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The new Congenital Heart Disease review: 21st update – John Holden

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In response to interest expressed by all three of our engagement and advisory groups (Providers, Clinicians and Patient & Public), we are planning to organise a joint meeting of these groups and the review team are currently working to find an acceptable date for this meeting. We will let you know as soon as this is confirmed.

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Thank you (again) to everyone who submitted documents and references in response to our “call for evidence”. As promised, we passed all your submissions on to the team at ScHARR who are conducting the literature review for us.

On 1 April 2014, ScHARR submitted their draft report detailing their methods and findings. This is a DRAFT report, fresh from their office and is yet to go through quality assurance and peer review, and is therefore subject to change – so please bear this in mind – IT IS NOT A FINAL DOCUMENT. However, we wanted to share it with you now. The report can be found here.

The papers included in the review can be found in Section 4 (page 30). The list of papers suggested by our Clinical Advisory Panel and stakeholders via this blog, and whether or not they were included, can be found in Appendix 2d (page 78). Many of the papers suggested that were included ScHARR had also identified; most of the additional suggested papers were excluded. ScHARR set their inclusion criteria and applied it systematically and independently.

If you have any comments, please email them to england.congenitalheart@nhs.net. Comments received by the end of Monday 14 April 2014 can be fed back to inform the quality assurance process.

Patients, families and their representatives

Our Patient and Public Group (chaired by Professor Peter Weissberg) met on 27 March 2014 in central London. In response to what we heard at the previous meeting of this group (10 February 2014) we invited along John Stewart, Director, Quality Framework, NHS
England, Nigel Acheson, Regional Medical Director (South), NHS England and Ted Baker, Deputy Chief Inspector, Care Quality Commission CQC to join a discussion on how we manage real time concerns about safety and quality. The slides used at the meeting are available here, and a write up of the meeting will be produced shortly.

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The first in our series of engagement events with children and young people that we have scheduled during the Easter Holiday period (7 April 2014 – 17 April 2014) is taking place today. As a reminder the dates and venues are:

  • BIRMINGHAM: 7 April 2014: Room 127, Aston Conference Centre, Aston University, Aston Triangle, Birmingham, B4 7ET
  • LIVERPOOL: 8 April 2014: The Engine Room, Haigh Building, Liverpool John Moore’s University Student’s Union, Maryland Street, Liverpool, L1 9DE
  • LONDON: 9 April 2014: Meeting Room 3A, University of London Union, Malet Street, London, WC1E 7HY
  • BRISTOL: 10 April 2014: Activity Room 11, University of Bristol Students’ Union, The Richmond Building, 105 Queens Road, Clifton, Bristol BS8 1LN
  • SOUTHAMPTON: 11 April 2014 2 Space, University of Southampton Students’ Union, Building 42, University Road, Southampton, Hampshire, SO17 1BJ
  • LEEDS: 14 April 2014 – Leeds University Union, University of Leeds, Leeds
  • LEICESTER: 15 April 2014: Queen’s Hall, Percy Gee Building, University of Leicester Student’s Union, University Road, LE1 7RH
  • NEWCASTLE: 16 April 2014: The Main Hall, The Discovery Museum, Blandford Square, Newcastle Upon Tyne, NE1 4JA
  • CAMBRIDGE: 17 April 2014: Cormack Room, University Centre, Granta Place, Mill Lane, Cambridge, CB2 1RU.

If you are already registered to attend and want to ask anything at all, or would like to attend any of the events but are yet to register, please contact the review team by emailing: england.congenitalheart@nhs.net or calling 01138248232.

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As you will know one of the new CHD review’s objectives is “to improve antenatal and neonatal detection rates”. As part of this work we want to ensure that we are speaking to any local / national groups with a specific interest in this area. Through the membership of our Patient and Public Group we are already aware of at least one group which falls into this category, but would ask that you please do let us know if we should be talking to your group / you know a group that we should be contacting either by leaving a comment on the Blog or emailing us at england.congenitalheart@nhs.net.

Clinicians and their organisations

On Friday 4 April 2014 I attended a national meeting of critical care managers to provide an update on progress of the review. 12 different Trusts were represented at the meeting, along with 2 transport / retrieval services. I attended the meeting with Jane Docherty, another member of the review team and the slides I used are available here.

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A meeting of the Clinicians’ Group took place today (7 April 2014) – you can jsee a copy of the agenda here. A write up of the meeting will be produced shortly.

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In my last two blogs, I told you that Professor Deirdre Kelly, Chair of the Clinicians’ Group, has offered to visit Trusts currently providing congenital heart surgery, accompanied by members of the review team. At that time we had secured dates for all but one Trust. I can now confirm the following date:

  • Central Manchester University Hospitals NHS Foundation Trust: 15 April 2014

A few people have asked us if patients, their families and any local groups that attend the relevant part of these Trust Visits can claim their travel costs. I can confirm that NHS England will reimburse any reasonable travel costs incurred through attending these events following completion of a claim form.

NHS England and other partners

There is a meeting on Wednesday 9 April 2014 between our review team and MPs & 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. We will present a short slide presentation and produce a write up of the discussion which I will make available through the next Blog and on our webpages.

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The next meeting of our Board Task and Finish Group is scheduled for 15 April 2014 and we will publish the agenda and papers for this meeting as soon as they are available.

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The next meeting of our Programme Board is scheduled for 16 April 2014 and we will publish the agenda and paper

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One comment

  1. We have been asked: What does a good consultation look like?

    It is framed to produce meaningful outcomes which will achieve a supportive narrative for the best solutions

    In other words, give weight and context to contributions before applying them to solutions.
    The context – NHS E has said that everyone is a stakeholder, but the stake for some is their career, for others ambition for the future service. For families it may be retaining their links with a cardiac team, for others it may be wanting the best possible care for the future.
    For local areas it may be bringing in prestige and investment, or wanting to see their service publicly acknowledged as the best. For some families it may be the fear that they will have to acknowledge that they made a poor choice when selecting a surgical unit for their child’s care.

    The final question to ask consultees is ‘Why do you say that?’