People with learning disabilities die too often from avoidable causes because they are not getting access to the right healthcare and treatment at the right time, the Parliamentary and Health Service Ombudsman (PHSO) has warned.
A lack of understanding of the needs of people with learning disabilities was cited as one of the biggest barriers to achieving good care, according to recent case investigations by the Ombudsman Service. The investigations revealed alarming gaps in care provided for people with a learning disability, which meant that in some cases, vital opportunities to prevent their deaths were missed.
These included cases where the patient's condition was not diagnosed quickly enough, where proper checks to assess their initial condition were not made, and one case where a patient was deemed too 'difficult to assess' meaning their symptoms went unnoticed until it was too late.
Elsewhere, research by learning disability charity Mencap found that 75% of GPs have had no training in learning disability issues.
In addition, the Confidential Inquiry into the premature deaths of people with a learning disability (CIPOLD) revealed in 2013 that on average men with a learning disability died 13 years earlier than those in the general population. Meanwhile women with a learning disability died 20 years earlier than their non-disabled counterparts.
The CIPOLD report found that in many cases the reason for premature deaths of people with a learning disability was that there was a failure by service providers to meet their needs.
Complain for Change
Julie Mellor, Parliamentary and Health Service Ombudsman, said: “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.
“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. A Government study in 2013 found that out of 238 deaths of people with a learning disability 42% could have been avoided, and there are more cases where these patients should simply get better care throughout their lifetime.
“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.”
The Complain for Change campaign will advertise in hundreds of GP surgeries across London and promote the campaign nationally with patient advocacy groups, Healthwatch and the local NHS. This is the first time accessible information has been provided for people with a learning disability in GP surgeries on how to make a complaint. PHSO has also created a short animated video for people with a learning disability, which is being shown through advocacy groups and can be found at www.complainforchange.org.
The campaign seeks to drive forward change in health services by demonstrating how making a complaint can make a real difference and sometimes prevent avoidable deaths of people with a learning disability. Research has shown that people with a learning disability are one of the groups least likely to raise a complaint with the PHSO and tend to have a low awareness of its services.
Scandal on scale of Mid-Staffordshire
Jan Tregelles, chief executive of Mencap, added: “A scandal of avoidable deaths on the scale of Mid-Staffordshire takes place every single year for children and adults with a learning disability in the NHS. This tragic waste of life, often caused by poor care and delays in diagnosis and treatment, highlights the scale of discrimination faced by disabled patients in the health service.
“People with a learning disability and their families have waited too long for change, which is why we are glad to be working with the Parliamentary and Health Service Ombudsman to give people the tools they need to speak up and make their concerns known before it is too late.”
Care and Support Minister, Norman Lamb, welcomed the campaign as a “positive step” in addressing healthcare inequalities. “People with learning disabilities deserve the very best care from the NHS and to be treated with dignity and respect and as equal citizens - anything less is unacceptable,” he said. “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.”