(13 years, 1 month ago)
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“(c) the promotion and improvement of the health of all disabled people, including those with co-morbidities”
Baroness Anelay of St Johns
My Lords, I take this opportunity again to remind colleagues that as they are leaving the Chamber they should, in courtesy, not walk in front of the noble Lord, Lord Rix, as they are doing at the moment, but should leave by the other exit. It is considered discourteous to interrupt a speaker.
Lord Rix
Thank you. Five of the six amendments that I have tabled to the Bill have been grouped together. I welcome the opportunity to raise some specific concerns about the Government’s health reforms in relation to learning disability. I should also like to thank the Minister, who recently met the noble Lord, Lord Wigley, the noble Baroness, Lady Hollins, and me, along with representatives from the Royal Mencap Society, of which I am president, to discuss our concerns in more detail.
As I made clear during my contribution at Second Reading, people with learning disabilities already have worse health outcomes than the rest of the general population. Mencap’s 2007 report, Death by Indifference, highlighted the neglect that was faced by six people who were treated in the NHS, leading to their deaths, which were entirely avoidable. Since then, many parents have approached Mencap to recount the indifference, prejudice and ignorance that is displayed towards people with a learning disability when being treated by the NHS. The purpose of the various amendments that I have tabled to the Bill is to address this problem.
First, Amendment 13 would ensure that the Secretary of State for Health has a clear duty to improve the quality of services for people with a disability. This is a prerequisite if the health inequalities to which I have previously referred are to be reduced and entirely removed as soon as possible. We hear a great deal from the Government about the importance of local decision-making, empowering patients and more opportunities for clinicians to make their input. In principle, I do not object to these intentions but they must not be at the cost of removing the accountability of the Secretary of State. By placing a duty on the Secretary of State to improve the quality of services for disabled people, I hope greater priority will be given in government to making this happen and seeing improvements on the ground.
My second amendment, Amendment 81, aims to ensure that health services for those with the most complex needs are commissioned by the NHS Commissioning Board. I am concerned that, since the numbers of those with the most complex needs, particularly those with profound and multiple learning disabilities, are likely to be relatively small, clinical commissioning groups may not commission those services that are deemed to be insignificant. We already know that the commissioning of services for people with complex needs by primary care trusts has been patchy. It is questionable whether commissioning led by clinical commissioning groups alone will lead to any great improvement on this issue. My amendment would ensure that the NHS Commissioning Board has oversight in this area, including the co-ordination and commissioning of services and facilities for this very specialist group of disabled people.
The third amendment tabled in my name, Amendment 117, concerns the importance of collecting data on the experiences and outcomes of all patients in the NHS. Where a patient has a disability, it would also ensure a breakdown of disability by impairment type. This will provide a bank of information that could be disseminated and used to inform future NHS decision-making to ensure that it accurately reflects the expectations of those it seeks to serve. It would also help to ensure that clinical commissioning groups, the NHS Commissioning Board and the Secretary of State are more accountable for their decisions and better placed to improve such decisions. Without the collection of this data, including the impairment type for disability, it will be difficult accurately to assess what is happening to people with a learning disability and other disabled people within NHS treatment.
Baroness Hollins
My Lords, I support the amendments of my noble friend Lord Rix. He made reference to people with learning disabilities and in particular expressed concern about people with complex needs. I should like to say a little more about people with learning disabilities who have challenging behaviour. It is estimated that as many as 40 per cent of people with learning disabilities may present behaviours that are challenging to family and other carers. These behaviours can be so intense and frequent as to have a major impact on the quality of life of the individual and their families.
People who present severe behavioural challenges are among the most disadvantaged and marginalised individuals in our society and are at much greater risk of exclusion, institutionalisation, deprivation, physical harm, abuse, misdiagnosis and exposure to ineffective interventions. Their carers are subject to physical harm, psychological ill-health, physical ill-health and to an increased burden of care and financial consequences. It can also have an impact on their employment prospects and quality of life.
Commissioners, policymakers and providers all face escalating costs and risk undermining national policy. Providers face high staff sickness and turnover, service breakdown, scandals and exposés such as the recent “Panorama” programme about Winterbourne View in Bristol and previous scandals in recent years in Cornwall and Merton and Sutton.
Back in 1993, Professor Jim Mansell emphasised the need for commissioners of health and social care to work together to provide good support and services for this group of individuals. He recommended locally based, individualised packages of care. He suggested that the environments where people are cared for should be skilled and capable of maintaining support for the long term. He revised his report in 2007 for the Department of Health and made the same points because insufficient progress had been made. He and others, such as the Challenging Behaviour Foundation, have made it very clear that large institutional provision is not the answer, yet many people with learning disabilities have care packages commissioned within such institutional care, mainly in the independent sector, funded by the NHS and by social services. These placements are often far from home. They have little guarantee of high-quality, skilled care and are vulnerable to the kind of restrictive practices that have been revealed time and again in a variety of high profile exposés. This care is often very high cost, as well as not delivering good outcomes for people.
A recent publication entitled There Is an Alternative, published by the Association for Supported Living, makes a strong argument for local, community-based support, saying that it is more successful and cheaper than specialist in-patient provision. However, for that to happen requires vision, commitment and a will to make it happen. It cannot be achieved without the will of effective local commissioners, a will that must be expressed in decisions to invest in local community-based services, rather than to farm out problem cases to expensive out-of-area placements—what in the world of learning disability we know as the “crisis Friday afternoon very expensive mistaken placement”. Most successful supported living services have their roots in commissioners' decisions to invest in that service model, acting on sound demographic knowledge of the communities they serve and the needs and wishes of the people with learning disabilities who live within them.
I am sure that health and well-being boards will have an important role in thinking about the needs of their population with learning disabilities in that way. However, it is clear that there need to be good lines of accountability in future. There is a worry that local clinical commissioning groups will not be able to commission adequately when specialist services are needed. They will have to be able to address a comprehensive local strategy that can deliver early intervention, timely and skilled professional expertise and support, competent and high-quality providers of individualised support and services, flexible crisis intervention services, such as psychological therapies, which are very underdeveloped for that group of people, and psychiatry, which can build the support required for each individual—real individualised care. The numbers of individuals are relatively small but they can be very high cost if the services are not planned well.
It is essential that the needs of this group of individuals are specifically considered within the new commissioning arrangements. I always say that if we can get it right for people with learning disabilities and complex needs, we can get it right for everybody else. There may be an argument for looking to the National Commissioning Board to take this overall responsibility without compromising the need to find ways to ensure local responsibility—the delivery of creative, flexible and local solutions to meet the needs of individuals and families within their own communities. This is quite a challenge, which is why I have gone to such lengths to explain the problem faced by this complex group of people. I ask the Minister to comment on how such services might be commissioned in the future.
Lord Newton of Braintree
My Lords, perhaps I may intervene briefly in support of the general thrust of the amendments without necessarily saying that I agree with every dot and comma. I also agree, not least, with the remarks of the noble Baroness, Lady Hollins. The noble Lord, Lord Rix, and I have known each other for quite a long while in the field of learning disabilities and, indeed, through my role many years ago as Minister with responsibility for disabled people, so I am happy to lend a sympathetic word on this point.
I ought to declare an interest in that several times I have told the House that I am the chair of a mental health trust. Of course, mental health trusts often deal with learning disabilities as well, as indeed does the health trust that I chair, although happily last year it transferred most of its residents on old-style campuses to Suffolk County Council for a more complete version of genuine living in the community and community care, and I am rather pleased that we did that.
We need to recognise that, although there are overlaps—the word “co-morbidities” is used in one of the amendments—between mental illness and learning disability, they are not the same, and we need to make sure that we take particular and appropriate account of the needs of learning disabilities in all this. I hope that the Minister will be able to assure us that that will be the case.
Lord Beecham
My Lords, I begin by congratulating the noble Lord, Lord Rix, who has been such an outstanding champion of people with disabilities, alongside my noble friend Lord Morris of Manchester. The two of them have been in the vanguard of public policy-making and of informing and involving people in this crucial issue.
The noble Lords, Lord Rix and Lord Newton, both implied that learning disability is something of an overlooked condition. The noble Lord, Lord Rix, referred to the degree of prejudice and ignorance surrounding learning disability, which sometimes leads to the rather disgraceful treatment of individuals who suffer from that complaint, as we read from time to time. It is therefore right that they should be included in this broad request for the Secretary of State to have a duty to promote the equality of and improvement in treatment for people with all kinds of disability.
The noble Lord, Lord Rix, and to a degree the noble Baroness, Lady Hollins, questioned whether this might be rather too much of an issue for local commissioning groups to undertake. I am not so sure about that, and think that this area needs exploring. After all, the general practitioners, who will be a significant part of clinical commissioning groups locally, are the first line of service providers for people with a disability, and I am not clear that a commissioning body operating nationally would be the appropriate mechanism to promote such commissioning. Something like the shortly-to-disappear SHAs might have been, and it is not clear—at any rate, to me—the extent to which the national Commissioning Board will be operating at that sub-national level in the future. However, at all events, somebody has to assume an overarching responsibility, and local authority health scrutiny committees should certainly be ensuring that this group is not neglected in their statutory responsibility of reviewing the efficacy of local arrangements and local provision.
The noble Lord referred to the important issue of data collection in Amendments 117 and 143 and of drawing on the experience of people with the condition. I think that he would probably accept my suggestion that both of the amendments would be slightly improved by reference to carers, as their experiences should also be shared and brought into the picture. The amendments suffer a slight defect which I believe the noble Baroness, Lady Hollins, implicitly touched on. The amendments relate very much to the clinical and medical side of the conditions with which the amendments are concerned, but, of course, there are other agencies and other services that are important and must play a part in improving life for people with any of the range of conditions covered by the amendments.
The Earl of Listowel
My Lords, my noble friend Lord Rix’s amendment on children with complex needs and the special services that they need reminds me of a visit that I made a few years ago to a service run by the National Society for the Prevention of Cruelty to Children. This service was for a small and unpopular group of children who sexually harm other children and the manager said that it was very difficult to determine who should fund it. The primary care trust did not want to fund it. However, it was a vital service which intervened early in children's lives and stopped them from continuing their harmful behaviour towards other children into adulthood. The matter is relevant to this debate because the victims of sexual harm are often children with learning disabilities, and the children who perpetrate sexual harm are also more likely to come from the learning disabled group. We need to be reassured that services like that will find a home in the new arrangements. I look for reassurance from the Minister that that will be the case.
Earl Howe
My Lords, I am sure that all Members of the Committee will join me in expressing our admiration for the long record of the noble Lord, Lord Rix, in championing the cause of disability rights. They will have had a great deal of sympathy with what he and others have said in this debate.
The Government are committed to improving the lives of people with learning disabilities and the lives of their carers and families. Since we last had a debate of this kind in the context of a health Bill, the legislative backdrop has changed in a very material and important way. I am referring, of course, to the Equality Act 2010. The public sector equality duty in Section 149 of that Act requires public bodies to consider the impact of policies and decisions on particular groups across the protected characteristics. It also requires public bodies to have due regard to the need to eliminate discrimination and to advance equality of opportunity. This general public sector equality duty came into force in April 2011. This means that public bodies such as commissioners, local authorities, health trusts, other providers of NHS services and regulators need to understand how different groups are affected by their policies and practices across all protected characteristics, including disability, and ensure that they routinely use equality data in order to have due regard in their decisions. Furthermore, public authorities need to have a clear evidence base from which they can determine and set clear and measurable equality objectives in line with their specific duties in regulations made under Section 153 of the Act.
Sections 29 and 39 of the Equality Act 2010 prohibit discrimination against disabled persons, whether direct or indirect, by NHS employers, providers of health services and persons exercising other NHS functions. There are, in addition, important duties that apply to the NHS in relation to disability discrimination and reasonable adjustments which public bodies must make. Duties to make reasonable adjustments in relation to employment or the provision of services are set out in Sections 20, 29(7) and 39(5) of the Equality Act. The purpose of these duties is to ensure that employers and service providers have a positive and proactive duty to take steps to remove or prevent obstacles which may place a disabled person at a disadvantage in comparison to a non-disabled person.
This Bill plays its own part in helping to ensure that the care system delivers these commitments and improvements. It introduces new duties in relation to quality and fairness. It creates underpinning legislation for the NHS outcomes framework, which links to the public health and social care frameworks, and that will shine a light on the experiences of all patients and service users, including disabled people. The Bill brings clarity to quality through NICE quality standards that describe high-quality care along a pathway addressing the key issue of co-morbidities. The changes to the regulatory framework give Monitor a role in Clause 59 in relation to improvement in quality and fairness, as well as efficiency. The Secretary of State’s annual report will be closely linked to the objectives that he sets for the NHS Commissioning Board and Public Health England. These are likely to evolve over time to meet changing health needs.
Because the new duties relating to quality and the reduction of inequalities apply to a number of bodies in the system, it would seem logical to include these aspects in the annual report. I can give an assurance that we have every expectation that the improvement of quality and the reduction of inequalities will be key reporting themes in the Secretary of State’s annual report.
Our starting point is that people with a learning disability are people first. They have the right to lead their lives like any others, with the same opportunities and responsibilities, and the same dignity and respect. There is a clear policy framework towards people with learning disabilities, including those with profound and multiple learning disabilities and behaviour that challenges. Valuing People, published in 2001, set out the previous Government’s commitment to improving the lives of people with learning disabilities, and set out the core principles of rights, independence, choice and inclusion. In 2009, that Government reaffirmed these principles in Valuing People Now. The coalition Government have also endorsed them. Key areas include improving outcomes for people with learning disabilities and their family carers around health, housing and employment, in particular enabling people to live healthier and for longer, including by improving access to high-quality healthcare, helping people to secure and stay in employment and supporting people to live in their own homes, including closing NHS campuses.
The first NHS outcomes framework signalled a number of important areas that needed to be included in it in the future. One of those areas was to understand and measure good outcomes for people with learning disabilities. The existing data and data collections do not easily allow outcomes for people with disabilities, including learning disabilities, to be identified. To help rectify this my right honourable friend Andrew Lansley launched the innovation in outcomes competition earlier this year to try to help to fill these gaps. I am delighted that we received some extremely helpful suggestions for how we might incorporate outcomes for people with learning disabilities in future iterations of the framework.
In addition to the NHS outcomes framework, the mandate is a mechanism through which it may be possible to draw attention to the importance of improving the quality of services and outcomes for people with learning disabilities. Improving outcomes for people with learning disabilities and their family carers is about making change happen at a local level for all people. It needs the full commitment of the full range of service providers and agencies across all sectors that need to work in partnership to plan, review and commission strategically.
As was well emphasised by the noble Lord, Lord Beecham, local authorities and health bodies are required to develop a joint strategic needs assessment and to commission services to address those needs. Joint commissioning with local authorities in relation to care and support for people with learning disabilities will help to support them better. We expect services delivering support to people with learning disabilities to act to ensure they are fully compliant with the law, especially the Equality Act 2010.
I turn now to the noble Lord's amendment to Clause 12. This clause allows the Secretary of State to make regulations requiring the NHS Commissioning Board to commission certain services that it would be less appropriate for clinical commissioning groups to commission. One of the reasons for giving GPs within clinical commissioning groups responsibility for commissioning NHS services locally is their unique position as the gateway by which patients access the majority of NHS services. However, there are some services that patients do not access via their GP, and there are others, for patients with rare conditions which are high cost and where clinical expertise needs to be concentrated, that require them to be commissioned and organised separately. For those services we believe that it would be better for the NHS Commissioning Board to take the lead. Dental services and services for members of the Armed Forces and for persons detained in prison or other accommodation of a prescribed description were included in the Bill because there was a clear policy intention for the board to commission the majority of services in these areas, and they could be easily defined in broad terms in primary legislation. This was confirmed by the consultation process on the implementation of the NHS White Paper and in the subsequent Command Paper.
Clause 12 provides that regulations may require the board to commission such other services or facilities as the Secretary of State considers it appropriate for the board rather than clinical commissioning groups to commission. The intention is that this would include specialised services for very rare or rare conditions where different arrangements currently apply because of their low volume and high cost. Currently, these services are either commissioned nationally by NHS London or regionally by primary care trusts working through collaborative commissioning arrangements with their specialised commissioning groups. In deciding what services it would be appropriate for the Commissioning Board to commission directly, the Secretary of State would be required to take into account a number of factors. These four factors are set out in Clause 12.
For services such as those for people with profound and multiple learning disabilities and people with complex needs whose behaviour challenges services, it is expected that some services will be considered specialised and therefore should be commissioned nationally. This is the specific question posed to me by the noble Baroness, Lady Hollins. Some services will not be considered specialised and should be commissioned by clinical commissioning groups working with local authorities.
The services included in the regulations could change over time as new services develop, existing specialised services become more common, and so on. The point here is that there is flexibility for the Secretary of State to take account of these changing factors and to require the board through regulations to commission certain services in a way that primary legislation does not.
The Earl of Listowel
My Lords, I thank the Minister for his helpful response, particularly with regard to specialist services for children. I was interested in his point that the advent of the clinical advisory group will help the Secretary of State in making these decisions. I should be grateful to him if he could provide an assurance that, as the name suggests, this clinical advisory group will have a strong basis of expertise, that its membership will have long practice in the fields of interest and that there will be transparency as regards the members of the group and their experience. Perhaps that is too much to ask, but having discussed these issues with him in the past over the Cassel Hospital specialist service for families with complex needs, it seems that everyone would benefit from being reassured that the people who advise the Secretary of State have a depth of knowledge in the areas and specialist fields for which they are responsible.
Earl Howe
I can reassure the noble Earl that the clinical advisory group is taking and welcomes expert advice from all quarters. It is taking its time to get this right. It is too soon to announce any conclusions from its work, but I have no doubt in my mind that the noble Earl’s concerns will be addressed fully.
Lord Rix
My Lords, after that long, complex reply from the Minister, I shall have to read Hansard from top to bottom tomorrow. He referred to many Acts, which have yet to prove their efficacy in some instances, and to all manner of directives, which I could not write down and take note of at this moment. However, I thank him for his comprehensive response. When I read Hansard, I hope that it will prove to be more than helpful.
I also thank my noble friend Lord Listowel, and my noble friend Lady Hollins, whose expert opinions and advice are both personal and professional. I should also like to say, possibly at great risk because I am surrounded by doctors and nurses, that I fear that it is only people such as my noble friend Lady Hollins who have really worked at learning disability and that students who come out of St George’s know more about learning disability than perhaps many other medical students and young doctors who come out of other medical schools. Therefore, if clinicians are to be made to guide the commissioning boards et cetera on the work that has to be done for learning and disabled people, I have to say that I fear that some clinicians are rather short of experience in this area. I say this with due deference to my noble friends who are all around me at the moment and I hope that they will not clobber me when I get into the tea room after the next amendment.
I also thank the noble Lords, Lord Beecham and Lord Newton. I was very glad to have support from both sides of the House. The noble Lord, Lord Newton, and I have discussed learning disability for many years. I was very glad to hear from the noble Lord, Lord Beecham, who is new to me, and to have his support. Without further ado, I look forward to reading Hansard tomorrow and to consulting my colleagues, my noble friends Lady Hollins and Lord Wigley, and all the people at Mencap and other devoted charities. I beg leave to withdraw the amendment.
Lord Patel
Lord Patel
My Lords, I shall speak to all the amendments tabled in my name, but before I do so I should like to thank all noble Lords who have joined their names to these amendments—and of course there are amendments tabled in their names as well. Given the size and complexity of the Bill and what it covers, my amendments may well appear to address minor issues, but on reading the Bill in detail—I have read it line by line—it occurred to me that there are some fundamental omissions, even if they concern only a single word. I must ask why, when the Bill is supposed to implement a reorganisation of the health service that will deliver world-class health outcomes, such important issues have been missed out.
I shall address each amendment tabled in my name, and take Amendment 15 first. Clause 2 will insert a new clause covering the Secretary of State’s, “Duty as to improvement in quality of services”. New subsection (2) states:
“In discharging the duty under subsection (1) the Secretary of State must, in particular, act with a view to securing continuous improvement in the outcomes”.
It makes no sense to me if the word “health” is not inserted before the word “outcomes”. We are talking about the health outcomes that are achieved from the provision of services. Equally, new subsection (4) states:
“In discharging the duty under subsection (1), the Secretary of State must have regard to the quality standards prepared by NICE”.
I wonder why the word “clinical” is not before “quality standards” so as to emphasise that these have to be clinical quality standards. I am well aware that NICE produces technology assessments that are often referred to as technology standards, and that it writes standards in other areas, but they are all for the purpose of refining clinical care or developing eventual clinical quality standards that deliver clinical care.
Perhaps I may say with some humility that I am aware of what clinical quality standards are all about, having for five years had the job of writing them. I am also familiar with some of the clinical quality standards written by organisations that we would regard as being the best in the world, such as the MD Anderson Cancer Center in Houston, Johns Hopkins in Baltimore, Harvard, the Mayo Clinic and others, including some Australian institutions. They all refer to quality standards as being clinical quality standards, because they are what matter in the delivery of care. Apart from that, those are the standards that the Commissioning Board will use to build packages of currency that Monitor will then use to produce tariffs, so if they are not clinical standards, what are they? In my view, it is clinical standards that will deliver the outcomes we seek, so why not call them clinical standards?
Amendment 107 refers to Clause 20, which covers the duties and functions of the Commissioning Board. Proposed new Section 13E is entitled, “Duty as to improvement in quality of services”. Subsection (3), which I seek to amend, states:
“The outcomes relevant for the purposes of subsection (2) include, in particular, outcomes which show—
(a) the effectiveness of the services,
(b) the safety of the services, and
(c) the quality of the experience undergone by patients”.
That is the definition of quality standards that we are using, but it does not mention delivering better outcomes for patients. Why are these quality standards that will deliver better outcomes for patients not the standards that we want? If we do, why do we not put them in the Bill? It will alter the culture of people who work in the health service when they read language and words such as “clinical standards” and “health outcomes” for individuals or in practice. My noble friend Lord Warner tabled a similar amendment to which he will no doubt speak.
Lord Warner
My Lords, I support the amendments of the noble Lord, Lord Patel. I draw the Minister’s attention to the noble Lord’s great expertise, of which I am sure he is aware, in the area of setting standards for good clinical outcomes. He has done this in Scotland and the Committee should take careful note of the amendments that he has proposed and which I strongly support. I shall not go over again the ground that the noble Lord has covered, but he has made a compelling case for tidying up the wording of the 2006 Act in the areas that he has suggested.
Amendment 109 is in my name and that of the noble Lord. The words that it would add to new Section 13E(3) are very important to patients. Good and speedy access to services is essential to good outcomes, but it is an issue with which the Conservative Party has played fast and loose in its efforts to distance itself from targets. In doing so, it may have made itself popular with the NHS but it has rather lost sight of the importance that access to services has for patients in terms of their view of the way in which the NHS treats them.
Good and speedy access is critical to good outcomes, and nowhere is that more apparent than in cancer services, which is why a lot of effort was put in by the previous Government, with experts in cancer, to devise the targets that were produced in this area. I am not trying to make a party political broadcast on the success of Labour’s access targets, although the temptation is enormous, but to bring out the key difference in approach to access between many parts of the Chamber and the Government Front Bench. I suspect that when the Minister comes to reply, I will get a little lesson on the lines that access is a process and what we should concentrate on is outcomes. I suspect that his brief will tell us a lot about that particular issue.
I suggest that there is a different way of looking at this. Access is not just a process issue because it incorporates one of the requirements for good outcomes. Of course, no one, least of all me, is suggesting that we should be against trying to define outcomes or measuring performance in achieving those outcomes. Some of us have spent the best part of our working lives trying to deal with the subject of outcomes in a whole range of public services. But we usually struggle, as I suspect this Government will, to define the outcome appropriately and to find an appropriate measure. Often we have to wait an indecently long time for the outcome to become apparent. We are often forced back onto proxies, which usually look much more like outputs than outcomes. Performance measures on access are a good example, not least because without speedy access patients are unlikely to get good outcomes.
It is also important that we have speedy access in order to ensure that diagnosis takes place, particularly in areas such as cancer. That is why targets were used by the previous Government to drive improvements to access. One reason why they got involved in the issue of targets and access was the great public concern in the 1990s about the length of time people had to wait before they could get access to services. I am not making a party political point, but trying to get across to the Benches opposite that patients take this very seriously. They judge the NHS to a great extent on whether they can get access to services in a timely way. It is worth bearing in mind that the previous Government's targets were actually less demanding than some of the views that patients had on how long they should wait to get services. Patients were much more demanding than the NHS targets that the previous Government set for the NHS in this area.
A Nuffield Trust comparative study of access targets in north-east England and the lack of them in Scotland revealed that the English experience was better for patients both in terms of speedier access and of efficiency and cost. It also showed that targets were indeed often unpopular with NHS staff. But if we are to make a choice between popularity with NHS staff and popularity with patients, I know which side of that argument I would prefer to be on.
I know that the Government have begun to retreat, to some extent, on the issue of abolition of targets, but we need to keep speedy access to services high on the NHS agenda, particularly as the NHS moves through a period of considerable challenge. Our five little words in Amendment 109 would help to do that, and I hope that the noble Earl will feel able to accept them.
Baroness Bakewell
I support Amendment 18B, which is also included under the heading,
“Duty as to improvement in quality of services”,
of the proposed new Section 1A to the 2006 Act.
I speak on behalf of particular interest group: the old. I declare an interest. I was for 18 months the government-appointed Voice of Older People. The interest group for which I speak is large and growing larger. Some 10 million people are now over 65 in the UK. In 2034, 23 per cent of the population will be over 65 of whom 3.5 million will be of the older old—over 85. That age, 85, is significant to the amendment. The amendment is to new Section 1A(3), proposed in Clause 2, dealing with the Secretary of State’s duty to seek continuous improvement in the outcomes, and it lists the relevant outcomes to be measured: effectiveness, safety and quality. We have already heard from the noble Lord, Lord Patel, and others about the important amendments to that.
Amendment 18B seeks to add a fourth consideration—and a rather odd one—which is that,
“These outcomes should not exclude sections of the population due to age”.
That phrase sits uneasily here—it would sit uneasily anywhere—because it is not of a kind like any other. However, it is important for the many people who will be numbered in the data on which outcomes are based—or, rather, not listed in the data.
The NHS Outcomes Framework 2011/12, which sets out outcomes and corresponding indicators, states:
“Where indicators are included which can be compared internationally, levels of ambition will work towards the goal of achieving outcomes which are among the best in the world”—
a laudable aim indeed. However, the document goes on later to state:
“Current data collections are limited in the extent to which this is possible … We recognise that there are certain groups or areas which the framework may not effectively capture at present, simply because the data and data collections available do not allow outcomes for these groups to be identified”.
In the document’s charts that show the overarching indicators, it is clear that many of the indicators stop at the age of 75. The indicators specify the mortality rates from cardiovascular disease, respiratory disease and liver disease. Thus, the data on deaths from such causes over the age of 75 are not monitored under the outcomes framework, despite the fact that life expectancy is far higher than 75.
It is also clear that many of the data are under development. I understand that, and there is work to be done. As the document states:
“This is the first NHS Outcomes Framework and … it is intended to signal the direction of travel for the NHS”.
The direction of travel for the population of this country is to have a much higher percentage of older old people. We already have more than 12,000 centenarians. Throughout debates on this Bill, I will be pressing for considerations of age to be written specifically into its provisions.
Why do we need to be so explicit? Surely we are all citizens, we are all taxpayers and, in the end, we are all patients. That is of course the reasonable case, but that is not how care is experienced. A recent report commissioned by the Department of Health concluded:
“Evidence of the under-investigation and under-treatment of older people in cancer care, cardiology and stroke is so widespread and strong that, even taking into account confounding factors such as frailty, co-morbidity and polypharmacy we must conclude that ageist attitudes are having an effect on overall investigation and treatment levels”.
That was in a report published for the Department of Health. To give just a simple anecdotal example from broader practice, although the risk of breast cancer increases with age, the general-practice reminders that are sent out to women to invite them to mammograms stop once a woman reaches the age of 70.
My amendment seeks to make clear, and even overemphasise, that all outcomes include all sections of the population. Prevailing attitudes to the old require that to be spelled out in the Bill.
Lord Kakkar
My Lords, I support Amendments 15 and 19, in the name of the noble Lord, Lord Patel, to which I have added my name. In so doing, I speak as a practising clinician and I wish to emphasise the wise point made by the noble Lord, Lord Patel, about the need to ensure that the Bill describes important facets of what needs to be achieved to improve culture within the NHS.
At Oral Questions today, we heard a discussion about hydration policy. Clearly, in a healthcare system, it is important that the culture is appropriate. Therefore, an emphasis on specifying “health outcomes” and “clinical quality standards” is also important because that will drive a cultural emphasis on the fact that improvement of health is the purpose of the Bill. The failure specifically to recognise, on page 2 in line 17, the issue of outcomes being specifically those of health, and in line 27 the quality standards to be specifically those of clinical quality, is potentially an important failure that should be recognised. I hope that in responding to this debate the Minister can confirm that with the emphasis on health outcomes and clinical quality standards, the purpose of the Bill will be emphasised in the language used in the Bill.
Baroness Barker
I follow on from the speech made by the noble Lord, Lord Kakkar, by raising a question for the noble Lord, Lord Patel. Does he accept that if his amendments were accepted, for some of us that would run the risk of medicalisation of long-term conditions? I agree with him when he says that there needs to be a change in culture—culture is all important. What this Bill seeks to do is to break down a lot of the barriers between health and social care so that the health and well-being, in the broadest sense, of individuals, are improved. That is an enormously important step forward, not least because much of the preventive work needs to be done with the population, in terms of lifestyle and so on, to decrease admissions to the NHS. That is what has traditionally been carried out not by healthcare but by other agencies.
I throw the noble Lord a somewhat philosophical question. If his amendment were to be accepted, would that be an acceptance by the medical profession that health and social care need to work in a far more integrated fashion than they have ever done before to achieve what he would term health and clinical outcomes, to which I would add well-being outcomes?
Lord Patel
My Lords, there is no conflict when I use the word “clinical” in recognising that it would encompass the totality of clinical and social care. The problem will arise that while the evidence exists to be able to write clinical quality standards, the evidence to write social standards is lacking, and we may have to develop those. That is why a distinction is made between the two. In terms of immediate outcomes for patients that are seen for medical care, the clinical quality standards will make the difference. That does not mean that I do not recognise clinical and well-being together—and I think that all doctors would recognise that. It is not medicalisation that I am after by using the term “clinically”.
Lord Hunt of Kings Heath
My Lords, this has been an interesting series of amendments. The noble Lord, Lord Patel, made a very important point about the influence that legislators can have in drafting legislation on the culture of the NHS. He speaks with great experience because of his work in Scotland on the development of clinical standards, and I am sure he is right to emphasise the words “health” and “clinical” in adding to our understanding of what we seek from the National Health Service.
The point raised by the noble Baroness, Lady Barker, is very interesting. This is meant to be a health and social care Bill, although there is very little about social care in it. Indeed, the only provisions ranging around social care are bad provisions. Remarkably, we are proposing to abolish the General Social Care Council, which ought to be an uplifter of standards among social workers. I give notice that I intend to thoroughly oppose these provisions and place the regulation of social workers into a health body. I look forward to the support of the noble Baroness, Lady Barker, on that when we come to it. I would have thought that the way through is either to add well-being to this part of the Bill or to say “health, clinical and other outcomes” to meet the valid point raised by noble Baroness.
My noble friend Lady Bakewell is very keen in her Amendment 18B to ensure that in securing the outcomes set out in the Bill, we,
“should not exclude sections of the population”,
on grounds of age. We look to the Minister to give us some reassurance on my noble friend’s point about the overarching indicators used extensively in the department and the health service, which go up to only the age of 75. It is not good enough to say that the data are still under development and therefore we will not worry about statistics on the over-75s. One would like to think that those indicators will be revised to embrace people over 75.
Amendment 16A, which is my own amendment, relates to the efficiency of the service. It seeks to add “efficiency” to the criteria that need to be considered. I would be interested to know from the noble Earl why efficiency is not mentioned in line 23 on page 2 of the Bill. My argument would be that a measurement of a service’s effectiveness may be of only limited value. One example might be the fraught question of new drugs and treatment being developed by industry and marketed indirectly to patients, for example through the sponsorship of charities that promote the case for the provision of new treatments in the NHS, and there is a strong case to make those treatments improve the effectiveness, safety and quality of experience. However, if you do not also have to consider efficiency, is there not a risk that you will not look at value for money or productivity and, in the end, not give a rounded analysis of a particular new treatment or technology?
Amendment 19, in the name of the noble Lord, Lord Patel, deals with the standards prepared by NICE under Clause 231. I hope that the noble Earl can clarify the status of NICE standards and guidelines. I have a later amendment on this matter, as do my noble friend Lord Warner and the noble Lord, Lord Patel. We have been concerned by suggestions that the Government are seeking to downplay the role of NICE and the statutory nature of its guidance on technology appraisals. I would be very grateful if the noble Earl could reassure me on that.
I remind the noble Earl that NICE was established because of the traditional delay in the health service when a treatment has been proven to be cost-efficient and effective. There was always reckoned to be a long delay from the time when it was proven to be cost-effective, efficient and clinically effective to the time when it generally available in the National Health Service. NICE guidance was designed to speed up the adoption of such proven new treatments, technologies and drugs. I am concerned about any suggestion of returning to the bad old ways when it was up to each clinical commissioning group simply to decide on a new technology and the group not having to follow the guidance set out in the NICE technology appraisals—if that is what they are called; I think we have probably moved on from that terminology. We will of course return to that later on in the Bill, but some assurance would be welcome.
I turn to my noble friend Lord Warner’s Amendment 109. I never understood the Opposition’s opposition to waiting time targets in the NHS. I remind the Minister that when his Government last left office they had the patients’ charter, which had a waiting time target of 18 months that they did not achieve. We got it down to 18 weeks, which had a hugely beneficial impact on patients. There is no doubt, if you look at regular polling, that the NHS was in very good condition in 2010 because to all intents and purposes the dreadful waiting that had been such a product of the NHS over many decades had been radically reduced.
We know that there is a sense in the health service that the Government are no longer worried about waiting times. I have no doubt whatever that if the pressure is taken off, waiting times will start to rise again. That might suit the Government because of the funding issues that they are confronting the NHS with, and it would certainly suit the private sector, which we know does well out of long NHS waiting times, but it will do patients no good at all. I do not know how far my noble friend Lord Warner intends to take this, either now or at a later stage, but it is important that we say in the Bill that we are concerned about the speed of access to services.
Earl Howe
My Lords, I am grateful to the noble Lord, Lord Patel, and other noble Lords for introducing this group of amendments. I agree with the noble Lord, Lord Hunt, that this has been an excellent debate with a shared commitment to ensuring that quality sits at the heart of the Bill. I find that heartening. I recognise the long experience of the noble Lord, Lord Patel, in defining what quality looks like.
The grouping revolves around the definition of the duty of quality and how the term “quality” is addressed throughout the Bill. As was discussed in earlier debates, the duty of quality enshrined in the Bill is derived from the report of the noble Lord, Lord Darzi, High Quality Care for All, published in 2008. The noble Lord set out that quality could truly happen only when three different factors were present: safety, effectiveness and patient experience. That definition was widely welcomed at the time and over the past three years has become valued across the NHS.
The definition did not come out of the blue. The noble Lord’s review was produced with the NHS, with patients, clinicians and managers, using the strategic visions developed in each of the 10 strategic health authorities. Its definition of quality—effectiveness, experience, safety—has survived even the electoral cycle. Indeed, one of our first priorities as a Government when we came to power was to build on the noble Lord’s work. We did this through publishing a consultation paper and then following it up with the first NHS outcomes framework, published in December last year. Respondents to the consultation on the outcomes framework were highly supportive of the continued use of the definition of quality and the fact that the framework sought to measure patient-reported outcomes and patient experience as well as clinical outcomes.
The question we have to ask ourselves about the amendments is simple: does the definition need to change? My view is clear: we should stick with the original definition. However well intentioned the amendments are, there would be risks attached to them.
I shall start with Amendments 19, 110, 134, 179 and 181. The intention, if I understand it correctly, is to specify that the duty of quality should be restricted to clinical matters in order to ensure a focus on clinical quality and outcomes for patients. I understand the noble Lord’s arguments but my fear is that these amendments would have the effect of narrowing the duty of quality and losing the integrated approach that it embodies. Let us consider this with regard to quality standards, covered in Clause 231. Quality standards, as I have already said, bring clarity to quality, providing definitive and authoritative statements of high quality care that are based on the evidence of what works best. That idea opens up the opportunity for quality standards to cover an integrated care package, from public health interventions in primary care to rehabilitation and long-term support in social care, thereby supporting the integration of health and social care services. I fear that we would lose this integrated approach if we were to restrict the Secretary of State’s obligation to looking only at clinical standards.
Lord Winston
I listened carefully to the Minister’s answers to and rebuttals of many of these amendments, which he made with cogent force, and I found it difficult to disagree with them. However, in the case of the amendment of the noble Baroness, Lady Bakewell, I have a problem. The issue of age is such a special case that there is a strong reason to consider writing her amendment into the Bill at this stage, because it is clear from what has happened historically and recently that aged patients are in a particularly difficult situation in an ageing community. They are often not communicated with and left unable to feed themselves, and people are not there to feed them, and so on. The Minister knows all this very well. Is there not a serious case for a caring Government to think seriously about the issues that the noble Baroness has raised?
Earl Howe
Of course there is, and I am grateful to the noble Lord. We are anxious to ensure, however, that any measures that we put in place in the outcomes framework are robust in terms of their verifiability. As I have said, I completely agree with the need for good data that have to underpin any system of accountability. I strongly feel that the Bill takes a significant step in the right direction. The NHS Information Centre will be the powerhouse for improving data in the NHS. It will look at how we can improve data for all age groups, not just the over-75s. I take on board what the noble Lord said. If I can add to what I have said, I should be happy to do so in writing.
I shall cover briefly the questions from the noble Lord, Lord Hunt, about NICE. NICE is a body for which we have the highest regard. In the Bill, we are widening its duties and placing it on a much firmer statutory footing. I hope that that in itself will indicate to the noble Lord that, far from downplaying the role of NICE, we want to do the opposite. We are giving it responsibility for defining excellence in social care and for producing a library of quality standards, which it has already started to do. In connection with technology appraisals, we see it continuing to have a very important role. What the noble Lord may have heard on the grapevine, if I can put it that way, related to our plans for value-based pricing of medicines. If we succeed in defining a good system—a good framework—for value-based pricing, the role of NICE will inevitably shift somewhat, because it will be asked a slightly different question from that which it is asked at the moment, but it will retain an absolutely central role, particularly in the pharmacoeconomic evaluation of new medicines.
The noble Lord asked me about the concern that clinical commissioning groups would, as it were, be able to take their own decisions and perhaps disregard NICE guidance. We have made absolutely clear that the funding direction associated with NICE-approved medicines will continue, not only up to the end of 2013, which is when the current pharmaceutical price regulation scheme comes to an end, but thereafter in the new world of value-based pricing.
I agree with the spirit of all the amendments, but I hope that noble Lords will accept from me that they are either not needed or would have an unintended and retrograde effect, which I have tried to outline. I hope that, with that, noble Lords will feel able not to press the amendments.
Lord Patel
My Lords, I thank the Minister for his detailed comments and all noble Lords who took part, although some of them did not quite understand the meaning of my amendments. None the less, it was never my intention to have a narrow definition of “clinical”, and I accept what the noble Baroness, Lady Barker, said: that it might give the impression that this is narrowly defined to medical standards. It is not; it takes into account both the well-being of the patient and, beyond that, rehabilitation and even social care, if we can define the standard.
My intention was never to press the amendments, but to try to highlight the issue that standards that are written are important if they are written with a view to focusing on patient outcomes. The phrase “clinical standards” tends to do that, and other standards have to incorporate that. If there was one benefit of this debate, it was that the noble Earl had to define the quality standards that NICE would be expected to write, which incorporates the patient journey of care from access to rehabilitation. That is exactly what I was hoping to achieve. By the way, I am familiar with NICE, having been involved at its inception and having written the paper that established it. Standards, whether they are quality standards of access or others, must focus on what gives a better outcome to the patient. On that basis, I am pleased to withdraw the amendment.
Baroness Bakewell
“( ) These outcomes should not exclude sections of the population due to age.”
Baroness Bakewell
My Lords, I thank the noble Earl for his thoughtful consideration of my amendment. Because this is so impending a situation, it has to be taken on board for the future. The noble Earl spoke about having data that were robust in terms of verifiability and about evidence for the over-75s being harder to come by. However, life expectancy in this country is 84 for women and 79 for men, so there are data somewhere. I reiterate that there is a growing groundswell of concern, evident in newspapers when the story goes wrong, about the National Health Service failing older people, and I am sure that the Minister is as keen as I am to see that end. I beg to move.
Earl Howe
My Lords, I completely understand the points that the noble Baroness has made and I am sure that there is general sympathy in this Committee for the issues that have been aired through successive reports. I refer not just to the Care Quality Commission’s findings but to those of the ombudsman relating to care for the elderly in both the NHS and care home settings. The noble Baroness should be in no doubt that this is very high on the Government’s list of priorities but, as she recognised herself, there are particular obstacles that we have to overcome before we can move forward in the way that she has indicated and that we all want.