People in Scotland with neurological conditions are being denied the treatment and support they need, with younger adults ending up in care homes designed for older people according to a report by charity, Sue Ryder.
The health and social care charity, says that without the right specialist care people with conditions such as Parkinson’s disease, multiple sclerosis, motor neurone disease, Huntington’s disease and sudden brain injury will suffer needlessly.
Thousands face a postcode lottery to get the full neurological care required
Sue Ryder made a Freedom of Information request to every local authority and health board in Scotland. It found that people with neurological conditions 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 a third of local authorities know how many people with neurological conditions have been inappropriately placed in older people’s care homes. If these findings were replicated across Scotland it would equate to nearly a thousand people, a quarter aged under 65. This means they will miss out on the specialist neurological treatment, support and rehabilitation they would receive in a specialist centre.
At just 23, Romana 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.”
“totally inappropriate” care
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.
Emma 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.”
Sue Ryder warns that the number of people with neurological conditions in older people’s care homes could be even higher as its research also exposed that none of the local authorities or health boards actually know how many people in their area are affected.
Sue Ryder’s Assistant Director Scotland, Pamela Mackenzie, 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.
"Now the true state of neurological health and social care services in Scotland has been revealed, we urge the Scottish Government to take immediate action to address these inequalities so people with neurological conditions get the chance of a better quality of life."
Neurological conditions cause complex physical and mental health problems and eventually impact on every aspect of a person’s life, with families and carers hugely affected. The symptoms vary between conditions and between individuals, but can affect people's ability to move their body, communicate and carry out basic tasks like feeding themselves and washing. Some conditions also cause mental health problems that change people's behaviour.
To control and manage their symptoms and cope with the everyday practicalities of life, people with neurological conditions need to access a broad range of specialist health and social care services.
Dire need for reformation in neurological care
Sue Ryder is campaigning for the Scottish Government to improve health and social care for people with neurological conditions by providing them with:
- dedicated neurological care services whether someone lives at home or in residential care, which are delivered by specialists who understand these complex conditions.
- joined up services by giving everyone with a neurological condition support to navigate the complex health and social care system, by, for example, giving them access to an identified specialist nurse who understands their condition.
- rewritten care standards for neurological care so that they place people who use health and social care services at their heart. The Scottish Government must also ensure that the new standards are met.