31/10/2011 Inside Out Yorkshire and Lincolnshire


Jamie Coulson unravels the complex and often controversial review which could lead to the closure of the Children's Heart Surgery Unit in Leeds.

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The NHS say it is about improving care for children, but not everyone


is happy. It is my own opinion, but I have a feeling that there has


been agreed determination. -- 83 determination. We speak to the


parents who fear the changes could call their families apart.


think it is going to be a nightmare, and might therefore asked tracking


backwards and forwards, spitting the family up. -- splitting the


family up. And we hear from the government's former Hearts chief,


for the reasons. People had been living on a hand-to-mouth basis in


There is nothing more emotive than the health and welfare of children.


Proposals to dramatically reduce the number of children centres


offering heart surgery have sparked controversy. Some centres like the


one here in Leeds could close. Tonight, we investigate the claims


and counter claims being made in this increasingly bitter review.


This film does include injury -- images of surgery.


It has just been, just been dreadful. We have to try and cope,


been Cope, -- be strong, but it is hard. She is a six year-old


youngster with a hole in her heart. There is no doubt, that if she is


left as she is, that her lifespan will be significantly reduced.


here I am, I am here, I have not gone anywhere. OK, it's OK. Emily


Taylor is one of around 3500 children who need heart surgery


this year. It is a desperately worrying time for families, but for


many, it could be the difference between a life and death. From the


point of view of a surgeon, this operation is very satisfying,


because there is a lot of surgery we do which is not curative. We


cannot cure the children. Where as this is a corrective operation, and


that is very satisfying. Because it is do the operation, job done,


youngster is normal. But the way children's heart surgery in England


is carried out is about to change. The NHS is proposing a boat -- a


radical overhaul which could see some surgical centres close. The


result of their review will be announced before the end of the


year, but this centre in Leeds is one of those threatened. I am here,


I have not got anywhere. You have got to take the positives, at the


moment you are just concerned that your daughter is down there, and


everything is out of your control. Well done, well done. A nice big


sleep now. For Emily, her parents and thousands in their situation,


the proposed changes could have an effect for years to come. Yet for


now, their only focus is on the next few hours.


We are gathered here today because we are victims of a gross injustice.


The injustice that our children were told -- taken from us.


review into children's heart services was set up in 2008, but it


can trace its roots back to the scandal at Bristol Royal Infirmary


in the 1990s, where but we've -- between 30 and 35 children died due


to failings in care. The subsequent inquiry made 198 recommendations.


One of them was to stipulate the minimum number of operations that


hospitals should be carrying out to ensure that surgeon's skills are


kept shop. The idea being, the more you do, the better you are. The NHS


is looking to reorganise and improve children's hearts services


across England. The NHS believes that to provide 24 hour care, 365


days a year, each hospital needs for surgeons and each site should


be performing a minimum of 400 operations per year with an optimum


or 500 ft. The aim is also to provide better care closer to


children's homes. To achieve this, the NHS needs to close some centres


and consolidate into fewer, bigger units, supported by regional


networks offering non-surgical care. There are 11 hospitals offering


children's heart surgery in England, but the NHS once that cuts to six


or seven. They have come up with four options for reconfiguration in


which five centres remain in all scenarios, leading Newcastle, Leeds,


Southampton and Leicester under threat. The Royal Brompton in


London does not appear in any of the options and Oxford ceased


operating earlier this year. It is how this option was reached and the


press is behind it which had led to an increasingly bitter dispute. --


for the process behind it. Behind me, you can see 70 parents to have


packed this meeting room here at Elland room. -- Elland Road. It is


right we have proper specialisms so we save more lives. For those


surgical centres under threat, the last year has seen clinicians,


campaigners and operate -- politicians embroiled in a battle


to save their centre. If a centre have to close in the north, it


should not be us, it needs to be Newcastle. There are serious


concerns about the process that had been raised with me by clinicians


and parents. Leeds campaigners handed in a 600,000 signature


petition to Downing Street, and the Royal Brompton Hospital in London


became the first NHS body ever to take the NHS to court. For many of


those involved, there was growing concern about how the review was


being carried out and some of the assumptions it was based on. Keep


going, that's good. Very nice. Children's heart surgery is


extremely complex and the surgeons who carried it out of among the


most skilled in their profession. Emily's procedure to correct a hole


in the hot will take four hours, but some procedures will last over


15 hours. One of the key principles underpinning the review is the idea


of four surgeons carried out a minimum of 400 paediatric heart


surgery is % per year. There is concerns from some about where this


figure has come from. There is no hard evidence that 400 cases


produces better outcomes, no hard evidence. And therefore, you know,


that is the fact. That is how it stands. The NHS review says that


Leeds carried out 316 operations in 2010, so it short of the magic


number of 400. This is the reports commissioned by the review team to


look at all available it is sure to see if there is any evidence to


support a minimum number of operations. It could not find one.


It could find some correlation between volume and outcome, but it


could not provide a cut-off point. We decided to speak to the US based


author of three of the seven report considered by the review. Dr Wilkie


is a paediatric surgeon based in Seattle. From your research, where


can you draw the line and say, this is the minimum number of cases that


a surgical centre should be dealing with? It is more complex than a cut


and dried line. In the United States, we know there are centres


that are relatively low behind who are -- lower than the line that a


performing well and vice versa. If one has to make a decision, and one


wants to base it on the data which is in existence, the number of 350


cases per year for a centre which wants to be adept in all areas of


congenital heart surgery is reasonable. I cannot say that a


number slightly above or below that is also reasonable. But based on


what we have found, that is a reasonable under. -- reasonable


number. Why is this figure important? If it was lower,


arguably more Donitz might remain viable under the proposals. -- more


units might remain viable. This is not the first time the NHS has look


at setting a minimum figure. Back in 2003, the NHS proposed three


surgeons and 300 procedures per centre, but that was rejected by


the then Health Minister. figure that was put to me of 300


cases and three surgeons in each centre had no evidence behind it.


There was no body of data that could show me that that was


actually going to be more safe than the arrangements we already had in


place. Without hard evidence, was there any way that you as a


minister could have gone ahead with those proposals? Absolutely not. If


one had gone ahead with these recommendations, and there would


have been no question, an awful lot of hostility to them with local --


there was an awful lot of hostility to them in the local area and you


can only stand up to hostility with evidence, it you can look people in


the eye and say, I am doing this because it will be better for you


and your children in the long term. Professor Sir Roger Boyle


represents the team carrying out the review into children's hot


services. He says the figure of 400 is based on expert aperient --


opinion. The basis is having enough work to keep the surgeon's skill


and have enough surgeons working together to have a proper training


environment, and the ability for surgeons to do the difficult cases


together. The problem is, it you are asking people to make big


changes, you would like it to be based on some kind of body of


evidence. We will never get the evidence, because of the small


number of procedures and that comes down to simple mathematics and


statistics. Slightly further down. Just have a look. The first stage


of the review into children's heart surgery was to assess each of the


11 centres against a set of newly developed clinical standards. A


hospitals were visited by a panel of experts which scored them


against such things as quality of care and leadership. There was a


group of people from various aspect of the health care, who came around


and presentations were given and questions asked, and they went away


and came up with a score. hospitals were scored and then a


rank into a league table. But there has been concerns about how these


schools were worked out. The NHS review team has release the details


of where the centres met on the standards, but they have not


released the breakdown of the schools. We cannot analyse the


score, on the basis, that is all we know, and number. We cannot really


do anything with that. And we are We requested a breakdown of the


scores using the freedom of information that, but were rejected


on the basis that using what they call provisional scores in the


public domain could prejudice the review. We are saying that a


further option should be included, which does include Leeds but also


actually includes eight centres. This counsellor is the chair of the


Health Review and scrutiny committee. -- the Overview and


Scrutiny Committee. She believes that transparency has been a major


issue. For the fact that neither the hospitals nor the statutory


bodies to scrutinise this process, in theory, get to see the breakdown


of scores, it is unacceptable. Complete the unacceptable, because


there cannot be any real confidence in the scoring without public


scrutiny. The scoring has had an effect. And the scoring has been


brought into play, into the recommendations. There is no doubt


that, from the point of view of this review, and people's


perceptions, the scoring has been important and this centre has been


disadvantaged. There has also been concern over the accuracy of the


scoring. In Leeds, one example is where it says that there is not a


dedicated transition nurse to help children to adult services. But the


true say that is not correct and that one does exist. We are very


keenly aware of the factual accuracy is about the hospital have


told us exist. -- factual inaccuracies. We have not been able


to corroborate that those factual inequities have been corroborated


anywhere. -- have been addressed. There is so much emphasis placed on


one set of data, and we could not get access to it. Why has the


breakdown of those scores not been released? I do not know. They will


be released, but the joint committee primary care trusts have


not seen that breakdown. The review team also say suggestions of


factual inaccuracies are without merit, and there is no need to


readers of the score for Leeds. This created a league table that


was put in the consultation document - a very influential for


the members of public who see it. Surely that should be open to some


scrutiny of how those scores were given. It will be put into the


public domain once the committee have considered that level of


detail. Will that not be too late? I think it is only one factor that


is being considered here, but it is an important one because it is a


measure of quality that goes beyond just looking at survival rates.


When children have a congenital heart disorder, it is likely they


may have more than one thing wrong with them. In these circumstances,


it is important that they have ready access to other medical care.


This is called Coke location. Children with heart problems have


complicated problems, so it is rare they have a hard problem that is


isolated. If the additional problems become an issue, it is


very, very important they have access to experts in that area to


advise you and help get the best outcome for the patient. But there


has been disagreement over how double location has been defined


for this review. We have been told that 10 years ago, they did not


even treat children like Lyle. Cookward is two years old and was


born with multiple complications to his heart and lungs. He has had 11


operations to date and while he is much stronger now, in the early


days things were critical. He was so, so poorly about. That had he


been in a hospital but did not have those facilities on site, he would


not have been well enough to move to have those procedures done. The


fact that he was going down a corridor to theatre, not being


transferred across the city, meant those procedures could happen. They


were having surgical meetings where they could bring in teams of


surgical professionals - not just cardiac experts, and they could all


have a discussion about what was going on. Lyle is a perfect example


of that stubble location. All services under one roof. -- double


location. The problems that were not related to his heart that he


had, we could get the doctors at short notice around the clock, and


that is a model for the future. public consultation document


identifies 26 services which require mandatory double location.


Five of them are absolutely critical for children's heart


surgery. When they say double location, what exactly do they


mean? For the purposes of this review, they are using a definition


from 2008. It says that services should be housed on the same


hospital site, or in a neighbouring hospital as a on the same site. So,


a hospital such as Leeds General Infirmary, which has all the


services under one roof comes under this category. But in Newcastle,


where they are spread across several hospital sites, it also


meets the criteria. The problem with this interpretation is that


the man who wrote the definition has raised questions about how it


has been applied. In a letter to the paediatric intensive care


Society, published on the safe and sustainable website, he said it


would not apply to services being available in the same city. It does


not equate to a visiting surgical team being a nominal 50 minutes


across town. John Thomson represents the British Congenital


Cardiac Association, the largest professional group for patients


with the devil heart disease. -- congenital heart disease.


believe that it means having their services available under one roof,


ideally, to provide input to those patients when they are needed. The


S&S definition has been a little bit more loose and defines it as


being not necessarily on one side, so potentially in a different


hospital. Potentially on the other side of a large city. That concerns


British Congenital Cardiac Association because we believe that


it is so important for the outcomes of these patients do. The NHS


review teams mean the definition they have applied does meet the


criteria. Buildings never saved anyone's life. It is the conditions


that are important and the bash at the conditions that are important


and the relationships between the clinicians. Knowing who is


responsible for what, so that they can get into complex situations.


you are happy that if the services in the future are said across


different sides in the City, that is OK? As long as they are


relatively adjacent and you don't have to queue in traffic for half


an hour to get across. The plans to reconfigure children's heart


services will almost certainly affect some people more than others.


The majority of patients will only ever need surgery once but for


others, it can be a lifelong relationship.


She was discharged from hospital when she was born as normal, but


three weeks later she started having some seizures. When we took


her into hospital, that is when they did the analysis and we went


to the Leeds General Infirmary and found out she had a hard concision


-- condition. So our Hussain is six years old and has problems with a


heart from birth. -- Sara. He it news to Newcastle, that is two


hours away for us and it would pretty much mean that one parent


would be with Sara and the other would be with the other children. I


think it will be a nightmare. It will be a nightmare for us,


tracking backwards and forwards, splitting the family up. I don't


want to think about it, to be honest. It is already a stressful


time anyway and this just adds to the stress. The Hussains' fears are


well-founded. A health impact assessment has clearly identified


that if the surgical centre in Leeds closes, the highest number of


people will suffer increased travel times. But here is the problem -


some people claim the health impact assessment has been carried out too


late. The precise details of how troubled times might increase for


people from Yorkshire and the Humber was not available before the


public consultation came to an end. You would expect a HIA to be


carried out properly before the consultation begins, not to be


completed after everybody - including the Overview and Scrutiny


Committee - have had a chance to have a say in the process. There is


no statutory obligation for a health impact assessment, but if


one is carried out the NHS guidelines only required to be


carried out in sufficient time for the findings to be factored in. If


you are going to carry out a health impact assessment, wouldn't it be


better to have it at a more advanced age -- advanced stage.


we need to make sure it is part of the process but not one that


preamps what you finally decide. So that when you actually come to the


point of implementation, you have got the issues that have arisen


clearly in mind to make sure plans address those issues. But you are


happy it should not have been earlier? I am happy, yes. Define a


health impact assessment has yet to be published -- the final.


Additional work is being carried out on travel patterns. There is


concern about how well the health impact assessment has taken account


of ethnic minority families, who are twice as likely to have


children with congenital heart defects. Muhammad Raja's daughter


Palak has a heart condition and he feels the service has not been good


enough. Communities have not been taken into any consideration or


into any confidence. The S&S review team say they contacted nearly 2000


organisations and a range 20 focus groups across England and Wales, to


here specifically from black and minority ethnic groups. But we have


spoken to the man who organised three of the five focus groups held


in Yorkshire. David Odunukwe from the Leeds BME Network stepped in to


help the NHS over fears the sessions they had organised were


not accessible for these communities. He feels the NHS


should have done more, at an earlier stage.


Overall, how well would you say minority groups have been consulted,


even including the work by you have carried out? Not very well. We have


managed to tick the boxes, so that it is noted in London at the NHS


offices, and in Parliament, that consultation has been done with


more than two or three groups. When we are able to contact people at a


moderate level, at a late stage, we would have been able to transform


that site of the relationship. We would have been able to look at he


was dealt with and who had a say. In any consultation, you would want


everybody to have the opportunity to work in a democratic fashion. So


I don't think it was box-ticking - I think it was an issue raised and


we responded to it. The review team also point out that nearly 20% of


the 75,000 responses to the public consultation came from BME groups.


The I want to highlight why and what my concerns are. It is about


the review and not just about one sentence. One of those who has been


most vocal about the proposed changes to children's heart surgery


is Stuart Andrew, the MP for Pudsey, who instigated a backbench debate


on the issue. What concerns do you have about the


way this review has been carried out? I think that it has not been


transparent enough. I think we want a level playing field that


recognises that geography is also incredibly important, but that we


do have a process that brings about the best children's heart surgery


that we can have in this country. Do you accept that there does need


to be a changed? Absolutely. I think we'd have to be sure that we


have really safe units, but let's not make a mistake in the process.


A we are able to close this directly. Just a couple of minutes,


probably. For Emily Taylor, the operation to fix the hole in her


heart is over. It brings to an end what has been the most testing time


of her life so far. Hers is just one story among thousands of


children whose lives are changed each year. They are the reason that


this review is being so keenly watched. I want to see real


evidence that they have really considered another option, that can


potentially help us keep it in Leeds. If we lose it, I think it


will be a serious blow for many patients that are going to needed.


I have had people banging on my door every month, asking why we


haven't sorted out children's heart surgery. They say it is ridiculous


to have this large number of centres to bring such a small


number of procedures. Shame on you for not doing something about it


before now, they say. They best outcome is that this centre stays


open. I am absolutely clear about that. It not for me personally,


because in the future, I won't be here. But for the community of


Yorkshire and Humber, I think it is absolutely important that this unit


stays open. It has been three weeks since Emily came out of hospital,


and she is feeling much better. was really very happy when Maya


operation was done. -- my operation. I could go home and have more fun.


She went from intensive care to a high dependency unit. She was there


for one night and after that she went into the ward, and she was in


the ward for a couple of days. Because she did so well and


recovered so quickly, they sent us home. You feel fantastic. From the


emotions you have gone through before, it is just wonderful to


think that it was found and that she has been treated. Now we can


just get on with everything and not worry about it anymore. And get on


with our lives will stop the review into children's heart services has


been one of the biggest ever carried out by the NHS. The review


team say no decisions have yet been made, and the results should be


announced before the end of the year. I will be a bit more stronger


when I get older and don't be poorly. And then I will get a


really, really happy when I am older because it is all over and


done with. I can do anything now. I If you want to contact us about


tonight's story, you can do so on Facebook or Twitter. That's it from


us in Leeds. Make sure you joined us for next week's programme.


In a special programme, Jamie Coulson follows six-year-old Emily Taylor through her treatment at the Children's Heart Surgery Unit in Leeds. Meanwhile, he also tries to unravel the complex and often controversial review which could lead to the Leeds unit being closed.

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