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The new Congenital Heart Disease review: 24th update – John Holden

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Thank you for your continuing support and feedback. We are very conscious that the success of this review relies on active engagement from all its stakeholders, some of whom – I know – feel that it wasn’t needed in the first place, or should have been resolved sooner.

We have now almost completed our series of visits to specialist units. We’ll provide a write-up in due course, but what is already clear is the passion and commitment from everyone working in the service, wherever they are. Visiting the units has also given us a further chance to meet some of the patients and families who use the congenital heart service, and to hear their stories about what works and what could be even better. This is a service which – just like it says in the opening words of the NHS Constitution – “works at the limits of science – bringing the highest levels of human knowledge and skill to save lives and improve health”. But it’s also a service that faces challenges, and on which there is legitimate debate about the best way to respond.

When we consult on a draft set of standards and service specifications, we will be giving everyone the opportunity to comment. Many of the issues raised in our visits, in correspondence, and in response to previous blogs, will be covered by the consultation – for example whether there is an optimal size of unit (number of surgeons and cases per year), which has been the subject of recent blog comments. We will do our best to make sure these issues have been covered, and the rationale for a draft standard has been clearly explained in the consultation. And we look forward to your views.

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 copy of the slides used is available here and a summary of the key points from the workshop will be available soon.

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

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On 17 June 2014, NHS England’s Patients and Information Directorate are holding their second “Open House Day” between 10am and 3:30pm at 4 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 the Patients and Information Directorate’s 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, continues her programme of visits to the specialist centres around the UK – most recently to Birmingham (19 May 2014) and Bristol (20 May 2014). After 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 Provider Group (Chaired by Chris Hopson) took place last week on 21 May 2014 in central London. A copy of the agenda is available herea copy of the slides used is available here and a note of the meeting will be available shortly.

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The next meeting of our Clinicians’ Group (Chaired by Professor Deirdre Kelly) is scheduled for Monday 2 June 2014 in central London.

NHS England and other partners

On Wednesday 9 April 2014, Michael Wilson and Dr Mike Bewick – NHS England’s Deputy Medical Director, representing Professor Sir Bruce Keogh – met MPs & peers (members of the House of Lords) at the House of Commons to provide an update on the work of the review, and also to answer questions from those in attendance. A write-up of the meeting is available here.

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On 29 April 2014, Michael Wilson attended a meeting of the NHS England’s Women and Children Programme of Care (PoC) Board. There are five national PoCs, which have been designed to oversee individual service areas in five functional groupings. The national Women and Children PoC covers services for women and children, including congenital and inherited diseases; this relates to both specialised and highly specialised services, including surgical and medical services. A copy of the paper presented is available here and the relevant extract of the draft minutes of the meeting is available here.

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On 30 April 2014 I, along with our lead analyst Jo Glenwright, attended a meeting of NHS England’s Clinical Priorities Advisory Group, whose scope includes all services directly commissioned by NHS England. The Group includes external representatives (for example Public Health England), and has an independent chairman, and its core role is to make formal recommendations to NHS England’s Board on the commissioning of services where there could be a substantial change in service provision. A copy of the paper presented is available here and the relevant extract of the minutes from the meeting will be available soon.

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One comment

  1. Michelle Elliott says:

    My comment is with regards to remarks made by Stuart Andrew at the meeting with Michael Wilson and MP’s.
    I think it is about time that Mr Andrew refrained from taking cheap ‘shots’ at the families involved in the Family Report and Mortality Report released a couple of months ago! As an MP one would expect that he respects the professional views of those involved in the report. Leeds Trust apologised, NHSE apologised so WHY does he continue to DIG at these families? Even during a meeting with his fellow MP’s he is having a go. Let’s face it NHSE – whatever decision you make on how children’s heart services move forward – unless his own unit is not included he will NEVER allow or agree your process! Until death/ serious injury affects anyone on a personal basis you will never know what we are living through. Do us all a favor Mr Andrew and SHUT UP.