Although specialist Admiral nurses can prevent hospital admissions and save money, there are only 200 in the UK and many counties have none at all
ate and Jon Henderson have devoted the past decade to looking after their 67-year-old mother, Sally, who has dementia. At first the siblings, who, until this February shared their bungalow in Rottingdean, near Brighton with her, were able to cope. But as Sally’s condition worsened, she began to lose her balance and had to use a wheelchair. Her speech deteriorated so much that Jon and Kate had to anticipate her needs by reading her body language. They installed a wet room, a disabled access door and a hospital bed with rails.
Last year, constant urinary tract infections made Sally more confused and a bad cold led to acute illness because she could not clear her throat. Kate was so worried she began sleeping on an air bed in her mum’s room.
The Hendersons have both experienced bouts of depression and the relentless physical and emotional toll of caring for their mother 24/7 left them exhausted. “We were running on empty,” says Kate, 36. “We didn’t have a life and we got to the point where we thought, we can’t do this alone – we need help.”
So when Lucy Frost, dementia lead at Sussex community NHS trust, referred them to a specialist dementia nurse in 2016, they leapt at the chance. Admiral nurses, trained and supported by the charity Dementia UK, focus on the family carers of those with the condition.
The Hendersons’ Admiral nurse, Helen McBryer, helped them secure state funding [continuing healthcare]so their mum could stay at home, as well as providing much needed emotional and practical support. And when they decided it would be best for Sally to move into a nursing home, McBryer helped them find one.
“You have to be emotionally tough and experienced to help them with everything from symptom management to securing an occupational therapist or state funding,” says McBryer, who looks after 60 families. “When a carer is drained from looking after someone, you refill his or her jug.”
Without McBryer, the Hendersons say their lives would have fallen apart. “I don’t think we could have got to this place without Helen,” says Jon, 41. “She is our rock”.
The Hendersons’ story is far from unique. New research shows that Admiral nurses not only improve the lives of those with dementia and their families, they also save cash-strapped NHS and local authorities money because they reduce the numbers going into care homes and inappropriate acute hospital admissions, as well as cutting referrals to GPs and psychological therapies.
“Not everyone with dementia needs an Admiral nurse,” says Hilda Hayo, chief admiral nurse and Dementia UK’s chief executive. “But because dementia is progressive we are always helping the family to prepare for the next phase.”
Sutton’s CCG calculated that hiring one Admiral nurse (March 2014-March 2015) saved an estimated £296,466, through avoiding or delaying care home and nursing home admissions and avoiding acute hospital admissions. “The economic benefits are there for all to see, but more importantly, the service ensures high-quality care for those who live with dementia, while providing ongoing care and support to their families,” says Ruth Dombey, leader of Sutton council. “Admiral nurses are a great way of training families in how to deal with certain situations.”
South Norfolk CCG, meanwhile, claims its three Admiral nurses saved £440,000 in health and social care costs between March and December 2013.
You have to be emotionally tough. When a carer is drained from looking after someone you refill his or her jug
“Admiral nurses deliver a great service which has a big impact on the quality of life of people living with dementia in Norfolk – and their loved ones,” says Dr Liz Waddy, dementia clinical lead for South Norfolk CCG .
Southampton General was the first acute hospital in the country to introduce an Admiral nurse service in 2012 – it now employs two. It is one of 12 hospitals throughout the UK to provide this service and has also created a 28-bed dementia-friendly ward that is specially designed to minimise the confusion that those with dementia can experience in hospital environments.
Jeni Gleeson, Admiral nurse clinical specialist at Southampton and her colleague, Jackie Petley, support clinical teams to improve the hospital experience for people with dementia and their families. “As a result of this approach, the increased confidence of trust staff to care for this patient group has led to a reduction in the cost of employing agency staff,” says Gleeson.
NHS England acknowledges the benefits that specialist dementia nurses can bring. Alistair Burns, NHS England’s national clinical director for dementia, describes Admiral nurses as invaluable. “They may delay, or even avoid, hospital and care home admissions for people with the condition,” says Burns.
Yet despite dementia now being the leading cause of death among the oldest people, there are still only 200 Admiral nurses in the UK (compared to the UK’s 4,000 Macmillan cancer nurses).
Figures from Dementia UK show that 72 work for the NHS in the community, 13 in acute NHS hospitals, six in hospices, 24 in care homes, 57 in the voluntary or social care sector and 22 on the dementia helpline. Another six Admiral nurses have been recruited and are awaiting referrals. And while some counties have several nurses, 73 have none (including Lancashire, Leicestershire and Somerset, which all have high numbers of people diagnosed with dementia).
Professor Michael Marmot last week cited the increase in dementia coupled with “miserly” levels of spending on health and social care in recent years as a likely reason for the stalling of improvements in life expectancy. Marmot, the director of the Institute of Health Equity at University College London, said: “If we don’t spend appropriately on social care, if we don’t spend appropriately on healthcare, the quality of life will get worse for older people and maybe the length of life, too.”
According to Dementia UK, the problem is that some cash-strapped CCGs are reluctant to spend £40-50,000 per Admiral nurse, regardless of any financial benefits. “The CCGs’ response is that we have an ever-shrinking pot of money allocated and the local community’s needs have to be prioritised,” says Hayo.
Back in Rottingdean, the Hendersons are convinced that McBryer has kept their mum out of residential care for much longer than would otherwise have been possible.
“Helen is our lifeline,” says Jon. “We feel we can ring her and she will be there for us – we have never had that before.”
“When we didn’t have the strength or know how to get issues resolved Helen would always find a way,” adds Kate. Kate adds: “We are able to confide in her about absolutely anything and would be completely lost without her.”