Too many people with a learning disability are not getting access to the right care and treatment at the right time, leading to avoidable deaths in some cases. One of the biggest barriers to achieving good care for people with a learning disability is an overall lack of understanding of their needs, according to recent case investigations by the Ombudsman Service.
These cases showed 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 the proper checks to assess their initial condition were not made, and in one case where a patient was deemed too ‘difficult to assess’ meaning their symptoms went unnoticed until it was too late.
Julie Mellor, Parliamentary and Health Service Ombudsman said: “It is tragic that the lives of people with a learning disability are in some cases being cut short because they are not 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.”
To address this issue, the Parliamentary and Health Service Ombudsman is launching the Complain for Change campaign (www.complainforchange.org) to tell people how they can complain, so that 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. While 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,” Julie Mellor commented.
There has also been a call for policy makers to address this inequality, by the British Medical Council, which recently published a report, Recognising the Importance of Physical Health in Mental Health and Intellectual Disability. This report highlighted the excess morbidity and mortality in people with mental illnesses and intellectual disabilities, pointing out that a person in England and Wales with intellectual disability will die about 16 years earlier than average, with more than double the number dying before the age of 50.
Speaking at a Lords seminar to mark the launch of the report, the NHS England clinical director for learning disability, Dominic Slowie announced that the NHS will now review premature mortality in people with learning disabilities in England, following BMA recommendations. Dr Slowie said: “One of the recommendations that is in the report [says] there should be a national mortality review body in the UK for premature mortality for people with learning disabilities. It has made it into the NHS England business plan and we will be funding a commitment that [the] national mortality review function will be in place by March 2015. It is not going to, by itself, reduce mortality but gives us the data on which we can act to reduce mortality and think about interventions that will make a difference.”
NHS England primary care commissioning is also drawing up a strategy to improve the annual health checks for people with learning disabilities, which should be available later this year. There are plans to extend this to people from the age of 14 and allow GPs to decide whether a person has a learning disability or not, without insisting that they are on a local authority register in order to qualify. A preventive action plan will then be produced.
