48. Pippa Kelly - dementia campaigner extraordinaire!

Wild Card - Whose Shoes?

Continuing the recent storytelling theme, and in solidarity with the #StartWithPeople event run by the Public Participation team of NHS England this week ...
For the first time in the series, I'm picking up threads from our #dementiachallengers work, and where better to start than talking to my friend Pippa Kelly, award-winning, blogger, journalist, dementia campaigner, author and public speaker!
Storytelling … and creating ripples ... BIG RIPPLES!!🍋🍋🍋
Enjoy!
Lemon lightbulbs 🍋💡🍋

• ‘Wild Card – Whose Shoes’ podcast series is helping great people have a voice
• We don’t necessarily set out to become influential campaigners – our personal stories lead us there
• Great hashtags support storytelling to bring about change … think #HelloMyNameIs, #dementiachallengers, #MatExp!
• Personal stories help others feel they are not alone and help to build communities. Bolder together!
• Telling personal stories is hard. The emotion is bubbling under the surface and we are vulnerable
• Caring for others happens against a backdrop of your whole life and affects the whole family
• Speaking out honestly about how you feel helps others
• Resentment. Do others feel like that? Well, yes, sometimes they do!
• Stories resonate. "Oh, my God, thank you for saying that!"
• Support people who generously share their lived experience – don’t have them as a token, tick-box on YOUR agenda!
• Acknowledge and plan for the fact that stories may trigger difficult memories for the storyteller and the audience
• We have to be authentic – none of us is immune to getting emotional, even if we have told our stories many times
• Huge, unpredictable ‘ripples’ happen when we share stories – some great examples here!
• Personalised care and dehumanising care are two sides of the same coin – learn from both
• Cynicism about the power of storytelling is dispelled when NHS leaders start telling THEIR stories
• NHS language can be confusing - what do people do that don't have a relative who's a NHS consultant to explain everything?!
• There always needs to be a human connection, a relationship between the cared and the cared for
• The ‘battle’ for NHS continuing healthcare is a nightmare –a system that perpetuates health inequalities
• You know your story has ‘landed’ when you see everyone nodding.
• Powerful stories grab people emotionally … 'by the short and curlies'!
• Don’t let your systems become dehumanised ... "The living before the deceased"; 'Certificate of Existence'?!
• Storytelling works! When data and talk about pathways failed … £3 million of public funding was secured by starting with the stories
• Poweful ripples happen and stories interweave when people connect and share
• As always, @Gills_Mum was influential!
• Anna Geyer’s graphic records capture the commonalities and threads between different areas of health care: people, vulnerability, wanting to be heard, to be listened to, to be taken seriously, to be valued.

Links:
Pippa Kelly’s podcast: Well I know now
Pippa's book - 'Invisible ink'

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I tweet as @WhoseShoes and @WildCardWS and am on Instagram as @WildCardWS.
Please recommend 'Wild Card - Whose Shoes' to others who enjoy hearing passionate people talk about their experiences of improving health care.

Chapters

1. 48. Pippa Kelly - dementia campaigner extraordinaire! (00:00:00)

2. Storytelling … and creating RIPPLES! Welcome Pippa Kelly, award-winning, blogger, journalist, dementia campaigner, author and public speaker! (00:00:51)

3. How did Pippa become a dementia campaigner? – her personal story (00:02:14)

4. Writing for the national press - people wanted Pippa to write about dementia! (00:03:27)

5. Pippa becomes HIGHLY influential in the dementia world and, through powerful storytelling, take off! (00:03:49)

6. The role of ‘Wild Card – Whose Shoes’ podcast series in helping great people have a voice and share their stories (00:07:16)

7. Shoutout to the late, great Dr Kate Granger and her global #HelloMyNameIs, campaign, promoting that all important human connection. Storytelling at its best! (00:08:30)

8. Using personal stories to let others know they are not alone. The power of communities - in dementia and in life! (00:09:29)

9. Using these communities to be a force for positive change. Bolder together! (00:10:48)

10. It is difficult, but empowering, to tell personal stories – and you have to be authentic (00:11:10)

11. Caring for others happens against a backdrop of your whole life – Pippa tells more of her story and speaks honestly about how it made her feel (00:12:11)

12. Resentment. Do others feel like that? Well, yes, they sometimes do! (00:12:33)

13. Stories resonate. People are grateful when the elephant in the room is released. (well, not literally 😉) "Oh, my God, thank you for saying that!". (00:14:27)

14. The importance of supporting people who generously share their lived experience – don’t have them as a token, tick-box on YOUR agenda! (00:16:06)

15. Acknowledging that stories may trigger difficult memories; creating the conditions where people feel comfortable to look after their own needs as paramount (00:17:04)

16. None of us is immune to getting emotional – even if we have told our stories many times. Your ability to cope will be different on a different day, at a different time (00:17:38)

17. A stressful journey, making her late, meant that Pippa was not able to ‘ arm’ before telling her story, discovering how close to the surface one's emotions are (00:19:00)

18. Pippa tells an amazing ‘ripples’ story – how a chance conversation with Gill in 2015 led to her doing formal talks as part of a NHS leadership programme (00:20:41)

19. The contrasting care experience of Pippa’s father-in-law (exemplary) and her dad (often terrible) demonstrated the power of genuinely person-centered care (00:21:19)

20. Opportunities come thick and fast – Pippa writes the foreword to the commission's report, gives speeches to NHS leaders, and becomes a regular speaker on ‘the power of storytelling’ on a NHS Leadership Programme. (00:21:40)

21. Overcoming cynicism – yours and theirs! And the unblocker – others telling THEIR stories! (00:27:32)

22. NHS language can be so confusing for patients - what do people do that don't have a relative who's a NHS consultant to explain everything?! (00:27:58)

23. We need to ensure a human connection, a relationship between the cared and the cared for, whatever the exact professional role. Why does it take a doctor to remind of this, before people ‘get’ it?? (00:30:14)

24. The ‘battle’ for NHS continuing healthcare and how the system (aka the Resource Allocation Filter) sets out to confound. Why would someone who can talk about Shakespeare (not) need it? (00:32:05)

25. The scoring system is traumatising for family carers and dehumanising for the person being discussed (00:34:00)

26. Systems like that perpetuate health inequalities if you do not have the time and ability to battle (00:36:15)

27. When you know your story has ‘landed’ and you see everyone nodding (00:36:33)

28. ‘Girding your loins’ and getting people onside by grabbing them emotionally … Playing the system. (00:37:18)

29. The inhumanity of systems. "The living before the deceased". And that old chestnut, the 'Certificate of Existence'! The use of public money public has to be carefully regulated. But there are ways to do it! (00:40:52)

30. "But does storytelling work?” Well, yes it does! When data alone failed … the woman who secured £3 million of public funding through storytelling (00:43:39)

31. A memorable quote: "We use complex pathways in our work, but we forget that they involve people and humans with stories. We need to think about them". (00:49:21)

32. Recapping on the ripples that made this happen … many and varied and inevitably involving people connecting (00:49:38)

33. Remembering Gill’s lovely Mum - aka @gills_mum – and reflecting on how fascinating it is to hear how key themes ripple over the years, how the stories interweave through sowing seeds … and other mixed metaphors. (00:50:40)

34. It's about being slightly vulnerable. In order to tell a personal story, you are putting yourself out there a bit (00:52:27)

35. Kate Lee, CEO of the Alzheimer Society’s powerful personal story about a ‘window visit’ during the pandemic (00:53:15)

36. Gill’s dementia work led to the highly influential #MatExp campaign, using Whose Shoes to improve maternity experience with #FabObs Flo, Florence Wilcock (00:54:20)

37. The power of social media, a good hashtag (#dementiachallengers, #HelloMyNameIs #MatExp and more) and being a bit bolder! (and not knocking the energy out of things!) (00:54:41)

38. Anna Geyer’s graphic records capture the commonalities and threads between different areas of health care: people, vulnerability, wanting to be heard, to be listened to, to be taken seriously, to be valued (00:56:38)

39. Gill Phillips and Dr. Adrian Hayter are both brilliant networkers who connect people generously (00:57:01)

40. #IntentionalCoffee - connecting two of Gill’s favourite NHS consultants: Mary Salama, and Joanne Minford (00:58:00)