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Working together 2: Easy steps to improve support for people with learning disabilities in hospital

Guidance for hospitals, families and paid support staff

The confidential inquiry into premature deaths of people with learning disabilities1 (CIPOLD, 2013) added yet further evidence to show that there are multiple opportunities both to improve healthcare delivery and to prevent problems in the first place. Without realising these opportunities people with learning disabilities will not have the health outcomes to which they are entitled and they will continue to die avoidably and prematurely.

The NHS, like all other institutions, has a duty to implement reasonable adjustments, and the failure to do so was a contributory factor to many of the premature deaths studied.

People with learning disabilities often have a number of complex health needs, but the inquiry found a lack of coordination between different disease pathways and service providers. Paid supporters and families often struggled to be heard, but we know it does not have to be like this. There are some excellent examples of people working together to improve hospital services for people with learning disabilities. Some are in this guide and there are many more. For a summary of some of the issues people with learning disabilities are concerned about see:

This updated guide is an important resource for hospital staff, families and paid support staff working with people with learning disabilities to help them get the care they need, every step of the way from pre-admission planning to discharge. It includes practical suggestions along with links to further resources.

Please use this guide to stimulate the discussions that need to happen within organisations and between them, in order that care is made as safe and effective as possible for this vulnerable group of citizens. Most particularly use it to confirm or challenge the arrangements that are in place to hear the voices of families and paid supporters and include them in care delivery. When the health of somebody with a learning disability deteriorates or they need hospital care, their carers are the experts and need to be consulted and included.