In May 2012, I thought it would be a good idea to collect and publish some ‘in my shoes’ guest blogs for Dementia Awareness Week. I started it with my own story and then collected all sorts of stories from other people. Like a lot of the stuff I do, I had no idea what I was starting: it ran every day for weeks! There have now been about 150 guest blogs on all sorts of topics, over 100 specific to sharing ideas, good practice or challenges around dementia care and support. The thing they have in common is that they are written by passionate people who have something important to share.
And now it is Dementia Awareness week, 2015. Once again dementia is particularly ‘topical’ – last week I was honoured to be asked to take part in a lively discussion session hosted by the Guardian about ‘integration’. In my days as a family carer for my Mum living with dementia, it was all too easy to fall down the cracks!
As someone who likes things to happen pretty fast, rather than debates that go round endlessly in circles, I sometimes ask myself how much is really changing as these various awareness weeks, conferences and discussion panels come and go.
And then I hear stories that make me feel optimistic, and these are the ones I try to share.
Last month I was a speaker at the ‘Dementia: Quality of Care’ conference’ in Manchester and it was a really interesting line up: a mix of people I know well and people who were new to me. My session was in the afternoon but two stories jumped out at me from the morning presentations.
The first was an update from my friend Suzy Webster, who cares for her Mum living with dementia in a three-generation family household. Suzy is a regular speaker at dementia conferences and one of my absolute favourites: always nervous beforehand wondering exactly what she will say and then always ‘spot on’ because she has a compelling story which she tells from the heart.
Suzy has been a regular contributor to my blog series and also that of her great friend, fellow dementia challenger Sarah Reed. Suzy spoke about her Mum’s impending cataract operation and how she wanted to be there to support her but at the time it was looking as though she would be refused.
Thanks to some extra ‘encouragement’ from people on Twitter, her health board agreed and it makes a very uplifting story, with lots of important learning, told here on Sarah Reed’s fab ‘Age Page’.
The second story is the one which I am delighted to publish here to coincide with the launch today of a wonderful new dementia facility in Warrington: the Forget Me Not unit. I heard about this when Mel Pickup, CEO of Warrington and Halton NHS Foundation Trust, who was also a speaker at the event, gave a wonderful content-rich presentation.
I was particularly taken with the story of Twiddle Muffs (read on!) – such a simple and engaging idea and it looks as though my Mum and her some of her W.I. friends will soon be knitting a few!
So here is Mel’s story.
I hope you enjoy it as much as I did.
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The Rise of the humble Twiddle Muff
Mel Pickup
I’ve observed that, a lot of people who become interested in dementia care, do so because they have had a distinctly personal experience of may be a friend, a loved one, partner, parent, someone close to them having been diagnosed and suffering from the effects of dementia. Often it seems that the personal anguish of seeing that ‘significant other’ change over time, as they succumb to the disease and ultimately become lost to them motivates people to do something, indeed, anything. If they can’t halt the disease, or reverse its effects then they look to do something in the present and for the future, something just to make the lot of that person and thousands like them, just a little bit better.
I have to be honest and say that in the beginning that’s not how it was for me, although ironically it would become so a short time later, when my partner’s mum was diagnosed with Alzheimer’s disease. So where did it all begin? Well it all began with one of these…
This is what we call a Twiddle Muff. There are as many varieties of this as you can care to imagine, similar but different, knitted tubes that become a haven for restless hands, adorned with lots of things to, well, twiddle with. Velcro, baubles, bells beads and buttons, ribbons, zips, different textures, colours all designed to amuse, give focus, provide comfort to a mind that probably would rather be anywhere other than where it actually is.
My Director of Nursing, Karen Dawber brought a Twiddle Muff into my office about two years ago, explaining its role in helping to calm those elderly patients on some of our acute medical and surgical wards who were suffering from delirium. So the age of the Twiddle Muff began. Karen had come across a picture of one when she was searching the internet for jigsaws for our elderly patients. The trouble was to buy them commercially was prohibitively expensive so Karen engaged the services of her mother, an avid and adept knitter who not only was able from just looking at the picture knit one in no time at all, she also wrote a pattern for others to follow.
Knitters everywhere rose to the challenge, a veritable army of knitting nanas, volunteers, our public governors, league of friends all joined the cause. Some knitters weren’t keen on putting on the twiddly bits, so they just knitted, conversely those who weren’t that good at knitting but wanted to help did so further down the production process attaching the bells, ribbons, etc. The knitters were busy doing what they did best and the twiddlers, well, you get the idea.
So all this got us thinking. We are an acute hospital, a standard District General Hospital that does, what you might expect a standard District General Hospital to do. We provide secondary care to our population of about 320,000 and like most similar organisations, the majority of our patients are elderly. Increasingly a number of these patients are suffering from some form of cognitive impairment. We were dutifully conducting our Dementia assessments to identify those patients with cognitive problems, and those that were in need were referred to specialist Dementia services provided by our local Mental Health provider, but that didn’t hep in addressing the immediate needs of those patients. They still needed to be in our care for inpatient treatment; maybe they had fallen and had a fractured hip that needed surgery and then rehabilitation to help them walk again, maybe they were suffering from an exacerbation of a long term medical condition, often more than one. So how were we doing as an organisation in catering for not just the physical needs of these patients, not just in providing them with the right treatment to address their acute problems but when we found that they also had cognitive problems, disorientation, loss of memory, confusion, anxiety, what did we do to address these specific needs?
Our staff are caring and compassionate; they always do the best they can but a general medical or surgical ward is a busy and frenetic environment. It is fast paced with a quick turnover of patients and is about as far from conducive to meeting the needs of vulnerable, elderly patients suffering amongst other things, dementia than its possible to be. An unfamiliar, somewhat chaotic and rather unwelcoming environment for those whose cognitive functioning is impaired and one which leaves them wondering why they are there, and not in the familiar surroundings of their own home. We were doing ok, but OK just wasn’t good enough.
Enter Stage left ‘Opportunity’ in the shape of the Department of Health Dementia Environment Fund. An amount of capital monies, ring fenced nationally to be bid for by organisations who wished to improve their care environments for patients with dementia. Perfect.
The Twiddle Muff had created a groundswell of interest across the organisation and staff in wards and departments were undertaking their dementia awareness training, conducting screening assessments and trying to go the extra mile within the limitations of an imperfect environment to better meet the needs of dementia patients.
One nurse’s husband who was a carpenter made an activity board and box and a calendar for the orthopaedic ward where many of their patients were elderly.
Wouldn’t it be great we thought if we were able to have a special, purposely configured ward for our most vulnerable patients, designed and decorated entirely with the purpose of making them more relaxed, less scared, anxious; one where relatives could visit, social activities could be undertaken, where those who were disorientated would have less chance of getting lost as there would be helpful, bold and easy to understand signage, a bright, colourful unit de-cluttered and de-hospitalised. An oasis of calm in an otherwise busy, busy hospital.
Led by one of our Assistant General Managers in Care of the Elderly, Lisa Hulme and with estates Lead Lee Bushell, we constructed a compelling bid that secured almost £1m to create our Forget Me Not Unit and make our aspirations about delivering Excellent Dementia care a reality.
Checkout some of our before and after photos…
Giving our dementia patients and their carers the best possible experience whilst they are in our hospitals has been enhanced immeasurably by our creation of the Forget Me Not Unit but its not just about the new environment, great though it is. Its a wholesale change in the way care is delivered there and socialising and activities play a large part.
Whether its a string quartet, a ukulele band, a rock choir, or our activities co-ordinator prompting discussions using the memory ball or getting patients to draw and paint. Even better when the weather allows perhaps sitting in the beautiful garden or maybe even watering the plants.
Hospitals can be daunting, impersonal and unwelcoming places, scary even. Thanks to the humble twiddle muff, where the story began, the desire of our staff, the passion and imagination of our bid team, the support of our Board (all trained Dementia Friends by the way) the vision of our Clinical Lead Dr Graham Barton and the continued commitment of our dedicated clinical team on the FGN Unit, Warrington and Halton Hospitals starts this weeks Dementia Awareness week with the official opening of the Forget Me Not Unit.
We are delighted to welcome Actress Sally Lindsey to mark this fantastic milestone in our Dementia Journey and one year on celebrate with partners, friends and patients and their families who helped make it happen.
Whose Shoes? A catalyst for change in health and social care 
Great stories, and thanks for the link to the pattern for twiddle muffs, really quite easy to make. My mother in law is in the latter stages of dementia now and in a nursing home but this could still be a useful aid at times. My mother suddenly became ill last Christmas and is presently having memory clinic tests, which is frightening in one way but helpful to know that some of the aids and support we have utilised in the past for my mother in law will be useful for my mother in time.
It would be good to share helpful hints!
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Thank you Pam – and please take a look at dementiachallengers.com. It is wonderful. The site was set up by a friend of mine who cares for her Mum who is living with dementia. It is full of really practical tips, by carers for carers. Do please let us know if you find it useful and how it helps you. Gill x
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