Children’s Cardiac Surgery (Glenfield)

Liz Kendall Excerpts

Monday 22nd October 2012 Westminster Hall

[Liz Kendall (Leicester West) (Lab)]

It is a pleasure to serve under your chairmanship, Mr Hollobone, and to follow such excellent speeches from hon. Members on both sides of the Chamber. I rise to speak both as the shadow Health Minister and as the Member of Parliament for Leicester West. My constituency is extremely fortunate to include Glenfield hospital. I welcome the members of staff who have taken time out from their busy jobs and travelled a great distance to attend the debate, and I thank them for doing so.

The future of children’s heart surgery matters greatly to the thousands of people who signed the e-petition that has made today’s debate possible. I thank the Backbench Business Committee and the hon. and learned Member for Harborough (Sir Edward Garnier) for securing the debate. The issue also matters to thousands of families right across the country, which is why my right hon. Friend the Member for Newcastle upon Tyne East (Mr Brown) and the hon. Member for Solihull (Lorely Burt) have attended this afternoon.

The issue of children’s heart surgery has needed to be resolved for many years. Following the findings of the Bristol royal infirmary inquiry 10 years ago, clinicians and professional bodies, including the Royal College of Nursing and the Royal College of Paediatrics and Child Health, have been very clear that children’s heart services need to change.

The problem is that services in England have grown up ad hoc and are too thinly spread across the country for every child to get the best possible standards of care. That is why the previous Government initiated the Safe and Sustainable review and why we continue to support the principle of fewer, more specialist centres for children’s heart surgery.

The issue is whether the Safe and Sustainable review has fully considered all the relevant clinical evidence in making its recommendations. The review has failed fully to consider the clinical implications of moving services from Glenfield, particularly the children’s ECMO service. I fear that that mistake is about to be repeated, because the new review being conducted by the Independent Reconfiguration Panel, which we learned about earlier today, will not include discussion of the former Secretary of State’s decision to sign off moving children’s ECMO services from Glenfield to Birmingham.

The two things cannot be separated and are inextricably linked: what happens to the children’s heart surgery happens to ECMO services. It is important to remember that any decisions about nationally commissioned specialist services, such as ECMO, must be signed off by the Secretary of State. I assume that the former Secretary of State made that decision only because of the recommendations of the Safe and Sustainable review, so we need to ensure that any review of those recommendations looks at both ECMO and children’s surgery.

At the risk of repeating the many eloquent speeches that we have heard, Leicester has one of the largest ECMO units in the world and it has long experience, having started in 1989. Glenfield has built up a team of more than 80 ECMO specialists. It is the only unit in the UK that can treat all age groups, which was critical during the H1N1 flu pandemic, because Leicester was able to flex its service to treat up to 10 adults simultaneously while training people working in other adult centres and co-ordinating the national service, triaging all the patients and providing the majority of the patient transport.

[David Tredinnick]

Will the hon. Lady dwell on the mobile service, because that is often a last-hope service for patients? I am informed that, without the mobile service, some patients would not survive.

[Liz Kendall]

The hon. Gentleman has predicted my next sentence. Leicester is also the only unit in England and Wales to provide a mobile ECMO service for babies and children. Once again, it is difficult, if not impossible, to separate the adult ECMO service from the children’s ECMO services. The two are linked. It is not just about equipment; it is about staff and teams working and learning together.

I do not want to denigrate any hospital’s work, but I understand that Birmingham has neither the capacity to continue the mobile ECMO service nor any plans to develop a mobile ECMO service for children. That is a serious cause for concern and something that the Independent Reconfiguration Panel must consider.

Hon. Members have already talked about the outcomes for ECMO patients at Glenfield being significantly better than elsewhere. This is not anecdotal opinion, but clinically audited, peer-reviewed evidence that has come from the very best clinical databases available in this country and internationally. Independently validated data from the UK paediatric intensive care unit database, or PICANet, show that survival rates are at least 50% higher in Leicester. That difference in mortality is maintained even when the severity of illness treated by Glenfield is taken into account.

Data from the best available international register, provided by the Extracorporeal Life Support Organisation, support the evidence of good outcomes in Leicester and show that crude mortality rates in Leicester are 19%, but nearly twice as high in other centres, at 35%. Both those independent, validated data sources show the high quality of ECMO care provided at Leicester and bring into sharp focus the risks of closing Glenfield’s children’s ECMO service.

A service cannot simply be picked up and moved to another city without losing vital skills and expertise. It takes years to build up the quality of care to the same level. Interestingly, the Safe and Sustainable review explicitly addresses the time it takes to build up the quality of care in relation to children’s heart surgery. It says that

“clinical outcomes improve with experience”,

due to factors such as team working, as well as the experience of individual clinicians. The review says that this is a

“statistically significant observation in keeping with analysis which demonstrates historically, an 8 - 10 year period of time before such a service matures to produce excellent clinical outcomes”.

If that is so in relation to children’s heart surgery services, it also pertains to children’s ECMO services.

It was unfortunate that, in his letter to the chair of the Independent Reconfiguration Panel, the Secretary of State referred simply to moving the equipment of the ECMO service. It is not just equipment; it is about staff. It is clear that the majority of staff at Glenfield will be unable to move due to family commitments. Many of the nurses there have homes, families and children, and they may be second earners. A family cannot simply be uprooted and moved. Indeed, an anonymised survey of all staff at the unit found that 80% are “not at all likely” to move to Birmingham. Significantly, none of the ECMO specialists who replied to the survey were able to consider working in Birmingham.

I am concerned that the Safe and Sustainable review has not considered the evidence about ECMO in sufficient detail. The review panel took advice about the future of ECMO services from the Advisory Group for National Specialised Services. There was no representative from any UK or international professional ECMO body on the advisory group, so it commissioned a report from ECMO experts, including Dr Kenneth Palmer, director of the ECMO unit at Karolinska university, whom several hon. Members have mentioned.

Following that report, the advisory group said that it would be “possible” to move Glenfield’s children’s ECMO service. However, the question is not whether it is possible, but whether it is desirable and whether it makes sense to move one of the best-performing services—if not the best, not just in this country but in Europe and internationally. That would not be considered in respect of children’s heart surgery services, so why consider that for ECMO?

[Keith Vaz (Leicester East) (Lab)]

Mr Hollobone, I apologise for not being able to follow the whole debate; I am participating in the debate on Hillsborough.

A number of hon. Members from all parties have praised the work of the campaigners. Our best evidence that the facilities work comes from people such as Ria Pahwa, the young girl from Rushey Mead in my constituency, who had seven operations in Glenfield and who has been an essential part of this campaign. If we are looking for evidence that the facilities need to stay in Leicestershire, the evidence is in the campaigners themselves.

[Liz Kendall]

We have all met many children, some of whom are now adults, and families who have received excellent care and support. It is important that we put their views forward strongly and that the best peer-reviewed and validated clinical evidence is considered in the new review.

As many hon. Members have said, Dr Palmer wrote to the former Secretary of State saying that he sharply opposes the use of his name for the proposed transfer of services from Leicester to Birmingham. A similar view is taken by leading international ECMO experts from the Extracorporeal Life Support Organisation, which also wrote to the former Secretary of State:

“We are united in our dismay. We are united in our dismay at the proposed move of ECMO services from the Glenfield programme in Leicester to elsewhere…The Glenfield program is clearly and objectively recognised as one of the finest ECMO programs in the world. Movement of an established unit such as Glenfield in the manner described will have profound negative consequences on the outcomes of patients needing ECMO. This move…is one clearly likely to produce results that will have a human toll in increased deaths.”

That is why the specific evidence on ECMO must be fully considered, including by the new review.

An issue raised by my hon. Friend the Member for Leicester South (Jonathan Ashworth) and several other hon. Members must also be considered by the new Independent Reconfiguration Panel: whether the assumptions about the level of cases remain based on the best available evidence. The Safe and Sustainable review looked at surgical activity data from the central cardiac audit database for 2002 to 2006—the latest evidence available at the time—which suggest that the number of cases for heart surgery would remain roughly stable over the next 20 years. New validated data, however, are now available for three more years—to 2010—showing a consistent rise in activity, suggesting that adult and paediatric activity will each increase by approximately 75 cases per year.

We also have new evidence from the Office for National Statistics about population growth, which comes from data published in October last year and indicates that there will be substantial increases in the number of nought to four-year-olds, in particular in the east midlands, the east of England and London. That causes real concern about whether Birmingham will be able to cope with all the extra cases that it will receive.

Birmingham’s case load will also increase because of the closure of Northern Ireland’s children’s heart surgery services. The Safe and Sustainable review reports an all-Ireland framework, with Northern Ireland cases going to Dublin, but that will take several years to establish and, in the meantime, a significant and increasing number of babies will continue to travel to Birmingham.

The Birmingham children’s hospital itself is concerned about whether it has the capacity to cope with all the extra cases that it will receive from a closing Glenfield, from the likely increase in surgical activity, from the increase in population, in particular among the nought to fours, and from the increase in cases coming from Northern Ireland. The hospital, I understand, has analysed the case load and produced an internal paper concluding that it would have to perform 1,000 cases a year, which is at the very limit of what the Safe and Sustainable review panel reported as a safe number for cases to be treated. I urge the IRP—rather than the Minister, if she cannot do anything—to look at whether that paper has been written and to assess all such evidence in its review.

Finally, like the previous Government, this Government rightly want changes to children’s heart surgery services so that they provide not only safe standards of care, but excellent, high-quality standards for every child in every part of the country. Just as they want that for children’s heart surgery services, they must want that for children’s ECMO services. It is not good enough to say that it is possible to move a service; we want to know whether it is desirable to move a service to get the very best outcomes.

Glenfield survival rates are 50% higher than any other unit’s in this country and internationally. It will take at least five and probably up to 10 years to redevelop the same quality of service. No one would take the best service in the country for children’s heart surgery and close and move it, so no one should do that for ECMO either.

The issue is of concern to my constituents and those of hon. Members from throughout the east midlands, and to families everywhere in the country. Such people include Clare Johnson, a constituent of my right hon. Friend the Member for Kingston upon Hull West and Hessle (Alan Johnson). She contacted my right hon. Friend to tell him about the experience of her son, Michael. Michael was born in July last year with severe meconium aspiration, which means that his lungs fill with a substance that makes it very difficult to breathe. His lungs haemorrhaged and his heart failed. The paediatric mobile ECMO service from Leicester came to collect him and transferred him to Glenfield. He was on the ECMO machine 24 hours a day for four days; when he came off it, his heart and lungs were working for themselves. Ms Johnson said:

“As soon as the team arrived to prepare him for transfer, their evident skill and professionalism gave us that very first glimmer of hope…The care we received was second to none.”

Ms Johnson also said that:

“although I am not the best person to point out facts and figures, I cannot help but pore over the evidence available and the main thing that strikes me is the ECMO survival rate”,

which is so much better. She said:

“Glenfield is the only unit to offer Mobile ECMO”—

the very service to save her son—and concludes:

“I understand that I probably sound like a Mother who is just wanting to support the unit who saved her baby’s life”

but:

“My beautiful baby boy Michael Martin Johnson died at 10.40 pm, 8 days after his birth and 3 hours after being transferred back to Hull from Leicester. He had a reaction to some medication he was given and died very suddenly and unexpectedly of a severe gastric perforation. A successful result will not bring my son back. But it WILL prevent other mothers from losing their child, as that IS the ultimate and inevitable result that stopping ECMO at Glenfield will have.”

Clare Johnson makes the case far more eloquently than I ever could. I hope that the IRP looks properly at Glenfield’s ECMO service and at the real benefits that it brings. The Minister has rightly said it is up to the IRP to consider the evidence, but it was the new Secretary of State who decided not to include ECMO as part of the review—that is what he says in his letter today—and that is a mistake, because the two services need to be looked at together. I ask the Minister to explain why the Secretary of State has explicitly excluded ECMO from the new review. That is the wrong decision and I hope that it will be changed.

[Mr Philip Hollobone (in the Chair)]

After the Minister has spoken, I will call Sir Edward Garnier to wind up the debate.

--- Later in debate ---

[Stuart Andrew]

rose—

[Liz Kendall]

rose—

[Anna Soubry]

I shall give way to my right hon. Friend the Member for Pudsey, then to the hon. Member for Leicester West.

[Anna Soubry]

I am grateful to my hon. Friend. It will be for the IRP to decide the full extent of its review of all the decisions that have been made, but the points that he has made here and in various letters will no doubt be put to it for consideration. I am told that, so far, it has not had a formal request from Leeds city council’s overview and scrutiny committee, and perhaps he can prevail on the committee to make that submission as a matter of urgency, so that we can all be absolutely sure that the review will be concluded by the end of February, and that there will be as few delays as possible.

[Liz Kendall]

The Secretary of State’s letter today says that his decision regarding removal of ECMO from Glenfield to Birmingham should not form part of the review. Is the Minister saying that the IRP will not look at the Secretary of State’s decision, but that it can look at ECMO services, although not at what he said? I am afraid that that is still unclear.

[Anna Soubry]

I am grateful for that intervention. I will explain why the Secretary of State has not been able to review the previous Secretary of State’s decision in this way. However, I am making it clear that the IRP will look at the implications of the decisions, and I will shortly turn to why the previous Secretary of State’s decision is not part of the process. I will then answer some of the specific points that have been raised by the hon. Member for Leicester South, but I want to finish dealing with the IRP.

More generally, in undertaking its review—this may assist my hon. Friend the Member for Pudsey—the IRP will interview and take evidence from a number of parties, including, but not limited to, NHS organisations, local authorities and local Members of Parliament. That will normally include evidence used in developing recommendations and proposals, taking decisions and national guidance.

I turn to the specific point about why the decision to move the children’s ECMO services over to Birmingham from Glenfield is not part of the review, or at least part of today’s decisions. Decisions about ECMO for children at Leicester being moved to Birmingham follow from the decision to transfer heart surgery to Birmingham. In other words, it was a consequence of the JCPCT’s decision. Children’s ECMO services are a nationally commissioned service, so the decision was taken by the Secretary of State, not the JCPCT. The Secretary of State made his decision based on the Advisory Group for National Specialised Services. To be clear, the JCPCT having made the decision, AGNSS then looked at the children’s ECMO services at Leicester and recommended to the Secretary of State that, in light of the JCPCT’s decision, those services should also be transferred to Birmingham.

I want to make it clear that it is unfortunate that the word “equipment” has been used. I am more than aware that the matter involves considerably more than pieces of equipment at Glenfield, and I pay full tribute to the team who work there, and indeed to the children’s heart surgery team there and to every team throughout the country. It is important to make it clear that no one is saying that a good service is not being provided, or that a service is bad or poor. The issue is all about ensuring that we get the very best service in fewer but bigger centres.