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*Fathers of children with a life-limiting condition* Would you like to take part in a research study about your health and experiences? Link to survey: york.qualtrics.com/jfe/form/SV_aa…

*Parents of a child with complex medical needs* Would you like to take part in research about your experiences of receiving health care for your child? Please contact the study team by email if you would like to take part/find out more: [email protected] The CoLab Partnership

Are you a health professional working in UK NICUs? Are you interested in being a site for an NIHR funded study on end-of-life care in the NICU setting? Please see below. BAPM National Neonatal Audit Programme (NNAP)

If you’re interested in #coproduction - great piece by George Peat

Are you a health professional working in UK PICUs? Are you interested in being a site for an NIHR funded study on end-of-life care in the PICU setting? Please see below. PICANet Audit Paediatric Critical Care Society

Is you child receiving #PalliativeCare in the North East/Yorkshire? Do you know what to do if something goes wrong #OutofHours? UoYppcrg would like to hear your experiences to better understand round-the-clock care. Contact details below 👇

New name, same important research - the former Martin House Research Centre is now the Pediatric Palliative Care Research Group UoYppcrg I'm proud to continue as part of the team working hard on our existing and new research

We are pleased to have submitted the IRAS ethics form for work packages 3&4 of the APPRAISE study 🎉 This work (starting Nov 2024) will evaluate the psychometric properties of the new PROM in the context of short-term and long-term surgical outcomes, and in a clinical trial.

Currently, no standard procedure exists for identifying/ addressing the support needs of parents of children with a life-limiting condition. Our study shows that the CSNAT (Paediatric) is relevant and a promising option. Further study needed to assess feasibility/ acceptability

We had our first in-person PPI meeting yesterday. Thank you to all our fantastic PPI panel members for the valuable feedback they shared. We are looking forward to the next one!

📣📣 UPCOMING EVENT - Palliative care for children and young people Wednesday 6th November 2024, 13:00-16:30 Online and in-person Cicely Saunders Institute at King's FREE to attend, register here: buytickets.at/facultyofnursi… Fantastic programme 👇

A real honour to present alongside such wonderful speakers. A really enjoyable and thought-provoking afternoon.

Next MAIN Event Webinar: Friday 17th Jan @ 12:30 to 2pm "Crisis Prevention not Crisis Management: the health and wellbeing of parents and children with life-limiting conditions" With Lorna Fraser and Victoria Fisher Register here for free: events.teams.microsoft.com/event/9ef6f963…

Assisted dying in the UK: please don’t ignore the impact on children and young people New editorial from Lorna Fraser adc.bmj.com/content/early/…