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The new Congenital Heart Disease review: 27th update – John Holden

Your feedback

We’ve been asked about feedback from the Trust visits (led by Professor Deirdre Kelly, at the invitation of the Clinicians’ Group) and whether there will be a write-up on individual units. The answer is that we will not publish any commentary on individual units, nor will we use the visits to drive decisions about individual units. But we have drawn on this experience, along with a wealth of other evidence and expert opinion, to help shape the draft standards on which we plan to consult.

Linked to this point, we’ve been asked whether we have plans for “local meetings” as part of the review, in particular to hear the views of the public. The first thing to say is that we have already done some local meetings open to the public – nine children’s and young people’s events around the country, and around a dozen visits to specialist units with a few more planned (see below). We are considering the level of face to face engagement the review team should do as part of our consultation on standards, and I expect this will include a small number of regional events. But it’s neither feasible nor cost effective for us to do an extensive roadshow around the country. Instead, we want to support local units, charities and patient groups by providing materials and input to run their own local events, if they would find that helpful. And we intend to make good use of the internet to continue to share as much information as possible, as widely as we can.

Patients, families and their representatives

A meeting of our Patient and Public Group (chaired by Professor Peter Weissberg) took place on 12 June 2014 in central London and a draft note of the meeting is available here.

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Some families missed out when the review team visited Bristol recently; Michael Wilson (our Programme Director) and Jane Docherty (Project Manager) will meet them on 7 August.

Clinicians and their organisations

As I mentioned in a previous blog, at a recent meeting of the Clinicians’ Group, Professor Kelly received additional invitations to visit other units in the UK performing CHD procedures. Visits to Papworth (15 August) and Blackpool (date tbc) are currently being planned, and one or two others may follow. We will keep you posted.

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A meeting of our Provider Group (chaired by Chris Hopson) took place on 21 May 2014 in central London and a draft note of the meeting is available here.

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A meeting of our Clinicians’ Group (chaired by Professor Kelly) took place on 2 June 2014 in central London and a draft note of the meeting is available here.

NHS England and other partners

Our Programme Board met on 10 June 2014 and a draft note of the meeting is available here. The Programme Board’s next meeting is scheduled for 28 July 2014 and the agenda and papers will be published as soon as they are available.

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NHS England’s Board held its regular meeting in public on Thursday 3 July 2014 in Birmingham. One of the items considered was the update from new CHD review’s “Task & Finish Group” which included an Annex entitled “One Year On” which details our progress against each of the review’s six objectives and outlines next steps. A copy of the relevant Board paper is available  here. A video recording of the discussion will be available shortly on the NHS England website.

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As we continue our comprehensive data analysis (objective 2) and move towards consulting on standards (objective 1), we also need to step up the work on commissioning and change (objective 4). Alison Hughes, who previously led a large Commissioning Support Unit, has now joined the team to lead on this objective. We are also very pleased to welcome Ben Parker, who brings financial and other skills to the team.

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One comment

  1. Sue says:

    I have to agree with concern about the additional sessions expressed by John Holden in the highlight report.

    The criticism about individuals being unable to make the patient and public meeting very strange. Surely each of the charities which represent their individual areas have at least one person who works with or closely to their charities or a parent who is prepared or able to attend the meetings. Everyone naturally understands that on occasions circumstances will dictate that some will be unable to attend but given the volume of patients treated in each area I find it hard to believe that no one is able to attend most of the meetings. Have those areas asked the parents or patients for direct volunteers? The skills needed are common skills within lots of professions and I am sure that there are many who possess the skills needed in each individual part of the country.

    The one thing that strikes as being even stranger is that some national charities have complained that some of their members feel that their views are not being heard. Surely any national charity which is either attending the public and patient groups or has a key figure who works for that charity on the clinical reference group should be representing their members. This seems to be a communication issue between those charities and the individual members which they represent. Perhaps they need to take internal action to resolve the issue. It is hypocritical to complain about communication issues in the congenital heart services if those same communication issues are prevalent within the charities themselves.

    The face to face meetings are important. They help people to understand the different views which are being put forward. A major problem occurs when people are unwilling to listen to and understand other views. The continuing absence from the patient and public meeting of representatives from certain areas is a major concern. They appear to have disengaged themselves from the process.

    For those who are not confident in public speaking there are ways of passing comments, either privately or publicly, to the review team. The option to contact representatives who are attending the public and patient meetings and the patient and carer members of the clinical reference group is another way to ensure views are heard.