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The new Congenital Heart Disease review: 26th update – John Holden

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We had a lively discussion at our Patient & Public Group Meeting on 13 June 2014, which began with a robust challenge from some attendees about current quality in surgical units, the accessibility of public & patient meetings, and the nature and breadth of our planned consultation. This sort of encounter can be uncomfortable, but it is a legitimate and important part of our accountability. There was one issue, however, which I wanted to highlight here because it gets right to the heart of the way we run our process: Why don’t the review team respond to what they’re told?

I disagreed with the assertion that we are unresponsive. It’s not supported by the evidence of our approach over the last year, including 26 blogs, every one of which starts by detailing what we have heard and what we have done about it. In this context, I would like to draw your attention to the paper here that we presented to the recent Clinical Advisory Panel meeting – almost 40 pages explaining exactly what we have heard about the draft standards, chapter by chapter, from which audience, and what we have done about it. I think this paper exemplifies what we do, and the inclusive approach we have taken.  I am very proud of the work the review team has done to support the extensive and unstinting efforts of so many contributors to the review.

Patients, families and their representatives

The Patients & Public Group meeting described above (chaired by Professor Peter Weissberg) took place on 13 June 2014 in central London. A copy of the agenda is available here, a copy of the slides used is available here and as always a note of the meeting will be available in due course.

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Although the Clinical Reference Group (CRG) for Congenital Hearts Services has a full complement of patient and carer representatives, there are still some CRGs who have not filled all their available places. Therefore NHS England is running a process to continue to recruit patients and carers to those CRGs with vacancies. More information can be found here including a full list of CRGs who are still recruiting members. The operation of the CRGs is separate from the new CHD review process and we have no role in appointments to CRGs.

Clinicians and their organisations

Our Clinical Advisory Panel (CAP) met on 18 June 2014, and the agenda and papers for the meeting are available here. A note of the meeting will be available in due course.

NHS England and other partners

Our Board Task and Finish Group met on 23 June 2014, and the agenda and papers for the meeting are available here. A note of the meeting will be available in due course.  The Group considered a range of issues but the core of the meeting was discussion of a DRAFT paper entitled “One Year On”, which details our progress against each of the review’s six objectives and outlines next steps. This paper, with any necessary amendments, will be tabled as part of the Group’s regular update to the meeting in public of NHS England’s Board, which takes place in Birmingham on 3 July 2014.  All Board papers for the 3 July 2014 meeting will be published on the NHS England website once finalised.  You can view the Board papers, request a place to attend the meeting, watch a live stream over the internet, and view the videos of previous meetings, on the NHS England website.

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MPs and peers (members of the House of Lords) ask questions of health ministers, and the answer (or the transcript when there is a debate) is published in Hansard.  Here is a link to a recently answered question (10 June 2014)  that relates to the work of the new CHD review.

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4 comments

  1. Leslie Hamilton says:

    It was with great sadness and frustration that I read the recently published paper from NHS England about yet another review of paediatric cardiac surgery: “Investigating Concerns Over Children’s Cardiac Surgery in Bristol:
    Terms of Reference for the Investigation”.

    The main thrust of the recommendations in Sir Ian Kennedy’s report in 2001 was the need for larger centres – not only would they have bigger (more sustainable) teams doing a larger volume of cases (shown in your recent ScHARR literature review to lead to better outcomes in the rarer, more complex cases) but they would have the throughput to justify the necessary, properly staffed (a larger pool of nurses) facilities in the form of high dependency and intensive care units.

    There is a terrible irony in the possibility that the main conclusion from this new review 13 years later might well be the need for a larger centre.

    • Sue says:

      Since the 2001 Kennedy report all the current 10 centres currently undertaking children’s heart surgery have become substantially larger. In fact the total number of patients undergoing surgery and interventional procedures has doubled within that time. It is important to not only concentrate on the role of the full cardiac surgeons, as the role of the interventional cardiologists now has equal importance. The role of the interventional cardiologists has grown enormously since 2001 as technological advancements have enabled more patients to be treated with less invasive procedures. I am sure that every parent and child would rather have an interventional procedure than full heart surgery. In a few decades, with all the technological advancements, a lot more of the work of the cardiac surgeons will be undertaken by the interventional cardiologists. This does not mean that there will be less patients and therefore we will need less facilities or indeed that we need fewer bigger centres. It means we need different types of facilities together with a very different staffing profile.

      In my opinion one of the biggest failings on the old Safe and Sustainable review was that it did not give equal importance to the numbers of patients who undergo interventional treatment together with the increasing numbers of adults living with congenital heart conditions.

      The issues at Bristol are the same issues which affect practically all of the NHS and many workplaces throughout the country. A truly independent review would probably come to the conclusion that during the course of trying to make economic savings corners were cut and therefore the quality of the service was compromised. In addition less funds for training and higher university fees for younger people wanting or being able to enter the profession and lack of increases in basic pay for those already in the profession are the route of all problems. These issues are not solely applicable to the congenital heart services and I am sure many can relate to this both in other services inside and outside the NHS.

      The congenital heart services have changed vastly since my child was born and they will continue to evolve further in the years ahead. Instead of planning for yesterday, we have to plan for tomorrow. Experience is respected but with youth comes a fresh pair of eyes and a fresh vision for the future. The congenital heart services need both experience and youth. No one is ever too old to learn. The young can learn from the old and the old can learn from the young.

  2. Disinterested Bystander says:

    One of the documents mentions the need for “intelligent commissioning” to preserve a centre that might otherwise struggle to bring in the numbers to meet the standards. Rather than just assigning the numbers required, ways of “nudging” families in a particular direction could offer at least a partial solution to this problem. The shortest journey time centre is sometimes different for public transport users than driving, and that includes both those families that don’t have easy access to a private vehicle and therefore purely or mostly use public transport, and those who could potentially use a train station (even a relatively distant one) effectively as a Park and Ride. Where centres are close in journey times for those families, offering a free or heavily subsidised rail plus taxi scheme attached to a particular unit could encourage them in that direction.

  3. Sue says:

    Just wish to highlight this comment

    “We heard that most emergencies are arrhythmias. Some difficult arrhythmias might need the ability to bring in a full highly skill team out of hours to diagnose and manage with interventional techniques.”

    I really hope that during this new review this comment is taken seriously. It is extremely important that the wording of the new standards is considered very carefully. The effect on this patient group could be extremely dramatic if the standards are worded inappropriately.

    Those advising or creating the wording should consider

    (a) what patient ages and groups are currently allowed access to which service

    (b) what effect it would have if access was significantly reduced and

    (c) the differences between retrieval and outcomes in a major cities and that of more rural areas.