I’m on a train to london. It’s a fixed journey.
I get on at Crewe.
I get off at Euston.
I could hop off at Rugby or Milton Keynes, saunter around, have a rest,
But my journey is to London.
And that is what I booked. Good.
Tomorrow I might walk a footpath.
Then I can wander, meander,
Choose when to stop, where to look, where to sit…
Take my time and go at my pace.
Life’s pathway is different for each of us.
We live in different worlds.
We see the same things differently,
Have different feelings about objects, events, other people…
And we each choose everything we do
And our choices are what we want at that moment
In that place
With those people.
So…pathways may be our own or those imposed on us.
But we can always choose which to take.
Then we come to medical pathways.
And this is where I have a problem.
Healthcare has pathways.
We get on a pathway when we see a doctor and are diagnosed with something.
We follow the route they prescribe.
We attend this clinic, that Physio department,
We get an X-ray, perhaps have an operation,
We do rehab physio, and…
We get off the pathway.
And that is fine for specific, easily curable diseases.
Pathways ensure we get consistent, best treatments, based on evidence.
But what if we have something that cannot easily be cured?
Something we have to live with?
A long term condition, or several?
Is there a pathway for us?
Like a dementia pathway?
Or a COPD pathway?
And what we have several LTCs?
Are the pathways the same?
Which do we take?
Indeed, do we have choices?
And, if so, how do we choose?
How do we know what is at the end of that path, how long it is, where it passes through?
It seems to me the model that health professionals use is the railway model.
It’s easy to navigate, it usually works, most people get off at the right station
And most get to the destination chosen for them.
Life and health are not simple though.
Most of us are going in several different directions at once.
And a lot of us at some stage develop several long term conditions which cannot be cured.
If there is no right destination for me,
No clear pathway to being cured and well again,
Which pathway should I choose?
Is there a pathway at all?
Let’s change this paradigm.
Let’s sit down together, you and me, when I am about to start my journey.
Let’s plan together where I want to get to.
Let’s talk about what I need to do to stay happy.
Let’s look at the choices I might make.
And let’s work out where I might get the sort of help I need, now and then, on my journey.
You may be able to provide some of that help. But not all.
So help me to find what I choose.
We’ll need some time together, although there is probably someone else who knows more than you about how to plan my journey. So I don’t need to see you so much.
So, health professionals, managers and the rest…
Don’t plan my life for me, just because it fits your models.
Don’t assume you know what I want or need.
Buy me the support I choose that will enable me to live well with my diseases.
Allow and he’ll me to choose.
It’ll be cheaper, I promise.
Let’s change the paradigm.
Put me in control of my life.
I’m working with a fantastic project called “Patients in Control”
To change the way services are commissioned.
Look it up.