Death By Indifference

This report will set out why we (MENCAP) believe there is institutional discrimination within the NHS, and why people with a learning disability get worse healthcare than non-disabled people. We present the stories of six people who we believe have died unnecessarily. We do so because healthcare professionals need to realise the serious — even fatal — consequences of their lack of understanding. We do so to point out that these professionals must work to ensure that such tragedies can never happen again.

This report follows on from Mencap’s Treat me right! report and campaign in 2004, which exposed the unequal healthcare that people with a learning disability often receive from healthcare professionals. The report made clear
that much work needs to be done within the NHS to ensure that people with a learning disability are treated decently and equally.

Since the launch of our Treat me right! campaign, many cases of appalling treatment of people with a learning disability in hospitals around the country have come to light. The six cases presented in this report share common factors. In our view, they raise serious concerns about the way people with a learning disability are treated within our healthcare system.

The Disability Rights Commission (DRC) recently published the results of a
formal investigation into physical health inequalities experienced by people with learning disabilities and mental health problems1. The investigation showed that people with a learning disability receive fewer screening tests and fewer health investigations. It showed that people with a learning disability are less likely to get the healthcare they need. Commenting on the report, the Chairman of the DRC stated that the view of the inquiry panel was that ‘early deaths in these groups are not acceptable’ and that they had encountered ‘complacency and a lazy fatalism that these groups just do die younger’2. But the fact is, that shocking and tragic as these reports are, there has been an astonishing lack of response to them at Government level. Health inequalities have been widely documented and the solutions clearly identified – including the need for a confidential inquiry into premature deaths, annual health checks prevent the disgracefully poor treatment that continues to be reported to Mencap. No action has been taken to stop other deaths like the six you will read about in this report. That is why this report is called Death by indifference. This is a wake up call for the NHS. It is simply not doing enough to ensure a reasonable standard of treatment for people with a learning disability. Calling for discriminatory practices to be eliminated, the DRC1 report states that ‘in the absence of systemic national action to close the gaps of inequality, service users remain caught in a policy Catch 22 situation’. Warning that the Government could face legal challenge under new disability equality laws,3 the DRC states that ‘a clear lead needs to come from the Department of Health and the Welsh Assembly Government in taking action and ensuring that others take action’.
It is clear that change needs to happen – without further loss of time.