|The case of Sarah Lynch and the Royal Brompton hospital
This speech was an end-of-day adjournment debate given in the chamber of the House of Commons on 10 January 2006.
Mr. Richard Bacon (South Norfolk) (Con): I am glad to have the opportunity to raise the case of Sarah Lynch. The case was originally taken up several years ago by my hon. Friend the Member for Aylesbury (Mr. Lidington) when Sarah's parents, Mike and Sally Lynch, lived in his constituency, but it became my responsibility when they moved into my South Norfolk constituency. Quite simply, the case concerns their 20-year struggle to get an adequate explanation for the severe cerebral injuries that were sustained by their new-born child while she was in the care of the Royal Brompton hospital.
I was grateful for the opportunity to meet briefly the Minister of State, Department of Health, the right hon. Member for Liverpool, Wavertree (Jane Kennedy), and her officials yesterday to explain at least the background to the complex case. I appreciated that and I know that Mr. and Mrs. Lynch did as well. I am delighted that my hon. Friend the Member for Aylesbury has been able to join us for the debate.
On 12 August 1983, Sarah Kathleen Lynch was born at Wycombe general hospital. She was the elder child of twins. Although no problems had been detected with Sarah, her mother, Sally, was not happy with her breathing or feeding. Her mother eventually convinced herself that she was overreacting and there was nothing to worry about, and Sarah was discharged two weeks after her birth. However, concerns grew when Sarah increasingly became unable to keep down food and lost weight.
In September 1983, Sarah was diagnosed with a serious heart defect. After further tests at the John Radcliffe hospital in Oxford, she was admitted to the Royal Brompton hospital under the care of Dr. Elliott Shinebourne, a consultant paediatric cardiologist. On 4 October 1983, Sarah was operated on by Mr. Christopher Lincoln, a consultant cardiac surgeon. She underwent a cardiopulmonary bypass, which requires the cooling of a patient's body. The procedure is complex and dangerous, and Sarah had to be cooled to a temperature that slowed her heart enough to allow surgery to proceed. It is worth saying at this point that the cooling becomes important later in the story, as we shall see.
After the operation, Sarah's condition was noted as "fair". However, between 7.5 and 7.30 pm that day, the south block of the hospital experienced a total electrical power failure that lasted for approximately 15 minutes. Unfortunately, the hospital's stand-by generator failed to provide back-up power as its starter motor had malfunctioned. As a result, Sarah was allegedly hand ventilated for the duration of the power cut, although the hospital has been unable to identify who carried out the hand ventilation. It is worth stressing that Mr. and Mrs. Lynch were not told about the power failure and discovered that it had occurred only some three years later.
An undated discharge summary noted that Sarah was transferred to Wycombe general hospital for convalescence on 15 October 1983 and was deemed to be "in good condition." In late November 1983, concern was expressed about Sarah's neurological status. It is worth saying that there is no evidence that a neurologist was involved in the case at any stage - on behalf of the hospital at any rate - even though there was, as it turned out, severe brain damage. A computerised tomography scan was performed and it confirmed that Sarah had suffered not only severe brain damage, but, as a result of that, spastic quadriplegia, focal epilepsy, severe motor impairment, developmental delay and near total blindness. As Dr. Richard Newton, a consultant in child and adolescent neurology and one of the medical experts who examined the case later on behalf of Mr. and Mrs. Lynch, put it, as a result of her time in hospital,
"Sarah is . . . totally dependent on others for all her needs. Her abilities are not more than those of a new born baby and will remain so throughout her life".
Sarah started having fits and spent much of the next two years in and out of hospital. In 1986, the Lynch family received a questionnaire from Mr. Lincoln, the surgeon who had undertaken the operation, asking [Interruption.] I hope that the Minister will listen to this point because it is quite important. The questionnaire asked whether Sarah could perform sports, whether she tired easily and what activities she was unable to perform. The parents found the questionnaire extraordinary. Given that Sarah required 24-hour attention and could not walk, talk or feed herself, and given that the hospital should have been aware of those facts, it was an acutely insensitive thing to do and casts considerable doubt on the hospital's procedures.
The questionnaire and the fact that the hospital had sent it when it should have known of Sarah's condition also led the family, which, frankly, for the previous two years had been struggling on a daily basis to cope with the consequences of her injuries and had been in and out of hospital all the time, to conclude that the time had come to ask for further and broader answers on what had happened. They requested a meeting with Mr. Lincoln and Dr. Shinebourne. It took place in January 1987, but it failed to convince Mr. and Mrs. Lynch that the hospital had not been negligent in Sarah's treatment. In April that year, Sally Lynch began legal proceedings against the Royal Brompton on Sarah's behalf, citing severe irreparable damage and loss. Sadly, Sarah Lynch died aged 11 on 10 February 1995.
The Royal Brompton's failings cover nearly every aspect of Sarah's time in the hospital and long after her discharge. The Lynches felt that they were not informed of the true nature of the risks inherent in the procedure, only the risks of not operating on Sarah, and thus agreed to go ahead with it. In a letter dated 2 February 1987 to Dr. Fleet, paediatric consultant at Wycombe hospital, where Sarah was convalescing, Mr. Lincoln states that after their meeting, the Lynches had given him
"the impression that they had not been properly prepared for the possibility of any such complications".
To allow parents to sign a form consenting to surgery on their child when they have not been fully informed of its potential consequences is seriously negligent. .
When legal action commenced in 1987, the hospital failed to disclose relevant records, only revealing their loss or destruction in an affidavit sworn by the hospital's general manager in August 1989. The affidavit confirmed that no search for nursing observations for the post-operative period was undertaken until 1988 and that the generator's maintenance logbook was destroyed in 1987. To date, Sarah's X-ray plates and reports have never been found. One would have thought—I made this point to the Minister yesterday—that for such cutting-edge and risky procedures, it would be all the more important to have meticulous record keeping so that in the event of an incident, or simply in order to evaluate the effectiveness of procedures, the hospital would be able to refer back accurately to what had happened in any individual case.
I mentioned that the family consulted a number of independent medical experts, which they did to find out further information. They reviewed the case notes and provided professional opinions. Professor John S. Robinson, emeritus professor of anaesthesia at the university of Birmingham and a consultant anaesthetist for 27 years, stated in his preliminary report into the case that
"The anaesthetic recording . . . is, in my opinion, very poor. There are only five recordings of systolic blood pressure measured over the period of some two and a quarter hours that the anaesthetic is in progress. This is quite inadequate for such a major procedure".
Professor Robinson also refers to Mr. Lincoln's letter of 2 February 1987, in which Mr. Lincoln states that he had
"rigorously studied all the operation notes and anaesthetic charts and failed to pinpoint a cause for Sarah's brain damage."
Professor Robinson was dubious, stating:
"I believe this to be unlikely because I believe that it is obvious from a rigorous examination of the anaesthetic record, the perfusionist's records and the nursing notes that Mr. Lincoln cannot have been led to that conclusion".
Mr. Keith Roberts, honorary consultant cardiothoracic surgeon for the West Midlands regional health authority, in examining Sarah's case, made exactly the same point when he wrote in May 1990 that if these charts
"are those made available to me I cannot see how a 'rigorous examination' could have been made in view of the inadequacy of such charts".
Mr. Roberts was scathing about the record keeping, writing:
"The anaesthetic record is abysmally inadequate. Under 'Surgeon' the initials 'EDS' appear. Does this mean that a Senior Registrar actually did the operation with Mr Lincoln's assistance? There are only four readings of blood pressure prior to bypass, the lowest being 22 mm. mercury, and only one when bypass was resumed, of 42 mm. mercury. There is no record of temperature nor the time taken over the period of surface cooling, nor what technique of surface cooling was employed, nor the time at which the chest was opened. This is a deplorable record—or rather, lack of recording."
The Royal College of Anaesthetists' good practice guide states:
"In providing care you must keep clear, accurate, legible and contemporaneous patient records which report the relevant clinical findings, the decisions made, the information given to patients and any drugs or other treatment prescribed. You must keep colleagues well informed when sharing the care of patients".
The King's Fund organisation audit hospital accreditation programme has set a standard for health records in its organisational standards criteria which states:
"There is an accurate health record which enables the patient to receive effective continuing care, enables the healthcare team to communicate effectively, allows another doctor or professional members of staff to assume the care of the patient at any time, enables the patient to be identified without risk or error, facilitates the collection of data for research, education and audit" -
the point that I made yesterday -
"and can be used in legal proceedings . . . If this standard of record keeping is not maintained, and professional requirements are not being met, patients are being put at risk . . . and patients' rights, as set out in the Patients' Charter, are compromised. It cannot be emphasised too strongly that in medico-legal cases the outcome is often dependent on the anaesthetic record. An untidy, illegible, scantily completed chart may be taken as indirect evidence of shoddy or inattentive care."
Mr. Roberts had further criticisms in relation to the cooling, which I mentioned at the beginning of my remarks. In noting that the temperature for surface cooling is not recorded, and that the temperature for bypass cooling is not recorded, Mr. Roberts stated - this is an extraordinarily important point:
"I find this an extraordinary state of affairs, one with which I personally would not carry out open heart surgery . . . It is highly probable in this case that cooling occurred at too rapid a rate . . . and cooling on bypass from a temperature of 21° C to 14° C in 2 minutes seems unduly rapid (almost impossible)!"
Of the power failure, Mr. Roberts wrote:
"This to me indicates a terrible lack of back-up facility at the Brompton hospital. In my own unit the cardiac operating theatre and Intensive Care Unit have two separate sub-station supplies of electricity, plus an emergency generator which cuts in after a ten second delay and receives weekly maintenance checks. To carry out cardiac surgery, particularly on infants who are particularly vulnerable, without a guaranteed power supply, seems to me to be irresponsible."
Dr. Richard Newton, a neurologist who was consulted in May 1992 and who addressed the specifics of the neurological damage, concluded:
"The management of the encephalopathic illness seems to have been poorly thought out, and the medical team I believe were negligent in not seeking advice on this aspect . . . I feel doctors did fail in their duty, both in not explaining the risk of brain injury prior to the surgery and also the significance of the post-operative events".
There is no evidence that a neurologist was involved at any stage.
I now come to the report of Dr. Dominic Bell. I mentioned to the Minister yesterday that this report was very significant. It was a review of the whole case by an independent fact-finder, commissioned and paid for by the Brompton hospital. There were consultations, and all parties agreed to put the matter before Dr. Bell, a consultant in intensive care and anaesthesia at Leeds general infirmary, honorary senior lecturer at the university of Leeds and a General Medical Council performance assessor. It is worth pointing out that Dr. Bell's review was only the latest of quite a few that had already been undertaken, at the behest of the parents, by various independent medical experts. It was not as though it came out of the blue; it was the culmination of a series of independent reviews by medical experts.
Dr. Bell's remit was to determine whether the family's grievance has any foundation in sub-optimal or negligent practice; whether the grievance indicates a shortfall in other professional responsibilities such as communication, responsiveness and respect; whether the grievance has been addressed in an acceptable manner; and whether the grievance can be resolved.
Almost immediately, Dr. Bell's investigation stalled, and he protested to the Brompton:
"Deriving the key component of causation is difficult when relevant documentation from the clinical records is missing, staff are untraceable, and the involved medical practitioners consider post-operative events in ICU to have played no part but can identify no intra-operative problems as causal either."
In essence, the position being taken by the Brompton was that the power failure could not even potentially have been a contributory cause of the brain injury, but it was not able to explain what was the contributory cause.
On completion of his preliminary report in October 2001, Dr. Bell came under considerable pressure from the Brompton to moderate the tone of his report, to alter its formatting and to change his interpretation. He was sufficiently concerned by the attitude of the Brompton to place correspondence in the hands of his defence organisation, the Medical Defence Union, which advised him:
"You could be left fairly vulnerable if you produce a final version of the report and do not take into account all the information that was provided to you. I also feel you should be careful that your final report is not influenced by the Trust, otherwise your status as an 'independent' expert may be questioned by the family."
Dr. Bell replied to the trust expressing his disappointment that the trust's attitude was not lending itself to resolving the family's grievance and refusing to alter his position. His final report was issued in March 2003 and was severely critical of the Brompton at almost every level. He found that there was no evidence of any attempt to discuss the nature and origins of Sarah's neurological problems, the outlook, her care needs or planned management. He found that there was a complete failure to provide appropriate information to the parents, stating:
"One is not left with a favourable impression on standards of communication, empathy and sense of responsibility."
He found that the Brompton had failed to launch an inquiry into the power failure and notes that despite previous failures of activation of the emergency generator there were no protocols in place to direct nursing and medical action in the event of a failure of the power supply.
Dr. Bell puts forward the possibility - I know that this is a most serious charge - that documentation relating to the generator was "lost" along with Sarah's clinical notes in order to obfuscate any inquiry. He notes the statement of 16 March 1991 by staff member P.J. Humphries that a remarkable amount of documentation cannot be traced or found—namely, dockets for the critical period; the logbook relating to service and maintenance of the generator; the age profile report of Mr. Lee, who was a works officer; the report of Mr. Lee to the finance committee; and documentation relating to the previous episodes of standby generator failure.
Dr. Bell concludes:
"It defies rational thought to consider that all the above could be missing through simple carelessness. It must be entertained, therefore, that if a systematic effort was made to 'lose' relevant documentation and thereby obfuscate any inquiry, that this would constitute evidence that personnel involved believed this episode to be either causal or contributory."
In short, taken with the lack of testimony from key carers, Dr. Bell believes that this was evidence that the Brompton knew that it had a case to answer.
Dr. Bell concludes that the care had indeed been suboptimal, that there had been an absolute shortfall in professional responsibilities and that the grievance of the family was justified, stating that
"the grievance has not been addressed in an acceptable manner, either by individual clinicians or by the hospital as a whole."
No amount of fine words can bring back Sarah—words from me, the Minister or from anyone else. I have been struck by the determination of the Lynch family to discover exactly what happened to their daughter Sarah and to expose the failures of the Royal Brompton hospital. The hospital failed fully to inform desperately worried parents of the true nature of the serious operation that their child was to undertake. It failed also to enforce rigorous standards of record keeping by allowing clinical staff to make only the most perfunctory of entries in medical records without regard to their accuracy. Crucially, it failed to ensure that there was a standby generator that was fit for purpose to support the hospital in the event of a power failure. Indeed, a note of 18 October 1983 from the hospital's general manager confirms that the standby generator had not only failed on 4 October 1983 but had failed on at least one other occasion.
The hospital had allowed vital records pertaining to an extremely serious case to be destroyed or mislaid. It provided only the minimum assistance necessary to the Lynches' efforts to uncover the truth, showing that the hospital's management did not understand the distress that their actions have caused. It agreed to consult an independent fact finder in the person of Dr. Dominic Bell, only to pressurise him into altering his conclusions and ignoring unfavourable findings.
The majority of the hospital's failings were just as indefensible in 1983 as they would be today. It is not simply a case of, "We know better now." The hospital should have known better then, in 1983. I would be the first to applaud the excellent pioneering work that the Royal Brompton hospital has done in the field of cardiac surgery. I am sure that the Minister will agree that the standards of treatment given to Sarah Lynch are not befitting of that institution.
However, given the Royal Brompton's continued stonewalling, and its obvious disdain for independent reports and expert opinions, the best way forward is a full public inquiry. There are serious problems with such an inquiry, which can best be summarised as time, money and lawyers. I accept that the Minister may have serious reservations about a public inquiry, but if one were instigated it would not simply be an inquiry into the case of Sarah Lynch. There are wide-ranging problems with cardiac services in the UK. I was not aware of it until recently, because I was concentrating on Mr. and Mrs. Lynch's case, but in August 1999, Mr. Ken Livingstone, then the Member for Brent, East, called for a public inquiry because of widespread concerns about failures at the Royal Brompton. The Bristol royal infirmary inquiry was under way, and 40 or so parents went to the hospital's family support group for advice and assistance. A whistleblower from the Royal Brompton hospital contacted the inquiry, and their evidence was referred back to the Royal Brompton, which led it to launch its own investigation. It appointed two cardiologists, who reported that there was nothing untoward. They tried to keep their work confidential, but it was reported in the press in August 1999, and many parents became agitated, because their cases were not considered in the review. At the moment that the review was concluded, therefore, a new one was announced to look at the issues affecting other parents.
We should consider, too, the question of what may have happened at the John Radcliffe hospital in Oxford. In November 2004, The Mail on Sunday reported that there was higher than expected incidence of mortality in paediatric cardiac care at that hospital. The Healthcare Commission refused to entertain the notion of looking further into the issue, but the Minister will know that that is no longer the case. In a report that was published only last week on 5 January 2006 and appears on the commission's website, patients and local people were asked to comment on their experiences of the adult cardiothoracic services provided by the John Radcliffe hospital surgery unit, which is part of the Oxford Radcliffe Hospitals NHS Trust, because of
"concerns raised through the analysis of recent data and by previous reviews about the quality of care at the unit."
The Minister will know that the standardised mortality rate at the John Radcliffe is twice the national average.
Four years ago, following the Bristol royal infirmary scandal, there was a public inquiry and recommendations were made. The report was 30 or 40 pages long, and made 198 recommendations, one of which was that the provision of cardiac services should be concentrated in fewer, more specialist centres, where surgeons would perform a greater number of operations, because it was thought that someone who does 50 or 100 operations a year will perform them better than someone who performs only a small number. The Government have explicitly rejected that recommendation. In a reply to my hon. Friend the Member for South Cambridgeshire (Mr. Lansley), the right hon. Member for Airdrie and Shotts (John Reid), who was then Secretary of State, refused to adopt the recommendation in the Kennedy report for the Bristol inquiry because
"it would require us to close some of the most successful cardiac centres in the country".—[Official Report, 20 January 2004; Vol. 416, c. 1208.]
Plainly, there will be a tension, as the Minister will be aware, between a concentrated expertise-driven approach and a devolved approach. However, that was only one of nearly 200 recommendations, so it would be timely and interesting to consider what progress has been made on the rest. In an article in the British Medical Journal, Dr. Paul Aylin and others looked at paediatric cardiac surgical mortality in England after Bristol, and in their final paragraph they concluded optimistically:
"Mortality at the Bristol Royal Infirmary has fallen markedly after the changes there, and a more gradual reduction in national mortality is evident from the time these data were first available . . . Whatever the reasons for the reduction in mortality, this seems to be good news for patients and parents."
I am sure that we would all say amen to that.
But that article, as the Minister probably knows, is also the one that exposed a potential problem at the John Radcliffe. The John Radcliffe denied that there was a problem. It questioned the accuracy of the statistical methods used for this paper. Although as Dr. Aylin, who stands by the findings—I spoke to him only earlier today—points out—
It being Ten o'clock, the motion for the Adjournment of the House lapsed, without Question put..
Motion made, and Question proposed, That this House do now adjourn.—[Tony Cunningham.]
Mr. Bacon: For a tiny second, I was worried. I do not propose to go on until 10.29; I would like to leave the Minister a bit of time and I do not wish to keep people here for the sake of it.
As Dr. Aylin said to me, the statistical methods used in the paper are the same ones that exposed the problems at Bristol. It is perhaps not a coincidence that the Healthcare Commission has now started looking at the John Radcliffe. So in addition to the wider issue of the recommendations arising from Bristol, there is the issue of the cluster that was exposed in 1999 at the Royal Brompton and the issue of the John Radcliffe.
There is also a more straightforward issue, if I may call it that, and that is about confidence in cardiac services. When we are dealing with individual constituency cases where we are worrying on behalf of parents who have suffered terribly, it is important not to forget to pay sufficient tribute to what is going on. Tremendous work is going on in hospitals throughout the country. There have been tremendous improvements in recent years. We are only too easily led to forget that doing a heart operation on a seven-week-old baby is an intensely dangerous thing to do. It may be the case that it is slightly less dangerous now than it was in 1983, but to describe any of these operations as routine, as I saw in the press not so long ago, is perhaps to miss the point. None of these is routine. A newborn baby of seven weeks has a heart the size of a walnut, so the work being done is of enormous importance. It is extremely complex and difficult and we should be grateful to the surgeons and pioneers who are doing this work. That makes it all the more important, when they are doing cutting-edge work, that there is a clear record of what has happened in each individual case, because we are probing at the frontiers, so that we can look back in any individual case and see whether what was done was appropriate.
I shall not delay the House much longer, but I want to say two things to the Minister. First, I have a copy of the Bell report for her. In her office yesterday I perhaps naively said to Mr. Chapman of the Brompton hospital that I assumed that he had furnished the Minister with a copy of the report, and it turned out that he had not. I was perhaps rather naive because I thought that the hospital would do everything that it could to help the Minister with relevant documentation, and this is nothing if not relevant, but it does not cast the hospital in a particularly glowing light, so on reflection I perhaps understand why it had not eagerly done that. But it is important to look at it. I hope that the Minister will take it away and study it. I was discussing it with Mr. and Mrs. Lynch this evening. When one reads it again and again, each time new points pop out. It is a detailed report of over 30 pages. I invite the Minister to appoint an official to look at it closely. I know that Mr. and Mrs. Lynch would be grateful for a detailed response to the conclusions of the Bell report. That is the narrow point.
I spoke to Dr. Dominic Bell earlier today and he makes a couple of points in an e-mail to me, which sum up the situation quite accurately. He says that there was
"a major identifiable professional omission related to audit, the evaluation of outcome from high risk surgical intervention, obligatory when undertaking 'cutting edge' surgery with multiple variables controlling the outcome . . . There is no evidence that when the clinical features of severe neurological damage became obvious, that either surgeon, anaesthetist or cardiologist considered causation and reconsidered any aspect of the process of care for the benefit of future cases.
Once that neurological injury was identified, the clinicians had a direct responsibility to ensure optimal care of the infant which involved referral to the appropriate specialists and a duty to inform the parents of why that was necessary. Care at this stage was characterised therefore by a dereliction of both clinical and professional responsibilities.
The lack of responsiveness, honesty and openness that has characterised the hospital's approach from the initial questions of the family right through to my investigation is out of kilter with public expectation and arguably indicates a broader malaise of ignorance or arrogance or both.
A duty of care extends beyond an examination, investigation, technical procedure or prescribing, and should be founded in an understanding of and sympathy for the plight of the parents with a profoundly ill child, who need to understand the problem, prognosis and plan and need to be able to trust the practitioner and the profession at this very vulnerable time. Empathy and communication do not appear to have featured highly on a list of responsibilities."
We all want to reach a position in which the treatment provided by every hospital, including the world famous Royal Brompton hospital, is regarded in the best possible light.
I hope that the Minister takes away the Bell report and studies it to consider what further steps may be needed. Will she consider either holding a public inquiry or asking the Healthcare Commission to expand its current review of work at the John Radcliffe hospital into a more wide-ranging review of paediatric cardiac services in the UK? Such a review could also include adult services, because the latest Healthcare Commission review concerns adult cardiac services rather than paediatric cardiac services. That would allow patients to have confidence in cardiac care in this country and, in particular, Mr. and Mrs. Lynch to receive public and open accountability from the Royal Brompton hospital for what happened to their daughter, Sarah.
The Minister of State, Department of Health (Jane Kennedy): I congratulate the hon. Member for South Norfolk (Mr. Bacon) on securing this evening's debate. He should not apologise for securing an Adjournment debate and is not detaining Conservative Members, who are here voluntarily to support him. I am not surprised that the hon. Member for Aylesbury (Mr. Lidington) is here, because I know how assiduous he is in advancing the case of his constituents—he is to be respected when one deals with him across the Dispatch Box, too. Before I get into the serious detail, I wish the hon. Member for South Norfolk well for his wedding later this month.
I acknowledge the hon. Gentleman's interest in the case and know that this particular matter is of great concern to him. If he and the family will forgive me, I will not respond in great detail to his careful exposition of the experiences of the Lynch family, the subsequent inquiry and the hospital's response. I want to express my sincere condolences to Sarah's family—the death of a child is always a devastating event, and I can understand Mr. and Mrs. Lynch's need to discover what happened during Sarah's stay at the Royal Brompton hospital. The hon. Gentleman has raised several points about the handling of Sarah's case and the response by the Royal Brompton and Harefield NHS Trust. However, I hope that he agrees that in line with patient confidentiality, it is probably not appropriate for me to respond to some of his detailed points.
People in all sorts of circumstances believe that a public inquiry is the only answer to their problems. The hon. Gentleman may not know - there is no reason why he should - that the Royal Liverpool children's hospital, which is more commonly known as Alder Hey, is in my constituency. It is a much loved and respected local institution, on which families with children across the north-west of England depend. However, the hospital's name was for a time synonymous with the retention of organs from children, many of whom were very sick babies. There was a strong call for an inquiry, which took place - it was a judicial inquiry rather than a full-blown public inquiry. The process resulted in clinicians who were not involved in the incidents that gave rise to the disquiet, and who were seeking to treat, look after and nurture very sick children, losing the confidence of parents at that time. It has taken some years for the trust to recover its position and for clinicians to feel that they have regained the confidence of parents in the region. The hon. Member for Aylesbury will know about public inquiries from our time in Northern Ireland, and we have mixed feelings about them. .
I will want to consider the points that the hon. Member for South Norfolk has raised. If he is looking for a detailed response, I will certainly give him that in writing following the debate. I will perhaps give greater thought to the idea of a public inquiry, which I had not considered before this evening, but it is not, instinctively, a solution that I would necessarily encourage.
Mr. Bacon: I understand the Minister's reluctance. She alluded to the Saville inquiry in Northern Ireland, which cost more than £200 million and has apparently never settled anything. In the Bristol case, it was notoriously reported that more than half the money ended up going to the lawyers. There are obviously big problems with public inquiries, but there should be other routes available. Perhaps there could be a Hutton-style inquiry, which could take evidence, before a non-clinician such as a senior judge or a Law Lord, or something via the Healthcare Commission. I hope that the Minister appreciates that there is a widespread nexus of issues and concerns that runs wider than Mr. and Mrs. Lynch.
Jane Kennedy: : I will come on to those wider concerns in a moment. I am aware that, as the hon. Gentleman described, Sarah's parents have been in contact with the trust over the past 20 years I hope that they can find a resolution to their ongoing concerns. He is absolutely right that it should be possible for that to happen, and in doing so to find a degree of comfort in the process.
Mr. Bacon: I want to say one further thing in relation to the Minister's comments about patient confidentiality. I think that I can speak for the parents when I say that given the events of the past 20 years and the very sad death of Sarah Lynch, I do not think that the parents would have an objection to the Minister speaking about this publicly or writing to them with more details. They would probably prefer it to be on the record. Although I appreciate that the Minister is not in a position to give detailed answers now, I was rather hoping, as I said to her yesterday, that the outcome of this debate would not be that she sits down at 10.30 pm and we have closure, but that she goes away and thinks further about these issues.
Jane Kennedy: I hope that I will be able to give some proper response to the very eloquent case that the hon. Gentleman has made.
No one wants their child to have to go into hospital. Any child having to attend hospital as a patient, for any reason, is a cause for concern for all parents, carers and relatives. As a parent of two sons who are now in their twenties, I know only too well that it is an anxious enough time when things go well. When things go wrong, there can be tragic results, and patients and their families, quite rightly, want answers to their questions and an apology if appropriate. Most often, they tell us that they want reassurances that no one else should have to undergo their experience and that all steps will be taken to avoid a similar incident arising.
There is nothing that we can do to completely take away parents' concerns and anxieties, but there is a lot that we can continue to do to improve the way in which hospitals care for children. Let me, for five minutes or so, describe what we have been doing. I am informed that the cardiac surgery that Sarah received back in 1983 was the most modern of its time. Without that surgery, babies, such as Sarah, born with severe cardiac abnormalities might have died before they were six months of age. Even now, the risks involved with major cardiac surgery on small babies can be high, as the hon. Gentleman said, and parents are sometimes faced with the devastating news that their baby might not survive.
A national review of NHS paediatric and congenital cardiac services was published in December 2003. That found that all units undertaking paediatric cardiac procedures were providing high standards of care for children. We were reassured by the findings of that report. However, neurological damage was, and continues to be, a major and often debilitating complication of congenital heart disease and open-heart surgery, even when the most meticulous steps are taken to avoid it.
I hope that the hon. Gentleman accepts that patient safety is at the heart of our agenda for improving the quality of NHS services. Indeed, I am the first Minister of State to have it as part of her ministerial title. Since 1997, we have been committed to building a better health service for patients everywhere. I am not trying to make a political response by saying that, but seeking to give the Government's position. We have established new, independent standard-setting and inspecting bodies.
Through national service frameworks, national standards are in place for the first time. Locally, trusts now have formal processes in place for systematic review and investigation of treatments and outcomes. Those were not previously in place. Indeed, I am informed that the Royal Brompton hospital has for some years had a formal protocol for reporting and investigating neurological injury, so that even the early clinical signs of possible neurological damage are now subject to much fuller investigation.
I am delighted to report today that an audit of significant outcomes for 2004/05 carried out at the Royal Brompton hospital states that no serious adverse events on children were reported. That is out of a total of 391 congenital heart operations, 66 of which were on babies up to one month old.
Mr. Bacon: I did not think for one moment that the Minister was making a political point and I fully accept that improvements have been made over several years and that is to be greatly welcomed. Item 1 of the Bristol inquiry—the Kennedy report—is that the patient should be at the centre of everything we do. I hope that that culture is developing - I stress "developing" - in the health service.
However, the patient was certainly not at the centre of everything we do in Mr. and Mrs. Lynch's case. It is encouraging to hear the Minister say that a protocol is now in place to provide for a neurological inquiry in the case of a neurological insult. However, it should be obvious that when there is brain damage, neurologists should be involved. That is common sense and it is extraordinary that such a protocol was not in place in 1983. To this day, the parents have never been able to get an open account and acknowledgement of what was done and not done in the case of their child.
Jane Kennedy: : I acknowledge the hon. Gentleman's points, which he makes passionately, and I understand the extra grief that has been caused to the family by what they perceive as the struggle that they have had to get the information. I understand that the expert reports from which he has quoted - not only the Bell report but the others - have not been shared with the trust. If that is the case, would it be possible for them to be shared with the hospital so that it could consider them?
Mr. Bacon: They could be shared with the trust and I would be happy to ensure that they were shared with Minister, too, although an offer was made at one point to make them available to the trust but it was rejected. However, I am sure that, after the debate, it would be interested in examining them and I hope that the Minister will be, too.
Jane Kennedy: I am grateful for that. I am always surprised at how rapidly time runs away with us but I wish to make some important points in response to what has been said.
As the hon. Gentleman said, Sarah's case occurred more than 20 years ago. In the past eight years, the NHS in England has begun to turn itself around. He knows that we have increased investment and even argued vigorously about how that has been done. However, it has enabled the NHS to provide better quality care to patients with safer and more effective treatment, better surroundings and better services. I want briefly to mention one or two of those other factors because not only the procedures have been improved. Protocols are now in place partly through learning and understanding from the experiences of families such as the Lynches.
Several well-documented reports in the past few years have commented in depth on poor communication with parents about to the risks associated with cardiac surgery and with parents whose children regrettably suffer brain damage—practice that was prevalent in the 1980s and early 1990s. Perhaps the most significant of those for Mr. and Mrs. Lynch has been the review of Sarah's case, which the hon. Gentleman described, by Dr. Dominic Bell. I have seen a copy of that and although I have not had a chance to read the full report, I have read the summary and the findings.
Following Dr. Bell's report in 2003, the trust acknowledged shortcomings in its communications with the family. It also recognised that there were some failings around the investigation into the power failure that occurred on the evening following Sarah's operation. Paediatric cardiology services have been reviewed extensively by successive inquiries. Much has changed. Significant investments of time, energy and resources have been committed to the paediatric service at the trust—I am not speaking in general terms here; I am referring specifically to the Brompton and Harefield—resulting in double the number of consultant surgeons in post, establishing the cardiac liaison nursing team, enhancing support for patients with neurological injury, and enhancing information and support to patients, parents and carers alike.
As the hon. Gentleman rightly pointed out, Sir Ian Kennedy's report into the events at Bristol provided us with a powerful analysis of the organisation and culture of the NHS in the years up to 1995. Responding to those concerns, we fast-tracked the hospital services module of the children's national service framework, which was launched in April 2003 and emphasised the need to design and deliver care around the needs of children and their families. We have taken on board the points that the hon. Gentleman quite rightly highlighted. .
The way in which health professionals present bad or difficult news is an important factor in how it is received, understood and dealt with. That can have a profound influence on the confidence and trust that a family has in the health professionals concerned. The national service framework recommends that staff should have training in the necessary communication skills to enable them to work effectively with children, young people and parents.
Mr. Bacon: Does the Minister agree that another important aspect of the communication process is preparing parents in advance for what might go wrong, because complicated procedures could cause problems? In the case of the Lynch family, as well as many others, this has been a significant problem.
all those factors form part of the communication needs, and the
professionals involved need to tread a fine line. I am sure that
many parents in such circumstances find such information hard to
take in. They are consumed with anxiety, in addition to having that
extra burden and possibly having to take a decision about what
procedures should be carried out. That is an enormous series of
problems to have to face.
Mr. Bacon: I am grateful to the Minister for giving way again. She has been extremely generous, and I have been extremely fortunate in having this extra time. Does she agree that any encouragement given to the Brompton by her at the Dispatch Box to be more open in its dealings with the parents, and to give an open and public account at the Brompton level of what has happened, would help to get these issues resolved?
Jane Kennedy: I would not say that only to the Brompton. One of the saddest aspects of my job is reading the letters that I get from Members of Parliament enclosing the experiences of their constituents who have written to say how everything went wrong and that nobody explained anything. All that compounds the sense of grievance. As I said earlier, most people just want an explanation of what happened, along with information, support and redress if they need it, and an apology if it is appropriate. Most of all, people want the reassurance that the institution and the professionals involved will learn from the experience.
I was talking about the electrical failure. After decades of underinvestment in the health service, 50 per cent. of the NHS estate in 1995 pre-dated the creation of the NHS in 1948. I am not making a party political point here. In 1983, the paediatric intensive care unit at the Royal Brompton hospital was sited in a building that was 93 years old.I would seek to reassure the hon. Gentleman, Mr. and Mrs. Lynch and Sarah's twin that the situation today, some 22 years later, is completely different. Modern technologies and generators are now more robust. Modern life-critical medical equipment now remains functional under power failure conditions, supported by local battery supplies. With the NHS continuing to invest in buildings, equipment and infrastructure, generators can now be replaced at regular intervals. A £17 billion national improvement programme is updating the NHS estate, and since Sarah's stay at the Royal Brompton in 1983 the paediatric intensive care unit has been re-sited in the new Sydney wing.
In relation to data and recording, improving paediatric intensive care has been a priority for this Government. The report entitled, "Paediatric Intensive Care: a Framework for the Future", published in 1997, recognised that clinical audit of paediatric intensive care concluded that the collection of data on outcomes from intensive care for children were not satisfactory. We therefore introduced a dedicated audit for paediatric intensive care, which collects data from the 29 lead units. We also recognised that it would take upwards of five years to achieve all the aspirations in the report, and we have therefore devoted £25 million of recurrent funding every year since 2000/01 for the improvement of paediatric intensive care.
Sadly, the improvements that I have described have come too late for Sarah, her parents and her twin. I understand that representatives of the Royal Brompton and Harefield NHS Trust have extended their sympathies to Mr. and Mrs. Lynch as well as an unreserved apology for the tragedy that they and Sarah suffered. I hope that this matter reaches a satisfactory conclusion Following the debate, I will read the Hansard account and the Bell report in full. I know that the trust would find it helpful to see the expert opinion to which the hon. Gentleman referred.
I want to extend again my condolences to Mr. and Mrs. Lynch. I stress, however that, as I said earlier, this is a matter for the NHS to resolve. I really hope that all involved are able to reach a positive outcome very soon. I am grateful to the hon. Gentleman for the opportunity to discuss the matter.
Question put and agreed to.
Adjourned accordingly at twenty-seven minutes past Ten o'clock.
|© Richard Bacon 2010|