Passing on my hobby horse

Have you noticed in recent months that everyone passes on?

We don’t die. We pass on.

Sometimes you pass away, but the fad is now that you pass on.

This is my hobby horse today. 

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I ride it roughly, curse it, kick it, but it just trots on calmly. Where to, I ask?

And more to the point, where do we pass on to?

If you pass away, at least it means you are gone. Don’t know here. But gone. With a sense of never returning. Of finality. 

But passing on seems more active, more positive, as if there really is somewhere you’re going.

Now, we don’t really talk about what may be beyond death. Nor about the actual act of dying.

We should.

If you really truly believe we go to Heaven, whatever that is, then yes you pass on. But make no mistake…you die first.

If you don’t know what you expect, or if you expect oblovion, then…you die. 

If you pass away, you imply a soul that moves out of your body, away. Don’t know where. But it disappears. Or just dissolves, disintegrates. Like life itself.

If you die you cease. Your body stops working. Your brain stops working. You are…no more. 

And, my hobbyhorse tells me, if we call it anything other than dying we are hiding from death.

One of the six elements of the dementia model is “dying well”. That might give you pause for thought. 

Dying well? 

I think this means being prepared in your mind, and free of pain in your body. I don’t think anyone is ever free of the pain of memories, and regrets. 

I think dying well means dying in a place where you feel at home. With loved people, loved animals and loved things around you.

I’d like to die in a wood. Preferably in spring or summer. Preferably during the dawn chorus.

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But when I am dead, I don’t actually matter. It’s those still living that have feelings and practicalities to deal with. And we need to have talked about these before it happens. We need to understand what each of is needs when the time approaches.

If we ignore death because it is uncomfortable and unknown we create bad deaths.

Those we love will not know and respect our wishes. Nor will they know or understand their own.

If dying well is to mean anything we should all have prepared for death.

Spiritually and practically and emotionally.

“Dying well” in any strategy or model for dementia should include trigger points which encourage people to talk about death. Health and care staff should regularly open the subject, and when you are ready to talk you will. But probably sooner than if death is ignored and hidden away.

Faith helps a few, but most of us either choose not to believe or do not know whether to believe, in another world or a higher being, life after death or hell.

Me, I think that there is either nothing at all, or it will be good. Why would you have a loving god who sentences you to eternal damnation?

But that is the future…or not. What matters is living now – and being prepared for dying.

So let’s embrace life. Let’s s take risks. Let’s have joy. 

And lets embrace the only certainty in life…that we will die.

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Why are we so white?

Why are we so white?

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I had the great pleasure to travel to Nottingham yesterday to work with a small group at Trent Dementia. The travel was not a great pleasure, via three decrepit trains but two wonderfully helpful buses/drivers.

I met four lovely people, Jane, Shelagh, Jean and Ghazal. We were starting to plan an event in Nottingham to kickstart engagement between and with people living with dementia. There seems to be little going on there for PLWDs, no DEEP groups. although there is a DAA.  But I wonder how active it is as no one round the table had heard of it.

So we tossed around some great ideas, and focused down on having a number of small room meetings where people could talk about and share feelings about specific areas of living with dementia. We wanted to avoid a big auditorium type conference, as they achieve very little action usually. And people living with dementia need small groups and the chance to ask for clarification without losing track.

But then we got onto the cultural and ethnic make up of Nottingham. Four out of five of us were white and well educated and articulate.

How could we reach, and get people from, the rich mix of cultures to come to the event and any peer groups we set up? 

I understand that dementia is more prevalent in people of Asian ethnicity than white English. And they often live in a culture of keeping it hidden at home. And then, Afro Caribbean and eastern European populations? How do we reach these people? If white British people find it hard to find support, how much more difficult is it for them?

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Lets go further. My friends at SAND (Safe Ageing No Discrimination, Shropshire) have told me (and the DAA members) about some of the challenges they face. The LGBT community often live in fear of coming out, of explaining who they are, when facing hospitals, care homes, and other situations where they may and often do face discrimination and hostility. 

Why the hell should a gay person living in a care home feel they have to hide their identity, the things that make them who they are? And why are they not involved and engaged in the work we do, promoting awareness and dementia friendly communities?

And I’ll tell you what, unless we white straight people, who are usually the majority in many areas in commissioning services and managing providers, go out and find and talk to these people, they will continue to be in the shadows.

And that’s plain wrong.

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As with dementia, we are all different. All individuals, all with different lives. No one life is better or worse than another. 

And yet…we are such a white, straight, group of activists! We really must do better.

……..

Note: I apologise if I have in any way offended anyone in this blog.  There are of course fabulous exceptions to every thing I have said. 

I think I know what you think

Well. What a day!

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I’m on my way back from London after co-chairing the morning session of the GovConnect dementia conference, Towards 2020.

It seems to have become an annual thing, revisiting the progress made towards achieving the targets in the Prime Minister’s Dementia Challenge. 

As one wag said, the platform speakers were OBEs and MBEs and a senior civil servant, in the main. Policy makers and performance inspectors.

Apparently all sorts of good things are happening around the country, across charities and councils. 

NHS England has toolkits for CCGs to use to assess the quality of their dementia provision, and to improve it where its poor. 

CQC find that around 80% of care homes are good or outstanding.

89% of emergency A&E admissions aged over 75 are asked a question to assess their cognitive status, within three days of admission. (When they are really fit and healthy and oriented.)

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67% of those calculated to have dementia have been diagnosed. (They forgot that only 20% of those under 65 have a diagnosis.)

We have over 300 registered dementia friendly communities. (Oops, I meant registered as working towards…)

“Its very clear that progress is being made across all of the elements in the Dementia Challenge”, said the civil servant.

Hmm.

I was beginning to feel like a bystander at a groundhog Easter Day service.

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All is well with the world. We are doing well. We’re doing great things.

I’ve heard most of it before. 

Grand words and empty statements.

At the start I asked speakers to give us evidence of what was happening. Not just tell us grand statements. Evidence. Measures. 

So we got the diagnosis rate, and the CQC figures.

We did not get any CQC evidence about the quality of dementia care provided in these good care homes, because they don’t inspect and report on that. It’s not in their five domains.

We didn’t get the number of people who receive worthwhile, personalised support after diagnosis.

We didn’t get the number of those emergency admissions that were assessed and referred on for assessment, appropriately. 

Because the data isn’t being collected. It must be out there, but no one is looking.

We were told that 100,000 staff (somewhere?) have done Tier 2 training. And that everyone whose role has regular contact with people living with dementia should have done the Tier 2 training.

Over a million people work in the NHS alone. Add other care staff around the country. Say 1.5 million? We should get there by 2040.

Meanwhile, many people living with dementia and receiving care in the NHS or Care Homes or at home are getting lousy care. And many carers are getting no support.

So how are we getting on?

I think you know what I think. And I think I know what you think.

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If they asked us we’d tell them.  But that would be a little too uncomfortable, wouldn’t it?

Seek first to understand, then to be understood

I joined a group of GPs in Birmingham recently for an afternoon CPD Training in Dementia.

What a lovely group of people who made me very welcome.

I spoke about my own early symptoms and diagnosis, and then about what matters now, and what is available as support. They said I told them things they had never fully realised before, mainly that it’s about more than memory.

I showed them the new Young Dementia UK diagnosis tool for young onset dementia. Not one of them had heard about this. They were very interested.

During the afternoon there were many comments about the lack of post diagnosis support for people living with dementia. There were still elements of the old “what’s the point of diagnosis if there’s no treatment, cure or Support?” But it was said from frustration that support was not being provided.

They felt they might be raising expectations that once you have a diagnosis something will be provided to help you live with it. And it isn’t.

I made the point about preparing for a time when you might lose capacity. And doing things you might have been putting off. And the sheer relief that many feel when they understand why they have been feeling as they have for several years.

So I think and hope that this group of 25 GPs left with better understanding of what matters to us, and a fuller picture of all the possible symptoms.

But there is a massive irony in all this. and it seems to be lost on them.

Clinical Commissioning Groups choose what healthcare to provide in their areas. They commission services, from nhs providers, private providers, voluntary providers.

And who are the commissioners?

GPs.

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The wonderful Lansley reforms eight years ago put GPs in charge of choosing what services should be provided in their local areas. Because they know best.

I remember being told time and again that the CCG was a “member organisation”. I questioned this time and again too. What does it mean?

The answer was that all GPs in the area (for example Shropshire) were effectively the CCG. Everyone had a direct say and involvement in choosing and controlling services.

Of course, most didn’t want this.

And a curious thing happened. GPs who joined the CCG board gradually changed. They morphed into traditional commissioners. They lost what made them local and special.

They had to play the NHS organisational game, to their central rules.

So when I hear a roomful of GPs decrying the lack of commissioned support for people post diagnosis, I think…

Nothing has changed, has it?

Local decision making to central rules means…

Nothing.

I’ll tell you who knows what is needed locally.

The people with the disease.

The people living with dementia.

But they don’t ask us, do they!

We’ve got the evidence. We can provide it, because we’ve looked for it. The proof that the benefits are measurable and hugely outweigh the costs. Savings everywhere.

That’s why I’m working, along with many others around the country, to establish real, trusted engagement between people living with dementia and providers and commissioners.

Not the usual, formal, across the table challenging. Or brief breathless meetings which start with ‘I’ve only got ten minutes…”.

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No. Let’s sit down over lunch. Let’s chat. Let’s hear each other. Listen to our concerns and aspirations on both sides.

In fact, remove the “sides” barriers.

We’re in this together for the same reasons.

“Seek first to understand, then to be understood.”

“Win – win solutions.”

Stephen Covey was absolutely right.

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Self Managing dementia…the perfect oxymoron

Just picked up this up in a tweet, so here are my thoughts.

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I don’t live alone…I live with my wife.

Diagnosed four years ago age 62.

I have mixed dementia.

Self management… now, I don’t like this term, or approach. Supported self management yes.

Self management is being left to get on with life on your own. But we’re all at different levels of activation and education and living conditions, so most or all of us cannot manage our condition(s) “properly”, ie in accordance with medical guidance. If each of us could follow the guidance on life style, diet, activity, we would most of us not have the conditions we now have. That doesn’t mean we are reprobates and incapable of living reasonable healthy lives. It means we’re human. And we have experiences and feelings that control how we behave.

I believe each of us needs occasional support to help us live more healthy lives…ie to self manage. It’s Public Health really. Except it isn’t!

As a diabetic I don’t receive the help I need to keep to a perfectly healthy diet, so I use pills to maintain blood sugar, and I occasionally eat a biscuit or crumpet and jam. Like last night. Because I lose the will not to! It’ll be insulin next.

Can we self manage dementia? What does it mean? Given there’s no cure it must be about activity, social engagement, diet, alcohol and smoking…do we add going to bed at 8 because we’re so tired? What do we do on days when we’re completely in a hole? Self management is just saying go away and get on with it.

(Yesterday I was told that research shows that one glass of wine and one cigarette a day reduces the risk of developing dementia!)

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So supported self management is what we need. Through dementia navigators or companions, or admiral nurses when we hit crisis, and through peer groups where we support each other.

What do health professionals say to me? Don’t take risks. Do less. Don’t get tired (!). My GP doesn’t have time to discuss with me my life with dementia, unless I have a specific related issue.

And when people get further on into dementia how can they self manage anyway? I may not be able to make a cup of tea or put my shoes on. What happens then?

Self management is just saying to us, go and get on with your lives as best you can. Here’s what you ought to do, now do it if you choose. So we have a choice as a society. We either regard brain disease with dementia as something that happens, tough and all that, but it’s … life. Or we say actually, just like if you have cancer or diabetes, or glaucoma, we’re going to help you get through it, and if it’s terminal we’ll help you as you approach your death to be pain free and to have around you whatever makes you comfortable and loved.

I think you know which I’d go for.

Finally, yes of course I self manage. It’s called living as best I can. My wife helps me in some very practical ways, like looking after clothes washing and cleaning, since I just forget to do this. And she is a listening ear when I need one. But broadly I keep it inside because no one wants to hear my negative thoughts, and I don’t really want to think them either.

I am in control of my life. As long as I ignore the risk averse nay sayers. But it often is becoming a fight to keep going. It’s not just Dementia…for me it’s the other conditions I have, on top of Dementia. It all wears me out. And I have no professional support for that. Clinical appointments are short, sharp and transactional. And no one speaks to the others. So it’s like bouncing from one corner of the boxing ring to another. Waiting for the next hit to get me.

Self managing dementia?

It’s the perfect oxymoron.

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Do we have any?

A few weeks ago I wrote about what I hate about organised activity groups. And I got a lot of responses from people who agreed. We really don’t like being organised to do things we don’t individually choose.

But, and there’s always a but, everyone enjoys different things, so while I might not enjoy singing songs I’ve not heard of with people I’ve never met before, around a small table, at least one person at that group did.

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And I talked this week to a couple of PLWDs at our Market Drayton DEEP group who really enjoy “singing for the brain”sessions. They’ve both sung in church all their lives and they love being in a lively, cheerful choir. And of course they know just what they are choosing to do when they go.

This comes back to dementia friendly activities and groups and communities. The best things that keep people engaged in their communities, and going out and engaging, are what people have always enjoyed doing. Not usually activities organised for people living with dementia by someone who doesn’t have dementia. They think they’re doing the right thing of course, but…

So I returned to the local group I went mad over last month and had a really nice couple of hours. There were two of us living with dementia, one partner, and one younger guy who had heard of the group and wanted to talk about symptoms that a relative might be showing. As soon as we got onto talking about living with dementia it became really interesting snd personal. We were no longer trying to be pleasant and think of things to talk about with strangers. We had common ground, common cause.

It became what I would call a good support group, allowing us to share our thoughts, our feelings and our difficulties. How do you meet people when you’ve recently moved to a new area? What do you do if you think a relative might be showing signs of dementia? What’s it like feeling isolated?

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And at the Market Drayton group we talked about how difficult it is to meet people who don’t know you when you know you can’t keep a conversation going as they expect. That’s one of the big reasons for social isolation. I feel it too. When you can’t keep up with a conversation, and you get stuck finding a word or thought, there’s a long pause…a lot of long pauses…and others can start to wonder what’s going on. And get embarrassed. You can’t have the casual easy conversations of the past, beyond the predictable, well remembered phrases.

It takes time, and hard thought, to talk to people you don’t know well. And to listen to more than one person speaking at the same time. So we opt out.

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I can do focused meetings, when I have prepared, I know the background, the terminology, and it’s on my terms. I can’t do the others. So parties and most restaurant meals are out. One of my strategies is to sit at the end of a table so I can be quiet, observe, and not feel embarrassed and lost.

We talked about driving. Two of us are going through the DVLA renewal process at the moment. I’ve had to complete about ten forms, with more coming in by post as they wade through my various diseases, many of which might…might…have an impact.

When do you decide to stop? Probably before they decide for you.

It’s when you have one near miss too many. When you can’t trust yourself to remember to take extra care, have that extra check. When you look in the mirror and see a car up your exhaust and you wonder where it came from. But it’s a huge step away from engagement and independence to stop driving. It’s what we all fear.

This coming week I’m going to the first meeting of a new group called PALZ, in Shrewsbury. PALZ stands for professionals with Alzheimers, and is the name of a number of groups in Australia. A local solicitor (for the elderly) has started this group here, and is aimed at providing more formal meetings for those people with Dementia who may have been used to formalities in their working lives. I have had several debates about what “professionals” covers, but basically it doesn’t matter. It’s just another, different style, group. It’ll suit some not others.

One commissioner here thinks it’s exclusive and cliquey. I don’t agree. I think that every group or activity suits different people. And the more groups we have the more people living with dementia will find something that’s they enjoy. What’s more, no one will be turned away! Everyone welcome. (It’s Tuesday 20th, 10.00 at the conference centre at Royal Shrewsbury Hospital.)

So my conclusion?

We need more and more peer groups. By stage not age.

I don’t care whether they are for ex-miners, or servicemen, or lawyers, or accountants, or housewives…labels are irrelevant.

Just please start up more groups.

It doesn’t have to take much or any money. Just time and commitment and willingness.

It’s what social prescribing should be all about. Keeping us all engaged in our communities. Avoiding loneliness and despair.

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And it’s what social and health commissioners should be commissioning. Cheap but hugely beneficial. Cost effective. Reducing GP visits, A&E attendance and admissions, drug use, and additional co-morbidities.

I understand that Alzheimers Society is withdrawing from organising groups like singing for the brain and support groups. They’re also withdrawing their staff support for Dementia Action Alliances. They may have good organisational reasons for this. But who is going to facilitate them in the future?

There are always people in communities who want to run groups and to take local action, but these are not enough. There is a time bomb of frail elderly ill health that social models of care can do much to alleviate. But we continue to spend on traditional health care models in acute hospitals. We need to radically redesign out of hospital care to provide the preventive social care and activity that keeps people independent for longer.

Leadership? Innovation? Change agents? Balls?

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Do we have any out there?

Let’s make Britain Great again!

A world without diabetes

Diabetes is a disease that is invisible. The disease is hidden, often not diagnosed until it has caused damage.

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Type 2 diabetes is often brought on by being overweight, eating an unhealthy diet, and too much of it.

The UK spends around £9bn a year treating people for type 2 diabetes. (£1bn for type 1.)

The total direct and indirect costs of type 1 and 2 diabetes is around £24bn a year.

It can usually be avoided by having a healthy lifestyle…reasonable exercise, good diet, healthy weight.

The results of diabetes include loss of limbs, loss of eyesight, heart disease, renal disease, extensive neuropathic pain.

I wish to propose that this disease, which is invisible and to a large extent avoidable, should not be treated.

The direct health care savings of £10bn could be used elsewhere to improve care and introduce new, expensive drugs and treatment, for example for cancer. After all, I’m sure we all agree that cancer is a disease that must be eradicated, and that anyone developing cancer should get every possible support and care.

We heard Lady Tessa Jowell speaking passionately from personal experience about this need for more investment in cancer treatment in the House of Lords just yesterday.

My proposed new approach to diabetes would provide a powerful lesson to the population that if you don’t live healthily you will die. If, on the other hand, you have cancer you will be taken care of.

There would soon be very few amputees and partially sighted citizens, with associated savings to society. Tooth decay would reduce dramatically as sugary foods became a thing of the past.

Union jack: hugely symbolic.

And by devoting resources to cancer treatment society would gain extra economic activity and resultant higher tax receipts as citizens continue to work into their late 60s and 70s.

Citizens would live well with cancer, rather than dying painful, unnecessary deaths. Citizens’ learned life and job skills and knowledge would not be wasted. Families would not be torn apart.

So, please, let’s stop treating diabetes, and devote our resources to cancer.

After all, we don’t support and treat people living with dementia. As a protected group under disability law, it is wrong, indeed illegal, that one group is singled out for prejudicially inferior care.

But the equalities laws clearly do not apply to disease groups that are invisible, like mental Illness and brain disease. So let’s add diabetes. Society would be better off.

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Let’s make Britain great again. No cancer, no diabetes, no dementia.

If you can’t see it, it can’t exist.

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[Disclaimer: for the avoidance of doubt, this is satirical, not to be taken literally.]

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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