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The new Congenital Heart Disease review: 19th update
Thank you to everyone who has submitted documents and references in response to our call for evidence. We have passed these on to the team at ScHARR who are conducting a literature review for us. The deadline for submissions has now passed and so we cannot guarantee that any further submissions will be considered for this exercise. We will, of course, make every effort to take account of any further evidence which becomes available as the review progresses but it will not be part of this ScHARR review.
Patients, families and their representatives
The Patient & Public Group met in London on 10 February 2014 and a write up of the meeting is available here. The next meeting of the Patient & Public Group is scheduled for 27 March 2014.
We have organised a series of engagement events with children and young people to take place during the Easter Holiday period (7 April 2014 – 17 April 2014). The events will be held in the afternoon and will provide both an opportunity for children and young people to contribute to the review, and also to learn some new technology skills. The events have been scheduled as follows:
- 7 April 2014: Birmingham – Aston Conference Centre, Aston University
- 8th April 2014: Liverpool – The Engine Room, Liverpool University Student’s Union
- 9th April 2014: London – Meeting Room 3A, University of London Union
- 10th April 2014: Bristol – Activity Room 11, Bristol University Student’s Union
- 11th April 2014: Southampton – 2 Space, Southampton University Student’s Union
- 14th April 2014: Leeds – MINE Venue, Leeds University Student’s Union
- 15th April 2014: Leicester – Queen’s Hall, Leicester Student’s Union
- 16th April 2014: Newcastle – The Discovery Museum, Newcastle
- 17th April 2014: Cambridge – Cormack Room, University of Cambridge Centre
We are currently preparing for all nine events, but if we find there is very little demand for an event at any of the locations, we will not hold that event. Instead we will enable any children and young people in that location to attend their next nearest event.
We have produced a fact sheet with details of the events which you can read here and we will provide more information over the coming weeks, but wanted to give you the dates now to give you as much notice as possible.
Please feel free to share this with parents and guardians of young people who use congenital heart disease services, and ask them to email email@example.com if they have children who would like to attend an event, and tell us which event that is.
Professor Deirdre Kelly, Chair of our Clinicians’ Group, has offered to visit Trusts currently providing congenital heart surgery, accompanied by members of the review team (see further details below in the section marked Clinicians and their organisations). We have asked the relevant Trusts to invite patients, parents and local patient groups to participate in the visit (see dates below).
Clinicians and their organisations
The Provider Group (engagement with Chief Executives and other senior leaders of provider organisations) met in London on 15 January 2014 and a note of the meeting is available here. The next meeting of the Provider Group is scheduled for 18 March 2014.
The Clinicians’ Group met in London on 30 January 2014 and a note of the meeting is available here. The next meeting of the Clinicians’ Group is scheduled for 7 April 2014.
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. The objectives of the visits are to:
- meet the clinical team, including a tour of the paediatric and adult units; and
- where possible meet patients, parents and local patient groups to hear about their experiences and views.
These visits are intended to improve understanding about the way the service works, and are NOT for the purpose of judging, scoring or in any way assessing the units. All of the relevant Trusts have agreed to visits, and we are in the process of organising dates and times. The current timetable of visits is set out below:
- Oxford University Hospital NHS Trust: Tuesday 8 April 2014
- Alder Hey Children’s Hospital NHS Foundation Trust: Tuesday 15 April 2014
- University Hospital Southampton NHS Foundation Trust: Wednesday 30 April 2014
- Royal Brompton & Harefield NHS Foundation Trust: Friday 2 May 2014
- Guy’s and St Thomas’ Hospitals NHS Foundation Trust: Friday 2 May 2014
- Newcastle upon Tyne Hospitals NHS Foundation Trust: Wednesday 7 May 2014
- Leeds Teaching Hospitals NHS Trust: Friday 9 May 2014
- Birmingham Children’s Hospital (NHS Foundation Trust) and University Hospital, Birmingham: Monday 19 May 2014
- Great Ormond Street Hospital for Children NHS Foundation Trust with The Heart Hospital and University College Hospital: Wednesday 28 May 2014
- University Hospitals of Leicester NHS Foundation Trust: Friday 30 May 2014
- Cardiff and Vale University Health Board: Wednesday 4 June 2014
- Central Manchester University Hospitals NHS Foundation Trust: TBC
- University Hospitals Bristol NHS Foundation Trust: TBC
We would like to ensure that visits to the units by Professor Kelly and the review team include an opportunity for patient groups and parents connected with each unit to contribute to the review process. This is of particular importance for those who are unable to attend other patient and public events due to travel and other commitments.
Michael Wilson and Jane Docherty from our review team attended a Royal College of Nursing (RCN) Network Meeting on 26 February 2014 to which nurses from all congenital cardiac units were invited. Colette Cochrane (representing the RCN for children’s nurses) presented an up-date on the work to develop children’s service standards, and Sheena Vernon (representing RCN for the adult nurses) presented on an up-date on the adult standards. There were around 50 nurses present, the majority of whom were children’s nurses. Michael updated the group on the progress of the review, and Jane took part in the round-table discussions about what the review would need to deliver to maximise patient care and experience.
NHS England and other partners
Our Programme Board is meeting on Tuesday 11 March 2014 and the agenda and papers are available here.
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:
24 February 2014: http://www.publications.parliament.uk/pa/cm201314/cmhansrd/cm140224/text/140224w0006.htm
Stuart Andrew: To ask the Secretary of State for Health how much the NHS England review of adult congenital heart disease services has spent on external communication consultants from each employed company to date. 
Greg Mulholland: To ask the Secretary of State for Health how many congenital heart disease procedures have been carried out at each of the children’s heart surgery units in the UK in each of the last three years. 
26 February 2014: http://www.publications.parliament.uk/pa/cm201314/cmhansrd/cm140226/text/140226w0001.htm
Alex Cunningham: To ask the Secretary of State for Health what assessment he has made of the potential need and benefits of routinely testing babies at birth for congenital heart disease; and if he will make a statement. 
Alex Cunningham: To ask the Secretary of State for Health what assessment he has made of the annual cost to the NHS of routinely testing babies at birth for congenital heart disease; and if he will make a statement. 
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 on this website.
Can you put a little more thought into meetings for parents and children? Please bear in mind that parents travel from all over the country. Therefore, it would be preferable if meetings for parents and children were held on the same day. It is an extra burden on families both financially and on parents time if they have to travel on one day to take their children and then another day for themselves.
It would be far better if NHS Engand just contacted an outreach clinic and asked if they are allowed to ask permission to chat to parents and children while waiting to be seen. You only need to send one person to each clinic and most parents would be happy to chat.