Research_ACP for babies, children & young people

Supporting children with serious conditions - through family-centred research. Special interests in advance care planning
Dr Karen Shaw
Jenna Spry @jenna_spry

[Jenna💙 @Jenna_Spry]

Well done to everyone who worked on these new versions and for the 'how to complete an ACP' doc 📒
It is great to see so much that has changed as a result of what parents/carers & professionals told us...😃 https://t.co/hL3pLqKpVN

[Alex Mancini (Smith)💙 @mancini_smith]

A specific version for antenatal/perinatal teams. A resource for supporting conversations with families about choices & Whats Important @NeoPallCare @LdnNeonatal @DrKatie_G @YHneonet @NWNeonatalODN @cathryn4605 @SWFetalODN @JoKirbys6 @WMNODN @KerrElliott @Neonatal_ed @NNAUK1

[A Child Of Mine @achildofmine]

We are looking for parents of children that died in 2021 either in hospital, at home/hospice with palliative care for a vital research study to help make a difference for future families. Please RT and contact us if you are interested in being involved. https://t.co/ZhlGazBiqO

[Together for Short Lives @Tog4ShortLives]

The children's palliative care sector is facing an increasing shortage of experienced children's nurses.
Check our jobs board for rewarding nursing roles where you can make a real difference to seriously ill children and their families.
#NursesDay
https://t.co/hgqdPDn7IZ

[Research_ACP for babies, children & young people @CYPACP_research]

Apologies @sneilson I meant @sneilson10 !

[Jenna💙 @Jenna_Spry]

Super proud of the impact our research is already having @sneilson, karen shaw!
@DrGemmaHeath @janette_v @nickifitz
@UoB_IAHR

[Together for Short Lives @Tog4ShortLives]

Ministers need to provide money to make sure the #NHS can fund 24/7 access to #palliativecare #InAGoodPlace for children & families.
Seriously ill children and their families need more community children's nurses & specialist children's #palliativecare doctors NOW.
#DMAW21

[Jenna💙 @Jenna_Spry]

Super proud of the impact our research is already having @sneilson, karen shaw!
@DrGemmaHeath @janette_v @nickifitz
@UoB_IAHR

[Research_ACP for babies, children & young people @CYPACP_research]

Read how our research is informing Education and training around advance care planning - Together for Short Lives - https://t.co/KlAlyJeAhG
@Tog4ShortLives @unibirm_MDS #DMAW21

[Research_ACP for babies, children & young people @CYPACP_research]

Excited to share the final reports of our research funded by @mariecurieuk to evaluate the Child and Young Person's Advance Care Plan (CYPACP)
Read them at https://t.co/1Gqktf0nkX
@UoB_IAHR #DMAW21 #PlanForLife

[Sands Insights @SandsInsights]

On #IDM2021 we want to say a huge #ThankYou to all #midwives who provide care and support to parents and families when a baby dies

Your compassion and hard work is very much appreciated and never forgotten

#BabyLoss #Stillbirth @SandsUK

[Together for Short Lives @Tog4ShortLives]

Talking about death is hard. Talking about childhood death is even harder. It doesn’t bear thinking about. Only it does… #DMAW21 is all about being #inagoodplace to die & whilst that might sound counterintuitive, it is all about choice – having a say in your end of life care.

[Jenna💙 @Jenna_Spry]

@mancini_smith @Mark_D_Kilby @a_ewer @ScotPerinatal @EMNODN @WMNODN @NorNetUK @LiverpoolWomens @WRHNeonatal @BirtHWaysNHS @BWH_NHS @wmpccn @yvonneheward

[Research_ACP for babies, children & young people @CYPACP_research]

🚨Deadline extended!🚨 4th January 2021

Technical issues fixed - you can access the survey now! Please help - how do you plan for uncertainty/palliative care for babies (before & after birth)?
@BAPM_Official @RCObsGyn @RCPCHtweets @MidwivesRCM @theRCN #Perinatal #Neonates

[Research_ACP for babies, children & young people @CYPACP_research]

Last few days to let us know what your Hospital, Trust, Unit, Hospice, Team do in relation to perinatal advance care planning #Perinatalupdate

https://t.co/GxuV3qyNrl

We have NO info from the North East of England - please respond - it's quick & easy!

[Research_ACP for babies, children & young people @CYPACP_research]

Last few days to let us know what your Hospital, Trust, Unit, Hospice, Team do in relation to perinatal advance care planning #Perinatalupdate

https://t.co/GxuV3qyNrl

We have NO info from the North East of England - please respond - it's quick & easy!

[Research_ACP for babies, children & young people @CYPACP_research]

⚠️We have had reports of issues accessing REDCap for the survey. I am sorry and we are investigating.
Please do try again this week.

[Research_ACP for babies, children & young people @CYPACP_research]

Thank you! And thanks for sharing about access. NHS firewalls very strict so try copying the whole address in to browser
https://t.co/GxuV3qyNrl
#Perinatal

[Research_ACP for babies, children & young people @CYPACP_research]

@NorNetUK Please share this information with your region. We are mapping what is happening in perinatal advance care planning or palliative care planning & are missing info from your region.
If the link gets blocked, type the whole web address in.
Thank you 😀

[Research_ACP for babies, children & young people @CYPACP_research]

Last few days to let us know what your Hospital, Trust, Unit, Hospice, Team do in relation to perinatal advance care planning #Perinatalupdate

https://t.co/GxuV3qyNrl

We have NO info from the North East of England - please respond - it's quick & easy!

[Research_ACP for babies, children & young people @CYPACP_research]

#FetalMedicine #OrganDonation #Neonates #PedsICU
UK Wide - we need you!

[Research_ACP for babies, children & young people @CYPACP_research]

Last few days to let us know what your Hospital, Trust, Unit, Hospice, Team do in relation to perinatal advance care planning #Perinatalupdate

https://t.co/GxuV3qyNrl

We have NO info from the North East of England - please respond - it's quick & easy!

[Research_ACP for babies, children & young people @CYPACP_research]

Last few days to let us know what your Hospital, Trust, Unit, Hospice, Team do in relation to perinatal advance care planning #Perinatalupdate

https://t.co/GxuV3qyNrl

We have NO info from the North East of England - please respond - it's quick & easy!

[Research_ACP for babies, children & young people @CYPACP_research]

Thank you! And thanks for sharing about access. NHS firewalls very strict so try copying the whole address in to browser
https://t.co/GxuV3qyNrl
#Perinatal

[Izabela Andrzejewska @Iza67872889]

@CYPACP_research @BAPM_Official Completed and shared. It works only in Edge Microsoft @Lwin_Mills

[Research_ACP for babies, children & young people @CYPACP_research]

1 WEEK TO GO!!🚨
Please get your responses in ASAP so that the findings are as useful for clinicians as possible
We need to hear from the whole of UK
#obs&gynae #FetalMedicine #Neonatology #NICU #PICU
#PalliativeCare #Maternity

[Research_ACP for babies, children & young people @CYPACP_research]

Do you care for babies before or after birth?

If yes, WE NEED YOUR HELP to map advance care planning in perinatal settings by completing our survey
We know everyone is extremely busy so it is short, simple & easy to complete.
🚨Deadline 16th December

👉https://t.co/DM3P5NwJZe