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Campaign fights for family access to dementia patients in hospital

A flourishing UK campaign is using harrowing personal stories of nurses, carers and patients to help illustrate the plight of dementia patients who are being denied access to their loved ones during hospital stays.

Nicci Gerrard with her father John. His decline in hospital was the catalyst for John's Campaign
Nicci Gerrard with her father John. His decline in hospital was the catalyst for John's Campaign.

Harrowing personal stories from nurses, carers and patients are helping to illustrate the plight of dementia patients denied access to their loved ones during hospital stays, as part of a burgeoning campaign.

Evidence suggests that one-third of people with dementia who go into hospital for an unrelated condition never return to their own homes again.

Around half of all patients with dementia who go into hospital leave physically and mentally less well than when they were admitted.

A powerful effort to redress this situation is taking place in the form of John’s Campaign, with its call to accord carers of those with dementia the same rights as parents of sick children in hospital.

‘Scared, distressed, disoriented’

It is unimaginable now to think that children used to be left in hospital without their parents and NHS advice is that children adapt better if their parents stay with them for as long as possible.

However, many – equally bewildered – inpatients with dementia are deprived access to their carers due to strict hospital visiting policies, and this is what John’s Campaign aims to change.

More than a quarter of hospital beds are occupied by people with dementia

The campaign was started in 2014, after co-founder Nicci Gerrard's father was in hospital for five weeks and suffered severely restricted visits.

‘He went in strong, mobile, healthy, continent, reasonably articulate, cheerful and able to lead a fulfilled daily life with my mother,’ Ms Gerrard wrote in an article for the Observer newpspaper at the time.

‘He came out skeletal, incontinent, immobile, incoherent, bewildered, quite lost.’

Ms Gerrard says a ‘catastrophic and irreversible decline’ was brought about because her father did not have his loved ones around him.

She maintains patients with dementia are as vulnerable as children and can be as scared, distressed and disoriented as any child.

Experiences not unique

At a recent John’s Campaign conference, people affected by dementia shared similar, difficult experiences.

47%

of people with dementia who go into hospital are physically less well when they leave

Wife and carer Lyn Juffernholz said her husband Alan was living well with dementia when he was admitted to hospital with suspected pneumonia and she was not allowed to stay with him.

‘Alan became anxious and upset about being separated from me – he was scared, he had no time to get to know the staff, he was used to me being with him at night,’ she explained.

‘When I returned the next morning, Alan looked terrible. He was weak and could barely stand up as he had been trying to leave the ward all night.’

54%

of people with dementia who go into hospital are mentally less well when they leave

Ms Juffernholz explained she calmed him and he immediately fell asleep, exhausted, but staff still told her ‘forcefully’ that it was not visiting time and that she should leave until it was.

‘I’ve since tried to explain to anyone that will listen that carers of dementia patients aren’t visitors – they are like food and medication, essential to their wellbeing.’

Alzheimer’s Society chief executive Jeremy Hughes says a survey of 570 people affected by dementia revealed 92% thought hospital was a frightening place.

Moreover, only 2% thought hospital staff understood the specific needs of those with dementia.

Mr Hughes says: ‘John’s Campaign is about giving people permission to behave differently.’

To date, 396 hospitals have signed up to embody the campaign’s principles, but with more than 850,000 people in the UK living with dementia, campaigners hope more will follow.

Chief nursing officer for England Jane Cummings says: ‘I feel passionately about John’s Campaign – we want carers to be there [with their loved ones] all the time.

‘For me the seventh "C" is the campaign.’

Professor Cummings says nurses should think about how to use the new nursing and midwifery framework – Leading Change, Adding Value – to improve dementia care.

She says the framework's three main areas - health and well-being; care and quality; and funding and efficiency - could be used to improve outcomes.

‘Whenever I speak to nurses, they always tell me they can identify where there is waste – talk about it and come up with ideas to improve care,’ she urges.

‘I wanted to link John’s Campaign to the new framework so people can think about how to use [it] to add value.’

 

Overcoming barriers

Wishaw General Hospital chief of nursing services Gillian Corbett has implemented John’s Campaign in her organisation in Lanarkshire, Scotland, but it started on one ward.

‘It’s absolutely not easy at all, it’s fraught with challenges,’ she says.

‘Doing it for the whole hospital felt uncomfortable at the beginning.’

3 weeks

The average stay of a person with dementia but can be much longer if rehabilitation is a problem

Ms Corbett says some staff were concerned there were not enough staff to care for patients, let alone relatives too.

Others had confidentiality concerns on behalf of patients and some were apprehensive about being ‘watched’ as they worked.

‘At any given time in any one ward, there may only be one set of relatives who want to be there,’ she reassures others who may be considering implementation.

British Geriatrics Society president David Oliver, a consultant in geriatric medicine at the Royal Berkshire Hospital in Reading, says there are about six million carers in the UK caring for ageing loved ones.

‘Carers know their person best,’ Professor Oliver says, outlining the importance of gearing up hospitals to meet the demands posed by rising numbers of older people.

‘I would never go back to not having fully open visiting.’

Professor Oliver says he feels nurses are often extremely concerned about confidentiality but with the right support this should not be an issue.

‘A climate of fear has been embedded by the regulator and sometimes hospital management: they need their matron or director of nursing saying they are not going to be criticising [them].’

Royal College of Nursing professional lead for long-term conditions and end of life care Amanda Cheesley explains why John’s Campaign is important at the end of people’s lives.

Amanda Cheesley

Ms Cheesley says people who are dying feel lonely and scared without their loved ones and it is crucial not to leave families and carers with bad memories.

'Never be responsible for that happening: as nurses, doctors, porters, it doesn’t matter - we have absolute responsibility to do the right thing by the people we care for.

‘The worst thing about dying badly is that memory lives forever,’ she stresses, saying that, although hugely proud to be a nurse, sometimes she hears horror stories that make her ashamed.

‘There are some who should not be allowed to be nurses and some who have lost their way and can be helped to do the right thing again.

‘For me it is all about good leadership.

‘We mustn’t let confidentiality, or risk, or lack of time, or will prevent us from doing the right thing.’

 

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