Philly Hare
@phillyhare
Followers
579
Following
1,398
Media
14
Statuses
192
Now retired in the Outer Hebrides, love walks, runs, art, felting, sea swims, wild nature - still passionate about dementia justice, voice, autonomy
Joined January 2010
Don't wanna be here?
Send us removal request.
Explore trending content on Musk Viewer
Adalet
• 229495 Tweets
#4MINUTES_EP7
• 110778 Tweets
Chester
• 109053 Tweets
ベイマックス
• 108916 Tweets
Merchan
• 87219 Tweets
Jean Carroll
• 67100 Tweets
Eagles
• 66452 Tweets
#2KDay
• 65265 Tweets
HAPPY BIRTHDAY TANNIE
• 54862 Tweets
#dilanpolat
• 42720 Tweets
Franco Escamilla
• 36228 Tweets
Ayşenur Ezgi Eygi
• 33350 Tweets
Packers
• 29860 Tweets
#CristinaMostraElTitulo
• 22644 Tweets
Ganesh Chaturthi
• 14787 Tweets
Bafana Bafana
• 14541 Tweets
Tesehki
• 13943 Tweets
Barcola
• 13148 Tweets
Chaine
• 12323 Tweets
Alina Habba
• 10927 Tweets
Go Birds
• 10887 Tweets
Skylar
• 10060 Tweets
Woke up thinking about
@WendyPMitchell
. Not even 4 months since she left us but feels like forever. The world is definitely a little less bright without her wonderful humour, intelligence, bravery, kindness. Sending love to all who miss her x
5
6
63
Thread: 1/11
10 Questions for
@alzheimerssoc
@KateLeeCEO
and all AS Trustees in relation to its recent terrible ad:
3
21
45
Just complained to the ASA
@Asa_official
about the terrible
@alzheimerssoc
ad.
In my view this breaches many aspects of Code 4 "Harm and Offence"
It was very simple - go to
The more of us who do this, the more likely it is that the ad will be pulled.
10
25
44
How lucky am I to live in this beautiful place, where I can watch a pod of orcas passing within a mile of my cottage.
#isleoflewis
#OuterHebrides
#whalewatching
8
2
43
It's
#FridayFollow
Day again... and I've recently set up my own personal Twitter account.
If you value following me, please repost this tweet and recommend to your own followers so I can build up my account.
Many thanks .. and happy Friday!
5
25
43
Just a week to go 'til our new book comes out!
@Innov_Dementia
"People with Dementia at the Heart of Research" explores how research was co-produced through The Dementia Enquirers Model
Pre-order at
1
15
38
@Innov_Dementia
@JKPBooks
@TNLComFund
A big high-5 to my fellow co-author Rachael, to all those who helped us see the
@JKPBooks
book to fruition - and to the hundreds of ppl w
#dementia
who are showing the world how they can (and should) do (and even lead) research.
2
14
37
@LoreleiKing
@alzheimerssoc
Thank you for articulating your distress so well Lorelei. Your point about the sexism underpinning the ad is very powerful too
3
1
32
Re the
@alzheimerssoc
ad
Now several days since I wrote to all the Trustees, inc Chair, V-Chair + all ambassadors, patrons, v-presidents I cd find emails for...
I've only had one reply
Busy ppl yes - but these are public offices. Surely they have a responsibility to respond?
3
8
20
Thread 11/11
What will it take for you to admit you have made a mistake and pull this ad?
2
7
18
@alzheimerssoc
@kategarraway
@ITVX
But why would anyone want to enter the workforce to look after people who you claim are already dead?????
2
2
14
Have you ordered YOURS yet?
@HildaHayo
(Chief Admiral Nurse + CEO
@DementiaUK
says it's: "an essential read for researchers + academics, challenging the myths + misconceptions about the ability of people with
#dementia
to actively participate in research."
@Innov_Dementia
2
9
16
It's
#FridayFollow
Day... and I've recently set up my own personal Twitter account.
If you value following me, please recommend to your own followers so I can build up my account.
Many thanks .. and happy Friday!
0
9
14
Thread 5/11
Have you ever read Tom Kitwood? Have you ever heard of social death? Malignant social psychology? Personhood?
1
4
14
@neilmcrowther
Yes... and even if used metaphorically (which it wasn't) it deliberately negates all the humanity which every living person has. I cannot believe that
@alzheimerssoc
cannot (or will not?) understand this.
3
3
14
Thread 6/11
Is there any requirement on your staff or your media partners to adhere to your own guidelines on acceptable language and portrayal of people with dementia in the media?
2
6
14
@neilmcrowther
If anyone wants to work on these issues in their own organisation or practice, do take a look at 'Dementia and Hope' (free download)
0
10
14
Thread 4/11
Have you ever heard of the social and psycho-social models of disability?
1
4
13
Stop negative and inaccurate dementia publicity. Show the hopeful, creative possibilities. - Sign the Petition! via
@UKChange
Now only NINE signatures to take this to 1000!!
0
6
12
Thread 9/11
Did you ever consider how offensive this ad might be to people? How many people are you happy to upset in pursuance of this goal?
1
4
12
Thread 10/11
Why are you still promoting your own support services when you have said that everyone with a diagnosis of dementia is effectively already dead?
1
5
11
#DementiaActionWeek
"This inspirational book marks the emergence of a new research culture for dementia studies" (
@Richard_Ward_1
)
Order YOUR copy of
@Innov_Dementia
's new book about the groundbreaking
#DementiaEnquirers
project
Go to or Amazon.
0
8
11
Thread 3/11
What would you count as success from this ad – (i.e. what were you trying to achieve?)
2
5
10
Thread 7/11
How much did the ad and its media slots cost you? Where did this money come from?
1
4
10
@neilmcrowther
@alzheimerssoc
Gosh thank you so much Neil, you say everything I've wanted to say, but so much better, And thank you for your honesty about your own experience. Sending all best
0
2
9
#ADI2024
Have you ordered your copy of the
@Innov_Dementia
new book about the groundbreaking
#DementiaEnquirers
project?
Go to … or Amazon.
0
2
9
Thread 8/11
Who briefed the production company? Who signed off the ad?
1
4
9
@Annagoge
And surely that is what 'awareness raising' should be about.
About how to support and listen to and connect with everyone who has dementia.
Not about what % of the population knows what % will die of it (again and again and again)
2
2
9
@neilmcrowther
@alzheimerssoc
@JacquiBingham
So many questions that need answering and real concerns that need addressing. But AS keeps digging its hole … again and again and again ( to coin a phrase)
1
0
8
#DAW2024
#DementiaActionWeek
This year more than ever we need to highlight how ppl w
#dementia
can continue to contribute their skills + experience
Have you ordered
@Innov_Dementia
's new book yet?
0
7
8
@ProfRobHoward
It's a complex world & totally possible for all these things to matter. Maybe they're all connected? Ppl w
#dementia
like Gail + many others shd be congratulated for explaining to us how deeply the neg
@alzheimerssoc
narrative affects their hope, self-esteem + daily lives.
1
2
8
@dr_shibley
Respect yr views but, in a democracy, it's perfectly legit if you are v upset about something to:
- send questions to trustees, patrons etc
- use social media to explain views/ discuss
- start a petition
- make a complaint
Not abnormal. Indeed the sign of an engaged citizen
2
1
8
We have some lovely testimonials for our
@Innov_Dementia
new book about the groundbreaking
#DementiaEnquirers
project
Order your copy from JKP or Amazon.
0
2
6
@mroutled
@alzheimerssoc
It’s unbelievable. And not a peep from the Trustees ( as far as I know?) including the chair. Or the patrons, president , vice president. Do none of them have anything at all to say… like maybe “oops sorry!”
3
1
5
@AdelinaCoHe
@alzheimerssoc
But who, after hearing
@alzheimerssoc
recent 'die again and again and again' messaging, would seek a
#dementia
diagnosis now? It makes me so sad that that so many years of work have been undone.
0
2
5
@george_rook
Totally agree with you George. But hard to move on when the film is still out there and distressing more ppl every day. Hoping complaints to
@Asa_official
will bear fruit soon...
2
3
5
@ProfRobHoward
IMO this carers v ppl w
#dementia
dichotomy is sooo unhelpful (btw many of the latter have been the former). The big discussion is if the 'social death' narrative is helpful to ANYone - a focus on personhood, hope, meaning, relationship, inclusion has to be the right way for ALL.
2
1
5
@charliemuss
@JamesRuFletcher
Please see the The Dementia Enquirers Gold Standards for Ethical Research - all co-produced with ppl w
#dementia
and free to use
0
3
5
@dr_shibley
@ProfRobHoward
@kesleeman
@ProfBrendan
@Dara_deBurca
How sad that the genuine pain and distress caused to so many by this ad is dismissed as 'faux outrage'. Words really fail me.
2
0
4
@ProfJuneAndrews
.
@KateLeeCEO
has said very clearly though that the aim of the ad is NOT about fundraising
1
1
4
#ADI2024
"This inspirational book marks the emergence of a new research culture for
#dementia
studies" (
@Richard_Ward_1
)
Have you ordered YOUR copy of
@Innov_Dementia
's
new book about the groundbreaking
#DementiaEnquirers
project?
Go to or Amazon.
1
3
3
#DementiaActionWeek
@HildaHayo
(CEO
@DementiaUK
) says new
@Innov_Dementia
book is:
"an essential read for researchers + academics, challenging the myths + misconceptions about the ability of people with
#dementia
to actively participate in research."
Order from JKP or Amazon
0
2
4
@ProfRobHoward
@alzheimerssoc
Oh dear, please don’t start on that one again!!! So much harm already done
1
0
4
@TommyShakes
Such a complex issue (understatement of the year!). I'm v disappointed that
@BBC
failed to show other views, incl your own Tom. Personally I would like the choice even if I wasn't close to the end, but in an incurable 'predicament'. But I can't see that coming any time soon...
0
0
3
@dr_shibley
@alzheimerssoc
And that’s exactly why the AS should be offering HOPE and leading the way in showing how we can all support ppl w dementia and their families to continue their lives as best they can. That is their job and responsibility.
2
0
3
@RadioTdw
@KateLeeCEO
@alzheimerssoc
It would be good to invite
@KateLeeCEO
to a debate with human rights and lived experience experts who will challenge her. Otherwise I fear it may end up as just another chance for
@alzheimerssoc
to repeat all its defensive (and offensive) statements.
0
0
2
0
0
3
@LoreleiKing
Yes I got the same. I’m quietly hopeful. The ad clearly goes against many of their standards.
0
0
3
"My life was for living, but now it’s time for dying"
In
#DyingMattersAwarenessWeek
I recommend
@WendyPMitchell
's final book "One Last Thing"
And her last blog
0
0
3
@DUETcare
I'm not sure either - but I've used the email from them to reply with more examples of distress I've come across - and some quotes. Even at this stage I guess the more evidence of harm, the better...
0
0
3
0
0
3
@pollykaiser
@Jennife10651535
@drjenunwin
@kathryndykes1
@natashadlord
@FPOPofficial
@GMOPN1
@GMAgeingHub
Thanks Polly - have just followed them all!
1
0
3
@TraceyShorty28
@janis_cottee
@Koohinor64
@DiverseAlz
So many stereotypes that still need busting. Keep at it Tracey!
1
1
3
@neilmcrowther
Thank you Neil for this blog - brilliantly articulated as ever - though reading it makes me so sad.
1
0
2
@Chris5anne
@ASA_UK
@alzheimerssoc
Yes, it's hopeful that
@ASA_UK
are looking in depth at the
@alzheimerssoc
ad
But meanwhile every time it's aired it's causing distress and entrenching stigma + despair
I urge
@KateLeeCEO
+ the Trustees to pull it now
2
2
2
@neilmcrowther
@SteveMilton1
@Minghowriter
@DarrenGrimes77
@alzheimerssoc
yes I agree Neil. And she was very clear that she wasn't advocating anything for anyone else - and that everyone is different - only that she should have the right to make her OWN choices, even about dying.
0
0
1
@Nibbles1963
@alzheimerssoc
@Sianwelby
I simply can’t believe they are still using the S word. Against all their own guidelines!!!!
1
0
2
@neilmcrowther
@DementiaVoices
But please note: this twitter account (
@DementiaVoices
) is no longer used. Follow
@Innov_Dementia
and hashtag
#DEEP
:-)
0
1
2
@neilmcrowther
@AlexHydeSmith
@KateSwaffer
@nchadborn
@3NDWG
@WoodheadAndy
@JulieHa59928392
@DementiaVoices
@agnes_houston
@WillyGilder
@alzheimerssoc
A very good question!!!
0
0
2
@ProfJuneAndrews
June are you really saying this awful ad will help with ‘ pre death grief’ ???
0
0
2
@JanetMagee18
@dr_shibley
@alzheimerssoc
IMHO 'living well' was never any kind of 'expectation' of ppl w
#dementia
or their families. It was an exhortation to services & society to ENABLE ppl to live the best lives they can, WITH support, understanding & positivity. That's a very different thing.
1
0
1
@HousingandCare
@alzheimerssoc
@Sky_AtlHD
I totally agree. The
@Asa_official
are looking into this - please complain to them asap, it's very simple
0
0
2
0
0
2
@debbunt
@PeterBe1130
@AlzAuthors
@RadioJohnnie
@AlzResearchUK
@DementiaUK
@YoungDemNetwork
@DeeBeeCW
Huge well done both of you, a fantastic achievement!
0
0
2
1
1
2
@dr_shibley
@alzheimerssoc
Well it’s not clear who their target is. I assume it’s the public given the TV slots they have chosen. If they want to influence NHS and care services this is no way to do it.
1
0
1
0
0
1
@willygilder01
@suzie_beresford
@HeartofNewhaven
@scottishballet
@edintfest
what a wonderful project!
0
0
1
@neilmcrowther
@SteveMilton1
@Minghowriter
@DarrenGrimes77
@alzheimerssoc
Just popping in here... I think what Wendy stood for was CHOICE - choice to live, to take risks, to have fun, to decide when to die, and to die with dignity. On a personal level, I'm so glad she never had to see or hear about the ad
1
0
1
0
0
1
0
1
1
@GailGre59728262
Always a good idea to change course for a bit when we run out of oomph. Love this!!!
0
0
1
@mftlibraries
@robdelaney
@drkathrynmannix
@SPCTWythenshawe
@WythenshaweSPCT
@MFTnhs
@EhwMft
Can I recommend
@WendyPMitchell
book "One Last Thing"?
0
0
1
1
0
1