the bottom line

I’ve been volunteering as a patient/ carer for some years. I’ve been thinking about what I do, especially since I discovered the wonder of epatients. There are many terms used to mark the difference between tea & sympathy and those processes which value the patient/ carer contribution to health and social care.

There’s nothing new about patient involvement, empowerment, engagement, person centred care, collaborative care- there are any number of think tanks, resources, big ideas. We can all access a wealth of information and learning on different ways of working.

Those are all methods. Ways of connecting. Methods of finding out what matters to patients and working out how to deal with that.  Together.

Because I like to know things, I sign up for online courses (the best invention ever) and have two starting soon. I will be a health care radical, rocking the boat while staying in it, and I will know something about measuring and valuing health. And the local health focussed ‘Leading in Partnership’ course is ongoing. I’m curious. I want to learn. I want to help move things on for us all.

‘Patient Empowerment’ is a theme of the UK rare disease strategy. That sounds interesting, but what does it actually mean? I asked a group of patients and carers a few weeks ago, and their answers were telling:

– I’d be able to ask my doctors questions.

– I’d not be at the back of the queue.

– I’d come out of the pigeon hole I’ve been put in.

It is accepted, even by government, that people and families with rare disease are often experts in their condition. It didn’t feel like those people I chatted with felt like their expertise was recognised or valued. We have some way to go before all patients and families feel like management of their healthcare is a partnership between them and their healthcare professionals.

Clinicians know (in many cases) a diagnosis, causes, prognosis, treatment options and outcome probabilities. When they don’t know, they need to collaborate with others to find out. Those ‘others’ should include the patients. Patients & families know their own experience of illness, their social circumstances, their own attitude to risk, their values and preferences. Together they can make appropriate decisions. And patients know their experience of the health and social care system- how it really works, or doesn’t, for them.

There must be opportunities for patients and families to make a difference, and not only to individual care. More places on Boards, interview panels, working groups; as inspectors, tutors, lecturers, mentors, advocates. We should not be seeing healthcare strategies created only for the system, but we still do. We should not see ‘involvement’ positions that make no effort to encourage patient/ family participation, but we still do.

The internet and social media have facilitated the development of knowledgeable, supportive patient communities, sharing experience and best practice from the around the world. Paternalistic ‘because I said so’ or ‘I don’t believe in that condition, it’s only made up for attention’ attitudes have no place.

It’s time for a fundamental transformation of relationships- sharing expertise and decision making. This is not about them and us; it’s about all of us working together, as partners in an improvement process.

It’s about the time and expertise of the patient and family being valued equally to that of the clinician or the manager.


A version of this was presented at the View From the Top seminar series in Belfast on 15 January 2015.



4 thoughts on “the bottom line

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