Health and Social Care Bill

Lord Rix Excerpts

Tuesday 13th March 2012 Lords Chamber

[Baroness Greengross]

My Lords, if I am a very frail, vulnerable, sick person in need of support or care, and I go into a residential home, my human rights will be protected. In this case, that means the right to dignity, respect, and privacy if I am having intimate care. If I have exactly the same needs and exactly the same services provided for me in my own home, my human rights are not protected. But I am the same person. My human rights now depend on whether I am down the road in a residential home or have the same services in my own home. That cannot be right. This amendment is designed to close the loophole in the law that allows this. It means that if a public body has arranged or contracted the service, it is a public function within the meaning of Section 6(3)(b) of the Human Rights Act, so it brings certainty that I will get my human rights protected. These are not controversial rights—it is just decent care.

We know that almost half a million older people receive essential care in their own homes, commissioned by their local authority in England, excluding the other devolved areas. Approximately 84 per cent of these people lack the protection of the Human Rights Act because their care is provided, as we now know, by private or third sector organisations. We received compelling evidence of the extent of human rights breaches in home care settings in the findings of the Equality and Human Rights Commission’s formal inquiry into the human rights of older people receiving home care. As the lead commissioner on ageing, I was part of that inquiry.

This amendment is supported by many organisations. Among them are Age UK, the British Institute for Human Rights, Disability Rights UK, the Equality and Diversity Forum, Justice, Liberty, Mencap, the Scottish Human Rights Commission and the Northern Ireland Human Rights Commission. In its report Implementation of the Right of Disabled People to Independent Living, published on 1 March 2012, the Joint Committee on Human Rights recommended that the Health and Social Care Bill should be amended in this way.

My understanding, however, is that while the Government have no argument with the view that the Human Rights Act should apply to private and third sector organisations providing publicly commissioned home care, it seems that they consider that the law provides this coverage already and that this amendment is therefore unnecessary. I share the commission’s view that private providers of services, under arrangements made with the relevant statutory bodies under the NHS Act as amended by the Bill, will not necessarily continue to be carrying out a function of a public nature. The Equality and Human Rights Commission feels that the Department of Health’s analysis of current case law is a bit overoptimistic. Were this question to be determined by a court, the outcome could not be predicted with any certainty.

I want to thank the Minister for giving a huge amount of his time and consideration to these issues. I know that he is wholeheartedly in support of the principles behind my amendment. It is plain that he has an undoubted commitment to avoiding human rights abuses in health and care settings. However, the fact remains that any relevant assurances that he might give us, while very welcome, must fall short of providing the urgent legal clarity about the scope of the Act that I believe to be very important. They would not provide service users with clear legal redress for human rights abuses or breaches, or give providers an immediate legal incentive to apply human rights standards to service delivery.

I am not suggesting that legislative provisions are the only guarantee of human rights protection, but I would argue that they are an important part of the solution. I recognise that, going forward, the Government’s policy agenda could—and, I hope, will—provide opportunities to embed more effectively a human rights approach in health and social care. Seeking change in service culture and practice of services is very important. However, while these policy opportunities are very worthy of consideration, closing this legal loophole would put down a clear legal benchmark that would positively help to build cultural change in the health and social care sector. Such policies that the Government now have, however well-intentioned, are not a substitute for clear legal obligations under the Human Rights Act. Those would give individuals the right of redress against service providers for human rights breaches.

The Government might also have reservations that making express reference to human rights in a health context could cast doubt on other areas beyond health or social care where public services are provided by private bodies. However, I do not agree that a reference solely in health and social care would cast such doubts on other policy areas. Thinking about the operation of such a reference in reverse, it would be difficult to see how a specific reference in justice or education legislation could reasonably affect social care or healthcare.

In closing, I must reiterate that I feel that the law is not certain. In my view, the current legal position is evidently unsatisfactory. There may good arguments to support the view that providers should consider themselves bound by the Act and the duty. There are also legal arguments against that position. There is no way to predict what view a court might adopt. Support for this amendment will clarify beyond doubt the fact that a person commissioned to provide home-based social care or healthcare is performing a public function with the responsibilities that are within such a function and within the meaning of the Human Rights Act and the Equality Act. I hope that the Minister will find it possible to support this amendment. I beg to move.

[Lord Rix]

My Lords, I wish to support Amendment 292A, tabled by my noble friend Lady Greengross. As I am sure your Lordships will appreciate, I approach this issue from the perspective of people with a learning disability and would argue that the provisions of the Human Rights Act should be universally applied and not dependent as to whether an individual receives personal care in a residential setting or in their own home. Such a disparity is both unfair and unjustified, and it is right that we take the necessary steps to clarify matters.

For example, let me remind your Lordships of the appalling abuse highlighted by the BBC’s “Panorama” programme in May of last year. Winterbourne View, near Bristol, was a privately owned assessment and treatment centre where residents with a learning disability were subject to an horrendous culture of ongoing bullying combined with physical and psychological abuse.

I make reference to the abuse at Winterbourne View because, following an amendment in 2008 to the then Health and Social Care Bill, which is now the Act, the law was changed to ensure that care homes in the private and third sectors, when providing care that is publicly commissioned, were within the scope of the Human Rights Act. This was the correct step to take and ensures that all legislation, regulations and guidance regarding personal care which is publicly commissioned and provided for in residential settings is underpinned by the tenets of the Human Rights Act.

For those who face the ongoing consequences of prejudice and discrimination every day of their lives—such as people with a learning disability—the Human Rights Act can have benefits that go well beyond the preconceptions of those who are eager to dismiss it as a dangerous irrelevance. However, while the individuals concerned who suffered abuse in Winterbourne View or any other residential setting are able to turn to the Human Rights Act in seeking recourse for what occurred, if a similar type of abuse happened while they were receiving publicly funded personal care within the parameters of their own home, it may be assumed by victims, local authorities and others that they would not be able to do so due to the lack of clarity. This is self-evidently a completely unacceptable state of affairs and we should not be willing to tolerate such an absurd inconsistency. I would also add that if the CQC had the resources to undertake a greater number of unannounced inspections in all residential settings, it would be easier to identify abuse at an even earlier stage.

When applying the Human Rights Act the principle question must be, “To what extent has an individual’s human rights been violated?”. It should not be, “Under what type of roof did the alleged abuse take place?”. In my view, abuse is abuse is abuse, and it is as simple as that. Respecting an individual’s human rights should be universally applied and not subject to arbitrary levels of determination, such as the situation in which we currently find ourselves.

The Government claim that the loophole does not exist and so there is no need for the matter to be clarified in the way that the amendment requires. What is not in doubt is that, under the current circumstances, it is explicit under statute that when receiving publicly funded personal care services in residential settings, an individual’s human rights can be upheld via the Human Rights Act. However, when that care is received in their own homes, the situation is much more ambiguous and less certain. Therefore, I remain hopeful that the support of Ministers for this amendment will be willingly and freely given.

[Lord Low of Dalston]

My Lords, I have put my name to this amendment because it seems very clear to me that we do need legislation to clarify the uncertain state of the law relating to the provision of health and social care services commissioned from the private and voluntary sectors. We know how we got to this point. Despite the intention of the then Government that responsibility under the Human Rights Act should generally follow the outsourcing of state functions, in the case of YL v Birmingham City Council the House of Lords held that a private company providing residential care under a contract with a local authority was not carrying out a public function for the purposes of the Human Rights Act. This human rights loophole was closed by Section 145 of the Health and Social Care Act 2008, but only for residential care services. The YL case did not directly deal with the question of health or home care services contracted out by the NHS or local authorities, so neither did the Health and Social Care Act 2008 in seeking to undo the YL decision. Thus there remains a lacuna in the law which needs to be addressed.

During the debates on this Bill in Committee, and in a subsequent letter to Peers, the noble Earl, Lord Howe, raised no objections to the Human Rights Act applying to home care provided by private and third sector organisations. Indeed, his letter maintained that publicly commissioned home care is already covered by the Act.

Similar considerations apply in relation to healthcare, because the current Health and Social Care Bill will mean more independent providers being commissioned to provide NHS services. In correspondence with the Joint Committee on Human Rights, the Government raised no policy objections to the Human Rights Act extending to outsourced NHS services. Indeed, here too the Government have indicated that providing outsourced NHS services already qualifies as a public function under the Human Rights Act, so there is no need for the law to be clarified.

The Equality and Human Rights Commission, after exhaustive legal analysis, has concluded that the matter is by no means so clear-cut. I have a detailed legal briefing here, but your Lordships will be relieved to hear that I do not intend to read it out.

Health and Social Care Bill

Lord Rix Excerpts

Thursday 15th December 2011 Lords Chamber

[Lord Low of Dalston]

My Lords, I rise to move Amendment 317AA and shall also speak to Amendment 317AB, 336B and 336C and 318BA to 318BC, which are in the name of the noble Lord, Lord Whitty.

The Bill contains a number of provisions which relate to the handling of information by various bodies. Amendments 317AA and 317AB relate to HealthWatch England and Amendments 336B and 336C relate to health and well-being boards. Amendments 317AA and 317AB come in Clause 178 and seek to strengthen the safeguards against HealthWatch England publishing information which relates to the private affairs of an individual.

The Bill already contains some safeguards, but I do not believe that they are adequate. Clause 178(4) states that,

“any matter which relates to the private affairs of an individual”

and,

“would or might seriously and prejudicially affect that individual’s interests”,

should be excluded from the reports that HealthWatch England is empowered to produce. But it states that information should be excluded only when it “seriously” prejudices an individual’s interests, not if it prejudices their interests less than seriously—and who decides what is serious and what is prejudicial—and that it should be excluded only “so far as practicable”. It is not clear to me why information that relates to the private affairs of an individual should be published at all. It seems to me that the prohibition should be absolute and that, in Clause 178, proposed new Section 45B(4) should simply read:

“Before publishing a report under subsection (1)(b) or (3), the committee must exclude any matter which relates to the private affairs of an individual”.

That is what Amendments 317AA and 317AB would bring about. Paradoxically, this is a case where no safeguards would be better than the inadequate ones we have in the Bill.

Similarly, health and well-being boards are given wide powers under Clause 196 to request information—powers that are clearly wider than they need to be. As the Bill stands, a health and well-being board can ask a local healthwatch organisation for details of people who have complained or raised concerns about a service and, as the Bill stands, a healthwatch organisation would be obliged to disclose that information. Amendments 336B and 336C would stipulate that no information be requested which would require the disclosure of personal information within the meaning of the Data Protection Act.

The noble Lord, Lord Whitty, will speak in more detail to Amendments 318BA, 318BB and 318BC, which come in Clause 179, but I would like to indicate my support for these amendments. I am aware of concerns that have been raised about the independence of local healthwatch organisations arising from the fact that they will be both funded by and accountable to the local authority. It is explained in paragraph D35 of the integrated impact assessment that this is based on the importance of localism. Paragraph D106 of the integrated impact assessment states:

“There is a risk that tying local HealthWatch into local authorities could reduce their independence and effectiveness”.

So it seems that the imperatives of localism trumped those of independence and effectiveness.

The integrated impact assessment goes on to recognise that the duty on local authorities to fund local healthwatch arrangements may be perceived as giving rise to a conflict of interest for local authorities, given the role of local healthwatch organisations in relation to scrutiny. It is stated that work is under way to map out the concept of independence for local healthwatch organisations, and to use this to promote the arrangements as accountable to local government for performance and to local citizens for the issues raised with commissioners and providers, but we do not know the outcome of this work as yet. The Bill does not provide any detail on the membership of local healthwatch organisations. It is left to regulations to specify who makes appointments to these bodies, and how. It would be extremely helpful if the Minister could give some indication of how this separation of accountabilities, which is evidently envisaged, is to be realised and institutionalised.

In any case, however, the fact that the local authority holds the purse strings remains a risk to the independence of local healthwatch. There is therefore a strong case for local healthwatch organisations not to be funded by the local authority. The argument that the importance of localism requires accountability is not as strong as the need to have effective, independent local services. These amendments would make local healthwatch organisations responsible for their own activities and accountable only to HealthWatch England, rather than the local authority, but I fear the risk from local authority control of the purse strings would still remain.

[Lord Rix]

My Lords, I shall speak to Amendment 324, tabled in my name and those of my noble friends Lord Tenby and Lord Wigley, in this rather Christmas stocking grouping of amendments. This regards the provision of independent advocacy services for people who are in the process of making a complaint against the NHS. This amendment is particularly relevant to the needs of disabled people, including those with a learning disability, and I would like to take this opportunity to declare an interest as president of the Royal Mencap Society.

For those who are unfortunate enough to encounter it, the NHS complaints system is deeply flawed and ineffective. It is complex in its make-up and lengthy during the course of its deliberations. I welcome the Government’s proposal for local authorities to make appropriate provision to support people in the complaints process, through the use of advocacy services. Effective and high-quality advocacy services are of course an essential prerequisite for many families to secure the answers they want and the justice which they really require.

Without this amendment, there is a risk that advocacy support could be started and then abruptly halted some time before any conclusion to the ongoing complaint which has been made. As I have already mentioned, the NHS complaints system is a lengthy and complex process and the level and scope of advocacy support made available by local authorities should reflect this.

I am also aware that in some cases advocacy support services have been denied to families, as the level of support deemed necessary has been regarded as too onerous and burdensome on the provider. This is an unacceptable state of affairs, where people are denied the help they need on the basis that they may need too much help. At a time when families could be dealing with the emotional upheaval and distress of coping with the loss of a loved one, any uncertainty about the level and period of advocacy available to them is, to put it somewhat generously, an unhelpful distraction. This is why I believe it necessary to ensure that advocacy support during the NHS complaints system is not restricted in length and type for those families who need it. This amendment would help to provide such a guarantee.

Funding of Care and Support

Lord Rix Excerpts

Thursday 24th November 2011 Lords Chamber

[Lord Rix]

My Lords, like others I welcome this very important debate and I commend the noble Baroness, Lady Pitkeathley, for affording her fellow Peers the opportunity to discuss this issue at such a timely moment. I also declare a personal interest as president of the Royal Mencap Society, an organisation that is greatly concerned about the current social care situation facing many people with a learning disability across the whole of the United Kingdom. In the context of the recommendations made by both the Law Commission and the Dilnot Commission about the reform of social care, there is clearly a demonstrable need and appetite for a change to the system to be achieved as soon as possible. While Government austerity measures have significantly reduced settlements to local authorities, it is important not to overlook the pre-existing underfunding that the social care system has experienced.

The Government spend around £16 billion per year on the provision of social care support, in comparison with £110 billion on health and £180 billion on welfare. Despite the vast number of individuals who rely on social care support to ensure their independence and dignity, these figures suggest that it has become something of an afterthought which merely succeeds in papering over the numerous cracks in the provision received by some of the most vulnerable members of society. I dare to suggest that extra funding awarded to social care, evenly distributed around the country, would reduce the NHS budget by a similar amount.

Matters are only likely to worsen. The number of people using social care is increasing and, within this demographic, the number of people with a learning disability is expected to increase by almost a third over the next 20 years. This is a group which is often highly reliant on social care support. Indeed, adults with a learning disability constitute 24 per cent of the social care budget, and so it is essential that their needs are met. However, this is increasingly not the case as the upward curve of social care need jousts with the downward spiral of funding per head in the system. Organisations such as Mencap and the Learning Disability Coalition warn that the consequence of this is that effective and appropriate social care provision is often increasingly out of the reach of a growing number of people with a learning disability.

According to recent research conducted by Mencap about local authorities’ eligibility criteria, 83 per cent of councils are only supporting people with critical or substantial needs, an increase of 10 per cent on the previous year. This reflects a wider culture of “tightening” eligibility criteria so that only those with the “greatest needs” are able to receive support, whereas those with milder or more moderate needs, who nevertheless still require social care support, stand to miss out. It indicates that, sadly, the funding situation for social care is worsening. Indeed, only two weeks ago, the courts ruled that plans by the Isle of Wight Council to provide assistance to those with critical needs and only for some people with substantial needs, was unlawful for failing to give due regard under disability legislation, alongside other reasoning. While it is encouraging to see that such action is being curtailed, there is the wider point that some councils feel obliged to make such contentious decisions as a result of the limited social care resources that they have at their disposal.

The real costs of underfunding become all the more quantifiable when individuals are affected. Susie is a 47 year-old adult with a severe learning disability, which means that, for all of her life, she has been the recipient of social care services and was able to attend a day centre five days a week. She was then offered the option of having a personal budget, which she accepted and, on reassessment, the council gave Susie a financial budget which amounted to only one and a half days’ worth of services.

What that case represents is the corner cutting that is happening throughout the country. But this is not a problem without a solution. What it does not require is yet more papering over the cracks. Instead, action is needed to bring about fundamental reform of the whole system in a way that does not shrink from making difficult decisions. It also requires a fundamental overhaul of the various processes, the various duties and the various means of support associated with social care provision.

This would help overcome the current postcode lottery of care that exists throughout the UK and which dictates that people with equal needs can receive wholly different outcomes purely as a result of where they live. Essentially, this brings together the recommendations of both the Law Commission and the Dilnot commission reports. The latter points out that the current system of funding of care and support,

“is not fit for purpose, and has desperately needed reform for many years”,

while the former urges that a wide of social care overhaul is required as:

“There is no single modern statute to which local authorities, service users, carers and others can look to understand whether services can or should be provided”.

While I fully appreciate the limitations of the current natural climate, the Government would do well to consider the wisdom of RH Tawney in the context of the future of social care when he wrote in The Acquisitive Society:

“As long as men are men, a poor society cannot be too poor to find a right order of life, nor a rich society too rich to have need to seek it”.

Health and Social Care Bill

Lord Rix Excerpts

Monday 7th November 2011 Lords Chamber

Moved by

[Lord Rix]

13: Clause 2, page 2, line 16, at end insert—
“(c) the promotion and improvement of the health of all disabled people, including those with co-morbidities”

[Lord Rix]

My Lords, five of the—

[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.

--- Later in debate ---

[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.

Amendment 13 withdrawn.

Health and Social Care Bill

Lord Rix Excerpts

Tuesday 11th October 2011 Lords Chamber

[Lord Rix]

My Lords, before I make my contribution to the debate, it is appropriate that I declare an interest as president of the Royal Mencap Society. In recent years, the NHS has made much progress in how it treats people with a learning disability. However, there remains plenty of scope for further improvement in its performance. It is important to emphasise that my concerns about the content of the Bill should not be interpreted as implying that I have full satisfaction with the status quo: far from it. However, I fear that positive steps that have been made could be undermined as a consequence of the Bill.

As many noble Lords will be aware, Mencap’s interest in campaigning on improving the health chances of people with a learning disability is long-standing—with much reason. Research consistently shows that people with a learning disability still experience worse health outcomes and greater inequalities than the rest of the population. They have a shorter life expectancy and an increased risk of an early death. Their overall level of health is also generally poorer. Yet they find it harder to access the health services that for them are so much more of a necessity.

For example, annual health checks for people with a learning disability are vital. They are carried out by GPs, funded by the Department of Health, and are a recognition that people with a learning disability have additional problems with their general health. Yet latest figures show that in England only one in two such people takes up their right to these annual checks, meaning that more needs to be done to ensure that they access the health services to which they are entitled. This is an area where I am concerned that much of the progress over recent years could be undermined if, during a period of major reorganisation in the NHS, we lose focus on making this a priority.

General practice and the promotion of annual health checks are not the only areas of the NHS where progress has been made, but more needs to be done. Mencap’s groundbreaking report, Death by Indifference, published in 2007, highlighted six premature and totally avoidable deaths of people with a learning disability in the care of the NHS. Your Lordships will recall that, as a consequence of the report, the previous Labour Government established an independent inquiry led by Sir Jonathan Michael, which published a report entitled Healthcare for All. This set out the steps that should be taken to prevent similar avoidable deaths in future.

In 2010, Mencap launched its Getting it Right campaign, which encouraged NHS institutions to sign up to a charter setting out reasonable adjustments that they should make to provide equality of health outcomes for people with a learning disability. The charter included steps such as producing materials in accessible formats, employing learning disability liaison nurses, and improving awareness of learning disability among healthcare staff. These steps, and others, have led to many changes in the way people with a learning disability are treated in the NHS. However, while some progress has been made, too often provision remains geographically dispersed and inconsistent. As the Department of Health's Six Lives: Progress Report, published in 2010, revealed, there continue to be concerns around the poor use of mental capacity legislation and the lack of reasonable adjustments to health services.

This is why I believe the real challenge during a period of change and reform in the NHS is to make sure that where progress has been made in driving up better health outcomes for people with a learning disability, that progress is not lost. This is particularly the case for those with more specialist needs, such as people with profound and multiple learning disabilities—PMLD. There is a great deal of concern about the commissioning of health services used by people with PMLD. The specialist services are often extremely expensive and will not offer the economies of scale that other, more profitable or locally attractive health needs can secure. As the number of people with PMLD is relatively small, what incentives will local clinical commissioning groups have to commission such services? Will other, more popular requests prove to be more appealing? What role will the NHS Commissioning Board play in ensuring that the needs of people with PMLD are not ignored?

As noble Lords will be aware, a key element of the Bill, and a fundamental principle of the Government’s intentions, is the extension and promotion of patient choice in the NHS. However, “choice” can mean different things and has different connotations for different people, with widely different outcomes. Will those with the most persuasive elbows and articulate voices have greater opportunities for choice than those without? How will people with PMLD exercise choice under the new structures? What support for locally run advocacy services will be provided? What safeguards do the Government intend to put in place to ensure that some of the most vulnerable people in society, such as those with PMLD, can have their voices properly heard?

As I have made clear in my speech, too many people with a learning disability continue to face prejudice and discrimination when trying to access equal healthcare, yet their needs are much greater. I therefore ask the Minister how the Bill aims to tackle the health inequalities to which I have just referred.

Mention was made by my noble friend Lord Owen, who regrettably is not in his place, of Enoch Powell when he was Minister of Health. In 1962 I had occasion to visit him to ask him for an increase in NHS services for people with a learning disability. He told me that it was totally unnecessary and that progress had been made. Of course, he was talking arrant nonsense then, and I would hate to see this Bill reverse the progress that has been made on the implementation of high-quality services for people with a learning disability.

With so many speakers clamouring to have their heartfelt concerns about the Bill heard today and tomorrow, I cannot believe that the Minister will be able to satisfy all our demands in his summing up. Therefore, could he possibly afford the time for a further meeting with those of us who are interested in the world of learning disability?

Queen's Speech

Lord Rix Excerpts

Thursday 3rd June 2010 Lords Chamber

[Lord Rix]

My Lords, it was just over 18 years ago that, during the debate on the gracious Speech, I made my maiden speech from this side of your Lordships’ House, from this very Bench, flanked by Lord Allen of Abbeydale and the noble Earl, Lord Snowdon. I must say that the House was somewhat better then than it is today.

I made reference then to the labels—often unacceptable and hurtful—which apply or have applied to people with a learning disability. I was then the chairman of Mencap, but for the past 12 years I have had the honour to be that society's president. I am delighted to report that, during this time, opportunities and quality of life for many people with a learning disability have improved considerably. As an example, the closure of overcrowded, austere and remote institutions—comparable to prisons rather than hospitals—has been particularly welcome, and ensures that more people with a learning disability are no longer hidden away, out of sight and out of mind, but are able to enjoy the benefits of living in their own local communities, making friendships and forming relationships. This is a thoroughly good thing and we must build on this progress.

It would be remiss of me if I did not place on record my personal appreciation of the work of successive Governments and pay tribute to all those who have helped to make this happen. The extent of this progress is reflected in the different tone of language and terminology used with respect to people with a learning disability over this time. At the time of my maiden speech the term “mentally handicapped” was used, but the term “learning disability” is more suitable for the modern day. However, since it can be confused with “learning difficulty”, no doubt the label will change yet again. But in many respects the use of language is the easy part. There is still a great deal more progress to be achieved if the 1.5 million people in our country with a learning disability, and their families and carers, are to be fully empowered and enjoy the opportunities of living independently, along with dignity and respect, and if the scourge of bullying is to be totally eliminated.

I take this opportunity to congratulate all noble Lords who have been appointed to the coalition Government and wish them every success in their new roles. The single biggest challenge facing the coalition Government—reducing the public deficit by reducing public expenditure—also poses a considerable threat to the quality of life experienced by people with a learning disability, their families and carers. I strongly urge the coalition Government to recognise this threat and ensure that people with a learning disability do not become the unintended victims of centrally driven, yet locally delivered, “efficiency” savings. Those who can afford it the least must not be expected to pay the most.

Twenty-two separate Bills were set out in the Queen's Speech, but I shall refer only to those which have the greatest interest from my point of view. The welfare reform Bill aims to simplify the benefits system while increasing incentives to find work. Many people with a learning disability want to enjoy the benefits of going to work and living more independently but, due to ever-present prejudice and discrimination, are unable to do so. Latest government statistics reveal that while 48 per cent of all disabled people are engaged in some form of paid employment, for people with a learning disability this figure is just 10 per cent. Regrettably, this figure has remained at this level for the past 10 years. I seek assurances from the coalition Government that the welfare reform Bill will be used as an opportunity to abolish much of the bureaucracy that prevents people with a learning disability from getting a job and that it will instead provide the support and assistance that will help empower them so that they can have an even greater control over their own lives.

In the area of education, the gracious Speech referred to a couple of Bills: one, the Academies Bill, will introduce legislation to enable more schools to achieve academy status; and the other, the education and children's Bill, will act as a companion piece to the Academies Bill. I recognise the coalition Government's aim of driving up standards and increasing choice in education and the opportunities provided by greater freedom to be more innovative and creative in delivering education on the ground. However, I seek assurances that, as a consequence of these greater freedoms, children with a disability and their parents will also have the opportunity to enjoy the promised benefits and advantages of receiving their education within an academy or a so-called free school. Due to the seven-minute time limit, I have had to cut many of the things that I wished to say about education. However, I am glad to say that the Academies Bill, which is due to have its Second Reading on Monday, has been able to house all the notes that I wished to speak on now.

The final piece of legislation referred to in the gracious Speech on which I wish to comment is the health Bill. The coalition Government's aim is for the voice of patients and the role of doctors to be strengthened in the National Health Service. I welcome the Government's intentions to devolve greater power to patients and hope that this will lead to a reduction in the health inequalities often faced by people with a learning disability when they attempt to access healthcare in the NHS. Mencap’s widely regarded Death By Indifference report and the subsequent inquiries highlighted the tragic experiences faced by six people with profound and multiple learning disabilities and the reasonable adjustments that healthcare professionals must make in order to listen to a patient’s family and not make assumptions about a person’s quality of life and health just because they have a disability.

In conclusion, I hope that the new coalition Government are successful in delivering their stated aim of promoting freedom, fairness and responsibility. With those guiding principles at its core—most notably fairness—I very much hope that people with a learning disability can feel that they too have a stake in this Administration and that it will help them to live more independent, free and prosperous lives. Whether that be in the fields of welfare reform, education, health or even culture, I look forward to working with the new coalition Government to improve the lives of people with a learning disability and their families and carers. For the past 18 years, successive Governments have done their best in this regard. I cannot believe that a coalition Government cannot do even better.