According to care charity John’s Campaign, families are the ‘third force‘ in residential care. So, how could your care home, and residents, benefit from being involved with John’s Campaign? Co-founder Julia Jones explains how they work…
John’s Campaign started as a campaign for carer access to people with dementia in the acute hospital sector. Co-founder Nicci Gerrards father, Dr John Gerrard, had been living well with Alzheimer’s for almost ten years when he was admitted to hospital to have treatment for his leg ulcers. It was a hospital with old-fashioned restricted visiting hours, which were further curtailed by a norovirus outbreak, and a subsequent knee-jerk ‘no visitors’ restriction. He went in strong, mobile, smiling, able to tell stories about his past, to work in his garden and help with things round the house. But, no-one had quite realised the extent to which his family support had helped him maintain these abilities. So no-one challenged the visiting restriction, and no-one in the hospital thought it odd that Dr Gerrard was simply lying in bed, passive, bewildered, almost certainly in a dangerous state of hypo delirium, because no-one in the hospital knew that he wasn’t always like that. They didn’t realise he could have been enjoying poetry or a game of chess. There were no rehabilitation beds available, so they decided to keep him in hospital for longer.
Five weeks later, Nicci and her family got their father home. She describes the man she brought home as: “Skeletal, incontinent, immobile, incoherent.” He barely knew those around him and required 24 hour care for the rest of his life. “Would we have left one of our children unvisited in hospital for five weeks?” Nicci asks. And so, after Dr Gerrard’s death in November 2014, John’s Campaign was born, insisting that the family carers of people with dementia should be welcome in hospital at any time. Not just allowed, but welcomed – and with 24/7 access if necessary. Family carers (whether or not they are actually ‘family’) have a wealth of knowledge to share on behalf of the person who is no longer able to communicate reliably for him or herself. They are an essential part of that person’s team.
Superficially, the situation in residential care feels quite different. Very often someone is moving into a home because they can no longer manage in the community, even with the help of their family. Family may be exhausted, despairing, guilt-wracked. Perhaps it seems kind to wave them away: “Don’t worry, we’ll take it from here. You go home and take a break. We’ll let you know how s/he gets on.”
Alternatively you could think that families and friends are needed more than ever – but they are needed differently. They are needed to share information about the new resident, they are needed to maintain his or her sense of self-worth, to reassure them that they are still loved, they have not been abandoned. They are needed to bring ‘familiarity’ to these strange surroundings.
Ideally, the shared responsibility with the care home can offer family members a chance to rediscover quality in a relationship that may have been damaged by illness, stress and tiredness.
I can imagine a care home manager sighing with exasperation at this point. “All this is true but we can’t make the families come. There’s nothing stopping them but they just don’t bother!” Thats a very good reason to join John’s Campaign. Be part of a national movement, put a certificate in the hall, write a letter to your families, and tell them that you’ve done this thing because they matter, you need them, their relative needs them, they need to stay part of the team. Families are the ‘third force‘ in residential care – don’t give up on them.
You can only join John’s Campaign if you know you welcome families at any time (with all sensible security arrangements, obviously). You can then pledge your welcome in 50 words or less by emailing . You’ll be added to the Observer newspaper national list and to the interactive map on our website www.johnscampaign.org.uk
