The new Congenital Heart Disease review: 23rd update

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

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During the Trust visits carried out by Professor Deirdre Kelly and members of the review team, questions have been asked about the scope of our work and the way in which different aspects of the service are being taken into account. I thought I would take this opportunity to provide some clarification.

In terms of acquired heart disease I can confirm that specialist inpatient and outpatient care for babies, children and young people with acquired heart disease is in scope for the review.

The specification for heart transplant (and bridge to transplant services) for children and young people is not part of our work because this is covered by a separate Clinical Reference Group (Heart and Lung Transplantation) and more information about this group can be found here. Although our review is not setting standards for transplant services, we do intend to develop protocols for access and referral to these services. This work has not yet started. At present we are focused on developing consistent standards that will apply to all units, and not on any changes this may require amongst the hospitals that provide these services. However, if in future changes are considered necessary, any decisions would of course need to take into account the impact on other linked services such as heart transplantation.


Though we are not yet consulting on draft standards, we have been asked if they are available to view in their current form. The draft standards were considered by our Clinical Advisory Panel (CAP) at its meeting on 31 March 2014. The papers were published on our meetings page However, for your convenience I have added links to the relevant papers below:

  • Cover paper
  • DRAFT Standards: Tier 1: Specialist CHD Surgical Centres
  • DRAFT Standards: Tier 2: Specialist (Children’s Cardiology/ACHD) Centres
  • DRAFT Standards: Tier 3: Local (Children’s Cardiology/ACHD) Centres

The standards will be on CAP’s agenda again at its next meeting on 18 June 2014 when they will consider what has been heard during our pre-consultation engagement period as well as a variety of other evidence (including the literature review), before signing off the version for consultation. Further changes are therefore possible. The standards will be subject to three months’ public consultation, which we currently expect will start at the end of July. So there will be an opportunity for everyone to have their say, and I very much hope you will take the opportunity during consultation to review the standards and let us have your views.

Patients, families and their representatives

The review team hosted a WebEx (internet-based discussion with slides, commentary and discussion) on 29 April 2014 for Local Government and Healthwatch organisations, to update participants on progress so far, to outline next steps, and provide an opportunity for participants to ask questions. The agenda is available here and the slides used are available here. You can access a recording of the WebEx via the following here. For technical reasons the link is only available until 28 May 2014; we are working to ensure that this recording will be available (via a different link) after 28 May 2014.


We held a workshop on Monday 12 May 2014 with members of our Patient & Public Group to discuss how best to achieve an effective consultation on standards. We will publish the slides we used for the meeting and will summarise the key points from the meeting.


The next meeting of our Patient and Public Group (Chaired by Professor Peter Weissberg) is scheduled for Friday 13 June 2014 in central London.

Clinicians and their organisations

Professor Deirdre Kelly, Chair of the review’s Clinicians’ Group, along with members of the review team, has now completed around half of the planned visits to the specialist centres around the UK – most recently to Southampton (30 April 2014), Brompton and Guy’s and St Thomas’ (2 May 2014), Newcastle (7 May 2014), and Leeds (9 May 2014). After all the Trust visits have taken place the review team will pull together a report summarising the visits.


The next meeting of our Provider Group (Chaired by Chris Hopson) is scheduled for Wednesday 21 May 2014 in central London.


The next meeting of our Clinicians’ Group (Chaired by Professor Deirdre Kelly) is scheduled for Monday 2 June 2014 in central London.

NHS England and other partners

Our Clinical Advisory Panel met on 31 March 2014. You can find the agenda and papers here.


On 7 May 2014, the UK National Screening Committee (part of Public Health England) announced the outcome of their consultation on the effectiveness of pulse oximetry – they have decided to improve the evidence base by conducting a one year study of pulse oximetry screening on newborns in six areas of the country. View the announcement on the website.  The announcement is receiving some media interest, for example: The Telegraph ‘All newborns to undergo heart tests’


Our Programme Board meets on Tuesday 13 May 2014, and the agenda and papers for the meeting are available here.


NHS England’s Board will hold its regular meeting in public on Thursday 15 May 2014 in London. One of the items to be considered is the routine update from Board Committees, including the new CHD review’s “Task & Finish Group”. A copy of the relevant Board paper is available here. A video recording of the discussion will be available shortly afterwards on the relevant section of the NHS England website.

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. Disinterested Bystander says:

    On another point, it’s slightly disappointing that NHS England has ruled out subspecialism for now:

    “ surgical centres should be set up in such a way as to be able to do the vast majority of CHD surgery with no further formal sub-specialisation
     a two tier service could emerge if some centres were designated for sub- specialist work. There is evidence that second tier centres would contract and decline”

    The evidence for the advantages for increased volume for the most complex procedures is actually stronger than that for increased volume more generally:!po=50.0000

    “ the service should support:
    o the free movement of surgeons to mentor and work alongside other surgeons for difficult cases; and
    o the managed introduction of new techniques.”

    This is all very well for the surgical side, but, for the most complex conditions, the aftercare and nursing experience can make all the difference as well. What happens when the mentoring surgeon goes home and the rest of the care team doesn’t have much experience in that type of complex case?

    It needn’t be a matter of a two tier large/complex and smaller/simple units. If it started from a position of North, Midlands and South hubs (or just north and south, if preferred) for specific procedures/conditions/groups of conditions, and a wider range of procedures were included, to include those that were not especially high risk, but just to avoid extreme occasional practice, then most if not all of the remaining units could be able to sub specialise in something.

    By the way, is NHS England able to publish the original Safe and Sustainable Decision Making Business Case? It no longer seems to be available online.

  2. Disinterested Bystander says:

    NHS England have been relatively circumspect about the possibility of centres being downgraded thus far in the second process and this is reflected in the language in some of the documents that the standards are “challenging” for some providers (when in fact they’re mathematically impossible). This is, presumably, a consequence of the “no preconceptions” rule, but the standards as currently constructed seem to make this inevitable now, specifically the 4×125 rule and the standard for cover for adult and paediatric centres (I presume, in practice, that this means that they have to be within 30 minutes of each other but I’m prepared to be corrected). Of the current ten centres only three currently meet those standards, and one more easily could if adult cases in non-specialist centres were added, or with minor changes to patient flows. Three do not even meet the lower 3×125 transitional threshold:

    This begs the question of how these are going to be implemented? Is it going to be a purely “standards driven” approach in which those centres that can’t meet the standards are allowed to fall by the wayside? Presumably, in practice this would mean those centres that can’t imminently meet the 375 patients standard being automatically decommissioned. This might not produce the best outcome for patients, particularly for the interdependent nationally commissioned services, and might lead to more centres losing their surgery than otherwise necessary. It also might not lead to the most logical configuration or ultimately lead to the medium term achievement of the higher 500 patients standard across the board.

    Alternatively is NHS England going to have another crack at a top down reconfiguration? Either way, there needs to be thought put into how the standards are going to apply in practice, so that NHS England doesn’t get boxed into an outcome that is suboptimal by the logic of the standards. For example, the standards, as currently constructed, prioritise surgeon volume over number of surgeons, but suppose a centre currently has more surgeons than its volume can support, does this mean that they have to lay off surgeons until it can grow its patient volume? What if even after reconfiguration a centre can’t reach the higher 500 threshold straight away but might be expected to do so soon, either through natural growth, or, alternatively because it’s growing in a staged way, first by assimilating patients from a closing centre, and then taking on more patients from neighbouring centres’ catchment areas (this might be a sensible idea for the centres that are currently the smallest rather than trying to dramatically grow in volume all at once)? What if this means that there are fewer vacancies for surgeons in the immediate aftermath of reconfiguration than there are surgeons who have been displaced by centres being decommissioned for surgery? Might it not be better, as a transitional measure to employ the four surgeons per centre first and then increase volume if necessary, both to ease the transition for families moving to a new centre (if they have a familiar surgeon in place) and to avoid losing those skills, either to other countries or altogether?

  3. Leslie Hamilton says:

    One of the major concerns which prompted the Society for Cardiothoracic Surgery to ask for a review of the service in 2008 was succession planning. Departure of the senior surgeon through retirement, illness or moving abroad, can lead to significant interruption in continuity of the service.

    Having small teams (less than 4 surgeons) is a major obstacle to proper succession planning. It takes several years to integrate a new surgeon in to the team – it is the only area of surgery in which a new Consultant will not have undertaken most of the major procedures when they are appointed. In that time they cannot play a full part in the on-call service. I speak as a former congenital heart surgeon.

    Succession planning goes the core of sustainability of the service. Yet I do not see any evidence of succession planning being considered in any of the meetings or papers in this review. I was particularly concerned to read that Professor Kelly was asked on some of her visits why change is needed – succession planning is one of the key issues.

    • Bob Ward says:

      Of course, succession planning is important in many fields of human activity, not just in congenital heart surgery.
      But for congenital heart surgery surely that could be done on a Trust-by-Trust basis without the hugely disruptive and expensive reviews that have been taking place since 2008. Other countries (eg Germany) seem to achieve results as good as those in UK and Ireland with some of their surgical units performing far fewer procedures than units in UK. Or put another way, Britain’s results are ALREADY as good as in any other country. Britain already has a greater concentration than in any other country, as far as I am aware. Will anyone out there please correct me if I am wrong??

    • Sue says:

      As a parent I feel that this is a local governance issue. Succession planning is something that has to be taken into account in every business as standard. Obviously those health authorities who wish to deliver a specialised service have to show that they are able to plan and meet all the needs of running the services. Every business has its customers and in order to attract and retain its patients the NHS specialised service providers have to listen and adapt to the changing needs of their patients. Those service providers which have implemented continuous improvements and change are those which naturally attract more patients and referring clinicians. Therefore, if any centre wishes to attract more patients and be more popular amongst referring clinicians then it is important to listen to the needs of those patients it wishes to attract and work towards making those changes a reality. This is not something that can be done nationally as the changes necessary often require the support and long term commitment of the local health authority which is responsible for delivering the service. It is also how many of the networks which exist at the moment were formed.

      This comment also focuses on just one individual. However, the heart surgeon works as part of a team and each member of that team provides a crucial role to the individual patients. The heart surgeon cannot go into the operating theatre alone and another important member of the team working alongside the surgeon may decide that they require more information about the patient before the surgery may proceed safely. In which case the person responsible for obtaining the information will be fulfilling a crucial role. The surgery may well will be delayed until everyone is happy to proceed and that they feel that they have enough information about the patient to proceed safely.

      Any centre which feels it is failing to attract enough patients to successfully employ enough staff to safely run its service and have successful succession planning has to look to itself and ask why. That centre needs to ask what is happening in those centres which are increasing their services naturally and ask what is it that they are doing that we are not. The key question is why some centres are attracting more patients than others.

      I recognise that you are a heart surgeon but in an emergency situation you will not be the first person to treat any patient. Many patients live a long way from their surgical centres and the surgical centres are given plenty of advance warning of the patient’s arrival. This enables them to ensure that the correct expertize is available for the impending arrival of that patient. If any centre feels that they are unable to facilitate the patient then they have the opportunity to request or arrange that the patient is transferred to a different unit/centre.