Neurological patients put in care homes for the elderly
Many people with conditions such as multiple sclerosis and motor neurone disease are living in care homes for the elderly, a charity has found.
Sue Ryder Care said people with neurological conditions were being let down and needed specialist care.
The charity surveyed Scotland’s local councils and found 86% of people with neurological conditions in residential care were in homes for the elderly.
It said one in five of these people were under the age of 65.
The Scottish government said it had started the development of “Scotland’s first national action plan on neurological conditions to help drive improvements”.
Sue Ryder Care said that without specialist services designed to limit the impact of conditions such as Parkinson’s disease, multiple sclerosis, motor neurone disease, Huntington’s disease and sudden brain injury people would suffer needlessly and be unable to live their lives as fully as possible.
It sent freedom of information requests to all 32 Scottish local authorities but only 11 were able to answer the question partially or fully.
Of those that provided data, there were 380 people with a neurological condition in a care home for older people, with 74 (19%) under the age of 65.
There were 62 people with a neurological condition in a care home for people with physical and sensory impairment, of which 55 (89%) were under the age of 65.
The charity said that if the data was extrapolated for the Scotland population as a whole, it would mean an estimated 1,036 people with a neurological condition in a care home for older people, with 202 of these being aged under 65.
Pamela Mackenzie, director of neurological services and Scotland for Sue Ryder, said: “It is shocking that people who have these complex conditions are being cared for in general nursing homes.
“It is not the fault of the nursing home, however, they are just not geared up to the complexities of these conditions.
“It does mean that they are not getting the level of care and support that they deserve and need to manage their life and their conditions on a daily basis.”
Ms Mackenzie added: “We would like the Scottish government to take the lead in developing a strategy for neurological care so there is a consistent approach across Scotland.
“The Scottish government have acknowledged that this is an issue. They are looking at the data on neurological conditions because currently that is not known.
“In order to plan services, you need to understand how many people have a neurological condition.”
‘Best possible support’
The Scottish government’s Minister for Public Health, Aileen Campbell, said: “Health and social care integration has placed a greater emphasis on effective care in community, where each integration authority must develop plans to meet the needs of everyone, including people with neurological conditions, in their area.
“We want to ensure that people living with neurological conditions have consistent access to the best possible care and support, which is why we have started the development of Scotland’s first national action plan on neurological conditions to help drive improvements.
“Whilst this work is at an early stage, the new plan will support the development of new neurological condition care standards which could be adopted across health and integrated community services.
“As the First Minister announced in the Programme for Government, we will be extending free personal care to all those under 65 assessed as needing it, which will support many people with neurological conditions receiving care in their own home.”
‘Here is your wife back , she’s broken’
Thomas McGreevy’s wife Dee has a neurological condition after an operation to remove a tumour and has been in an older people’s care home for more than two years.
Dee is still only 56.
Thomas, from Uddingston in South Lanarkshire, says her life is now “mere existence”.
He says that she has received no specialist care since just after her operation.
“I would say the NHS saved her life by removing two tumours and then they felt their work was done,” he says.
“It is almost a case of ‘here is your wife back, she’s broken, do what you will’.
“There was no guidance, there was no follow-up, no co-ordination.”
Thomas says the nursing home keeps her clean and provides her meals but does not offer any other treatment such as speech therapy or physiotherapy.
He says: “For the past two-and-a-half years I have been fighting tooth and nail to have her assessed to see if there could be some sort of professional input.”