Bostin…

Dre-e-e-e-eam, dream, dream, dream, dre-eam….

I could not remember any names

I couldn’t remember what I knew

I had no ideas about what to do

But I knew some of the people I was with

And I knew I should know

Who they were

What to do

Where to go

What to say

And that was just a dream.

An unpleasant dream, with an unpleasant feeling when I woke.

And I couldn’t remember which day of the week it was.

I was in Dudley yesterday but was that Monday or Tuesday?

Or is it the end of the week already?

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On my way into town I got it back.

Wednesday.

So…was that tiredness, or dementia, or exacerbation of other conditions?

I have taken to marking Wednesday with Prime Minister’s Questions, except that I keep forgetting to listen till after lunch.

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And yes I missed it again today.

Yesterday at the Dudley Dementia Action Alliance I learned that they have seven dementia navigators working in the borough.

Brilliant. From diagnosis to, um, the end, consistently the same person who gets to know you and becomes your friend when you need help or support or information.

At meetings, with claims, navigating the NHS and social care systems…

How good is that?

Bostin.

So remember, commissioners, you can make our lives a hell of a lot easier and better by paying for a few good souls to support us.

And you’ll be keeping us out of hospital and other care services.

Keeping us in our communities.

In our dementia friendly communities, doing the things that make us smile and get out of bed in the morning.

And perhaps providing me with a calendar clock!

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This is my dementia. This is my week.

This is my piece for dementia awareness week.

This is my dementia.

This is my week.
…………

Limestone grikes and clints of the Burren, Co. Clare, Ireland - pavements with crisscrossing cracks

Limestone grikes and clints of the Burren, Co. Clare, Ireland – pavements with crisscrossing cracks

Monday

Found an email inviting me to post Dear Dementia notes this week. So I did one.

Later I went to my local hospital’s dementia steering group.

They’ve got the Butterfly scheme, but it needs to be relaunched.

They’ve got This is Me passports, but they’re not being used.

They do 75+ emergency admission dementia assessments but the positives are probably not being followed up by GPs.

They’ve appointed 2 FTE dementia workers, but they spend two thirds of their time doing the above assessments.

They have pink boxes for patients’ hearing aids but only two wards out of 26 (?) use them.

They’re rolling out dementia friends sessions to admin and catering staff…great.

They’re trying, but there isn’t enough resource. Not enough people share the passion for providing the best possible care for patients with dementia.

In the evening I read a piece on Twitter about gardening and dementia. It’s good for us. It’s good for mood, reducing confusion, getting exercise, being in a natural, quiet world of our making.

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Tuesday

Posted my daily dear dementia note.

My community dementia sister for under 65s comes for our three monthly meeting. We have a good chat about how I’ve been, my driving, medication, mood, activity.

We discuss cognitive stimulation sessions that I could attend. We agree no thanks. I get plenty.

I decide to stay on with her service instead of moving to the over 65s community team after my birthday.

Later I get a phone call from the Alzheimers man who runs our SURP group in Shrewsbury. Do I want to attend the Friday’s meeting?

Nope. I’ve been going since it started last year but I’m sorry to say it isn’t doing anything positive for me. Perhaps the six of us are too different in our capacities. Perhaps the subjects for discussion don’t turn me on.

SURP is a great idea. But I think I prefer the Liverpool model, (not that pathway), where they have 40+ people with dementia and carers attend for a social/tea party each month, and from whom reps are chosen or volunteered for local health and social care working groups.

Then I gardened. Planted runner beans, sweet peas and chrysanths.

Felt very good in the evening.

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Wednesday

I’ve posted my Dear Dementia note, for awareness week.

After a walk with the dog around the mere I’m off to the local health economy dementia steering group.

And at the meeting…revolutionary stuff. The chair proposes that a person with dementia and/or carer should chair it! Excellent. Great way of putting patients and carers at the centre of what we do, rather than the organisations.

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Thursday

Posted my note to Dear Dementia. I’m getting quite a few retweets of these.

Off to local hospital to present Dementia Friends session to 20 ish staff and local people.

I’m feeling tired this morning, and I couldn’t find my file of notes and resources before I left, so I got really really grumpy. And I forgot to shave…again. Becoming a regular thing now.

So I wasn’t in the best of places to host a session, my first in four months.

And predictably I got lost in it. Long blanks. What next? What next?

So I went personal, about myself, my brother in law, father in law…and got back into the bits that bring it to life. That matter. What it’s really like.

And what you can do to help people live well. It seemed OK after that.

Later I felt drained, annoyed, and a little paralysed by the first time I’ve really dried in a session. And tired, so tired.

Then I caught the end of a programme about dementia by Angela Rippon. Fascinating bit about how a brain cleans itself during sleep, and another about the benefits of brain work…learning languages in particular.

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Friday

Dear Dementia…done.

Big day today. Long meeting at a local hospital about changing the culture. Followed by another about my appalling hospital care in March after an operation.

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So that’s that. All done.

Tomorrow there’s a Tour De Mentia cycle ride in north Shropshire. I’m doing a dementia friends session at one of the planned stops along the way.

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Saturday

Dear Dementia, six days closer to a cure, six days less till you take me. Which comes first? Continue reading

Shropshire’s future health care solution: the final one

Confucius say, ask the wrong question and you’ll probably get the wrong answer.

What are the key issues that require answers or at least proper detailed work?

1 What is the model for increased care in the community and primary care sectors in 2020 when 10% (?) acute activity is moved out of the acute sector?

2 How much funding will be required? How many staff and other resources will be required? And how is it planned to achieve these?

3 What exactly is the clinical model for acute care across two sites?

4 Is it really acceptable to the population that people living in west and south shropshire and east Powys will travel up to 50 miles to ED?

5 What actually is an urgent care centre? What degree of acuity will be dealt with there? Give examples that the public will understand. COPD exacerbation? Broken arm? Chest pain? Drug overdose? Bee sting? Twisted ankle? Head pain with confusion?

Then perhaps there will be an understanding that people can work with.

As it is, they cannot expect people, whether GPs, clinicians or Joe Public, to sit back and agree to walk into a foggy, dark night without a map.

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Futurefit started with bottom up workshops about what the future provision model should look like, and where and how the different conditions should be treated and looked after. That was very promising. Bill’s LTC group did great work.

But that’s disappeared. And it’s now become an accountant’s model, with precious little solid reliable evidence to support the proposal.

Julian Povey has just said on radio that SATH may now just move ahead with its own reconfiguration because it has to resolve its staffing and financial challenges. Can they do that without CCG and Treasury/NHSE/NHSI approval and without public consultation? They could do some of the stuff David’s been suggesting for years, but not the new buildings work. But there would be uproar.

Julian also confirmed that shropshire could be seen as a basket case (my words). Yep. On the nail.

I know that the need for change is urgent, but (as Julian also said) it’s more important to get it right than to meet deadlines.

I really urge all involved to resurrect the Futurefit workstreams, including the community and primary elements, and work this out in the next three months. Then perhaps we can move forward together to a final solution.

Let’s be bold, innovative, challenging…a vanguard for change that improves care and outcomes for our Shropshire and Telford population.

It’s time to ditch vagueness, obfuscation, generalities, guesses, hit and miss forecasts. It’s time to ditch ridiculously optimistic public health improvement dreams.

Let’s get real and just get it done.

It’s the hardest thing in the world

New York City, New York State, USA --- Two bolts of lightning hit the antenna on top of One World Trade Center in Lower Manhattan as an electrical storm moves over New York, May 23, 2014. --- Image by © Gary Hershorn/Corbis

 

It comes out of nowhere.

Bang.

A jolt of lightning strikes your brain.

You’re suddenly taken where you don’t want to go.

A place you’ve been avoiding, blanking, hiding, camouflaging.

It’s emotional chaos for that little flash of the future.

So, that’s what is going to happen after all.

Dementia is a slow burn. Not for everyone I know, but mostly it takes years, even decades, to develop, or rather for

Your brain to stop working.

You live on, after diagnosis, mostly forgetting about it. You get on with your life.

Yes, you find it hard to get words sometimes, or to remember where and why you’re going somewhere.

You can’t always decipher what you hear first time…irritating those you live with.

You might start to shuffle a little, become unsteady on your feet, find steps a little tricky.

But it becomes the new norm.

Then out of nowhere…

We were talking about outbuildings, the future, renovations, flower arranging, live-in accommodation…

We mention a live-in carer in the future…

And suddenly I’m reminded that I will grind inevitably and inexorably to a confused, incoherent, shaky man who is alive but unable to live.

That’s a bit shitty really, and I’d rather not look over there.

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The other side of the river. Across the mountain range. A deserted, foggy, chilling land of no hope.

So I return to my garden, to my greenhouse, to making my bread and walking my new companion dog.

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I don’t know how fast I’ll decline, though I’m beginning to feel it more often.

I’ve planned for the future. We’ve done the financial and legal stuff.

But how do you do the emotional stuff, the head stuff.

I think you just have to get on and live and forget what comes next.

It’s the hardest thing in the world, leaving it.

You’ve got no clothes on!

What’s new around here?

Well, we’ve got a Vizsla puppy, which has caused anarchy in the Rook household.

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I’ve been watching birds arrive back from abroad for our summer.

Seeds sown in the greenhouse in March have grown into plants.

Oak trees are coming into leaf before ash…so we’re in for a splash.

One of my young apple trees has canker and will have to come out. (Not my body for a change)

I’ve been to RJAH board where I watched the new CEO, Mark, infuse members with new enthusiasm for patients instead of bottom lines, for questioning and challenging instead of quietly complying.

I’ve spoken at length with the newish deputy director of nursing at SATH about my awful four days in March. She got it (in the end). Why was I the only one to complain? Because I know what good and safe look like? Because I’ve done this for seven years. Because most patients just want to get out ASAP. And forget, move on.

As do I. But I can’t. Because I’m still inexpressibly angry.

And I have yet to see or hear anything that makes me think the SATH Board actually, truly, deep down understands my experience and their mistakes.

I have been visited by the director of nursing. I have had comments in a letter from the CEO. But no one has shown me the passion to get patient care right, the sense of outrage my experience should engender, the “That will not happen again here” attitude.

SATH has lost sight of itself. It’s been under terrible pressure for years but has taken to blaming everyone but itself.

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They look out from their barricades and shout…not for help, but for others to change.

They play at patient engagement but ignore much that we say.

They look for lean solutions, pilot them, then don’t implement across the Trust.

They think they’ve been dealt a bad hand, but don’t change the game they’re playing.

They believe shiny buildings will solve their problems, and can’t see simple solutions.

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They can’t hit the target, let alone the point.

So what can we do?

Well I think that telling them this in public can be beneficial.

It’s not negative to complain or criticise, it’s assertive.

It’s not unsupportive of your local hospital to say: open your eyes, pull your finger out, sort out your problems.

Because that hospital belongs to us in Shropshire. It’s where we go to be treated, to be recovered, kept alive.

And we pay for it.

No…

I think that the emperor should be told.

You’ve got no clothes on.

Look in a mirror.

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Go on. Get dressed in something sensible.

Stop trying to be posh when just ordinarily good will do very nicely.

You don’t need shiny new buildings.

The answer lies within.

Open your eyes and see it.