Council data ‘black hole’ risks inappropriate care for disabled people

Sue Ryder finds 5% know how many people with neurological conditions they support, and warns data gap means clients could be missing out on the specialist support they need.

Service user Romana Ali, for whom specialist support was key

People with neurological conditions are at risk of inappropriate care because most councils lack information on them, care provider Sue Ryder has warned.


Case study: Romana Ali

The report cites the case of Romana Ali, who spent time in hospital and a nursing home after suffering a brain haemorrhage in 2004, and professionals felt her condition would not improve.

She was then referred to one of Sue Ryder neurological care centres, unable to speak or do any daily activities unaided.

Through rehabilitative support she has made a significant recovery.

“When I first came here I couldn’t get out of my chair,” she said. “Now I can walk. I wasn’t able to use the toilet or shower. Now I can do both with no help. I have gone through a big big change.”


Just 10% of English councils have an agreed neurological conditions commissioning strategy, 5% know how many individuals with these conditions they support and 6% categorise service users by specific conditions, such as Parkinson’s disease, motor neurone disease or multiple sclerosis.

The figures, taken from 131 of the 152 English councils, were obtained by Sue Ryder through a Freedom of Information request.

The information “black hole” meant councils may be commissioining inappropriate care for the group, warned Sue Ryder’s director of health and social care, Steve Jenkin. He cited the case of a 36-year-old Sue Ryder service user with cerebral palsy who had been previously placed in a care home for older people on the death of her mother and carer.

“There’s a real, human cost to this information gap, not to mention the financial cost of people re-entering the NHS system in lieu of appropriate care,” he warned.

He urged councils to ensure that their care management systems enabled staff to record neurological conditions when carrying out assessments, warning many currently did not.

He added that the information and strategy gap meant councils often did not know what services were available to meet neurological needs, and were failing to stimulate the market to fill gaps in provision, particularly in relation to specialist care.

“If councils don’t know how many people there are in their communities there’s not going to be the stimulus of the market to meet their needs,” Jenkin warned.

Sue Ryder called for councils to collect detailed condition-specific data about people with neurological conditions for whom they provide support, and to also provide accessible information for people with neurologicla conditions and their families.

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