Your feedback

During the Trust visits carried out by Professor Deirdre Kelly and members of the review team, questions have been asked about the scope of our work and the way in which different aspects of the service are being taken into account. I thought I would take this opportunity to provide some clarification.

In terms of acquired heart disease I can confirm that specialist inpatient and outpatient care for babies, children and young people with acquired heart disease is in scope for the review.

The specification for heart transplant (and bridge to transplant services) for children and young people is not part of our work because this is covered by a separate Clinical Reference Group (Heart and Lung Transplantation) and more information about this group can be found here. Although our review is not setting standards for transplant services, we do intend to develop protocols for access and referral to these services. This work has not yet started. At present we are focused on developing consistent standards that will apply to all units, and not on any changes this may require amongst the hospitals that provide these services. However, if in future changes are considered necessary, any decisions would of course need to take into account the impact on other linked services such as heart transplantation.

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Though we are not yet consulting on draft standards, we have been asked if they are available to view in their current form. The draft standards were considered by our Clinical Advisory Panel (CAP) at its meeting on 31 March 2014. The papers were published on our meetings page However, for your convenience I have added links to the relevant papers below:

• Cover paper
• DRAFT Standards: Tier 1: Specialist CHD Surgical Centres
• DRAFT Standards: Tier 2: Specialist (Children’s Cardiology/ACHD) Centres
• DRAFT Standards: Tier 3: Local (Children’s Cardiology/ACHD) Centres

The standards will be on CAP’s agenda again at its next meeting on 18 June 2014 when they will consider what has been heard during our pre-consultation engagement period as well as a variety of other evidence (including the literature review), before signing off the version for consultation. Further changes are therefore possible. The standards will be subject to three months’ public consultation, which we currently expect will start at the end of July. So there will be an opportunity for everyone to have their say, and I very much hope you will take the opportunity during consultation to review the standards and let us have your views.

Patients, families and their representatives

The review team hosted a WebEx (internet-based discussion with slides, commentary and discussion) on 29 April 2014 for Local Government and Healthwatch organisations, to update participants on progress so far, to outline next steps, and provide an opportunity for participants to ask questions. The agenda is available here and the slides used are available here. You can access a recording of the WebEx via the following here. For technical reasons the link is only available until 28 May 2014; we are working to ensure that this recording will be available (via a different link) after 28 May 2014.

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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. We will publish the slides we used for the meeting and will summarise the key points from the meeting.

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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.

Clinicians and their organisations

Professor Deirdre Kelly, Chair of the review’s Clinicians’ Group, along with members of the review team, has now completed around half of the planned visits to the specialist centres around the UK – most recently to Southampton (30 April 2014), Brompton and Guy’s and St Thomas’ (2 May 2014), Newcastle (7 May 2014), and Leeds (9 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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The next meeting of our Provider Group (Chaired by Chris Hopson) is scheduled for Wednesday 21 May 2014 in central London.

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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

Our Clinical Advisory Panel met on 31 March 2014. You can find the agenda and papers here.

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On 7 May 2014, the UK National Screening Committee (part of Public Health England) announced the outcome of their consultation on the effectiveness of pulse oximetry – they have decided to improve the evidence base by conducting a one year study of pulse oximetry screening on newborns in six areas of the country. View the announcement on the gov.uk website.  The announcement is receiving some media interest, for example: The Telegraph ‘All newborns to undergo heart tests’

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Our Programme Board meets on Tuesday 13 May 2014, and the agenda and papers for the meeting are available here.

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NHS England’s Board will hold its regular meeting in public on Thursday 15 May 2014 in London. One of the items to be considered is the routine update from Board Committees, including the new CHD review’s “Task & Finish Group”. A copy of the relevant Board paper is available here. A video recording of the discussion will be available shortly afterwards on the relevant section of the NHS England website.