Forgive me, friends, I'm all wrote out... by Julia Jones

Thank you Claudia Myatt
for designing our logo
It was on this day, three years ago, that I published my first John's Campaign blog: John's Campaign and June's and 800,000 more.  I can't, this evening, find the words to describe all that has happened since. I am tempted to cheat and to refer you at once (here it is) to Nicci's anniversary evocation (published in the Observer) of the place we find ourselves now.  She sees us dancing in an open field, lonely at first, but soon joined by one brave soul and then another. It's not long before the whole field, the fair field full of folk, is alive with movement and that glorious release of creativity that comes from being an individual in a crowd when it's not you that matters, nor the other dancers, but the music that lifts and controls you all. I don't mean the Pied Piper of Hamelin or sirens luring sailors to their doom, this is a dance that transforms the place where you are. John's Campaign has unexpectedly become a movement. It's something people can use to do things that they already wanted to do.

I also wrote an anniversary article last week. Mine was necessarily different (I can't write like Nicci anyway) because its audience was different. My article was for the Health Service Journal, read, I am told by Chief Executives and Policy Makers. The HSJ editor has been kind to us (I think perhaps a relative of his was in an older person's ward earlier this year?) but one of the more unexpected lessons we have learned since 2014 is the relative impotence of CEOs, policymakers and other people with apparent power. 

The wisest of them know this. I remember our shock when Nicci and I first went to see England's Chief Nurse and the NHS England Patient Experience team -- truly good people. They saw our point and understood what we wanted but declined to wave their magic wands of Power. They told us that they'd had enough of ordering people to stand up and dance to a particular tune. It had so often led to trouble -- the law of unintended consequences. Try a policy of protecting mealtimes so that patients are not disturbed by medics wanting to come and stick needles in them - and what happens? inadvertently you have created a situation where Mrs Jones's anxious daughter, who has travelled miles to visit her ailing Mum, is not "allowed" to remain by the bedside while lunch is being served, despite the fact that her mother then spends the "protected" period spitting her food in well-directed arcs around the cubicle because she's convinced the healthcare assistant is trying to poison her. If our campaign was to succeed, said these sadly-experienced policy-makers, people had to want to stand up and dance with us.

And they have. In all four countries of the UK there has been one single nurse, perhaps with a team supporting her, who has stepped forward, pointed their toes, stretched out their arms and (as my children would say) begun to "throw shapes". 

Jo is second from right, next to Nicci
Thank you, Jo James, lead dementia nurse at Imperial College Healthcare NHS Trust in London, for committing yourself and your team to take as long as was needed to stick CARERS WELCOME posters on every single ward door in your immense metropolitan hospitals. 

Thank you, Karen Wilson, senior charge nurse of Ward 12 Wishaw General Hospital in Lanarkshire, for getting in touch via facebook to say that you and your colleagues always welcomed carers but you had decided to formalise your welcome, so you too would be sticking up a poster.  (And thank you, Andy Pender, in the Emergency Admissions Unit of the same hospital, for emailing a week later to say that you hadn't been routinely keeping people together with their family members but you'd seen this was causing distress and you were going to use our campaign to change your ways of working.)

Delyth, in blue, holds a "pasport gofalwr"
Diolch, Delyth Fon Thomas, acute dementia nurse specialist and prevention of delirium facilitator, in Glaslyn ward, Ysbyty Gwynedd for welcoming our campaign to Wales and acclimatising it as Ymgyrch John. 

Thank you, Paula Thompson of Downe dementia ward, Downpatrick, Northern Ireland for using John's Campaign as part of a variety of measures to ensure that patients on your mental health ward (several of whom are detained compulsorily) have the best quality of life, physically and emotionally, until the end of their days, if they reach that moment while in your care. 

There are so many others -- Dr Natasha Lord, the first clinical psychologist to pledge support in her mental health wards, Dr David Oliver, practicing geriatrician and eminent member of societies, Sharon Thomson, manager of the Moat House in Essex, who was persuaded to be the first English Care Home manager to join us.  Truly the list could go on as ward managers and directors of nursing, charity chiefs and carer liaison workers began linking arms and twirling to the tune. Not our tune, you understand, but the tune that we began hearing together, a human tune that was in our hearts all along. All that Nicci and I did, three years ago, was give it a name. 

We didn't ask people to paint birds on their ceilings so people lying on trolleys would have something to look at "for John's Campaign". We didn't insist that they sit in their offices every Monday evening offering carers support "for John's Campaign". Neither did we ask for comfort packs to be supplied, camp-beds purchased, family rooms re-decorated, car-parking fees reduced "for John's Campaign". Yet all these things have happened in many different places.

When I began writing this post this evening I felt I had no more words to offer. Currently we are making another effort to persuade the people with power that they do want to affirm the actions that have already been taken by others. This is for the obvious reasons of equality and continuity -- and retirement. We want to be able to go off and rub our blisters (or return to different forms of writing) knowing that it is safe for others to carry on, encouraged and applauded. So, today, I'd spent most of my time writing "persuasive" letters (as they teach you in GCSE Eng lang). It felt pointless and sterile but I'd set myself to do it.

Then I went for my regular tragi-comedy evening session with Mum and her fellow-residents and staff in their advanced dementia "suite". It's not a ward and it's not (however hard it tries) a home but it is the most extraordinary, indefinable community. Words work differently in Willow. They're quite troublesome often and actions (behaviours) are frequently more eloquent. A bit like John's Campaign? Perhaps. I was inarticulate when I returned and couldn't explain at all to Francis what had made the evening's interactions so touching, so exhausting, so... sui generis. That would take a different level of language altogether. 

This three year period has been one of kaleidoscopic and fleetingly intense relationships -- as you have when you are caught up in a dance (or a movement). So I'm giving up on words now and leaving you with three photographs that were taken last week in Ireland. 

This is Theresa, a former nurse, living with dementia, who wrote a brilliant article in our Observer series and then flew -- on her own -- from Belfast to London last autumn to speak passionately and eloquently at our conference.  Theresa doesn't find life easy, she describes her brain as "like mud" but she is infuriated by people who talk about people with dementia and arrange things for them without having the basic courtesy and good sense to consult them. I am uneasy about this picture because it shows a potential gap of misunderstanding.  I could be about to be patronising; Theresa could be about to be suspicious.
As it happened Theresa and I were so truly glad to see one another -- neither had expected that the other would be at the event -- that once we had the good sense to give each other a big hug, everything was unequivocally okay.

This might be one of the weirdest photos ever -- I'm wriggling and gibbering like someone in a Harry Potter enchantment. Yet the person I'm with is Deirdre and I'd never met her before but we'd emailed one another as she signed up first one ward, then another and another in different hospitals in the South Eastern health and care trust. Deirdre was one of the nurses who met me with a gorgeous smile and simply took me under her wing. I could wriggle and gibber as much as I liked, with Deirdre I knew I was okay. 

Three years meeting and working with people like Deirdre and Theresa have been three unforgettable years.
I choose that word advisedly.


Susan Price said…
Julia, we need to celebrate you and praise you like we should.
Thank you, on so many levels. For always writing us such brilliant blogs. For taking up John's Campaign and working so hard with it for so long and to such wonderful effect. All of us, at some future date, may have cause to be very grateful for that.
Thank you.
Jan Needle said…
As so often, Jul, you leave me with nothing to say. I'm so glad you are my friend.
Penny Dolan said…
Julia, I am so full of admiration for all that you and Nicci have achieved with setting up and spreading the word about John's Campaign, as well as the amount of energy - of all kinds - that you must have needed to get this far, and what that must have cost you both, to, even to a good purpose.

Huge congratulations on these last three years, and for sharing some of the growing of John's Campaign here on AE, as well as in other places. Thanks.
Bill Kirton said…
This is beautiful, Julia, both in the message(s) it carries and in its lovely lyricism. The latter undermines comprehensively your claim(s) that you're incapable of articulating some of the experiences and situations that have arisen from campaign’s success. Thank you again, congratulations on the changes you’ve inspired and let’s hope their impact continues to spread.
julia jones said…
Dear AE friends -- you don't know how much you have mattered -- and continue to matter. Thank YOU
Enid Richemont said…
Julia - I so much admire your courage and imagination. There was a long - ago programme on BBC called something like: Black Daisies for the Bride - yes I know I've got this wrong, but maybe someone can correct me? It was about Alzheimers, and made at a time when nobody talked about it much, but I managed to see it, and it was unforgettable, with its image of a bridal train symbolising a life's experiences,and a woman walking through hospital corridors wearing it.
julia jones said…
Thanks Enid -- have just looked up Black Daises -- as you say, very early and by Tony Harrison. Thank you for the suggestion. Often I tink I can't bear dementia one more moment (so I go and select a Book at Bunk time for Yachting monthly or read something violent about Russian mafia) but this sounds most interesting, and sufficiently "historical". V grateful

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