09:29pm Saturday 14 December 2019

Improving health and lives for people with learning disabilities

The Confidential Inquiry will find out what can be changed to improve the health of people with learning disabilities to enable them to live longer.

The University of Bristol’s Norah Fry Research Centre and the Department of Community-based Medicine, together with colleagues from Bristol Primary Care Trust and the Royal College of General Practitioners, will carry out the three-year Confidential Inquiry.  The Inquiry will aim to determine whether there are any preventable or modifiable factors associated with the deaths of people with learning disabilities, and share any examples of best practice.  Initial findings are expected to be published next spring [2011].  

When someone with learning disabilities (living in the areas covered by the Inquiry) dies, the investigation team will conduct a detailed review of the care and support provided to them.  Trained nurses will also visit the families of the person who has died to discuss the circumstances of the person’s death with them. 

All of the information will be brought together at a Local Review Meeting where professionals will discuss what was done well, and what could have been done better, to take care of the person.  Findings from a number of Local Review Meetings will then be brought to an Overview Meeting to identify any common themes between individual cases.

Dr Pauline Heslop, Senior Research Fellow in the Norah Fry Research Centre, who will lead the inquiry, said: “A Confidential Inquiry into the deaths of people with learning disabilities is long overdue. We hope through this Inquiry we can make a positive difference to the lives of a large number of people with learning disabilities.”

Care Services Minister Phil Hope added: “People with a learning disability have the right to lead their lives like any others, with the same opportunities and responsibilities and to be treated with the same dignity and respect.

“It is unacceptable that people with learning disabilities might be experiencing lower standards of care than other patients.  This must be fully investigated to establish what factors have come into play and if tough action is needed.”


Please contact Joanne Fryer for further information.

Further information:

The Norah Fry Research Centre at the University of Bristol was established in 1988, and is one of the leading centres in the United Kingdom for research into services for people with learning disabilities. 2009 marked a celebration of 21 years of continuous research activity.

Its principal interests are in the area of social and policy-related research. Research studies at the Centre are based on a social model of disability, attempting to support disabled people and their families in identifying and tackling the barriers they face.

The Centre aims to make a positive difference to the lives of disabled children, young people and adults – with a particular emphasis on issues for people with learning disabilities and their families.

The Department of Community Based Medicine at the University of Bristol makes a major contribution to a number of research themes in the University, primarily relating to epidemiology, health services research, ethics and neuroscience.

The population-based research is characterised by a multidisciplinary and multi-method approach to addressing questions influenced by public health and health service priorities, often but not exclusively conducted in primary care. There is therefore an emphasis on issues of high prevalence and/or burden on the community, involving problems and interventions of a complex nature.

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