We was very fortunate that @SachaLG author of Follow the Child co-hosted this chat with us and we had the invaluable insights from many bereaved families and @LucyAlexandria a young person living with a life limiting illness.  Thanks so much to you all

@Stacys_mum_ We had a whole module in our last year regarding EoL care and symptom management (particularly in the community) but not so much about it in the acute setting! I’ve found I’ve learnt more on placement about EoL care in acute

@SachaLG feels that families could be trained to look after children at home more

@LucyAlexandria as a YP says 'You just don't get taught. You learn bit by bit the care procedures & activities, but no one ever explains the journey, provides the full information, sits down with you & answers questions about the road ahead on a general scale, you just go bit by bit, day by day'

@MrsRB14 'I completed a number or 1 day study days post reg (locally run) and also the foundation in paediatric palliative care course run at GOSH but practical experience, palliative care MDTs, shadowing palliative care consultant was vital to increase knowledge and reduce theory practice gap'.

@hepworth_becky 'I did a short course when I first became a CCN. A lot is learnt on the job as a CCN. Learning from more experienced colleagues'

@owen_theowen 'many skills and knowledge in EoL are transferable from other experiences or training... communication, technical (pumps etc), fundamental nursing care etc'

@SachaLG 'I know far too many that never had the conversation about the fact their child was about to die let alone about what sort of treatments'

@LivingwithLen5 as a parent aIso hasn’t come across many children with an ACP.

@hepworth_becky uses the http://cypacp.uk/ website

@kwelsh1 shared here blog post https://katywelsh473383320.wordpress.com/2018/07/18/24-7-a-walk-in-my-shoes-caring-for-a-child-with-complex-needs/

@4AdsthePoet reminds us that there's more to ACPs than DNAR

@SachaLG says they did have 24/7 phone support @UHSFT and were extremely lucky that @GSFCentre#EOLC training at GPs too. They called in @mariecurieuk for night support

@MrsRB14 said 'in last couple of years hospices are now providing outreach workers to provide overnight care for families and plugging this gap to help facilitate families being able to stay at home if this is where they wish to be'

@EHUKate says There are some great models where children’s hospices are providing stepped up care with CCNs for our of hours eol care.

Many areas have CCN teams that provide 24/7 cover for E0L care when required

@LucyAlexandria says 'As a young adult, I don't have 24/7 support. I could maybe phone the adult hospice the young adult hospice are now part of. But it's wait until working hours or go to A&E most of the time'.

@hepworthbecky told us that thier adult hospice on IOW has a new Transition Nurse who is already making a big differences to young people

@LucyAlexandria says she's very fortunate to have @TheJsHospice in her area for 16-40. However, they're only available working hours & limited amount of hands-on nursing & huge demand. however, they've been invaluable, liaising, fighting, supporting, advocating

Digital legacy is becoming more imprtant now more of us, espcially young people have a more active online profile.  The digital legacy association has some useful advice

https://digitallegacyassociation.org/

Many people said that the local hospice and outreach workers do a lot with memorey making

Other Resources

Nice Guideline (2016) End of life care for infants, children and young people with life- limiting conditions: planning and management

https://www.nice.org.uk/guidance/ng61/resources/end-of-life-care-for-infants-children-and-young-people-withlifelimiting-conditions-planning-and-management-1837568722885

Child Bereavement UK

https://childbereavementuk.org/

Together for Short Lives

https://www.togetherforshortlives.org.uk/