More must be done to prevent avoidable deaths among people with learning disabilities, the parliamentary health watchdog has warned.
The Parliamentary and Health Service Ombudsman said that “too many” people with learning disabilities are not getting access to the right care and treatment in an appropriate time − which in some cases leads to preventable deaths.
“Our casework over the past five years shows that more needs to be done − just one avoidable death is one too many”
The ombudsman said that one of the biggest barriers to achieving optimal care for people with learning disabilities was a “lack of understanding” of their needs.
Having investigating a number of incidents, the ombudsman said it found “alarming gaps” in care including late diagnoses and a lack of proper checks at initial assessment − in one case a patient was deemed “too difficult to assess” meaning their symptoms went unnoticed.
The ombudsman cited research showing that, on average, men with a learning disability died 13 years earlier than men in the general population, and women 20 years earlier than the general population.
“It is really tragic that the lives of people with a learning disability are in some cases being cut short because they aren’t getting the right care and treatment at the right time,” said the ombudsman Dame Julie Mellor.
“We know from our casework the terrible effects when things go wrong, where the needs of vulnerable people and their families are ignored or not thought about,” she said.
“That’s why we are launching the Complain for Change campaign to tell people how they can complain, so people with a learning disability and their families can make problems known and get them put right. We want those working in health and care to make sure the needs of patients are being met,” she added.
The campaign has provided leaflets in Mencap centres across London since March, and from today the ombudsman will be advertising in hundreds of GP surgeries across London and promoting the campaign nationally with patient advocacy groups, Healthwatch and the local NHS.
Dame Julie said: “Whilst important steps have been taken to improve care and meet the needs of vulnerable people, our casework over the past five years shows that more needs to be done − just one avoidable death is one too many.”
Supporting the campaign, care minister Norman Lamb said: “This campaign is a positive step in helping to address inequalities in care.
“We continue to work with people with learning disabilities, their family and carers, charities, and NHS England to respond to people’s needs and provide better care.”