Mental health services are failing thousands of Britons who suffer with life-destroying obsessive compulsive disorder (OCD) because of inappropriate or inadequate treatments, experts have warned.
Psychiatrists and campaigners have told The Mail on Sunday that far too many OCD patients are denied the gold-standard therapy proved to help stop their disturbing intrusive thoughts and the blight of compulsive behaviours.
They have blamed a dearth of NHS specialists and a ‘worrying lack of understanding’ about the condition among clinicians.
The Mail on Sunday has learnt of patients who have waited years for a diagnosis after being misdiagnosed with other mental health conditions.
These include a woman was told she had psychosis and was prescribed powerful sedatives while her symptoms spiralled. Another severely unwell woman was discharged from NHS care as staff were unable to cope with her irrational fear of hospitals. And a young man was prescribed sleeping pills when he asked his local mental health crisis team for help.
Without the right treatment, OCD can have devastating consequences. The condition affects up to one million Britons and is characterised by unwanted, intrusive thoughts, often about taboo topics such as death and sex, that repeatedly enter the sufferer’s mind and cause extreme anxiety.
When Beth Fletcher-Hall, from Shropshire, first sought help for OCD symptoms in March 2018, doctors failed to spot the condition. Pictured with her son, six
Over time, the majority of patients develop compulsions they believe will quell the thoughts. Sometimes these take the form of repetitive behaviours, such as checking a door is locked, hand-washing or avoiding stepping on cracks in the pavement.
The symptoms can become so overwhelming or time-consuming that sufferers may become unable to work or leave the house. Up to a quarter of people with the condition attempt suicide.
‘When I’m saying people with OCD are dying due to a lack of services, I’m not being melodramatic,’ says Dr Lynne Drummond, honorary consultant psychiatrist at South West London and St George’s Mental Health NHS Trust and one of the country’s leading experts on OCD. ‘Misconceptions about the condition means that people can be reluctant to seek help and, when they do, healthcare professionals often don’t know what to do with them.
‘GPs, and even some therapists, often don’t fully understand the condition and may misdiagnose someone with anxiety or even dismiss them.
‘OCD is too often treated like a joke. People think they’re “a bit OCD” because they are very organised or tidy. But that’s not OCD.’
People think they’re “a bit OCD” because they are very organised or tidy. But that’s not OCD.
The warnings come as cases of OCD have soared to record highs, according to NHS data. The charity Triumph Over Phobia UK, which offers OCD advice and support, has seen helpline enquiries double since March 2020, with more people in crisis than ever before. Experts still don’t fully understand what causes the problem, but studies suggest that it is linked to a genetic predisposition or can be triggered by a traumatic event, and the pandemic may have been a significant factor.
A widespread misconception that OCD must involve behaviour such as obsessive cleanliness is preventing patients from accessing the right treatment, experts say.
When Beth Fletcher-Hall, from Shropshire, first sought help for OCD symptoms in March 2018, doctors failed to spot the condition. Then a nursing student, Beth found herself unable to stop sending her tutor emails due to crippling self-consciousness.
‘When I didn’t get a reply, I was so worried I’d struck the wrong tone that I sent another email to apologise for the first one,’ says Beth, now 36. ‘Then for months I worried endlessly about the emails, I constantly rewrote them in my head, and ended up sending about a dozen a day. I constantly felt like I had done something really, really bad.’
The Mail on Sunday has learnt of patients who have waited years for a diagnosis after being misdiagnosed with other mental health conditions (stock image)
Having read about OCD, in April 2019 she asked her GP if she might have the condition. ‘She said it was just anxiety and gave me the highest dose of anti-anxiety drugs. But they made my feelings of panic ten times worse.’
The next month Beth reached crisis point. She says: ‘I felt as if I’d been trapped inside my head for a year, and I’d started booking weekends away for myself so I could just sit and think – which made me worse.
‘One day I was on my phone, compulsively Googling and sending 11 emails in the space of a minute. I realised that I’d lost control and was consumed with anxiety. I went to the GP to beg for help. I wasn’t making much sense so she referred me straight to the local mental health crisis team.’
At the NHS centre, where Beth was admitted, a psychiatrist diagnosed her with psychosis. She was prescribed anti-psychotic drugs – which had no effect on her symptoms but made her feel very drowsy. A short course of psychotherapy was offered, of a type not recommended for OCD, which unsurprisingly failed to help.
‘I felt so alone, like nobody was taking what I was saying seriously,’ she adds.
After a week, Beth was discharged from the crisis centre but she was still too unwell to continue her nursing course.
She tried to broach the subject of OCD again with her psychiatrist. ‘If you’re not avoiding cracks in the pavement, it won’t be OCD,’ was the offhand response.
Her GP, meanwhile, suggested that she had depression.
Finally, in October 2021 and more than three years after her symptoms began, Beth was referred to a mental health practitioner based at her GP practice, who ‘asked the right questions’ about her symptoms, and diagnosed her with OCD.
‘She saw in my notes that I had been referred for a serious mental health review, yet I hadn’t had treatment for a year, which concerned her,’ she says.
The warnings come as cases of OCD have soared to record highs, according to NHS data (stock image)
Beth was prescribed the antidepressant fluoxetine, which helps keep OCD symptoms under control. Yet a year later, she is still on the waiting list for appropriate psychotherapy.
According to the National Institute for Health and Care Excellence (NICE), the best treatment for OCD is a combination of two treatments: cognitive behavioural therapy, also known as CBT, which helps patients to identify the thoughts that trigger their compulsions, combined with an approach called exposure and response prevention, or ERP.
The latter involves exposing patients to situations that might trigger anxious thoughts which they tend to avoid. Some may be supported to gradually halt their compulsions by replacing them with other, healthier coping tools such as deep breathing.
What is obsessive compulsive disorder?
Obsessive compulsive disorder, usually known as OCD, is a common mental health condition which makes people obsess over thoughts and develop behaviour they struggle to control.
It can affect anyone at any age but normally develops during young adulthood.
It can cause people to have repetitive unwanted or unpleasant thoughts.
People may also develop compulsive behaviour – a physical action or something mental – which they do over and over to try to relieve the obsessive thoughts.
The condition can be controlled and treatment usually involves psychological therapy or medication.
It is not known why OCD occurs but risk factors include a family history of the condition, certain differences in brain chemicals, or big life events like childbirth or bereavement.
People who are naturally tidy, methodical or anxious are also more likely to develop it.
The combination of these two therapies improves symptoms for roughly three-quarters of patients, research shows.
High doses of antidepressant medication can also help, but Dr Drummond says that ‘far too many patients’ are not offered this full package.
The main problem relates to the way many NHS patients access psychological therapy.
In 2008, NHS England introduced the Improving Access to Psychological Therapies scheme: a service which provides talking therapies to people who have mild to moderate mental health conditions.
The aim was to speed up access to care, and it has been considered a success when it comes to helping people with better-known conditions such as anxiety and depression.
However, the service is failing when it comes to OCD patients, says Ashley Fulwood, chief executive of the charity OCD-UK.
He adds: ‘Often people with OCD will be referred to a generic CBT therapist who misunderstands the condition.’
Many patients are limited to only six or eight sessions of CBT, despite the guidelines recommending up to ten, the charity has found. Frequently, people with OCD are told they can’t have more or must get a new referral and start back at the bottom of the waiting list. Others get no treatment because they’re told by IAPT assessors their problems aren’t bad enough.
Fulwood himself has struggled with the condition for more than 20 years. Although his condition is largely under control thanks to treatment, he is occasionally overcome with one compulsion.
He says: ‘Every month or so I end up in the bathroom, scrubbing away with bleach for two hours. I emerge coughing and wheezing every time. It’s horrible.
‘But because it doesn’t happen every day, they’ve said it’s not serious enough for treatment.’
Others are told by IAPT assessors that their condition is ‘too severe or complex’ to qualify for therapy and are advised to contact local mental health teams that are based in hospitals, says Dr Drummond.
But in many areas this service deals only with specific conditions, like psychosis. And while there are six specialist OCD centres in the UK, patients qualify for NHS England funding to attend only if they have failed to respond to at least two other psychological treatments and three medications.
‘It’s usually reserved for people who also have developed physical problems as a result of going untreated – like kidney problems because they’re too scared of contamination to drink water,’ says Dr Drummond, the author of Everything You Need To Know About OCD.
‘Even then, the waiting list is usually six months. The system means that many end up with either inappropriate or inadequate treatment.’
Triumph Over Phobia UK helps about 500 people every year who are unable to get the support they need on the NHS. The charity provides online sessions, costing between nothing and £40 depending on income.
‘Without services like ours, hundreds of people would spiral into mental health crises,’ says its clinical director, Trilby Breckman.
In a statement to this newspaper, NHS England said improvements in services were on the horizon. The Government has invested £900 million in a community mental health transformation programme and plans to recruit thousands of new staff.
It says more than half of GP surgery networks now have in-house mental health practitioners to support people with complex mental health needs.
But this is little comfort to Beth. Although now stable on medication and successfully qualified as a mental health nurse, she feels she unnecessarily lost three years of her life to the condition. ‘If someone had said at the very beginning “This seems like OCD, this is what you can do about it”, it would have saved so much trauma for me and my family,’ she says.
‘It is so important that people understand what it is and that it becomes easier to access treatment. I don’t want anyone else to go through what we went through.’