I dream of Managed Clinical Networks!

As part of our wider conversation to inform the development of our new strategy, we will be publishing a series of blogs reflecting on what great children’s palliative care should look like in 2028, what needs to happen to get there and what Together for Short Lives’ role could be in achieving that. Today we hear from Sacha Langton-Gilks, DD's Mum, who shares her personal vision for what great children’s palliative care could look like in 2028.

I dream of Managed Clinical Networks!

"What do you mean you were never connected to the children's hospice locally when DD was dying?" My friend was incredulous, "We were immediately connected to the adult one when John's cancer metastasised." (Her husband had recently died.) 

"It's awful," I replied. "Children's palliative care is regarded as a mini version of the adults and it's assumed any improvements filter down, but it's totally separate, with different needs. It's not formally recognised or funded as a separate medical discipline. So, there was no consultant for children’s palliative care at our main hospital to link us to the hospice. Government funding runs out every March." 

Fast forward to my vision for 2028

It's no longer down to luck and a fight whether a family manages to secure the therapy, services and support needed for their beloved child. Following a huge public outcry in 2020 spearheaded by Together for Short Lives on behalf of the 70,000 families identified in a new register of children and young people's palliative care, the government had finally put the funding in place for the managed clinical networks identified by NICE back in 2016 (MCNs). 

  • As a result, in 2028 every family who must receive a life-shortening diagnosis for their child now does so with a palliative specialist present alongside their disease specialist.

  • There are paediatric palliative consultants in every acute hospital that supplies critical care for children and young people.

  • Most exciting of all, following an immensely successful multi-platform awareness campaign run by the government and leading charities, including Together for Short Lives, the public now know what palliative care and hospices offer.

  • Gone are the dark days when the public thought it meant you stopped treatment, and let someone die in a hospice.

  • The young people featured in the vlogs for the campaign celebrating their life achievements were living proof that with the right palliative care throughout your childhood and teen years, life-shortening conditions were no impediment to hopes and dreams.

  • New data from Public Health England's epidemiology unit has shown beyond all doubt the benefits from the MCNs and the campaign.

  • Children and young people are living longer with these complex conditions.

  • No longer are children and young people mostly dying in hospital. Instead they are choosing to die at home with hospice home-care and sharing their plans on their digital platforms.

  • The resulting savings to acute hospitals’ paediatric intensive care units have been reinvested in young people's social care.

  • Deaths among parents and family breakdown and divorce following a child death have also dropped, something also credited to the successful campaign for Parental Leave and Support and the linked bereavement care always offered by the hospices.

As a recent government health minister said in response to these new findings: "We judge our society by how we treat our most vulnerable - children and young people with life-threatening conditions. It is right that at last their health outcomes and those of their families have been addressed. We should be proud of our NHS and social care linked by the new digital technologies."  

Sacha Langton-Gilks, DD's Mum (17.11.95-14.8.12) is Lead Champion of The Brain Tumour Charity's Headsmart campaign and author of a forthcoming book on children's end of life care: Follow the Child.

If you would like to submit a blog to support this series then email emma.dixon@togetherforshortlives.org.uk If you would like to share your comments on our strategy then please complete this short survey.  We are keen to hear from as many people as possible, so do share this blog with your stakeholders and networks. You can also engage with the conversation on Twitter, using the hashtag #forthe49000

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