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Lansley must give more detailed answers on children’s heart surgery review – guest blog

Posted on 2 September 2012 | 11:09am

Fairly low under the political radar, a review has been going on into the issue of children’s heart surgery. Thankfully, the number of children likely to require heart surgery is small, so it is not an issue directly to affect the majority. But to those it does affect, nothing could be more important.

So with all the other big stuff going on politically, particularly with regard to the economy, health secretary Andrew Lansley may think he can get through this without quite the trouble he had over earlier reform plans.

But it is clear there are concerns not just about the issue, but also the way in which his department is handling it. Teacher Kathryn Batten has been cajoling me via social media to get involved. It is easy of course to generate outrage at the planned cut or closure of any health service, and often things may be more complicated than they seem. So I wanted to brief myself a bit first, and look into it a bit more deeply.

As a result I have asked Kathryn to post a guest blog here because I think it gives a measured and reasonable analysis, but clearly draws attention to issues and difficulties the government needs to do more to address. A link to Kathryn’s blog, and to the petition she wants people to sign, are at the end of the post.

As a politics teacher, who unsurprisingly has a special interest in children’s services, I have watched the review into children’s heart surgery unfold with interest.
Although the aims of the review, (to concentrate or centralise services, in order to create higher volume centres) is essential in order to improve outcomes, the manner in which the review has been performed and the lack of accountability and responsibility for the outcomes is extraordinary.

Closing services will always be a political hot potato, and Andrew Lansley has surpassed himself in his attempted to distance himself from the outcome.

As with all nationally commissioned services, the final ‘sign off’ is the responsibility of the Minister for Health, and was a decision that Mr Lansley took on the 13th July. Interestingly, local MPs had secured a meeting with him the following Tuesday, but he took the decision not to wait to hear the opinions or concerns of the MPs but to go ahead ‘on the advice of clinicians’. This group of clinicians represented the hospitals commissioned. NONE of the units decommissioned had a representative on the panel.

Their findings were presented to the Joint Committee of PCTs, who concurred with the recommendations and submitted them to the Minister. The fact that this group will be disbanded in the near future, under the reconfiguration of the NHS, could be interpreted as a clever manipulation of outgoing organisations to deflect the heat from a decision truly made by the Minister for Health.

There are many issues arising from the consultation, which demonstrate lack of consultation and lack of insight.  Of greater concern is the increasing realisation that no answers to these issues are forthcoming and no responsibility for the decision is being accepted by the Minister and his Department.

Briefly, some of the issues that I have repeatedly raised, and have had no reasonable response to, relate to out of date data, capacity and ECMO (Extra Corporeal Membrane Oxygenation i.e. heart and lungs) mortality rates.

This review should have been set up to look at Congenital Services; instead, there are two reviews, one for the paediatric (babies and young children) component, and another for these same patients as they grow up. This is despite the obvious inter-relation between the two. They are operated on by the same surgeons, cared for by the same team and reviewed by the same cardiologists. This is a move that has been accepted as a major failing by all those involved in the review.

Cynically, I could suggest that this will mean that all those involved get paid twice.  £750,000 was spent on PR alone in preparation for the initial review. The remaining costs have been withheld, despite repeated requests under the Freedom of Information Act. The impact of failing to incorporate the two reviews is being completely overlooked. How can there be any form of consultation for the older patients, when the reconfiguration of services has been agreed and signed off?

The consultation document that was made available for public comment is based upon flawed data.  The data relating to actual operations is derived from the period 2002/03 to 2006/07, which is stated to be the “last available data” [p206]. Underestimation of number of births, failure to incorporate the patients who will be flown over from Belfast (oh yes, that review was kept quiet, and separate) and failure to look at the increasing complexity and requirement for surgery in particular ethnic groups, all points to a significant underestimation of the number of cases which will be performed in the next 20 years.

This entire argument is flawed from the start, as the data represents neither current activity nor the true need. The data used to determine the recommendations is flawed. Patient flows in particular,show a lack of insight, and are being used as an argument against the review down the East of the country (where no service will be offered, following recommendation of closure of both Leeds and Leicester).

Would you travel past a commissioned unit 30 miles away from your home to another 90 miles away, because it has been determined that is where you need to go to ensure that the unit further away has sufficient patients to maintain adequate service provision?

Within the new patient flows, this will be the case for some Midlands patients who will bypass Birmingham and travel to Bristol. If you refuse, and stop at the commissioned local unit, what will happen to the waiting lists there? Surely patient choice is a founding principle of the NHS?

Of national concern is the closure of one of the world’s leading ECMO units. ECMO  is a bypass for heart and lungs, which allows them to rest while recovering. Glenfield in Leicester has a survival rate of over 50% higher than any other unit in the country, and is comparable to the best in the world.

In a statement by the Leicester University Hospital Trust, they demonstrated that over the past 10 years this would have equated to the additional deaths of 62 children, if they had not performed at this high level and performed at the acceptable level of the other units in the UK. Respiratory ECMO, under the new plans, will be moved to Birmingham Children’s Hospital. Although this hospital is internationally renowned, by their own admission they “have not done a respiratory ECMO case to date”.  How, therefore can this move be positive? How can a decision like this be made without so much as undertaking a risk assessment or health impact assessment?

These clinical issues are being highlighted by clinicians, however the political responsibility to facilitate their discussion in an open forum. Following the MP scandal, we are repeatedly reassured of the new transparent system. How can we then explain this failure to answer our questions? Why is the identical letter being circulated from the Department of Health, irrespective of the questions asked? How is this democracy?

The planned termination of the paediatric heart services at The Royal Brompton, Leicester (Glenfield) and Leeds General Infirmary raises further concerns.  It appears that there is a general assumption that the surgeons operating in these centres will remain in post until such time as their centre is closed, at which point they will either transfer across to one of the other centres or they will leave the NHS on termination of their contracts.

I know that this will not be the case and that these highly-skilled paediatric specialists will view such options with disdain and seek to move at the earliest opportunity in order to further their careers within their specialisation.  They are not going to move sideways into another centre; they are certainly not going to move downwards; and they will definitely not remain to perform adult services.  In the event that these surgeons receive a lucrative offer elsewhere and move before the scheduled closure of their centre, what contingency is in place to cover the subsequent hole in service provision?

Addressing Leicester (Glenfield) specifically, the population within the city of Leicester alone has increased by 16% since 2001; more than double the national figure.  The majority of that population are of Indian sub-continent ethnicity, a group which, statistically, is more likely to suffer congenital heart disease than any other.  Consequently, the decision to terminate paediatric services at a hospital strategically located within the community makes no sense.

Demographics have been ignored in a review process that has focused too closely upon a narrow set of clinical criteria thus overlooking the wider picture. It is akin to a London veterinary practice devoted solely to the treatment of sheep.

One assumes that the majority of Leicester (Glenfield) patients will be referred to Birmingham Children’s Hospital, which will require expansion in order to accommodate the increased numbers.  Some of the Birmingham Children’s Hospital’s buildings are magnificent examples of Victorian red brick construction and enjoy the protection afforded by being Grade A listed; the downside of which is that alterations and extensions are subject to restrictive planning consents.  The entire complex is located within the busy centre of the country’s second largest city and in the stranglehold of  two major dual carriageways, the Victorian red brick Law Courts and a number of multi-storey buildings.  Expansion outwards is nigh impossible.

Leicester (Glenfield), on the other hand, is located within a very large green-field site with more modern buildings that would enable major expansion. At present, the Freeman (Newcastle) and Great Ormond Street (London) have Extra Corporeal Membrane Oxygenation (ECMO) beds but Leicester (Glenfield) is unique in that it is the only one with a complete ECMO unit providing cardiac and respiratory facilities to children and adults.

Closing down the unit at Leicester (Glenfield) and transferring the service to Birmingham Children’s Hospital removes the only facility within England to provide respiratory ECMO to all ages.  Its importance to adults with respiratory problems cannot be overemphasised in the light of its criticality during the 2010/11 outbreak of H1N1 influenza (colloquially called swine flu). After closure of the Leicester unit, where would adults receive respiratory ECMO treatment?

Historically, ECMO was brought to the UK by a Leicester charity, when the NHS refused funding. It has been developed over the past 20years and Glenfield is now one of the world leading experts of ECMO with a mortality around 20% lower than any other unit in the UK (ELSO database).When relocating any specialist provision it has to be borne in mind that its assets are composite.  It may be a relatively simple operation to move the physical assets (equipment) but persuading the human assets (staff) will be a different problem.

I have already stated the position with respect to surgeons and a similar situation may prevail with respect to support staff, especially the married ones who will have their spouses’ careers and the stability of their children’s education to consider (among many other things). Expertise can be lost quickly – unfortunately, it takes much longer to regain it afterwards.

An international ECMO expert, Kenneth Palmer, has already advised of the possible clinical consequences of this closure action, to which I can only say amen. Mr Palmar also claims his recommendations were not only ignored, but that he was misquoted when asked for information by the panel. Furthermore, there has been no risk assessment or health impact assessment of closing the ECMO unit down.

These are just some of the issues which have not been considered, in a review which international experts are stating will cost the lives of many children. The final “decision’ was made by the JCPCT, which will be disbanded in the near future. This in itself demonstrates the clever manipulation of an outgoing organisations to deflect the heat of a decision truly made by the Minister for Health, and as was demonstrated by his failure to wait and discuss with MP’s, it shows a  disregarded for colleagues as well as the public. I feel strongly that the public must hold the government to account and this can be done by signing the petition to ensure that it is debated in Parliament.

The petition can be signed here

Kathryn’s blog can be found here

  • Anonymous

    A heck of a lot of things are coming in under the radar with these lot, and they are causing chaos wherever they go. Rome wasn’t built in a day, as the saying goes, and they want to knock it down and rebuild it in five years. Stalin was fascinated by five year plans, wasn’t he?
    These numskulls with the power these days are, frankly, clinically nuts!

  • Michele

    It must be dreadful for everyone when children have to be taken many miles away to be treated with the expertise needed, it’s not just about the surgeon but also the after-care specialists.

    Danny Boyle’s OC celebrated Gt Ormond St Hosp for Sick Children (the GOSH) and I saw a very late night TV series about a year ago that was all based there, about the frightening difficulties they deal with 24/7 and the strain on staff and parents.

    So many more surgeons specialise in putting lumps of gel in women’s chests or lips than dare to tackle something as difficult as a little child’s organ transplant and I don’t think it’s all cynical; expertise can only be gained with repetition and practice.

    I do have a feeling that what is being planned would have had to even if we’d been less kneejerky and idiotic in May ’10, sensible enough to return a Labour Govt that would have educated us all about situations.
    http://www.trainee.baps.org.uk/page4/page5/assets/Childrensurgery.pdf

    There is so little explanation and consultation re NHS changes, that’s disgusting.
    The fact that the coalition has made a majority of 100+ votes means Govt has no need to bother with the NHS’s actual owners, us and our need to be informed and included.
    We own the NHS, we’ve paid for it and built it up and we employed people that looked after it and grew it till 2010, slashed waiting lists, brought GPs in to line and to understand they were public servants despite being self-employed and just had the right priorities.

    We don’t hear of any private hospitals that specialise in paediatrics, that’s the giveaway about private health’care’.

    I bet we’re about to.

  • Orla

    Very interesting indeed ! Surgery MUST remain in Belfast, the only service for Children in NI !!! Review came back saying it was Safe but still recomended to close is beyond a joke !

  • Red Robin

    What I’d like to know is who will be accountable for the predicted extra deaths? Will someone be taking Lansley to court on a manslaughter charge, or will he again be blaming the clinicians?

  • Anonymous

    Yes Michele, totally agree. And as an aside, UK debt, relatively to other first world countries, is quite low, so why are they killing kiddies, I suppose the question needs to be really asked? Ey?
    They are really treading very thin ice if this and other things really get picked up by Joe Public. It makes you think who is their puppet masters, us the electorate, or people in some perverted dark shadow. It does, doesn’t it? Or, still, as I have already said, they just might be basically psychotically nuts, you never know, and need therapy, or some other attitude adjustment.

  • Michele

    I don’t know how to ID from whom Likes or Dislikes have come, it doesn’t usually matter anyway.

    I hope whoever has had the motivation to do a down-arrow doesn’t NEED the anonymity that my lack of IT nouse affords them.
    Out yourself and explain exactly what you disagree with please (just so I know there’s some logic, we all have emotion but sometimes it’s a waste of time when the disagreement is simply about the HOW TO for the very best quality).

  • Red Robin

    Hi Michele
    I believe London run quite a lucrative business in children’s heart surgery at the Heart Hospital. Obviously that wasn’t included in the review!!

  • Michele

    Show some facts please (or you might even bother to read the OP instead of guessing about its contents).
    I quote …….
    Although the aims of the review, (to concentrate or centralise services,
    in order to create higher volume centres) is essential in order to
    improve outcomes,
    I unquote.

    The title is demanding INFO about what is happening, not objecting to it in the first place.
    If I had a child whose heart needed surgery I would want it done by a specialist, not someone that might have been hacking at bunions (albeit in a cosy cottage hospital nearby) for their previous op.

    It’s really not something to wimply emote about.
    Children whose hearts need fixing (or even need transplnts) need the best experts and the best facilities at centres of excellence.

    IF it was you that did the downward arrow, apologies for having not ‘allowed’ for the time difference between an immediate ‘strike’ and a post appearing.

    Grow up ffs

  • Michele

    Yes, it was sold in to private hands in ’94 under the penultimate batch of Tory knowall-ing but went bust and was bought back in to the NHS less than a decade later.
    I daresay it does also take in private patients now (and hope the administrators charge their insurers to the max 🙂
    I hope that the private patients at NHS establishments are treated in just the same way as others.

  • Anonymous

    Sorry Michele, wind your neck in love. Was just picking up what I thought you said that specialist hospital departments in this country are closing down, and so makes it much more logistically difficult for parent/parents/relations to help their sick kiddies.
    Or have I got it even more wrong?

  • Gilliebc

    For goodness sake Michele get a grip. Just because some strangers have had a go at you, there is certainly no need for you to lash out at Ehtch! Your last sentence in particular is totally unnecessary. For some odd reason Ehtch seems to like you! So please, show some good manners and simple common decency for him and others who have been regulars here for far longer than you.

  • Michele

    At least organise the chronologies of posts however it’s possible on your own settings before spouting so wrongheadedly Gbc

    The ‘strangers’ clocked in early afternoon, the arrow happened last night, as did my response.
    My apology for my response to H (if indeed the arrow was from him) was this morning after his post had appeared.

    I always think 1:1 is best when both sides are voluble and I don’t think H needs you nursemaiding him (or talking as if he’s in need of your care and protection).

    I do not think emoting is the right reaction to this controversy, spouting about ‘killing kiddies’ does not apply and would be upsetting for a parent reading it. …….. …. emoting …… cheap and easy…. the soft ride.

    Children need expert surgeons, people who know what has NOT worked in the past, not someone that has not got either the experience, the hardware or after-care facilities that critically-ill children need even more quickly than critically-ill adults.
    Can you imagine the responsibility of being a surgeon that is ill-equipped but will never get over not being able to save a child?
    Having to comfort parents because the technology that exists simply cannot be everywhere
    Why do you suppose there are not even enough paediatric surgeons in USA?

    Had you read the ‘pdf from 2007?
    I think I can guess you had not.
    Set to ….. chop chop.

  • Michele

    That particular piece of advice is needed elsewhere imhoo

  • Anonymous

    Shut up Gilliebc, hold your tongue woman, : )
    I have already noticed that Michele has been targetted by these right wing scum that have decided to suddenly visit here, so I understand.
    .
    So let us hear the last of it, shall we.
    .
    Three in a bed lovelies?
    .
    Just thought I’d try it Alastair, and why not, ey?

  • Michele

    The trouble, sadly on this topic as well as on so many others, is that we’re often responding to each others’ points instead of looking for objective info.
    We just need to google along the lines of ‘child mortality after heart surgery UK’ to see that there’s a lot that’s wrong with things as they are, things that were set to change under Labour too.

    There are so many reports of ‘extra child deaths’, a description that suggests unexpected; so many opportunities for certain hacks and rags to have a go at doctors and the NHS in general because it has tried to keep things local. It can’t always be the best thing for the child or for a surgeon that doesn’t feel they have the expertise.

  • Anonymous

    Anyway, been speaking to you Gilliebc amd Michele for ages now, have you both heard of Alison Goldfrapp? Lovely person. Met her in 1989 in Trent Park, Middlesex Poly.
    .
    Anyway, an Alison Goldfrapp song done by her mate, Will Gregory, to turn the sound up, as you shower – yes, get in there, clean those crevices out, you really do not know who might be calling by soon, oh yes, for a knicker insepction, oh yes : )
    http://www.youtube.com/watch?v=MNDQDz6IyFQ

    Yes Michele and Gilliebc, turn the music RIGHT UP while you are showering, and think of me, fiddling with that thing at the top….

  • Gilliebc

    @c44b2e9a3f91a457e02929a4f8997d01:disqus
    How exactly did I Spout off so ‘wrong headedly’? Use your loaf Mich girl, there’s no way Ehtch would have given you a ‘thumbs down’ and I didn’t either, just so you know.
    If you see my sticking-up for Ehtch as ‘nursemaiding’ that’s just weird! I would stick-up for any of the ‘regulars’ including you if I thought they needed a bit of support. Though I think you are more than capable of handling 1 or 2 irrelevent trolls. You stuck-up for me once and I haven’t forgotton it. So obviously I would do the same for you should the need arise. Most regulars here are basically on the same side even though we have slightly different interests and priorities. Which brings me onto the actual subject of the thread. Your guess is correct, I haven’t read the PDF. ‘chop chop’ lol – certainly ma’am 😉

  • Gilliebc

    Sorry Ehtch, I wasn’t trying to ‘nursemaid’ you. That was such a weird comment from M!
    I won’t bother again.
    Three in a bed – in your dreams boyo! You’re such a chancer 😉

  • Red Robin

    You are right again Michele. I’m afraid that most people are not interested unless it affects them. And yes, this does affect me as a parent, therefore I have strong feelings about the issue and will do what I can to ensure that the best outcome for all concerned is reached. That is partly what is so interesting about this. Having done a little research, the person who wrote this blog lives in an area where the local unit is to stay, and yet she is querying the process. I also know that for this particular speciality that after the Bristol “episode” many safeguards were put in place including a data base which records events and raises the alarm if there are too many events in a place (also interesting that Bristol is to stay open!). That is why and how the unit in Oxford was closed. More importantly, all the remaining units were deemed as safe by this same review that is trying to recommend closure. I think you use of the term hacks and rags is a little extreme in a sub speciality where there are less than 30 surgeons in the country, all of whom are highly trained and carefully monitored.

  • Peter May

    Until I read this I had very little respect for Alistair Campbell but for once I’m pleased to say I was wrong. Eloquent and informed. Well Done Alistair and Kathryn

  • Michele

    I’m not sure why you’re suspicious (if I’ve understood your comment properly) about the writer living in a place that won’t be directly affected, she’s a professional person with a special interest in children’s services.

    I don’t happen to agree with the objections but it’s a democracy (and I’m less-informed, despite the reading round that I’ve done during the blog).

    We’re being asked about sick children being transported to specialist centres when the only alternative to that that I can see is the best specialist surgeons travelling to them and not being in close proximity to all their little patients at all times (as would be the case in the bigger centres with more-condensed expertise).

  • Michele

    ” ……………term hacks and rags is a little extreme in a sub speciality where there are less than 30 surgeons…………..”

    It refers to hype-merchant journalists and their employment, where knocking the NHS is done for sales.
    It has nothing to do with surgeons.

  • Michele

    ofhs you really don’t organise points!
    Neither do I always btw, having used the word ‘charges’ elsewhere when meaning ‘allegations’.
    It’s really not ever so important so why am I bothering with the following ……?
    Perhaps I’m tidier about the wrong things in life !!

    I received a downer on this thread Sun night, my first on the new Disqus as far as I’ve noticed.
    That was it, a seemingly-cowardly strike from somebody that wasn’t ID-ing themself with a post with reasons for 🙁
    I recommended them to the same .pdf I suggested to you later (although it’s not all the info this controversy is based on …. there have been other investigations and lots of media whipping up).

    I occurred to me some time later that they might have also placed a post, one which hadn’t yet come up for the reasons we know.
    Inhale.
    Next morning H’s post had arrived, I apologised to him IF he had also been the striker as …. inhale …. it would mean it had not been a hit and run.

    I had not joined in the grumbles about Dislikes when this version of Disqus was adopted but an inherent annoyance of it (as I just discovered) is the immediacy of a seemingly-anon and thereby-wimpy strike when in fact it might be backed up by a non-wimpy explanation of itself arriving hours later.

    Inhale?
    All clear (or just tedious)?
    The downer on this thread has nada, zilch, nuffink to do with the many elsewhere from the Ass’s fans / hit and run merchants.
    They happened 20 or so hours later and were about as meaningful as porridge.

  • Anonymous

    We can all dream, as I no doubt you are now. : )
    .
    time to buy a king sized bed, he says, for bedroomed athletics…..

  • Anonymous

    Anyway, all, Lansley has himself has been fannied off.
    No idea who has got the brief. Who? you’re joking? HIM! you’re pulling my long plonker!
    .
    oh jeeeezuz fecking wept! Here we go, part two.

  • Anonymous

    spit roast then? sorry, had to be said. : )
    .
    It is hard to tell what sex/orientation you are talking to online, isn’t it?

  • Red Robin

    Hi Michele, no I’m not suspicious, I find it interesting as I think it adds strength to her argument.
    I think the argument for bigger centres is understandable and commendable. However the definition of a “larger” centre is questionable. If you have a look on pubmed, there is no evidence to determine the size of the optimal unit. The only research shows that the outcomes are better in units which do more than 120 cases (which all the current units do). Where is the evidence then, that by closing these units there will be better outcomes, However by closing units, and forcing families to travel, it will make things much more difficult for families. The net gain then is therefore questionable.

  • Red Robin

    Oh sorry, misunderstood!

  • Pingback: A response to guest blog attacking review of children’s heart surgery services | Alastair Campbell()

  • PICU staff

    If it takes 23 years like Hillsborough families to get justice for deaths of our heart kids, then so be it, we will fight.