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The new Congenital Heart Disease review: 6th update – John Holden

Your feedback

Thank you for your continued feedback.  There are two issues which have been raised with us that I wanted to mention this week – both housekeeping, but important nonetheless:

  • How to contact the new CHD review team
  • Where to find information relating to the new CHD review

How to contact the new CHD review team: You have told us that you want a more reliable way of getting in touch than commenting on the blog.  So, we are setting up a dedicated email address – england.congenitalheart@nhs.net – which we expect to go live during w/c 9 September.  As stated previously, we cannot commit to respond to every individual correspondent, but we promise to take account of all comments and queries.  We have also been asked about the possibility of a dedicated phone line, in particular to meet the needs of those who may not have internet access.   Our main contact number is 0207 932 9128.    We do not have the capacity to guarantee to staff this number at all times, but we will respond promptly to any voicemail messages.  Our postal address is New congenital heart disease review, NHS England, Southside, 105 Victoria Street, London SW1E 6QT.

Information relating to the new CHD review:  As the review progresses we will have an increasing amount of material – agendas, reports, meeting notes and so on – that we want to make available, in line with our commitment to openness.  Some of you have already asked about documents that we intend to make available. To date we have enclosed documents and used web-links in the blog, which is a useful way of drawing attention, but it is not a systematic way of storing and retrieving previous and current information.  So, we have set up a web page here which will over time become the definitive archive for all relevant material.  We have started to populate this web page, and we are adding material all the time, but it is a work in progress and you may not yet find everything you would expect.

Patients, families and their representatives

On 27 August Michael Wilson (Programme Director for the new CHD review) and I met Geoff Alltimes (Associate, Local Government Association) and Tim Gilling (Deputy Executive Director, Centre for Public Scrutiny).  You can read a note of the meeting here: notes from the meeting with LGA and CfPS. We discussed the best way for the review to work with local government. Their advice was that we should get on with it!  As a result we are in the process of setting dates to attend a meeting of the health oversight and scrutiny committees (OSCs) that referred the Safe and Sustainable process to the Secretary of State.   I will attend the Yorkshire & Humber health OSC on Friday 13 September.   We know that other OSCs may be interested in the review and that the areas and issues they cover might change over time. We are also preparing a briefing to be sent to all councils in England, explaining our work and offering to meet. We also plan to invite council leaders from those areas that include a specialist congenital heart unit to meet us, to talk about the new review, to hear how they would like us to work with them, and to share lessons from the Safe and Sustainable process – what worked and what didn’t.

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At the invitation of group chair Sally Brearley, on 5 September Michael Wilson attended a meeting of the Specialised Services Patient and Public Engagement Steering Group.  This was a good opportunity to provide a briefing on the work of the review and our emerging approach to working with patients, families and the public. There was a lot of interest from the group, but not enough time for a full discussion, so we agreed to meet again in the near future so that the review can benefit from the experience and insight of group members. The group challenged us to consider how the patient viewpoint would be represented in every group where decisions might be made.   You can see the membership of the group here: Specialised Services PPE steering group.

Clinicians and their organisations

I have previously referred to the importance of quality standards. Last week, Professor Sir Bruce Keogh wrote to the chair of the group working on standards for children’s services, Dr Tony Salmon, and to the chair of the group that has developed standards for adult services, Professor John Deanfield.   Sir Bruce emphasised the importance of a comprehensive and consistent set of standards covering the whole pathway and asked that the two groups to work together to achieve this. He also highlighted NHS England’s intention to achieve the highest possible quality, within the available resources, now and for future generations. He asked the chairs to ensure that the standards set out what is needed to achieve this, recognising that it is likely that there will be some standards that are very challenging for existing providers.   He also asked that each group makes sure that the nature and limitations of the available evidence underlying the standards was made clear. You can read the letters here: letter from Sire Bruce Keogh to Tony Salmon, letter from Sir Bruce Keogh to John Deanfield.

NHS England and other partners

I have used previous blog entries to describe our efforts to run an inclusive process where everyone feels well informed, they have the opportunity to be heard and for their views to be fairly reflected.  This is not always easy – the road to hell is paved with good intentions – and I was relieved to see I am not the only one struggling to get it right… you may find this blog an interesting read:  NHS Networks blog – the Gary Test.

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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.  See here to see questions relating to the new CHD review (and other topics relating to heart disease) which have been answered recently.

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