Why do they make you jump through hoops?

Today is not a good day. After years and years of trying to get the right support and being rejected again I feel exhausted and dejected.

I have just finished a years counselling with RASASC. They have been amazing. From the minute I first called they were caring and sensitive. They supported me in so many ways, my incredible ISVA’s, the helpline, the grounding sessions when i thought the police would never find him, before the first and the second trial. Massage leading up to trial 1. And then a whole year’s worth of counselling. This week I said goodbye to my counsellor as my year is now up. It feels scary. Like I’m taking my first shaky steps alone. Rasasc have been incredible. True trauma informed care.

I have not always been so lucky. It’s been such a long journey to get to this point. I first had counselling when I was 25. I wanted to deal with the trauma. I had blocked so much out. I started this work and then my dad died. I was too overcome with grief to deal with the abuse by his best friend.

I had more counselling when I was in my late thirties. I was in therapy for nearly 5 years. I dealt with a lot of the trauma, but not all of it. I put it in a box and put the lid on. The lid stayed on tightly until I reported the abuse to the police 10 years later.

In the intervening time I had a child. A girl. When she was a toddler I began to feel unwell. I ended up in hospital with what was labelled viral meningitis. I went from walking in pushing a buggy to a shivery hallucinating mess. The next day I had to lay down half way through breakfast as it was too exhausting. I didn’t ever get better. This lead to 9 years of inconclusive tests. Intrusive painful tears. Nine years under a neurologist.

As soon as I had reported the abuse to the police the lid came off and all the trauma came tumbling out. I had an assessment for counselling at rasasc. During the assessment they asked me about physical ailments and I recognised them all; head aches, muscle pain, fatigue. She told me that it was likely that this “undiagnosed neurological condition” was likely to be my body’s response to the trauma.

This blew my mind. I had to wait another 6 months before I could see my neurologist again. I told her about my childhood. I asked if it was possible that the symptoms I was experiencing were linked to the abuse. She said it was highly likely. She referred me to a Neuropyschistry, to see if I had a “functional neurological disorder”. They decided this was the case and I went for an assessment for treatment. Because it was counselling (and I couldn’t have counselling prior to the court case) it had to be put on hold. For about 3 years. Finally once the second trial was over I went for the assessment.

In the meantime I had been formally diagnosed with complex ptsd. This was for part of my case with the criminal injuries compensation authority (this is for another post which I promise is coming).

At my assessment it was decided that my symptoms were clearly linked to the abuse and the best place to deal with this was a specialist trauma service. Finally. I was so relieved. After years and years of living with this and not knowing why, I finally had answers and I was finally going to get the right help.

But of course it wasn’t as simple as that. I was under the understanding that the person who had assessed me would refer me directly. The trauma centre was next door to the building she worked in. But no. I was told I needed to refer myself. I was so upset. It had already been such a battle (see https://warriorwoman.blog/2019/05/13/what-not-to-say-to-a-patient-who-discloses-a-history-of-childhood-sexual-abuse/ ).

I was exhausted of doing this alone. I wanted someone to help me. I didn’t have faith in referring via IAPT. They had already let me down once before. The neuropsychiatrist agreed to refer me to the centre. This was then sent to the local CCG (clinical commissioning group) for funding. The decision came back. They didn’t want to pay. They wanted to try the local team first. I (and he) didn’t feel they were best placed to deal with the complexities of my case so he appealed.

I still had an appointment for assessment. It was cancelled the day before. And rebooked. The assessment came and she had only booked me 30 minutes. Half an hour to discuss a lifetime full of trauma. We booked another appointment. It was cancelled about 10 minutes before. And booked again. Finally I had the rest of the assessment.

Why is it that so many services that claim to be trauma informed really aren’t? After my first appointment she had asked me to make a list of my triggers and nightmares. I felt like I had to prove I was traumatised enough. I had made the list. I was impacted every day, multiple times a day. When you live with it you don’t always see it. We went through it. We talked about my counselling… I felt under attack; so if you have had counselling why haven’t you dealt with the trauma already? I explained everything that has happened over the past year. But you have accessed a specialist service, why haven’t you done this work already? I explained I needed to deal with the trauma (especially the preverbal trauma) a different way. I want EMDR. I felt she was dismissive and not listening. I got really upset. This is a trigger for me. I explained that, she put it back on me, “I didn’t say that” she said. It felt like gaslighting.

She explained it wasn’t just her that made the decision. It was a multi disciplinary meeting where they would discuss me and work our what they thought I should have. Today. I emailed a couple of times in advance to make my case.

My phone rang today. It was her. “I just want you to know we have heard what you said and we do understand what you have been through” was her preamble. I knew it wasn’t going to be good.

They had decided it was to soon. That I need a break (surely that is up you me?). They have told me I am not “ready” for EMDR. I feel powerless. I explain this to her. She doesn’t understand my reaction. It’s not “congruent” with the situation. I explain that they have all made a decision about me which I have no say in. She still puts it back on to me. She tells me I’m “activated” and that is why I’m not ready. I explain that is part of the complex PTSD (emotional dysregulation). “ I know about complex ptsd” she replies.

But do you? Do you really? If you were truly trauma informed we would we working together, I would have some control other this, rather than being retraumatised and gaslighted by the system.

I have been told in the meantime I can try Art Therapy (which I may or may not have to pay for, again… I’ve spent nearly £10,000 in counselling, and had no support from the nhs). I have to sort this out myself, she will “signpost me” and then I need to be referred back to her service at some point in the future, and then go through this shitshow again.

I don’t mind doing art therapy. I have always wanted to try art therapy. But this is not what I need right now. I know what I need. “You know what you are requesting” I was told earlier.

I have a message for the psychologist from today. Just Fuck off with your condescending attitude.

Surely having being abused from before I could read until my teenage years should be enough. I shouldn’t have to jump through hoops.

The next day-

Today I feel angry. If I had cancer or a broken leg, they wouldn’t leave it up to me to sort out. I came asking for help. I’m tired of doing this all myself. They asked me to open it all up again as part of the assessment only to tell me that they cannot help me. Again. This is what IAPT did. Seriously, you knew my counselling was coming to an end. Why didn’t you say at the beginning I would need to be re-referred? How about managing my expectations? And to use the fact that I am still emotionally triggered as a reason NOT to offer treatment is just bizarre. Surely it demonstrates there is still a need? “Trauma” services need to stop re-traumatising those it is set up to support. It can be done. Just look at RASASC. You need to work together with those in need of support, certainly not make decisions about them without them. You are taking away there voice, and that is exactly what my abuser did.

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