Special Measures Regime

Baroness Keeley Excerpts

Wednesday 16th July 2014 Commons Chamber

[Mr Hunt]

I pay tribute to the staff in Stafford hospital. I also make the point that, even through the four years when those terrible examples of care happened in the hospital, much excellent care was happening, too, and the hospital had dedicated and hard-working staff. This has probably been tougher for them than for anyone else in the whole NHS. I thank my hon. Friend for the way in which he has campaigned for his local hospital. No one could have done more for their local services. I agree with him that we must implement the very detailed recommendations of the TSAs quickly and in full, and ensure that we give every bit of support necessary to both Stafford and UHNS to ensure that that merger works.

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

The Health Secretary talked about denial of the past, but that was a bit rich given that Conservative Ministers gave Jimmy Savile a managerial post at Broadmoor. He wants to think about that a bit more.

In view of the disgraceful care failures the Health Secretary detailed, I find it surprising that he relies on inspection to raise standards and ignores the obvious impact of cuts of £3.7 billion in social care budgets. Does he not see that inspection will not fix the parlous state of social care?

[Mr Hunt]

I am afraid that that is the difference between Government and Opposition Members. The hon. Lady says that there was denial over Jimmy Savile, but I stood at this Dispatch Box and apologised to relatives and members of the public for the mistakes relating to Jimmy Savile. I do not call that denial; I call it facing up to the past.

Of course, inspection is not the only answer, but the reason it was so wrong to abolish the expert-led inspections we used to have in social care is that the first step, if we are trying to improve standards, is at least to know where the problems are. Until we have those expert-led inspections, we will not know that. The next step is to work out how to solve the problems. We will be doing both.

Oral Answers to Questions

Baroness Keeley Excerpts

Tuesday 15th July 2014 Commons Chamber

[Norman Lamb]

My right hon. Friend is absolutely right to focus on the importance of better care fund plans, including the interests of carers. The planning guidance that was issued in December made it clear that the plans should include the well-being of carers. Updated guidance will be issued very soon, and will reinforce the central importance of carers’ being part of the plans. We do not yet have a final picture, but we are keen to ensure that all plans include the interests of carers.

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

Last week I raised with the Prime Minister the case of a 62-year-old man who is caring for his wife, who has Alzheimer’s. When he sought an urgent GP appointment for her, he was told that it would take five weeks for her to see her GP and two weeks to see any GP, or he could take her to Salford Royal hospital’s A and E department. Does the care Minister think that that is acceptable, and will he now back the creation of a duty for NHS bodies to identify carers, so that they and the people for whom they are caring are given the support and the priority that they deserve?

[Norman Lamb]

No. I do not think that that level of wait is acceptable, which is exactly why we are promoting the better care fund. We want to bring together disparate parts of the system so that care is shaped around the needs of patients, and that has been widely supported throughout the system. I should also mention that the hon. Lady’s party colleague Baroness Pitkeathley was incredibly positive about the Care Act, saying that it was the biggest advance in her 30 years of working in the interests of carers. I wish that at some point the hon. Lady would just acknowledge all the good things that the Government have done in carers’ interests.

--- Later in debate ---

[Jane Ellison]

I congratulate my hon. Friend on her great campaigning on this issue, and on the really good results that she has had. As she says, we have recently consulted on changing the regulations under the Medicines Act 1968 to allow schools to hold inhalers in the way that she has described. There was overwhelming support for such a change, and we will lay the necessary statutory instrument this week to enable the change to come into force on 1 October.

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

T6. On nurse-patient staffing ratios, it has been reported in the Health Service Journal that out of 139 trusts surveyed, 119 failed to fill their registered day nurse hours, 112 failed to fill their registered night nurse hours and 105 failed to fill their registered nurse hours across day and night. Is it not time for Ministers and NICE to state straightforwardly that a ratio of one nurse to eight patients or better is the only way for patient safety?

[Mr Jeremy Hunt]

NICE has taken the sensible decision to issue its guidance. It does so independently, but we are not making it mandatory on the advice of the chief nursing officer and many other chief nurses across the country for the simple reason that if we have a mandatory minimum, that can become the maximum that trusts invest in and many wards need more than 1:8. That is why NICE’s guidance was so important today.

NHS Investigations (Jimmy Savile)

Baroness Keeley Excerpts

Thursday 26th June 2014 Commons Chamber

[Mr Hunt]

My hon. Friend has made an important point. Of course we need to co-operate very closely with the police service, and the Home Secretary is doing a huge amount of work to establish what needs to be done to increase conviction rates for sexual offences. The point for the NHS to consider, however, is that the disclosure and barring scheme will only work properly if NHS organisers comply with it—as they are obliged to do—and report incidents, because that enables other NHS organisations to find out about them. I am not satisfied that the levels of compliance are as high as they should be.

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

I feel that our concern for victims must lead us to ask whether the actions of Ministers, or managers in the NHS, caused the pain that they suffered. That is one of the things that we can still do. Beyond compensation, there is accountability, and there must be accountability.

I must tell the Secretary of State that I do not think it was enough for him to say that behaviour was indefensible. Colleagues of his were Ministers at the time of that behaviour, and they must be brought to book for their actions. I agree with my right hon. Friend the Member for Leigh (Andy Burnham): we should focus on the fact that that appointment of a disc jockey to a hospital position was not appropriate. In some respects, that individual would have carried more credibility because of his appointment, and that is why I think that accountability is important.

I also think that, in future, children and vulnerable patients must be protected from certain people who have access to wards. It is not good enough to talk about bureaucracy. Volunteers, celebrity fundraisers and business backers must be subject to checks before being given access to hospitals and to wards, and they must expect to be subject to those checks. The present arrangements must change.

[Mr Hunt]

We do need more robust checks. However, I can tell the hon. Lady that I have apologised to all the victims and have said that if some of the reasons given in the reports for Jimmy Savile’s appointment to one position were as the reports claim, that was indefensible. Moreover, the Secretary of State who was in office at the time has said that it was indefensible. I think that that is accountability.

Patient Safety

Baroness Keeley Excerpts

Tuesday 24th June 2014 Commons Chamber

[Mr Hunt]

I welcome the increase in nursing across the country, and I am surprised that Labour Members do not welcome it. When I started in this job they spoke constantly about nursing numbers, but I notice they have now stopped doing that. Although those numbers are an important first step, it is not possible to compare trust with trust at this stage because they are all self-reported numbers. Over the next months—certainly by next spring—we will go through all the figures ensuring that NICE-approved tools are used to fulfil them. We will then see how trusts are doing compared with each other, which will be useful to them.

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

As a member of the Health Committee, I am disappointed that the Secretary of State does not understand that being dragged to the House to answer an urgent question is not the same as coming here to make a statement. I would prefer to hear first in this House what the Government are doing.

The Secretary of State mentions the leadership of David Dalton and Salford Royal NHS Foundation Trust, but that leadership led to safe staffing levels, which he has not supported. A recent Nursing Times survey found that the majority of nurses said that their wards were dangerously understaffed. I hear from nurses who are working with ratios of 2:22, 2:24 or 2:28—that is the reality. Does he think it is time he apologised for cutting the number of nurses?

Oral Answers to Questions

Baroness Keeley Excerpts

Tuesday 10th June 2014 Commons Chamber

[Mr Jeremy Hunt]

I can confirm that. What my hon. Friend said was profoundly important. There is not an automatic link between size and quality. We know that for certain types of treatment, there is huge benefit in centralising services, as has happened for stroke services in London, but other services can be delivered extremely well at smaller units, and we will continue to support those.

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

The Minister has just talked rather piously about spending NHS money on front-line services, but the NHS is spending £300,000 on a university secondment for a staff member who has left. How does he justify that sort of abuse?

[Mr Hunt]

I just point out to the hon. Lady that in the Queen’s Speech we made it clear that we are cracking down on inappropriate payments to people who leave the NHS, many of which are the result of contracts set up by her Government.

Health

Baroness Keeley Excerpts

Monday 9th June 2014 Commons Chamber

[Mike Gapes (Ilford South) (Lab/Co-op)]

rose—

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

rose—

[Mr Hunt]

I am going to make some progress, and then I will give way.

The NHS is about more than just getting through difficult winters. Looking to the future, this Government will continue to take the bold steps necessary to prepare our NHS for the long-term challenges it faces. There are two key areas for action if we are to rise to this enormous challenge. First, we must never turn the clock back on Francis. The NHS will never live up to its founding ideals if it tolerates poor or unsafe care. The last Government presided over an NHS in which doctors or nurses who spoke out were bullied, in which problems at failing hospitals were brushed under the carpet and in which vulnerable older people were ignored and, tragically, on occasions, treated with contempt and cruelty. This Government have stood up for the patient, championing high standards with a new culture of compassionate care which is now transforming our health and care system.

--- Later in debate ---

[Jackie Doyle-Price (Thurrock) (Con)]

rose—

[Barbara Keeley]

rose—

[Mr Hunt]

I will give way to my hon. Friend because she is affected by Basildon hospital.

--- Later in debate ---

[Mr Hunt]

Despite the amount of work that has been done in the past year, there is still much to do to improve safety and care. According to a study based on case note reviews, around 5% of hospital deaths are avoidable. That equates to 12,000 avoidable deaths in our NHS every year, or a jumbo jet crashing out of the sky every fortnight. On top of that, every two weeks, the wrong prosthesis is put on to a patient somewhere in the NHS. Every week, there is an operation on the wrong part of someone’s body. Twice a week, a foreign object is left in someone’s body. Last spring, at one hospital, a woman’s fallopian tube was removed instead of her appendix. Last summer, the wrong toes were amputated from a patient. This spring, a vasectomy was given to the wrong man. To tackle such issues, we need to make it much easier for NHS staff to speak out when they have concerns. We need to back staff who want to do the right thing, and we are currently looking at what further measures may be necessary to achieve that.

Today, this Government vow never to turn back the clock on the Francis reforms, and I urge the shadow Health Secretary to do likewise when he stands up. Another vital set of reforms that we need to make if we are to prepare the NHS for the future involves the total transformation of out-of-hospital care. We know that prevention is better than cure and that growing numbers of older people, especially those with challenging conditions such as dementia, could be better supported and looked after at home in a way that would reduce their need for much avoidable and expensive care. This year, three important steps have been taken towards that vital goal. First, the new GP contract brought back named GPs for the over-75s—something that was so shamefully abolished by Labour in 2004. Older people often have chronic conditions that make continuity of care particularly important. However, Labour scrapped named doctors, and we are bringing them back.

We are also acting to break down the silos between the health and social care systems with an ambitious £3.8 billion merger between the two systems. The better care programme is, for the first time, seeing joint commissioning of health and social care by the NHS and local authorities, seven-day working across both systems and electronic record sharing, so that patients do not have to repeat their story time after time and medication errors are avoided.

[Barbara Keeley]

The Secretary of State touches on a couple of issues, including safety, but ignores one of the most important ones, which is nurse-to-patient ratios. A safe patient-to-nurse ratio has been adopted at Salford Royal, and it could be adopted elsewhere. He is now talking about the better care fund. There is no new money in that fund, and if he is worried about pressure on the NHS, surely he should think about the £2.68 billion that is being taken out of adult social care. In my local authority of Salford this year, 1,000 people will lose their care packages. How is that good for alleviating pressures on the NHS?

[Mr Hunt]

Perhaps I can reassure the hon. Lady on those matters. First, the better care fund is the first serious attempt by any Government to integrate the health and social care systems and eliminate the waste caused by the duplication of people operating in different silos. The Government require all trusts to publish nurse-staffing ratios on a website that will go live this month. It is an important, radical change, and we are encouraging trusts to do exactly what she says is happening in Salford. It is important to say that, where other Governments have talked about integration, we are delivering it. We are doing one more important reform: we are taking the first steps to turn the 211 clinical commissioning groups into accountable care organisations with responsibility for building care around individual patients and not just buying care by volume.

From next year, CCGs will have the ability to co-commission primary care alongside the secondary and community care they already commission. When combined with the joint commissioning of social care through the better care fund, we will have, for the first time in this country, one local organisation responsible for commissioning nearly all care, following best practice seen in other parts of the world, whether Ribera Salud Grupo in Spain, or Kaiser Permanente and Group Health in the US—[Interruption.]

--- Later in debate ---

[Andy Burnham]

I just gave way to somebody from Wales. What is the hon. Gentleman on about?

That is not all. As I said before, the NHS is now missing its standard to ensure that cancer patients start their treatment within 62 days. That will cause huge distress to thousands of families up and down this country.

Another way in which the NHS has got worse, and every patient knows this to be true, is that it is becoming harder and harder to get a GP appointment. It is a common experience for people to ring their surgery early in the morning only to be told that there is nothing available for days. A survey has found that almost half of GPs predict that the average waiting time will exceed two weeks by next year.

The clearest measure of growing problems in the NHS is what has been happening in A and E, which is the barometer of the whole health and care system. Problems or blockages anywhere in the health and care system will manifest, in the end, as pressure in A and E. If A and E is the barometer, what is it telling us? It is warning of severe storms ahead. Hospital A and E units have now missed the Government’s target for 46 weeks running. For the last four weeks, the NHS overall has missed the Government’s target, suggesting that the winter crisis has now been followed by a summer crisis.

Why is that happening? The fact is that cuts have been made to general practice, social care and mental health, which are pushing more and more people towards the acute hospital and placing it under intolerable pressure. Today, many hospitals are operating way beyond safe bed occupancy levels, and not surprisingly this is taking a toll on A and E staff. Today, we reveal that three times as many A and E consultants left the NHS in 2013, raising the worrying prospect of A and E now being trapped in a downward spiral.

[Barbara Keeley]

I thank my right hon. Friend for giving way. May I just take him back to the point about GP access, because that is the start of the patient’s journey? In our survey in Salford, we did not find the situation that we had under the Labour Government, where 80% of patients could get an appointment within 48 hours. Now only half our patients can get an appointment within 48 hours, with one in seven having to wait more than a week, which is concerning, and one in five unable even to get through to speak to someone in their GP surgery. This is concerning us in Salford because these are people who may have worries—they may even have cancer and need tests—and they cannot get through to their GP.

[Andy Burnham]

My hon. Friend is absolutely right—the deterioration in general practice has been marked during the past few years. There have been changes that have disadvantaged patients. Within weeks of taking office, the Government removed the guarantee that patients could have an appointment within 48 hours. That explains the situation that my hon. Friend describes, alongside cuts to funding of general practice to the point that some practices now say they are on the brink of deciding whether or not they can remain open. The Government have responsibility for that situation, but there is not a word from the Secretary of State about it and there is not an acknowledgement that people have severe problems in accessing their GP.

--- Later in debate ---

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

As this is carers week, I want to talk first about the impact that legislation and financial policy have on the one in eight people who are unpaid carers. We know that being a carer can have a significant impact on a person’s finances, career, relationships and, of course, health. Full-time carers are more than twice as likely as non-carers to have poor health, but sadly the pressure on them is increasing. Surveys last year told us that six out of 10 carers reported suffering depression, and nine out of 10 felt more stressed due to their caring role.

Since 2010, local government budget cuts have led to funding on adult social care falling rapidly. By this March, local authority spending on adult social care had fallen by £2.68 billion in four years—a 20% fall. Those Government Members who have talked about funding today have nothing to be proud of when they reflect on that. Nine out of 10 local authorities now set their eligibility for social care at “substantial needs” or higher, compared with less than half of that in local authorities in 2005-6. Therefore, fewer people are receiving publicly funded care—300,000 fewer since 2008. Of course more of the care work load therefore falls on unpaid family carers, who in turn report suffering more stress and depression.

Carers UK reports that the ever-increasing need for care and support in our ageing population will outstrip the number of family members able and willing to provide it. A carers week survey found that fewer than three in 10 people believe that they will become carers, but about six in 10 of them will have caring responsibilities at some time in their lives. Between the last two censuses, the number of over-65s providing care grew by 35%. Among carers aged 60 to 64, 54% of men and 36% of women who were caring were also in paid work. Therefore, the pressures on men and women juggling work with caring have intensified.

Carers UK has found that one in five carers surveyed have had to give up work because either they were unable to secure flexible hours or their employer lacked understanding of their caring work load. Many carers then build up significant debts and have to cut down on basic expenditure, even on heating and food, to manage. This afternoon, I met a couple of carers at a speed networking event downstairs who told me exactly that. They had had to give up their jobs to care.

Dr Jamie Wilson, a dementia physician, has said that

“the financial welfare of carers should form part of a holistic assessment of needs. The combined effects of loss of income, additional costs of care and declining state benefits have led to an increasing impact on the resilience of carers and their ability to maintain the health of their loved ones.”

The Care Act 2014 represents a wasted opportunity, because it places on local authorities a duty to assess a carer’s support needs, but it places no similar duty on the NHS. The Act makes it clear that a local authority can charge for the support provided to carers. I feel that the Government are failing carers in two ways. Giving carers new rights to assessment is meaningless when the support available is dwindling as a result of higher eligibility criteria and increased charges. A right to a local authority assessment is of little help to carers who have no contact with their local authority.

At the meeting downstairs, I spoke with a carer called Caroline, who had come in with Macmillan Cancer Support. She has a multiple caring work load but has never been referred by her GP, or by any doctor she had ever met, to any sources of support. She only found Macmillan Cancer Support through a website. That is why identifying carers is so important. Macmillan’s survey of over 2,000 carers found that over 70% came into contact with health professionals during their caring journey, yet health professionals identify only one in 10 carers, with GPs identifying less than that. We cannot be smug or self-satisfied about that situation.

The need for NHS bodies to identify carers and ensure that they are referred to sources of advice and support was raised at all stages of debate on the Care Bill in the Commons, but the Government did not accept amendments on the issue, so now we will need further legislation. Another weakness of the Act is that it restated the option for local authorities to charge carers for services. Carers’ organisations have repeatedly asked the Government to make it clear once and for all that local authorities should not charge carers for the support they receive. However, Ministers did not consider it appropriate for the Act to remove that discretion, which I think is a shame. The Government are failing carers in a number of ways, as I have outlined. This carers week, it is time to show carers that we do value their caring.

Let me touch briefly on a further aspect of health policy that relates to the attitude of NHS staff towards patients, as highlighted in the Francis report. An important source of improvement in that area is the social media campaign #hellomynameis, run by Dr Kate Granger. The campaign started 10 months ago, after Dr Granger’s admission to hospital, when she noticed that many health professionals did not introduce themselves when treating her. She spoke movingly at the NHS Confederation conference last week on the importance for patients and their care of getting the small things right. She pointed out that, in patient relationships, health professionals have most of the power, but they can make things more equal if they introduce themselves and explain what they are doing. She also explained the impact on her when doctors and nurses described her only as “Bed 7” or “the girl with DSRCT”—a rare cancer. As she rightly says, health professionals should always try to find out the patient’s name and how they like to be addressed.

The #hellomynameis campaign has had great success on social media, but it deserves much wider backing. With 1.6 million people working for the NHS, we need to spread the message about the importance of treating patients as people. It should become routine for health professionals to think about a more courteous and human connection with their patients. I hope that shadow Health Ministers and Health Ministers will do all they can to support the campaign.

Finally, in the short time remaining, I want to refer to my concern about issues caused for my constituents by measures in the Infrastructure Bill to allow fracking or shale gas exploration under properties without permission or appropriate compensation. The measure will have negative consequences for people with homes, farms or businesses adjacent to shale gas wells. We have had an exploratory shale gas well at Barton Moss in my constituency since November 2013. I have heard from businesses adjacent to the site that are losing money as a result and from constituents who have been trying to move but are finding it impossible to sell their homes. I have to tell the Minister that the offer of a £20,000 community payment seems paltry by comparison with the losses that my constituents have already suffered, even during the six-month exploration. The Government seem more concerned about a rush for shale gas than about the communities affected by the industrialisation of land caused by this process. We must have more caution and more consideration for our communities.

I will end with a story that explains the difference between the NHS in 1997 and 2010. In the run-up to the 1997 general election, I met someone in Wythenshawe and Sale East who had been waiting two years for cardiac surgery and was worried that he would die while waiting. In 2010, in my constituency, I met someone who within one week went to his GP, was diagnosed and had specialist cancer surgery that saved his life. That is the difference a Labour Government did make and could make again.

--- Later in debate ---

[Norman Lamb]

Let me complete this point.

This is a complex area and we should not rush to legislate. We will keep making progress to respond to the scandal of Mid Staffordshire for the remainder of this Parliament. We are working closely with the regulators to ensure that key provisions, such as a faster fitness to practise test for nurses and midwives and English-language checks for all health care professionals, are in place during this Parliament.

The shadow Secretary of State quoted selected statistics on access to a GP, yet 86% of patients are satisfied with their GP practice. The Government have introduced a £50 million challenge fund, which will support more than 1,000 practices to develop innovative and flexible services. That will include Skype and e-mail consultations, as well as extended hours, and will benefit more than 7 million people.

The right hon. Member for Cynon Valley (Ann Clwyd) again spoke extraordinarily passionately, giving a voice to those who feel they have no voice in our system. We should all express our gratitude to her for her continued campaigning on this critical issue, which demonstrates that we still have a long way to go if we are to ensure that we have a system of which we can all be genuinely proud. Like the right hon. Lady, I hope that one day the flood of letters on poor care will stop. We are doing what we can through the actions we are taking and we are grateful to her for the enormously valuable work she did on the complaints system. I hope the Labour Administration in Wales will do the same, especially after she eloquently highlighted the problems there in a recent BBC documentary.

[Barbara Keeley]

Will the Minister give way?

[Norman Lamb]

I have given way quite a lot; I need to make some progress.

The right hon. Member for Newcastle upon Tyne East (Mr Brown) asked about allocations. It is right that the allocation of funding is no longer a political football but in the hands of experts. NHS England is seeking to make progress on reducing inequalities.

The hon. Member for Blyth Valley talked about charging in the NHS. Access to NHS services is based on clinical need, not on an individual’s ability to pay. That is fundamental to the NHS, and for as long as this coalition Government are in power the NHS will remain free.

We heard from Members on both sides of the House —my hon. Friend the Member for Bracknell (Dr Lee) and the hon. Member for Westminster North (Ms Buck)—that health care needs to change so that care is provided more locally. The better care fund establishes a £3.8 billion pooled fund, to help people to stay healthy and independent.

[Barbara Keeley]

It is not new money.

[Norman Lamb]

Of course it is not new money—this is a different way of working. We have never claimed that it is new money; this is to ensure that we use the money more effectively. Indeed, the hon. Lady’s Front-Bench colleagues have made the argument that by pooling the health and social care budgets, we can achieve more with the money available.

[Barbara Keeley]

Will the Minister give way?

[Norman Lamb]

No, I will not; I have given way many times. The fund is the largest financial incentive by any Government to promote integrated care, and it would be better if Opposition Members applauded the initiative rather than constantly criticising it.

At the start of this Parliament, this Government had five priorities for health and social care. We have delivered on all of them. Through the Care Act 2014, we have delivered the most profound change to the care and support system for a generation. After a decade of inaction under the previous Labour Government, we have introduced, for the first time, a cap on care costs and extended means-tested support. No one will have to sell their home during their lifetime to pay for care.

Under the leadership of Public Health England, we have created a new public health service, giving public health the priority it deserves in local government alongside other local services. As my hon. Friend the Member for Newbury (Richard Benyon) outlined, it is vital that we prevent ill health in the first place, as opposed to repairing the damage once it is done.

We are transforming health and care so that services are integrated around the needs of patients and users. We have revolutionised NHS accountability and seen a successful transition to a new health and care system. Finally, by focusing on outcomes rather than top-down diktat, we can identify what works and where we need to give additional support to help the system do more.

Oral Answers to Questions

Baroness Keeley Excerpts

Tuesday 1st April 2014 Commons Chamber

[Dr Poulter]

I think this is an own goal from the Opposition. They set the redundancy terms in 2006, when the shadow Secretary of State was a Minister in the Department, which have allowed extraordinary, eye-watering redundancy payments to be made, particularly to managers. That is to the disadvantage of front-line staff and patients. It is why we are currently in negotiations with the unions to ensure that we improve redundancy terms, stop those eye-watering payments and have more money to care for front-line patients.

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

21. Talking of eye-watering payments, may I refer to the six-figure pay-off of £300,000 reportedly paid to Jo-Anne Wass, one of the 10 highest earners in the NHS? Despite the fact that she is leaving this month, the NHS is said to be paying for a two-year secondment for her, even though she will not return. How many 1% pay rises for nurses could be found out of that £300,000?

[Dr Poulter]

These are questions that the Opposition should have thought about—the hon. Lady was a Minister in the previous Government—when they negotiated the redundancy terms. They are Labour’s redundancy terms, which we are changing. When we look at the figures, under the previous Government’s NHS reorganisation in 2006 to 2008, we see that the NHS spent more than £360 million on redundancy and early retirement alone, which compares with only half that—£178 million from 2011 to 2013—under the current Government. How much more money would have been available for staff pay had the previous Government got that right?

NHS Patient Data

Baroness Keeley Excerpts

Tuesday 25th March 2014 Westminster Hall

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

I am pleased to speak in this debate with you in the Chair, Ms Dorries. Other Members may not know that we made our maiden speeches together, so we have always been inextricably tied in that way.

I am raising issues today because I want the Minister, NHS England and the Health and Social Care Information Centre to appreciate some of the real concerns about past and current uses of NHS patient data. I will talk about concerns about a lack of transparency in decision making, the commercial use of patient data and the lack of consent for that use.

The chair of the HSCIC talked last week about the organisation’s having an “innocent lack of transparency”. That was an inappropriate description of an organisation that is causing serious concern about its handling of NHS patient data. A lack of transparency cannot be tolerated in the part of the NHS that is trusted with safeguarding patient data and I do not accept the description of “innocent” for that lack of transparency.

At a recent meeting of the Select Committee on Health, Members asked questions about decision making on data releases from the NHS Information Centre. The panel members, who included the Minister, were asked how many of the key decision makers from the NHS Information Centre, which released patient data to insurance actuaries, had later become decision makers in the HSCIC. Max Jones, director of information and data services, said:

“The executive directors of the HSCIC with responsibility for this area were not part of the old information centre.”

When asked again whether the individuals who made the decision on transferring data to insurance actuaries became decision makers in HSCIC, he replied that

“the very senior management in the HSCIC is not the same as very senior management that was in the”

information centre.

The Minister has recently given me an answer to a written question that directly contradicts that and I am concerned about that. I asked him about the numbers and levels of staff who had transferred to the HSCIC from the NHS Information Centre. His answer stated that, of the 11 members from the management board of the HSCIC:

“Three of the non-executive directors and two of the executive directors were previously members of the NHS Information Centre management board. One of the executive members is graded as a very senior manager post and the other transferred as a senior doctor.”—[Official Report, 17 March 2014; Vol. 577, c. 457W.]

Given that that directly contradicts Max Jones’s answers to the Select Committee, will the Minister ask Max Jones why he gave those incorrect answers?

Dr Mark Davies, one of the senior executive directors, joined the NHS Information Centre in 2008 and transferred to the HSCIC when that was established. Indeed, an article last August described how Dr Davies sits in the exact same office in Leeds that he occupied when the HSCIC was the NHS Information Centre. He is the director of clinical and public assurance—a post that, surprisingly, is being made redundant this month. Will the Minister tell us why a senior post on public assurance is judged to be redundant, given the lack of public confidence in the plan for care.data and the many questions being raised by me and others about commercial uses of patient data?

[Grahame M. Morris (Easington) (Lab)]

I congratulate my hon. Friend on securing this timely debate, which is raising some important issues that we need clarity on. We have just come from a seminar in which the Health Committee had some expert witnesses. Does she agree with the conclusions put forward there about the need for clarity before we go ahead with this data collection? I am thinking particularly about the cyber-security review, safeguards on anonymous or pseudo-anonymous data, separating out purposes for controls, a tighter definition of the care data—

[Grahame M. Morris]

I will. I just want to mention governance arrangements as well.

[Barbara Keeley]

Very much so. I must tell the Minister that we have not had time to absorb all of what has happened at the HSCIC, but we are disturbed by much of what we have learned. It seems as if there has been a proliferation of organisations and committees and that, as the use of that data and commercial data has burgeoned, the NHS has lost control of what is going on. That is of real concern.

[Jim Shannon (Strangford) (DUP)]

I congratulate the hon. Lady on bringing this matter to debate and on her perseverance at every stage. Does she agree that although the commitment given regarding a patient’s right to their data will be respected, perhaps patients in the NHS see this issue from their own points of view? They do not see the IT implications of what is taking place; because of that, there need to be more assurances for the patient on what happens.

[Barbara Keeley]

I very much agree. Last night I tweeted that I was to have this debate today and I was astonished with the response I got—an awful lot of people are very concerned about the issue. I will come on to opt-out in a moment, but let me conclude the point I was making about the director of public assurance’s post being made redundant. There will be considerable interest from Parliament on the basis for and the terms of that redundancy. I hope there will be no suggestion of a compromise agreement or gagging clauses. There are serious questions to ask about some of the activities.

While Dr Davies is still in post, there are a number of questions to ask about his role and those of his colleagues in the NHS Information Centre that later became the HSCIC. Dr Davies has been the chair of the four-person data access advisory group. Having two senior HSCIC employees on the advisory group on sensitive data releases, including its chair, brought criticism about a lack of independence. As chair of the group, Dr Davies also had the right to approve data releases unilaterally from the HSCIC, outside the committee. He was therefore in a powerful position. Indeed, it was reported in The Guardian last year that Dr Davies used that power to release to the Cabinet Office the confidential medical records of teenagers taking part in the national citizens service.

Perhaps more recently, Dr Davies’s views were becoming out of line on some aspects of the Government’s stance on care data. The Guardian reported in January that Dr Davies said that there was a “small risk” that certain patients could be “re-identified”, because insurers, pharmaceutical companies and other companies had their own medical data that could be matched against the pseudonymised records. He said:

“You may be able to identify people if you had a lot of data. It depends on how people will use the data once they have it. But I think it is a small, theoretical risk”.

The risks in this area have been rightly getting much attention and the Health Committee heard more about them this afternoon. Examples can be taken from the websites of both Harvey Walsh, a company that boasted of having more than a billion linked patient-level records and an ability to track patients over time, and OmegaSolver, the company with the patient analyser tool that it claimed can track patients throughout their hospital care.

In the case of OmegaSolver, its website held example screens showing use of its Patient Analyser tool, which it said could track actual patients within every hospital in England, providing up-to-date information for every disease area.

[Grahame M. Morris]

My hon. Friend is making an essential point. Whole data sets from the hospital episode statistics have been handed over to third parties, and that is absolutely reckless. We need those data to be deleted to restore public confidence in who has got the data and for what purpose.

[Barbara Keeley]

Indeed, and I say that they “held” that information because websites such as those that I mentioned were suddenly altered when attention was drawn to the capabilities that those organisations claimed to have when it came to tracking patients. The Minister and hon. Members may have seen reports about how the medical histories of people in public life could be tracked using online tools of that type. Widely reported accidents or medical procedures undergone in NHS hospitals clearly provide enough information to spot one patient event in the records and then read across to every hospital visit for that individual.

I ask the Minister not to echo the mantra he has used before or the one the HSCIC used when asked about OmegaSolver—that only aggregated patient data are used and that that does not represent the experience of an individual. It is clear that commercial companies granted commercial reuse licences have claimed that they can track

“actual patients within every hospital within England”.

As I said in the recent debate on the Care Bill, the hospital episode statistics database was originally an administrative database. When did any of us sign up to having our data used to recalculate the cost of insurance cover or by pharmaceutical companies as customers of OmegaSolver? I do not recall signing up to that and I am sure that other hon. Members did not, either.

Does the Minister agree that perhaps we should go back to thinking that patients should have the option of having their data used only for clinical care and for commissioning that care? In his response in the Care Bill debate on these issues, the Minister said that

“people can, at any time, object or change their mind, and the Health and Social Care Information Centre must respect their wishes and remove their data from records.”—[Official Report, 11 March 2014; Vol. 577, c. 206.]

At the time he said those words, I thought, “That is not currently the case.” I understand that deletions are not permitted and, once a patient’s record has been extracted, they cannot get it removed from the database. If it is in fact a new development that patients can change their minds and request that their data be removed from the records held by the HSCIC and by commercial companies, that will be welcomed, but I really look forward to the Minister telling us how that happens.

I gave the example of Harvey Walsh. They have described themselves as main suppliers of hospital episode statistics and NHS data to the pharmaceutical industry. Can the Minister tell me how an NHS patient can have their records removed from Harvey Walsh’s AXON database or any of the other databases that are outwith the HSCIC?

In the Care Bill debate, the Minister was also asked a question about whether free text would be uploaded from patient records either now or in the future, and he answered:

“As things stand at the moment, free text is not going to be used. That is the reassurance given by the HSCIC”.—[Official Report, 11 March 2014; Vol. 577, c. 206.]

However, Professor Julia Hippisley-Cox and Professor Ross Anderson have pointed out to Health Committee members that researchers already make use of free text from GP patient records. Indeed, medical students and computer science postgraduates at the university of Sussex and at Brighton and Sussex medical school have begun work on analysing doctors’ notes for data from free text.

The data being used come from the Clinical Practice Research Datalink, and Select Committee members were told that those patient data are being used without specific patient consent or section 251 support—it is section 251 of the National Health Service Act 2006. If the HSCIC has given the Minister an assurance that free text from GP records will not be used, can he tell us whether and when the use of free text from GP patient records in the CPRD will be stopped, particularly given that that appears to be happening without patient consent? Patient consent is important, and I still get the feeling from the HSCIC that individuals are somehow being labelled as selfish if they have concerns about sharing their data.

I want to come back to concerns about the existence of the commercial reuse licences granted by the HSCIC. I have tabled a written parliamentary question on this, but I also put the question to the Minister now. He has confirmed that the HSCIC has granted commercial reuse licences. Will he now provide me with a list of each past and present holder of a commercial reuse licence granted and, for each licence holder past and present, will he list the purpose or purposes for which they applied and were approved to use NHS patient data from the HSCIC and its predecessor, the NHS Information Centre? As patients of the NHS, we deserve to know in which places and with which organisations our data are sitting and what they are being used for.

--- Later in debate ---

[Nadine Dorries (in the Chair)]

Order. Barbara Keeley.

[Barbara Keeley]

I, too, hope that the Minister will address that.

I want to give an example of data use approved by the Data Access Advisory Group of the Health and Social Care Information Centre, because I think that it is instructive. Minutes from the group’s July meeting show that the advisory group approved the use of hospital episode statistics data for HSpot Ltd and its FindMeHealth application. HSpot Ltd had requested HES data, including consultant codes, with the intention of publishing those data online to enable patients to compare procedures by hospital and clinician. Online information about FindMeHealth says that it is

“a new independent UK comparison site offering choice…to the growing number of people who are choosing to self-pay for private healthcare.

FindMeHealth compares prices across the top self-pay procedures and gives users access to the very latest data from NHS and private sources”.

What we have here is a kind of “Go Compare” website for private health care.

Much was said about uses of patient data in the debate on the Care Bill. The Minister said that information from the HSCIC

“may be disseminated for the purposes of ‘the provision of health care or adult social care’ or ‘the promotion of health’.”—[Official Report, 10 March 2014; Vol. 577, c. 136.]

Does the Minister think that the definition that he gave us extends to the HSCIC granting the release of patient data so that commercial companies can run comparison websites on the top self-pay procedures?

We need much greater transparency, and I thank hon. Members present for the questions that they have put on this matter. We need greater transparency from the Health and Social Care Information Centre, but we also need it about the other data sources and the other places where data are held. The chair of the information centre, Kingsley Manning, said in his speech last week that one of its key measures of success might have been that it was

“safely below the radar of public attention”,

but that organisation is no longer below the radar of public attention. Indeed, the organisation has become the story because of the errors that it has made, which mean that hon. Members and the public have discovered just how their confidential medical data are being used by insurers, by commercial companies and even on systems in the United States.

If people look at social media, as I did last night, they will see that there are many comments about just how much distrust people now feel towards the HSCIC. The organisation, as I said at the start, has claimed an “innocent lack of transparency”, but others accuse it of evasiveness and half-truths. As I have detailed, giving misleading answers to the Health Committee on established facts about who works for the organisation does not help.

All that has to change. Hon. Members, including me in this speech, have talked about ways in which the situation should and must change, and I hope that the Minister understands the vital need for that.

[The Parliamentary Under-Secretary of State for Health (Dr Daniel Poulter)]

It is a pleasure to serve with you chairing the debate, Ms Dorries. In some ways, I wish that we had new issues to discuss; many of the issues that we are discussing today we have thrashed out on a number of occasions in the Care Bill Committee and the Report debate earlier this month, so I am not convinced that there is a lot of new information that I can bring, other than giving further reassurances along the lines of those that have been given. However, it is important to make two points at the outset.

I congratulate the hon. Member for Worsley and Eccles South (Barbara Keeley) on initiating the debate and on her ongoing interest in this topic, but if she has concerns about a witness not giving correct information to the Select Committee, it is of course at her disposal to speak to its Chair, my right hon. Friend the Member for Charnwood (Mr Dorrell), and ask him to take that up with the witness. If she has those concerns, I suggest she does that. Of course, it is very easy to take comments—a few sentences—out of context. It may be that that is the case here; it may be that there are genuine concerns, but if the hon. Lady has those, it is for her to take them up with the Chair of the Committee and ask him to take the matter further.

[Barbara Keeley]

Will the Minister let me clarify the point?

[Dr Poulter]

I will give way in one moment. It is also the case, in relation to a number of the other issues and concerns that have been raised during this discussion, that some of the events and some of the evidence given to the Select Committee have of course been superseded by the amendments made to the Care Bill that we debated a couple of weeks ago, so it is difficult to see those points—

[Dr Poulter]

I am giving way to the hon. Gentleman’s hon. Friend in one moment. Let me complete the explanation and then I will be very happy to give way. Events have moved on since some of those evidence sessions, because of course amendments were made to the Care Bill that gave greater clarity and greater reassurance about the protection of patients’ data.

[Barbara Keeley]

Before the Minister moves off the point about the misleading evidence given to the Health Committee, may I put this to him? The Minister was there with Max Jones and Tim Kelsey—they were there supporting him at the Committee—and I think that this really is down to the Minister. I have, of course, raised the matter with the Chair of the Select Committee, but if a Minister brings civil servants and NHS employees with him to a Committee and those civil servants mislead the Committee—giving incorrect answers not once but twice—I think that it is really down to the Minister to raise the issue as well.

--- Later in debate ---

[Dr Poulter]

It is difficult to reply fully to such debates when we have very lengthy interventions, of which the hon. Gentleman is very fond. I would like to spell out to him what the quantum difference is. The Government have, through the 2012 Act, put in place safeguards for data protection that the previous Government never had. In particular, under the 2012 Act, data can be used only for the benefit of the health and social care system. We have put in place the safeguard that people can opt out from having their data collected and used. Those safeguards were not in place when the previous Government—

[Barbara Keeley]

Will the Minister give way?

[Dr Poulter]

No, it is important to make these points. The hon. Lady is very party political on the matter, and it is important that she recognises failings that existed in the past. I have mentioned the collection of in-patient data from 1989, out-patient data from 2003 and A and E data from 2007-08. I am not aware of any safeguards put in place by the previous Government to allow patients actively to opt out of the collection of those data. If she is aware of any, I would like her to clarify the record.

[Barbara Keeley]

The Minister is talking about opt-out, but I asked him a specific question about commercial reuse licences. I understand that there are at least six of those—six massive copies of all hospital episode statistics data—out there. How does an NHS patient get their data deleted from those copies, which sit with companies such as Harvey Walsh and OmegaSolver? How does that happen?

Care Bill [Lords]

Baroness Keeley Excerpts

Tuesday 11th March 2014 Commons Chamber

[Dr Sarah Wollaston (Totnes) (Con)]

I love medical data. They have undoubtedly saved my life and the lives of almost everybody in the House. Medical data, particularly big data, allow us to identify which drugs and procedures work and which do not work. They enable us to pick up the rare side effects of medications that have recently been released on to the market before they can wreak the kind of havoc that we have seen in the past. They enable us to identify which are the good hospitals and which are the failing hospitals. They allow us to identify which clinicians need serious retraining and from which clinicians the public need protection.

I would argue that evidence-based medicine is one of the greatest advances of our age. Evidence-based medicine works a lot better if we have access to big data. I state for the record that I do not intend to opt out. I hope that the Government will use the six months that we have to mount a clear campaign to the public that sets out just what the possibilities are.

I also feel that some of the concerns about releasing big data to pharmaceutical companies are misplaced. We need our pharmaceutical companies to be able to access those data, and there is a virtuous circle. We know that if we attract more research to the UK, not only will that benefit our universities, it will create more employment.

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

My honourable colleague from the Health Committee mentions pharmaceutical companies. Does she feel it is appropriate—we touched on this in the first part of the debate—that insurance companies have access to hospital data? As I said yesterday, BT now has access to our hospital patient data on the cloud systems in the United States. Does she think that those uses are concerning, and what should we do about them?

[Dr Wollaston]

That is absolutely correct and I will come to those points later in my remarks. The public did not expect to see their records uploaded to insurance companies, specifically where that resulted in higher premiums for many people.

We have a virtuous circle of improving access to data for our universities and creating high-quality jobs within the industry. If we can attract research to this country, and it is carried out among the UK population, the results from that research will be more relevant to the British population. Also, less research will be carried out in circumstances that are ethically questionable or with oversight that may not be up to the standards we expect in this country, or that sometimes exploits people in developing countries and where we cannot be sure of the accuracy and reporting of that research.

This is a virtuous circle, but I am afraid it has unfortunately been broken by the oversight and some of the arrangements that have taken place in NHS England and the Health and Social Care Information Centre. It is frankly beyond me that nobody has assumed responsibility for destroying the trust in what should have been the most exciting advance that would have benefited countless hundreds of thousands of people, not only now but in the future.

On the six-month delay, I call on the Minister to set out clearly how we will campaign to inform the public of the benefits of the proposal, but also of the risks. We have seen a rather patronising approach that has assumed the public will not notice or care about those small risks, but they are there and we must set out clearly what they are and how they will be addressed and minimised. There is much more we can do to minimise those small risks.

Of course we need transparency about past errors; the performance of NHS England and the Health and Social Care Information Centre in the Health Committee was disappointing. I am glad that on its website, NHS England has now clarified that Sir Nick Partridge, former chief executive of the Terrence Higgins Trust, will conduct an audit of all previous data releases by the NHS information centre—the predecessor body. We are also expecting the release on 2 April of all the data released by the current body. I understand that that will set out the legal basis for those releases, but also their purpose, and that goes to the heart of my amendment.

We must have clear penalties for breach, not only in the provisions in the Bill, but across the whole NHS and social care sector. The Minister will know that in practice, if somebody wants to snoop on someone’s personal medical data, there are far easier ways to do it. He will also know that the penalties are derisory. In a well-publicised case in December 2013, a finance manager at a general practice had been deliberately snooping on the records of thousands of patients within the practice, and focusing—rather disturbingly—on one young woman he had gone to school with and her family. Those were repeated breaches of her and her family’s privacy in a really toxic way. That individual was fined only £996. The public need to be clear that there will be severe penalties not only for individuals who deliberately breach privacy, but for companies. A fine of £996 for an insurance company or a large body is laughable.

--- Later in debate ---

[Dr Wollaston]

I agree with my right hon. Friend. Free text takes us into a different territory. People say things in free text to their doctor knowing that it will not appear in a coded form.

There are other ways in which we can improve reassurance for the public. Perhaps we could pseudonymise data before they leave the practice, which would introduce another important layer of protection. That suggestion has been made to the Minister on a number of occasions.

[Barbara Keeley]

The hon. Lady was in the Chamber yesterday when I talked about the cloud systems using NHS patient data launched in the States. What disturbed me about that was that the commercial companies involved said that the data—our patient data that they were using—included clinical data, demographics, education and income. That provided a context, and the companies could link episodes throughout a patient’s life. People would be disturbed if they understood that companies charging for usage in another country had linked their data in that way and had almost a lifetime’s coverage of people’s medical records.

[Dr Wollaston]

Linking primary and secondary care data is so important, but the purpose to which it is put is at the heart of the matter. To whom are the data released? If data are uploaded to Google—27 CDs of our database—and leave the premises, we have no control over them. We could not apply in the States the controls and sanctions I have described. It is simply not good enough to be reassured that the data will not be handled by Google staff. What is to stop them accessing the data when they have gone offshore? The hon. Lady is right to make that important point.

My amendments are about improving the situation in two ways, the first of which is on the purpose of the information. Will the Minister consider adding the word “improving”? He might be concerned that, if the wording is “improving health and adult social care”, the Bill could restrict open research. I do not agree. He will know that improving the care of patients is fundamentally the purpose of research. The amendment would therefore not restrict open research. The amendment would put beyond doubt the fact that the fundamental purpose of releasing data to, for example, insurance companies or Genomics UK, is improving care. People would see that the data release is not for a fundamentally commercial purpose to benefit a commercial organisation without a necessary link to improving care for people in the UK. Those questions should be asked at every stage of the process.

It was reassuring yesterday to hear the Minister clarify that insurance companies will be specifically excluded. However, there is no reassurance in the existing wording in respect of other organisations, including, for example, the Department for Work and Pensions. We can see how the case could be made that disseminating information to the Department for Work and Pensions is for the purposes of

“the provision of health care or adult social care”

or “the promotion of health”, which is the existing wording of new clause 34. As he knows, the longer somebody is off work with, say, lower back pain, the less likely it is that they will ever return to work. The Department for Work and Pensions could argue that disseminating information is all about improving care, but in fact, the fundamental purpose might be altogether different. If the principle in the Bill is that information dissemination is clearly about “improving” care, it would focus people’s minds on the underlying purposes when they make appraisals about whether their information should be given out. That could happen without disadvantaging primary medical research access to the information—the principle of improving care would clearly be at stake. I hope the Minister considers adding the word “improving” to the Bill.

My amendment (b) would mean that there is a reassurance in the Bill on how the data are handled by the person receiving them. We have the reassurance of the confidentiality advisory group, but including a responsibility and a duty in the Bill not just for those giving out the information but for those receiving it would be helpful. I ask anyone following this debate to hold their fire and not to be distracted by those who are rather jumping on the bandwagon on this issue and seeking to undermine the fundamental principles behind care.data. Those principles are important and we could save countless hundreds of thousands of lives in the future by having good access to medical data. But it simply will not do to gloss over the very real concerns that have been expressed. We will see the same problems arising six months down the line unless those very real concerns are addressed. To those who are following the debate, I say, “Do not opt out.” Let us give the Government, NHS England and the Health and Social Care Information Centre the opportunity to address those real concerns and to put them beyond doubt. I will not opt out and I hope that others will join me.

[Barbara Keeley]

In my early career, I worked as a systems programmer and engineer for IBM. I do not usually have much opportunity to mention that, but it is probably appropriate in this debate. I have been struck in recent weeks by how many people with an IT background—as well as those with medical backgrounds—have serious concerns about care.data and the plans of the Health and Social Care Information Centre.

The Minister was not keen to take interventions last night, so I will ask my questions now. I want to touch on the important issue of consent for the uses of patient data. As I said earlier in the debate, the hospital episodes statistics database was originally an administrative database. When did any of us sign up to having our data used to recalculate the cost of insurance cover for long-term illness? Given the points I made about the use of our confidential hospital patient data in commercially chargeable systems in the US, when did we sign up to have our data used on a chargeable basis by companies such as BT and MedRed on their cloud systems in the US? I do not recall doing that, and I suspect no one else does either. Does the Minister agree that patients should have the option of having their data used only for clinical care and for commissioning that care? If the genie is not completely out of the bottle yet, that is a question worth asking.

[Paul Burstow]

The hon. Lady is making important points about the need to be clear about what these data are used for. There is an argument that anonymised and properly controlled data have a part to play in the area of medical research. Does she think that should be out of scope, or can we have safeguards that enable it to be in scope? Understanding whether a medicine works in a particular way with a population is a very powerful use of such data. In her view, is that appropriate or not?

[Barbara Keeley]

In the concerns I am listing, I am not touching on the use of data in medical research. My concern is about the revelations we have had in recent weeks. I am citing commercial uses. Those data are being used on a chargeable basis and the companies involved seem to be crowing about it.

Can a project such as care.data guarantee that what patients sign up to now—or at any point in time—will not mean something different in future months when new datasets are gathered? The hon. Member for Totnes (Dr Wollaston) touched on some of the exciting possibilities for data, but new uses are being planned all the time. I mentioned systems in the US, but the Health Secretary recently signed a memorandum of understanding with the US Health Secretary for secondary uses sharing. The Minister last night said that he would not comment on a US system, but our hospital patient data is on those systems being used on a chargeable basis. Should patients have the right to withdraw their consent if new uses are developed that they do not approve of? The data have gone, and people are developing new uses for them, way beyond what any patient may have felt they consented to.

My right hon. Friend the shadow Health Secretary raised the issue of lack of transparency over the patient’s right to opt out. He asked about the junk mail leaflets— as they have been called—that were not even delivered to every household. What do Ministers propose to do to explain to all patients about the extraction of their identifiable personal data, and what precisely the dissent codes mean? We touched on this in our Health Committee inquiry sessions, and it was not clear, although some people thought they knew. It is a pity that Ministers have not taken the opportunity to answer the questions that were put to them in Health questions—the information changed on the HSCIC database on the very day we had Health questions in the morning.

We know that NHS England and the HSCIC can require GPs to upload patient data in an identifiable form from every GP practice in England, to be linked with the hospital episode statistics and other datasets. That is concerning enough, because it is a powerful new use of a lot of data, but the hon. Lady suggested that the HSCIC is talking about free text. That is a concern, because that is the place where people open up to their doctor and might give information that they do not want to be shared.

It is important that we know exactly how the HSCIC is funded. In the spirit of transparency, will Ministers request full disclosure of all funding sources of the HSCIC, including outside earnings from third parties for the use of data? I have talked about seeing our hospital data now being used on a chargeable basis by companies such as BT in the US. Who pays for the HSCIC’s staff? Are staff seconded to the HSCIC? Who pays the transaction costs? We have seen examples recently of networks of private organisations coming into NHS England to write and fund reports and lead consultations. Who pays for staffing and transaction costs, if it is third parties, is a key aspect of transparency.

The Health Committee has held an initial inquiry into care.data, and I and other Committee members expressed real concerns about the scheme and the impact it could have on the trust between patient and doctor. Our concerns have been compounded by news that commercial companies have been allowed to pay for NHS patient data, and use them for purposes unknown to the public. The use of our data has gone beyond our control, the data are in other countries and uploaded to cloud servers, and we do not know where they are.

[Grahame M. Morris (Easington) (Lab)]

My hon. Friend is making pertinent and relevant points. Does she share my concern about the need to tighten up on section 251 exemptions? They allow the use of identifiable data for commissioning purposes. NHS England was granted a 251 exemption last April, and that may lead to identifiable data being used at a national level, a regional level, in the area teams and in the clinical commissioning groups. Is that something that the Government should address?

[Barbara Keeley]

Indeed it is. There is a question about why CCGs have to have identifiable patient data, and there is a lot of concern about that, which my hon. Friend is right to raise.

We expressed our concerns, but they have been compounded by reports of use of data unknown to the public. The Minister was unwilling to answer the point I wanted to put to him earlier in the debate about how the HSCIC will treat organisations such as BUPA, which are insurance providers as well as providers of health and care. I hope that he will answer that question when he winds up the debate. BUPA is one example, but there are other companies that have multiple functions—some of them are straightforwardly commercial and others involve health and social care—and there is scope for confusion if those firms apply for and obtain access to the data.

The revelations we have already had show that HSCIC does not have accountability, transparency or sufficient control over releases of patient data. In our Committee inquiry, it was put to HSCIC and to NHS England that one of the ways being recommended to ensure that escapes of patient data did not happen, and to allay the fears and concerns we have expressed, was for HSCIC to run on the basis that it kept the database intact and did not download datasets outside the information centre. What it did was take in research queries and ran them. That would be much safer and that is what is done on secure systems in other places. A mechanism has been suggested and I hope it is being considered.

I appreciate the comments made by my colleague, the hon. Member for Totnes about not opting out, but a recent survey of 400 GPs found that 40% intend to opt out of the scheme because of a lack of confidence in how the data will be shared.

[Dr Wollaston]

Does the hon. Lady agree that we have an opportunity, in the next six months, to provide reassurance on some of these real concerns? Does she share my hope that GPs will change their position and that we should be doing everything we can, as opinion-formers, to encourage them to do so?

[Barbara Keeley]

I would like to think so, but I am not going to hold my breath. I think I am a lot more pessimistic than the hon. Lady. Indeed, we know that some GPs have been so alarmed that they want to opt their patients out of the scheme. They should be able to do that without penalty. It is up to Ministers, NHS England and HSCIC to rebuild that confidence, but they are not doing so at the moment. They seem to see what is going wrong as a communication or public relations problem. It is not a communication or PR problem; it is a very serious problem with regard to the integrity of what they are doing, and a lack of transparency and accountability. We cannot say that enough times.

[Sarah Newton (Truro and Falmouth) (Con)]

I have worked alongside the hon. Lady to try to improve our social care system, so does she not agree that it is important that we work on this issue so that GPs are confident about sharing data? Otherwise, how will we enable the integration of social care with the NHS in the community to give people the sort of care that I know that she and I, through all our work together in Parliament, want to see?

[Barbara Keeley]

Yes, indeed, but I cannot emphasise enough that I do not feel much confidence at the moment and I do not blame GPs for not being confident. They are, in data protection terms, the owners of their patient data. If they do not feel that their concerns have been allayed, we have some way to go. I will touch on that point in a moment.

There are fundamental concerns on how data will be shared and the Government’s amendments do not address them. The amendments would improve Government new clause 34, but broadly it offers no further protection. It seems that data could still be released to commercial bodies, such as private health care companies that are also health insurers, the pharmaceutical industry and private health care providers. We need assurances on that. As far as I can see in this debate, we have not had them.

The Government’s new clause will actually widen the dissemination of information to include the promotion of health. Promotion of health can take in all kinds of commercial companies, for example food and drink companies that say they have a public health campaign. This will cause more problems. It draws the purposes so widely that misuses would still be permitted, and even be given a statutory basis. The requirement that the HSCIC must have regard to the advice of the confidentiality advisory group is still an inadequate protection.

I have added my name to amendments (a) and (b), tabled by the hon. Member for Totnes, because they would narrow the purposes for which data can be disseminated. However, I remain concerned about the commercial exploitation of patient data. I support new clause 25, which highlights the seriousness of the offence of misusing patient data. We need a clear disincentive for institutional abuse of confidential patient data with appropriate penalties including, as the hon. Lady said, imprisonment. Imprisonment is appropriate for the abuse of confidential patient data.

--- Later in debate ---

[Jim Shannon (Strangford) (DUP)]

I was under the illusion that there would be five speakers ahead of me, but I am none the less pleased to make some comments on amendments (a) and (b) to Government new clause 34, and on new clause 25. I thank the hon. Member for Totnes (Dr Wollaston) for setting the scene, and the hon. Member for Worsley and Eccles South (Barbara Keeley) for her contribution.

My inbox, like many others, has been full with messages from various charities on different aspects of the Bill. Having sat on the Care Public Bill Committee, I can well understand many of their concerns. I received a briefing from Cancer Research UK, as many other Members did. It was informative and clear, and raised points that I do not believe have been addressed in the Bill and require greater clarity through amendment.

Along with Cancer Research UK, I warmly welcome the clauses that will introduce the Health Research Authority as a non-departmental government body. I have the highest respect for the Minister, but last night clarity on this was sought by the shadow Secretary of State, the right hon. Member for Leigh (Andy Burnham), the hon. Members for Easington (Grahame M. Morris) and for Worsley and Eccles South (Barbara Keeley) and me. With respect, I do not think that Hansard gives the clarification that right hon. and hon. Members, Cancer Research UK and Macmillan are seeking. I am hopeful that the Minister will today be able to give us that assurance and clarity.

Clarification of the amendment of section 261 of the Health and Social Care Act 2012 is needed to ensure that access to data for research is not restricted on the basis of the amendment. Cancer Research UK states:

“While we appreciate the context of this amendment and understand that the motive behind it is to avoid inappropriate disclosures of data, we are concerned that the wording of this is unclear. We would like reassurance that access to data for researchers is included under ‘provision of health care and adult social care’ and that access to research data will not be restricted on the basis of this amendment.”

I hope the Minister will be able to provide assurance on that.

Cancer Research UK is one of the largest funders of clinical research in the United Kingdom of Great Britain and Northern Ireland. It is currently running more than 240 clinical trials, which in 2012 recruited some 37,000 patients. Clinical research is important to find drugs that work and treatment that saves lives. Today in Westminster Hall, we were made aware that with better access to new cancer drugs, 5,000 more people would be alive today and that many more lives could be saved. It is essential that we develop an understanding of both new and existing treatments, and that they are offered through the NHS. We therefore want to see a regulation and governance system in the NHS that promotes and supports research, while also protecting patients.

There has been significant controversy surrounding the proposed care data upload of GP records to the Health and Social Care Information Centre and there have been at least two debates in Westminster Hall on these issues where Members have expressed their concerns strongly. Concerns have been expressed that the public have been insufficiently informed about this upload and that data may be released inappropriately, for example to insurance or marketing companies. I know the Minister replied last night to my intervention, but the doubt lingers even today within Cancer Research UK, Macmillan Care and other charities that had expressed initial concerns. I have concerns regarding the nature of the release, but it was never my intention to restrict data going to the likes of Macmillan or Cancer Research UK to aid in their fight against the scourge of cancer.

[Barbara Keeley]

I read a blog article this morning written from the point of view of people with disabilities who had real concerns about the mention of insurance providers. It is often very difficult for people with serious conditions to get insurance, even travel insurance, and the notion that their medical data are being linked to insurance information, or might be sold in future to companies that are insurance providers—even if those are health and social care providers—is a real worry for them. They are really fearful about this and I think we would see a mass opt-out by people who have that fear.

[Jim Shannon]

That is the issue, summed up in a couple of sentences. The Minister may look to his civil servants for some direction; he may have it already. If so, that is good news.

--- Later in debate ---

[Sarah Newton]

The hon. Gentleman has given yet another reason for the importance of collecting and sharing data in a way that helps to improve health outcomes. A further example is an inquiry into medical implants that was conducted by the Science and Technology Committee. Orthopaedic surgeons were able to keep a great many data relating to the types of implants used in, for instance, hip replacements, and to track, over time, the outcomes for the patients. As a result of that research, they were able to identify particularly problematic implants, and the information was shared among clinicians so that they could improve existing implants and develop new ones. Hip replacements have improved greatly as a result. It is vital that we establish frameworks that give confidence to patients and to medical practitioners, so that such information can be collected and used to improve patient outcomes.

[Barbara Keeley]

The hon. Lady clearly supports such uses of the databases, but, as I said earlier, there is concern about the fact that this is going global. There are memorandums of understanding between countries, and the granting of access to one organisation seems to lead to its being granted to others. The whole thing could easily spiral out of control. Does the hon. Lady share that concern? I do not know whether her inquiry established any way of describing the system that would enable people to understand it and have confidence in it.

[Sarah Newton]

In many of our inquiries, we have looked into international collaborations between universities that are tackling some of the greatest challenges of our time. One example is research into various forms of dementia, and proteins in the brain that contribute not only to vascular dementia, but even to vCJD. We have concluded that in order to meet the huge challenges that those diseases pose to the whole world, we need to pool our resources across universities and research communities internationally. There is an increasing number of well-established protocols and sensible ways of reassuring patients and others about the use of their data. Such international collaboration makes it more likely that we can make discoveries that will drive improvements in people’s outcomes.

Frameworks and safeguards exist to enable universities and academics to collaborate. We should be careful about the language that we use in this context, because there has been scaremongering, and people are identifying all sorts of potential uses for the data for which there is not much evidence. We have been reassured several times today that the information would not fall into the hands of insurance companies and be used in a harmful way.

--- Later in debate ---

[Mr Stephen Dorrell (Charnwood) (Con)]

Mr Speaker, I take your rap across the knuckles in the spirit in which it was intended. I apologise to the House for being late today, due to a diary conflict. I hope I can claim that I do not arrive, speak and then disappear very often. My practice is to be here for a debate and to contribute and listen to it, and I apologise to the House for not matching that standard in this debate.

I am, however, grateful for the opportunity to speak in this debate, because a discussion about the way in which the health service handles data and introduces a culture that allows a freer exchange of data around the health and care system is fundamental to the delivery of more joined-up services—ultimately between the NHS and the social care sector—which is an objective that is espoused widely, and regularly repeated, in this House.

The Select Committee had a session at which NHS England gave evidence about the position it got to with care.data and the delay that was announced two or three weeks ago. Although there is a widespread view within the Select Committee that it is important to get better at handling data in order to allow the delivery of improved services, we also had a sense that NHS England, in its handling of the care.data programme, had not respected sufficiently the sensitivities both of individual GPs, as the hon. Member for Easington (Grahame M. Morris) was saying, and—more importantly, ultimately—of individual patients about the safeguards that apply to their data and the uses to which those data can be put.

I agree with the hon. Gentleman that it is important that the six months of additional breathing space NHS England has given itself is used to address those concerns, both within the service and among patient groups, about security of data and the safeguards in respect of which data are used as a result of a more open—in the correct sense of that word—use of data around the system.

[Barbara Keeley]

As the right hon. Gentleman was not here at the time, he will not know that I moved a manuscript amendment on better parliamentary oversight of the Health and Social Care Information Centre. It seemed to me—I wonder if he noticed this, too, in our Committee inquiry—that there were a great many individuals making decisions on key issues. Questions were put to the HSCIC about the pseudonymisation of data at source, yet the answer we got back was, “Well, I’ve looked at that, and I don’t support it.” The comments were all a bit “I”, but I would like a bit more of the “We” in oversight, and not so much of the “I”.

--- Later in debate ---

[Mr Dorrell]

First, we must concentrate the rationale for the programme on to patients. Looking back at how NHS England has got itself into this position over the past few weeks and months, I have lost count of the number of times I have been told how important the programme is for research. I absolutely agree that it is important for research, but the health and care system does not exist to support research; it exists to treat and care for patients. The logic of allowing commissioners to develop joined-up services that respond to individual people’s needs—and the pattern of need based on multi-morbidity to which the right hon. Member for Sutton and Cheam (Paul Burstow) has referred—must be placed centre stage in the justification for the improved handling of data in the health and care system.

I go back to the point that this must be about treating people, not conditions. We cannot achieve that if we do not have the information to allow us to connect up the experience of the patient between one part of the system and another. In regard to the logic behind NHS England’s plans, yes there is a research argument, but—with apologies to the research scientists—it is a secondary argument. The primary argument is that we must improve the services delivered to patients and service users.

[Barbara Keeley]

The hon. Member for Oxford West and Abingdon (Nicola Blackwood) has just mentioned the need to reassure patients; that is a big concern at the moment. I have here the transcript of the information I was given in the Health Committee, in which Max Jones of the HSCIC said of the care.data programme that the GP extraction services

“took great care to make sure that we only extract the coded information in those records and not the free text notes”.

However, the hon. Member for Totnes (Dr Wollaston) said earlier that there had been discussions in HSCIC meetings about extracting free text data. Is the right hon. Gentleman as alarmed as I was to hear that? Does he agree that, in the light of the need for reassurance, we do not need such revelations, news and other bits and pieces coming at us from every direction every day to make the whole fiasco worse?

[Mr Dorrell]

I am not going to comment on whether the free text data should or should not be part of the system, or on whether the safeguards are adequate. However, I agree with the hon. Lady absolutely that the one sure way of undermining public confidence in safeguards is to change those safeguards every five minutes according to whichever witness we are listening to.

--- Later in debate ---

Trust was damaged further when the Secretary of State claimed, incorrectly, that every house in the country had received a leaflet on care.data, informing them of the project, its purpose and how individuals could opt out if they wanted to. That is not true. A freedom of information request has revealed that NHS England did not ask for the leaflet to be classified as in “in exceptional circumstances”, so the leaflet has not been delivered to households registered with the Royal Mail’s door-to-door opt-out.

[Barbara Keeley]

My hon. Friend is making a good speech and laying out the issues clearly—he is talking about the junk mail leaflet that was not delivered to every household. It also did not have an opt-out form. As a member of the Health Committee, however, I am still getting queries from people who fear that even after opt-out data will still leave their GP practice to be used by HSCIC. Do we need to be assured about that as well?

[Mr Reed]

Absolutely. That is one of the real issues. As we have heard from Members on both sides of the House, absolute clarity is needed on such issues and on the data, which we as individuals own, from those who seek to provide that data to other people for other purposes. This goes to the heart of the matter, and the fundamental issue—that fundamental breach—is one of trust. My hon. Friend is absolutely right to raise that.

Trust can never be given with blind faith, but it can be built if it is based on accountability. That is what new clause 25 and amendment 29 seek to achieve. The new clause seeks to create a new, specific offence of the misuse of data provided by the HSCIC. Building on the schedule of offences in the Data Protection Act 1998, it makes it an offence to use data provided by the HSCIC for the purposes of re-identification. A person or organisation found guilty of that offence would be subject to an unlimited fine. In addition, it makes it a requirement for any organisation making applications for data from the HSCIC to disclose any previous convictions under the offence.

The purpose of the new clause is to help build public confidence in how individual patient data are used by ensuring that any person or entity who misuses the data is liable to significant criminal sanctions. Patients can then be assured that their privacy and the proper use of their medical data are of the utmost importance to Parliament, the judiciary and the NHS. The new clause would also place a duty on those convicted of misusing data to declare that conviction when reapplying for future data. In reality, barring some unforeseeable public interest, those guilty of misusing data once would be unlikely to gain access again.

In order to ensure a robust system, accountability for the use of the data must also cover those who grant permission for the data to be used. Clause 116 removes from the Secretary of State the duty to approve applications to use patient data for medical research. That is wholly and entirely wrong, and amendment 29 seeks to restore that duty.

In light of the letter from the Chair of the Health Committee to the Health Secretary, the emerging details of how patient data have been used and the rather strange pronouncement from the HSCIC that it will not say more about improper release of medical records until “later in the year”, the Secretary of State’s accountability for how patient data are used is absolutely critical. The use of patient data is a matter of huge import, and the issues surrounding it are enormous, too.

--- Later in debate ---

[Dr Poulter]

Of course strict criteria are in place under the 2012 Act about the use of data where a patient could be identified. The Health and Social Care Information Centre cannot randomly release data that would identify patients, except where there are specific public policy reasons for doing so, such as in the event of a flu pandemic or a public emergency. There are strong safeguards in place under that legislation to protect patient data. It would be wrong of the hon. Gentleman—I know he often inadvertently misleads himself in some of his conclusions and goes around in circles in his remarks—to confuse Members and to confuse the House. The legislation is clear. He has been in many debates on the matter over the past few weeks, and strong protections are in place to protect patient confidentiality and to prevent patients from being inappropriately identified.

I do not want to be drawn into individual cases, but the hon. Member for Worsley and Eccles South also raised the issue of the MedRed BT Health Cloud, which will provide public access in the United States to 50 million de-identified patient records from the Health and Social Care Information Centre in the UK. We have clarified the matter. The data referred to are not confidential, but are published anonymous data of the aggregate population—not at patient level. The data are available freely to any member of the public or organisation via data.gov.uk. There is no conspiracy about the data; they are freely available to any one of us in this Chamber or to any member of the public.

It is worth highlighting the powers of the Secretary of State, which the shadow Minister also raised in his comments. Let me reassure the hon. Member for Worsley and Eccles South in respect of the amendment that she has tabled today. Section 245 of the 2012 Act enables the Secretary of State to direct the Health and Social Care Information Centre to establish information systems—to collect data—including systems on how to carry out that collection.

The Secretary of State can also direct the Health and Social Care Information Centre to report on any matter about its functions. If concerns were raised about the issue of free text data, which my hon. Friend the Member for Totnes mentioned, the Secretary of State could pass on directions to the Health and Social Care Information Centre.

[Barbara Keeley]

The Minister referred to my manuscript amendment on parliamentary oversight of the actions of the HSCIC. I tabled that amendment late because there is a belief that the Secretary of State and the Minister have not been asking the right questions. It has taken the Health Committee and other Members making inquiries to bring out all the issues. We need to keep on doing that, which is why I tabled that important amendment. There was not time to do it in a timely way, but that is why it was done.

[Dr Poulter]

As a Member of the previous Government, it is a pity that the hon. Lady did not take these issues more seriously at the time. It has been left to the current Government to fix the problem through the 2012 Act and the amendments that we have tabled today. That is not good enough and she knows it. It is also the case that she has not read the 2012 Act properly, because I have just outlined the section 245 powers that the Secretary of State has. That is parliamentary oversight in anyone’s terms.

Finally, let me turn to amendment 29 tabled by the hon. Member for Copeland (Mr Reed). As he has said:

“The importance of such data in medical research, and in the synthesis of new treatments and better care, cannot be overstated. In research terms, more information about how people with certain conditions react to treatments can led to better research being undertaken, which uses resources more efficiently and improves a patient’s quality of life.” ––[Official Report, Care [Lords] Public Bill Committee, 30 January 2014; c. 513.]

I completely agree with that. It is important that we uphold a person’s right to confidentiality while enabling the use of information to improve the current and future health and care of the population, with appropriate safeguards to protect confidentiality.

The Health Service (Control of Patient Information) Regulations 2002 made under section 251 of the National Health Service Act 2006 modify the common law obligations of confidentiality. It allows researchers, public health staff and other medical practitioners to access information where there is no reasonably practicable way of obtaining consent to use such information for the purposes of medical research. That is in the interests of improving patient care or in the public interest.

Amendment 29 requires the Secretary State to give approval for the processing of confidential patient information for research purposes. In January 2011, the Academy of Medical Sciences published a review of the regulation and governance of health research. It criticised the complexity of the arrangements for regulating the use of patient information, saying that they are a significant barrier to research. None of us in this House wishes to put barriers in the way of medical research. The Secretary of State has already delegated the function of the approval of processing confidential patient information for research purposes to the existing Health Research Authority special health authority. The 2002 regulations as amended by this Bill would give the new HRA this function directly.

Under this Bill, the HRA would be responsible for overseeing the ethical review of health and adult social care research. As access to patient information may involve the consideration of ethical issues, it makes sense for the HRA to make decisions on applications for access to confidential patient information for research purposes.

Robust legislative safeguards ensure approval for access to patient information for research purposes is given appropriately by the HRA. These include a condition that the HRA may approve processing of patient information for research purposes only if approval has been given by a research ethics committee, established or recognised by the HRA, and a requirement that the new HRA appoints an independent committee to provide advice on applications to process patient information. This provides continuity for the committee known as the confidentiality advisory group, which I spoke about earlier in my opening remarks.

--- Later in debate ---

[Andy Burnham]

If the Minister gave councils budgets that enabled them to be more generous, they might have a chance, but drastic cuts mean that they cannot provide care that is worthy of the name. He will know of the fears of organisations that represent disabled adults of working age. The Royal National Institute of Blind People, for instance, fears that the move to retrench eligibility criteria to cover only substantial and critical needs will remove care from people with moderate needs whose support currently enables them to continue to work.

[Barbara Keeley]

I understand that the Minister is to visit Salford tomorrow. Perhaps he would like to talk to Salford city council, whose budget has been cut by £100 million over the last three years, about how it might be more generous. I am glad that my right hon. Friend has mentioned carers and their new rights, but how hollow do those new rights seem to carers in Salford, given that 1,000 people will lose their care packages this year and 400 will not qualify for them? That is a direct result of what the Government have done.

Care Bill [Lords]

Baroness 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.

--- Later in debate ---

[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.

--- Later in debate ---

[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.

--- Later in debate ---

[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—

--- Later in debate ---

[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.

--- Later in debate ---

[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.

--- Later in debate ---

[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.