Health and Social Care Bill

Debate between Lord Walton of Detchant and Lord Harris of Haringey

Wednesday 29th February 2012 Lords Chamber

[Lord Harris of Haringey]

That does not alter the point I was about to make, which is that, on the basis of those remarks, it is important to recognise in the Bill that that is the expectation on local healthwatch organisations. That reflects the growing concern of people outside that, despite the Government’s best intentions for how healthwatch will be organised, those organisations will not be anything like as effective as your Lordships would hope. We hear, for example, that there is widespread concern that the Government will remove the statutory nature of local healthwatch organisations—we will no doubt come to that in due course. We are told that the Government are indifferent to the consequence of not ring-fencing their finances. The concerns expressed by the noble Baroness, Lady Northover, in Committee, that those organisations may be too small and unable to cope with some of these loads are real. Therefore, it is all the more important not only that we provide a framework which enables healthwatch organisations to be effective but that we make clear in the rest of the legislation the importance of giving a clear statutory role to healthwatch organisations—in particular, in the vital role of commissioning local services.

[Lord Walton of Detchant]

My Lords, this is a disparate group of amendments. I shall speak in particular to Amendment 96, which has been so ably proposed by my noble friend Lady Finlay. I do not propose to redeploy the arguments that I expressed when a similar amendment was discussed recently. One thing that is beginning to emerge as the Bill continues its progress through your Lordships’ House is that the size and, perhaps, quality of the clinical commissioning groups will be extraordinarily variable. Some will be large and contain a large number of GPs, and so on; therefore, with the secondary care individuals who will become members of the group, and others, some will deploy a wide range of expertise.

However, it is perfectly clear that in some parts of the country the clinical commissioning groups are going to be very much smaller. The range of issues in highly specialised services will be very limited and the smaller clinical commissioning groups will lack the knowledge and expertise to handle those areas well. For that reason, it is crucial that the national Commissioning Board should have the major responsibility for commissioning highly specialised services, in which I include not only the neurological services, about which I spoke in some detail last week, but cardiological services, cardiothoracic services and many other specialties.

On Rare Disease Day, the point that my noble friend Lady Finlay made about rare diseases is very important. There are thousands of rare diseases affecting a very small number of patients throughout the UK. The Rare Disease UK consortium, chaired by Dr Alastair Kent, the former chairman of the Genetic Interest Group, is deeply concerned, as is the Neurological Alliance, about the mechanism by which these diseases will be given attention in this legislation and proper understanding, control and attention by the national Commissioning Board. As my noble friend said, there are several thousand rare diseases, some affecting very small numbers and some larger numbers.

I spoke in detail last week about muscular dystrophy. As an example, last week I was asked by a former medical colleague in Newcastle to see, with him, a patient—not as a consultation but to look at the problem posed by a condition called haemolytic uraemic syndrome. This is due to a genetically determined disorder of the complement system. It is a disease that affects the kidneys, is steadily progressive and is ultimately fatal. However, recent research has identified and produced a licensed medicine which is effective and which in the patient whom I met, with her husband, has proved to be virtually life-saving. The problem is that there are only 200 patients in the UK with this disease and the cost of the medicine for that patient is £250,000 a year. At the moment, it is paid for by the drug company, which is carrying out trials.

That is one example but there is a huge number of genetically determined rare diseases for which new drugs are coming on stream. There are many cases where the causal, abnormal or missing gene product has been identified and where, slowly but surely, drugs which are beginning to have a beneficial effect on these progressive, disabling or ultimately fatal diseases are beginning to emerge. These are called orphan or ultra-orphan drugs. Whatever happens in the future with the National Health Service, the possibility—the probability—of having a special mechanism to deal with the needs of people with these rare diseases, as well as the needs relating to the orphan and ultra-orphan drugs, is going to be a massive problem. It is crucial that there is a very clear indication in the Bill that rare diseases deserve special consideration. For that reason, I warmly support Amendment 96, which has been proposed so ably by my noble friend Lady Finlay.

Health and Social Care Bill

Debate between Lord Walton of Detchant and Lord Harris of Haringey

Monday 27th February 2012 Lords Chamber

[Lord Walton of Detchant]

My Lords, I added my name to this amendment for one reason and one reason only: in the hope of seeking assurances from the Minister. When I first joined the General Medical Council in 1971, the president was the late Lord Cohen of Birkenhead, who was a wonderful man. He was a fine physician, but he was an autocrat and his views were very traditional and in some respects, I have to say, somewhat backward. He told me, “Never apologise to a patient. The lawyers will get after you”. He told me, as a young man, “Never speak to the press or to the television. They will misquote you always”. Happily, since that time the General Medical Council has progressively changed its view. Now the recommendation made to all medical practitioners is that, if you have made a mistake, if you have committed an error, it is your duty to apologise to that patient sincerely. An apology does not mean an admission of liability; it is simply a sincere apology for a mistake. I hope that is the case in respect of all other healthcare professionals whose activity is regulated by law. I would like an assurance from the Minister that that is the case.

The purpose of this amendment, which has been so well proposed by my noble friend, is to confer on health bodies, whether clinical commissioning groups, independent foundation trusts or other organisations providing medical care, a similar obligation and, indeed, the duty to apologise for errors that have occurred under the auspices of those organisations. I simply ask the Minister whether, in the contracts that these bodies hold with the NHS, such an obligation is a part of the contract. If it is, it may not be necessary to have such an amendment on the face of the Bill. I hope the Minister can give me those assurances.

[Lord Harris of Haringey]

My Lords, I support this amendment because I believe that it is a sincere attempt by the noble Baroness, Lady Masham, to help the Government out. I do not intend to repeat the arguments that we had a few days ago on Report about placing on institutions a rather stronger statutory obligation to inform patients where mistakes had taken place, partly because we have had that debate. During that debate, the Minister repeatedly expressed the view that the objectives of the amendment could be achieved by placing a contractual obligation on organisation to do this. This amendment quite simply requires that that contractual obligation takes place. I am assuming, therefore, that the Minister will accept the amendment, because it does exactly what he said he wanted to do in his previous speech.

The amendment also expresses the concerns raised by a number of your Lordships in Committee and one or two on Report that perhaps placing the duty and obligation directly on organisations and the individuals involved would be inappropriate and that that would provide too rigid a framework. However, as the amendment does what the Government said would solve the problem, I hope that the Minister will indicate that he is happy to accept it in this form.

The reason why I think that it is helpful to the Government is, as may not have escaped the Minister’s attention, a certain amount of criticism of the Department of Health and of this Bill is prevalent at the moment. For example, a letter was published in the Telegraph this morning which said:

“The Coalition Government promised to ensure greater NHS accountability to patients and the public. We believe this aspiration has now been abandoned”.

That was signed by a large number of people active in representing the interests of patients around the country. It is not specifically about this issue; it is about an issue that we will come on to very shortly in terms of HealthWatch. But there is a very widespread concern that, despite all the rhetoric that we have heard from the Government about “no decision about me without me”, that aspiration has been lost in this Bill.

Part of the way of getting patients to have confidence in their health service is through the knowledge that if something goes wrong the fact will be shared with them. The Government said that they did not want a statutory obligation to be placed on individuals or institutions to do that, but they said that they would like contractual arrangements to be put in place. This amendment makes sure that those contractual arrangements are put in place, and I would have thought that the Government would want to accept it so as to demonstrate that even now there is some good faith left around their desire to put patients at the centre of the NHS changes.

Health and Social Care Bill

Debate between Lord Walton of Detchant and Lord Harris of Haringey

Monday 13th February 2012 Lords Chamber

[Lord Harris of Haringey]

My Lords, my name is down in support of the amendment. I want to make it clear at the outset that it is substantially different from the amendment put forward in Committee and has taken on board a lot of comments and points made during the helpful debate at that time.

As far as I am concerned, the origins of this go back to my meeting 18 years ago with William Powell about the death of his son, Robbie, when I was director of the Association of Community Health Councils. Mr Powell was concerned about the failure of the system to give him and his family answers as to why his son had died. Mr Powell is still campaigning for a change in law to place a requirement for some sort of duty of candour. Interestingly, that case eventually reached the European Court of Human Rights in May 2002. In its judgment, the court made it clear that at present there is,

“no duty to give the parents of a child who died as a result of their negligence a truthful account of the circumstances of the death, nor even to refrain from deliberately falsifying records”.

Most of your Lordships would find that a pretty shocking and appalling statement in this day and age, but that is where we are as far as the law is concerned and it remains a continuing consideration.

In September, as chair of the Independent Advisory Panel on Deaths in Custody, I had a listening day with a group of families whose relatives had died while detained under the Mental Health Act. Those families reported a lack of information from NHS trusts. One family reported that they,

“were unaware of any investigation, everything was released in drips”.

Another family claimed:

“They didn’t disclose anything, it was a battle to the end”.

Another said that

“the shutters came down as soon as I started asking questions”.

One parent explained that it was like being,

“in a void whilst waiting”.

These are parents or families of people who have died while in mental health care.

Even more alarming for families was the misinformation frequently provided to them. They thought that there had been a whole series of flaws in the way that the cases of the deaths of their loved ones were investigated. One said:

“The first time I had opportunity to speak to anybody was the consultant. Nobody told me about the investigation. I told the consultant that I wanted a meeting with nurses and see what happened … Consultant and matron came for the meeting with no pen and paper. I was the only one taking notes. After that the matron told me that she would try to get answers for me. I asked how she would remember 20 questions which I asked as she was not taking notes. It took three years for them to give this evidence”.

The problem is that most families feel that the investigations are not independent, and many of them feel that they are presented with lies. The problem is that the existing system does not work. It is not adequate as it presently stands.

The amendment has been significantly changed. It now relates explicitly to organisations rather than individual practitioners. The background is that there is currently no statutory requirement for organisations that provide NHS services to tell a patient, carer, or representative when something has gone wrong during their care and treatment that causes harm. The issue is left to guidance and a non-binding requirement in the NHS Constitution to have regard to the principle of openness. This has allowed cases to occur where NHS organisations have withheld such information from patients, delayed its release or, worse still, actively covered it up.

I understand that the Government have agreed that a duty of candour is required, but their preferred route is a contractual duty built into the standard contracts between commissioners and some providers of NHS services. Patient organisations and others do not believe that that is sufficient. It would not include all NHS providers—for example, GPs, dentists, pharmacists, and so on do not have such contracts—and it would not create access to the sanctions which the Care Quality Commission has at its disposal. Under the Government's proposal, as the noble Baroness, Lady Masham, said, the duty would apply only to incidents which are already being reported through official systems, so it would be useless in preventing cover-ups.

The amendment would require the Secretary of State to create a statutory, enforceable duty of candour by amending the registration regulations of the CQC. All healthcare providers would then have to comply with them to be registered. Of the issues raised in Committee, the most important, raised by several noble Lords, including the noble Lord, Lord Winston, who I do not think is in his place at the moment, and the noble Lord, Lord Walton, was that that might overlap or conflict with the clinicians’ professional duties and the existing arrangements under the General Medical Council and other codes of conduct organised by regulatory bodies. The proposal in the amendment is for a statutory duty of candour placed on organisations, not on individual health professionals. It therefore complements, rather than duplicates or confuses, the duties in health professionals' codes of conduct.

Indeed, Harry Cayton, the chief executive of the Council for Health Regulatory Excellence, has said:

“We support the introduction of a duty of candour in the CQC’s registration requirements, which would mean that the ethical responsibility of health professionals would be shared by organisations delivering healthcare services”.

Frankly, at the moment, doctors and nurses can be put in an impossible position where they would want to honour their ethical and professional obligations but are told by managers and lawyers within the organisation for which they work not to be fully open with patients. That would put them in the position of a whistleblower. This duty would remove that conflict for those individual professionals.

Of course, the amendment is not designed to get in the way of culture change. Several noble Lords said that we want culture change. No one disagrees. The point is that this will support the process of culture change. There is no argument for not setting out in regulations what is by any reasonable assessment as important and essential a standard of quality and safety as the others already set out in CQC regulations.

[Lord Walton of Detchant]

In relation to candour, the noble Lord may know that the General Medical Council published guidance just two weeks ago making it incumbent on doctors not to sign a contract or agreement that prevents them giving information which might be detrimental to the organisation that employs them. In other words, gagging orders are no longer accepted by the GMC as being part of a contract into which doctors can enter.

[Lord Harris of Haringey]

I am grateful to the noble Lord, Lord Walton, for that. It is an extremely important step forward and it recognises that there is an existing problem that requires the GMC to take that stance. I think that there is a distinction between gagging clauses and the sort of persuasion and pressure that may be applied to clinicians behind the scenes under such circumstances. This amendment focuses on the organisation’s responsibility and on how the managers and lawyers within an organisation should meet those obligations of candour.

I know that there has been some concern—I think that the Minister has expressed it at various points—about whether the CQC would be able to cope with regulating this duty of candour. It is worth making it clear that there is no question of asking the CQC routinely to monitor every incident with patients; it is simply about the expectation that it will be there as the backstop.

There is already a duty in the CQC’s statutory registration regulations to report to the CQC incidents that cause harm, but it is a duty which requires the organisation to report the incident to the CQC and not to the patient. It is rather anomalous that there is an obligation requiring an organisation to report something to the CQC but not to the patient at the same time. Quite clearly the CQC should have this information and be able to respond to and deal with it.

The point is that the CQC has always said that it could regulate this requirement if the Department of Health so wished. I think that there has been some recent correspondence with the Department of Health which has recognised that the CQC is currently under considerable resource constraints. However, I have seen copies of e-mails released under the Freedom of Information Act—

Health: Cancer

Debate between Lord Walton of Detchant and Lord Harris of Haringey

Wednesday 2nd March 2011 Lords Chamber

[Lord Harris of Haringey]

My Lords—

[Lord Walton of Detchant]

Would the noble Earl accept that this country has had a very proud record in carrying out clinical trials, not least in the field of cancer; and that since the passage of the European directive on clinical trials, the problem of getting ethical approval for multi-centred trials—in a variety of different centres—has become immense? Is he aware of the recent report of the Academy of Medical Sciences, from a committee chaired by Sir Michael Rawlins, which has made a number of crucial recommendations? If accepted by the Government, those would make the performance of these trials very much easier.