. Each commissioner of services provided by the trust under administration and affected trusts has to give agreement for the draft and final TSA reports to go forward, but NHS England has a role—which is already in statute—in deciding whether to agree the TSA reports if not all the CCGs agree. I believe that that is right. We cannot expect or oblige every CCG to agree to the TSA proposals in every single case. There has to be a way of resolving any lack of unanimity and this is the mechanism that we believe is right.
Lord Hunt of Kings Heath
My Lords, perhaps the noble Earl will clarify that. If we take the case of south-east London referred to earlier, the trust special administrator would have produced its report, which the Lewisham CCG would not have agreed to, and so the TSA would not have had an agreed report. I suppose the risk is that NHS England or its regional office or a combination of local area teams would none the less have said that they would process the report, even without that agreement. As the noble Lord, Lord Horam, said, the eventual outcome was actually much better than the original recommendation by the trust special administrator.
Earl Howe
My Lords, that last statement is a matter of opinion. We will have to see how the situation pans out. I do not want to make any judgments here and now, but I think there is a difference of view about that.
However, if one or more commissioners does not support the administrator’s recommendations, under existing legislation NHS England can still agree them, if, in its view, the recommendations achieve the objective of the trust special administration. Under our amendments, NHS England has that same role, but its decision would also be in respect of whether the recommendations harm essential NHS services at other affected trusts, and would look at both the definition of essential service and the existence of any harm. NHS England can therefore take into account the views of the commissioner which did not provide support on the basis that it felt the recommendations damaged the essential services that it commissions, and it would then decide whether the argument is convincing.
The noble Lord, Lord Turnbull, took that situation to the extreme and asked what happens if complete stalemate ensues between CCGs. In what we believe would be the unlikely event that a CCG made a decision which amounted to a failure to discharge its duties to act consistently with wider NHS imperatives, there are powers of direction by NHS England to ensure that those duties are discharged properly—but I emphasise that that would be a drastic and unexpected situation.
This regime is about ensuring that the TSA works closely with and consults formally all affected commissioners and providers so that they can input into, agree, plan for and adapt to any recommended pattern of services. CCGs must act consistently with the duty of the Secretary of State and NHS England to promote a comprehensive health service. Given that duty, we would expect CCGs to work closely and constructively with a TSA to avoid what one might call parochial decision-making and to take into account broader considerations for the delivery of publicly funded services in the interests of patients and the taxpayer.
In the end, the NHS must do the greatest good for the greatest number of people. On occasion and in exceptional circumstances, where a TSA is appointed, commissioners and providers may need to see local service change as a means of improving NHS services in the local health economy. I hope that those remarks are helpful by way of explanation and background to these amendments.
Lord Hunt of Kings Heath
My Lords, I will speak to my Amendment 45D, although I may speak to the other two amendments, in the names of the noble Lords, Lord Owen and Lord Turnberg, as well, because they are relevant to the whole debate.
There is no question that the NHS has a rich reservoir of patient information. If we can exploit it to the full, its use could enhance care, aid early diagnosis and be a rich source of data for the development of new medicines and treatments. There is no argument at all here between the Opposition and the Government on this. The noble Earl reminded me that I took through legislation in 2002 that set the foundations for what we are now debating. He will recall that I was then arguing for us to use the potential of NHS information to the full. The noble Earl then, supported memorably by the noble Baroness, Lady Cumberlege, was a mite worried, I recall, about patient confidentiality. I think, however, that we reached a broad consensus that this is information to be brought together and used, but alongside safeguards that have public confidence. This is simply the issue that is before us at the moment.
Under the extension of the scheme, the Health and Social Care Information Centre can require GPs to upload patient data in an identifiable form from every GP practice in England. This will be linked to the Hospital Episode Statistics and other data sets. The information centre is a body corporate that can require a health and social care body to provide information—including confidential information. That is all well and good. The problem is that the centre and NHS England have botched its implementation, so much so that the scheme had to be withdrawn, originally for six months until the autumn, but my understanding is that the chief executive of the NHS, in evidence to the Health Select Committee, said that that date no longer applied. Perhaps the noble Earl could, when he winds up, comment on that.
My own view is that this is a dead duck. The Government will not be in a position to enable the scheme to go ahead any time before the election because so much public confidence has been lost. This is not surprising. Clearly, the information centre and NHS England took an inadequate approach in their public communications effort and there was a lack of effectiveness and accountability. It is clear that there are concerns about whether such information can be kept confidential in practice, and there is a worry that pseudonymised data could, in certain circumstances, be manipulated to identify a particular patient. There have also been concerns, referred to by my noble friend, about inappropriate use for commercial reasons, such as by insurance companies. I make a big distinction here: I would want the pharmaceutical industry to be able to use that information in research and development. That is absolutely legitimate.
There is also concern about general practitioners and their approach. Before the decision was made to suspend the scheme, there were worrying signs that a number of GP practices would not co-operate or would advise their patients to opt out of the system. It is important to recognise that we will automatically be part of the system as patients unless we opt out. Again, I agree with that principle. It is the only way to operate it. However, I am not convinced about having to go to my GP, if I can get an appointment, which is quite arguable at the moment, and having to talk to my GP—or, even worse, the receptionist—to say that I want to opt out of the scheme. There are real concerns about this system. Unless the GP body as a whole is confident that it is going to run with this, it will be destroyed because so many people will be encouraged to opt out that it will not achieve what it is meant to achieve.
I agree with the Royal Statistical Society which argues that we need a robust response to restore public confidence. Of course, I welcome the changes that the Government have made as a result of debates in the other place and in your Lordships’ House. The question, however, is: do they go far enough to restore public confidence? In my view, they do not. The Government have to make the bold statement that the system cannot be allowed to run under the people who are running it at the moment. They have lost people’s confidence. I cannot put this across strongly enough to the Minister: if you talk to organisations that know about the subject, you find that they are clear that they now do not have confidence in the people who are running the system.
That is why the Motion of the noble Lord, Lord Owen, is so important. He is basically saying that we need an external body that is independent and can give total oversight to the scheme. I support my noble friend’s amendment as well. I agree that it would be better in primary legislation than secondary, but there is no harm in having some secondary legislation to back up what we may agree in your Lordships’ House today.
In the Commons, the Government introduced amendments regarding the use of the term “promotion of health” for the purposes of the dissemination of information. Of course, “the promotion of health” could be a very open-ended definition. There was some fear in the other place that commercial companies—say, food and drink companies—could argue that they needed information for a public health campaign. My Amendment 45D seeks to provide reassurance by asking for regulations to be laid that are explicit about the circumstances in which information concerning the promotion of health can be used.
In supporting my own amendment, I say again to the Minister that there is no disagreement whatever about the importance of care.data, about the need for it to be successful or about the huge benefit to our country if it becomes successful. Success, though, is not guaranteed, and at the moment I believe it is unlikely unless the Government make changes. I hope that the House and the Minister will be sympathetic to these amendments.
Lord Patel (CB)
My Lords, I will speak very briefly. I will not repeat everything that has been said but I support what was said by the noble Lord, Lord Turnberg, particularly about the use of data for biomedical and other medical research. I have been involved on several occasions with perinatal epidemiological research, and such data are vital for that. There is no doubt that we need to be certain that core data will be available for research purposes.
I had not thought that “the promotion of health” might be construed as applying to the food industry; I had interpreted the phrase to mean epidemiological and public health research. However, if the interpretation includes the promotion of health by the food industry, then of course I support it absolutely.
I would be content to have this in secondary legislation at this stage, as the noble Lord, Lord Hunt, mentioned. However, there is no doubt that the way in which the issue has been handled by Public Health England has lost confidence. It could have been handled better, and I hope that Public Health England has learnt lessons from it.
Earl Howe
My Lords, this has been a very fruitful and excellent debate. I thank all noble Lords for their contributions. Before I address the amendments in the names of the noble Lords, Lord Hunt, Lord Turnberg and Lord Owen, I hope it will be thought to be in order for me to cover some of the questions that have been raised by noble Lords.
I start with the issues raised by the noble Lord, Lord Patel, who asked me a series of questions. First, he asked about the “one strike and you’re out” intention to which I referred. We believe that this will be a criterion that the Confidentiality Advisory Group, the CAG, will take into account in its advice to the HSCIC on the dissemination of data that might be used to identify an individual, so there is already scope for flexibility and common sense within this provision. We anticipate that the transparency of the information centre’s decisions to release data, which is provided for in the 2012 Act, would provide further safeguards and reassurances that a “one strike and you’re out” rule was being used appropriately—so there is flexibility. This is one matter on which NHS England in particular will want assurance as the engagement exercise proceeds, as will Ministers.
The noble Lord asked about accredited safe havens. I can commit that the Government will consult on proposals to introduce regulations before bringing forward any new regulations that would enable greater access to data for commissioning purposes, for example through accredited safe havens. As affirmative regulations, any such changes would be subject to debate in both Houses. Will personal identifiers be excluded from the collection? The information centre will of course need identifiers in order to be able to link health and care data from different settings. That is vital if it is to become the source of linked data that all sides seem to desire. Of course, this would be with the protections set out in the 2012 Act, to ensure that the information centre could release information that could be used to identify individual patients and service users only where there is a legal basis for it to do so.
The noble Lord, Lord Patel, also asked about effective links to the patient records standards board, to define the content of patient records. Following the department’s recent review of informatics governance arrangements, it has proposed a committee that will focus specifically on information standards: the so-called SCCI. That committee has oversight of the operational framework and supporting infrastructure to enable the appraisal and approval of information standards and collection across health and care systems in England. The committee will be the mechanism by which the patient records standards board will be able to engage with the delivery community and the wider system, in order to define and gain approval for the content of patient records.
The noble Lord, Lord Patel, suggested that there should be straightforward mechanisms for the personal opt-out. NHS England’s extension period and engagement processes do allow space and time for fuller listening, engagement and debate on that vital programme. As part of the process, I understand that a wide range of stakeholders—including the BMA, medConfidential, Macmillan and indeed the noble Lord, Lord Turnberg—are invited to regular advisory group meetings with the NHS England team. Those processes will be key to helping work through how best to provide reassurance and trust in the care.data programme, not least on how best to ensure that the opt-out process will work in practice and can be clearly communicated and understood by both GPs and patients.
The noble Lord asked whether I would assure the House that no changes to the law would be made to provide for access by commissioners to this kind of data without consultation. I can give that assurance. I can commit that we will consult on proposals to introduce regulations, as I have already mentioned.
The noble Lord asked whether I could say anything about secure data labs or fume boxes for handling data. Yes, I can say a little. I understand that the information centre is working to see how best it can implement this kind of technology. It is tremendously encouraging and could offer real potential benefit from the wealth of information held by the information centre without putting people’s confidentiality at risk. That is the potential benefit.
My noble friend Lady Brinton asked about the extraction of musculoskeletal data from GP records. I understand that NHS England and the information centre are working to ensure that musculoskeletal data will be included in the GP extraction.
The noble Lord, Lord Hunt, suggested that patients should not have to go to their GP to opt out—a point that he has made to me on more than one occasion in the past. This is mostly a matter for NHS England, but GPs, as data controllers, have legal responsibilities under the Data Protection Act for ensuring that all patients are aware of how their information is being used and shared. That does not relate just to care.data but to any use of data for wider purposes. They also have professional and moral objectives to ensure that their patients are informed about the use of their data.
Lord Hunt of Kings Heath
I do not want to delay the House and I am grateful to the noble Earl, but he will know that there is a widespread concern about the quality of GP practices in some parts of the country. The first report of the chief inspector of primary care within CQC contained some hair-raising concerns. The idea that one of those GPs will be responsible for protecting data in those circumstances fills me with gloom and despair. Clearly, something will go wrong. If this ever gets off the ground, which I doubt in current circumstances, something will go wrong and the whole thing will collapse again.
Earl Howe
At the same time, if anyone is going to come up with a better solution, now is the time. I have not heard one. In all seriousness, however, all GPs are well aware of the duty of patient confidentiality. I have never met a GP who has not been aware of that and conscientious about it.
The noble Earl, Lord Erroll, took us to the subject of the proposed European general data protection regulation, which is of considerable concern to the Government. We believe that clinical research is already highly regulated in the UK, so that the interests of privacy are effectively balanced against the value to the public that the research will deliver. The data protection proposals will, as I am sure he is aware, be subject to the co-decision of the European Parliament, the Council of the European Union and the 28 member states. Officials from the Department of Health are working closely with the Ministry of Justice, which leads on the negotiations with the EU on the UK's behalf, ensuring that stakeholders are engaged on key issues such as consent, the use of pseudonymised data, and when the legitimate interests of data controllers can be applied in order to process personal data.
We have also flagged up our concerns with MEPs on specific issues, including the narrowing of the exemption from consent generally and in relation to a rigid reliance on consent or pseudonymous data in order to process data. We strongly agree that we need to take a very firm position on research within the Council and are resisting all changes that would make the use of health data for research more problematic.
I turn now to the amendments themselves. In doing so, I not only thank the noble Lords who spoke to them, but particularly thank my noble friends Lord Lester, Lord Ribeiro and Lady Brinton for their supportive comments about the Government’s amendments and the Government’s position generally.
Amendments 45E and 45F would place Dame Fiona Caldicott’s independent advisory panel on information governance on a statutory footing to provide advice on information governance across the health and care system. It would require the Secretary of State and NHS England to have regard to its advice when making directions to the Health and Social Care Information Centre under Section 254(1) of the 2012 Act. The Secretary of State would also be required to have regard to its advice when making regulations to establish an accreditation scheme for private sector information providers. The amendment would also revoke directions made to the information centre by NHS England in 2013 to implement the care.data programme and to establish data services for commissioners.
Let me say immediately that we are sympathetic to the desire to see the oversight panel placed on a statutory footing. In an area as complex and important as information governance, it is essential that we have a source of clear, authoritative advice, available to all parts of the health and care system, which creates the right conditions for informed judgments to be made on the use of information, and on decisions to share or not to share. When the Secretary of State asked Dame Fiona Caldicott to chair the Independent Information Governance Oversight Panel, it was in recognition of her extensive knowledge and experience in this area. I agree with the noble Lord, Lord Turnberg, that Dame Fiona is uniquely well placed to lead the panel in providing strong, visible leadership to the health and care sector. It is our clear intention that the panel be best supported to do this. My department continues to work closely with Dame Fiona to ensure that the panel is equipped to deliver the role it has been charged with performing.
There may well be merit in establishing the panel in law and giving legal force to its advice on data sharing. I strongly feel, however, that on this important matter, so crucial to people’s privacy and confidentiality, to the safe and efficient operation of the health and care system, and to the research agenda, it is vital that we ensure the system of oversight, scrutiny and advice is robust and coherent. I undertake that we will explore with Dame Fiona Caldicott and all interested parties how best to achieve this, which may include using existing legal powers to establish an independent committee able to advise on data-sharing matters. Dame Fiona Caldicott has confirmed that she would explore options on existing legal powers to establish an independent committee and has noted the importance of considering further and clarifying the functions of the panel before doing so. I hope that those statements, as far as they go—and they are intended to be helpful—will reassure the noble Lord, Lord Owen, and other noble Lords.
I turn now to the directions made to the HSCIC by NHS England in 2013, covering the establishment of data services for commissioners and the implementation of the care.data programme, which would be revoked by this amendment. These directions, inter alia, describe the intended operation of the patient opt-out processes in the event that a patient objects to his or her information being shared. A key focus of NHS England’s engagement activity is to ensure that the opt-out process is implemented in a way that reflects the outcome of the listening exercise, and this will need to be reflected in the new directions to the HSCIC. As there will be new directions, it is not necessary and would be inappropriate to use primary legislation to revoke the current directions.
With those assurances and with a commitment to ensure that the oversight panel is supported to deliver its objectives—including a commitment to explore using existing legal powers to establish an independent committee to advise on data sharing—I hope that the noble Lord will see fit to withdraw his amendment.
It may be helpful to address Amendments 45C and 45D together as they cover very similar ground and, I believe, have similar intent. Amendment 45C would narrow the purposes for which the information centre may disseminate anonymised and certain other information under its general dissemination power. Government Amendment 45 provides that the information centre may disseminate information under its general dissemination power only for the purposes of the provision of health care or adult social care, or for the promotion of health. This amendment would replace the latter of these purposes with “biomedical and health research”, with the effect of curtailing dissemination for any other health promotion purpose. Amendment 45D seeks to define the health promotion purposes for which the HSCIC may share anonymised and certain other information under its general dissemination power in regulations.
I understand the concerns raised by some noble Lords that government Amendment 45 would allow commercial companies—including fast food and tobacco companies, for example—to access information under this provision for commercial gain. I hope I can offer reassurance that the scope of this provision will enable us to tap the potential of the wealth of data available for research, while explicitly preventing the use of such data for purposes that will not promote health.
National Health Service Commissioning Board and Clinical Commissioning Groups (Responsibilities and Standing Rules) (Amendment) (No. 2) Regulations 2014
Lord Hunt of Kings Heath Excerpts(9 years, 12 months ago)
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Lord Hunt of Kings Heath
That this House regrets that the National Health Service Commissioning Board and Clinical Commissioning Groups (Responsibilities and Standing Rules) (Amendment) (No. 2) Regulations 2014 create arrangements for the management of services for very rare conditions that are much more fragmented than those in place prior to the Health and Social Care Act 2012; and further regrets that the process by which services for rare and very rare conditions are considered by the Prescribed Specialised Services Advisory Groups and NHS England for commissioning nationally are unclear and lacking in openness and transparency. (SI 2014/452)
Lord Hunt of Kings Heath (Lab)
My Lords, I am grateful to have the opportunity to debate services for very rare conditions. The House has long had an interest in those rare conditions and, indeed, in specialised services more generally. During our debates on the Health and Social Care Bill in 2012, we had extensive discussions about how to protect specialised services. Of course, the funding of those services is at the moment the subject of much debate because of the overspending under the auspices of NHS England. That clearly emphasises some of the problems arising because of the changes brought about by the Health and Social Care Act 2012.
Rare diseases are more of a feature of healthcare in the United Kingdom than many people think. Indeed, I understand that there are reckoned to be about 6,000 such diseases, and it is calculated that 6% of the population have such a rare disease, but each separate disease can affect fewer than 500 people. Those diseases can often involve some of the most vulnerable patients; given the small patient numbers and clinical complexity involved, it can be difficult to plan and manage. I understand that work has shown that four in 10 patients with a rare disease report difficulty in getting a correct diagnosis and then face similar challenges with obtaining suitable treatment.
Prior to the 2012 Act, these services were commissioned by a single national specialised commissioning team, subject to approval by Ministers on advice from the Advisory Group for National Specialised Services. That single commissioning team could draw on advice from the advisory group’s broad multidisciplinary membership to ensure high-quality service developing. The advisory group itself benefited from the bespoke ethical decision-making framework appropriate to considerations of products and services for such small patient populations.
Under the new system, responsibility for highly specialised services has been fragmented in a number of ways. Services are planned by an advisory group within NHS England called the rare diseases advisory group, while new highly specialist technologies are due to be developed and evaluated by NICE under a new methodology currently under development. Separately, the prescribed specialised services advisory group advises Ministers which services to instruct NHS England to commission, including new highly specialised services, such as in the statutory instrument that we debate this afternoon.
Apart from the complexity of these new arrangements, a number of problems have been identified by the Specialised Healthcare Alliance. First, the separation of these complex and interrelated functions between different national agencies risks the loss of efficiency and expertise in planning highly specialised services. As an example, links between NICE and NHS England would need to be extraordinarily close given that many highly specialised services are heavily dependent on high-cost, low-volume drugs.
Further, changes to the commissioning of these services present additional causes of concern. Rather than retaining a single national commissioning team to manage relationships with providers of highly specialised care across the country, delivery is now delegated, I understand, through NHS England’s four regional offices, with contracts held by the 10 area teams with responsibility for specialised commissioning which have providers on their patch. The alliance has expressed concern that cohesive oversight of these services is likely to be undermined in the process and may even introduce a greater degree of clinical risk. The efficiency of the arrangements, moving from one national to 15 different teams with a greater or lesser involvement, also seems highly debateable. As an example, where access to a service across the country is dependent on only three or four providers, problems at one will have an immediate consequence on the others as well as on patient referrals.
The prescribed specialised services advisory group advises Ministers on changes to the scope of specialised services to be prescribed in regulations for direct commissioning by NHS England. Under the terms of the 2012 Act, Ministers prescribe services for NHS England to commission directly, including specialised services, while all the other non-prescribed activity falls to clinical commissioning groups to commission for their local populations. In prescribing a service as specialised, four factors in the Health and Social Care Act 2012 are taken into account: the number of individuals who require provision of the service; the cost of providing the service or facility; the number of persons able to provide the service or facility; and the financial implications for clinical commissioning groups if they were required to commission the services or facility themselves. Ministers receive advice from the advisory group hosted within the Department of Health to inform such changes. However, this has not been at all transparent. Indeed, in its first year of operation, the advisory group was hidden from public view. It was not until 2 May 2014 that the first details of its membership, decision-making processes and recommendations were published. A few members of the alliance have campaigned to secure inclusion of their services as specialised services but were taken by surprise by the publication of this statutory instrument as they did not know that the advisory group had issued a recommendation to Ministers.
The noble Earl may have good news for us about the publication of a report on this matter either today or in the past few days. As it reached me by e-mail this morning, I have not had time to read it, and it is certainly not available in the Printed Paper Office. That is a pretty poor do if we were meant to have it in time for this debate. It is very important that this work is transparent. I hope the noble Earl can give us more assurance on that this afternoon.
Will the noble Earl respond to the evidence given by the NHS England chief executive to the Commons Select Committee on 29 April, in which Mr Simon Stevens suggested that the scope for specialised services had been overextended and needed to be reviewed? The noble Earl will know that the overspend by NHS England is causing great concern in the health service not only because it suggests that NHS England has lost control over the commissioning of specialised services but because the resources have had to be taken from other parts of the health service. Clearly, this position is not sustainable. I would be grateful if the noble Earl would respond to that question.
Lord Hunt of Kings Heath
My Lords, first, I thank the noble Earl for his response, and the noble Baronesses, Lady Brinton and Lady Thomas, and the noble Lord, Lord Walton, for taking part in the debate. I say to the noble Baroness, Lady Brinton, that of course the Motion was drafted well before the publication of the report. In fact, I received notification of the report only this morning. She seems to have got hold of it before me. Obviously it is helpful to have the report, which I have no doubt we will study, but I hope that this will be the start of an engagement between the advisory group and Parliament, and I hope that the advisory group will offer an open meeting for parliamentarians in the near future where we could discuss these matters with it.
The noble Lord, Lord Walton, was absolutely right to remind us of the increasing importance of ensuring that we have appropriate mechanisms for providing services and funding for these very rare diseases, particularly as technology advances and given the likelihood of orphan drugs being required more in the future.
I had hoped that I might identify a way to fund some of these services, but the Minister has told me that the money has perhaps been discounted and is already in the system. I say to him, however, that the low uptake by the NHS of innovative new medicines is a major problem. Alongside the issue of AstraZeneca, we have to persuade and cajole the NHS that it has to change its approach to new medicines. My own experience is that increases in staffing, in units and in medical equipment are all regarded as a good thing but that an increase in the drugs budget is seen per se as a bad thing. This, frankly, is nonsensical given what many drugs can bring to the public. The fact is that we have a hugely innovative R&D and pharmaceutical industry in this country which we should be very proud of, but the NHS has a lamentable record in investing in the output of that R&D industry. This is a very serious issue from the point of view both of patients and of our continued success—one hopes—as a country in attracting that R&D investment in the future. My understanding is that, in research and clinical trials in the future, unless we are able to compare innovative new drugs with what would in many countries be the normal drug usage, we will find it even more difficult to have clinical drugs started in this country. This is a very serious issue and we have collectively to tackle it.
I note what was said by the noble Baroness, Lady Thomas, who made some very powerful points. The noble Earl, Lord Howe, believes that the current system is not fragmented in the way that I described. Obviously, we will have to see whether this proves to be the case in the future, but there is a risk, with four regional and 10 area teams, of pretty widespread inconsistency within those teams and areas. We need to keep that under very close review.
I am very grateful to the alliance for its briefing and the work that it does. I wonder whether Ministers would be prepared to meet the alliance to discuss our debate and the advisory group’s report. I have already asked whether the advisory group would be prepared to meet parliamentarians. I am grateful to the Minister for expanding on the comments made by Simon Stevens to the Health Select Committee about the overspend on specialised commissioning. NHS England is not very visible in the Palace of Westminster and it should become more so. Before it makes pretty fundamental decisions on specialised commissioning, it would be very good if it was again to agree to meet parliamentarians to discuss it. This has been an excellent debate. I beg leave to withdraw my Motion.
Abortion
Lord Hunt of Kings Heath Excerpts(10 years, 1 month ago)
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Lord Hunt of Kings Heath (Lab)
My Lords, this is an important debate. I share the concerns of the noble Baroness, Lady Knight, about the Assisted Dying Bill, but I do not accept the link she has made between that Bill and the 1967 Abortion Act. I speak as someone who has always supported that Act, but I find termination on the grounds of gender to be absolutely abhorrent, and I hope the noble Earl can clear up the issue of the interpretation of the 1967 Act. Can he say whether he agrees with the interpretation given by the noble and learned Lord, Lord Mackay of Clashfern? As I understand it, the essence of what he said is that the 1967 Act permits abortions only under the specific circumstances as set out in that Act. Therefore, it does not allow for an abortion to be performed on the basis of not wanting a child of a specific gender. It would be very helpful if the noble Earl could really clarify that point.
I also want to ask about the decision of the independent prosecutors in the case mentioned by the noble Baroness. I well understand that the Attorney-General does not want to second-guess the decisions of the independent prosecutors and I have read the subsequent explanation of the Director of Public Prosecutions, but would like the noble Earl to clarify whether he thinks, in the light of that, that any further clarification is required. We have heard about the pre-signing of HSA1 forms. Can the noble Earl confirm that, following the investigation by the Care Quality Commission, those organisations that were found to be pre-signing those forms were ordered to stop this practice? Is he confident that providers are now complying with the Abortion Act?
Finally, does he agree that we need to challenge discriminatory attitudes towards women and girls and should not be frightened of that challenge? Will the Minister say what efforts the Government will make on education in this area and specifically among some communities in this country?
NHS: Mental Health Funding
Lord Hunt of Kings Heath Excerpts(10 years, 1 month ago)
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Lord Hunt of Kings Heath
To ask Her Majesty’s Government what action they are taking to ensure that NHS England funds mental health in line with the requirement for parity of esteem.
Lord Hunt of Kings Heath (Lab)
My Lords, I beg leave to ask the Question standing in my name on the Order Paper, and refer noble Lords to my health interests.
The Parliamentary Under-Secretary of State, Department of Health (Earl Howe) (Con)
My Lords, our aim is to ensure that mental health has equal priority with physical health. We have made this an objective of NHS England. The mandate of NHS England makes it clear that everyone who needs it should have timely access to the best available treatment, including in mental health services. We enshrined in law the equal status of mental and physical health in the Health and Social Care Act 2012.
Lord Hunt of Kings Heath
My Lords, that is all well and good, but the noble Earl knows that NHS England has not carried out the instructions in the mandate, and in the tariff for this year it has discriminated in the funding of mental health services. In our most recent debate on this, the noble Earl said that we should not worry about it because clinical commissioning groups will be heavily monitored. But the Government have no power to instruct clinical commissioning groups to make up for this rather perverse decision by NHS England. So I ask the noble Earl: will he not intervene and tell NHS England to reverse this funding policy?
Earl Howe
My Lords, as the noble Lord will know, the tariff for mental health services is determined locally. Having said that, we are clear that it is important that these tariffs and the priority given to mental health are scrutinised very carefully indeed, which is why my honourable friend the Minister of State for Care and Support has said he will do just that in the case of every single clinical commissioning group. If he determines that the plans are unsatisfactory, we as Ministers will work with NHS England, which we do regularly, to ensure that there is indeed that progress to parity of esteem that we all want to see throughout the country.
Health: Folic Acid Fortification
Lord Hunt of Kings Heath Excerpts(10 years, 1 month ago)
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Earl Howe
My Lords, I note the noble Lord’s helpful suggestion but it is important that the Government take a decision on folic acid that is right for our own population, rather than anyone else’s. It is worth remembering that no other country in the European Union has taken the decision to fortify flour with folic acid. We need to do this by evaluating the risks and the benefits, as I said, based on the most up-to-date data we can get.
Lord Hunt of Kings Heath (Lab)
My Lords, we know that 50 countries have introduced folic acid. On the fluoridation question, the legislation is for local people and local authorities to decide, so there is a clear difference. It is clear that the Government have already briefed out that they will agree to this. We are going off on a very long Easter Recess. Joy would be unconfined if the noble Earl told us now what we know the Government have agreed to. Why does he not come clean on it?