“One of the UK’s foremost writers on older people’s issues, Pippa Kelly is an award-winning dementia blogger, writer and public speaker”.
“Steve Bailey’s mum Mildred in 1947, aged 17, six years before Steve was born. Steve says he looks at the image every day and often wishes he could step back in time to meet her then”.
Steve Bailey was a local government officer in the north west of England until he took early retirement to look after his 87-year- old mum Mildred who has a mixture of vascular dementia and Alzheimer’s.
“I’ve seen the mother I have known all my life slowly descend on a slipway into a whirlpool of confused thinking, memory loss, terrifying delusion and repetitive grief. Sometimes I feel I am both a witness to and participant in a gradually unfolding nightmare.
“Caring for mum, and also for dad before he died, has affected my life completely,” said 64-year-old Steve. “My former life, as it were, has gone forever. I am supporting mum 24/7 and will do so for the duration”.
Until a few weeks ago Steve and his mum, who live in south Manchester, were helped by Admiral Nurse Deborah Hutchinson. Admiral Nurses, trained and supported by the charity Dementia UK, focus on the family carers of those with the condition.
Like so many carers, Steve underestimated the toll the role was taking on him and it’s only since Hutchinson, 50, left to work as an Admiral Nurse in Lancashire that he has fully realised her importance. “Deborah became for me the still point in the centre of the storm which is dementia caring”.
He says she “made a tremendous difference” because she understood the situation so well, provided information he wouldn’t otherwise know and offered practical guidance relating to female issues.
Steve and his mum have been appointed a new Admiral Nurse who will start supporting them in a few weeks. In the intervening period Steve is receiving advice from a dementia support worker employed by the Greater Manchester Mental Health NHS Trust.
“Not everyone with dementia needs an Admiral Nurse,” says Hilda Hayo, Dementia UK’s chief executive. “But we work at the peak of the triangle of care, and because dementia is progressive we are always helping the family to prepare for the next phase”.
Steve Bailey isn’t alone in his appreciation of Admiral Nurses. Recent evaluations in Sutton, Norfolk and Southampton reveal that these nurses not only improve the lives of those with dementia and their families, but also save the cash-strapped NHS and local authorities money because they reduce the numbers of care home and inappropriate acute hospital admissions, and referrals to GPs and psychological therapies.
Even so, there are still just 215 Admiral Nurses throughout the UK (working for the NHS, hospices, care homes, the voluntary and social care sector and Dementia UK’s dementia helpline) compared to 4,000 Macmillan cancer nurses.
Some cash-strapped clinical commissioning groups (CCGs) are reluctant to spend £40-50,000 per Admiral Nurse, regardless of any potential long-term financial benefits. “The CCGs’ response is we have an ever-shrinking pot of money allocated and the local community’s needs have to be prioritised,” says Hayo.
Ruth Dombey, leader of Sutton council, is puzzled why more areas of the country aren’t employing Admiral Nurses who, she says, “provide a wonderful service to those in need”.
In March 2014, Sutton hired an Admiral Nurse in a partnership between Dementia UK, NHS Sutton CCG and Sutton council, with the nurse’s salary (around £50,000) funded by the CCG and the council. The pilot proved so successful that in 2015 the service was expanded to four Admiral Nurses.
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 Dombey.