Rights, equity and dementia

How long will it be before a CCG is challenged in court under the Equalities Act for discriminating against people living with dementia?

Or the government?

At least ten times more money is spent on research into each of Cancer, heart and lung disease than is spent on researching for a cure for dementia.

There are over 4,500 Macmillan Nurses in the UK providing specialist care for people with cancer.

There are 250 Admiral Nurses in the UK, providing specialist care. For people abd fa,iles affected by dementia.

There are around 2.5 million people living with cancer in the uk.

There are around 850,000 people living with dementia in the uk.

The annual cost of cancer in the uk is estimated at £9.4 billion. £30,000 per person with cancer.

The annual cost of dementia in the uk is estimated at £26 billion. £32,000 per person with dementia.

One third of people living with dementia are never diagnosed.

What would happen if a third if people with cancer were not diagnosed?

One CCG has a diagnosis rate of 60%, another 80%.

One CCG commissions Admiral Nurse services, another doesn’t.

One CCG commissions Dementia Navigators, another does not.

Human rights are not optional. You cannot choose to uphold them. They are rights.

They are universal and cannot be gained or taken away.

The Equalities Act defines nine protected characteristics of people who must not be discriminated against, including disability.

People with a long term physical health or mental health condition fall within the disabled category.

People living with dementia, diagnosed or not, are defined legally as disabled for purposes of the Equalities Act.

People living with dementia therefore have a right to equity of access to treatment, care and support, alongside that provided for people living with cancer, or heart disease, or lung disease.

CCGs are required to carry out an assessment of the equalities impact of what they do. What they commission, and what they decommission. Board reports have to include the equalities impact of what is being discussed. There is usually a report template which contains an equalities impact section.

More often than not these give a bland assurance that there are no equality impact implications.

People who are given a diagnosis of dementia are most often sent away with piles of information leaflets and details of a crisis intervention service.

If they are prescribed a drug they will be seen every six months for review, using a medical review model.

If they are not eligible for medication they will be sent away and not contacted again. They enter a personal black pit and take many months to dig their way out, if they ever do.

People who receive a diagnosis of cancer report that they are swamped with offers of support from many organisations.

There is no cure for dementia, so what is the point of wasting money on people living with dementia?

Dementia is an invisible disease. It can be ignored. Hidden away.

……..

How are we going to change this?

How can we make government adopt and enforce a standard model for supporting all people diagnosed with dementia?

How can we force CCGs to change their spending patterns to support people living with dementia in similar ways to other patients?

At the moment it seems that CCGs have the legal power to spend as they wish, based on evidence of need. So clearly in many places in the UK people living with dementia have no care or living needs, since their CCGs choose not to spend money on them.

It seems to me that we need a test case to go to court under the Equalities Act.

We need to use the law because the evidence is being ignored. A test case challenging a CCG for failing to provide equity of access to care and support for people living with dementia, by comparison with other CCGs, and other diseases, would set a precedent.

Can this be done?

You tell me.

Dante’s Inferno

I have been reflecting on what I do in recent weeks.

I’m getting tired.

It might be just a month or two of something going on with my body that I don’t really understand.

Or it might be dementia.

Or just age and the combined effects of multiple conditions.

Or it might be the continuing frustration that we all face, day after day.

We do everything we can to inform and to influence, to persuade and to cajole, to get change.

Change of attitudes and awareness.

Change in services.

Change in support.

We volunteer our time and energies.

We use our experiences and our difficulties.

We constantly search for and create opportunities to meet those in a position, and paid, to create change.

And again and again we have to bounce back from another knock down, another unfulfilled promise, another closed door.

We have to be impervious to criticism that we do not represent people living with dementia.

We try not to be rude to those who accuse us of being misdiagnosed, because we can speak and act and make choices.

“You don’t look like you’ve got dementia.”

“You don’t look stupid.”

(as Tommy often quotes)

But on and going we remain.

Until we are worn out, ground down, and our disease gets the better of us.

Thankfully we get support from some professionals and from our friends.

We commiserate and we laugh it off.

We always say tomorrow is another day.

There is a worm in our heads and in our hearts, and it keeps wriggling and burrowing, and will not leave us alone.

We cannot rest and ignore it. We cannot excise it and throw it away. It just keeps on burrowing in.

So we start again next day.

Pick ourselves up, dust ourselves off and start all over again.

This is not melodramatic or self pitying.

It is not a cry for sympathy.

It is, though, a cry for understanding and for change.

Every time we meet an influential person who ‘gets’ us, and who says they will help and make something happen we get a rush. We score.

It’s what we live for. It’s what we spend our pensions for. It’s what we give our energies for.

Imagine swallowing that magic, wonderful pill and then…

Nothing.

No one gets back to you.

No updates.

Nothing changes.

Down.

Just down and

down and

Down.

And next day the sun rises and the worm wriggles and you start again.

I really do not understand why, or how it is possible that, so many professional, well educated, thoughtful people can ignore us. Or dismiss us.

Do we not breathe?

Do we not bleed?

Do we not feel?

Are we not entitled to health and social care as much as others?

Are we morally inferior and undeserving because our disease is invisible in our brains?

Hierarchies of our paid servants sit behind their walls.

Dante’s circles of hell made modern.

Each level ignoring the other, and hoping not to be demoted down into some other, less well paid state.

And there are so many circles, like a five dimensional galaxy, we cannot hope to navigate through them.

They ignore us. The people who pay them to look after us when we need care.

It is our hell.

I hope they read this. Because I want them all to understand and to feel compassion and to take action.

We are not asking for a lot.

We are asking for our lives, and for a little help to live them.

We will die. Our disease is terminal.

Is that a reason to refuse help?

When you think the fog will clear…. but it doesn’t………

Wendy has the ability to write with insight and honesty. This is a good example. Exterior versus interior. Don’t judge a book by its cover…who I used to be versus who I am now. Between us all we are getting people to understand dementia/brain disease.
I think we generally welcome many changes, and certainly all the wonderful new friends we make. And Wendy is the best sister I ever had.

Which me am I today?

How much of the me I am now has been created by dementia and how much is the me that was?

My girls will tell you how different this character before you is from the old me. The intensely private person replaced by a gregarious alien…….but I quite like this new alien character I’ve become.

I’ve always been intuitive but am more so now. I’m lucky, I can analyse my dementia from the outside looking in as well as from the inside.

It’s not that I’ve changed physically which bizarrely people expect. The number of times people have said to me, ‘you look no different from last time’ is very frustrating and disheartening . People are often surprised that I ‘look well’…….the fact is I like walking, I like pottering in the garden, so I’m often outside in the sunshine. The change is cognitively, inside your brain, affecting the speed…

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The Human Library…A Challenging Experience

The Human Library…a challenging experience

Yesterday I gave a dementia friends session to a group in Oswestry. Disabled Oswestry, or Oswestry DO. Lovely bunch of people of all ages and backgrounds. Demonstrating how vibrant and active our communities can be.

When you have something to fight for you get up and DO! And they do. Rights. Access. Homes. Equity. And just living as well as they can.

That went well. I was cued in. Ideas and facts flowed.

Then I went to a Human Library session in Shrewsbury.

I am a human library book. One of about eight in Shropshire. And our little library is one of a hundred around the world.

It is a worldwide organisation (http://humanlibrary.org).

We aim to challenge prejudice and stigma and lack of understanding of others.

So there are books entitled Autism, Loss, Grief, Obesity, Polyamorous, Dementia, Gay Dad, Young Single Mother, Blind…

All sorts.

And what is unique is that each is unique. And every one fails to conform to the stereotype of normal in their community.

Human beings search for safety. All animals do, and we are, after all, sentient animals.

We scan for threats. Constantly.

Walking up the high street. In a crowd. On a dark night.

Threats are conceived as something different from what we expect. Something not like us, or our usual surroundings.

And if we are feeling insecure we see threats more than if we are feeling secure, safe and loved.

So, we focus our negative, safety craving thoughts on people who are different from us. Migrants, LGBTQ, religions, intellectual ability, disability…these are the people we may fear.

And they are thinking the same thoughts.

There is safety in numbers, in the herd.

To be different is to be a threat, and to risk being an outsider.

Don’t judge a book by its cover!

This is the fundamental credo of The Human Library.

Borrow a human book and read it. Ask it anything you like. Get to know it.

Allow your preconceptions to be challenged. Open your mind to others.

And see inside the cover.

And when you have finished you will know that what’s inside us is not what you thought. And feared.

So there I am, sitting waiting to be chosen.

Sometimes I am left on the shelf. Others, I am read three times.

A lady comes over and opens my cover.

She asks me questions.

And I stumble. And stare. And try to find a route into the answers.

What did I feel when diagnosed? What were my early symptoms? How do I feel now about the future?

And try as I might I could not cue into that place, that locked away place, where I would easily find the answers.

That morning I was fluent. In the moment. In the right place.

Two hours later, I was locked out.

And I think it was because I had not prepared myself on the way to the library. I had not cued in. I had not found the path because I had not imagined where I was trying to end up.

And in fact I presented a good example of how dementia can affect us. Long pauses. Staring into space as I tried to work out where that path was. Finding an answer of sorts.

She was patient. She smiled. She waited.

But that was the worst reading I have had. Because it was real.

And it was a vision of what is to come.

Guest Poems from a talented mum no longer with us…

This should be seen by everyone.

Which me am I today?

Recently I had the most wonderful email from Tove in Finland after having read my book. In it she told me how her mother was 56 when diagnosed with Alzheimers  and sadly died at 64. In the email Tove said

”She was working with the elderly  and helping them to develop their memory. And then she lost her own memory…She was a poet in her spare time and she wrote many poems before it also was taken away from her”

I asked if I could share 2 of them with you as I think they are beautiful…a very talented lady….

Let me stay

among my dreams

and memories

yet a while

Let me see the ocean

in the sunset

and the beach

Let me listen to

grandchildrens laughter

and noice

one more day, please

Don’t run towards me

you cruel reality

Stay

Take

another way

So when you finally

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For crying out loud, fix dementia care in hospitals

I need to write about the Dementia Friendly Hospital Charter.

This week I have learned a lot about the background to this welcome attempt to get dementia related care in hospitals improved.

I may not have every detail right, but this is the broad canvas.

The Charter was launched in 2015 to take forward the 2012 Right Care Call to Action to improve dementia care in hospitals.

The charter was, and is, administered by the National Dementia Action Alliance (NDAA). Their small resource/team is hosted, but not funded, by the Alzheimer’s Society. Funding comes from NDAA funds/donations, and some pots from Government through the DHSC.

The funding is sufficient to pay for very little staff time for this national project.

The Charter was updated and re-launched in 2018, to include a section on volunteers working in hospitals, and a (superb) poster was designed which will promote the Charter model and expectations in hospitals for all staff and hospital users to see.

A hospital Trust decides to sign up to the Charter and submits their application. They are sent a self assessment form to enable them to test how much if the model they already practise. 

The form is sent to the Charter team and scored, not fir approval purposes, but to enable them to find a buddy partner Trust to work with. 

There is no requirement to submit an action plan, or indeed publish one.

The Trust is listed as having signed up to the Charter, on the NDAA website.

So what’s my gripe?

I have been working with the superb (again) nurse dementia lead at my local NHS Trust for several years. She, like the charter team, is hugely under resourced. The Trust is embroiled in, and swamped by, staff and financial shortages, a reorganisation mess, a maternity care crisis, and a leadership crisis that has led to severe CQC criticism. 

Not surprising then that the leaders, clinical and executive, do not devote much time or thought to dementia.

They forget, of course, that at least 30% of their inpatients are affected by dementia, and that their length if stay is three to four times longer (and more expensive) that the other 70%.

They forget or ignore also that their poor care for inpatients affected by dementia causes awful suffering and deterioration, and in many cases shortens and ruins lives.

This Trust signed up to the local Dementia Action Alliance four years ago. But nothing flowed from it. No action.  No organisational commitment or engagement.

So I wrote to the Trust after Christmas asking the Board to explain what it was intending to do to improve dementia care. I said I wanted a formal reply from the Board, and that I would be happy to attend a Board meeting to hear this.

The (then) Director of Nursing passed the letter to my good friend, the dementia lead nurse, to draft a reply. This duly arrived a few days before the Board meeting I was going to attend, after I had reminded them that they had not written to me.

The Director of Nursing said that the Trust had just signed up to the Charter. My comments about lack of Tier 2 training were ignored, with the statement that all new staff received a dementia awareness session during their induction, and there is a short session in doctors’ annual training.

So I then checked the NDAA website.

Sure enough, they were listed, and an action plan was posted beside their name. Guess what. The action plan was the 2016 version of the local DAA sign up action plan, totally unrelated to the Charter. And not updated since 2016.

This is what led me down this road…investigating just what signing up to the Charter means.

Please understand…I think the contents and aspirations of the Charter are excellent. The new poster is also inspirational, and deliberately so. We designed it so that staff would understand what they should be providing, not just what visitors should expect.

I come from the school of hatred of tick box tactics. If a Trust signs up to the Charter, I believe they should have to have a firm action plan, signed off and supported at Board level. I believe that resource should be put behind it. 

My fear is that my Trust has signed up to get me off their back. At least in public.

I know that there is no Tier 2 training. Not even consistent Tier 1. Certainly not mandatory. 

I know the Trust has cancelled training of all sorts for many months.

I know that there is no Board level sponsor, other than the Director of Nursing. No non-exec sponsor to hold the execs to account.

I know there is no steering group with representation from all care groups and staff groups, and patients and carers. We tried that but could not get buy in or attendance.

I know that inpatients and their carers report very poor, in fact appalling, care experiences. 

I know that most staff and almost all doctors have no understanding of dementia, and how to provide appropriate, personalised care.

What, then, am I to make of the Dementia Friendly Hospital Charter?

Well, as Covey said, first start at the beginning.

And, as I keep saying, if you never start you can never finish.

So the Charter principles and model are great. And we should celebrate Trusts that sign up.

But let’s remember Dementia Friendly Community accreditation. It doesn’t say you are a dementia friendly community; it says you are taking the right steps towards becoming one.

When a Trust signs up to the Charter it is not even being accredited as “working towards” in any meaningful way. It is merely agreeing, or at worst one person is agreeing, that it supports the principles in the Charter.

There is no requirement for an action plan, as there is for organisations signing up to a DAA or a Dementia Friendly Community group.

There is no requirement to provide updates. And no one to provide them to.

There is no organisational ownership of the Charter process, apart from the almost unfunded NDAA and the volunteers who sit on the national steering group.

There are of course many hospitals that are working along Charter model principles to improve dementia care. And they are doing great work.

Which are they? How can I know? 

Do I look on the NDAA website to see if they are signed up?

Do I look at an up to date progress plan?

And, which is more, how do “we” hold Boards to account for the quality of dementia care?

Or, more accurately, WHO holds them to account?

Currently the CQC inspection model, whether or not you like it (pace Roy Lilley), does not report or assess the quality of dementia care.

But the good news is, as I was told this week, that the NDAA steering group is working closely with CQC to get the Charter model into the inspection process. Including reporting.

That, it seems, is the only way we can hold hospital Trusts to account, and lever improvement.

If this happens…wonderful. It will be a really great step forward. And then Trusts will have to take notice and act.

Of course it is a crying shame that a healthcare provider may only respond to threats. Sticks. 

You might imagine they would WANT to provide good, safe care to the 30% of their patients with dementia.

The Alzheimer’s Society has their very welcome campaign: Fix Dementia Care. But where are they? Why do they not resource the Charter process?

Who in a position of influence and power is actually taking responsibility to fix dementia care in hospitals?

The evidence is out there. Dementia care in hospitals is lousy. It takes lives, not saves them.

NHSE…you design the system…where are you?

Commissioners…you buy the services…where are you?

Yet again, it is left to little old you and me, volunteers in a broken system, people living with dementia, carers, to cry out in desperation.

Help us fix dementia care!

….

To finish, here are some of the comments made to the DAA survey last Autumn in Shropshire, Telford and Wrekin.

Q9 What would have made your experience in hospital better, regarding dementia?

Carer: Nothing. Although once the nurse knew mum had dementia she immediately assumed she had to ask me everything without talking to mum first.

Carer: Not all hospital staff understand about how dementia affects a person and seem to assume the patient is able to answer questions with the right information, and to carry out basic tasks.

Carer: D… did not seem to receive good care from the general nursing staff, but did when the dementia nurses got involved.

Carer: Addressing questions to the carer rather than the person suffering from dementia.

Plwd: PRH – very good. But they didn’t understand language difficulties. Language needed to be condensed. (Simplified?)

Carer: Experience of hospital outpatients has been pretty good and positive. RSH has a very positive outlook on dementia support.

Carer: At Gobowen the staff’s approach was ideal and sensitive.

Carer: Medical staff talking to a family member before leaving, rather than expecting the plwd to remember and understand.

It was a good experience for my mother. As I knew about John’s Campaign I enquired and was able to stay on the ward 24/7.

If they had looked at the This is Me information instead of putting it in a folder and forgetting about it.

The hospital thought she did not have dementia. I think notes should specify the condition.

Acknowledging mum as a person who has contributed to society and not writing her off because she has dementia.

Their understanding of the patient’s needs.

Again, more knowledge, understanding and acceptance.

Firstly, introduce yourself and find out abut my likes and dislikes.

Talk to me clearly. Don’t patronise me and treat me like a child.

Acknowledge that dad needed a little bit extra care and support…

Not leaving him wandering on a ward, distressed and unsure where his bed was.

Not ignoring dad when he repeatedly asked when he could go home.

The staff were extremely dismissive when I asked them how soon dad would be seen.

We were left sitting on a ward from 1am to 6am. When I told staff I needed to go home to see my mother, they were rude dismissive.

His bed space was changed, confusing him further, and he could not find his way to or from the toilet.

No consideration was given to dad’s needs as a person with Alzheimer’s, nor to me as an unsupported carer.

Nothing as we had full access at all times, including outside visiting hours.

Having my medication correctly administered.

Being talked to and listened to properly about my illness and what I wanted.

Being addressed by my name.

Having someone to speak and advocate for me and to get my needs and concerns addressed by staff.

Still in any doubt?

Mr Kipling’s general practice

In Shropshire last year the DAA carried out a survey of experiences of people living with dementia and their unpaid carers. The areas of greatest concern were experiences of care in general practice and in hospitals.

So Shropshire Telford and Wrekin Dementia Action Alliance is concentrating on GP practices this year to get them to become dementia friendly, or at least start.

Here are some dos and don’ts for practice staff. No doubt you can add more…

Don’t expect patients living with dementia to remember their appointment dates and times. Find ways of helping them.

Do use text reminders of appointments, but if you call us an hour before our appointment we are much more likely to arrive! A stitch in time…etc.

Don’t play music or radio in your waiting area. We need to concentrate on what we are about to say rather than be distracted by noise which is not loud enough to understand but too loud to ignore. Local radio is the worst.

Do use large, contrasty signage to help patients not be confused about where to go.

Do place name signs on doors, not walls, and at around 5 feet off the ground.

Don’t plaster your walls with posters and amateur artwork which will often confuse us.

Do provide information about local facilities, groups or services that we may like or need to use.

Don’t tell patient who is concerned about their memory or other functioning that since there is no cure there is no point in betting a dementia assessment.

Do use the Young Onset Dementia guidance to help you decide whether to refer a patient under 70 for assessment.

Don’t tell a patient that you keep losing your keys or forgetting names and it’s just a sign of ageing.

Do remember that the few drugs available to relieve symptoms often provide significant help, so it is important to get a diagnosis.

Don’t just get frustrated at the lack of support locally for us. Lobby your CCG to get action to improve this.

Do look and smile at us when you meet us and when you speak to us. 

Don’t stare at your computer screen while talking or listening to us.

Do make your entrance and waiting areas bright and welcoming. Use pastel colours. Provide soft and firm seating at a variety of heights. 

Don’t use dark or patterned floor coverings.

Don’t place a dark dirt catcher mat at the entrance.

Do make sure all staff are dementia friends.

Do require staff who regularly work with people living with dementia complete Level 2 training.

Do make sure every patient who is an unpaid carer is flagged on your system.

Do ask every time you meet a carer if they are ok, and be proactive about providing support.

Do put a contrasting colour seat on your patient toilet, and clear hot and cold signs on or above taps.

Do put an exit sign on the inside of the toilet door.

Do use pictogram signs for toilets and for nurse or doctor consultation rooms.

Do use colour or white to pick out doors that patients may use, but leave others the same colour as adjoining walls.

Do promote double sessions for people living with dementia so they have time to say what they need to say, and to reflect on discussions. So they don’t feel rushed.

Do tell your staff to smile at patients as they walk through waiting areas.  Say good morning. Smile. Put people at their ease.

Don’t march through looking as if you have just sucked on a lemon.

 

Do develop a model for sharing care and living planning with your patients. Co-produce it. All professionals contribute. Patient includes what matters to them. Patient has read and write access and can share it as they choose.

Do identify and support a dementia champion on your staff. Make sure they have the passion and understanding and support to make things happen.

Do use the approaches set out in ISPACE (search on line for this guide for general practice).

Do help patients living with dementia to take their medications correctly. Work with local pharmacies to use appropriate dose boxes or pods.

Don’t expect us to remember to re-order prescriptions correctly. Find ways to help us, like automatic re-ordering.

Do work with pharmacies to get them to ring patients who have not collected medications when expected.

You cannot do all this at once, but if you don’t start you will never finish.

And, as Kipling might have said, the world will be yours, and everything in it, what’s more, young man, you’ll be a dementia friendly practice.

Do you want our money?

What’s that noise? 

And what can pubs, restaurants and supermarkets do to get our money?

If you are living with dementia the way you process information changes. This is caused by the brain disease underlying your dementia.

There are several main types of dementia, with Alzheimer’s disease and vascular dementia accounting for around 85% of diagnoses. Two other, less common, forms are frontotemporal dementia and dementia with lewy bodies.

Within these disease groups every person’s symptoms will be different, unique to that person. That’s why we say ‘when you’ve met one person with dementia you’ve met one person with dementia’.

And it’s why we get so annoyed by the media-promoted image of a person with dementia being in their eighties, sitting in a chair, unable to communicate, staring into space, even with a dribble.

Any disease starts somewhere, and develops over time. If you have dementia you are somewhere on that continuum, with symptoms that can be trivial, or a bit annoying, or quite challenging, or downright disabling.

To complicate this further, we have good days and we have bad days. Even good hours and bad hours. We may know when one is coming, but often we don’t. When the fog descends, sometimes it is just a thick blanket that prevents us from thinking clearly, or indeed doing anything much. But it may also be like fireworks, like sparklers in your head. You can seethe and rage, or be unable to sit still. Or want to sweep everything off the table.

Everyone’s triggers for rage or explosion are different, but often include noise and visually complicated environments. 

Noise. It might be the clangs or bangs of cups and plates and cutlery on hard surfaces. It might be the hissing of coffee machines. Or it might be musack in the background which you cannot escape from.

Hyperacusis is the name for intolerance to everyday sounds that causes significant distress and affects a person’s day-to-day activities. There is considerable work going on to study the apparent link between the brain disease underlying dementia and hyperacusis.

As the definition states, hyperacusis can cause significant distress. 

Motorbikes. Empty lorries. Food trolleys with high, loose, mesh sides. Someone shouting close by. Lots of loud conversation in a small space, or a very echoey hall.

Why do these noises gradually swamp our brains? It’s not just because we are getting older and have come to enjoy peace and quiet! It’s because our brains are less able to process this data. It takes longer for the neuronal networks to connect, by-passing the tangles and plaques which are destroying our brains, and to find new routes to process the data, and to access memories.

If I hear a bang I have to work out what it is, and check that it is not a threat to me. That which used to be completely instant and automatic becomes a labour. And that is tiring. And disturbing.

If I am in a cafe and there are a few conversations going on around me, and the coffee machine is hissing and clanking, with the grinder grinding, and the barista banging the used coffee grounds out of the metal holder, what am I listening to? I have got to filter out all those noises I don’t want to listen to. In order to hear the person speaking to me. Or to formulate my words and sentences. Or just to think quietly inside my head.

That is why I avoid noisy places. Noisy cafes and pubs. Noisy restaurants.  

And that is why a dementia friendly environment is quiet. Well sound deadened. With as little echo and reverberation as possible.

Without background music or local radio. My local GP surgery plays the radio so that conversations at reception cannot be listened to. And possibly because they think it keeps waiting patients relaxed. There is nothing more annoying than the constant rattle of radio presenter wittering just too quietly to be understood. Or songs that you really don’t want to hear. They all use up your reduced cognitive reserve, so that you may not be able to think about what you are going to say to the doctor.

What can pubs and restaurants do to help us? To get our custom? To be a place we enjoy going and spending our money.

Have a quiet area. Labelled quiet area. Away from the bar or the cooking area, which is increasingly open and on show nowadays.

Have walls between different areas, so noise does not carry so easily across the whole space.

Locate the coffee machine away from the public area. Get a quieter one? Serve filter coffee.

Turn the music off. At least in the quiet area. 

Food chain outlets: Train your staff that shouting is not good for business. Plates and dishes can be placed quietly on tables and serving areas.

If your premises are noisy and echoey, use carpet here and there to absorb noise, or wall coverings.

Supermarkets: turn off the music. Keep your announcements to an absolute minimum. Again, at least during quiet shopping sessions. Half a day a week? Could be a real attraction to us. 

What else can you do?

Put some chairs out during quiet shopping sessions.

Get your staff to become dementia friends.

Get rid of those black door mats at the entrance. They look like big holes to some of us.

Reduce notice clutter. Less is more.

Make labels and signage really contrasty, and don’t use all capitals lettering.

Shops can lighten their premises. Nice and light and bright, if you want us to come in.

And turn that music off.

Make sure any steps are really well picked out with bright edging, and in light coloured covering if possible.

Hotels: avoid highly patterned carpets. And mirrors. Keep lifts simple, with large, well-lit control buttons, and without mirrors.

Latest hotel refurbishments seem to go for darkness and mirrors, glitter, reflections. Everything we cannot cope with. We just cannot process all the changes and shapes, and work out what is real and what might be a wall or a hole. 

If you do this we will not visit you. 

You will not get our money.

Dementia Bereavement

When I was given my diagnosis, by three professionals who each answered their mobile phones during our meeting, I came out and had no one to talk to, nowhere to sit and have a cup of tea, quietly, before driving home.

A diagnosis is a bereavement. 

For the person with dementia it seems like a death sentence. It is the loss of your future. It is terminal. It is a void.

For the spouse, partner or family, it is a bereavement too. The loss of their spouse or parent. The loss of a future together. The loss of a retirement together, after a lifetime of working.

And it is hopeless. There is no cure. There is no stopping the disease causing the dementia.

It is frightening. It can look like the end of life as we knew it. 

It is also what many people regard as the most frightening disease of all. More so than cancer now. And probably the most misunderstood disease.

So what would I have valued? Someone with the disease to talk to. Either when walking out of the consultation, or whenever it felt right in the next weeks.

To hear that actually life goes on just the same. That you mustn’t stop doing what you enjoy. That you should continue to take all the same risks you did before diagnosis.

And to meet other people with the diagnosis at the same stage. 

I now know how important and valuable it is to sit down with people with dementia at the same-ish stage.

…

The days and weeks pass and many people don’t know how to feel.

If you are in a positive mood you may think it is good to know what has been causing these small but growing difficulties.

If you’re feeling down you may think you don’t want anyone to know. You don’t want to meet people, because they will think you are stupid, or mentally ill, because you can’t finish a sentence or keep up with them. And you are ashamed that you are no longer normal and able.

You may find that friends and family no longer visit. They don’t know what to say. They don’t understand the disease. They might even think they could catch it off you.

They want to remember you how you used to be, so they stay away. They actually say that.

They imagine you can’t talk or do things any longer because you have this awful, frightening disease. They can’t stand the thought of long silences, and embarrassing forgetfulness.

So how does this make you feel? When no one actually wants to listen to how you feel.

When you live with dementia you think about it all the time. You question everything you do or say.

Why? Because every trip or mistake or lost word is a reminder that things no longer happen automatically. And if you don’t pause and prepare before you do something you may well do it wrong. Or forget to do it.

And every day you question whether you have got worse. 

It’s not a morbid introspection. People say that their loved ones who live with the brain disease become self obsessed. They become less able to think of others’ feelings and needs.

That’s because you are continually examining your actions and your memories and your words, to find the right ones, or to avoid mistakes.

So I think we end up living two lives. 

One is our inner self, the one with dementia, who feels lost at times, fogged, unable now and then to do things we used to without thinking. And this inner self has feelings and reflections which you cannot share because people don’t want to hear. So you feel lonely, and you withdraw further.

The second life is the outward facing self, the one who bravely gets on with a smile, because that’s what others want to see. This self is a denial. It is living behind a mask.

And this is why we value peer support groups so much. Because the only people who understand us are people living with dementia. We can open up our inner selves. Reveal our anxieties and doubts. We can know that others feel them too. And we can laugh at our mistakes, at getting stuck in a sentence, or just cursing the world.

Peer groups enable us to get rid of some of our accumulated emotion and introspection so we can look out at the world again and engage with others and do things.

We are, after all, the same person as before the diagnosis. We have probably been incubating our brain disease for over twenty years, and have been aware of slight symptoms for several years. The diagnosis does not change us. It may give us some palliative treatment that eases the effects, and it may enable us to get some support when we need it.

But we are the same person. The same things give us joy and make us smile. We like the same food and drink. We can make choices just as we could a year earlier. For better or for worse, they are our choices and we must be allowed to continue to make them.

As the disease progresses we will indeed suffer at times. We will suffer knowing that we can no longer do or say what we used to. We will need some help now and then. 

But we are still inside, so you need to make the effort to reach into our minds and our memories and meet us where we find ourselves. It may not be the world you know, but please just come with us. 

Don’t tell us we are wrong. Or we shouldn’t do or say this or that. Just come with us into our reality as we recede from yours.

The end is far off; the disease usually takes many years to debilitate us. Help us to do what makes us smile while we can, rather than slinking off into a dark corner to be forgotten. There are times for all of us when things get too much and the fog descends. 

Don’t ignore us when that happens. Just reach out and hold our hand and listen.

 

 

Fake news: lies, damned lies, and statistics

“Start with the patient and work backwards.”

Roy Lilley’s signature phrase at the moment. And rightly so.

Ccg? Acute trust? Mental health trust?

They all start with themselves and do what is easiest for them.

They take the path of least resistance … for their own organisation.

They sit behind walls and look for the simplest to implement. The cheapest. The ones which require least effort and change.

I am really sorry to have to write this. I know there are exceptions. I know there are some organisations that really try hard. They innovate. They change to meet patients’ needs.

They start from the patient and work backwards.

….

Here are some examples of what happens round here.

Four peer support groups for young onset dementia and for carers are closing. 

The trust says they were run voluntarily by their staff, who are soon retiring. 

The trust says this is after a review.

The trust says there is no longer a need for specific groups for young onset. 

The trust says there are now sufficient other opportunities for those attending to find similar support elsewhere. 

The trust says they have consulted with those attending these groups.

The trust says that only cognitive stimulation therapy courses show any evidence for clinical improvement. 

They are also going to merge the (tiny) young onset service into a single age service, following a review.

They are now providing really valuable home crisis support teams. (Note, crisis. Not before crisis happens!)

They say (seemingly proudly) they have even provided a few beds in their mental health hospital for patients with dementia. (Having closed a dementia ward recently.)

So, where does that leave us?

Well, the group participants were told the groups would close. Then at another meeting someone attended and asked how they felt about this. They told her. The groups were the only support they got. They loved them. They hugely benefitted from talking to peers with dementia. One person was in tears. Nowhere else did they get that sense of trust, that honesty, and that understanding.

The trust says the groups are going to close.

The trust says that there are sufficient other support groups for young onset dementia that their own groups are not needed. There is just one, the DEEP group in Shrewsbury, attended by sevenm of whom just two go to the closing group.

There are 6,500 people living with dementia in Telford and Shropshire. So around 250 aged under 65. 

The evidence for cognitive stimulation therapy, referred to bu the trust, actually shows little change in cognitive ability, but big improvements in social confidence and wellbeing. Just what peer groups provide.

Research around the efficacy of peer support groups for plwds has produced evidence of increased wellbeing, confidence, social engagement, sense of self worth. They allow plwds to re-narrate their lives in their new circumstances post diagnosis. (And positive social return on investment: SROI.)

Subjective comments (from research and from anecdote) show that peer groups, especially when run by plwds for plwds, or by carers for carers, are the most valued and valuable opportunities people can have.

There are no other peer group opportunities for plwds other than dementia cafes and the like attended generally by a few plwds further on and less able to communicate and less independent. These are not groups younger onset people want to go.

Yes, we have a DEEP group project starting now in Shropshire. It’s funded by a national CIC not a local ccg or provider.

There has been no consultation over the change of dementia service to all age. We who live with dementia have not been involved, asked, even informed. We think we will lose the expertise that the one remaining under 65 service nurse has. 

This is disgracefully lazy and selfish.

They treat us with contempt.

They do what they want. What suits them.

They ignore the research evidence which doesn’t suit them.

…

I got a letter from the Council and CCG the other day, in response to my question to the Health and Wellbeing board about the lack of a dementia commissioning lead (for the last 18 months and the next 12) and the non implementation of our co-produced dementia strategy.

CCG improvement and assessment 2018/19

It told me that Shropshire CCG had last year been assessed in the top rating for quality of dementia care under the Improvement and Assessment Framework. The only two measures relating to dementia are diagnosis rate and care planning/post diagnostic care.

So we have a diagnosis rate of 67%. Yup. Good.

And apparently 90%+ of plwds have care plans.

Eh, what?

No we don’t. That is not true. That is calling an EMIS summary care record a care plan. The framework requires an annual face to face review re dementia, recording the patient’s wishes for the future, the name if their carer(s), and communication and coordination arrangements for secondary care. 

Are QOF codes being ticked when they shouldn’t be? Or is the whole recording of care plans a fake? 

And for God’s sake, how does this mythical care plan equate to post diagnostic support?

This is pure gaming in a system which is based on numbers, not quality, and certainly not What Matters To Us.

So don’t start quoting how great you are. It’s just emperor’s clothes again. Post diagnostic support? There isn’t any.

….

These commissioners and providers still act as Gods who believe they know what we need and decide what we can have.

It is appalling that they can ignore national models of good practice. Ignore the people who have the disease. Ignore research evidence. 

We have a disease that cannot be cured, or even slowed. The only thing that you can do for us is help us to live well while we can, to not withdraw, to be able to engage in our communities, and to do what makes us smile.

That saves you money. It makes society a better place. 

And yet too many of you remain behind your walls and take the easy way out.

Start with the patient and work backwards.

(Thanks Roy)