John's Campaign - A carer's story
Twenty months ago, Julia Jones and I started John’s Campaign. I remember the day. My father had recently died after his terrible last year of drawn-out death following a catastrophic stay in hospital. Julia’s mother, who is in her nineties and has dementia, was (and is) still alive, but Julia was fearful about what would happen were she to go into hospital. Julia and I said to each other: surely, shouldn’t all carers have the right (never the duty) to accompany their vulnerable loved ones in hospital; shouldn’t all people with dementia have the right to be accompanied?
From that frail conversation, our campaign was born: two middle-aged women bashed about by recent experiences, with no expertise, no time, no network of support, no idea of the work it would involve, the energy it would require or the bloody-minded optimism, making a pledge that what had happened to my father in hospital must not happen to other people’s fathers, mothers, partners, friends….
The time was right. From two women in a kitchen to a national movement for change in the way we think about the closed and often intimidating world of the hospital. The Observer was our platform, and has remained a generous partner. The Alzheimer’s Society supported, advised and helped us from the start. Other charities joined them. So did nurses, doctors, carers, managers, kind and hard-working groups and individuals who from experience or out of sheer decency wanted to make care more compassionate for those who are vulnerable and fearful. If carers are not simply allowed but welcomed as valued members of the team of support around a patient, then quantifiable benefits follows: fewer falls, less malnourishment and dehydrations, swifter discharge, longer periods before readmission, more time for hard-pressed nurses to nurse. Above all (though less quantifiable), when a relative or carer is there, their intimate knowledge means that a patient is more likely to receive joined-up care and be treated as a person, with respect and tenderness and dignity.
We have come a long way. Over 330 wards, hospitals or hospital trusts have signed up. We were given a CQIN, financially encouraging hospitals to implement tour demands. We are to be part of the CQCs inspection criteria. On a more intimate level, there are posters on ward doors up and down the country, and indomitable nurses have put the campaign into humane practise.
But there’s a long way to go. A vast bureaucracy is inevitably slow to alter; change however beneficial, is always painful. For decades, we have thought of hospitals as closed spaces where we leave our authority and autonomy at the door and put ourselves into the hands of the experts. Hospital staff need to welcome carers; carers need to insist on their right to be welcomed – and that takes a special kind of confidence.
A few months ago, I was in France with my mother, who is eighty-three, very frail, light as a bird and blind as a bat, who’s had cancer, numerous strokes, chronic and disabling pain in her back, but who is utterly indomitable. We were eating in a restaurant, when, halfway through a sentence, she fell silent, looked puzzled. Her eyes closed, her head tipped and she slid towards me. Her breathing stopped and we thought she was dead.
I went with her in an ambulance to the nearest hospital. When we arrived, I tried to follow her as she was rushed though the swing doors but was held back – it was against the rules. No rule should stop you from being with a loved one who seems on the point of death. I made a fuss in loud, incorrect French. I tried to force the doors open. People in the waiting room started to cheer me on. I was at last let through. My mother wasn’t dead but she was obviously in a bad way, lying on a bed with tubes and wires and monitors and electronic bleeps. I explained to the doctor about her complicated medical history and then I was told to leave again. I refused. I was informed it was strictly against the rules. I said I wasn’t going to go; I’d made a promise in the ambulance that I would stay with her.
It’s always nerve-wracking to disobey doctors and nurses (particularly in a foreign language). But I had been too obedient in the past, too passive in the face of authority. I remembered my father, who I failed to stay with. I remembered Julia saying to me that if her mother was admitted to hospital she would if necessary chain herself to the bed. I remembered John’s Campaign. If I didn’t insist on my rights, how on earth could I expect others to? A more senior doctor was summoned who said I could remain. I sat on a small stool all night and in the morning she opened her eyes and asked where on earth she was and could she now go home.
If it was hard for me, who campaigns on the issue, how hard is it for others? But we need to remember that while hospital staff are experts, but so too are carers; experts in experience and in love. They are crucial to the well-being of demented, delirious, frail, vulnerable patients. They should be recognised. Welcomed. Looked after. Respected. Cherished.
Nicci Gerrard is a novelist, writing solo books and, with her husband, psychological thrillers under the name of Nicci French. For nearly twenty years she was a journalist with The Observer. Over a year ago, along with her fellow campaigner Julia Jones, she launched John’s campaign, named for her father, which asks that carers of those with dementia have the right to accompany them in hospital. To find out more about John’s Campaign, visit the website: www.johnscampaign.org.uk . There is a conference, hosted by Imperial Healthcare Trust, dedicated to John’s campaign on October 12th.