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In defence of change: A response to guest blog attacking review of children’s heart surgery services

Posted on 6 September 2012 | 6:09am

On Sunday I posted this guest blog from Kathryn Batten on the review of children’s heart services. As a result, some of the local papers in the areas covered by the review have reported that I was ‘stepping into the campaign’. In fact, as Kathryn knows, I have always been clear that on a subject as emotive and complex as this, I simply do not know enough about the issue to state one way or the other what I definitively think.

And as I said on Sunday, I know from my time in Downing Street that it is easy to generate protest, less easy to make difficult decisions for the long-term. So I posted Kathryn’s blog because it was measured, heartfelt and it was a new platform for her to make her case.

But I do also know there are always at least two sides to a story, and I heard the other side from a good friend of mine, Sir Ian Kennedy, the man currently with the unenviable task of sorting out MPs’ pay and rations, but who was also the chairman of the public inquiry into the deaths of tiny children with heart conditions in Bristol. He is someone I know well, and whose intellect and fairness I respect, so when he said to me he was very that vital changes to children’s heart services are long overdue, I offered this space to him, or to someone who would put the case for reform.

Ian explained that the NHS has involved doctors, nurses, young people and parents in the development of proposals that he believes will see care expanded locally and surgery pooled in fewer larger centres. A public consultation was held last year , and 75,000 views were submitted, making it the largest consultation in NHS history.

So today’s guest blog is  from Sir Roger Boyle, former National Director for Heart Disease and Stroke.

Every day across the country the NHS is saving children’s lives. Advances in the treatment of congenital heart disease mean that many young babies with this complex condition who would not have survived treatment in the past are now surviving. In fact most are going on to school, making friends and living into adulthood. But, with change, the expert surgeons and their teams can save even more lives and prevent some of the life-long conditions, such as brain damage, that some children face after surgery.

The decision on the future of children’s heart services is long overdue and has been welcomed by clinicians, professional associations and national charities for the improvements it will bring for children with congenital heart disease. Parents, clinicians and commissioners have persistently called for reform since the tragic events at Bristol between 1984 and 1995, where too many babies needlessly lost their lives.

Sir Ian Kennedy, the Chair of the Bristol public inquiry, introduced his report in 2001 with the words:

It would be reassuring to believe that it could not happen again. We cannot give that      reassurance. Unless lessons are learned, it certainly could happen again, if not in the        area of paediatric cardiac surgery, then in some other area of care”.

The decision made in July 2012 will ensure that such events do not happen again.

Landmark decision

The decision made by the Joint Committee of PCTs in England (JCPCT) is a milestone in the provision of specialist paediatric care and will provide a sustainable, world-class service for children with heart disease. The JCPCT’s decision was welcomed by a number of Royal Colleges of medicine, whose presidents wrote that the decision will “improve clinical outcomes and help to save more children’s lives in the future”. In today’s Guardian Dr Hilary Cass, President of the Royal College of Paediatrics and Child Health, describes the Safe and Sustainable review as “one specialist outcome of a broader problem, which is that we cannot sustain services safely on the 218 inpatient units.  That’s too many and it’s spread too thin…you are not getting the quality of care in every one of those units that we would like children to be receiving.”

Similar change – for the same reasons – has already happened elsewhere: in Germany, Sweden, Canada and Australia to name a few. Closer to home, heart surgery for children has ceased in Cardiff and Edinburgh due to sustainability concerns and in July the child heart service in Belfast was assessed as not sustainable by a panel of experts led by Sir Ian.

In the future vital care will be provided closer to children’s homes; no longer will families have to travel long distances for routine check-ups and diagnostic care because services will be expanded locally.

Highly specialist surgical care involves surgeons operating on hearts that are often no bigger than a walnut and in future the NHS will expand some hospitals so that surgical expertise can be pooled in fewer larger centres. This will guarantee 24/7 surgical care at seven specialist centres in England. Surgeons will operate on more children to ensure they maintain their skills and continue to advance new techniques and breakthroughs in the treatment of heart disease.

Listening to the public’s priorities

Clinical experts in the care of children with congenital heart disease contributed heavily to the process of developing clinical standards and clinical models of care. The eventual decision followed a comprehensive and robust process of engagement and consultation with parents, patients, NHS staff and professional associations. There were 75,000 responses to the public consultation, making it the biggest in NHS history. The JCPCT considered these views and a wide range of clinical evidence before making its decision. This included travel times and emergency retrieval, optimum procedure numbers for each surgical team, self-assessments from each specialist centre and changes to the provision of nationally commissioned services. The only nationally commissioned service to relocate is ECMO (extracorporeal membrane oxygenation), which will be provided at Birmingham Children’s Hospital instead of Glenfield Hospital in Leicester.

Over recent years the children’s ECMO service has expanded across the country and ECMO expertise is now more widely available. Last winter Birmingham Children’s Hospital was ready to provide ECMO care along with seven other hospitals (children and adults). They will want to work with clinicians currently based at Leicester to provide the service to the highest possible standard and the JCPCT has acknowledged that it is a priority to retain the considerable expertise that resides in the ECMO team at Leicester.

Other key considerations

Travel times and emergency retrieval – the time it takes a specialist medical team to reach a child – were carefully considered by the JCPCT, particularly following concerns raised during public consultation. The option chosen by the JCPCT best meets the retrieval standards set by the Paediatric Intensive Care Society in terms of travel times. The optimal minimum figure of 500 procedures to be performed by each surgical team is based on a combination of the need to ensure a sufficient volume of paediatric surgery for four full-time consultant congenital cardiac surgeons in a unit, the need for 24/7 cover and the available evidence and professional consensus. This figure was developed and endorsed by the professional associations and is considered one of the core standards for improving care in the future.

Building a world-class service

The initial stages of implementing these improvements are underway and the NHS needs to prepare now to ensure that the new children’s congenital heart networks can be established. This initial implementation work is vital to ensure the NHS is ready to begin introducing permanent changes next year, such as hospital extensions and improvements to family accommodation. The views of NHS organisations, national parent bodies and professional associations will continue to be heard throughout this process.

Importantly, the networks will provide services across the various geographies so that most families will receive their follow-up and supervision at their local hospital and commonly by the team that sees them now without the need to travel 80 miles up the road.

As former National Director for Heart Disease and Stroke I have long demanded improvements to the service that will provide children with access to the best-possible care, both at Specialist Surgical Centres and more locally. Other areas of the NHS have seen similar service developments – including centralising specialist expertise – which have seen eye-catching results. Following the re-organisation of stroke services, for example, NHS London estimates that up to 400 lives will be saved each year across the capital.

There was a strong belief among respondents to consultation that quality should be the deciding factor when planning future services. Support for ensuring excellent care was significant: 93% of individuals and 94% of organisations who responded support these standards. I have supported this process since the very start and believe that Safe and Sustainable will result in children with congenital heart disease receiving first-class care in the future. I recognise that people have shown a huge loyalty for their local surgical centre but pooling surgical expertise means the clinical community can work together, develop new techniques and deliver improved care to keep more children with complex heart conditions alive.  There is total agreement from clinicians, medical Royal Colleges and patient organisations that fewer, larger centres will result in better outcomes for children. Patients, parents and NHS staff have been waiting too long for change.

The decision made on 4 July should be applauded.

  • Red Robin

    I would like to make 2 points – firstly I am unsure as to whether Roger Boyle has read the initial blog, as he is discussing the need for change, same as the initial blog. However I also am concerned that it is Roger Boyle who has written the response blog, as he made it clear from the outset that he was favouring certain units above others.

    Not really going to give a balanced view!

  • A biased response as expected from Roger Boyle. This man openly supported one of the units during the consultation despite the fact he was meant to be independent. Further, he also advised that he would play no part in the final decision as he was to retire during 2011. On 4th of July he was instrumental in the process so for a second time mislead the public. What the above blog does not mention is that 60% of the biggest consultation was ignored, and the fact that with regards to ECMO the panel ignored the most experienced advice. We knew this is what you wanted Roger, you have made this clear for many years, but if this cost lives I will be one of the people counting them and reminding you

  • anon

    I understand that difficult decisions on centralising specialist services have to be made. I also abhor the parochial views expressed by at least one institution affected that the interests of the instituion outweigh the arguments around clinical safety. But the practical problem is that management of the change appears not to have been thought through at all. How, for example, can the aspiration to relocate ECMO from Leicester to Birmingham while aiming to “retain the considerable expertise that resides in the ECMO team at Leicester” work? Are you expecting staff from Leicester to commute daily to Birmingham because I simply don’t believe that will happen in practice – it’s a 100 miles round trip. It would be far more honest to say that you are closing a unit and redeploying (or making redundant) the staff.

  • Heart parents want the very best care for our children. We are often quoted as saying ‘ we would travel anywhere’ for the best services and we would – but we shouldn’t have to.
    Heart parents are emotional – of course we are, these are our children who have fought for their lives.
    We have a loyalty to our units but that loyalty fades in comparison to the loyalty we have to our children and to what is best for them.
    We are also informed and absolutely do understand the ethos behind this review. We support the basis of this and had it been carried out with transparency, honesty and been based on factual evidence then we would support the outcome.
    However, it became clear very early on that the review serves a purpose to the decison-makers only and not heart children.

    This decision has been made behind closed doors, with manipulation of facts and figures. The three units marked for closure had no representation on on the panel – all the remaining ‘saved’ units did. The original scoring of each unit – of which ALL were deemed ‘safe’ – were hidden until July 2012. The figures were flawed, with serious manipulations to bring lower-scoring units up to the top of the league table, and push the higher ‘unwanted’ units to the bottom. An extra catagory was introduced much later in the process to give extra scorings which could never be quantified or substantiated in any way – all to get the desired outcome.

    Advice taken from the supposed ‘leading’ children’s heart charity was undermined from the outset – with the charity CEO publicly stating which units she wanted to remain open. Removing all pretence at impartiality, yet this person was disgracefully allowed to remain on the panel.
    Public opion was only taken into account where it suited the decision-makers. 22,000 text responses and over 30,000 paper responses were counted individually, yet a petition of 600,000 signatures was counted as 1 single response. Just 1.
    The final decision ignores the Safe & Sustainable defined requirements of co-location of services, density of population and apparently excellent travel links for road and rail are actually not that important after all. This decision impacts negatively to more families for travelling than any other option and adversly affects more PICU services than any other options. This decision defies all of the key requirements of a Safe & Sustainable service.
    The JCPCT also mistakenly believes that parents can be ‘properly-managed’ into going to certain units.
    This outcome suggests that my child is supposed to travel 129 miles to a new unit, instead of 59 miles to a closer unit or the 27 miles to our existing unit. All for the fact the further unit cannot meet its quota of 400 surgeries a year without the families travelling from miles away.
    Clearly not safe or sustainable.
    This decision means that more families will travel further at the most stressful & terrifying times of their lives. Families will be disjointed as partners and siblings will be too far to visit. Grandparent and other family support will vanish. The costs will be phenomenal. Having a child in hospital brings more expense than you can imagine and combined with loss of income whilst you are there brings further pressure on the family who are already under huge pressure.
    Serious consideration needs to be given to the families who will exercise their right to choose which unit they will attend with their child. Despite independant evidence being provided at the public meeting which showed patient flows will not be as the JCPCT dictates – reducing numbers so vitally needed for a unit and seriously increasing the demand at two other units.This evidence was played-down and then dismissed by the panel. Again, the evidence is not in line with the key requirements of a Safe & Sustainable service.

    IF the scorings were publicly issued at the outset and were accurate and fair,
    IF all units were represented on the panel,
    IF parents genuine concerns were given due credit,
    IF all biased parties were removed fom the review,
    IF honesty, transparency and equal measures were employed from the outset –
    IF the panel actually stayed loyal to their set criteria -instead of manipluating words and figures to ‘fit’ their choice

    – then the decision would be supported and heart parents would be eager to implement these changes as soon as possible. But this hasn’t happened. I could go on- there are so many areas in which this review is so fundamentally inconsistant, biased, flawed…sickeningly wrong.
    The decision made on 4th July should absolutely not be applauded.
    It is a shameful result obtained by the betrayal of the very children it professes to protect and it should be wholeheartedly condemned .

  • curious as to why my comments have been removed ??

  • Red Robin

    After reading this, I am left unsure as to whether Prof Boyle has read the initial blog. They both appear to agree with the need for change, and yet none of the questions raised have actually been responded to.
    I’m also left in doubt as to the “independence” of Prof Boyle, in relation to which units he supported, prior to the review!

  • Anonymous

    Why doesn’t GOSH move out of London, say just outside the M25? Going to central London is like organising a trip abroad for us lot in the sticks. Anyway, you would think hospitals should be in some sort of countryside, better air quality and all that.
    Sometimes there is too much irrational sentiment with these sort of things, blinding common sense.

  • SJones

    Oh, no it should not be applauded…

  • Anonymous

    Disqus has just had an upgrade locally here, so don’t worry, teething troubles as usual, when they fanny around and do an upgrade on a deadline when snags are still included. Just post again is my advice.
    Hope this helps. (HTH, and all that online bollox!)

  • Anonymous

    …furthermore, Dave Cameron is looking to invest in building wotsits, so GOSH new hospital would be a vote winner Dave?
    Why in hell am I giving advice to Dave to help him win the next GE, I am suddenly asking myself? I must be mad!

    ACH!, might as well post more Sue White the hospital admin wotsit here from The Green Wing, for amusement factor, to lift things,

    But never met a blonde Doc that looked like that, though. MEEEOWW!

  • Anonymous

    it’s happened again, no clickable pic,

    Any better?

    Yes, good, see what I did wrong now – clicked reply instead of edit before, then clicked edit. Buggering arse-thought upgrades!

  • Anonymous

    I salute you today Mr Campbell. Having the honesty to admit you are not an expert on the issue, and allowing intelligent people from both sides to make their case.

  • Red Robin

    Just thought I’d have a further read around. Quite interested in Roger Boyle’s example of stroke. Turns out the units that were centralised in that example were small and had objectively poorer results than the other units. As this in not the case in this instance (all units had good outcomes) the comparison is basically invalid. Feeling rather frustrated. Not sure this blog has provided any “facts” purely assumptions.

  • Anonymous

    Health aside (!), rugger, and Glasgie, Scarlets are up there playing tomorrow night, will watch it live online thanks to BBC Alba live channel,
    In Scottish Gaelic, but I am getting to understand it more. At least us Celts can say CH as a letter, ey Alastair?
    Snedds posted his annual best tries vid a month or so back for the Scarlets, which he has done for a few seasons now – here is the 2011/2012 season,

    As I have already pointed out, the Scarlets is seriously looking interesting this season, sportingly – they have just signed a six foot seven almost nineteen stone lock South African forward, yesterday, so it could become even more interesting,

    Thee tidy excellent Saffa lads they have signed, that will do well – Earle for instance was brilliant last weekend.

    That is three Saffers now with the Scarlets – excellent blokes, these three are tidy fellas.

  • Anonymous

    We can only guess what has gone on here, and pick what bones we are fed, but it seems to me some sort of contract killing, and yes, also seems to be connected to the middle-east.
    What are, ahem!, Israelis up to these days, their secret service? Or is it internal Islam type of thing? But looks like an innocent cyclist has been terminated, so whatever has gone on here, they have really fucked up bigtime. But being a bystander, can’t be any secret service, they couldn’t give two shits about that.
    A case of watch and shoot for the rest of us, it seems, again. Wait for the documentary and book it looks, and even film, in French.

  • Anonymous

    Alastair, this is interesting,
    Perhaps my Marvin the Paranoid Android from Douglas Adams vid recently could have swayed it, a little. Used to programme a lot a few years ago at home, machine language, basic, and higher languages. Did a lottery programme in Pascal when it started, and won £180 quid from it within a month, before I lost interest. Did a programme for space invaders from very basic assembly – it took me weeks to type in all the parameters and codes, but it worked brilliantly, and I added excellent bells and whistles, like a Thatcher coming across the top every now and again for zillion points….
    More Marvin here,

    oh gawd – he has got it bad, hasn’t he?

  • Gilliebc

    Regarding the new Disqus ‘upgrade’ I see we’ve now got a ‘/’ and a ‘*’ where the up and down arrows were! The * being where the downward or dislike arrow was previously.
    Does anyone now know which symbol is a ‘like’ and vice versa? Whilst ‘experimenting’ I see the ‘/’ turns blue and the ‘*’ turns red. Which I guess means blue= like and red= dislike. It could be a bit confusing for newbies or infrequent visitors in that an * could be mistaken for a star of approval. It was much simpler when we just had a ‘like’ facility.

  • Anonymous

    Alastair, here is George Earle speaking a short while ago, and what I have seen and sensed from him, he is a right intelligent fella, as I suspected. Play for Wales in three years George? Carry on, you have my blessing,

  • Richard

    Al lost £30 on the Heath yesterday whilst out jogging and is obviously having to make savage cuts in his IT budget as a result. There will be many changes obviously!

  • Oh thank you, that does help! I’m trying to delete some now and it wont let me do that either! eeek!

  • Gareth Jones

    In summary, we all want clinically safe surgery for our children but we also want decisions to be made in a completely independent and unbiased way.

  • Michele

    There’s too much smudging of detail in the input from people that are directly and emotionally involved in this.

    The 2007 investigation recommended keeping local services for more-routine heart surgery for children and centralising services for the most complicated, severe congenital cases.

    Given that family accommodation is to be provided at the large new units I would imagine that that is still the case, so could someone that knows please advise whether whole local depts are being closed (as keeps being posted) or are actually being freed from the more difficult cases that take much more intensive care and keep carers from other patients whose needs are still important but less urgent.

    I hope the latter is the case, especially with respect to the OP article’s first paragraph.

  • Sarah Dodds

    This has nothing to do with the post, but so desperately needs sharing.
    Welcome to Cameron’s Britain.

  • Anonymous

    Alastair, bizarre, some could say, event is taking place in West Wales over the weekend – a Meccico Acapulco-type diving event, in the World Champs of it. Being held in an old turn of nineteenth century slate quarry, right on the Cardigan Bay coastline.×345/image-15-for-red-bull-cliff-diving-world-series-in-abereiddy-pembrokeshire-gallery-752028178.jpg

    Different, you could say, link here,

    And they have the weather for it, it is a brilliant blue-skied day here in West Wales, for a change. The Gods have blessed it, and all that.

  • Gilliebc

    Yes, you’re quite right. We no longer seem to have an ‘edit’ facility now! This new ‘upgrade’ is awful imo. The problem is as I see it, is that most socialists are far too accepting of any change that is imposed upon them! In their naivety they genuinely believe that ‘Big Brother’ knows what’s best for them. I can’t imagine that contributors to other Disqus powered comment sites, e.g. Telegraph blogs would quietly accept changes of the sort we have seen here recently.

  • Dr Pete

    ‘Listening to the public’s priorities’ says Sir Roger. There were 51,453 responses to the public consultation. Over half of them (52%) strongly opposed the option the administrators have picked, and only a third of them (33%) supported it. In what way is that ‘listening to the publics priorities’?
    ‘ Last winter Birmingham Children’s Hospital was ready to provide ECMO care’ says Sir R. They didn’t actually do any, though, did they. But I guess Sir R considers that the risk is worth taking, closing a proven centre in order to open another one elsewhere. A bit like operating on a child in a new centre even though there’s a proven one a few miles up the M5 – Sound familiar? And look where that got us.
    He also omits to tell you that the results for the Leicester ECMO centre are apparently 20% better than other centres in the UK.
    ‘There is total agreement from clinicians, medical Royal Colleges and patient organisations’ says Sir R. Which is why the Association of Cardiothoracic Anaesthetists expressed severe reservations, stating ‘: ‘…the need for reduction to six or seven centres is unproven.’ and The Association of Paediatric Anaesthetists of Great Britain and Ireland expressed concerns over the loss of skills and expertise. Indeed, of the national professional bodies whose responses are on Sir Rs web site, only one supports the administrators chosen outcome, the rest expressing no preference.
    ‘The optimal minimum figure of 500 procedures … is based on…. the available evidence’ says Sir R. In fact the independent literature review commissioned by the administrators says ‘the papers reviewed do not provide sufficient evidence to make firm recommendations regarding the cut off point for minimum volume of activity for paediatric cardiac procedures overall or for specific high complexity procedures at either institutional or surgeon level’. Sir R choses to ignore this presumably because it doesn’t fit with his preconceptions.
    They misquote or rather selectively quote other studies – indeed one of the studies quoted by the administrators in their glossy documents actually says (if you read it) ‘As a discriminator of mortality, volume alone was only marginally better than a coin flip’. Don’t get me wrong – I think there is a relationship between volume and outcome, but I think that there is not a cut off at 400, and it certainly isn’t as simple or clear cut as Sir R suggests.
    One would imagine that the time it takes to get expert medical care to sick infants would be important, and Sir R says ‘The option chosen by the JCPCT best meets the retrieval standards set by the Paediatric Intensive Care Society in terms of travel times’. This is simply not true. Two other options also met these standards.
    There are many good aspects of the process, including the quality standards that all units should adhere to. It saddens me greatly that the process has been debased by what appear to be biased and inaccurate responses such as those expressed above by Sir R.
    PS, I’m also biased, as I work in a heart centre.

  • Dr Pete

    Sorry, to clarify:
    Local depts (Leeds, Brompton, Oxford and Leicester) will stop doing all surgery and invasive work. Difficult cases are not being centralised – the seven units left will be expected to take on all cases in their area, irrespective of complexity. There are no ‘large new units’. The work from the units that are ‘not being designated’ (Leeds, Brompton, Oxford and Leicester) will just be taken up by the remaining units.

  • Anonymous

    Downthumbs, as they do. Life’s too short. Must have been one of those sharpend health admin cuckoos that downthumbed that vid, no doubt, or Jeremy, AHEM!, Hunt, or one of his “bitches”! : ).

  • Anonymous

    Beeb Wales, Alastair, has just posted some brilliant pics of this diving event. Jump off a board at eighty feet? Can I think about it?


  • There will still be childrens heart services in say Leeds but surgery will take place at a centre of excellence such as Liverpool, Freeman or wherever… no units are closing this is a fact that seems to be ignored by certain campaigners who are against the Safe & Sustainable decision…..

  • Red Robin

    Hi Michele
    The recommendations are now to close all surgery at the de commissioned units, not just the more complicated. Basically there will be cardiology units remaining at the other sites (in theory anyway) with the intention of meaning that patients dont have to travel for check ups etc. This is another problem which has been given much consideration from a theoretical perspective, but the problem is that it is not just the patients and families who are human and thus will not always react in a “theoretical” manner. How are you going to keep cardiologists in a unit where they have no career prospects, and stop them moving to the large units where they will be able to see the complicated patients, perform interventions etc. The other thing to consider is this review comes with no money, therefore this accommodation has to be paid for somehow, at the same time budgets are being cut and savings sought. All the more reason for these parents to be concerned – especially when reasonable questions such as these remain unanswered.

  • Anonymous

    A one-nil type result win away to Glasgie.
    But the irish reffing was totally bizarre, as usual – what fecking planet their rugger reffing refs are on, I am constantly puzzled by. As if they in the funny hand shake club over the water have picked on us Welsh, which I suppose is an easy target. Fecking coward twats!

  • Anonymous

    She’s a kiwi you know, spent time in Wales,

    and yes, clicked the wrong fucking button again. Wish you Belfast shits would do so as well.

  • Anonymous

    Bugger it, a song for the irish, who are obviously incapable in sorting their shit out themselves, Hayley Westenra, in Belfast,

  • Kathryn Batten

    As the guest blogger who started this off I am hopeful that my reply will be posted clearly for people to read, but in the meantime please have a look at it on:

  • Anonymous

    With this Alastair: –
    since I live about half a mile from a major exchange in west wales, 01269 code, and since several people up my road applied for fibre optic, since they are homeworkers/run small companies/etc., I enjoy 100Mbps broadband. Click something, and ping!, it appears. Had to buy a bells and whistles router though, so I can whizz.
    I am in the fast lane, online, and am right in the sticks. That sliced bacon factory nearby might have also something to do with it as well, though.

  • Anonymous

    Vid from last nights Beeb Wales News has been posted,

    Better than the photos, obviously.

  • Kathryn Batten

    I am extremely grateful to Alistair
    Campbell for offering me this platform to generate a discussion. It is
    interesting to read the response, as both statements, from Sir Ian Kennedy and
    Prof Boyle, are defending the need for change, something I too understand and
    support. My blog is NOT a criticism of
    the review aims, but an attempt to raise awareness of the difficulties in
    getting issues such as this, into the public domain, where questions and
    concerns can be addressed. The clinical concerns about the outcome should be
    raised in an appropriate forum, and I understand that yesterday the Overview
    and Scrutiny Committee in Leicestershire and Rutland followed the example of
    Lincoln OSC and referred the matter back to the new Minister of State for

    Having read the response from Prof
    Boyle, and without getting too bogged down in the clinical aspects of the
    review, I would like to raise a couple of points.

    Firstly I find it disconcerting that
    there appears to have been a large element of “picking and choosing” which
    aspects of the public consultation to listen to. The case for “quality” as a measure
    of determining which centres to commission is fully reliant on the public
    consultation results. And yet 60% of the respondents supported Option A – a
    configuration of Newcastle, Liverpool, Leicester, Birmingham, Bristol and 2
    London units, with the remaining 40% divided between 3 other options. Why then
    was this aspect not taken into consideration as option B was finally presented
    as the option of choice?

    Secondly I remain confused by the
    apparent contradiction of the case for quality and the closure of
    world-renowned centres. The Brompton has a history of research and development
    second to none, while Glenfield offers one of the best ECMO units in the world.
    According to the case presented at the OSC, the mortality rate for patients
    requiring respiratory ECMO is 20% lower at Glenfield than any other unit in the
    country, and comparable to the lowest in the world. In an open letter to Andrew Lansley, from the
    international ECMO community, they warn that closure of Glenfield will lead to patient
    deaths. The doctors, from North America, Asia, Australia and Europe, led by
    James Fortenberry, chairman of the international Ecmo Leadership Council, said:
    “We are united in our dismay at the proposed move of ECMO services from
    Glenfield. While not citizens of the UK, we are citizens of the greater ECMO
    community and we offer our experienced observation. Movement of an established
    unit as that at Glenfield in the manner described will have profound negative
    consequences on the outcomes of patients needing ECMO. Providing ECMO requires
    a small village of physicians, surgeons, nurses, perfusionists, respiratory
    therapists, blood bankers and multiple other vital cogs in care. The
    institutional memory and expertise coherent in the team cannot be quantified.
    It’s clear, however, that the Glenfield team exemplifies the results of this
    expertise”. They also said the Glenfield programme was “recognised as
    one of the finest ECMO programmes in the world.” Surely this is quality?

    In their letter, the
    doctors said: “We are disappointed, as the community of ECMO experts, that
    more extensive consultation was not requested. We would all have been glad to
    have offered experience and we all remain willing to do so.”

    This final statement from the international experts only serves to fan
    the flames of my concerns. The same responses are repeated in support for the
    need for change, while the true concerns continue, unheard and unaddressed.

  • Peter May

    On the 26th of July 2011 you gave an interview in the Independent. These are your own words Professor Boyle:-
    “The heart czar had given a speech in which he described Lansley’s claim that the NHS was over managed as “complete baloney”. He had critcised the NHS reform strategy of throwing out the old and bringing in the new “without even looking at things that have worked well,” and had warned about the dangers of dismantling relationships nurtured over years and destroying “corporate memory.”
    A day or two later he appeared on the Today programme to re-iterate his criticisms, expressing the widely held view that what the NHS needs now is “stability not more change.”
    You have done a complete U turn regarding childrens cardiac services. What you have proposed in Safe and suatainable cannot be implemented for many reasons. No one ever said the system did not need to be looked out but there are so many flawes in the review process it is criminal. You are planning on radical change yet you claim what the NHS needs now is stability …what a joke. Yours and the commitees actions will destroy well established and skillied units….skill will be lost along with lives if we follow your utopian view. You do your profession an injustice Sir.

  • Anonymous

    A lot of downthumbs are occurring round by here on this blog site recently.
    Wonder why? ummm, rub chinny-chin-chin….

  • Anonymous

    Ach, bugger it, some more Sue White sorting out another one of her docs, and also, since it is Sunday, discussing religion, thoughtfully,

    I gladly await more downthumbs – beat me whip me, and, call me names, and see if I care.

  • Susan I am unsure what you understand of “children’s heart services” in the new model of care, in for example Leeds and Leicester. Currently there is provision for children with congenital heart disease in cities and towns throughout the UK that do not have a specialised children’s heart unit. These services consist of the following: 1. Out-patient services where children can be initially diagnosed with a heart condition by means of specialist cardiac scanning and other tests. These services are sometimes run by local paediatricians with a specialist interest in cardiology or a general paediatrician (6 months training as opposed to 5 years for a paediatric cardiologist) and a visiting paediatric cardiologist from a specialist centre.2. In-patient services as part of the general paediatric services of that hospital ie beds on a general paediatric ward looked after by general paediatricians and general paediatric nurses. Children with congenital heart disease clearly suffer the same childhood illnesses as other children. If at the time of admission to these services there is felt to be implications for the child in terms of their heart problem, consultation is made with the specialist centre and often a transfer is arranged. Specialist investigations such as diagnostic catheterisation and MRI/CT may be a part of the assessment for this child and will not be available in terms of specialist radiologists & interventional cardiologists. The new model proposes that centres such as Leeds and Leicester can maintain their current range of skills and services when the surgical and interventional cardiology care is removed….this is simply not true. 90% of the current paediatric cardiology in-patient services (beds) in the specialist centres are occupied by babies and children either prior to or after surgery or interventional cardiology procedures. Paediatric cardiology wards will no longer have sufficient activity to stay open and therefore the services will transfer to general paediatrics (see current model above). This is what had happened to Oxford prior to surgery ceasing as the numbers there were so low. So we now have a scenario where children’s cardiology services are merged with other paediatric services, there are no longer patients prior to or having undergone surgery/complex cardiology intervention in the paediatric intensive care unit so the numbers and skills of specialised staff who currently support that work will diminish. Remember that the specialist technical staff (who support initial and on-going diagnosis/check up patients) develop and retain their skills because they see the whole range and journey of these patients from before birth to adulthood. If we return now to the current model of services I think it should be clearer that the concept of a specialist paediatric cardiology centre without surgery and cardiology intervention is actually what currently exists in Sheffield, Derby, Nottingham and other cities ie an excellent general paediatric service with limited paediatric cardiology expertise and in terms of children and families, the main expertise in the surgical centres. This returns the debate to the question of capacity and skills. Take the proposed children’s cardiology centres out of the debate (they will not exist in 10 years time when current staff have moved elsewhere or retired) and will Newcastle and Birmingham be able to provide the services that Leeds and Leicester currently provide. I suggest not.

  • Red Robin

    Going to leave you with a thought! Interesting to note that organisations such as HSBC, Lloyds TSB, Johnson dry cleaners, John Lewis (to name a few) were some of the organisations consulted in order to come up with this decision. If you’d like a full list of the other companies, please look on the safe and sustainable website, under appendix M – the consultation report from ipsos mori!