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The new Congenital Heart Disease review: 22nd update – John Holden

Your feedback

Following discussion in our engagement events and notes in the blog, thank you for your comments on “what does a good consultation look like?” Please continue to share your views on this with us; you can do so either by posting your comments on the blog or alternatively by emailing the review team at england.congenitalheart@nhs.net

Patients, families and their representatives

Over the Easter holidays we held nine separate engagement events across the country for children and young people who use congenital heart disease services, so that their experience and insights can help us to shape the service. We’ll do a proper summary of what we’ve heard, but in the meantime here are a few headlines:

  • young people want doctors and nurses to talk to them and not just to mum and dad;
  • they want to understand what’s going to happen but not be scared by it;
  • they would really like Wi-Fi as they are dependent on devices to entertain them when they have had surgery;
  • everyone wants to improve transition so that the move from children’s to adults’ services is smoother;
  • children and young people have often made really good friends in hospital so – despite everything – they can see a positive side to being an in-patient.

We have also been listening to mums and dads who attended our events (and brothers and sisters, grandparents and cousins) to understand what makes a difference when a child is in (or expecting to go into) hospital. Amongst other things they want better networking between different parts of the system, and improved communication – this is fundamental for parents who feel they are the only ones in the system who know about their child.

We have developed a parental feedback form which you can find here – parental feedback form. We are using this alongside the engagement events to collect the views of children and young people. The form describes includes a number of areas that we would like to explore in relation to the standards of care that are being developed. There is also space for people to add any comments or thoughts they want us to hear about congenital heart disease services. Please send any completed forms to the new CHD review team at england.congenitalheart@nhs.net. If you attended one of our events and don’t think we have your email address, please do email us and we will make sure that you get details of future events and activities. Likewise if you know someone who might be interested in the review, please let them know they can email us to be added to the database: england.congenitalheart@nhs.net

Clinicians and their organisations

A meeting of the Clinicians’ Group took place on 7 April 2014 and a copy of the slides used at the meeting is available here – Clinicians group slides. During the meeting we explained that specialist in-patient activity for congenital heart disease has increased over time but the increase varies across the country. We asked the clinicians the following questions:

  1. What are the drivers of this change?
  2. What do we expect these drivers to do in the future?

You can read what they told us here – Clinician advice

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Professor Deirdre Kelly, Chair of the review’s Clinicians’ Group, and Michael Wilson, Programme Director, have started their visits to the Trusts that are recognised as specialist centres. To date, three visits have taken place: Oxford, Manchester and Alder Hey.

The visits are an opportunity:

  • to update the clinical teams and patients and parents about the review,
  • for Trusts to explain how their Units function, what they are proud of and how they are facing their challenges; and
  • to listen to staff and patients as they describe what a good service looks like, to ensure that the standards reflect what we are being told.

When all the visits are complete the review team will collate what they have learnt and will produce one consolidated account of our visits.

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. You can see the slides from the meeting here – Update for MPs and Peers and a write-up of the meeting will be available shortly.

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We are hosting a WebEx on 29 April 2014 for Local Government and Healthwatch organisations. Details have been shared throughout Local Government and Healthwatch bodies. This WebEx will provide an opportunity to update participants on progress so far, to outline next steps, and provide an opportunity to ask and answer questions. A recording will be available afterwards (with a link in this blog).

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Our Board’s Task & Finish Group met on 15 April 2014. The agenda and papers from the meeting are available here – Task and Finish Group agenda and papers.  A note of the meeting will be published when it is available.

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Our Programme Board met on 16 April 2014. The agenda and papers from the meeting are available here – Programme Board agenda and papers. A note of the meeting will be published when it is available.

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One comment

  1. Eric Charlesworth says:

    I have a meeting Thursday evening with Consultants, Charities Local Authorities et . had hoped to be able to present the meeting WeBEx of yesterday. Have the slides yet been put on the web ? if so how is the connection.
    Many Thanks

    Eric
    P.S although it seemed a poorly linked into number of participants, i thought it was an excellent presentation.