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Accessing treatment for OCD on the NHS


Guest Lucy

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Hi everyone

I am interested in hearing your personal experiences in accessing [CBT] treatment for OCD on the NHS.

The purpose of this information is to help me understand how easy or difficult it was/is to get treatment in your area and whether you feel the correct treatment options were offered.

Hopefully this will help me when raising awareness about OCD with the media.

Thanks in advance.

Lucy@OCD-UK

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I accessed CBT via the IAPT service in Leeds - I have to say my experience was not a particularly good one.

The self-referral scheme is good. But then there was a huge waiting time. I know that this is largely unavoidable, what with cuts and a lack of provisions and so on, but it is unacceptable - by the time people with OCD ask for help, most of them have hit rock bottom and need help immediately. You wouldn't expect someone having a heart attack to have to wait six to nine months to get CPR. I know it's not a great analogy but I'm sure you get what I mean.

I didn't know I had OCD at the time. I had never really considered it - I'm not tidy or organised, and in my mind that was what OCD was. I got help because I knew something was wrong. I was tormented by my thoughts and anxiety in general.

Eventually I had CBT, and I talked it through with my therapist. She didn't clock it was OCD either. She thought my intrusive thoughts were symptomatic of separate issues. She said she thought I had GAD and low self esteem, as I was terrified of being a bad person (something I now can see is symptomatic of OCD). She said: 'which would you like to treat?' There was no option to look at the problem holistically, which in my opinion is crucial. I said low self esteem. So we did lots of bog standard CBT such as listing my achievements, asking other people what my qualities were and so on, writing down my automatic thoughts and core beliefs etc. It turned out to be highly detrimental, as I was treating my intrusive thoughts with compulsions - reassurance seeking, researching, analysing and so on. The whole thing got worse.

I quit therapy before my sessions had finished - I think I had four in total. I have found self help to be hundreds of times better than my experience with my therapist (no exaggeration). I know I will never ask for help for this from the NHS again, despite the fact that I still suffer quite badly - although I might consider going private. My therapist was nice but she was very uninformed, and she used a one-size-fits-all approach. I also never felt really listened to - she put words in my mouth at all times.

It wasn't an awful experience, it was just a waste of time. It helped in that I felt like I was doing something. But that's it.

I hope that helps! Sorry if this isn't really the sort of thing you're looking for...

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Guest Justonce

Hi gingerbreadgirl

Thank you very much for your thoughtful and thorough reply - it's just the kind of thing I am looking for. Unfortunately your experience is very similar to mine (I'm from Bradford) and 20 years later I am still waiting for appropriate treatment and am still being offered inappropriate treatment with really long waiting lists with no guidance and complete lack of support. I'll keep trying to get media awareness about this though and it's posts like this that really help. THANK YOU.

Any one else?

:-)

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  • 4 weeks later...
Guest The_glitch_in_my_head

I've found my experience with the NHS to be a very troubled one.

I live in Heretfordshire just outside of Watford. I've found that it is hard to get in contact with specific Dr's as when the phone operator puts you through it seems 90% of the time they are out of the office, wether it is "in training" or on leave. To add to this the waiting times for appointments or even callbacks is usually 3-4 weeks long. I've been getting progressivly worse while waiting for word from them.

Also they seem keen to get rid of you. When I temporarily got in control (or more so) of my OCD my therapist was quick to dismiss me. They said they would refer me to an anxiety management group but that never happened even after 4 months. I eventually contacted my GP and they expressed concern that the NHS had effectivly forgotten about me a year from then. And I paid the price.

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  • 2 weeks later...

Hi glitch,

When you were in therapy was it helping you with your ;particular OCD?

Do you think you could carry on with what you learned with it using a workbook, or self-help book?

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  • 2 months later...

One word "terrible" I had a telephone appt last week which concluded with me being told my ocd/anxiety is through the roof I definitely qualify for cbt and I'm on a 170+ day waiting list. So within a week I've dramatically gone down. Now off work sick. My child is being looked after by my parents I'm in such a state. I work full time and pay my taxes and the one time I need help on nhs it's not there for me. I don't get paid sick pay from work either so you can imagine the mess I'm in right now. The thing is the longer I go without treatment the worse it's going to be. I've had ocd for as long as I can remember. Had terrible episode 6 1/2 years ago since then been on meds. Had no review just ring up and get repeat prescriptions. I'm absolutely outraged by the level of care available. If it wasn't for my parents and husband I don't know where I would be. I bet if David Cameron's wife had ocd she wouldn't be waiting for 170+ days to see a specialist the point is nobody cares about it yet it's such a debilitating illness. Now I'm off work got who knows how long. Marvellous. Sorry I'm just angry and emotional

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  • 2 weeks later...

Lucy when I first asked for help in London E4 I was told there was no money in the NHS Trust for therapy (so I went privately). But because I needed some diagnostics recently because of possible cancer there was no problem with loads of treatment being forthcoming including a CT scan.

Its also crazy because there is an NHS mental health unit just down the road - I wonder what on earth do they do?

The sooner the government accepts that mental health is just as deserving as physical health in obtaining treatment, and CBT is very beneficial and helps many, this sad situation is going to continue.

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  • 5 months later...
Guest zakisbak

I was referred and seen and started CBT through IAPT very quickly,a few weeks.
Maybe I was lucky here in London.

I recommend "Overcoming Obsessive Compulsive Disorder" by David Veale and Rob Willson (yes,two Ls!)
Really,really good,like it describes exactly what you feel,even what you feel about what you feel.
It was recommended by my IAPT OCD therapist.

Sorry if I sound smug,I'm really not.

I still have OCD but up until now it's been like a fog,impossible to fight,describe,you just suffer its whims.
Now,I feel I have some understanding,some real resistance to it.
This may be due to therapy,ageing,experience or,as I suspect,regular taking of medication (Clomipramine 10mg).

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