Implosion

Why do I write blogs about dementia?

Why do I want or choose to tell people what it’s like? The ups and downs.

Is it just navel gazing?

And, for that matter, is what I write about just about dementia, or is it all the rest of my long term disease conditions?

There are two guys I frequently meet when walking Lupin. S thinks he may have dementia since we have been talking about it recently. One GP (you know, that one) told him of course not because he passed the simple test. But he knows better…something is wrong. So I told him to try a different GP.

B, on the other hand, doesn’t see my dementia therefore thinks I cannot have it. I can talk, after all, lucidly, about dementia! And Brexit. He also blames immigrants and muslims for everything! That’s a bit trying so I try to avoid him.

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Now, the point is…

I write about living with my disease because I want to help others understand what it’s like. 

When people I meet say ‘oh yes, that happens to me too’ I think I may have helped them forward. 

When someone says ‘you can’t have dementia if you can have a conversation like this’, I think, well ‘you don’t look stupid either!’

So I write for everyone to improve their understanding.

….

I have just been away for a few days to attend a wedding. We booked a house for us and our grown up children.

It was down in lovely Monmouthshire, near Abergavenny, where I spent many school holidays walking up hills, having camp fires, slashing at bracken and climbing trees. I loved that area, and still do.

Hence, I was really looking forward to a week there.

We arrive and the house is fine, on the side of a hill of old oaks and chestnuts.

The others arrive. And all is fun and welcoming.

Then I find I have to go outside on my own for a while, in the evening. I cannot sit inside and listen to their talking. I feel I cannot get into the conversation even. I feel I am being excluded because I cannot keep up.

So I get a bit annoyed and withdraw. 

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Next day I begin to feel a bit confused in the new house. Not sure where things are. Up a stair, down a stair, round a corner, squeeze past a chair…frightful noise of chairs scarping on the tiled kitchen floor. Send me mad.

And when I show that it makes me mad I get told not to be silly and annoying.

So I withdraw outside again. And fume. Because they DON’T UNDERSTAND.

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That evening I cook a meal. It’s my way of keeping out of the group conversations and doing what I enjoy, with a drink.

Well, where are the pans? The knives? The plates? How do you use the electric cooker? There isn’t enough prep space…etc, etc.

And I get annoyed. Because I cannot just get on and cook.

Then the roasting tin doesn’t fit the oven. Wonderful. 

And I burn my self twice using oven gloves (supplied) that are worn thin.

So I start swearing and cursing.

And throwing things around.

And drink.

And get steaming bloody angry and noisy.

So everyone else gets upset and annoyed with me. And they try to ignore me.

We eat, and they go in the other room. 

I sit and drink, listen to some music, read my ipad…feel bloody miserable…

And I storm off to bed, slamming the door.

Great day.

Next day is the wedding. And I’m not in the mood for it.

I feel really exhausted after not sleeping well. And bad dreams. And unfriendly looks from my family after the night before.

I really don’t want to go to this wedding. They know that. I know that. But I have got to, I am told. Just behave and put up with it, they say.

I try. I do try. But I’m feeling tired.

And there are 130 people and I only know 10. And have very little to say to more than five. And I’m trussed up in a suit and tie.

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We stand around afterwards. We exchange pleasantries. I stand on the edge and smile at people.

Then off to the party in a marquee. Lovely setting, truly.

But…more smiling and pleasantries, drowned by loud music. So I withdraw outside.

And sit and drink and watch the world go by. But I know I’m being unsociable, and probably rude to the guests and hosts. So I feel guilty.

And oh so tired.

Then the dreaded part. Sitting opposite people I vaguely know but with whom I have almost nothing in common. And one is a priest! (Moderate language!) And I can’t hear what anyone is saying.

Christ. This is a torture. I turn to another guest I know a little, and ask an introductory question that I know will lead him on for hours. And yes, it does. I nod and grunt and he whines on.

The world is full of people who know everything and cannot stop themselves telling you. And I’m too polite to say stuff off.

By 9.00 I am finished. My head is bursting. I almost fall over on the uneven, slightly dazzly matting. I have to escape. So I go for a walk through their garden. Peace at last.

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Luckily I am not the only one who wants to leave early so I’m away by 10.00.

Of course, then there’s the sitting outside with a drink, chat with son, and feeling angry that I have just been subjected to an ordeal I could not stand, and did not want.

Next day I am utterly exhausted. All my body has stopped. My blood pressure drops. I feel ill. And I am still angry. That I cannot go for a walk. That I wasted yesterday. That I cannot do what I used to do. That my body is broken.

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And for two more days I am utterly out of it. 

My mind is torn. I am imploded.

All I want is to sit in my real home and watch the clouds and the butterflies drift by. Sleep in my own bed. Know where everything is. 

Take life at my own speed and just recover.

So we come home early.

….

If you are still reading this let’s look at the lessons.

Remember, dementia results from brain disease. Physical, organic disease. It’s not a choice!

A person with dementia is not just the person you see when you meet them now and then.

A person with dementia can and does get freaked out very easily, sometimes quite unexpectedly.

A person with dementia can get very tired quite suddenly and can take days to recover.

Most people with brain disease have other diseases too, which make everything worse.

Changes of surroundings are difficult to adapt to.

Noise and distractions can incapacitate you.

Dementia can lead to reduced capacity to control and moderate language and actions.

Dementia can allow hidden personality traits to emerge that may not be pleasant.

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….

My philosophy, if I could only follow it…

Stop doing what you SHOULD do, what is EXPECTED of you.

Do what suits you, and what you enjoy doing.

Avoid what upsets you.

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Dear Mr Bevan,

Dear Mr Bevan,

Please forgive my formality, but this is not an entirely complimentary letter.

How do things look down here from up there?

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Are you pleased with what you started?

I know, we all owe you a huge debt of gratitude for establishing the National Health Service after the war. It’s a fine thing. Universal healthcare. Free.

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Fabulous.

There’s just one little problem. You made a catastrophic mistake when you allowed GPs to remain as independent contractors. Yet also within the NHS.

Independent but effectively employed. Self employed but paid directly by the NHS.

I know why you did it…they refused to play ball with you.

And guess what…they still refuse to play ball!

There is a thing about cake and eating at the moment, on an entirely different subject. Was it Mr Gove or Mr Johnson who said we could have both?

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Well GPs are the masters of this game. 

Mr Bevan, you cannot have known that a little known man called Lansley would compound your mistake.  But he did.

Mr Lansley came along eight years ago and decided it would be good to give GPs even more power. He put them in charge of deciding what health care we would get.

He decided that GPs in different parts of the country would look at their populations and make good evidence based decisions to provide the health care that they thought we needed.

Mr Lansley, you forgot one thing. You gave the fox the chickens. You gave the fox the keys to their own larder.

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Unfortunately, you and your successors and club members also decided to give your GPs too little money, so they were bound to fail before they started. But they still had the keys to that larder.

Back to you, Mr Bevan. 

What do you think now?

Did you see the meeting I was in last week when a GP CCG chair said that if GPs were not paid a fee to do something they did not need to and would put it to the bottom of their pile?

Did you hear the same GP say that GPs don’t have time to discuss care and living planning with their patients? Someone else has to do it.

And then did you wonder why that GP and his clubmates do not commission someone to do this care and living planning?

The thing is, Mr Bevan, we rely on our GPs for our healthcare. They, however, seem to play a game of rules, whereby if they don’t get a fee they don’t do it.

It doesn’t seem to matter that their Royal College club has given them the guidance on how to do this person centred care planning. And that it would save them time (avoided consultations) and their CCG money (avoided hospital admissions).

It would require healthcare navigators of some sort. And they cost money. And, oh dear, they don’t have any money. (Except their salaries and profit shares).

We all know that a business has to run as a business. If you lose money eventually you go out of business.

Equally, a business has customers who can buy goods and services elsewhere if they are not happy with you. In which case you either improve your customer service, or take a pay cut to keep the business going.

Ah…oops…pay cut? 

Customer choice?

GPs?

Nah.

So its not really a business at all?

GPs are paid to provide care for their patients. But they choose what they will provide. And when.

And they only provide what they are paid a fee to provide.

And customers cannot usually realistically move to a different GP.

Hmm. We seem to have a problem.

Not only do GPs have a monopoly over primary healthcare for us.

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They also have the bank account to pay for community and secondary healthcare. 

I grant that CCGs do not commission primary care, ie their own GP services. 

But they do decide many of the services we get. And when I hear one of them complaining of lack of time and lack of fees I get a little hot.

GPs could pay for a model of providing their service that reduced the need for face to face consultations by over half. They could get their lives back. It is proven. It’s good for GPs and good for patients.

We could get same day appointments easily.

It’s called “Ask my GP”. And it’s here:

https://askmygp.uk/patients/

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But it costs some money!

Perhaps we patients should crowd source the cost!

Because sure as hell most GPs round here will not invest in it.

So, Mr Bevan, perhaps you would be good enough to return for a year or two and sort this out. 

Bless!

What do we want? We want ACTION!

.This week I and fellow DEEP members in Shrewsbury and Market Drayton are sitting down with several Board members from Shropshire CCG. We are going to tell them our stories.

I have waited two and a half months for this day, since I wrote letters to MPs and CCG and Council members during Dementia Action Week. 

Mind you, the CCG has still not replied to the points in my letter to local MPs which the MPs asked them to do. And they have been reminded.

A little bit of me expects the meeting to be cancelled at the last minute, or for only one CCG person to attend. But…we will see.

What will we say?

That’s up to individuals. But knowing them as I do they will not hold back.

My belief is that there should be consistent services and support across the whole UK. It should not be for CCGs and councils to pick and choose, to decided they cannot afford this or that, or that something highly valued elsewhere would not be wanted in their own patch.

And the government has very helpfully provided us all with a model that they believe “should” be provided.

It’s here. 

https://www.gov.uk/government/publications/after-a-diagnosis-of-dementia-what-to-expect-from-health-and-care-services/after-diagnosis-of-dementia-what-to-expect-from-health-and-care-services

Here are some screenshots.

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And here is the third of the Rights based statements published last year.

“We have the right to an early and accurate diagnosis, and to receive evidence based, appropriate, compassionate and properly funded care and treatment, from trained people who understand us and how dementia affects us. This must meet our needs, wherever we live.”

https://www.alzheimers.org.uk/about-us/policy-and-influencing/what-we-think/dementia-statements-and-rights

So…why can’t we force CCGs and equivalent bodies to provide this model? 

Jeremy Stevens told me three years ago that the NHS did not have the legal power to force a CCG to do anything. And of course that is largely down to Mr Andrew Lansley in 2011, setting up CCGs as independent bodies, responsible for buying the health care their population needed and wanted.

And if it’s evidence based you would not think there could be much reason to provide significantly different healthcare for people living with dementia in one county or another. 

Dementia is dementia.

The mode of delivery will vary across geography and levels of urbanisation, but dementia will not. 

If it is evidence based and proven to be effective and needed, it should be provided.

How, then, do we move forward? 

How do we force the CCGs in the current model to adopt the same model everywhere?

Probably by changing the law.

If NHS is hiding behind the law, change it.

If the law is preventing NHSE from imposing evidence based health care, change the law.

After all, if a CCG chose not to provide evidence based care for cancer or COPD patients, or heart disease, there would be uproar, and the NHSI body would be on them in a flash.

But this is dementia. 

And organic physical disease of the brain.

Its not a mental health condition, though I am not implying that it is more or less important than mental health.

Dementia is just, well, unseen. It is incurable. We don’t want to talk about it. We’re frightened of it.

So it can be ignored. And people living with dementia can just hideaway and dissolve into meaninglessness.

And the costs of earlier than necessary care and unnecessary and long hospital admissions continue to mount. 

Which could be avoided several times over. By investing in a standard, evidence based model.

We need to put pressure on members of parliament to get the law changed. If they get deluged by letters from constituents who demand replies and continue to write and lobby, they will get the message.

Bless them, MPs probably have no idea what health care is provided for PLWDs, so we need to tell them.

So that is what the 3 Nations Dementia Working Group will be doing in the Autumn. And we will be asking for your help. 

We need hundred of thousands of you to bombard your MPs. 

We have to tell our stories time and again, both as people living with dementia and as care providers.

So watch out in the Autumn. We will make noise and we will get change.

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In the meantime join the 3 Nations Dementia Working Group. We haven’t yet got our own website, but this link will take you to our place on the Alzheimer’s Society website.

https://www.alzheimers.org.uk/get-involved/engagement-participation/three-nations-dementia-working-group