Back to Basics

The BBC has been told to go back to basics and concentrate on public service broadcasting if it wants to survive. 

James Kirkup, director of the Social Market Foundation think tank, hailed the corporation for helping to make Britain not just a country but a nation, but warned that it was in danger of being killed off by the internet as more and more of us watch our favourite TV programmes and listen to radio on our laptops, Ipads and Iphones.  

“When everyone watches the world through their own screen on their own terms, we all have less in common,” he argued recently in the Times.  

I know what he means: I’ve just published a blog on togetherness, urging us all to think less in terms of them and us and more in terms of we when it comes to different generations and those with dementia.

Even more to the point, I have up my sleeve the perfect way for the BBC to redress this balance.  As Kirkup says, trying to fight YouTube and other internet streams on their own ground with youth-focused content hasn’t worked for a behemoth like the British Broadcasting Corporation – in fact it’s only succeeded in annoying existing listeners.

So, why not do what it does best: some good old-fashioned public service broadcasting – in the form of a weekly radio programme which, while it has multi-generational appeal, will hugely enhance the lives of older people (particularly lonely ones) and those with dementia?  To test the waters, trail it on local radio first.  Simples.

I am talking of soprano Lesley Garrett’s inspired idea to reintroduce the BBC’s defunct weekly radio programme Singing Together, this time with a slant towards the elderly and those living with one of the cruellest conditions there is, for which singing has been proven beyond doubt to be hugely beneficial. 

I’ve a sneaking suspicion that Kirkup may have other things in mind when he argues that a BBC focused on public service programming “would offer the cultural common ground that an angry, divided country needs”.   But Brexit withstanding, he is right to say that if a family needs shared experiences and reference points, so does a nation. 

The original Singing Together radio programme was introduced in September 1939 at the outbreak of the second world war to comfort evacuated children separated from their families and help them feel less displaced. 

By the time I was enjoying it as a nine-year-old in my home counties’ convent Britain was into the ’60s and the war was well over.  But I can still remember the sense of reassuring continuity and community that it engendered as I belted out One Man Went To Mow knowing that all over the country hundreds of others were singing the same song at exactly the same time.

The programme, originally aired on the home service for schools, had been moved to 11am on Radio 4 by the time I encountered it.  It ran for just 20 minutes, presented in the friendly Yorkshire tones of William Appleby, who told us a bit about the song – its history and some of its simple musical characteristics – sang a couple of lines and then invited us youngsters to join in.

As many of you may know, I lobbied Tony Hall, the BBC’s director general, to take up Miss Garrett’s idea.  He politely refused.   But as the nation suffers a collective nervous breakdown over Brexit perhaps now’s the time to go back to the corporation, urge it to heed Kirkup’s warnings, return to its roots and its public service remit, and reintroduce a radio programme that will bring the nation together to sing.  

It would be a great way to save the BBC from being killed off by the listening and viewing habits of the YouTube generation – while at the same time providing a wonderful sense of belonging to those of an older generation whose lives are all too often lonely and isolated.

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Togetherness

There was a great Twitter exchange about the term “service users” recently.  Big Ian Donaghy, aka @trainingcarers, asked if anybody else hated the phrase as much as he did. 

“It’s like they had a contest to find the best word for people we care for and the 31st best answer WON!”

His view was shared by numerous other tweeps, many of whom disliked the inhumane nature of the term – Scottish-based @ClydeCarers thought it sounded as if it belonged to someone using a washing machine. 

Nursing home manager @Benjami8784 said the first thing he did on taking up his post was to abolish terminology, telling staff that they shouldn’t use any labels they wouldn’t be happy to wear themselves.  “It works,” he concludes, adding that the home’s policy is to use “people we care for” to differentiate between the different groups.

Innovations in Dementia co-director Damian Murphy (aka @elhijodevera) mused that there was still a long way to go before expressions such as “there was me and five residents in the home” – I must say as a pedant, I’m not wild about the grammar of that phrase, let alone its divisive nature – are widely replaced by “there were six of us”, which is so much better in every way.

Someone else mentioned how people living in care homes suddenly become passive recipients requiring feeding (horribly reminiscent of feeding time at the zoo), when in fact coming together to chat and share food and drink around a table is one of the oldest and best forms of socialising. 

If and when I’m living in a care home and no longer able to eat unaided I’d love a friend, one of the family, or someone living or working with me, to come and sit and chat with me while offering the odd helping hand.   Whereas I wouldn’t like to think of myself as someone in need of feeding – or toileting come to that.

The discussion got me wondering about labels and why we love to dish them out to people who generally don’t want or like them.  I believe much of the reason lies in our inbuilt sense of them and us – nowhere is this more true than in our attitude to older people.    

The American writer May Sarton described old age as “a foreign country with an unknown language to the young and even to the middle aged”.   

While the US philanthropist Bernard Baruch put it another, equally good, way:  “Old age is always fifteen years older than I am”. I’ll go with that, forever and ever.  But seriously, why is old age always over there, somewhere else, never where we are, even when we are?   Because deep inside ourselves, we irrationally think that it will never happen to us.  Until it does. 

I’m of an age now where, catching sight of myself in the mirror, particularly if I haven’t sorted out my hair or carefully applied my camouflage of makeup, I wonder who on earth the much older woman looking back at me over there, actually is.  And then realise with a shock that it’s me. 

This irrational sense of our own individual immunity to ageing combines to contribute to the differentiation, even stigma, felt by society to older people, who are so often viewed as a burden, undervalued and neglected.  All of which of course is not only patronising, divisive and, let’s face it, pretty unpleasant, but a missed opportunity to harness the wisdom and experience of those who are more mature than us.

Sadly, this misplaced notion of them and us in relation to old age is even more pronounced when it comes to those with dementia – with the subsequent increase in stigma and exclusion that this entails. 

I confess that before dementia affected me personally I had no interest in it.  On the rare occasions the condition crossed my radar I was almost certainly careless and unthinking, not only in my use of language but in the way I interacted with anyone who happened to be living with it.  I was never intentionally rude but I didn’t understand what dementia was and my ignorance fed my fear.   Replicate my ill-informed reaction to dementia across the population at large and you can easily see why stigma lingers.

But once my own mum developed vascular dementia, woe betide anyone who looked at her askance or spoke of her dismissively when dad and I took her to her favourite restaurant.  She was my mum.  So, she happened to have dementia.  She was still my mum, with her big heart, her eccentric ways and her numerous faults.  At a stroke my attitude changed and any notion of dementia existing somewhere else, over there, in other people’s lives, evaporated.  We are all in this together.

Now that I meet and write about so many who are dedicating themselves in myriad ways to improving the lives of older people and those with dementia, I realise that the most successful enterprises all share something in common: a sense of inclusivity, of us rather than them and us.

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Lambeth’s Healthy Living Club: there is no them and us, just all of us together

A few years ago I visited Lambeth’s Healthy Living Club where those with dementia and their families and carers come together to eat lunch, sing, dance and generally have fun.  This is how I described it in my blog: “This is not somewhere that “provides care”; there are no carers and cared for, no them and us, and certainly (thank goodness) no service users.  Instead, I met a group of people who have gradually evolved into a community and become friends”. 

The same thing struck me at The Mede – a holiday home-cum-day-club for those with dementia and their families in Topsham, Devon.  The afternoon I arrived eight people were sitting round a table playing a variety of games – it turned out that four of them had dementia, the other four were carers or volunteers.  I didn’t know this and it was irrelevant.  What mattered was the chat and laughter, the endless cups of tea, the delicious smell of freshly baked biscuits and, through the large picture windows, the expansive, ever-changing view of the Exe estuary.

Life is life; it’s finite and it has its ups and downs, but it’s ours for the moment.   Whether you’re young or old, a person with or without dementia, a carer or a someone being cared for, the thing to remember is that we’ve all been put on this earth together.   Divisive attitudes are never good.   

 

 

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Only Connect

The other day I caught a mesmerising Radio 4 programme on the history of delusions. In it, Sophie (not her real name) related what it was like to suffer from the traumatising belief that she was dead.

She experienced severe depression and a numbing sense of disassociation and detachment, sitting on the sofa for days on end, waiting, feeling desperately cold.  Then, one day, things began to change “by the simple act of a friend” who came to take her out for the day.

It was a frightening step for Sophie but her friend was insistent; she drove the two of them out of town and as she changed gear, she placed her hand on Sophie’s.  That was all.  It was a human connection.  A human’s touch.

Sophie describes the moment.  “I suddenly thought, ‘My hand’s a real hand, her hand’s a real hand’ and that was the beginning of the delusion disappearing.  The evidence of physical touch made me think, well physical touch means material world, material world means not being dead”.

How extraordinary that something as simple as human touch could have such a positive impact.

The story, which you can catch here on BBC Iplayer, immediately made me think of the very best dementia care, which means treating people as exactly who they are: unique individuals, deserving of the same respect, dignity, time, compassion and, where necessary, comfort as anyone else.

I recalled this powerful piece of radio when I attended a recent Whose Shoes? workshop in Watford aimed at stimulating discussion around how the general hospital can ensure that those living with dementia and/or learning disabilities are offered the best possible experience when they enter its doors.   

Whose Shoes? is the brainchild of Gill Phillips, whose Twitter profile (she has an impressive 26,600 followers) describes her as a catalyst for change in health and social care.  Her deceptively simple but effective board game brings together people, both within and without organisations, who are interested in specific topics – from senior management to hospital porters, carers, family and those with personal experience of the issue, illness or condition – enabling them to explore, through the concept of “walking in each other’s shoes”, the concerns, challenges and opportunities faced by all, from all perspectives.

There are no labels or titles at Whose Shoes? events, just individuals, speaking for themselves without fear of prejudice, judgement or ridicule as they discuss different scenarios.  All voices are equal, there is no hierarchy, no them and us.

In Watford, Tracey Carter, chief nurse and executive director of West Hertfordshire NHS Trust swapped ideas with student nurses, physios, complaints advisors, family carers, disability champions and a representative from the local council.   This vivid little film captures the morning’s energy and creativity, and shows how beneficial human connections were made.

Graphic illustrator Anna Geyer built up a colourful picture of the key themes based on notes written by participants.   I was delighted to hear that the patient’s voice came through clearly, that importance was given to his or her family and personal history.  That the message was to listen, not to assume, thereby affording people the respect they deserve.

Equally good to know was that high on the list was the importance of communication and language – between patients, nurses and staff; and between families and carers.    The morning, however, was more than a talking shop.  Pledges were made, which is where the full power of the person-centred Whose Shoes? approach was revealed.

Gill made it clear that she wasn’t after tokenistic gestures but pledges from the heart, what she calls “Lemon Light Bulb Moments” when individuals realise that “change is not just something that other people do but what I can do”.

Heidi Buckell with Gill Phillips

The hospital’s disability champion Heidi Buckell, 39, has cerebral palsy.  Her moving pledge was to tell midwives not to discount people.  She told a packed room of over 70 of us how her parents were told that she wouldn’t walk, let alone have a job.  In fact, she lives on her own and went to Hatfield university before taking up her post.

Earlier, Heidi had told me that the most difficult part about fulfilling her pledge would be controlling her emotions.  “I want parents to get hope and help if it is what they need,” she said.  But she admitted she gets upset thinking about what her mum and dad went through when they were given nothing but negative messages about how limited her life would be.  Heidi’s words showed the huge benefits to be had from involving “experts by experience”, those who really understand what it is to live with a certain condition or a variety of challenges – because they actually do.

Included in the long list of other pledges were: encouraging patients to “continue to be themselves”, to “see the light come back into their eyes” simply through engaging with them;  improving how  staff communicate with families and patients in order to encourage them in their own care rather than assuming that they can’t do everyday tasks such as showering.

Physio Alan Valdez vowed to be an advocate for those with dementia and learning difficulties, spotting small but important factors that other health professionals may miss and escalating them up to the multi-disciplinary team, thus hastening people’s rehabilitation. No sooner had he spoken than Bonita Sparkes, clinical nurse specialist in safeguarding said she would help Alan to fulfil his pledge by making him a safeguarding champion.

Whose Shoes? workshops are all about making human connections, empowering people and allowing them to fulfil their potential to enhance lives.  Which brings me neatly back to Sophie, the unfortunate woman who believed she was dead and was eventually helped by her friend’s soft, human touch.

Sophie also attributed her recovery to the love and concern of family and friends. Daniel Freeman, clinical psychologist at Oxford university, asked her if she thought that it was this support “and of course that direct touch on your hand from your friend” that had helped her to overcome her distressing delusion.

Sophie’s answer has an astonishing resonance for those with dementia and learning disabilities – indeed for all of us.

“I suppose that somebody taking that care for me touched me in my heart. Navigating full-on delusions you need help, someone’s got to reach out to you, to find you, which is why I’d say to someone with a family member or friend who has gone in that direction, don’t step back, try and reach out, that real human connection will make a difference.  I could feel that human connection when I was far out and lost”.

So many of us at some point in our lives feel “far out and lost”, whether because of physical or mental illness, bereavement, dementia, emotional traumas of one sort or another.  We all need people to reach out, to find us, to touch us and comfort us.  Gill Phillips’ Whose Shoes? workshops provide a safe space for people to explore how they can best do this in a professional capacity, but surely, in truth, it’s what we all need to do for each other.

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Joyous Jukebox Opera

The three professionals L to R: Louise Crane (mezzo soprano), Tom McVeigh (baritone), Francesca Lanza (soprano)

From the moment the slight figure of Francesca Lanza wandered into the nave and started to warm up her vocal cords, I knew that I was in for a treat.  Her soprano voice filled Rosslyn Hill chapel with glorious, unmistakably world-class sound.  And unlike in most opera halls, I was just inches away from its owner.

I was in the audience of The Audition, an opera starring three professionals, specially written to be performed in care settings to an audience of older people and those with dementia.

The daring concept of “Jukebox Opera” is the brainchild of Wiltshire-based Camilla Vickers who, having experienced the profoundly positive impact that her friend Francesca’s high quality opera singing had on her mother as she was dying of cancer, set up the Davina Fund so that others could also benefit.   (Camilla notes that Francesca’s singing also helped her as she cared for her mum).  From this grew HealthPitch, a fledgling organisation dedicated to restoring human connections by enhancing the lives of those who are vulnerable, isolated or in need of care.

Francesca Lanza was soon joined in the chapel by two equally spell-binding performers: mezzo soprano Louise Crane and baritone Tom McVeigh.  The trio play three out-of-work opera singers who arrive to audition for an unspecified part only to find that the director isn’t there.  Initially wary and competitive, they soften when they discover that they’ve all been out of work for some time and decide to see how well they can sing together.

The answer, of course, is very, very well.   Their combined vocal force is superlative.   The evening was inspiring.  Transformative.  Restorative.  And even though, sadly, we weren’t in a care home, I immediately understood why Camilla had been so keen for me to come.

Of course I know about the power of meaningful music for those with dementia – in fact I’m always banging on about it to anyone who will listen.  And I’m pursuing my campaign for the weekly radio programme Singing Together to be reintroduced, this time for older people including those with dementia.  Things are afoot and I will keep you posted.

But what I hadn’t thought about was how much more potent top class performances could be for those who, for whatever reason, find it difficult to communicate and connect with others in orthodox (one could say boring) ways.

Dr Claire Garabedian,  research associate for dementia studies at Worcester university and a professional cellist, understands this all too well.   A member of the HealthPitch team, she argues strongly that any performance, whether story-telling, acting or opera, has to be of a high quality if you want to engage and stimulate the hardest to reach group of people.  Which of course makes absolute sense.

She talks of the powerful communication – the conversation, dialogue, connection – between performer and audience members.  Francesca Lanza, who first sang for Camilla’s mother Davina when she was very ill a few years ago, calls it a bridge formed between the two parties and says that it’s fantastic to experience it.

Louise Crane admits that when first asked to be involved in the HealthPitch project she turned up her nose.  “How wrong was I?” she laughs.  “I would describe this as one of the most rewarding things I’ve ever done in terms of audience response and personal satisfaction”.

If you take a look at the HealthPitch film above you can see the wonderful effect that another of the company’s productions – Six Characters in Search of an Opera – had, not only on the residents, but the staff of the Old Vicarage care home in Dorset.  (If you want a quick hit of pure magic I should fast forward to about 9’ when everyone is belting out Toreador).

Activities co-ordinator Jan Millward says that hearing the opera changed the older people.  She describes one of them.  “His body language changed, he relaxed, he came alive.  He wasn’t just an elderly man sat in a care home waiting for his dinner.  He was Michael again.  It was soaring through him, you could see it, and it was the same with many of the others”.

Jan explains that when people come to live in care homes they tend to lose their identities, becoming not Mrs Smith who lives in Lilac Cottage, but simply a resident.  “We need to break those barriers down and this is one way we can achieve it”.

Her point is perfectly illustrated by the words Tez Tampling, who’s in charge of housekeeping at the Old Vicarage.  Having never been a fan of opera, she says the day that Six Characters was performed she was walking past the dining room and simply had to go in and listen.   “I have never been so moved by music in my life.  The power of their voices was incredible”.

As for the residents – the opera’s effect on them wasn’t just greater than when they listened to other live musicians, it lingered.  A couple of days after the performance Tez says that the residents seemed to have more – she hesitates for several moments, searching for the right word – “peace”.  How wonderful is that?

Baritone Tom McVeigh engages with an audience member

The big question for HealthPitch, as ever, is how the juke box operas can be sustained financially.  To date Camilla has funded them privately through her mother’s inheritance and private donations.   Now film-maker Sarah-Jayne Cooper-White plans to help Camilla develop Health Pitch so that The Audition and Six Characters are used to engage more people in care settings and among the wider public.

In her role as HealthPitch’s head of production, over the next few months Sarah-Jayne, managing director of Somerset-based branding, website and film-making company whitespace, will be creating short films and podcasts to stimulate debate around, and awareness of, the transformative power of singing and choirs, to consider and evaluate their long-term health benefits and their positive impact on social cohesion and loneliness.   The first step will be filming Health Pitch’s current tour of Scotland.

Back in Rosslyn Hill chapel one member of our audience was certainly moved.   During the performance Dr Katrin Fitzherbert, 82, who uses a wheelchair following a serious accident several years ago, was given a conductor’s baton which she used with aplomb to beat time for the assembled cast.   During the later discussions she was asked to describe the event in one word and unhesitatingly replied, “Joy!”   I couldn’t have put it better myself.

 

 

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