NHS Double Standard For People With Dementia In Care Homes

The NHS is providing a second-class service to many of the 280,000 people with dementia who live in care homes in England. An Alzheimer’s Society investigation has uncovered that almost half* of care home managers feel the NHS isn’t providing residents with dementia adequate and timely access to vital services like physiotherapy, continence and mental health services. This has led to instances where people have been left bed-bound, incontinent and sedated because the health service is too slow in responding to their needs.

The investigation, which is part of the Fix Dementia Care campaign, involved a survey of over 285 care home managers in England conducted jointly by Alzheimer’s Society and Care England, as well as first-hand testimonies of carers of people with dementia living in care homes.

It also revealed that one in five care homes surveyed are being wrongly charged by GP practices for services that should be free on the NHS – up to as much as £36,000 a year. The total cost of GP charges to care homes is estimated to exceed £26 million a year.

Alzheimer’s Society is concerned that in their hour of need people with dementia, who like any other tax payer have funded the NHS, are paying again to see a GP through their care home fees, or being denied timely access to services. 

The money that care homes are spending on GP services – that are free on the NHS to all those living in the community – could be much better spent on one-to-one care for people with dementia. The average GP charge of £12,191 a year is enough to fund care for a person with dementia for nearly six months**.

Poor access to NHS services is penalising some of the most vulnerable people in society. Care home managers told us:

On access to mental health services: “A resident who was saying she felt suicidal had to wait over eight weeks to be referred to mental health services.”

On access to physiotherapy: “We had one [person] who fell and had a hip fracture. Physio follow-up in the community took over a year.”

On access to continence services: “Residents have to go without continence aids, leaving them isolated, with no dignity and low self-esteem.”

The investigation found shocking examples of the effect of long waiting times and lack of local services. This included people with dementia in care homes:

being prescribed pain relief over the phone for a broken collar bone

being prescribed the wrong drugs as a result of a GP’s insistence on conducting consultations over the phone

waiting three months for continence products

being restrained under an emergency Deprivation of Liberty Safeguard due to a lack of mental health care

waiting a year for physiotherapy following surgery

being refused an out-of-hours appointment in their care home by a GP

These practices contravene the NHS Constitution, which states that everyone, regardless of who they are or where they live, should have access to the NHS services they need free at the point of use.

Jeremy Hughes, Chief Executive of Alzheimer’s Society said: “People with dementia living in care homes are just as entitled to receive free care from the NHS as anyone else. A care home is, after all, a person’s home and health services must treat care homes as a vital part of the community, instead of holding them in disregard.

“It’s unacceptable that this NHS double standard is leaving people with dementia waiting months for physiotherapy, incontinence and mental health services. In that time we are concerned they’re being robbed of essential care and pain relief, as well as their dignity, self-esteem and independence.

“With 70 per cent of care home residents living with dementia, we’re urging everyone to get behind our campaign to transform the second-class service that many receive.”

Alzheimer’s Society’s Fix Dementia Care campaign is calling for:

an end to GP practices charging for providing access to a standard primary care service that should be free on the NHS

the Government to enforce the NHS Constitution so people with dementia living in care homes have equal access to NHS services

the Government to support improvements in the availability of district and community nursing in care homes so people with dementia receive better care, closer to home and reduce pressure on primary and secondary care

Martin Green, Chief Executive of Care England, said: “Our research and report with Alzheimer’s Society identifies that many people living with dementia in care homes, and the care staff who are responsible for their care, are being all but abandoned by primary care.

“Sadly, this charging has been going on for far too long: we have called for years for this practice to be put to a stop, and for care homes and residents with dementia to be more visible and equal in the eyes of the health service.

“As the Health Select Committee has recently recommended, access to primary care must be improved. Older people living with dementia in care homes have the same rights to primary care, health and support as any other citizen, and the government and NHS must act to ensure that these services are available to everyone when they are needed.”

Case study

Jean, 85, from Clacton-on-Sea, has vascular dementia and receives good quality care in her care home, but when she had an allergic reaction to antibiotics, she was left for 17 hours without a GP visit. Although it was not assessed to be an emergency, despite numerous calls to the out of hour’s service, a GP refused to come out. She was left with a rash all over her body, hallucinating and with a temperature.

Jean’s daughter, Tracey, 50, said: “The agony my poor mother went through was terrible. Thankfully she recovered, but in those long hours I was so worried. No one seemed to take into account Mum’s vulnerability and to wait that long after so much chasing – it was unacceptable. I was left so unhappy and tired because I hadn’t left my mother’s side from the moment she became unwell until her recovery. The whole incident left me feeling like no one cared about older people, especially not people with dementia.”

Alzheimer’s Society is calling on people to back the Fix Dementia Care campaign by signing up at www.alzheimers.org.uk/fixcampaign.

Over the course of 2016, Fix Dementia Care will look at the quality of care people with dementia receive in three key care settings: in hospitals, in care homes and in the home.