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What is complex trauma based therapy? CPTSD

System
System Posts: 646

Scope community team

edited December 2021 in Mental health and wellbeing
This discussion was created from comments split from: Complex PTSD and no help available.
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  • grayling
    grayling Member Posts: 11 Listener
    edited December 2021
    Hi, I have been diagnosed with CPTSD, I've had it all my life and at the age of 54 I have finally had an assessment today for 'complex therapy' or 'complex trauma based therapy'. The lady who assessed me, said that the talking therapy, and CBT i have had in the past, were not the right type of therapy for my condition. I have had to jump through hoops to even get the assessment, and now i've been assessed I have to wait on a list for 12 months, before I will be seen. My psychiatrist has left my local hospital, and has not been replaced, so I have no support now. I just wonder why I have had to wait this long, and been given therapy that was not appropriate. I am now looking online, to try and find any information on what complex therapy or complex trauma based therapy is. My problem is, that I really have to search and search, as most web sites and online groups are for soldiers with PTSD. I was really happy to find this site. Does anyone know what complex therapy is, and how it is different from talking therapy, or CBT (which i found pretty much, to be a waste of both mine and the therapists time).
    Many thanks
    Gray
  • chiarieds
    chiarieds Community Co-Production Group Posts: 11,660 Disability Gamechanger
    Hi @grayling - I'm sorry that having been diagnosed with CPTSD you're now having to wait so long for treatment to begin. From what I can find, it seems that NICE (National Institute for Health & Care Excellence) doesn't as yet have any recommendations as to how this is best treated, so, perhaps unfortunately, why you may have had 'treatment' that has been thought inappropriate.
    I agree, that more research has been done on war veterans, some having PTSD, yet some with CPTSD, from looking on a medical database to try & find out more for you. Again, from what I've just found, the medical community have yet to agree as to how this may be best treated.
    In 2016 an international group of specialists thought that the then current treatment of CPTSD might be too conservative. Please see the abstract here: https://pubmed.ncbi.nlm.nih.gov/26840244/
    There's also a more recent paper (2020) looking at 'intensive trauma-focused treatment.' This was done as an in-patient for 4 days a week over 2 consecutive weeks. 'Treatment commenced without a prior preparation or stabilization phase and consisted of 90 minutes of individual prolonged exposure (PE) in the morning and 90 minutes of individual eye movement desensitization and reprocessing (EMDR) therapy in the afternoon,' as it was thought 'plausible that these treatments could enhance each other.' Please see the abstract here: https://pubmed.ncbi.nlm.nih.gov/33029323/
    Whether this is what the lady who assessed you meant may be helpful, I don't know, but this was quite a large study, & their results certainly looked positive. Further studies getting similar results will add to the knowledge as how best to treat this.
    Perhaps this may be a positive for you, as, whilst you're waiting for treatment, more may be learnt; I do hope so.
  • Alex_Scope
    Alex_Scope Posts: 864

    Scope community team

    Hi @grayling thanks for reaching out. To help you find some answers to your question I've started it as a new discussion. I'm so glad to hear you're happy to find the community :)

    I don't have much knowledge on the subject myself, so I've tagged your post as unanswered to help generate more discussion. If you have any further queries please do ask us, we're here to support you.

    Alex
    Online Community Coordinator
    Scope

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  • grayling
    grayling Member Posts: 11 Listener
    Thank you for your advice help and information. I will spend some time now reading the links posted. I have been struggling since I was a child, and have been bounced back and forth for so many years now, and pumped full of medication, that doesn't really do anything, apart from help me to get a couple of hours sleep a night. Having read a lot of post's on here, I can see I am luckier than most. At least I am being offered some treatment now, and hey, what's one more year waiting! I was just a little annoyed after my complex therapy assessment yesterday, that the Lady told me the medication, talking therapy and CBT, were a waste of time for someone like me. All the years of wasted time and money it cost for absolutely zero results,(apart from helping me with some grounding and mindfulness training to help with panick attacks). I went to Pete Walker's website yesterday after reading about him here yesterday. It was very informative. I also found a lady called Carolyn Spring, she has her own website, and lots of free resources, which was also very very good. She is a survivor of a horrific life.
    I can only hope that the treatment I am waiting for will help me. I really feel very lucky after reading all the awful stories of people being given no help at all because of funding, or lack of understanding. All I can say is that I hope that what i have written about, me being told that talking therapy and CBT, not being appropriate treatments for CPTSD, will hopefully help others to stand up for themselves getting the proper treatment.
    I called my assessor back this morning, for a little more clarity about complex therapy. It seems that it is a long term, 6 months or more, of concentrated trauma based therapy, including things like the eye movement resetting, and other things. I suppose I will have to wait for it to start, then i will be sure to come here and report my findings as it happens. Hoping to help others in finding the right treatment.
    In the meantime, I am just very grateful to have found this website. It really is very good. Thank you for welcoming me.
    Gray
  • chiarieds
    chiarieds Community Co-Production Group Posts: 11,660 Disability Gamechanger
    Thank you for replying @grayling - I'm pleased to read that you were able to contact your assessor for more clarity, &, from what I understand, such trauma based therapy + EMDR does seem like a positive way forward. It does indeed seem that CBT for example, isn't particularly helpful with CPTSD.
    This morning I admittedly scanned through a lengthy NICE document about PTSD as it was over 1000 pages long; overwhelmingly it said that there was low evidence of certain treatments & medication helping, & CPTSD was only very briefly mentioned. I was just checking to see if I could find anything further of relevance.
    It's good that you have written about your experience with CBT & talking therapy so far; this resonates with the medical info I found that those suffering from CPTSD had in fact likely had appropriate treatment delayed/denied rather than receiving evidence based treatment.
    I hope you find the links helpful. I've also looked at Peter Walker's website since you mentioned him, & have just started dipping into Carolyn Spring's.
    I hope you continue to find the forum helpful, & yes, it would be very good indeed to find out about your therapy when it starts; sharing information always hopefully helps others, which is what this forum is about. :)
  • grayling
    grayling Member Posts: 11 Listener
    Something else I think I should mention, is that it was not my GP who referred me for this treatment. Like many others before me, I developed a dependence on prescription codeine. Dished out to me like smarties for years to treat my arthritis. I am 9 years clean now, however still have chronic pain and was referred to the Pain management team in my area. It was this department who have had me jumping through hoops, and assessed me as needing some sort of psychological therapy. Even they said that It was more likely, i would only be offered talking/ group therapy or CBT, as complex therapy is only offered to very few, even though I told them, I had had many many courses of them before, that hadn't helped. Thank god I passed the assessment, and complex therapy have now taken me on.
    Although I am very glad to now be on their waiting list. I am still more than a little irritated by the fact I had to really insist that i get the assessment. The pain management team, like my GP, were trying to keep me from having this. An assessment by the way, that i scored maximum points on.
    So, yes it seems to me that there is very little understanding of CPTSD or the required treatment. It feels very much, like the front line professionals, really don't have a clue.
  • shadow66
    shadow66 Member Posts: 24 Courageous

    From reading through your posts, I'm assuming that it is EMDR you are waiting for?  If this is the case and it's on the NHS, the problem is that depending on where you live, experienced EMDR professionals are rather thin on the ground!  I received EMDR with a psychologist via my local CMHT and had to wait about a year to see her, so it's not unusual to have to wait this amount of time unfortunately.

    There are private EMDR practitioners, reputable ones can be found via the Counselling Directory; but it is expensive and I appreciate not everyone can afford to go private - and you do need to make sure they are registered with an official body such as the BACP or the EMDR Association, as EMDR delivery by someone untrained can do more harm than good.

  • bekindalways
    bekindalways Member Posts: 134 Courageous
    Hi, I've have underwent EMDR and I'm on a pause atm as it's tough going.  But it does lessen the impact of the flashbacks and triggers in respect of the issues I processed.  I'm very lucky that the door is always open to me to go back to it when I am ready.  Mine was 2 hrs, each week for many weeks. It has helped me a great deal, but there's still much for me to process as my situation involves a number of traumas over many years, with each needing to be processed individually. 

    It is certainly worth trying. It's a terrible frightening illness and my kind thoughts are with you. As I said, EMDR is really tough going and you'll have to work on things in between because you'll be reliving one of the traumas. Your psychologist will discuss everything with you over probably a couple of sessions and then try the EMDR. 

    Good luck, I just wanted to let you know that I've done it and will be going back to it in the Spring, because for me, it is worth the effort.  

    Sadly CBT (and I don't have any evidence of its efficacy, or adverse results) wasn't any use to me. With CBT, it's all about being in the here and now. With PTSD and CPTSD, it was impossible for me to not go back over. I can't just move on because it turns out my brain hasn't actually fully processed the traumas yet. (I paid privately for CBT.... and it didn't work) in fact I was worse off than when I started. That's not to say that it can't work for others. It's just my own experience of CBT. 

    The importance is getting a Psychologist who understands the complexities of (C)PTSD and what treatments may work with each individual.

    I do so hope you are as lucky as me to have a great Psychologist. My very best wishes. @grayling


  • Daniel_2021
    Daniel_2021 Member Posts: 63 Courageous
    chiarieds said:
    Hi @grayling - I'm sorry that having been diagnosed with CPTSD you're now having to wait so long for treatment to begin. From what I can find, it seems that NICE (National Institute for Health & Care Excellence) doesn't as yet have any recommendations as to how this is best treated, so, perhaps unfortunately, why you may have had 'treatment' that has been thought inappropriate.
    I agree, that more research has been done on war veterans, some having PTSD, yet some with CPTSD, from looking on a medical database to try & find out more for you. Again, from what I've just found, the medical community have yet to agree as to how this may be best treated.
    In 2016 an international group of specialists thought that the then current treatment of CPTSD might be too conservative. Please see the abstract here: https://pubmed.ncbi.nlm.nih.gov/26840244/
    There's also a more recent paper (2020) looking at 'intensive trauma-focused treatment.' This was done as an in-patient for 4 days a week over 2 consecutive weeks. 'Treatment commenced without a prior preparation or stabilization phase and consisted of 90 minutes of individual prolonged exposure (PE) in the morning and 90 minutes of individual eye movement desensitization and reprocessing (EMDR) therapy in the afternoon,' as it was thought 'plausible that these treatments could enhance each other.' Please see the abstract here: https://pubmed.ncbi.nlm.nih.gov/33029323/
    Whether this is what the lady who assessed you meant may be helpful, I don't know, but this was quite a large study, & their results certainly looked positive. Further studies getting similar results will add to the knowledge as how best to treat this.
    Perhaps this may be a positive for you, as, whilst you're waiting for treatment, more may be learnt; I do hope so.
    @chiarieds

    Hi,

    Can I just thank you for such a detailed response. It's clear the amount of research you have done to help someone you don't know purely out of the kindness of your heart, it's really rather beautiful.

    I have CPTSD and I'm on a +12month waiting list, like everyone else i'm not too sure what makes the PTSD complex or treatment required. Reading some of the responses on here has shed some light.

    I think this is probably one of the best threads i've read on this site, it has truly involved people trying to help one another, like I said, simple yet beautiful.

    Thanks @chiarieds

    Daniel 

  • chiarieds
    chiarieds Community Co-Production Group Posts: 11,660 Disability Gamechanger
    Hi @Daniel_2021 - you are as ever very kind. It's great that so many people have responded on this thread giving their insight, & @grayling has said that they will let us know what they find out when treatment starts.
    As I said above, ''sharing information always hopefully helps others, which is what this forum is about.''
    I'm sorry you too are on a long waiting list. I hope you are keeping well, & simply, 'thank you, Daniel.'

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