Colin Rees shares his father’s journey of cancer care and how patient experience can be transformed in the NHS
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My Dad has terminal cancer.
The statement is true, not made for effect, just a fact. What is also true, not made for effect, just a fact, is that my Dad has been a disempowered, passive recipient of care and support in a system through which his cancer care has been done to him, rather than with him.
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As soon as I started talking about my Dad’s experience, friends and colleagues started to share the stories of their loved ones. We agreed we needed to do something! Just sharing our experience will change nothing, but by pulling together likeminded people with relevant skills we wanted to see if we could make the change other people’s family or friends could benefit from.
Before I get to a discussion on solutions, let me highlight some of the problems based on my Dad’s experience. I get it that they may well be very different for others, but this is my Dad’s reality, his experience which appears to mirror those of many, many others.
The big issues
For my dad there are two big issues; 1. The disconnect between the services 2. How disempowered he felt throughout this journey.
This disconnect is one that exists across the patient pathway from the GP, the acute trust, specialist providers and the hospice. Four sets of records that did not connect, were not shared and with care decisions made in isolation on that day, in that hour, in that setting. This on top of being told he has three to six months to live to then be sent an appointment for nine months’ time. It does not give confidence!
Cancer is not the defining element, it’s the right care option for the individual that they want and choose, rather than what they are told they will receive
The only constant in the puzzle is the patient – my Dad. My sister who takes him to his appointments also takes a carrier bag of notes. Each time, they ask him about his diagnosis, his medication, and again he tells his story, it’s a different specialist this time. This is not an isolated case and correlates with the experience of many other. Why is this not joined up?
In relation to his care, Dad gives the analogy of being on a train that’s stopped and you have no way of contacting the driver to find out what’s happening. You simply have to wait passively, until those in charge decide to let you know what’s going on.
Annoyed, you get off and find you are right back where you started. At no point on this journey has he ever been asked: ‘What do you want’? What is important for you and your family?
Cancer is not the defining element, it’s the right care option for the individual that they want and choose, rather than what they are told they will receive. NHS Improvement states that “a patient’s time is the greatest currency in health and social care”. So why does the system not recognise this?
If not me, then who? if not now, then when?
We want to ensure the patient has all the information to hand and they can share in advance so they only have to tell their story once
Simply sharing a patient experience does not change anything. No one seeks to deliver a poor patient experience especially at the end of life, yet it’s happening, so what can we do to improve it?
Transforming Systems has a social enterprise that works for free on solutions to social problems where we feel we can have an impact. In October 2018 we held a roundtable with experts from across the cancer pathway to scope the problem and explore next steps.
Our clinical partners have already mapped one pathway (prostate) and in 2019 we will bring together patients and clinicians to co-develop a patient empowerment app that maps their patients’ journey, highlights what should happen and when, driving patient engagement at every stage, and a mechanism to flag disconnects. We want to ensure the patient has all the information to hand and they can share in advance so they only have to tell their story once.
Our aim is for no one else to take the same train journey as my Dad!
All time and technology is given for free by our partners from across all the sectors and the objective is to give this app to the NHS for free. If you or your organisation want to be part of this work in 2019 please contact me, we would love to have you on board firstname.lastname@example.org