Poor care, abuse blamed for deaths of 13 people with learning disabilities

Thirteen people with learning disabilities died in England due to substandard care, neglect or abuse over a 16-month period, a report says
Connor Sparrowhawk, 18, who had learning disabilities and epilepsy, died after
being left unsupervised while bathing at a care and assessment unit in 2013.

Thirteen people with learning disabilities died in England due to substandard care, neglect or abuse over a 16-month period between July 2016 and November last year.

The figure is revealed in the Learning Disabilities Mortality Review annual report, which contains 189 learning points and recommendations taken from 103 deaths of people with learning disabilities in that time.

However, the true scale of deaths of people with learning disabilities due to substandard care may be much higher, with the 103 reviewed deaths a fraction of the total of 1,311 cases submitted to review programme.

Timeliness challenging

The report acknowledged the timeliness of the reviews had been ‘challenging’, listing a lack of people trained in the methodology to review learning disabilities deaths and the process not being formally mandated as some of the factors.

The report’s authors also said some NHS and social care organisations had indicated overstretched budgets and staffing pressures had affected contributions to the review.

University of Nottingham professional lead for learning disability nursing Helen Laverty said the report should show that ‘enough is enough’.

Disheartening figures

‘The figures are disgraceful and demonstrate that while people with a learning disability may have some higher prominence in the media there are hundreds of people who are still dying and waiting to die because of indifference,’ Ms Laverty said.

She said one particularly concerning statistic was the insufficient proportion of reports by hospital-based staff.

‘Of all the figures presented the one that disheartens me most is that the biggest reporting practitioner was the learning disability nurse with 25%, when 64% of deaths were in hospital,’ she said. ‘Why aren’t the acute staff reporting them?’

Responding to the report an NHS England spokesperson said it supported all of the report’s recommendations and was already implementing some of them. ‘These early lessons will feed into hospital and community services work including early detection of symptoms of sepsis, pneumonia prevention, constipation and epilepsy, where there is significant progress.’ 

Speeding up reviews

The spokesperson also said £1.4 million will be invested in ramping up the speed of such reviews. The programme, commissioned by the Healthcare Quality Improvement Partnership on behalf of NHS England, is led by the University of Bristol.

A Department of Health and Social Care spokesperson said it was committed to supporting the programme and the reporting of deaths. ‘We’re committed to reducing the number of people with learning disabilities who die young,’ the spokesperson said.

‘That’s why we have introduced a new legal requirement so that from July every trust will have to publish data on case reviews of deaths of people with learning disabilities, and provide evidence of learnings and improvements.’

Key recommendations from the report

  • Strengthen collaboration and information sharing, and effective communication, between different care providers or agencies
  • Push forward the electronic integration (with appropriate security controls) of health and social care records to ensure that agencies can communicate effectively, and share relevant information in a timely way
  • Health Action Plans developed as part of the Learning Disabilities Annual Health Check should be shared with relevant health and social care agencies involved in supporting the person (either with consent or following the appropriate Mental Capacity Act decision-making process)
  • All people with learning disabilities with two or more long-term conditions (related to either physical or mental health) should have a local, named healthcare coordinator
  • Mandatory learning disability awareness training should be provided to all staff, delivered in conjunction with people with learning disabilities and their families
  • A national strategic approach for the training of those conducting mortality reviews or investigations, with a core module about the principles of undertaking reviews or investigations, and additional tailored modules for the different mortality review or investigation methodologies

Further information

The Learning Disabilities Mortality Review Annual Report 2017

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