Congenital Cardiac Services for Children

Greg Mulholland Excerpts

Thursday 23rd June 2011 Commons Chamber

[Stuart Andrew]

That is a very good description of the meeting. I agree with my hon. Friend. If nothing else, it is good that this debate got the review board to come to Parliament and speak to MPs so that we could express our concerns.

On the case for Leeds specifically, as I said a moment ago, co-location of services is considered crucial by the BCCA. In Leeds we have one of the largest children’s hospitals in the country. A considerable amount of time has been spent bringing all the children’s services under one roof at Leeds General infirmary. The centre serves a population of 5.5 million. I cannot understand why the option has not been considered for Leeds when it has been considered for centres in Birmingham and Liverpool. Yorkshire has a growing population and a growing BME community. As I said, 20% of the patients come from that community. It is crucial that we take account of population numbers when considering the review.

How we care for all those families is also important. When I worked at Martin House children’s hospice, it was not just the care of the poorly child, but the care of the whole family, that was important. When people have a very poorly child, they want their family to be together. It has been said that parents will travel anywhere. Of course they will, but does that mean that we should make them travel when there could be alternatives?

The Yorkshire and Humber congenital cardiac network board has a well-established network model, is regarded as an exemplar in this country and is held in high regard across the region by both the professionals and the patients involved in the service. Although this was recognised by Sir Ian Kennedy’s expert panel and Leeds Teaching Hospital Trust was awarded the maximum score for networks in that assessment, the JCPCT, as part of the scoring of options for future configuration of centres, gave all potential networks the same score. It is unclear why a proven track record of delivering an exemplary network model was not considered an important factor in the ability to deliver this across a larger population and greater geographical spread in the future.

On the requirement for a minimum of 400 operations, Leeds delivered 316 cardiac operations in the 0 to 16-year-old group in 2009-10 and 372 in 2010-11. The process of recruiting a fourth surgeon is under way. By the time the review’s recommendations are implemented, Leeds Teaching Hospital Trust will deliver the minimum number of operations, which is 400, and it will have the minimum number of surgeons, which is four, that the standards require from within the current population base. Equally, Leeds Teaching Hospital Trust has provided detailed information to the Safe and Sustainable team for expansion of the current service, should it be required to deliver a change in capacity to support patients from a centre that does not get designation.

The review said yesterday that the debate is not about current services. It is about what will be provided in the future. The figures that I have cited show that Leeds’ case for being a centre caring for more than 400 patients is strong. Many patients and particularly clinicians have pointed out to me that it seems odd that we are having a review of children’s heart services without referring to adult services. Many of those patients will be the same: those children will grow up, and the doctors who perform the operations are often the same people caring for both groups, so why are we not looking at adult services now? It has been suggested that that review should come later, but if we have made decisions about children’s heart surgery, surely we have pre-empted what might happen in the future.

[Greg Mulholland (Leeds North West) (LD)]

I thank my hon. Friend and neighbour for giving way. Going slightly further on his last point, does he realise that if those surgeons are no longer there, they will not be able to perform operations on adults? Adult surgery would be very detrimentally affected.

[Stuart Andrew]

I could not agree more. My hon. Friend is right; if we have a review of children’s cardiac services, surely we must consider what will happen to adult services. We should be talking about that now.

I could go on much longer and talk about the cases of various parents whom I have met, but I know that other hon. Members will do that, probably far more eloquently than I could. I am keen that the motion is supported because I want it to send a clear message to the review team that we are asking it to consider all the points that will be made today and all the points that have been made by the campaigns across the country. It was a privilege to go to Downing street the other day with children, patients and clinicians from the Leeds centre to present a petition of more than 500,000 names. That is a significant petition by anybody’s standards and a credit to that campaign.

I am concerned that after consideration of the consultation responses, it will be difficult to respond to all the evidence by pigeon-holing them into the four options in the review. That is why our motion today urges the joint committee not to restrict itself to those four options and instead to think outside the box, as they say. Let us look at a different proposal that delivers the services and the quality that we want and also takes account of all the responses that we have received.

Finally, I want to pay a personal tribute to all the families and campaigners, especially in Yorkshire and the Humber. In all the campaigning that I have ever done, I have never seen such a well-organised and dedicated campaign. The subject is sometimes emotional, but the responses that have come from patients across Yorkshire shows that there can be an alternative that delivers the services that we want. I hope the House will support the motion.

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[Mr Mudie]

I entirely accept that, and I did not intend to suggest that the right hon. Gentleman had said anything different. My point is that, while the clinical case for a rationalisation is unarguable, equality of access is as important a consideration as any. Excellent treatment must not be available to only a certain number of people.

[Greg Mulholland]

We all accept the clinical premise of the review, but is it not incredibly arrogant for anyone to suggest that it cannot be fallible? There are obvious flaws in it. Many clinicians themselves say that it is flawed.

[Mr Mudie]

I hear what the hon. Gentleman says. I think that the same case was made by the right hon. Member for Charnwood. We may prevaricate for one reason or another, but sometimes it may be necessary to make a decision even when we think that it is not perfect, and I think that this is an instance of that. If the life of a child is involved, we must make a decision.

If we continue to challenge the clinical aspect of the review, we will fall into the trap of allowing a bad situation to continue. The case for change has been proved, and, while we may differ on how that change should be made, what is important is for us to express the view—and I should like to see it challenged—that there should be equality of access. Each region should ensure that every part of it has equality of access where possible, although that will involve some difficulty if Yorkshire is lumped together with the north-east.

In the last year I have had to move from my constituency office, which was in the centre of the constituency. I was offered cheaper, perhaps even better, accommodation in the outer part, but I felt that it would be unfair on the other wards for me to move away from the centre. If option 4 is either Leeds or Newcastle, I think that that is unfair on both. I do not want to close Newcastle, and Newcastle does not want to close Leeds. Locating provision sensibly in each region is important, but the House should also recognise, as it rarely does, that the country has some corners in which there is no equality of access in any respect. Those in Newcastle, in the top corner, and those in Cornwall, in the bottom corner, do not have access to many facilities that are accessible to people in the midlands, in Yorkshire and, above all, in London.

I believe that the House should accept the motion, and that the review team should forget about the clinical arguments and produce a template that proves to every Member that the excellent services that we should be demanding for children’s care will be shared equally around the country. The team should give some real, positive, out-of-the-box thought to how to deal with areas that generally lose out.

[Greg Mulholland (Leeds North West) (LD)]

It is a pleasure to follow my Leeds colleagues, and it is a pleasure to work with all the Leeds and Yorkshire and Humber Members of Parliament throughout the House in support of the inspiring campaign to save the Leeds unit. I too was proud to be there to help present that remarkable petition. Nearly half a million people in the region have spoken out in an attempt to save the unit. When I visited it, I had the same experience as other Members have had when visiting their local units. I found it incredibly moving to meet those babies and children and their families, while also being conscious that I was walking into a centre of excellence. It benefits from a genuine co-location of services, which is the gold standard that has been set, and 370 operations are already being performed there—very close to the 400 figure.

[Mr Kevan Jones]

I note the size of the petition, but as a former Defence Minister responsible for defence medical services I faced similar petitions when the Ministry of Defence was concentrating military health care at University Hospital Birmingham NHS Foundation Trust, which is now a centre of excellence not just in this country but internationally. Although petitions are valuable, clinical outcomes must be at the forefront of any decision, and the MOD’s decision to concentrate defence medical services at Birmingham was the right one.

[Greg Mulholland]

It would be very worrying if the extraordinarily overwhelming views expressed by people were ignored, but of course the clinical view is vital, and, as I have said, many clinicians have a problem with the flaws—clinical flaws—in the review.

[Stuart Andrew]

My hon. Friend mentioned the co-location of services. As I said in my speech, Leeds has spent considerable time ensuring that all children’s services are under one roof. If we lost the heart unit there, might not other services be affected as well?

[Greg Mulholland]

I have not yet had a chance to congratulate my hon. Friend on the way in which he has co-ordinated our campaign. It has been a pleasure to work with him so closely, and I look forward to continuing to work with him and other colleagues. He is right: one of those serious flaws is the failure to consider the impact on adult heart services, which would be a huge problem.

There is real concern out there, as has been demonstrated not only by the petition in Yorkshire and petitions in other parts of the country, but by the views expressed by many respected practising and retired clinicians. The concern about the closures is understandable, but there is also concern about the review itself. There is concern about the process, about the conclusions reached so far, about the lack of consistency in the recommendations, about the lack of logic in relation to the premise of the review, and, I am sorry to say, about a lack of impartiality.

That is why it is right for the House to have an opportunity to express that concern on behalf of all the areas concerned, and why it is fitting that the Minister of State, Department of Health, the right hon. Member for Chelmsford (Mr Burns), is present. I thank the Minister for the way in which he has engaged with us, and I urge Members in all parts of the House to support the motion, so that we can address the concern that has been expressed outside and inside the House by considering the possibility of other configurations.

I wish to echo three points that have been made about the wonderful Leeds unit. The first is about the co-location of services. The unit is a case of true co-location, which is what the British Congenital Cardiac Association has called “gold standard” care. Leeds is currently one of only two hospitals shown in the review to have such a type and level of service. Mr Joe Mellor, a consultant anaesthetist at Leeds, says:

“What is particularly upsetting about the proposals is that our patients from Yorkshire would leave the Leeds unit and have to travel to Newcastle or Leicester. Leeds has centralised all its children’s services onto one site. Neither Newcastle nor Leicester have come close to achieving this. Congenital cardiac surgery is a very complicated form of medical treatment. If in Leeds we encounter a problem where the child needs the help of an intestinal surgeon, or a neurosurgeon, or need renal therapy, or a host of other possible therapy, then we get it immediately in our own children’s hospital.”

Jonathan Darling, a consultant paediatrician at the Leeds General infirmary, states:

“To lose heart surgery from the Leeds Children’s hospital would be a huge blow, especially when we have just centralised services precisely to realise the benefits of having all paediatric services co-located on one site. The Review process does not seem to give sufficient weighting to this true co-location.”

I am afraid that it simply has not done so, which is worrying and quite extraordinary.

The second point that I wish to make is on the issue of population, which colleagues from the region have already raised. It simply makes no sense to close a wonderful unit that is already performing almost the number of operations that it must, when there are so many people in the area and the population is growing. I echo the comments of the hon. Member for Leeds East (Mr Mudie) when I say that of course we do not want to see the Newcastle unit close. We do not want to see any unit close, because this is about getting things right. However, I say to him and others that it would be absolutely perverse to close Leeds simply to enable Newcastle to perform a sufficient number of operations. If we stick to the number in the review, Newcastle can only perform that number of operations if Leeds closes. That is absurd.

[Mr Mudie]

The point I was making was that if we are to take the review’s point and place units strategically, the obvious place with a mass population is Leeds. However, I said that that would leave Newcastle out on a limb, and something has to be done about that. The case for Leeds is unchallengeable.

[Greg Mulholland]

Indeed, and we have to get the point across to colleagues in other areas that perhaps we have to challenge the premise of the review and some of its figures if we are to reach other recommendations.

The third matter that I wish to mention, as the hon. Gentleman did, is travel. In the meeting yesterday with the review team, I was frankly dismayed by how little consideration was being given to the reality of ordinary working families and the effect that having to travel would have on them. I shall give a couple of examples. Johanne Walters, the mother of Emma, states that to them the change

“would mean her…surgery will be undertaken miles away from home and nobody would be there to support me—no family no friends—and it is incredibly difficult being there 24/7 at your child’s bedside, even with this support”.

Joanne and David Binns, whose son Oliver has been treated, have said:

“Oliver is our only child, and I’m sure you can imagine how it turned our world upside down. But we knew that we had family and friends who could just pop in and make us some food at the end of a long day, bring us clean clothes, and just be there if we needed a chat. I can’t imagine how much extra pressure it would have been at this point to have to think about long distance travel and accommodation on top of everything else.”

Matthew and Karen are the parents of Liam Hey, a constituent of mine who has become something of a celebrity. He is a wonderful young man who is being treated at Leeds. Karen has said:

“My son would not be here if it wasn’t for the LGI. It would be too much of a trauma to transfer children to another place.”

Travel has simply not received adequate consideration. It comes out top of the criteria that people give when we ask them, but it is not anywhere near the top of the list of the review’s considerations. That is wrong.

We have to re-examine the situation. I am delighted that the House has had a chance to debate it today, and that Ministers have been so accommodating in enabling us to do so. I urge the House to support the motion. We should come back with some proposals that will really work for children and that we can all support.

[Several hon. Members]

rose—

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[Craig Whittaker]

I apologise if I left out women.

[Greg Mulholland]

Let me too say that it is a pleasure working with my hon. Friend, but can we debunk this myth that we are talking about a review without flaws that is based on clinical guidelines? Option B, which he mentioned, does not even get us to 400 operations for some centres. In too many places the review does not even follow its own logic.

[Craig Whittaker]

I agree with my hon. Friend, who is absolutely right. This comes back to my basic premise, because all we are asking for is an open, honest and transparent process that will produce the desired outcomes.

Last year, one of my constituents, Miss Libby Carstairs, spent many months in Leeds hospital and underwent heart surgery several times over several months. As we know, the aims of the consultation clearly show that parents would take their child anywhere to get the best treatment when they are as poorly as Libby is and was. Under the proposals, Libby would have gone backwards and forwards several times, probably between Newcastle for surgery and Leeds for her convalescence. Currently, her care and surgery all happen in one place. As with all families at such a stressful time, it was hugely beneficial that the family could visit regularly and help in the convalescence period. Libby’s mum spent her life in that unit with her, and her grandparents played a huge role with relief and support. Libby’s being in Leeds even allowed her head teacher, from Carr Green primary school, the opportunity to visit and take messages of support from her classmates and friends. I saw first hand not only how that cheered Libby up, but how it helped to fast-track the recovery of this poorly little girl. It also without question helped Libby eventually to go home, albeit with high levels of support. Such support from family and friends would not have been possible had Libby been up and down to, say, Newcastle or Liverpool, which are many miles away.

Although the main principle of parents taking their child wherever they need to go to get the best treatment is absolutely correct, it does not take into account the loss of income to the family through not being in work, the huge cost of travelling much further distances, and the incredibly important network of support from family and friends at what is an awfully frustrating and stressful time for everyone involved—the big society at its best, as it were. I cannot imagine what it is like not to know whether one’s child is going to live or die, so I cannot begin to comprehend the full extent of the support needed and appreciated by families.

Contrary to the e-mail received yesterday, MPs do understand the process, as do the 500,000 people who have signed the petition. However, it is scandalous that Leeds fits into only one of the four options, particularly as vital information has been missed out of Sir Ian Kennedy’s assessment. To sum up, if the Government are big enough to listen to the people and amend their proposals on issues such as the NHS and jail, surely clinicians at the JCPCT should be big enough to review their plans, by listening to what 500,000 people from Yorkshire, Humberside and Lincolnshire are telling them to do.

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[Mr Burns]

I am grateful to my right hon. Friend for that intervention. With regard to Leeds teaching hospital, he will know that this is a complex issue. There are 36 different surgical procedures listed on the central cardiac audit database, but the three most relevant ones in the context of his question are those that deal with atrioventricular septal defect, arterial switch and Fallot’s tetralogy. Over the past six years, 304 operations have taken place involving those three specialties. Sadly, the number of patients who died within 30 days was 12, and 18 died within one year. The results of surgery in all units are good, with no significant divergence. The issue, however, is the future. We need to prepare for units that can deal with these highly complex procedures and the intense technology needed, and provide the qualified doctors and nurses involved, in order to keep up with professional and public expectations of the high quality of care required. This is not so much about today’s figures as about how we meet the challenges of the future to provide the finest and safest possible care in this deeply complex area of medical treatment.

The consensus among professional associations is that there should be no fewer than four congenital surgeons in a centre, each performing between 100 and 125 procedures every year, for a centre to be optimally staffed. Over the past few years, the outcomes for the services have remained good, as the figures that I have just given to my right hon. Friend illustrate, but there have been several warning signs that the current arrangements are fragile. For many years, professionals and national children’s charities, including the Children’s Heart Federation and the British Heart Foundation, have urged the NHS to review services for children with congenital heart disease. They have consistently raised serious concerns about the risks posed by the unsustainable and sub-optimal nature of smaller surgical centres.

Many of the 150 types of operation undertaken by these dedicated teams are among the most complex, challenging and technically demanding areas of surgery. Success requires intricate surgery on hearts often no bigger than a walnut, coupled with finely balanced judgments drawn from a combination of advancing science, personal experience and compassion. It involves a range of highly trained individual team members—before, during and after the operation.

The risks posed by the complex nature of heart surgery include not just possible death after surgery, but lifelong complications such as brain damage and other disabilities. The judgments of any expert medical team caring for a particular child therefore have a direct and long-lasting impact not only the future of each vulnerable child, but on that of their families.

There is also the issue of recruitment. The fact is that smaller centres have problems with recruiting and retaining the very best surgeons. There is a risk that those working in smaller centres will find themselves working in isolation and in units that are not as up-to-date with techniques and clinical practice as the larger ones are.

[Greg Mulholland]

We all understand the premise of the review about the need to move to larger centres, but does the Minister not understand—I am not trying to draw him—the real concern when Leeds is performing 370 procedures a year and Newcastle, a smaller unit, performed only 255 last year, yet Newcastle is in all four options and Leeds only in one?

[Mr Burns]

I fully appreciate the hon. Gentleman’s point, but I hope that he will appreciate that he is now trying to draw me into a discussion on the merits of Leeds as against Newcastle. As I said earlier, it is inappropriate for me as a Minister to do that. However, it is a point that the hon. Gentleman, my hon. Friend the Member for Pudsey and others can make more than adequately to the joint committee, which will be able to determine the merits of the argument prior to reaching a decision. I urge the hon. Gentleman to understand how inappropriate it would be for me to go down the route of arguing the merits or demerits of one area or another.

Smaller centres struggle to train and mentor junior surgeons, making these units less attractive to the senior surgeons of tomorrow and making it difficult to provide a safe 24-hour service. We must ensure that our surgeons and their teams are well supported. They need opportunities to develop their experience as they become increasingly expert in these intricate and complex procedures. We must ensure that all the hospitals that provide heart surgery for children can also provide care within safe medical rotas.

No parent would wish the care of their child to be entrusted to a surgeon who, though an excellent doctor, is overly tired because they have had to work around the clock without any peer support. This means that to reduce the risk of surgery in sick children and to improve their long-term outcomes, we must focus our surgical expertise in larger centres. The need has become ever more pressing with the increasing complexity of treatment.

As hon. Members will know, the national review is known as the Safe and Sustainable review. Its aim is to ensure that children’s heart services deliver the very highest standard of care. The NHS must use its skills and resources collectively to gain the best outcomes for patients. As I stated at the beginning of my speech, in line with the Government’s entire approach to the NHS, this review is both independent and clinically led. May I reassure hon. Members that the objective of the review is not to close children’s heart centres? Far from it. While surgery may cease in some centres, they will continue to provide specialist, non-interventional services for their local population.

Indeed, the review proposes to extend local care further, supported by the professional associations that support the increased clinical expertise across England. This wider support is crucial. Surgery is usually a single, short episode in what is often a lifelong relationship with specialist congenital heart services. The aim is to improve those services as a whole and to ensure that as much non-surgical care as possible is delivered as close to the child’s home as possible through the development of local congenital heart networks. These will enable children to be safely and expertly cared for nearer to home in the longer term.

Given the complexity of the issues for consideration, the NHS has held a four-month, rather than the usual three-month, consultation. Hon. Members should be reassured that the consultation process has been impressive in its scope, inclusiveness and transparency.