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.

Continue Reading

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.

 

 

Continue Reading

Remembrance Sunday

Pat French, 87, and Barbara Marchant practise their selfies

I thought I’d share a little bit of magic with you in advance of Remembrance Sunday.  It occurred in Bedford, when grandmother and erstwhile choir member Pat French, who is living with advanced dementia, broke into song.

Pat was a little girl during the second world war and, despite her condition, she still remembers how frightened she was of the air raid sirens.  Reminded of the propitious date coming up this weekend by her carer Barbara Marchant, Pat started singing the hymn, I Vow To Thee My Country.  Her 87-year-old voice is pure and true.

I must admit, I couldn’t remember all the words so I looked them up, and while Pat may not have remembered the lines in quite the right order, the great thing is that the music and language flow from her so fluently.  She is obviously content, living in the moment, enjoying her song.  It is absolutely all that matters.  Take a look.

 

 

Pat has Lewy body dementia, the UK’s third most common form of the condition, affecting about 100,000 people.   Among other symptoms are problems with understanding, memory, mobility, hallucinations and confusion.

Barbara, who works for Home Instead Senior Care lost her own mum to dementia. She says that seeing Pat singing was incredibly moving and emotional.    “I have seen Pat’s condition rob her of so much, which is why it’s joyous that music can help lift her – it means I can see a little bit of the old her.  She is usually quiet, but we love singing together and she lights up when she sings, which just melts my heart”.

Pat’s daughter Emma Muncaster said that although her mum often can’t remember who she is, she remembers the words of her favourite songs.  “Music calms mum when she is agitated.  She used to be in a choral society; singing takes her back to those happy times and we treasure the moments singing along with her”.

My mum Kay Kelly

My own mum wasn’t a singer but she loved listening to music, often sashaying about the living room to Frank Sinatra and Dean Martin, two of her favourite ‘60s crooners.  And I’ve written before in the national press about how, one Christmas Eve several years ago, when mum had been lying silent and motionless in her nursing home bed for many months, the two of us listened to the Nine Lessons and Carols from King’s College, Cambridge – possibly her favourite thing, ever – and she opened her eyes.

It was to be the last time I saw my mum alive.  She died late at night on Christmas Day, just minutes before I arrived.  So those poignant memories of the day before are precious beyond words.

Little did I know it then but meaningful music has a powerful impact on people with even the most advanced dementia.  Neurologist Professor Oliver Sacks, concluded that “the past, which is not recoverable in any other way, is embedded in music as if in amber”.

Yet research from the Commission on Dementia and Music shows that good quality music therapies are available in just five percent of care homes, 70 percent of whose residents have dementia.

Hence my ongoing campaign to persuade a national radio station to reintroduce the weekly school’s radio programme, Singing Together (which ran from 1939-99), this time for older people and those with dementia.  It need last only twenty minutes or so, introduced by a singer who would lead its listeners (who let’s face it, this being radio, could be anyone from granny living at home to four-year-old Maisie watching her mum cooking) in songs with strong rhythms, rousing choruses and, for those of us slightly older folk, evocative memories.

The idea, I hasten to add, wasn’t mine but that of internationally renowned soprano Lesley Garrett.  A letter to the Times signed by scores of key influencers in the dementia sector called on the BBC’s Director General Tony Hall to bring Miss Garrett’s brilliant proposal to life.  He politely declined.  But I am pursuing other avenues and hope to bring you better news next year.   After all, as 58-year-old Hilary Doxford of Yeovil (who lives with dementia) says, it’s obvious.  “A small investment, a massive return on the scale of joy”.

I like to think that Pat, Emma, Barbara and countless others, whether or not they are affected by this cruel condition, would heartily agree.

 

 

 

 

Continue Reading

Big Ian

Big Ian. The name fits him like a supersize glove. Ian Donaghy, all 6ft 2ins of him, has big ideas, huge energy and a massive Geordie heart. Many of you will know him through his Twitter handle @trainingcarers.

As we walked together round the grounds of York university in the golden autumn sun, my cockapoo Bert tugging at the lead, Ian told me his story.   It’s an unorthodox one and he’s a difficult man to define: speaker, author, trainer of care staff, erstwhile teacher, with a spell working for the Home Office.    “I’m an outsider in everything I do.   Even when it looks as though I’m on the inside, I’m not.  My only agenda is to make things better, to make people better.  It’s straightforward”.

His latest venture is an online campaign #DEMENTIAisAteamGAME, launched with a series of short, powerful films highlighting the fact that the condition isn’t one person’s or one care home’s business but a challenge – a team game – in which we all  have a part to play.   “As a community we can either be part of the problem or the solution,” says Ian.

Roy, a 94-year-old living with dementia, has a dream to score a goal for Notts County.   If you want to put a smile on your face, click play.  This little bit of magic has already had over 2 million hits.

The films are a culmination of Ian’s strengths as a maverick, inspirational storyteller.   He attributes their success largely to the musicality of his script. “I know how to make somebody laugh, cry, get angry, and that’s how change happens”.

Take a look at this one about 88-year-old Hal from Redcar, who can Skype, do emails and is “still a canny dancer”.   In one week it had over 1,600 views.

There’s no doubt that Ian’s way with language is extraordinary, as shown in his two books.  Dear Dementia is packed with bite-sized chunks of wisdom delivered in Ian’s inimitable style – “Dear Dementia, total strangers undress me, shower me and put me to bed without introducing themselves. Lasses never used to be so forward”.

The Missing Peace, which came out this year, is more structured. Ian describes it as a patchwork quilt of conversations, letters, monologues and stories to explain the bespoke survival kits people have created to survive grief. It’s not about death, he says. “It’s about life and how to be the friend you would love to have. It is about living today not tomorrow”.

Yet Ian, though a proven writer, is very much a doer. He’s also a musician and entertainer who’s “filled theatres for 30 years” and sung with the biggest names around, including James Blunt, Lulu and Justin Timberlake. He keeps this side of his life separate from his care work because some people discriminate against him for it, thinking (wrongly) that he can’t be both.

In fact, it’s the diverse aspects that make him who he is that also inform all he does. Broadcaster Angela Rippon describes him as a “powerhouse of ideas, which he then brings to life”.

Forty-eight-year old Ian was born in Tow Law, County Durham. Following a stint as a 28st doorman he took himself off to university to train to become a teacher, embarking on his career at a school for children with special needs in York. “The students taught me more than I ever taught them,” he says. “They taught me not what to do but how to do it”.

It was to prove the guiding light in his life. The big man doesn’t lecture people, he draws out their potential – starting with the children at Fulford Cross where individual lesson plans (IEPs), worked out between the student, his or her family and the school, ensured that every decision placed the individual at its centre. Sound familiar? It’s good old person-centred care of course.

Unsurprisingly, in 2000 he was headhunted by the Home Office to implement in-school inclusion units to give a second chance to youngsters who had been excluded. In one area under his watch, the number of permanent exclusions fell from 13 to zero in a year. How did he do it? He taught the students for 30 lessons a week with no “frees” for himself and never had a cup of tea in the staff room, instead spending every break with the kids, “so I was always in credit with them because I listened to them.”

In 2010 Ian was headhunted again – by a leading figure in the care sector who wanted him to replicate in the care world the positive impact he was having in the educational field. Ian being Ian, he quit his job as a senior teacher, rolled up his sleeves, donned an apron and plastic gloves to experience life as a carer.

Inundated with work in hospitals, clinical commissioning groups and GP surgeries, in 2012 he set up his own company, Training for Carers (now morphed into bigian.co.uk – because everyone knows him simply as Big Ian).  He also became a regular on the speaking circuit, lauded for his infectious enthusiasm and thought-provoking delivery.

He works with numerous organisations including Wren Hall nursing home and Landermeads care home in Nottingham, both of whom he describes as outstanding. When I ask him to define excellent care he says it’s when the provider puts the individual at the centre of the wheel, when carers care “not only for the people in front of them but for one another, so that it feels like a community, not them and us”.

It’s clear that Ian Donaghy is a big personality with his own way of doing things. But there is also a softer side to him, as shown by A Night To Remember, the event he established in memory of his mum, whose death from cancer in 2009 was pivotal in his life.

“Before that I was focussed on things that didn’t matter – I liked fast cars and money. Suddenly I realised they don’t matter: when you lose somebody you love, you get clarity, you filter out the rubbish”. Now he wants to use the “rather odd” gifts he’s been given to make a difference for others.

Over the past five years A Night to Remember, in which Ian brings together the cream of York’s musicians, has raised £130,000 for charity – initially cancer charities and now dementia. The last one, at York’s 1,800-seater Barbican theatre, was packed to the rafters.

Other projects include Xmas Presence, a “family Christmas Day” for older people and those with dementia that’s been held in York for the past four years. Rather than giving up their Christmas Day to do it, Ian says those who help out – he calls them his “handful of diamonds” – get Christmas back.

And then there’s Forever Young, a festival of music bringing generations together that’s held at York’s Grimston Court care home. Ian describes it as “the Great British Bake Off with guitars.” This year it raised £7,000 for Age UK York and St Leonard’s hospice; its finale featured a ten-decade band with members ranging in age from ten to 92.  It’s broken down barriers and changed the way people view care homes, elderly loneliness and dementia.

The list of Ian’s roles and activities seems endless. Even he’s not sure of the tally. “It’s just one bloke and a mobile phone,” he says with unusual understatement, before adding that he’s surrounded by incredible people who help him make things happen.

He tells me he’s happy now because he’s “completely on the rails”, everything he thinks, says and does completely overlaps.  They’ve all come together in the #DEMENTIAisAteamGame campaign.  “I’ve got a voice now and I want to give a voice to the people who maybe’s haven’t. It’s not a bad little mission to have is it?”

No Ian, it’s not.

Continue Reading