Health

Jamie Reed Excerpts

Monday 9th June 2014 Commons Chamber

[Norman Lamb]

The Government are not convinced by the argument for statutory regulation. The hon. Gentleman and I have had this debate many times, and I am happy to continue to discuss the matter with him.

In the wake of Francis, the Government are clear that poor or unsafe care will not be tolerated. There will be consequences for those who fail patients.

Opposition Members have criticised the lack of health legislation in the Gracious Speech, yet, as several of my hon. Friends, including the Members for Witham (Priti Patel) and for Rochford and Southend East (James Duddridge), have noted, people are not out there on the streets demanding a new NHS Act of Parliament; they want safe, good, compassionate care.

The Government remain committed to legislating on professional regulation when parliamentary time allows.

[Mr Jamie Reed (Copeland) (Lab)]

Will the Minister give way?

[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.

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[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.

[Mr Jamie Reed]

I always enjoy the hon. Gentleman’s emollient Dr Jekyll, in contrast to the Secretary of State’s Mr Hyde. Will he be following the Crosby diktat and keeping his head down and his mouth shut about the Government’s record on the NHS between now and the general election, or will the Liberal Democrats be doing something rather different?

Type 1 Diabetes (Young People)

Jamie Reed Excerpts

Wednesday 30th April 2014 Westminster Hall

[Mr Jamie Reed (Copeland) (Lab)]

I, too, thank my right hon. Friend the Member for Knowsley (Mr Howarth). I know how much this means to him and his family. I am genuinely grateful for all the work that he does in this regard.

This is a vitally important debate. We have had a tremendous debate today, involving hon. Members from all parties, providing us with a brief opportunity to deal with important issues that have stood neglected for too long. People with type 1 diabetes are not receiving the services they need or the support that they deserve; this is a fact. Often—let us be honest about it—we debate pure opinion, but it is an absolute fact that people with type 1 diabetes are not getting the level of services that they require.

I declare an interest as someone who has lived with type 1 diabetes for four years, after being hospitalized as an undiagnosed type 1 diabetic suffering from advanced diabetic ketoacidosis, two weeks before the last general election. The things people do to get out of it! I have never particularly enjoyed talking about the condition, principally because our medical histories are our own private business, but also because of the risk this poses of allowing others to define me as a person and as a politician. As the hon. Member for Torbay (Mr Sanders) has proven, reservations that people might have about people with the condition are unfounded. The longer I live with the condition—it is important to point out that this is a condition and not a disease—the more angry and frustrated I become with the treatment I receive and, more importantly, about the treatment that other people living with the condition receive.

The National Institute for Health and Care Excellence recommends that type 1 diabetics should receive nine key tests for diabetes care every year, yet thousands are missing out on these tests. In the four years that I have been a type 1 diabetic, only once have I received all nine tests. These tests are essential to ensure that diabetes is controlled. If left unchecked, diabetes can, as we heard, lead to blindness and kidney failure, and can increase the risk of developing cardiovascular problems, such as heart attacks and stroke. The National Diabetes Audit found that young people are the least likely of any group to access these nine treatments.

We have also heard that type 1 diabetes is a chronic, life-threatening condition that has a lifelong impact on those diagnosed with it and their families. It affects about 400,000 people in the UK, including 29,000 children, which is equivalent to more than 600 people in each constituency. Type 1 diabetes is not caused by lifestyle factors, such as obesity, poor diet or lack of exercise—I should know; I have just run the London marathon on behalf of the Juvenile Diabetes Research Foundation—and there is currently no way to prevent the condition.

People with type 1 diabetes rely on multiple insulin injections or pump infusions every day, just to stay alive; we know this. In 2014, a person with type 1 diabetes will on average undertake more than 2,000 finger-prick blood tests, have 1,500 insulin injections and count the carbohydrates in more than 1,000 meals.

A child diagnosed with type 1 diabetes aged five faces 19,000 injections by the time they are 18 years old. Since my diagnosis, I have been fortunate enough to meet many young people with the condition and each and every one of them inspires me. I am incredibly grateful for the work that they do through the Juvenile Diabetes Research Foundation and through Diabetes UK. Their advocacy is superb and their voice is becoming louder, but I say to them that it needs to become much louder still.

Good blood glucose control is hard to achieve. Type 1 diabetes reduces life expectancy by approximately 12.5 years in people with the condition aged 20 to 24 years old, compared with similarly aged adults without the condition. High blood glucose can cause very serious long-term damage to the body. On average, complications of type 1 diabetes set in 20 years after diagnosis, meaning that a child diagnosed at age five may begin to show signs of damage that can lead to sight loss, kidney disease, limb amputation, heart attacks and stroke by the age of only 25.

Just 6.7% of children with diabetes in England and Wales, 96% of whom have type 1 diabetes, are receiving their full set of annual recommended checks. That is a national scandal and it should shame these Houses of Parliament. Type 1 diabetes in young children presents more than a health burden. In 2011, members of the parent group, Children with Diabetes, reported that 60% of families had to change their working arrangements and almost half—48%—had seen a significant drop in their family income. Shockingly, as we have heard, more than half felt that their child had been bullied as a result of having type 1 diabetes.

Type 1 also brings with it an increased risk of depression, with 32% of people with type 1 diabetes showing signs of depression, compared with 16% in the general public.

In addition, type 1 diabetes leads to huge costs for the health service and the wider economy. The lifetime cost to the UK economy of everyone living with type 1 diabetes today is more than £55 billion. This figure is only going one way, and that is up. In 2014, conservative estimates suggest that type 1 diabetes will cost the NHS £1 billion directly and a further £1 billion to the wider economy more generally, excluding a number of treatment costs.

In 2008-09, the Medical Research Council invested £6.6 million in type 1 diabetes research, but unfortunately that fell to £3.9 million in 2010-11 and £4 million in 2011-12. In short, we are spending less than half the per capita figure spent in Australia—the hon. Member for Cities of London and Westminster (Mark Field) made this point earlier—and less than a third of the United States per capita figure, and the Canadians spend almost three times as much per capita as we do. Will the Minister explain why?

Incidence of type 1 diabetes is growing at a rate of about 4% each year. The recent report “Impact Diabetes” estimates that 650,000 people in the UK will live with the condition by 2035, if incidence continues at the same rate. That report also estimates that by 2035-36 the direct cost to the NHS of treating type 1 diabetes will be £1.7 billion and the indirect cost to the UK more generally will be an additional £3 billion.

The UK has the fifth highest incidence of type 1 diabetes in the world and it is increasing at an alarming rate. Research is the key to addressing this growing problem, but UK Government funding for type 1 research has fallen significantly. Let us be honest; this reduction is jeopardising our position as Europe’s number one place for type 1 diabetes research and investigation and I passionately believe that this is letting people with type 1 diabetes down.

The truth is that we are failing people with type 1 diabetes. As a nation we need a war effort—I am not ashamed to say it—in our work to improve treatments and services for people, particularly young people living with type 1 diabetes. We must ensure that every young person with type 1 diabetes receives the nine annual tests. Will the Minister explain how he thinks this can be done and what he will do about it?

Too often I hear from type 1 diabetics and their families that they cannot access insulin pumps, that blood glucose monitoring strips are being rationed and that it is getting harder to access primary care to get the help they need to manage their condition. Will the Minister take a close interest and deal with these issues where they arise around the country? There is huge, clear geographical disparity and it needs some close Government attention.

I will write in detail to the Minister about what needs to happen to improve the lives of people with type 1 diabetes. What is needed is more attention and understanding and more research and resource, to ensure that people with type 1 diabetes receive the care that they deserve. I look forward to the Minister’s reply.

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[Dr Poulter]

As I mentioned earlier, it is important that we learn from good practice, not just in the UK but elsewhere. A key driver of improving practice is clinical audit of the quality of services delivered. Outcomes for people with diabetes in England will also be assessed by the national diabetes audit, which includes a core audit, the national in-patient diabetes audit, a diabetes pregnancy audit, the national patient experience of diabetes services survey and the national diabetes foot audit, which is due to be launched this summer. Having that high quality comparative data, gathered through clinical audit from different care settings across the UK, will help us to understand where services are and are not delivered well. Audits in particular care settings always make recommendations for improvement, and the following year there is another audit. Exposing where care is good or not so good and putting in place plans for improvement on the ground will be a big step forward. At a national level, we can then look at which improvement plans have worked and which have been less successful. That learning is a good way of driving up standards and can be shared with Northern Ireland and other devolved parts of the United Kingdom, and indeed on an international basis. I believe that in this country we are historically good at collecting data. The purpose of national audits is to drive up standards of care, which is why NHS England is putting many more national audits in place throughout the health service. We will be able to compare what is done in different care settings, learn where care needs to be better and drive up standards throughout our health service.

We all understand the importance of the integration of mental health care and diabetes care for the young people who have serious health issues resulting from that combination of issues, which puts them at high risk of complications and premature death. The Government are investing £54 million over four years to enhance the children and young people’s improving access to psychological therapies—CYP IAPT—programme. That programme is helping to transform services through training in evidence-based therapies to support children and young people with a range of mental health issues. I am sure we all support that programme and want to see it expanded further.

I am glad to say that investment in type 1 diabetes research by the Medical Research Council and the National Institute for Health Research has risen from more than £5.8 million in 2011-12 to more than £6.5 million in 2012-13. The National Institute for Health Research is funding a £1.5 million trial focusing on children and young people with type 1 diabetes, which is comparing outcomes for patients treated with multiple daily insulin injections to outcomes for those using pumps, one year and five years after diagnosis. The report of the trial is due to be published in a few months. When we are looking at how best to support people with type 1 diabetes in leading as normal a life as possible, whether that be in education or in the workplace, it is important that we understand which interventions and methods of support work best. I am sure that that research will put us in a much better place on that.

[Mr Jamie Reed]

Is the Minister aware of the JDRF’s “#CountMeIn” campaign? It is calling for an investment of £12 million per annum by the MRC and NIHR to bring the UK in line with recent per capita spending by Governments internationally. Has he given any thought to that and if so will he comment on it?

[Dr Poulter]

With research funding there is often a bidding process, and it is up to organisations to bid for funding. I am pleased that the amount of money going into diabetes research is improving and that there is a now a project specifically on type 1 diabetes that is looking at the impact of different interventions and support—such as the use of pumps—on young people’s lives to see which methods work better. The emphasis is not just on clinical outcomes but on how young people’s experience and quality of life is affected, so that that is taken into account in how we look at diabetes. Health care research funding is moving in the right direction, and not just for diabetes—research funding has increased considerably over the past few years in a number of areas of health care, something that we should welcome.

As we know, NICE has national standards, but in the few minutes left I want to discuss the best practice tariff. The way that we set up commissioning arrangements and the best practice tariff will help us make a difference in the future. The tariff ensures that payment is linked to the quality of care provided, an important driver of how services are delivered to patients.

I will briefly set out aspects of the diabetes best practice tariff. A young person’s diagnosis is to be discussed with a senior member of paediatric diabetes team within 24 hours of presentation, to get early specialist support in place. All new patients are to be seen by a member of the specialist paediatric diabetes team on the same or the next working day, and each patient is to have a structured education programme, tailored to their needs and the needs of their family, to support them and help them understand how they can better cope with their condition and manage it themselves as best as they can. The tariff places a strong emphasis on multidisciplinary team work, including support from dieticians—we have heard about issues connected to eating disorders, and dieticians will have a key role on that. Many other aspects of the tariff focus on multidisciplinary working to put things on a better basis for young people with diabetes.

The right hon. Member for Knowsley raised a number of other issues in the debate; I will write to him about those matters. The issue is complex and important, but I hope that I have been able to offer some reassurance. The tariff and the increased spending on research mean that we are moving to a better place with our support for people with type 1 diabetes.

Oral Answers to Questions

Jamie Reed Excerpts

Tuesday 1st April 2014 Commons Chamber

[Mr Hunt]

I do not know the details of that particular case, but I am happy to look into it. I would say that a quarter of our hospital in-patients have dementia, and it is incredibly important that hospitals continue with a revolution in the way they look after people with dementia. There are some fantastic examples of that around the country, and I want to give them every support and encouragement.

[Mr Jamie Reed (Copeland) (Lab)]

GP access is a crucial element of out-of-hospital care, and the British Medical Association today said that the damage caused by this Government to the NHS has been “profound and intense”. Last week, the Royal College of General Practitioners said that more than a quarter of us now wait more than a week for an appointment with our family doctor. Within days of taking office, Ministers axed Labour’s guarantee of an appointment within 48 hours and took away the funding for evening and weekend opening. Under this Government, has it not got harder and harder to get an appointment with a GP? Let us have an honest, grown-up answer.

NHS Funding (Ageing)

Jamie Reed Excerpts

Tuesday 25th March 2014 Westminster Hall

[Mr Jamie Reed (Copeland) (Lab)]

It is a pleasure, Sir Edward, to speak under your chairmanship again, although I am afraid I am not a brother knight.

[Sir Edward Leigh (in the Chair)]

Give it time.

[Mr Reed]

I am even more afraid that it is a fraternity I will never be invited to join.

I thank the hon. Member for Suffolk Coastal (Dr Coffey) for securing this timely debate and for her opening remarks. Particular thanks should go to Government Whips for drafting so much of it. As she knows, the last Labour Government took a malnourished, failing NHS with an annual budget of approximately £30 billion and left it with a budget of more than £110 billion. The Conservative party voted against every increase in that budget. The same Labour Government oversaw the biggest ever hospital building programme in this country. It recruited tens of thousands more doctors and nurses. It inherited an NHS in which Bruce Keogh said people were dying waiting for treatment, and left a service with the lowest waiting times and the highest patient satisfaction rates in its history. Of course, there was much more to do.

I warn the hon. Lady against complacency. If she wants to see a health economy that has been plunged into crisis as a result of the Government’s policies, she should come to Cumbria where a crisis is unfolding, patients are paying the price and the Secretary of State is entirely disinterested in what is happening.

It is incredible to hear that NHS England does whatever it is told by the Labour party. That is extraordinary—this must be the most powerful Opposition of all time. Government Members should consider whether they are in office but not in power. A canard seems to be being established whereby the NHS England board have become the new reds under the bed. That fascinating argument will be rolled out between now and the next election.

[Dr Coffey]

I am not suggesting that anyone on the NHS board made a decision because they supported the Labour party—the reds under the bed. I am suggesting that the Labour party had the opportunity in the legislation to try to break away from party political interference in the formula and it failed to take advantage of that.

[Mr Reed]

I thank the hon. Lady for her intervention. I am not sure that I agree with her. Not for the first time today—I am not laying this singularly at her feet; she knows that I have great respect for her—we have heard the argument that I hear frequently from Government Members about there somehow being an enemy within. That does not deserve significant air time in this Chamber or on any other platform in this House.

It is a mark of how important these issues are that so many hon. Members attend these debates—not just today, but every time I have responded to a debate such as this in Westminster Hall. As we have heard again today, hon. Members passionately represent their constituents, often with moving testimony of constituents’ experiences. Today, we are discussing an issue that will affect many more people in the future.

The NHS is now more than 65 years old and to ensure that it is still here in 65 years’ time, it needs to adapt to the challenges of this new century. In 1948, the health challenges facing the UK were clearly very different from those we now face. As consistent improvements in medical knowledge have enabled more people to live better for longer, we are now tasked with providing a system to cope with an ageing society. Surely we all agree on that. One of the core principles of Labour’s plans for the NHS is that there should be a system fit for the 21st century. My right hon. Friend the Member for Leigh (Andy Burnham) will speak about that and the impact of an ageing society later today.

The hon. Member for Suffolk Coastal has raised on the Floor of the House and in recent Health questions the issue of the NHS funding formula and its impact on the elderly, and in my view the Government’s response has been poor. Late last year, NHS England consulted on a new funding formula based on recommendations from ACRA and we have covered such issues widely this morning. ACRA said:

“The objective of the formula is to provide equal opportunity of access for equal need. The basic building block of the formula is the size of the population of each CCG, and then adjustments or weights per head for differential need for health care across the country. The weights per head are based on need due to age (the more elderly the population, the higher the need per head, all else being equal) and additional need over and above that due to age (this includes measures of health status and a number of proxies for health status). There is also an adjustment or weight for the higher costs of delivering health care due to location alone, known as the Market Forces Factor…This reflects that staff, land and building costs are higher in”

for example,

“London than the rest of the country.”

I can point to life expectancy gaps in Cumbria exceeding 20 years. Healthy life expectancy ages in some areas of the country are well below 60 years and the local population, by default, will be younger than in areas where healthy life expectancy is much higher. Health funding in areas with low life expectancy will be disproportionately affected.

It is right that NHS England listened to the concerns not just of the Opposition, but of medical professionals and others about the funding formula, and it is right that deprivation will be taken into account as part of the formula, but that has not changed the overall direction of travel. Over time, money will still be taken from areas with the poorest health and given to those where healthy life expectancy is longer. I would be grateful if the Minister explained how that is justifiable. It is the very antithesis of the founding principles of the NHS that funding should be allocated disproportionately to more wealthy areas.

The pattern is also demonstrated across the public health spending formula. Areas such as Westminster and Kensington and Chelsea receive in excess of £100 per head more than my own county, Cumbria, despite Cumbria’s having some of the greatest health inequalities in the country.

[David Mowat]

Just to get clarity, is the hon. Gentleman’s position that ACRA’s formula was wrong and therefore should not have been implemented, or would he have liked to have seen it implemented over time?

[Mr Reed]

I will come on to that question. The funding formula on its own is a blunt tool that will struggle to address intricacies within a health economy as varied as the one in England and, therefore, more needs to be done at the interface between medic and patient to improve care for older people.

Funding is crucial, but financial pressures mean that we have to use existing funding more efficiently. Day after day, we are getting repeated warnings about the sustainability of the NHS and the £3.5 billion reorganisation that nobody wanted and nobody voted for has left NHS finances on a knife-edge. As such, more has to be done with less and that requires more than small changes at the system’s periphery. Last year, more than half a million pensioners had an emergency admission to hospital that could have been avoided if they had received better care outside hospital.

A study undertaken by researchers at Imperial college London found that nearly a third of hospital beds are used for patients who might not have needed them if their care had been better managed, which shows that we should focus on improving community care services to allow older people to remain in their own homes. The CQC has also found a general acceleration in the rate of avoidable hospital admissions.

Pensioners tend to have at least one long-term condition and those over 75 tend to have two or more. As society ages and the number of comorbidities increases, we need a system set up to care for the whole person, rather than the individual ailments that have no regard for the person behind them. The system needs greater integration and better co-operation between services to improve care for older people and ensure that they can be cared for in their own homes, rather than being forced into hospital just because the services in the community are not good enough or, in some cases, are not there at all.

The Government, however, have legislated for competition and fragmentation—and, as a result, for service isolation. Cuts to council budgets have meant that community services have suffered and patients are paying the price. I see that every day in my constituency. To improve health and well-being for the elderly in our society does not require penalising deprived areas with an obtuse funding formula; it requires improvement in collaboration between primary and secondary care and improvements in community care services to ensure that people can get the treatment they need, but also live independently in their own homes.

Thus far, the Government have provided no real solution to the challenges posed by changing health needs. We need to introduce a system of whole-person care and to respond to the changing health needs of our society: for young and old, and for the poor and those not in poverty. To do that—I end on a partisan note that reflects the tone of the debate so far—we need a Labour Government.

Care Bill [Lords]

Jamie Reed Excerpts

Tuesday 11th March 2014 Commons Chamber

[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.

[Mr Jamie Reed (Copeland) (Lab)]

The hon. Lady makes an excellent case. The maximum fine for an individual breaching the data clause in the situation she describes is £5,000. Does she agree that that is not adequate?

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[Mr Jamie Reed]

It is a real pleasure to follow the hon. Member for Totnes (Dr Wollaston), my hon. Friend the Member for Worsley and Eccles South (Barbara Keeley), the hon. Member for Truro and Falmouth (Sarah Newton), the hon. Member for Strangford (Jim Shannon), who made a typically excellent speech, and the Chair of the Health Committee, the right hon. Member for Charnwood (Mr Dorrell). I am really glad that the right hon. Gentleman did not miss the debate. The Health Committee did some excellent work in considering the issues before us, as we have heard during our debates yesterday and today.

I rise to speak to new clause 25 and amendment 29, tabled in my name and those of my hon. Friends. We are discussing these in light of clause 116, the Government’s new clause 34 and the dramatic events that have led to the cessation of the roll-out of the care.data scheme since we first expressed concerns in Committee about how the Government were treating the implementation of this vital project.

Let me be absolutely clear. Opposition Members—and, I am sure, most other Members—passionately want the care.data project to succeed. The failed implementation of the scheme to date is a matter of profound regret, and the shadow Secretary of State, my right hon. Friend the Member for Leigh (Andy Burnham), has offered cross-party support to help to salvage the project. We are serious about it and we want it to work. Many individuals have real and legitimate concerns relating to the use of their private medical records, but, as the academic and writer Ben Goldacre has pointed out,

“we learn how to save lives by studying huge datasets on the medical histories of millions of people. This information helps us identify the causes of cancer and heart disease; it helps us to spot side-effects from beneficial treatments, and switch patients to the safest drugs; it helps us spot failing hospitals, or rubbish surgeons; and it helps us spot the areas of greatest need in the NHS.”

He is undoubtedly right.

A growing population, an ageing population, the rise of co-morbidities and the necessary drive to improve the quality of care and the treatments available to patients mean that the success of the NHS will increasingly rely on the data to which it has access. The care.data scheme was meant to be designed to link together medical records from general practice with data from hospital activity, eventually extending to cover all care settings in which a patient receives treatment, inside and outside hospital.

The improvement of health care depends on removing the barriers between primary and secondary care, between the GP surgery and the district general hospital and between social care providers and traditional health care providers. Integration is key to meeting the needs of patients, and the availability of integrated data is central to shaping the services that will meet those needs. It is in that context that the need for the care.data project should be seen.

Given the real and tangible improvements that such a project could provide to our health care system, as well as the clear public benefits and what I believe is genuine political consensus surrounding the project, it really is inexplicable that we should now find ourselves at this point as a result of the Government’s rank incompetence in its implementation. The tragedy is not that this failure will draw political criticism, heated argument or the condemnation of campaigners outside the House of Commons; it is that it risks the project and jeopardises the benefits that it could provide. That is the real tragedy. At stake here is the means by which we can improve the lives of millions of people. Also at stake is a way in which we can serve the people of our country by easing suffering, pain and distress. This is not simply an arid, technocratic Government data collection programme. The success of the project should be the concern of every single Member of this House. Why, then, has growing public fear about the programme led to the Government having to stop its implementation for six months? There are a number of reasons for that, and our new clause and amendment seek to address the issues that have led us to this point.

It is worth noting that many of the public and professional concerns that have led to the near-collapse of this vital project were raised in Committee. Unfortunately, the Minister described Opposition Members’ concerns as a “false debate” and a “straw man”. How he must regret those words. Had he listened to the concerns expressed by many in Committee, and had reasonable attention been paid to people with no party political axe to grind, we might well have found ourselves in a position in which the care.data scheme could have been successfully rolled out on schedule. As it is, the Minister has had to table a series of amendments to the position he was defending in Committee and, only weeks after he dismissed those widespread concerns, the implementation of the care.data scheme has ground to an enforced halt.

Given the need for the care.data scheme, and its likely benefits for patients, the Government should have adopted a profoundly different duty of care for the implementation of the scheme. The collection and use of data are becoming ever more contestable public issues. Whatever the data in question, when data relating to an individual are subject to collection, collation, analysis and investigation, individuals and society at large will always ask a standard set of questions: who wants these data; why do they want them; what will be done with them; what will the effect of this be; and in whose interests is this being done?

The sensitivity around personal information is always acute, but sensitivity and anxiety around personal medical information are understandably the most acute of all. When that sensitivity is set against the widely publicised issues relating to the National Security Agency of the United States, GCHQ in our own country and the broader emerging themes relating to how Governments in modern western democracies routinely gather and use data specific to individuals, the need for a considered, calm, detailed and honest approach to care.data could not be more important.

--- Later in debate ---

[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.

[Grahame M. Morris]

My hon. Friend is making important points and I hope that the Minister is taking note of them. Does my hon. Friend share my concern about the Minister’s assurances last night on the security of the data? The buck stops with the Health and Social Care Information Centre, not the Minister, but Ministers come and go, so it is easy to make assurances, as he might not be here next year.

[Mr Reed]

I absolutely share those concerns. We did not hear anything last night that reassured anybody who understands the Bill. Certainly, Government new clause 34 is not worth the paper that it was hastily written on, and I want to move on to that right now.

Surely it is not too much to expect the democratically elected politician who sits in Cabinet and is responsible for the national health service to be accountable for how the medical data that that service captures is used. Crucially, the Secretary of State for Health is accountable not only to this House but to the people of this country in a way that a quango cannot be and has never been. Such accountability can begin the process of building the trust necessary to ensure the success of projects such as care.data. Without that, QED, the Secretary of State is asking Parliament and the people of this country for permission to remove democratic accountability from how their confidential medical data are used. The implications for the use of patient data in any project are utterly toxic.

I said earlier that it would be tragic if the Government’s failings were to continue to contribute towards the erosion of trust in care.data. Sadly, the Bill provides scope for other regrets. Part 1 seeks to make worthwhile but modest improvements to our care system, falling a long way short of the concept of whole-person care articulated by Labour. The Government new clauses and amendments that we are now discussing, however, and clause 119—the hospital closure clause that we will discuss later—fundamentally disfigure what is without doubt a worthwhile Bill. Perhaps that shows us the two sides of the coalition in the ministerial team. We shall see. None the less, it is a cause for regret.

Trust is at the heart of Government new clause 34. Yesterday, the Minister tried to reassure the House that the new clause would provide the safeguards that people require for the protection of their confidential medical data. He demonstrably failed to do that. Challenged time and again to illustrate how his new clause would facilitate the claims he has made for it, or improve safeguards for patients, he could not do so. Next time, it might be a good idea if the Secretary of State could get the same person to write both the Government amendments and the Government press release, because the amendments and the new clause do not provide what the Government claim they will. Sadly, that erodes trust yet further.

New clause 34 has been made necessary due to the appalling handling of the care.data project by the Government and the resulting erosion of public trust. The truth is that the new clause was hastily tabled again just before the deadline for amendments because the original, botched new clause 14 did not do what the Government said it would. Guess what? New clause 34 does not do what they say it will either. Subsection (3) would amend section 261 of the Health and Social Care Act 2012 to read:

“The Information Centre may disseminate (other than by way of publication), to any such persons and in such form and manner and at such times as it considers appropriate.

But the Information Centre may do so only if it considers that disseminating the information would be for the purposes of—

(a) the provision of health care or adult social care;

(b) the promotion of health.”

Yesterday, the Minister was given numerous opportunities to explain how this provision would prohibit private health insurance companies from gaining access to our data—he could not do so. The new clause provides for entirely elastic definitions that, in practice, will have a limitless application.

What happens when a private health insurance company requests information from the HSCIC on the basis that it was going to conduct specific controlled, randomised assessments of the impact of physical activity on various age groups in order to promote and recommend appropriate physical activity to its policyholders— perhaps with a view to reducing their premiums? That is clearly being used to promote health and well-being, so how would new clause 34 stop it? It would not—under the proposed wording, it would be facilitated. Once such a company has the data, what prevents it from using them for other means? Under our new clause 25, such use would be a clear offence, but sadly the Government have offered no such safeguards.

It is no wonder the public cannot trust Ministers. Just a few weeks ago, in Committee room 9, the Minister assured me and the rest of the Public Bill Committee:

“There are strict controls about the release of potentially identifiable information; for example, that type of information would only ever be released to approved organisations for approved purposes”.––[Official Report, Care Public Bill Committee, 30 January 2014; c. 516.]

Yet these strict controls fail to appear time and again. The only comfort offered to the public is that those issues will be resolved by regulations drafted by Ministers in whom confidence and trust has been lost—that is not good enough. With that in mind, can the Minister explain who signed off the release of data covering 47 million patients that were obtained by the Institute and Faculty of Actuaries? Such issues must be addressed, and it seems likely that when he eventually responds to the Chair of the Health Committee, the Secretary of State will give cause for yet further concern about how patient data are being used.

In responding to the news about that massive data breach, a Department of Health source stated:

“The rules changed last year so this would no longer be allowed. Information like this can only be accessed now if there is a clear benefit to improving health or health systems.”

It is chaos: if the rules have already been changed, the new clause tabled in haste by the Minister is full of superfluous subsections. Why does he need to change the rules again if they have already been changed?

We have a golden opportunity to get this right. The more that patients allow their data to be used, the greater the positive effects of care.data. These issues will not be resolved today and they will not be resolved by any of the Government proposals before us. If we want care.data and schemes like it to work in the future, we need to establish trust. Getting this right will save lives. Accountability is critical when accessing and using the most sensitive personal data, and the whole House can send a message to the people of this country—that we understand their concerns, that we are serious about safeguarding their most private data and that we are determined to continue to improve our health services—by voting for new clause 25 and amendment 29.

[Dr Poulter]

I thank hon. Members for the many comments and pertinent points made during the debate, both last night and today, and I will do my best to respond to the main issues raised. In particular, I wish briefly to respond to a couple of points raised by the shadow Minister. He talked about rank incompetence, but let us remember that the previous Government wasted £10 billion on an NHS IT project that was not fit for purpose and did not work. So Government Members will take no lessons about information services in the NHS from Labour Members, given that their Government wasted £10 billion, which I would have rather seen spent on front-line patient care. Furthermore, Labour Members repeatedly raise the issue of the lack of safeguards, but they failed to put them in place when they were in government. Only this Government have put in place safeguards, doing so through the 2012 Act, which I outlined clearly in my contribution last night, and through the further reassurances provided by the proposals we are making today.

--- Later in debate ---

[Dr Poulter]

It was very clear, as NHS England has acknowledged, that the communication exercise put forward was not ideal. That is part of the reason why we are debating the issue today. I hope I have brought further reassurance to hon. Members about the fact that the 2012 Act does put in place robust safeguards, which were not in place under the previous Labour Government. We have put in place the safeguards through that Act and through the Government amendments we have tabled.

[Mr Jamie Reed]

Does the Minister accept any responsibility for this near disastrous collapse of the care.data scheme, or is it all NHS England’s fault?

[Dr Poulter]

As the hon. Gentleman will be aware, under the 2012 Act, NHS England has responsibility for much of the operational day-to-day performance of the NHS, and NHS England has accepted responsibility for the fact that it did not communicate some of the information about care.data in the best way. But I hope that by referring the House to the safeguards we have in the 2012 Act and the additional safeguards we are putting in place through our Government amendments, we can reassure hon. Members that data will be used for the benefit of the health and care system, and for the promotion of health.

I wish now to deal with some of the good points raised in the debate and I hope to bring further reassurance to hon. Members. My hon. Friend the Member for Totnes (Dr Wollaston) rightly asked about an issue that came up recently in the Health Committee: whether data would be allowed to be passed on to the Department for Work and Pensions. The overriding purpose of any release to the DWP could not conceivably be the provision of health care or adult social care in England or the promotion of health so, no, that could not happen under the 2012 Act or under the provisions we have introduced today.

My hon. Friend also raised issues relating to the HSCIC and free text. As the hon. Member for Worsley and Eccles South (Barbara Keeley) said, it was outlined in the Health Committee evidence sessions that the use of free text had been examined and had, in effect, been ruled out—I hope that my recollection is correct on that. To give further reassurance, may I say that the HSCIC made it clear that the General Practice Extraction Service that we have in place to support the extraction of the data from those GP systems for care.data has taken great care to ensure that we extract only the coded information in those records, not the free text notes, which patients may well have shared during consultations with their GPs? In addition, a number of explicit conditions were excluded from those extractions, including issues relating to HIV/AIDS; sexually transmitted infections; termination of pregnancy; in vitro fertilisation treatment; complaints; convictions; imprisonment; and abuse by others. Clear safeguards and reassurances have been established on those issues, and I hope that reassures my hon. Friend further.

--- Later in debate ---

[Mr Burns]

As always, my right hon. Friend anticipates what I am about to say and says it in a far more straightforward way. He is absolutely right to say that there will be exceptional circumstances; there has been one instance so far. In such circumstances, the health economy in a particular area will need to be looked at—not in isolation; that is impossible owing to the nature of patient flows and the delivery of care—in order to get to the bottom of the problem and solve it on the ground.

A number of hon. Members said that clause 119 was a vehicle for closing down hospitals or services while totally disregarding the wishes and needs of the local health economy and local people. I say to them with the greatest respect that they have—probably for genuine reasons—misunderstood the purpose of the TSA. I ask them to think again, because this is too important an issue to be politicised and used in a game of ping-pong between political parties, or groups within those parties, to try to score political points. Our sole aim must be to ensure the improvement and viability of services. Sometimes, tough decisions will have to be taken—because of changing patterns, or whatever—and in the overwhelming majority of cases, they will be taken through consultation and through the decision-making process in the local health economy.

We have been talking about the power of the TSA. I must point out, in the friendliest and gentlest way, that that power was not introduced into the health service by this Government. It was done, I think I am right in saying, by the right hon. Member for Leigh’s predecessor, and he did it for very good reasons. He accepted, as my right hon. Friend the Member for Charnwood (Mr Dorrell), the Chair of the Select Committee, said in his intervention, that there will be rare occasions when everything else has failed and this measure of last resort must be used. It is viable and reasonable to have that power as a measure of last resort, as the previous Government obviously thought; otherwise, they would never have put it on the statute book in their legislation.

[Mr Jamie Reed]

When this was tested in the High Court, the judge said that the Government were seeking to use the powers that the right hon. Gentleman has just described for a “strained and unnatural” purpose. Does he agree with that?

[Mr Burns]

The short answer to the hon. Gentleman, because I have the freedom of the Back Benches, is that I do not share that view. I was privy to the discussions that led to South London being put into special measures. That was done because there were real and significant problems to which it was impossible at a local level, within NHS London and elsewhere, to find a coherent—[Interruption.] The right hon. Member for Leigh says no. He was in opposition at the time these conversations were taking place.

Care Bill [Lords]

Jamie Reed Excerpts

Monday 10th March 2014 Commons Chamber

I could elaborate further on these points, but I am conscious of the time. I hope that the Minister will be able to give us some further words of reassurance, not least about the discussion that I think he has had with the chair of the CQC since our deliberations in Committee.

[Mr Jamie Reed (Copeland) (Lab)]

I thank the right hon. Member for Sutton and Cheam (Paul Burstow) for getting this extensive group of new clauses and amendments under way. I understand that he shares a lot of the concerns felt by Labour Members, and the concerns of the Chair of the Health Committee have also been illustrated, as have those of other Government Members. It is essential that the Government take action to address the issues before the House.

The main issue I wish to raise this evening is the ability of the Care Quality Commission to inspect the commissioning of adult care services by local authorities. A number of new clauses and amendments have been tabled, and rather than examine each in extensive detail, it will be better for colleagues if I speak to the principles at the heart of the issue. It is, however, crucial that we understand the background to this group of new clauses and amendments.

In 2010, the Government announced the cessation of annual performance assessments. On application that has resulted in the CQC no longer inspecting the commissioning practices of local authorities. One consequences of that has been for local authorities to peer review voluntarily the services provided by neighbouring local authorities, and that in turn has resulted in the creation of a kind of opacity, or a climate of perverse incentives. Local authorities are more likely to give a neighbouring authority the benefit of the doubt on such issues. Co-operation has become the default in the sector, and although that should be welcomed to a degree, there is a disincentive for any local authority to raise issues of poor care in an adjoining local authority on which it might rely for assistance and other services. Given the financial strain on local authorities as austerity bites, they are forced to merge functions—and more—with each other, meaning that the disincentive is likely to persist for the time being at least.

As was pointed out and discussed in some detail in Committee, a strong effective regulator is as essential in the health and social care system as in any other sector—perhaps even more so. Only through thorough and effective monitoring and enforcement can patients have confidence in the services they receive, or exercise an informed choice when choosing those services. That is why the previous Government legislated for the creation of the first ever independent regulation of the NHS, and what is today the Care Quality Commission.

Regulatory oversight is an iterative process that by its very nature tends to be more active in taking remedial action than preventive action. It is the responsibility of every Member of the House to ensure that the regulator is given the tools and resources it requires to be as proactive as possible in preventing problems not just in the future following care failures, but before any failures occur in the first place. In short, the best regulatory systems are intelligent and proactive. That is why it is essential that the Care Quality Commission should be allowed proactively to inspect and review the commissioning of adult social care undertaken by local authorities. It is one thing to inspect the service provided—clearly that is important—but more information could be revealed, and better regulation resulting in better services would be enabled, if the regulator could inspect the process of service commissioning.

When a service fails, we need to understand the root causes of such a failure. How has a poor service come to pass? Is it down to a poor operator, a poor service provider, or is the local authority not commissioning the right service in the right way? Under the Bill, only once a pattern of poor care is identified can the CQC apply to the Secretary of State for permission to undertake a special review. There are a number of issues with that. First, the quality of care would have to be extremely low for a consistent period to allow a pattern of poor care to be identified, and that does not provide the best level of protection for service users suffering from inadequate care services. Secondly, the CQC would have to bear a significant burden to prove such a pattern before undertaking a special review. Such a burden will consume time and resource, while again prolonging the time during which service users may be receiving inadequate levels of care.

When the Minister responds, will he outline what threshold of proof would be required for a Secretary of State to grant the CQC permission for such a review, and say whether that has been modelled within the Department at any stage? Surely such issues have been considered. What mitigation does the Bill contain to prevent poor levels of care from continuing to be provided while investigations into care standards are ongoing? How does the proposed model fit the Ofsted model? On the face of it, it does not appear to fit it at all, because Ofsted does not wait for schools to fail before stepping in. I think—the Minister knows my views on this—that such a comparison has never been accurate and that strained and unnatural is a more precise description. The whole House will appreciate hearing the defence of a regulatory system that regulates only once failure has occurred.

As the Bill stands, it would appear that current provisions are best suited for remedial action to address instances of failure. The Bill addresses only actions to be taken following poor care, but does not give the necessary freedom to the CQC to act to prevent poor care from occurring in the first instance. That puts a limit on the practices of the CQC, and on application would mean that the inspection of commissioning would take place only in special circumstances. My fear is that we are knowingly legislating for a leaden-footed regulatory regime—hence the need for amendment 19.

The roots of care failures could be lodged firmly in the process of commissioning, and it is right that an independent regulator has the ability and duty to inspect all issues relating to the quality of provision before failures occur. Amendment 19 seeks to address the Government’s clear oversight in that regard. It would give the CQC more freedom to explore all aspects of care provision, rather than just quality, at the point where care is administered, and it would provide the scope for whole-system inspection. Problems can manifest much earlier in the process of care provision than the point at which care is received, and as such those problems must be dealt with earlier. The only way that is possible is for the CQC to be able to assess the quality of local authority commissioning.

If the Government seek to oppose amendment 19, I would be grateful if the Minister would explain why he thinks that the rather fudged clause in the Bill should remain unamended. The commissioning of services is clearly linked to the quality of service provided, so to limit CQC oversight to just one aspect, as in the Bill, is a flawed approach that knowingly turns a blind eye to other parts of the system, which are ultimately responsible for the standard of care provided.

The consequence of refusing to address the issues surrounding commissioning clearly results in the problems illustrated earlier by my hon. Friend the Member for Leicester West (Liz Kendall). A lack of oversight has meant that 15-minute visits and zero-hours contracts are quickly becoming the default option for care, rather than being used in extreme circumstances—we must all surely hear complaints about the consequences and effects of such an approach in our surgeries; I certainly do so.

Amendment 19 would give the CQC oversight of commissioning practices and lead to an improvement in care, and new clause 8 would put a duty on the CQC to undertake a review into commissioning practices within a year of the commencement of part 1 of the proposed Act. While that would be worth while in the short to medium term, to be useful in the longer term the CQC must be able to repeat inspections when it deems appropriate, not just when the Secretary of State requires it.

Clause 89 is entitled:

“Independence of the Care Quality Commission”.

Everyone across the House agrees with that principle except, it would appear, the Government in relation to this part of the Bill. Rather than giving the CQC independence to inspect commissioning services routinely, they are placing a shackle of ministerial approval on inspections that the CQC may deem necessary. That cannot be right, and to my mind it contradicts everything that the Government have said over the past 12 months regarding the need for CQC independence.

New clause 27 is tabled in the name of my hon. Friend the Member for Blaenau Gwent (Nick Smith). It would create an offence of corporate responsibility for neglect, which could see directors of care providers face jail if their management of a service led to abuse or neglect. I pay tribute to my hon. Friend’s work on this issue, and I know he works tirelessly helping those who have suffered as a result of neglect in the adult social care system. He does superb work in the House and is a credit to his constituency and his illustrious predecessors. It is right that we do everything in our power to ensure that those who abuse or neglect people in care are held to account. We put an inordinate amount of trust and faith in care providers, and if that trust is betrayed by wilful neglect or mismanagement, the perpetrators should face real punishment. These services are provided for some of the most vulnerable people in our society, and harm brought about by neglect must be punished. I would be grateful if the Minister would speak more about those issues, and say how the Government intend to address them.

[Charlotte Leslie (Bristol North West) (Con)]

I shall speak to new clauses 28, 29, 30 and 33, which stand in my name and those of other hon. Members from both sides of the House.

There is a huge amount to welcome in the Bill, and on Second Reading I welcomed the steps in part 2 to implement many of the recommendations in the Francis report. I said at the time that although there has been good progress, there remains a lot more to do, which is the reason behind the new clauses. I have tabled four new clauses—two on whistleblowing and two on patient safety. Those are both vital areas that we must get right.

I welcome the measures that the Government have taken to improve protection for whistleblowers, including changes to the Public Interest Disclosure Act 1998 and the banning of gagging clauses. Whistleblowers are not only individuals who are able to see where things have gone wrong when others around them have perhaps gone native and begun to accept the unacceptable, but they are people with the moral backbone and courage to speak out when things are wrong. It is hugely important that we have a culture where people do not need to become whistleblowers, because their complaints are taken up far earlier and they do not need to go down routes outside the usual complaints process. We should have a culture where people are encouraged to speak out, and where raising concerns is seen as a good thing.

--- Later in debate ---

[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.

[Mr Jamie Reed]

My hon. Friend is making an excellent, intelligent and informed speech. The charge has been made that pushing our proposals too far risks scuppering the project, but is it not the case that the more safeguards we can introduce to reassure the public, the better the prospects of its success will be—and, moreover, the greater the data sample will be, and the better the system will be as a result?

[Grahame M. Morris]

I entirely agree. I think that that is vital, because, as we have seen in the case of politicians following the expenses scandal, once public trust has been lost, it is a huge task to win that trust back. There is a mountain to be climbed. I therefore think it important that we get this right.

The Government have an opportunity to pause the implementation of the Bill in order to consult properly, and, in the Bill itself, to address issues that have been raised by Members in all parts of the House and by other interested parties. I believe that if there is to be public confidence in the scheme, the Government should make a gesture by supporting Labour’s new clauses, particularly new clause 25. Given that the misuse and identification of data are the prime concerns of the public, I think that it would be eminently sensible to make them an offence. That is not rocket science, is it? If that is the problem, why do we not address it directly by creating an offence? Similarly, if an organisation makes applications for data from the Health and Social Care Information Centre, it should have to disclose any previous convictions under that offence. I am a big supporter of transparency and the extension of freedom of information. Private health care companies should disclose information that is relevant in those circumstances.

It seems bizarre to insist that the public should allow their private information to be shared with organisations that are allowed to hide their chequered pasts in some cases behind the cloak of commercial confidentiality. Parliamentary accountability, too, should be introduced to the decision-making process. The Secretary of State should retain the duty to approve any applications. The buck should stop with the Secretary of State. If there is a serious commitment to win back the public’s trust on care.data, the buck should stop with the Secretary of State, rather than with a big and unaccountable quango.

It would be of great benefit to the public if data sharing were exercised in an accountable and secure manner. I have always been an advocate of investment in public health. For that to be effective, we need an evidence base on which to plan interventions. The scheme is set to be disrupted unless the Government can demonstrate that they are serious about protecting patients’ privacy.

--- Later in debate ---

[Grahame M. Morris]

I have considered that, and that is an important point. Compliance is important. Those issues should be addressed in the Bill. If we are to ensure that there is public trust, those points must be addressed.

[Mr Jamie Reed]

Does my hon. Friend share my concern and that of many GPs that the lack of necessary safeguards in the Bill may have an unintended consequence, particularly among the hardest to reach groups in society? Fear about the lack of safeguards in the Bill may stop them from accessing GPs and sharing their details and problems with them.

[Grahame M. Morris]

That is a huge danger. We have an opportunity to address that in this House this evening and when we consider the Bill further tomorrow. I personally am not advocating that people sign up to the opt-out clauses. That is important, but we need assurances to be able with confidence to support the Bill and the data collection proposals.

Adult Autism Strategy

Jamie Reed Excerpts

Wednesday 5th March 2014 Westminster Hall

[Mr Jamie Reed (Copeland) (Lab)]

It is a pleasure to serve under your chairmanship, Ms Clark. I will be fairly brief, after an excellent debate. I congratulate the right hon. Member for Chesham and Amersham (Mrs Gillan) on securing this important and timely debate. Her close links with this important issue were demonstrated emphatically by her bringing forward the Autism Act 2009, and her work on that legislation should be commended. It is worth mentioning that the 2009 Act is the country’s only piece of disability-specific legislation, and the fact that it reached the statute book is a credit to not only the right hon. Lady but the hard work of Members from all parts of the House.

In preparation for the debate, I have immersed myself in the Official Report of the Autism Bill’s passage through this place. Although there were some disagreements, for the most part the debate was incredibly consensual, and the tone of today’s debate has been similar. The legislation has achieved a great deal, and I pay tribute to all Members who were involved. I have often said, particularly in Westminster Hall debates, that Parliament is at its best when we can put partisanship aside to achieve shared goals. The 2009 Act is a clear example of that. It is an Act of Parliament of which all Members, especially the right hon. Lady, can be proud.

Section 1 of the 2009 Act placed a duty on the Secretary of State to prepare and publish an autism strategy, which had to include a plan for meeting the needs of adults in England with autism, and a plan for improving the provision of appropriate services by local authorities and the national health service. My right hon. Friend the Member for Leigh (Andy Burnham), then Secretary of State for Health, published a strategy on 2 March 2010 called “Fulfilling and rewarding lives: The strategy for adults with autism in England”. That joined up all aspects of Government, with no fewer than seven Government Departments contributing, ranging from the Department of Health through to the Department for Communities and Local Government and the Ministry of Justice.

As colleagues have mentioned, the strategy heralded a new approach across Government, transforming the way that public services supported adults with autism, as well as illustrating what Whitehall can achieve when departmental silo thinking is rightly jettisoned. Despite some meaningful progress since it was published in 2010, there is clearly much work to be done. A report by the National Autistic Society revealed that 92% of adults with autism said that they needed some degree of support, yet 70% said that they were not receiving the support they needed. That meant that almost eight in every 10 people who were not receiving support were forced to rely on their parents.

In his foreword to the 2010 strategy, my right hon. Friend the then Secretary of State for Health remarked that

“Autism is sometimes described as a ‘hidden disability’, not only because it has no physical signs, but also because adults with autism are some of the most excluded, and least visible, people in the UK.”

The testimony we have heard this morning underlines that reality. My right hon. Friend also stated that people with autism have been falling through the cracks between different organisations. The 2010 strategy has done much to identify those adults who need support, and improvements are being made, but it is clear that the new autism strategy must look to build on that progress.

Since the 2009 Act and the strategy in 2010, there has been considerable change. Sadly, that has not been consistent throughout the country, and many adults are still not receiving the care or support that they need. Levels of change, and action on necessary improvements, have not yet been sufficient; I do not think that there is any disagreement on that. The forthcoming updated strategy is an opportunity for the Government to maintain national leadership on implementation, and to guide local authorities to enact effective changes and improve services.

It is clear that the identification of those with autism is essential to the success of any strategy, and, to that end, it is right that those in public services are given the tools and knowledge that they need to identify people who may need support. That could mean GPs, other health care workers, police officers, teachers, bus drivers—as we have heard mentioned—or MPs. As a Member of Parliament, I see more and more people in my surgeries who either present at some point on the autistic spectrum or have family members or friends who do.

Although the strategy refers specifically to adults, one key way to ensure that adults are given the support they need is to ensure that they are given the support they need as children. The classroom offers a lot of contact between teachers and pupils, and that relationship is extremely important. Properly trained teachers could identify the needs of children earlier, meaning that proper support systems can be put in place as a child reaches adulthood. That is so important—it is vital.

As a parent, I see my children’s primary school making real headway in that regard, but provision in secondary education appears insufficient. I fear that secondary schools in particular too often miss an opportunity with regard to pupils with autism, and that is a great shame. I hope that the Minister will attempt to allay that fear, particularly given the advent of changes in our education system—free schools and more—that have accelerated the use of non-qualified teachers. Will he tell us how the needs of autistic pupils are being safeguarded in the new educational landscape?

As I bring my remarks to a close, I want once again to pay tribute to the right hon. Member for Chesham and Amersham for securing this debate, and for all her work on this issue over many years. I also pay tribute to all the Members who have contributed to this excellent debate. I hope that the Minister can shed some light on the few issues I have raised. We are striving for the same ends, and there is a remarkable crossover in the means by which we want to achieve them. We have the opportunity for a strong political consensus on this issue, and it is one that I sincerely hope we do not waste.

--- Later in debate ---

[Norman Lamb]

I absolutely agree that the NHS ought to be an exemplar employer. I suspect that the truth is that it is variable, with areas of good practice, but we do not know enough about the position throughout the NHS. The message should go out from this debate that the NHS has an obligation to lead by example and to demonstrate what can be done. Several hon. Members made the point that employing someone with autism might be quite challenging to start with, but the potential that that individual can offer is often enormous. An organisation could end up with a loyal employee who can contribute massively. The NHS needs to demonstrate that by leading from the front.

Everyone with autism should be

“able to live fulfilling and rewarding lives within a society that accepts and understands them.”

That was at the heart of the “Fulfilling and rewarding lives” strategy, and I stand firmly behind it. Furthermore, the work of the National Autistic Society’s “Push for Action” campaign has been hugely valuable in helping the Government to focus on the issues that need to be considered. I pay tribute to the society for inspired leadership. Other organisations have worked with us as well, including the Autism Alliance, Autism Plus and Ambitious about Autism, and I pay tribute to the work of all those organisations.

During our review, we ran a comprehensive exercise to listen and learn how the strategy is working. Nearly 2,000 people, including some on the autism spectrum and some who are involved in planning, commissioning and providing services, took part in focus groups, events and conferences, and more than 1,100 people with autism took part in an online survey. Local authorities worked with their partners and local people to complete a self-evaluation exercise on their progress. All this information, including individual returns, will be made available by Public Health England when the update of the strategy is published. As well as cross-departmental discussions, there has been contact with the different parts of the United Kingdom to discuss all four strategies, including that of Northern Ireland, to find common ground and to improve standards across the board.

Foundations for change have been laid and people with autism have increasingly been engaged locally in planning and designing services. Clear national guidance has been issued on the care, management and diagnosis of autism. We have heard about some great experiences that people have had in further education or with particular employers. My hon. Friend the Member for East Worthing and Shoreham made a good point about the need for employers to take the lead and to demonstrate best practice.

In some areas, there are great local autism teams and excellent diagnostic services. I noted what my right hon. Friend the Member for Chesham and Amersham said about her area and the GP who was taking the lead in that county to commission services. That is exactly what needs to be happening everywhere. I also heard of some great services being provided in Swindon, so there are some good things happening, but it was only five years or so ago that low levels of awareness and a lack of services were what led to the Autism Act, back in 2009. There are some real successes, but there is also much more to do to see the foundations translated into a greater difference to peoples’ lives.

When I have talked to people with autism and to families at events that have taken place during the review, I was struck by how variable the position is. In some areas, very little has happened. We now have the legislation in a good place and a good strategy, which is being updated, but translating that into a difference to people’s lives is where an enormous amount of work still needs to be done.

[Mr Jamie Reed]

When the Minister comes to publish the refresh of the strategy, will any care be given—as it should, in my view—to the understanding of NHS front-line staff, in particular in emergency medicine, and their identifying patients with autism? I have a series of examples from my constituency of people with autism accessing emergency services, receiving suboptimal care and getting into some pretty dangerous situations.

[Norman Lamb]

The hon. Gentleman makes a good point. I was going to come on to give an example of that. Sadly, we have also heard from many people with autism, and their families and carers, that things have not yet changed enough, or at all, for them. Gaps in provision or waits for diagnostic services continue to be reported. As my hon. Friend the Member for South Swindon made clear, diagnosis is the start of what can then happen; it is a condition precedent to an improvement in someone’s life, and is of course not enough in itself. Many people have told us that they have skills to offer employers that they cannot use. That is totally frustrating for them, and a waste for the individual and for the economy, as my right hon. Friend the Member for Chesham and Amersham made clear.

Oral Answers to Questions

Jamie Reed Excerpts

Tuesday 25th February 2014 Commons Chamber

[Mr Hunt]

My hon. Friend is right to campaign hard on that issue. I agree that the funding formula does not always do justice to people, especially those in sparsely populated rural areas. I know that NHS England is trying to do what it can to move to a more equitable funding formula, but it is not something that can be done overnight. I encourage her to keep pressing on that issue.

[Mr Jamie Reed (Copeland) (Lab)]

Welcome back, Mr Speaker. Easy access to GPs is a key part of out-of-hospital care for elderly and frail people. Days after the election, the Prime Minister scrapped Labour’s guarantee that gave patients a GP appointment within two working days, and took away funding that kept thousands of surgeries open in the evenings and at weekends. Now the Royal College of General Practitioners is warning that 34 million patients will fail to get an appointment. Will the Secretary of State listen to the Patients Association, bring back the 48-hour appointment guarantee and help older people to see their doctor when needed?

[Mr Hunt]

The reason that we got rid of that guarantee was that the number of people who were able to see a GP within 48 hours was falling in the last year in which the target was in place. It was not working, and that is why the British Medical Association and the Royal College of General Practitioners were against it. In the same survey that the hon. Gentleman quoted, the RCGP said it estimated that there had been a 10% increase in the number of GP appointments compared with when his Government were in office.

NHS

Jamie Reed Excerpts

Wednesday 5th February 2014 Commons Chamber

[Mr Hunt]

I will make some progress, because I need to make one final point.

All of these changes cost money, at a time when we are still living with the economic mess we inherited from Labour. None of these changes would be possible without the tough decisions we took on public spending in 2010, all opposed by Labour, which allowed the NHS budget to be protected and, as growth returns to the economy, secured for the long term.

[Mr Jamie Reed (Copeland) (Lab)]

Will the Secretary of State give way?

[Mr Hunt]

No. Had Labour won the last election, the NHS budget would not just have been cut at the outset; it would have been cut and cut again as the country was brought to its knees in a Greece, Portugal or Ireland-style collapse.

[Mr Reed]

rose—

[Mr Hunt]

Our amendment talks about the Francis report, which I know is desperately uncomfortable territory for the Labour Opposition—the 81 times they refused to have a public inquiry; the 50 warning signs missed by Labour Ministers and the officials working for them; the warning signs ignored at countless other hospitals now in special measures.

[Mr Reed]

rose—

[Mr Hunt]

It was a grim saga—

[Mr Reed]

rose—

[Madam Deputy Speaker (Dawn Primarolo)]

Order. Mr Reed, the Secretary of State has repeatedly made it clear that he is not prepared to give way to you, so perhaps we could move on with the debate. Perhaps you will find another way to make your point.

Oral Answers to Questions

Jamie Reed Excerpts

Tuesday 14th January 2014 Commons Chamber

[Dr Poulter]

It is true that many parts of the medical and health care work force can contribute to the delivery of high-quality care, and paramedics have an opportunity to do that. As part of our “Refreshing the mandate for Health Education England” initiative, we will be considering how we can make progress in that regard during the coming months and years.

[Mr Jamie Reed (Copeland) (Lab)]

I wish you and Ministers a happy new year, Mr Speaker. We certainly hope that it is a much happier new year for NHS patients.

In the last 52 weeks, almost two in 10 patients who arrived in accident and emergency units at the University Hospitals of Leicester NHS Trust waited for more than four hours. In 2011, the local risk register for Leicester, Leicestershire and Rutland primary care trust cluster warned that the Government’s reorganisation of urgent care services would lead to the

“risk of…inability to develop a resilient, predictive, high quality, Urgent and Emergency Care System.”

Given warnings from local risk registers about the disastrous impact of the Government’s reorganisation, and following the worst week of the winter so far for accident and emergency services, will the Secretary of State come clean, act transparently, and publish the warnings contained in the national risk register?

[Dr Poulter]

I remind the hon. Gentleman that the last Government never published risk registers. The policy that we have adopted is therefore entirely consistent with theirs. However, as the hon. Gentleman will recognise, it is not for Whitehall to micro-manage local commissioners and health care services. Decisions of that kind need to be made locally, by local commissioners working with patient groups in the best interests of patients and local communities.