An Sue Ryder investigation has uncovered shocking numbers of adults with brain disorders missing out on treatment in older people's care homes.
Around 1,000 adults with neurological conditions such as epilespy, multiple sclerosis or Parkisons are being inappropriately cared for in homes designed for older people in Scotland.
An investigation by charity Sue Ryder has found a third of local authorities admit that people with brain conditions in their areas have been inappropriately placed in care homes for the elderly.
This means they will miss out on the specialist neurological treatment, support and rehabilitation they should be receiving.
The health and social care charity made a freedom of information request to every local authority and health board in Scotland. It found that people with neurological conditions, which also include motor neurone disease (MND), brain injuries or Huntington's disease, face a postcode lottery to get the full range of physical and emotional health and social care services they need to live as full a life as possible.
The charity’s investigation found that only nine local authorities know the number of people who have been inappropriately placed in older people’s care homes. Those councils admit that this has been a problem for 245 people, 25% of whom are under 65. Assuming the problem is the same across all council areas, the charity says 960 Scots will be affected.
At just 23, Romana (pictured) was four months pregnant with her second child when she suffered a brain haemorrhage that left her paralysed and unable to talk. Romana, who is now at Sue Ryder’s neurological centre in Aberdeen, spent years on a ward for older people.
She says that the ward didn’t have the specialist facilities she needed to get better and she couldn’t see her children apart from short visits. “It felt very strange because everyone around me was so much older; I was a very young girl at the time, and I felt I had lost my family.”
It felt very strange because everyone around me was so much older; I was a very young girl at the time, and I felt I had lost my family - Romana
Emma (not her real name), is in her mid-forties and has multiple sclerosis. Before receiving care from Sue Ryder she was in a residential home predominantly for older people that she says was “totally inappropriate” for her.
She says that spending time there was bad for her mentally and physically: “I found it increasingly distressing being there. I used to have a special standing aid to help me get dressed but they didn’t use them at that home so I lost the ability to do that. It was really the wrong place for me and I had to fight and fight to get out.”
As two-thirds of Scottish local authorities are currently not counting the number of people placed in older people's care homes inappropriately, Sue Ryder warns that the number of people affected could be much higher.
Pamela Mackenzie, assistant director for Scotland, said: "Neurological conditions can strike anyone, at any time, turning their life and the lives of their loved ones upside down.
"Those affected can endure some of most painful and disabling symptoms of all health problems and this impacts on every aspect of their life, including their relationships, their children and their job. On top of this, they face an uphill struggle to get the specialist care they need whether in their own home or in residential care.
"It is clear from our research that the needs of people with neurological conditions have largely been overlooked in recent years."
The charity has launched a campaign, Rewrite the Future, urging the Scottish Goverment to look into care for people with neurlogical conditions as a matter of urgency. It is calling for dedicated neurloglcial care services for all Scots whether they live at home or in residential care.
Jamie Hepburn, minister for sport, health improvement and mental health, said: “The Scottish Government is working to provide the best possible care for people neurological conditions such as these. Our health service currently provides high quality care across a range of services delivered by NHS boards.
“However, we want to see people receiving care in their own homes or as close to home as possible, as set out in our recently published clinical strategy. That is what we consistently hear patients want and helps with the management and treatment of their condition.
“With this in mind, our 2016/17 budget sets out plans to invest a further £250 million per year through health and social care partnerships, to protect and grow social care services, and invest £11.6m to implement Self-directed Support.
“We also recognise the vital role specialist nurses play in patient care. This is why we committed £2.5m of recurring funding for specialist nursing and care, including up to £700,000 to specifically target MND care. The health boards involved are currently recruiting additional nurses, or increasing the hours of existing nurses in order to fulfil our pledge to double the number of MND nurses in Scotland. Some posts have already been filled and the remaining posts are expected to be filled by spring 2016.”