Joining Together for Children’s Palliative Care 2019

In May 2019 Northwest Childrens Palliative Care Network members will be joining together to host a number of events and activities across the Northwest to raise awareness of children’s palliative care.

Joining Together for Children’s Palliative Care 2019 is being scheduled to co-incide with

  • Dying Matters week which will run from 13th – 19th May 2019
  • and Children’s Hospice week which will run from 20th – 26th May 2019.

Joining Together for Children’s Palliative Care has three key messages for professionals and families

  • Death, dying and bereavement affect us all.  Talking about it won’t make it happen.
  • Parallel planning means that palliative care doesn’t have to mean giving up, or stopping disease-directed treatment.
  • Many babies and children with long term conditions have unrecognised and unmet palliative care needs.  These children are often frequent hospital admissions or longer inpatient stays.  The number of children with palliative care needs is increasing

Here are some of our ideas for activities and events for Joining Together for Children’s Palliative Care 2019.  Let us know what you think and add your own ideas

For everyone

Alder Hey has offered funding for printing banners and promotional materials

We are hoping to make a few short videos of families talking about palliative care and what it means to them

Display stands and presentations in foyers and atrium spaces

  • Before I die I want to:  what’s on your bucket list?
  • Cupcakes and other giveaways: pens, post its, logo-bugs, stress busting stars
  • High profile members of the organisation share items on their Bucket List.  Guess whose Bucket List and have they achieved it
  • Are you are “planner” or a “one day at a time” person?
  • Wish upon a star:  what would you wish for?
  • Music as a way to share thoughts and feelings
  • Person centred thinking tools: “thinking about my history”, “important to me, for me and for the future”

Focus on organ donation: the gift of life

Focus on Advance Care Planning

Focus on bereavement in schools

Launching our inforgraphic communication skills videos “What is children’s palliative care” and “Talking about palliative care with children and families”

Mythbusters: cxploring common misconceptions about children’s palliative care

Joining together for Children’s Palliative Care: how many people can we get to hold hands together in a circle? What can we join together around?

Forever and ever without end: Legacy is for everyone

For professionals

Using the Spectrum of Children’s Palliative Care needs to identify babies and children who may benefit from palliative care

Launching guidelines for end of life care in hospital

Launching online advance care planning training

Grand round at Alder Hey 19th May (to be confirmed)

Care cart: visiting the wards to talk to staff and share thoughts and feelings

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