Patient engagement - we need to live it, not talk it

Patient engagement is much talked about. Thankfully. However, casting my mind back 20 years when organising The King’s Fund’s Promoting Patient Choice conference, I recall having no difficulty in finding two doctors to get up in front of the 300+ audience and argue that ‘patients should do what they’re told’.

Some healthcare professionals may still think and act like that, but few, if any, would now get up on a stage to proclaim it in public. I’d suggest that’s quite a far way to come in 20 years in terms of reversing medical paternalism.

But it’s not far enough.

The call for patient-centred care, 6Cs, experience based design, co-production, collective and individual participation, patient experience, etc, etc, has never been louder. That’s great for those of us who have worked in the field for a long time. And even more importantly for patients, for staff and for the system (as the evidence overwhelmingly proves). But it’s also frustrating.

Why? Because in some senses, the gap between this louder rhetoric and real practice has got wider. Whether it’s self-managing my own two long-term conditions, being an informal carer for two mental health service users in Salford, or caring for my own loved ones (resulting in me being in three different hospitals over the last six days), it’s just not happening on the ground. Or at least the ground I’m treading on.

I have experienced no care plans, no patient decision aids, no health coaching, motivational interviewing nor appreciative enquiry. There are some leaflets. There is some communication. But this is mainly transmission. A protocol to get through. A monologue not a dialogue. A mouth, sometimes a rushed smile, big hands but no ears. A heart that too often seems so deeply buried that, when one does appear, it’s sadly the exception not the rule.

As a clinician and management consultant, the full potential of ‘individual participation’ (to coin the phrase within NHS England’s laudable Transforming Participation Guidance) has yet to move beyond a few well-intentioned early adopters.

So how do we get better – both patients and the people/systems that treat them?

It’s actually really easy. And that’s what makes it so hard.

It’s simply about becoming people again. It starts with basic things like ‘Hello, my name is...’ (hats off to Kate Granger). Names are part of what make us human. The most successful encounters over my past six days as a carer/parent/patient started when the staff members introduced themselves. When you say your name, you usually smile. This personal information and associated positive body language gets the whole conversation off to a great start.

Next, the caregiver asks the patient and also the relative carer, ‘How are you doing?’ Next, ‘Is there anything you need?’ Then they go on to outline what they’re there to do (hopefully with the patient/carer’s blessing/‘informed consent’).

But this is where things fall down. Staff know what the process is. But too often – far too often – patients and carers simply don’t know what’s supposed to happen next. They know how to make a cup of tea, they know how to make retail choices. But they don’t know what the stages are in their care journey/pathway/experience. And no one has told them.

So they’re left in the dark with no or very limited expectations: How long am I supposed to wait here? What’s happening next? They said they’d come back and tell me what I have wrong. Without setting expectations, patients don’t have a benchmark to know what is good or bad, what’s right or wrong, what’s too long a wait or just right. No wonder 64% of the nearly 1 million patients reported in the December 2013 GP–Patient Survey state they are as involved in decisions as they want to be; yet only 3% have a care plan. They don’t know what they don’t know.

Staff, therefore, have to think of patients as people and not just body parts (the MI in bed 6; the liver in bed 12, and so on). Soft stuff – such as dignity, respect and compassion – is important. But we need to go deeper and better our understanding of what makes our patients tick. We need to reflect (and record?) the following with regards to our patients:

• health beliefs – is diabetes just the 'touch of sugar' that Granny had, or the disease that took Dad too early?
• are medicines miracle cures, or poisons foisted on us by a profiteering, disease-mongering pharmaceutical industry?
• what’s their level of health literacy eg when telling a patient to ‘choose a hepatologist’ – what is choice, what’s a hepatologist, does the data exist and is it presented in a digestible format?
• what’s their level of motivation – can they bothered with health or are they too busy with even more basic needs such as food, shelter and warmth?

Without insight into and measurement of what our patients are really thinking and capable of, and helping them set expectations, we’re firing blanks at the ‘self-management’ target with our eyes closed. We’ll talk it, but we won’t live it. And neither will our patients.

So lets’ go back to being people. To being honest, caring and communicative. Simple, eh?

Mark is a clinician, management consultant and patient advocate, www.twitter.com/MarkDuman