The right to stay with people with dementia

If I have a single regret about the day in 2014 when Nicci Gerrard and I decided to found John’s Campaign it’s that we didn’t at that same moment buy significant shareholdings in the firms that make pull out beds and recliner chairs.

Need for change

We were insisting that (willing) family carers of people with dementia should have unrestricted access 24/7, whenever they were needed most. Nicci, thinking of her father, John, a genial and gentle man, knew that what he had needed – and had been denied by restricted visiting and knee jerk infection control – was the companionship and stimulation of his family during the day. The hospital staff did their best, but even their best was limited.

“They healed his infection, they put food and drink beside him, almost all of them treated him with respect and genuine kindness. But they left him to himself and couldn’t spend hours making sure he ate and drank. They couldn’t brush his teeth and shave him and comb his hair and read poetry to him, do crosswords, play chess, talk to him, hold his hand, tell him he was safe, keep him anchored to the world he loved.” (Observer 29.11.2014)

Family carers of people with dementia should have unrestricted access 24/7, whenever they were needed most

I was equally certain that what my mother, June, would need if she were ever to be admitted to hospital would be reassurance during the night. I’d recently spent a week in an orthopaedic trauma ward and had witnessed the distress of bewildered dementia patients.

Mum was 90 then and living in extra care accommodation 60 miles away. I was getting used to the late night calls to try to soothe her when she’d thrown a pot plant at a plate glass door or swung a fire extinguisher at the care staff. I was driving miles at all hours to restore calm. My mother, left unsupported overnight in hospital, didn’t bear thinking about.

Both Nicci and I expected that, if our children were in hospital, we would be welcome to stay with them by night or day. This right had been won by our parents’ generation through the campaigns of the 1950s-1960s. We believed our campaign was payback time, therefore, a potential 24/7 welcome was the single point on which we would not comprise.

I wonder whether nurses in the past realised how insulting some spouses, especially, have found it when they have been expected to get up and leave a person they love, in distress, at the ringing of a bell?

This worried many of the hospital staff who were otherwise ready to support us. Would they be fined for mixing genders? What about safeguarding – should carers be security checked?

All we could say, again and again, was that no carer would want to stay if they weren’t quite certain it was necessary. And if it was necessary they’d be saving staff 1:1 supervision time and ensuring the rest of the patients had a quieter night. It would be worthwhile doing whatever was necessary to accommodate them. Think of them as part of the team.

When our pledge list opened in summer 2015 so many of our early supporters warned that they could promise “no special overnight facilities”. A great way of keeping people out? When Nicci’s mother suffered a stroke in France and Nicci refused to leave, the French hospital offered only a stool beside the bed, leaving Nicci with a bad back for days afterwards.

But why should her frail, widowed mother have been left alone in a foreign ward? She’d had one suspected stroke. She could have had another. She could have died.

Changing practices

English hospitals are made of kindlier stuff. All of the English acute trusts have now pledged to our campaign and I have been checking their pledges before presenting them all to chief nursing officer Jane Cummings on 11 June, the first day of Carers Week 2018.

Almost everyone who had that grouchy “no special overnight facilities” phrase has taken it out. Many are drawing attention to their provision of comfort packs and carers’ rooms. I’ve asked for images to demonstrate practical implementation and could fill a catalogue with the freshly purchased camp beds and recliner chairs. All that talk of “I suppose we could borrow one from paeds if we had to,” has gone, thanks, usually to the efforts of hospital charities.

When our pledge list opened in summer 2015 so many of our early supporters warned that they could promise “no special overnight facilities”

If Nicci and I had invested our pensions in the manufacture of ward bells, however, we would be rapidly approaching penury. The other unmistakeable trend within the updated pledges is that hospitals are extending visiting times for everyone – and an increasing number are doing away with them altogether.

This is not only an English trend, it’s also observable in Wales, and Scotland’s nurse directors are officially committed to open visiting for all. It’s part of their “person centred” policy but also has significant safety benefits.

All of the English acute trusts have now pledged to our campaign

Carol Andrews, a senior charge nurse managing an orthopaedic trauma ward at Monklands hospital in Lanarkshire, signed up to John’s Campaign and then declared her ward “open all hours”. For a year she recorded her falls, incidents of stress and distress and hospital acquired pressure sores.

All of them plummeted and so, unsurprisingly did complaints. I wonder whether nurses in the past realised how insulting some spouses, especially, have found it when they have been expected to get up and leave a person they love, in distress, at the ringing of a bell? When Carol Andrews declared “The bell is in the bin”, all of us in her audience cheered.