Rights based care?

When will brain disease get parity with cancer?

I’ve written before about Dementia not being a mental illness, and arguing therefore that dementia should not come under mental health providers.

The memory service. Aargh. I hate the name.

Equality and Diversity law requires that people receive equity of access to healthcare and support regardless of ethnicity, gender, disability, sexual alignment, etc, ie the nine protected characteristics.

Neither should equity of access to healthcare and support depend on where you live.

There will be differences in delivery models, based on geographical location, community assets, and funding, not to mention other resources like staff and transport.

But given that there is a national funding formula (not perfect but consistent) for health and for social care, why do we not have consistent models of care and support?

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Why do we have some areas with admiral nurses, and others without?

Why do some areas have six week waits for assessment by the memory service, and others sixteen weeks (and more)?

Why do some CCGs spend five times more than others on services for people living with dementia?

Why do CCGs and providers not carry out full Equality Impact Assessments on their commissioning and services and find that actually people living with dementia and their family carers are often implicitly discriminated against?

Why, when the number of people living with Dementia is rising dramatically, when well over 25% of patients in hospitals live with dementia and have stays of 21+days compared with 4-7 days for others, why are so few people in CCGs doing anything positive and realistic to provide better care and support?

It’s an epidemic.

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It’s costing the country around £23bn a year.

Care homes are going out of business so less places are available for those who need specialist care. Or just somewhere they can be looked after.

During this NHS crisis (summer and winter…it’s continuous) specialist staff in Dementia teams are being taken away from their work to provide cover in ED and on wards, or corridors.

Guess what? Patients living with dementia, get less good care, have worse experiences and worse outcomes, and more of them end up in care homes when they could have returned to their own homes.

Are staff being taken away from cancer teams?

Are patients being denied chemotherapy because staff have to go to ED?

No, and rightly so.

Dementia is everyone’s job! In and out of hospital.

But we seem unable to see this and respond to individual patients’ needs. We treat their immediate disease, their cancer, their prostate, their hernia…but we lose sight of the other bits that make them who they are, including their brains!

And we seem unable to grasp the essential irony, that if you don’t look after the person with dementia as they need to be looked after, they will “go wrong”, and block your beds! And cost you a lot of money which you could have avoided spending.

In these days of STPs, with footprints that are bigger than CCGs, and which will probably take over from the CCGs soon, and become great big accountable care organisations (ACOs), what will happen when one half of an STP provides admiral nurses, while the other half doesn’t?

That will be straight out of the Equality and Diversity playbook!

Politicians and NHS national leaders talk about national strategies, locally delivered. National models tailored to local needs.

The current NHS architecture was set up in 2010 because apparently GPs knew the local needs best and would commission services in accordance for their populations.

So why does one set of GP commissioners (CCG) in Telford (for example) identify a need for admiral nurses, and dementia support workers and dementia companions for all its area and pay for them, while an older, larger population next door apparently does not have that need so the CCG does not commission them (in Shropshire)?

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In actual fact Shropshire includes around three times the number of people living with dementia than live inTelford. Where does that leave local GP knowledge of local need?

Oh and Shropshire CCG has just not replaced its commissioner for dementia services. That’s a great demonstration of commitment. Not.

The law says people living with disability (including long term conditions such as dementia) must not suffer discrimination as a result of their disability. We must not be adversely and disproportionately affected by commissioning decisions over our health care, compared to other people without the disability. Or compared to people with the same disability living elsewhere, I would suggest.

I wonder whether this can be legally challenged? Why should one CCG (and I’m sure there are many others) choose – and it is a deliberate choice – to ignore a large group of several thousand people living with a brain disease?

Not only ignore, but actually decide that their lives and their “suffering” are unimportant and they do not deserve support and care.

If they chose to ignore people living with breast cancer, or brain cancer, and to withhold care and support, what do you think would happen?

If it’s rationing because CCG staff cannot reorganise/reprioritise funding and spending choices as health needs change, say so. But it’s still illegal.

It’s discrimination.

It’s not fair. Not right. Not legal. Not humanitarian.

When will we challenge this?

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….

These are the five Dementia Rights Statements.

We have the right to be recognised as who we are, to make choices about our lives including taking risks, and to contribute to society.  Our diagnosis should not define us, nor should we be ashamed of it.
We have the right to continue with day to day and family life, without discrimination or unfair cost, to be accepted and included in our communities and not live in isolation or loneliness.
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.
We have the right to be respected, and recognised as partners in care, provided with education, support, services, and training which enables us to plan and make decisions about the future.
We have the right to know about and decide if we want to be involved in research that looks at cause, cure and care for dementia and be supported to take part.

I might not smile

This is for Christmas and for everyone living with dementia

I’ve got the Kings College festival of lessons and carols on in the background.

I’ve wrapped a few presents, decanted the chilli and garlic oil into tiny old fashioned bottles with those porcelain tops that flip down on stiff wire. Like lemonade bottles used to be.

There’s tonnes of food in the house for the next week. And drink.

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And yet…

That familiar phrase…

And yet, I sit here with tears welling, just wondering, thinking…

Christmas at home when I was a child. Drinks next door. Go to bed excited. Turn the light off. Try to stay awake for the door handle rattle…

And then at five o clock jump out of bed and see the door handle pointing up from the weight on the other side. Quietly, ever so quietly, open the door and lift off the stocking, thick knitted, with an elastic garter sewn on to hold it to the door handle.

Elastic garters…long socks and shorts at school. It wasn’t pink and rosy and great…it was just school in the early sixties.

My tears are not for the past. It was not wonderful. I remember the November smog in Birmingham when I could not see more than two feet. Walking home from school four miles. Bumping into trees. School was a trial that lasted twelve years, twelve unpleasant years that moulded me and my values.

And I still get fund raising and commemoration and old boys’ dinners letters through the post. I hated it. Yet they still try to include me in their sham, prejudiced, entitlement world.

This Christmas seems more than ever before like the leaving of something. Here I am, dwelling on a past which really was not good. And yet, I will never recapture the Christmas anticipation and joy of childhood.

I am not alone. Nor are you. But we may be lonely. We may not want company, but we may miss it. We may have little past family left, or none at all. We may, like me, have siblings who don’t communicate, and might be happy, sad or dying. I really don’t know.

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But Christmas is a kaleidoscope. All those memories and feelings are squeezed together prismatically, misshapen, colourful but unrecognisable, and just…there. Like a geezer, bubbling away in sulphurous mud, belching, farting out uncontrollable feelings and memories.

It is just too much to control. The lid comes off once a year. Blows up in the air, clatters to the ground, and leaves us staring wide-eyed into our memories and our feelings.

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And it hurts.

It just hurts.

And that’s why tears come.

Don’t look, don’t feel, don’t wonder…just talk, eat, drink and be…merry?

Kill the time with booze, telly, games, presents, wrapping paper, food and more food…

That’s what we do.

But actually, Christmas on your own is eye opening, soul opening. Strip away the games and pretences, the hide and seek, the strategies to avoid thinking, and what do you have left…a void. A crevasse.

At the bottom of which are your memories of times past.

And if you have a terminal illness that will either kill you or limit your life, and gradually rot your brain or other organs, it is probably a good thing to have this time to reflect, and weep, and grieve for what you are losing.

It’s a difficult time. Because we have little hope. We know our time is limited. We know the next year will be a little more distant, isolated, removed.

So, please, don’t try to make us all happy and cheerful because, after all, it’s Christmas everyone!

Let us reflect and think and just, well, be quiet.

Happy Christmas and new year. But I might not smile.

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What matters to me?

What matters to me?

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I asked members of a DEEP group recently if they could answer this question? Or if anyone in Health care had ever asked them.

Responses were predictable. No, no one ever asked them what mattered to them?

Me neither. Never.

But nor did they understand why it would matter when they’re talking to a Dementia Nurse or their GP. It was as if they were embarrassed to talk about those tiny little things in their lives. Why would they take up a professional’s time with these little details. They’re just personal to me.

Yes and no.

We may not think any of this matters at the moment. We get pills, we get pep talks, we are told to avoid risks. What’s a care plan got to do with me, I just live. And get on with it.

But wait a moment.

How many people have been given drugs which make them feel awful? I certainly have…blood pressure meds that debilitate me for hours, and dear old donepezil, which makes me feel so bad I have to lie down all day…if I take it in the morning.

Did anyone offer me a choice about these? Well yes, to a point, but not with any discussion of how they might debilitate me. And how to get round that.

I prefer to have higher blood pressure in the day so I can carry on living as I wish, but it’s taken quite a long time to get to this. Because I and medical staff did not give any real weight or thought to what matters to me.

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Care plans, if they exist, are just bits of a screen (print) that include our diseases, medications, and medical history. In other words, it’s our doctor’s or our nurse’s record for their use. Very useful if I’m admitted as an emergency, but useless for helping me to live as I choose.

Apparently NHS data show that 85% of Patients with long term conditions have care plans.

That’s bollocks, pure and simple. They are not care plans. Just lists.

So let’s start again.

Do we have shared care plans which we have co-designed with the medical and social care staff we work with?

Nah.

What should a care plan be?

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A plan for how I want to live (and die), now and in the future.

Who is it for?

Those who look after me when I am no longer able to. And those who look after me now, when I want my life to continue as I choose.

Every health or social care worker who provides support or treatment should read it and be able to contribute to it.

And I should own it and carry it with me, or give access to it if it’s stored somewhere, virtually or on paper.

This stuff is not new. But it’s not understood and applied in practice.

Have a look at this short cartoon, one of several put up on Youtube by Helen Sanderson, about what matters to you.

And here goes with a list of some of the things that I’d put in my plan. Just the ones I can share in public, of course. I do this to make people think about the small things that matter to me, that professionals cannot know unless they ask and take time to find out.

They make the difference between living as I choose or just existing; being positive even when feeling ill, or feeling hopeless and helpless. Going to bed thinking it’s been a worthwhile day. And getting up with an inner smile.

……..

I like a pint size mug of leaf tea, without milk or sugar. Never tea bags.

I like a shower before going to bed because my feet feel less painful and I sleep better.

I like walking alone with the dog in woods or fields, just being present, with my camera, listening and looking.

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I like to sit for an hour with tea and the dog reading the Guardian on line after I’ve got up, before starting the day, with a window to look out of.

I like to cook, and I like strong tastes and spicy food.

I like to sit in the garden with a mug of tea, or beer in the evening, just listening and watching, browsing twitter and email, writing.

I like to wear crocs, sandals or, better still, no shoes.

I like espresso coffee made with an aero press.

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I like to make and eat proper, artisan pizza, not shop bought stuff.

I like to walk and garden, and can’t if I take blood pressure pills in the morning.

I like using my brain, thinking, analysing, challenging, and the stimulation of working with (most) nhs staff.

I don’t like overwhelming noise, bright lights, people I don’t know but have to talk to.

I don’t like interruptions or instructions when I’m cooking.

I like two pillows, and untucked sheets over my feet.

I like cutting the grass.

I like spending time with my children and their partners.

I like sowing seeds and growing veg and flowers and trees.

I don’t like having to talk to people when I’m out with the dog.

I don’t like the table being cleared before I finish eating. (I eat slowly.)

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I like lots of windows, and the curtains left open at night.

I like being greeted with a smile and a name when I meet Health staff who look after me.

I don’t like being called “luv” or “darling” or “petal” or “mate”. My name is George.

I like to have time to ask questions, to think things through, and to find to a conclusion, before leaving appointments.

I like to tinker in the piano from time to time.

I like to write… letters and blogs, and tweets and things.

I like to choose my company, and to talk about things I’m interested in and know about, not always what someone else says.

I don’t like listening to people with closed minds and uninformed prejudices.

I like eating kidneys and liver. And smoked bacon of course.

I like fresh brown bread, especially if I’ve made it.

……..

I could go on. But you get my drift?

These are what matter to me.

I leave medical care to medics, but I want to make the choices from their advice so I can go on living as I choose.

So always, always ask…

What matters to you?

What matters to me?

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Drawing back the veil over My Hyde

Drawing back the veil over My Hyde.

I wrote this yesterday and have been wondering whether to publish it. It sounds as if I am terribly depressed, but that’s not it. It is a tale of two halves, growing further apart. And of bereavement…

……

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I’ve got brain disease, I’m told.

My symptoms are described together as a dementia. Well, mixed dementia actually, labelled Alzheimers and Vascular.

You meet me at a conference or a small meeting and you probably think “really?”.

Like many others, I can focus my brain on the matters in hand, as long as I have prepared. And as long as I am not tired.

So I’m a cheerful chap to most people, talking cheerfully about living with dementia, smiling away, saying hello to everyone around.

And I do really enjoy doing that. I get immeasurable satisfaction and pleasure from giving talks, chairing meetings, and just being around positive people who also want to make a difference.

But you don’t see me at home.

I’m reminded of the Chris and Jane Roberts Panorama film. You meet Chris, when he’s at an event, or over supper afterwards (curiously often in Weatherspoons), and he’s also cheerful, and talkative. But at home we all saw how he is different.

When I go home I’m also different. And in the last couple of months I have become aware that my symptoms have become more socially isolating.

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I can’t do noise, and my lovely Lupin’s barking really crashes my head at times. It is overwhelming. Add another dog or two when friends come, thrashing playfully around, under my feet when I’m cooking, and I just can’t stand it. So I shout. And use foul language.

Well I’ve always had a colourful vocabulary, but I’m far less able to control it in social situations now. It’s like before I started Donepezil, three years ago. That made a huge difference, and I took back control of my self control. Now though it seems to be going again.

In a meeting when someone is speaking off the subject, or telling me things I already know, or just being really boring, I get intensely irritated and impatient. I start slapping my hand on the table. I want to shout at them. I haven’t got time to listen to you if you can’t do a decent presentation, or have nothing interesting to say.

And so, at home, I find suggestions about how I might do something, like cooking, or hoovering, or some other mundane thing, intensely annoying. I feel, often wrongly, that I’m being criticised, and not being allowed to be who I am, and make my own decisions. And I shout sometimes, and I upset others around me.

I know some good friends who came to stay a couple of months ago found me difficult to relax with, and it’s taken me all this time to really understand why.

Why, indeed, would people want to come and spend time with a miserable, angry, foul-mouthed person? Even friends have their limits!

I am seriously impatient at home. If, for example, I can’t get my walking boots laced up at the first attempt, I just lose my temper. I shout. I’m furious.

I have simply lost whatever it is in my brain that is the dam holding back that fury, and it explodes out.

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So here comes Christmas. Lah de dah.

Four days with family…and I do love them all and love to see them. I’ll want to cook, because I enjoy doing that. But only if no one interferes at all. And by the time I get to the table I’ll be tired and fractious, especially if guests aren’t all sitting ready as I serve. And I’ll sour the general spirits.

Perhaps I should simply go into another room and preserve my energy and state of mind. Keep out of the way.

I’m not the person I once was, and it’s hard to accept.

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I am writing all this not out of a sense of self-pity, but because I am certain that there are lots more people who have the same sort of experiences and difficulties. And most people don’t know. I live by the rule that if I experience or feel something, it’s pretty certain that other people do too.

It’s not just Christmas, though this season does adversely impact many of us. It goes on and on. We get tired. We feel we have to go on smiling and ignoring our inner feelings of frustration and helplessness, as we watch others do what we used to do seamlessly.

The best social events now are short and small and quiet. I’m only now beginning to understand the need for that quiet room at good conferences, where you can just sit and be…quiet.

I don’t know about others, but I feel huge pressure to be cheerful and chatty when friends and family are around, even when I am not feeling like it. I’m afraid that if I’m miserable they won’t want to come back again. I’ll be just a person whom they’d prefer to avoid.

There is this conflict: is it my responsibility to take whatever actions or strategies I need to in order to be nice, cheerful George, or is it other people’s responsibility to change how they behave and what they do, to help me retain my self?

When I visit my GP I usually become cheerful George again. It’s as if I feel I have to cheer him up, and not load him up with my difficulties. How stupid is that?

In any case, a GP is not the right person for this type of conversation. An Admiral Nurse, yes. But, of course, we don’t have them here! A counsellor? Nah.

What about the memory service people? Their risk aversion is stifling.

I have a terrible distrust of most health professionals I meet. They may know their professional medical stuff, but they really don’t get dementia and its effects on people. So if I get invited to an annual health review, do I go? No. Because it’ll be a practice nurse who has no idea about dementia and who will simply say let’s do a blood test. Oh and you know about diet and alcohol so I don’t need to tell you that!

It has happened several times. So I don’t have any real faith left there.

I’ll go on with my thoughts and conversations with myself, and try to work through these things. It’s a lonely place at times, and it’s going to get worse.

And I’ll continue in January to give talks and go to meetings, and organise DEEP groups.

Because that’s what makes life worthwhile at the moment.

In the next three weeks I’ll have time to reflect and recharge. And maybe I’ll be able to draw the veil across on Mr Hyde once again.

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A Good Year?

Time to reflect.

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What have we achieved? In Shropshire and wider afield.

There are now just over 12,000 dementia friends in Shropshire, Telford and Wrekin.

Our DAA has some 60 member organisations.

There is a new DAA in Newport, and lots of signed up supporters.

Ludlow and Oswestry are about to launch DAAs, and Whitchurch will soon have one next year. All down to a few wonderful, committed, passionate people.

Telford and Wrekin CCG has committed to rolling out the Dementia Companion model that we all co-designed two years ago, so that when people are diagnosed they are contacted and supported as much as they choose throughout their journey with dementia. The model is now working in Newport.

Shropshire CCG will be piloting this role in Ludlow and Oswestry early in 2018 for a year.

Memory service (agh, how I hate that label!) staff are now arranging sessions in some GP
Practices to meet people with cognitive impairment and diagnose the more straightforward cases locally, in places that people know.

 

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There are four peer (DEEP) groups in the northern half of Shropshire for people living with dementia to meet informally and regularly.

Diagnosis rates are up to 70%.

And yet…and yet…

How many people living with dementia actually access any meaningful support?

I’d say no more than 300 in Shropshire.

DEEP peer groups, singing for the brain (being phased out?), Dementia cafes, art and craft groups, church groups…all good things. But reaching very few.

Alzheimers Society Support workers providing advice and signposting to those who enquire.

There are 3,000 people over 65 living with dementia in the county. Another 240 under 65, for whom the diagnosis rate is an appalling 25%.

So let’s estimate that 10% of people living with dementia in Shropshire get meaningful support to enable them to continue to live as they choose within their communities. And I’m probably being generous.

Yes, all of us with a diagnosis will receive a visit a couple of times a year from “memory service” staff. We’ll be told to minimise risks, and we’ll be given a care plan that we’ve had little input into, and which we have not agreed before it’s sent to us in the post.

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When families are in distress in Telford and Wrekin they will get great support from the Admiral Nurses there. But Shropshire doesn’t commission them.

The Dementia Companion role will provide invaluable support and advice and a bit of handholding to help people remain living their normal lives in their communities, engaged, doing things that they want to do.

A diagnosis does not and must not change how we live. The brain disease will, but not the diagnosis. And to counter the negative effects of the brain disease we do need the sort of moral and social support, as well as practical help, that peer groups and dementia companions provide.

We have some wonderful NHS staff working to improve the health care that people living with Dementia receive, in hospital and out.

But there is not yet an engrained cultural and professional acceptance that dealing with Dementia is everyone’s job. That you can’t just appoint a Dementia lead and a few (excellent) HCAs and tick the box that says you’ve dealt with dementia.

It’s everyone’s job!

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Training for health care staff is paltry. It may be included in induction for new staff, but it’s less than an hour. It’s skimpy coverage of the Butterfly Scheme and John’s Campaign carer passports. Because that’s all the managers will allow time for.

A few staff do more detailed training…hmm, 1%, perhaps 2%.

There are places of excellence, where – guess what – one or two staff are so passionate they take the rest with them, usually fighting against managers rather than alongside them.

And behind all this work is a small group of people, many living with dementia, who are becoming more and more involved in, and confident in, campaigning for better support services and better health and social care.

campaigning with a small c.

It’s not headline grabbing. It’s not shouting (usually).

It’s being present and talking and challenging.

It’s travelling…often without expenses…to meetings and groups to provide the voice of the people for whom services are provided…or ought to be.

Nothing about us without us present. Please.

It’s telling professionals about the reality of loving with dementia that they neither see nor feel, because they can’t. And because they don’t often ask.

It’s time that social and health care commissioners and providers fulfilled the legal, statutory and moral rights of people living with dementia…

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  • “We have the right to be recognised as who we are, to make choices about our lives including taking risks, and to contribute to society. Our diagnosis should not define us, nor should we be ashamed of it.
  • “We have the right to continue with day-to-day and family life, without discrimination or unfair cost, to be accepted and included in our communities and not live in isolation or loneliness.
  • “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.
  • “We have the right to be respected, and recognised as partners in care, provided with education, support, services, and training which enables us to plan and make decisions about the future.
  • “We have the right to know about and decide if we want to be involved in research that looks at cause, cure and care for dementia and be supported to take part.
    I want to say a huge thank you to everyone who has contributed so much to raising awareness and improving the care and support that people living with dementia get. You’re unsung heroes.

And everyone else? You commissioners and providers and managers and doctors and everyone. You shopkeepers and bus drivers, councillors and everyone. You can all do something to make life better.

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So, in 2018, what will you do?

It’s not just about memory!

This is a talk I gave yesterday at a conference entitled 3D Research: Dementia, delirium and Depression, in Stafford.

……..

I was diagnosed with mixed dementia three and a bit years ago, aged 63. I had asked my gp to refer me in both of the previous two years, but he had refused on the grounds that there was no point because there was no treatment or cure. The third time my wife and I insisted.

Having an early diagnosis of young onset dementia made sense of my recent life. Increasing confusion, occasional disorientation, tripping on steps, forgetting things, being unable to see things in front of me when searching for them.

Having a diagnosis also meant that my wife and I could plan for later years, by doing powers of attorney and separating our bank accounts.

And we bought an elderly camper van and toured France one summer. Something we had originally planned to do after my wife’s retirement in a few years.

Most people don’t imagine I have dementia when we meet for short periods. I can have good conversations if I control the subject. I just find it hard to answer questions or comments I’m not expecting. I have to tune in to a subject to find it in my brain. I guess I’m finding new neural pathways, which takes time and effort and sometimes they don’t work. It can be very tiring.

Getting a diagnosis has also brought me to meet lots of new friends. I’m not the only person living with dementia to see it as a sort of blessing in disguise. At least in the earlier stages. We’re a bit of a community. We understand each other. We support each other.

I have started two peer support groups in Shropshire, under the flag of DEEP, the Dementia Empowerment and Engagement Project. There are nearly 90 of these groups around the country. They are usually small groups of people living with dementia, sometimes with family carers, sometimes without, who meet in a cafe or pub for a chat over a cup of tea or a pint.

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My preference is not to have family carers present. I have seen plenty of occasions when the person with dementia never gets to finish their sentence because the carer jumps in. Or when the carer makes the choice of drink or cake, on the grounds that “she always has that”.

And I have a lady who comes to our Shrewsbury group who after four meetings on her own now says whatever she wants, puts her own copious amounts of sugar in her coffee, and laughs a lot. And of course tells us that “he never lets me do that”.

We become very quickly disempowered and infantilised. We need time to get our thoughts out, and paper and pen to write things down before we forget them. We might spill things sometimes, but so do you. We might choose to wear some pretty wacky clothes, but what’s the harm? We might even eat unhealthy food! Well what on earth does it matter?

What matters is that we go on making our own choices, that we live as we choose. That we meet others, have a laugh, get on the bus, do what makes us smile.

Last week three good friends stayed with my wife and I for a few days. We had a staycation holiday at home. With three dogs as well. I’m still reflecting on how they saw me, and how I managed the situation.

I don’t have an image of myself as a person who’s confused or irritable, who needs to clear the decks. I wonder what others see when they are with me for days.

I didn’t manage the situation well. When your brain slows down, and parts really work pretty badly, it’s hard work processing the incoming data. The textbooks describe it as too much stimulation. To me it’s noise. Just noise.

I can cope with it for a day, maybe two. But then it just wells up and up.

It’s the noise you hear when a radio is badly tuned. It’s the noise you hear when lorries and cars and motorbikes with holes in their exhausts drive past on busy roads. It’s the noise that makes me take my head in my hands and scream. Because I can’t cope with it. It screams in my head.

Noise from emptying the dishwasher. Noise from dogs barking. The kitchen cluttered with glasses, wrappers, plates and food, when I’m trying to think through the sequence for cooking the meal.

And people saying things that I can’t quite catch because I’m not tuned in. And I have to ask “what was that?” Several times.

You know the glottlestop? That is a really undervalued part of language. When you’ve got failing hearing, and your brain can’t process stuff quickly, absence of glottelstop is a disaster. It turns English into a foreign language.

Same with plosives and sybillants. Words are no longer words, just sounds that I can’t cue into.

Forgotten becomes forgo…e. How much do you want becomes How mu d y wa.

And there is no finer way to irritate your partner than to continually ask her to repeat what she said.

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The biggest unmet need is for Peer Support. People living with early to moderate stage dementia get almost no support. I worked out a couple of years ago, for the NHS Citizen project, that no more than 5% of people living with dementia in the community get any real, meaningful support. They may be visited every few months by an outreach nurse, but that isn’t the support that makes their lives better. It’s more to do with risk management by risk averse mental health services.

Oh George, are you sure you should be doing that still? Perhaps you should do less now. Avoid getting tired. How do you find getting dressed?

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Sorry, what we want is friendship, chat, exercise, brain activity, fun. And by brain activity I don’t mean organised games, and facilitated cognitive stimulation. Nor Dementia cafes inhabited by later stage people.

We want stage specific groups of our own choosing. In our everyday localities and communities. Meeting people who become friends who share our experiences.

We want to join in activities with everyone else. Go for walks or go singing with able people who have a little understanding but who treat us like just, well, people.

These things are not expensive to organise.

Lastly, I read more and more that people living with long term conditions should have an agreed, shared living plan. It’s actually usually called a care or management plan.

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I asked my GP a while ago about this, and he turned the computer screen towards me. That’s it, he said, ie my summary Care record. My current medical conditions, medications and allergies. That is not a living plan.

My Community outreach nurse sometimes sends me a printed template document after our meetings which is called a plan. But I haven’t contributed to it. It’s what she has said.

When oh when are we going to put the person at the centre of everything we do?

When are you going to ask “what matters to me?”

One last plea…

It’s not just about memory!

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The service that diagnoses dementia, or as I prefer to call it, brain disease, is called the memory service. The memory service.

I and thousands of others run Dementia Friends information sessions where one of our key messages is that Dementia is not just about loss of memory.

We must stop perpetuating this myth. Everyone with a brain disease has different symptoms, different changed behaviours. It’s about disorientation, fatigue, word finding, sensory changes, visual confusion. It’s not just about memory.

Please please please change the name. I know you think people will be frightened if they are referred to a Dementia service. But we need to call dementia dementia, not hide it away.

We call cancer cancer nowadays, and people are a little less frightened of it.

Let’s get Dementia out there, so everyone knows about it. We need our communities to accept and understand dementia. And to enable people living with brain disease to continue to live as well as we can and however we choose.

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We need to talk about…Peer Support

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There’s a lot of talk about Peer Support at the moment.

The Q community is working on it.

There was a Peerfest” day in Wales the other day.

NESTA produced a report a few years ago analysing what works.

https://www.nesta.org.uk/sites/default/files/peer_support_-_what_is_it_and_does_it_work.pdf

And there are lots of other resources for learning about it.

So what is Peer Support?

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Wikipedia: “Peer support occurs when people provide knowledge, experience, emotional, social or practical help to each other.”

I like that.

Note the “or”. You don’t have to be a trained expert for peer support to work. Just need to have lived experience and a degree of emotional intelligence and self-awareness.

At the upcoming UK Dementia Congress in November in Doncaster, there are several sessions devoted to early stage dementia, young onset dementia, and what support people living with dementia want.

I am part of the DEEP network, which has over 80 peer support groups are ind the country. DEEP is Dementia Empowerment and Engagement Project. It’s fab.

And I have started two DEEP peer groups in Shropshire. ‘Cos there’s nothing else for early stage dementia.

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What do we talk about?

If you’ve ever been to a group of people living with dementia you’ll know that conversations are chaotic but huge fun. We drift in and out of conversations. We start sentences we can’t finish. We are totally random at times.

And the great thing is? It doesn’t matter a damn.

We talk about holidays and visits. The Memory Service or taking pills. Cakes and favourite foods.

We grumble a little sometimes about our spouses or families, how they choose our drinks and meals, finish our sentences, speak for us.

And we just laugh at the absurdity of it all.

Oh and we always have a ritual of checking the date of the next meeting, because we often forget. One of my friends emailed me late last night apologising for forgetting the meeting yesterday. Which wasn’t yesterday, but next week.

Happens all the time.

We all need iPads or tablets and to use those calendars! And reminders.

We help each other with smart phone or tablet difficulties.

And when we leave, after cake, coffee or tea, we are uplifted. Ready for the next s**t coming our way.

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“Peer support occurs when people provide knowledge, experience, emotional, social or practical help to each other.”

I’ve been at several meetings in recent months where I’ve promoted the idea that for early stage dementia peer support groups are the thing that really makes a difference. And that they’re cheap to run. And that basically unless there’s some nut like me willing to organise a group it takes a little facilitation time to get one going.

That’s cheap. It’s cost effective. It’s what we want.

Until you’ve joined one you don’t know how supportive a peer group can be. And you look around in Day Dementia cafes, diamond cafes, forget me not cafes…and think, oh god, not yet. I can’t stand those. I do not want to spend time with people with later Dementia, playing games and drawing.

Sorry. It just isn’t for us.

We want, no, we need to be out and about. Chatting, shopping, walking, drinking…whatever it is that makes us/you happy. That helps us get over the everyday little that happen.

The empty boiled kettle. The miserable feeling of loneliness. The lost screwdriver. The forgotten name. And the memory of what we once were and did but now cannot.

So let’s hear it for peer support. And if you do nothing else this year, lobby your commissioners to pay the small amount that a facilitator would cost for starting peer groups in your area.

Perhaps I’ll see you at the Congress. I’m chairing one of the sessions. Make sure you say hello.

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Its the job, stupid

Does dementia matter?

I am increasingly annoyed about why the majority of clinical staff do not see that caring for dementia is part of the job.

It’s as if… no, it really is that they are trained and developed during their working lives to do the traditional physical clinical work. To deal with the diseases and trauma they see every day.

So, pneumonia, cancer, prostatitis, back pain, arthritis, and everything else…these are what nurses, therapists and doctors do. They diagnose, treat, discharge.

And they’re really good at this. They’re professionals.

And they know and recognise that many patients have more than one condition. Multiple co-morbidities.

So for example, they’ll check blood pressure, diabetes, heart disease, and make sure the interdependencies and drug effects don’t conflict.

They’ll check that my eGFR is high enough to allow me to have an angina drug which might damage my kidney.

But it seems that the brain disease that causes dementia symptoms is not recognised as something they should know about and be able to react to and treat appropriately?

25% of inpatients live with dementia. But (I guess that) no more than 5% of staff really know how to provide appropriate care and conditions for them.

Oh I know that induction programmes for new staff will include half an hour on dementia, perhaps a short guide to the Butterfly Scheme.

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And there’ll be an e-learning module somewhere…which is a complete waste of time. No, it is counter productive, because it will certify that the staff member has done dementia training that year.

My acute trust says that over half their 5,000+ staff have had dementia training. Hmm.

Inpatients living with dementia stay in hospital for some 30% longer than others. They more often are discharged into a care home, because they have been disabled and infantilised by their stay in a ward, and because their capacity to adapt to living in a hospital is severely reduced, which impacts their recovery. And then discharge teams won’t take the “risk” of returning them to their homes.

The cost is staggering. The insult to those patients is appalling.

If all clinical staff were really properly trained, and if they all addressed patients’ needs related to brain disease, as well as their other conditions, there would be shorter stays, better health outcomes, and reduced social care costs. Not to mention improved quality of life for the patients.

But no, dementia is not what we do. We do diseases. We do traumas. Injuries.

Well… get real.

Dementia results from brain disease. Physical brain disease.

And it’s your job!

It’s not an add-on.

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It’s not an option, which can be ignored when times are difficult.

You can’t pick and choose.

Caring for someone, healing someone, is about the person.

You can’t cure the brain disease that causes dementia symptoms. Bu you can make sure you provide care in the right way for that person, and not in a single standardised way, the same for everyone, and good for no one.

If you ignored co-morbidities when treating a condition and your treatment killed a patient you’d be struck off.

So don’t ignore the brain disease.

It’s the job, stupid.

No cliff edges please

No cliff edges please!

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And I’m not talking Brexit.

I was invited to speak (with Rachel and Peter) about DEEP at the current Dementia UK conference for Admiral Nurses.

On my way up by train from my little market town, 8 miles up the line a very spruce young man sat down and got his laptop out. We all do it now. Tablet, laptop, phone…and like on tube trains we try hard to ignore each other.

But I saw this guy was wearing a 2million dementia friends badge, and the big blue outline forget me not, on his lapel.

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Well. I had to ask, didn’t I.

Turned out he was the Ops Director, local services, for Alzheimers Society. And he lives up the road!

What a lovely, enthusiastic man. Passionate about dementia (of course).

We talked. And he said he is keen to get local Alz Soc staff and Admiral Nurses to work together more closely. Which is also what I want.

Of course, there are organisational barriers to overcome. Charitable aims, money, brand, defensiveness…just like the NHS economy.

But for us, people living with dementia, when we need support we need continuity, ease of access, consistency in skill and knowledge and approach.

At the moment it seems that we have Alz Soc staff to give time limited support or information, in the early to moderate stages of the disease process. We also may get support from the local memory service staff.

God only knows why we still call it a memory service. It’s time to dump this falsity which perpetuates the myth that brain disease is only about memory.

Then when we become more severely affected, and our families suffer, we may have an admiral nurse to work with the family. If of course there are any in your area!

Needless to say, not in Shropshire.

So we have at least three different types of support. Each with different training, priorities, levels of risk aversion, and ways of engaging.

It ain’t easy, you know. Most of us are reluctant to ask for help till we’re desperate. Miserable, depressed, don’t know what to do…then we’re in entirely the wrong state to go out and find whatever is on offer. And to know which to approach.

Of course there are also social services and the GP, Age UK, dementia cafes…

We need simplicity and clarity, consistency of approach, non risk averse, personalised support, for us and our families to continue to live as we choose, doing what makes us happy.

And we want professionals who have good quality, up to date training, with easy access to other experts.

I see a huge benefit in Admiral Nurses working in the local health economy because their extra levels of training and experience and skills will filter out to other teams and services. It’ll cascade down. Bubble up. Spread sideways.

I’d like to see DEEP groups everywhere.

And Friendly Faces at “dementia services” when diagnoses are given.

https://www.bbc.co.uk/news/amp/uk-wales-north-east-wales-41265466

I’d like multi-disciplinary, community meetings with Alz Soc staff, Admiral Nurses, GPs, Dementia Service staff, Social Care/Services, where approaches and skills and experiences are shared. Where individuals can be discussed and approaches agreed.

Because, what matters is not the organisational branding, but the people affected by dementia.

We are who you exist for.

Ask us what matters to us.

We’ll tell you.

And once again, hats off to Dementia UK for creating their new user group, LEAP.

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Together we can.

Believe me. I’m always right. About me.

Believe me. I’m always right. About me.

I was listening this week to a radio programme about personalising health and social care for people…

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Reducing unnecessary hospital admissions…

Providing health care at home…

Treating people as capable of deciding how they wanted to live and deal with risks…

And I was electrified when I heard something that went like this:

“You’re always right about yourself. No one else can know how you feel, what you enjoy and fear, what makes life worthwhile. Everyone else is always wrong.

I may be meandering back to my theme of who knows best? Nothing about us without us, but I’ll pursue it a little further.

Professionals, i.e. people employed and hopefully trained to do specific jobs in health and care, are expected by us all to know stuff. We need to trust them with our lives and bodies.

Trouble is, these professionals have high levels of risk aversion. They fear allowing people like me to take risks with our lives.

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The example on the radio was of a person who was unsteady and frail, but who really did not want a Zimmer frame. And wouldn’t use it if provided. What do you do? You can’t just ship them into a care home! Nor should you.

What you do do is help the person in other ways to move around as safely as possible. A few little tips and tricks. Some exercises perhaps. And you let them get on with their lives as they choose.

Do you insist that someone stops having their gin or beer in the evening? Well, not if that is what allows them a degree of wellbeing.

But of course health professionals don’t like this. Understandably, as a result of their training. And they have to fight their instincts to stop this paternalistic behaviour.

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We want you to give us the appropriate medical advice and care choices, but you must let us decide whether we want to accept them. We must make our own choices.

Professionals, you may be able to look after us, but don’t impose yourselves on us. Don’t try to wrap us up.

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We probably won’t take stupid risks, any more than anyone else does. And they do!

But that’s our choice.

And remember, we are always right about ourselves and how we want to live our lives.

It’s our choice. Not yours. Please help us to live as we choose.

And please don’t design services for us which we don’t want.

Better still, provide services that we do want and value. Like peer support groups.