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Living with OCD - a patient's perspective

Date: 26 July 2017

Category: OCD

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.

Working life

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).

  • Summary:

    Dickon Allen discusses his experience of living with OCD and getting treatment, as well as sharing his views on how services could be improved.

About the author

Dickon Allen

OCD patient

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