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The voices of children and young people will be central to CHD consultation
I thought I would take this opportunity to reflect on the early days of our consultation on the future of services for people with congenital heart disease.
The consultation was launched on 9 February 2017, and already we have had a lot of opportunities to talk about the proposals with many of you, answering questions and listening to views. And many people are completing the survey to share their thoughts and respond to our questions. That’s really good news.
But we know that it’s not just adults who will want to have a say in this debate, many children and young people will too – either because they are living with CHD themselves, or their relatives or friends are.
It’s important that their voices are central to this consultation, but we also know that the usual style of consultation documents puts many children and young people off.
That’s why I’m pleased to be able to launch our new, specific consultation website for children and young people, including an accessible animation setting out the changes we are proposing to make – please do share it among your networks and on social media to ensure as many voices are heard as possible.
There are a lot of other resources available at our consultation hub for adults too if you have not responded yet, or you are working with others to help them understand and respond to the proposals. They include:
- The consultation document
- A summary of the consultation document in English and translated into Gujarati, Hindi, Polish, Punjabi, Tamil, Urdu and Welsh.
- An EasyRead Version of the consultation document which may be useful for people with learning disabilities, some children and people with English as a second language
- A link to the children and young people’s website
In addition we have included important reference materials like:
- A link to the standards
- A list of consultation events
- Our impact assessments
At some of our events we have been asked for certain a number of questions and for certain documents – we will be updating our Q&A shortly with answers and links.
Consultation will continue until 5 June (revised date 17 July) 2017 (with a quieter period during the run up to the local government elections in May). If you have a chance to come to one of our events, we’d love to see you and hear your views. But most of all, let me urge you to complete the survey which you can find here.
Your entry needs to be updates. It is my understanding that some weeks ago you stood down as the Regional Director of Specialised Commissioning (London) to take up another appointment in the NHS. It is also incorrect to state that the consultation phase ended on 5th June. With regards the CHD Review you have left behind a complete mess and nobody at NHS England appears to be keen to take over this project. I wonder why?
Very much hoping you use the “break” in consultation process that needs to be observed for General Election to reverse the Brompton CHD closure.
I think you know the thoughts of those close to the hospital but also know that this extends beyond the parochial nature of local people fighting for their site.
Do the right thing and do not fall into the trap of the Safe and Sustainable process that tried to shut down CHD for equally illogical reasons.
If you do, it really does not bear thinking about as you have admitted you have no clue what happens to patients, either CHD or respiratory, afterwards. The lack of planning is as shocking as the proposal itself.
Thanks very much for this update and the news that CYP are being encouraged to respond.
Communication and feedback to this consultation is as you say vital, the balance between creating services that are sustainable and providing key expertise,using best world standards is key but at the same time this will inevitably lead to some people travelling further.
This has an impact – particularly on those most in need, larger families, working parents, parents of children with disabilities and in turn the impacts on the units that have ‘lost services’.
Therefore, part of the plan needs to emphasise and reinforce newer models of working – virtual teams and networks – investigations remaining as much as possible close to populations – multidisciplinary teams not necessarily co-located, and lastly speedy (same day)communication about patients to local units and ED services.
I am encouraging colleagues in the EM to respond.
yours Jane (Dr J Williams Clin.Dir.EM Children’s Network)
Please do not forget about us paediatricians with expertise in DGHs.
We struggle to get appropriate payments and tariffs for our cardiology clinics.
We struggle to get given time for network function and CPD.
We struggle to have a best practise standards that are appropriate to smaller DGHs who will never have numbers large enough to employ a echo technician.
We struggle with psychology support for all patients, not just cardiac.