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Volume 402: debated on Thursday 3 April 2003

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General Practitioners

6 pm

I have the honour to present a petition from Doctor, which has organised a campaign called "Save our single-handers". Signatures have been gathered from all over the country, and the petition involves many local practitioners whose patients value their work and are very upset by what the Prime Minister said in the House a year ago.

The petition reads as follows.
To the Honourable the Commons of the United Kingdom of Great Britain and Northern Ireland in Parliament assembled.
The Humble Petition of Doctors supported by those signatories whose signatures are appended.
Their concern at the comments of the Prime Minister and First Lord of the Treasury during Prime Minister's Questions on 3rd July 2002 to the effect that "There has been a move over time away from single-handed practices so as to improve the quality of care that people receive", and also their concern that he has not been able to cite any evidence to support his supposition.
Wherefore your petitioners pray that your honourable House urge the Prime Minister and First Lord of the Treasury to apologise for his aforementioned comments of 3rd July 2002 which have caused discontent amongst patients and General Practitioners.
And your petitioners, as in duty bound, will ever pray, etc.
To lie upon the Table.

Hearing-Impaired People

6.2 pm

I have the honour to present a petition on behalf of all people with hearing impairment, particularly those living in south-east Essex. We must listen to what these worthy and caring people have to say, and promote equal access for disabled people and inclusive design to make television, radio and telephone equipment useful for those with impaired hearing without adaptation. I warmly congratulate the members of the Benfleet hard of hearing club on their community-spirited action in collecting signatures for the petition, which reads as follows.

To the Honourable Commons of the United Kingdom, Great Britain and Northern Ireland in Parliament assembled.
The Humble Petition of Mrs. Irene Haylock, Ashleigh Sharp, Jessica Arnold, members of the Benfleet Hard of Hearing Club, and others of like disposition sheweth
That there are some 8.7 million hearing impaired people in the UK and without changes in legislation, and particularly in the Communications Bill, technology and commercial developments will leave them under increasing disadvantages and will increase the extent of the digital divide whereby disabled people will be left further behind and more seriously discriminated against.
Wherefore your Petitioners pray that your Honourable House shall urge the Government to implement changes in the Communications Bill to end exclusion for hearing impaired people from digital TV, Radio and telephone services.
And your Petitioners, as in duty bound, will ever pray, etc.
To lie upon the Table.

Tom Cooke

Motion made, and Question proposed, That this House do now adjourn.— [Joan Ryan.]

6.3 pm

I welcome the Minister. We have not met before on the occasion of a health debate. As she knows, in Scotland health matters have been devolved to the Scottish Parliament. This, however, is a particularly unusual case which has given me a constituency interest in health services in England.

A couple of Members, having seen the Order Paper, naturally asked me "Who is Tom Cooke?" They wondered whether he was an important person of whom they should have heard. I told them that, having read the report of this debate in Hansard, they would probably appreciate the significance that Tom Cooke might have, and realise that he would prove in due course to be a very important person.

As you will know, Mr. Deputy Speaker, Members are often presented with tragic cases by constituents. Many of those cases seem to involve injustice on a disturbing scale. The sad death of Tom Cooke and the issues raised by his death combine both. Tom's mother and father, Lauren Devine and Gordon Cooke have sought my involvement to bring a focus on Tom's case and draw attention to their plight as they strive to deal with the ongoing consequences more than two and a half years after his death in June 2000.

Tom's birth and short nine-day life were beset with negligence on behalf of the United Bristol Healthcare Trust—UBHT—and covering up by that organisation when challenged. That this cover-up culture persisted, after the Bristol heart inquiry and the Kennedy report were supposed to have brought it to an end, is a scandal in itself. The Kennedy report highlighted a culture of failure and cover-up in Bristol. There was clearly organisational failure and a culture that was developed in the interests of the trust, and not of the patients in their Bristol hospitals.

The Secretary of State, in responding to a debate in the House, accepted Kennedy's recommendations and sought to reassure the public that the Government would address the failures. He said:
"In essence, our response to Kennedy falls into two parts. The first includes the organisational and cultural changes needed to put the patient at the centre of the NHS. The second involves the changes needed to assure quality and secure improvements in services."—[Official Report, 17 January 2002; Vol. 378, c. 449–50.]
The issues raised by the death of Tom Cooke expose those same failures, and many more. Although we were told that it could not happen again, it clearly has.

Lauren and Gordon had two children already before Tom. Both are healthy and happy and are now attending primary school in my constituency. Tom was born with catastrophic brain injury after antenatal care for Lauren went badly wrong. As a measure of that failure of care, Lauren's period of labour extended to some 62 hours, but UBHT midwifery staff failed to accelerate her care in proportion to the danger faced by both mother and baby.

That the antenatal care fell below the standards that should be accepted is clear. What is also clear is that UBHT sought to brush the tragedy under the carpet. Some months later, long after Tom had died, Lauren still had possession of her antenatal case notes. They had never been collected, never been checked and never been analysed to learn the lessons. Lauren had to return copies voluntarily so that Tom's file at the hospital might be completed. Put simply, the instinctive reaction of UBHT was to deny, evade and deflect possible criticism—exactly the same denials, evasions and deflection that had characterised the previous scandal in Bristol.

Tom was born on 20 June 2000, severely handicapped and with significant brain damage. Lauren was also severely weakened by the birth and a traumatic labour. At this stage, significant confusion and, perhaps, obfuscation developed between the two roles of treatment and research. In the immediate aftermath of the birth, was Tom being treated for his condition, or was he being researched as part of a trial? It has since emerged that consent was gained from Lauren for Tom's entry into a research programme. At the time, Lauren had a haemoglobin level of 6.4—half the normal value—and was clearly in no fit state to make any decisions of that nature. Her assent to treatment was obtained, when in fact it was a research programme into brain cooling equipment. Despite the treatment being presented as being necessary to help her son, it has since emerged that in fact Tom was to be used in the research as a control. He was to be given no treatment.

Equally reprehensibly, Gordon and Lauren were kept away from their son during this period. As a parent myself, I cannot begin to contemplate the isolation that was inflicted upon them, at such a desperate time. Further, Lauren's consent to the recording of a video of Tom's "treatment" was sought. She declined to give that agreement, but the video was produced in any case. This kind of appalling side-stepping and reversal of the express wishes of parents shows what failure remained at UBHT. Action is now required to ensure it cannot happen again.

Tom died nine days after his birth, at a point when relations between the parents, the doctors and the research team had reached a low point. Lauren and Gordon were given Tom to take home, as they were told he was going to die that day. No advice was given as to how to make his remaining hours comfortable, and no real guidance was given as to why Tom should have been taken home to die. No instructions were given on how to feed him liquids. The House should remember that this was a child—a person—who could not swallow.

It is now clear that when Tom died, some 10 hours after leaving the hospital, he was probably malnourished, and deprivation of liquids clearly played a significant part in his passing.

That this case is tragic is not in doubt. The Department of Health must address the following questions. What action has been taken to learn the lessons of the midwifery failure that contributed in large part to this tragedy? Why are the procedures for obtaining parental consent for research trials so routinely bypassed, and why is the division between research and treatment so obviously blurred? What can be done to bring an end to the attempts by UBHT to airbrush out inconvenient patient episodes?

As I mentioned earlier, it was five months before Lauren contacted the hospital to inquire what lessons had been learned—a perfectly reasonable request. The error of the hospital's failure to reclaim Lauren's case notes came to light during that conversation. They are always held by the patient during antenatal care, but should always be returned afterwards—UBHT knew that, but the airbrush had been used to fine effect.

The fact that Lauren is a qualified barrister obviously raised suspicions that she would not be easily placated. The ongoing heart inquiry, leading to the Kennedy report, meant that her silence was vital. After she was warned to keep quiet, the story takes a turn for the worse.

In order to silence Tom's parents, the totally unfounded allegation—subsequently proven to be inaccurate—was made that Lauren had threatened to harm her other children. It was absurd. It was highly damaging to the family, and the allegation was subsequently rejected.

These allegations—involving child protection issues—are covered by the Children Act 1989. Quite properly, the legislation seeks to allow the holding of information on those deemed to be a threat to children. But surely the allegations that are recorded must be accurate. I refer to an answer that I received to a written question in which I asked what guidance was given to Government Departments in dealing with information on individual files that have been accepted as inaccurate. The reply was:
"General guidance on compliance with the Data Protection Act 1998 is issued by the Information Commissioner. The Commissioner's booklet, "The Data Protection Act: Legal Guidance", contains a section on complying with the requirement in the 1998 Act's fourth data protection principle that personal data must be accurate and, where necessary, kept up to date."—[Official Report, 21 January 2003; Vol. 398, c. 283W.]
In fact, despite the fact that they have been rejected by Bristol's social services department, the allegations and the subsequent profiling of Lauren have been unstoppable. UBHT achieved what it wanted—the silencing of a dangerous irritation to their club culture, at a time when further exposure of its failings would have been fatal for the organisation.

The allegations remain on file. Indeed, should Lauren or Gordon seek to request details on their child protection allegations on file, their inquiries themselves would be treated as further incidents of concern.

These inaccurate allegations spread like wildfire throughout the social services and healthcare network. Lauren and Gordon found their other children affected at their schools, and they were affected at their work. All of that was based on deliberate inaccurate allegations, and all of it deliberately designed to maintain Lauren's silence. It is worth noting that those allegations were distributed on an unsolicited basis—they were even sent to my region, Dumfries and Galloway, the family's new home, when there was no reason for that to happen. It is not in doubt that there was systemic failure at UBHT. Kennedy made that clear. It also made it clear that this is an organisation that will do absolutely anything to cover up bad news.

As I said, Lauren is a barrister. She is a specialist in child protection issues, so she knows her and Gordon's rights as Tom's parents. Surely the Data Protection Act 1998 would force the release of their records from UBHT and allow proper scrutiny of the facts. In fact, the trust has even evaded its responsibility to hold and release information as it is required to by law. Some limited releases are only now being made. One of t he items that could—indeed, should—have been released is the video that was made of the research trial against the express wish of Tom's mother. That was prevented by Department of Health officials breaching confidence and relaying the subject of a private meeting with the DOH's investigation and inquiry unit to the hospital. The video was destroyed by the trust. That is unbelievable deception and an extraordinary failure of the system.

This raises serious questions. If the Department of Health's own inquiry team cannot be depended upon for action, who can? In the system for scrutiny after the Bristol heart scandal there were supposed to be new channels to ensure independent scrutiny of failures. In fact, for my constituents, there seems to be no such independent channel. An inquiry was offered to Tom's parents, but only by someone overseen by the chief executive of UBHT. That is no way to ensure patient confidence. Given the nature of their treatment over the past months, is it any wonder that Lauren and Gordon would have no confidence in such an option? Where, after the Kennedy report, is the new openness and accountability? Where is the confidence-building independent scrutiny? Many quangos have been created, but none is delivering material improvement in the system of governance and inquiry.

It is obvious that the system is failing in forcing compliance on errant trusts. How can the Secretary of State for Health, who has ultimate responsibility, ensure that trusts comply with his wise words and his directives? It was impossible to force UBHT to release that research video—instead, they destroyed it. The Secretary of State is the legal owner of trust records and files, yet has no power to ensure that they are held and used properly. The Department has long been aware of the scale of injustice that has been inflicted on Lauren and Gordon and their children. It now needs now to do something about it.

Closure is required for this family. The best form of closure would be the knowledge that a tragedy like theirs could not happen again. During the time since Tom's death, that has been at the forefront of my constituents' minds. Confrontation has been, and will remain, the last resort. The family have offered to engage constructively with the Department to work through the issues involved, and I hope that the Minister will seize that initiative today.

The Minister has to address three fundamental issues on which the case rests, as well as many other issues. How can the Department of Health be sure that it cannot happen again? Why is there is no independent mechanism for governing such disputes? How can false allegations stay on file? The Kennedy report had fine objectives. It made 198 recommendations which together and over time would help change the culture of the NHS, which according to the inquiry needs to be
"a culture of safety and of quality; a culture of openness and of accountability; a culture of public service, a culture in which collaborative teamwork is prized; and a culture of flexibility in which innovation can flourish in response to patients' needs."
We are still some way from that fine objective. A human tragedy has been transformed into huge failure on the part of the UBHT. It cannot be allowed to happen again.

6.19 pm

I am grateful to the hon. Member for Galloway and Upper Nithsdale (Mr. Duncan) for raising in the House this evening the important question of patient safety. I join him in expressing my sadness at hearing about the tragic death of Tom Cooke, aged only 9 days.

The issues concerning the family and raised by the hon. Gentleman have been raised with the Department already. They have also been raised with the trust, which conducted a review of a number of issues that were raised by the family and which provided a report to the family on 8 May 2001. My officials have met Tom's mother and her representative and have worked to find a way forward to meet their concerns. The outcome of that discussion was an offer to set up a review that was independent of the trust concerned. The review would be conducted by an independent lawyer and would consider all the family's concerns—including their treatment by the trust before, during and after Tom's birth.

Although the review would have been conducted under the second stage of the NHS complaints procedure, the reviewer would have been entirely independent of the trust, with his or her final report being made to the chief executive and the board of the trust, as well as to the Department. Unfortunately, the proposal was rejected by the family. We were also unable to pursue an offer that was made by the chief executive of the trust to meet the family and their representative at the Department's offices to discuss the issues.

I will try not to interrupt the Minister's flow. Does she accept that the independent inquiry that was offered was to be appointed by the chief executive of UBHT? There needs to be some avenue that is entirely independent of an errant trust; otherwise, how can patients trust the system?

I understand that the offer was of an independent lawyer to review all the circumstances. That offer would have been a way forward, had it been accepted by the family, who could then have reported to the board allowing decisions to be made on the issues. The review would have been conducted in an entirely independent way. I am sure that we could have built in requirements to ensure that the review was independent. The offer remains open to the family. It is an avenue that I would urge the parties to pursue, because it is important that the issues are explored as fully as they possibly can be.

While discussions were going on to try to find a way forward, the family, through their lawyers, issued a pre-action protocol. That has the effect of staying proceedings under the complaints procedure, because we cannot pursue complaints or concerns using internal procedures at the same time as we are dealing with those same or related complaints and concerns by way of legal action. Now that we have the pre-action protocol, we cannot pursue the NHS complaints procedure—which is the procedure to use for dealing with matters in the health service.

There should however be no suggestion that the possibility of a review has been closed to the family. We have been entirely clear that the question of an independent review may be revisited to deal with any outstanding issues when any legal action has been concluded. There has been an allegation that negligence proceedings, if pursued, would deal only with some issues of concern to the family, and that there could be outstanding issues remaining. An independent review could pick up on any outstanding issues that were outwith the legal proceedings. It is entirely right and fair that that should be the case and that all the concerns that have been raised by the family should be investigated properly. That leaves open the question of the appropriate means of addressing a whole range of those concerns, but if there is going to be legal action, that legal action has to take place before we can see what issues outwith the legal action then need to be considered.

Does the Minister accept that part of the reason for the pre-action protocol was to secure the information that the family needed from the files? That process is still not complete. The family still cannot be sure that they are in receipt of all the information that is being held—information that they are entitled to under the Data Protection Act 1998. They are entitled to information and that was part of the reason for instigating some of this action.

It is right that the family, through their lawyers, should be able to pursue the information that they would need to prepare their case if they wished to embark on legal action. I do not know the individual circumstances of this case, but I want to say to the hon. Gentleman that the way in which he has presented this case today suggests that he has concluded that these matters have been investigated and decided. They have not been decided. I should be loth to conduct the debate with the sense that matters had been proven. The hon. Gentleman has used phrases such as "the matter was proved beyond doubt", or "the case is beyond doubt". Some of those matters have not been explored. The trust vigorously defends many of the allegations. I certainly do not know the truth about that individual case. Such matters will be explored through litigation, or properly investigated under the NHS complaints procedure or through the option of the independent review that was offered by the Department. I cannot say whether the allegations are proven. That is the basis on which I make my comments on the case.

It is right that I should point out that the trust concerned has an international reputation in the field of neonatal medicine and the care of children. In a recent review of clinical governance, undertaken by the Commission for Health Improvement, it was described as
"being seen as a centre of clinical excellence",
with "good outcomes of care". Good-quality clinical governance has to be based on robust evidence-based medicine, as I am sure the hon. Gentleman agrees. That requires good research, and it is important that patients and their families understand the context in which such research takes place. I realise that that issue is of concern to the family.

Before I deal with the issues on patient safety that have been raised, I want to comment on several specific matters. First, there has been a suggestion that Tom Cooke was the subject of research without consent. That is an extremely important matter on which I cannot comment, as it is likely to come into any legal action. However, any treatment given to a child, including treatment given during a research trial, should be subject to the consent of a person with parental responsibility for that child. The Department of Health's guide on consent to examination or treatment makes it crystal clear that consent is a key requirement. I understand that, in this case, written consent was in fact given by both parents.

Secondly, the hon. Member suggested that social services involvement was inappropriate in this case.

Before the Minister moves away from the research, will she confirm that no consent was given to the taking of the research video?

I am not aware that specific consent was sought for particular elements of the research. My information is that written consent was given by both pa rents, but I do not know whether the different elements of the research were identified in the written consent; nor am I aware that it would be common practice to go through each such item when seeking consent. I am not in a position to provide the hon. Gentleman with that information. I am sure that an examination of the records would make clear the basis on which consent was sought and given. If there were an independent review of these matters, I am sure that point would be at the heart of the process.

I want to comment on the position of social services. Local authorities are responsible for decisions that they reach about individual children. Ministers cannot intervene in individual cases such as this, nor would it be appropriate for me to comment on cases involving social services that may become the subject of court proceedings, if that is indeed the route that the parents propose to take.

The Government and I appreciate that there can be serious consequences for an individual if allegations against him or her are unproven. Equally, that needs to be contrasted with the serious effects on children if allegations are not believed or not taken seriously. We all know of circumstances in which children's complaints have not been taken seriously, with terrible results. Although some allegations of abuse will inevitably be mistaken, misplaced, or even false and motivated by malice, we must never encourage a culture of non-interference, of turning a blind eye or passing by on the other side. We must not prevent people from speaking up and raising their concerns. Such matters need proper investigation, and to be—confirmed or not; and appropriate action should be taken. We must make sure that we listen both to children and to those who speak on their behalf.

The hon. Gentleman referred to the destruction of the video when the Department raised the matter with the trust. The Department was genuinely trying to find a way forward for the family, and wanted to establish whether it was possible to locate the video and a blanket that had belonged to Tom. The family specifically asked for the video of Tom not to be played again and to be passed to them with no copies left in existence. That message was relayed to the trust and, in fact, the video was deleted from the researcher's laptop.

The Department did not ask for that video to be destroyed; nor did we establish who owned it or whose decision it was to destroy it. Those issues have been discussed with Tom's mother, and they certainly could be included in any independent review. If Tom's mother or her adviser wants to make that matter the subject of a complaint, it can be pursued, but the Department certainly did not ask for that video to be destroyed: it was simply seeking a way to obtain it, so that it could be given back to Tom's mother, as she had requested.

The hon. Gentleman also referred to sharing information and said that, by making such a request, the Department could have been in breach of its duty of confidentiality to Tom's mother. Again, all the action taken by the Department in this case has been intended to try to find a way to resolve some of those very difficult issues for Tom's family in their relationship with the trust, but I do not think that a great deal of progress will be made until a review, investigation or litigation takes place to find out the truth of the allegations.

I want to reassure the House and the hon. Gentleman about how seriously the Department of Health views patient safety and about all the measures that have been put in place in the light of the Bristol report. After t he Bristol report, we said that it was important to change the culture in the NHS, that there needed to be more openness and transparency, and that patients needed to be involved in the service, driving up standards.

The measures that have been put in place since the Kennedy report into the events at Bristol are very wide-ranging indeed. We have introduced new systems for patient and public involvement, patient advice liaison services, a new regulation for health care professionals to regulate the clinicians involved, the new independent inspectorate for the NHS, the National Patient Safety Agency, a new independent look at children's health services, and better leadership and modernisation in the service. There has been a real drive to ensure that we change that culture, because clinical governance, patient safety, openness and transparency are of the utmost priority in the health service.

Finally, I shall answer the hon. Gentleman's specific questions. He says that there is no independent mechanism to govern such disputes. Yes, there is: the NHS complaints procedure, which is the appropriate way to pursue such matters. I urge the hon. Gentleman and the family concerned to take that case forward. He asks how we can be sure that such things will not recur. We have not inquired into the facts, as I have explained, but all the measures taken following the Bristol report should ensure that we create a culture in which such matters can certainly be addressed, so that the NHS ensures—

The motion having been made after Six o'clock, and the debate having continued for half an hour, MR. SPEAKER adjourned the House without Question put, pursuant to the Standing Order.

Adjourned at twenty-seven minutes to Seven o'clock.