Your feedback

Thank you to everyone who has provided feedback, in response to the CHD blog or elsewhere.   We cannot respond to every single comment we receive but we will take them all into account.  Some early themes to emerge are

i) the need to listen to a cross section of opinion, not just a select few “experts”;

ii) doubts about the likelihood of major change ever being possible, because there is too much inertia and/or political nervousness;

iii) the importance of keeping a truly open mind – about what we will find from the evidence and what it means for the way services are organised.

On all of these points, I can offer reassurance, but of course you must judge us by our actions.   Our intention is clear:

i) we will be as inclusive as we possibly can in our discussions, and we won’t assume that the only experts are those people who lead their organisations.  We will try to find ways to give individuals, as well as organisations, a voice.  We will have more to say soon about how you can get involved;

ii) we will make a compelling case for change.  NHS England has today published “The NHS belongs to the people” – a call to action on the future of NHS services – which you can read at https://www.england.nhs.uk/2013/07/11/call-to-action/ .   This sets the context for all our work (including the new CHD review), and it reaffirms that “do nothing” is not an option;

iii) we will conduct the review with rigour, honesty and transparency.  We start from wanting to understand what a really good service looks like, and what are the standards which should be the measure of whether we have achieved that.  We will reiterate these points in all our discussions.

Patients, families and their representatives

We have scheduled a meeting with national charities, to be held in central London on 16 July.   Those charities who have been invited are:

• Tiny Tickers
• The Somerville Foundation
• Arc
• Downs Heart Group
• Heartline
• Little Hearts Matter
• Children’s Heart Federation
• British Heart Foundation
• Cystic Fibrosis Trust
• South Asian Health Foundation
• National Voices
• Asthma UK
• Max Appeal

Clinicians and their organisations

We have scheduled a teleconference with national clinical representatives on 16 July.  Those who have been invited to take part are:

• Royal College of Paediatrics and Child Health
• Adult Congenital Advisory Group
• National Institute for Cardiovascular Outcome Research
• Clinical Implementation Advisory Group
• Association of Cardiac Anaesthetists
• Paediatric Intensive Care Society
• Society for Cardiothoracic Surgery of Great Britain and Ireland
• British Congenital Cardiac Association
• Royal College of Nursing
• Clinical Reference Group for Congenital Services
• Academy of Royal Colleges of Medicine
• Royal College of Surgeons of England
• British Maternal and Fetal Medicine Society

We have also scheduled a meeting on 22 July with medical and nursing representatives 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.   There are around 20 other NHS Trusts/Foundation Trusts in England that currently undertake some surgical or interventional procedures for adults with congenital heart disease, and in due course we will be broadening our engagement to include them. Those invited to the 22 July meeting are:

• Royal Brompton and Harefield Trust NHS Foundation Trust
• Alder Hey Children’s NHS Foundation Trust
• Great Ormond Street Hospital for Children NHS Foundation Trust
• Guy’s and St Thomas’ NHS Foundation Trust
• University Hospitals of Leicester NHS Trust
• The Newcastle upon Tyne Hospital NHS Foundation Trust
• Oxford University Hospitals
• Birmingham Children’s Hospital NHS Foundation Trust
• University Hospital Bristol NHS Foundation Trust
• The Leeds Teaching Hospitals NHS Trust
• University Hospital Southampton NHS Foundation Trust
• University Hospitals Birmingham NHS Foundation Trust
• University College London Hospitals NHS Foundation Trust
• Central Manchester University Hospitals NHS Foundation Trust

 NHS England and other partners

The next meeting in public of NHS England’s Board will consider a paper which outlines our proposed work programme on the new CHD review.    The meeting is on 18 July, and will take place at NHS England Southside, 105 Victoria Street, London SW1E 6QT. Start time is 10.15am. If you would like to attend, please register your interest as places are limited. Please contact england.boardattendance@nhs.net by 4pm on 17 July 2013.

All the Board papers are published on our website in advance and the meeting will be broadcast live as part of our commitment to make information as accessible as possible.  A recording will be placed on You Tube within a few days.

For more information please see https://www.england.nhs.uk/about/board/meetings/