The new Congenital Heart Disease review: 39th update

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

I am pleased to announce the publication of the independent report Consultation on draft standards and service specifications for the congenital heart disease service which has been produced by Dialogue by Design. The report has been published on Dialogue by Design’s website.

This is an important step in our work to develop standards to improve outcomes, reduce variation and improve patient experience for people with congenital heart disease. It will help NHS England and all our stakeholders to understand what matters most to the people who responded and will help us to ensure the standards are the best we can make them.

I should also make clear that the report sets out only what we have heard as a result of the consultation.  It does not tell the final story of what the standards and specifications will look like.  That will be the focus of the next part of our work. I’ll say more about that later.

What is the report about? 

The consultation ran from 15 September to 8 December 2014. We received 459 responses, and – as we said from the start – everyone’s opinion counted.  As a result, in order to be sure that the report properly reflects all the many views expressed, it is quite long.   I know that will be more than some people want to read, but the authors have included a very useful summary at the beginning, before diving into the detail from the twelve questions we asked, and anything else that people wanted to tell us.

What does the report tell us?

Lots of people sent in responses offering thoughts, comments and advice, and I would like to say a personal thank you to everyone who took the time to do so.   Although the analysis and report is from an independent company, our CHD review team has also read – between them – every word of every response, and we were taken aback by the level of detail and careful thought.

  • Views on the standards are broadly positive. Many people think they will promote high quality, accessible, patient-centred care. That’s good news.
  • What’s also very helpful is that most people also share their thoughts on alternative approaches, identify specific advantages or concerns with particular features of the proposals, or describe principles that they consider should guide the implementation of the standards.
  • Naturally not everyone agrees with all the proposals.   Many of the concerns focus on the challenges of implementation, particularly adequate funding and staffing. Some people are concerned that the standards do not include all of the potential issues of CHD care.
  • Although we can see that most people support the proposed model of care, and the various areas of the standards we asked about, the answer to Question 1 is harder to interpret. People were divided in their opinions about whether the draft standards would meet the review’s aims, with similar numbers thinking they would, as thought they would not, and with a slightly smaller number not being sure. The explanations given in the next part of the question suggest that this may be for a wide variety of reasons, including concerns about how the standards would be implemented, rather than the standards themselves.

All the responses will have an impact on the review, as what we have heard will make us reflect and look carefully at our proposals.

How will the report be used?

The report gives us masses of information, which will help us to finalise the standards and specifications.  We are sharing the report now so that everyone has the chance to understand the views that have been expressed.

The next bit of the process is complicated because we have a lot of hurdles to clear as part of our robust governance procedures (but for those who have been following our work for a while, it will be familiar, as it is similar to the run up to consultation).

We plan to ask the Clinical Reference Group, working with members of the two standards groups (one worked on standards for children, the other on standards for adults) to review the report, deciding if any alterations need to be made to the standards and specifications. Their advice will then be considered by our Clinical Advisory Panel which will also consider the broader messages from the consultation, and will make recommendations to the review’s Board Task and Finish Group.

After this the proposals will be considered by the various groups that make up the Specialised Commissioning assurance process, prior to final decisions being made by the NHS England board in the summer. The opportunity to consider the points made in consultation in this way and to respond, is really the whole point of the exercise. We believe it will make the standards and service specifications even better.

Some of you will be aware that last week we postponed the meeting of Clinical Reference Group with the standards groups.   We took this step because at the time we had not received the independent report, and so we were not able to complete the necessary preparation for the meeting. It’s also the case that, quite appropriately, there are restrictions on what all public bodies, including NHS England, should do during the period leading up to a general election. We have therefore decided to rearrange this meeting after the election, when we are able to engage with stakeholders and work as openly and freely as we normally would.

We will try very hard to ensure that this pause does not cause any significant delay in the completion of our work. We will be busy preparing for our spring and summer meetings, when we plan to undertake the assurance and governance process outlined above, and working with specialised commissioning colleagues at NHS England to develop our thinking about how to commission the service in future to make sure that the standards are met.

On the 9 March 2015 – we will be holding our Joint Engagement and Advisory Meeting in London, which will enable all of the engagement group members to discuss the report and start developing plans to move into the next phases of the review – commissioning and implementation.

A copy of the agenda is now available.

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

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  1. Disinterested Bystander says:

    Will NHS England be able to look under the bonnet of the report (for example seeing responses that haven’t been included, seeing what kind of responses came out of different areas)?