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I was very pleased to read this letter on involving children and young people (CYP) which is so important.
RheumMates (https://www.facebook.com/groups/rheumates/) is a group which was already set up together with young people with rheumatological conditions (based on the highly successful NeoMates model, which provides parent peer support for neonatal unit parents) for this purpose.
This came about after we presented NeoMates at the Royal College of Paediatrics and Child Health annual conference at the same time that an inspirational young person presented her work on setting up Raiise (https://raiise.co.uk) to improve care and provide support for young people with "invisible illnesses".
It is a place where CYP can chat to each other safely, knowing that everyone in the group has a common link.
It is also a source of expert knowledge and information.
To complement it, we also set up RheumMatesParents where parents can also chat, gaining the peer support that the NeoMates parents have had for many years.
I wonder if these could in some way be combined to help improve peer support and patient engagement?