Our new Time to get it right report, published today, gives a comprehensive picture on how people with neurological conditions such as motor neurone disease, Parkinson’s disease, multiple sclerosis, Huntington’s disease and acquired brain injury are being let down by health and social services in England.
Our new research reveals that approximately 15,000 people with neurological conditions have been placed in older people’s nursing or care homes across England during summer 2018. These settings lack the specialist expertise needed to support people with complex neurological conditions and, for young people, are sociably inappropriate and can lead them to feel isolated.
The research 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.
People with neurological conditions are "invisible" to health and care systems
“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's 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.”
Patchy data reveals a postcode lottery
An earlier Freedom of Information request (FOI) 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.
Our 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," Pamela continued. "Research like this highlights the urgent need for greater investment in neurological services from the NHS, department of health and CCGs.
"England needs a national plan for neurological services so we can improve things for people with these conditions," she asserted.
The report's findings
More specifically, Sue Ryder’s recommendations in the report cover the following key areas:
- England needs a national plan for neurological services to provide direction and coordination.
- The practices of people with neurological conditions being placed in generic nursing homes, and long-term out of area settings need to end.
- The Public Accounts Committee investigated services for people with neurological conditions in 2016 and promised to look at these services again – this needs to happen.
- There is also a lack of prioritisation at a regional level, with Sustainability and Transformation Plans – key vehicles for change in the NHS in recent years – largely neglecting neurology.
- 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.
Download the report
Meet Danny, a resident at Sue Ryder Cuerden Hall Neurological Care Centre
"Dad was only 57 when he fell at work and suffered a catastrophic brain injury. He spent 15 months in hospital before being moved to a nursing home, but neither had the right rehabilitation facilities. As soon as we set foot inside Cuerden Hall, it felt like home. Every time we see Dad now, he is able to speak more clearly or can move in a way he couldn't before."
About the report
- In August 2018, Sue Ryder commissioned a Freedom of Information request to all Local Authorities in England asking about their services for people with neurological conditions.
- The new report, Time to get it right: A report on the provision of health and social care services for people with neurological conditions in England, sets these findings in the context of other recent research and an earlier FOI conducted by Sue Ryder which targeted CCGs.
- The report makes recommendations to policy makers on how to improve care and support for people with neurological conditions.