Something a little bit political...

Well the legs still don't want to run, walk and climb is fine, run makes them feel a bit leary...

Probably the two most contentious words in the congenital heart world (UK branch) are "safe and sustainable", a quick trawl of the support websites or facebook will show many a group being set up to save a hospital or a ward.

I won't be joining any of them. Not because I don't care, but because I care too much.

The origins of Safe and Sustainable go back to the Bristol Hospital Enquiry, and quite simply this is designed to ensure that the surgery that heart kids get is the the most appropriate, done by well trained and supported surgeons who are used to doing the operations and are in a surgical setting which are designed around the needs of the child going through the surgery and their family.

Is that too much to ask? I don't think so. I want every heart kid to get the best surgery available to them, I want their parents to be given the best advice, support and to have confidence that there centre is genuinely world class.

So what's the problem? I'm fairly sure that no-one would argue for unsafe and non-sustainable services... and as mentioned in the blog previously when problems arise there is a clear audit process that should swing into action as is going on at Oxford right now (http://walkingforheartkids.blogspot.com/2010/03/publicity-for-congenital-heart-disease.html)

The problem is we're a fairly rare bunch. That means there's not a huge number of us to share around, and the maths work out that quite simply there's too many surgical centres in England for the number of kids. Too many of the centres don't meet the full standards as set out by the profession, don't have the minimum number of surgeons to provide the 24/7 service, and that's the second problem. And its not me saying this, its the people in charge of the surgeons and nurses providing the care... http://www.specialisedcommissioning.nhs.uk/?dl_id=363 has some of the biggest names in the field, and parents, explaining why they think there's a need for change.

All of the centres which currently do surgery have saved the lives of the kids of people I know, and this is where it gets very very difficult.

I do not know what its like to see your child go through the trauma of open heart surgery, I do not know what its like to have to trust someone else with your child's life, and I can only imagine what its like to feel that the place which has saved your child is being closed, that the team you've made that leap of faith with may not be there because of some government review.

And that means that tears will be shed, because to provide a world class service for all children needing heart surgery means that some surgical centres will need to merge into others. As a trustee of the Children's Heart Federation my job is make sure that the CHF makes sure that your voice is heard on the issues that will affect you, what will the impact of extra travel be (not forgetting that the majority of parents travel for surgery as there are only 11 centres currently), how should the surgical centres and the cardiac clinics be structured to give you the confidence you need.

In my heart and my head I know that this is going to be very hard, but please please make your opinion known... No decisions have been made yet, the safe and sustainable team are touring the country to hear your issues, and having met them they are focused on one thing - ensuring that there are world class services for all heart kids. The list of events are here http://www.specialisedcommissioning.nhs.uk/index.php/safe-and-sustainable-programmes/#cardiac_surgery_services_programme

Just saying your centre is the best isn't the game now, explaining how the services you get currently make you feel is, and why. And its the why which is critical, if your surgical centre changes then those "why" things will need to move, if it grows in size then ensuring those "why" things expand outwards will be critical for the new parents.

So my plea - remember that the fundamental reason behind this review is ensuring that every heart kid has access to the best possible surgery.

I hope I don't lose any friends for this post... But I thought it was an important one to write

TTFN

Paul

Comments

  1. Well said - I entirely agree with you!

    My concern is that the publicity is giving the wrong impression. Today I received a letter from our local charity saying that our cardiac centre is at high risk of closure. My understanding is that it is purely surgery that is being moved and cardiology is unchanged. The 'threat of closure' is being banded about strongly and isn't actually true.

    We've got our meeting next week and I will be attending with interest! I do have concerns but the reasoning behind it I support 100%

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  2. As a parent of a heart child, I do not argue with the fact that developments need to be made with regards to childrens heart surgery, but the problem is that if heart surgery was to be removed from our centre, there would be no need to keep the ward in which my son is treated open.

    My son over the last year has had to be admitted on the ward numerous times for medication adjustments and observations and if the heart ward was to close this would have to be done on a general children's ward without specialist heart nurses and doctors readily available to ensure he receives the best care. Also subjecting him to numerous illnesses which he wouldn't usually be subjected to on a cardiac ward.

    Also because the need for the ward would disappear, what will happen to the specialist staff that currently work there. As nurses are not going to want to relocate as the pay incentive isn't there for nursing staff. Meaning that these specialist heart nurses become deskilled and there valuable knowledge is lost to the industry as they then become general nursing staff.

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  3. Rower,

    as I said, make the points. Explain the evidence behind your comments, "evidence" in this case is as much about what you feel and what makes you feel more comfortable as a parent as the nuts and bolts.

    P

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  4. Seriously, You seriously believe that the best possible solution is for centres to be down-graded and for their to be fewer centres throughout the UK. There are 11 centres which currently perform 3,600 surgeries a year of complex procedures and approximately 3,600 non-infasive procedures.

    You site Oxford in your blog as currently being under review. May i remind you that Oxford's Review is a separate issue which should not be inter-related in the Safe and Sustainable Review. You also say that "All of the centres which currently do surgery have saved the lives of the kids of people I know" I take it by that flippant comment that Oxford is not included as having saved any child's life, I know plenty of mums that would disagree. Oxford has a fantastic World Class surgeon who does approximately 100 to 150 surgeries a year on children and adult's. If Oxford was to shut then it would not be sustainable for him to stay at the hospital doing just Adult Cardiac Surgery. Although i agree that something has to change in order to make them sustainable for the future of our children's children i don't believe the answer should be cutting the amount of units. I strongly believe that each unit should be supported in making the appropriate changes that are required to make them safe and to make the units sustainable you should encourage and support these units into employing the staff that is required. How can you justify putting more pressure on other resources in order to save a few pennies and i'm sorry but that is what it comes down to at the end of the day. Money. Our children deserve the best quality of care and especially my child who has other mental health issues as well as a heart condition. Continuity of care in his case especially will suffer should he have his regular check ups done at Oxford and then have to be transfered to another unit who know nothing about him for his surgery. How will that help his recovery time? The death of any child is too sad to bear but by shutting the units your asking me to risk putting my child's health in danger and i'm not prepared to let that happen. The issue of transportation of emergency patients has been washed over at every single review meeting i have attended so far. How am i supposed to make an informed opinion of anything without first knowing what the infrustructure will be or that any other thought has been looked at. So i'm sorry paul, you certainly don't speak for me who has a child with a heart condition and you certainly don't speak for my son.

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  5. It's interesting to note that the specialists at the Oxford units do not agree with the proposed changes. They have no evidence at all for needing 4 surgeons per centre doing 100 operations each - in fact in the US they have 2 surgeons per centre doing 75 operations each - and they are under much more scrutiny than our system. In their counting they are only counting paediatric operations, not adult congenital ops; "It's the heart that matters, not the size of the body that it's in" (Prof. Westerby) Surgeons could actually end up doing less operations per year with these changes, as they would be forced in to one camp or the other (adult/child)These changes that they are proposing also have no risk assessments associated with them at all - which is a huge worry, and they rely 100% on IT systems for communication between the 3 levels of heart centres. Let's face it, they are living in a dream world if they think all the teams and their associated computers are just going to talk to each other nicely.

    Also, if these surgical units do close, what will happen to the staff? Will they move with the units? Never. A similar change in Scotland led to not a single specialist nurse moving from Edinburgh to Glasgow, and the waiting list for operations doubled. Is this really what you want for our children? It's not what I want for my daughter.

    No - you don't speak for me or my child either.

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  6. Hi,

    thanks for your comments - I think you've missed the some of the points I've made.

    I was actually praising Oxford for taking the audit approach, I would be far more worried by any centre that didn't do what Oxford has done.

    Also I do not presume to speak for anyone - I've asked you all to speak about your concerns and to explain your worries.

    I've said my piece, you've disagreed with me - that's the point of a debate.

    If you've been to the meeting then you've had a chance to air your concerns, there'll also be the formal consultation process when they've made the decision.

    All I want is the best for all children wherever in the country they are born with congenital heart disease. A large part of that is the standards that have been drawn up to try and address the concerns you've raised.

    Paul

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  7. oh, apologies I meant to include this in my post, but hit the wrong button...

    http://pediatrics.aappublications.org/cgi/content/abstract/101/6/963

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  8. Thank you for clarifying that. We want the best too. Our primary worry really is that at the meeting it didn't appear that anybody's worries were being listened to. It appeared more like a bulldozer process. I hope to be proved wrong.

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  9. PS Your link is interesting. It talks about 2 surgeons doing at least 75 ops a year. The review is trying to insist on 4 surgeons doing a total of 400 op's a year - they seem to extrapollating with no evidence...

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  10. Hi, I've found the professions advice on how things should be set up...

    This is the european congenital cardiologists views - now individuals may disagree with it but the majority of congenital cardiac surgeons seem to agree.

    http://www.ctsnet.org/file/OptReqCHS28April2003.pdf

    The issue I'd be worried about for centres with less than 3 or 4 surgeons is assuming everything else is equal how do less than 4 provide 24/7 coverage?

    Paul

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  11. Interestingly, from the document you link to this is the quote regarding staffing levels:

    A CHS unit requires the presence of at least two fully trained surgeons. It is usually recognized that a surgeon needs to perform a minimum of three surgical procedures per week (a bare minimum). Considering a 42 weeks annual activity, the total surgical output for a surgeon is 126 operations. Two surgeons will need 250 operations, three surgeons will need 375.

    2. Not 4 as the review keep on stating. That's a BIG difference.

    There are arguments about the 24/7 coverage... emergencies happen rarely in this field so surgeons generaly are on call more than in other specialisms because they don't get called out so much. And mostly the emergency is requiring stabilsation on surgery. I do think that Oxford should have one more (but they are recruiting I believe), but the review doesn't count all the GUCH operations that are done either...

    The discussion continues!

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  12. Hi,

    I want a world class service for every child, and GUCH, that means the minimum doesn't cut my mustard I'm afraid and there is a need for 24/7 cover.

    Also although they state a minimum, the following says 3, plus those under training:

    1. Surgeons
    The members of the team around the child with congenital heart disease are all of major importance. However, the surgeon carries the main responsibility for the outcome and thus for the inner organization, surgical treatment and peri-operative care. From experience, most congenital heart surgeons perform around 125 operations a year. The labour laws in various countries make different demands on work schedule, on-call schedule, holidays, continued education and other causes for absence. In order to guarantee a responsible surgeon around the clock all year, three fully qualified surgeons should be employed in many countries, increasing the theoretical output of those units to 375 operations. With these considerations in mind, we suggest the minimum for a full time surgeon should be 125 operations per year. A lesser number of procedures may be appropriate in a mixed unit, provided the results are comparable. Having junior surgeons in advanced training or getting help from adjacent structures, such as an adult heart surgery unit or collaboration across several units may modify this.

    The GUCH situation is interesting, the last validated stats on CCAD (2007-2008)shows that were only 827 surgeries in total on us GUCHs... Since then I know that some centres have increased the number of surgeons doing GUCHs. But that's the price of validated stats, they take time to do.

    http://www.ccad.org.uk/002/congenital.nsf/WSummaryYears?openview&RestrictToCategory=2007&start=1&count=500

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  13. Then we should work to increase the units, not close them. If we close units surgeons will retire early or move overseas. We can hardly afford to loose some of the 31 that we have? The number of Guch ops will go up, as the number of patients increases, so even though the number of paed operations won't increase the total number of operations will.

    Sorry - not trying to get heated, but it seems to me that the review is starting from the premis that bigger is always better. And it isn't. I'm still working on gathering my evidence - I'm trying to get hold of a transcript from the meeting at Oxford but they are not replying to my emails, and I've emailed Dr Mark Porter who chaired the meeting and he doesn't appear to have had a reply yet either. They don't appear to be very forthcoming...

    Nathalie

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  14. Hi,

    increasing the surgeons at each centre would be a great response, even if it was expensive. However, the problem comes with the number of kids who operations - its fairly static at 3,600... So its back to how many operations does an individual surgeon and a complete surgical team need to do a year.

    In terms of surgical outcome, I'm not aware of any quantifiable evidence that smaller is better... Sorry, I hope you've seen I'm not picking an argument for the sake of it.

    As for not getting a reply, I will feed that back into the CHF who will raise it with the team on behalf of all parents. You deserve acknowledgement for the effort and care you're putting in.

    Paul

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  15. Paul

    In the States the average number of ops per surgeon per year is apparently 75. If we went from 31 surgeons to 40 that would give us 90 ops per surgeon per year to reach the 3600, and as I say the number of GUCH operations will increase. So we do need to be planning for more operations. I thing one fundemental mistake they are making with this review is not counting GUCH operations in the totals. The surgeons think they should count to the total....

    As for smaller vs larger, I agree that the evidence is not conclusive, but we do know that generally smaller more localised care provides for better clinical results generally accross medicine. Less stree, more personal care and more compassion. I am not a medic or a scientist and have no idea if research has been done on this in surgery let alone childrens heart surgery, but I can not believe that it doesn't matter. It does of course have to be balanced against other factors, but I don't think that we can dismiss size as being unimportant.

    I have now had an answer, after Dr Mark Porter who chaired our meeting emailing them twice on my behalf, just saying that they hope to have more information out in late July. That's not good enough for me. I want the transcript so that I can work through all the evidence that was presented myself. I bet they have the transcript...

    Thank you for your effort too.... but I still want the Oxford surgery unit to stay open!! (Discounting the fact that it is suspended at the moment of course....!)

    Nathalie

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  16. Hi,

    The number of GUCHs equals the number of kids with CHD according to the NHS estimates, and there's only a quarter of the operations per year.

    Personally, if/when I need surgery then I'll happily go to one of the 2 or 3 surgical centres in the UK with a track record.

    Can you give me one reference for the localised care statement? Most surgery seems to follow a volume dependent curve. So increase the numbers and the results get better.

    Now localised support and non-surgical care there are models for, such as diabetes care being devolved to GP practices. Now the model proposed for us is specialist cardiology services (not surgical) will be as local as possible.

    The model I'm most familar is hub and spoke, where you see someone with expertise (and knows the limits of their expertise) for regular check-ups. This gives you the continuity of care, and they refer you to a hub for investigation and surgery when required.

    I don't know how the American's came by their number, and can't find a concrete reference saying how it was developed (or even how long ago the number was created)...

    As I said I'm not fighting for or against any surgical centre all I want is for world class services for heart kids.

    Paul

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