The new Congenital Heart Disease review: 29th update

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

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We have been asked how, in our analysis of CHD activity, we have taken account of specific factors that may affect future demand for CHD services. Over the last year, we have spoken to clinicians and to our advisory groups, read the relevant literature, and carried out some statistical analysis to shed light on what may drive future activity and what the impact may be.

We have been able to identify a range of potential factors (for example, new technology, changing public expectations, and older/younger maternal age). But due to a lack of data and information it has not been possible to isolate and model the specific impact of each. What we have done is model a scenario where the historic trend in activity growth continues. This allows for all the factors that have contributed to activity growth above population to continue in the future as they have in the past (10 years for children’s services, 7 years for adults’). This is how we have treated all the different possible drivers of activity, with the exception of population growth for which we have projections from the Office for National Statistics (ONS). Obviously this approach has its limitations, but it is the best we can do under existing data and time constraints. We are confident that it provides a reasonable idea of “upper bound” (i.e. maximum activity growth) for us to consider.

This is “scenario B” in the evidence pack under the “NHS England” heading below.

Patients, families and their representatives

On Friday 25 July 2014 we had a joint meeting of all three of our engagement and advisory groups – patients and public, clinicians, and provider leadership, with over 80 attendees. The agenda for the meeting is available here and the slides presented on the day are available here. We asked attendees to complete an “event evaluation form” and have enclosed the results/comments we received here. We will publish a write-up of the discussion and full list of attendees in due course.


Some families missed out when the review team visited Bristol recently; Michael Wilson (our Programme Director) and Jane Docherty (Project Manager) met with these families on 7 August 2014.

Clinicians and their organisations

The draft minutes of the review’s Clinical Advisory Panel (CAP) meeting on 18 June 2014 are now available here.


On 30 July 2014, Professor Deirdre Kelly (Chair of the review’s Clinicians’ Group) along with some members of the review team visited Blackpool Teachings Hospitals Trust. This is the first of three visits to a representative sample of units providing ACHD procedures outside the specialist congenital surgery centres. The other visits are scheduled as follows: Brighton on 13 August 2014, and Papworth on 15 August 2014.

NHS England and other partners

Our analysts have been working on an evidence pack that sets out what the data tell us about specialist inpatient activity and some scenarios for the future. This was issued to our Programme Board, and I presented a subset of these slides at our joint meeting on Friday 25 July. We have since noticed an error in the two slides (44 and 45) that showed historic patient flows – this was due to an issue in the software used to generate the maps, not an issue in the actual data. We have been able to resolve the issue and the full evidence pack with the corrected maps is available here.

Our activity analysis is based on the best information available as of May/June 2014. Over the next few months we may expect new information to become available to inform our work, such as your comments and suggestions, and updates to our key data sources. As a result we expect to refresh the analysis for any relevant new information towards the end of the year with a view to having updated results to share in January 2015. It is important to note that the proposed standards are not dependent on this analysis and neither is the upcoming consultation.

The table below sets out the expected updates for our key data sources:

Data Expected update
NICOR CCAD 2013/14 data Mid-September 2014
HES Admitted Patient Care 2013/14 data Now available
ONS updated population projections 2016
SUS 2013/14 spend data Mid-August 2014

Any comments you have on our analysis so far and any of the above please email us at


Our Programme Board met on 28 July 2014 and the agenda and papers are available here. Item 5 “Revised Terms of Reference” explains that the Programme Board membership has been extended to include representatives from Regional and Area Teams, Finance and other colleagues in specialised commissioning teams. A note of the meeting will be published as soon as it is available.


On 29 July 2014, Michael Wilson (the review’s Programme Director) attended a meeting of the Women and Children’s Programme of Care (POC) Board. The POC Board was asked to review and advise on the draft service specifications and impact assessments before they are formally presented for sign-off at the 20 August 2014 POC meeting and then put to the 2 September 2014 meeting of the Clinical Priorities Advisory Group.  This is part of the governance required for us to consult on the proposed standards and service specification. You can read the papers that were submitted in advance of the POC meeting here.


NHS England has organised an NHS Citizen Assembly Meeting on Thursday 18 September 2014. This is not part of the CHD review but it is possible that CHD and/or specialised services could be discussed. The day will contain lots of opportunities for patients, carers and members of the public to debate, deliberate and work together to explore solutions to issues important to health and well-being in England. NHS Citizen is about bringing the views of people into the decision making of NHS England. Everyone is welcome. It is still being designed and this is a test of the Assembly model. You can register to attend here and if you would like submit ideas for consideration at the session (which will be shortlisted down to five topics) you can do so here.


Issue 2 of NHS England’s specialised commissioning stakeholder newsletter is now available here.

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

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  1. Sue says:


    Some time ago I raised a query regarding the definition of “paediatric” which NHS England is using in respect of the standards which will shortly be going to consultation. This query still appears to remain unanswered.

    The national definition of “paediatric” appears to be up to the day of 19th birthday. However, for the purposes of the review it would appear that it is proposed to use the definition of “adult” as aged 16 and over in respect of the adult congenital services. This is significant in that it would appear that NHS England is still planning to state in some of the standards that children should be seen in a dedicated “paediatric” service and not the “adult” services, therefore, it is important to know to which ages the definition of “paediatric” applies. If you are using definitions which do not correspond then some of the proposed standards may conflict.

    When the consultation is ready can you ensure that it clearly states what definitions you are using for each service? It is unclear at this stage whether NHS England will be using the set ages or whether there will be a more flexible definition for “paediatric” which states up to the 19th birthday but excluding those between the ages of 16 and 18 if they have undergone transition.