Learning disabilities

Patient perspectives: Case study stories

Contents

Introduction

On this page you can hear stories of the care patients with learning disabilities received - from patients themselves, and from their parents. These compelling testimonies make clear the need for improvement, while one shows that there some examples of good practice already happening.

Johnson - being sectioned

Johnson's story

Johnson describes his experience of being sectioned and how important being out of hospital is to him.

Download the transcript (PDF)

Oliver's mum

'He had no vocabulary for pain, and quite possibly no concept of it either.'

Sinead Gillespie talks about the care her son Oliver received and shares her thoughts on the review process into the treatment he received.

Oliver's story (pdf)

Death by Indifference

Mencap, 2007

This report drew national attention to the deaths of patients with a learning disability using NHS services. It included six detailed case studies of people with learning disability who had died prematurely due to failures to provide reasonable adjustments to their care, failure to adhere to the Mental Capacity Act and failure to listen to family carers.

Death by indifference triggered the Sir Jonathan Michael’s inquiry ‘Healthcare for all’ and an investigation of the six cases by the Parliamentary and Health Service Ombudsman. This resulted in the government accepting all the recommendations of the inquiry and setting out their response in the strategy for people with a learning disability, Valuing People Now.

Death by indifference, Mencap, 2007

Death by Indifference: 74 Lives and Counting

Mencap 2012

This report, published in 2012 by Mencap, reviewed progress made since the original Death by Indifference report, 5 years earlier. It documented trends in the 74 cases which had been reported to Mencap where concerns had been raised about the quality of care provided to patients with a learning disability.

The report includes several case studies focusing on different issues which contributed to deaths of people with a learning disability, including: Do Not Resuscitate orders, the Mental Capacity Act 2005, recognising pain, diagnosing and treating issues in a timely manner, communication and the provision of basic care.

Death by indifference: 74 lives and counting, Mencap, 2012