Now we can say to the scared and frail: you needn’t be alone

Living with dementia: now we can say to the scared and frail: you needn’t be alone

John’s Campaign to allow carers to be on the wards with their loved ones gets official backing

 Schemes allowing carers to remain with dementia patients in hospitals are already in place in some parts of the country. Campaigners hope to extend it to all hospitals. 

The times they are a-changing. The tide is turning. A culture that for so many years has been dominated by diagnosis and cure, targets met or targets failed, is softening. The closed world of the hospital – a place of experts, of rules and systems and awesome bureaucracy – is opening up, letting the outside world flow in.

There’s a way in which we have come to think of doctors and nurses as part of the formidable medical endeavour to hold death at bay whatever the cost; death is the ultimate failure. Obituaries sometimes talk of people “losing the battle” against their illness. But it isn’t just a battle, it’s a certain destination, and we need to think of how we travel there, not just at what point we cross the threshold.

One of the crucial issues facing us now, with our ageing population and the growing number of people who have dementia, is how we live the last part of our life, how we care for those who are frail and powerless, how we will be cared for in our turn, when it is our time of need.

Yes is a very fine word, a word of optimism and of change. Last week, I went with my co-campaigners Julia Jones and Francis Wheen, and with our unflagging parliamentary patron Valerie Vaz to whom we owe so much, to the House of Commons. We wanted Norman Lamb, the Liberal Democrat minister for care and support, and Andy Burnham, Labour’s shadow health secretary, to pledge themselves to the aims of John’s Campaign: that the carers of those living with dementia should have the right to accompany them to hospital, just as parents do with their sick children.

We believe that within a few years it will be unimaginable that there was ever a time when this was not the case, and that baffled, vulnerable, often very scared people were left alone in a place that is intimidating for even the most robust of us. However wonderful nurses and doctors are – and they almost always are, overworked and tireless and kind, and also recognising the need for change – people with dementia need their experts in experience (if they are fortunate enough to have them in the first place).

Hospital is a dangerous place for those who live with dementia. While there, they need nurturers as well as nurses; dignity and vigilant attention alongside the drugs. They need a familiar presence to keep them anchored to the world. My father’s leg ulcers were healed in hospital, but he came out like a ghost who haunts me still.

We went with documents and statistics, ready to argue the case. But yes, said Norman Lamb, almost before we began. He promised to write a letter to all hospital trusts promoting the idea. And yes, said Andy Burnham, who wants to strengthen the NHS constitution on this specific point, and has committed himself to adding it to Labour’s manifesto.

Both agreed that what we were asking for was a matter of common sense, practical necessity, decency and compassion – a rare instance where the costs in both financial and human terms are none and the benefits enormous. I could have wept with gratitude and relief.

The campaign began with a single story, told in this newspaper. People responded to it with a surge of kindness, for which I will be forever grateful, and of immediate recognition.

 There can be few in this country whose lives have not been touched, blighted, turned upside down, by dementia.

For three and a half months now, we have been hearing other people’s stories: stories of partners, children, friends, carers of all kinds; stories of loneliness, heartbreak, outrage, devotion, and of steadfast love, a love that holds on and endures.

We have had messages of mourning, that describe what it is like to be left with the legacy of knowing that your loved one died lonely, isolated and scared. We’ve had messages praising particular hospitals, where the doors are opened and families made welcome.

 We’ve been given a glimpse into the hidden, unpaid workforce of carers. Many of them have given up jobs to look after those they love, or certainly adjusted their working patterns. Many are deeply lonely and alone themselves – not just because it’s a scary truth that once a person has dementia, friends tend to drop away. Memory binds people together, gives them a shared history. Relationships are built on memory, day by day. 

When it starts to fail, that intimacy of experience goes. There are thousands of people going through this solitary experience of loss – we need to find a way of giving them, giving each other, a sense of community. To say: you’ve done well. To say: it’s hard and sometimes you’ll be imperfect. To say: you are not alone.

But some of the stories have been joyful. For instance: at the Royal Sussex County Hospital, the terrific Lucy Frost (dementia champion and John’s Campaign champion too) showed me round a model ward – brightly painted, welcoming to carers, de-institutionalised, with a communal space – and told me about a patient who had had a birthday the previous day but received no visitors.

When asked for a gift idea, the patient requested a treacle tart, a reminder of the past. Lucy raced to a nearby shop and bought one, and the nurses and some of the other carers stood round the bed and sang Happy Birthday. There were, I think, tears of gratitude from the patient; certainly several other people wept.

This is what hospitals should be like: letting life into the closed spaces, letting kindness in, allowing the rescue impulse to flourish unimpeded, rather than muffling it with targets and regulations. A patient is not just an illness – a cancer or a fracture or an infection. A patient is a person, and precious right up to the moment of their death.

All the way through the campaign we have received an extraordinary amount of advice, help and support. People with no time have been unstinting with their time. I wish I could name names, but there are too many of them – a roll call of generous men and women working to make things better and change the way we think about old age, frailty and death.

For a long time there was a stigma about cancer. There is still a stigma about dementia. People hide it from their friends and from themselves, because it is scary and it feels in some way shameful: the diminution of control over one’s life, the self’s loss of the self, the mind’s disintegration and the solid ground breaking up. It is what we most fear for those we love and for ourselves, and so we often try to hide from it.

But that’s all changing: people living with dementia are bravely speaking and writing about it. It is the subject of films and plays and novels and poems. It is in everybody’s world now and unignorable. Many people’s stories have unhappy endings and many people die in hospital, alone and full of fear. This story can have a different ending, and it must.