5 characteristics of great palliative care

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 Rachel Wright, a parent, nurse and writer.

“Hello, thanks for agreeing to talk to me about your community palliative care nurse.”
“No problem.”
“How long have you been having a palliative care nurse visit your home?”
“More than seven years.”
“How would you rate the care provided – poor, satisfactory, good or excellent?”
“Excellent.”
“I’m not sure why I start with poor, everyone I have spoken to has said excellent.”

That was the start of telephone conversation I had this month. My local CCG is reviewing the community palliative care service because, in a time of austerity, they feel it is no longer cost effective. It is currently at risk of being shut down, months after being rated ‘Outstanding’.

The last question during this conversation was:

 ‘If you had a magic wand, what would palliative care services in your area look like?’

 So here are my 5 characteristics of a great palliative care service for my family in the coming years.

 1: Bespoke

What works for one family, or in one area, might not be the same for another. Care needs to be planned at a micro and macro level by professionals who know the stories and experiences of families of children with life-limiting conditions. Services need to be driven by family needs not professional perception.

Good palliative care is family lead not service driven.

2: Reliable

The negative impact of respite being cancelled and services being stopped is enormous. It doesn’t matter how plush the inside of Mercedes is, nor how high the spec, if it keeps breaking down, it is a useless car. Families depend upon services, so they need to be delivered as promised and funded for the long haul.

3: Timely

When normal life includes a life-limiting condition, you stop thinking too far ahead. I don’t imagine my family in 2 years, or 5 years, because I can’t. I don’t know what the future holds and that makes my present so much more important. So, good palliative care services respond to demand quickly and don’t take months for assessments and services to take place.

4: Flexible

Life changes in an instant. We know that more than most. Families therefore need a service that adapts to ever changing needs.

5:Continuity

It takes time to trust a carer, become comfortable with a service, and develop relationships with professionals. Continuity in services is essential for trust and relationships to form.

It isn’t easy to sum up the impact of effective services because it isn’t easy to fully describe the physical and emotional toil of life. For us families, who love children with a life-limiting condition, a lot of our world is beyond our control. I suspect our tendency to veer towards OCD with medications, feeds and life in general, is a vein attempt to manage an overwhelming situation as best we can.

 In my dream world I have an advocate, locally and nationally. Someone speaking up for my family, when I don’t have the energy nor the words. And I wish that getting support left me feeling empowered rather than inept.

But the icing on the cake of my dream world would be not having to fight.

I really wish I didn’t have to defend the services we get. I wish I didn’t have to justify my son’s needs. I hope for the day when, nationally, palliative care services are based on need not postcode; where standards are agreed, and met. 

Rachel is a nurse, writer and mum of three sons. Her eldest was born with complex disabilities and life-limiting epilepsy. She blogs at Born at the Right Time and published her memoir, ‘The Skies I’m Under’. Through sharing her story and giving a families perspective, she now trains professionals in effective communication when caring for children with life-limiting conditions. For more information she can be contacted through her blog.

What do you think? 

Tell us what you think of this vision for Children’s Palliative Care by posting a comment below. You can share more detailed comments by completing this short survey. You can also submit your own blog to support this series by emailing emma.dixon@togetherforshortlives.org.uk

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

1 Comments

  • Pat Thew . 21 April 2017, 17:40

    Too true ,you have to have been there to understand .
    Rachel is on a mission for all families with her problems .

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