An NHS England review of deaths of patients with learning disabilities has revealed that 13% of cases involved serious problems with care, such as treatment delays or abuse.
The Learning Disabilities Mortality Review (LeDeR) Programme is being carried out by the University of Bristol on behalf of NHS England.
“Most of the learning to-date echoes that of previous reports of deaths of people with learning disabilities”
It was set up to help local teams improve care following recent high-profile cases, such as that of Connor Sparrowhawk, who died while being looked after by Southern Health NHS Foundation Trust. The review team was notified of 1,311 deaths between July 2016 and November 2017.
Nurses were the most common staff group to notify the programme, with 25% of referrals made by those mainly working in community learning disabilities teams. Of the 1,311 deaths, 103 had been reviewed by the programme by November 2017.
The reviews revealed that in 13 cases “the person’s health had been adversely affected by one or more” of either delays in care or treatment; gaps in service provision; organisational dysfunction; or neglect or abuse, according to a report by the programme team, published today.
Examples of care failings included one case in which a person was discharged home with a catheter, but the care staff had never been trained in catheter care. The person was later readmitted to hospital with possible urinary sepsis.
In another example, the review team found “several delays” to a patient’s hospital care and treatment. They found that staff failed to monitor the patient using a recommended system – the Modified Early Warning System (MEWS) – and blood tests were not taken while the person was in hospital.
There was also no explanation in medical or nursing records about the course of treatment the patient received.
The review team’s report also highlighted an instance in which a patient who could not speak up for themselves did not have their long-term conditions coordinated by a professional.
“We have a responsibility to families and others to ensure that any learning points at individual level are taken forward”
Treatment for the patient’s weight loss took months, the identification of kidney stones also took months and limited pain relief was being given, said the report.
In addition, identification of a urinary infection they developed towards the end of their life, and antibiotic treatment for it, should have occurred sooner, it added.
The review report also found there was “no recognition” before the patient died of pyelonephritis, which was the cause of death.
A total of 189 recommendations were drawn up from the reviews of 103 cases.
Overall, the three most commonly reported areas for improvement were related to collaboration and communication, awareness of the needs of people with learning disabilities, and understanding and application of the Mental Capacity Act.
Nine national recommendations were made based on the reviews. These include all people with learning disabilities with two or more long-term conditions having a named care coordinator, and greater electronic integration of health and social care records to ensure staff can communicate effectively.
“Learning from incidents is a vital part of improving the experience of people with learning disabilities”
“Most of the learning to-date echoes that of previous reports of deaths of people with learning disabilities, and the importance of addressing this cannot be over-estimated,” said the report.
“We have a responsibility to families and others to ensure that any learning points at individual level are taken forward into relevant service improvements as appropriate,” it added.
Meanwhile, among the 1,311 deaths reported to the team, less than half (576) included a cause of death. Of these, 31% had an underlying cause related to diseases of the respiratory system and the second most common reason was circulatory system diseases, in 16% of cases.
The report noted the cause of death in the remaining half of cases would be identified once reviews had been carried out.
Commenting on the report findings, NHS Providers’ head of policy, Amber Jabbal, said there were still too many people with learning disabilities not receiving the care the need.
“All providers understand the need to ensure that they are making the right adjustments to meet the needs of people with learning disabilities and ensure they are picked up early enough within a care setting,” said Ms Jabbal.
“Delays in access to appropriate care and not having staff with the correct training and awareness of the needs of people with learning disabilities are impacting on quality of care,” she said.
“This report makes a series of useful recommendations for acute and mental health trusts to act upon. Sharing best practice and learning from incidents is a vital part of improving the experience of people with learning disabilities,” she added.