19 December 2019

Before HM Area Coroner Christopher Morris
Stockport Coroner’s Court
9 – 19 December 2019

The inquest into the death of Ryan Mason, 30, has today concluded with the jury finding that he died of natural causes contributed to by neglect. They found he died as a consequence of epilepsy. Ryan was born with a rare genetic disorder, Johanson Blizzard syndrome and was diagnosed with learning disabilities, epilepsy, Type 1 Diabetes and was partially sighted. On 26 February 2017, Ryan was found collapsed in the bathroom in his apartment, where he received care and support services from staff employed by Imagine, Act and Succeed (IAS).

In March 2016, Ryan moved into the supported living apartment. He was unable to leave his flat without staff support due to his needs. In October 2016, Ryan suffered his first three ‘grand mal seizures’, a seizure which causes a loss of consciousness and violent muscle contractions, when previously he had only suffered from ‘petit mal seizures’, moments of absence which lasted a few seconds. His GP prescribed a higher dose of medication and the neurologist requested to be informed of any further seizures to consider whether the medication needed increasing or changing. There were a further two grand mal seizures prior to January 2017, however the neurologist was not informed for a review.

Ryan’s risk of having an epileptic seizure was monitored by a range of equipment and technology including various sensors and a camera in the flat with a relay to Imagine, Act and Succeed support workers. It was agreed at a multi-disciplinary meeting on 19 January 2017 that an epilepsy ‘Smart Watch’, designed to alert support workers to seizure activity with a listening system connected through an iPod, would be obtained for Ryan. The watch was introduced on the 10 February 2017.

A manager at Empatica, who created the ‘Smart Watch’, told the inquest that testing shows that both the watch and iPod were in working order but were out of charge on the night Ryan died. It had last been charged at 2.34pm on 24 February and taken off at 5.05pm the same day. The watch ran out of charge 31 hours later. The inquest heard that there was no formal training, written guidelines or risk assessments of the epilepsy monitoring watch for Ryan’s support staff employed by Imagine, Act and Succeed.   

Ryan’s neurologist told the inquest that if patients are monitored by a listening device, which the watch was likened to, this can decrease the risk of sudden unexpected death in epilepsy (SUDEP) by 90%. On the balance of probabilities, he said that the detections of a seizure would have likely prevented death.

The jury concluded that Ryan’s death was probably contributed by:

• Inadequate charging of his Epilepsy watch and iPod by his support worker the day prior to his death;
• The absence of any formal training in respect of the watch and its safe and effective use;
• The absence of any formal assistance technology guidelines in the context of Ryan’s specific needs;
• The absence of a checklist which requires the support worker to charge and check the watch and iPod and record that this had been done.

The jury found that the following were possible causes:

• The withdrawal of Waking-Night care;
• The failure of the care provider staff and the GP practice to notify the neurologist of the fourth and/or fifth grand mal seizures.

Ryan was from Trafford, Manchester and lived with his parents until he was 25 years old. Ryan’s parents described him as a loving boy with a great sense of humour. He enjoyed rock music, supported Manchester United and had a keen interest in falconry.

Imagine, Act and Succeed were his care providers for nearly four years. His managers and some members of his support team had worked with him over that whole period. A collective decision had been made for Ryan to live as independently as possible and in March 2016, in partnership with Trafford Housing Trust and Trafford Council, arrangements were put in place for him to live in his own apartment with input from support workers.

Kelly Darlington, solicitor for the family said: “The inquest into Ryan’s death revealed a number of failings in the monitoring and management of Ryan’s epilepsy to prevent the risk of a serious and fatal epileptic seizure occurring. The high risk of such a seizure occurring was the reason why the epilepsy monitoring watch was introduced, and it is extremely tragic to learn that due to a lack of training of staff in ensuring the devices were appropriately charged at all times, staff were not alerted to Ryan having a seizure which ultimately led to his death.”

Deborah Coles, Director of INQUEST said: “The premature deaths of people with learning disabilities are all too common. This wide-ranging inquest has provided important scrutiny upon the circumstances of Ryan’s death, with damning findings which must now be used to inform urgent change for all those with learning disabilities and epilepsy.

Technology cannot replace proper care, and in fact depends upon proper systems of care and maintenance as evidenced by this inquest. That the charity responsible for Ryan’s care implemented the use of an epilepsy ‘Smart Watch’ to assist, without full training or clear instructions for their staff, is disgraceful.”

ENDS

NOTES

For more information contact the INQUEST Communications Team on 020 7263 1111 or Lucy McKay and Sarah Uncles on [email protected] and [email protected].

The family is represented by INQUEST Lawyers Group members Kelly Darlington of Farleys Solicitors LLP and Simon Murray of St John’s Buildings.

The other Interested Persons represented at the inquest are:

• Trafford Metropolitan Borough Council
• Imagine, Act and Succeed (IAS)
• A support worker who at the time worked at Imagine, Act and Succeed
• Salford NHS Foundation Trust
• A GP at Urmston Group Practice

Other relevant cases:

Connor Sparrowhawk, 18, died in July 2013 when he drowned in the bath as a result of an epileptic seizure whilst in a unit run by Southern Health NHS Foundation Trust. The jury concluded that his death was contributed to by neglect. An independent investigation found Connor’s death was preventable and there were significant failings in epilepsy management and clinical leadership. Media Release, October 2015.

Danny Tozer, 36, died from epilepsy in September 2015 when he was in supported living accommodation. The coroner found that there was insufficient communication between Danny’s family, care providers Mencap and City of York Council who commissioned the care. Media Release, April 2018.

Premature deaths of people with learning disabilities:

• People with learning disabilities have poorer health and shorter life expectancy than those without. The latest statistics from NHS digital found that males with learning disabilities had around a 14 year shorter life expectancy than the general population.
• Epilepsy is more common in people with a learning disability than in the general population. About 1 in 3 people (32%) who have a mild to moderate learning disability also have epilepsy. The more severe the learning disability, the more likely that the person will also have epilepsy. (Epilepsy society)
• 42% of deaths of learning disabled people are considered to be premature, and over a quarter are amenable to better-quality healthcare, found the first largescale inquiry of its kind published in 2013, The report of the Confidential Inquiry into premature deaths of people with learning disabilities (CIPOLD).