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:

• BHF report
• Children and young people: statistics 2013
• The booklets
• Media coverage
  • The Independent
  • The BBC

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.