Media Media releases Ben King: Inquest finds failures in care of man with Down’s syndrome at Cawston Park Hospital 13 July 2021 Before HM Senior Coroner Jaqueline Lake Norfolk Coroner’s Court28 June – 9 July 2021 Ben King, a man with Down’s syndrome and a severe learning disability, died after spending over two years at Cawston Park Hospital in Norwich on 29 July 2020. An inquest has concluded making a number of criticisms of the care he received. Ben’s was the third contentious death to take place in Cawston Park Hospital since 2018. The hospital had been in special measures since 2019, and formally closed on 12 May 2021. Ben was 32 years old when he died. He was born and raised in Norfolk. His mother describes him as a friendly and loveable person who enjoyed swimming and spending time with his dogs. He had lived with his mother for all of his life but, due to her falling ill, had to be taken into care. Ben had Down’s syndrome, a severe learning disability, ADHD (Attention Deficit Hyperactivity Disorder), and communication difficulties. Following an incident at a care home, Ben was transferred to Cawston Park Hospital on 8 July 2018. From this point on, he was continually detained there under the Mental Health Act until his death two years later. Ben had obstructive sleep apnoea, which is particularly common in people with Down’s syndrome. It affects breathing during sleep but is not usually life threatening. A key treatment involves wearing a firm, heavy facial mask called CPAP for long periods, which Ben struggled with. As a long term consequence of sleep apnoea alongside obesity, a person can develop obesity hypoventilation syndrome, a breathing disorder. Without weight loss, this can increase blood pressure and breathlessness, and lead to death. The charity Mencap provided 1:1 support for Ben from April 2017 to June 2019, including outdoor activities and exercise which had helped manage his weight. The inquest heard that, after they stopped providing support due to a lack of funding, hospital staff reported that Ben did not engage as much in planned activities. Ben’s weight went up by more than two stones in the months prior to his death. During the inquest evidence was heard that, despite Ben’s dramatic weight gain and the associated risks of weight gain alongside sleep apnoea, the Multi-Disciplinary Team at Cawston Park did not identify weight loss as a goal for Ben. Evidence was also heard at how the number of physical activities Ben was offered dropped considerably at the end of 2019. Ben was taken to have unhealthy fast food on multiple occasions. Whilst at Cawston Park, Ben was prescribed the sedative promethazine. This was initially to help him comply with his CPAP machine but the drug was then used to control agitative behaviour. Sedatives can be highly dangerous in conjunction with respiratory issues, however care staff told the inquest they were not aware of these risks. A few weeks before his death, Ben was taken to A&E on three separate occasions as a result of low oxygen saturations and breathlessness. He was not admitted to general hospital on any of these occasions. The inquest heard expert evidence to suggest that a diagnosis of obesity hyperventilation syndrome was possibly missed on these occasions. During the early hours of the morning on 28 July 2020, staff recorded that Ben had very low oxygen saturations of 35%. Ninety-five to 100% are considered normal, where oxygen saturations under 70% are life threatening. These low levels were continually recorded over the next 24 hours, and Ben presented as drowsy and unwell, at times with blue lips and fingernails. Staff were increasingly concerned. However, the consultant was called and advised against using oxygen or calling 999. Ben’s mother came to Cawston Park that morning and, upon seeing the condition of her son, asked for an ambulance to be called. Ben came outside to see her and begged to go home. She told him she would take him home tomorrow, when the section was due to end, but had to leave as she knew he would not go inside otherwise. In the evening Ben became agitated and was given the promethazine as a sedative, in accordance with instructions to calm him. At 1.15am his oxygen saturations were recorded for the last time, at 35%. Just before 3am he went to sleep on his stomach, despite the treatment plan discouraging this. No observations were recorded again until 5.05am. At 6am Ben was struck twice by a member of staff. Another member of staff who was observing Ben did not offer him assistance when he fell backwards when trying to get up onto the sofa at approximately 06.30am. CCTV then shows the observing staff member facing the ceiling for several minutes, not Ben. He said he heard Ben breathing so was not concerned, then left the room. An expert told the inquest that it appears Ben took his last breaths between 6.50 and 7am. At 7.07am, a nurse came into Ben’s room. She could not rouse Ben, and called 999. CPR commenced and paramedics arrived in 17 minutes. Ben was taken to A&E and admitted to the Intensive Therapy Unit at Norfolk and Norwich University Hospital, where he died that evening. An expert told the inquest that, but for the weight gain, it is unlikely that Ben would have developed respiratory deterioration in July 2020. They also said that if his weight had come down this would likely have corrected his problems. After two weeks of evidence, on 9 July 2021 the inquest into his death concluded that Ben “died due to inadequate weight management and failure to diagnose obesity hypoventilation syndrome and inadequate consideration of the use of promethazine.” The inquest jury also found that there was a “failure to diagnose obesity hypoventilation syndrome and inadequate consideration of the use of promethazine”. As well as a “failure to identify the seriousness of a life-threatening situation”. A decision on whether a report to prevent future deaths will be issued is awaited. Gina Egmore, mother of Ben King said: “Throughout the two weeks of the inquest I had to listen to and watch some truly harrowing evidence, including CCTV showing staff at Cawston Park twice striking my son and failing to raise the alarm when he went into cardiac arrest. I looked after Ben for the first 30 years of his life, and I expected that he would be properly cared for when he was transferred to Cawston Park. However, the evidence heard at the inquest suggests this clearly wasn’t the case. Whilst nothing can ever make up for the devastating loss of Ben, given the jury’s conclusion I can take some comfort from knowing that I managed to obtain justice for my son.” Carl Rix of Fosters solicitors, who represent the family, said: “Throughout the inquest process Gina has raised numerous concerns about the quality of care her son received at Cawston Park, and the jury’s findings certainly vindicate these. She has shown immense bravery in seeking justice over the last year, and it was a privilege to have represented her in this tragic case.” Lucy McKay from charity INQUEST said: “Ben was a man with multiple care needs, left to languish and decline, detained in a failing hospital for two years. Despite the love and commitment of his mother, they were let down by the very people who should have been specialists in keeping him healthy and safe. Particularly in his final moments, it appears staff lost sight of Ben’s humanity and their duty to protect him. Like far too many deaths of people with learning disabilities, Ben’s death was premature and preventable. It took place in a hospital which regulators knew was inadequate, where at least two other people had already died. National action on the provision and standard of care for people with learning disabilities is urgently needed and long overdue.” ENDS NOTES TO EDITORS For further information and to note your interest, please contact Lucy McKay on 020 7263 1111 or [email protected] The family were represented by INQUEST Lawyers Group member Carl Rix of Fosters Solicitors and Jonathan Metzer of 1 Crown Office Row. Jeesal Cawston Park, Norfolk & Norwich Hospital, the Care Quality Commission, the Clinical Commissioning Group, Norfolk County Council, Norfolk Safeguarding Adults Review Group and a number of individual clinicians were also interested persons to this inquest, some of whom were legally represented. Cawston Park hospital closed on 12 May 2021, after Care Quality Commission (CQC) inspectors reported the provider who ran the hospital (Jeesal Cawston Park) was "unable to demonstrate improvements". Joanna Bailey, a 36 year old woman who had learning disabilities, died of sudden unexpected death in epilepsy at Cawston Park in April 2018. An inquest heard she was not checked for two hours that night, despite 30-minute checks being in her care plan. See media release. Also see these blogs on Joanna by George Julian for more information. Nicholas Briant, 33, died at Cawston Park on 31 October 2018. He had learning disabilities and a known history of consuming objects. He died after swallowing a piece of plastic cup. See media coverage. An inquest found his death was by misadventure. In another mental health hospital, The Dene hospital in Sussex, Kate Stamp, 30, died on 26 March 2015. Her death was caused by a lack of oxygen in the body (hypoxia) related to the anti-psychotic drug Clozapine, causing sudden heart failure. Several underlying physical health issues were causative factors, including significant weight gain and a lack of response to probable sleep apnoea which was linked to obesity. The coroner highlighted the lack of any effective national weight gain monitoring programme for mental health inpatients. See media release.