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.

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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.

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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?