Over the last year I have read more about integrated care than about any other health and social care topic, and even though I don’t read much more than 5% of what is published on the topic we are talking about what, in hard copy days, would have been called “forests of paper”. I am sure that in the digital world, there are several terabytes of disks filled with the stuff.
Over the next few days I want to make some comments about what has and has not been achieved in this area of health and social care in the past year, but first some comments about language.
Because so much has been written about integrated care, I want to say a few words about the language we use to describe the changes we want to bring about.
Quite rightly much is made in making the case for change for integrated care, of the bad patient experience created by the current model of fragmented care. Different specialists feeling they are the only doctor the patient sees; different nurses asking for the same back story to be outlined by the patient; different social care staff coming at different times to carry out un-coordinated care. At best it’s merely bewildering, at worse it has a bad effect on patient well-being.
Nearly every local case for change in integrated care talks about patient experience as a reason for change before resources are ever mentioned.
Given the recognised saliency of patient need in this set of changes, it’s a great pity that the language we use to describe what we are doing is still a language dominated by our task and not by language that patients can understand.
About a year ago NHS England commissioned National Voices to carry out a discussion with patients to find out how they and their carers describe the changes that we call “integrated care”.
The very fact that NHS England asked for this to be carried out was a recognition that the current method of description and explanation needed change. Commissioning the work was a good thing. But if you trawl through NHS England’s web site you will see that the changes are still referred to as “integrated care”. They paid for a patient centred piece of work to be carried out and then ignored it in their own practice.
What did National Voices actually come up with? (Here’s the link to a presentation)
After extensive discussion they found that the phrase that made sense to the public was “person-centred coordinated care”.
Integration is what the system needs to do.
Coordination is what the public need to experience.
The key wish for patients is that,
“I can plan my care with people who work together to understand me and my carer(s), allow me control, and bring together services to achieve the outcomes important to me”
Contained in this sentence is the reason why language is so very important and why who is in charge of the language is such an issue of power over practice.
This sentence is reasonable. But it’s pretty obvious that it describes a way of developing care which puts patients in charge.
It starts off with I can plan my own care. Whilst this is ideologically what the NHS and social care claim to want, it fairly obviously implies that organisations that currently plan patient care around their needs would no longer be in charge.
With people who work together to understand me and my carer. Again ideologically it’s what everyone says they want – of course we work together to understand the patient and their carer! (Well no, that’s the problem isn’t it?)
Allow me control… Again the wish is that patients should have control, but the reality is that services are not organised around that concept.
…and bring together services to achieve the outcomes important to me. The clinching argument here is that the services would have to be organised around outcomes that are “important to me”.
So what National Voices have wisely done is to ask patients how services would be different if they were organised in their interests.
Unsurprisingly that resulted in not only a shift in language but a shift in the power that language describes.
And that’s the reason, a year later, we all go on talking about “integrated care” and not using the language that patients want to use to describe that change.
This is the rather sad conclusion. Even when the NHS genuinely wants to do something that is in the interests of patients and even when we explicitly find out how patients want to describe these changes we still can’t bring ourselves to put it into practice.
Our own language, our ability to talk to ourselves internally is much more important to us than our ability to communicate with patients.
And the reason for that is that we know once we start using the language of patients to describe what we should be doing, we will cede a lot of the power that we have over their lives to them.