Low hanging fruit

Guelder Rose this autumn

Guelder Rose this autumn

I had a medicines use review today at my local pharmacy.

Now I have a lot of time and respect for the staff there.

They sort out prescription errors from the GPs.

They are open on Saturdays.

They are very nice, smiling, unfailingly helpful, can’t do enough for you, remember your name…

Sound familiar? Well not at the general practice it isn’t.

Anyway, when I picked up my last sack of medicines there was a big red sticker on it…

MUR (kerching £s)

I was asked if I would like a medicines review.

Thought for a while, and remembered that at the last one the pharmacist made a recommendation to take a pill in the morning not the night, so


I turn up today bang on time.

Could you just wait a few minutes?

Ten minutes later I see the pharmacist in the little, tiny, minuscule cell for eyeball consultations.

He brings up my details on the screen high up on the wall, which I can’t see.

has a whiz around with the mouse, takes a deep breath or two, then…(I paraphrase)

Phew, you are on a lot.

I peered round at the screen..after two minutes he reads the clue and turns the screen so I can see it if I move my chair so we can hold hands and rub shoulders.

We didn’t.

The mouse pointer flies furiously around the screen as he fills time and space thinking about his next move.

So I start telling him what each tablet is for, how long I have used it, whether it works…

Ten minutes later..

Wow you are in control aren’t you.

Do you smoke? Do you drink? Your weight? (Get out the calculator to convert stone to kilos, which I do from memory before he opens the app. Then he looks up to see chart on wall. I tell him my BMI before he gets there.)

Well, you are in control, aren’t you.

Umm, yes.

He pushes a piece of paper in front of me to sign (so they get their £28).

Smiles across the twelve inches, muttering something…and fiddles with the piece of paper.

I realise this could take some time if he is embarrassed to ask me to sign that I have had advice about my medication. (He should be.)

I sign, and he turns pretty quickly on his sixpence (sorry, twenty eight pounds) and departs.

So… What was gained there?

He didn’t even ask when I was taking the pills during the day (as previously), or if I was suffering any side effects, including from the Donepezil.

I think today the pharmacist picked the low hanging fruit and chomped it. And the fruit tree thought it had been ripped off.

I think community pharmacists are really important to local communities and to providing advice, guidance, simple medical treatments that don’t require a GP or even a practice nurse. Colds, coughs, bruises, cuts perhaps…that should be their low hanging fruit.

But you’ve got to trust them, and that pharmacist today just lost me. Luckily I know the regular staff and they’re great.

What will I do next year when asked to contribute £28 to their coffers?

Who is at risk? You or me?

I did a dementia friends awareness session yesterday. Delivered? Facilitated? Taught?

Anyway, we had eight lovely people, including two young men which was great, and we had a wonderful discussion of dementia and living with it, either as a carer or with dementia.

It’s interesting how sessions go with the flow of the people attending. We start the same way, introductions, what it’s all about, David Cameron’s dementia challenge, funding, etc, and then do the bingo. But then I start the explanations around each of the statements about dementia, and we begin to meander. (One of my favourite words.) They ask about situations, from their own experience, loved ones, parents, uncles, alive or dead now… What if? What should I say? What should we do?

I try not to provide specific answers…I’m not an expert, not a counsellor, not a doctor…but I give examples I have read about or that have happened to my family, or me. My brother in law thirty years ago, who sat at the dinner table and did not know how to use the knife and fork, but once helped to get started ate his way through the whole plate. My father in law, who forgot his wife had died after twenty seconds, and grieved again every time we told him. Which we shouldn’t have done because he wouldn’t have remembered if we had said she had gone to the shop. And it would have been a whole lot kinder.

That’s something that haunts me now. Should have known better, but hadn’t done the friends awareness!

The biggest discussion issue was about risk. And control. For the carer.

Should I let him go out for a walk? He might get lost.

Should we let him work with the cows? He has forgotten how to be safe with them?

Should I let her use a sharp knife in the kitchen? She might cut herself…

Well, my answer is just assess the risk and decide whether it is too high. Is it what we all put ourselves through anyway in our everyday lives? Like using a sharp knife to cook.

Would a cut really be that terrible?

Could I let neighbours and local shops know that if they see my husband wandering around it’s ok, but just ask him if he needs help, or a lift home. Has he got a note in his pocket of his home telephone number?

Get him a mobile home with an app for locating him, or to allow him to make emergency calls home (note… home, not 999).

My overriding message is…

Allow me to do what I want as long as I will not do harm to anyone else, and as long as I am not putting myself at stupid and really serious risk (like driving the wrong way up the M6). I want to live in my community. I want to meet people, wander around, go places, cook (good and bad meals), make tea (with or without tea leaves)…

Let me live my life. I just have a disease (well several actually, but you don’t stop me walking three miles in case I have heart attack).

Let’s get it out there…


I’ve been reading one or two blogs by others with younger onset dementia. Thanks to Kate Swaffer http://kateswaffer.com/author/kateswaffer/ for putting me onto these. I particularly like http://whichmeamitoday.wordpress.com/

Partly because Wendy’s in England, closer to home than many. Partly because she writes, like me, to make people aware and to influence change, partly because she puts in pictures, which I must start doing. (Means I’ll have to upgrade!)

In all the work I do to improve patient experience of health care the overriding reason for complaints and comments is to prevent anyone else going through the same bad experience.

I am in a slightly melancholic mood just now. Had a really bad day yesterday, exhausted. One or two forgotten things which I would swear I never knew but am assured I did. Realisation that in recent weeks I have slipped back a little, with more forgets, mistakes, uncertainties, imbalances.

And these trips to other worlds every night, many unpleasant, as real as any day of the week. Some mornings it takes hours to forget them, to re-learn that familiar people have not turned into hated bullies out to get me, or that I am not in a jungle avoiding huge death.

In this mood I wonder whether Wendy’s recent experience meeting other people with dementia at a conference would be good for me too. Whether I ought to find a peer group…but I know there are only a handful of other younger onset people with dementia in my Shropshire.

I helped set up our Shropshire Dementia Action Alliance this year, and chair it. Since starting, I have become the one member with a diagnosis! I sit on several Trust patient experience panels and committees, and raise dementia care repeatedly. I am co-facilitating CCG leadership seminars on how to commission services to put patients in control of their lives and health care. I challenge the Health and Wellbeing Board and CCG to do more to improve diagnosis and care for people with dementia.

I, like Wendy and countless others, am passionate about doing whatever I can to improve patients’ experience of care and of living with long term conditions, including dementia.

It’s what now makes my life worthwhile. It’s unpaid work. It’s what I get up for. And on the occasional days when I have no meeting, activity or event, I find it quite hard not to feel a bit aimless. Especially, in winter, when I can’t sit outside with a cup of tea, or do the garden.

So I also, on days like today, feel sad about my future. When I will be unable to go out to work, when fog will close around me. When I will not be able to find the tea, like yesterday, or lose my driving licence.

I want people to read my blogs, not to feed my ego, but to raise awareness and to get change.

So please, if you feel able to, re blog me, tweet me…

Let’s get it out there.

Please Do This for Me

I commend to blog to everyone. Read, digest, learn. You are fabulous, truthfulkindness

Truthful Loving Kindness

616 Blog PlzFollo 3in300ppi
Tru here:
The feeling of being surrounded by people
— but people so very DIFFERENT than I —
is loneliness … in a crowd of loved ones.

I APPEAR to be just my normal self.
No huge changes are visible.
All changes are beneath the surface.

You do not see change in my actions
so you assume no need to change YOUR actions.  … Yet.
— NOT TRUE — !

But even if you ask
I am not able to tell you in words.
… My words are not there.

The thoughts go around in circles — fragmented beyond retrieval.
Appearances are deceiving,
so YOU are the one who needs to take action:

I am consistently losing more ability to write,
but currently that is the best way to see what is going on,
for ideas on how to best participate in my life.

I know you do not see the…

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A trip to Grantham

I had such a good day yesterday, co-facilitating a seminar. Teaching again. Running group discussions, plenaries, facilitating.

Reminded me of those wonderfully enlivening times teaching, getting real learning going on in young, enquiring minds. Nothing like it. Except perhaps acting, because it often is an act and a persona.

I managed to get across the country on an unfamiliar route. My only little faux pas was going to the wrong end of the Starbucks queue at Stockport station and being called back loudly enough for all customers to look up. And then struggling a little towing my suitcase around the tight tables.

I’m a hazard with a suitcase nowadays. Seem to be unable to avoid bumping things everywhere, and over balancing. Walk in swerves, crash the case into seats on the train, into furniture in the B&B…just can’t line me, my case and everything else up. Perhaps having something on the end of my arm is asking too many bits of brain to work together.

Before the seminar started, I had to sort out dates in my calendar, working from a spreadsheet that was not in date sequence. Back and forth, forwards and backwards…found it very confusing, couldn’t quite keep a grasp on the task. Gave up in the end and left it to someone else to sort out.

But then during the seminar I was buzzing…listening, working out dynamics, how to intervene, question, steer discussions…focused absolutely on the subject. Getting commissioners to listen to patients and co-design services with them. Change their paradigm of health care.

“Patients don’t want to take responsibility. They just want to be fixed.”

Hmm. Have you asked them if they want to have a better life, be a bit more active, feel better? Have you asked them what their lives are like? What barriers they have? What makes their self management so difficult? If they have any real understanding of their illness?

Shared decision making. Agreeing life goals. Patient activation. There’s so much that can change and will make a huge difference to people’s lives. If only we ask the right questions, look through the other end of the telescope, turn the mirror around.

And that’s difficult. It means unlearning a lifetime’s habits. The day to day, year on year routines, grinding pressures, seeing those same faces coming back again and again…it’s not surprising clinicians lose sight of what’s on the the other side of the trees. The person. Their patients’ lives.

And that’s the challenge for this project. Put patients on control of their health care, their lives. Change the paradigm.

And I am so proud to be involved in this.

Later we all said goodbye till next time, in ten days, with another CCG.

In the taxi, half way to my B&B, I remembered I had left my suitcase at the event venue.

About turn.

Hello, I met you on the train…

Hello, I met you on the train the other day,
I called out, walking round a local lake.
He walked past and on.
I turned.
Hello, louder, we met on the train.

He stopped and looked round.
Slightly confused.
Yes, we did.

How are you? ….
Fine, etc…
Well, see you again sometime.

My wife, cringing…
Have you totally lost all your inhibitions?

But we had a conversation on the train. He’s a really nice guy.

Yes, I suppose I have lost some, but not all.

In fact, on a good day I say hello to lots of people I meet on my journeys.
Mostly they smile warmly, pass the time of day, and we get on with our travel.
One or two probably wonder what sort of a nut I am.

I haven’t become that passenger you really don’t want to sit opposite.
Can’t stop rattling on.
All the way, an hour or more…
I just like to say hello, smile about an overheard remark or silly announcement, or will I make my connection.
I like to belong to a community.
To make contact.

And, yes, I have lost some inhibition,
That voice that stops you saying what comes into your head,
The double entendre about the actress and the vicar,
The bad joke that for some reason I find funny but most don’t,
Saying hello to someone you met on a train and who is in a different world…
Aren’t we all in different worlds?

In meetings I sometimes wonder what would happen…
If I said what was in my head.
Perhaps one day soon I will.
It’ll just pop out.

It used to pop out quite a lot before I found…ta daa…
I found it hilarious when I wet my trousers soon after a prostate op,
So I let people know at a dinner party.
Oh how I wish I could turn that clock back.

I made the “double” aside a few times in board meetings at a charity…
Red faces all round.

I’m told I’m better now, by people I trust.
I am just more aware of good manners.
Of not assuming my humour is automatically shared by others.
Turning on the brain filter.

Some people with dementia lose that filter.
I’m probably one of them.
I suppose that part of the brain must just switch off,
Or become impossible to access.
So we say whatever comes into our heads.

So forgive give me and at least smile if I say
As the actress said to the vicar
At the wrong moment.

Don’t tell me to slow down

I met my community outreach sister last week to review my situation, and to formally pass my donepezil prescribing to my GP. The outreach team at the Memory Service have responsibility for me for three months after diagnosis, then will visit me every few months or year, depending on the progress of my dementia symptoms.

She’s a lovely woman, with excellent empathy and listening.

But, as I have said before,
I really don’t like the aftermath of these meetings.
Whether with the memory service or a GP
(Note, A GP, not MY GP).

She advised me, as nicely and gently as humanly possible,
And for all the right reasons from her point of view,
To be careful of doing too much,
To do less,
To avoid tiring myself.

And I said
When I get tired I stop, miss a day, whatever,
The beauty of doing unpaid work.

But it has made me question what I do with my days.
Even, oh dear, what I am doing with my life now.
Should I be working through that bucket list?
Should I be putting my feet up, reading, listening to music?
Going out once a week to some activity?

Well, no.
On reflection,
A phrase I use more and more,
I want to be busy.
I want to work.
I want to do worthwhile things that change the world
A little bit
And make patient care and experience better for everyone.

That is what makes my life worthwhile at the moment.

Sorry. This all sounds a bit saintly and precious.
It’s not really.
I just take the opportunities that come my way,
Make my luck, I suppose.
And that’s what everyone should do.

Live. Do. Be alive.

To hell with dementia.
Yes, it’ll probably get me in the end.
But not until I’ve done stuff.
And I could just as well have a stroke or heart attack any day.

If I do so much that I get tired what does it matter?
Who does it affect?
Me, and my wife.
Possibly my ducks if I forget to feed them one morning. Oops.
We must get over this don’t do too much guidance from our experts.
People with dementia, or anything else, know just what they can and want to do.
Social engagement and activity
These are essential to wellbeing.

I am not the first person to say these things.
I learn from others, and add my take.

I want to take risks.
I don’t want a safe life.
I want days that are interesting, entertaining, active,
Laughter and intellect,
Light and serious,
Days that lead to satisfied sleep and waking up to another fresh day.

So don’t tell me to slow down.
Let me manage my life and my health.
I’ll ask you when I need help.
Just be there for me, waiting.

Better dementia care

What amazingly good advice and wisdom for carers of people with dementia.

Teepa online trainingTeepa Snow is a dementia ‘expert’, and one I have great respect for. The image comes from her website, and is part of a promotion called Teepa Online. With permission, I have added her 5 tips for better dementia care as todays blog, and I have added one which I believe belongs at the top of her list… I definitely recommend you go to her website and join her newsletter mailing list.

Firstly, stop talking about PEOPLE with deMEntia as challenging behaviours

Teepa Snow’s 5 Tips For Better Dementia Care

© Teepa Snow, Positive Approach, LLC

Teepa Snow is a dementia care and education specialist whose teaching style has won her fervent admirers among caregivers North America. An occupational therapist by training, she has been called “the horse whisperer of dementia” because of her remarkable skills.

Her personal mission is to better the lives of people with dementia—as well…

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