2007 - Getting it right and Death by Indifference
People with a learning disability have poorer health than people without a learning disability, as they are more likely to have additional health problems. This includes higher rates of problems with weight, mental health and respiration.
On top of this, people with a learning disability tend to have poorer health outcomes due to them not receiving equal healthcare.
This means that people with a learning disability often die younger and sometimes die in situations where their death could have been prevented if they had received better quality healthcare.
The loss of six lives highlighted institutional discrimination
In 2007, following the deaths of six people with a learning disability in NHS care, Mencap published Death by indifference, which exposed the unequal healthcare and institutional discrimination that people with a learning disability often experience within the NHS.
The families of Emma, Ted, Tom, Martin, Warren and Mark told us how they felt that hospital blunders, poorly trained staff and indifference had led to their loved ones deaths. We called for serious action from the government.
We urged health organisations to sign our charter
Three years later in 2010 we launched the Getting it right charter, which provided trusts and health organisations with guidance on how they could improve the care received by people with a learning disability.
However, by 2012, we had 74 deaths reported to us leading to the publication of Death by indifference: 74 deaths and counting which showed people with a learning disability were still not receiving equal healthcare in all NHS settings and were continuing to die as a result.
An investigation into the six lives lost
Death by indifference triggered an independent inquiry called “Healthcare for All” and resulted in the Parliamentary and Health Service Ombudsman conducting an investigation into the six cases. It also played an important role in influencing the Department of Health to commission the Confidential Inquiry into premature deaths of people with a learning disability.
1,200 lives lost every year
On 19 March 2013, the Confidential Inquiry published the findings [link to our briefings and the CI website] of its two-year investigation, which had looked at the deaths of 247 people with a learning disability. The Inquiry found 37% of the deaths to be avoidable. Scaled up, this shows that 1,200 people with a learning disability are dying every year due to poor healthcare. Whilst shocking, the findings confirmed our fears: people with a learning disability were dying due to unequal treatment.
We strongly support the recommendations of the Confidential Inquiry and hope they will help healthcare professionals and others better understand the problems people with a learning disability encounter in healthcare settings and the steps that can be taken to improve the quality of care people receive. This should result in long-term improvements in the healthcare of people with a learning disability.
100 families have told their story
Throughout our campaigning, we have continued to hear from families and carers who have lost loved ones due to poor healthcare. Since 2007, we have supported nearly 100 families to tell their stories, as well as helping many navigate the complicated complaints process, in their quest to get some form of justice.
Hospitals commit to improving healthcare for people with a learning disability
Over 200 trusts, hospitals and organisations signed up to the Getting it right charter, committing to improve healthcare for people with a learning disability. Along with a series of “Hospital Roadshows,” multiple conference appearances and the “Getting it right from the start” project, “Getting it right” has seen us work with healthcare professional and specialist networks across the country, working to raise awareness, educate and offer training about learning disability and how best to treat people. This has included developing various resources for professionals and information aimed at people with a learning disability and their families and carers to make sure they are getting the right support.
- Confidential inquiry - our debrief
- Confidential inquiry - our easy read debrief
- Ombudsman's Six Lives report
- Death by indifference report
- Death by indifference report (easyread)
- Death by indifference: 74 deaths and counting report
- Getting it right charter
- The Getting it right charter explained
- Who's signed up to the Getting it right charter?
- Sign up to the Getting it right charter
- Getting It Right - From The Start project
- GP Toolkit
- Resources for professionals and families
If you'd like more information about this work, please email us at firstname.lastname@example.org