Congressional blog

Well I don’t think I can write a poem in twenty minutes, like Wendy Mitchell did last week at a DEEP meet up in London. She took fifty words chosen from Great Expectations and just made them into a wonderful, clever poem, about living with dementia.

Just now and then I meet a genius. 

But today at Congress I am meeting lots and lots of wonderful passionate people working around the UK (and further) to improve understanding of and care for living with dementia.

Yes I do my bit(s), but we all do. 

We write blogs and we tweet.

We record and share our thoughts in dementia diaries.

We coach and empower people, who never thought they could, to speak to power, to decision makers, money spenders.

We spend our time in meetings, and at conferences. We encourage, support, inspire each other, and more others, to join in.

We listen to each other…about our difficulties and our changes, about our partners, husbands and wives, about how we are changing.

And as was said several times today, half an hour with peers with dementia changes the world as we see it. The smile returns, inwardly and outwardly.

Resilience is something we all need. But when our brains deteriorate and falter we can easily and often feel alone and detached from the world around us. 

Deciphering what we see, hear, touch and smell becomes longer and more taxing. Understanding and taking in what a speaker is telling us can just disappear, words floating past us as we try to find our place in this world. And we stand up and have no idea what we heard and walk away.

And life goes on.

We will go on. We will most of us meet again next month, next year. And we will have achieved great things and small things. We will have nudged people towards better understanding. Towards better provision of support and care.

A few more people with direct payments for what matters to them.

A few more health and care staff with level two training in dementia skills.

A few more Admiral Nurse services.

So. Thank you Congress brothers and sisters for being inspiring. We all need it.

Dementia in the media…unsound and unbalanced

How is dementia portrayed in the media? In newspapers, films, newspapers, and social media?

I know from my own work that some journalists and organisations do try hard to use positive language and images. They ask us, the people living with dementia, and the organisations with expert knowledge, how they should portray living with dementia. They might try to sensationalise, but they do ask us to edit their copy, to change what we don’t like.

But journalists and media publishers primarily want to sell their product. They want to catch our eye. So sometimes they use language which makes you react, makes you keep reading (or watching) so you stay long enough to see the advertisements.

If their intention is to inform (and that is a big if) they often miss their target.

They use simple, colourful language because they want to avoid ambiguity and subtlety. They don’t really want you to think. They just think they have to make it as easy as possible for us, the poor uneducated readers.

How patronising can you get?

Have a look at these images? ….

Look at these screenshots and decide for yourself how they make you feel about dementia?

What is your gut response?

How would you feel, do you think, if tomorrow you were given a diagnosis of dementia?

What would you think about your future?

There are of course wonderful exceptions in the media.

Channel 4 and the BBC and other organisations do of course work hard to present a non stereotypical model of dementia. And The broadsheets may try to be less sensational or hysterical too.

But the use of stock images in newspapers and magazines is usually dire. (Show pictures) many of these are from one agency. Why were they chosen? 

In my experience charities try to use real photographs of real service users. Though I remember when I worked with the British Red Cross we saw the same people in leaflet after leaflet.

Now and then even the Guardian gets it wrong. (Show screenshots of Polly Toynbee article)

This piece really annoyed some of us. Just look at what Polly Toynbee wrote. “Let us do ourselves in. We are out of our minds.”

I wrote a rather offended blog response to it, which attracted a lot of support.

….

So why does this all matter?

Why do language and images matter?

The people I work with around the country, who live with dementia…we LIVE with dementia. 

We don’t let Dementia stop us from living.

Dementia does not define us.

Words and pictures are how we understand abstract things, like feelings, and hopes, and fears. If you only ever see these stock photos of people sitting vacant in an armchair, or gripping their forehead in apparent pain, what will you think dementia is like? 

If you only read or hear of people suffering with dementia, this cruel, horrific disease that makes people burdens on their family and society? What will you think?

I am me, just as I was before my diagnosis four years ago. The same things give me pleasure. I still breathe, and feel, and think. I can still stand up here and talk to you. I garden. I walk my dog. I use my ipad and iphone. 

When I was diagnosed, the community sister from the memory service told me to be careful now, not to take risks, to avoid getting tired…to do less.

Why? Why would this do anyone any good?

Yes, the brain disease that I have will one day probably disable me. And indeed, I do consider myself to have a disability. For legal purposes only. I have rights. Disability rights, equality rights, and human rights.

But I continue to live as I choose. 

I have learned how to work around the difficulties I have. As we all do.

We all have good days and bad days. Bad hours even.

And what you see and hear now, today, is different from me at home on a bad day, or resting in the evening.

A diagnosis of Dementia is not death. It is not the end of life. Although it is progressive and terminal.

It is usually given after several years of symptoms. Brain disease, like any disease, starts on a day, and develops, and eventually you notice. Brain disease will be present in your brain for up to twenty years before you really notice the symptoms. And people deteriorate at different rates.

So that day when you sit with a doctor and a memory service nurse to be told you have dementia, the last thing you need is to be told your life is effectively at an end.

Language

Doctors have for centuries use the word demented to describe their patients.

“suffering from dementia.”

• INFORMAL•BRITISH
  behaving irrationally due to anger, distress, or excitement.”she was demented with worry”

◦synonyms:

◦mad, insane, deranged, out of one’s mind, not in one’s right mind, crazed, lunatic, unbalanced, unhinged, unstable, disturbed, distracted, as mad as a hatter, as mad as a March hare, stark mad; More

In the last two centuries people whose brains were diseased have been locked up, away from public life, in asylums, or mental hospitals. In cells, or huge bunkbed dormitories. They were described as lunatic, deranged, unhinged, demented, mad.

The medical establishment still sometimes refers to patients as demented, or dementing, as a medical description. 

Other words commonly used include suffering from dementia, cursed by the dreadful disease, a burden on their family and society, round the bend, out of their mind…Our behaviour (in later stage dementia) is often said to be “challenging”. And we have for decades been restrained with bandages and manacles, and chemicals.

The current legislation going through parliament about deprivation of liberty refers to people “of unsound mind”. That is intended to be new definition of a person who can be deprived of their liberty. Is that really where we are now? Going back to Victorian judgements.

These descriptions simply betray a lack of understanding…and a lack of compassion. They hark back to former times when eccentric or wild behaviours were seen as evidence of madness. They describe a model of living which is intolerant of difference. And these words perpetuate the stereotype they describe.

The description we choose is living with dementia, or affected by dementia. 

There is a model of wellbeing which includes the concept of living well. So, Alzheimers Society, the government, and others, will say it is possible to live well with dementia.

Yes of course it is, but none of us actually lives well every day, every hour, so I prefer the term living as I choose, as well as I can. This model allows me to make choices from time to time that are unhealthy, or risky, or just plain indulgent. It allows me to choose what matters to me. What makes me smile, and want to get up in the morning. That is wellbeing.

So I am not suffering from dementia. I am living with dementia. I may suffer from time to time, as we all do, whether it is self imposed or not. 

I am not a victim of dementia. I have not lost my mind. I am not unhinged. 

But I may sometime in the future be in a different world from you, when I can no longer make sense of what I see and hear. 

Nor am I a burden, if this is a compassionate society. I am just a person living with a brain disease who will need some support to be able to live my life.

If you see behaviour as challenging and eccentric, it is not because I am challenging you. It is because you do not understand what is causing it, and I cannot explain it to you. That is your challenge, not mine.

Please, We want a positive image of living with dementia. And each one of you can help us achieve this by playing your part and challenging negative, stereotyped portrayals of people living with dementia.

Munchausen by dementia

We are definitely not representative

Nope. You’re right. 

We are not typical of people living with dementia.

We are not the usual people who visit GPs and clinics for diagnosis. 

We should be ashamed of such hubris, standing up and talking for people living with dementia.

Of course we have absolutely no right to claim that we know what it’s like.

And indeed, it is highly probable that we have a wrong diagnosis, since we can obviously talk coherently about our lives.

When we go up on stage you should not listen to us.

When we describe our symptoms, don’t believe us. 

We’re lying. Making it up.

We all have a psychiatric condition that makes us need to have an illness to feel important.

Munchausen’s?

Let’s face it; we are all deluded seekers of headlines and self aggrandisement.

I do agree with you…we should be sitting at home staring out of the window.

Frothy blobs dribbling down or chins onto our shirts and skirts.

We should be unable to eat or drink without help. Unable to speak.

Unable to remember what day it is, or who you are.

So, please do just ignore us. Take no notice.

We don’t fit the mould. 

We are still active in our communities five years after diagnosis. That’s wrong. The diagnosis must be wrong.

We are still travelling around the country. 

We can speak fluently in front of a hundred people.

We look normal. 

It must be wrong.

You told me you cannot believe I have dementia.

You told me you often lose your keys, or forget why you went upstairs.

If you’ve got it, so have I.

And of course, you are right. Spot on. Of course I haven’t got dementia.

I made it up for fun. Because I need to be the centre of attention.

And because I want benefits and support that without diagnosis I could not get.

Yep…absolutely right. I get so much support you wouldn’t believe it.

Yes I want a blue badge to save me walking so far. Because I am lazy. I just don’t want the hassle of parking with everyone else. And it saves me paying for parking.

It is not because I get lost, or because my wobbles may cause me to fall over.

It is really great fun pretending to have dementia. 

So please remember…

Don’t listen to us.

Take no notice when we say we have bad days, or we cannot answer unexpected questions.

Take no notice when we tell you we cannot see things in front of us, and when we claim we burn ourselves when cooking.

When we say we cannot remember how to tie shoelaces, or fill a kettle.

When we say what you see is not what we are like at home.

You are right. We are not what you see in newspapers or on television.

And of course we have no right to come out in public and ask for support. And care. And help.

What we should be doing is hiding away where you cannot see us.

Then we won’t exist. And you will know that you are quite right.

You can then speak for us. Oh how wonderful that will be. So much easier for us both.

You can then decide what you want to give us. And you can say we are of unsound mind, and cannot make decisions. And you can lock us in, and tie us down, and cosh us with pills. 

Like the good old days. The good old days.

Well, I have enjoyed our conversation, and I think I now understand. 

Now, where’s the bedroom?

A few odd moments

Just had a few odd moments.

I could not place some names in my emails.

They meant nothing at all.

Blank. Fog.

Who are they? 

Why have I got email from them? 

When did I meet them? How do I know them?

Have I missed something?

And yet, and yet…

I just presented at a workshop for a new dementia strategy for our local community health trust.

Dementia is everyone’s job.

That is what I say anyway.

And I spoke fluently and brightly about dementia…brain disease.

And people said they would never think I could have dementia.

I don’t blame them at all. I sometimes wonder myself.

Just for a while.

Then I look through my email and the names mean nothing at all.

I just cannot find them in my memory.

I have to concentrate so hard and keep my brain engaged on what I do to keep my act going. And it really does feel like being an actor in a loosely scripted drama. Lot os improvisation, but the less the better.

Some of it is easier…Talking in public about dementia, for example. Done it so often now that it is pretty much locked in.

But that pushes the rest out of reach. 

And I need some down time and quiet to re-activate or redraw my wiring diagram.

……..

There are times when I get tired of doing this, talking about what services should look like, what matters to us, what is missing…and why.

As someone said to me today. It’s all very well going to these meetings and talking, and writing down ideas and observations. 

What about the HOW? 

How will “we” make these things into a model and make it happen?

Or, rather, who will make them happen?

Who will push for commissioners to commission different services, and services differently?

Will the Trust leaders be passive and simply continue to provide what is asked of them? Or will they speak up and lobby on our behalf? 

We’ve told them what matters to us, so we can live as we choose, with the support that enables us to do what makes life worthwhile.

What is their responsibility? 

Is it to their commissioners or to their community?

To their paymasters or to their community

Human rights do not depend on funding, they are fundamental.

Human Rights do not depend on funding. They are fundamental.

 

I am trying to get my head around what support should be provided for people living with dementia. What will help us? What we have a right to. And why this is justified.

I’ve looked at some of the guidance and pathways from NHSE and NICE. 

I’ve looked at guidance about cancer pathways too.

But I can only find documents relating to prompt diagnosis and treatment. Not post diagnosis support.

Most dementia documents, including the prime minister’s 2020 challenge, also refer to diagnosis, or at least the start of testing, within six weeks of GP referral. They steer clear of what is to be provided afterwards, other than care planning, and advice and information about keeping engaged, and obtaining benefits.

When I spoke to the GP chair of our CCG last month, he said they didn’t have any money for more dementia services. They have two pilots for dementia navigators, till next year. Evaluation pending. 

And funding to support Alzheimers Society activity locally is being cut each year.

With cancer, you get the diagnosis, you get treated, often for years, you recover, you live in remission (with the fear at the back of your mind)…although around half will die within five years.

With dementia you get a diagnosis, you may be eligible for a drug to reduce the effects for a while, and you live on, slowly (usually) declining.

So what is the difference, and why do we want more?

A person with cancer…except brain cancer…usually retains their cognitive capacity. They can manage their lives in the same way as before, though with probably changed emotions.

A person with dementia is losing their cognitive capacity. They therefore cannot manage their lives in the same way as before the disease, and they therefore require help to continue to do so.

This is the key. It isn’t that post diagnosis support is sort of nice if we can afford it… It’ll just help people who get upset at times…

Post diagnosis support is what enables plwds to continue to live their lives as they choose, to navigate the complex world around them which they are losing capacity to deal with effectively.

It will help them live their family life, find happiness, do what gives them pleasure, and get the support that makes life possible. And these are fundamental Human Rights. Not optional.

That is the bit that all these pathways leave out.

Except two, published by the government itself.

What to expect from health and social care services following diagnosis. This document uses the word “should” throughout, not “must” or “will”.

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

And the Prime Minister’s Challenge 2020, Roadmap to Delivery.

https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/507982/PM_Dementia_Annex_2_acc.pdf

Both of these pathway documents include Dementia Navigators or Advisers.

Essential people who know local systems and services and communities. Who know the people they support. Who are available for a chat, or advice, or support. Who remain with you for years. To support you when you need it. Who help you navigate systems and benefits.

There’s no mention of Admiral Nurses, although the documents do refer to specialised support.

So what is it that we need, that we have the Human Right to receive?

• Early Diagnosis, at any age.

• Information about LOCAL services and groups.

• Dementia Navigators throughout our journeys.

• Shared living planning, owned by us and our families, contributed to by all our health and social care professionals and others.

• The services of GPs, Occupational Therapists, Physiotherapists, Bereavement Counsellors, and others, when we need them, not when it’s too late.

• The social care and health care staff who work with us must all be trained to level 2 of the training standards 

http://www.skillsforhealth.org.uk/services/item/176-dementia-core-skills-education-and-training-framework

• Admiral Nurses, as and when we and our families need them to avoid crises.

• Personal health and care budgets to enable us to live as we choose.

• End of Life planning, starting soon after diagnosis. 

• And of course support to remain living where and how we choose (social care, assistive technologies)

************************

I think this would be a good system, though there is a lot of detail beneath each element, and delivery would vary according to local geography and demographics.

There are a million people living with dementia, and the same again of family carers. This is not a tiny little minority group. Though that would not alter things one jot. Human Rights are not just for the many.

There must be no choice for whether local commissioners provide this model. It must be consistently provided everywhere. Human Rights are not optional. They apply to every individual, always.

Lack of funds is not a defence. Human Rights do not depend upon funding. They are fundamental. In actual fact, evidence shows that the elements in this model would save the country more than they cost.

The law needs to be changed so that CCGs cannot escape their responsibilities to implement this model. NHSE and Government must be able to require by law that this model be implemented everywhere.

I call for action across the countries of the UK to demand that parliament change the law to insist that this model of support for people affected by dementia is implemented throughout and in every corner of our countries.

……..

The Dementia 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.

Implosion

Why do I write blogs about dementia?

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

Is it just navel gazing?

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

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

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

Now, the point is…

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

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

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

So I write for everyone to improve their understanding.

….

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

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

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

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

The others arrive. And all is fun and welcoming.

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

So I get a bit annoyed and withdraw. 

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

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

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

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

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

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

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

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

So I start swearing and cursing.

And throwing things around.

And drink.

And get steaming bloody angry and noisy.

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

We eat, and they go in the other room. 

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

And I storm off to bed, slamming the door.

Great day.

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

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

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

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

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

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

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

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

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

And oh so tired.

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

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

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

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

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

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

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

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

My mind is torn. I am imploded.

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

Take life at my own speed and just recover.

So we come home early.

….

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

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

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

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

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

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

Changes of surroundings are difficult to adapt to.

Noise and distractions can incapacitate you.

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

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

….

My philosophy, if I could only follow it…

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

Do what suits you, and what you enjoy doing.

Avoid what upsets you.

Dear Mr Bevan,

Dear Mr Bevan,

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

How do things look down here from up there?

Are you pleased with what you started?

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

Fabulous.

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

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

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

And guess what…they still refuse to play ball!

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

Well GPs are the masters of this game. 

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

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

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

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

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

Back to you, Mr Bevan. 

What do you think now?

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

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

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

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

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

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

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

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

Ah…oops…pay cut? 

Customer choice?

GPs?

Nah.

So its not really a business at all?

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

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

And customers cannot usually realistically move to a different GP.

Hmm. We seem to have a problem.

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

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

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

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

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

We could get same day appointments easily.

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

https://askmygp.uk/patients/

But it costs some money!

Perhaps we patients should crowd source the cost!

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

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

Bless!

What do we want? We want ACTION!

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

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

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

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

What will we say?

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

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

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

It’s here. 

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

Here are some screenshots.

 

 

 

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

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

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

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

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

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

Dementia is dementia.

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

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

How, then, do we move forward? 

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

Probably by changing the law.

If NHS is hiding behind the law, change it.

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

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

But this is dementia. 

And organic physical disease of the brain.

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

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

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

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

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

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

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

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

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

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

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

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

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

Waving or drowning?

I feel overwhelmed. Overwhelmed. Swamped. 

Today, there is just too much in my head. Too much incoming noise. Too much to process and sieve. Too much out there.

Yesterday was the same. And Saturday.

I hear a short radio report from the wonderful Lise Ducette about life and death in war torn Yemen.

I listen to politicians lying, manoeuvring, double speaking, about Brexit. (It’s about them really.)

I look at Facebook, and tap on the messages that have come through to me. 

I find that my news page and my email are swamped with people reporting what they’ve done, announcements, reports, exhortations, links to this and that…advertisements…

I am imploding and exploding…I just don’t know where to turn, how to put all this stuff in an order that makes sense, and which bits to remove and ignore. My head is full and I can’t empty it.

I can do what I do do. I can do what I choose to do.

I can do what I can control.

I still have a good analytical brain. I can still find words when I’m prepared and on the right page.

I can travel happily to meetings and events. Be away from home for a day or two. Enjoy independence.

But, like after the Birmingham DEEP event recently, I cannot go on absorbing everything else.

What I do is not generally draining. On the contrary, it is energising, with brief time lapses to recover between periods of activity.

But this constant bombardment that I have allowed in to my head needs to stop. 

Part of me wants to know everything that’s going on. Part wants just to ignore everything outside my immediate sphere of influence and activity.

Part of me is frightened of losing track, losing touch, and not being able to catch back up.

I know I’m not alone in this state of mind. Some people living with dementia get swamped during discussions, when ideas are batted back and forth, often too fast. I don’t usually.

I get swamped by a world I want to control but cannot. A world that I am at times ashamed of. Increasingly so. 

I am swamped by the constant barrage of emails, facebook posts, unwanted phone calls…that I did not knowingly invite into my life.

I’m not giving things up and withdrawing. Just taking back control. Stopping people getting inside my head when I don’t want them there.

So I am going to unfriend some people. I’m going to have another go at stopping repeat unwanted emails.

I’m going to take back control, so I can cope.

I’m going to get my head back above water.

And swim gently at my own speed wherever I choose.

Honesty and, um, niceness

So it’s cool again now. 10.00 in the evening. I’m sitting in the garden at home. The hens are making a row for some reason…hope it’s not a fox moithering. (Shropshire word). Otherwise there’s not a sound.

I’ve spent the best part of two days in Birmingham at a DEEP meet up for Midlands groups’ members. At the very relaxed Woodbrooke Hall, a Quaker Centre. 

What did we do?

Well about 30 of us shared what we do in our groups to support each other, have fun, and campaign for change. We talked about a new website for DEEP. And about what a newsletter should contain. And, which was really important, how we should work as an organisation or network to address shared issues and campaigning. 

Oh there are such lovely people in the world. Yes, I did say that. Me, a chartered accountant trained to sniff out lies and to distrust what I’m told. Taken me forty years to shake that off!

Well not completely, to be honest. I do distrust what people say unless I sense total honesty and, um, niceness.

But I have made such lovely friends. People I call family. I have two surrogate sisters now, Dory and Wendy. We just click when we meet. They make me want to laugh and cry, relax and sleep happily. (Not together.)

And the two Arachnoids? Rachael and Rachel, such lovely people with principles and values I admire and love to work with. They make us feel valued, important, alive.

So, while there were, and always will be, sadder parts of these days, it has been uplifting. What I cannot quite cope with is the whole day or more of hearing about how awful life can be for people living with dementia. It’s like having a nail knocked into my head, blow by blow, during the day. Reminding me of what might lie in store. 

Away from these meetings it’s easier to ignore IT. The DISEASE. To just do what I do, and not to think about the bad aspects of dementia and the future.

It’s unfair. And I get disturbed by unfairness. We don’t get the support and care we need. It’s different everywhere too. Why the hell isn’t there a standard, legally enforceable model of care across the whole of the UK for people living with dementia and their caregivers? It shouldn’t be optional, post coded! We have a right to equity of care and treatment.

There were some lovely, wonderful poems read out by people during the day. You are so good. Serious poems, silly poems, sad poems. You know who you are. Keep writing for us all, please.

It’s now time to take stock, absorb it all, sit back and breathe in slowly and deeply. And not think for a day or two. 

We need to just be. Between our valiant and brave work to influence change, we need to just…be. 

Remember what we enjoy. Read. Listen. Write. And re-energise till next time. Till our next meeting or blog, or tweet…

Thank you arachnoid twins. From my heart. Thank you.