What is John's campaign?
The British Geriatrics Society supports the John Campaign, launched by Nicci Gerard and Julia Jones who are lobbying to give carers of demented people the right to accompany them in hospital. Here we describe the history and progress of the campaign.
Writing for the Observer, Nicci Gerard, journalist, writer and originator of John’s campaign says: 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 frightening 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.
The introduction to Nicci’s John’s Campaign website reminds us that the battle to enable a parent to stay with a sick child in hospital was won over fifty years ago by the campaign group Mother Care for Sick Children, and current NHS advice to parents is now clear: “Stay with your child as much as you can.”
People with dementia are not children, Nicci goes on to say. They are adults with a lifetime’s experience. Their needs are more complex, yet they are not entirely dissimilar. They are vulnerable and they can be as distressed and disoriented as a child. Their ability to understand and communicate with strangers may be reduced by factors such as deafness or poor eyesight as well as by mental impairment. They may have mobility and continence problems in addition to whatever medical condition has made hospitalisation necessary. The effect of a hospital stay can be catastrophic for a person with dementia — as it was for the man whose experience prompted this campaign, Nicci’s father.
[His condition followed] a slow decline with accelerations when he was ill or upset. At the beginning of February 2014, aged 86, he went into hospital because he had infected leg ulcers which weren’t responding to antibiotics. He was there for five weeks during which time he deteriorated drastically. He went into hospital strong, mobile, smiling, able to tell stories about his past, to work in his garden and help with things round the house. He was able to feed himself, to go the lavatory, to keep clean, to have a good kind of daily life in spite of his Alzheimer’s. He came out skeletal, incontinent, immobile, incoherent. He required 24-hour care and barely knew those around him. He wore a nappy, could not stand up or walk, could not lift a mug to his mouth or put words into a sentence.
His family feel certain that if he had not lain for five weeks in hospital without people he knew to tend and comfort him, he would not have descended into such a state of incapacity. The individual nurses and doctors were kind, conscientious, respectful, but they had other patients so of course they couldn’t sit and talk to him, read to him, make sure he ate, hold his hand, keep him attached to the world.
Writing about her father’s experience - Nicci refers to it as trying to rescue her father who is now beyond rescue - she and Julia Jones, her co-campaigner, announced John’s campaign which lobbies to give carers of demented people the right to accompany them in hospital in the same way that parents of ill children may do. These carers could feed their loved ones, keep them mobile and ‘be their voice and memory bank, anchoring them to the world’.
The response to the campaign was, says Nicci, ‘inspiring and heartbreaking in equal measure’.
Stories poured in, full of anger, guilt, powerlessness and loss, ones of encouragement, optimism and advice, and they are still coming. It seems that everyone we meet has a tale to tell and that we have reached a point in our ageing society where no one is untouched by the blight of dementia.’
Nicci emphasises that the people contacting her do not attach blame to staff in the hospitals. It is recognised that they are coping as best they can in ‘an unsustainable situation.’
The campaign is ongoing. Nicci had argued, “there is a door that has to be opened – pulled by hospital staff, pushed by the public”. She and Julia have visited NHS trusts and dementia organisations up and down the country, lobbying and persuading. What they have discovered is that in many hospitals the door is more than ajar, and in a few it is already wide open. We hope that by making her campaign known amongst our membership, it will become general policy within hospitals that carers of people with dementia can make their sojourn in hospital considerably less destructive than it might otherwise be.
Links to John's Campaign: http://www.theguardian.com/profile/niccigerrard