Sue Ryder Comments On The Care Bill

As the Care Bill goes through its second reading in Parliament (16 December 2013), Sue Ryder’s Head of Policy and Campaigns, Preth Rao, explains why government must ensure local authorities should be doing more to understand the needs of their local population.

Around one in six people in the UK will develop a neurological condition in their lifetime¹ yet there is little being done to support them, and their families. Care is often poorly coordinated and fragmented resulting in increasing numbers of avoidable hospital admissions, which is not only extremely distressing for the individual but costly to the state.

An aging population means the number of people who will develop complex conditions that require help with daily living is going to increase.  Out of concern for the future of care services for people living with neurological conditions we issued a FOI (Freedom of Information) request to Local Authorities in England asking them how they commissioned neurological care.  The FOI revealed:

• Only 5% of responding Local Authorities know how many individuals living with any neurological condition they care for.
• Despite necessitating different care requirements, only 6% categorise all specific neurological conditions (conditions include motor neurone disease, Parkinson’s, multiple sclerosis and cerebral palsy).
• Only 10% have an agreed local commissioning strategy for people with neurological conditions.

People living with neurological conditions – from motor neurone disease to Parkinson’s – need specialist care that takes the complexity of their condition into account. Our FOI research revealed a data and strategy ‘black hole’ at just the level entrusted to ensure that people living with neurological conditions are properly identified.

This information vacuum means errors are being made that could condemn a 36 year old with cerebral palsy to life in an old people’s home with no specialist care for her condition. There is 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.

Without condition specific data local authorities will not be able to make an accurate assessment of the needs of their local population and future demand; develop an appropriately skilled workforce; and, promote a diverse and quality provision of services for particular condition groups.

The Care Bill provides an opportunity to create a national and local dataset on how many people with specific conditions or disabilities are in receipt of social care services.  The reforms set out new duties and procedures by which local authorities must assess people’s needs for care and support. We’re calling on the government to ensure these new duties require local authorities when conducting social care assessments and arranging care packages to collect and record information about an individual’s main and other disabling conditions.

As a provider of neurological care, we know firsthand the difference care tailored to an individual’s specific condition, needs and preferences can make.  We must ensure that more people have access to the care they need, and deserve.















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