To read our recent outcomes report please click here. Advocacy Achievements

Advocacy is about exploring options, securing rights, providing representation and enabling people to take the opportunity to regain power and control over their lives.

We will not tell you what to do but we can provide representation and support and give you information on your rights and options.

How an OCD Action advocate can help you?

OCD Action’s advocacy programme, funded by The Lloyds TSB Foundation, is benefiting people throughout the country by making resources available online and in print, providing telephone advocacy support throughout the UK and by working directly with people face-to-face in the Birmingham, Manchester and Liverpool areas. If you have an issue that you would like help with then please contact our Advocacy Manager Jude Wynne who can be accessed via our helpline number or via e-mail

0845 390 6234 / jude@ocdaction.org.uk

You can also share your concern with others via the online forum on this website under the heading ‘ Advocacy’. Sometimes the issues we deal with are fairly common and other forum users may have been in a same position.

Useful Information

The advocacy service has now provided information leaflets on the following;

• Your Rights – OCD & Accessing Treatment
• Your Rights – OCD & Detention under the Mental Health Act
• Your Rights – OCD & Work
• Your Rights – Housing
• Employing People with OCD
• OCD and Advocacy
• Referral to a Centre of Excellence for OCD
• Template letter to a referring clinician
• Your Rights powerpoint presentation
• CBT Checklist – a guide to what good CBT should and should not include
• Public Equality Duty – Changes in the law that affect you

You may also find these useful

• GP Card
• NICE guidelines

Some useful external links

• Action for Advocacy ( information about the Advocacy Charter and Code of Practice)
• Equality Act Guide (Equality and Human Rights Commission)

How the service is run

OCD Action’s Advocacy Service is run by the Charity’s Advocacy Manager, Jude Wynne. Jude works with a team of trained volunteer to provide support to clients.

Jude joined OCD Action in October 2009 as their Advocacy Manager with a remit of developing Advocacy support for people with OCD.

She began her career as a journalist, later joining the BBC where she worked as a Researcher, Producer and Director for 14 years, in programme areas covering ethical issues.

She became an Advocate in 2002, working for Age Concern and supporting older people in the community and developed an interest in supporting clients involved in ‘Adult Protection’ proceedings. She was an active member of Denbighshire and Conwy’s’ Protection of Vulnerable Adults Forum’ and developed training for local Domestic Abuse Forums  She chaired the ‘All Wales Age Concern Cymru Advocacy Network’ from 2004 -2007.

Jude became a Statutory Advocate in 2007 under the Mental Capacity Act Legislation and worked in North Wales as an Independent Mental Capacity Act  Advocate(IMCA), supporting clients who lacked capacity. This role included challenging poor practice in Health and Social Care settings and  monitoring of whether Public Bodies were acting in line with legislation such as ‘The Human Rights Act 1998’, ‘The Mental Capacity Act 2005’ and latterly the ‘Deprivation of Liberty Safeguards’ (DOLS)

Jude has supported clients with Learning Disabilities and Mental Health issues within Forensic settings in North Wales and has delivered extensive training to both NHS and Social Services staff on the value of Advocacy for service users and patients with mental health issues.

Currently Jude is the North West Representative for the National Coalition of Advocacy Schemes.

What you may want to know – FAQs

1. Is an Advocate legally trained?
2. Can an Advocate give me advice on treatments and medications?
3. Do Advocates keep what I tell them in confidence?
4. Will my Advocate really understand OCD?
5. Are Advocates Independent of my healthcare team or social services?
6. Do I have to pay for an Advocate?
7. Are Advocates trained?
8. How long will an Advocate work with me
9. What happens if I don’t like my Advocate?
10. Can I complain about my Advocate?
11. Will my Advocate speak to people behind my back?
12. Can my Advocate become my friend?
13. Can my Advocate counsel me if I am feeling low?
14. Will my Advocate do what I ask them to?
15. Will my Advocate attend meetings with me or for me?
16. Do I have to give official permission for my Advocate to act for me?
17. What difference does having an Advocate Make?
18. Do healthcare professionals have to take notice of what an Advocate says?

Is an Advocate legally trained?

Advocates are not generally legally trained and cannot give legal advice, but they can help find you legal representation.

Can an Advocate give me advice on treatments and medications?

Advocates are not clinicians- they cannot advise you on your medications or therapy but they can find out information for you so you can make informed choices about your treatment. They can also support you in meetings with healthcare professionals and social services.

Do Advocates keep what I tell them in confidence?

Advocates should operate to a ‘Code of Practice’ which maintains confidentiality (you can ask your Advocate to provide you with a copy of their Code of Practice). There are circumstances when confidentiality has to be breached and your Advocate should discuss these circumstances with you.

Will my Advocate really understand OCD?

Lots of Mental Health Advocates will have knowledge of OCD. The OCD Action Advocacy Service however provides Advocates with an in depth knowledge of OCD as our service is exclusive to people with the condition.

Are Advocates Independent of my healthcare team or social services?

All Advocates should be Independent of your healthcare providers or local authority. They are not members of your clinical team. Some patient Advocates are employed by the NHS but they should still maintain independence when representing you.

Do I have to pay for an Advocate?

No

Are Advocates trained?

Professional Advocates have usually had training in Advocacy and there is now an Advocacy Qualification that most Advocates are encouraged to have. Depending on the type of Advocacy, training can be quite intense. However Volunteer Advocates are more likely to be trained by the organisation for which they are working. They should be supervised and monitored by an Advocacy Manager and work to an established Code of Practice

How long will an Advocate work with me?

This depends on the type of Advocacy being offered. The OCD Action Advocacy service is ‘issue based’ this means that the Advocate will work with you until your issue or issues have been resolved

What happens if I don’t like my Advocate?

You are entitled to stop working with your Advocate whenever you like. In a service that provides a number of Advocates you can ask the Advocacy Manager for a replacement Advocate.

Can I complain about my Advocate?

Yes, most services have a complaints procedure that you can access.

Will my Advocate speak to people behind my back?

No, your Advocate cannot speak to anyone without your say so (unless confidence has to be breached) you would be informed if this was to happen.

Can my Advocate become my friend?

Advocates can be friendly but not friends. An Advocate has to maintain appropriate professional boundaries to be able to work with you in the most effective way.

Can my Advocate counsel me if I am feeling low?

Advocates often get to know their clients well and help them in whatever way they can, but they are not trained counsellors or therapists and should not take on this role with you.

Will my Advocate do what I ask them to?

Yes, your Advocate will work solely on your instruction.

Will my Advocate attend meetings with me or for me?

Yes your Advocate should be happy to do either.

Do I have to give official permission for my Advocate to act for me?

Yes you will have to sign ‘A Form of Authority’ which you should read and agree before signing. This will set out in what areas you would like the Advocate to act for you. Healthcare professionals and other agencies will not engage with an Advocate unless they have your permission and it is best that this is in written form

What difference does having an Advocate Make?

Feedback from our clients tells us that Advocacy can be incredibly effective in resolving issues. Clients feel supported in getting their views across.Advocates can represent their views, challenge poor practice and can point out to professionals when their client’s rights are being infringed. Some people only use Advocates as sounding boards to discuss their options, others who may be very unwell, rely on Advocates to attend meetings for them, make phone calls and write letters. An Advocate’s role however, is not to make you dependent on them but to help you regain your confidence so you can do things yourself. Your Advocate should work with you in a way that is most comfortable and helpful for you.

Do healthcare professionals have to take notice of what an Advocate says?

Some Advocates have ‘ statutory powers’ this means that Public bodies such as the NHS have to take notice of what they say. The Two types of statutory Advocates are : Independent Mental Health Act Advocates ( IMHAs) who work with people who are under a Section of the Mental Health Act 1983 ( amended)and Independent Mental Capacity Act Advocates(IMCAs) who work with people who have lost their mental capacity and have nobody else to represent them. OCD Advocates and most other advocates are non statutory but they are still very effective.

Due to the demands been placed on our Advocacy Service, we are currently recruiting a number of Volunteer Advocates to work in the North West of England and North Wales. These Advocates will receive training and support from the OCD Action Advocacy Manager and will have a small case load of clients near to the area in which they live. They will also provide support to the local Support Groups in their area.

We are looking for people who may, or may not have OCD. All Volunteers however, need to be in a position where they can deal with other people’s issues, without it being a problem to their own mental health. We are also keen to recruit carers or family members of people who have or have had OCD, trainee social workers or mental health workers, students, or anyone who has a desire to help people with OCD.

There are certain attitudes that we look for in potential volunteers which are: patience, understanding, empathy, tact, diplomacy, non judgemental attitude, respect for the views and opinions of others, ability to be assertive when required on behalf of clients and ideally good negotiating skills.

It is desirable to have basic IT and literacy skills and the ability to use the phone.   You don’t have to be a car driver but you should be able to access public transport easily as you might need to go out and visit clients.

Ongoing training and supervision will be given and Volunteers will be fully advised about their role and work to protocols and procedures of the organisation.

Volunteers will be able to choose their own hours and the amount of work they wish to take on, though some flexibility may be required around client visits. There are thousands of people with OCD out there that you could help!

If you are interested in joining our Advocacy service please ring Jude Wynne on 0845 3906234.

• Volunteer Advocate Application Form
• Volunteer Advocate Role Description

OCD Action has been able to help many people alread through its advocacy work, below are just some of the success stories;

Case note – Education: A student with OCD contacted us. He was in a real distress and could see his life falling apart. His OCD focused on a need to continually check his work for days on end. He kept missing deadlines and he was failing coursework and assessments. The staff at the University did not understand what his OCD meant. OCD Action worked with the student and his university to agree a plan of action and some of the changes and adjustments that the university should make. 18 months on and the student now has an honours degree and a better life in front of him.

Case note – Employment: Peter was having problems with his employer. He wanted to continue to work but felt his OCD was getting in the way. His job performance was being questioned by his manager and being seen as a ‘performance’ issue . A trained OCD Action volunteer worked with Peter and explained his rights under the Equality Act to ask for reasonable adjustments. His employers are now working with him to try and implement these and Peter continues to hold down his job.

Case note – accessing treatment: Mrs S has had severe OCD for over 32 years. She contacted OCD Action because after years of fighting for the specialist support she needs, she had reached a dead end. Her local services had discharged her saying that “there is nothing more we can do”. OCD Action talked her through the agreed NHS procedures for accessing a centre of excellence and one of the Charity’s trained volunteers went with her to discuss this with her local care team. Finally, her local care team agreed to refer her to a centre of excellence.

Case note – service providers: Miss P has severe OCD and her fear of contamination rules her life. She finds it very difficult to come out of her room and leave her house. When she developed a serious physical condition, she could not face going to the hospital. The fear of contamination was too much for her. Some attempts were made to get her to go to hospital but she fled each time , leaving her condition untreated and her health deteriorating.OCD Action worked closely with Miss P and with the hospital management team to agree how medical procedures could be carried out to minimise Miss P’s fears whilst still undertaking the test and treatments she needed. She is now managing to access treatment at the hospital after adjustments were made for her.

Mrs S

Mr S rang service; his wife has had OCD since childhood and spends up to 18 hours a day involved in washing and cleaning rituals. This lady’s husband and family are her ‘carers’. Mrs S is intolerant of SSRI’s (drug therapy) due to a pre existing medical condition and she cannot access CBT as she is from Somalia and cannot speak English. Two NHS Trusts have been unable to provide a CBT service that will cater for this lady- her Advocate is now involved in pressing for appropriate services for her.

Miss R

Working student with OCD- intrusive thoughts, checking rituals. Currently has a job with a large department store. Client’s checking rituals in the morning are causing her to be late for work and as a result she has been cautioned under usual lateness protocols. Her Advocate has provided factsheet information regarding her rights under the Disability Discrimination Act for her to take to her Human Resources Manager. She has disclosed she has OCD and this is currently not being taken into consideration by the Firm. The Advocate is supporting Miss R in her right to ‘Reasonable adjustments’ which the firm have a duty to make.

Miss O

Severe OCD, unable to wash, eat, and carry out any daily living activities. She had been assessed for urgent in patient treatment but had heard nothing for three months.. Advocate became involved and within a week referral came though and client was offered a place almost immediately. Miss O requested a visit as she felt she was not making progress as she was getting conflicting advice re her treatment. Her Advocate able to write to the staff on her behalf asking for clarification of care plan, goal setting and that she be involved in meetings about her care and treatment. The Advocate was also able to co ordinate local support for client whist she is in hospital.

Mr  N

Computer sciences student at Northern University, Mr T has severe OCD (Contamination and checking). He is trying to complete his first year but has problems handing work in on time as he has ritualised checking of essays. The University are penalising and down grading his work for being handed in late inspite of the fact that they are aware of his OCD. Mr T feels victimised.  This is causing him to become more anxious, stressed and depressed.He is a high ability student. His family have written to his tutors and have had no satisfactory response. Advocate worked with Mr T to formally challenge the University on their failure to make ‘Reasonable adjustments’ under Discrimination Law. Mr T’s essays were remarked and he was awarded joint top of grade for his year.

There are a number of ways that OCD can present itself at school and a student who is suffering from OCD may show some of the following signs:

1. extreme tiredness (may be up at night doing rituals or simply exhausted by the constant battle with the thoughts and compulsions
2. school refusal
3. repeated lateness
4. poor concentration ( may be distracted by thoughts/rituals
5. rituals may involve working very slowly and carefully, repeating and checking – and redoing work and repeated questions
6. a student with OCD may keep asking to leave the room e.g. if they need to carry out washing rituals
7. low self-esteem and difficulty with peer relationships
8. separation anxiety from family particularly if their obsessions are related to harm coming to their loved ones
   
9. Parents and siblings of OCD sufferers are likely to be having a very stressful time too so they may present as anxious and distracted

There are ways of minimising the impact of OCD in school. Once it is confirmed that a young person is suffering from OCD it is helpful for the school to liaise with the child’s therapist to find out what their treatment programme involves and how the school might support the young person in fighting against their OCD. The following ideas are some techniques that have been helpful to young people with OCD in their school setting:

Communication:
A home/school diary to ensure clear communication with regard to behavioural and circumstantial changes .

A within-school “envelope system” whereby all staff who have contact with the student can put a note in the envelope when necessary to build up a picture of progress or concerns and to ensure that feedback to parents is more informative.

Multi-professional meetings so that all staff involved are aware of the student’s current targets. School staff may be asked to comply with an intervention to reduce reassurance seeking of frequent requests to visit the toilet

Direct Support for Student:

A “mentor” who understands OCD within the school setting for the young person to talk to regularly. A talk at the end of each day evaluating the positive and negative aspects can help keep perspective.

If possible arrange for the student to meet with someone before the school day starts to prepare them for the day.

Some paper and mental exercises (”brain gym”) can help to prepare them for learning and be a welcome distraction from rituals and obsessional thinking.

A desk signal system so the student can indicate discreetly how they are doing e.g. place a red disc on their desk if struggling and a blue disc if OK

Provide a scribe on a bad day or offer handouts

A “study buddy” who is prepared to photocopy their notes for the student could help them to feel less isolated

A student with OCD may need more explanation about a piece of work, reminders about deadlines, advanced warning about changes or special activities e.g. outings and sports days, planning for exams and tests should be done well in advance to reduce anxiety e.g. extra time or a scribe may need to be provided to ensure that the student is not disadvantaged.

Young people suffering with OCD may need to take a longer route through their GCSEs, AS and A2 levels. Remind the student that education is not a race but a life long process and they will get there in the end. Parents too often need this reassurance.

If you are a young person with worries yourself, or a parent, guardian, or teacher with concerns about a young person, this section might answer your questions.

OCD can affect children, adolescents and adults. At least half of the adults who get help for OCD already had it as children, but many of these people did not get help when they were younger. This might be because they were embarrassed about it, and did not tell anyone, or because doctors they asked for help did not know how to diagnose or treat OCD. It seems likely that if the illness is ‘caught’ and treated when people are young, they will suffer less in later life. Recent studies show that OCD may affect 1% of young people; that means if there are 500 children in a school, there could be 5 who have OCD.

Problems with obsessions and compulsions can cause distress and worry, and can begin to affect young people at school, with their friends and in their families. Many children have mild obsessions and compulsions at some time, for example having to organise their toys in a special way or saying good night a certain number of times. This is not OCD. So, parents might ask “What might be the signs that a young person’s rituals are the beginning of OCD?”.

To begin to answer this question, assess these three things:

1. Are the rituals upsetting?
2. Do they take up a lot of time (more than one hour per day)?
3. Do they interfere with everyday life (eg, school, friends, etc)?

If the answer to these questions is ‘Yes’, it may be that the young person has OCD. At this point it is time to get some advice from a professional. OCD is a recognised, treatable problem, so there is no need to suffer alone. You should tell somebody if you can. Talking to your family GP is vital as s/he can put you in touch with the right help

Use the links to take you to the Amazon website and remember, for every book purchased this way, OCD Action receives a small commission.

BDD Books

The Broken Mirror: Understanding and Treating Body Dysmorphic Disorder by Katharine A. Phillips

Mirror Mirror Off the Wall: Body Dysmorphic Disorder and Trichotillomania by Jenifer Wolf

The BDD Workbook (Paperback) by James Claiborn (Author), Cherry Pedrick (Author)

Suicide Junkie (Paperback) by S, Westwood (Author)

Hair Pulling Books

Trichotillomania (Hardcover) by Dan J. Stein (Editor), Gary Christenson (Editor), Eric Hollander (Editor)

The Hair-pulling Problem: A Complete Guide to Trichotillomania (Hardcover) by Fred Penzel (Author)

Help for Hair Pullers: Understanding and Coping with Trichotillomania: 8 by Nancy J. Keuthen (Author), Dan J. Stein (Author), Gary A. Christenson (Author)

OCD & Young People Books

Breaking Free from OCD: A CBT Guide for Young People and Their Families (Paperback) by Jo Derisley (Author)

Freeing Your Child from Obsessive-compulsive Disorder (Paperback) by Tamar E. Chansky (Author)

Kissing Doorknobs (Laurel-Leaf Books) (Mass Market Paperback) by Terry Spencer Hesser (Author)

Touch and Go Joe: An Adolescent's Experience of OCD (Paperback) by Joe Wells (Author)

OCD Books

Loving Someone with OCD: Help for You and Your Family (Paperback) by Kathleen Rupertus (Author)

Overcoming Obsessive Thoughts: How to Gain Control of Your OCD (Paperback) by David Clark (Author), Christine Purdon (Author)

Overcoming Obsessive-Compulsive Disorder (Paperback) by David Veale (Author), Rob Willson (Author)

Cognitive Behavioural Therapy for Dummies (Paperback) by Rob Willson (Author), Rhena Branch (Author)

• Danger Ideation Reduction Therapy (DIRT)
• OCD and Brain Activity
• Talking the drugs away
• Clinical review: Obsessive-compulsive disorder
• Mental health services ‘failing’
• Mental health problems and learning disabilities
• Obsessive-Compulsive Disorder is Familial
• Genetics link to obsessive compulsive disorder
• Cognitive Therapy: Don’t Tell Me About Your Childhood

BDD Articles

• Plastic surgery: the new addiction

Hair Pulling Articles

• Disorder gene found
• Mice Learn Tasks That May Help Treat Human
• We’ve lost all our hair (and we’re still beautiful!)

Compulsive Skin Picking Articles

• Article: How To Stop Compulsive Skin Picking and Scratching

Young People

• Combination therapy for Childhood anxiety disorders
• Young people and family based treatment
• Young people and “full blown” OCD
• Obsessive Compulsive Disorder in Children
• Kids with OCD bullied more than others

OCD Action has created this links pages as there may be times when people are seeking other information, not only on OCD, which is outside the scope of what we do.

Links are presented in alphabetical order. Some of the sites will be of a personal nature (designed by people with OCD, etc., or their friends or families). If you would like to submit a link to be included on this page, please contact us. We endevour to include links that we feel will be of benefit to our users and do not include links that either promote products or solicit donations within the UK

OCD Action is not responsible for the content of these sites and no responsibility can be taken for the content or any action taken by anyone based on information or advice given on these sites.

UK

• OCD-plus

Europe

• Belgium (Ligue TOC)
• Denmark (Dansk)
• Denmark (OCD-foreningen)
• Denmark (Trik Norden – The Trichotillomania Organisation)
• France (AFTOC)
• France (French Yahoo Chat)
• Germany
• Holland (De OCD-vriendenkring)
• Ireland (OCD Ireland)
• Italy (Ossessioniecompulsioni.it)
• Spain (Asociacion de Trastornos Obsesivo-Compusivos)
• Sweden (Svenska OCD-forbundet Ananke)

USA

• OC Foundation Worldwide Support Groups Links
• OCD Hope- Florida
• OCD Hotline of New York/New Jersey
• OCD Center of Los Angeles (USA)
• OCD Online – New York
• Los Angeles Body Dysmorphic Disorder Clinic

Canada

• Ontario Obsessive Compulsive Disorder Network
• OCD Centre Manitoba, Inc (OCDC)

Australia and New Zealand

• Anxiety Recovery Centre Victoria (ARCVic)
• New Zealand OCD Support Group

If you are aware of any other beneficial sites, please let us know

Obsessive Compulsive Disorder (OCD) is the name given to a condition in which people experience repetitive and upsetting thoughts and/or behaviours. OCD has two main features: obsessions and compulsions.

Obsessions are involuntary thoughts, images or impulses. Common obsessions include, but are not limited to, fears about dirt, germs and contamination; fears of acting out violent or aggressive thoughts or impulses; unreasonable fears of harming others, especially loved ones; abhorrent, blasphemous or sexual thoughts; inordinate concern with order, arrangement or symmetry; inability to discard useless or worn out possessions; and fears that things are not safe, (e.g. household appliances). The main features of obsessions are that they are automatic, frequent, upsetting or distressing, and difficult to control or get rid of.

Just as with obsessions, there are many types of compulsions. It is common for people to carry out a compulsion in order to reduce the anxiety they feel from an obsession.

Common compulsions include observable actions such as excessive washing and cleaning, checking, repeatedly touching, counting, arranging and ordering, hoarding, ritualistic behaviours that lessen the chances of provoking an obsession (e.g. putting all sharp objects out of sight) and acts which reduce obsessional fears (e.g. wearing only certain colours).

Compulsions can also be mental rituals that are not observable. These include repeating words or phrases, counting, or saying a prayer. Again, not all types of compulsion are listed here. The main features of compulsions are they are repetitive and stereotyped actions that the person feels forced to perform.

People can have compulsions without having obsessional thoughts but, very often, these two occur together. Carrying out a compulsion reduces the person’s anxiety and makes the urge to perform the compulsion again stronger each time.

Almost everybody experiences the type of thoughts that people with OCD have (e.g. wanting to double-check the front door or the gas). However, most people are able to dismiss these thoughts.

People with OCD cannot ignore unpleasant thoughts and pay undue attention to them. This means that the thoughts become more frequent and distressing and, over time, they can affect all areas of a person’s life, often their job and their family and social life. A person with OCD can, however, appear to function perfectly normally despite being greatly distressed. This often makes it possible for people with OCD to hide their OCD (because of this, OCD has often been called the ’secretive disorder’).

It’s important to remember that severity of OCD differs markedly between people but each person’s distress is very real. People with OCD are not ‘mad’ or dangerous and do not carry out their unpleasant thoughts. Most people with OCD know that their thoughts are excessive or irrational but the anxiety they feel makes the thoughts difficult to ignore.

OCD is much more common than was previously thought. Prevalence estimates suggest that 2-3 per cent of the UK population has OCD. One reason why the prevalence of OCD has been underestimated in the past is that people with OCD are often afraid to seek help. They worry that other people will think they are mad, and often do not know that their disorder is a recognised condition with effective treatments. Young people also suffer from OCD. In fact, many adults with OCD had symptoms in childhood.

The cause of OCD is much debated but it is likely to result from a combination of factors in addition to this the cause for one person may differ from that for another. OCD can run in families and, in some cases, may be associated with an underlying biochemical imbalance in the brain.

Psychological factors such as susceptibility to stress or exposure to an emotionally traumatic experience are also likely to be in evidence. The good news is that, for the majority, OCD can be effectively controlled and treated.

This screening test is designed as a guide to find out whether you show symptoms similar to those of Obsessive Compulsive Disorder (OCD).

• A high score on this questionnaire does not mean you have OCD. Only a trained healthcare professional can make this diagnosis.
• This test has 20 questions in Part A and 5 questions in Part B and should take about 5 minutes.
• It was developed by Professor Wayne Goodman of the University of Florida.