The new Congenital Heart Disease review: 8th update

Since the publication of this blog John Holden has left NHS England.

Not your usual blog….

A different sort of blog this week, breaking the usual fortnightly cycle.  I’m blogging today to draw your attention to a number of papers we have published on our new CHD review web-pages.  These papers will be considered by our Board’s Task and Finish Group at its meeting on Monday 30 September 2013.

We are taking the slightly unusual step of asking the Group for a steer in parallel with asking for your comments.  We wanted our Group to be able to give their steers on these issues now, but we also wanted your views to be taken into account.  Realistically, there won’t be enough time for you to consider and comment before the Group meets.  That’s OK – let us have your comments and we will ensure that any final decisions (e.g. about the proposed governance model, terms of reference etc.) take full account of your views.

I would like to specifically draw your attention to Item 5: Proposed scope and interdependencies As you will see the paper outlines what we already know about the scope of the review, as well as illustrating those areas where more work is needed before a judgement can be made. We plan to take questions about the scope of the review to the first meeting of the Clinical Advisory Panel on 15 October 2013, and we really do want to feed your views in to that process.

Please let us have any comments on this, or any of the other papers, by Monday 7 October 2013.


John Holden was previously Director of Policy, Partnerships and Innovation, since the publication of these blogs he has left NHS England.


  1. Rachel Perkins says:

    Hi, Hope this isn’t too late but my 18 year old daughter who has CHD, Pulmonary Atresia with intact septum and has a TCPC palliation, has developed arrhythmia over the past couple of years, so had an ablation that failed in March – due to the complexites of her heart and circulation, so this is now being treated with medication. Her treatment was at the Brompton where her consultant cardiologist is able to work closely with her electrophysiologist and it would be foolish not to tie these services in together as it is all part and parcel of her complex anatomy. Please listen and understand how important it is to keep everything up together for these children, young adults, adults – the same services need to be offered within the same facility.

  2. Richard French says:

    Could you tell me who you will be talking to in relation to ECMO services, are you bringing in an expert from outside the UK for impartial views

  3. Cllr John Illingworth - waiting for response from John says:

    “Personne n’est corrigé; personne n’a su ni rien oublier ni rien appendre.” Charles Louis Etienne, Chevalier de Panat 1796

    This quotation, which is believed to form the basis for Talleyrand’s famous observation about the intransigence of the Bourbon dynasty, seems particularly apposite for NHS England at the present time. Has your organisation learned anything from the mistakes of the last five years, from the millions of pounds that have already been wasted, from the Report of the Independent Reconfiguration Panel, from the Parliamentary Debates, or from the two Judicial Reviews?

    There will, in due course, be official responses to the meeting of the Task and Finish Group from Leeds City Council and the Joint Scrutiny Board. These responses will be delayed by the need to properly consult with colleagues and, sadly, by the need to seek legal advice. This message is an interim response which complies with your published deadline, but it is sent in a personal capacity because there has not been sufficient time to consult widely about my draft.

    As yet, relatively few people in Yorkshire and the Humber are fully aware of the decisions of the Task and Finish Group, but among those that I have contacted, the reaction has so far been unanimous: “The old boys’ club in London plainly has a preferred outcome in view, and they are busy selecting the evidence that will deliver this.” If NHS England wanted, at a stroke, to demolish all the goodwill associated with the New Congenital Heart Disease Review, then I could not devise a better way to achieve it.

    It may be lawful to publish the official notice for a public meeting in a blog. This is untested territory, because blogs did not exist when the relevant legislation was drafted, but it implies a contempt for your audience which I find appalling. Blogs are essentially personal opinions, supported by contemporaneous observations and reasoned arguments, but without official standing. If necessary or expedient, blogs may ultimately be denied or ignored. Blogs are not the first place that most people would visit for official announcements. If NHS England plans to continue this practice then we may all have to get used to it. The practical effect in the present circumstances was that neither the public not their elected representatives in our region had adequate notice of the Task and Finish meeting, so they had no opportunity to comment before the decisions were taken, and no opportunity to attend the meeting to hear the proceedings for themselves.

    The essence of the Public Bodies (Admission to Meetings) Act, and the more explicit local government legislation which has followed, is to expose official arguments to public criticism before a decision is taken, not afterwards as NHS England appears to believe adequate. The Task and Finish Group fails on both counts: there do not appear to be reasoned arguments to support the decisions it has apparently taken, and even if reasons were provided, these were not tested by the public before the decision was announced. I say ‘apparently taken’ because it is quite difficult, from the limited information supplied, to deduce what the Task and Finish Group finally resolved.

    The people that I have contacted across Yorkshire and the Humber are frankly incredulous about all three issues that have apparently been ruled “out of scope”. All three excluded issues strike me as entirely central to arguments about the whole life pathway and the standards of patient care. In the absence of reasoned justification, the most likely explanation seems to be that some of your preferred “winners” do rather badly on these assessments, which are therefore being discounted and ignored.

    NHS England does not appear to understand important concepts such as “transparency”, “accountability” and “evidence-based”. Despite considerable trumpeting in the media about the need for transparency, NHSE is among the most opaque bodies I have ever encountered. We have to drag information out of your organisation, slowly, reluctantly, while your colleagues assiduously exploit every legal loophole to delay or restrict release. Either they are hugely exaggerating their difficulty in locating basic information, or your internal organisation must be a shambles. Health Scrutiny inquiries that we submitted in March 2013 have only recently received a response. Access to the requested information was refused with inadequate reason, after a seven month delay, quoting legislation which does not apply to Scrutiny Boards. Recent entirely legitimate requests for highly relevant information from NHSE are simply being ignored. It is impossible for the public to hold NHS England (or your predecessors) to account, because when challenged your organisation often refuses to answer, or denies doing things that it has obviously done.

    My biggest disappointment is NHS England’s lack of regard for scientific medicine, and obvious preference for biased, anecdotal and partial accounts from a select band of insiders that you already know and trust. UK cardiac surgery records are reasonably good, and offer considerable opportunity through multivariate statistical analysis to identify those factors that strongly affect outcomes, and those that do not. Why is your organisation so reluctant to do this? Is it because NHSE already has some inkling of what a genuine scientific analysis is likely to show?

    External factors that might reasonably be expected to affect surgical outcomes include:

    • Ethnicity
    • Social class
    • Travelling distances
    • Size of cardiac surgical unit
    • Historic NHS spending patterns
    • Co-located and interdependent services

    This is not intended to be an exhaustive list, nor is it intended to replace those clinical factors (such as the patient’s age and weight) which have already been identified. Having established the PRAiS system for partial risk adjustment in cardiac surgery, why did NHS England not attempt to identify the most important confounders and other external factors that should also be taken into account?

    This is not an unduly difficult task, nor should it take very long. I could do it, although I should benefit from professional statistical advice! What concerns me is that NHS England has not done it, and it has made it impossible for anybody else to do it, through a misplaced concern for “patient confidentiality”. This seemingly does not apply to ‘political’ supporters working on the inside. There is a fundamental scientific requirement to share your data with other professional analysts who may have differing views. This is entirely compatible with protecting patient confidentiality, as all clinical researchers understand.

    NHS England seems intent on creating a privileged elite, a “high priesthood” who enjoy preferential access to your performance data, and also to the politicians and civil servants who will determine national policy. I have been researching the backgrounds of your key decision makers, who are mainly drawn from a restricted geographical area and a restricted social class. In no way do they represent this country as a whole. After 34 years in Local Government, and Research Fellowships in Cambridge and Philadelphia, I well understand the exclusive process that is going on. These activities are not something that you should be proud of. In my experience they will result in poor administration, and worse outcomes for the majority than could otherwise be achieved.

    There is one basic political concept which NHS England should take on board. Local and national government is based on wards and constituencies for an excellent reason: it is to ensure that, as far as practicable, people from all areas of the country carry equal weight. Our electoral system is imperfect, and there is great scope for improvement, but it is considerably better than NHS England currently achieves. Equitable representation for the 5.5 million people living in Yorkshire and Humberside would be a good place to start.

    Cllr John Illingworth
    Chair: Joint Health Overview and Scrutiny Committee
    Yorkshire and the Humber

  4. Disinterested Bystander says:

    It would be good to know what the practical difference will be between being “in scope” and being out of scope, but with relationships being “managed.” My view is that any service where the quality or configuration is going to be materially impacted by the review should have equal standing (proportionate to population effected*) in terms of weighing safety, quality, research and access when choosing between options. For services like paediatric transplant and ECMO (and tracheal surgery, although I imagine that will be moot), where the configuration is wholly subsumed by the units being reviewed then I’d imagine that would amount to being “in scope” by any definition.

    For services that are not absolutely dependent on child heart surgery, but may have logistical or financial interdependencies for some providers, including those that have already been decided to be out of scope, I’d hope that “managing relationships” would include taking them fully into consideration in the decision making process, rather than simply considering mitigation or, worse, worrying about what to do with them after a decision has been made. That would include adult transplant and ECMO- as, if the same senior staff are providing adult and child services, and children’s services have to be moved to a different city, they’ll have to make a decision between following the children’s services or staying put, to the detriment of one or both. It would also cover other paediatric services in units that would lose their PICUs, or be rendered financially non-sustainable by being de-designated.

    One of the main problems with the first review, in my view, was that interdependent services were treated as a footnote or an obstacle to be got around. “Quality” was given by far the greatest weight, in response to public consultation- understandably, as people interpret that as “is my child more likely to survive”- which then became largely about the Kennedy assessment scores. Quality for interdependent services like ECMO and Transplant were relegated to the rather drier sounding “deliverability” with a much lower weighting. Other interdependent services didn’t feature at all in the final scoring, and this was particularly noticeable where options that were identical except that one contained three London units and the other two, scored exactly the same.

    *Although not always: services that are rare or unique might weigh more heavily than those that are valuable but with alternatives available.

    NB: I’m not a medical professional, nor have myself or my family had need for any of the effected services, but you never know what the future holds.

  5. Alan Magee says:

    It is vitally important that services for children, young people and adults with congenital heart arrhythmias are in scope for the review. Management of rhythm disturbances is an essential element of the Congenital Heart Disease pathway. Likewise children and young people with acquired heart disease are looked after by congenital teams. Nationwide thare is an increasing and often difficult to meet demand for extra corporeal membrane oxgenation support and bridge to transplant for children and young people with congenital and acquired heart disease. This must be part of the review.

  6. Sue says:

    Given the figures for deaths from arrhythmias in England are significantly higher than congenital heart defects it is quite unbelievable that the implications of any major changes to congenital heart surgery services have still not been fully considered in respect of the arrhythmia services. Why are the children who use the childrens EP services not given equal and fair consideration along with other children with other heart conditions or who use childrens cardiac services? Sufficient information should be provided to the parents and children as to the full implications for the future of their services.

    There are clear limitations as to what the local services can do within their staffing and financial restraints. Some of the things that they wanted to bring closer to home in the original review could not be done in alot of the trusts which run local clinics. The children should be managed by experts in EP. Local pediatricians with expertise in cardiology are not fully trained in this area. The quality of care for the arrhythmia children should not be made worse for any child as the result of any changes.

    The original safe and sustainable review was meant to cover 7 specialized services areas one of them was childrens EP services. This was not done before the original review decision was made. If the the original decision had gone ahead a sledge hammer would have been driven through the whole childrens arrhythmia services, which is quite unacceptable, and could have left children and their parents travelling unacceptable distances for even the most basic care. This patient group should not be made to suffer because of the failings of those involved in the original review and no removal of heart surgery from any centre should be considered before the full safety implications of the arrhythmia services are fully considered. This service must be fully considered as part of the new review.

    The current EP services provide valuable life preserving technolgy to those with arrhythmias and it is deeply upsetting to parents of children so see their children constantly pushed to the back of the line. Pacemakers and ICD’s make such a great difference to the quality of life of the children. The children should not just be slotted in as a afterthought. Pacemaker technology can preserve a childs life for 40 plus years but in order to get this they have to have access to these services. NHS England have no entry for children and congenital heart conditions signs placed at the doors of many local adult EP services. If any more no entry signs are erected, the consequences, particularly outside of London, could be devastating.

  7. Eric Charlesworth says:

    On behalf of the 3 Leicester, Leicestershire & Rutland Healthwatch Boards, for which I have the CHD review Lead, I welcome the opportunity to respond in within the timescale to Blog 8.Prior to doing so, there is a key factor which needs to be addressed. That is, despite letters, emails and communication with yourself and Sir Bruce Keogh, we have still only received comments that you are “trying to resolve how to engage with Healthwatch”. Within this statutory obligation, and in view of the huge contribution we made in the call for a review and in evidence to the IRP, we remain very concerned that there has been no formal recognition. We have shared our concerns with HWE. I am aware you are meeting the 3 local OSC’s shortly but again there appears to be no invitation to the local PPI Healthwatch. It was as a result of the close working with the Trusts, and OSC’s that Leicester and Lincolnshire wrote to you expressing their anxieties. It was pleasing you responded very positively to them. I hope the same courtesy could be extended to ourselves. Within Leic,Leics, & Rutland we have a very close partnership working with Glenfield and the UHL Trust and the LA ‘s and media. We also act as the conduit for the East Midlands counties who fall within the Glenfied catchment area
    A response, recognition, and remedial outcome to these on-going concerns would be greatly appreciated.

  8. Natalie Persoglio says:

    I believe that the treatment of heart conditions in children should be treated in the same facilities whether congenital or acquired (and other categories now identified of arrhythmias and inherited) and should therefore be included in the CHD Review going forward.

    Late arising arrhythmia cannot be treated separately as they often need the same diagnostic and interventional expertise as those with congenital defects. Catheter ablation for example will need to be used within reach of full surgical and post-surgical facilities.