Your feedback

Thank you for your continued feedback.  We are still working on some of the questions you have raised previously. For example, you told us you wanted more clarity about the scope of the review (what’s in and what’s out?), and you asked about the governance (who makes the decisions? who provides advice, and how is it joined up to the decision making?).  We will provide clear responses to these questions, with explanation, in a future blog.

Some of the points which have been raised since then, in the blog and elsewhere, are:

• Is it a requirement of the new review that the number of surgical units must be reduced (eg from 10 to 7)?
• What does NHS England do about patient safety concerns raised during this process?
• Why was the British Heart Foundation invited to a meeting of local charities?

The number of units:  Bill McCarthy’s advice in the recent meeting with local charities – and elsewhere when this has been discussed – was that “there is no number”.  We may – at the end of the process – have determined that we want a specific number, but that is not where we start from.  Instead, we are commissioning a national service against national standards for the whole population.   It must be consistently high quality and it must be sustainable.  That requires us to look at the latest data and best projections, to use the evidence and to make judgements.  And of course, we have been asked to look at adults’ and children’s services together, which is a big change from the last review.  For all these reasons, our work does not begin with a target number of units.

Patient safety concerns:  As we continue our discussions with stakeholders during this review, from time to time an issue may be raised with us about patient safety at one or more units.  It is important that we have a clear and consistent approach to handling these concerns, so we will always:

• inform the NHS England “domain lead” (Dr Mike Durkin) – a very senior official with lead responsibility in NHS England for patient safety
• pass any safety concerns on to NHS England’s medical director in the appropriate region (London; North; Midlands & East; and South).  The medical director is well placed to …
• consider the issue with the Care Quality Commission (CQC), who have legal powers to assure essential levels of safety and quality.  CQC hosts the government’s new “Chief Inspector of Hospitals” and works with NHS England locally to undertake “quality surveillance”

British Heart Foundation: NHS England wants to take the opportunity presented by this new review to do some things differently. In my first blog (28 June), I mentioned that we were talking to three charities (Involve, National Voices, and the Centre for Public Scrutiny), to help “ensure that everyone’s voice is heard and that we work together constructively”. We’ve now also asked the British Heart Foundation (BHF) to work with us as an independent but informed party.  Because they have a broader focus than congenital heart disease alone, we’d like them to be involved in the new review as a critical friend, to help us to engage effectively, and to act as an honest broker as we build mutual trust in the process. We asked them along to the local charities meeting on 7 August so they could hear first-hand the local as well as the national perspective.  If BHF, NHS England or other stakeholders don’t think this approach is working, we’ll reflect on that.

Patients, families and their representatives

We scheduled a meeting of local charities and patient groups for 7 August.  A few people told us they could not make this meeting because of the school holidays and other pressures on their time as volunteers and carers.   We decided to go ahead with the meeting anyway, because most of those we invited could attend and we did not want to delay any further this important meeting. But we do recognise the difficulty of finding times and dates that are convenient for everyone who wants to participate and we will give this careful thought as part of our “stakeholder engagement” plan.  I will say more about this plan in a future blog. The enclosed note sets out the main points from the 7 August discussion.

Clinicians and their organisations

NHS England is responsible for all specialised commissioning, including services for congenital heart disease (CHD). It has established clinical reference groups (CRGs) across the full range of specialised services, to provide clinical advice. The CRGs are made up of clinicians, commissioners, Public Health experts and patients and carers who use the relevant specialised services. Together the members form a group which can advise with authority and expertise about a particular area of specialised healthcare. One of the CRGs is specific to congenital heart disease and is chaired by Dr Graham Stuart, a consultant cardiologist at University Hospitals Bristol. More information about the group can be found here:Clinical Reference Group E05 Congenital Heart Services. At its meeting on 30 July, the group received an update on the new CHD review.  You can read about the relevant points made in discussion here.

The meeting note refers to work on clinical standards.  The work on clinical standards is being undertaken by a Clinical Implementation Advisory Group (CIAG) chaired by Professor Deirdre Kelly, Professor of Paediatric Hepatology at Birmingham Children’s Hospital. This work (as well as work on developing congenital heart networks) began some months ago, and NHS England has agreed that this should still be supported, and has asked Professor Kelly and CIAG to complete this work.   We think it is very important to maintain momentum and not lose the progress which has been made so far.  When the work is complete we will be able to consider its implementation as part of the new CHD review.  Completing this work will benefit the new CHD review and allow us to make faster progress than we otherwise might; but of course it does not decide the outcome of the new review.  

NHS England and other partners

On 29 July, the CHD sub-group of the Board of NHS England met to review progress of the work to date.  The enclosed note sets out the main points from the discussion.

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On 31 July, NHS England’s Chair, Professor Sir Malcolm Grant, wrote to the Rt. Hon Jeremy Hunt MP, Secretary of State for Health, providing a short update on the new review of congenital heart disease (CHD) services. The letter follows NHS England’s Board meeting held in public on 18 July, which describes the challenge facing NHS England in improving congenital heart disease services and outlines early thinking on the way forward.  In line with NHS England’s commitment to transparency, a video recording of the Board’s discussion is also available.

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I am to publish a new CHD blog every fortnight, usually on a Friday, so you can expect future publication dates to be 23 August, 6 September, 20 September, and so on.  However I am on leave from 12-16 August so my next blog (due 23 August) might be a little bit delayed.