In the report Time to get it right, it is estimated that during the summer of 2018 alone, 15,000* people with neurological conditions were in care homes for the elderly.
Sue Ryder, which provides expert neurological care and rehabilitation, submitted a Freedom of Information request to all local authorities in England asking: ‘How many residents with a neurological condition in your local authority area are currently in an older people’s nursing or care home?’
The responses to the FOI illustrate how people with acquired brain injuries and progressive neurological conditions such as motor neurone disease, Parkinson’s disease, multiple sclerosis and Huntington’s disease are frequently being left in inappropriate facilities, without the medical care they need.
Further research shows that only 49 out of 151 local authorities were able to confirm that they routinely record whether the individuals they are providing services for have neurological conditions.
Heidi Travis, Chief Executive, Sue Ryder, says:
“It is difficult enough for people living with a neurological condition to deal with the impact it has on them and their loved ones, every day.
“The fact that the support they need and deserve is simply not being provided to them, is completely unacceptable. Appropriate, specialist care and support should not be too much to expect.
“Not only do care homes for older people lack the specialist expertise needed to care for people with neurological conditions, but for younger people they are completely inappropriate and socially isolating.
“When only 49 out of 151 local authorities are able to confirm that they record whether the individuals they are providing services for have neurological conditions, it shows us that these people are largely invisible to the health and care systems.
“The distinct lack of priority given to people with neurological conditions means that we are left with tens of thousands of people with specialist needs, not having them met.
“This means that chances of rehabilitation for those with acquired brain injuries are being abandoned and the wellbeing of those with progressive conditions is being significantly impaired. The impact of this is also felt by the families and loved ones of these people.”
Recommendations from Sue Ryder’s Time to get it right report include:
• A commitment from the NHS and Government to end the practice of people with neurological conditions being placed in care homes for the elderly.
• A commitment from the NHS and Government to end the practice of people with neurological conditions being placed out of area, away from their families and support networks.
• A national action plan to be put in place for neurological service provision across England in order to provide direction and co-ordination to the health and care systems.
• The Public Accounts Committee to revisit their 2016 investigation into services for people with neurological conditions.
• Clear commissioning guidance from NHS England to enable CCGs to consistently deliver services for people with neurological conditions.
Danny Gallagher was 57 when he fell at work and sustained a life changing brain injury.
Following the accident Danny could barely move or speak. After leaving hospital, Danny was placed in a care home for the elderly, before being moved to one of Sue Ryder’s specialist neurological care centres. His daughters, Daniella and Gemma, explain the impact that the right care has had for Danny.
“We wanted to get the right type of care for Dad, to find something in the right setting, somewhere he was comfortable.
“From the hospital, Dad was moved to a nursing home, but they didn’t have the right facilities that Dad needed and so he wasn’t making any progress. They could only do the bare minimum and weren’t rehabilitation-focussed.
“The first time we came to Sue Ryder Cuerden Hall, it immediately felt like home. The general aura of the place is comfortable and comforting compared to the nursing home.
“Every time we see Dad now he is able to do something new, speak more clearly, able to move in a way he wasn’t before. Generally it is great for us to know that the staff are all rooting for him. The whole environment is so positive. By involving him in discussions and actually listening to him, they are allowing Dad some autonomy over his circumstances, which is key when you’ve had so much of that removed as he has.”