Autistic woman died after choking care plan ignored

An autistic woman died after choking on a sandwich as care staff failed to follow a plan stating her food should be cut into bite-sized pieces, a review has found.

Helen Burnell, 60, died in July 2019 after the incident at Somerset Court, a residential campus run by the National Autistic Society (NAS), where she had lived for 45 years.

A Safeguarding Adults Review has now been published into Ms Burnell's care, which follows a Prevention of Future Deaths report issued by the coroner in 2022 after the inquest into her death.

The NAS said Ms Burnell's death had been "a tragedy and an unimaginable loss for her family" and that it had improved training for staff over the risks of choking.

One of the other homes on the Somerset Court campus, in Brent Knoll, closed in 2016 after a safeguarding report found residents were subjected to "cruel behaviour".

The NAS took a decision in 2020 to close Somerset Court, and the last residents have moved out before it is sold this summer.

As well as being autistic, Ms Burnell had a learning disability, facial palsy and was non-verbal.

On 13 July 2019 Ms Burnell ate her supper, including a sandwich cut in half, while sitting on her bed.

Her support worker noticed her choking, first aid was given and they called 999. Paramedics took Ms Burnell to hospital but she died three days later.

In October 2018, a speech and language therapist had assessed Ms Burnell's eating and swallowing and devised an eating and drinking care plan, which was sent to Somerset Court management.

This said Ms Burnell would "overload" her mouth and food should be cut into bite-sized 1.5 x 1.5cm pieces for her, and she should be encouraged to eat slowly.

But the safeguarding review found that the care plan was "not readily available" to the staff who were looking after Ms Burnell on a daily basis.

The review said there have been 15 changes to practice by local speech and language therapists following the death of Ms Burnell.

The prevention of future deaths report from the coroner in 2022 also said there should be better training for staff around the risk of choking in adults with a learning disability and autism.

The review found there had been a number of other significant events in the last 16 months of Ms Burnell's life.

Her anti-psychotic medication had been reduced, apparently leading to an increase in anxiety and "deterioration in her behaviours".

This was the second attempt to reduce her medication by local consultant psychiatrists as part of a national NHS programme called STOMP: 'Stop over medicating people with a learning disability, autism or both'.

However, care staff reported she was "unable to relax, struggling with normal activities and unable to sit for more than a minute before feeling the need to get up and touch objects and items" and the medication was increased again.

Ms Burnell's family were among the founding members of Somerset Court in the 1970s and she had been among the first residents to move in, coming from London and spending her whole adult life living there.

This meant she remained under the care of a London-based social worker, despite living in Somerset for many decades.

The review said this did not "ensure safety".

"Out of sight and out of mind is never going to be right and nationally this needs to be improved as a matter of urgency," the report said.

Caroline Stevens, chief executive of the NAS, said Ms Burnell had "lived with us for over 40 years in one of our residential homes, and her loss was felt very deeply by the staff who cared for her".

"We accept the findings and recommendations of the Safeguarding Adults Review," she added.

Ms Stevens said since 2019 the NAS had "reviewed and updated policies and systems locally and nationally. This included briefings, hosting workshops and rolling out additional training, especially around the risks of choking".

She added: "Over the past six years, we have continually strengthened our leadership and oversight to ensure that the safety and wellbeing of the people we support is, and always will be, our absolute priority."

Prof Michael Preston-Shoot, independent chair of the Somerset Safeguarding Adults Board (SSAB), which carried out the review, said Ms Burnell's "tragic story has highlighted that further work is required to sharing information across our organisations to safeguard those with support and care needs and learning disabilities in Somerset.

"I am pleased to see that the organisations involved were open to these improvements and lessons have been learned with many changes having already been implemented. I will now work with SSAB partners to ensure that this learning becomes normal practice."

Follow BBC Somerset on Facebook and X. Send your story ideas to us on email or via WhatsApp on 0800 313 4630.