OCD Action

From Cliff Snelling, Trustee of OCD Action:
As part of my role as the Carer Representative on the NICE OCD Guideline Development Group, I undertook an extensive study into the effect on the families and carers of people with OCD. The purpose was to get as much up-to-date information from as wide a range of families and carers as possible.

The study sought to describe the experiences and feelings of carers and to outline their needs, which as far as possible, were described in the terms of the carers. Previous studies have looked at the effect on families from a clinical perspective but this study sought to describe the current situation for carers as they see it. The study found that there is a lack of awareness of OCD throughout the healthcare system generally and amongst the public generally. It also found that whole families can suffer severe distress, hardship and huge financial costs as the result of caring for a loved one with OCD.

• Click here to view the complete document.
• Click here to see the NICE Guideline.

Been there, done that – Been where, done what?

OCD sufferers will know what it is like to have OCD and how it affects their lives. Families and carers will also know and how it can affect sufferers and how it can affect their behaviour in certain situations. They have been there, done that, but the vast majority of the public don’t know about OCD or mental health in general, nor do the politicians so how do they know what it is like and what OCD can do to sufferers and families? The short answer is they don’t know. So let’s tell them about it and make OCD as well known as heart disease or cancer and get the same attention and resources for the treatment and research into OCD as there is for those other conditions.

So who do we tell about OCD? Politicians, medical services, social services, local authorities and other public sector organisations providing essential services such as housing and anyone dealing with the public including the police and schools. In fact anyone and everyone; shopkeepers, librarians, bus drivers. The more we can bring this into the open the better. Let’s get rid of the stigma attached to mental health and make everyone aware of OCD. We can do it by word of mouth and by writing to people and just by introducing the subject in conversation whenever appropriate.

To help tell people about OCD the following example can be used:

What is it like to have OCD and how do we go about getting the recognition and resources OCD deserves? Here is a short story you can tell as a small example of how OCD can affect people’s everyday lives.

There was a queue of people waiting to get on a bus. The two people at the front both had a large, heavy shopping bag in one hand. The first person had a broken arm that was in plaster and he couldn’t get hold of the hand rail, so the other passengers helped him onto the bus. The second person had OCD and couldn’t get hold of the hand rail because of contamination fears and was ridiculed by the other passengers.

It is easy to see the first persons’ problem but OCD can’t be seen and so – in their ignorance – the other passengers dismissed the sufferer as being “mad” or just being awkward. If only you could see OCD or it was as well known as cancer or heart disease.

Tags: Carers, Families

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