Two learning disability charities are calling for an independent inquiry into the death of any person with a learning disability in an inpatient unit after a coroner criticised the care planning in a case of young woman who died in such a unit.
The call, by Mencap and the Challenging Behaviour Foundation, came after the conclusion of the inquest into 25-year-old Stephanie Bincliffe, who died last summer in Linden House – a private assessment and treatment unit run by The Huntercombe Group. Stephanie had a learning disability, autism and behaviour that challenged.
When she was 18, Stephanie was admitted to Linden House, where she was isolated in a padded room for almost 7 years with no access to fresh air or exercise. Stephanie gained over 10 stone in weight while in the unit, putting her life in danger. She had no access to food other than what staff gave her and was almost 26 stone when she died.
Stephanie’s death was caused by heart failure and sleep apnoea, due to obesity. Coroner Professor Marks determined that there was no cohesive plan in place to manage Stephanie’s weight and challenging behaviour, but also stated he didn’t believe any of the options to treat her weight could have been implemented effectively.
The Huntercombe Group, which ran the assessment and treatment unit Stephanie died in, has settled with the family and paid damages, and will also be issuing a letter of apology to the family.
Nancy Collins, a specialist solicitor at Irwin Mitchell representing Stephanie’s family at the inquest, said: “This case highlights real concerns about the quality of the care and management provided to people with severe learning difficulties, including when they are detained under the mental health act.
“Some of the evidence at the inquest criticised the hospital’s management of Stephanie’s physical health and obesity. The evidence highlighted the failure of hospital staff to act in her best interests regarding her weight gain, contrary to the requirements of the Mental Capacity Act. It is imperative that lessons are learned from Stephanie’s tragic death to prevent similar deaths in future.”
Professor Tony Holland, a psychiatrist, based at the University of Cambridge, said there should have been a clear plan in place to address Stephanie’s weight and eating habits: “I would expect a specialist service to make proper attempts to try and treat someone with complex needs and to bring in expertise if they are unsure how to do this. There should have been a clear plan in place to address Stephanie’s weight and eating habits from day one. This did not happen and it could have saved her life.”
Stephanie’s mother, Elizabeth Bincliffe, said: “I was told that the Mental Health Act was designed to help and protect people like Stephanie. Yet sectioning her to a hospital miles from her home caused her immense confusion and distress, and the people caring for her didn't fully understand her and did not adequately protect her.”
“Stephanie was a beautiful young woman and daughter. When you earned her trust and she let you in to her world, the connection you made was magical. I feel honoured to have been Stephanie’s mother and to have shared those moments with her. I wake in the night and think of her. I miss her everyday. I have lost my daughter and am left with an aching pain and immense sadness.”
Jennifer Bincliffe, Stephanie’s sister, added: “Beyond question Stephanie was a unique individual who was a teacher in disguise to those who listened. I feel there are no words to begin to describe her loss to me; however I feel this was her final lesson to us all.
“Stephanie had a beautiful mind which was often misunderstood; my life has an emptiness now she has gone. My only sanctuary is that now she is truly free. Anything that happens now as a result of her passing on will be bittersweet for me. As a family we relentlessly did all that was possible for us to do in our power, to no avail. We felt that we had no voice and we could only watch in agony as the one we loved and knew deteriorated and faded away.
“As a family fighting for Stephanie it felt like a real life David and Goliath battle but with no triumphant ending for the underdogs.”
Mencap and The Challenging Behaviour Foundation supported Stephanie’s family throughout the Coroner’s Inquest. The charities are calling for an independent inquiry to be opened into the death of any person with a learning disability in an inpatient unit.
Jan Tregelles (pictured), chief executive of Mencap, and Vivien Cooper, CEO of The Challenging Behaviour Foundation, said: “At just 25 years of age, Stephanie had her whole life ahead of her. But her life was tragically cut short when the service entrusted with her care failed to look after her. We are deeply disappointed that the Coroner’s judgment does not reflect the seriousness of the failings of the service, which we believe were revealed during the inquest.
“The idea that Stephanie’s behaviour made her too difficult to treat is unacceptable. The evidence at the Inquest suggested Stephanie’s complex needs were not properly managed and there were no real attempts to put plans in place. That is inexcusable.
“Stephanie was wholly dependent on staff at the unit to meet her health and care needs, yet they completely failed her. Despite her family repeatedly raising concerns, no clear plan was put in place to manage her obesity. All of these factors contributed to her death. How was this tragedy allowed to happen?
“A system that allows our most vulnerable citizens to experience such basic failures in care is fundamentally flawed. Last year, in the space of just one month, we know that Stephanie and another young person with a learning disability died in different assessment and treatment units. And these are just the cases that we know about.
“It is shocking enough that people with a learning disability are living long-term in assessment and treatment units – that they are dying in them is beyond belief. We call on the Department of Health to urgently instigate an independent inquiry into any death of a person with a learning disability in an inpatient unit.
“We owe it to Stephanie, her family and the thousands of people with a learning disability who are still stuck in assessment and treatment units to make sure that no-one else’s life is put at risk. The Government, NHS and local authorities must now deliver a concrete plan and the long-promised changes needed to ensure that people with a learning disability get the right support and services in their local communities. This is a matter of life and death.”