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The new Congenital Heart Disease review: 20th update – John Holden

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Some of you have asked about the arrangements for our different engagement events, and the demands they place on people. Most recently we’ve been asked about the Easter holiday events for children and young people. We are running these events during the holidays to allow as many children and young people as possible to participate. The duration of these events is intended to allow enough time to have fun, and have a good conversation, but not cross the boredom threshold.  And we do offer to reimburse travel costs for patients and members of the public who take part in one of our events or meetings.

It’s hard to run events in a way that suits everyone. So rather than attempt a one size fits all approach, we are trying a number of different approaches that we hope will allow more people to participate. These approaches are complementary: no-one should feel they are missing out if they can only participate via one route. They include:

  • specific events for children and young people;
  • meetings with service users and families as part of our visits to hospital units;
  • a comments form for patients/parents unable to attend one of these events;
  • regular meetings with representatives from charities and patient support groups; and
  • the opportunity to comment online via the blog.

We are, of course, also planning formal public consultation on the proposed service specifications and associated standards, which will give everyone an opportunity to contribute to this aspect of our work.  If there are other practical approaches we should consider that would open up engagement still further, we would welcome suggestions.

Patients, families and their representatives

Our next Patient and Public Group meeting chaired by Professor Peter Weissberg takes place on 27 March 2014 in central London. An agenda is available to view here.

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In my last blog (Blog 19) I told you about a series of engagement events with children and young people that we have scheduled during the Easter Holiday period (7 April 2014 – 17 April 2014) as follows:

  • Birmingham: 7 April 2014 – Aston Conference Centre, Aston University
  • Liverpool: 8 April 2014 – The Engine Room, Liverpool University Student’s Union
  • London: 9 April 2014 – Meeting Room 3A, University of London Union
  • Bristol: 10 April 2014 – Activity Room 11, Bristol University Student’s Union
  • Southampton: 11 April 2014 – 2 Space, Southampton University Student’s Union
  • Leeds: 14 April 2014 – MINE Venue, Leeds University Student’s Union
  • Leicester: 15 April 2014 – Queen’s Hall, Leicester University Student’s Union
  • Newcastle: 16 April 2014 – The Discovery Museum, Newcastle
  • Cambridge: 17 April 2014 – Cormack Room, University of Cambridge Centre

We are currently preparing for all nine events, but at this stage we have had low uptake for some of the dates / locations. If any of the events remain seriously under-subscribed, we will instead invite any children and young people in that location to attend their next nearest event. Please do let the review team know if you / your child would like to attend by emailing england.congenitalheart@nhs.net. Please do share this with other parents and guardians of young people who use congenital heart disease services, and ask them to if they have children who would like to attend an event.

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We have previously received comments and questions about Patient and Public representation on the Congenital Heart Services Clinical Reference Group (CRG). This CRG has recently run a process to add an additional four Patient & Public members to the existing four.  The new appointments have now been announced and details of the latest CRG membership can be found here.  The operation of the CRGs is separate from the new CHD review process and we have no role in appointments to CRGs.

Clinicians and their organisations

The Provider Group met in London on 18 March 2014. The agenda for the meeting is available here and the slides we used are available here. You can read a DRAFT note of the meeting here.

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The next meeting of the Clinicians’ Group is scheduled for 7 April 2014 and we will publish an agenda for the meeting as soon as it is available.

In my last blog (Blog 19) I told you that Professor Deirdre Kelly, Chair of the Clinicians’ Group, has offered to visit Trusts currently providing congenital heart surgery, accompanied by members of the review team. At that time we had secured dates for all but two Trusts. I can now confirm the following date:

  • University Hospitals Bristol NHS Foundation Trust: 20 May 2014

We are still working with Central Manchester University Hospitals NHS Foundation Trust to schedule a visit.

NHS England and other partners

On 13 March 2014, NHS England published a report into the children’s heart services provided at Leeds Teaching Hospitals NHS Trust. The Leeds review investigated issues raised about the safety and quality of care at the trust. A copy of the report is available here. The report was published the day after Sir Ian Kennedy – who chaired the inquiry into failures in paediatric heart surgery at the Bristol Royal Infirmary over a decade ago – met families whose children died or suffer permanent ill-health following heart surgery at another hospital in the city, the Bristol Royal Hospital for Children. Sir Ian is in discussion with the families about setting up an Independent Review into their concerns, at the request of Sir Bruce Keogh, NHS England’s National Medical Director. More information about the proposed review at Bristol can be found here.

Although separate from our national review, we are receptive to any lessons from these local reviews, which can help us to commission the best possible service for all patients in England.  One obvious way we can embed the lessons learned is by amending the service specification, on which we intend to consult soon, and which will be used for commissioning CHD services from 2015/2016 onwards.

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 In my last blog (Blog 19) I published the agenda and papers for the review’s Programme Board which was due to meet on Tuesday 11 March 2014. The draft notes of that meeting are now available here. Our Programme Director Michael Wilson gave a presentation at the meeting which showed several possible scenarios for the timetable for consultation on standards and specification. These slides were not available in advance so I am enclosing them here for completeness.  They show that we intend to begin consultation in July 2014, though the date is still not fixed and assumes we are able to complete the governance checks without any hold-up.

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The next meeting of our Board Task and Finish Group is scheduled for 15 April 2014 and we will publish the agenda and papers for this meeting as soon as they are available.

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As some of you will already be aware, Bill McCarthy, Senior Responsible Officer for the new CHD review will be leaving NHS England to take up the position of Deputy Vice Chancellor at the University of Bradford at the end of June 2014.

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MPs and peers (members of the House of Lords) ask questions of health ministers, and the answer (or the transcript when there is a debate) is published in Hansard.  Below are some links to recently answered questions that relate to the work of the new CHD review and related issues:

10 March 2014

http://www.publications.parliament.uk/pa/cm201314/cmhansrd/cm140310/text/140310w0003.htm#14031037000011

Greg Mulholland: To ask the Secretary of State for Health when he was informed that NHS England would not complete the Congenital Heart Disease Review by June 2014. [190536]

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