Ten-year wait is over for premature deaths inquiry

The government has defended a 10-year delay in setting up an inquiry into “premature and avoidable” deaths of people with learning difficulties.

The confidential inquiry by the Norah Fry Research Centre, announced this week by the Department of Health (DH), will look at the causes of such deaths and what should be done to prevent them, and will examine both social care and healthcare settings.

The announcement comes 10 years after the government first noted concerns about evidence of avoidable illness and premature deaths of people with learning difficulties, in its Valuing People white paper, which pledged to examine the “feasibility” of an inquiry.

Five years later, health minister Stephen Ladyman announced a “scoping study” to consider the feasibility of an inquiry. The following year, in 2006, the DH decided not to set up a full inquiry, concentrating instead on delivering improvements recommended in a Disability Rights Commission report.

In 2007, Mencap published its own report, Death by Indifference, which described how six people with learning difficulties had died unnecessarily in NHS care, and repeated the call for a confidential inquiry.

In response, the government set up an inquiry into access to healthcare for people with learning difficulties, led by Sir Jonathan Michael, which reported in July 2008. Among its recommendations was yet another call for a confidential inquiry into premature deaths.

In January, 2009, health secretary Alan Johnson pledged to set up such an inquiry “as soon as possible”, as part of the government’s Valuing People Now learning difficulties strategy.

This inquiry, and a review of existing information on the health and care needs of people with learning difficulties – another recommendation of the Michael inquiry – were both finally announced this week.

A Department of Health spokeswoman said: “The previous commitment [in 2000] was to a feasibility study, not actually setting up an Inquiry.  Valuing People is a large and ambitious programme to improve the lives of people with learning disabilities.

“In 2000 the priority was to improve front-line services as quickly as possible. Direct payments, individual budgets and better awareness across our whole society have since transformed life chances for people with learning disabilities.

“Change on this scale takes a lot of time and resources. The confidential inquiry is testament to our commitment not to stop until people with learning disabilities get the support they need.”

She added: “Since [January 2009] the [DH] has been working closely with key stakeholders to develop our approach and make sure we found the best possible expertise to take the work forward.

“The results of this work could have a profound impact on care for people with learning disabilities for years to come. Getting it right is absolutely critical.”

David Congdon, Mencap’s head of campaigns and policy, said: “I think it has taken a long time because it was not a high enough priority.

“It was only when we produced Death by Indifference that that galvanized them into action. We are hoping that we will make some progress now.”

Mark Goldring, chief executive of Mencap, said many further cases had been exposed since the publication of Death by Indifference, and added: “We are currently supporting families who have lost loved ones as recently as last year. These welcomed initiatives are an important part of taking action to avoid further cases.”

24 March 2010