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Usha Grieve 6 February 2020

“Help us fight our corner”

Can speaking to someone who has ‘been through it themselves’ help people have a better end of life experience?
Working in the open

In the diagnosis period and time after, it’s not just an information access problem… the problem is that the information is overwhelmingly dominated by the medical dimension. People are not getting equivalent attention to dealing with the emotional or social parts of their life.

Person who took part in our research

At Compassion in Dying we have a well-established information line, led by our nurse, Sarah. We achieve great outcomes and people repeatedly report that speaking to us helps them get treatment and care that reflects their values, priorities and wishes.

But last year we started wondering if we were helping everyone who contacted us in the way they needed.

We did some research to find out what information people wanted to help make sense of a life-changing diagnosis and make treatment and care decisions that are right for them. We found that:

We heard pretty clearly that people wanted to speak to ‘someone who has been through it themselves’ who could ‘help us fight our corner’.

Peer support for people with a terminal or life-changing illness

So, that’s what we’re going to try and do — we’re running a three-year pilot to measure the impact of providing peer support through our information line. We want to offer people the opportunity to speak to someone who has also experienced a life-changing diagnosis, to walk side-by-side with them (on the phone) through part of their journey.

The value of peer support is well-evidenced. It can help people feel more knowledgeable, confident and happy, and less isolated and alone, and can lead to significant health and wellbeing benefits.

But despite this growing evidence, peer support for people nearing the end of life seems pretty untested (but I could be wrong on this and would love to hear from anyone doing something similar).

So this project is all about learning and understanding what helps people to have a better end-of-life experience, to make the decisions that are right for them and to feel in control.

What we hope to achieve

Well, we will be working hard to measure and evaluate the outcomes people experience after speaking to our ‘peer navigator’. We hope that as a result of accessing the service, people will:

Help us find the right person

So watch this space and, as always, we will work out loud and share our learning as we go. First, we have to find the right person to join our passionate and friendly team. We are looking for someone to join our team who has personal experience of living with a long term or terminal illness and of having to make complex decisions about treatment and care. If you have the right experience, or can think of someone who might, we would love to hear from you.

Please share the job ad far and wide.

And if you’d like to talk to us about the project or get involved then get in touch.

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