The practice of placing people with neurological conditions into care homes needs to end, a major charity has said.
A new report, conducted by Sue Ryder, a palliative, neurological and bereavement support charity, reveals that around 15,000 people with conditions such as Parkinson’s disease, multiple sclerosis and Huntington’s disease were placed into nursing or care homes across England last summer.
The charity warned that these settings lack the specialist expertise needed to support people with complex neurological conditions and, for young people, are sociably inappropriate and can lead to isolation.
The Time to Get it Right report goes on to reveal that there are over 500 people in ‘out of area’ placements, forcing many people to live away from their homes, families and friends.
“It’s bad enough that people living with a devastating condition have to deal with something that affects every part of their lives, but the fact that the support they need and deserve isn’t being delivered is appalling,” said Sue Ryder director of Neurological Services, Pamela Mackenzie.
“Our research also shows that most local authorities are not routinely recording whether someone they are providing services for has a neurological condition, meaning that people in England with a neurological condition are invisible to health and care systems,” she added.
“The lack of visibility, together with the lack of priority given to neurology in the health system, means that people with neurological conditions are regularly being let down.”
An earlier Freedom of Information request commissioned by Sue Ryder found that only 25% of clinical commissioning groups (CCGs) were able to provide any data on the number of individuals with a neurological condition in their area and, of these, under half could provide the full data requested.
The research also found that people with neurological conditions were receiving different levels of services depending on where they live.
For instance, specialist nurses were only commissioned in 78% of CCGs, forcing many patients to travel to receive their care or diagnosis, and only 68% offer any specialist physiotherapy.
“Sue Ryder provides expert neurological care to people across the UK. We want to use what we are learning from the survey to improve the experience of neurology patients,” Mackenzie continued.
“Research like this highlights the urgent need for greater investment in neurological services from the NHS, department of health and CCGs.”
Sue Ryder has called for a national plan for neurological services to provide direction and coordination.
It stated in its report that the Public Accounts Committee investigated services for people with neurological conditions in 2016 and promised to look at these services again, but has yet to do so.
The charity also noted that clear commissioning guidance from National Health Services England is needed for CCGs so that they are able to commission effectively for people with neurological conditions.
Image: Pip, a resident at Sue Ryder The Chantry Neurological Care Centre in an art session.