'My doctor mistook my OCD for paedophilia'
For Matt*, speaking out about his mental health problem had serious unintended consequences
Warning: This article contains descriptions of intrusive thoughts that you may find upsetting.
“They treat him like a paedophile. They treat him like the worst kind of abuser. This is how they see him”.
Paula* looks like she’s going to cry. It’s understandable, she’s helping her husband tell the story of his mental health crisis, and how trying to get help led to him losing his job and not being allowed to see his young son.
Last year, Matt* began struggling with what are known as “intrusive thoughts” - unwanted thoughts that appear in someone’s head without warning. At the time, he’d recently been through a difficult divorce with his son’s mum, and one of his close friends had become seriously ill.
When Matt was having sex with his new wife, thoughts of both random people and family members - including his son - started to pop into his head against his will. At first, he couldn’t understand why this was happening.
“A thought of my mother or my father or my sister would come into my mind and it was very upsetting,” he says, adding that these thoughts quickly became “overwhelming”.
Soon, Matt started to have other unwanted thoughts too. He was taking a course designed to boost self-confidence and was given the classic public speaking tip of imagining his audience naked.
Matt, who had a strict upbringing, didn’t feel comfortable doing this, and felt that it was wrong. But after that moment, thoughts of naked people started to appear in his head at other times too. He would ruminate on these thoughts and worry about why he was having them, and if they meant anything.
“The more I tried to bat it away, the more they would come,” he recalls. “It was almost like I had Tourette's, but internal-thoughts Tourette's.”
Intrusive thoughts are common (“What if I jumped onto the train tracks right now?” or “What if I stabbed someone with this kitchen knife?”) but, if you have Obsessive Compulsive Disorder (OCD), it isn’t easy to just dismiss meaningless thoughts and images as nonsense.
People with OCD may worry that their thoughts have meaning, and do things to guard against or counteract them (actions known as compulsions).
An OCD sufferer is not at risk of acting on their intrusive thoughts. In fact, these unwanted thoughts often focus on things that are deeply important to them, and are therefore incredibly distressing. Taboo sexual thoughts are a common symptom of OCD, explains Bruce Clark, a consultant adult and child psychiatrist.
“OCD doesn’t choose pleasant thoughts,” he adds. “I’m a dog lover - if I happened to have OCD, OCD wouldn’t place nice images of dogs in my head, it would go for very dark and unpleasant images - and that’s why sexual and violent themes I think are often a focus for OCD, because they are taboo and can create anxiety.”
The more Matt tried to fight his intrusive thoughts, the more anxious he became. He couldn’t sleep, he experienced a constant feeling of dread that he couldn’t shake, and rang the NHS mental health crisis line for help. Eventually, the advisor contacted his local mental health practice, and he went in but was told no one was available to see him.
After calling the crisis line again, he was referred to a psychiatrist. When he went to see the doctor, he says the questions he was asked felt less focused on understanding the cause of his thoughts and more about finding out whether he posed a risk to other people.
Following the appointment, his insomnia continued and Matt began to feel increasingly unwell. He had to call the crisis line again, and was told to take over-the-counter sleeping pills. After the call, Paula went out to buy some for him. When she returned 15 minutes later, she found that he had self-harmed.
Paramedics and four police officers arrived at their house. Though Matt was very distressed, he appeared outwardly calm and told both the police and a paramedic about his mental health crisis. He also explained that he’d been upset by a memory of having noticed a photo of his son in his room while he was watching porn, leaving him full of guilt about having accidentally seen his picture under those circumstances.
“I don't think [Matt] remembers much of what was going on,” Paula tells me. The police officers reassured Matt that he hadn’t done anything wrong but it seemed to her that he was “trying to find himself guilty of something.”
When Matt later repeated his anxieties to a mental health nurse, he was told a safeguarding referral would be made to social services. As a result, he was called during a day out with Paula and his son two days later, and told to return the child to his ex-wife’s home immediately.
“His son to him is the most precious person in the world, and it’s really upsetting,” says Paula, her voice cracking with emotion. “Intrusive thoughts, they’ve got a way of getting to the thing that is dearest to you.”
Matt’s job involves working with children and, later that week, he got a letter from his employer telling him he was being suspended pending an investigation, triggered by the referral.
A month later, he was informed that he wouldn’t be allowed any further contact with his son and, if he wanted to fight that decision, he would need to go to court.
Paula explains to me they were told by the authorities that Matt’s doctors would have to decide whether he was “likely to act” on his thoughts. “People with intrusive thoughts, they’re not a risk,” she adds.
There has never been a recorded case of a person with OCD acting on their intrusive thoughts, according to Professor David Veale, a consultant psychiatrist regarded as the UK’s leading specialist in OCD.
“Intrusive thoughts or images are perfectly normal,” he tells me. “The problem in OCD is they are infused with enormous shame and anxiety. The person believes that somehow they shouldn’t have them, that it’s immoral, that they could act upon them.”
David Christmas, another consultant psychiatrist, agrees. “In the case of OCD, most experienced clinicians would say there is no risk because people [with OCD] simply do not act on these thoughts,” he says. “So someone who has thoughts about causing harm to other people, or of being a paedophile, for example, which is a relatively common obsession - they simply do not represent a risk to other people.”
If those with OCD pose no risk to others, why are safeguarding referrals made?
Professor Veale says that when these referrals are made about people with OCD, it is sometimes by professionals who lack specialist mental health knowledge.
“Often people are just referring to be ‘on the safe side’ because they don’t really understand it - so it’s very much a defensive mechanism,” he says. “They should be referred to specialists in OCD who do understand it and can provide reassurance to other professionals.”
When the stakes can feel so high to someone caring for a patient who describes taboo sexual thoughts, how can a doctor decide whether a person’s thoughts are part of a mental illness or a sign of danger?
A psychological assessment should make it simple to differentiate between intrusive thoughts and someone “having preoccupations about wanting to really cause harm to someone,” says Dr Christmas, who suggests that many unnecessary safeguarding referrals could be prevented if GPs had more ready access to specialist second opinions. “It’s possible that where people are left in a position of uncertainty, they may follow procedures rather than wait until they’ve got enough information to work out whether or not this is actually OCD.”
“I wouldn’t want to counsel people to say that if you have a worry about safeguarding that you shouldn’t refer to social care. Social care are a professional agency and their job is to assess risk,” adds Dr Clark. “Social services and good quality social workers can do good quality assessments.”
National Institute for Health and Care Excellence (NICE) guidelines state that if medics are unsure about whether someone describing sexual or violent intrusive thoughts poses a risk, they “should consult mental health professionals with specific expertise in the assessment and management of OCD”, adding that these kinds of thoughts “are often misinterpreted as indicating risk.”
More than six months after his referral, Matt still hasn’t been able to return to his job, and has had to find alternative employment. He tells me another psychiatrist from his mental health practice produced a report saying he was “low risk”, but didn’t wish to have further involvement with the appeal he is making to his employer. He has subsequently been seeing an OCD specialist, who is happy to advocate for him and has declared him “no risk” to other people - but the appeal to his former bosses is proving to be a long and difficult process. He hasn’t had contact with his son for more than six months, and is on an NHS waiting list for further treatment.
When contacted by BBC Three, an NHS spokesperson said in a statement: “In common with other professionals in public services, NHS staff have a legal duty to report safeguarding concerns through the appropriate channels, and receive regular training to ensure they know when and how to do so.”
But Matt’s story isn’t unique. In 2016, the Parliamentary and Health Service Ombudsman upheld a complaint from mental health charity OCD-UK about a similar case.
The patient had accessed OCD treatment through an NHS service after experiencing intrusive sexual thoughts about children and having sex with strangers. Records showed that the patient explained that the thoughts were unwanted and distressing, and that he had no intention to act on them. A consequent safeguarding referral resulted in the patient (who worked with children) being suspended from work.
The ombudsman concluded that there were “failings” in the treatment of this patient and recommended the local NHS Trust produce an action plan to reduce the likelihood of this happening again.
BBC Three is also aware of other similar cases. Even though taboo sexual intrusive thoughts were interfering with his day-to-day life, Jack*, 34, was apprehensive about seeking help.
“You’ll have days where you just can’t think about anything else, it’s just like a tumble dryer, everything is going round and round and round,” he tells me. “It’s impossible to lead a normal life, to interact with people normally when you’ve got this going on at the same time, to focus on work.”
He was also struggling with depression and, during a GP appointment last year, mentioned his intrusive thoughts in passing, without giving any specific details.
After several more GP appointments, he was referred to a psychiatrist. Knowing that he was seeing a mental health specialist, Jack was more ready to talk about the effect his unwanted taboo thoughts were having on him. But, when he got to the appointment, the approach by his psychiatrist and psychiatric nurse wasn’t what he’d expected.
“I found the line of questioning was less about me and my wellbeing and more about fishing for details,” he recalls, adding that he had previously been feeling positive about seeing someone who had a knowledge of OCD. “I felt awful when I left. Really awful. You shouldn’t feel worse when you come out of somewhere like that.”
Jack was so distressed after the appointment that his wife phoned the practice to make a complaint. During the call, she was told that the psychiatric nurse who’d been present had made a safeguarding referral to social services. Jack believes this is because he wouldn’t disclose the full specifics of his unwanted thoughts. “Every other medical and mental health professional that I’ve spoken to has agreed that you don’t need to know all the specific gory details,” he says.
In Professor Veale’s experience, when a safeguarding referral is made about someone with OCD thoughts, it makes their condition “much worse”. “It increases their doubts,” he says, explaining that someone might be left thinking: “Maybe there really is a problem, maybe I am a paedophile.”
“After having been gradually building trust with professionals it’s been just completely annihilated in one appointment,” says Jack. “This kind of situation is going to be a barrier to people who need help.”
A spokesperson for mental health charity OCD Action told BBC Three that the organisation is seeing an increasing number of people who have been misinterpreted as a potential risk after disclosing distressing intrusive thoughts.
The charity says cases like these “can cause huge amounts of distress and anxiety for the individual with OCD and often result in the loss of employment, break-ups of families and relationships and, in some cases, suicide.'' Where possible, the charity advocates for OCD sufferers in these situations, and does outreach work with the police, MPs and social workers to help improve understanding.
Subsequently, Jack ended up paying to see a private psychologist for treatment. “I’m feeling quite good about things at the moment, and that really is only because I just gave up on the NHS mental health service and went private,” he tells me.
Jack, his wife and their two children were eventually interviewed by social care professionals and, four months after our first conversation, he was told that his case would be closed, as no further action was required. He’s now back at work, and feeling hopeful that he might soon be able to put the year’s events behind him.
If you have been affected by any of the issues raised in this article, information about help and support is available here.
*Names and some details about people mentioned in this article have been changed