The Power of Stories - dammit! by Julia Jones

THANK YOU KAREN BUSH / MADWHIPPET for this extra day's grace and for your brain-blowing alternative alphabet.  Do your whippetties play it with you? They look intelligent enough...

I blame my delay on the power of stories, their power to break their bounds and invade our minds and knock our lives hopelessly off course.

The John's Campaign logo
by Claudia Myatt
It was two years to this date (yesterday) that I wrote my first John's Campaign blog post on this site. My friend Nicci Gerrard had, over that previous summer, been telling me the story of her father's catastrophic decline and eventual death following the period he had spent in hospital, severed, by Visting Hours regulations, from the loving support of his family. I'd also been reading Sally Magnusson's narrative of the night she and her sister were banned from remaining in hospital with their mother when she had broken her hip and I was selfishly determined to ensure that nothing like that was going to happen to my mother, if she were ever forced into hospital. If she were there, I'd be in there with her.

I considered carrying a short length of bicycle chain in case I needed to padlock myself to the hospital bed but, at that time, it seemed to Nicci and I that changing the system would be simpler.  After all, hospitals had been persuaded to welcome parents to support their sick children so surely when the equivalence of the situations was pointed out to them, it would be perfectly straightforward for rules to be amended so that the family carers of people with dementia would be equally welcome to support them...?  Think of it as pay-back time: that generation had campaigned successfully for change to parents' visiting in the late 1950s and 60s (when I was a child) now that they are in their 80s and 90s, overwhelmed by what feels like an epidemic of cognitive impairment and frailty, surely the least we children can do is be there with them as often as we can? "Until there's a cure, there's care." Sometimes we simply can't be there - we have our own lives to lead and conflicting responsibilities -- but when we can, and if we are willing, it is surely MADNESS to put any official impediment in our way?

John's Campaign Voices
So one would think. Nicci and I blithely began our campaign for change with her heart-rending account (published in the Observer newspaper) of her father's involuntary separation from the people he loved and who loved him -- and of its devastating consequences. "I expect he forgot who he was," said my mother sagely when I told her John Gerrard's story. The response was phenomenal -- the Observer features editor said he had never known such a wave of comment and sharing for a single story like this. The Observer is a campaigning newspaper, this wasn't something new.

Thousands of people were touched by this single tale, beautifully told, and they came forward with stories of their own. Recently we held a Conference (generously sponsored by Imperial Healthcare NHS Trust, whose lead dementia nurse had listened to Nicci's words with open ears). It was a memorable day but I've a feeling that the sessions that will stay in the hearts as well as the minds of all those who attended were those where people told of their experiences. My son Bertie, who is our webmaster, produced a lovely little booklet, Voices, to capture some of these tales. You can download it as a pdf or go to the YouTube channel on our website and listen to people reading out their own stories.  I defy you not to be affected.

We met with such understanding and good will
when we visited the CQC. But can they even make
these changes?
The conference was meant to be the beginning of Nicci's and my graceful withdrawal from campaigning. It's had two years of our lives. We are exhausted, a bit broke, we have other things clamouring for headspace and we are glad of what has been achieved so far. Take a look at our website, read the Observer list, watch the conference videos (if you have several hours to spare!) Over 400 hospitals in all parts of the UK have pledged their support. Okay - there are many more yet to sign-up nevertheless we're sure it's time this campaign was owned by the Establishment, by Everyone, instead of two lined and scatty writers who are struggling to find the time and energy to ply their basic trade.
So we thought. We'd even planned a meal out together with our wonderful, long-suffering and supportive partners to mark the occasion as we stepped back.

But the stories kept on coming. I was at a conference in Worcestershire where several  people came up in the course of the day with stories of being denied access to their own relatives in care and nursing homes. I couldn't bear to listen -- the residential sector is huge. Nicci and I couldn't begin to take it on. But then there was that Panorama programme and then, most powerfully of all, a woman called Brenda got in touch. And what Brenda said, eloquently and undeniably, was that the improvements sparked by our campaign had (almost) made things worse. She and her partner Donald had experienced the gradual humanisation of access and care as their local hospital in the Isle of Wight embedded the principles of John's Campaign but then, when Donald was transferred to a nursing home where Brenda was no longer welcome, the shock of separation was grievous. Worse than it had been before? I hope not, but Brenda's account was enough to force us to accept, what we knew was true, that the change in attitude, the breaking down of barriers cannot be restricted to any single sector, it must be a universal social change. (We have postponed that dinner - but we have not cancelled it.)

My mother's nursing home pledges to welcome
and work with families at all times.   And they do.
Donald has now died. His funeral was this week. I won't write more about Brenda's story here as I hope to persuade her to write it for us herself.
The Isle of Wight Press has picked it up in two articles, which function as chapters in an on-going tale. file:///C:/Users/GT6/Downloads/IWM1Dec02P008.pdf
Clearly there must be a third chapter and a happy ending, though it'll come too late for John Gerrard or for Donald Simmonds.

Julia Jones's most recent book is Beloved Old Age - and What to Do About It 
(and the real reason she's late this month is she's in the throes of a new one - and it's NOT about dementia)


Dennis Hamley said…
Julia, this post is so eloquent and moving that it is almost beyond comment. However, I must give one heartening piece of news. As I've mentioned before, my brother's wife has dementia and she is now in a residential home, Swan House in Winslow, Bucks. He has full access to it and has a full say in her care, the staff are amazingly welcoming, helpful and co-operative and the experience is proving wonderful for him, for her and for everybody associated with them. I'm thrilled for him.
madwippitt said…
A marvellous post as always and well worth waiting the extra day for ... you and Nicci have been doing wonderful stuff and should rightly feel proud of yourselves. Although I was aware that not all nursing and care homes were as diligent and caring as they should be, I(like I suspect many more of us) had no idea that such restrictions extended to them too - I imagined that free access for relatives was the norm across the board. Thank you for all you have done and are continuing to do xxx

PS In response to your query - Yes indeed they do! Whippets, as I am sure you know, not only understand every word you say but often invent new ones themselves ...
Bill Kirton said…
This is my 4th attempt to write a comment. The problem is that my words seem inadequate to say yet again how touching and yet inspiring your posts are. You and Nicci have achieved so much and, at the same time, coped with the most trying circumstances. Bon courage for the continuing struggle.
julia jones said…
dear Dennis - I am very very pleased to hear this. As I am discovering for myself the residential home experience can be such a liberation and a re-balancing of one's life. I am with mum every day, part of her and my routine and I observe two spouses doing the same thing. There's a woman with her husband in the room next door to mum who arrives at 11am everyday, rain or shine, and stays with him to have lunch together and time in the afternoon, then away she goes to cope with her own life and he settles contentedly to bed. And there's an elderly husband who arrives at tea time every afternoon and spends the evening with his wife. She is patently very ill but they love each other and are so peaceful and quiet together - it couldn't be like that if he were trying to manage alone with her at home.
So this is a GOOD nursing suite and must be celebrated as such. It's terrifying to think of the capacity for bad...
Sandra Horn said…
Wonderful post, Julia! I am in awe of all you and Nicci have achieved. Well done hardly begins to say it. You are trailblazers indeed.
Jan Needle said…
Jul, just got viv's mum into home in brighton. seems fantastic. she's actually eating properly, after about a year. and has made friends, and is very happy. only complainers are us two, after a week of southern railway shenanagans. now grayling's in charge of transport, it can only get worse! xxxxx

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