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The new Congenital Heart Disease review – John Holden

The aim of this blog is to provide a clear and up-to-date account of the work NHS England is now leading to help improve services for people with congenital heart disease (CHD).

When we plan a meeting, or if we have held a discussion, or done some work, whether it is with charities, doctors, politicians or anyone else – you can expect to read about it here.

I will try to strike a balance between something which is easy to read, but which also has enough information for you to follow up any specific points that you want to know more about.  If you have any suggestions for improvement please do let me know: use the comments box below.  I am unable to respond to every single message but I will take note and I will aim to provide an update to the blog every two weeks. 

Recent events

On Wednesday 12 June 2013 the Secretary of State announced in Parliament that he accepted the advice of the Independent Reconfiguration Panel, that “the [Safe and Sustainable] proposals cannot go ahead in their current form”.  He went on to say that “it is right we continue with this process, albeit in a different way” and that “NHS England now must move forward on the basis of these clear recommendations”.  You can read the full text of the debate here.

NHS England will now develop a new process to improve services for children and adults, addressing the concerns raised by the Independent Reconfiguration Panel.

Patients, families and their representatives

We are very keen to begin the conversation with local and national charities, and other stakeholders, about the future of congenital heart services. We know – because some of you have already been in touch – that you want to hear about next steps from NHS England as soon as we are able.   However we also know that this has been a difficult time for all concerned and there will be a wide range of views about what has happened and what needs to happen.

So – we have decided that we will get some expert, outside help with these conversations. We want to design and plan the best way to ensure that everyone’s voice is heard and that we work together constructively. NHS England is now in contact with three separate registered charities to discuss how they can help us to get this right. They are:

Involve – experts in public participation. They design and deliver high quality public and stakeholder engagement processes.       

National Voices – a national coalition of health and social care charities in England, working together to strengthen the voice of patients, service users, carers their families and the voluntary organisations that work for them.

Centre for Public Scrutiny – a charity whose principal focus is on scrutiny, accountability and good governance, both in the public sector and amongst those people and organisations who deliver publicly-funded service. CfPS may be able to help us to learn lessons from the process to date.
You can expect to hear more very soon about how we will engage with you.

Clinicians and their organisations

We want to have productive discussion with the professionals who care for patients, the organisations they work for, and the associations which represent them. NHS England’s Medical Director, Professor Sir Bruce Keogh, is considering the best way to get a balance of expert clinical advice.  Bruce will oversee a process of clinical engagement, and amongst other things will consider the potential for obtaining external, international advice.  

We decided that as a matter of priority we should hold an introductory meeting with the 10 centres/Trusts currently providing children’s heart surgery.  This took place in London on Friday 21 June and was attended by all 10 organisations, with most represented by their Chief Executive and/or Medical Director.  The key points to come out of the discussion were as follows:

  • Patients and their families come first. The care they experience does not always measure up to the standards we would wish. Many patients and families are now even more uncertain about where their care will be delivered in future.
  • There needs to be a vision of what the future could look like, which explains that we want a high quality service which is future proof. It is right to want to make good services better, and to be more sustainable. But the story so far has been dominated by fear of service “closures” and “loss”.
  • The process must be built on standards, rigour, honesty and transparency. And this must be visible throughout, for example in the use of data and evidence.
  • This should be a national service with national standards, serving the whole population, not a patchwork of regional solutions.
  • Some attendees felt that the “answer is in the room” – in other words units working together, with effective networking as in other specialties. But this was not a justification for simply prolonging the status quo, with better dialogue between centres.
  • There was real concern about maintaining a viable service, and a real risk of losing good clinicians, or failing to train and recruit the next generation, due to the continuing uncertainty.  
  • The role of national professional associations was highlighted, and the importance of their impartiality. And the role of local clinical teams would be critical, both to provide expert input to the review and to give a balanced and honest account to patients and families locally. 
  • The NHS England ambition – to have an implementable solution in a year – sent the right sort of message about urgency, but was a heroic target. To stand any chance of realising this, any new process must have pace, clarity of sequencing, and all those providers involved must honour commitments made during the process. 
  • It was suggested that the process should consider dependencies across the whole of the UK and Ireland. More generally, the new review process would benefit from some international perspective.
  • It was important to consider the whole patient life course  – from ante-natal testing and diagnosis to adult monitoring and interventions
  • The IRP’s report is the starting point for a new process but – notwithstanding its criticisms of Safe and Sustainable – there is some good work in Safe and Sustainable that should not be lost. It will however be important to look at the earlier review in the context of 2013 and latest projections of demography, case mix etc.

NHS England and other partners

The Board of NHS England has established a committee which will provide formal governance of this work.  The committee is chaired by Sir Malcolm Grant, our Board Chairman, and includes Margaret Casely-Hayford and Ed Smith (non-executive directors), Sir Bruce Keogh (our Medical Director), and Bill McCarthy (National Director for Policy). To support the Committee, we expect to put in place arrangements which include clinical, organisational and service user representation.

Bill McCarthy is the senior responsible officer for this work.  As Director of System Policy – one of Bill’s deputies – I will co-ordinate the work within NHS England and ensure the full involvement of the many different stakeholders.

You can read more about the members of the Board’s committee on the NHS England website.

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5 comments

  1. Angela Ledsham says:

    I am a nurse working in an intensive care unit that cares for children following surgery for congenital heart disease. As I believe the independant review panel was anything but independant I wish for some reassurance that this time the review will be transparent, truly independant and clear in steps for implementation. After all it seems 6 million pounds was wasted in the previous process. I would like to point out that during the safe and sustainable process we have all striven to give the best compassionate, evidence based and highly competent care for these children. There has been no real acknowledgement of this – meanwhile we carry on providing the expert care without being able to really develop the service further. You need to understand that the longer the uncertainty continues the more unhelpful it is. I really hope that this time you get it right. I also feel that your panel needs representation from all the clinicians involved in a childs care rather than just the medical professionals. Nurses working on the ‘shop floor’ are able to contribute if given a chance. It should not just be’clinical experts’

  2. Mary E Hoult says:

    The real experts in all this are people like John Illingworth who has tried to follow real process in order to establish proper consultation,I hope it is people like John who are the main stay of any new group being formed to ensure public confidence in the new process..

  3. Andy says:

    “NHS England’s Medical Director, Professor Sir Bruce Keogh, is considering the best way to get a balance of expert clinical advice”
    We all had enough of experts with undeclared conflicts of interests, sitting on multiple pannels. We cannot accept anymore Professors, ex consultants, current consultants give advice, all with a predetermined mind on which Centre need to close. They have already discredited enough the review. Where are they now? Any comments they want to make to the IRP report? Anyone want to give radio interviews writing articles on local papers, or pontifying how good was the Safe and Sustainable review. No more expert, please.

  4. HeartLine, registered charity 295803, has over 2000 member families – we support children with heart disorders and their families, whatever the condition, wherever it is treated – in practice this is throughout UK and Ireland
    I came across this page by chance (why were we not emailed the details?). It gives a very clear picture of where you are at the moment, and as a parent who drafted the original ‘standards’ at the time of the Bristol Inquiry gave me a faint glimmer of hope that you will be able to offer the design of the service that we need. Providing safe and sustainable surgical services is an important issue, but I constantly reiterate that most children who die or are damaged have not had their heart condition diagnosed/diagnosed accurately. The major changes must be made in local communities – we are still collecting signatures at fetes and festivals for a petition for pulse oximetry to be offered to all newborns. (But this is an ego free zone – maternity hospitals are not going to go to war and consultants will not get kudos from implementation.)
    HeartLine has been involved in all stages of the review, framed many of the standards, represented the views of members, begged for acquired heart disease to be included alongside congenital, attended all meetings open to parents, provided updates in publications, provided a response to IRP.

    • Seth Edwards says:

      Thank you for your comment. We value the work of your charity, and that of all our third sector stakeholders and partners.

      NHS England’s website has regular updates and new pages are added on a daily basis. We do not as a rule update our stakeholders in advance of these pages being published as we feel this runs counter to the way a website actually works.

      Our site does offer the option to set up RSS updates for those stakeholders and users who want to be alerted to updates instantly and we also have the weekly news bulletin – NHS News – which we encourage everyone to subscribe to.

      Regards,

      Seth