Candour in Health Care

Debate between John Pugh and Robert Syms

Wednesday 1st December 2010 Westminster Hall

[Mr Robert Syms (Poole) (Con)]

It is a pleasure to serve under your chairmanship, Mr Gray. I start with an apology: I cannot possibly do justice in this debate to all those who have suffered as a result of mistakes made by the national health service. I know that a lot of people are paying attention to this debate, and I will do my best to make the case for a duty of candour in health care, particularly a statutory duty. That would be progress.

In the House, if an hon. Member makes a mistake, however outrageous, everybody thinks that it is fair enough as long as they apologise quickly. I want to put forward the arguments for why honesty is the best policy and why it is best to acknowledge that mistakes are made in medicine and in the health service. That is part of the medical process. If people inform relatives, put their hands up and say, “We made a mistake,” that is a far better way to proceed than what seems to have happened in the past.

I would like to thank Peter Walsh from Action against Medical Accidents for assisting me as I prepared for this debate. Over the next few weeks, Ministers are due to decide on their preferred option for honouring a commitment to require openness when things go wrong in health care. During the 2010 general election, the Liberal Democrat manifesto stated:

“We will: require hospitals to be open about mistakes, and always tell patients if something has gone wrong.”

I do not often quote from the Liberal Democrat manifesto, but it is probably important to do so under current circumstances and the coalition. That pledge was also included in the coalition programme for government:

“We will enable patients to rate hospitals and doctors according to the quality of care they received, and we will require hospitals to be open about mistakes and always tell patients if something has gone wrong.”

That has clearly been lifted from the Liberal Democrat manifesto. The White Paper, “Liberating the NHS”, stated:

“We will enable patients to rate hospitals and doctors according to the quality of care they received, and we will require hospitals to be open about mistakes and always tell patients if something has gone wrong.”

That shows consistency running from the original Liberal Democrat manifesto to the coalition programme for government and the White Paper produced by the Department of Health.

Those commitments have been widely interpreted and welcomed as going some way towards the introduction of a statutory duty of candour in health care. Such a move has been advocated for many years by patient groups and others, including the ex-chief medical officer, Sir Liam Donaldson. Recently, Ministers have made it clear that as well as the possible introduction of an explicit statutory duty of candour, they are also considering not altering or adding to the statutory regulations, but merely issuing new or refreshed guidance to existing regulations contained in the Care Quality Commission (Registration) Regulations 2009.

It is implied that that is more likely to be the favoured option because there is an extreme reluctance to add or alter statutory regulation. I will speak about those two options, with a view to encouraging support for the introduction of a statutory duty of candour. Action against Medical Accidents has campaigned on that matter for a number of years, and representatives from that charity met with a Health Minister to try to put forward their case about the right way to proceed.

Put simply, the situation is unacceptable. It comes as a shock to most people, particularly patients and members of the public, to know that health care organisations are in breach of no rules and will face no sanctions if they cover something up or decide not to inform a patient—or, in the case of a fatality, their relatives—that something went wrong during an operation or health care.

Probably more by accident than design, the current system tolerates cover-ups and denials. People ask how that can happen in a modern, ethical health service, and the vast majority of people would agree that honesty with patients and their relatives is a moral and ethical requirement. There is an abundance of guidance on the issue, and best practice dictates that honesty, or being open, is the only course of action.

We know that there are a million incidents in the national health service each year, about half of which cause some harm. Within those cases, there are many serious incidents, so it is a large problem. When something goes wrong, most people want someone to explain what happened to their relative, mother, father or daughter. In part, such behaviour is part of the professional code for individual doctors and nurses, and is recognised as a central component of an open and fair patient safety culture. However, the failure to be open and honest when things go wrong is not uncommon.

Although many trusts or PCTs do act openly, a significant minority tell patients nothing. Something must be done to provide parents and relatives with a flow of information and an honest approach. Patients and their families are unfairly denied crucial information about what happened during their health care procedure, and they may never learn the truth. If they do, they are often deeply traumatised by the initial dishonest response to something going wrong. It is not unusual to find people who have spent decades campaigning under difficult circumstances to find out what happened to one of their relatives.

If patients suspect that something has gone wrong but have to fight to get the truth, they lose all confidence in the health care system and are more likely to take legal and disciplinary action. The NHS and health care organisations have failed to develop a learning culture and the ability to learn from errors and make things safer. Instead, they have developed a culture of defence or denial; they do not want to see themselves in the newspapers.

The situation in England became even worse when the previous Government introduced the Care Quality Commission (Registration) Regulations 2009, which came into force in April 2010. That introduced a statutory requirement on health care organisations to report anonymously incidents that caused harm to the national incident reporting system. However, it did not include an equal requirement on the organisation to inform the patient or their relatives.

Therefore, an organisation is not currently in breach of the regulations if it covers up an incident from patients or relatives. It may be bad practice, but there is no real sanction as long as it sends an anonymous report to the system. An organisation will be ticked off if it does not send a report for the purposes of national measurement, but it will not be ticked off it fails to be open and honest with a patient or their relatives. Let me draw the Chamber’s attention to a document produced by Action against Medical Accidents entitled “The need for a statutory duty of candour in healthcare.” It is a good article for those who want to look at the more detailed requirements involved.

I pay tribute to my constituents, Derek and Joan Bye. As MPs, we deal with many constituents, but Mr and Mrs Bye have had to put up with a horror story following the death of their daughter, Helenor Bye, who died on 27 April 1978 in south Wales. There was a catalogue of medical errors. The parents were lied to, records were altered and their MP, John Morris, then the right hon. Member for Aberavon, held a debate in the House of Commons on 27 November 1979, volume 974, columns 1253-64. He called for a public inquiry, although that was turned down.

The situation was compounded by the fact that body parts were taken from Helenor Bye, some of which have been returned over the years. The last time body parts were received by the parents was in 2005. They have been through the most horrific period because of what happened to their daughter, what happened subsequently and, more importantly, because all along the line they felt that they were being lied to and that people were not being open and honest. Mr and Mrs Bye have become doughty campaigners for a more honest and honourable system of health care. They have also campaigned on their concerns about the drug Epilim. I cannot do justice to that campaign today, but if any journalist wants to know what can go wrong, I advise them to look at the case of Mr and Mrs Bye. They have had a very rough time.

Action against Medical Accidents calls for a change in the law and the introduction of a statutory duty of candour. It is called “Robbie’s law” because of the case of Robert Powell, who died on 17 April 1990, aged 10. His parents have campaigned for over 20 years to try and get justice. Similar things happened to them, such as changed medical records, and there was a catalogue of events, but they still do not feel that they have justice. Their campaign has continued under several Secretaries of State. The case is currently with the Welsh Assembly, and Mr and Mrs Powell are waiting to hear whether there will be a public inquiry into what happened to Robbie. Will Powell, who feels passionately about putting right what happened to his son and getting to the truth, has been a doughty campaigner for a long time. I pay tribute to him.

All the people whom we are talking about are, in their own way, fighting for the truth, not only to find out what happened to their loved ones, but so that such things do not happen again to someone else. This debate is about setting out a context and a better way of doing things, so that we have a much more honest and honourable system and families do not have to spend 10, 20 or 30 years going through absolute hell. Mr Bye told me that the start of the healing process is learning the truth and knowing what has happened to one’s relative. That is a very important point.

The Government have two options to consider. They can go for an explicit duty or for more guidance. Ministers often go down the guidance route. When the NHS constitution was being debated in the previous Parliament, the then hon. Member for Wyre Forest, Dr Richard Taylor, who served with me on the Health Committee, raised the issue of openness and whether we could go further down that route. He was informed by the then Minister of State, Mike O’Brien, “No, we can do it all through guidance,” yet guidance so far has not produced the results that we need.

Department of Health officials met representatives of Action against Medical Accidents and other stakeholders on 16 November 2010, when the two options were discussed in some detail. I shall go through the pros and cons of both. Option 1 is no new statutory duty but refreshed guidance in respect of the existing CQC regulations. The pros of that are that it would require no new legislation or change in the regulations.

[Dr John Pugh (Southport) (LD)]

Is not the difficulty with guidance the fact that guidance is already in place and any other guidance would simply reiterate what it says? Clearly, guidance by itself is not doing the trick in this case.

[Mr Syms]

The hon. Gentleman makes a very important point, because we have to change the whole culture of the national health service and I am not sure whether guidance will do that.

An argument can be made that the existing CQC regulations, backed up by clearer guidance, could be interpreted as making it a requirement to be open. For example, regulation 17 has been cited. It says that service users should be provided with adequate information and support in relation to their care or treatment. The guidance could clarify that that includes telling them if something has gone wrong. However, one of the cons is that, as the hon. Member for Southport (Dr Pugh) said, that would be in effect no different from the current situation. Such guidance and the existing regulations already existed when the policy to introduce a requirement was agreed. They were clearly not seen as sufficient then.

Given that the Department of Health was of the firm opinion previously that the existing regulations, even with the guidance alongside them, did not constitute a statutory duty to be open with patients when things go wrong—because at that stage they were not supporting a statutory duty—it is hard to see how that could be credible now.

Such a measure would be unlikely to be enforceable. Lawyers would no doubt have a field day if, given the above, the CQC tried to impose sanctions on a trust based on such a tortuous and dubious interpretation when the opportunity to be clear and specific had not been taken. Even if such a measure were enforceable, the CQC would be unlikely to give it a high priority, given the number of clear statutory obligations already spelt out in the regulations themselves, rather than developed by supporting guidance.

Option 1 would not have anything like the same impact as introducing a specific statutory duty, if it had any impact at all. The Department of Health would be trying to say, “This has always been the case, but we didn’t realise it and didn’t think it was important enough to make it clear.” That option would fail to deliver positive opportunities for sending a clear, unequivocal message about the importance of being open and would fail to support a major culture change. It would not deal with the bizarre situation whereby there has already been, since April 2010, a statutory obligation to report anonymously to the national incident reporting system patient safety incidents that cause harm, but there is no equal requirement to tell the patient or a relative. It would send the message that being open with patients is not important enough to justify a minor amendment to the regulations.

Option 2, which I prefer and think should be given serious consideration by the Government, is to introduce a specific statutory duty by amending the existing CQC registration regulations. That would send a clear, unequivocal message about the importance of being open, which would support and underpin other initiatives to develop a more open and fair culture. It would be enforceable. The CQC has confirmed that it would be practical for it to enforce such a measure. Of course, it would be a condition of registration with the CQC. It would have real impact: boards and management could not escape noticing the change or recognising the need to comply. At the moment, even when doctors or nurses want to be open with patients, sometimes the management of PCTs or of hospitals are less keen. We must send a clear message so that the whole organisation undergoes a major culture change in how it deals with patients.

Option 2 would balance out the existing statutory regulation where it is a statutory obligation to report anonymously patient safety incidents that cause harm but there is no equal requirement to tell the patient or a relative. It would not add to the regulatory burden on health care organisations, and I think that it would enjoy public confidence, which is a very important thing to have in this area. That option would be relatively easy to achieve. The con is that it would require a change in the regulations, so there would possibly be some legislation.

In my opinion, option 2 is the best way to go. It is not something that is supported only by a few oddbods; such a change has the support of many people, including many senior people in the medical profession. I know that there are concerns about compensation and litigation, but the evidence from the United States, where many insurers now do insist on a more honest system, is that when people receive an apology, they are less likely to sue. When they find out what happened to their relative, they accept that mistakes are sometimes made and they are less likely to pursue lengthy and costly legal action.

People are sometimes pushed into legal action by the sense of injustice that they feel when their relative has undergone harm or perhaps died in the course of treatment. They feel a sense of injustice and are then driven to take that action. Of course, many of the costs to the NHS are from the legal fees, not necessarily the money paid out in compensation.

I shall go through a list of some of those who would support a statutory duty of candour. I have already mentioned Sir Liam Donaldson, the ex-chief medical officer, who formally recommended a statutory duty in 2003. Harry Cayton, chair of the Council for Healthcare Regulatory Excellence, has also supported such a duty. The late Claire Rayner, who was a doughty campaigner on behalf of patients, and a former nurse, supported it. Professor Aidan Halligan, the former deputy chief medical officer for England, who is currently chief of safety at Brighton and Sussex University Hospitals NHS Trust, is completely supportive of the proposal. There is also Sir Graeme Catto, the immediate past president of the General Medical Council; Sir Donald Irvine, a past president of the GMC; Sally Taber, director of Independent Healthcare Advisory Services; Cure the NHS; Patient Concern; and Sufferers of Iatrogenic Neglect. There is broad support in the LINks—local involvement networks—organisation for the view that what has been described is an important thing to do.

In recent years, we have become aware of a major disaster at Stafford hospital. It has affected not one or two people, but hundreds of them. Of course, it has been the subject of much debate, many statements in the House and a lot of real concern, but had there been a statutory duty of candour, the management of Stafford hospital would not have been able to get away with the poor standards of treatment and nursing and the fact that many hundreds of people lost their lives. Such a duty is a very important and practical measure, and if the NHS is to mean anything to the people of this country, being open and honest with those who have suffered as a result of what are sometimes unavoidable accidents is the best way to proceed.

There are clear benefits to introducing a statutory duty, and there is an historic opportunity in that regard. I listened to my right hon. Friend the Secretary of State talking over the weekend about more transparency. Introducing such a duty would be a brave step, because all the advice from people in the Department of Health would be, “Careful, Minister. Don’t do anything that might have long-term costs.”

However, in the modern age—an age of freedom of information, when thousands of documents appear on the internet—it is not unreasonable that a cornerstone of the NHS in this century should be that people are up-front and honest, and tell the truth when something goes wrong. Things inevitably do go wrong—not necessarily deliberately, but simply because that is the way of the world and medical science. People can then understand what has happened to their relatives.

As my constituent Mr Bye said, “The start of the healing process after the loss of a loved one is to know the truth of what happened.” It is a very poor thing if Governments cannot tell the truth. One has to acknowledge that truth has not always been the essential component of the NHS that it should be. I propose that the Government give serious consideration to a statutory duty of candour, because that is the best protection for those who use the health service and for higher standards. The best protection is that all of us believe in honesty in public life.

--- Later in debate ---

[Dr John Pugh (Southport) (LD)]

I thank the hon. Member for Poole (Mr Syms) for introducing this important and timely debate and for putting the Government’s dilemma so succinctly and accurately. I also pay tribute to my hon. Friend the Member for Carshalton and Wallington (Tom Brake), who has done as much as anybody in this place to raise the issues of a duty of candour and patient rights.

I do not know whether anybody caught Ian Hislop’s programme about do-gooders on the BBC this week, but in it he described the creation of the journal The Lancet. It was set up by a young doctor, who, among other things, wished to expose some of the deficiencies in the appalling surgical practices at that time. He was greeted with wholesale acrimony from much of the medical profession and he was successfully sued. That shows that there is resistance in most businesses and professions to acknowledging error.

In an excellent book published some time ago, the sociologist Erving Goffman suggested that people in all organisations—whether in health, business, teaching or policing—have a vested interest in supporting their colleagues, playing as part of a team and working together to minimise the reputational loss that their organisation can suffer. He analysed in particular detail how that can happen in health services right across the world, although it must be said that such things do not always happen for bad reasons. People have duties of loyalty to colleagues and a genuine concern for the organisation to which they belong—for its reputation and, where admitting to errors might seriously imperil it, for its very survival.

People inside organisations often recognise that mistakes will happen in their organisations. I have worked in the teaching profession all my life, and I have not always been very overt about my colleagues’ deficiencies, even when that sometimes has involved people suffering from alcoholic intoxication when they should not. There are therefore circumstances in which people cover up. There is also probably a belief in many organisations that the internal resolution of problems is the best way to proceed.

However, there is a huge downside; confidence is eroded by simply taking such a path. Worse still, false confidence persists; in other words, there are palpable and demonstrable errors in organisations, but nobody finds out about them until it is too late. Errors remain uncorrected, and poor performance is undeterred or, in some cases, it worsens.

That is where the duty of candour fits in, because it will, on a voluntary or simply a request basis, lessen the problems. There is an enormous amount of evidence not only that patients want the NHS to be candid with them, but that the NHS finds it hard to be candid. The Department of Health itself spoke of a culture of denial in the NHS—denial about error and, more seriously, about negligence.

No one believes that things will necessarily improve if nothing is done. No willing provider entering the frame will find it easier to be more candid than NHS organisations; in fact, they might have other motives for covering up. They might be answerable to others apart from members of the public, such as shareholders and the like. There is therefore a genuine concern to get things right.

Every Member of the House of Commons has probably come across a case, or several cases, where they feel that things have gone badly wrong. In my intervention on my hon. Friend the Member for Carshalton and Wallington, I mentioned primary care. A young man in my constituency—he was a relative of a friend of my daughter’s—went to his GP five times to complain of listlessness, a lack of energy and so on. He was brushed off with suggestions that he needed more rest and less stress. He was told that he perhaps had glandular fever, but no blood test was done. Eventually, when one was done, it was discovered that he had late-stage leukaemia. My children attended his funeral. That clearly was a failing.

I am also familiar with the ongoing case in my constituency of a TV soap star with a disabling condition that was brought on by receiving the wrong diagnosis and the wrong treatment. Similarly, I had the long-running case of a lorry driver with severe hypertension who was prescribed Viagra for other complaints, even though Viagra increases blood pressure. The thought of a lorry driver being prescribed a drug that can imperil not only him but members of the public is quite disturbing.

A woman in my constituency was falsely diagnosed with cancer and treated for it until, on the spur of the moment, she decided to request a check of the X-rays. Staff then found that the X-rays that they had been using, and which they had assumed were correct, were those of another person. That woman had spent a year in absolutely harrowing circumstances. More disturbingly, we do not know whose X-rays were assigned to her. Presumably, that person was not given the treatment that this woman was wrongly given.

Each of those cases leads to a prolonged complaints procedure, involving the ombudsman and the Care Quality Commission. In other cases, as other Members have indicated, there have been accusations that records have been altered. The whole process is inordinately cumbersome and difficult. To some extent, it exists because there is no candour where candour would probably be the solution.

On top of that, there are the systemic failures—the Mid Staffordshires, the Bristol heart babies and so on. To be fair, the Government recognise that this all comes with the territory of running the modern health service, and they are, to some extent, endeavouring to deal with the problems. Lots of things are going on, and we all want to applaud and support what the Government are doing on quite a few issues. We also applaud the previous Government for having initiated some of these things.

Incident reporting has got better, which is wholly desirable. Complaints are monitored, which is good and a move wholly in the right direction. There is more intensive recommending of procedures. The NHS is more of a learning body than it ever used to be; good practice is disseminated, while bad practice is identified and controlled. There is a general beefing-up across the piece of NHS guidance—particularly to the secondary care sector—about things not to do, things that will help and things that will avoid mishap.

Right across the profession, there is a constant stressing of professional ethics, as spelt out by the General Medical Council or whoever. In the past few days, we have had the phenomenon of publicising outcomes, with efforts by Dr Foster and, presumably, the Department of Health to see that outcomes are properly tracked.

[Mr Syms]

It is interesting that it is sometimes non-NHS organisations such as Dr Foster, rather than the NHS itself, that put their finger on the things that go wrong. The NHS is a wonderful organisation generally, but most of my constituents would be surprised that there is not a duty of candour already. One reason why we have not got one is that we find out that we do not only when we actually have a problem.

[Dr Pugh]

Dr Foster is probably doing what the Government will eventually get around to doing, and it will presumably prompt the Government to do that more expeditiously.

In some cases, private organisations may find it slightly easier than the Department of Health to progress such matters, but a lot of internal consultations and procedures will need to take place. Such organisations do not need to be answerable for how they treat the bodies within the NHS. A recent key development is the Government’s willingness to ensure immunity for whistleblowers, and to encourage whistleblowing when appropriate. That is a good thing, but there is evidence that whistleblowers still take genuine risks. For instance, they may not be sacked or redeployed, but they may experience difficulties getting employment elsewhere in the health service. I know of cases in which genuine whistleblowers have regretted the professional outcome that has resulted.

Such Government measures are self-evidently to the good, but they are not the same, equivalent to or a substitute for a duty of candour. Frankly, not all errors will be reported and not all complaints will get bottomed out. As others have said, guidance is ignored, professional ethics can be flexibly interpreted, and outcomes, whether published by Dr Foster or others, often come too late or are too general for individual cases. As I pointed out, although whistleblowers may have temporary immunity, that may not last. The Department of Health spoke of a culture of denial; but if such a culture exists, it needs to deal with it.

The argument against a statutory duty of candour—that, in a sense, the simple duty to be open with patients or relatives when requested is otiose or redundant—is not sustainable. It cannot be used as a genuine reason for Government reticence or hesitation. I therefore ask why the Government are hesitating when they are going ahead with so much else. A duty of candour is a disincentive to cover up, and it takes away the risk for whistleblowers.

Statutory duties are important. I give a parallel example. Local authority reporting officers, usually directors of finance, have the job of identifying when a council is spending money in a reckless and improvident way. They have always been in that position, but prior to there being a statutory duty to show the council the red card they were often bullied by the political establishment. As a result, they unwillingly had to consent to the deployment of council resources in ways that were reckless. Without a statutory duty, the same sort of thing can happen in health institutions. People can be put under a lot of pressure, and unless they can say, “But I have the statutory duty to report this,” they will find themselves in appreciable difficulties.

If we all believe in transparency—and we do at the moment—the duty of candour must be part of it. It keeps patients informed of their genuine situation. It is entirely in line with what the Secretary of State says again and again—it is a good quote, which I paraphrase, about no action being done to me without my consent. That is the gist of what he says. Why, then, do we hesitate, given the coalition agreement? The Liberal Democrats are clearly on board, and many Conservative Members genuinely support it. Indeed, the coalition agreement is emphatic.

I have the perception that somewhere in the background in the Department of Health the voice of Sir Humphrey can be heard. Just as the Minister is about to initiate a statutory instrument on the subject, someone in the civil service—I do not accuse the permanent secretary—says, “That is a very brave decision, Minister.” The Minister is thus persuaded that his decision may not be as positive as appeared at first sight.

If one thinks about it, a candid admission of error or, worse still, of negligence is intrinsically damaging and potentially expensive. I have seen stats suggesting that the potential damage to the NHS, if every person who had a complaint pursued it legally to the nth degree, might be a bill of something like £10 billion. That is half of the internal savings that the NHS needs to make.

However, the stats also show that litigation costs against the NHS are far less than that. The unnerving feeling inside the Department of Health is that if it goes for a statutory duty—I believe that it should—that picture might change dramatically, as the number of complaints that end up in successful and expensive litigation mushrooms.