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 (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."