John’s Campaign to transform dementia care is gaining powerful support

http://www.theguardian.com/society/commentisfree/2015/jul/25/johns-campign-dementia-care

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On 30 November last year, I started out on a journey with a story of loss, a pledge of change, a friend to accompany me. I am still on that journey, but when I look back over the past eight months, I marvel at how far we have come, how many people have shown us the way, steered us out of dead ends and joined us, how an individual promise has become a collective endeavour. We are no longer just two middle-aged women but a group. We are a movement. This is how the world can change: with resolution, collective optimism and the kindness of strangers.

First, the story. On that Sunday in November, this newspaper (without whom…) carried a piece I wrote about my father, a dear man whose life was lived well and ended wrongly. For more than a decade, he had dementia, but his self-loss was gradual and his life, lived at home with my mother, his wife of 61 years, still contented and full of pleasure and gladness.

That is how I like to remember him now: feeding the birds, watering his garden, walking by the river, teasing his grandchildren, telling stories about his vivid past. He went into hospital with an infection and when he came out, more than four weeks later, he was painfully thin, immobile, incontinent, inarticulate, powerless, helpless and utterly lost. He lived another nine months, but he never came back from the mysterious, hidden land those with advanced dementia inhabit. He wasn’t living, he was slowly dying and the end of his prolonged death was in many ways a release.

Then the pledge. I wrote about my father for two reasons. First, it seemed horribly clear that if there hadn’t been restrictions on visiting (made even worse by an outbreak of norovirus that meant a virtual lockdown of the hospital), if we had been allowed to stay with him, feed him, walk with him, talk to him, read to him, keep him connected to the world, then he would not have so precipitously declined. And second, I knew that what happened to my father has happened, is happening and will happen to thousands of others like him, who are vulnerable, fearful and bewildered.

I have received hundreds and thousands of messages from people saying: yes, this happened to my spouse, my father, my mother, my friend too. Hospital is a hazardous place for those with dementia. And hospital is full of people with dementia. When I wrote about this last November, one in four beds was thought to be occupied by them; now the figure is one in three. There are some hospitals where they account for 50% of the beds. Some wards I have visited feel like a kind of Bedlam, where patients lie slack in their beds or, terrified and bewildered, call out, though what they are calling out for is impossible to know. It is heartbreaking and profoundly disturbing – and hard-pressed nurses cannot possibly give them what they need, which is so much more than medical interventions. They are frail, precarious and need vigilant attention and intimate knowledge; safety and love. It makes no sense to help the patient but wreck the person.

John’s Campaign asks, very simply, that carers of people with dementia have the same rights as parents of sick children to accompany them in hospital, to be their cognitive ramps, their experts in experiences, a voice for the voiceless. It makes practical and moral sense and I believe that in a few years’ time it will be unimaginable it was not always so, just as it is unimaginable now that parents were once separated from their children. But a few years is a long time for people at the end of their lives.

June, the 91-year-old mother of my fellow campaigner, Julia Jones, has Alzheimer’s. She has never spent a night in hospital and Julia, who is her primary carer, is determined (and I’d back her against anyone) that if her mother does have to be admitted, she will accompany her. If I am trying to rescue my father who can no longer be rescued, Julia is making sure her mother is kept safe and held on to. We have learned from the past to safeguard the future. John’s campaign is June’s campaign. June’s campaign is everyone’s campaign. Dementia is all around us and perhaps within us: we can no longer say “them”; we have to say “us”.

Carers do not have a duty to stay with people with dementia in hospital (they are often in desperate need of respite) but they must have the right, one that we believe should be enshrined in law. What’s more, all the evidence shows that compassionate and person-centred treatment, where carers are part of the team around the patient, has tangible results: they leave hospital sooner, they are readmitted less often.

This is not about money. It is about hearts and minds, about kindness, dignity and common sense

During the election campaign, everyone talked about joining up the dots in the welfare state – connecting social and medical care, making the boundaries between hospital and the outside world more porous. Doctors and nurses are kind, but bureaucracy is unfeeling. A sclerotic and infinitely complex system has evolved in which the humanity of a patient can be forgotten. Call a scared, demented person a bed-blocker and you are converting them to an object and an obstacle. Call them a burden and you are reducing unimaginable human need to procedural inconvenience. It is possible to meet a target, but demolish a person. My father’s leg ulcers were healed…

In the last week, there has been exciting news of a possible treatment for Alzheimer’s. But hope of a cure lies in the future. Our campaign is rooted in the tragedies of now. There is so much grief, loss and loneliness around dementia. Who could argue with what we are demanding? As it turns out, almost no one. But that doesn’t mean our job is done. Rules, inertia and the difficulty of bringing about practical change in a vast and multilayered institution are our enemies. But we have powerful and extraordinarily generous allies. In the first few months of the campaign, we received explicit support from many organisations, including Alzheimer’s Society, Parkinson’s UK, Carers UK, the British Geriatrics Society, NHS England, the Royal College of Nursing, Patient Opinion, Admiral Nurses and the Gold Standard Framework.

Policy-makers have advised us, networks connected us and politicians have put their weight behind our demands. Individual nurses, doctors and dementia leads in hospitals are our stalwart and indefatigable champions, making change happen on the front line. We have seen ward after ward and hospital after hospital implement our demands. There are carers’ passports and posters up on ward doors and walls announcing that carers are welcome (it’s not enough to allow carers in when they insist; they must be encouraged, appreciated, valued and made to feel part of the team). Doctors meet them on their rounds and they can be part of the decision-making process.

I have been to wards where there are communal eating spaces, places to sit and talk away from the beds, blankets of different colours, photographs above the bed and personal belongings beside it, even on one occasion a birthday celebration. Open the doors and life flows in from outside and with it a sense of possibility. Not a penny has been raised or spent. This is not about money – it’s about hearts and minds, about kindness and common sense, about dignity and respect and a sense that a life, no matter how near its end, is precious and that the old, the frail, the delirious and demented, those who have been sidelined and forgotten, must be remembered, attended to, cared for, made safe.

Above all, we have been inspired by individuals whose lives have in some way been blighted by dementia: our campaign is both for those who have the condition and those who care for them. Hundreds of thousands of carers look after people with dementia. They are the unrecognised, unsung, unpaid workers who act out of love and decency, while they themselves are in a state of drawn-out bereavement and mourning. It is a hard and often painfully isolated life. Many carers feel cut off and become lonely and depressed.

Several decades ago, the Observer led the campaign for the right of parents to stay with their children in hospital. And the Observer has from the outset championed our campaign that argues for the same rights for carers of people with dementia and frailty. It has given us a platform and a voice, without which we would simply have been two women shouting in the wilderness. Today sees the launch of the John’s Campaign page online.

This not only collects the stories about the subject, but also has a table that charts, week by week, the hospitals that are welcoming carers, along with a link to Patient Opinion website. Specific comments and experiences can be sent directly to individual hospitals. Excellent practice can be recognised and readers can put pressure on their local hospitals to welcome carers, if they do not already do so. Julia and I believe that by November 2016 (the second anniversary of the launch of the campaign) every acute hospital trust in the country will be on this table. This is our challenge to ourselves, to the hospitals, to the nation. Together, we can make this happen. We will.