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.
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 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
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.