On average, it is up to 12 years before people with OCD seek help. This delay may be due to the shame people feel about their intrusive thoughts, lack of awareness of help options, or lack of confidence that treatment will help.
People have a choice of routes when first seeking help. Many will visit their GP, who should offer access to appropriate services and may prescribe anti-anxiety medication. Alternatively, in many areas, people can get direct access to proven talking therapies, such as CBT with exposure and response prevention, through an NHS scheme called Improving Access to Psychological Therapies (IAPT). Details of local services are available on NHS Choices and on the OCD UK IAPT database.
In England, mental health services are organised as ‘stepped’ care. This works on the principle of offering the least intensive, most cost effective treatment first, unless a person's symptoms warrant more intensive help from the outset. Each step adds progressively higher intensity treatments as needed, provided by more specialist mental health professionals. Usually, a person would have tried treatments at lower intensity steps before proceeding to higher intensity steps.
Some people may need more intensive services from the outset, due to the severity of their symptoms. This could be the case with OCD, where the condition could have worsened between first experiencing symptoms and seeking help. Other people may have another condition that complicates their OCD, for example, post traumatic stress disorder, depression, or personality disorders.
"All psychological interventions are now thought of as low and / or high intensity. Low intensity therapy might be low intensity because it takes less time, it’s less complicated, it’s delivered through the Internet, it may burden the patient less, so it may be about self help, and finally it might be delivered by people who don’t have extensive training."
Professor David Richards, Professor of Mental Health Services Research at the University of Exeter
For people who need more intensive help, their GP or local IAPT services may refer them to specialist psychological therapists. People who are severely unwell or not responding to treatment may be referred to a psychiatrist in a specialist clinic.
This overall approach is as recommended in NICE guidance, and within the national framework of IAPT. However, waiting times, ease of access and the nature of treatment can vary depending on local needs, levels of demand and the way local services are organised.
While most areas offer IAPT assessment within a month, there can be obstacles to getting access to more intensive mental health services, such as lack of suitable local services or long waiting times. Several OCD and general mental health charities offer support and advocacy for people who are experiencing difficulty accessing or using mental health services.
"Commissioners will be interested in how to meet high demand for mental health services in the most cost-effective way. Offering low-intensity services in this way could help to do just that.
"While there are some self-help options, most of those people (with OCD) get stepped up to a high intensity therapy. The problem for the services is that there’s often a wait between the initial low intensity and the high intensity and the balance of that can be wrong in some services. So it sounds great - you get a service within a month - but quite often that’s not the case for people with problems needing high intensity treatments."
Professor David Richards
The NIHR OCTET trial investigated whether low intensity supported self-help, in the form of books or online resources such as websites or apps, could make a difference for people while waiting for higher intensity treatment.
The trial compared three types of treatment:
Changes in OCD symptoms were compared after the 12 weeks of treatment, and also after a year. 473 people with OCD (mostly with severe symptoms) and 93 psychological wellbeing practitioners took part in the trial, at 15 locations in England between 2011 and 2015.
At three months and at one year after entering the trial, there was no significant difference in OCD symptoms for people who received the self-help interventions compared with those who remained on the waiting list.
However, fewer people went on to receive specialist treatment during the year, if they had received self-help with support; 57% of those who were guided to use the workbook, and 62% of those supported to use computerised CBT, compared with 86% of those who received no self-help while on the waiting list. Despite not receiving the more specialist help, these people were no worse off after a year, compared with those who did receive the specialist help. The researchers thought that participants may have gained a sense of support and progress from the low intensity support.