People with dementia are being denied specialised care and treatment because social services are holding the purse strings for people with the condition rather than health commissioners, a government adviser on health has said.
Professor Martin Green, also chief executive of Care England, says if dementia was treated as an illness – as it should be – more people with the condition could access appropriate services.
He said it was wrong that people with conditions like Alzheimer’s disease, and their families, had to pay thousands for treatment from their own pockets, while other diseases had their funding covered by the NHS.
“The system is like this only because we are dealing with older people,” said Prof Green, a Department of Health dementia champion.
“Imagine if it was disease which affected children and young people – things would be very different then.”
Prof Green was speaking at a study day on cognitive impairment and dementia at PJ Care’s Eagle Wood Neurological Care Centre in Peterborough, the UK’s only centre able to treat all neurological conditions on one site.
Under the current system, despite dementia being classified as a physical disease of the brain, most essential care – such as helping with washing, eating and toileting – is provided by social services.
Unlike NHS care, social care is means tested. This means an assessment of a person’s finances is carried out to see if they are eligible for help with the cost of care.
The cost of funding care and treatment for people with various types of dementia was a major topic at the study day, called ‘Open Your Mind to… Cognitive Care: understanding behaviours that challenge’.
Care campaigner Angela Sherman was among five speakers at the event.
She set up her own organisation, Care To Be Different, to offer help and advice to people with problems accessing NHS funding.
Angela stressed that funding through NHS Continuing Healthcare was available to many people with dementia – but thousands who are eligible are not told about it, or are wrongly denied it by the authorities.
She had a marathon three-year battle to secure Continuing Healthcare funding for her own parents.
Angela said: “There are two myths. The first is that if you have savings or assets over £23,250 you will have to pay for your care. That is so misleading, because that relates only to social care.
“The other myth is that NHS Continuing Healthcare does not apply to dementia. It absolutely does – and so many people are told this quite incorrectly.”
Other speakers at the event included Jan Flawn, founder and chair of PJ Care, who set up the company in 2000 after seeing young people with dementia inappropriately placed in care homes for the elderly.
Jill Walton, a nurse adviser on dementia, who focused on the importance of support groups, and clinical psychologist Alistair Gaskell also spoke at the study day.
The event attracted a mix of commissioners, social workers, charities, healthcare workers, nurses, and care home workers and managers.
PJ Care chief executive officer Johann van Zyl said: “It was a very important event for us, having so many people from so many areas of healthcare gathered at Eagle Wood to discuss such vital topics.
“We had five very powerful speakers, and great mix of delegates.
“This is the first in a series of events we are planning – and it was excellent to kick off with some particularly thought-provoking and challenging views and opinions.”
PJ Care owns and manages two care centres in Milton Keynes, Bluebirds and Mallard House, as well as its flagship centre Eagle Wood, which opened in the summer of 2012.