The new Congenital Heart Disease review: 5th update

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

A shorter than usual blog this week, which reflects the holiday season but also that we have completed our first round of stakeholder and governance meetings, we are taking stock of where we are now, putting in place the essential components of the new review, and planning the next round of meetings.  There are no new meeting notes to share or forthcoming events to announce.  I expect to have more to say next time.

Your feedback

Thank you for your continued feedback.  Some of the points which have been raised, in the blog and elsewhere, are:

  • Support for families when bereaved or when there is a poor outcome
  • How are we deciding which stakeholders to meet and when, and where is local government in all this?

Support for families:  We’ve previously reported that in our meeting with local patient groups, one of the big issues raised was support for families when bereaved or when there is a poor outcome from intervention. This was reinforced in a letter we received from a parent involved in a national group (who has given permission for the letter to be quoted here (document is available on our archived website).

We have asked the group working on additional standards for children’s services to review those standards to ensure that, where appropriate, they address these concerns.

Stakeholders:  We’ve been challenged as to whether we are respecting the right of local government to scrutinise NHS proposals.  In my last blog, dated 12 August, I referred to the fact that we are working on a “stakeholder engagement plan” which will help us to set out who we aim to engage, for what purpose, in what order, through which method, and so on.  We will base that plan on what we’ve learnt already about the different preferences people have for how they want to engage, and we’ll share it, to check with stakeholders whether our plan feels right.  Until that work is complete, we have been trying to make common sense decisions about the relative priority of meeting different groups.  The plain truth is we prioritised patient groups and clinicians over local government.  We felt it was imperative to meet the national charities, the local charities, the national clinical leaders, and local (ie surgical centre) clinicians, first, and that is what we have done.

Having completed that first round of meetings we are now turning our attention to the next priorities including local government and national politicians (as well as planning the next round of engagement with patient groups, clinicians and organisations).  We need to be clear however that there are as yet no proposals about changes to the service for local government’s overview and scrutiny committees to consider.  Precisely how best to engage with local government is something on which we are taking advice.  We have to strike a balance between effective local engagement, including each of the 150 or so local authorities who have a legitimate interest in the new review, and at the same time considering the national dimension and the needs of all patients and services in England.

Patients, families and their representatives

In the last blog I highlighted the important role of Clinical Reference Groups (CRGs).  Attendees at the recent meeting of local charities also asked about patient and service-user representation on these groups.  Find out more about how to get involved.

On 21 August, the British Heart Foundation (BHF) released a report on heart disease in children and young people with a lot of information about the number of children born with heart defects and the improvements in survival rates in recent decades.  They also released a series of booklets called ‘Understanding your child’s heart’.  This was not an NHS England report, but if you want to read more about it I’m sharing the links here purely for information:

NHS England and other partners

NHS England will be holding an Annual General Meeting on 12 September 2013 at the Queen Elizabeth II Conference Centre, Broad Sanctuary, Westminster, London SW1P 3EE, starting at 18:00 with registration from 17:30.  An agenda for this meeting will be published shortly and the meeting will be live streamed on our website.  If you would like to attend please register.

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


  1. Anonymous says:

    On the point about the ‘relative importance’ of engaging with local government: It should be recognised that local government is made up of democratically elected representatives – elected to represent some of the same groups identified. There is a growing sense among local politicians that NHSE see’s local government as an irritant, rather than a representative body that can help shape proposals – not just scrutinise what’s put before it.
    The proposed timescales for the new review also appear very ambitious, and contribute to the sense of local government being left out of the loop.
    That said, if NHSE had outlined its approach in the first instance – rather than leaving space for others to fill – there may have been much less opportunity (and reason) for concerns to be raised at this point.

    • Healthwatch Leicester says:

      Healthwatch Leicester wrote to Professor Sir Bruce Keogh in early July seeking clarification as to when the bodies with statutory responsibilities such as local Healthwatch, will be consulted in the review process.

      This followed disappointment that despite NHS England asking for views and contributions prior to the end of July, in order to assist in deciding how the review format could include such recommendations, we found that the process had already been well advanced with no inclusion or apparent consideration with Healthwatch England or Local Healthwatch.

      Healthwatch Leicester raised its concern with the Leicester, Leicestershire and Rutland Overview and Scrutiny Committees, this resulted in the matter being called in by the Secretary of State, so we believe we have strong ownership of ensuring public and patient views in addition to those provided by local charities.

      No reply was received from Professor Sir Bruce Keogh so a further email was sent and copied to you on 5 August 2013. We received a reply that consideration was still being made as to how OSC’s and local Healthwatch could become involved.

      Please can you update us as to what the proposals are, when they likely to be brought into existence and when will Healthwatch representatives be part of the invitations that have already been given clinicians and heart charities?

      E. Charlesworth
      Review Lead Leicester, Leicestershire and Rutland Next Stage Review

  2. Anita Leedale says:

    I agree totally with the letter received by NHS England from someone representing a National Charity and would like to thank them for sending this in. I am a member of a small support group who came together from a need that stemmed from the lack of support provided by the NHS in just such circumstances as bereavement, children left with sever injuries, or where parents have been told their child is inoperable and don’t know where to turn for lack of support. This letter could have been written by any member of our group as we all have been let down very badly in this area by the NHS and so once again I thank the author for speaking out.
    I would also like to add that when parents are told their child is inoperable they too are going through a grieving process and every effort should be made to accommodate their concerns and their need of getting another opinion. They should not be told not to research hospitals that have had success in their child’s condition, there should be an automatic referral to other specialist units and when these are exhausted and the diagnosis is the same then and only then should a parent be told their is no hope for their child.