Six years ago, after major surgery, I was diagnosed with Leiomyosarcoma, a soft tissue cancer. In the months - years even - leading up to that diagnosis, I experienced the exact opposite of shared decision making. Decisions were taken for me, not with me. There was no full discussion of the various options available, nor explanation of their likely consequences. In retrospect, I received the wrong course of treatment for me. In the end, choice was completely snatched out of my hands when the only course of action was emergency surgery.
You can go up or down after those kinds of experiences. I chose to become a volunteer and fundraiser for Cancer Research Wales and a patient and community leader for Velindre Cancer Centre. It helped me rationalise that what happened to me has also been suffered by countless others. When the opportunity presented to become a lay member on NICE’s committee to develop a guideline on shared decision making, I knew I’d found a way to make a difference.
The guideline will embed shared decision making into health and social care, making it the norm not the exception. It will promote leadership among patients as well as professionals. It will transform the doctor/patient relationship into a proper partnership. It will allow patients and doctors to agree on treatments that are tailored to an individual’s priorities and values. People will know what questions to ask and they will be equipped with the tools to make informed choices that are right for them. People will feel better about the process as well as the outcome.
I am particularly supportive of the recommendation for a patient leader to be appointed at board or senior management level, which should be the driving force for mainstreaming shared decision making in all healthcare settings.
Empowerment – choice – trust – respect – ownership – confidence – equality: this is the language of shared decision making. It’s about identifying ‘what matters to you’, not ‘what’s the matter with you?’
I feel privileged to have been a part of this guideline. There is a bit of me in it. I am so grateful to all of my NICE committee colleagues for giving me a platform and for listening to my patient voice.
Siân Phipps is Patient and Community Leader at the Velindre Cancer Centre.
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