Do people still talk to you?

Do people talk to you?

At a Dementia Friendly Whitchurch meeting yesterday the daughter of a lady living with dementia said people stopped talking to her, and stayed away, after her diagnosis.

She said it was such a shame because her mother suddenly lost her friends. She had no one to talk to.

She had no one to chat and laugh with. 

No one to remind her who she is. No one to make her use her mind, find words, retain and relive memories.

They thought it was down to fear. 

Fear of dementia. 

79aeaf16-647f-4fdb-b8b9-866dab6f8cea

Some said they might catch dementia from her! (Yes, really. Dementia as an infectious disease.)

Some simply assumed she could no longer communicate.

Some were frightened of saying the wrong thing.

So they stayed away.

How does this affect a person living with dementia?

Well, I will tell you how it makes me feel.

It is pretty fair to say that hardly anyone I meet or know asks me about my dementia. And how I am feeling about it.

Of course they ask if I’m “all right”?

But do they actually want to know, or is it just the usual pleasantry?

And if it is just casual and off the cuff I am not going to start explaining now the black dog has got me again.

The only times I get to talk about what it’s like and how I feel are at the DEEP peer groups. 

Because there we all have it and we all get it.

I have (increasingly frequent) short periods of deep depression now and then, and I am beginning to work out when they happen. It seems to be after I have been with my family or other people for some sort of occasion. 

77b56cbe-a243-4f92-8ccc-c1b419a33383

I used to think it was fatigue. Or that discombobulation that we who live with dementia get. Fog.

And indeed these may be in play. 

But I now think some of the cause is feeling that no one actually cares about how I feel. If no one sits down with me to talk about my disease and my feelings about my life, or if they make it clear that they don’t really want to “go there”, I think I really am on my own.

It is about identity. Validation. And feeling connected and valued.

I have a terminal disease. I know it is getting worse. And these deep black dogs are probably part of that progression.

I live in a small community…well, on the edge of it really. I have been here for 36 years. I know most people, though not necessarily as friends. And I don’t go round the village shouting out about my dementia. But in this little place I would be surprised if most people were not aware of it.

So when I meet people when walking with Lupin, or chatting in the village, or when people come to the house, or I go out, I have to switch off that dementia disease and act like just normal. Like I am happy all the time. 

Because I am seen as a cheerful chap! They don’t see my black dogs sitting around, waiting. They don’t know how much I think about dementia and its effects. How every little trip or wobble or forgotten task or face makes me question how the disease is progressing.

I have just had my annual driving licence re-application documents. They are a real pain to complete, because when you have several diseases you have to trawl back to dates of consultations with doctors, tests, etc..

And I know that sometime before long I will have to stop driving. I am pretty certain I am quite safe still now. But who knows when vascular disease will take a little step downwards?

That is going to be a difficult time. 

Perhaps I will get an electric bicycle, like my sight impaired neighbour.

Returning to yesterday’s meeting: one person said she had been to a carer training session recently. And the key message was:

“It’s not what you say that matters; it’s how you make the other person feel.”

Learn that by heart. Tell everyone you meet. 

Don’t be afraid of saying the wrong thing. Just be there, offer comfort, and listen.

And above all…talk to us about what matters to us. 

We are on a journey to death. It’s a fact. 

(So are you, but we have advance warning, and also increasingly nasty symptoms in our last years.)

We need to talk, to let out how we feel, what we fear, and what we enjoy. 

There is no reason for you to be afraid of us or catching our disease.

Take time to talk and listen. It’s good for both of us.

“It’s not what you say that matters; it’s how you make the other person feel.”

Visions that hide reality

The Dementia 2020 Vision includes this aspiration…

For England to be “the best country in the world for dementia care and support for individuals with dementia, their carers and families to live”

We are today surrounded by aspirational, visionary statements issued proudly by organisations that want to be noticed. 

My local NHS acute Trust has for two years set out that…“Our Vision is to provide the safest and kindest care in the NHS.”

Is this likely? Is it achievable?

In December their A&E waiting time measure crashed to 58% seen, and treatment started, within 4 hours. There is a major investigation of maternity services following excess maternal and infant deaths and birth injuries over ten years. Staff are leaving in droves.

CQC reported that the Trust was “inadequate” for safe and well-led. That’s the lowest rating.

Safest and kindest? Least safe and least kind?

How will you ever judge whether a system or hospital is safest or kindest or the best country in the world to live with dementia?

Arguably safest is measurable; the others are not. 

And why set yourself up for ridicule by saying your vision is to be safest and kindest or best when in fact your leadership and management are so inept that your measures plunge?

A business would be wound up, bankrupt. The NHS carries on. The same failed leaders carry on, their vision in tatters.

The emperor truly has no clothes.

2dcc3e02-be14-423e-8a66-634bf58aebc7

So, England to be the best place in the world to live with dementia? By 2020?

I am hoping to attend (perhaps even chair, like last year) this year’s conference on Dementia 2020. 

Last year a civil servant trotted out some wonderful assertions based on hopelessly optimistic interpretation of select evidence. You know the sort of thing.

Actually, we’re doing rather well. The diagnosis rate is at the target of 67% nationally. Lots more people are taking part in research. The Government has led the development of the largest ever funding for research.

Wonderful.

But the audience were muttering. It really doesn’t feel like that on the ground, in Sheppey or Sheffield or Shrewsbury.

And I challenged him on the spot.

A year later…

Things are not improving in many places. 

There are still too many GPs turning patients away, telling them it’s just ageing, or stress, and what’s the point of a diagnosis! 

There still is inadequate post diagnosis support.

There are still too few areas with Admiral Nurse services.

There are still too many areas without dementia navigators.

Care home and agency staff are still rarely trained sufficiently so they can provide good, appropriate care.

Hospital staff still have very little training beyond Dementia Friends, which is not even level one on the Dementia Skills model. (All health or care staff who have regular contact with people with dementia are supposed to have level two training.)

There is still too little meaningful support for unpaid carers. And what there is is often almost impossible to find, working through the maze that seems often deliberate.

f701575b-4f9f-4f68-a647-651c7d89fbd2

So, England is nowhere near becoming a good place to live with dementia.

It is far from the worst, of course. And you can be best at something if everyone else is worse.

We know that many more developed and well off countries around the world do worse than us. We know that in some countries, Italy for example, there is very little infrastructure around dementia care, often for cultural reasons.

We also know that in many countries much more is spent per head on health care, and their systems are much more innovative or extensive or well developed than ours.

We have a system in which NHSE and the Government can set out a minimum expectation of diagnostic and post diagnostic support, and the local commissioners can ignore it.

We have a system that measures success in care in terms of coding on GP QOF records.

We have a system in which a hospital can get away with claiming two thirds of its staff are dementia trained, when the training is just a few minutes briefing during induction.

We have a system which has committed all its funding in total ignorance of dementia, in a society which fears dementia above every other disease, and which seems unable to tear itself away from ‘what we’ve always done’.

795c5365-6baf-42b6-9181-c8ce73148425

So, HM Government and Matt Hancock, when you send a civil servant to this year’s Dementia 2020 conference, please make sure s/he has the humility and honesty to say it as it is for us. Every day.

Better still, ask us, living with dementia and providing unpaid care, to tell you, government and local commissioners, what we need you to do.

Why are you all so afraid? We won’t ask for the earth. And what you spend will save a lot more down the line.

Above all, we need to change the way we do dementia in this country.

dcc228ec-6394-4b35-a759-88172ce28282

2019

2019

“This is your year to own it, Cancer. If you feel like you haven’t been in control of your own destiny, it’s time to take back your power and show the world what you’re capable of!”

Thus spake Zarastrologer.

Take back my power. Hmm.

What is going to happen this year?

I’ll be 68. My daughter will get married. 

I will grow kale and leeks and runner beans; tomatoes, cucumbers, chillies; roses, alliums and hydrangeas.

35e306a9-acb9-415e-ad26-9bb896c6b9d3

And take Lupin on long, lazy walks. And cut grass in the sun.

Control of my own destiny?

Well of course. We have choices. We make them. We live with them. Nothing new there.

What am I capable of?

(Perhaps) God (perhaps) knows.

Perhaps my ever rising cholesterol will kill me. I might stroke out, and away. (Hope it’s big and one-off.) Hal ready to unwind? A chip here, a gigabyte there.

Two weeks doing nothing as the year ends and starts again is good and bad. Good that I stop thinking about what is wrong with the world. Bad that I relax into comfortable laziness and lose the desire to get up and go out again.

It’s getting harder to bounce back. Or to start another lap. Knowing that it is almost a certainty that the oval circuit will bring me back again to this exact spot next time round.

But just like Coleridge wrote in his poems, you go down and you come back up. There is an archetypal pattern to life, a rhythm which flows on and on, up and down, and up and down, and up and down…

The sea rises and falls. The sun comes and goes. Flowers bloom and wither and leave seed for the next year. And the seed rises up again.

And so, 2019.

24df57ac-c716-443a-9bb7-1a01eb8e2831

The Ten Year Plan for the NHS, or rather for our health care. Dementia is mentioned 19 times in the body of the report. 

Section 1.20 (page 17) says “We will provide better support for people with dementia through a more active focus on supporting people in the community through our enhanced community interdisciplinary teams and the application if the NHS Comprehensive Model of Personal Care”.

There is also a reference to these teams including a dementia worker.

The other mentions are pretty much side swipes with no particular substance, for example about prevention.

I hope “supporting people in the community” means post diagnostic support of the social care model type, to help us live as well as we can/choose. I hope it does not just mean crisis teams, case finding to prevent hospital admissions. 

Here is this NHS comprehensive model of personalised care. This is what the Plan promises.

d42c0b59-8694-482f-9551-9dc54acd7597

Look carefully. It is all there. All we ask for. 

It seems to have been around for a year or more.

Perhaps I was hasty last week when I tweeted that there was very little about dementia in the plan. What I should have said is that there are very few words. But this model of personalised care is huge. And fantastic.

The key elements of the model are:

There is a graphic video here, on Youtube.

https://www.youtube.com/watch?v=RXOd-7rn6so

The model is being piloted around the country at the moment.

So, in theory, we people living with dementia will at some time before 2029 receive support that is personalised to our needs and to what matters to us. 

In theory, I say…because we have yet to see how the resource for all this will get down to us.

How will Mr Hancock and his successors ensure that the model is consistent across the country? That it avoids falling into the post code lottery of doom?

The biggest factor for me is those who lead its implementation. 

We currently have CCGs commissioning our health care, led by decision makers who cannot make decisions and don’t know how to lead. They’re GPs for God’s sake. Get back in your consulting rooms where we need you.

But these are all going to be subsumed into mega STPs, or Integrated Commissioning Systems.

Regional health and care authorities.

(Remember that archetypal rhythm that goes up and down, round and round…?)

Perhaps these new bodies, lead by professional leaders, will be able to force this stuff into reality. 

……

That looks pretty long term from where Lupin and I are sitting.

Unless you are in a pilot or accelerator site you won’t see much of this for a while. And those of us with terminal diseases may not have that long to wait.

(I suppose everyone has a terminal condition…it’s called life.)

So for me 2019 has to be about making real differences locally IN SPITE OF the blockers and barriers across the road. 

A network of peer DEEP groups across Shropshire for people living with dementia. (A project funded by Innovations in Dementia.)

More Dementia Friendly Community steering groups across Shropshire. (We already have six.)

Persuading every GP practice in Shropshire to sign up to work to become dementia friendly.

Developing a buddy system for supporting people newly diagnosed.

Putting pressure on the local hospitals to improve care of patients with dementia.

(Is it time to reject their DAA membership for inaction?)

These will make a real difference, here.

Persuading my CCG to appoint a substantive lead for dementia? (So at least they have someone monitoring care and contracts…perhaps even implementing the dementia strategy, or an Admiral Nurse Service.)

……

The rhythm will continue to ebb and flow, round and round, up and down…

But as a friend of mine write to me yesterday:

Some things in life are bad,

They can really make you mad,

Other things just make you swear and curse,

When you’re chewing life’s gristle,

Don’t grumble,

Give a whistle

And this’ll help things turn out for the best.

And…

Always look on the bright side of life.

[whistle]

Always look on the light side of life.

[whistle]

913e3e80-dd4d-43aa-a6f1-e60889d04caf