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Health: Children's Heart Services

Volume 745: debated on Wednesday 12 June 2013


My Lords, with the leave of the House, I shall now repeat a Statement made earlier today in another place by my right honourable friend the Secretary of State for Health on the Safe and Sustainable review of children’s heart services. The Statement is as follows.

“With permission, Mr Speaker, I would like to make a Statement on the Safe and Sustainable review of children’s congenital heart services.

On average, around 3,700 heart procedures are carried out each year on children who have been diagnosed with congenital heart conditions. The mortality rates at Bristol Royal Infirmary, identified as far back as 1989, indicated that we are not as successful as we should be in such operations. The Safe and Sustainable review began in 2008 and set out to make sure that children’s heart services are the best they can be for all children across the country. Whatever the controversy about the location of such services, we all have a responsibility to ensure the best possible outcomes for children and their families, who must always come first in any decision about service provision.

Sir Ian Kennedy, in his Bristol inquiry report in 2001, recommended the concentration of medical and nursing expertise in a smaller number of centres. Subsequent working groups and reports have endorsed that recommendation, including the Royal College of Surgeons in 2007. The public consultation on the Safe and Sustainable review received over 75,000 responses. This was the largest review of its kind, conducted independently of government by the NHS.

In July 2012, the then Joint Committee of Primary Care Trusts—the JCPCT—on behalf of local NHS commissioners, decided that children’s heart surgery networks should be formally structured around specialist surgical centres in Bristol, Birmingham, Liverpool, Newcastle and Southampton, as well as Great Ormond Street and the Evelina Children’s Hospital in London. They recommended that services should no longer be provided in Leicester, Leeds, Oxford and the Royal Brompton and Harefield in London. Following the JCPCT’s announcement, three local health overview and scrutiny committees formally referred the JCPCT’s decision for me to review and I wrote to the Independent Reconfiguration Panel—the IRP—asking them to undertake a full review of the proposals.

On 30 April 2013 I received the report. I would like to thank the IRP for producing such a comprehensive review of such a challenging topic. It strongly agrees with the case for change, specifically that congenital cardiac surgery and interventional cardiology should only be provided by specialist teams large enough to sustain a comprehensive range of interventions, round-the-clock care, specialist training and research. I agree with their analysis.

However, the report also concludes that the outcome of the Safe and Sustainable review was based on a flawed analysis of the impact of incomplete proposals, and leaves too many questions about sustainability and implementation. This is clearly a serious criticism of the Safe and Sustainable process. I therefore accept their recommendation that the proposals cannot go ahead in their current form and am suspending the review today. NHS England will also seek to withdraw its appeal against the judicial review successfully achieved by Save Our Surgery in Leeds.

None the less, the IRP is clear that the clinical case for change remains, and its report is very helpful in setting out the way forward in terms of broadening the scope of the discussion, and looking in detail at the affordability and sustainability of the proposals. The IRP says—and I agree—that this is not a mandate for the status quo or for going back over all the ground already covered during the last five years. The case for change commands widespread support and understanding and we must continue to seek every opportunity to improve services for children.

The recommendations in the report set out what the IRP considers needs to be done to bring about the desired improvements in services in a way that addresses gaps and weaknesses in the original proposals. Specifically, they include: better co-ordination with the review of adult heart surgery services; expanding the detailed work on the clinical model and associated service standards for the whole pathway of care, beyond surgery; services to be fully modelled and their affordability retested; NHS England to establish a systematic, transparent, authoritative and continuous stream of data and information about the performance of congenital heart services; NHS England and the relevant professional associations to put in place the means to continuously review the pattern of activity and optimise outcomes for the more rare, innovative and complex procedures; NHS England to reflect on the criticisms of the JCPCT’s assessment of quality and learn lessons to avoid similar situations in its future commissioning of specialist services; and NHS England to use the lessons from this review to create with its partners a more resource and time-effective process for achieving genuine involvement and engagement in its commissioning of specialist services.

NHS England now must move forward on the basis of these clear recommendations and the Leeds court judgment. I have therefore today written to NHS England, and the local overview and scrutiny committees that originally referred the JCPCT’s decision to me, to explain that the IRP’s report shows that the proposals of the Safe and Sustainable review clearly cannot go ahead in their current form. It is right to give all parties some time to reflect on the best way forward, now that the IRP report is in the public domain, so I have asked NHS England to report back to me by the end of July on how it intends to proceed. In the mean time, it is important to stress that I believe that care for children with congenital heart conditions is safe in the NHS, and that ensuring it continues to be will be the top priority for all involved in this process.

I know that many families have found the Safe and Sustainable review to be a traumatic experience. People are rightly proud of the hospitals and the staff that have saved, or tried their best to save, the lives of their children. However, there is overwhelming consensus that we cannot stick with the model of care that we have now. To do so would be a betrayal of the families who lost loved ones in Bristol and who want nothing more than for the NHS to learn the lessons from their personal tragedies. So it is right we continue with this process, but it is also essential that it is performed correctly so that any decisions, as difficult as they may ultimately be, carry the confidence of the public. I commend the report and this Statement to the House”.

My Lords, that concludes the Statement.

My Lords, I thank the noble Earl for repeating the Statement and for reminding the House of the events which led to the Safe and Sustainable review. Terrible failings in the care of very sick children at the Bristol Royal Infirmary in the 1980s and 1990s led Sir Ian Kennedy to call for expertise to be concentrated on fewer surgical sites, a call supported by more immediate, recent events, including the suspension of children’s heart surgery at the John Radcliffe Hospital in Oxford in 2010. Since Bristol, Sir Ian’s important conclusion has had the support of the health professions and all sides of the House.

As we digest what the noble Earl has said, two considerations must remain foremost in our minds. First, this issue continues to transcend party politics; and secondly, the complexity it presents should not derail us from our determination to deliver the safest possible care for children in the country. That said, changes of this magnitude must be able to command consensus and public confidence and that has not happened since the decision on site selection by the joint committee.

When it was published, while the Opposition supported the reduction in sites, we expressed concerns about the distribution of the seven sites, skewed towards the west of England and leaving a large swathe of eastern England, from Newcastle to London, without a centre. For a family living in Hull or Lincoln, the prospect of leaving home to travel hundreds of miles, with the cost of accommodation and time off work, added to their stress and anxiety. Therefore, it is not surprising that there has been such strength of feeling, particularly across Yorkshire, the Humber and east Midlands. While clinical safety must predominate, does the noble Earl agree that the NHS needs to give further consideration to public access and travel times when reconfiguring services? In this case, as the IRP points out, the joint committee considered access the least important factor. The IRP concluded, surely rightly, that the decision used a flawed and incomplete analysis of accessibility. Going forward, can the noble Earl tell me that his department will ensure that that is corrected and that access will be a significant factor in a future decision?

On the review itself, the noble Earl will know that one main concern has been that mortality data were not given enough weight. While decisions on this cannot be based on death rates alone, we agree with John Deanfield, the director of NICOR, who, in his letter to NHS England in April 2013, said:

“Mortality is only one measure of quality, but currently is the most robust available outcome”.

Will the noble Earl confirm that, in the further process of review announced today, these data will feature more prominently?

The main concern we have with the announcement that the Government have made today is the proposal to link the children’s review with the review of adult heart services and the implications that might have for the timetable. The Statement uses the words “better co-ordination”. I understand that about 30 centres are carrying out adult heart surgery. The seven selected centres for children will not be collocated with adult heart surgery. As the noble Earl knows, there are a number of specialist children’s sites. The link between the children’s sites and the adults’ sites is not at all clear. Is there a danger that, by linking the review with adult heart surgery, the Government risk a loss of focus and, indeed, more delay? By broadening it in this way, is there a danger that we will lose the consensus that has already been gained over the future of children’s heart surgery?

The decision will clearly have implications for the timetable of the children’s review. It is noticeable that the Statement does not really contain a clear timetable. Can the noble Earl set out a more precise timetable for when the actual decision is going to be made?

I wonder whether the noble Earl has seen the response from the Royal College of Surgeons today. It expressed disappointment that the reform plans will be suspended, adding to what it describes as a long and exhaustive process. In its final comment, it urges NHS England to act swiftly and decisively, and says:

“Continued foot dragging will only delay the much needed reform that will ensure children will get the best treatment available”.

Can the noble Earl respond to that? He says that the review will be concluded by the autumn, but the question here is when decisions will be made and, even more importantly, when they will be implemented.

The Statement sets out a major role for NHS England going forward. Can I be assured that, in the process that NHS England takes forward, it will operate independently of interests linked to the selected sites? Does he agree that it is vital that we do not lose confidence in the process and damage confidence in all 10 existing services? I noted what he said in reassuring the House about safety. I welcome that, but is his department taking action to ensure that all existing units will not lose expertise in the intervening period? That will be a source of concern the longer the review takes and the longer the decision takes to make.

It is clearly important that public confidence in the process and the final decision is maintained but, balanced against that, unnecessary delay will not bring the best results for the children who most need our help. In that regard, I should like to ask him about the comments made by Sir David Nicholson, the chief executive of the NHS, at the annual meeting of the NHS Confederation last week. In an interesting speech, he said:

“We cannot let the tyranny of the electoral cycle stop us from making the real and fundamental changes that we need to make to the NHS”.

He went on to say:

“So what happened when we got a new government in is we wasted those two years where you can really make change happen. We spent our time talking about reorganisation and changes and all the rest of it and we didn’t talk about the really important changes that are required for the NHS”.

I am quoting that because the election is less than two years away. Can the noble Earl reassure me that the electoral cycle is not going to get in the way of coming to a sensible and speedy decision?

My Lords, I am grateful to the noble Lord, Lord Hunt, for his measured comments. I agree with many, if not most, of them. I certainly agree that party politics should play no part in this matter. That is one reason why in 2008 his Government decided that the Safe and Sustainable review should be a process set apart from the Department of Health and led by the NHS. We agree with that and still believe that it should be NHS-led. I also agree with what he said about the complexity of this issue being no excuse for not proceeding as fast as is safe and possible with a process designed to see a satisfactory resolution of this issue. That is certainly our view.

I also welcome what the noble Lord said about public confidence. It is clear that parts of the Safe and Sustainable process sadly did not command public confidence, not least in Leeds, but also in Leicester and other places. The noble Lord will no doubt have noticed, in the IRP’s press releases today, the emphasis on openness and transparency in the process going forward. NHS England has also made clear that whatever the process that it recommends going forward, it should involve the maximum amount of consultation with those concerned, not just the clinicians in the centres involved, who are of course very important, but also patients and their families.

The noble Lord referred to the need for greater consideration to be given to access and travel times. I noted an emphasis on that very point in recommendation 4 of the IRP’s report. They clearly matter to families, as was very much picked up by the IRP in its work engaging with stakeholders. In agreeing to address all the recommendations of the IRP report, which NHS England has done, it could not fail to address that part of the recommendation.

With regard to mortality data, I am sure that the noble Lord will understand that when we are dealing with a procedure as complicated and specialist as children’s congenital heart surgery, while transparency of data is certainly an objective, it is important that the data published are not open to misinterpretation. Mortality data are a problem that beset this kind of area because the numbers are small. They must also be presented in a way that is understandable to the public as well as to clinicians. For the most part, clinicians already have this data, but it is important going forward to ensure that when we publish data, there is genuine comparability between the various centres in terms of the outcomes denoted.

The noble Lord rightly said that, by introducing the dimension of adult cardiac surgery, the IRP had added greater complexity to the whole issue. There is no doubt that that is true. All I will say to him is that this was by far the longest and most complicated review that the IRP has undertaken in its 10-year history. It took evidence over 25 full days. That alone should indicate that the opinions that were tapped were very extensive. The IRP did not come up with this recommendation lightly. Although it adds complexity, it behoves NHS England to take that point extremely seriously.

As regards the timetable for the work going forward, my right honourable friend the Secretary of State has asked NHS England to provide him with an interim report by the end of July. NHS England’s press release states:

“We will take the time to listen before coming up with a new proposition, working with patients, clinicians and the providers of services. We intend to announce a new way forward in the autumn, with plans for implementation within 12 months”.

I believe that is an ambitious aim given the added complexity, but it indicates that NHS England is conscious of the need to make progress in this area as rapidly as possible. As soon as I have further information—no doubt at the end of July or shortly after—I will ensure that the House is made aware of it.

I have seen the Royal College of Surgeons’ press release. It is impossible to disagree with it that this is a disappointing state of affairs. Everyone would like to see this issue resolved. Nevertheless, the points the college makes, which were reflected in the noble Lord’s points about the need for expedition in this area, are absolutely right. The noble Lord was also right to say that over the coming months we need to make sure that all the units, which do such a fantastic job in this very complex area of clinical delivery, are supported and feel that their work is appreciated. It is certainly important that we do not see a draining away of expertise. The clinicians in the various centres should now see this as an opportunity to present their case even more fully than they did before. I hope that they will welcome that opportunity.

As regards the tyranny of the electoral cycle, I hope that in my opening remarks I expressed my agreement that that should not play a part in this. In so far as we can divorce decisions of this clinical magnitude from politics, the better it will be. We should achieve that if this process is as consultative and open as possible, as everybody wishes it to be.

My Lords, I take us back to Sir Ian Kennedy’s review 12 years ago in which he made it crystal clear that unless we significantly reduced the number of these centres, children would continue to die unnecessarily. That was the brutal conclusion of the Bristol inquiry. Has anything come out of the IRP review that fundamentally changes the July 2012 decision of the Joint Committee of Primary Care Trusts that seven centres, with clinical networks built around them, was the right number? As I understand it, the argument is not necessarily that seven was the wrong number of centres, but that the wrong seven were chosen. Are we not now opening up the whole issue of the relationship with adult services, which will take us back to a situation where we start to review from the beginning the appropriateness of the particular centres? Do we not need to get back to where the JCPCT was when there was a good deal of consensus around the idea that seven was the right kind of number? The issue is really about east coast versus west coast, and the danger of this report, thorough though it may be, is that it will now reopen all the issues on which we had actually made a good deal of progress by 2012.

That is indeed the core of the disappointment felt by the clinical community and noble Lords: that we are little further forward in terms of deciding exactly where these services should be delivered. The noble Lord is also right to say that support for a philosophy of improving children’s heart services by concentrating surgical expertise to provide round-the-clock cover and develop networks of care is as strong as ever. There is a rare consensus on the clinical case for improving services on the pathway of care for children. The IRP has said that its report is not a mandate for going back over the ground of the past five years; indeed, it commends a great deal of the work done by the JCPCT. The IRP says that that work should be built upon. The JCPCT should not necessarily feel bruised by this, although I am sure that it will feel thoroughly disappointed. However, its groundwork has been publicly appreciated, and it is now for NHS England to take that work forward as swiftly as it can.

My Lords, I speak as the patron of Little Hearts Matter, the organisation that represents a large number of families who have children with heart conditions, particularly hypoplastic left heart syndrome, which is extremely serious and needs highly skilled intervention. Who does the Minister think is most disappointed about the failure of the review? I probably meet more families and children than most of your Lordships—children who await open heart surgery or extremely complex technical interventions, and whose anxiety is huge; and parents who thought that they were going to have clear answers on where their children would receive treatment and on the quality of those interventions at the end of the safe and sustainable review. I ask the Minister to take back with him all those disappointments and to look not only at safety, which is key to the families. Many of them would travel to wherever you took them if they were sure that the operation would be successful. As a woman from Yorkshire and the east of England, I understand that gap, but what the families want most is quality of service.

As the noble Lord, Lord Warner, pointed out, there is also great disappointment about the link being made with adult services because of where those services are located. Despite the review, there is a lack of understanding of the needs of children. There are certainly transitional difficulties and I ask the Minister whether it is those issues or other issues that have led to children being considered alongside adults. Will he take away with him the disappointment felt by families who are waiting longer for interventions because this has caused delay?

My Lords, I am accountable to this House for government policy, but it is important for the noble Baroness to understand that this has been an NHS-led review. Many of her questions are for NHS England now to address. Of course there will be huge disappointment and concern among the families of those who require surgery in this area. I want to emphasise that until a decision is reached, the centres now delivering children’s heart services will continue to do so and will be fully supported in doing so.

However, we cannot ignore a series of recommendations from the IRP that has roundly criticised the methodology of the JCPCT. It concluded that the JCPCT’s way forward was flawed because the analysis was insufficiently thorough. If our aim is to improve the quality of outcomes for these children, I do not believe that it is in anyone’s interests to try to say to ourselves that we can make do with a half-good set of solutions. I do not suggest that the noble Baroness is saying that; of course she is not. We need to be thorough about this without spending another 10 years over it. I hope that I have given the sense to the House that NHS England is determined to progress this rapidly but thoroughly and, above all, in a consultative way. The families will have a chance to have their say in that process.

My Lords, I remind noble Lords that these should be brief interventions. We have only had two thus far and we are seven minutes in. I suggest we hear the Bishop, then from these Benches and we try to get around.

My Lords, I am grateful to the Minister and I am also grateful to the Leeds group Save our Surgery for persisting with criticisms, at least some of which seem to have been justified, as they pursued this. I am particularly grateful for the affirmation that children and their families must always come first. Will the Minister also accept that nothing about us should be done without us? Therefore, will he ensure that families, local communities and, indeed, the case for keeping cardiac and other children’s services in our hospitals are heard, in addition to the clinical professionals?

I can readily agree with the right reverend Prelate. I think it is illustrative of the IRP’s approach that in its press release it states:

“The critical factor to consider, in the Panel’s view, is that engagement of all interested parties is the key to achieving improvements for patients and families without unnecessary delay. There is now a real opportunity to involve patients, the public and other stakeholders in taking work forward as set out in the Panel’s recommendations”.

I endorse that view wholeheartedly, and it is a point that has been directly picked up by NHS England in its press release today.

My Lords, will my noble friend give an assurance that when calculating where centres should be located, account is taken not just of population numbers, but of the make-up of that population? He will know, for example, that children of Asian descent have greater need for these services than other communities, making up 23% of cases at Leeds. Their faster growing population must be taken into account.

I hope that my noble friend will be reassured by the IRP’s recognition that the location and geography of these centres and where they are in the country are material factors in this equation. At the same time, I think it would be wrong to give the impression that one can establish a centre of expertise of this kind in every city; that is clearly not realistic. Merely because there is a certain density of a population in a location does not mean to say that there can be a children’s heart centre very close to the centre of that population. This is a highly specialised service and we must recognise that the centres that will deliver it will be few in number. Nevertheless, I am sure that the message that my noble friend has given will not be lost on NHS England.

My Lords, it is critical that however NHS England proceeds, it does it openly and transparently. I welcome the Minister’s comments on that. Will he also agree that meetings of any review body should be advertised, public and make all necessary papers available to the public?

I agree that transparency in the process is vital, and I have no doubt that NHS England, in saying what it has today about its general approach to this, will bear that very point in mind.

My Lords, does the noble Earl recognise that in Leeds there will be a great sense of justification regarding the criticisms of the process previously followed and a welcoming of the forensic critique by the latest panel of that process? While it is certainly important that collocation of services is not essential to the provision of children’s heart surgery, does the Minister agree that, where there is outstanding and deliberately engineered collocation of high quality, that is an important factor in the future location of children’s heart surgery?

The noble Lord makes another very good point, and Recommendation 3 of the IRP report focuses on that very issue. It says:

“Before further considering options for change, the detailed work on the clinical model and associated service standards for the whole pathway of care must be completed to demonstrate the benefits for patients and how services will be delivered across each network”.

Therefore, that point has been explicitly recognised.

My Lords, the noble Earl has explained with his customary clarity the reasons for this further delay. However, surely he would agree that, in the ultimate, the decision that is eventually reached must be based on quality of service and quality of outcomes. This must surely be the guiding principle throughout. I fully appreciate the concerns expressed by the people surrounding the units that were originally marked for closure, but I have to express a personal avuncular interest in Freeman Hospital in Newcastle, which, according to all international comparisons, is producing results in paediatric and adult heart surgery that stand comparison with the best cardiac centres in the world. I know that this further delay is going to cause concern and further damage morale in that unit. I only hope that in the long term it does not have any effect on the efficiency of the service. Let us hope that this review is concluded as quickly as possible.

My Lords, I pay tribute to the work done in Newcastle in this extremely complex area of surgery. The noble Lord knows that hospital better than anyone in this House, and I understand the disappointment felt in Newcastle about this decision. Nevertheless, I would slightly qualify the comment that he made at the beginning. Although I agree that the decision must depend on outcomes and the quality of care, it must also bear in mind the sustainability of the service into the future. While we can recognise good care when we see it now, we must be sure that the service is capable of being sustained on that level into the future.

Is the Minister able to tell us how many vacancies currently exist among highly specialised staff in children’s heart units and what NHS England is doing to monitor vacancies? During a time of uncertainty, when staff do not know what their future will be, recruitment problems can arise, and where vacancies occur at a very senior, highly specialised level, that in itself can threaten the quality of the service and indeed jeopardise long-term sustainability.

I do not in fact have any statistics on vacancies, although if I can acquire them I shall certainly pass them on to the noble Baroness. However, the central point that she makes is of course right, and the second recommendation made by the IRP relates to the need to have sufficient staff in place to deliver a safe service. It says that patients should receive this service,

“from teams with at least four full-time consultant congenital heart surgeons and appropriate numbers of other specialist staff to sustain a comprehensive range of interventions, round the clock care”,

and, interestingly,

“training and research”.

I think that that sends a signal that will resonate with many noble Lords in the context of debates that we have had in the past about centres of excellence in the NHS.