The speed of the government’s progress in acting on the recommendations of the Confidential Inquiry into premature deaths of people with learning disabilities (CIPOLD) has been criticised in a House of Lords debate.
The debate was brought about by Baroness Hollins to ask what action the government is taking to address the health inequalities found by the CIPOLD, which was published in March 2013. She noted that the government was supposed to have published a ‘one year on’ report in March to this, which still hasn’t been seen.
CIPOLD found that people with learning disabilities die 16 years sooner on average than the general population and more than a third of these deaths are down to people not getting the right healthcare. This equates to more than 1,200 children and adults with a learning disability dying prematurely every year, according to learning disability charity Mencap.
Some of the most common reasons for the disparity in mortality are delays or problems with investigating, diagnosing and treating illnesses in people with learning disabilities.
Frustration
While Baroness Hollins welcomed the government’s commitment to establish a national mortality review board by March 2015, made in May, she expressed her frustration at the time this has taken. “By that time, an estimated 2,500 more people could have died needlessly since CIPOLD reported, but realistically no improvement can be expected in services until at least 2018. That would bring the number of avoidable deaths to 7,500 before any targeted action was likely.
“Taking action on the recommendations of the confidential inquiry, particularly to ensure that the mortality review is prioritised, is not simply a matter of fairness and equality. If we can get healthcare right for people with learning disabilities, we can probably get it right for everyone,” said Baroness Hollins. “People with learning disabilities and their families have waited a long time—too long—for change. This afternoon [June 12], Mencap delivered a petition signed by 2,700 people to the Department of Health asking for urgent action.”
Conservative peer Lord Ribeiro, a retired consultant colorectal surgeon, added that the training and education of doctors is key to ensuring that people with learning disabilities have parity of esteem.
Progress made
In response, Earl Howe said that the government has made progress since the CIPOLD report was published, pointing to Living Well for Longer: National Support for Local Action to Reduce Premature Avoidable Mortality, which recognised the need for a targeted approach for people with learning disability. “This national partnership, and the focus and momentum it has engendered, creates a vital opportunity to make a difference in our collective fight to reduce avoidable mortality,” he said.
Earl Howe added that NHS England is committed to establishing a learning disability mortality review function by March 2015, as set out in its business plan, Putting Patients First.
Other developments that are being made include NHS England, the Health and Social Care Information Centre and Public Health England working to provide standardised mortality data for people with learning disabilities to underpin the NHS outcomes framework and the mortality review function. Also, the NHS standard contract for 2014-15 now includes a requirement for providers to undertake an annual audit of reasonable adjustments.
“We now need to step up the pace and make a concerted national effort to see more equitable access and outcomes for people with learning disabilities,” Earl Howe said. “A report setting out progress to date will be presented to the Learning Disability Programme Board in July, a year on from the Government’s response to the confidential inquiry. That will be published online.
“I hope I have demonstrated that there has been extensive action, but of course there is more to do. I believe that collaboration nationally and locally on this challenging issue will give us the best chance of delivering equitable health outcomes across our nation.”
