Learning Disability Mortality Review (LeDeR) Programme Annual Report

The LeDeR programme is a joint research programme between the University of Bristol and NHS England. The programme was set up in 2016 to collate and report on the deaths of people with learning disabilities, following concerns about the accuracy of the recording of the underlying causes of death. The report published in 2019 has found that these concerns were correct.

The 2019 report found that in 11% of the deaths it included, there were issues arising from delays in diagnosis and treatment of illnesses and the quality of care that an individual had received prior to their death. 12% of cases indicated that delays in provision of care adversely affected an individual’s health. Problems with organisational systems and processes were recorded in 13% of cases, and gaps in service provision contributed in 7%.

The report found that 71 adults with learning disabilities received care that fell so far below good practice that it directly impacted on their well-being or contributed directly to their cause of death. A review of 112 deaths notified to the programme concluded that 19% of those deaths were potentially avoidable.

Of key concern to the report was the use of Do Not Attempt Cardio-pulmonary Resuscitation (DNACPR) Orders. DNACPR Orders would usually be put in place if there was a medical reason that a patient should not be resuscitated, but their findings indicated that in 19 cases, the “DNACPR included reasons not to resuscitate which related to judgements on the individuals’ quality of life: ‘Down’s syndrome, learning difficulties, cognitive decline”, rather than being focused on the medical reasons.
The report also looked at the use of antipsychotic medication; finding that “there is a higher rate of prescribing psychotropic medicines among people with learning disabilities than the general population although they may not have the health conditions for which the medicines are prescribed”.

But what do all these figures mean in reality?

Individuals diagnosed with learning disabilities are often very vulnerable. They can be reliant on others for many aspects of their lives, including elements of their personal and health care. Research (including the LeDeR) has shown that they are at increased risk as a result.

In 2009, Paul Ridd died from natural causes contributed to by hospital neglect. He has significant learning disabilities and poor communication skills. His inquest found that his care was substantially below the expected standard following an operation on his bowel and that nurses failed to comply with directions given by clinicians.

In 2017, Sally Lewis died after her bowel became blocked. Sally lived in supported living, with care provided by a private care company. She had a long history of constipation, but when she became unwell she was not taken to see a doctor. She subsequently died. Although her report was recorded initially as natural causes, Sally’s family called for an inquest, which is due to take place in July 2020. Key to their concerns was that Sally had not been administered her prescribed laxative for 9 months prior to her death and that Sally’s healthcare was not attended to because she had learning difficulties.

In 2018, Rachel Johnston died after having all her teeth removed. Rachel suffered from severe tooth decay and the decision was made by her dentist to extract all of her teeth at the same time. Rachel collapsed following the surgery and died 10 days afterward. Her family raised concerns about the major nature of the operation and whether all her teeth needed to be removed at the same time.

The data included in this report seems to show that decisions about the welfare of those with learning disabilities are still not being made with their best interests as the overriding aim.

I hope that the relevant authorities are able to take what has been found here and use it to provide real improvement for vulnerable people whose lives are being cut short.

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