To be beyond frustrated my MH trust told me I’m too complex?

[Sillyquestion123]

I had my assessment call today, and the lady albeit very nice and understanding told me that they spontaneously be able to help as the talking therapies within my trust don’t deal with complex trauma.

As I’m also not currently depressed nor anxious, and only get symptoms when triggered I’m no way a priority.

Ive already contacted Mind which were nice, and NAPAC who were super helpful.

apparently the next step is my GP to ask to be referred to a psychiatrist.

I've only heard about his via the charities.

So AIBU for feeling so let down by my local trust?

Sorry that should say seems to be philosophical.

I was given a temporary diagnosis of c ptsd post partum, told therapy could re traumatise me and give me a mental breakdown, so I didn't pursue it and there has been no follow up whatsoever.

That's interesting to read @CharlotteLightandDark - thank you for posting. I've completed a course of CBT having had it twice before and it not working, but told I had to go through it again. I've also been referred back to the service as my issues are "too complex" for CBT - which is what I told them in the first place. I feel bad that someone has had to wait while I went through their process, which was always going to be a waste of everyone's time and resources.

but what is the answer then?

I oscillate between thinking I need treatment and then thinking I don’t.

I'm highly functioning but the more I think about it I think that either something happened to me in my earlier years that I don’t remember or definitely the generational trauma left a mark.

When I was little I always thought something was going to happen to me at night (at first I thought I would be possessed by a demon and later thought I would be adducted by aliens) so I felt safer by not sleeping. Fast forward to my pre teens / teens and I always had a fear my dad could/would rape me. None of that ever happened, but at the same time I feel they must be related.

my DH who knows me best and has the kindest of intentions but doesn’t know a lot about treatments thinks that I should focus on the autism diagnosis first and then the other stuff second.

he also has a “sense of duty “ with family which I don’t AT ALL and that’s a massive disconnect between the 2 of us.

i don’t have that many flashbacks nor triggers (I still have them) and I also have the “nightmares” but I don’t think I experience any of those symptoms more than 3,4 times a year

I got referred really quickly via GP and the service in my area has been great. I've had CPTSD for around 50 years they think and diagnosed far too late. I learnt to cope with it on my own. But they are on it right away if I have an episode where I need help. It really is something that needs to be treated by specialist services.

I’m currently on a programme with Talking Therapies after calling my GP who recorded my problems as “mild mood observations” and told me to read some nhs articles and then self refer to TT if I felt needed. I was having daily panic attacks, crying all the time, insomnia, etc etc This has been on going since I was a child but I had no support at home to access help. Still no one gives a shit.

The TT assessment did view me as severe GAD and depression, with possible OCD, which they never followed up.

I go through the motions of the course, but it’s easy to omit things when no one looks you in the eyes.

The only thing they show mild interest in is self harm/suicidal ideation. I’m not sure how qualified my supporter is. She could be going through a script.

Sorry for whinging on your thread! MH services suck.

They do! But I also don’t feel comfortable talking to my GP about my whole life it’s A LOT and I end up crying.

every time I have to explain what do I mean by traume it takes me like 2 steps back.

im happy to write it though, just not talk about it

Most NHS Talking Therapies services would indeed not deal with cPTSD. They do almost entirely CBT for anxiety and depression. That does not equate to the entire mental health trust having nothing to offer you only the IAPT/ Taking therapy part of the service so you were correctly advised to go back to your GP and ask for a referral to a different part of the service.

In our area the symptoms and severity you describe would not meet criteria for secondary care mental health services which require significant risk and/ or disability. There is an under served gap for people with issue that don’t fit under primary care but aren’t severe enough for secondary. In some areas there may be services that do operate in that gap but, due to cost, these are fairly likely to be online groups as individual therapy for all who would like it and would benefit is simply unaffordable or unfunded by the ICB.

If there is not a suitable service then the only options ar le 3rd sector charitable ones like MIND or private. Your GP or local MIND might know if there are any charities locally who provide subsidised therapy. In our area there are a few but it’s different in different places.

I’m fine with paying for it, but nobody seems to be able to actually tell me what’s the type of treatment that would work for me.

MIND just told me to go through the directory of the BACP website but that’s as helpful as a chocolate teapot IMO.

I've been through YEARS of talking therapy (paid for) and it obviously didn’t help.

I feel like I need a proper assessment with diagnosis and am some sort of action plan with the type of clinician I need. I’m then happy to source that for myself.

It’s literally a cost thing nothing ideological.

CBT is manualised, can be delivered by less qualified people and a time limited course works for many conditions. Group therapies and skills training courses are also cost effective and are able to be offered online now so a lot of places are offering group DBT or CFT.

Compare those to the expense of months of 1:1 therapy with a highly qualified clinical psychologist who has a degree, PhD and post grad training that you would need for EMDR or any trauma therapy and you can see that the economics does not stack up for the NHS to be able to offer that level of input to people with anything but the most severe cases.

We’d like to help more people. We don’t somehow enjoy turning people away but the amount of investment that would be needed is absolutely huge and money would need to be diverted from other NHS services or from other government spending to do it

I remember the days before IAPT/ Talking therapies services existed and there was only 2nd care psychology and the wait list was well over 2 years to get any therapy for anything at all so the current situation is an improvement for people with conditions that NHS TT can treat but can’t be the solution for many others unless the funding model changes.

I had to go private to see a psychiatrist and get a diagnosis of cptsd and then had private EMDR. It was amazing and cured me so very worth the money but I am very aware how lucky I was to be able to afford it and it makes me sad and angry that not everyone can.

There is the cuts in funding, but there is also research that shows much of what the NHS was offering was totally ineffective anyway.

That’s helpful so did you approach the psychiatrist directly?

I feel like I need either a clinical psychologist or a psychiatrist not someone with just a random degree and a post grad in therapy/counselling.

In which case you probably need to pay for a one off assessment with a private psychiatrist to make a diagnosis. Psychologists and therapists do not usually diagnose. Private psychiatry is relatively available. Look for someone with experience in trauma related presentations.

or cut to the chase and just get an experienced EMDR therapist if you feel cPTSD is the problem. Sometimes a diagnostic label is not as helpful as a formulation which a good psychologist would be all over.

Honestly if you are able to afford to pay I doubt you will improve on that with NHS services and I say that as someone who works exclusively for the NHS. It doesn’t do everything and this is an area that is poorly served by the NHs.

That’s the thing I’m not sure it’s cPTSD as I also have suspected autism (in the waiting list!) and some of the symptoms IMO overlap (like having no feelings for myself sister).

It was a while ago now but I believe I booked the psychiatrist appointment through my local private hospital. Then she recommended the clinical psychologist who then did the EMDR with me. He was through Clinical Partners. I really hope you get the help you need.

You obviously had some ‘non-shite’ input to be diagnosed with CPTSD

Lots of people with a complex trauma history don’t have dissociative flashbacks for example.

@CharlotteLightandDark @StElwicksNeighbourhoodAssociation the above is completely untrue and un-informed. CPTSD involves dissociative flashbacks that are emotional in nature rather than picture memories and often present as suicide ideation or abandonment fear. It’s a huge component of the condition. Look up Pete Walker’s guide to emotional flashbacks.

@Sillyquestion123 have you read books like The Body Remembers by Babette Rothschild (which talks about the care gap for CPTSD sufferers in the introduction) and Complex PTSD by Pete Walker? I’d recommend them. Also Waking the Tiger by Peter Levine and The Body Keeps the Score by Besel Van der Kolk.

I see you’ve already had private therapy, but was the therapist trauma informed and were they able to spot if/when you dissociate and take you deeper into emotional memories? The past emotions cropping up in the present might be where your trouble lies, so you need someone who can dig into that with you. I found that with a really good trauma informed psychotherapist but it has taken years and years of deep work.

It’s a massive problem that there’s not a clear standard of trauma training or visibility of qualifications and competence of therapists in this regard. There should be because it’s the root cause/bread and butter of everything clients come to therapy for. Really it depends on how deep the therapist has gone in their own work. I’d suggest looking around for someone different privately if you can.

Look up the NICE clinical guidelines there is a précis here: https://www.ptsduk.org/what-is-ptsd/nice-guidelines-for-ptsd/

These say what you should be offered - then go back to the GP and ask how they will support you in accessing the service you should be able to access - they could refer you to the National Centrehttps://slam.nhs.uk/service-detail/service/trauma-and-dissociation-service-280 or there may be a regional provider or a private provider who has an NHS contract they could refer you to under the Choice protocol - they can also do a referral to the local ICB for personalised funding.

Great post, @Hotflushesandchilblains , and this is exactly what's happening where I live.

MH services are in a dire state imo. I've had clients with a PTSD diagnosis who have been waiting >4 years for EMDR therapy, and it often takes a year or two to get assessed and referred for it. When they finally get it, it seems to be life changing for most, and often after only a few sessions, so very cost effective. If they have depression and/or GAD as well, these often improve immensely, too.

If the govt seriously want to get people off ill-health benefits and back to work, they should invest more in therapies like EMDR and in MH services generally so that people can recover more quickly.

You do need to have a proper assessment and treatment plan.

You can get that with qualified psychologist (rather than a counsellor or psychotherapist). It will cost more but they are qualified to diagnose conditions and come up with a treatment plan. Diagnosis is more based on your current symptoms rather than what happened to you.

The other option is to pay for a private psychiatric assessment for your symptoms. Psychiatrists deal more with medication than the therapy side of treatment. They will diagnose and medicate if deemed the right thing.

Pete Walker’s book on CPTSD is good if you’re looking for a comprehensive guide to the condition. DBT is a great therapy for emotional regulation skills (for when triggered or in flashbacks). EMDR is beyond miraculous for trauma.

I hope you get to move past this, as it sounds really horrid for you to be going through.

It’s crappy to put the blame on you and label you “too complex”. Dreadful. They should be honest and explain they don’t have the expertise to help you and you deserve more qualified therapists to help you heal. What a victim blaming way to treat people coming for help. I’m sorry you experienced that ❤️‍🩹

You cannot get referred to the National Trauma Centre unless you have been through your local 2nd care service and their current wait just for an assessment is of the order of 3 years and then another 2 for treatment. That’s a non starter for the severity of symptoms that the OP describes I’m afraid.

The GP will have done a triage with a PTSD scale. If she doesn’t fit the criteria for PTSD, they can’t refer.