In my own (beach) shoes… at the Dementia Congress, Brighton

“The UK Dementia Congress is the largest annual multi‐disciplinary dementia‐focused event and exhibition in the UK”

The largest event is a quantitative measure. But for many of us the Dementia Congress is also a wonderful gathering of friends and new friends – people coming together fired by a common purpose. It was lovely to see so many #dementiachallengers gathered together, many of us getting the opportunity to present at the 2-and-a-bit day event.

We were looking forward to our Early Bird Pecha Kucha presentation to kick off the main conference.

We started with an important debate.

You can link to Andrea Sutcliffe’s’s own blog about it here.

I am hoping to bring an important perspective to this. My 92 year old Mum (a.k.a @Gills_Mum) who has just moved into an Assisted Living Facility, has been chatting about the issue of poor care and the role of the media with her fellow residents. It would be very interesting to know their take on things.

This time last week I published a very hard-hitting and important  guest blog by Hilary Marmot. It has struck chords with many people and is very relevant to this debate, finding the precarious line between process and external regulation and trusting people to exercise reasonable common sense. Battling for person-centred, joined up care.

So this week I am taking the opportunity to lighten things up and put together a visual story, reflecting on my personal highlights.

I was very sad that my friend Ken Howard was unable to come to Brighton and I had promised to tell him all about it. Ken, who is living with younger onset dementia, struggles with reading and writing so I found a different medium to share the story and pick out a few bits that I thought Ken would particularly enjoy.

It is built in an App called ‘Steller’ and allows you to flip through pages of visuals. I must ask the Steller people how to find the html code to embed it properly.

In the meantime please click on the link under the picture to open the story book. Then click on the > on the right of the book to turn the pages (a bit like a Kindle).

Dementia Congress Stellar - cover

https://steller.co/stories/384525874944280120

I was delighted when Ken gave it the seal of approval
so I hope you enjoy it too.

Posted in Blogs, compassion, dementia, education, Gill's Mum, in my shoes, personalisation, safeguarding, social care, social media, well-being | Tagged , , , , , , , , , , , , , | 6 Comments

In the shoes of Hilary Marmot, Consultant Old Age Psychiatrist … Looking at How to get to Eden. Through the Ages.

Today sees the start of the Dementia Congress in Brighton, one of the highlights of the year for our #dementiachallengers - not least because we get the chance to meet up and collaborate! There is a great programme this year and five of us are looking forward to our Early bird Pecha Kucha session tomorrow morning which is a wonderful opportunity to kick start the main conference with a bang!

This evening there will be a lively debate. I am very excited about this because once again one of my favourite people in health and care circles is taking one of the polarised positions. Last year it was Dr Martin Brunet who managed a swing to his point of view of ‘Jon Snow ecstasy’ proportions. This year it is Andrea Sutcliffe.  As you may know, I’m a big fan of Andrea with our shared love of simple and effective ideas. The ‘Mum test’. The debate concerns highlighting bad practice in the care of people living with dementia.

It is a while since I have posted a guest blog and this is a special that I have been holding back to coincide with the launch of the Dementia Congress and add a bit of extra energy. Hilary Marmot writes from the heart. Her blog is not for the faint hearted. Regular readers may know that I have a personal sore spot around Continuing Health Care, which is very closely aligned to the problems Hilary explains so clearly in this latest episode of her less-than-shiny real world ‘Fred and Doris’ encounters.

As with all the guest blogs, these are ‘not necessarily my views’,  just faithfully transmitting the views of passionate people who are brave enough to submit them and trying to get a real mix of authentic viewpoints. So, in the spirit of sparking debate at the Dementia Congress and beyond,  we invite you to consider how things are really changing - for better,  for worse, in health care in terms of the impact on ordinary people’s lives.

How to get to Eden seventeen years ago 

(No guidelines or rules)

Hilary Marmot

Hilary Marmot

Doris, a very proud, independent, retired headmistress with dementia, is not getting on very well with her care home staff. They are all very kind but Doris always refuses absolutely everything, totally, adamantly, and very loudly. Food, company, help are all refused as Doris says she can manage perfectly well by herself, thank you. She says ‘Don’t be ridiculous’ and lashes out with any available weapon. The carers have all been on a course on personalised care but Doris is perfectly clear that she neither wants nor needs any care, personalised or whatever.

I thought Doris and the care home staff would all be much happier if Doris moved to a place where care was given by trained, specialist dementia nurses with years of experience. I phoned Doris’ husband, Fred, and he was pleased as Eden Place has had a good reputation. Fred’s pleasure was turned to delight when he discovered he no longer had to pay fees as Doris’s care was now ‘healthcare’ not ‘social care’ although the illness was unchanged.

I sent a letter to keep everyone in the picture and Doris moved to Eden Place that afternoon and they all lived happily ever after.

*********

How to get to Eden fifteen years ago

Legislation

http://hpm.org/en/Surveys/LSE_-_UK/02/Long_term_care_for_elderly_people.html

http://www.legislation.gov.uk/ukpga/2001/15/contents

“It’s not fair! There is no audit trail!”

“It is coming from the wrong budget!”

“If I pay that much tax I won’t be able to afford my yacht!”

Something must be done! How the patients suffered! What Doris needed  now, obviously, was a ‘process’. The multidisciplinary team should all write a wordy report about Doris and it should be written in a way a group of bureaucrats who wouldn’t know a patient with dementia if they mowed one down in their BMW could understand.

Myself, the social worker, the nurse and the occupational Therapist all went to see Doris and she told us to ‘Stop being so silly’ quite loudly and with real gusto for a lady of her age. Very impressive! They all compiled a similar report from the same case notes rather than the doctor spending more time with a tearful carer, the social worker supporting a man who needed a care package, and the OT seeing a man who was desperately bored and lonely. Meanwhile Doris develops a little sore area on her bottom which she hides from the carers.

A panel of bureaucrats costing a small fortune for their expensive time deliberated her funding and Doris moved to Eden Place and she lived happily ever after. Well, after her sore had healed that is.

*********

How to get to Eden ten years ago

Legislation

http://www.parliament.the-stationery-office.co.uk/pa/cm200405/cmselect/cmhealth/399/399i.pdf

http://webarchive.nationalarchives.gov.uk/+/www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_076288

http://rcnpublishing.com/userimages/ContentEditor/1373367392628/Continuing-healthcare-and-funded-nursing.pdf

SCANDAL!

“It’s a postcode lottery!”

The press are involved! So a very expensive group of senior professionals who presumably had met someone with dementia a long time ago and had obviously, totally forgotten ever working in the NHS, devised a national screening tool and assessment process. There was a press launch. Rumour was the food was really scrummy.

The multidisciplinary team now need to fill in an eighty page, standardised form detailing Doris in many ‘Domains’. The date, name and case notes number need to be added to every single bloody page including the one asking if she has had a sex change. Myself and the nurse and the social worker and the OT visit Doris and she tells us all to ‘Bugger off’.

We now have to fill in eighty pages about her memory test, her BMI, her attitude and concerns regarding her placement, her gender issues, several different scales and assessment scales that have all been highly validated by research procedures. That’s all right; we didn’t have anything better to do! We just write ‘ Bugger off ‘ on every page remembering to add the name, date and hospital number legibly on all eighty pages.

After second thoughts and threats from the management and the General Medical Council, a total revision the forms are presented to a panel that meets once a fortnight. After two attempts at presentation to fully clarify the situation to the costly panel, injuries to two of the care home staff, a pressure sore and some dangerous sedative pills Doris gets the care she needs in Eden Place and eventually lives happily ever after. That is, after the sore has healed up and the sedatives gradually stopped.

*********

How to Get to Eden After the NHS Redisorganisation.

Legislation

http://www.england.nhs.uk/wp-content/uploads/2012/10/ccg-phb.pdf

https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/213137/National-Framework-for-NHS-CHC-NHS-FNC-Nov-2012.pdf

http://www.pcc-cic.org.uk/article/national-framework-nhs-continuing-healthcare-and-nhs-funded-nursing-care

https://www.gov.uk/government/publications/extension-of-any-qualified-provider-impact-assessment

http://www.hscic.gov.uk/datacollections/continuinghealthcare

Etc etc. Ad Infinitum.

After six months of deteriorating in her care home, Doris hasn’t slept for 3 days. She screams nonstop.  The care staff just can’t manage any more. No one can get near Doris. She has refused all care for months. I have nothing to offer, all of the services that used to help have been cut, the day hospital is shut, the physiotherapist sacked, no response in six weeks to the urgent social work referral, rejected by the home treatment team, the eighty pages for NHS continuing care is totally impossible with fifteen new dementia referrals every week, no way we can do eighty pages, no question, no way there will be an inpatient psychiatric bed. Only one option left as all other services terminated.  No choice! Last resort! Nothing else left!  Doris goes to A&E !She causes absolute total chaos in the Kracksin Foundation Trust hospital from the moment of arrival.  She cannot sit down and paces for twenty hours out of twenty four, sleeping for no more than twenty minutes. She eats nothing, drinks nothing, and lashes out if any one comes near.  She is immediately and totally sedated completely and totally out of her brain with dangerous antipsychotics and valium derivatives before she punches yet another nurse or risks the care of another really sick patient. There is no choice. The home treatment team successfully fulfil their target by not admitting her to a psychiatric bed so the MH trust can cut beds and maintain a cash surplus of loads of millions in the bank. Selling the vacant beds to other boroughs with less efficient home Treatment Teams can generates cash. That is the aim of healthcare isn’t it? Placement is needed. Fred is distraught; he phones and begs for my help. I phone the social worker at the Kracksin Foundation Trust. She has applied to the large team now employed to fill out the forms for NHS Continuing Care because the process is so complicated and long winded that no multidisciplinary team can possibly manage them. The forms have been done at huge expense and Doris does qualify. All patients qualifying for NHS Continuing Care used to go straight to Eden Place but the new Commissioners set up the ‘Any Qualified Provider’ system, quickly renamed as ‘Any Cheap Provider’. Eden Place is not on the list as they cost too much because they employ psychiatric nurses trained to deal with dementia rather than someone who is prepared to do a really difficult job for a low wage. The Social Worker says “You have to phone my manager”, so I phone her manager. She says “I understand what you mean but you have to phone my manager” so between patients in the clinic I phone her manager and she says “I agree, but you have to phone The NHS Continuing Care team” so I phone their office and they say “You have to phone our managers” so I phone their managers and they say “You have to phone the commissioners”  so I phone the commissioners between patients and they say “You have to phone my manager” and so I phone that manager between patients and they say “You have to phone my manager” and they say that what I say makes sense but I have to phone their manager to give permission for a more expensive care home and I am now phoning that manager and they agree that I make sense but permission has to come from their manager and so I phone that manager and she says that she thinks  Eden Place are not meeting their targets on resuscitation skills training and they are not ‘Any Cheap Provider’ and I say that’s OK because Doris is ‘ Not for Resus’ and the bed she is in is twice as expensive. He says OK that had not occurred to him, she can go to Eden Place. Doris has now lost five kilos, has a large pressure sore and is suffering from side effects from the sedatives. Eden Place come to assess Doris and the nurses at the Kwidsin Foundation Trust say she is the most aggressive woman they have ever come across and when they try to wake her she is totally completely unarousable as she is completely sedated. I tell them she is a retired teacher. They say they didn’t know. Eden Place says ‘no, she needs an assessment in a psychiatric bed’. I can see their point. The HTT team say “No, she can’t have a bed, we need to sell those beds for profit. People with dementia are bed blockers.” I ask if they could phone their managers but they say their managers’ job is to prevent admission to psychiatric beds so I don’t bother and haven’t really got enough gaps in the clinic any way. The assessment nurse from Eden Place feeds Doris her lunch as the health care assistant from the Kracksin Foundation Trust hasn’t had enough training and experience to manage this. Doris has now been sedated in the wrong bed for ten weeks and has lost 10 Kilos. Better than Weight Watchers!

“Please help!” asks Fred.

I phone Eden Place between patients and luckily they need a favour from me. They agree to try and look after Doris if a 1 to 1 nurse is employed while she is assessed if I write a prescription for the dementia medication which has been stopped because the doctor at the Kracksin thinks it is a waste of money and as a result Doris has deteriorated significantly since the drug was stopped to save money. I write one letter to the commissioners and one to the providers to evidence the need for an ‘Off Cheap’ placement between patients and a prescription for a cheap safe drug, from the wrong budget (heinous Crime!)  Doris moves to Eden Place and they say “We don’t really need these sedatives or the 1 to 1 nurse and Doris puts on weight, her pressure sore heals, she is gradually withdrawn from the sedatives and the long term side effects of the antipsychotic sedatives have worn off.

She eventually lives happily ever after. Or does she?

Doris has just been reassessed as no longer qualifying for NHS Continuing Care by the specially commissioned team. “What will happen now?”, asks Fred.

Eden Place has half of the beds now empty as the excellent care if provides is too expensive. “Will it close?”, asks Fred. Eden Place has been privatised and numbers of qualified staff cut so that at night there is only one nurse for 24 patients. Doris is changed into her nightclothes at 5pm. “Is that good care?”, asks Fred.

“Sorry, I am not working here anymore”, I tell Fred. “I just couldn’t take it”.

We welcome your comments on this blog and the important issues it raises.

Posted in Blogs, compassion, dementia, end of life, Guest blog, housing, personalisation, safeguarding, social care, TLAP - Making It Real, well-being | Tagged , , , , , , , , , , , , , , | 2 Comments

Maternity – how we are working together to deliver a better experience

The last few months have been very exciting, linking in with a passionate community of people wanting to make a real difference in ‘maternity experience’, using the  Whose Shoes? approach to quality improvement. This is what we have been up to.

We are running a pilot with five workshops across London, in partnership with the NHS London Strategic Clinical Network. The project is inspired and led by Florence Wilcock, a Consultant Obstetrician and Divisional Director at Kingston Hospital and with wonderful support from Kath Evans, Head of Patient Experience at NHS England.

From the beginning, this project has had lots of life – new life!

Two people came along to our final ‘Dementia Friendly Communities’ workshop in Kent to understand the Whose Shoes? approach better and see it in action – or rather participate because there is no such thing as observing one of our workshops – everyone has something to contribute; the more perspectives, the better!

I love the enthusiasm and dedication of this team!

Florence is quite new to Twitter, but has taken to it like a duck to water! Her love of her job is infectious and tweeting like this has huge benefits for the NHS and breaking down stereotypes.

Who knows how many young people Florence might inspire to follow her career path?

And a bit of much needed quirkiness

Twitter is brilliant for drumming up a bit of energy and before long I was tapping into my own local maternity fraternity (or sisterhood?) in the Midlands. I had some enlightening meetings with wonderful people to carry out further research – as well as chatting to lots of ‘service users’.

Everyone has a birth story – recalled in huge detail, which just shows how very important it is to get it right!

Gill Phillips with Jane Pollock, a.k.a @midwife_jane who invited her along to the Open Day

Gill Phillips with Jane Pollock, a.k.a @midwife_jane who invited her along to the Open Day

I visited George Eliot Maternity Hospital Open Day and had a really insightful morning. Once again I was hugely impressed with the commitment and dedication of the team.  I will let the pictures tell the story, including a little Flipagram made by the hospital team.

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And there was a ‘name the kangaroo’ competition to name the George Eliot Maternity mascot – and I won it! We won a family ticket to Twycross Zoo and it was a real pleasure to take my young friend Laura and her family last week at half term.

Laura has played a big part in this project, bravely sharing her maternity story so that others can learn.

https://twitter.com/New_Possibiliti/status/523222066557112320

https://twitter.com/WhoseShoes/status/523396734534549504

And it looks as though we will be doing a webinar

The scenarios for our maternity project have been co-produced in order to trigger the conversations that really matter.

All sorts of people have been involved; basically anyone who has an involvement in or a view about looking after women and families during pregnancy birth and early family life.

Choice is an important theme – and just how individual this is

This, as an example, was one spontaneous tweet chat:

It is always exciting to find new topics and new perspectives – and it just shows how dedicated people are to be tweeting late on a Saturday night.

The subject of ward rounds immediately hit a chord.

And then Florence arrived, our fave #ObsOnCall arrived :)

And then we got into patient records

And soon it was time to prepare for our first event.  

And we kicked off the project with our first workshop in Kingston.

And inevitably some new people were lured onto Twitter ;-)

Social media, informal networks and the Invisible Hordes are a
BIG part of the story

And of course the important bit is the feedback and what happens *differently* as a result of our workshops

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The feedback is extremely positive so we are all heartened by the possibilities.
Wonderful discussions. Wonderful pledges. Wonderful cakes!

Our next session is in Lewisham on 21 November. Places are at a premium but a few spots will be kept for ‘external’ people so please get in touch if you would like to know more.

 

Posted in personalisation | Leave a comment

A little bit of magic in Scotland … and planning the ‘hairy biker’ tour :-)

Ken Howard and I had been planning our trip to Scotland for a long time. Originally we were thrilled because our abstract was accepted as part of the popular ‘Involving people living with dementia’ session at the 23rd European Alzheimer’s conference. However a fantastic response on social media meant that we were invited to do a week-long programme of events, including a radio interview and Whose Shoes? workshops. Huge thanks to our wonderful Twitter friends who made us incredibly welcome.

The conference was great. We enjoyed the keynote speeches.

Gill Phillips, Julie Christie and Anna Tatton.

We enjoyed hearing about the Glasgow declaration… and even signing it with some friends.

We enjoyed meeting long standing Twitter buddies such as Julie Christie and Anna Tatton. Julie who wrote one of the early ‘in my shoes’ blogs.

A lot of the ‘magic’ of big events happens outside the formal framework and planned activities.

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Ken and I found a lot of magic last week. Not least in the Harry Potter train system. We seemed to spent a lot of time at Anniesland looking for platform 9 and three quarters…

We were staying with a lovely friend and really appreciated seeing something of the City on the journey in rather than just staying at the conference venue. We had a lot of fun and even recorded a couple of ‘live interviews’ passing the time while we were waiting for trains. I might add one as an ‘audioboo’ if I get a bit of time ;-)

We also learned loads about Dundee Utd Football Club… and made huge progress with the embryonic ‘Hairy Biker Tour of Scotland’

More about those things later… but to whet your appetite for Ken’s tour, here is the film he made about re-building his life – and his beloved Harley – at a storytelling weekend we attended together, with brilliant support from Patient Voices.

We started our week in Scotland with an interview at IRISS FM who had invited us to record a podcast.

I will add a link when it has been finalised as Michelle started by interviewing us in their ‘Creative Quarter’ in Glasgow and then tracked us down again at one of  our Whose Shoes? sessions later in the week  and interviewed some of the lovely participants.

IMG_8380
Ken liked the poster outside because it was visual and easy to read.  I learn a lot by seeing things through his eyes – and often they are just the same as mine as I generally find visual stuff easier too!

The Alzheimer Europe conference itself was a hive of good practice, good intentions, inspirational speakers but most importantly PEOPLE – people coming together who really care.

I was thrilled to introduce Ken to other inspirational people living well with dementia, especially my friends from ‪#‎23AEC‬ in Malta: Helga Rohra, Agnes Houston and Nina Baláčková.

We had very fond memories of a bulging-at-the-seams workshop in Malta with Shahana Ramsden… and warmer climes!

And inevitably there were some absent friends

Our presentation was on the first day – always a good thing in my book as I feel sorry for the people on first thing after the Gala Dinner.

We had planned it carefully … as you do for such things. Ken and I had spent several hours in the pub pulling it together…

  • We had also spent a long time with the tecchies in Glasgow making sure Ken’s film and all the embedded audios were working…
  • The room was packed…
  • Helga Rohra, Chair of the European Working Group of people with dementia,  had given us a really welcoming introduction…

SO. What could go wrong?
The speakers were not turned on!!

I think our friendship shone through as Ken and I ad libbed our way through the session and it was wonderful looking around at the audience of people seeing Ken as a shining example of living well with dementia.

I have a small role … passing the salt when Ken can’t reach it (Ken’s lovely quote about the type of support that works for him). A privilege indeed to get such an opportunity. And have fun at the same time.

And, of course, it works both ways – Ken has a MUCH better sense of direction than me.
I am not sure I will be let loose on my own in Glasgow.
And Ken is much much stronger! ‪#‎heavybags‬

Helga has a fantastic ability to juggle many things, and to be incredibly inclusive – like the host of one giant party.

Helga had written notes about each of us but her ‘live’ introduction blended it in a really engaging way. At the end, she even thought to take our name badge out of its plastic container and hand it to us as a souvenir. Thank you Helga! :)

Zoe Harris and her brilliantly simple Care Charts.

Zoe Harris and her brilliantly simple Care Charts.

There was an excellent display of posters at the conference. Inevitably most were very academic. Ken had no hesitation in awarding his ‘best in show’ award to Zoe Harris, Care Charts for a very simple reason…

So like everyone else, we were tired but exhilarated at the end of the conference…

But we surprised ourselves with new energy levels to catch the early morning train to Dundee.

Our community based event was very generously hosted by Dundee United Football Club, through the wonderful support of our friends Ang and Steve Thompson.

… and, completely by chance,  Ken and I shared the long journey with Tommy Whitelaw!

As always, it was lovely to receive little tweets of encouragement from our friends ‘back home’

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The Dundee event went well and we had a little celebration afterwards.

And we were happy. It seems people are often happy in Dundee – thank you Ang Thompson for sharing this lovely video

.

And our final event was in Glasgow. This time it was not dementia specific – more about exploring interest in further developing Whose Shoes? as a tool to support the Scottish agenda, particularly self-directed support. It feels exciting as some of the most innovative use of the tool, ever since the early days, has been in Scotland.

It has been lovely to link up again with the Social Care Ideas Factory and I am hoping to run a workshop at ‘We Chose 2 Climb’, an international event that is taking shape for next Spring.

We met with friends – new and old. We made new connections. We spread our key messages about valuing people and working together for positive change.

We all felt we had started something special in Scotland and are looking forward to seeing how it grows.

We also made significant progress with the ‘Hairy biker tour’ :)

Thanks to our lovely friends in Dundee and Glasgow, we have a beginning…

and an end…

And we have made good progress with filling in the ‘middle’ bit since our return… but still lots to do!

And now we have a couple of theme tunes!

And we had FUN! #dementiachallengers rock on!

https://twitter.com/WhoseShoes/status/526325909780193280

If you would like to support Ken’s ‘Hairy biker tour’ in any way,
please get in touch!

Posted in Blogs, co-production, community engagement, compassion, dementia, in my shoes, personalisation, social media, TLAP - Making It Real, well-being | Tagged , , , , , , , , , , , , , | 4 Comments

The ‘day centre people’ decide to party … at night! #dementiachallengers

#Dementiachallengers are breaking down stereotypes around dementia and challenging a few assumptions and a bit of stigma along the way.

I have written several blogs about our project in West Kent, which was inspired and delivered by passionate local people, particularly Sandra Springett, Dianne Aslett, Alison Waters and their colleagues. Unsung heroes, doing good work day in day out, but who wanted to push the boundaries a bit.

We have been lucky to find that local Age UKs, local Alzheimer’s Society, Kent County Council, the NHS, Dementia 4 Schools, Catch 22, community and voluntary organisations and many others have been happy to work together without worrying about anything other than the people we are all serving. Refreshing.

Developing collaborative networks is rewarding and fun!

We were commissioned to deliver 16 Whose Shoes?®  workshops … and we are enjoying spoiling the statistics of any ‘tick-boxers’ who might be lurking behind the scenes as we have now delivered 22 events … and counting. We got funding to do graphic recording of one event… but, through the talents and enthusiasm and generosity with their time of local people, we managed to graphically record ALL our sessions. Community capacity building. Taking ownership.

It is wonderful to get people like Zoe Harris actively involved – Zoe cared for her husband through many years of living with dementia and has developed the multi award winning Care Charts as a direct consequence to their own lived experience:

So where have the extra Whose Shoes?®  ‘legacy events’ popped up from?

Well, we set out to trigger light-bulb moments and to light fires. Too many projects have a beginning, a middle and an end. But projects to raise awareness of dementia should only really have a beginning – and then keep having an impact, because the people involved are deeply affected by something that stays with them. And then they too want to do something to help – and so slowly the fires spread.

A big part of the story is to wait and see what people want and see if we can provide it.

So we were asked to hold a large event in East Kent to help family carers

So we have had unplanned events. Similar to the carers,  the Women’s Institute attended our community sessions and then asked us to run events for their members. If the W.I get the bit between their teeth about an issue, it has to be a good thing!

And, as the superb Dementia4Schools project has proved, there is no better to change attitudes than by getting young people on board. So Sandra and her colleagues linked up with Catch 22 charity and ran sessions for young people. This led directly to young people volunteering to help people living with dementia in day centres and other very rewarding inter-generational outcomes.

And of course, the young people did their own graphic recording ;-)

Next was a large event in Essex, commissioned by people who had seen what good and bad dementia care felt like – and wanted to assemble a large group of very mixed perspectives to see how things could improve.

They hired Essex County Cricket Club to provide a memorable and welcoming environment. As you do.

There was a really lovely buzz as the event got underway

But perhaps most excitingly … this weekend there was a party for people living with dementia who only normally ever meet during the day.
It almost felt clandestine!

So here are some lovely photos and video clips posted during the party – wonderful to see people of all ages having fun together … and many of them happen to be living with dementia.

So this blog is just a little round up of some of the growing legacy of our West Kent project.

Look out for more as we are planning to party more, not least with the club that I have been proud to champion since their defiant beginnings… The Healthy Living Club ;-)

Please DM me at @WhoseShoes or via the blog if you would like a copy of the end of project report… but be warned, it is rapidly becoming out of date because the end of project was more a beginning.

Last week, I did a presentation at the “Quality Outcomes for People with Dementia” conference in London.

In a week’s time I will be presenting with Ken Howard at the European Alzheimer’s conference in Glasgow. And then, in November, at the Dementia Congress in Brighton.
All of these are wonderful opportunities to talk about our work and a huge privilege as well as a chance to meet more wonderful people and catch up with many friends.

But it is the ‘grassroots’ work and seeing Barbara and Pete and Dougie dancing the night away that make me keen to get me up in the morning.

_DHP5967 dancing with bunting

Posted in Blogs, co-production, community engagement, compassion, dementia, in my shoes, personalisation, TLAP - Making It Real, well-being | Tagged , , , , , , , , , , , , , , | Leave a comment

In the shoes of… | Gill’s Mum. Keep Calm and Carry On.

Keep calm...Thank you to all our Twitter friends for the lovely supportive messages we have received over the last four months while Mum has been staying with us, following an accident in which she sustained a fracture to her lower back. It has had a big effect on her mobility and has been a shock to all of us, wondering what to do for the best. Anyway, things have moved on and we have sold Mum’s house and are looking forward to a new chapter in her life. Her resilience amazes me – she is a product of the original ‘Keep calm and carry on’ generation, with many lessons for younger people, I think.

We have inevitably been sorting out all Mum’s stuff, ready for the ‘downsize’. I have included at the end of the blog some of my tweets as I went about the final stages of this painful process…

Well, I suppose it had to happen sometime. I have had to sell my lovely old house and shall be an inmate – sorry, a resident – in an assisted flat!

It is a really nice flat which I now own with all you could wish for. The other residents are very nice and friendly. There is a lovely general lounge and dining room, where they provide lunches and teas at extremely reasonable prices, if you don’t feel like doing it yourself.

I just didn’t want to move. I had my own little routine where I went out on the bus (the little friendly bus!) in the morning, visited the library, had coffee and talked to people in my favourite café and did some shopping.  I suppose I shall still be able to do this but I shall really miss the little bus.

The reason for all this change is that I had an accident and can’t stay in my own house any more, without help, and these new flats, just built, seem to be the answer. They are right in the centre of town, near all the places I want and I also have a friend who recently moved in!

Getting moved, however, is a nightmare! There is so much to do and so many people who have to be told. In fact, it is a double nightmare! So many people to be told AND I don’t do things online! I am old-fashioned, as many people are at my age. I know very few people with computers or mobiles. At least I have a mobile!

Changing from a fairly big house to a small flat is awful – you just have to be absolutely ruthless and throw away things you would really like to keep. My family are wonderful, helping me enormously but in the end I have to decide. I’m sure there will be things I regret but it has all happened so suddenly. I haven’t had time to think. And I don’t like making decisions anyway!

Some of Mum's shoes...

Some of Mum’s shoes…

The latest in decisions is quite funny really. I was looking at all the lovely shoes I used to wear before I was reduced to basic Hotter, wider fit! Pretty shoes and sandals with quite high heels and all mostly new! I hope they can be of use to someone and will be enjoyed!

Now lots of things are being delivered here to take with me. Things to make life as easy as possible in my new home. There is a walking frame with four wheels to make walking easier and to hold a hand bag, carry books etc. Very useful and not likely to trip people up as the three wheelers could. Also a frame for the toilet to make that easier too, and a stool to sit in the shower. All these things have been recommended by Laura, the daughter of one of Gill’s friends, whose job it is to recommend them and to order them for delivery. She knows her stuff!

While I was looking in my old sideboard to see what to get rid off, I came across lots of things I had forgotten about. There was an old cribbage board made by a ship’s carpenter, which my father played on with me. Various glasses, swizzle stick for cocktails and a cocktail set that we hadn’t used for ages. And a very useful bottle opener. Sounds very alcoholic, my sideboard. That is what sideboards are for!!

My father used to bring home wine from South Africa and other places in big stone kegs. He was a Chief Engineer in the Merchant Navy. I remember one was Madeira – “A glass of Madeira, my dear!”, regardless of the time of day. Very popular with our neighbours at the time. Life was so much simpler then, I suppose.

Please post comments to encourage Mum as she makes this big step today into the unknown…

 

Posted in Blogs, compassion, Gill's Mum, Guest blog, personalisation, well-being | Tagged , , , , , , , , , , , , | 7 Comments

Sharing global social media stories – in Puerto Rico and Australia!

Today / tonight / yesterday Helen Bevan and Mary Freer give a talk on using social media for transformational change. The talk is at the #APACForum in Melbourne and who knows exactly when it is, it is all so confusing with the different global clocks! The more important thing is that this will be a significant session in terms of the global lessons that these two talented change leaders will share … and I am honoured to know them both!

Helen @HelenBevan is Chief Transformation Officer, NHS Horizons Group at NHS, Improving Quality and Mary @FreerMary is a maverick change agent in Australia … so just the sort of alliance I find fascinating and rewarding.

Img_6418 with Mary FreerI met Mary Freer@FreerMary when she attended one of the Whose Shoes? workshops Kate Swaffer and I ran in Adelaide

… and we even had a very nice lunch in a local restaurant ;-)

Kate and I gave out Mary’s postcards promoting Change Day Australia – and my (spot the koalas) picture is even included in Mary’s new crowd-sourcing video for Change Day Australia, 2015:

So hearing that Mary and Helen were doing this important talk made me think back to the wonderful invitation Kate Swaffer and I got to present our own social media story at the Opening Reception of the World Alzheimer’s conference in Puerto Rico in May.

I shared some of the story via tweets at the time

But I also took lots of photos and videos that I have not previously published.

A group of us have been experimenting with different social media formats for story telling…

I wanted to try something new and chose Storehouse as it claimed to be easy to upload up to 50 photos and videos – but I couldn’t make the videos work so have included a couple here via WordPress!

I particularly wanted you to experience the vibrant almost haunting music played by the band of students from the local Puerto Rico University at the Opening Ceremony:

And secondly, here are two short videos showing the beginning of our talk…

.. and end of our talk (we didn’t get the middle!)

- but other than that, the story is here on Storehouse. Please click the link!

VERDICT: Storehouse was very intuitive and it was good fun building it on my iPad, importing photos and switching them round to build the story – but not being able to include the videos was a pain!

Please take a look at the story on Storehouse and let me know what you think! :)

Posted in Blogs, dementia, in my shoes, personalisation, social media, well-being | Tagged , , , , , , , , | Leave a comment

Co-producing inclusive, vibrant #dementiachallengers events in Scotland

Well the invisible hordes are coming out of the shadows and becoming real people… very supportive, creative passionate people. And they are bringing their own ‘invisible hordes’ in their wake…

I would like to include here a lovely film made by Helen Bevan about how she sees the future of health and social care as we all find ways of coming together for transformational change. I like to think that the ‘Scotland story’ in this blog and other recent developments in the energy and connections being made around Whose Shoes? are a living example of the kind of 21st century connectivity Helen talks about. I enjoyed a lovely weekend with Helen and some other inspirational people making the original film and it is great to see how seeking feedback from ‘critical friends’ has helped Helen turn it into this powerful and somewhat magical vision:

I am learning to go with the flow. To find the energy, local energy – because there are so many great people out there who just want to make things happen for their own communities, people they care about.

Take Scotland as an example

I am really looking forward to presenting at the European Alzheimer’s conference in Glasgow.

The conference is Monday-Wednesday 20-22 October so it occurred to me that we could perhaps run a couple of Whose Shoes? workshops in Scotland on the Thursday and Friday. I have some existing great links in Glasgow and Dundee so they were tentatively suggested … and Twitter has taken over and filled in the gaps.

Before I could bat an eyelid, we had somehow co-produced a flyer for a generic event in Glasgow. And there has been fantastic interest. Huge thanks to the proactive approach taken by fab Yvonne and Anne-Marie at Dementia Scotland Co.

Similarly, we have crowd-sourced some key themes…

And it looks as though I have hooked up with just the right people. Making dementia training  fun.
Fun? – yes because that is how people engage, remember and are fired up to DO something.

And Scotland just seem to run with things!

The Dundee event has been an amazing example of Twitter at its best.

My friends in Dundee have been promising to invite me for some time so this was the perfect opportunity. There has been some truly wonderful energy!

We want to make the events diverse and inclusive

I don’t know who Rob is … and it doesn’t matter. The ‘invisible hordes’ are at work…
And the momentum builds as fab passionate people with shared values come together for transformational change

TOWICC!!? TOWICC!!? … Is this some strange Scottish ritual?

My mind goes wild trying to guess what it stands for, like a mad Christmas game of ‘Absolute Balderdash’. But the truth is that I don’t really need to know; I just need to let these amazing people think through their local issues and networks and work with them to see how best my Whose Shoes? approach can help them achieve the outcomes.

This interplay on Twitter is like a mini Whose Shoes? session 

… AHPs talking to a consultant surgeon, mixing in a carer or two, some innovative providers – people just talking as people, irrespective of formal roles…

And slowly they are bringing more people in – tapping their own networks and knowing where the local demand will be… policy people, medical students…

And Maureen set to work doing wonderfully clever stuff with my thistle! So to speak…

So now we have an ‘emblem’. So far so good…

Well, the conversations were very productive indeed. Mainly behind the scenes in lovely proactive Dundee…

And then Ang and Stephen Thompson at Dundee United Football Club come up with the most amazing offer - a venue for the event!

I am delighted that the event will be held in such a wonderful “social” setting rather than a medical centre as this supports all the key messages we are trying to convey about living well with dementia, maximising the assets of local communities.

I can’t wait to meet the wonderful people of Dundee including a singing group and a football reminiscence group – bringing stories alive!

So I am very excited about the forthcoming ‘Whose Shoes? tour’ of Scotland. I am excited about introducing my fellow ‘Southerners’ Ken Howard and Dorothy Hall.

I am excited about meeting everyone and making a difference through our collaborative events.

Not to mention the inevitable tweetups … ;-)

So the flights are booked. The potatoes are boiling…

Yes, it is all coming together nicely.
Except a pair of suitable tartan shorts for Ken.

 Tartan shorts for Ken. Can anyone help? ;-)

Posted in Blogs, co-production, community engagement, compassion, dementia, education, in my shoes, personalisation, social care, well-being | Tagged , , , , , , , , , , , , , , , , , , , , , , | 1 Comment

In the shoes of… | Gill’s Mum. A fabulous wedding. And a new life ahead…

Last week, our eldest son got married!

Mum, a.k.a @Gills_Mum, has been doing quite a bit of writing recently and I thought you might enjoy her ‘take’ on Abi and Andrew’s wedding … and also an update on how Mum is getting on…

Andrew and Abi wedding procession - YvonneWhat an amazing week. Starting with the loveliest of weddings where everything was beribboned: the invitations, church pews and orders of service were all decorated with cream ribbons and pink and cream flowers. Not overdone, just very pretty, The bride’s dress was gorgeous, with a swirling short train and the bridegroom (my grandson), his best man and all the ushers wore grey tailcoats with unusual, striking waistcoats. The guests all played along with lovely dresses and one or two super hats. The church was centuries old, Norman in parts and the vicar, who was retired, came back specially because he knew the family. His sermon was marvellous too. Funny and thoughtful and not at all at the usual dry-as-dust, send-to-sleep sermon at so many weddings.

Wedding - Andrew & AbiThe reception was held at a very old converted manor house hotel attached to a converted barn. The living accommodation was in the original house  – some with four poster beds! The actual reception was held in a marquee in the lovely grounds which, despite a visit from a near hurricane, stayed firmly on the ground and no one got wet!

Wedding Img_6599cWine flowed and the speeches were very funny, despite having to contend with the aforesaid near hurricane. The tribute to the three lovely bridesmaids nearly got wiped out!Wedding cake

A very enjoyable wedding breakfast (more wine, of course) followed, then dancing and later a hog roast when more guests arrived!! It was so lovely to spend time with family and old friends, including Theresa who has been  friends with Gill since they started secondary school aged 11 and used to spend so much time at our house when they were young. Another of Gill’s friends, Rosemary, made the wedding cake – it tasted as good as it looked! Eventually we all went to bed, tired out but immensely happy!

The second half of the week was quite different. It brought me down to earth again! I went to a lunch given by the people from whom I am buying a sheltered accommodation flat. I have been staying with Gill and her family since I had an accident three months. They have looked after me so well and I am feeling much better; now it is time to move on.

I met the people who are living in the flats and found them very nice and friendly. There is a dining room where lunch and tea are served every day, if required, at very reasonable cost. There is also a comfortable lounge, where they seem to hold lots of interesting activities, and also a pleasant little garden area. People were sitting in the lounge enjoying their coffee or tea and chatting to each other.

Mum - new flat Img_5053cEverything is brand new, having only just been built and there are many helpful aids, such as bars along the walls to give support if needed. The flat is fairly big, as these places go,  with the window giving onto a little patio – the only flat like it, it seems! All I have to do now is sell my own house and move in, and I am even being helped with this.

Big decision ahead though. What I can reasonably take from a big house to a small flat is not easy. Have to be quite ruthless, I suppose and I am not one for making big decisions!

Here goes!!!
_______________________________________________________

Please post comments, tips or messages of encouragement – Mum will love them :-)

Posted in Gill's Mum, Guest blog, health, housing, personalisation, well-being | Tagged , , , , , , , , , | 13 Comments

Let’s harness the power of “invisible hordes” – together we can build a better future!

About a year ago, Helen Bevan compared me to Lois Weisburg.

And, when I did a bit of research to find out who this lady was, I was at first flattered and then intrigued … and then felt a bit of fraud. Lois was good at building connections and informal communities and, so it seems am I. But Lois managed to do this in the middle of a small town by talking to people she met whereas I have the infinite possibilities of technology and social media, and in particular the magical tool which is Twitter.

It is true that I am absolutely fascinated by making connections and have written about this before. I love meeting wonderful people, and equally pleased when I manage to connect other like-minded people and see them building their own relationships and collaborations.

This ability or gift, however you like to describe it, has led to the most amazing opportunities – but top of the list being the wonderful experiences I have had with my Australian friend Kate Swaffer (we met – you guessed it – via Twitter and blogging) culminating in a Whose Shoes? mini tour of Australia, December 2014,  and co-presenting our social media story at the Opening Reception of the World Alzheimer’s conference earlier this year.

So people ask how this happens – particularly people who don’t ‘get’ Twitter.

So this is what has happened in the last few days…

Thursday and Friday were fascinating days for me and seemed a microcosm of what is happening on a much larger scale in my life. Thursday was a series of face-to-face meetings; Friday was a very similar experience but the connections came more through telephone calls and social media.

I think to put my musings in context, I need to link at this point to ‘Invisible Hordes‘, a wonderful blog this week by Richard Martin, @IndaloGenesis .

I have found this blog so fascinating it is almost haunting. It is set in a recruitment context, but to me applies to every encounter that we have. When you consider that the person that you meet is not just one person with unique skills, knowledge and attributes, but the door to their own individual and unique network of friends and connections, it is truly mind blowing. This is very much the reality for all of us, if we let it be and if we are equally prepared to share our own ‘invisible hordes’: the magic only happens through true reciprocity.

I think these thoughts and feelings have been highlighted for me because I have recently discovered a whole new community, I almost want to call it a family, of people who are passionate about maternity services.

Apart from having three children myself (an ‘expert by experience’, albeit a while ago!) this is a whole new area for me, but oh-so-familiar in terms of key challenges around all the things that I believe in and work so hard for: person centred approaches, dignity and respect for all and compassion and humanity and choice that empowers people rather than exploits vulnerability. I have been very honoured to be invited to write a chapter about this, which has now been accepted in the wonderful forthcoming book edited by Sheena Byrom and Professor Soo Downe “The Roar Behind the Silence: why kindness, compassion and respect matter in maternity care”

I will aim to write more about our Whose Shoes? maternity project when the time is right, but that is not the subject of this particular blog. It is more about the networks.

And as I sat in quite a small meeting at NHS England in London, it was as if the whole Twitter community was in the room.

There had been a huge buildup and the small team I am working with are using social media really well to build energy and bring passionate people together. This is just a flavour – honestly!

We even got sent some wooden clogs from Holland!

I am now in Twitter conversation with the Head of Midwifery in my local hospital in Coventry – indeed it looks as though we will meet! :)

It is fantastic to find there is so much passion and good practice around. Twitter is bringing us together in a web that is as rich and as beautiful as any spider could weave in the sunlight.

So, it is still only Thursday lunch-time and next I was meeting a school friend for lunch. I couldn’t believe the coincidence that her eldest daughter works with the people I had just met with and had come to give me a hug before the meeting started. The most senior person in the room had been to her wedding only a couple of months ago and had met my schoolfriend, the bride’s mother, and spoke highly of her. I couldn’t believe the coincidence, and again my mind went wild reflecting on how all our different personal and professional connections interplay.

It reminded me of the LinkedIn statistics where, as you link with each new person, it shows your own network expanding exponentially. Apparently I have…

  1. (1448)1st Connections
  2. (398,205) 2nd Connections
    and it seems you now have to pay to see how many 3rd connections ;)

And then in the afternoon I met Julian Stodd, a meeting that seemed long overdue as we have been fascinated by each other’s work for a long time. The timing on this day, when I was reflecting so intensely about connections, seemed extremely appropriate as Julian is as curious about networks as I am. We had met through Twitter but particularly through our blogs. But even that reinforced for me just how personal these matters are. Julian, as I suspected, is it very interesting guy, a real thinker and highly creative.

But for me it is his lovely pastel watercolour images that stay in my mind and bring alive the actual content.

Julian’s gold clouds, grey shadows and key words are a wonderfully simple and consistent form of communication.

I frequently post them to my Pinterest boards, and that in itself feels hugely symbolic. Those little pictures provide the gateway to the deep thinking that lies in each blog in the same way as the graphic recording that we frequently use at my own Whose Shoes? workshops.

Graphic by New Possibilities

Graphic by New Possibilities

I feel very fortunate to have the freedom to be able to be able to have such pleasant, thought-provoking meetings in the sunshine; but I’m sure meeting face-to-face builds new possibilities and is almost bound to open new doors. As our networks come closer together, we find new ways of collaborating to pursue our shared purpose of transformational change.

And Julian even let me try his brand-new GoogleGlass!

As you will read in his blog, he was like a kid at Christmas. I was very flattered that, with full directional support,  he found his way down Euston Road to meet me as it must have distracted him from the mission in hand. ;-) My first reaction was to think he had a specific sight problem…
 

Meanwhile I had a lovely phone call from someone I really respect in Wales. Again I will blog more about this when the time is right, as I suspect it will be by the end of this year. Suffice to say that this lady is not on Twitter but builds fantastic co-production networks through more conventional channels. Perhaps she is the real Lois Weisberg? However, she does use email, whereas Lois just had the fantastic capacity to get out and talk to people. Perhaps we should all do that more.

But, as the end of the week came, I sat back in awe and watched as the ‘Invisible hordes’ appeared from all directions, but mainly Scotland…

I put a tweet out a week ago and it has now turned into a mini Whose Shoes? tour of Scotland, building on the fact that I will already be in Glasgow with Ken Howard and other friends, presenting at the European Alzheimer’s conference in October.

Thanks to my wonderful mentor, Dr Sam Majumdar, I have learned to ‘go with the flow’, an approach that really worked in Australia where harnessing local energy (my friends Andrew Coulson and Kate Swaffer, but also Alzheimer’s Victoria, TACSI and other organisations) led to vibrant, well attended events that I could never have put together myself. It feels as if Scotland has the same energy, Harnessing ‘local assets’ and letting people lead the way is central to co-produced solutions and all of my work.

I have actually done very little other than to say I am keen.

I have been overwhelmed by the way people have jumped into action, offering help and support and wanting to experience the work we do -  getting people talking together… and building connections!

I have even been sent a selection of shoes and boots and suggestions for tartan shorts for Ken! I have been posting them diligently on my Pinterest boards.

The most rewarding and encouraging  thing has been that, not only has this support and enthusiasm come from my friends and supporters – real life friends like Sam, Maureen, Sandra and Agnes and ‘Twitter friends,’ but from their networks – the ‘invisible hordes. People I had not heard about a week ago are offering significant support with the project and I am in awe about how these things work and am very grateful!

WS benches Img_4850cThere have been a crazy number of tweets. You will be relieved that I will not attempt to capture them all but I love seeing the growing connections between different groups, breaking down barriers and silos. My Whose Shoes? tool has the different groups represented by different colours. Perhaps they are sitting on the different benches (the photo was taken in Scotland).

But we want to bring them ALL round one table together. As equals.

“It is time to add all the colours to your dream!” – Sam Majumdar

So it is time to apply the ‘Invisible Hordes” thinking not just to the recruitment process, but to life itself.
It will be SO much richer for it :-)

Posted in Blogs, co-production, community engagement, compassion, dementia, education, health, in my shoes, personalisation, social media, TLAP - Making It Real, well-being | Tagged , , , , , , , , , , , , , , , , , , , | 6 Comments