31/10/2011 Inside Out Yorkshire and Lincolnshire


31/10/2011

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

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

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

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parents who fear the changes could call their families apart.

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

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

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

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

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

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Proposals to dramatically reduce the number of children centres

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offering heart surgery have sparked controversy. Some centres like the

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

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and counter claims being made in this increasingly bitter review.

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This film does include injury -- images of surgery.

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

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

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

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

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

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Taylor is one of around 3500 children who need heart surgery

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

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

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

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

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

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

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

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

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radical overhaul which could see some surgical centres close. The

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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is looking to reorganise and improve children's hearts services

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

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

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

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

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

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and consolidate into fewer, bigger units, supported by regional

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

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

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

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

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Southampton and Leicester under threat. The Royal Brompton in

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

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

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

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

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

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

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

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campaigners and operate -- politicians embroiled in a battle

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

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

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

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

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

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

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

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

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

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

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

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

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

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of four surgeons carried out a minimum of 400 paediatric heart

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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congenital heart surgery is reasonable. I cannot say that a

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

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

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

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

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

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

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

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

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

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

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

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

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

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one had gone ahead with these recommendations, and there would

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

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

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

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

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

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

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

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

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and have enough surgeons working together to have a proper training

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

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

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

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

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number of procedures and that comes down to simple mathematics and

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

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

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

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hospitals were visited by a panel of experts which scored them

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

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

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

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

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

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

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

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released the breakdown of the schools. We cannot analyse the

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

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

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scores using the freedom of information that, but were rejected

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

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

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

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

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Health Review and scrutiny committee. -- the Overview and

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Scrutiny Committee. She believes that transparency has been a major

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

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

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

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there cannot be any real confidence in the scoring without public

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

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

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

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

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

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

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

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

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keenly aware of the factual accuracy is about the hospital have

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

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to corroborate that those factual inequities have been corroborated

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

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

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

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be released, but the joint committee primary care trusts have

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

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

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

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was put in the consultation document - a very influential for

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

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

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public domain once the committee have considered that level of

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

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

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

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

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

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

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This is called Coke location. Children with heart problems have

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

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

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

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

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has been disagreement over how double location has been defined

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

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

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

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

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

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

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

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

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

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were having surgical meetings where they could bring in teams of

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

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

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

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

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

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that is a model for the future. public consultation document

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identifies 26 services which require mandatory double location.

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Five of them are absolutely critical for children's heart

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

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

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

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

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

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

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where they are spread across several hospital sites, it also

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meets the criteria. The problem with this interpretation is that

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

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

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

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

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

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across town. John Thomson represents the British Congenital

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Cardiac Association, the largest professional group for patients

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

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

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

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

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

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

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British Congenital Cardiac Association because we believe that

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

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review teams mean the definition they have applied does meet the

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

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

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and the relationships between the clinicians. Knowing who is

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

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

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

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

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

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services will almost certainly affect some people more than others.

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

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others, it can be a lifelong relationship.

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

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

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

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

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

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

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

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

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

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

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

:20:43.:20:49.

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

:20:49.:20:54.

well-founded. A health impact assessment has clearly identified

:20:54.:20:58.

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

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

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

:21:06.:21:11.

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

:21:11.:21:14.

people from Yorkshire and the Humber was not available before the

:21:15.:21:19.

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

:21:19.:21:26.

carried out properly before the consultation begins, not to be

:21:26.:21:30.

completed after everybody - including the Overview and Scrutiny

:21:30.:21:33.

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

:21:33.:21:36.

no statutory obligation for a health impact assessment, but if

:21:36.:21:42.

one is carried out the NHS guidelines only required to be

:21:42.:21:45.

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

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

:21:49.:21:58.

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

:21:58.:22:02.

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

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

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

:22:11.:22:17.

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

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

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

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

:22:30.:22:34.

concern about how well the health impact assessment has taken account

:22:34.:22:43.

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

:22:43.:22:50.

children with congenital heart defects. Muhammad Raja's daughter

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

:22:54.:22:59.

enough. Communities have not been taken into any consideration or

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

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

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

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

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

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help the NHS over fears the sessions they had organised were

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not accessible for these communities. He feels the NHS

:23:30.:23:33.

should have done more, at an earlier stage.

:23:33.:23:37.

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

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

:23:44.:23:49.

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

:23:49.:23:52.

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

:23:52.:23:58.

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

:23:58.:24:05.

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

:24:05.:24:13.

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

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

:24:18.:24:26.

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

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

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

:24:37.:24:45.

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

:24:45.:24:48.

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

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

:24:52.:24:56.

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

:24:56.:24:59.

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

:24:59.:25:03.

on the issue. What concerns do you have about the

:25:03.:25:08.

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

:25:08.:25:13.

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

:25:13.:25:17.

recognises that geography is also incredibly important, but that we

:25:18.:25:21.

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

:25:21.:25:25.

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

:25:25.:25:30.

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

:25:30.:25:36.

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

:25:36.:25:42.

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

:25:42.:25:47.

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

:25:47.:25:51.

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

:25:51.:25:55.

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

:25:55.:25:59.

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

:25:59.:26:05.

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

:26:05.:26:09.

evidence that they have really considered another option, that can

:26:09.:26:15.

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

:26:15.:26:18.

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

:26:18.:26:23.

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

:26:23.:26:26.

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

:26:26.:26:30.

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

:26:30.:26:35.

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

:26:35.:26:39.

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

:26:39.:26:44.

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

:26:44.:26:49.

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

:26:49.:26:53.

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

:26:54.:26:59.

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

:26:59.:27:04.

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

:27:04.:27:13.

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

:27:13.:27:16.

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

:27:16.:27:21.

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

:27:21.:27:26.

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

:27:26.:27:32.

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

:27:32.:27:35.

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

:27:35.:27:39.

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

:27:39.:27:44.

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

:27:44.:27:48.

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

:27:48.:27:52.

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

:27:52.:27:56.

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

:27:56.:28:01.

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

:28:01.:28:08.

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

:28:08.:28:12.

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

:28:12.:28:22.
:28:22.:28:24.

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

:28:24.:28:31.

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

:28:31.:28:36.

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

:28:36.:28:42.

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