A campaign to persuade hospitals to allow the loved ones of people with dementia to stay with them has signed up 100 hospitals to the idea.
The figure marks a milestone in John’s Campaign – named after the father of writer Nicci Gerrard, who launched her crusade in the Observer after his death last November. Watching John Gerrard go into hospital articulate, continent, mobile and happy – and leave four weeks later inarticulate, incontinent and immobile and skeletal, led his daughter to start working to make hospitals more compassionate places for people with dementia.
The campaign wants carers of those with dementia to have the same rights as parents of ill children to accompany them in hospital. Carers have a crucial role in looking after those patients who now occupy one in three hospital beds and who need the vigilance and intimate understanding that hard-pressed nurses cannot give them, said Gerrard. “It is a matter of common sense and also of compassion and decency. Patients are also people, valuable and precious.”
In 10 months, the campaign has won support from politicians, charities, health professionals and carers.
“John’s Campaign is single-issue, but it is deeply rooted in the movement for more compassionate and humane care,” said Gerrard. “There is no law that says a carer should be able to accompany their loved ones while in hospital. There is no duty for a carer to do so – they are often in great need of respite. But there is a moral right that is increasingly being recognised. In these pioneering 100 hospitals, carers will now be made welcome.
“They might be given a carers’ passport; in some wards, they might be given tea, or even a reclining chair or bed. But the decisive criterion is that they have access at all times.”
In Scotland, open visiting has been enshrined in policy but more action is needed to enforce practice, said NHS Scotland’s chief nursing officer Fiona McQueen who supports the campaign.
“With regards to relatives staying with a loved one with dementia, NHS Scotland has a policy on open visiting and I expect anybody whose loved one has dementia to be made to feel welcome to stay on the ward day and night.
“We have developed a 10-point action plan for dementia care in hospitals and Healthcare Improvement Scotland inspect hospitals against these standards. This action plan is looking at working as an equal partner with families, friends and carers, as well as minimising and responding to distress.
“What the campaign is asking for ought to be happening on a daily basis in NHS Scotland, and a number of health boards are actively considering signing up to the campaign. In Scotland, there have been significant improvements in diagnosis, post-diagnostic support, and care of people with dementia in our acute hospitals.”
McQueen has led work to improve standards of care for people with dementia and has overseen more than 500 people trained as Dementia Champions.
Dr James Munro, CEO of Patient Opinion, added: “Patients and carers have traditionally been seen as a burden on the NHS, instead of a source of insight, energy and motivation for change. John’s Campaign is a perfect example of how one person’s story can speak for many – and with a simple change, can help make a better health service for everyone.”
There are still many hospitals to go – but Gerrard, along with the campaign’s co-founder Julia Jones, hope that by November 2016, the second anniversary of John Gerrard’s death, every hospital in the country will be on the list.
