The new Congenital Heart Disease review: 3rd update

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

Your feedback

Thank you, once again, to everyone who has taken the trouble to provide feedback, either here on the blog, or elsewhere.    We are very grateful for all of your comments.  There have been three broad themes emerging from recent feedback:

  • What is the scope of this new review?
  • Why does NHS England wish to talk to certain stakeholders?
  • What happens to comments received in response to the blog?

Some people have asked about the scope of this review: which services are in and which are out? The review will consider the whole lifetime pathway of care for people with congenital heart disease (CHD), to ensure that services for people with CHD are provided in a way that achieves the highest possible quality within the available resources. But that does raise questions about other linked services and specialties, different NHS organisations, which stakeholders to involve, and so on.  We have to strike a balance between a review which is too narrow to make sense of the dependencies, versus one which is too broad to ever reach a conclusion.  The more detailed definition of scope will be a question we test during this initial period of engagement.

Many of those who commented on the last blog wanted to know why we invited the Children’s Heart Federation (CHF) to a meeting.  CHF is a national charity which represents children and families affected by congenital heart disease.  As such, it is important that we hear their views along with other national charities.  But that does not mean they, or anyone else, have special access or influence.  We know that some families do not want to be associated with CHF.  The same has been said about other charities.  We respect that opinion.  But – when we convene a meeting, we are not passing a judgement about which charities best represent people.  We do not assume that one body speaks for all, or that everyone’s opinion can be heard by talking to representatives.  We try to get all the most relevant groups in the room.  NHS England wants a comprehensive and inclusive debate, and that is bound to include a range of groups, with a range of views, national and local.  We are focused on the needs of children and adults with CHD, so we will continue to talk to local and national stakeholders, and anyone else who can help us with this work.  We will make a particular effort to reach out to minority groups and those who are not always sufficiently heard, including children and young people with CHD.   We know that some national groups missed out on the first meeting of national charities. Despite our best efforts we may not be aware of every relevant stakeholder group, and those who wish to register an interest in future meetings should do so – the lists are not closed!   Please contact Hannah Weaver. Our intention is to work with stakeholders to find the best way for them to communicate and participate.

Finally, some people have asked why comments posted on the blog do not appear immediately, and whether comments are “vetted”.  NHS England’s approach is that we publish all comments received, whether complimentary or critical, unless they break our policy, which you can read here.  If someone asks a specific question, there may be a delay while the moderator of the NHS England website considers the possibility of an answer (to be posted alongside the question).  Otherwise, we aim to ensure that comments are published straight away.  In general I will not reply to individual comments on this blog, so I would not expect there to be any significant delay.

Patients, families and their representatives

On 16 July we met representatives of national charities and patient groups.  The main points from the discussion are set out at the end of this blog.


On 19 July I met Councillor John Illingworth from Leeds City Council, to discuss a number of his outstanding Freedom of Information requests, relating to the “Safe and Sustainable” process.  NHS England has inherited responsibility for managing these requests.


We have scheduled a meeting with local charities and patient groups, to be held in central London on 7 August.   Those charities and groups who have been invited are:

  • Amelia Matters (Wales)
  • BHF
  • Bristol Inquiry (Bristol)
  • Children’s Heart Association (North West England)
  • Children’s Heart Support Network (Wessex)
  • Children’s Heart Surgery Fund (Yorkshire)
  • Children’s Heart Unit Fund (Newcastle)
  • ECHO – (London)
  • Elyon’s Heart Foundation (Bedford)
  • Families of Ocean Ward (Southampton)
  • Fragile Hearts (Yorkshire)
  • GOSH (London)
  • hearts4teens (Manchester)
  • Heart Link (Leicester)
  • Keep the Beat (Leicester)
  • Lagans (Liverpool and the North West)
  • North Devon Heart Babies (North Devon)
  • The Ben Williams Trust (London and the surrounding areas)
  • The Brompton Fountain (London)
  • Young at Heart (Birmingham)
  • Young Hearts (Oxford)

If your organisation represents local people with congenital heart disease, and is not listed here, but you would like to attend the meeting, please contact Hannah Weaver.

Clinicians and their organisations

On 16 July we met representatives of national professional organisations; some joined the meeting by phone.  The main points from the discussion are set out at the end of this blog.


On 22 July we met clinicians from each of the 10 centres currently providing children’s congenital heart surgery, plus representatives from the three adult congenital centres that have formal links with a children’s congenital centre.  Some other organisations (eg Royal Hospital for Sick Children Edinburgh, and Royal Hospital for Sick Children Glasgow) also attended.  The main points from the discussion are set out at the end of this blog.


Sir Bruce Keogh is convening a clinical advisory panel to support him in ensuring excellent clinical engagement and advice.  Sir Michael Rawlins, President of the Royal Society of Medicine and Chair of the National Institute for Health and Clinical Excellence from 1999 to 2013, has agreed to chair the advisory panel.  We will provide more information about membership in due course.

NHS England and other partners

On 18 July, the Board of NHS England held its regular meeting in public.   Item 13 on the agenda was a paper about the new review of CHD services.  You can read the paper here .  A video of the Board meeting is available at here  – the relevant section is labelled “Parts 13 and 14”.


The Board of NHS England has established a sub-committee (see blog dated 28 June) to provide oversight of its work on the CHD review and the committee will receive an oral update on progress on Monday 29 July.   I will provide a report of their discussion in the next blog.


Michael Wilson is now the programme director for the new review. Michael has recently been working for NHS England on proposals for formalising clinical networks and developing further cardiology standards for children’s congenital heart services. He has extensive experience of service redesign and strategic change, and project managed Healthcare for London’s successful transformation of stroke services.


MPs and peers (members of the House of Lords) ask questions of health ministers, and the answer (or the transcript when there is a debate) is published in Hansard.  Click on the following links to see questions relating to the new CHD review which have been answered recently:

We expect that further Parliamentary questions will be answered on 2nd September.

Meeting notes

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


  1. Luke says:

    John, very good, informative blog. I’m glad NHS England are engaging with local charities, as well as national charities. I was wondering if you were able to tell me why the British Heart Foundation are attending the meeting on August 7th as they are a national charity who, I don’t think represents any of the local units groups.

    • NHS England says:

      Dear Luke,

      Thank you for your comment. John will be answering this question in his next blog which is due to be published on Monday 12th Aug.


      NHS England

  2. Sue says:

    NHS England – Thanks for the response. First answer to this patient group during the whole course of the many years of this process. In fact this is probably the only direct public response ever given by anyone involved in the process. Everyone involved in the decision making process the first time around either buried their head or turned their backs and ran away.

  3. Doreen Ward says:

    It was very helpful to have the reports from meetings held thus far. I was particularly interested in the feedback from clinicians and to note that the jury may well still be out of the optimum numbers of patients to make a unit considered safe and sustainable. What hadn’t occurred to me the worrying thought that hospitals may well be influenced by needing to keep up the numbers and transfers to more appropriate centres compromised.

  4. Hazel Greig-Midlane says:

    HeartLine represents children with heart disorders whatever the condition, wherever it is treated. On behalf of our members I must reiterate that the review’s defined limits should be of paediatric and congenital groups. Whatever the review establishes for congenital heart disease, the same facilities and resources will be used for those with acquired heart disease (other than antenatal). This includes children with viral cardiomyopathy, arrhythmia, and any other acquired and late arising cardiac condition. They will have access to the same cardiologists, electrophysiologist and surgeons, use the same diagnostic facilities as those born with a heart condition. It simply does not make sense to exclude them when establishing those facilities on which their lives will depend.

  5. Anonymous says:

    John, you will see why I wish to remain anonymous in the following. I am a retired PICU sister, who has twice had the trauma of a child dying in transit. It was only 50 miles to Leeds from Manchester then in 1980’s, the newborn required emergency heart surgery, was ventilated for transit and despite best effort of an anaesthetist; registrar and nurse, this baby was brain dead. Secondly a young child being tranferred from Stockport to Manchester also died in transit, not a long way. So please do not infer that distance is not an issue. Some of these children would not survive flying to USA, unless you can remain at low altitude, to retain pressures on heart?. I am also a grandparent of a little heart warrior.

  6. Sue says:

    Sorry while you have stated that it includes the whole pathway of care for people with congenital heart disease you have not confirmed if it will include the congenital and children’s arrhythmia services. I think that this patient group has a right to know as soon as possible whether NHS England intends to either

    (a) include the whole of this service
    (b) include part of this service (in which case NHS England should make it clear what is to be included and what is to be excluded and state the reasons or exclusion)
    (c). exclude the whole of these services until after a decision is reached (which, in the light of the IRP report, would be highly controversial given this is what the JCPCT’s did)

    If you have not reached any decision yet then, the children, adults and parents have a right to be told that no decision has been reached. If this is the case then I request that this is giiven the highest priority.

    • NHS England says:

      The scope of the new review has not yet been finalised, and will be agreed in conjunction with stakeholders as part of the first phase of our work.

      As part of that process it would be helpful to hear the arguments for and against including this group, mindful that while it is important to include the whole pathway of care, the review must have defined limits if it is to be effective.