Health and Social Care Bill

Baroness Wheeler Excerpts

Tuesday 13th March 2012 Lords Chamber

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

My Lords, I shall speak also to the other 41 amendments in this group, some of which, I stress, are minor, technical or consequential.

Part 9 establishes the information centre in primary legislation, setting out its powers in relation to the collection, analysis, publication or dissemination of information. Several noble Lords, as well as the British Medical Association and the NHS Future Forum, have expressed a keen interest in the need to ensure an appropriate balance between the protection of patient information and the use and sharing of information to improve patient care. For example, I recall that the noble Baroness, Lady Wheeler, stressed the need to provide,

“safeguards that are strong enough to protect patients”.—[Official Report, 21/12/11; col. 1802.]

She is, of course, absolutely right. We are sensitive to these concerns.

Your Lordships have already approved amendments that raise the threshold required for the board and CCGs to disclose personal information. Government Amendments 268, 280 to 282, 284, 285 and 287 to 289, which are supported by the BMA, further strengthen the protections in the Bill in relation to confidential personal information. Government Amendment 268 would in effect restrict the bodies that are able to request the centre to collect confidential personal information to the principal bodies—that is Monitor, NICE and the CQC—or any other body prescribed in regulations. It also restricts the making of such requests to a person to whom information may be lawfully disclosed—for example, because they have obtained consent or have a power in statute to require such disclosure—or where the information may be lawfully disclosed to the centre.

Government Amendment 272 limits the circumstances in which the information centre may require provision to it of confidential personal information. Government Amendments 280, 281, 282, 284, 285, 287 and 288 clarify when dissemination by the information centre of information which identifies or enables the identity of an individual to be ascertained would be permitted, and when the information centre may be directed to disseminate or not to disseminate information. Government Amendment 289 would require the information centre to publish a code of practice for health or social care bodies or anyone providing publicly funded health or social care on how to deal with person-identifiable or other confidential information.

We believe these amendments strike the right balance between appropriately protecting an individual’s confidential personal information and ensuring that the wider benefits of safely and securely sharing information, which include improvements in the quality of services and treatments, can be realised. There are also a number of minor and technical amendments to improve the drafting of the clauses and to ensure that they can be effectively exercised in practice.

Government Amendments 291A to 291D and 297A to 297D are intended to provide a further degree of future-proofing to ensure that the exact requirements for the future development and delivery of informatics systems to support the health and care sector can be met. Last week, my right honourable friend the Secretary of State for Health highlighted our approach for delivering informatics systems in the future. We intend that the board and the Secretary of State will be supported in the management of informatics systems and services by a lean delivery organisation that will take over from NHS Connecting for Health from April 2013. We are currently looking at where these delivery functions will sit, with the information centre as an option to house some or all of this work. These amendments would enable provision to be made so that the centre could exercise the functions of the Secretary of State or the board in relation to delivering these systems. The amendments will also help to future-proof the legislation so that the provisions can support a more flexible, agile approach to delivering informatics systems in the future. I beg to move.

[Baroness Wheeler]

My Lords, I welcome and support the government amendments in this group. In Committee, I stressed our strong support for placing the Health and Social Care Information Centre on a firmer statutory footing and replacing the current special health authority. The centre, male-midwived by my noble friend Lord Warner, as he put it, was set up by the Labour Government and has enjoyed a large measure of success, particularly in developing the bedrock quality improvement initiatives in the NHS. I stressed then that if we are able to get the patient confidentiality issues right, the UK has a huge opportunity to lead the world in health research.

The government amendments go a long way towards meeting the concerns expressed by me and other noble Lords on safeguarding patient confidentiality and the need to place a greater emphasis on obtaining consent from the patient when this information is collected or published. The information centre now has to obtain consent before it publishes information that could identify a person.

The new clause in Amendment 268, in particular, which establishes what type of information is confidential and how the information centre must deal with information, is a major step forward, as is the new clause outlined in Amendment 289 requiring the information centre to develop a code of conduct on confidential information.

The noble Earl quoted me from Committee stressing the need for safeguards that are strong enough to protect patients. As that is the first time that I have ever been quoted by the Government, I think I can legitimately claim credit for the subsequent amendments. The extra safeguards to protect patients—for example, detailing when the Secretary of State can request information and who can request the information centre to collect information, and ensuring that consent must be obtained where the information is deemed confidential—are all vital to ensure public and patient confidence that information will be properly acquired, stored, used and published.

We also strongly support Amendment 268, limiting the range of bodies that can request that the information centre collect personal or confidential information to principal bodies, such as Monitor, CQC or NICE, which are able to make a mandatory request because they have obtained consent and have the power under statute.

On the code of conduct, I hope that the noble Earl will assure us that there will be widespread consultation on the development of a code. I should also be grateful if he could reassure the House that the code will provide further detail about the proposed mechanisms that the centre will need to obtain the consent of patients. It is obviously important that we get this issue right. What will be the process for obtaining consent where people are unable to provide it—for example, patients who are unable to make decisions for themselves under the Mental Capacity Act 2006?

Finally, the Government’s Statement in the House on 6 December on UK life sciences announced their intention to share much more patient information with the private and independent sectors in an anonymised form to aid medical research and development. I believe that there are to be discussions with the BMA and other appropriate organisations on that matter to ensure strict safeguards that will instil public confidence. We particularly want to be clear how the Government will judge to which companies they will make that information available and what criteria they will use in those circumstances. I should be grateful if the Minister could update the House on progress on that issue.

[Earl Howe]

My Lords, I am very grateful to the noble Baroness for her broad welcome for this group of amendments. She is absolutely right: they improve the provisions for patient confidentiality and, at the same time, the sharing of information where that is appropriate. I also welcome her endorsement of our approach to the information centre, which, as she rightly said, was set up under the previous Government and, we believe, has proved its worth in the mean while.

She asked a number of questions. On the first one, relating to consultation, yes, we will work with a range of groups in developing the code and will publish proposals in due course. On her other questions about the mechanisms for consent and obtaining consent from patients who are unable to give it because of mental incapacity, I hope that she will allow me to write a letter to save the time of the House but also because I want to get my answers absolutely correct, and I fear that I would leave important things out if I tried to answer her now.

[Baroness Wheeler]

My Lords, before the noble Earl sits down, what about the point relating to UK life sciences and the information given to the private and independent sectors?

[Earl Howe]

I apologise; I did not mention that. I will cover that point in my letter as well.

--- Later in debate ---

[Lord Newton of Braintree]

Having listened to the debate, I differ a bit from the noble Lord, Lord Wills. I have heard enough from the two distinguished lawyers who spoke beforehand to come to the view that my noble friend would be very unwise to rush down this path without more time than whatever there is—less than a week—before the intended Third Reading of the Bill to sort out the issue.

As always, my head has been left spinning by the lawyerly contributions from my noble and learned friend here and my noble friend down there. I just want to raise a couple of innocent layman’s questions that may even be a bit naive but which relate to the point that the noble Lord, Lord Lester, raised: what is the definition of all this?

I observe that the heading of the new clause does not talk about provision at the request of a public body, just provision of certain services, implicitly by anybody, whether or not commissioned by a public body. The first sentence reads:

“A person who is commissioned to provide”,

these services, undefined. Private people commission private services from private bodies in many areas—private hospitals, private residential care homes, private chiropodists, private this, that and the other. As far as I can see, the amendment extends the definition of public body to bodies that are not public by any reasonable definition and are not commissioned by public bodies to provide a service. That seems to me to be the natural construction. This is at least as much a question for the noble Baroness, Lady Greengross, as for the Minister, but that is how I read it. If that is its purport, it is not sensible and we should not rush into it.

[Baroness Wheeler]

My Lords, these Benches strongly support the amendment tabled by the noble Baroness, Lady Greengross, and the noble Lords, Lord Low and Lord Rix, to which I have added my name. It is frustrating that we appear to have moved no further forward from Committee, when the noble Baroness, a plethora of respected organisations representing older people, mental health, disability and human rights organisations, as well as the Equality and Human Rights Commission, were saying that there was a real problem which needed to be addressed by primary legislation. There are powerful arguments for amending the Bill in line with the amendment. They have again been ably made by noble Lords and I do not need to go over them again.

I believe that my noble friend Lord Wills addressed key points raised by the noble and learned Lord, Lord Mackay, and other noble Lords—as far as I was able to follow as a non-lawyer—and indeed acknowledged that this was unfinished business on the part of the previous Government. We amended the Health and Social Care Act 2008 to address this issue in respect of residential care. What has changed dramatically since then is that well over two-thirds of home care services are now provided by the private and voluntary sectors and this Bill is likely to increase the proportion of contracted-out provision still further.

The Government’s view, expressed in Committee, that any further legislation would cause uncertainty in other areas outside health and social care is a strange one. In this light, the obvious counter-argument is that the 2008 Act has already opened the door and, in my view, that factor only strengthens the case for the loophole to be closed off. Analysis by key human rights lawyers, counsel for the Equality and Human Rights Commission, key charities and civil liberties organisations have all endorsed this approach and stressed that case law does not support the Government’s view. As we have heard only recently, the Joint Committee on Human Rights’ report on independent living again called for the current Bill to be amended to extend the public function definition to the provision of care at home. For me, that is the key point. All these organisations still argue strongly that there is a loophole that needs to be addressed.

Moreover, the Government’s argument, again in Committee, that the YL v Birmingham City Council judgment has not been challenged to demonstrate that home care services are not covered by the Act or existing legislation is also weak, in my view, and does not inspire confidence in what might happen in the future. My understanding is that the subject of the YL judgment was residential care and the scope of the 2008 Act is therefore limited to that.

I hope that the noble Earl will have good news for us that the Government have rethought this issue and recognise the very real problem and concern that exist for the future. I hope that he will accept this amendment. We all agree about the importance of taking a human rights approach to care provision, with dignity and respect for older people embedded. The current loophole in the provision of personal care in the home by third or voluntary sector providers is of deep concern to thousands of recipients of home care. We need to ensure that this key opportunity to achieve clarity in this matter in the current Bill is not missed.

[Earl Howe]

My Lords, we have heard many excellent speeches in this debate, not least from the noble Baroness, Lady Greengross. I know that the noble Baroness and all those supporting her are motivated by a determination to ensure that everyone who uses publicly funded health and social care services is protected from abuses of their human rights. I want to make it clear that I absolutely share that determination.

It is crucial that we ensure that vulnerable people are protected, no matter what age they are, no matter whether they have a disability, and no matter where they happen to live or where they happen to be at any given time. The requirement for people to have their human rights protected and respected is not negotiable. This is absolutely fundamental in a civilised and democratic society. The question we have before us today is how best to achieve that, and whether the proposed amendment would help or hinder us in doing so.

Amendment 292A is intended to provide certainty about the coverage of the Human Rights Act with respect to healthcare and home care providers. I understand the noble Baroness’s arguments for her amendment, and I completely agree about the importance of the Human Rights Act and the public sector equality duty. It may provide reassurance if I state clearly and unequivocally that the Government’s view is that all providers of publicly funded health and care services should indeed consider themselves bound by the Act and the duty. This is the position that we expect private and third sector providers to follow and the position that we would argue for if a case were to be brought; and we think there are good arguments with which a court would agree.

Of course, legislative provision is far from the only mechanism we have for ensuring protection for those using healthcare and domiciliary care services and for improving the quality of that care. In fact, we would argue that in order to ensure that users of those services are protected from the kinds of tragic abuses that the noble Baroness and others have spoken about so eloquently, we need to focus efforts on changing the culture and practice of services which provide poor care. We are working hard on several fronts to drive improvements in the way that people, including older people, experience health and social care services. We know that this is essential, and much of it predates the excellent EHRC report that resulted from the inquiry led by the noble Baroness, Lady Greengross.

To offer just a couple of examples of the work that we are doing to this end, we have made the Care Quality Commission responsible for assuring quality of care from April. The CQC will undertake a programme of inspections of 200 home care providers that will specifically look at supporting home care workers, the care and welfare of those receiving home care, and the involvement of people in planning and managing their own care. The new disclosure on barring service will replace the vetting and barring scheme in November this year and will make it easier for home care employers to check the suitability of their staff by providing a seamless service and introducing portable criminal record checks.

We know that legislation has a role, which is why we intend to put adult protection on a firm statutory basis for the first time ever by requiring local authorities to convene and manage local safeguarding adult boards, by legislating for their key roles and responsibilities, and by requiring them to be in touch with and accountable to local communities. We expect to see much better sharing of information and action that will help to drive up the safety and quality of services. The forthcoming White Paper on social care, which we intend to publish later this spring, will set out the broader strategic context not only on safeguarding adults but on improving quality in care services overall. The Government also intend to respond to the Law Commission report on adult social care law by creating a single statute for social care supported by statutory principles which place the well-being of individuals at the centre of the decisions made about people.

To return to the amendment itself, I am afraid that, despite the persuasive case put by the noble Baroness and others, I am not able to support it, and I hope that noble Lords will allow me to set out why. The problem is that while, on the face of it, this amendment simply provides helpful certainty about the coverage of the Human Rights Act with respect to health and homecare providers, in reality it has very serious and unhelpful implications for the wider interpretation of the Act. This may sound like a rather dry, legal argument, but it is an extremely important one with very practical consequences. By stating expressly that providers of healthcare and homecare services were covered by the Act, we would cast doubt on whether all the areas beyond health and social care were covered by it. However we framed it—whether we made it an avoidance of doubt provision or a deeming provision—we would weaken the applicability of the general test, suggesting that a narrow interpretation of the Act was appropriate and raising doubt about the Act’s applicability to all those bodies that had not been specified explicitly in the legislation.

We would also encounter the significant problem, referred to by my noble and learned friend Lord Mackay, of how to ensure that a specific provision of this type did not have the unintended consequence of making the situation less clear with respect to healthcare and homecare services. When noble Lords think of the wide range of services that fall under the banner of homecare services, I am sure they will appreciate the difficulty of drafting legislation that covers all relevant services and avoids any potential loopholes. My noble friend Lord Lester made a similar point. We can see how the proposed amendment, as drafted, makes the situation unclear. It is not clear how it applies to a person receiving care in the home of a family member—a point made by my noble and learned friend—or whether it applies to services provided under direct payment arrangements rather than being commissioned by a local authority or NHS body.

It is for those reasons that the Human Rights Act is quite deliberately designed to make broad provision that applies to all public bodies across the whole range of services. As my noble friend Lord Lester said, the Act is very carefully put together. Any amendment of the Act must be done by looking at it in the round, otherwise we risk destabilising its careful construction. That brings me to another point mentioned by my noble friend Lord Lester.