Liam Arthur, a talented gymnast and nature enthusiast, struggled with severe symptoms of Obsessive-Compulsive Disorder (OCD). His mother, Michelle Arthur, is now advocating for better support and treatment options for those with severe OCD, a condition that affects up to 2% of the U.S. population, or about 6.5 million people.

Michelle Arthur shows me her garden, a place filled with memories of her son. Almost all the plants were chosen by Liam, who had a passion for the natural world and dreamed of turning the garden into an orchard. Now, the garden serves as a tribute to Liam, with placards bearing his name standing proudly under his favorite hawthorn tree.

Michelle believes that if Liam had been referred for specialist inpatient treatment for his OCD, he would still be alive today. “The criteria that’s set excludes the most vulnerable and disabled patients that are crippled by their OCD,” she says. “They’re the ones that need the help the most but they’re the ones that fall through the net.”

Warning: this story deals with sensitive topics

Liam’s struggles with OCD began after he dropped out of university and returned home to Sutton, south London, in March 2017. Michelle noticed small changes in his behavior, such as hoovering the house more frequently and rearranging items in the supermarket. The severity of his symptoms became apparent when she caught him washing his hands with diluted bleach.

Liam also became more secluded, avoiding friends and restricting his eating. He confessed to his mother that he felt infected and had to carry out certain rituals to protect his family. In September 2018, Liam was assessed and diagnosed with OCD.

What is OCD?

Obsessive-compulsive disorder is a common mental health condition that affects up to 2% of the U.S. population, or about 6.5 million people. A person with OCD typically has obsessive, intrusive thoughts accompanied by compulsive behaviors.

Dr. Amita Jassi, a consultant clinical psychologist at the South London and Maudsley NHS Foundation Trust, says there’s a misconception that OCD is predominantly about “contamination and cleaning,” but it can involve a range of obsessions, such as religious or cultural customs.

“When people say ‘I’m a little bit OCD,’ that presses my buttons a bit,” Dr. Jassi says, adding that the condition is defined as a disorder because “it does have a distressing and interfering quality to it.”

Dr. Jassi stresses that OCD is “very treatable” and the symptoms are not always severe, but exist on a “spectrum,” with many patients able to get on with their daily lives even though they may struggle with some tasks. “But, sadly, sometimes it can be really devastating,” she says, telling me that lots of the young people under the service’s care are housebound as a result of severe worries about contamination or a need to carry out time-consuming rituals.

Liam started cognitive behavioral therapy (CBT) with exposure and response prevention (ERP) – a common treatment for OCD – in July 2021. Initially, this helped his condition to improve. “I wasn’t able to cuddle my son or kiss him because he feared contamination and after one of the sessions I was able to give him a cuddle and it was fantastic,” Michelle says.

However, Liam struggled to engage consistently with treatment. “He slowly went downhill as he found it quite hard,” Michelle says, adding that he sometimes missed appointments because he would be up for most of the night washing his hands and clothes.

Because his compulsions included restricting what he ingested, Liam had difficulties regularly taking his medication as he feared it was infected. He rapidly lost weight as he would go without food and water in “repeated cycles,” Michelle says. She tried to get Liam referred for specialist inpatient treatment, which was also recommended by his therapist, but was told that he did not meet the criteria for funding from NHS England.

This was because he did not meet the guidelines set by the National Institute for Health and Care Excellence, which describe a “stepped care” system, in which someone should be offered more intensive or specialized care after initial treatment is ineffective. As Liam had only completed one trial of CBT with ERP and had only tried one type of SSRI (a type of antidepressant), he was told that he would not be eligible for funding and, even if he was, the waiting list was “significant.”

In June 2022, Liam had his last therapy session, in which he shared that he had been feeling suicidal – not for the first time. “I think the next appointment he failed to keep, because Liam had been up all night washing his hands or showering and they decided to discharge him from the service.” Just under a year later, Liam took his own life.

A spokesperson for South West London and St George’s Mental Health NHS Trust, which was responsible for administering Liam’s care, said: “Our thoughts are with Liam’s mother, family and loved ones at this very distressing time. We have completed a thorough investigation and will be working closely with the coroner in the lead-up to the inquest. We remain available to the family as a source of support.”

London-based charity OCD Action shares Michelle’s concerns that people with severe symptoms of the condition are not getting the support they need. CEO Leigh Wallbank says that for some of the most unwell people with OCD, the quality of care they receive is determined by “potluck” as “there is no consistent model of monitoring.”

A recent survey by the charity Rethink Mental Illness suggests that this is not just the case with OCD: 35% of respondents in England said they were denied support from mental health services because their condition was considered “too severe.”

Ms. Wallbank argues that changing this is critical, especially as more and more people are approaching her charity for advice on OCD: they have seen a 51% rise in the number of young people contacting their helpline in the last six months, when compared to the same period last year.

“This is not just an oversight,” she says, but proof of the “institutional trivialisation of OCD.” “It puts pressure on those providing care and leaves people with OCD without the treatment they need.”

A coroner’s inquest into Liam’s death will take place in July and an NHS safeguarding review into his care will also be carried out. But Michelle says that structural change is still needed to ensure that people living with severe OCD get the support they need. She has started a petition calling for the expansion of the only 24-hour inpatient ward in the UK for people struggling with OCD and BDD (body dysmorphic disorder), which at the moment only has 14 beds.

“I think there’s currently about three quarters of a million people living with severe life-impacting OCD, just like Liam,” she says. “There’s a lot of people out there suffering that need help and the help isn’t there.”

If you or someone you know needs more information, help is available on the BBC Action Line.