Day to Day Dementia in Shropshire and Telford

In late 2018 I carried out a survey of the day to day experiences of people affected by dementia in Shropshire, Telford and Wrekin, on behalf of the Dementia Action Alliance. The main purpose was to find out what people living in this area wanted us to focus our work on in the next couple of years.

What matters to them.

As far as I know this sort of consultation has not been carried out before here. 

No one has thought to ask what we people affected by dementia think, how we experience day to day things. Even Dementia Action Alliances and similar groups often don’t include people living with dementia, which is entirely missing the point.

Don’t assume we cannot take part. It makes an ass of you. Involve us.

You can read the report of the survey findings here (copy into your browser):

https://drive.google.com/file/d/1FZrzKCmWYD-92JLMY1ZFxveI-I2wVDea/view?usp=drivesdk

……..

30 people completed forms, on paper and online. 13 were people living with dementia; 17 were care givers. 

Not a huge response but significantly consistent findings.

There are, apparently, over 6,500 people in the Shropshire Telford and Wrekin Dementia Action Alliance area living with dementia. That means probably as many care givers, given that some plwds will have more than one family member or friend helping.

I sent copies to local branches of Age Uk and Alzheimer’s Society, and to the Memory Service. I tweeted the survey monkey link numerous times.

But we only got 30 out of 13,000. Sad, but still it is a start, and it is usable, if not statistically robust.

But a big question I have is this: 

How can we reach these people? 

How can we contact them, inform them, create supportive networks?

These 6,500 have brain disease, yet they are not connected to any support network. 

There ought to be a way of collating all those with a diagnosis into a single database for emailing, or paper mailing.

There ought to be a service dedicated to keeping them informed of local activities, newsletters, local groups.

That service could provide two way communication and networking.

Anyone starting a support group, like DEEP, could have the details sent to anyone on the list in the appropriate area.

Care givers could all receive information about services and benefits and support available…in one place.

The data is in GP records. Carers should be flagged on systems, as well as people living with dementia. So it is all there.

But where there is no will, there is no way.

Anyway…

 

This survey shows that key difficulties or priorities for people affected by dementia are:

GP practices are not dementia friendly

Making medical appointments is challenging

Poor, inappropriate care in hospital

Lack of understanding of dementia by NHS staff

Lack of consistent and complete information about support and benefits, easily accessible and in one place

Lack of support for care givers to maintain their own health and individual lives

The need for inclusive social activities and groups that are “dementia friendly”

Supermarkets came fairly high up the priorities for action too, and it is heartening that in recent months several supermarkets have begun to work to become more welcoming of people living with dementia.

So we know what to focus on this year.

Every GP practice should become dementia friendly.

Health care staff training needs to be improved hugely.

Hospitals should sign up to and implement the Dementia Friendly Hospital Charter.

Information and access to support and benefits for care givers need to be improved hugely.

We need to continue to create Dementia Friends, and to promote understanding of how to make activities and groups accessible for people living with dementia.

And we need to develop relationships with supermarkets to help them become dementia friendly.

That’s quite a list. But it is all achievable, with commitment, strength, and determination. 

We will need to use different approaches. 

Softly softly, touchy feely, for some.

Shout from the rooftops for others.

But just never give up. Keep pushing at the doors till they open. 

Shame those who should know and should be doing better.

Support those who need understanding.

As 2019 begins…let’s remind ourselves.

We are not alone in our work. And we need each other to make this work.

Thank you, everyone who has given their time and effort to make Shropshire, Telford and Wrekin a better place for people affected by dementia.

Onwards, and upwards.

Dementia: a solution

I’ve been talking to people lately about models of support and care for people affected by dementia.

Living with dementia and providing unpaid care.

Medical model?

Social model?

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What do we usually have? The medical model.

Diagnosis. Medication. Risk assessment (!). Six monthly reviews. Crisis management.

What do we usually not have? The social model.

Living as well as we choose after diagnosis.

Making choices that give us pleasure, healthy or not.

What do we all have a right to? 

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A family life, a happy life that we choose, self-determination.

So why do people living with and providing unpaid care for dementia rarely get these?

Dementia is the result of brain disease. We all know this. 

It is painless (usually, depending on your definition of pain).

It is invisible, incurable.

You can ignore it without a guilty conscience.

You can pretend it doesn’t matter.

You can say we can’t do anything about it.

You can say it’s not worth getting a diagnosis (as a nearby GP does).

Because…well, you can’t see it, can you.

After all, we stay at home. We don’t walk beside you in shops and sit beside you on trains. We withdraw. 

We are the living dead. The unknown. The hidden relative.

Better still, not a relative, just someone you don’t need to see. Or talk to. 

I suggest we hold a referendum. Let’s just get over this. Make a decision.

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We know that dementia/brain disease exists. But wouldn’t it be so much easier if it didn’t?

And if you don’t have a word for it it doesn’t exist. You cannot have a thought, or a conversation, about something which you cannot name. 

So, let’s just ask the people of they would like to abolish dementia.

It’s really very easy. Just remove the word. 

Of course, then we could go back to lunatic, or mad, or disturbed. Of unsound mind.

But we could get rid of all this horrid arguing over support and care. 

We could just simply get on with our lives. Get on with researching cures for cancer and arthritis and all the rest of the visible, painful diseases.

The government should quite simply build facilities for supported living, so that people who (don’t) live with a debilitating condition (that is not dementia), can be housed away from the public eye.

Let’s face it, this would be a wonderfully refreshing change for everyone. We could release all the voluntary energy currently wasted on dementia friendly communities, and re-direct it to more worthwhile causes. Like keeping roads litter free, and running libraries.

We could also find similar accommodation for those who use food banks because they have failed to work long enough hours to feed and feed and heat their families. Provide them with the relief they so crave. 

Now, that’s true compassion.

So, CCGs and Councils, please make some radical decisions. 

I know this does not come easily to you. You breathe not oxygen but procrastination.

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You thrive on uncertainty, equivocation, delay.

But instead of worrying about making decisions about funding…well, just delete dementia, and hunger and poverty.

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Job done.

Thank you.

The story of a cock and a bull

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Walking Lupin through the woods the other day, squelching and sliding through mud and drifts of leaves, I fell to thinking about Tristram Shandy, a great 18th century novel by Laurence Sterne. Biting satire and wit. I loved it as a student, along with Swift’s “Modest Proposal” to deal with child poverty and hunger. (Eat the children!)

These pieces of writing have inspired my writing and perhaps my values all my adult life. I see irony and metaphor everywhere. I can’t take serious people seriously. 

When I left one teaching job I read a paragraph about a cock and a horse from Tristram Shandy. I regret that now, but at the time I was so fed up with certain staff that it just made sense. But it was not a sensible or honourable way to behave. 

“cock-and-bull story noun [ C ]

UK /ˌkɒk.ən.bʊl ˈstɔː.ri/ US /ˌkɑːk.ən.bʊl ˈstɔːr.i/ informaldisapproving

 

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I have only left one job in my life which I truly was sad to give up. And it was a decision I regretted for a year, until a really great opportunity came along…as a result. But every other place of work has become a place of frustration, anger and impotence, because I could not change behaviours and systems to what I believed was right. And better.

Where am I going with this? 

To my dearly beloved Shropshire Clinical Commissioning Group, or any other commissioner of health or social care, that refuses to implement meaningful, personalised support for people living with dementia to enable them to live as they choose, and as well as they can.

No, I’m not employed by the CCG, or anyone else, so I have no contractual influence on decisions.

Yes, I am one of 320,000 people living in Shropshire.

No, there is no strong reason why the CCG should listen to me more sympathetically than to anyone else.

Yes, the CCG does have a responsibility to provide evidence based health care to their population.

No, the CCG and the Council do not have enough funding.

And yet, and yet…

Yes, there are 3,700 people living with dementia in Shropshire, and

No, there is next to no commissioned support for people affected by dementia until a crisis happens, and 

Yes, providing a social model of support after diagnosis for the years that follow would save at least three times the cost.

Yes…there is evidence.

Yes, we would have fewer hospital admissions, fewer GP visits, later transfers to care homes, fewer care givers collapsing.

But no, these commissioners, whom we pay to act for us, refuse to listen.

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They have closed their doors and curtains so they don’t have to meet us, and listen to us.

They no longer come to our meetings.

They take months to reply to formal letters, and only then after our MP has asked twice.

When they do answer, their letter is full of grand sounding, jargonistic hot air, statements that imply they work to support us, explaining what they are going to do soon…

(And then another email comes through saying they have to postpone a meeting or an appointment.)

They say they will evaluate a dementia navigator pilot after it finishes. Not before, after. That means that regardless of the evaluation over 100 people will lose the support the navigators provide. The two navigators will lose their jobs. And the evaluation will likely take six to nine months. Probably too late for the subsequent commissioning cycle.

So two years before a navigator might start again. Lost expertise and knowledge.

We have had no dementia commissioning manager for eighteen months. So no one is dedicating any time to the needs of 3,500 people living with dementia, and their 2,000+ care givers.

Shame on you.

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Shame on your denials and excuses.

Shame on your hiding behind doors and blaming others.

What have we tried?

Meeting the Chair and Director of Strategy.

Taking a DEEP group to meet them.

Writing letters.

Attending meetings.

Involving our MP.

Social, radio and print media.

But these are not enough. We need more noise.

We need lots of noise. 

Disruption.

A bit less Mr Nice Guy.

God knows, I have tried to be well behaved. I have been polite. Calm. 

Facts, stories, experiences…

Nah. They ain’t listening.

So…it’s time to shout a bit.

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