Obsessive compulsive disorder (OCD) is a common mental health condition where everyday life is disrupted by intrusive thoughts and often repetitive rituals to cope with them, such as excessive hand washing or checking whether doors are locked. This makes it difficult to lead a normal life and is costly to the sufferer and wider society, in terms of lost employment and life opportunities, impact on family, and support and welfare costs.
Medication and psychological treatments can work for relieving symptoms. However, high demand and limited resources mean there can be a wait to receive specialist help. New NIHR research shows promise for using self-help materials combined with modest levels of support from mental health practitioners, while patients wait for more intensive treatment.
1-3% of the population affected by OCD
12 years average time until people seek and receive treatment for OCD, during which the condition often gets worse
Top ten in the World Health Organisation (WHO) ranking of the most disabling illnesses of any kind, in terms of lost earnings and reduced quality of life
Evidence at a glance on Obsessive Compulsive Disorder
NIHR has funded two major studies on OCD treatment. The first, a review of medical and psychological / behavioural treatments, explored which might work best for young people or adults. The second was a large trial involving self-help with support, called OCTET (Obsessive Compulsive Treatment Efficacy Trial). It looked at whether using self-help materials with some support could help while waiting for more intensive treatment with a therapist. Both studies add to what is already known about effectiveness, cost and acceptability of treatments.
This Highlight considers some of the key points arising from the studies, but it is not a complete review of all the evidence in this area.
Which treatments work best according to this research?
Overall, psychological and drug treatments were similar in cost effectiveness. Looking across different trials, the most effective psychological / behavioural treatments seemed to work better than drug treatments but were more expensive.
There were some limitations to the research which mean we cannot be absolutely certain of the findings. For instance, some participants in psychological trials may have continued to take existing drug treatments. However, this is the best research available at the moment.
Psychological / behavioural treatments
In the NIHR review of treatment trials, all of the following psychological / behavioural treatment options worked better than not receiving active treatment:
- Behavioural therapy - exposure and response prevention, meaning a person is taught to progressively face their fears without carrying out their compulsive rituals.
- Cognitive behavioural therapy (CBT) - changing how you think and behave.
- Cognitive therapy - changing your reaction to intrusive thoughts and correcting unhelpful beliefs, like constant self-blame.
- The review included trials of drugs which affect the neurotransmitter serotonin. Drugs which boost low serotonin levels (such as SSRIs and the tricyclic antidepressant clomipramine) were previously thought to help treat OCD. All the drugs investigated (except venlafaxine and hypericum) worked better than no drug treatment for relieving symptoms of OCD.
- Most evidence was found on antidepressant drugs, including fluvoxamine, fluoxetine, sertraline, and clomipramine.
- Although effective, clomipramine seemed to have worse side effects than the other drugs, which may limit its use in practice.
Psychological compared with medical treatments
Overall, in the review the differences between effectiveness of psychological and drug treatments were small.
- For adults, behavioural therapy and cognitive therapy were more effective than medication. Combinations of drugs with psychotherapy were the next most effective treatments, followed by CBT with sertraline. However, psychological treatments were more expensive than drug treatments.
- For children, CBT and behavioural therapy worked better than medication, but CBT combined with sertraline was also effective.
- It was difficult to compare these treatments because patients on psychological treatments were also taking medications in most instances.
Combinations of treatments
- Taking medication plus receiving psychological therapy seemed to be among the most effective treatments. Combined approaches are recognised in practice as helpful for some people with OCD, generally those with more severe symptoms. However, there wasn’t much evidence on receiving two types of treatment at the same time, compared with the amount of evidence on single treatments.
- The review did not look at the effect of changing from one type of treatment to another.
- An NHS pilot trial, Optimal Treatment for OCD (OTO), is currently looking at CBT or treatment with sertraline, compared with combining CBT and taking sertraline.
Supported self-help treatments
- The OCTET trial found that guided self-help with a workbook or supported self-help with an online CBT programme made no significant improvement to people’s symptoms compared with simply being on a waiting list.
- However, by a year later fewer people had gone on to CBT treatment with a therapist if they had used self-help with support first.
What does research say about cost effectiveness?
- In general, the most effective treatments (psychological / behavioural) tended to cost more than drug treatments. So, overall, there wasn’t much to choose between the cost effectiveness of all treatments - more expensive treatments tended to work better whereas cheaper treatments didn’t work as well.
- The supported self-help treatments were more cost-effective than being on a waiting list for specialist therapy without supported self-help, because people who had received supported self-help were less likely to go on to receive specialist therapy.
Key questions for patients
- What are my treatment options?
- How long are waiting lists for treatment?
- What are the side effects of medication, when might they start, and when will my symptoms start to improve?
- What will I need to do to get the best out of psychological treatment?
- Will a therapist work with me to achieve a level of exposure and response prevention that works but isn’t too overwhelming for me?
- Will it help if I take medication as well as having psychological treatment?
- What else is available locally, or online, in terms of support or other treatment?
Key questions for health professionals
- Am I clear on OCD guideline recommendations, referral criteria and service options?
- Do I understand the importance of shared goals with the person undergoing Exposure Response Prevention treatment?
- Are there local outreach or support services that help make services accessible?
- How long are local waiting lists for specialist therapy?
- Is low intensity supported self-help available for people with OCD in the meantime?
Key questions for commissioners
- How many people in my area, and who, find it hard to access and engage with services? (for example, people in a multi-ethnic community, people with particular social or health problems, those living in need or experiencing deprivation)
- Can we learn from successful outreach initiatives in other areas?
- How do waiting times for psychological treatment and recovery rates for my area compare with other areas, as shown in the NHS Digital IAPT data set?
Access to treatment and help for people with OCD
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.
A stepped approach
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.
Self-help as an interim measure?
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:
- Remaining on the waiting list for CBT with a therapist - the usual treatment for people with moderate to severe symptoms of OCD
- Guided self-help to use an exposure response prevention workbook called Overcoming OCD, with support from a mental health professional by phone or face to face (1 hour session initially, followed by ten 30 minute phone calls)
- Supported self-help to use a computerised CBT programme called OCFighter™ (recommended at least six times over 12 weeks), with limited support from a mental health professional by phone (six 10 minute phone calls)
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.
What OCD support groups are available in the UK?
There are several charities which offer help and support to people with OCD, such as OCD UK and OCD Action. Their activities include giving advice and information, helping people to access services and advocacy. They also campaign on many issues affecting those with OCD, for example breaking down stigma.
Support groups are available in some areas. While these can be helpful, they may not be suitable for everybody, for example people with OCD and trauma, who may have more complex needs that require individual support. Other issues preventing attendance include timing and proximity of meetings. Support through social media may be more convenient and acceptable to some people, for example Triumph Over Phobia offers support via Skype.
OCD UK is a charity which is run by people living with OCD. Chief Executive Ashley Fulwood talks about the help and empowerment that the charity can provide.
OCD UK ran the 'Little Bit OCD' campaign to raise public awareness and reduce stigma. Ashley Fulwood explains:
"We organised ‘Little bit OCD’ as an awareness campaign to challenge people’s perceptions of OCD. The media often represent OCD as a trivial condition, which is frustrating, upsetting and leads to misconceptions. We recruited people with experience of OCD to get involved, we trained them and gave them support, and organised public events where we created a sofa zone (e.g. at carnivals). We chatted to people and explained to them about what OCD was really like. Most people were prepared to listen and said their perception of OCD had changed.
"It was a great experience for our service users, giving them more confidence to talk about their OCD. It’s a great model of how people should be reacting to inappropriate comments. A lot of people react with anger at misrepresentation in social media, but you don’t educate by shouting at them."
Lynne Drummond, Consultant psychiatrist, reinforces how important it is to take OCD seriously:
"A lot of people say ‘I’m a bit OCD’ meaning they’re meticulous or tidy or fussy about their clothes. That’s not OCD. OCD is a distressing disorder, where at its very, very worst it can actually threaten your life as people will restrict their food, their fluid, restrict their lives in a whole range of ways. So it’s not a joke and it’s not something that people can snap out of."
OCD UK offers support groups facilitated by people with OCD.
"In the past, we’ve experienced groups that can be negative – where the group becomes talking about how bad your OCD is – this can be cathartic, but not helpful," says Ashley Fulwood.
"Our groups are positive, and focus on cure. We very much encourage people to talk not just about how they’re feeling, but what they can do to challenge their OCD. It’s a model that works – some people pick up on it quite quickly, but other people may need to come several times. People report that they were able to challenge their OCD. That type of support group isn’t self-help. We don’t set challenges, we just facilitate them."
Triumph over phobia
Triumph Over Phobia (TOP UK) is a charity that aims to help people suffering with phobias, OCD and related anxiety. As well as support groups, it offers telephone support for people using Living Life to the Full, which is a programme of online self-help materials produced by a separate organisation. This kind of support is like the supported self-help part of the OCTET trial. Trilby Breckman, Development Manager for Triumph Over Phobia, describes the support:
"If Living Life to the Full users want to speak to someone, they can get in touch with TOP UK. We can arrange to support them by email or telephone as they travel through the different chapters – which might take 6-10 weeks to complete. We offer them a bit more explanation on how to use the materials. Not everyone is happy to work by themselves. Also, if there is someone to help you, it can help to keep you motivated through the course."
Which OCD treatments work best?
A large NIHR-funded review gathered evidence from trials to compare a wide range of medical and psychological treatments, delivered over a time period between 12 weeks and five years. The review used an approach called network meta-analysis to make new comparisons beyond what was directly researched in individual trials.
Medical and psychological treatments showed similar ability to reduce OCD symptoms. Some specific treatments seemed to have higher dropout rates. The review didn’t investigate why, but this may be because of negative experiences like drug side effects. For example, adults taking the drug clomipramine were more likely to drop out of the studies.
In practice, the stepped care approach as recommended in NICE guidance means psychological treatments tend to be offered first to people who have mild to moderate symptoms of OCD, while medication may be offered to those who have moderate to severe symptoms.
If one drug or approach doesn’t work, often another is suggested, or a combination of medical and psychological treatments.The review was unable to compare detailed characteristics of the exact treatments, such as amount of therapist contact offered with each treatment.
A large NIHR-funded trial of different intensities of psychological treatment looked at interim self-help for people who mostly had severe symptoms, while on a waiting list for CBT with a therapist. Those who used a workbook or computerised self-help materials with support, were less likely to go on to use more intensive CBT from a therapist, compared with those who did not receive supported self-help.
Cost implications of different OCD treatments
The research showed that psychological and drug treatments had similar cost effectiveness, and that self-help with low intensity support was more cost-effective than simply being on a waiting list for more intensive psychological treatment.
However, upfront cost and limited availability of more specialist therapists - which provide the most effective treatments - could restrict who is able to use them. Government investment in the Improving Access to Psychological Therapies programme has improved access to psychological treatments since 2008. Despite this investment, demand in some areas may mean that some people with OCD are unable to receive timely, effective help.
What does the research mean for patients?
The evidence from the review shows that patient preferences may be the best guide to which treatment to choose, whether that is psychological treatment, drug treatment, both at different times, or both together. One of the mainstays of evidence based practice is CBT with exposure response prevention - a graded way to face fears and reduce anxiety. Some people find this daunting, but the treatment is very effective. Ashley Fulwood, CEO of OCD UK, emphasises that the therapist and person with OCD must work together to help achieve a successful outcome.
What I’ve learned from other people and listening to OCD specialists, some therapists will set exposure exercises for patients at a level which is far too severe for the person at that time. The person ends up feeling that therapy won’t work. Whereas a specialist will make it a collaborative therapy - they will encourage the patient to set their own challenges. Or perhaps the therapist will set the challenge for them but work with them to achieve it. Therapy should always be collaborative.
Ashley Fulwood, CEO of OCD UK
Christine Molloy, a Psychological Wellbeing Practitioner from the University of Manchester, confirms this. She says:
A person’s goals should decide how you’re going to proceed with the therapy. It’s important that the Exposure Response Prevention therapy is organised in such a way that is manageable for the patient so that they’re going to achieve success early on...I would say to people, if a step feels too difficult, you’ve not failed, what we need to do is break that step down so that it is more manageable. Some anxiety is to be expected with ERP; the aim is to stay with the anxiety until it subsides, with repeated exposure this will improve.
In practice, some people may find that it is difficult to get a timely referral to psychological treatment, or there may be waiting lists for specialist treatment.
After more evaluation, supported self-help (as studied in the OCTET trial) could give commissioners and referrers a cost-effective opportunity to help people, even while they are on a waiting list for specialist treatment.
About the research on OCD support and treatment
What is the research that this Highlight is based on?
This Highlight is based on findings from the following two NIHR-funded studies:
- Skapinakis P, Caldwell D, Hollingworth W, et al. A systematic review of the clinical effectiveness and cost-effectiveness of pharmacological and psychological interventions for the management of obsessive-compulsive disorder in children/adolescents and adults. Health Technol Assess. 2016;20(43).
This large systematic review combined the findings of 86 randomised controlled trials on psychological and drug treatments for OCD in adults and children / adolescents. Through a technique known as network meta-analysis, the reviewers compared the effectiveness of psychological and drug treatments between different trials.
- Lovell K, Bower P, Gellatly J et al. Low-intensity cognitive-behaviour therapy interventions for obsessive compulsive disorder compared to waiting list for therapist-led cognitive-behaviour therapy: 3-arm randomised controlled trial of clinical effectiveness. PLoS Medicine.
2017 June 27;14(6):e1002337.
- Lovell K, Bower P, Gellatly J, Byford S, Bee P, McMillan D, et al. Clinical effectiveness, cost-effectiveness and acceptability of low-intensity interventions in the management of obsessive compulsive disorder: the Obsessive Compulsive Treatment Efficacy randomised controlled Trial (OCTET). Health Technol Assess.2017;21(37).
This NIHR trial (OCTET) is the largest trial to study the effectiveness of self-help in OCD. It investigated whether low-intensity (cheaper) treatments can help while people are waiting for high-intensity (more costly) treatment. We selected these studies because they are relatively recent, high quality and fall within the specific area of OCD.
There are other NIHR studies that have some relevance to the topic – you can find out more at the NIHR Journals Library website. Other NHS research includes the OTO trial: Optimal treatment for OCD which is comparing cognitive behavioural therapy (CBT) and selective serotonin reuptake inhibitors (SSRI) and their combination to treat OCD.
How strong is the research evidence in this area?
Systematic reviews of trials are a reliable way to compare how a range of different types of treatment work. However, the findings depend on the quality of the underlying trials. In this review, the trials did not provide enough evidence on the most effective treatments for different types of people with different levels of impairment from OCD. A major limitation of the evidence for psychological treatments was that many patients were already taking long term medication for their OCD. Drug trials were more likely to be large and sponsored by pharmaceutical companies, whereas psychological treatment studies tended to be smaller and have participants who were also taking medication. This makes it more difficult to compare treatments in an unbiased way, however it is the best research available at present.
OCTET was a large, well-designed, randomised controlled trial. This is the most reliable type of research to compare directly how well two or three different treatments work. It was the largest trial comparing self-help treatments for OCD, and is thought to be the largest trial ever of psychological treatments for OCD. OCTET was carried out in England, so is very applicable to the NHS.
How does this fit with current guidance?
NICE carried out an extensive review of the available evidence on OCD treatment when the most up to date guidance was written in 2005.
This guidance recommends different levels of treatment, starting with the least intensive treatment of guided self-help. If this does not work or a person prefers a different treatment, or is more severely impaired when first seen, they may be referred to more specialist treatment, such as psychotherapy from a qualified psychologist. Medical treatment with antidepressants may also be offered to those with moderate to severe symptoms of OCD. Both pieces of research broadly match the NICE guidance recommendations.
More recently (2014), the British Association for Psychopharmacology has updated the evidence, and the Royal College of Psychiatry has published help on treatment options.
Baldwin DS, Anderson IM, Nutt DJ, et al. Evidence-based pharmacological treatment of anxiety disorders, post-traumatic stress disorder and obsessive-compulsive disorder: a revision of the 2005 guidelines from the British Association for Psychopharmacology. Journal of Psychopharmacology. 2014 May 1;28(5):403-39.
NICE. Obsessive-compulsive disorder and body dysmorphic disorder: treatment. CG31. London: National Institute for Health and Care Excellence; 2005.
RCPsyc. Obsessive-compulsive disorder. London: Royal College of Psychiatrists; 2014.
Further resources on OCD
Disclaimer: This report by the NIHR Dissemination Centre presents a synthesis of independent research. The views and opinions expressed by the authors of this publication are those of the authors and do not necessarily reflect those of the NHS or the Department of Health. Where blogs, sound recordings and verbatim quotations are included in this publication the views and opinions expressed are those of the named individuals and do not necessarily reflect those of the authors, the NHS, the NIHR or the Department of Health.
Living with OCD - a patient's perspective
As a person who has been living with OCD for most of my life, I am passionate about helping people with OCD get better access to appropriate help. I was a member of the OCTET trial steering committee, where I was able to contribute the patient perspective. In future, I would like to work with OCD charities by sharing my own story and experience, to raise awareness and dispel the myths.
I became unwell with OCD when I was four to five years old, but wasn’t diagnosed until the age of 11, in the first year of secondary school. My worsening condition resulted in absence from school for about four years - it was an isolating time. Meanwhile, more recently in my adulthood, I have frequently experienced episodes of crisis, often triggered by work situations, stress and the pressure of living in the real world. The latter may sound simple, but having spent so much time ‘living in my head’ being in the here and now is more difficult than it sounds. The fluctuating nature of OCD, or highs and lows, feels like life is spent ‘riding the waves of anxiety’ on a daily basis.
My parents’ persistence and a good GP helped me to gain access to young people’s mental health services. I received intensive, ongoing telephone cognitive behavioural therapy support via the Maudsley hospital in London. At times, I had inpatient treatment from local mental health services. Overall, young people’s services gave me a wider range of treatment and more support than after the transition to adult services.
Treatment for adults
As an adult, I have found getting access to help seems to be more about luck and having a good GP. I have paid for some help as an adult, including counselling and complementary therapies such as acupuncture. Waiting lists are far too long – I may have been lucky in gaining quicker access, due to having depression leading to suicidal thoughts.
The typical wait is in two parts:
- between seeing the GP until seeing a member of the community mental health team (for specialist assessment) – two days to three weeks
- between being assessed and starting CBT treatment – 6-12 weeks
At one point, a GP (not my usual one) suggested lifestyle modification, when what I needed was immediate referral. As a result, I was acutely ill by 2 months later. Even when I was in crisis, the wait from seeing a GP to seeing a mental health specialist was from Thursday to Monday.
In the past, while I was waiting for treatment, specialists suggested various self-help resources to use in the meantime, such as Overcoming OCD by David Veale and Rob Wilson, and websites such as those of the OCD charities. Face to face support groups might be helpful, but in practice, there aren’t any near to me (for example, two hours away) so they wouldn’t be convenient. I have found online support groups easier to use. I have just become involved in a CBT group – the first in my area.
Overall, I’ve found that medication has been very helpful, particularly in the early stages of treatment. It can take a few days or weeks to work, until there is a noticeable improvement in mood and symptoms. Medication seems to work well with talking therapy.
The GP has often started medication or increased doses when I’ve visited for worsening of symptoms. I’ve taken some of the types of medication for years. I think it’s good to come off them at some stage, which I have done in the past, with a specialist’s help.
After a few years, my symptoms worsened again – when I was put back on a low dose, this was effective. I would like to reduce and stop medication in the future, at some point.
I have worked in a large company for ten years, and found my employer sympathetic. It’s mostly possible to take time off for appointments – often at inconvenient times.
My condition has improved more quickly that it could have done, because I had a supportive employer.
Perhaps the benefit of working for a larger company is that, in my case at least, the workload can be shared with other colleagues so I have a level of flexibility when it comes to attending appointments and treatments. The support from work has also been effective because my condition has only been disclosed to colleagues who need to be aware of my limitations.
How could treatments and services be better for people with OCD?
GPs need to be more aware of OCD and other mental health conditions. Although my experiences of initial referral have largely been positive, there have been problems (for example, when seeing someone other than my own GP) where the GP seems to lack awareness of OCD or of what can be provided. This puts me in the position of being an expert patient. A person should not have to be highly articulate and persuasive when they are feeling very unwell.
Thirdly, there should be support for individuals at each step of the way. There is a wait between referral and assessment, and then (an often longer wait) between assessment and treatment. It would be helpful to have someone to contact for support during that wait – which can seem very long when unwell (2 days – 2 weeks to assessment, 6-12 weeks to starting treatment).
Author: Dickon Allen. OCD Patient.
What could help improve services for people with OCD?
Six people give their views on what could improve services for people living with OCD. They are from varied backgrounds and give different perspectives: as patients, from charities and from different levels working in mental health services.
Improved access for hard to reach groups
“We’ve had success with outreach, such as welcome groups and drop-in services, to engage patients who otherwise would not engage with services. Drop-in is an opportunity for people to ask questions and receive background information, to help them engage with services and make their assessment or referral more successful.” Amreen Ashgar, Senior Cognitive Behavioural Therapist / Daily Supervisor Talking Therapies - Community Mental Health Team Link Slough
Continuity of care
“There should be support for individuals at each step of the way. There is a wait between referral and assessment, and then (an often longer wait) between assessment and treatment. It would be helpful to have someone to contact for support during that wait – which can seem very long when unwell (two days – two weeks to assessment, six to twelve weeks to starting treatment).” Dickon Allen, person living with OCD
“Many people need proper, long-term care coordination from a link worker who has a holistic view and looks at day-to-day issues. In theory, anyone in contact with the community mental health team should have care coordination, but some people are deemed not sufficiently ill to warrant one.” Lynne Drummond, Consultant Psychiatrist and Head of South West London and St George's Mental Health NHS Trust's Specialist Obsessive-Compulsive (OCD) and Body Dysmorphic Disorder (BDD) Services
Putting patients at the centre of services
“I think services need to be more patient centred. Therapists tend to work in a patient centred way, but the constraints of resources and meeting targets can limit the way they work and the number of sessions that they see people for… it can almost feel like ‘one size fits all’.” Christine Molloy, Psychological Wellbeing Practitioner, University of Manchester
Improving general awareness of OCD among mental health professionals
“Too many mental health professionals out there don’t understand OCD. For example, I am still hearing stories of people who have been told they don’t have OCD because they don’t wash their hands or check things. They must understand the condition better. They need more training. Understanding about the CBT approach is important. Too many therapists try to force the exposure exercises. Therapists need to work harder to help understand patients.” Ashley Fulwood, Chief Executive Officer, OCD UK
“There is a general lack of awareness of OCD in the mental health care system. For example, people may have received inadequate medical treatment. Or they haven’t received the recommended Exposure Response Prevention treatment, in the correct dose and intensity, which is essential for OCD. Sometimes they receive other therapies, e.g. mindfulness (not recommended in NICE guidance).”
Lynne Drummond, Consultant Psychiatrist and Head of South West London and St George's Mental Health NHS Trust's Specialist Obsessive-Compulsive (OCD) and Body Dysmorphic Disorder (BDD) Services
Support is needed for self-help
“People struggle on their own with self-help. Very few people can follow a self-help programme without support, due to doubts about what they are doing.” Lynne Drummond, Consultant Psychiatrist and Head of South West London and St George's Mental Health NHS Trust's Specialist Obsessive-Compulsive (OCD) and Body Dysmorphic Disorder (BDD) Services
“When people have support, they are more likely to complete and benefit from the online self-help programme.” Christine Molloy, Psychological Wellbeing Practitioner who worked on the OCTET trial
Specialist training for IAPT services
“NHS Digital’s data show that OCD recovery rates vary widely between different areas. Anecdotally, investment in training in one area has paid off – someone was employed for a year to give training for therapists (secondary care + IAPT). The improvement was reflected in good recovery stats and good feedback from recovery support groups – therapists doing the right things, making recoveries. In an adjacent area without extra training, people are not having the same experience – they are being pushed into exposure too early.” Ashley Fulwood, Chief Executive Officer, OCD UK
“The typical person with severe OCD is in their forties and living at home with elderly parents caring for them… Support for families is currently non-existent – the specialist service sometimes has to ask for carers’ assessments on their behalf.” Lynne Drummond, Consultant Psychiatrist and Head of South West London and St George's Mental Health NHS Trust's Specialist Obsessive-Compulsive (OCD) and Body Dysmorphic Disorder (BDD) Services
Working through Obsessive Compulsive Disorder
I was diagnosed with OCD about 10 or 15 years ago, when I was in my early twenties. The problems I have are intrusive thoughts, checking things such as that lights are turned off, windows are shut, doors are locked. It used to take me fifteen minutes to check the car was locked. At the time, my GP referred me to a counsellor, who I had to pay for. The therapist was nice but he didn’t give me things to work on myself. Overall, I didn’t find it very helpful for my OCD, but I didn’t think I had any other options but to just try and get on with life.
Much later, I went back to my GP as my symptoms were troubling me again. This time he referred me to an NHS service close to home called Time to Talk. The treatment involved several weekly sessions at a centre, where I was given exercises to do, as well as talking through problems. The exercises included writing down the thoughts I had while I was checking things, and trying to gradually reduce the number of checks I made. I was also asked to try to identify triggers for my anxiety like being worried about work.
I’ve always done manual shift work. My employer at the time used to allow me time off to go to the sessions, or arrange my shifts so that I could get to them. At some point, I was also prescribed citalopram, to help with my anxiety. The medication seems to help, but I have had side effects such as increased tiredness and an upset stomach. These issues are hard to cope with in my kind of work, as shift work is tiring anyway, and I work outside. So I don’t eat any meals at work, to try and manage things.
Some years later, I moved to a different area. When I realised that my OCD symptoms were causing me difficulties again, I went to see my new GP. He referred me to Time to Talk again, in my new area. This time, my employer refused to give me time off to attend face to face sessions during the day. There weren’t any evening sessions available at the centre, the days they were open were quite restricted, and the service did not offer phone appointments apart from a short assessment. This caused a delay for me of many months in receiving any help, until the service provider said that they were trialling an online service.
Chatting with a therapist could be arranged for any time, at a few days notice. I only find out my shift pattern the week before, so I cannot make appointments far ahead. The online arrangement worked very well, as it was available on any weekday. They didn’t do evenings, but I fitted it round my shifts at short notice.
Before each session, I had to fill in an emailed questionnaire about my moods and anxiety that week, to use as the basis for a session. My OCD symptoms got a score out of ten for the level they were at each week.
Using the online service was like talking to someone on Facebook. The online chat was for about half an hour to 45 minutes. I logged on at the arranged times and started chatting with the therapist.
I found it much easier to talk to the person online than face to face, as I felt less pressure. The therapist asked how things were going, and we would decide at the start what we were going to talk about and work on together.
They would give me a couple of tasks to work on before the next session, for example, we would agree homework like not checking door locks more than twice, and I was to write down how I felt about that. I never felt pressured to talk about things I couldn’t handle.
By the end of the series of sessions, my OCD score had improved. How they left it was, if I got worse again, I should go back to my GP. I am aware that I could also refer myself directly by phoning the service. I’d prefer to go via the GP because I think it’s a bit quicker, but maybe the wait was made much longer because of the problems with my employer, I’m not sure.
Produced by the University of Southampton on behalf of NIHR through the NIHR Dissemination Centre