Healthcare inquiry reveals 'discrimination, abuse and neglect'

Tuesday 29 July 2008

The inquiry ordered in response to Mencap's 'Death by indifference' report has called for change to prevent further unnecessary deaths.

Mencap's ‘Death by indifference' report told the stories of six people with a learning disability who died unnecessarily while in the care of the NHS. It prompted the government to order an independent inquiry into the healthcare of people with a learning disability.

The inquiry's report, published today (29 July), reveals some good practice, but also ‘appalling examples of discrimination, abuse and neglect across the range of health services'. The inquiry found ‘convincing evidence that people with learning disabilities have higher levels of unmet need and receive less effective treatment'.

Sir Jonathan Michael, who chaired the inquiry, said: "It was shocking to discover that the experiences of the families described in Mencap's report (pictured above) are by no means isolated, despite a clear framework of legislation against discrimination."

The inquiry's recommendations include:

• reasonable adjustments for people with a learning disability by health services, including regular health checks and liaison staff across services

• a confidential inquiry into the avoidable deaths of people with a learning disability and a permanent public health observatory to promote good practice

• compulsory learning disability training for healthcare professionals

• the involvement of family carers in care and treatment

• better inspection of how the NHS treats people with a learning disability

• better data collection to identify people with a learning disability.

Jane Kemp, the mother of one of the people featured in ‘Death by indifference', commented: "Emma was a lively, happy, friendly 26 year old, but her learning disability meant doctors weren't prepared to try and save her. The inquiry's recommendations about reasonable adjustments are really important – if they'd been in place when Emma was in hospital she might have been given a chance to live."

Dame Jo Williams, chief executive of Mencap, also welcomed the report. "The report proves that people with a learning disability are being discriminated against in the NHS, which is leading to unnecessary pain and death. It is clear that there is a desperate need for mandatory learning disability training for all healthcare professionals, and for people with a learning disability and their families and carers to be at the centre of all decisions made surrounding their healthcare."

Find out more about Death by indifference

Read Emma's story

Read Daisy's story

Are you a family carer? Share your views on healthcare and talk to other parents in Mencap's family and carers forum.