Care Bill [Lords]

Barbara Keeley Excerpts

Monday 10th March 2014 Commons Chamber

[Paul Burstow]

Organisations that have supported the new clause, which I have drafted, include people with a legal background, social workers, Age UK and Mencap—those who often provide a voice for the voiceless. One of my concerns is that the people whom the Bill seeks to benefit are very likely to be those who are under duress and therefore unlikely or unable to express an opinion. That is why the new clause has been crafted to try to ensure that the necessary safeguards are built in.

New clause 3 addresses the issue of carers, particularly the identification of carers. Carers are the backbone of our care and support systems. Without them, those systems could not function in delivering the quality of care that we would expect. Those carers make huge sacrifices to care for their loved ones. Their health, their wealth and their lives are often sacrificed as a result of what they do. We know from the census that a carer is twice as likely to be in bad health as a non-carer.

The Government should be applauded for the fact that in this Bill and in the Children and Families Bill they have taken great strides to improve the rights of adult carers, parent carers, and young carers. They have listened, engaged and responded to the concerns that Members in all parts of this House and in the other place, and many carers’ organisations, have raised with them. However, all this hinges on whether carers are aware of these new rights and whether their council is successful in its new duty of identifying them, as required under the Bill. The problem is that the NHS is still left untouched. Millions of people caring for someone with a health problem may never come into contact with their council or be aware that that would be the next step in coping with their situation.

[Barbara Keeley (Worsley and Eccles South) (Lab)]

I welcome the right hon. Gentleman’s conversion to the identification of carers by NHS bodies, because when he was in the role of Minister he did not support that. I hope that he can convert the current Minister. Is it not the case that, as Macmillan Cancer Support has said, 95% of carers for people with cancer, who may care for only a short time but for people with terminal illness, do not have any contact with local government and do not have a carers’ assessment, and is not that the key? Are we just going to let those people struggling in those difficult circumstances carry on doing so?

[Paul Burstow]

The hon. Lady is not a convert. She has been consistent and clear in her pursuit of this provision, both with her own Government and with this Government, and I hope that eventually her persistence will pay off. It has persuaded me, along with many carers’ organisations, of the need for such a change.

Institutionally, the NHS is not good at grasping the different responsibilities it has towards carers compared with those who are its immediate concern—the patients. As a result, it lets carers down institutionally, and that is what the new clause says we need to address. We need to change the NHS’s mindset institutionally to make sure that it recognises its responsibility for millions of people with caring responsibilities and asks the necessary questions. Macmillan Cancer Support has found that 78% of health care professionals have come across a cancer patient who has been admitted because their carer could not cope at home. Here is why the NHS must fully engage with carers: only one in three professionals who sees an accompanied patient always goes on to check whether the person with them is their carer.

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[Mr Ward]

I will try to hit my five-minute target by excluding a lot of other comments, including on the eligibility criteria, which I have spoken about at length on other occasions.

The shadow Minister, the hon. Member for Leicester West (Liz Kendall) effectively made the case about the false economy, whereby the criteria are at the wrong level and people’s conditions deteriorate, so they and the state face a greater cost. My right hon. Friend the Member for Sutton and Cheam (Paul Burstow) referred to the provision to identify patients who are or may become carers. I am concerned about carers who end up becoming patients or needing care because of a lack of support. We need to consider that, too.

I will confine my comments to new clauses 7 and 9. Without those, the rest is almost irrelevant. My right hon. Friend referred to the elephant in the room. An elephant in the room is something we are vaguely aware of; we know it is there but we are not prepared to talk about it. Out there, people are talking about the crucial issue of whether these services can be afforded. So much in the Bill is so good, but we are in danger of casting doubt on the deliverability of what we know is good and on whether it can be implemented.

As is often the case, it is no use relying on the good old principle of localism and local authorities making the decision to pick up these things. There is a difference between localism that is freedom and localism that is an abrogation of responsibility by Government to fund services during a national crisis. If we get that wrong, we will simply give local authorities the freedom to fail. We need to ensure that that does not happen.

The sad thing is that, although there is so much good will out there for the Bill— we are in grave danger of not responding to the comments of the voluntary and community sector and the public sector generally on the principles of the Bill and many of its provisions—there is a suspicion that, at the end of the day, we cannot deliver on it. The question is why would we not support new clauses 7 and 9. We are asking for assurances, not for additional money, because the truth is we do not really know. We are asking for assurances through a review. We are asking not for additional funding but for a commitment to a review.

I was going to give a grand finale about the voyage into the unknown, but it is not unknown, is it? We know that huge demands will be placed on the system and that that will have grave implications for many people who are receiving and providing care. We know that that is on the way. We think we have a system in place through the Bill that will enable us to deliver on that. The big question is not an elephant in the room. The groups that I am working with on the Bradford Cares projects, Age Concern, Mencap, Scope and the Bradford and District Disabled People’s Forum say that this is good and they like so much of the Bill, but they raise their eyebrows and say, “Will the funding be there?” That is the big question that is asked over and again. Through new clauses 7 and 9, we can at least give them some faith that we recognise that it is a big issue and that we are seeking to identify and meet our responsibilities to fund what we all want to do and see.

[Barbara Keeley]

In introducing new clause 3, the right hon. Member for Sutton and Cheam (Paul Burstow) said how he felt that the NHS institutionally must change to identify and support carers. Of course I agree with that. My hon. Friend the Member for Leicester West (Liz Kendall) introduced new clauses 19, 20 and 21. She mentioned my private Member’s Bill, which I feel is having its last outing today in these new clauses; it proposed measures on the identification of carers. I want to touch on how long these issues have been around.

Eleven years ago, I completed a project on identifying and providing support for carers and co-wrote a report on that. The report made recommendations to Government, NHS bodies, GPs and their teams on how important it was to identify and support carers. That project mapped 36 primary care support initiatives for carers run by the Princess Royal Trust for Carers. We are talking about a long time ago. We felt that the role of carers, including their contribution to the work of the NHS, had generally been under-recognised and under-valued.

Through the 1990s, to the point where I wrote that report, we had carers assessments following the excellent Carers (Recognition and Services) Act 1995, introduced by Malcolm Wicks. That was strengthened by the Carers and Disabled Children Act 2000, which enhanced the carer’s right to an assessment. We even had in 1999 standard 6 of the national service framework for mental health, which said:

“all individuals who provide regular and substantive care for a person on the Care Programme Approach should have an assessment of their caring, physical and mental health needs, repeated on at least an annual basis”.

Even at that point, the Department of Health said that the implementation of the carers’ right to an assessment four years in was

“patchy. Assessments are not always carried out. Some carers are offered very sensitive practical and emotional support. But others receive very little, or no help”.

Fast-forward 15 years to the Care Bill, and carers are still in a similar situation. The identification of carers and referring them to sources of advice and support is still not happening on an adequate scale, and we have had all that legislation and good practice. Carers UK has told us that two thirds of carers that it surveyed said that, although their GP knew they had caring responsibilities, their GP did not give them any extra help. We have heard examples of what that can mean.

Carers week is in June, and we look forward to that. We know that in that week we meet carers at events. There is a common theme: they tell us repeatedly they are not getting advice and information to help them care. They can be carers of people with cancer, carers for people with terminal illness, carers of people with Parkinson’s or of people with dementia. Does the Minister want to start changing that for carers week this year? Does he want to go along to carers week events and have carers start to say to him, “I have been identified by my GP and my GP does recognise my caring role”? I hope he does, because I have heard so many people say how much it would have meant to them and what a difference it would have made to their caring if their GP had recognised it.

Even for conditions such as Parkinson’s, only one in 10 carers has been offered an assessment. These are people who are caring very often more than 50 hours a week, and, as a disease such as Parkinson’s progresses, up to 24 hours a day. They and the people caring for somebody who has had a stroke or who has dementia are the people who really need advice, support and breaks. These are the reasons we must support new clauses 3, 19, 20 and 21.

The Care Bill puts great emphasis on carers assessments rather than on the identification of carers, and I introduced a private Member’s Bill on that in September 2012. The clauses in that Bill, which we see again today, would have ensured that NHS bodies had procedures in place to identify carers and to promote their health and well-being and ensure they receive information and advice. I believe the key reason in identifying carers should be because we have a concern for their health, particularly those with the heaviest caring commitments. That is one in five of all carers, and that is more than 1 million people, which is just too many.

Those caring for more than 50 hours a week are twice as likely to suffer ill health, particularly those caring for a person with dementia or stroke. My right hon. Friend the Member for Salford and Eccles (Hazel Blears) has just talked to us meaningfully and movingly about the impact of that caring role on her family. We want early identification and support for those carers so they can maintain their health and manage and sustain their caring role. I agree with my right hon. Friend that they should be fast-tracked for appointments. As hopefully we move towards integration and, beyond that, whole-person care, local authorities cannot be expected to act alone to identify and support carers.

As has been touched on in this debate, we also have to face the fact that the number of people receiving social care services is shrinking. In Salford this year, because of budget cuts, 1,000 people are going to lose their eligibility for social care services and 400 people who would have become eligible for care will not become eligible. The unpaid carers in those families will be taking on that substantial burden, yet, sadly, the GPs and doctors around them will not identify them, will not help them, will not make sure they get advice and support.

This Care Bill is the place to make the change, and I say to the Minister let us not wait another 15 years to make the change and place such a requirement on health bodies—and schools, universities, colleges and further education colleges in the case of young and student carers. Let them just have policies in place to identify carers and to provide support for them.

[Dr Sarah Wollaston (Totnes) (Con)]

I would like to speak briefly to new clauses 1, 26 and 9. I hope new clause 1 on the adult safeguarding access orders would rarely ever be necessary because, as the Minister knows, the vast majority of carers are out there day in, day out, night after night providing dedicated care, often at the expense of their own health. There is a tiny minority of people, however—and I am afraid I have met some of them—who are coercive, controlling and manipulative, particularly if there is money at stake. At the moment there is no right of entry even if other relatives or neighbours and friends have raised concerns, and even if clinicians have concerns. Of course in most cases a negotiation can take place and access can be gained, but very often that access is only with a rather controlling person in the room as well, and it can be very difficult to make a full assessment of capacity under those circumstances, as I am sure the Minister is aware. There are people who are at risk. We know that 29 local authorities have identified that there have been vulnerable adults for whom they have been unable to gain access.

New clause 1 is about stating that there needs to be a final backstop in circumstances where it is clear that the safeguarding of a vulnerable adult at risk is paramount. I know there are those who say we already have right of access under the Police and Criminal Evidence Act 1984, but unfortunately the bar is set too high and there is uncertainty about the ability to gain access. New clause 1 sets out very clearly the thresholds, and also the safeguards, because this is not about riding roughshod over individuals who do not wish to have a social worker entering their home. Instead it is about setting out the rights of an individual who may be under the control of a coercive third party. We need to have greater clarity and I hope the Minister will consider this new clause. Having a final backstop works well in Scotland; it is very rarely used but we need to have it in place as a final resort.

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[Norman Lamb]

I have already confirmed that we will return to the matter later in the process, and I hope that we will then end up in a satisfactory place.

Turning to new clauses 7 and 9 to which a number of hon. Members have spoken, the spending review considers spending pressures across adult care and support, the NHS and public health. In the current spending review period, we allocated significant additional funding to local authorities for adult care and support, including a transfer from the NHS of £1.l billion a year by 2014-15 to be spent on social care with a health benefit. That is not to say that I do not recognise how challenging the financial environment is for local authorities, but we know from figures provided by the local authorities themselves that the vast majority of cost savings have been achieved as a result of efficiencies and not of cutting services for people.

However, as the hon. Member for Leicester West (Liz Kendall) said in Committee, the answer is not just to throw more money at the system, but to look at how public funding is spent and to deliver a more radical reform of health and social care. That is why, in the spending review for 2015-16, we announced the better care fund, which is a £3.8 billion pooled budget for health and social care. That not only provides the resources needed to protect access to social care, but breaks absolutely new ground in establishing structures that will drive further and faster integration between health and social care.

As hon. Members have noted, the better care fund includes £135 million of additional funding for implementing the Bill in 2015-16. Some have argued that including that in the better care fund means that local authorities will face a choice between implementing the Bill and investing in integrated services. In my view, that is a false choice. On the contrary, our reforms are part of the same agenda, and we cannot afford to see those as separate issues. Both systems need to work more effectively together to help people live independently for longer.

[Barbara Keeley]

rose—

[Norman Lamb]

I am conscious that I owe it to hon. Members to respond to all the issues that have been raised.

The reforms in the Bill to extend assessments and support for carers can play a big part in keeping people out of hospital. The spending review provided £335 million in 2015-16 to help local authorities’ transition to the capped cost system and to offer universal deferred payments. Locally, health and wellbeing boards have a statutory responsibility to analyse current and future health and care needs and to develop a strategy to address them. Given such an approach, there is no need for the proposed amendments.

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[Dr Poulter]

I hope that I have already given the hon. Gentleman some reassurance that the data will have to be used for the benefit of the health and care service, or for the purposes of public health. They are not to be used for insurance purposes, for example. I will go on to outline some of the safeguards involved.

[Barbara Keeley]

Would the Minister like to comment on an announcement made at the launch of the MedRed BT health cloud—a cloud data system that is using our hospital episode statistics data—in the United States? At the launch, it was stated:

“People are using foreign data because it’s available. The UK made some gutsy decisions about data liberation. There’s political risk associated and they have a more tolerant climate over there.”

Will the Minister comment on the fact that we apparently have such a tolerant climate that MedRed and BT are now charging for access to our data on that cloud system in the United States?

[Dr Poulter]

I am not going to be drawn into commenting on an American system. The point is that there are strong safeguards under the 2012 Act to ensure that confidential data can be used only for the benefit of the health and care system. Of course, data that do not identify patients need to be used in a transparent way that can help to drive up care and services.

[Barbara Keeley]

rose—

[Dr Poulter]

I have been generous in giving way to the hon. Lady; I hope that she will let me address her point. It is important that we have data that are open and transparent and that are used to expose the quality of care that is available from different health care providers. We are one year on from the Francis inquiry, and we need open and transparent data in order to understand and compare the quality of care services in hospitals and in different NHS health and care providers. This is about helping us to recognise what good care looks like, so that we can extend it throughout the system. It is also about exposing the few examples of bad care in an open and transparent way. If we had—

[Barbara Keeley]

rose—

[Grahame M. Morris]

rose—

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[Dr Poulter]

It is clear that the information can be used only for the benefit of the health and care service or for the purposes of promoting health. It is about benefits to the NHS or to the health and care system. That is also what the 2012 Act identifies regarding provision of data. Let us not forget that we had to put safeguards in place because at no point did the previous Government place any restrictions on the use of data. Under the previous Government’s regulations, before this Government came to power, there was greater potential for abuse of the system. Although I am sure the previous Government would not have intended data to be used by private health care companies for insurance purposes or by others, less rigid safeguards were in place to prevent that from happening.

This Government, both with the amendments and the 2012 Act, have clearly stipulated that the information can be used only for the benefit of the health and care system or the health service. That is very clear and the previous Government never put such a provision in place. This Government have also given patients an opt-out in the use of data—something the previous Government never properly put in place. We have introduced good provisions about protecting confidentiality and using information in the NHS in a responsible manner. If the previous Government had been concerned about the use of data, they should have put in place more robust safeguards when they were in power, but they did not.

[Barbara Keeley]

Will the Minister give way?

[Dr Poulter]

No, the hon. Lady has had many interventions; I have been very generous—[Interruption.] I know she does not like hearing about Labour’s record in government on these issues, but I am afraid she needs to. This Government are putting in place safeguards to protect patient confidentiality. The previous Government failed on that agenda, and I am proud that we are able to table these amendments, which will lead to greater reassurance.

The amendments also help to clarify how data can be disseminated to support research for health and care commissioning, health and public health purposes, medical purposes, or other purposes relating to the provision of health care, adult social care or the promotion of health.

Government amendment 8 relates to the remit of the Health Research Authority. It has always been our intention that the HRA’s functions relate to health research and adult social care research, and the amendment clarifies that remit. It makes explicit that the HRA’s functions do not generally extend to research that relates to children’s social care, if that research is solely for the purposes of children’s social care. We must recognise that research may take place across the boundaries between health or adult social care and children’s social care, and the amendment will not inhibit such research. Although the HRA’s functions will not generally extend to children’s social care, the research ethics committees that the HRA establishes or recognises under clauses 113 and 114 will be able to consider children’s social care research in the round when considering a study that also involves health research or adult social care research.

A lot of research crosses health and social care, and some of it involves children. Where such research includes health elements, it already comes to the HRA special health authority for ethical consideration. Many university ethics committees accept HRA ethics committee approval and do not require separate approval by their own ethics committees. That will continue when the HRA becomes a non-departmental public body.

Paragraph 12(5) of schedule 7 gives the HRA a general power to do anything that appears to be necessary or desirable for the purposes of, or in connection with, the exercise of its functions. That power means that HRA can, if it feels it necessary or desirable, publish guidance that relates to children’s social care research where there is also an adult social care element or a health element that falls within the HRA’s remit.

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[Barbara Keeley]

On a point of order, Mr Speaker. I understood that this debate was scrutiny of the remaining stages of an important Bill. The Minister seems to be reading his speech into the record, which for me does not stack up as a debate on the remaining stages of a very important Bill, and an aspect of it—care data—that is crucial to every NHS patient in the country.

[Mr Speaker]

The Minister is certainly in order and there is a continuation of Report stage tomorrow. I am sure he will want to be sensitive to the fact that other Members wish to contribute.

[Grahame M. Morris]

In principle, I support the utilisation of truly anonymised patient data sharing for the purposes of improving public health, but I take issue with a number of the Minister’s points, not least in relation to new clause 25, tabled by my hon. Friend the Member for Copeland (Mr Reed). Accountability is important. If the Minister and the Government are serious about addressing the public’s concern, they would ensure that the Secretary of State and Ministers are responsible rather than an unelected quango. Frankly, the Minister’s assurances at the Dispatch Box this evening, and those given to the Health Committee just a week or two ago, need to be in the Bill, so that there is a level of accountability and some comeback.

When we debated patient data sharing in Committee and, more recently, in Westminster Hall, my impression was that Ministers have tended to conflate legitimate patient privacy concerns, which are shared by hon. Members and members of the public, with the general lack of support for the utilisation of patient data for further research. They are mistaken, because right hon. and hon. Members are more or less unanimous in supporting any move that can lead to better research, improved care and increased safety.

[Barbara Keeley]

I am grateful to my hon. Friend for giving way, because the Minister was clearly frightened of answering questions from me and from my right hon. Friend the shadow Health Secretary. The Minister refused even to listen to the question, so I shall ask my hon. Friend: does he think that there is scope for confusion because some companies are in the market of insurance products and health and social care? The Minister would not take the question, so we do not have any answers on how a firm such as BUPA, which is already involved in research and already using the data, could be dealt with.

[Grahame M. Morris]

That is a perfect example and an important question that the Minister and the Government should answer. If we are to ensure that we have public trust in the data and who will use them, such questions must be answered and people be given the opportunity to consider what the Government propose.

It has become clear in recent months that the public lack confidence that the implementation of the care.data scheme as currently proposed would protect the data from inappropriate use, not least because of the point that my hon. Friend has just made. I am sure she would recall that we recently had a Health Committee session on this issue—in fact, the Minister was present—and certain assurances were given, not by the Minister but by one of his officials, that companies outside the United Kingdom would not have access to such data. The thought ran through my mind that many private health companies are global in their operations.

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[Grahame M. Morris]

The hon. Gentleman makes an excellent point. It is not my intention to do that, but we have to recognise that the public awareness campaign—the Government’s early assurances about leaflets and letters—has been wholly inadequate. At a time when it is important for the Government to instil public confidence in the scheme, they keep doing things that undermine public confidence, for example by giving the hated company Atos—if you do not mind me using the term, Mr Speaker, because of the debacle in the Department for Work and Pensions—the contract to extract the data. There seems to have been a catalogue of errors.

I accept that this proposal has the potential to be a huge step forward. The Minister said it was not revolutionary, but I am quite often in favour of things that are revolutionary. It is revolutionary, because previous data collections from a hospital-based setting, from secondary care, have been largely episodic. This scheme will harvest data from GPs and primary care to follow the whole of the patient journey, and to identify trends and follow-ups. That is a revolutionary step forward, provided we have the necessary safeguards and assurances, and that we rebuild public trust. I am not suggesting that the scheme is unworkable and cannot be reformed, but there is a huge job to do to ensure that we restore public confidence.

[Barbara Keeley]

Will my hon. Friend give way?

[Grahame M. Morris]

I wanted to mention an example that has been presented to me in relation to rare illnesses. It is suggested that a patient could never be identified from the data, but identification might be possible in the case of very rare conditions, particularly if pharmaceutical companies had their own databases. We need some form of protection to cover those circumstances as well.

[Barbara Keeley]

I thank my hon. Friend: he is being very generous in giving way. Does he agree that scope is an issue? The Hospital Episode Statistics database was an administrative database, and that is what our data were being used for. My hon. Friend has made an important point about the loss of trust. When did any of us sign up to having our data used to recalculate the cost of insurance cover for long-term illness? When did we sign up to have it sold on a chargeable basis by BT and by MedRed, on its cloud system in the United States? Once control has gone, it is possible for the scope to vary all over the place.

[Grahame M. Morris]

That is a good point. It is very important for the Government to lay down parameters for the scope.

The sharing of medical data has a fantastic potential to do good, as long as the necessary safeguards are there, but if it is mishandled, it also has the potential to do great harm. Patient data consist of very confidential information, which could prove damaging to the public if it were to end up in the wrong hands. We have already seen examples of that. I share the public’s fear that the Government are not seeking appropriate safeguards in respect of highly personal and sensitive information. Despite the Minister’s assurances about new clause 34, I do not think that it goes far enough.

Let me return to the issue of accountability. The benefits for companies that seek to misuse or leak patient data, for example, are considerable. The Minister has ruled out insurance companies, but I am worried about private health care firms. The pharmaceutical industry could profit from the re-identification of patient records, and I believe that the absence of parliamentary accountability to which I referred earlier, and a lack of clear and harsh penalties for those who misuse data, are undermining trust in what could be a highly beneficial scheme. Subsection (2) of new clause 25 defines misuse, and subsection (3) gives an indication of the penalties that would be applied. I think that they might act as a deterrent.