Mencap comment on today’s full publication of the Mazars report into the high numbers of unexpected deaths of people with a learning disability that were not investigated at NHS Southern Health Trust.
Jan Tregelles, CEO of Mencap, said:
For families affected by the review into deaths at Southern Health Foundation Trust, fundamental questions continue to remain unanswered - what caused the deaths of their loved ones and were the deaths avoidable? The review into deaths at Southern Health has revealed a number of failings by the Trust, including a lack of family involvement in investigations, many of which were of poor quality, took too long to complete, and a lack relevant learning from the deaths took place. Only 4 out of 93 unexpected deaths of people with a learning disability were investigated, which Mazars conclude is inadequate.
The government and NHS must as a matter of urgency say how they will support every family to get answers about the death of their loved one.
Although the government and NHS England have outlined a number of recommendations to ensure that deaths are investigated they have not gone far enough to address the underlying reasons for avoidable deaths of people with a learning disability within the NHS. Previous research by academics has shown that 1,200 people with a learning disability are dying avoidably in the NHS every year and the causes of this are well known.
A lack of understanding of learning disability and institutional discrimination have continually been mentioned in previous reports and reviews, and the Mazars Review raises similar issues. The government and NHS England must act immediately to address the failures of care that have seen so many people with a learning disability tragically lose their lives within the health system.
Nicki and Sue’s story – a fight for justice
Nicki Rawlinson died on February 24th 2012, 26 years of age in Barnet Hospital, North London. She had a learning disability and had an operation for a twisted bowel at the hospital in October 2011. Nicki weighed under 5 stone when she died, losing almost 20% of her body weight whilst in hospital during the last three weeks of her life. She had weighed eight stone before the procedure.
Sue Rawlinson, Nicki’s mother, was supported by Mencap to apply for the Parliamentary and Health Ombudsman report that was published in May 2015. All three of the advisers for the report stated that other routes of nutrition should have been started weeks before her death. Tragically, none were. The neurology adviser even said that on the balance of probabilities, Nicki would have survived if she’d been given parenteral nutrition earlier.
Sue Rawlinson said:
The way my daughter died shows that the NHS doesn't put a value on the lives of people with a learning disability. The NHS didn’t take any responsibility until with the support of Mencap I forced them to investigate the death. This took a lot of time but finally I got some sense of justice. It's an absolute disgrace the way my daughter died. Today’s review is a timely reminder. The NHS must start treating the lives of people with a learning disability with the same value as anyone else's life.
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Notes to editors
There are 1.5 million people with a learning disability in the UK. Mencap works to support people with a learning disability, their families and carers by fighting to change laws, improve services and access to education, employment and leisure facilities. Mencap supports thousands of people with a learning disability to live their lives the way they want.
For advice and information about learning disability and Mencap services in your area, contact Mencap Direct on 0808 808 1111 (9am-5pm, Monday-Friday) or email firstname.lastname@example.org.
What is a learning disability?
A learning disability is a reduced intellectual ability which can cause problems with everyday tasks – for example shopping and cooking, or travelling to new places – which affects someone for their whole life.
People with a learning disability can take longer to learn new things and may need support to develop new skills, understand difficult information and engage with other people. The level of support someone needs is different with every individual. For example, someone with a severe learning disability might need much more support with daily tasks than someone with a mild learning disability.
Learning disability is NOT a mental illness or a learning difficulty. Very often the term ‘learning difficulty’ is wrongly used interchangeably with ‘learning disability’.