The new Congenital Heart Disease review: 40th update

Since the publication of this blog John Holden has left NHS England.

Your feedback

We’ve been asked whether NHS England can “look under the bonnet” of the independent report on our recent consultation – for example, can we see the detail of individual responses?  The answer is yes, we can. Our review team has already read every single response that came in, and if we need to refer back to the detail we will.   But the whole point of asking an independent company to produce a summary was to help us understand, objectively, what people were saying, drawing out the main themes and highlighting any significant issues. That’s why we will mainly refer to this report, rather than “looking under the bonnet” again ourselves.

Patients, families and their representatives

On 9 March we held a Joint Engagement & Advisory Meeting in London, to enable all of the engagement group members (patients, clinicians and hospital management) to discuss the report and start developing plans to move into the next phase of the review – in particular commissioning and implementation.

The meeting heard a presentation from Diane Beddoes, CEO of Dialogue by Design, who prepared the report on the consultation responses.  Attendees heard about the methodology for developing the report; a summary of responses to each of the questions posed in consultation; and illustrative quotes from respondents.

The meeting also heard updates from Jane Docherty and Ben Parker. Jane presented the findings of the group that has been looking at how to achieve better earlier diagnosis. There was a lively discussion; many in the meeting considered this to be one of the most important aspects of our work.  Ben presented a summary of all the types of information reporting that people would like to see developed. With so many possible areas for development, Ben is now trying to determine priorities and asked the meeting to help weight the proposals – telling us what was most important about measurements, that would help improve the service.

This was an excellent meeting – listening, developing and planning for the future service provision. Notes and the presentations from the meeting can be found on the ‘Engagement and Advisory Groups’ page.

Clinicians and their organisations

The Clinical Advisory Panel met on 10 February, shortly before the publication of the report summarising the findings from consultation. Panel members discussed the consultation process; emerging issues; their role in the governance and assurance process during the next steps; how to handle new evidence; concerns about the resilience of CHD service provision; network working; and how the service would be commissioned.  A draft note of the meeting, and the relevant papers, can be found on the Clinical Advisory Panel page.


Our Programme Director Michael Wilson also attended the Royal College of Nursing’s regular meeting for nurses specialising in congenital heart disease. He briefed the group on the results of the consultation. His slides are available on the ‘Other engagement, meetings and briefings’ page.

NHS England and other partners

Our Programme Board met on 18 February and discussed the review’s increased focus on how to commission the future CHD service. The Board also considered how the governance and assurance process would need to change, and looked at the challenging timeline, given the pre-election restricted period, and the aim of delivering the review’s final report to the July 2015 meeting, in public, of the NHS England Board. Papers on improved performance information (objective 5 of the review) and better, earlier diagnosis (objective 6) were presented to the Programme Board. Both papers were well received but the Board gave a clear steer that in each case the work would not be considered finished until there was a clear action plan agreed with relevant partners. A draft note of the meeting, and the relevant papers, can be found on the ‘Programme Board’ page.


The Programme Board met again on 23 March to review progress and discuss the programme of work over the coming months; the meeting papers can be found on the ‘Programme Board’ page. This was followed on 24 March by our Board’s Task & Finish Group. The agenda and slides for the meeting can be found on the Board’s Task and Finish page.

Notes from both of these meetings will be published via my next blog.


Michael Wilson recently attended NHS England’s Specialised Commissioning Oversight Group to brief them on the work of the review and to discuss how we work together ever more closely as we increasingly focus on commissioning the service. His briefing paper can be found on the ‘Clinical Advisory Panel’ page.

Next steps

In the lead-up to the general election (on 7 May), all public bodies have to take extra care in their work with the public and in what they publish – the principle being that nothing should be done that might affect the election.  So for a few weeks, we must limit our public activity and engagement.  I wanted to take this opportunity to let you know that I won’t be blogging, and there are no engagement meetings planned over the next few weeks.

Instead, we will focus on four areas of activity:

  • Understanding the consultation response and preparing for our joint Standards/ Clinical Reference Group due to take place shortly after the election. We will also prepare for a meeting of the Clinical Advisory Panel to follow shortly afterwards.
  • Preparing for the NHS England assurance process that will scrutinise our work before it can go to the main Board in July.
  • Developing our thinking on how the service will be commissioned. We are also supporting our provider engagement group, which is doing its own piece of work to see whether members can agree proposals for a CHD service delivery model to meet the standards.
  • Starting work on our final report to the main Board – there is still a lot of work to do to shape the final recommendations but it is not too soon to begin drafting some of the background.

After the election there will be a lot of work to do in a relatively short period – finalising the standards and specifications, ensuring our work passes through the assurance process as smoothly as possible, assessing the proposals for delivery models, finalising our plans for commissioning and bringing everything together for consideration by the NHS England Board in July 2015.

Before then we expect to have one more joint meeting of our engagement groups to bring everyone up to speed…. watch this space for details.

Happy Easter!

All the above documents can be found on our archived website.

John Holden was previously Director of Policy, Partnerships and Innovation, since the publication of these blogs he has left NHS England.


  1. Toby Reynolds / Lorena Fernandez says:

    Urgent! Can John Holden or his PA get in touch with us asap? We need help today around an EQUIPT submission.

    Thanks in advance!

  2. Sue says:

    Is NHS England applying a different set of principles to itself?

    Verita Recommendation 16:

    NHS England should publicise the fact that all cardiac units in the UK undertake sufficient numbers of operations for safety, as currently measured. This should help reassure families that their children are not being treated in units with sub-optimal numbers.

    The group endorsed the proposals described in the paper and agreed that it would not be possible for NHS England to comply with recommendation 16 as there was no evidence base to support a view on what constituted ‘sufficient numbers of operations for safety’. Nonetheless, patients could be assured that the outcome data provided by NICOR provided a strong degree of assurance of the safety services in England.’