Obsessive Compulsive Disorder

On this page:

What is OCD?
How common is OCD?
Can OCD be treated?
How can service users get help?
Referring service users from other parts of the U.K.
Referring treatment refractory patients
Practical advice
Support groups
Recommended reading
Questionnaires for clinical use

The National Commissioning Group for Highly Specialist Services (NCGHSS) of the Department of Health has commissioned a service for the treatment refractory Obsessive Compulsive Disorder (OCD) or Body Dysmorphic Disorder (BDD). Please click here for further information.

Nearly everyone has occasionally experienced brief runs of repetitive thoughts, urges, or impulses, (like having to check the door is locked several times, or have doubts that they have washed their hands thoroughly enough after handling something dirty). Usually these can be dispelled easily and so cause little discomfort. For some people, however, these kinds of worries really take a hold, and they find that they get stuck in cycles of doing something over and over again, like washing their hands again and again, counting up to a certain number, or checking something several times to be sure they’ve done it right. When these kinds of behaviours become a persistent problem and interfere with the person's life, it is know as obsessive-compulsive disorder (or OCD for short).

Children of all ages can be affected by OCD. For more information about child OCD, please visit this website: OCD in children and adolescents

What is obsessive compulsive disorder?

Obsessive Compulsive Disorder (OCD) is a form of anxiety disorder, which can vary in severity from very mild to severe. OCD can take many different forms, but is generally recognised as recurrent, intrusive thoughts, images or impulses, which cause anxiety or do not seem to fit with the way the person sees themselves or the kind of person they are or wish themselves to be. These thoughts are usually accompanied by compulsions which may take the form of either behavioural acts (such as washing or checking) or mental acts (such as repeating words or phrases or checking things in the mind). These compulsions often take up hours of each day (they usually take at least an hour) or cause a lot of distress to the person. The person knows that the thoughts are senseless, is aware that they are their own thoughts, and that they are probably worrying too much about them, but nevertheless feels compelled to try and get rid of the thoughts, usually by doing some sort of compulsion. OCD can be a very upsetting, distressing disorder, and sometimes people feel very ashamed and embarrassed by the symptoms of it, often thinking for instance that having horrid thoughts means they must be a horrid person.

Sometimes obsessional symptoms can arise in the context of depression, or other problems. In this case it is always helpful to treat the main problem first, as this in itself may resolve the symptoms.

How common is OCD?

In the United Kingdom prevalence is 1.2% of the adult population. At the GP’s surgery 2-3% of service users visiting will have OCD. Because it is often a ‘secret’, or ‘hidden’ disorder it is poorly reported and identified, and these rates are thought to be underestimates of the true figures. ( N.I.C.E)

Can OCD be treated?

The most effective treatment by far for OCD is cognitive behaviour therapy (CBT), and this should always be the first line treatment, as there is much evidence to support its use. Many people are offered other psychological treatments but, other than behaviour therapy and cognitive behaviour therapy, there is no evidence that such treatments are effective so we do not offer them in the clinic. CBT is a short term, structured, problem focussed and goal directed form of therapy. It helps the person get a full understanding of how the problem works, introduces new ways of looking at it, and teaches the person the necessary skills to understand and overcome their problem. It aims to enable the person to become their own therapist when therapy ends. In randomised control trials 75% of service users with OCD are significantly helped by this therapy. CBT is not known to have any risks associated with it.

In cognitive behavioural therapy we usually spend the first two or three sessions making sense of how the OCD problem works and what keeps it going. The idea is that if we can understand the factors that keep a problem going, we can then take the next step which is to think about alternative ways of viewing the problem and what we can then do to change it. Here is an example of how we might draw a problem out with someone in a therapy session. It is based on many different examples from people we have worked with in the past (all details are anonymised).

Some people may also need to take medication. This usually takes the form of antidepressants which act in the Serotonin System (called SSRIs). The best known and most widely used of these is Fluoxetine (Prozac). The biggest problem with this medication is that once it is stopped OCD tends to return very quickly. Treatment should usually involve CBT in the first instance.

How can service users get help?

If you think a service user is suffering from OCD you should refer him / her to your local Community Mental Health Team ( CMHT ).
This team should assess the service user's needs, and if they are unable to treat him / her locally they could refer the service user direct to Specialist Services, or any other national OCD services which may be closer to where they live.
There are various referral routes to our service, but it does depend on the service user's GP’s registered address and the service agreements our hospital has agreed with the service user's local Primary Care Trust (PCT). From a very small amount of areas we can receive a referral direct from a GP. However, for the majority of areas the referral must come to us via the local CMHT to enable us to obtain authorisation to offer an assessment, and/or treatment. In certain cases, once we have received the referral we would have to approach the local PCT on an individual basis to request authorisation to offer your service user our service. This is quite a routine thing to happen, similar to any specialist services that are required on the NHS i.e. the service user starts at their local hospital, but if more specialist expertise is necessary they may be referred on to a more expert specialist in the disorder they have.
Please note that we do not accept referrals of people who have recently been prescribed medication in connection with their anxiety problems. Any medication of this type must have been at a stable dose for two months.
At our clinic when the referral is received and authorised this will be discussed by our team. If the team decide that the service user would be suitable for an assessment, we will write to the service user and the referrer to advise you that your service user has ben placed on our waiting list.We will write to your service user again in due course inviting them to contact the Centre so that we can offer them a choice of appointment dates.
At this service we endeavour to offer service users a choice of appointment within 13 weeks of the date of the authorised referral.
Once the service user has accepted an appointment they will be sent out some rather lengthy, but very important questionnaires covering different aspects of OCD, anxiety and depression. It is essential that these are completed prior to the assessment and brought with the service user on the day. We do expect that if for any reason a service user is unable to attend on the day they let us know, preferably in advance. If not we will write to them assuming they no longer require our help, and will discharge them if we receive no reply. If your service user misses the appointment, but requires another, there may be a lengthy delay as they will go back to the end of the list.
The assessment appointment usually takes around 2 hours; sometimes it can take longer in which case we may need to ask the service user to come back. The service user will be asked very detailed questions about their obsessional problems and any other problems they may have. It is important that we get a very clear understanding of their problems in order to establish what kind of help they may need. We routinely videotape our assessments, which we think is good practice as it means we can be sure we all carry out our assessments to a high standard. It also means that other members of the OCD team can be involved in discussion about your service user's care.
We will not make a decision about what is the best way to proceed on the day. We will consider your service user's case and discuss it with the team, and aim to let you and your service user know within a couple of weeks.
We will write back to the referrer after we have completed the assessment and made decisions about the service user's care. We have a policy whereby if service users wish to be copied in on letters we are happy to do so with their signed consent.
If we feel we are able to help the service user with treatment this would begin soon after assessment if that is convenient for the service user; in most instances this would be less than 18 weeks from their referral first being accepted. If the service user's main problem is hoarding, the waiting time may be longer. This is because we anticipate a number of home visits that take up more time that standard appointments which takes greater planning in advance.
We would offer suggestions to the referrers about management of the service user's care in the meantime, if this is appropriate.
If, at assessment, we do not feel we are able to help the service user then we tell them the reasons for this and make suggestions as to what would seem more helpful ways for him / her to proceed towards finding help for their problems.

Another alternative is a referral to the residential unit of the Centre for Anxiety Disorders and Trauma, which is based at the Bethlem Hospital. It provides intensive CBT on a residential basis for OCD and BDD sufferers.

Referring service users from other parts of the U.K.

If your service user lives some distance from the Maudsley Hospital please see below for an outline of the available options:

A standard treatment at the Centre for Anxiety Disorders & Trauma at the Maudsley Hospital, headed by Professor Paul Salkovskis: service users are offered 12 therapy sessions, plus one follow-up session, on an out-patient user basis. The sessions are usually once weekly, which might make travelling difficult for this service user.

An intensive treatment at our centre at the same unit mentioned above: service users are offered up to 18 hours of therapy, plus one follow-up session, over the course of 5 days (with a weekend break in the middle), again on an out-patient basis. We do not have residential facilities, and so all service users who receive intensive treatment through our Centre need to make their own living arrangements over the week-long course of therapy. This option is more expensive to fund than the standard out-patient treatment, and would require your service to agree this funding. Please also note that for both of the options above, Professor Salkovskis has an extremely restricted caseload, and is unlikely to see referrals for therapy personally. He is however directly involved in the supervision of clinical cases at the Unit.

Should neither of these options be practical for your service user, they may wish to be seen on a residential basis at the Centre for Anxiety Disorders & Trauma residential unit, which is located at the Bethlem Hospital, and is headed by Dr David Veale: The residential unit offers both intensive treatments and also longer stay treatments. This represents a different category of funding to the other two options, as a residential treatment.

Once you have clarified your service user's wishes regarding whether they would prefer residential or out-patient treatment, staff at either unit would assess them and make a recommendation as to that service user's suitability for standard or intensive treatment. However, the first issue to consider is whether your service user wishes to be seen at the out-patient unit at the Maudsley Hospital, or the residential unit at the Bethlem Hospital.

Before making a referral to our service it would be helpful if you could discuss this with your service user and let us know in your referral letter which option you wish to pursue. Once you have agreed funding for the relevant treatment option and we have received your referral, we will place your service user on our waiting list for an assessment, and will write to you with a summary of the assessment and recommendations thereafter.

Practical advice

Find out as much as you can about OCD. Good places to start are OCD Action or OCD-UK, which are great places for support, information and advice. This also gives people the opportunity to talk with others who either have or know of OCD. It is important to remind service users that they really are not alone with this problem.

If your service user feels able and ready to start working on the problem there are a variety of self help books which may help them get started. If this is not an option they may decide instead to try to get some professional help. As there can often be rather long waits on the NHS for therapy some service users may wish to seek a therapist privately. The British Assocation of Behavioural and Cognitive Psychotherapists are a good source for getting help and advice about finding a suitable therapist. The register of accredited therapists can be found at CBT register or on 0161 797 4484

Are there support groups service users can contact?

There are a growing number of organisations providing support for sufferers of OCD. The most well known are:

OCD-UK
PO Box 8955
Nottingham NG10 9AU
0845 120 3778 or 0870 126 9506
www.ocduk.org

OCD Action
Aberdeen Centre
22-24 Highbury Grove
London N5 2EA

Telephone: 020 7226 4000
www.ocdaction.org.uk

No Panic
93 Brands Farm Way
Telford
Shropshire
TF3 2JQ

O808 808 0545 freephone helpline 10am-10pm
01952 590005 (office)
www.nopanic.org.uk

Triumph over Phobia
PO BOX 3760
Bath BA2 3WY
O845 600 9601
www.triumphoverphobia.com

Anxiety UK (formerly National Phobics Society)
Zion Community Resource Centre, 339 Stretford Road, Hulme, Manchester, M15 4ZY
Tel: 08444 775 774
www.anxietyuk.org.uk

Questionnaires

Some of the questionnaires used by our clinicians for assessment and treatment of OCD can be found on our questionnaires for clinical use page.