Wellbeing My Way

Today I have been to a great day with National Voices, working on their “Wellbeing my Way” project. I was one of about twelve “experts with lived experience” of long term health conditions, of all sorts.

I continue to be overwhelmed by the day to day resilience and determination of so many people with health difficulties. It is an honour to meet and work bedside them.

Today was about getting the voluntary and community sector organisations fully involved in enabling people to be as successful as possible at achieving independence, optimism and control.

It was about how the V&C Sector will be developed (and commissioned) to provide the health coaching, health and care navigation, and shared decision making that will support people with long term conditions to make

The right informed choices FOR THEM.

Wellbeing their way.

Not the commissioner.
Not the health and wellbeing board.
Not the GP.
Not the consultant.

But informed and supported by all of these.

We want people to be supported through V&C service to have:
More optimism for the future
Greater independence
Greater control over their lives…

It’s not a new agenda.

It’s not new thinking.

But it is part of a movement that is picking up momentum in Britain and around the world.

The paternalistic model of health care needs to change.

(But so does so much more.)

Healthcare should be wrapped around the patient, providing what they choose, after informative, shared discussions and decision making.

Commissioners, doctors…please get this.
Let us take the risk.
If we choose hypnotherapy over anti-depressants
If we choose choir singing over counselling
If we choose not to take injections of chemicals that you know may do us good but we know we don’t like…

Work with us.
Respect our choices.
We’ll take that risk.
And you will see us less often in your surgeries and A&E.
And you will save your time for those patients who need urgent, defined care and treatment.

We are on the crest of a wave that is changing healthcare in Britain.

We need to surf it, take others with us
Change hearts and minds

Change the paradigm of healthcare.

Simon Stevens agrees!


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.
Again, good.

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
Every moment
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?

What then?
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.
And easier.

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.

Dementia Sundowning Concepts from Karen Francis

Really interesting views of sun downing and how to help people through these times.

Truthful Loving Kindness

SunDng frm KarenF 6in300ppi
Ideas about “Sundowning” from PWD Karen Francis, friend who worked with memory impaired before becoming impaired herself:

What is Sundowning?

SUNDOWNING – Sundowning is a phenomenon that is associated with increased confusion resulting in a variety of behaviors that you may not see other times of the day. It can happen with any form of dementia. Up to about 50% of persons diagnosed with some form of dementia may experience sundowning. I have my own personal theories about why it happens when it does. Keep in mind that for each person, sundowning may occur at different times of the day – it’s called sundowning because it happens later in the day for a lot of people.

Some of the symptoms exhibited are:
*Increased confusion
*”Exit seeking” (wanting to leave or go home-even if they are home)

The specific cause for sundowning has never been proven. Many…

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More Thoughts on Communication in Early Stages

Keep writing your insights for us all. You’re helping people understand how it is to live with dementia. And through understanding you comes compassion and empathy for all.

Truthful Loving Kindness

616 Blog doors 3in100ppi
In the last year or so I don’t communicate one-on-one very well.  It has become strained and costs a lot of energy.

A common dementia symptom is my sound-processing disorder; trying to unscramble numerous connected sounds into words, sentences and thought sequences, in order to understand what someone is telling me costs me a lot more energy than it used to.

Trying to find words best representing my thoughts is no longer second-nature either; it is a lot of work.

I enjoy time spent with you but:

Do not expect sustained conversation with me.  Bring one or two slow-speaking (and slow-moving) friends and you can chat in my presence – letting me just speak up occasionally rather than requiring me to pull one-half of conversation.  Or maybe we could “chat” while doing something else, lessening my burden for carrying a conversation, like while walking, or gathering firewood, or washing dishes…

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Get back in the jigsaw…

I’m having a bit of brain fog.
Yesterday I couldn’t get things sorted out in my head.

I had a couple of meetings to prepare for
Reminding myself of what I wanted to raise when I asked for these meetings.
Always a good idea
Knowing why you are going
What you are going to ask or say.

Don’t know why, but the bits just would not stick together.

This is how it felt

A jigsaw lies on the table.
You’re looking at it
It’s not quite complete but pretty much…

And a piece floats up and away
So you reach out and gather it back and
Replace it.

And as soon as it’s in place another piece
Floats off
And another
And soon you are stretching all directions
High and low
Catching the pieces before
You lose them.

Yesterday the pieces didn’t really settle back at all.
And during the night they were all over the place.

Told them to get back…
Why were they doing this to me?
Why wasn’t I in control?

Yesterday I scraped my car when parking.
Against a wall
(hasten to add)

The space was just too tight to turn into
I misjudged it and there was a
Slight, soft, gentle

That’s ok, I thought, won’t be much damage from that.

And I also wondered why I had done it.
And would I do it again?
And tomorrow?

Was that brain fog or confidence
Lack of

I don’t know.

But it is unsettling,
When the jigsaw
Floats apart
And you just can’t quite get it

The marks on the car are bad.
The dreams were bad too.

Make my day, go on

Why can’t you join yourselves up?

Oh My God.

Just been to physio (different from last one!) for first gentle exercises after shoulder op.

Actually, it’s doing really well I think,
And so does she.

How does it start?
Can you guess?

I just need to take some notes first.

I sit on a chair
She puts a small table between us
And she starts the form…

Oh and this is after the first form…
Could you just fill this in while you are waiting please?
On a scale of 1-100 how do you feel your health is today?

Well, I have about six long term conditions
I have had a shoulder operation a week ago
And it hurts a bit
And I have dementia

I think pretty low on the scale

Am I being pathetic? Or pessimistic?
Should I be glass half full?
I feel quite good today, but my health is
Pretty awful
Every day.

Stupid stupid stupid question.

Oh and the physio didn’t look at it later!
Why why why do we do this?

Back to the physio and her forms.

What conditions do you have?
Heart disease?
And so on

And what medicines do you take?

That’s enough.
I cannot keep doing this.
In fact I’m sick of repeating all these things to every health person every time I meet one.

I say don’t you have any way of seeing my record, in this hospital, where I had my operation?
Can’t you share my records?
Why do I have to repeat this lot every time I see anyone?
Same hospital?
Just down the corridor…

She understands and agrees
It’s not her fault, I know
She’s lovely, really, and probably as fed up with this as I am.

We agree it would save her (and me) time if it was there for her to see
Before the consultation started…and she and others could prepare
Before meeting me

Well, I don’t know what medicines I’m taking.
I mean I could rack my depleted brain, but…
I do know, of course,
It’s in there
But there is zero chance of finding them all in that dark, confused cavern.

Lightbulb moment.

It’s in my emergency health app.
On my phone.
And out of my pocket I produce my list of medicines.

You could even see it if I were unconscious
As long as you think to look.
So please do.

In the meantime.
The lot of you.

Get connected and online and digital.

Tomorrow will do.

Make my day.

Slipped Further into the Mire

Truthful Loving Kindness

Shaving cream!  I have slipped further and my compensatory tools no longer work.

I was using a matrix to track when I sent Tweets, in order to avoid duplicates and triplicate.  Now I am having too much trouble trying to use Excel that the tool is not helpful.  I am lost in the spreadsheet itself.  Why am I here?  What was I doing?  Instead of every few minutes getting lost, I can’t even get started!

Alarms no longer work because I don’t even know it is my own alarm, and I really don’t care to find out what it wants me to do; I just want the noise to stop.  Alarms have helped for over 5 years, but no longer help now.

Reading aloud no longer helps enough for me to understand sixth grade novels.  It worked for about six months.  I am in the middle of book.  I remember…

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My New “Normal”

Truthful Loving Kindness

Today is better than yesterday. As a dementia patient I knew the day would come, but yesterday was the first day that I couldn’t understand my paragraph, when I look back on it to make sure it is accurately reflecting my thoughts. The panic is not quite so disruptive; my upset stomach is settling down and I am not crying quite so continually. It IS what it is, and I will continue to write … so recognize, grieve, … and continue writing.

What if my portrayal is missing key factors, distorting the message I am trying to convey? Am I gliding from thought to thought or are there chasms between them? Am I mixing my tenses? I don’t know because I can understand a phrase, but that portion is gone by the time I attempt to understand the next portion of sentence or paragraph.

… YES!! ((jumping up and down…

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Alzheimer’s Australia Language Guidelines

The following is a more comprehensive version of the Alzheimer’s Australia Dementia Language Guidelines 2014. I have uploaded it as a pdf Alzheimer’s Australia full language guidelines 2014 and included each page as an image below. I feel like people with dementia have worked hard to be heard, Alzheimer’s Australia have really listened, and together we hope to bring about changes to the language being used when referring to people with dementia, ensuring it is respectful and non offensive to the majority, even though there will always be some who feel differently. Collectively and collaboratively, I hope we can impact positive global change in the health care sector, service providers, governments, the community, the media and in research so that no longer will people be labelled as things like ‘aggressives’ or ‘wanderers’.

Alzheimers Australia full language guidelines 2014_Page_1Alzheimers Australia full language guidelines 2014_Page_2Alzheimers Australia full language guidelines 2014_Page_3

Alzheimers Australia full language guidelines 2014_Page_4Alzheimers Australia full language guidelines 2014_Page_5Alzheimers Australia full language guidelines 2014_Page_6

Alzheimers Australia full language guidelines 2014_Page_7

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It comes in waves.

Standing on the shingle
Or a harbour wall
You look across the sea surface
You watch waves
Small, large, swelling, sinking, rolling
And you see a pattern

There’s a cross current that draws in one direction then the other

A bit like a swimmer’s arms crawling one after the other
Not quite aligned
But going in the same direction

And from the harbour wall
It looks fairly predictable.
You spot a couple of small waves closing together
Then a flatter patch
And you stay at the edge because
You think you know what is coming and you feel

You look across at the fishing boats and the other people looking out

There’s a couple holding hands
A fisherman down on the sand mending his nets
Getting ready for tomorrow morning

Seagulls wheel and cry around you
Skimming the surface then hovering above the house roofs
Hanging in the gusting wind…

You’re knocked sideways by a rogue wave.


Oh my God

Where did that come from?

Soaked through and dripping…

You looked away,
You let your guard down,
And it jumped on you and won’t let you go
And you run backwards, backwards, further backwards
And the spray follows you and won’t let you go

Well that’s how it is.

Out of nowhere, the perfect wave.

You can cope with little things.
You know they are there, bubbling gently beneath the surface,
They exist, they swirl a little, they come and go,

But now they have coalesced and
Swamped you.

Yesterday it was fine.
Doing stuff
Living well

Today it is overwhelming.

And you know somewhere that it will pass,
That tomorrow will be ok again.
Back to normal

But just now
What are you thinking?

Where has this come from?
Why today?

It’s not self pity.
It’s not melodramatic.
It’s not weakness.
It’s not because you can’t pull yourself together.

It’s because you are human.
You’re a person.

And you need a little help at times
To get through the bigger waves
That engulf you now and then.

That’s what supporting people to self manage and sharing care is all about.

You can give me information
Expert programmes

But what I need is what I need
Not what you think I need.

Ask me.
Listen to me.
Work with me.
Invest a little in me now
Save a lot later
And help me live well with what comes my way.
My long term conditions
My life.

Put patients in control and help them live well.
We’ll cost you less and
We’ll be happier.

And the waves won’t drown us.