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The new electronic tool Whose Shoes?®-Making It Real is now available from our website.
We celebrate a year of the amazing #dementiachallengers – my friends. Together we are making a difference! :)
A happy story today! A story that shows the wonderful outcomes that can be achieved through simple person-centred approaches 
Regular readers of the “in my shoes” series will remember the heart-warming story of Winifred, told by Gill Bailey, from Helen Sanderson Associates. In direct response to a challenge from David Behan, the Department of Health’s Director General for Social Care, Gill and colleagues proved that it is possible for residential care homes to improve the experiences of residents living with dementia, including through the use of personalised ‘one page profiles’.
As you will know, I love anything that is simple and effective. I love things that put human values such as love and compassion centre-stage ahead of rigid processes and endless “stuff”. Here it is brilliant that the changes involve both residents and staff, and recognise their choices and relationships and, in consequence, enhance quality of life for all. I smiled when I spotted some new pictures of Winifred happily folding laundry and I invited Gill to give us an update…
Winifred lives at Bruce Lodge in Stockport where we are introducing Individual service funds for the 44 people who are living there, so we are learning with them about just how far we can go in personalising care homes supporting people living with dementia.
We are trying to work at two levels. Firstly, that people living with dementia direct their own support on a day to day basis. We therefore need to know what matters to each person (what is important to them) and what good support looks like. We record this as a one-page profile.
Secondly people have an upfront resource allocation that they can determine how it is used. Each person will have 2 hours of individual one-to-one staff time each month that they can spend however they want, doing something that is important to them, where they want (in home or community) and choose who they want to support them.
Winifred can be heard singing and laughing as she helps clean up in the home. Despite always being warm, generous and loving, Winifred, was not always this satisfied and relaxed in her new home. Until she developed a ‘One Page Profile’ with dramatic effects.
‘One Page Profiles’ were introduced for both staff and people who live at Bruce Lodge to achieve two things. For staff, it enabled a greater understanding of each other and meant that each week team members spent time away from their day to day activities to do something that they personally felt was an important part of their role. For people living with dementia, the ‘One Page Profiles’ acted as a job description, allowing them to direct their own support and ensuring that the people providing the support understood what was important to them.
All staff at Bruce Lodge, including housekeepers and maintenance staff, produced their own profiles. This exercise allowed the people living with dementia to be matched well with the staff team and choose who they wanted to spend extra time with based on their interests and what was important to them. Winifred chose to spend her time with Beryl the housekeeper because she said she enjoyed helping out with the daily chores such as polishing, sweeping and mopping. Winifred’s two daughters and staff at Bruce Lodge helped uncover this by sitting down with her and chatting over tea and biscuits to inform the ‘One Page Profile’. They asked about good days and bad days, past and present. What was going well and what needed to change. What Winifred had enjoyed in her life in the past, and what she would do, if she could, in the future.
Winifred’s new relationship with Beryl and extra responsibility has had an extraordinary effect on her happiness and wellbeing. At home she would routinely clean the house, so before this was identified in the ‘One Page Profile’ as being important to her, a big part of her life and identity had been missing.
Maureen and Bernie, Winifred’s daughters, have noticed the change that the ‘One Page Profile’ has made to Winifred. She is happier, chatting more, using fuller sentences, sleeping better and is generally ‘’more alive’’. Maureen goes on to say; “The difference is astounding; mum was a housewife, a practical person who spent her life caring for her five children and our father, who died 20 years ago. Her desire to care for people was never blunted but the ability to do so was robbed from her and that left her very frustrated. These chores are helping her connect with other things from her past and are opening up new pathways in her mind. The first thing that we noticed had come back was her language – within a week of working with Beryl she was recalling words much better and introducing me to other people by name, whereas before she didn’t know who I was.”
Winifred now has enhanced choice and control over how she lives her life and how she is supported on a day to day basis. Winifred can often be found well into the evening, long after the housekeeper has gone home, sitting and folding the laundry – the photo here was taken late one evening as I was leaving Bruce Lodge - this has simply become the way she chooses to spend her time and the impact this has had on her happiness is evident for all to see. Not only is her smile lighting up her own room but she can be seen beaming all over the home as she reconnects with what she loves most; helping to look after others and bring joy to the people she lives with. Nothing makes her grin more broadly than pegging the washing out on the line on a fine breezy day – it doesn’t cost time or money its simply about knowing & acting on it – this gives Winifred meaning in her life – the team have created an environment that says there are plenty of jobs to do, the clean laundry is left in the basket & Winifred folds it. The wet washing is put in the same place each day & Winifred will spend hours hanging it outside or putting it over the maidens.
So we are supporting a normal way of living your life, which may give somebody a reason for being alive, which gets us moving away from those care plan boxes that often focus on a person’s physical needs without paying good attention to learning what matters to people – our quality of life is determined by the presence or the absence of those things that matter to us, those things which are important to us.
Gill Bailey May 2013
When Betty, my Mum-in-law, was in hospital – sadly for the last few months of her life – it would have made a huge difference if there had been a discreet butterfly symbol at the top of her bed. Not the butterfly symbol itself of course. Symbols mean nothing. What I mean is the full meaning of the fabulous Butterfly Scheme. A discreet way of identifying people living with dementia and ensuring that well trained staff know that this person needs a little more attention, a little more understanding. A little more delving to find out how the person is feeling. Quite probably, frightened, bewildered and totally disorientated.
In the later stages in particular, people with dementia can be desperately confused by being in hospital. A vicious spiral is set up and decline can be very rapid – I wish with all my heart that we could have avoided this fate for Betty but she had broken her coccyx. The apparently innocuous fall (she told us at the time she just ‘sat down’) occurred while Betty was walking back from the shops – ironically struggling with a trolley full of shopping she didn’t need but bought every week due to her OCD.
But that’s another story.
In one particularly windowless, grim hospital ward, Betty was convinced she was in ‘the basement.’ Only ‘logic’ told me that her reality was ‘wrong.’ The Butterfly Scheme helps a person who can perhaps no longer express their feelings and desires but who nonetheless has these feelings and desires. Just like any human being…
This is a particularly fitting time to feature a guest blog from Barbara Hodkinson, Founder of the Butterfly Scheme, as part of Dementia Awareness Week and as the 100th hospital takes up the scheme! Congratulations Barbara!
Looking forward to launch at Ysbyty Glan Clywd today – the 100th Butterfly Scheme hospital! #dementiachallengers—
Barbara Hodkinson (@ButterflyScheme) May 15, 2013
Here, in Part 1 of her blog, Barbara tells us more…
Fifteen years ago, my mother received a dementia diagnosis and I became her carer. She moved from seventy miles away to live in a flat next to me and we settled into this new way of life. At that stage, I was a busy mum of girls aged nine and seven, teaching German part-time and always on the go. Mum was soon happy; it all seemed relatively simple.
When Mum – still that same, loving mum and grandma – died of dementia two years ago, she’d been in a care home, two minutes away, for over three years. When was the moment, during the thirteen years since diagnosis, that it became untenable to continue at home? Ah – now that’s a question I’ll never be able to answer.
For me, like so many thousands of carers, the changes had come along so gradually that they were rarely noticed. The first time something new happens, it’s dealt with as a one-off, then it happens again, then again, and it becomes accepted as part of the new normality; the straws keep being added to the camel’s back and the camel copes. The carer learns so many new skills along the way – so many insights, so many techniques – but often doesn’t realise how enormous that skills-base has become.
Life was good. That’s to say, I was determined that Mum’s life would be good. In her home setting, and at the brilliant, zingy, make-you-feel-fab day centre that in the later years became her second home (thank you, Bay Tree!), things went relatively smoothly.
Of course, sometimes we’re not at home; for example, we all need hospitals from time to time. As soon as I started taking Mum to hospital appointments, I realised that things went wrong there because of her memory. Soon, I could tell you in advance what would definitely go wrong during a hospital visit because of her memory – or rather, because the hospitals didn’t have a way of adapting the system to her memory-status. One particular hospitalisation gave me twenty-two days (instead of the expected five to seven days) to reflect on what typically, routinely, relentlessly goes wrong, and why – and, more to the point, how that situation could be turned around. I realised that hard-working, well-meaning hospital care was often inappropriate and potentially dangerous to a person with memory-impairment but that, routinely, hospital staff were delivering that care without ever knowing that their well-meant actions were directly contributing to the extended length of stay that is so typical for people with dementia.
And why would anyone expect that to be otherwise? After all, it had taken me years to learn the techniques I’d acquired – and a lifetime to know this lady so well that I could tune into all the nuances of her actions, reactions and needs. Why do any of us expect hospital staff to know something they’ve never been taught? As a teacher – and a skills teacher at that – I began to form a plan …
To be continued…
This time last year I had a small idea.
To build on my Whose Shoes? concept, looking at issues from different perspectives, I would ask a wide range of people to write a blog and I would post them, one a day, during Dementia Awareness Week.
And I did. These were the blogs I posted that week.
But it is no good just raising awareness for one week and then doing nothing more.
And so, my small idea became a big idea.They are like a jigsaw puzzle where we do not know the number of pieces but each piece adds a little more to the finished picture, an important insight. I have been thrilled by the quality of the contributions and sincerely thank all the great people who have each taken time and trouble to share wonderful projects, passionate pleas, and personal experiences. It has been a very lively year. Through the blog series and associated work, I have met inspirational people and made deep friendships.
And so, there have been some great initiatives and a lot of hype over the last year. The government’s Dementia Challenge has added some much needed oomph; I like to feel that our spontaneous #dementiachallengers movement has added groundswell and a refreshing element of ‘Making It Real’.
My family and I live with #dementia and loss. Where is our Macmillan nurse alternative? Someone to walk beside us? #dementiachallengers—
Suzy Webster (@suzysopenheart) May 15, 2013
For me the benchmark is not government statistics or sparkling projects. I will know we are making a difference when I hear people in the pub talking openly about dementia, without stigma or prejudice. I will know we are making a difference when people experiencing early symptoms of dementia and their families routinely get care, understanding and support every step of the way.
There is nothing scientific about this blog. It is not intended in any way to be a summary of the year. I’m not going to re-visit the fantastic arts projects, the wonderful community activities at the Healthy Living Club or tell you about the Baissez Down song. I am just picking out a few highlights or things that come to mind. Or, like my Mum’s blogs, some ‘random thoughts’… and a few random awards 
Very emotive talk on 'living with dementia – a relatives experience' from Yvonne Hague. Thank you for sharing. We must do more #dementia13—
James Wenman (@jrw999) May 15, 2013
It is encouraging to see the UK so apparently high profile in the work of dementia research and forward-thinking.
UK to use G8 Presidency to identify and agree global approach on #dementia research ow.ly/l2E61 #G8UK #dementiachallenge—
UK Prime Minister (@Number10gov) May 15, 2013
My prize for the most succinct tweet goes to Dr Karim Saad. I loved the sheer brilliance of summarising two years work by 19 countries in 140 characters :
VIDEOS > 2 years' work in 7 brief clips bit.ly/WZFoqV #ALCOVE #Dementia #Europe @Jeremy_Hunt @JeremyHughesAlz @NormanLamb
RT—
Karim Saad (@KarimS3D) March 28, 2013
But many issues remain:
#ALCOVE answered many questions but asks many more.
It's a mess out there!
#implementation #dementia #Europe #health #inequalities—
Karim Saad (@KarimS3D) March 28, 2013
These things take time to happen. To filter through the system. To get to the point where it is the norm when someone in the ‘average’ community experiencing dementia has the best possible outcome in terms of treatment (or not), non-judgmental support and a good quality of life.
There has been an energy about the last year. I found this tweet VERY exciting…
@WhoseShoes the powers that be are you & me! I repeat..you & me! #dementiachallengers #NHSCallToAction #makingithappen—
Karim Saad (@KarimS3D) October 17, 2012
#Dementiachallengers are impatient people. We want to improve things for Fred and Doris’s children and grandchildren… but for Fred and Doris too. Sorry, you will have to read on to meet Fred and Doris but you get the idea.
It frustrates me to see that people find Admiral Nurses a “lifeline” and relatively inexpensive … but yet there are so few of them around.
Sometimes my frustration comes through…
Do the maths… There are currently 800,000 people with #dementia in the UK. There are 102 Admiral Nurses in the UK. Busy people. RT—
Gill Phillips (@WhoseShoes) May 16, 2013
@WhoseShoes discussing this gap yesterday in our day hospital. Lots of families who would benefit but only one borough has them locally.—
Sophie Edwards (@docofagesSophie) May 16, 2013
@nursemaiden @suzysopenheart @Kimbohud theyare a charity, no help to me called them 4 7mth desperate 4 help, called me a wk afta dad in care—
margaret kilby (@mkilll) May 18, 2013
@drlfarrell @whoseshoes education, strategies,resources, one to one counselling, telephone advice, support, advocacy #admiralnurses—
Sophie Edwards (@docofagesSophie) May 16, 2013
@docofagesSophie @drlfarrell Yes, yes, yes. Holistic support. Not just medical
Gill Phillips (@WhoseShoes) May 16, 2013
.@bill_russell3 Hmm. Can we afford not to? Cheaper to have #carers in crisis & ppl in care homes or as horribly named shamed "bed blockers"?—
Gill Phillips (@WhoseShoes) May 16, 2013
And then worse news:
@WhoseShoes Looks like our Admiral nurses will be cut by50 %—
Hilary Marmot (@HilaryMarmot) May 17, 2013
@WhoseShoes So difficult now. Dementia specialists working with Gvmt to raise dementia awareness
Hilary Marmot (@HilaryMarmot) May 17, 2013
How can this fit with the high priority apparently being given to dementia?
Why is it so important to channel more resources into actively seeking out new people with the earliest stages of dementia if there are not enough resources to provide a clear care pathway for those receiving a diagnosis – or even, in many cases, basic support?
In this context, I am a big fan of the Grassroots GPs group - another initiative that has sprung up spontaneously during the year. I have had the pleasure of getting to know this passionate group of GPS who take a very person-centred, holistic stance.
On Friday I accompanied my friend to hospital for a very scary eye operation.
I was reminded yet again how much encounters with professionals who really care matter when you are at your most vulnerable:
@WhoseShoes amazing what a difference a caring attitude means to us when we are scared and vulnerable—
Fiona Quigley (@FionaQuigs) May 17, 2013
Anyway, back to dementia… We have some wonderful writers and contributors within #dementiachallengers. Lots of common sense, derived from years of experience of caring for loved ones with dementia, provides compelling copy. Beth Britton, who wrote an early guest blog for our series, writes her own ‘D 4 Dementia’ blog. Honestly, if nurses only have an hour allocated to dementia training (as has been alleged), matching it with another hour spent browsing Beth’s blog would be a wonderful thing…
I also hugely admire the work of Ming Ho, an extremely talented writer. Ming shares what I would call the ‘dark’ side of dementia in ‘(Dementia Just Ain’t) Sexy‘.
@Independent
My mum has similar paranoias. Will be blogging about this; meanwhile, see delusion in this incident: dementiajustaintsexy.blogspot.co.uk/2013/02/the-cr…—
Ming Ho (@Minghowriter) May 07, 2013
It is easy in a land where we are all trying hard to be optimistic and positive to ignore the ‘difficult’ agenda. I know my own father-in-law broke his devoted wife’s frail arm as he brought his own arm down suddenly as she tried to comb his hair. A friend’s mother approached her from behind with a knife as she sat at a dressing table, looking for the money her Mum said the carer had ‘stolen’ – it was only the mirror that alerted her.
This reminds me of an inspirational person I follow on Twitter who has Stage 4 metastatic breast cancer. She feels marginalised by all the talk of “fighting the illness” through positive thinking, as though it is somehow her fault that her illness has recurred and spread.
As you will know, I love a ‘can do’ attitude.
So, my ☆,.-~J*DI ☆,.-~’ #dementiachallengers prize goes to Lee (@dragonmisery) for her wonderful dementiachallengers.com website. As a carer for her own Mum, living with dementia, Lee saw a gap in the market. And like so many great ideas, it was simple.
To co-produce a website of really practical information, written by carers, for carers.
Caring for a relative w/ #dementia from a distance? Info, links, preparing for emergencies & tips from #carers ow.ly/kWzFQ—
Lee (@dragonmisery) May 12, 2013
Lee turned this from a brilliant idea… into a brilliant reality in record time.
We were are delighted when it got a mention last week in the Sunday Express.
dementiachallengers.com mentioned in The Express on Sunday as being "an excellent website"
express.co.uk/life-style/hea…—
Lee (@dragonmisery) May 14, 2013
@dragonmisery well done Lee. Amazing what you have achieved and in such a timeframe! All power to you.—
Susanna Howard (@howardsusanna) May 14, 2013
@WhoseShoes I am floating, I am floating…. really pleased at the fab mention—
Lee (@dragonmisery) May 14, 2013
@dragonmisery well done – getting the message to more people everyday..—
Julie Christie (@juliechristie1) May 14, 2013
And some great advice from Anna Hepburn, who has been very supportive of Lee and her great site:
@dragonmisery @elafarrell Not everyone will like what you do but it's a great site helping loads of ppl – keep up the good work.—
Anna Hepburn (@AnnaHepburnDH) May 14, 2013
Obviously the big highlight for me has been my fab new partnership with Think Local, Act Personal (TLAP) and the launch of Whose Shoes?® - Making It Real alongside two fab new booklets: Making It Real for people living with dementia and Making It Real for Carers.
Here is the fab new Whose Shoes? / TLAP leaflet!
I am very grateful to a growing circle of supportive people who ‘get’ what I am trying to do and the wave of goodwill that flooded in for my launch event.
Larry Gardiner, living with #dementia, invites EVERYONE to walk in his shoes: wp.me/p1enjT-1WY #dementiachallengers—
Gill Phillips (@WhoseShoes) May 15, 2013
Take a walk in the shoes of the people u care for – check out the brilliant work of @WhoseShoes nutshellcomms.co.uk #dementiachallengers—
Beth Britton (@bethyb1886) May 14, 2013
Carers are in the news at the moment. Will the Queens Speech bring some respite?
Well not the speech itself, obviously.
It is great to get Twitter streams from conferences but sometimes depressing when the sound-bites and key messages seem oh so familiar…
#dementia13 Helen Taylor @DementiaUK carers often feel have to battle to be heard. Makes such a difference when included as partners in care—
PublicServiceEvents (@pserviceevents) May 15, 2013
There are some real ‘thinkers’ in our group. Ela Farrell pointed out that the role of the ‘carer’ is not just family. Sometimes ‘community’ roles can progress into unrealistic expectations or obligations. Professionals must make sure they do not take advantage of ‘caring’ people or take them for granted.
Forced to Care elafarrell.co.uk/?p=194 @WhoseShoes @wwwframeworks4c @dragonmisery @SarahReed_MHR @edanaming compelled to write this today—
Ela Farrell (@elafarrell) May 12, 2013
Ela tweeted about how she had come home from work to respond to an alert from an elderly neighbour. Meanwhile Ela’s mother was being drawn deeper into being expected to adopt a caring role for her long-term friend and neighbour whose needs are increasing. I could relate to this as my own 91 year old Mum felt quite responsible for her “twin” (same age) friend, living alone with dementia, to the extent that I heard Mum had been round to the back of her friend’s house in the snow when she failed to answer the door. If Mum had fallen then, no-one would have had a clue where she was!
Talking of tracking my mother’s antics in the snow…
There are exciting possibilities … and big concerns… around the use of technology:
I agree! @dragonmisery @bethyb1886 we need much more awareness & good advice for #carers about suitable tech solutions—
Shirley Ayres (@shirleyayres) May 10, 2013
Really grateful to @KarimS3D for this reminder about AT innovations from
'The Design Council'
designcouncil.org.uk/our-work/chall…—
Legal Aware (@legalaware) May 15, 2013
Police tags for dementia patients would be a lifesaver mirr.im/YkX0OH by @realmissfiona via @DailyMirror #GPS #technology RT—
Karim Saad (@KarimS3D) May 04, 2013
BIG steps forward here – and some BIG questions being asked about past practices. I remember visiting my father-in-law in an awful dementia facility just before he died in 2000 and seeing frail people strapped into ”bucket chairs” so that they couldn’t escape…
@KarimS3D That is great. But it is a legitimate question to ask WHY we over-prescribed these meds in our frail elderly in first place? 1/2—
Peter Gordon (@PeterDLROW) May 15, 2013
The NHS chats on Twitter are very energising and positive. I love the work of Helen Bevan (@helenbevan) and the powerful simplicity of NHS Change Day: such a clever way of engaging people at all levels. I similarly admire the gentle leadership that Andy Bradley (@wwwframeworks4c) is bringing through his focus on compassion. Debbie Sorkin and the National Skills Academy Team are looking further at values-led approaches and leadership at all levels, rather than traditional top-down models. SCIE’s ‘Find Me Good Care’ and video resources provide highly practical tools.
Inevitably, #dementiachallengers have had key areas of disagreement over the last year.
I see this as positive as it is impossible to have a group of such passionate people from such different perspectives and for this not to be so. The important thing for me is ALWAYS to keep the ‘the person’ in the centre and think whether this argument, this particular use of resources is making things easier for them. This in itself is tricky as I see a difference between what helps in the shorter-term (very important when resources are so tight) or what will or may help in the longer-term (very important when resources are so tight). None of this is easy.
Meanwhile, we are eagerly awaiting @legalaware’s forthcoming book: ”Living well with dementia”. It has had very positive feedback from a wide range of people – both academics and lay people, which is the divide that is so important to bridge. I have been honoured to have a sneaky preview.
@legalaware @dragonmisery Congratulations Shibley! You should be very proud of this wonderful endorsement! Well deserved!
Gill Phillips (@WhoseShoes) May 15, 2013
.@legalaware @dragonmisery Indeed. And this is where our very diverse #dementiachallengers alliance is so powerful! Breaking down #silos!
Gill Phillips (@WhoseShoes) May 15, 2013
People have been very supportive of my blogging series. I was honoured to be invited to write a couple of blogs about the “in my shoes” series for the LSE (blogging about blogging … poor, long-suffering Mr Whose Shoes? despaired!) and to give a talk about it to the West Midlands Co-production group.
I was particularly thrilled to get this lovely mention on the fab “Disruptive Social Care Podcast – (recently back on air!) Richard Humphries, Senior Fellow at the King’s Fund said the Whose Shoes? blog helps remind him “what it is all about”
I personally am looking forward to some powerful Whose Shoes? workshops, co-presenting with Larry Gardiner. We have one lined up with students via the College of Medicine – students from different universities and different disciplines… and inviting in some other perspectives too! It all sounds like the ticket for breaking down a few more barriers and silos
https://twitter.com/KarimS3D/status/335273151221084160
The last word goes to Hilary Marmot. Her Fred and Doris story is brilliant.
Very funny, if it weren’t so near the truth…
@nurse_w_glasses @karims3d @whoseshoes @nursemaiden Did you read my Fred & Doris story? rcpsych.ac.uk/pdf/Hilary%20K…—
Hilary Marmot (@HilaryMarmot) May 13, 2013
If you could bottle the passion in that room, it would be priceless. I wrote last week about the build up to this event: for me, a brilliant partnership with the Think Local, Act Personal team (TLAP), as they are lovely people and have a totally ‘can do’ refreshing approach.
‘Making It Real’ is not a theory. It is a lived experience. The room sang with the voices of for whom this is a daily reality:
@WhoseShoes Today sees the launch of a new Whose Shoes co-production toolset; we say "nothing about us without us!" take a walk in my world!—
Oxfordshire Advocacy (@AdvocacyOxon) May 02, 2013
James Lampert (@uk_james) from Kent had kindly come early to have a preview of the new Whose Shoes? tool but it was initially ‘all hands on deck’. Before he knew it, he was roped in to decorating the room with some of the fab graphics that Anna Geyer (New Possibilities) had produced at some of the key workshops we have co-facilitated, building the tool and mapping it to the ‘Making It Real’ framework.
Soon we had set up the electronic version of the new ‘Whose Shoes?® – Making It Real’ electronic tool on five tables, in ‘my corner’ of the room with a gifted team of co-facilitators ready to help people try it out! James got his preview and, as someone who has used the board version in both a Local Authority and university setting, his positive feedback was very important to me.
It is brilliant that so many of the key TLAP people, partners and supporters are on Twitter as this helps build the buzz of an event such as this. The tweets here just give a flavour – there was a perfect Twitter storm!
We were quite serious about getting #makingitreal trending at 4pm. What would be a better thing to trend? But in the event we were all enjoying the face to face experience too much, which is really how it should be …not to mention the #cake!
TLAP Chair @clentonF: “#MakingitReal links professionals, service providers & the community to spread knowledge and encouragement”—
TLAP (@TLAP1) May 02, 2013
Thrilled and honoured to be working with @TLAP1 New web pages for launch event look fab! thinklocalactpersonal.org.uk/BCC/Latest/res…—
Gill Phillips (@WhoseShoes) May 02, 2013
@billatmacintyre @clentonF @TLAP1 @WhoseShoes Expecting it to be a jolly good day!—
Miro Griffiths (@MiroGriffiths) May 02, 2013
Haapy 2nd Birthday to #makingitreal : read the story here and make it trend at 4pm. bit.ly/10XDnQy—
Peter Hay (@peter_hay) May 02, 2013
Happy birthday #makingitreal hope the launch of support materials on dementia + carers and the exciting new MIR Whoseshoes goes really well—
martin routledge (@mroutled) May 02, 2013
At one point even the TLAP website keeled over with all the hype:
Website working again, phew! View our fantastic new products here bit.ly/ZBchMm—
TLAP (@TLAP1) May 02, 2013
446 orgs signed up to @TLAP1 #makingitreal – inc more than one third of #localgov orgs says @MiroGriffiths < shame not all!—
James Lampert (@uk_james) May 02, 2013
Great job @MiroGriffiths and @clentonF chairing the #makingitreal event and showcase this afternoon – hope many more orgs sign up! Why not?!—
James Lampert (@uk_james) May 02, 2013
We have a powerful talk about the realities of caring from Dame Philippa Russell and we hear about some of the showcase ‘Making It Real’ projects:
@WhoseShoes: We are honoured to have Dame Philippa Russell here. Only 5 mins. Has to hurry… But #carers are used to that!! #makingitreal—
Gill Phillips (@WhoseShoes) May 02, 2013
#makingitreal puts *us* in charge, not the services: Philippa Russell, Standing commission on Carers at @tlap1 celebration—
jaimee lewis (@jaimeelewis) May 02, 2013
Taking time to use #MakingItReal approach has been key for @ActionOnHearing – embedding rather than speedy tokenism—
James Lampert (@uk_james) May 02, 2013
. @billatmacintyre "Important guiding principle of #makingitreal is the integrity & honest of publishing action plans online" #makingitreal—
jaimee lewis (@jaimeelewis) May 02, 2013
Good to hear @TLAP1 pulled the government back into line! When you have excellent #makingitreal themes & 'I' statements… why use others?—
Gill Phillips (@WhoseShoes) May 02, 2013
@WhoseShoes @billatmacintyre #makingitreal this is ground breaking radical, fun and life changing for those who play Makes us all more real—
Andy Bradley (@wwwframeworks4c) May 04, 2013
Making It Real for Carers
@WhoseShoes @tlap1 exciting bit
jaimee lewis (@jaimeelewis) May 02, 2013
Now @MoiraTweets from @CarersTweets about #makingitreal for #carers – showing what works for carers in the real world—
jaimee lewis (@jaimeelewis) May 02, 2013
#makingitreal for #carers being launched! Getting carers personal budgets sorted can be stressful http://t.co/PEDQzvkLAl—
James Lampert (@uk_james) May 02, 2013
Making it Real for Carers – Latest resources – Think Local Act Personal buff.ly/13QCkik
Hope #carers orgs sign up to #MakingItReal—
James Lampert (@uk_james) May 03, 2013
All social care organisations should use #makingitreal thinklocalactpersonal.org.uk/_library/MIR_c… to check that their services really make carers' lives easier—
Mike Ewins (@MikeEwins) May 02, 2013
Making It Real for People with dementia:
Now @CatherineWilton: #makingitreal for people living with #dementia @TLAP1—
jaimee lewis (@jaimeelewis) May 02, 2013
New resource, Making it Real for People with #Dementia – Think Local Act Personal buff.ly/13QCtSJ < great egs #MakingItReal in action—
James Lampert (@uk_james) May 03, 2013
#makingitreal for people living with dementia means that two thirds of people are living in the community.—
Larry Gardiner (@1cheerfulman) May 02, 2013
And then it’s my turn!
Wish me luck #dementiachallengers! #WhoseShoes represents collective voices. #makingitreal is not about spin. Real voices. Real people!—
Gill Phillips (@WhoseShoes) May 02, 2013
@WhoseShoes Good luck ! hope all goes well… keep us posted
DemenShare (Diane) (@DemenShare_) May 02, 2013
@WhoseShoes good luck looks fab from the pics shared already #makingitreal—
Darren Gormley (@MrDarrenGormley) May 02, 2013
@WhoseShoes You and your project are simply brilliant – you as such don't need luck as you deserve very much your success Gill!—
Legal Aware (@legalaware) May 03, 2013
Now it's Gill from @whoseshoes launching her awesome Whose Shoes #makingitreal #coproduction tool @tlap1—
jaimee lewis (@jaimeelewis) May 02, 2013
Good luck @WhoseShoes – launching right NOW! #makingitreal http://t.co/5YiNrIZqvF—
James Lampert (@uk_james) May 02, 2013
For my presentation, people were expecting me to talk for five minutes about Whose Shoes? It was an amazing experience as I looked around and saw so many of the wonderful people I have worked with to co-produce Whose Shoes? gathered together in one room.
But Whose Shoes? is not about what I think.
It is about real people, real voices.
So we did a ’flash mob’ with people springing to their feet around the room and contributing, reading different Whose Shoes? messages from different (i.e. their own) perspectives.
And @WhoseShoes is here "It's about real people & real views" – so of course it's members of audience doing the talking truly #MakingItReal—
Andrea Sutcliffe (@Crouchendtiger7) May 02, 2013
. @uk_james @clentonF @vicrayner sharing snippets of scenarios from @WhoseShoes #makingreal tool—
jaimee lewis (@jaimeelewis) May 02, 2013
Proud to have been a part of the @WhoseShoes flash mob! Thanks to Gill and others who spoke
James Lampert (@uk_james) May 02, 2013
@WhoseShoes very moving and thought provoking presentation. Happy 1st birthday! #makingitreal—
Justine Thompson (@JustineNHS) May 02, 2013
The video of the whole presentation will be available soon. But, to give you a flavour, here is the powerful ending: “Walk in my shoes” by Larry Gardiner, living with dementia:
We then had an hour for everyone to take a look at the three new products and I was thrilled to get the chance to show Whose Shoes? to key people who have supported and encouraged its development.
First up were a group that included Bill Mumford, CEO of Macintyre, Justine Thompson, Patient & Public Involvement Lead from NHS England and Laura Robinson, Policy & Communications Advisor at National Voices. What a great group! We only really had time for a ‘demo’ of some of the features which was a shame as this would have made a brilliant discussion group. (Laura Robinson had had a sneaky preview as she was one of many people who helped with testing the prototype!)
Hurray! @clentonF @MiroGriffiths @TLAP1 #makingitreal celebrating its 1st birthday today with updates for carers, dementia and @WhoseShoes—
Bill Mumford (@billatmacintyre) May 02, 2013
Such passion at TLAP event with Making it Real/Whose Shoes. No wonder I'm in dark glasses #makingitreal
http://t.co/X1osO4olvT—
Justine Thompson (@JustineNHS) May 02, 2013
It was interesting that, in traditional Whose Shoes? style, each group was completely different. The next, much larger, group included Larry Gardiner and Andrea Sutcliffe, CEO of the Social Care Institute for Excellence. (Official photos to follow!) Andrea’s team had contributed a variety of audios in the tool - I’m not sure whether she recognised any of the voices!
And Larry, as always happens when we involve ‘Experts by Experience,’ wowed people with his insights and practical ideas for using Whose Shoes? as a tool for ‘Making It Real’.
Gill Phillips, creator of @WhoseShoes in full launch demo mode @TLAP1 #MakingItReal, with @crouchendtiger7 http://t.co/0uPLj2ODAs—
Stuart Arnott (@MindingsStu) May 02, 2013
Very inspiring launch of @WhoseShoes @TLAP1 #makingitreal here this arvo—
Sam Bennett (@samhbenn) May 02, 2013
Graphics by my talented friend, Anna Geyer, New Possibilities
The third group happened to be mainly carers – ranging from an award winning young carer to Elaine Edgar, Head of Policy, Carers Team at the Department of Health. We used the search facilities in the electronic tool to select scenarios directly relevant to carers. Soon we had a lively discussion about a lady in a residential home who wanted to keep her ‘own’ hairdresser rather than the one employed by the care home. There was a ‘lightbulb moment’ when a young group member said that she likes to have her own regular hairdresser. Why shouldn’t older people?
Yes…we were ’Making It Real’!
And then it was time for cake – TLAP know how to do a good celebration cake!
Not long now till cutting the #makingitreal cake. Great celebration of all work in yr 1 and reminder of need for yr2! twitpic.com/cnmbeb—
Vic Rayner (@vicrayner) May 02, 2013
Cutting the celebratory @TLAP1 #MakingItReal cake. Successful @WhoseShoes electronic game launch! http://t.co/t2qQ9uCAC3—
Stuart Arnott (@MindingsStu) May 02, 2013
And we all chatted like mad - people I knew, people I met for the first time.
Many, I at least “knew” from Twitter such a Clare Horton @clare_horton from the Guardian and Michael Edwards @michaellondonsf whom I’d had intense conversations with to try and help secure funding for the fab Healthy Living Club in Lambeth!
Soon-to-be-tweeting Debbie Sorkin, CEO of National Skills Academy, came beetling in from a meeting. People had made a huge effort to be there and I appreciated it!
All too soon, the event was over … but the buzz continued…
Fantastic #makingitreal event today, learnt lots about new #dementia & #carers guides and new @WhoseShoes tool @TLAP1—
James Lampert (@uk_james) May 02, 2013
Met the lovely @WhoseShoes @ #Makingitreal bday, previewed new #personalisation tool – really is worth the hype! bit.ly/1560oC6—
(@LauraBoyd) May 03, 2013
#FF to @WhoseShoes & @TLAP1 for a great afternoon #MakingItReal. Props to orgganisers @MiroGriffiths @ClentonF @jaimeelewis @ShahanaRamsden—
Stuart Arnott (@MindingsStu) May 03, 2013
If you missed our #makingitreal 1st anniversary ebulletin don't worry – it's here bit.ly/1564R7S—
TLAP (@TLAP1) May 03, 2013
What is #makingitreal ? Our short video will explain all bit.ly/16lsObc #personalisation—
TLAP (@TLAP1) May 10, 2013
If you could bottle the passion in that room yesterday, it would be priceless. thinklocalactpersonal.org.uk/nl/view.cfm?ni… #MakingItReal #whoseshoes—
Gill Phillips (@WhoseShoes) May 03, 2013
@WhoseShoes #MakingItReal #whoseshoes that is the genius of the work u have done Gill. Thru tool can recreate the passion. Train trainers?—
Andy Bradley (@wwwframeworks4c) May 04, 2013
@WhoseShoes thank you. it was good to finally meet you too—
Clare Horton (@clare_horton) May 13, 2013
How did it go?
@SarahReed_MHR @whoseshoes @uk_james hope Gill feels this too, but I think it went brilliantly – a very creative way to present as well—
Andrea Sutcliffe (@Crouchendtiger7) May 04, 2013
Superb set of tools launched today by Think Local Act Personal. Read them. Adult care at its best. @WhoseShoes @TLAP1 thinklocalactpersonal.org.uk/News/Personali…—
Alan Rosenbach (@AlanRosenbach) May 02, 2013
@SarahReed_MHR @WhoseShoes went fab. Have you seen all the #makingitreal tagged posts? Lots of pics—
James Lampert (@uk_james) May 04, 2013
@WhoseShoes @new_possibiliti @our @kathevans2 @m76_linda @anniecoops @anyadei Now you are giving the game away Gill – but it's true!—
Justine Thompson (@JustineNHS) May 07, 2013
TY @KarimS3D. It was great! And surreal. And #whoseshoes #makingitreal is now live! nutshellcomms.co.uk @nurse_w_glasses @wwwframeworks4c—
Gill Phillips (@WhoseShoes) May 08, 2013
@WhoseShoes great to meet you too, been talking #makingitreal back at @KentSocialCare #energised @hansonemma66 @jo_empson @tidmarsh_anne—
James Lampert (@uk_james) May 04, 2013
@uk_james TY James! Lovely to meet you & Teresa
Gill Phillips (@WhoseShoes) May 04, 2013
@simonaflorio1 @whoseshoes yes – we all had a lot in common. Like-minded individuals who want to change the world! #makingitreal—
Shahana Ramsden (@ShahanaRamsden) May 05, 2013
#ff @clentonF @MiroGriffiths @1cheerfulman great advocates for why everyone in #socialcare should be taking personalisation & #makingitreal—
James Lampert (@uk_james) May 03, 2013
I was thrilled when the very first (Twitter) order came from a small, innovative care provider in Cornwall:
@WhoseShoes @Sensoriel_CIC Not there sadly but have purchased the e tool nutshellcomms.co.uk for use with my dom care company.—
Angela Downing CEO (@Reflectionsw) May 04, 2013
@WhoseShoes @Reflectionsw can you email us more info as sensoriel wasn't there info@sensoriel.co.uk thanks—
Sensoriel (@Sensoriel_CIC) May 04, 2013
It is refreshing how often small enterprises just ‘go for things’. It is something I love about running a small business myself. Decision making is quick and responsive. We are delighted that Reflections SW have accepted a free copy of the ‘board version’ too as I love an ‘early adopter’. We are very keen to receive their feedback and creative ideas to help people get added value and encourage more people to sign up to ‘Making It Real’.
Cornwall… I smiled as I thought back to a very early prototyping session for the original ‘board version’ with my pal Sarah McBride and colleagues from Cornwall County Council… and was delighted to hear that Cornwall has JUST signed up for ‘Making It Real’.
It is great that I am now in contact with so many other entrepreneurs and innovators. We understand each other’s journey and the highs and lows and risks involved.
I was sorry that my Twitter pal @legalaware was unable to attend the launch but thrilled that his wonderful new book on living well with dementia (which contains an in-depth case study of the Whose Shoes?/TLAP partnership) is coming to fruition at more or less the same time as my project:
@WhoseShoes @TLAP1 @dragonmisery Thanks Gill. I'm really pleased for your work in WS/TLAP as you've put your heart totally into it.—
Legal Aware (@legalaware) May 06, 2013
I think my book must be nearly finished – otherwise, I'll end up refining it forever. Thanks to @WhoseShoes. "coelum ad proelium elige"—
Legal Aware (@legalaware) May 12, 2013
After the launch, I really needed to chill out. That weekend we had a lovely family trip to a Bluebell wood. I feel very lucky to still have my lovely Mum (@Gills_Mum - tweeting at 91!) to share successes. She doesn’t understand all the details but still has that unique reaction that a parent has who shares the ups and downs and is there for you whether they understand the detail or not. She enjoyed a Twitter session when we got back (‘enjoyed’? – yes, I think she is starting to…)
It felt a bit like a ‘school report’ – but probably better than the ones I sometimes got when I was at school…
@Gills_Mum @WhoseShoes ahhh… Bluebells, it's that time of year. Was lovely to meet Gill earlier in the week at #MakingItReal – be proud!—
James Lampert (@uk_james) May 05, 2013
@Gills_Mum @WhoseShoes happy to report yr daughter was a marvel at the #makingitreal do – great to see her ideals and vision coming to life!—
Vic Rayner (@vicrayner) May 05, 2013
@Gills_Mum @whoseshoes Gill did a great job at the launch – you'd have been proud I think! #MakingItReal—
Andrea Sutcliffe (@Crouchendtiger7) May 05, 2013
Thank you! Let’s Make It Real.
Sometimes in life there is a *very big* date on the calendar.It looms very large and dominates your life – and you can’t really imagine it coming and going like any other day.
Thursday 2 May 2013 marked the first birthday of ’Making It Real’, and the launch of three new tools. For me, the main event was the launch of the electronic facilitation tool that I have been working on for so long: Whose Shoes?® – Making It Real, in an innovative collaboration with Think Local, Act Personal (TLAP).
@TLAP1 #makingitreal 1yr old today. 3 great new tools launched to mark the event bit.ly/ZBchMm. get #makingitreal trending at 4pm—
HSCP (@Health_SocialCP) May 02, 2013
A fab hand-written card from my lovely @Gills_Mum. When it matters. Not a tweet in sight
Gill Phillips (@WhoseShoes) May 01, 2013
#makingitreal Happy Birthday MIR- sorry I can't be there to celebrate your very impactful 1st year. Exciting to think what's still to come!—
Ian McCreath (@IanMcCreath) May 02, 2013
Celebrating 1 year of #makingitreal, launch for #carers, #dementia @WhoseShoes, sorry can't be there in person but definitely in spirit—
Sharon Allen (@sharonallensfc) May 02, 2013
Happy Birthday to all involved in #MakingItReal a great first year and cause for hope despite all the challenges @TLAP1 @clentonF @MIRDudley—
Matt Bowsher (@MattBowsher1) May 02, 2013
#makingitreal people who are affected by services can hold these services to account.—
Larry Gardiner (@1cheerfulman) May 02, 2013
I have previously guest blogged for TLAP about how this partnership first came about and last week, I told the story of how this has taken shape over the last year. Please indulge me as I now tell you about the ‘big day’ itself
As I travelled down on the train, Twitter was buzzing with the #makingitreal hashtag in the way that only Twitter can; anticipation builds for the amazing networking that lies ahead. I was delighted to get into a spontaneous ‘Twitter storm’ with the inspirational Larry Gardiner as we each made our way to the event.
Larry ’gets’ Whose Shoes?…
Walk in my shoes. It's not so hard to do. Just imagine if you were me. And I for once were you… @AdvocacyOxon @anyadei #whoseshoes—
Gill Phillips (@WhoseShoes) May 02, 2013
@WhoseShoes Today sees the launch of a new Whose Shoes co-production toolset; we say "nothing about us without us!" take a walk in my world!—
Oxfordshire Advocacy (@AdvocacyOxon) May 02, 2013
@WhoseShoes Think Local Act Personal: "I want a life worth living instead of long slow goodbye!" Take a walk in my world and make it real!—
Oxfordshire Advocacy (@AdvocacyOxon) May 02, 2013
@WhoseShoes "I want my social worker to take a walk in my shoes!"—
Oxfordshire Advocacy (@AdvocacyOxon) May 02, 2013
@WhoseShoes "I want my GP to take a walk in my shoes!"—
Oxfordshire Advocacy (@AdvocacyOxon) May 02, 2013
@WhoseShoes "I want my dentist to take a walk in my shoes!"—
Oxfordshire Advocacy (@AdvocacyOxon) May 02, 2013
@WhoseShoes "I want my district nurse to take a walk in my shoes!"—
Oxfordshire Advocacy (@AdvocacyOxon) May 02, 2013
Take a look at @AdvocacyOxon Twitter stream to understand #whoseshoes. Larry invites EVERYONE to 'walk in his shoes' nutshellcomms.co.uk—
Gill Phillips (@WhoseShoes) May 02, 2013
And so it went on… bank staff, care assistants, nurses, care home providers, commissioners, NHS managers, Clinical Commissioning Groups, local authority staff, the housing department, elected members, the Department of Health… all the different voices of Whose Shoes!
@TLAP "I want No 10 Downing Street to involve me in decisions about me and make it real!"—
Oxfordshire Advocacy (@AdvocacyOxon) May 02, 2013
Larry and I are looking forward to working closely together as we co-present events, including residential experiences for people living with dementia and carers; also students from across the country at an event organised by the College of Medicine. I can see us spending long hours plotting and planning how to use Whose Shoes? further to spread the ethos of co-production and ‘Making It Real’!
As I continued my journey, the omens were good.
I like a few good omens … I didn’t study Classics for nothing.
The sun was shining.
A string of live tweets sprang up from a Whose Shoes? event in Scotland!
Just about to play @WhoseShoes with #ideasXchange—
Andrew & Joanna (@HomeInsteadEdi) May 02, 2013
Kicking off @whoseshoes with some discussions: spending budgets on football tickets, how to cope with change, financial abuse #ideasXchange—
Changing Support (@ChangingSupport) May 02, 2013
Where do you draw the line when spending budgets? "There shouldn't be limits" #ideasXchange—
Changing Support (@ChangingSupport) May 02, 2013
People think my husband can't speak,so they don't think it's worthwhile having him be part of the conversations" #ideasXchange—
Changing Support (@ChangingSupport) May 02, 2013
Our #ideasXchange has drawn to a close, we had some fantastic conversations, thanks to all who attended—
Changing Support (@ChangingSupport) May 02, 2013
Meanwhile, greetings were flooding in – particularly from fab supporters who were unable to be there on the day. I sat for a while chilling out in the sunshine as my phone pinged with goodwill messages and phone calls:
@WhoseShoes @shirleyayres @TLAP1 Brilliant work Deep care and commitment over decades manifests TY Gill for what u stand for #empathymatters—
Andy Bradley (@wwwframeworks4c) April 30, 2013
@WhoseShoes all good fortune with the launch today – hope it is a really great event and a lot of success ahead Best wishes Marc+Deborah—
Vintage Communities (@vintcomm) May 02, 2013
Big shout out to @WhoseShoes on today's launch of the electronic #WhoseShoes #makingitreal (supported by @TLAP1) ow.ly/kD7Zh—
Stuart Arnott (@MindingsStu) May 02, 2013
Congrats to @whoseshoes on the launch today of the electronic #WhoseShoes bit.ly/13OsVrj #makingitreal @tlap1
— Shirley Ayres (@shirleyayres) May 2, 2013
@WhoseShoes < best wishes for London launch
Karim Saad (@KarimS3D) May 01, 2013
I felt drained already by the time I reached the venue in London…
You are probably exhausted reading about it…
I think I had better hold the best bit back for the next blog…
(to be continued…)
This blog has been ‘pending for a couple of weeks – I’ve had other things on my mind – but it seems a nice one to post for a leisurely Bank Holiday…
I popped over to see Mum (aka @Gills_Mum) the other day and she had a glint in her eye. She handed me a beautifully handwritten manuscript with her latest ‘random thoughts’ . I looked anxiously and was pleased that it just chatted about her day in town and didn’t detail our lively chats about Margaret Thatcher’s life and legacy and other more political issues…. Mum has some pretty strong views about some things. I don’t always share them.
Mum does have a computer and is a good typist. But it is upstairs and not very handy. I have offered to bring it down but apparently this would “mess up the house”. I am working towards an iPad… but as, you will have gathered, my ideas are just that. Independence, choice and control and all that… as Mum loves to remind me ;)
I caught the 9 o’clock bus today instead of the 11 o’clock. It was full up and a whole new set of people appeared. Old, of course, but very sprightly and much more talkative! They all seemed to know each other – long term bus-users. They also knew the driver and were exchanging news and views with him. There has been quite a turnover in drivers recently, however, so you don’t get to know them so quickly; I find, and there is less conversation, anyway, on the later buses. Most of them are very nice, there is only one grumpy one that I know. Has to be one, I suppose!
The coffee shop seemed different, too, at 10:30 for coffee instead of 12:30 for lunch. Much noisier people!! What a difference an hour or two makes.
It was Market Day, when lots of people come in from more countryside areas. Even so, the Market is not as big as it used to be. The Fishman (whose fish are excellent and as reasonably priced as it can be) was remarking how custom has dwindled. (Would this be due to the awful weather or because food has soared in price?). I just hope the market can keep going. One of our butchers closed recently, also a general store. The supermarkets have a lot to answer for.
Back to the bus. There is a fleeting view of some allotments on the way and it has, for so long now, been nothing but huts, poles and other equipment close to the owners’ hearts. Today however, I saw two intrepid figures toiling away. Signs of Spring? Also, my very reluctant daffodils have deigned to grace the garden. Golden glory! Not to be outdone some bright little winter pansies are waggling their heads in the patio tubs – despite having been covered inches deep in snow several times. They look so cheeky, as if to say “you can’t stop us!”
One last ‘random thought’. I took an open bottle of milk out of the fridge and it really made me laugh. It’s cap was on at a jaunty angle and it looked like a Frenchman’s beret. I expected to see a little baguette tucked under its arm!
You need to laugh at something – I’ve just had the gas bill!!
