Not long ago, I met an old woman whom I can’t get out of my mind. She was wandering a residential street asking people where her husband was – she needed to find him so he could take her home. But her husband had died many years ago and was buried in a nearby churchyard. Another woman I came across in a nursing home stumbled toward me saying over and over: “Hymns of comfort, hymns of comfort.” I held her arm and said someone would come to help her soon. Her reply was a lament: “No one is coming. No one is coming ever.” No one and never: what must it be like to feel so helpless, so lost and alone?
Against these forlorn images I set more hopeful ones: the merry birthday tea party in a hospital dementia ward, say, where patients, carers and nurses sang Happy Birthday around a treacle tart. Or the boy walking with his grandfather in the dementia garden of a provincial hospital. Or the middle-aged daughter sitting by her mother’s bed in a ward, softly singing to her as she fell asleep; perhaps they were songs the old woman had heard as a child.
Dementia – the disease of our century, the sniper in everyone’s garden now – makes us ask what it is to be human, and what we owe each other. Dementia is pitiless, but people are not.
John’s Campaign, which fights for more compassionate care for those who live with the illness, is rooted in a belief in our collective responsibility and essential kindness. It began with an individual ending, as an act of grief and mourning, when my old father died. It bears his name, and his particular story – which is also the story of thousands of men and women up and down the country – was its catalyst.
He had a long and good life, but he did not have a good ending. In his last nine months, he was alive but not exactly living, rather existing in a strange, twilit world, like a ghost. My mother was bereaved before she became a widow – and then she was bereaved all over again. Mourning the living is a hard kind of sorrow.
I’ve written about my father’s death in this paper before: how he lived for many years with dementia, but contentedly, at home, kept safe in the circle of family and friends. How he went into hospital for leg ulcers, stayed too long in a ward full of people with dementia where hard-pressed nurses could not possibly give him the attention he needed, where visiting hours were restricted and an outbreak of norovirus meant he went for days on end with no one allowed to visit. How in that month, immobile, malnourished, dehydrated and often alone, he lost all capacity – lost his bearings, his connection with the world, became untethered and slid away from us, out of the harbour and into the wild open sea. How he came home (but never really came home, never fed the birds again or walked by the river) and spent the next nine months dying, and there was not a thing to be done except watch over him as he slowly left us, because it was too late. We were too late.
A few weeks after my father was released from dying into death, my friend and the co-founder of John’s Campaign, Julia Jones, asked me why on earth hospitals ever restricted access to carers.
Carers are not visitors. They are the voice, the memory, the familiar face, the home that follows a person with dementia should they have to leave home.
Julia’s question startled and shamed me: it was so obvious but had never occurred to me. There are rules, and largely we obey them, a culture, and largely we don’t notice or challenge it, but live inside its invisible walls.
Of course carers of those with dementia should have the right to accompany those they love into hospitals or any other institutions. A growing body of evidence demonstrates how beneficial the presence of carers can be in hospital: fewer falls, less malnutrition and dehydration, shorter stays – above all, less catastrophic cognitive impairment. But even without this, it’s a matter of common sense, of compassion, of human decency.
And so, three and a half years ago, in this paper, a campaign was born, and the Observer’s generous and steadfast support has been vital to its success. We started from zero: no track to follow, no knowledge of how to run a campaign, no real sense of how the NHS works or how to negotiate its labyrinthine bureaucracy, no idea of who to contact or how, no time to do it in anyway, no budget, no clue.
We knew the problem: hospitals and similar institutions are very dangerous for people who are frail, confused and scared, especially when they are there alone. We had a solution, costing nothing, harming no one, benefiting everyone, clear as water, plain and right: give carers unrestricted access, and welcome them as valued team members.
We had the necessary outrage: how can thousands of frail men and women be wrecked in the very places that are trying to heal them? We had hope – though sometimes it got a bit dented, when well-meaning people told us kindly across their sleek desks that it couldn’t be done and we’d burn out within a year.
Innocence was our secret weapon: if we had known more, we probably wouldn’t have started out on this journey to push open closed doors and, in so doing, help change the culture of the NHS. Hospitals are traditionally places of cure, but many people in hospital today cannot be cured. They need to be cared for. People who have dementia and frailty must be treated as precious beings, not just objects in a bed. In the end, we are all vulnerable and at the mercy of each other; we have to help those in need, and be helped in our turn.
At first, Julia and I thought that because what we wanted was so simple, it would be simple to bring it about: a law could be passed, an edict issued. Someone very senior (Jeremy Hunt, where were you?) could say “let this be done” and hey presto.
There were moments when we felt we’d found the magic key: when I went on The Andrew Marr Show alongside David Cameron, then PM all those light years ago, and he supported our aims; when NHS England officially endorsed the campaign; when Norman Lamb (then minister of state for care and support) and Professor Alistair Burns (then and still NHS England’s national clinical director for dementia and older people’s mental health) co-wrote a letter to every acute hospital’s chief executive urging them to implement the principles of the campaign; when the MP Valerie Vaz tabled an early day motion in parliament; when Andy Burnham promised to implement the campaign when he became health minister; when one by one all the medical bodies supported us; when Sir Mike Richards, chief inspector of the Care Quality Commission, supported us; Professor Jane Cummings, the chief nursing officer of England, gave us her generous help; when senior men and women in leading charities reached out to us… . In the end, these commitments weren’t actually magic keys, but they all helped build our rickety raft into a solid vessel.
For change to become embedded in the culture, it had to happen at grassroots level. The success of our campaign has come about because of overwhelming voluntary support from the carers, the nurses, the organisers, the doctors, the people who worked for charities, the doers and the thinkers – and from those who live with dementia. A great army of good, kind, generous, tireless people, led by those individual nurses who became passionate advocates for the campaign and put it into practice on the frontline, in the hospital wards. We have met many heroes and heard many stories: some of these are of tragedy and loss, but there are also ones of courage, kindness, redemption and hope.
Three years ago, the Observer published a list on its website of all the wards and hospitals that had signed up to John’s Campaign, along with their individual pledges. Our single criterion is that carers should be made welcome; after that, hospitals can implement the campaign in whichever way they want: carer’s passports; posters on doors; reclining chairs; rooms set aside should they need to stay the night; welcome in the pre-op room; meals or cups of tea. Reduced or free parking. Leaflets. Maps. Posters. Pets allowed to visit. Countless, imaginative ways of making carers feel recognized and of making vulnerable patients’ lives less scary– ways of making hospitals safer and kinder places to be.
At first, the list was rather short. We felt jubilant when it passed the 100 mark, thrilled when it went to 200. Julia tirelessly approached dementia leads and chief nurses, and worked out where the largest gaps were (she would ring me to say things like: “I’m feeling rather cross with the north of England today”). Her son Bertie created and updated our website.
Ward by ward, hospital by hospital, the list got longer, the gaps smaller, the geographic inequality a little bit less. More than 1,000 wards, hospitals and other institutions have now pledged their support.
Today, as the NHS approaches its 70th birthday and on the eve of Carer’s Week, we can announce that all the NHS acute trusts in England have now made pledges to unrestricted visiting hours for people with dementia.
Tomorrow, we will present a book of pledges to Jane Cummings. The victory is inevitably partial – we are talking about England not the UK, acute trusts not all trusts. Within each acute trust there are hospitals and wards that have not yet signed up. The ones that have vary in the quality of implementation.
The right we demand is still not universal, and such inequality is unacceptable. But this a real, tangible milestone, and also a demonstration that the culture around care for those with dementia and frailty is changing. Hospitals that do not welcome carers are the exception rather than the rule.
I understand that I started out three and a half years ago trying to rescue my stoic, modest, honourable, maverick father, who was beyond all rescue and harm. My way of mourning (or perhaps of holding mourning at bay) was to do something, rather than simply to endure the natural buffets of grief, and let the great old world turn and time carry me through. I needed to atone.
But John’s Campaign very quickly shook itself free of my personal guilt and sadness and took on a grand momentum. It has a life of its own now, beyond Julia and me, because it belongs to everyone who supports and believes in it. It’s about recognizing the unquantifiable value of carers, about giving dignity and respect to people who are vulnerable, about helping people have good endings. It’s about how we live, how we die, and how we help each other on this journey.
