Some of you will know that despite huge strides with my OCD recovery, in one area of my life there's a very specific contamination trigger remaining that I can't shake off (sexual fluid contamination) - it's relevant I mention it here as you will see later in this story.
A couple of weeks ago I decided to self-refer into my local IAPT service to try and get on top of this final OCD issue that's causing so much problem. I wasn't confident I would be able to open up about it, or if the local IAPT would have the level of expertise I suspect I need. But I had the telephone assessment, all good, a 90-minute chat and I opened up more than I thought I would. We agreed I need CBT at step 3 of IAPT. At this stage all as expected and as should be.
This is a story I have been posting on my social media since last Friday evening. I was away last week for 5 nights, and I got back from a long 9-hour drive home around 7pm Friday. I sat on my sofa and around 7:30pm started to check my personal emails and I saw an email from my local IAPT service.
As I posted on Twitter, back from few days off, my first since pandemic began, and back to earth with a huge bump within minutes of getting home.
This was part of what the letter said...
So in effect, they will not offer me CBT because they did consider I was clinical enough for treatment, based off the scores I marked down on the form questionares/measures they take.
Good example of what’s wrong with IAPT they’re reading the forms not the person.
Actually they are not meant to do that and as Professor Adam Radomsky replied "OCD is notorious for having scales which may not properly capture symptom severity because one may score very high on a few items (e.g., contamination) and zero on all others. Questionnaires should never be used in isolation.".
So in effect I spent 10 minutes completing forms, and 80 minutes, pointlessly opening my heart up, which was ignored.
My OCD, my recent random suicidal thoughts I mentioned don’t meet clinical criteria for step 3 according to them FFS.
Imagine telling somebody more sensitive that didn’t know better that plucked up courage to seek help only to be told your not clinical enough for our help That person potentially lost to the system for another few years.
To be clear I told them I have OCD, I told them I need CBT, I told them my rituals using pure bleach takes 2 hours leaving lungs gasping for air for rest of the day. If that service made the decision that’s non-clinical for treatment, then that IAPT service is unfit for purpose IMO.
I was also informed on a no reply email address with no direct contact information for the individual therapist or service. I’m a big boy and I’ll find an alternative for me, but professionally I’ll be working to ensure nobody else asking for help is discarded like this. There were so many failures in my case that I intend to address all of them with the IAPT service in question (Insight Healthcare) and with NHS England to ensure learnings are made nationally.
So back to the Friday letter.
I told them during assessment that my main worry was contamination from sexual body fluids. So they won’t give me CBT for OCD but suggest I need a psycho-sexual service. Staggers belief....
Imagine if this was a slightly different type of OCD, such a recommendation could have done so much damage. It's not NICE recommended for OCD of course either and I won't be going!
On the assessment I had asked for face-to-face rather than remote CBT, but I was told they don't offer that yet because of the pandemic. I know from my IAPT role (see below) that in mid April all services were told they must now start to offer it again or at least a waiting list for it.
I had a couple of days over the weekend to mull it over and calm down and I eventually found an email address for the therapist and I politely asked if he would explain the decision making process to me, I wanted to make sure I understood they took the clinical decision based off the form measures. I was also interested in their dataset recording of my case so I asked them what problem descriptor they used and what discharge code.
They confirmed it was recorded as OCD and code 42 for discharged, which is a now non-used code that means 'completed scheduled treatment’, which is wrong because they didn't offer me treatment. So from what I can tell they only thing they got correct was to record I had OCD.
I was then called my the team manager who confirmed the decision was made because I don't meet caseness from form scores, was purely based off that. At this point when I had got bored of her explaining what IAPT is to me and it works I interrupted to politely say for reasons of clarity, you should know that I am aware of IAPT as I work for OCD-UK and I actually sit on the national stakeholder group for IAPT at NHS England level. She then said she was not clinical so she will get the clinic lead to call me.
The next day the nice clinic lead lady called me confirmed I should have been offered CBT and I have now been placed on the waiting list. As I explained to her, that's no longer the issue, it's how many others, not as gobby as me and able to challenge such letters would have just accepted the discharge email without challenging? How many people have been lost to much needed treatment? She told me the team lead that made the clinical decision is off, she cant tell me until next week why and how they made their decision.
The poor decision itself means two problems are in play within this IAPT, a flawed decision making process where one person can over-ride a CBT therapist recommendation and the fact the team leader made the mistake means they are not suitably trained to make such decisions IMO.
This is more than about me now. I will make FOI how many others refused treatment because of scores.
As for me, I will need to review if I can trust their ability to understand and treat me before I accept the referral. I don't think I do trust them now so I may have to go elsewhere.
Why am I posting this...
Not to scare you, IAPT is slowly improving, I know that from my work. But, there are still bad services but also some great services, we just need to reduce the number of bad ones. But the reason I am posting is that I don't want anybody else thinking if they are ever refused treatment or more sessions that's it, or that you have to accept that. You can challenge.
I was asked by a colleague earlier today if they think I was now offered CBT because I challenged it or because of my job roles with OCD-UK and voluntary with IAPT. Because I had not actually asked for the decision to be overturned, merely for them to explain to me the decision process, I fear the latter reason.
But, regardless, if you are ever told you can't have treatment, always ask questions of why, challenge it if you need to and feel free to email me if you need a set of extra eyes to review what you have been told. firstname.lastname@example.org