Candour in Health Care

Liz Kendall Excerpts

Wednesday 1st December 2010 Westminster Hall

[Liz Kendall (Leicester West) (Lab)]

It is a pleasure to serve under your chairmanship, Mr Gray. Every 36 hours, NHS services are used by some 1 million people, the vast majority of whom receive safe and effective care. None the less, as in every other health care system in the world, not all care in the NHS is as safe as it could be, and too many patients are harmed by it, sometimes seriously and even fatally.

Modern health services are delivered in a highly complex, often pressurised, environment, and involve the care of many vulnerable and seriously ill patients. More than any other environment in which risks occur, health care is reliant on people taking difficult decisions that rely on judgments that are not always straightforward or clear cut. In such circumstances, things can and do go wrong. Sometimes, as I know from my own experience, the consequences can be very serious for the patient, their family and their carers.

Patients and their families have a right to know if something has gone wrong, to get an explanation of what has happened and to receive an apology and, if appropriate, compensation. As hon. Members have mentioned, it is also vital that professionals and NHS organisations learn lessons from mistakes to improve care for patients and, wherever possible, to save taxpayers’ money by reducing the cost to the NHS from clinical negligence claims.

During the past decade, important progress has been made on improving patient safety in the NHS. Last year, the Health Committee’s report on patient safety acknowledged that the previous Government became one of the first in the world to make it a priority to address patient safety across the whole health care system. A unified system for reporting incidents and learning from them was introduced, and it was centred on the national reporting and learning system and the National Patient Safety Agency. The creation of this system was, in a large part, down to the pioneering work of Sir Liam Donaldson, and I should like to pay tribute to him for his work on this vital issue.

Since the establishment of the data reporting system, the number of reported incidents has increased significantly, which is a good thing. At the last count, more than 3 million incidents had been reported, ranging from very minor incidents to the more serious ones. The NPSA has worked hard to improve patient safety, both nationally and within individual NHS trusts. I personally experienced such work when I was director of the Ambulance Service Network at the NHS Confederation. We set up a programme of work, with patient safety leads in ambulance service trusts, front-line paramedics, PCT commissioners of ambulance services and the NPSA to identify the particular areas of care where mistakes were being made—it is often in the handover period—and to share best practice to prevent such mistakes.

I question some of the comments that have been made this morning about managers wanting to cover up problems. In my experience, both managers and professionals have difficulties in blowing the whistle on their colleagues. I just want to put it on the record that the ones that I have worked with have wanted to be open and to learn the lessons.

My experience has shown me that the NHS needs to do more to improve patient safety. As identified by the Health Committee’s report and Ara Darzi’s next stage review, there is still huge under-reporting across the system, because, as hon. Members have said, there is too often a “blame culture” in the NHS.

I agree with the hon. Member for Carshalton and Wallington (Tom Brake) that this is not just an issue about hospitals. Primary care, which accounts for 95% of patient contacts with the NHS, accounts for only 0.25% of reported incidents. Although substantial progress has been made, patient safety is still not always a top priority for NHS boards. Most importantly, patients still too often feel that the NHS is not genuinely open and honest with them when a mistake is made.

In 2005, the National Audit Office’s 2005 report, “A safer place for patients” found that only 25% of NHS trusts routinely inform patients when an incident has taken place, and an astonishing 6% admit to never informing patients. Like other hon. Members, I have seen such practice in my own constituency. Patients feel that mistakes are not promptly or openly admitted to and they have to battle the system to—in the words of the hon. Member for Poole (Mr Syms)—“get at the truth”, which, so often, is the start of the healing process.

Last week, I went to a meeting at the University Hospitals Leicester NHS Trust with two of my constituents, Mr and Mrs Harkisan-Hall, who lost their son in the hospital’s neo-natal unit. It was only at the coroner’s inquiry that they found out that the two qualified nurses on the unit were both on a break at the same time, leaving a nursery nurse in charge of very vulnerable children. They felt that they had to battle to get that information, and they still have not seen the full reports of what the staff said. Like them, I believe that that is unacceptable.

[Mr Syms]

The hon. Lady makes a good point. One point that I meant to make was that if people do not hear what has happened, coroners can find it difficult to determine how someone has died. If people are not honest about what has happened to a particular individual, coroners do not have the full information.

[Liz Kendall]

In this particular case, interviews were conducted with the two qualified nurses. The trust did not read both transcripts together and did not see that both nurses were on a break at the same time. People are astonished that such simple things happen, and it is vital that we learn from this process.

Before I go on to talk about the duty of candour, I want to discuss two concerns about the Government’s policy in relation to patient safety. It is important that hon. Members do not look just at the duty of candour in isolation from what is going on in the rest of the NHS, including on patient safety. My first concern is the Department of Health’s decision to abolish the National Patient Safety Agency and to move responsibility for this issue to the new national NHS Commissioning Board. There are real concerns about whether the board will have the necessary skills, experience and time to focus on such a vital issue when it will also be responsible for setting NHS outcomes, assessing whether GP consortiums are delivering on those outcomes, commissioning a whole range of specialist services and managing contracts for all primary medical services. That is a huge agenda for any board, even without adding responsibility for patient safety.

Will the Minister tell us what resources and how many staff from the NPSA will be transferred to the NHS Commissioning Board? Which NPSA activities will the board take on? For example, will NPSA continue to publish patient safety alerts and bulletins and other guidance to identify key problems and help spread best practice? Will it also run workshops with leads for patient safety in individual providers, such as those I was involved with in the Ambulance Service Network? Will the national Patient Safety First Campaign, which was launched last year, and the annual patient safety week, which was held early this month, have the staff and resources to continue?

My second concern relates to the Government’s reorganisation of the NHS and fact that the service needs to make efficiency savings worth some £20 billion over the next three years, as the NHS chief executive said. The first report on adverse incidents in the NHS was drawn up by Sir Liam Donaldson in 2000. Its key recommendation was that the NHS must be open and honest and learn from its experiences. To do that, the NHS must become, as the report’s title suggests, “An organisation with a memory”. But the Government plan to abolish many of the very organisations that have worked hard to build this memory and understanding of how to improve patient safety.

If the NHS has to make efficiency savings worth some £20 billion, there will inevitably be job losses and posts frozen, some of which could include those staff who have worked hard to learn lessons from the mistakes that have been made in the NHS. How will the Minister ensure that the NHS retains its “memory” on patient safety when PCTs and strategic health authorities are being abolished, new GP consortiums are being established, community services are being transferred to different providers and staff posts are being frozen and reduced? In particular, what steps has she taken to ensure that managers and front-line staff who have knowledge and expertise in patient safety are retained in the NHS at a time when the Government want to cut management costs by 45% and make efficiency savings of £20 billion?

Finally, I want to talk about the duty of candour. As hon. Members have said, the introduction of a statutory duty of candour was first recommended by Sir Liam Donaldson in his 2003 report, “Making Amends”. I agree with hon. Members that there is a strong case to look again at this issue, as a Health Committee report recommended in 2009.

I think that it was the hon. Member for Carshalton and Wallington who said that too often the debate is split between those who want a statutory duty of candour and those who think the NHS should instead focus on creating a culture of candour. Of course, changing the practice of individual staff and organisations does not require legislation, but I think that we can see from existing laws, such as those that helped to reduce drink-driving, those that introduced the smoking ban and others, that legislation often plays a vital role in changing culture and behaviour.

Some professional bodies are concerned that a duty of candour would make it less likely that incidents would be reported. I am not convinced that that would be the case, particularly if the duty is combined with an

“exemption from disciplinary action for those reporting adverse events or medical errors—except where there is a criminal offence or where it would not be safe for the professional to continue to treat patients”.

That was the recommendation of Sir Liam Donaldson back in 2003.

Others question whether a statutory duty could be imposed when it might be difficult to specify or enforce sanctions. That concern has not prevented other parts of the world from introducing legal duties, including some US states, Sweden, France and Denmark. It is also worth noting that the Equality Act 2010, which was introduced by the last Government, imposes a number of legal duties on public bodies to consider the impact of their policies and decisions on different groups, without specifying what the sanctions will be if those duties are not complied with.

The final argument against a statutory duty of candour is that patients might end up trusting professionals less, because they have to report a mistake rather than because they want to. I think that the far greater risk for doctor-patient trust is the perception, and too often the reality, that professionals do not tell patients when things go wrong. I know that if a mistake was made in my own care, or in the care of one of my family or friends, I would want to know—and indeed I believe that I have the right to know.

To conclude, I think that the NHS has made important progress on improving patient safety and it has started to try to change its culture, to become more open and honest. However, the evidence shows and hon. Members have clearly demonstrated in this debate that the NHS is still not as open as it should be, not only with its own staff, but—crucially—with patients. The abolition of the NPSA, the huge reorganisation that the NHS is about to undergo and the future cuts in numbers of staff actually make a stronger case for having a duty of candour in place.

The White Paper, “Liberating the NHS”, says that the Government will

“require hospitals to be open about mistakes and always tell the patient when something has gone wrong”.

It also says that that requirement will be implemented by summer 2011. So I just want to ask the Minister to clarify whether the Government are therefore proposing a statutory duty of candour? Also, will she now agree to bring together patient groups, professional bodies, experts on the duty of candour in this country and abroad, as well as those who represent NHS trusts—such as the NHS Confederation—to discuss how we can all best move forward on this vital issue?

--- Later in debate ---

[Anne Milton]

The hon. Gentleman is absolutely right. That is terribly important. It is not only important to have Chinese walls and be seen to be separate; it is important to be separate. I will come to that point in detail in a minute.

Measuring openness is not as straightforward as measuring reporting. We welcome high levels of reporting, as they are an indicator of an open and supportive culture of patient safety, but there are still reasons why people within the NHS and organisations shy away from openness. Without a doubt, professionals who strive for excellence are reluctant to admit errors. The higher up the tree one is, the harder it is to say, “I’ve made a mistake.” All of us face that issue in our professional lives.

People may have unfounded concerns about possible admissions of liability, even though apologising when something has gone wrong is not in any way an admission of liability. The fine line between the two sometimes prevents people from saying what relatives want to hear: “I am so sorry this happened.” That is not necessarily saying, “I have made a mistake.” It is such a shame when professionals resort to a defensive stance, often encouraged by myths about where liability lies. Also, at times, they may fear reprisal, blame and even bullying.

We are considering options for introducing a requirement for openness and will make a decision in due course. The hon. Member for Southport felt that we were hesitating, and was concerned about possible evidence of Sir Humphreys in the Department. We are considering, not hesitating. It is important to get it right. Members have discussed the three options, but I will run through them quickly and mention a few relevant issues.

The first option is using what is in the existing Care Quality Commission registration requirement regulations. It is already mandatory for NHS trusts to report all serious patient safety incidents. We could also require organisations to demonstrate that they have met the openness requirement, which would not require new legislation. It makes sense to use existing means to detect and investigate trusts that are not as open as they should be. The counterargument is that that approach is not specific enough, and that the wording of the guidance would need to be made more explicit. We have seen many cases in which guidance has failed.

The second option involves introducing a new legal, statutory duty of openness explicit within the CQC regulations. That would send a clear signal about the importance of openness and provide patients and campaigners with a single clear duty that they could use to demand full disclosure. However, the Government want to create new legislation only when absolutely necessary, although when necessary, it should be done. We would need to ensure that any new legislation or new approach was not counter-productive. We want to make it easier for staff to come forward; we do not want new legislation to have unintended consequences.

The third option involves incorporating an openness requirement into the new NHS contractual, performance and commissioning processes, to which the hon. Members for Leicester West and for Southport referred. It certainly appears possible to pursue openness through the new commissioning arrangements. For instance, it could be written into standard NHS commissioning board requirements that providers commit to being open. The hon. Member for Leicester West asked whether the NHS commissioning board would have time to take a role on patient safety. In many ways, safety underpins all commissioning decisions. Any decision on any service commissioned should have safety wrapped around it. That is fundamental.

As with any complex matter, each of the options has its pros and cons. It is imperative that a decision on the issue is not rushed. I reassure the hon. Lady that campaigners and organisations have good access to officials within the Department, and I am sure that all their views will have been taken into account when a decision is made, because we are aware of the importance of getting it right. It is terrible to think that the first duty of the NHS is to do no harm. Safety wraps around everything that we do.

The hon. Lady also mentioned the decision to abolish strategic health authorities. I understand that SHAs are the performance managers of trusts, yet that did not help in Staffordshire. In many ways, bringing commissioning decisions closer to the patient within general practice will mean that decisions about care and its consequences rest where they should.

[Liz Kendall]

The Minister raises the important issue of Stafford and the lessons to be learned there, and says that the SHA did not take action. Obviously, we will wait for the outcome of the independent inquiry, but as responsibility will move to GP commissioning consortiums, can she tell us whether any of the GPs in the area raised concerns about Stafford, or whether any of them have submitted evidence to the inquiry? I am not aware that they have.

[Anne Milton]

I did not point a finger at the SHA; I pointed out that SHAs were performance managers. Where performance fails, one must ask oneself what was happening in the management of that performance that it could fail so abysmally. The hon. Lady must not forget that the GP consortiums will involve a much wider range of professionals in commissioning decisions than just GPs, including a lot of people involved in care. They will not necessarily consist only of NHS professionals. Voluntary bodies and other organisations that provide care will also have input.

The sad truth is that when things go wrong, relatives want to know what happened, as my hon. Friend the Member for Poole pointed out, but they do not always find out. They want the truth and honesty, but we often see precisely the opposite. Doors close, the shutters go down and NHS organisations resort to a defensive stance, sometimes quite aggressively. My hon. Friend mentioned his constituents the Byes and the Powells, who have campaigned endlessly for the truth and continue to campaign. I pay tribute to all the people, some of whom we do not know about, who use their own tragic circumstances to ensure that the same thing does not happen to others. Their efforts should never be underestimated.

NHS Reorganisation

Liz Kendall Excerpts

Wednesday 17th November 2010 Commons Chamber

[Mr Lansley]

The answer to the first question is yes. The answer to the second question is that we in the coalition Government collectively took the sensible view that form must follow function. If we arrived at a point at which people were being elected to primary care trusts which themselves no longer had a substantive role to play, because public health was rightly being transferred to local authorities—

[Liz Kendall (Leicester West) (Lab)]

Did you know that at the time?

[Mr Lansley]

We did know that at the time. [Interruption.] I will not engage in a conversation with the hon. Lady when she is intervening from a sedentary position. I am replying to my hon. Friend the Member for St Ives (Andrew George).

If we arrived at that point—a point at which GP-led commissioning consortiums were rightly leading on the commissioning of health care services—we would then find ourselves suggesting the election of people to a body that did not exercise any substantive responsibilities.

We therefore made a collective decision not to implement the policy in that way. The principle that we were pursuing was the strengthening of local democratic legitimacy in relation to health care—and, for that matter, social care—and that is exactly what we are going to do. We are going to do it through the health and well-being boards, and through the local authorities that are directly responsible for the provision of health improvement plans in their areas, engaging directly with local GP consortiums in the strategic commissioning functions and increasingly integrating health and social care.

Let me return to the point that I was making to the right hon. Member for Wentworth and Dearne. He ought to recognise, but does not seem to understand, that when I was announcing our intentions in 2006, the Government of whom he was a member were saying that these were the reforms that they wished to pursue. Tony Blair made a speech in June 2006 in which he said that NHS reform should be based on patient choice, independent sector providers, general practice-led commissioning and foundation trusts, yet the right hon. Gentleman’s motion today has left all that out. All those things that the Labour Government once supported, he, in opposition, now opposes.

The right hon. Gentleman’s motion is notable for what it has left out: it has left out the call for patient information and choice; it has left out any reference to the need for improving health outcomes; and it has left out a recognition, which the House should always reiterate, of the commitment of health and social care staff to the patients they care for. Particularly tellingly, it has also left out any indication of whether Labour supports or opposes our health service spending plans.

The right hon. Member for Leigh (Andy Burnham) has left the Chamber, but before the spending review he said to us, “Don’t protect the NHS budget; cut the NHS budget and transfer it to social care.” We did not do that; we did not do what the Labour party suggested. Instead, we have both protected the NHS budget and supported social care.

Before the election, the Labour Administration said, “Cut NHS capital budgets by 50%,” but the real-terms reduction in NHS capital budgets will be just 17%. They said, “Protect the primary care trust budgets but cut central budgets; cut research and development in the NHS; cut education and training,” but we are not doing that. We are protecting the resource funding for the NHS, and it will increase in real terms.

Oral Answers to Questions

Liz Kendall Excerpts

Tuesday 2nd November 2010 Commons Chamber

[Mr Burns]

There is not altogether the same comparison to be made with Monitor and foundation trusts, but I certainly understand and take on board the general principle behind my right hon. Friend’s question. I think that it is important that there is accountability.

[Liz Kendall (Leicester West) (Lab)]

The Government want to create about 500 new GP commissioning groups and scrap 150 primary care trusts, which the King’s Fund says will cost £3 billion. Yet, last year the current Prime Minister promised that

“there will be no more of the tiresome, meddlesome, top-down re-structures… The disruption is terrible, the demoralisation worse—and the waste of money inexcusable.”

Can the Minister tell us when the right hon. Member for Witney (Mr Cameron) changed his mind?

[Mr Burns]

May I begin by congratulating the hon. Lady on her elevation to this position? I know that in the past she has worked at the Department of Health, so her experience will no doubt help her Front-Bench colleagues who do not share such a background. However, she is factually wrong, although no doubt she will not be wrong in the future, because we have never said that there will be 500 consortiums. It will up to local decision making to determine how many consortiums there will be. The hon. Lady can believe what she reads in the newspapers, but if I were her I would wait to see what actually happens.

Epilepsy Services

Liz Kendall Excerpts

Tuesday 12th October 2010 Westminster Hall

[Liz Kendall (Leicester West) (Lab)]

It is a pleasure to serve under your chairmanship, Mr Streeter. I congratulate the hon. Member for Blackpool North and Cleveleys (Paul Maynard) on securing the debate. I particularly thank him and the hon. Member for South Thanet (Laura Sandys) for their brave, personal speeches, delivered with a frankness and honesty that is not always the hallmark of politics or politicians. Just by speaking about their conditions, they will have given strength and courage to thousands of people with epilepsy throughout the country. I am grateful to them for that.

Hon. Members have powerfully set out the scale of the problem and highlighted three key issues. The first is misdiagnosis: around 150,000 people are wrongly diagnosed with epilepsy or are diagnosed with the wrong sort of epilepsy. The second is poor quality treatment: patients may not see a specialist quickly enough and, because of the problems of misdiagnosis, thousands of patients take powerful drugs that are unnecessary or do not work effectively, and they must make repeated visits to their GP or go into hospital. Thirdly, because of poor diagnosis and treatment, there are unacceptably poor outcomes for individuals with epilepsy and for society as a whole. Only half of those with epilepsy live seizure-free, when the estimate is that 70% could do so. Of the almost 1,000 deaths from epilepsy every year, approximately 400 are avoidable—that is at least one unnecessary death from epilepsy every day of the year.

The estimated financial cost of that poor-quality care includes more than £20 million a year spent on incorrect drugs, and rises to more than £130 million if unnecessary GP appointments and hospital admissions are taken into account. That does not include the far greater costs to individuals and society as a whole for the thousands of people with epilepsy who cannot play a full role in their families, at work or in the community because they do not receive the care and support they need.

Following the efforts of patients and voluntary groups, many of whom are here today, understanding of epilepsy has increased in recent years. Last year, the all-party group on epilepsy met the then Health Minister, Ann Keen, for discussions, including on the findings from Epilepsy Action’s 2009 report, “Epilepsy in England: time for change” that NICE’s 2004 guidelines on epilepsy treatment are not being properly implemented in an estimated 90% of PCTs.

At a one-day conference for NHS commissioners in January, the then Minister spoke specifically about how to improve epilepsy services. She met specialist epilepsy nurses at the National Society for Epilepsy, and wrote to strategic health authorities asking them to consider how to improve services, including by increasing the number of specialist nurses. I understand that she intended to ask the Care Quality Commission to undertake a review of epilepsy services in the NHS. My first question to the Minister here today is: what plans do his Government have to increase the number of specialist epilepsy nurses and will they ask the commission to conduct that review into epilepsy services? My experience is that the commission’s reviews can make a real difference in raising awareness of such issues.

The key question today is whether the Government’s plans for the NHS will make the improvements that epilepsy patients desperately need. The key concern that we have heard about today is the future of commissioning. Clearly, PCTs have struggled to deliver high-quality care for patients with epilepsy, as they have with many less common conditions. That is and always has been a real problem in the NHS. How can the highest possible standards of care for less common conditions be delivered in every part of the country? If there have been difficulties in ensuring sufficient knowledge and expertise in 150 PCTs, that challenge will be even greater in the 500 commissioning consortiums that the Government want to establish.

The key issue that has been raised today is whether GPs have the necessary skills, awareness and interest in epilepsy services. Some do, and there are some good, expert GPs, such as those to whom the hon. Member for South Thanet referred, but many do not have the same skills and experience, and that is of great concern to patients with epilepsy. The expertise that does exist in PCTs is in grave danger of being lost. Many PCT staff who have been involved in commissioning are, understandably, looking for other jobs outside commissioning or outside the NHS. Will the Minister explain how he will ensure that GPs have the necessary skills and experience to identify and then correctly to refer patients to specialists? How will he ensure that GP commissioning consortiums have the necessary skills and expertise to commission high-quality epilepsy services?

My hon. Friend the Member for Scunthorpe (Nic Dakin) raised an important question. How will the Minister ensure that GP commissioning consortiums work with schools, local authorities and other care services? My local authority in Leicester has worked hard to build up relationships with the PCT, but that has been thrown up in the air and it must now develop relationships with individual GPs. That is a big challenge.

I want to make it clear that GPs must be more effectively involved in shaping NHS services. They are the first port of call for patients and their decisions affect 90% of spending in the NHS. Yet many GPs do not want and do not currently have the skills necessary to take on responsibility for commissioning £80 billion of NHS services. Despite claiming that they will end top-down reorganisation in the NHS, the Government continue to insist that all GPs must take on that role, and within a short time scale, but anyone who has been involved with the Government or the NHS knows that it takes a long time to change things in the NHS. PCTs are spending a huge amount of time trying to persuade GPs to become involved and to ensure that they have the right skills and expertise. Many people are worried, rightly, about whether PCT staff who are about to lose their jobs will want to put in that time and effort and, if they do, whether that time and effort would be better spent on improving patient care.

The financial costs of the Government's reforms are also significant. They have said that they will protect NHS funding in the comprehensive spending review, but the ageing population, increases in long-term conditions, and ever more expensive drugs mean that the NHS is still facing what the King's Fund and the NHS Confederation have called the biggest financial challenge of its life. Its overall budget may be protected, but it must make savings of £15 billion to £20 billion, and it has never before achieved that. Despite the Government’s claims that management will be cut by 45%, the King’s Fund estimates that the Government’s reorganisation will cost £3 billion. Will the Minister explain why his Government believe that yet another major, structural reorganisation is the best use of time and resources in the NHS, particularly in such financially challenging times?

Ultimately, what matters to patients and the public is that they get the best health care and the best value for money. The Government have said that outcomes in the NHS will be set out in the new NHS outcomes framework, and that the new national NHS commissioning board will be held to account for delivering those outcomes. The board will also take direct responsibility for commissioning some specialist services that used to be commissioned at regional level. The board will have a budget of more than £100 billion a year, but it is unclear how it will be held to account by Ministers or Parliament, who are responsible to the public for improving the NHS.

My final questions are as follows. Will the NHS outcomes framework include outcomes for epilepsy? Will the NHS commissioning board commission specialist epilepsy services, and will it draw on the expertise that was developed at regional level to do so? Will the Minister explain how the Government will ensure that the commissioning board has the necessary expertise on epilepsy services? Will patients be involved in determining outcomes and the commissioning board’s work? How will Ministers and Parliament hold the board to account? For example, if the board fails to include outcomes for services such as epilepsy, will the Government or Parliament be able to require the board to take action, or to remove individual members or the board as a whole?

Our debate today on epilepsy services will be mirrored in relation to a huge number of other conditions. People want to know how their condition will be improved by the planned changes. I am privileged that my first debate as a shadow Health Minister has been on this important subject, and I thank all hon. Members and the patients and patient groups who have come here today.

NHS White Paper

Liz Kendall Excerpts

Monday 12th July 2010 Commons Chamber

[Mr Lansley]

I am grateful to my hon. Friend. I will not go through the White Paper in detail now, but within it he will find that we look towards some GP commissioning consortiums taking an early adopter place from 2011-12, with consortiums generally taking, as it were, a shadow responsibility but not a legal responsibility in 2012-13, and then taking full responsibility, subject to the passage of the legislation to establish that, from April 2013 onwards—the point at which we anticipate that primary care trusts will be abolished.

[Liz Kendall (Leicester West) (Lab)]

The Minister will know that about 80% of patient contact with the NHS is in primary care. Will GP commissioning groups be allowed to commission GP and other primary care services from themselves, and if so, how will they be held to account for that decision?

Paediatric Cardiac Surgery

Liz Kendall Excerpts

Wednesday 7th July 2010 Westminster Hall

[Liz Kendall (Leicester West) (Lab)]

It is a pleasure to serve under your chairmanship, Mr Benton, and to have secured this debate on the Government’s review of children’s heart surgery.

I am sure that Members in all parts of the House agree that children who need heart surgery should have the best-quality care. Outstanding treatment is provided in many parts of the country, including at the congenital heart centre at Glenfield hospital in my constituency. My first visit as the new Member of Parliament for Leicester West was to the centre. I met staff in the paediatric intensive care unit, which is the seventh busiest such unit in the country, and staff on the children’s ward and from the cardiac nurse liaison team, seeing for myself the excellent professional and high-quality care that they provide.

I also talked to parents about their experiences, and they spoke about their shock at discovering that their child had a congenital heart problem, their fears about the operation and other procedures, and whether their child would survive. They talked about how they were coping with having a very sick child at the same time as holding down a job and looking after other children, particularly if they lived a long way from the hospital, as many of the parents do. Above all, however, they talked about the excellent care that they receive at Glenfield and about how the help and support from the doctors, nurses and other staff is second to none. I am proud to have Glenfield’s congenital heart centre in my constituency, and I express my gratitude to all the staff for their excellent work.

Although excellent care is already available in many parts of the country, experts in children’s heart surgery have for some while argued that change is necessary, to ensure that all children get the highest-quality care. Those experts include the Royal College of Surgeons, the Society for Cardiothoracic Surgery, the national clinical director for children, young people and maternity services, and the NHS medical director.

Children’s heart surgery is complex, and is becoming ever more sophisticated. Technological advances mean that care is becoming increasingly specialised, capable of saving more lives and improving outcomes for very sick children. Many clinicians, however, argue that services have grown up in an ad hoc manner and now need to be better planned to ensure that all care is safe and sustainable, and that surgeons need to treat sufficient children and have sufficient variety in their case load to be skilled and experienced enough to deliver care of the highest quality. They further argue that that is likely to require fewer and larger specialist centres. I have always believed that when changes in hospital services are necessary to improve patient care, we should have the courage to make them happen. I therefore welcome the review, which was initiated by the previous Government.

However, we need to ensure that the right principles and criteria drive the review, the right balance is struck, the right weight is given to the different criteria and principles, and the views of parents and families are properly heard. The Government document “Children’s Heart Surgery: The Need for Change” sets out four key principles to guide the review:

“High standards. All children in England who need heart surgery must receive the very highest standards of NHS care, regardless of where they live… Personal service. The care that every centre provides must be based around the needs of each child and family… Local where possible. Other than surgery and interventional procedures all relevant treatment should be provided as close as possible to where each family lives… Quality. Standards are being developed and must be met to ensure that services deliver the best care.”

I want to say more about those principles. My first point is about the number of surgeons and of patients required in each centre to ensure that all children receive the best possible care. “The Need for Change” stresses that each unit needs enough surgeons to provide care 24/7 and to avoid surgeon burn-out in this complex and demanding field. It questions whether units with two or fewer surgeons can achieve that goal, and states that four surgeons is “the magic number.”

The document also emphasises that surgeons need to treat enough patients and have a sufficient variety of cases to get the skills and experience they need, and to ensure that junior doctors have the best training. I fully accept the review’s concerns about units with two or fewer surgeons, but from talking to clinicians I understand that the clinical evidence on the optimum number of surgeons and the precise number of patients a centre should treat a year is the subject of some discussion, both in this country and internationally.

The centre at Glenfield hospital provides care 24 hours a day, seven days a week. It has three surgeons, treating about 300 cases a year. The staff in the centre are determined to continue to improve the quality of care that they provide, and are planning to appoint a fourth surgeon in the next few months and increase the number of operations to more than 400 a year. Nevertheless, Glenfield hospital and my local primary care trust are very clear about the fact that the centre already delivers high-quality, safe and sustainable care.

Wider clinical issues also need to be considered by the review. Many children who need heart surgery often have other complex conditions, so the review needs to consider the range of surgical and other specialties available in hospitals with children’s heart surgery units, and look at how they all link together. Glenfield deals with congenital heart defects in babies, and follows them through childhood and into adult life. Staff and patients say that that continuity of care is a crucial factor in delivering high-quality, personalised services, and it will become increasingly important as survival rates improve.

Glenfield is also the busiest of four ECMO centres in the UK. ECMO—extra corporeal membrane oxygenation—allows blood that has been drained out of a patient’s body to have the carbon dioxide removed and oxygen added before being returned to the body, thereby allowing the heart and lungs to rest and recover. Because of its ECMO facility, Glenfield can provide complex thoracic, or chest, surgery in children, especially for those who also have cardiac problems, as well as cardiac surgery for children who have reduced heart or lung function and who otherwise might not be able to have heart surgery, or recover.

Glenfield is the only centre in the country that provides ECMO for patients of all ages, from newborns to adults. It treated 180 patients last year, including 50 swine flu patients. ECMO is provided by the same staff who work in the congenital heart centre, so if the centre closed, Glenfield would lose its ECMO service too—a service used by patients across the country.

Another issue that the review must fully consider is access to care. “The Need for Change” says that most parents would travel long distances to ensure that their children got the best possible care. That is true. Parents would travel to the ends of the earth if they had to. Many parents whose children need heart surgery are, however, already travelling very long distances. Glenfield’s centre serves the entire east midlands, with outreach clinics in Nottingham, Derby, Mansfield, Peterborough, Boston, Grantham, Lincoln and Kettering.

[Mr Andrew Smith (Oxford East) (Lab)]

I congratulate my hon. Friend on securing the debate. I know that the time available is limited, but I wish to underline the importance of the point that she has just made in relation to our own heart centre in Oxford. It is critically important that there is close liaison and consultation with the parents whose babies are affected and who are campaigning to save the centres.

[Liz Kendall]

I agree absolutely with my right hon. Friend. Many parents and staff are rightly concerned about the implications of travelling longer distances, particularly in emergencies.

I am a former director of the Ambulance Service Network, and I know that paramedics are highly trained professionals—increasingly to degree level—who can provide lifesaving treatment for patients while taking them to specialist centres further away, but that is not always possible, and the review must thoroughly consider the implications of further travel for the lives that could and will be saved.

High-quality care is not just about standards of surgery, the links with other specialisms or the ability to access planned and emergency care. A recent event organised to discuss children’s heart surgery in Leicester was attended by more than 800 parents and former patients, and those present felt that many more people would have attended if the event had not been held mid-week and during working hours.

The families said that the help and support that they get from the nurses, doctors and other staff at Glenfield are outstanding, and the key point that came up time and again was the excellent communication and support provided by the centre. Parents spoke about how staff go the extra mile to explain diagnoses and procedures simply and clearly, often at a frightening and worrying time. Every child gets a diary that explains in a way the whole family can understand what care they have received. It provides something for the children to look back at when they are older.

Parents said that the staff were like members of their own family; they could ring them day or night if they had any concerns. That familiarity with individual patients and families is crucial. All the studies by groups such as the Picker Institute of patients’ experience of care prove that individual, personalised care and communication are vital. One young man said that the staff knew him as a person, not as just another case, and that he was worried that that would be lost in a larger unit or if his care were split between outreach clinics and other centres.

Families also spoke about the fantastic help they get from the Heartlink charity at Glenfield, which has raised money to provide accommodation so that parents can stay overnight with their children, a play area so that brothers and sisters can play while families are visiting the child, and day trips for the patients as they get older. Those wider aspects of care are vital to parents and patients, but are barely mentioned in “The Need for Change”. I urge the Minister to ensure that the review has fully considered those issues when it makes its recommendations.

The final factor that the review of children’s heart surgery needs to take into account is affordability. It must be driven by the need to improve quality, not to cut costs, and, in these financially constrained times, it must acknowledge that there will be costs associated with changing children’s heart surgery in England.

[Nicky Morgan (Loughborough) (Con)]

Like the hon. Lady, I have visited the Glenfield centre, which is close to my constituency. As the parent of a healthy child, I felt humbled by the care that I saw there. The point that she is making about cost is important, because we appear to be achieving neither safer care—there has always been safe care—nor more efficient care. I understand that the reconfiguration would be very expensive, and she speaks rightly about straitened economic circumstances at this time.

[Liz Kendall]

I agree absolutely with the hon. Lady. The costs associated with changing children’s heart surgery centres include not just physically expanding a centre’s buildings, beds and equipment, but retraining staff. When I went to Glenfield, I was told that many of the staff would not move if the centre were changed. It takes time and money to train new staff, particularly in such a specialised area, and the review must take that into account when it makes its recommendations.

[Sir Peter Soulsby (Leicester South) (Lab)]

I, too, congratulate my hon. Friend on obtaining this timely debate and on how she is expressing her concerns. She obviously has considerable understanding and experience of and expertise in these matters. Will she join me in asking the Minister to give an assurance that cost will not be the overwhelming issue that drives the decisions, and that the concerns, fears and wishes of parents and practitioners will be foremost in his consideration?

[Liz Kendall]

I very much agree with my hon. Friend. The review must not be driven by a desire to cut costs, and it must acknowledge that increased costs are likely with any change to services.

I welcome the Government’s review of children’s heart surgery and their objective of ensuring that all children get the best quality care, but I urge the Minister to ensure that the full range of clinical factors—not just the ratio of surgeons to patients—is taken into account as part of the review, in particular implications for accessing care, including in emergencies, and the knock-on effects for other specialisms. I urge him to ensure that other aspects of care that are critical to parents and families, such as the quality of communication, and the wider facilities and support, are properly considered.

I urge the Minister not to conduct the review on the basis of cutting costs—there will be costs associated with any changes—and to ensure that the views of parents, other family members and former patients are fully taken into account before recommendations are made in the autumn. I look forward to his response.

--- Later in debate ---

[The Minister of State, Department of Health (Mr Simon Burns)]

I congratulate the hon. Member for Leicester West (Liz Kendall) on securing this important debate on the national review of paediatric cardiac surgery. I pay tribute to the dedicated national health service staff who work in paediatric cardiac care. It goes without saying—hon. Friends will agree—that during the course of their working day they do tremendous and fantastic work looking after critically ill and vulnerable children.

As the hon. Lady said, this is a complex and understandably emotional area. In 2008, the NHS management board asked the national specialised commissioning group to explore whether a reconfiguration of paediatric cardiac surgery services in England could improve levels of safety and sustainability. There had not been a problem at a particular centre, but surgeons, other clinicians, parent groups and the media had raised concerns over the risks posed by the unsustainable nature of smaller surgical centres.

The national review aims to ensure that paediatric cardiac services deliver the highest standard of care, regardless of where patients live or which hospital provides their care. All 11 centres in England that currently provide paediatric cardiac surgery, including Glenfield hospital in Leicester, are being assessed as part of the review. The objective of the review is not to close paediatric cardiac centres—I assure the hon. Lady that this is not a cost-cutting exercise.

Surgery may cease at some centres, but they would continue to provide specialist, non-surgical paediatric cardiology services for their local population. The review seeks to ensure that as much non-surgical care as possible is delivered as close as possible to the child’s home through the development of local paediatric cardiology networks. I emphasise that no recommendations have yet been made about which centres should continue to undertake surgery.

Recommendations on future services will be published for the three-month consultation in the autumn this year. The trend in paediatric cardiac care is towards increasingly complex surgery, which requires large surgical teams that provide sufficient capacity to train and mentor the next generation of surgeons. The focus of the review is to develop services that are clinically appropriate, sustainable and safe.

As I said earlier, paediatric cardiac services are complex, and it has taken time to set up a transparent review structure that takes into account the views of patient and parent groups, and relevant professional societies. As part of the review, the commissioning group has held 10 stakeholder events. The invaluable contributions from parents and NHS staff will inform future stages of the review process.

The commissioning group has set a series of service standards, developed by experts, that take into account the contributions of parents and professionals. The standards cover the whole of paediatric cardiac services and emphasise the need for networks of providers to ensure a coherent service for children and their families. The current centres have been asked to assess themselves against those standards, and an expert panel chaired by Professor Sir Ian Kennedy has visited and independently assessed each centre. The standards will be subject to public consultation this autumn together with the recommendations for change.

I shall now deal with the standard for the numbers of procedures and of surgeons to which the hon. Lady referred. Questions have been raised about the evidence that underpins the standards for the minimum number of paediatric cardiac surgical procedures per year, and for minimum staffing levels. The recommended level of activity—between 400 and 500 procedures a year—is based on the level needed to provide good quality care around the clock while enabling ongoing training and mentoring of new surgeons. The professional consensus is that having four surgeons in each centre should enable services to avoid the risk of surgeons performing only a small number of some of the more complex procedures, which may not be enough to maintain their skills. Transforming a service from adequate to optimal requires sufficient volume, expertise and experience to develop what Sir Bruce Keogh calls “accomplished teams”.

[Liz Kendall]

Will the Minister provide the source for the recommendation of four surgeons and 400 to 500 patients a year? Which peer-reviewed journal provides the clinical evidence for that?

[Mr Burns]

As I said a minute ago, that recommendation is the consensus within the professional bodies. However, I am more than happy to give the hon. Lady a commitment that I will write to her after this debate to elaborate, providing as much extra detail as I can, if she believes that will be helpful.

Turning to the other criteria, the review will also take account of surgical centres’ physical location relative to others and the impact of reconfiguration on other important services, including the highly regarded ECMO or total life support service at Glenfield hospital in the hon. Lady’s constituency, which she described with such eloquence in her remarks. The final part of the review will involve centres’ ability to attract key clinical staff and their families. I hope I can reassure the hon. Lady that transportation options and travel distances will be evaluated, including travel times specifically. The Paediatric Intensive Care Society has advised on the issue, and we continue to investigate and seek advice. I appreciate fully the importance of the issue and the concern that it causes many families.