The government published its response to the Confidential Inquiry into premature deaths of people with learning disabilities (CIPOLD) last week – but the recommendations in the response do not go far enough to ensure that people with learning disabilities receive equal treatment in healthcare settings.
First, a quick recap. The CIPOLD report, published in March, contained the key headline that people with learning disabilities die, on average, 16 years earlier than the general population and more than a third of these deaths are as a result of people not getting the right healthcare. This equates to 1,200 deaths per year, according to Mencap.
Those figures are as shocking now as they were then and need to be kept in everyone’s mind, as next-stage developments unfold.
The government has considered the recommendations of the CIPOLD report, and has decided to take on a number of them, such as:
• Improving the way people with learning disabilities are identified so that services can better respond to their needs
• Aiming to have a known contact for people with multiple long-term conditions to coordinate their care, communicate with different professionals and be involved in care planning with the individual
• Looking at the introduction of patient-held records for all people with learning disabilities who have several health conditions.
All these are positive developments – although they simply reinforce existing best practice – and will help people with learning disabilities to receive better healthcare. But they will not eliminate inequalities or premature deaths.
One crucial recommendation from the CIPOLD report that hasn’t been taken up was that a national body should be established to monitor and investigate the deaths of people with a learning disability. The reason for this negative response, according to the Guardian, is that the government needed to weigh up the costs and benefits of the agency.
This decision has been met with criticism from several quarters. Mencap’s campaigns manager, Dan Scorer, said it was a “lost opportunity to learn from mistakes and stop this tragic waste of life.”
Pauline Heslop of Bristol University, the principle investigator for the CIPOLD, has also criticised the government’s response. "We cannot allow the situation to continue in which people with learning disabilities are dying from causes of death amenable to good quality healthcare,” she was quoted as saying in the Guardian. “That needs tackling with some urgency, and urgency of action appears to be lacking in the Department of Health response.
"In particular, we are disappointed that the Department of Health has not agreed to a national mortality review body to review future deaths of people with learning disabilities."
Strong criticism from respected quarters. And, given the number of deaths per year, you wonder why this isn’t more of a high-profile issue. In particular if it’s true that the body has not been set up due to the cost, it makes you question how much of a priority people with learning disabilities are to the government. A national body to monitor and investigate deaths seems a reasonable measure – it could help to highlight poor practice and discrimination, for instance.
Care Service Minister Norman Lamb himself said: “…high quality care should be expected for everyone. We wouldn’t accept this kind of poor care for cancer patients.” This is true – if deaths due to poor care in cancer services were this high, there would have been a major national outcry – as there undoubtedly should be in response to CIPOLD’s findings, and the Government’s limited response.