“Both are experts”. This is the change we need to see in the relationship between patients and clinicians. Only then will patients become “far more active participants in decisions about their health and healthcare.”
This is a core message from another round of consultation in the Liberating the NHS series – this one uses the slogan of our times “No decision about me without me”. This is a broader and less formal definition of shared decision-making (SDM – to add your algorithm list between S&M perhaps?) than is current in academic circles and makes the point that SDM is not the be-all and end-all of patient involvement which covers any aspect of their care and treatment.
The way we are going to notice this as patients is that we will hold in our hand a piece of paper – as pledged in the NHS Constitution: a care plan or at least a note of what has been agreed at any care planning session.
So how might this work in practice? How would the culture be different if the promise of the new landscape was realised? We can imagine the dialogue running along these lines – rather than patients saying “tell me what to do, doctor”, the clinical environment would be one in which clinicians were more likely to hear patients say early on:
“I’m the expert on me. You’re the expert on [the illness]. I want you on my team; you need me on yours. So let’s work together to figure out a care programme that works for me as a person with a real life who is also living with this condition”
This will not happen without a lot of work. One other element needs to be added to the mix. Can the expert clinician contribute to make the expert patient more “expert”? Patients and their leaders need a hand to assume this potent identity as an equal partner in the care plan. What can be done by institutions and professionals to strengthen the patient or lay person so that they fulfil their role as assets rather than being a drain on resources or a problem to be managed? Do the Royal Colleges have a role here? They have committees and structures looking at patient interests and issues with varying degrees of relevance and success. National Voices have tabled a new narrative for person-centred coordinated (“integrated”) care stating the goals and outcomes from the patient/carers perspective as:-
- All my needs as a person were assessed and taken into account.
- My carer/family had their needs looked at and were given support to care for me.
- I was supported to set and achieve my own goals.
- Taken together, my care and support helped me live the life I want to the best of my ability.
- I was in control of planning my care and support.
- I could decide the kind of support I needed and how to receive it.
Something to work on in the New Year.