By Luke Haynes and Alex Turner
A review of the deaths of people with learning disabilities has found that more than one in eight were “adversely affected” by health and social care service failings.
Published last week, the Learning Disabilities Mortality Review (LeDeR) was carried out by the University of Bristol on behalf of NHS England and identified problems in 13 of the 103 cases it reviewed between July 2016 and November 2017.
This included issues surrounding delays in treatment, “organisational dysfunction” and abuse, leading to recommendations in the review for improved information sharing and electronic integration of health and social care records.
Local services were also advised to “strengthen their governance” around adherence to the Mental Capacity Act (MCA) as it identified a problem with the “level of knowledge” of some staff.
Seven months ago, the NHS trust responsible for the care of Connor Sparrowhawk, who died in an Oxford learning disability unit in 2013, pleaded guilty to breaching health and safety law following a criminal prosecution by the Health and Safety Executive (HSE).
A unanimous jury at an inquest in 2015 concluded that a series of “very serious failings” – including errors in bathing arrangements, inadequate epilepsy training and a lack of clinical leadership – had contributed to Connor’s death.
The LeDeR programme was set up in 2015 to support local areas to review deaths of people with learning disabilities, and to identify and enact service improvements.
Between 1 July 2016 and 30 November 2017, the programme was informed of 1,311 deaths. Yet, the review shows that just over 8% (103) of these deaths were investigated by the programme, with the introduction to the report citing a lack of capacity as the reason for a low review rate.
Of the 958 people aged above four years whose deaths were reported to the programme up to 1 April 2017, the review found the median age at death of people with learning difficulties was 58, with males (59) outliving females by three years. In comparison, the median age at death for the general population in 2010 was 82 years and 85 years respectively.
The median age at death for people with profound or multiple disabilities was lower yet at 41 years.
Younger people with learning disabilities were found to be more likely to die in hospital than older people, with 76% of those aged 24 and under dying in hospital, compared to 63% of those aged 65 and above.
The proportion of people with learning difficulties who died in hospital was greater (64%) than the proportion of hospital deaths in the general population (47%).
In 13% of cases, a person’s health was deemed to have been “adversely affected” by the care they received, according to the review which cited several case studies of poor care. These included one in which a man suffered possible sepsis – a common cause of death flagged by the report – after he was discharged with a catheter to staff who had no training on catheter care.
Greater awareness of MCA needed
In addition to recommending inter-agency collaboration and greater awareness of needs, another recommendation called for better “understanding and application” of the Mental Capacity Act.
The review identified issues around “the level of knowledge about the MCA” by a range of professionals, as well as concerns relating to capacity assessments not being undertaken, the best interests process not being followed and deprivation of liberty safeguards (DoLS) not being applied.
The review noted there had been “several references to lack of capacity” in hospital records but “no evidence” of a capacity assessment in records, adding that a capacity assessment form was “on file but not completed”.
More training from service providers to ensure professionals fully appreciate the requirements of the MCA in relation to their own role was another suggestion put forward.
Action across the board
Madeline Cooper-Ueki, the learning disabilities programme lead at the National Development Team for Inclusion (NDTi) charity, told Community Care the report highlighted the need for “greater action across the board”.
Cooper-Ueki said: “From the top of hospital trusts, to commissioners of services and the staff members that provide care and support, we need stronger communication between them all.
“This will only come when we ensure the voices of people with learning disabilities and their families are amplified in a way which shows this isn’t about preventing a number of deaths, but about caring for someone’s friend or child who would be missed if they are were no longer here,” she added.
A statement by the Challenging Behaviour Foundation, which supports people with learning disabilities and their families, described the LeDeR review programme is “an important initiative to continue to shine a spotlight on this scandal and drive change” but that evidence of systemic action and improvement was now needed.
“We await the urgent response of NHS England to the recommendations in the report, and more importantly we need to see the access to healthcare for people with learning disabilities that they have a right to.”
Martin Green, the chief executive of Care England, said the review would be discussed as a matter of urgency at the next scheduled meeting of the body’s learning disability provider members.
“The national learning this report presents should be key to improving care for people with learning disabilities across the whole health and care system,” Green said.
In the days since the review was published, shadow health and social care minister Barbara Keeley labelled Jeremy Hunt’s behaviour as “disgraceful” after he refused to answer her urgent question on LeDeR in the House of Commons on Tuesday afternoon.
The Labour MP said the findings showed “a much worse picture” than previous reports and highlighted some of the failures of the review process.
“Only 103 of 1,300 cases passed for review between July 2016 and November 2017 have been reviewed. That is a paltry number. The report cites a lack of local capacity, inadequate training for people completing mortality reviews and staff not having enough time away from their duties to complete a review. If there are issues around capacity and training, what is NHS England doing to rectify this?” said Keeley.
This issue was picked up by the public on Twitter who also reacted to the timing of the publication of the review.
Shocking statistics coming out of #LeDeR on gap in life expectancy & cause of unexpected deaths, not least that only 8% of reviews have been completed due to volume of deaths referred & inadequate resources having been committed by @NHSEngland to review them
— Neil Crowther (@neilmcrowther) May 4, 2018
— Rhidian Hughes (@rhidianhughes) May 4, 2018
Health and social care minister Caroline Dinenage outlined the government’s commitment to reducing avoidable deaths. “We are determined not only to learn from every single one of these tragic and avoidable deaths, but to share that learning with those in trusts up and down the country so that they can take a clear look at what is going on under their noses and ensure that the terrible incidents that we have seen in the past do not happen again,” she said.
“It is important to have specialist practitioners, but [also] to ensure that all healthcare staff, throughout the country, have the training they need to recognise and support the needs of people with learning disabilities.”