"Healthcare system is in the dark about the scale of OCD" says UK leading OCD charity
By Jack Darlington
OCD Action say none of the main NHS planning organisations tasked with meeting the health needs of the population in the UK are systematically consistently collecting data on OCD, FOI data suggests.
The UK-leading OCD charity claims community mental health teams are not consistently collecting performance or outcome data on OCD-specific data in secondary care, meaning the absence of structured data collection creates a major gap in our understanding of how well these services meet the urgent needs of individuals suffering with severe OCD.
OCD Action claims the healthcare system is in the dark about the scale of OCD, the number of people with OCD, and say this is leading to a crisis in the healthcare system where nobody knows about the requirement of OCD treatment, with healthcare bodies not knowing how many people are in the system with the mental disorder, how many people are being treated and whether the treatment is effective or not.
CEO of OCD Action, Leigh Wallbank said: “We think that there is a huge lack of understanding with the NHS on the system of OCD.
“The lack of data means that people with OCD are sadly really being failed by the healthcare system at the moment.
“We are calling now on Keir Starmer to actively address this and change this system and the crisis that is being faced by people with OCD and the OCD community”.
One to two percent of the UK population are affected by OCD, which is up to one million people, with OCD sufferers telling the charity it’s not unusual for them to face waitlists of over two years for treatment.
Credit: Jack Darlington - Data from OCD Action
OCD is often triggered by a traumatic event and can cause an individual to make compulsive actions, have intrusive thoughts and take part in rituals due to the anxiety-based disorder taking harm, the OCD to alleviate their anxiety or create certainty.
The main objective of the charity is to support people affected by OCD to access treatment at the earliest possible point.
Wallbank said: “OCD is that it can be, and very often is, a deeply distressing illness that can really affect somebody’s life really seriously and lead to a lot of suffering, but it is treatable.
“Not accessing treatment for whatever reason that is, leads to unnecessary suffering.”
Leigh Wallbank, CEO of OCD Action
CEO of OCD Action: Leigh Wallbank Credit: Jack Darlington
CEO of OCD Action: Leigh Wallbank Credit: Jack Darlington
“The lack of data means people with OCD are sadly really being failed by the healthcare system.”
An NHS spokesperson said: “Between January and March 2025, 885 people accessed London NHS Talking Therapies services presenting with OCD symptoms.
"Of the people who finished treatment during this period, 82% were seen within 6 weeks, and 91% were seen within three months. The service offers CBT therapy which is the treatment recommended by clinical experts for obsessive-compulsive disorder.”
Societal stereotypes harm how OCD is treated, with the charity saying stereotypes unquestionably do harm and might delay people seeking treatment.
Wallbank said: “The reason why I think they do harm is because if somebody gets a really distressing intrusive thought and they think that OCD is about keeping neat and tidy, what do they think is happening to them when they get an intrusive thought?
“You know what people tell us is, I thought OCD was about keeping my kitchen clean, and when I got these intrusive thoughts, I thought maybe I was a really bad person and that I could never get any better.
“And so the harm that those tropes and stereotypes do is we think they might delay people seeking treatment, and the earlier you seek treatment, the better because OCD is treatable with the right treatment.
“So, the stereotypes, no individual person is ever meaning to do any harm by those throw away comments, but they do do harm, and that’s the sad thing."
OCD can be an incredibly distressing mental health disorder for people, but the disorder is treatable.
Talking therapy treatments are available such as CBT and ERP, cognitive behaviour therapy and exposure response prevention, alongside medication known as SSRIs.
CBT aims to change your thought processes by changing your behavioural responses to them, and can help challenge intrusive thoughts and compulsive actions.
ERP is said to be the gold standard part of therapy, where people take part in behavioural exercises in which OCD triggers are likely to occur, and the individual exposes themselves to something that triggers their OCD and is tasked to change the meaning of their OCD and their reactive behaviours to the disorder.
SSRIs are medications designed to make more serotonin available, working as a serotonin re-uptake inhibitor.
CEO of OCD Action: Leigh Wallbank Credit: Jack Darlington
CEO of OCD Action: Leigh Wallbank Credit: Jack Darlington
“We have a system that is in the dark about OCD and the number of people with OCD."
Secondly, the government is asked to recognise and count every person with OCD in the UK because every single person with the OCD in the UK counts, and a proper needs assessment is requested be undertaken across the NHS for people with OCD.
Thirdly, OCD Action are calling for a guarantee of timely access to clinically recommended treatments for OCD, for every single person with the mental illness.
The government has been approached for comment.
Talking to former OCD Action trustee, Aron Bennett
Former trustee of OCD Action: Aron Bennett Credit: Jack Darlington
Former trustee of OCD Action: Aron Bennett Credit: Jack Darlington
OCD Action is calling for data-driven access to treatment and a new specialist service for people with OCD to be delivered as soon as possible.
Former OCD Action Trustee, Aron Bennett says OCD isn’t taken as seriously as other mental illnesses, that mental illness shouldn't be trivialised, and that some people are mocked for their mental illness.
Bennett said: “I think that unlike some of the more well-known conditions like depression and some others, OCD hasn’t really been taken as seriously and I don’t blame the government entirely for that, I think it’s a cultural thing.
“But often it’s treated very comically, as if it’s something almost as a joke, and the butt of the joke is the person who is exhibiting OCD symptoms.
“It is as debilitating as physical illness can be.
“Mental illness shouldn’t be trivialised, it also isn’t a reflection of that person’s moral character, it is not everything about that person.
“OCD can manifest almost as extensively as the imagination permits, anything that you could be feasibly worried about, whether it be about being a bad person, being contaminated, dying.”
Lots of people who have OCD don’t mention it and never seek help.
In some cases, there is a long lag time for people’s symptoms starting to seeking help and can vary for people who don’t know they have the mental illness for up to ten years or more.
This leads to huge issues as it’s difficult for mental health specialists to know how extensive the problem is and how much of the population the disorder affects as so many people live with the mental disorder in silence.
The small charity supports people affected by OCD, running a helpline and over 50 support groups, supporting 5,000 people with information on a one to one basis, and 150,000 people accessing their information each year.
Those with OCD can have intrusive thoughts which can be about anything, but take mental relevance on things that matter the most to you.
Intrusive thoughts can occur to people who suffer with OCD and be distressing, but don’t indicate who OCD sufferers are as people, and the thoughts go against people’s values and who they are.
There’s reportedly no evidence of people ever acting on intrusive thoughts caused by OCD.
Many variations of the mental illness exist such as contamination OCD, checking OCD, causing intrusive thoughts and compulsions, but can come in incredibly distressing forms such as perinatal OCD, which affects women with newborn babies causing intrusive thoughts on harming their child, on being sexually attracted to their child, leading some victims of perinatal OCD to be afraid of getting help as they don’t want their child taken away.
Aron Bennett said: “The good news about OCD is it can be reversed, so it’s not something that even if you’ve had it for a long time, you couldn’t get better from.
“Good treatment is a lifeline for so many people.”
The charity has urged those suffering with OCD to look for support at the OCD Action website, and can attend support groups for people with various types of OCD, along with carers and parents of OCD.
People are also advised to speak to their GP to ask for NHS talking therapies, and self-referral options are also available to self-refer for treatment.
Other mental health charities are also available such as OCD-UK, Mind and TOP UK.
What does OCD feel like for someone who's never had it?
Talking to OCD Action Volunteer, Keets
OCD Action Volunteer: Keets Credit: Jack Darlington
OCD Action Volunteer: Keets Credit: Jack Darlington
How does OCD feel?
What do you know about OCD?
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