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The new Congenital Heart Disease review: 25th update – John Holden

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From time to time we are challenged as to whether the review has a pre-determined outcome. Some think we have already decided that one or more units have to close, and that we know which ones. Others think that we have already decided that no units will close, come what may. The truth is that nothing is decided yet, but I do understand that in the absence of a simple clear cut decision, everyone will have a view. I recently exchanged correspondence with a national charity on this point and I enclose the exchange here so you can see how I have replied.

Another comment that we have heard recently is: this is all taking too long. I have some sympathy with this view and I would love to accelerate the work of the review, because “limbo” is damaging. But I also know that short cuts in the process will damage the credibility of our conclusions, and leave us wide open to challenge in the courts and elsewhere. We have to follow the process that NHS England has prescribed for the development of service specifications, even where this seems unusually difficult given the wide range and sensitive nature of our review. And we are trying, I hope successfully, to be as open and inclusive as possible. With this in mind I wanted to draw your attention to the papers for our Programme Board on 10 June 2014 (see link below). Item 5 on the agenda (“Timeline update”) explains that we will not now begin consultation at the end of July 2014 as we had hoped. Instead we are now targeting mid-September. We think this is the earliest possible date we could launch consultation, and even to achieve this will be very challenging. In part this is due to amount of work we need to do to prepare the consultation materials. In part it is due to the challenge of satisfying the governance controls, especially providing financial assurance (i.e. that we are not creating an unaffordable and therefore unrealistic specification for the service). I know this delay will be frustrating and disappointing for some of you, which is why I wanted you to hear it direct from me.

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All three of our engagement and advisory groups (Clinicians, Provider Leaders and Patients & Public) told us they would find it helpful to have a joint meeting between the groups, prior to consultation on standards. We have struggled to find a convenient date, so I am pleased to confirm that the date for this joint meeting is now set for Friday 25 July 2014 in Central London.

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You will remember that our “call for evidence” asked for suggestions as to published literature which could be reviewed by the ScHARR team (from the University of Sheffield). In April 2014 we published their draft report, which detailed their methods and findings from a review of the relevant literature. ScHARR were looking to see if there was published evidence regarding any link between patient outcomes and the way services are organised. Since April, their draft report has been quality assured and peer reviewed. The final report is now complete and was published on 4 June 2014 on the NIHR website. You can view the final report here. The implications of their report will be considered by the Clinical Advisory Panel next week.

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Patients, families and their representatives

We held a workshop on Monday 12 May 2014 with members of our Patient & Public Group to discuss how best to achieve an effective consultation on standards. A summary of the key points from the workshop is available here.

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We have done our best to meet at times and in locations convenient to the majority of charities and patient support groups, but for some the timing has meant that it has been difficult to send any representatives on a regular basis. Michael Wilson and Claire McDonald therefore recently met with representatives of Families of Ocean Ward (linked to the CHD service in Southampton) to provide a briefing that summarised the material from the most recent Patient and Public Group meetings.

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The next meeting of our Patient & Public Group (chaired by Professor Peter Weissberg) is scheduled for Friday 13 June 2014 in central London.

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A final reminder – on 17 June 2014, NHS England’s Patients & Information Directorate are holding their second “Open House” day, between 10am and 3:30pm at four locations around the country. Open House days are a fantastic opportunity for patients and the public to influence the work of NHS England at national and regional level, and will provide you with the opportunity to hear about and influence national programmes such as care.data.   For more information, and to register, click on the links below:

Clinicians and their organisations

Professor Deirdre Kelly, Chair of the review’s Clinicians’ Group, along with members of the review team, has concluded her planned programme of visits to the specialist centres around the UK – most recently to UCLH, Great Ormond Street and the Heart Hospital (28 May 2014), Leicester (30 May 2014), and Cardiff (4 June 2014). At the recent clinician group meeting Professor Kelly received additional invitations so we are now scheduling these additional visits. Once all the Trust visits have taken place the review team will pull together a report summarising the visits.

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A meeting of our Clinicians’ Group (chaired by Professor Deirdre Kelly) took place on 2 June 2014 in central London. A copy of the agenda is available here, a copy of the slides used is available here and a note of the meeting will be available shortly.

NHS England and other partners

NHS England’s Board held its regular meeting in public on Thursday 15 May 2014 in London. One of the items considered was the update from new CHD review’s “Task & Finish Group”. A copy of the relevant Board paper is available here. A video recording of the discussion is now available on the NHS England website here. (See Item 9).

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Our Programme Board meets on Tuesday 10 June 2014, and the agenda and papers for the meetings are available here.

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Although separate from the new CHD review, you may wish to be aware that on 30 May 2014, NHS England published the terms of reference for an independent review into children’s cardiac services in Bristol.  This review will be led by Eleanor Grey QC, an independent barrister and former Counsel to the Bristol Royal Infirmary public inquiry, and Sir Ian Kennedy, the former chairman of the Bristol public inquiry, who will act as consultant advisor. The Review will be independent and its terms of reference have been drawn up following conversations with the families affected.  The review will establish an office in Bristol and seek to ensure all interested parties have an opportunity to make a contribution.  The review team will issue a public call for evidence and make further announcements about how to get in touch as soon as possible. You can read the Terms of Reference here.

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8 comments

  1. Disinterester Bystander says:

    In light of the conversation below I should say upfront that I’m not involved with these particular services, and naturally anything I say will be interpreted in light of that, but, having followed the issue, I have a few comments.

    My main comment would be on the literature review. Obviously I accept that these people know more than I do, but the conclusion seemed to be based on the fact that not all studies showed an effect (although, notably, of those that did the effect was always positive), and of those that did, there was some overlap between outcomes and small, medium and large centres. My comment would be that with any study there is often a degree of noise around the signal and that if you only accept outcomes where there’s no overlap between the “intervention” and “control” groups (in this case the intervention would be larger surgical centres) then you potentially lose some benefit. The point about direct causation not necessarily being indicated is well made, however.

    Regarding the question of overall unit size, this is admittedly something of a moot point, as it’s hard to imagine that any of the threshholds mentioned in the studies won’t come out in the wash with the 4×125 standard, but the one area where it could lead to a missed opportunity is on the question of subspecialisation. The literature review seemed to suggest that the evidence for increased volume was stronger for individual procedures particularly for the Norwood procedure for HLHS. It’s clear that most British centres don’t do the number of procedures that the studies suggested were optimum, but this hasn’t been addressed in the standards.

    h ttps://nicor4.nicor.org.uk/CHD/an_paeds.nsf/0/7246282BB8516A3280257C77000BFDC5?OpenDocument?Benchmark

  2. I can absolutely clarify our position on this, and we do that again in our response to Johns letter in the attachment above. We work very closely with all families through all stages of a diagnosis of a single ventricle heart condition, including a lot of support and work with those families who sadly go through a bereavement. At no point have we stated or implied that this group should be excluded from the process, or that any service user, hospital or community team view should be treated as more important than others. Our view about the “wisdom of the crowd” being inappropriate for any consultation or decision on the new review process is people who have NEVER had any relationship with any element of cardiac services. The feeling from the last meeting was that this would be a consultation open to general public whose views would be encouraged and listened to even if they have had no relationship or involvement in cardiac services, and it is this that we are asking for clarification on. Little Hearts Matters encourages parent and patient participation as the key to ensuring that any service provision meets their needs. Suzie Hutchinson

    • Sue says:

      Usually on official consultation responses there will be question or series of questions which ask about who is making response and their relationship with the service.

      Your request to limit the right of people to reply to any consultation is unreasonable and goes against an open and transparent policy. If the consultation were to be limited then it would probably be open to legal challenge and could be deemed flawed and then we could have to go back to the drawing board yet again.

  3. Sue says:

    Thank you for that detailed and well written response to the Little Hearts Matter letter.

  4. M WAKER says:

    Two comments/questions:

    1. I have not seen any mention of the visit of the review team to Manchester Royal Infirmary – or have I missed something?

    2. During the visit to Manchester we were told that there would be some local meetings to hear the views of the public about the CHD review. Can you tell me when this might happen and where?

  5. In response to the National Charity letters highlighted above.
    It is clear from John’s response to Little Hearts Matters concerns, that NHS England may not have understood fully the questions and concerns that we were seeking clarification on from our letter sent at the end of last month. To further clarify our position we have written to John again. In the absence of an opportunity to highlight the letter here we have posted all three letters on our website http://www.lhm.org.uk/News/congenital-cardiac-review-417.aspx
    Suzie Hutchinson Little Hearts Matter

    • Sue says:

      Can Little Hearts Matter please clarify your position? Is the position of Little Hearts Matter that any parents or families of those that sadly passed away at their local hospital or on the way to the specialist cardiac services or at home without diagnosis should not have any input in the new review as they have no actual experience of cardiac care?

      The purpose of the new review is to cover the whole pathway of care.

      Personally I feel that your letters are extremely disturbing.