In the last few days I have been to a couple of conferences where the topic of bringing an enhanced patient voice to both the practicalities and the policy of NHS health and social care were discussed. And I have, as a consequence, relearnt the lesson that I stupidly sometimes forget over the years (even though I warn others not to!). You need to say things over and over again. The NHS is a big place with lots of people in it so it’s not surprising that messages need repetition.
My repeated message today is to pay attention to a National Voices publication from May 2013 – just five years ago. At that time National Voices, together with Think Local Act Personal, were given a commission by NHS England to find out how the language surrounding all of the work being developed to integrate services could be made to make sense for patients. How did the public want to talk about it and what did it mean to the public themselves?
In May 2013 they published a set of statements that in a short have become known as the I Statements. As in “what I want”. Over the last five years I have been in nearly a hundred different conferences in many different places discussing integration. In most of them the NHS and social care were genuinely trying to find out what local people want, but in very few of them do they start with the ‘I statements’. Of course local issues are different, but I have not been to many places where they would have not made a good starting point.
So let’s run through them again and then I’ll explain why – over the intervening five years – I have come to love using them as a provocation more and more.
The overarching summary redefines what patients want from integration.
Integration is something that services have to do, what people want is “Person centred coordinated care”.
“You integrate by all means but wrap that coordinated care around what I, as an individual, need.”
There are then a generic set of I statements around each of the crucial elements of care,
|My goals/outcomes||All my needs as a person are assessed
|Care planning||I work with my team to agree a care and support plan|
|Communication||I tell my story once|
|Information||I have the information and support to use it that I need to make decisions and choices about my care and support|
|Decision making including budgets||I am as involved in discussions and decisions about my care, support and treatment as I want to be.|
|Transitions||When I use a new service my care plan is known in advance and respected|
As I say I am sure that sometimes in local discussions about person-centred coordinated care there will need to be consideration of local needs, but as a starting point these still have a strong resonance.
They are very straightforward and most of us who have been patients or service users, or have relatives who have been, can relate to them.
So they make sense. They are very useful reminders to put on the wall of any multi-disciplinary team. This is what the public want.
But even more than that – they are so reasonable. It really doesn’t seem to be asking for too much to have your care plan created with your team and agreed by you. And it literally isn’t too much to only have to tell your story once.
And yet, and yet. These very reasonable every day requests from the public appear for the great majority of the NHS and social care to be impossible to meet. I have been to places where they see it as a great step forward (and it really is) when they whittle down the telling of the story to three times.
These are places where they are proud (and given what happened before they should be) to have whittled down the number of one stop shops to three. (And yes three one stop shops is better than eleven random offices but it’s still not one one stop shop).
So what I love about these statements is they are at the same time both very reasonable and very radical. The level of organisational fragmentation that the NHS and social care have reached means that when the public ask for something quite logical – it’s really hard to do it for them.