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Complex PTSD and no help available

wildlifewildlife Posts: 1,316Member Pioneering
edited July 2017 in Mental health issues
I need some advice please. I have been under the mental health services for years after experiencing many traumatic events throughout my life. I recently had an assessment done by the local IAPT service who said they couldn't help as my problem was outside their expertise. They wrote to my GP who I went to see expecting to be referred to a different mental health service. She said she would make some enquiries and get back to me. She rang today to say there was no funding available and that my only option was to go private. I cannot believe that is my only choice. Apart from wanting help to overcome the way this condition limits what I can and cannot do, I also need a diagnosis in writing for benefit purposes, which I have so far not got as the letter IAPT wrote did not suggest any diagnosis. Even though I was told verbally during the assessment that I have Complex PTSD. Can you suggest any way I can move forward without having to pay a fortune for the long term councilling treatment I've been told I need.  
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Replies

  • wildlifewildlife Posts: 1,316Member Pioneering
    edited August 2017
    @Sam_Scope Hi Sam or anyone else who can help. When is the Mental Health advisor next due online, please ?
  • jose2jose2 Posts: 126Member Pioneering
    Hello @wildlife,as you I suspected I have suffered with and from CPTSD,I saw a psychiatrist about 5 years ago ,who was supposed to only see me for 6 sessions but then gave me 10 sessions of CBT,it took 18 months to get referred,wanted me to go into group therapy,this I did,but he realised that I needed one-to one CBT,when I saw him alone and on the first appointment I asked him if he had done his own therapy of his family of origin as I seen other councillors etc over the years ,and they either did not validate me or even at times were condescending and I have refused to see them again and even walked out on one so called councillor.I have even paid to see a councillor ,that was a load of money down the drain.
    I have not been given a diagnosis of CPTSD,though I know I have it .I have just finished reading a book by Pete Walker on this subject ,now I really understand what has been wrong all these years.It is a really enlightening book .
    I just went to my GP years ago and just asked to see a psychiatrist as I thought I just had PTSD,my Gp at that time didn't hesitate to contact the relevant people for me.
    What are the protocols concerning NICE and funding  about seeing a long term councillor or psychiatrist in your area ?,
    I had a very personal letter given to me when I was seeing the psychiatrist about my life,and what I was going to do was hand it to the tribunal clerk at my PIP hearing,though it never came to that as I was awarded my PIP enhanced reinstated after a letter to ATOS medical team and my MPs help.
    @jose2  




       
  • wildlifewildlife Posts: 1,316Member Pioneering
    @jose2 thank-you so much for your reply. My GP rang me at home after seeing her last week and asking for a referral. She said there was no funding at present for anything other than IAPT who only deal with much milder mental health issues. Mine go back years and are very deep rooted. The only thing she could recommend was private councilling at £46 an hour which I refuse to pay for. I've not heard of NICE but will investigate. I was going to ring MIND and Rethink Mental Health next week to see if they could help. I thought mental health treatment was getting better not worse. Am not at all happy with being left in limbo. Thanks again x
  • jose2jose2 Posts: 126Member Pioneering
    @wildlife,gosh thats a lot of money @ £46 per hr,and what if the person your paying for does not specialise in CPTSD,as it says its COMPLEX.
    Forgot about MIND,that would be a good place to start ,they know all the ins and outs and who could put you in touch and specialises into this disorder.
    I had this trouble with asking for help with my lupus years ago,the GP said there wasn't a rheumatologist in my area or hospital ,so I went on the lupus site and spoke to a nurse ,who gave me the name of a lupus rheumatologist ,said he had worked in my area for years.Its not good when you have to do your own detective work and then inform your own GP that you have a name and would like to see them .Don't give up! and all luck with this    
  • wildlifewildlife Posts: 1,316Member Pioneering
    @jose2 I'll do some investigating next week and see what I can find. It's not good when GP's don't know who to refer you to. Where are all the psychologists and psychiatrists working for the NHS, I can't believe there aren't any in my area. IAPT have discharged me and apart from the help I need DWP will assume I have no problems if I don't stay in the system. 
  • MatildaMatilda Posts: 2,616Member Disability Gamechanger
    I'm lucky living in London as there are several large teaching hospitals though not all have departments in all specialisms.

    A lady I know has been treated for lupus for many years at a London teaching hospital.

    Unfortunately if someone lives outside one of the major cities they often have to travel a long distance to access a specialist department.
  • wildlifewildlife Posts: 1,316Member Pioneering
    Just a quick update. I've ring the local mental health team who told me the same as the GP that there is no free treatment for longer term support for PTSD. I also rang MIND who do a free initial assessment but after this there is a small charge as they are a charity. However they don't do any paperwork or contact the GP so no evidence would be available for DWP in the future. I then rang IAPT and am waiting for a call back to ask if I can go on a list for any funded treatment that becomes available. I will also ask if I can have something in writing to confirm the diagnosis of Complex PTSD that I was given verbally during my last session with them. I am not at all happy that I have to find my own treatment and that there is no free option. How many people with serious mental health difficulties are being neglected, many of whom will not be able to find help for themselves. It's just no good enough.
  • LiamO_DellLiamO_Dell Posts: 1,114Member Pioneering
    Hi @wildlife,

    I'm sorry to hear about the problems you're having - it certainly does sound like a stressful time.

    @RebeccaMHadvisor, can you help?
    Liam
  • ChristabelleChristabelle Posts: 3Member Listener
    Do you not go on the care programme approach CPA and have a Care Plan drawn up for you with your local mental health team when you have CPTSD. I have been diagnosed with Functional Neurological Disorder by my Neuroligist due to Siezures and Blackouts brought on by the Trauma manifesting itself physically. I am also struggling to get trauma based CBT. I will not give up.
  • wildlifewildlife Posts: 1,316Member Pioneering
    edited August 2017
    @Christabelle A CPA has not been mentioned so I really don't know what to do. Hope someone on here can help as there must be free treatment surely. I'm in the Salisbury area and that's a large city with a hospital that's just announced a 3 million pound improvement programme and that's not for structural alterations to the building itself.  Am still waiting for IAPT to contact me and maybe they'll take me back on for the time being. 
  • ChristabelleChristabelle Posts: 3Member Listener
    I live in Derbyshire area. When you get chance ask about (CPA)  did your psychiatrist diagnose your CPTSD you can google ( CPA ) so many cuts to the services.i hope you get the help you need and the clarification of your diagnosis soon.
  • wildlifewildlife Posts: 1,316Member Pioneering
    @Christabelle, It was diagnosed after an hour long assessment at IAPT but the lady I saw knew me well as I'd had CBT treatment from her in the past. I will google CPA but don't hold out much hope if GP and Mental Health Team don't know it's available in my area it probably isn't.
  • wildlifewildlife Posts: 1,316Member Pioneering
    edited July 2017
    Getting somewhere at last. I rang PALS and was told about the Primary Care Liaison service? I was advised to ask my GP for a referral but need the exact information. I think they come under the Avon & Wiltshire Mental Health Partnership. @RebeccaMHadvisor can you help with what I need to ask for and why have I had to find my own treatment. Am not happy about this.. 
  • RebeccaMHadvisorRebeccaMHadvisor Posts: 99Member Courageous
    Hi @wildlife

    I'm so sorry I haven't been on line for the past few days but the one thing I love about this community is the way everyone rallies around and supports each other.

    I completely agree with you that you should never have to find your own treatment and do the research that you are currently undertaking. However, due to the way the NHS is funded we are in a 'lottery' situation and I regularly write to the Department of Health and Jeremy Hunt MP about this very issue. Mental Health services are stretched across the country and your struggle to find the support you need and rightly deserve isn't uncommon but I know that this doesn't help you right now.

    Can I ask if it is your GP who is asking for the information on the Primary Care Liaison service? This link will give some information that your GP should find useful. From what you have said I think that Fountain Way, Salisbury - Sarum Primary Care Liaison and Memory Service (01722 820100) will be your closest but your GP should be able to make a referral from the information in the link.

    Have you had a look at the Rethink website? There are some support services that are listed on here, however in my experience it is again a 'lottery' or services and some are very strict as to who they are able and not able to support for funding purposes. Some of them may not offer the documentation that you need for the DWP but they are able to support you and perhaps give you advice in how to get the correct documentation needed.

    What you are going through is clearly stressful and frustrating and it sounds as though you are very focused on getting the help you need but please remember to look after yourself.

    Rebecca

  • wildlifewildlife Posts: 1,316Member Pioneering
    @RebeccaMHadvisor Hope you're still online. My GP has not mentioned Primary Care Liaison, as I said, she could only refer me to a Private Councilling service which doesn't even sound as if it would meet my needs. I just need clarification as to who to ask my GP to refer me to. When I see all the info. you've given me my head spins. Sorry. My GP is very good with me but won't take telling from me who to refer me to. That is my problem. I may have to see a different Doctor. Can I ring the number you've given me and are they part of the IAPT service as they have discharged me though I am waiting for a call back from them.  
  • RebeccaMHadvisorRebeccaMHadvisor Posts: 99Member Courageous
    Hi @wildlife

    I completely agree. It makes my head spin at times. It sounds as though your GP isn't very experienced perhaps. I have had dealings with GPs who really do try and be supportive but have just ended up confusing the situation and doing the exact opposite of what they were trying to do.

    Clearly the support your GP is trying to give you is not the right support and other options need to be either explored, or your GP needs to talk to you about why these options are not options.

    I think you perhaps have two ways forward. The first is to ask to see a different GP explain the situation, explain the support being offered to you and the reasons it isn't right.

    On this chain alone there are lots of links and things people have suggested as well as the support you have both found through your own research and the support discussed other agencies and this might confuse the issue. I would start by just giving the GP this link - http://www.awp.nhs.uk/services/community/primary-care-liason/

    This details all the information they will need about the liaison service. They will know the area that covers them and will be able to look at the options.

    The other thing you can do is to write a letter to your practice manager at the GP surgery saying the same thing. The receptionist will be able to tell you who that is or you can just address it to 'The Practice Manager'.

    In terms of the Rethink website I have given you. There are 16 pages of support there but it is in alphabetical order and not location or type of support. Try not to get overwhelmed with it. Sit down with a cup of tea and give yourself time to flick through it. You will dismiss most of them as they will be in the wrong location or not be the right type of support so 16 pages very quickly shrinks into a more manageable list.

    By all means ring the number and ask for their advice, I don't think they are part of the IAPT service but to be honest I'm not sure of the structure. 

    I hope I have been able to be a little more focused with where to go next.

    Rebecca
  • wildlifewildlife Posts: 1,316Member Pioneering
    @RebeccaMHadvisor I am back to square one. I had a phone call from IAPT today that made all the other options you suggest pointless. The Primary Care Liaison Service is part of IAPT and they have spoken to my GP about the unsuitability of this service in meeting my particular needs. It appears that as I need long term treatment and support for a very complex set of issues there is no funding available at the present time. IAPT are also not willing to put any diagnosis in writing, despite telling me verbally that I have Complex PTSD. I don't think seeing another Doctor would change anything as every option for a referral arrives at the same place in Fountain Way. I will ring PALS again tomorrow just to voice my dissatisfaction. In the meantime I have been put on a waiting list of people with similar needs for when funding becomes available. If this does not change before my PIP review in July 2020, if I'm still here by then, I know DWP will not accept I have a mental health problem. I am being penalized for it being so bad. How crazy is that. I may have to pay for a Psychiatrist just to get a proper diagnosis and just wait for treatment under the NHS sometime in the future.  
  • MatildaMatilda Posts: 2,616Member Disability Gamechanger
    @wildlife

    Annoying though it is, if you can afford it, it might save a lot of time and hassle if you refer yourself to a private hospital that takes direct patient referrals and get the diagnosis you think you should have.  Nuffield Private Hospitals (and I dare some other private hospitals) will accept direct patient referrals and will give you, as long as you ask, a list of costs in advance.
  • wildlifewildlife Posts: 1,316Member Pioneering
    @Matilda Thank-you so much for your suggestion. I will certainly look into it but it sounds very expensive. It appears that if I had a mild case of anxiety and/or depression and wasn't bothered who I saw or how often the councillor was changed for someone else I would get free help. Especially if the prognosis for recovery in the short term was good. Or if I was a danger to myself or others I would also get help. But as I am; unable to live a normal life even to do the things my physical limitations would allow because things I've been through have left me with many phobias that only affect me and the person closest to me I cannot get help. There's something not right about the mental health services in this country. I say that because I have family in New Zealand and I lived in France for a few years and mental health in both these countries is given the same priority as physical. But then there is no NHS.
  • MatildaMatilda Posts: 2,616Member Disability Gamechanger
    @wildlife

    Would depend on how many consultations you would need.  If you'd only need one to get a diagnosis, cost would be a few hundred pounds.
  • RebeccaMHadvisorRebeccaMHadvisor Posts: 99Member Courageous
    Hi @wildlife

    I am really sorry to hear that. I think that speaking with the PALS service is important. I know that this won't change your situation but it is important that the NHS receives feedback.

    I am wondering if you have also considered speaking with your MP. You can either write or email or they will also run surgeries usually once a month where you can go a long and meet with them to talk about the issues.

    Rebecca
  • wildlifewildlife Posts: 1,316Member Pioneering
    edited August 2017
    @RebeccaMHadvisor Thank-you yes I will ring PALS and notify my MP. I have the reassurance that I am on a list for further treatment and I have 3 years before my next PIP review so, hopefully by then there will be some treatment available. I still can't accept that I can't have one assessment by the Primary Care Liaison just to make a diagnosis. I will continue to press for this as time goes on. Thanks once again..  
  • wildlifewildlife Posts: 1,316Member Pioneering
    edited December 2017
    @RebeccaMHadvisor 
                                           To bring you up to date, I rang PALS again and after making some enquiries I was advised to ask my GP to apply to CCG a panel who sit every so often who have access to special funding for people who can't get treatment under the NHS in the normal way. I have asked my Doctor about this and she said she could try but doesn't hold out much hope as there are others with similar problems. I replied "What, with 40 odd years of Trauma?". She was very interested in how I'd found out about this option and I don't think it would go down too well if I contacted my MP. As she is good with me about other things and even about my mental health apart from this I don't want to spoil our relationship. However I've been getting worse lately and having trouble controlling panic in particular which is horrible, when I ask myself why, I know it's because I don't have mental health support I can call on if things got too much. I want to get better and still can't understand why someone with a worse case of CPTSD than most other people, which appears to be the situation I'm in, should be denied help when milder stress and anxiety symptoms are catered for with no problem. It's like treating someone with a cold and telling someone else with cancer there's no funding. It doesn't make sense. 
  • RebeccaMHadvisorRebeccaMHadvisor Posts: 99Member Courageous
    Hi @wildlife

    Thank you for the update and I am sorry that you are still not getting the support that you need and deserve to have. It sounds as though things are still very difficult for you and I understand the predicament that you are in. Whilst your GP is supportive of you it is important that you get the help you need.

    I think that the fact that she is willing to try is a good thing and perhaps in speaking with your MP you can express the support your GP is offering and that the help you are requesting is focused on the panel and not her?

    I hope that the panel works out for you

    Rebecca 
  • wildlifewildlife Posts: 1,316Member Pioneering
    edited August 2017
    @RebeccaMHadvisor Thank-you for your support. I will wait and see what happens with the panel and if I'm turned down I'll contact my MP as I really do need the help. I'm reading an e book "The easy way to Handle Anxiety" by Johnnie Montoya. It's about being in control of it rather than the other way round, changing thoughts from negative to positive and focussing on the actual present moment. Any techniques I've been given in the past weren't so much about stopping it happening but trying to get out of it, or over it once a full blown panic attack had begun. I have been trying these techniques but it's really hard to do as I am 66 and it's like changing the habits of a lifetime but I know if I don't there will be situations in the future I just won't be able to handle. The main one being if I lost my husband as he is never far away and when he's out I'm looking out of the window for him coming back. Anyhow I will practice what I've read about as it makes sense and hopefully it will stop thoughts of what I went through in the past coming into my head, or should I say I will be able to stop them.
           Thanks again, Pat x 
  • RebeccaMHadvisorRebeccaMHadvisor Posts: 99Member Courageous
    I will check that book out @wildlife
  • [Deleted User][Deleted User] Posts: 0 Listener
    Hello, I've read your story, and I'm in the same situation! I was diagnosed with complex PTSD and I too cannot find help. I am under the local mental health team, yet they are useless! The situation there has gone from bad to worse! 
    I sought a private psychiatrist who deals with this condition, however at £180 for half an hour was getting quite expensive. At my second visit to him, I told him I didn't want to start something I couldn't finish. He promised he could help, so I saw him five times, then I decided a just couldn't afford it. He then suggested I pay towards the hire of the room and he would continue seeing me. I said yes as long as it wasn't £180. Then I get an email of his secretary saying it would be too complicated to see me this way, and that I should find a local counsellor to OFFLOAD, as I didn't need to see a psychiatrist! I was disgusted with her an him! I'd traveled an hour to Warrington to see him and didn't claim traveling expensive , and for them to offer me a compromise which then is withdrawn, left me feeling rejected! So I'm now back to square one! Plus I've added another trauma to my very long list of traumas!
    why the hell to these so called professionals diagnose people with a condition that there is no treatment for? Why is there no help for us? So,diets get help with PTSD , yet civilians with the complex condition get nothing!
    ive googled for months to find someone to help, I've tried to remain strong and put on a front for family and friends, but I'm dying inside! My physical health is getting worse too which also impacts on my mental health, yet I'm left to deal with my feelings on my own! I can't talk to my sons even though they are adults, they just wouldn't understand. Now I'm sad to say, that ever time I go for an operation, I hope I don't wake up! I feel really bad about saying that, and I know that there are people in this world a lot worse off than myself, but that doesn't help me in my situation. I know everyone has their struggles and difficulties, but we all seek help from another person, all living in the hope for a happier healthier life!
    i don't have proper mental health support because there is a shortage of psychiatrists and nurses. I'm having to rely on my sister who is my first port of call, but she lives in Manchester. So my two friends have been a great help. Unfortunately when I'm on a downer, they are stuck as to what to say to me!
    so if @wildlife has any suggestions I'd be grateful, or anyone else for that matter?
    thank you for taking the time to read this, sorry it's been so long.
  • Pippa_ScopePippa_Scope Posts: 5,856Member Disability Gamechanger
    edited December 2017
    I'm so sorry to hear about your experience [deleted user]. 

    I know it's not the same as seeing a psychiatrist, but if you do need to talk to somebody about what you're going through, The Samaritans really do offer a great service. They're always reachable at 116 123 or [email protected]

    I also hope you know that you can talk to the Online Community at any time and we'll do our best to support and advise you.
  • chefdavechefdave Posts: 8Member Listener
    Hi i have cptsd started when i was 1st on scene of what turned into a fatal accident. Which triggered very deeply buried memories of sexual abuse in school. When my 2 yes 2 shrinks said there was nothing more they could do. Told me meds im on could kill me seratonin symdrome) see a nurologist and see you next time. I threatren to kill every pedoifile i could find. Got picked up by police and charged with threatening beheivour. Police where very nice and helpful. Since then shrinks have assigned me a cpn and got me to top of list of an nhs ptsd/emdr expert. Also aaid i am very deeply traumatized. Will now have a crimial record to get treatment i despeatly needed. Why is system so broken.
  • [Deleted User][Deleted User] Posts: 0 Listener
    @chefdave. I can understand where your coming from. Unfortunately where I live the mental health team don’t have a regular psych, they have to keep getting locus in to cover.
    also my team have never gone down the route of complex ptsd, And to be honest they wouldn’t know where to start! They’re absolutely useless!
    as for your suggestion @pippascope of the Samaritans , well what can I say??? I rang them up regularly at one time, but you get a different person every time , hence you have to repeat why you feel like you do.
    i rang once and started telling this guy why I was feeling the way I did , and he stopped me mid sentence and said ‘ is there a point to this story?”
    i was disgusted !!! And since that night I’ve never rang Samaritans again.
    i do feel desperate at times. I’m not on any medication as I came of antidepressants 7 yrs ago after being on them for 27.!
    to be honest, as mental health is an umbrella term, nobody can understand how the brain really works. We are all different, who is normal? What is normal? We all react differently to what’s going on around us. We look at each other and wonder what that person is thinking, where they’re going and possibly what they’re having for tea?
    But when a person has had trauma and abuse since the age of 5, how can someone ‘ treat’ that person when they’ve not gone through it? How on earth can they understand?
    i was raped by Ian Brady when I was 8 yrs old, I never spoke to anyone other than my mother that night, until I was 14 yrs old!!!! I hate myself that Leslie Ann died months after, Why then I question am I still here???
    then I try and seek help from my so called mental health team and they ignore me.! They don’t help, why? Because they don’t believe me!!!!
    then to add insult to injury, they go and dump that horrible mans ashes in the sea where my beloved husbands were put! I really cannot come to terms with it!! 
    Move had many traumas in my life since then, but how the hell can anyone help me get over this if they didn’t experience that horror as an 8 yr old to the most notorious fiend that ever lived ???
    ive even emailed those counsellors called the speakmans and asked them if they can help? But you know what. I’ve not heard a thing!! Obviously they just want TV fame?
    im very bitter, very hurt and very angry! So I’m left to deal with my feelings. I’ve self harmed in the past, taken overdoses and got absolutely drunk to try and blot everything out.
    no amount of pills are going to help. I’m told that complex ptsd is not a recognisable condition , only ptsd is?
    seemingly they’re still researching the complex part?
    so I’m sorry if I’ve upset anyone with my story, but Samaritans don’t help and I’ve tried other organisations of adults being assaulted in childhood. I’ve got a rod to bear, a heavy weight on my shoulders and no one can help!
    note to @pippascope , could you please delete my membership as I can’t gind a way to do it. I’d be most grateful
  • AlexAlex Posts: 1,325Scope Team Scope community team
    edited December 2017
    Hi [deleted user],

    I will email you about deleting your membership.

    Thanks,
    Alex
  • PatrickCamPatrickCam Posts: 1Member Listener
    This thread is really sobering to read, and itself quite a document on the state our our national response to CPTSD. 

    I myself have been told I have CPTSD by a local psychoanalyst, but have been told by the mental health team that they don't like to do an official diagnosis without offering a suitable therapy, which isn't helpful for an ESA claim.

    Perhaps a bit more connecting up is needed here by authorities. To be honest we probably need a new Minister to oversee mental health, and trauma specifically.

    The main thing not happening yet is everyone feeling they will be cared for and not lost through the net when they have complex trauma which is difficult to treat.
  • WaylayWaylay Posts: 875Member Pioneering
    I was diagnosed with Borderline PD about 7 years ago, but it never made sense to me - it didn't"t fit. I was told that I could accept a referral to the BPD Community Programme (Lifeworks), or be classed as non-compliant and discharged from the Trust. I knew that without some kind of care I'd end up dead, so I went to Lifeworks.

    It gave me somewhere to go, social inclusion, other service users to talk to, informal interactions with staff, a 24hr telephone/face-to-face open crisis clinic, a kitchen, "art room", tiny garden, cards and boardgames, exercise balls, a really dodgy billiards table, and help with housing, benefits, etc. There wasn't any therapy (I got 10 hours) or psychoeducation, but it was helpful nontheless. I went whenever I could, and the Service even paid for a taxi if my back went into spasm while I was there. I was supposed to get a care coordinator and a care plan, but that never happened.  I did find it useful, as before that I'd been almost completely isolated. 

    Then, in 2014, they gave us 2 weeks notice that the service was closing (to save money), and we'd all be discharged to our GPs. There was disbelief, panic, fear, anger, and a lot of self-harming. They were transforming the service to focus on the locked 10-bed BPD ward at the hospiral, and to provide Mentalisation-Based Therapy ("evidence-based", with measureable targets, for new patients. "Crucially, none of the 80 service-users from Lifeworks would be accepted into the therapy programme for 2 years, as it would be hard to fit us into the statistics.  
    It turns out that they hadn't done any risk or equaltyi assessments, hadn't consulted with service-users, families, or other stakeholders (GPs, the hospital, the crisis team, community services, A&E, the police, ambulance services...) They'd basically just written us off, knowing that a lot of us would get worse, and a few would probably suicide. We were the old toys, and they dumped us so they could focus on their shiny new toys.

    This was unwise of them. Callously abandoning 80 people who are extremely sensitive to abandonment, convinced that nobody cares about them, and liable to outbursts of anger.... What did they expect?

    Apparently they didn't expect us to take over the building on the last day, barricade ourselves inside, maintain a constant presence of at least 4 people in the building at all times for the next 4 months, and make an enormous amount of noise and publicity about the whole thing. People dropped food and money off for us, signed our petitions, came along to our demos, etc. GP's, A&E, crisis services, the police (who we informed of the situation - the Trust hadn't bothered) supported us, wrote to the newspapers, joined us on local radio, etc. Unite, Unison, and the TUC helped us to organise, gave us access to lawyers and people who understood the regulations, got us in more newspapers and on TV. The BBC filmed us twice (http://www.bbc.co.uk/news/uk-england-cambridgeshire-28079396), our MP came to see us and gave us his support, mental health organisations across the UK contacted us on social media and spread our story, and 7 of us went to Parliament and met with the Shadow Health and Mental Health Ministers. 

    The Trust threatened to send the police in (oh yeah, so they could be filmed forcefully removing a bunch of mostly-female, mostly-disabled, mentally ill service users from a Trust building - when we pointed that out, they backed off). They worried about health and safety, so we got the fire department to come and inspect us. They threatened to sue us for trespass, and we looked at them and laughed - almost all of us were impoverished benefit claimants. 

    Eventually we discovered that the Trust hadn't bothered to do a risk assessment, an equality assessment, or any kind of consultation. We reported this to a regulator, who called the Trust onto the carpet, gave them a serious dressing down, and instructed them to do the assessments and to work with us to reach a compromise. They eventually agreed to continue Lifeworks for 5 more years. 😁

    They've been slowly draining resources, time, money and staff from us for a few years, we don't have much time left, and none if us who participated have gotten any services since the agreement, but we're all really proud. 

    And then I found out about
    C-PTSD, and was instantly sure that I'd been misdiagnosed. Asked my pain psychologist, my psychiatrist, my (charity) counsellor, and my (charity) group therapy facilitator, and they all said something like, "OMG yes obviously!" So I've been rediagnosed, only to find that there isn't any treatment available on the NHS here, and the CCG won't pay for me to go elsewhere. 

    My psychiatrist pointed out that BPD therapies often work fairly well for people with C-PTSD, so I was
    re-rediagnosed back to BPD, and hmy psych referred me to the BPD therapy programme. It's been 8 months now, and everyone else on the waiting list has started their treatment. I'm pretty sure that I'll never get treatment from the Service. :/ It isn't even provable, so making a complaint won't help. Grumble. I'd still do it again. 😼

    My counsellor is trauma-informed, we click really well, and she sees me for £10 a week, but she doesn't know much about treating C-PTSD. She is the one who has helped me to be able to identify the abuse, neglect, and trauma woven through my life from the age of 3 (~40 years, like you). There's rather a lot of it. It's not that I repressed it, or forgot it; I just put it away in a dusty corner of my mind and didn't think about it for years. However, losing my whole life when I became disabled; caring for my Surrogate Mum through an illness that was finally diagnosed as terminal cancer days before she died; having to cut my abusive Dad out of my life; being drugged, taken from the wake I was at, and raped multiple times; becoming homeless; and the constant churn of applying for benefits, being reassessed, losing my benefits, fighting back, racking up debt, dealing with the DWP's staggering levels of incompetence, and dehumanising lack of interest in what it does to use, waiting for Tribunal, getting my benefit back, and then waiting for that next brown envelope

    Our interactions with the DWP could have been created for the express purpose of retraumatising claimants, a population who are highly likely to have experienced multiple past traumas. 

    A prolonged experience which is very stressful, frightening and/or distressing, involves danger to health or life, no escape from situation, caused by humans
  • WaylayWaylay Posts: 875Member Pioneering
    My last comment was rather poorly written, sorry!
  • lavernelaverne Posts: 1Member Listener
    I joined this group specifically to get help with c-ptsd....... i must say, i'm very disheartened by the experiences of others re getting help. It's so hard to talk to anyone about this condition..... you can see their eyes glaze over as they fail to realise that this condition is most likely caused by people who have a very negative mental health condition themselves and we are the recovering victims of psychological injury and it's not something we've conjured up in our heads. 
  • JeremyJJeremyJ Posts: 35Member Pioneering

    Hi everyone - firstly for all those CPTSD suffers on here I'm very sorry for what happened to you in your childhoods then left you with your condition. I was recently diagnosed in May - have had various therapies for depression/MDD etc in the past, none have worked. Since my diagnosis I feel  my recovery is starting to begin (at age 50 and at the cost of my marriage). There is some very good literature out there - google Pete Walker CPTSD, his website and books are brilliant. As well as therapy he recommends 'bibliotherapy' - books to help you understand the condition. I would also recommend 'the body keeps the score', 'healing the shame that binds you' and the 'the drama of being a child'. The first steps which can be guided by a therapist, are to work in silencing the toxic critical voices (internal and external) and then to move to being able to re-parent your younger self. It sounds a bit odd but it does work - I was abused by both parents (sexual, physical and mental), a doctor, priest and bullied at school. I can now link some of my emotional flashbacks to specific events in my childhood - so those disassociated lost feelings you have, are the legacy of coping strategies as a child.

    Recovery is a multi-facilitated approach - unfortunately I don't have a loving supportive/understanding partner. So I've built my own network, therapist, friends and none-triggering family, plus yoga, exercise, reading, mediation. it's a lot of work but I do feel different and you can feel and think differently (I can recommend cd/s apps by Mark Grant - good for night time listening when struggling with sleep).

    There's an absolutely dearth of understanding and support for what is probably one of the most widespread mental health issues in the country and all a consequence of poor parenting.

    Some support groups would be really helpful and this is what I've been looking for.

    Just to finish - above is my experience and what is working for me. Best wishes to everyone.

  • Pippa_ScopePippa_Scope Posts: 5,856Member Disability Gamechanger
    Welcome to the community @JeremyJ, and many thanks for sharing your experience with us!
  • Pippa_ScopePippa_Scope Posts: 5,856Member Disability Gamechanger
    Welcome to the community @laverne, I hope today is as kind as possible to you. I wonder whether @RebeccaMHadvisor could offer any input here?
  • azalight90azalight90 Posts: 6Member Listener
    Hi I hope everyone is ok. My advice would be to try getting care and services the normal way. Through GP and referral to mental health services. If this does not work out then the best thing to do is to (in my opinion) contact PALS and lodge a formal complaint. Making sure that it is a formal compliant and that you know what you want the outcome to be. It could be an apology or access to the correct psychological therapy. If this official complaint does not have the desired outcome then this can be taken forward to the Parliamentary and Health Service Ombudsman. They can then perform an investigation and make sure that issues are resolved. However the investigation could take up to 12 months. Word of warning the ombudsman is free but their decision is final. By going to the ombudsman you are not able to sue the NHS should you wish to do so at another date.   https://www.ombudsman.org.uk
  • littleruthie123littleruthie123 Posts: 460Member Pioneering
    Hi over just been diagnosed with this also and agraphobia.been waiting about 2 years for support .been told I will need alot of therapy .and get did say only a certain amount with NHS. I'm very grateful for this though .I don't understand why funding is just disappearing fir everyone .and some altogether by the sounds of these posts .really don't understand what they expect people too do map art from have a nervous breakdown. I hope you've managed too assess some amount of support at least 
  • azalight90azalight90 Posts: 6Member Listener
    Hi over just been diagnosed with this also and agraphobia.been waiting about 2 years for support .been told I will need alot of therapy .and get did say only a certain amount with NHS. I'm very grateful for this though .I don't understand why funding is just disappearing fir everyone .and some altogether by the sounds of these posts .really don't understand what they expect people too do map art from have a nervous breakdown. I hope you've managed too assess some amount of support at least 
    Hi have you managed to get support?
  • littleruthie123littleruthie123 Posts: 460Member Pioneering
    Hiya yes find out next week. I've had a 3 week screening with a mental health doctor .been a long wait but yrs should be getting something. I will no more on Tuesday 
  • azalight90azalight90 Posts: 6Member Listener
    Fantastic. I hope you can get the right care that you need and deserve. 
  • littleruthie123littleruthie123 Posts: 460Member Pioneering
    It's been a hell of a long time .flash backs go back years .the last straw in my case was a breast cancer diagnosis which has tipped me over the edge .don't think I could handle anymore. I really hope you get some joy urself and thank you 
  • azalight90azalight90 Posts: 6Member Listener
    I am glad they are finally helping. I am only commenting as I was able to support my Girlfriend to get the care she needed and deserved. It took a formal complaint for the services to get scared and offer therapy ASAP. 
  • littleruthie123littleruthie123 Posts: 460Member Pioneering
    Ridiculous isent it 
  • azalight90azalight90 Posts: 6Member Listener
    You can say that again. It was only after the complaint and a year after first seeking help I found that there was a specialist trauma center that offered therapy she needed. Up until then they did not accept long term issues from childhood. 
  • littleruthie123littleruthie123 Posts: 460Member Pioneering
    Wow all these red tapes and non funding is pushing people intoo despair and desperation 😢
  • debbiedo49debbiedo49 Posts: 2,891Member Disability Gamechanger
    I had the symptoms of ptsd around 7 years ago and I was offered very little help by my gp other than to self refer to a local mental health organisation who have a limited amount of resources and could only offer 6-8 sessions of CBT therapy. This helped me initially to overcome one of my symptoms but then I was on my own. I lost about 2 years of my life after that where I can barely remember what I did as I was in a fog and on medication and getting no help. I then got my gp to refer me to the local mental health team which should have been done at the start and they offered me 6 sessions of CBT. The area of ptsd seems to be unknown and under funded in the UK and there seems to be very little help available on the NHS. During the time I lost I became agorophobia and developed panic disorder, this has been an ongoing challenge for me to overcome. I do not believe I would have developed these issues if I had got the correct help at the start. It’s purely close family and self determination that I’ve managed to get help for myself. Unfortunately mental health services seem to be under resourced and under funded and I blame the government for this. I’ve never really been treated for ptsd rather the symptoms that can be managed. 
    💜🏴󠁧󠁢󠁳󠁣󠁴󠁿
    I am a fibro warrior !💜♏️
  • azalight90azalight90 Posts: 6Member Listener
    I had the symptoms of ptsd around 7 years ago and I was offered very little help by my gp other than to self refer to a local mental health organisation who have a limited amount of resources and could only offer 6-8 sessions of CBT therapy. This helped me initially to overcome one of my symptoms but then I was on my own. I lost about 2 years of my life after that where I can barely remember what I did as I was in a fog and on medication and getting no help. I then got my gp to refer me to the local mental health team which should have been done at the start and they offered me 6 sessions of CBT. The area of ptsd seems to be unknown and under funded in the UK and there seems to be very little help available on the NHS. During the time I lost I became agorophobia and developed panic disorder, this has been an ongoing challenge for me to overcome. I do not believe I would have developed these issues if I had got the correct help at the start. It’s purely close family and self determination that I’ve managed to get help for myself. Unfortunately mental health services seem to be under resourced and under funded and I blame the government for this. I’ve never really been treated for ptsd rather the symptoms that can be managed. 
    You should get your Dr to refer you to a 2ndry care psychological therapy service if at all possible. There will be other services depending where you stay. It’s just accessing the NHS ones are incredibly difficult.
  • debbiedo49debbiedo49 Posts: 2,891Member Disability Gamechanger
    Thanks @azalight90 I’ve self referred again to the NHS team and I’ve been triaged. So I’m waiting on their decision on whether they can’t help me or not. I would consider my ptsd almost gone now but have panic disorder and other mental health issues as well. Luckily I have personal experience of these issues and know how to ask for help eventually. I’m way better than I was. Just a bit stuck. I just wanted to contribute .
    💜🏴󠁧󠁢󠁳󠁣󠁴󠁿
    I am a fibro warrior !💜♏️
  • susan48susan48 Posts: 2,202Member Disability Gamechanger
    @debbiedo49, I have started a thread, called FINALLY,
    its about my own battle to get MH treatment. 

    Dont give up fighting x
  • newbornnewborn Posts: 304Member Pioneering
    Mind website points out COMPLEX ptsd  has no known treatment, and is badly named, since the resemblance to ptsd is slight, and it is frequently misdiagnosed as bpd . Mind states NICE warns against any standard ptsd 'treatments' or drugs, as these are unlikely to help, only to harm.  

    Child abuse survivors  frequently are self sufficient, functioning, hard working and do not fit any known mental health 'illness' category.  They are torture survivors. 

    They are harmed, damaged, hurting and failing to experience joy in their lives, but they are not clinically depressed, nor suited to any other neatly fitting mental health label.

    They are certainly not  automatically taking drugs, being criminal, abusing their own children, failing to work and function, weeping, or showing their emotional pain (or, often, their physical pain. )

     They learned early never to cry out, never to expect help from anyone in their world, never to ask for anything, never to waste their attention on 'feeling' or even identifying hunger, pain, or  needs of any type.    If they survived at all, then whatever didn't kill must have made them strong.

    But they are isolated, often re-abused due to having no knowledge or practice of who to trust and mistrust,  how to form close confiding relationships even with their own children, whom they usually raise with greater care than average.   

    (Think about it.... assume you are even more resolved than an average parent to ensure your own child has a perfect life, no matter what sacrifices to your own comfort or happiness.  You don't know what a happy well functioning family looks like, but you will work till you drop to do everything you can think of to make your child's life free from anything like yours was.   

    The last thing you are likely to do is reveal  the cesspit of tortures you went through, to your darling little angel-face child.    Said child will soon sense you are keeping a lot hidden.   Being secretive will alienate the beloved  child, who matters more to you than anything in the world, certainly more than your own life.  Soon, your child, too, will reject you) 

    They

    Survivors of extreme child-then-adult abuse could really do without being repeat-excluded, re-traumatisingly repeat-rejected, especially  by officially sanctioned power-abusive organisations.    From birth, they may have been forced to accept they are somehow 'lesser' creatures, not really supposed to exist, not worth rescue, consideration, protecting or saying a kind word to, not as important, or even as fully human,  as others.

     It is  cruel  to realise that in all official systems, extreme abuse survivors  are not fully compliant with the tick boxes. 

    Therefore, they are effectively   'deemed'  NOT to exist.

    ...............Therefore, they ought to Stop It At Once        (!)
  • WaylayWaylay Posts: 875Member Pioneering
    @newborn This post describes me frighteningly well.

    C-PTSD can be treated in a variety of ways, although few studies have been done with people with complex traumas because most rule out people who self-harm, have attempted suicide, have co-morbidities and/or substance abuse problems, etc. DBT (used to treat people with BPD) can be very helpful if run by trauma-informed providers. Other trauma-focussed therapies such as CBT, body therapies such as somatic experiencing, and EMDR have all been found to be helpful. However, in most therapies the patient needs to form a close, trusting relationship with the therapist and/or other people in the group, which can take a long time given the type of personality most complex trauma survivors have had to develop. Both patient and therapist/psych team have to be ready for a long-term commitment.

    There are 3 phases in the treatment of Complex PTSD which are very important to follow, laid out here: (oops, ads on there). Go to psychcentral blogs and search for "what-does-the-treatment-for-complex-trauma-look-like". Ignore the ads at the top. It should be the first article. The 3 phases are: Safety and Coping, Trauma Processing, and Integration.

    That site has a lot of useful stuff on it.

    Another site of use is https://www.sidran.org, although it doesn't mention C-PTSD much.

    A really important book on how the body stores trauma (mainly in C-PTSD) is "The Body Keeps the Score". Incredibly good.

    There's also a guy called Pete Walker who has written several books on this kind of thing (he's a childhood trauma survivor). I've only read 1 so far, but it's fantastic: Complex PTSD: From Surviving to Thriving: A Guide and Map for Recovering from Childhood Trauma. He also has a really good website.

    There are workbooks of various types on healing from C-PTSD, but I've been told by others that it's best not to do them by yourself. Working through them with a trauma-informed therapist is a good idea.

    In the UK (dunno where you are) there are a few centres for treatment of complex trauma and C-PTSD, including The Retreat, in York (private, I think), Beacon House (not sure if private) and the Trauma and Dissociation Service at Maudsley Hospital.





  • newbornnewborn Posts: 304Member Pioneering
    Thanks for reply. I think it would have been considered peculiar if people had run up handing out mental health labels to the still -alive, as they were pulled out of piles of bodies in Belsen.  

    But for some reason the u.k. mental health industry insists on sticking labels to inform  torture survivors they are all crazy.

    The  Rich organisation looks interesting,  (as is the fact NICE declares there is no such thing as treatment  for what is problematically misnamed complex ptsd.  )  It's a pity the RICH philosophy (that it might be good to behave with people as equal human beings) is confined to them, and that they are in USA.
  • feirfeir Posts: 356Member Pioneering
    I'm in facebook groups with other survivors. We support each other.
    Mental health is hard to understand unless you've lived it or been with someone who has. I think so anyway. And that's why there are so many failings in the 'industry', they just read about stuff and then diagnose based off one comment that lines up with a diagnosis or something stupid, like how is 1 hr a week even gonna give someone enough time to observe and actual mental illness?
  • newbornnewborn Posts: 304Member Pioneering
    Contact with fellow survivors , such as people stll alive after torture and attempts on life, would be good, but the point is, COMPLEX ptsd is not, not, not, mental illness.'

    DESNOS (and other ideas) are suggested as a better label than ptsd, which is ' much too inadequate  a description of the complexity and magnitude of effects   of torture, ......which is 'severe pain or suffering, physical  or mental, intentionally inflicted. ....with ...aquiescence of ....an official'   '    U.N. '84.

    Standard "treatment" designed for mental illness is highly counterproductive. ' (Mollica 89) (NICE  2018)

    Social contact with those with fellow experience is a help.  Identifying and reinforcing the existing survival strength, and talking on a basis of equality helps.

     (I. E. The exact opposite of a mental sickness industry professional taking the  enjoyably lofty  position  of power over the victim, which harms, by reproducing helpless power imbàlance and control).

      N. B. How much equality of power, and respect, is involved in the mentally sick-industry- professionals'  routine ?  ...... Summoning to a venue chosen by the power holder, at the time dictated, for the duration dictated, for as many 'sessions' as the power holder dictates, and after a waiting period dictated. ..

    .........Would that restore the victim's self esteem,  sense of control,   of self, of exercising healthy balance of power in relationships?   Or,  would  it be calculated to  reduce it?

     The aim is not to 'correct the faults in the crazy person'.  On the contrary, it is to emphasise the non-craziness of living through extreme and prolonged and repeated abuse.

       Identifying, encouraging  and supporting the individual's  own interests, wishes, needs and goals to enjoy a fuller life, closer to the inherent  potential if the extreme abuse had not happened, is what  helps.


  • newbornnewborn Posts: 304Member Pioneering
    I just put a careful post up, went to edit it instantly, but cannot recover it.
  • TWilTWil Posts: 1Member Listener
    Hello,  It's helpful to know there are others out there struggling to get the help we need to cope with this and life in general against almost a wall of general ignorance about the difficulties of it.  I'm about to start treatment for the above with a Private Clinical Psychologist after years of suffering almost unbearable anxiety following emotional / physical abuse and abondonement during childhood and early adulthood till age 28.  I'm 52 now and despite several attempts since about 2000 when I had my first real anxiety attack and the other ways it has affected many aspects of my life,  it's taken till recently to find this Psychologist who specialises in C PTSD.  Thanks to all who posted above.  A lot of useful info there.

    TW
  • SurvivingTaraSurvivingTara Posts: 44Member Pioneering

    Complex PTSD IS a disability, it isn`t veterans who are affected, but they might be affected, which may be underlying PTSD.  In Complex PTSD, trauma occurs in individuals when attack or abandonment triggers a flight  and fight response, in childhood environments, which they  can`t turn off. It is a severe form of post traumatic stress disorder, and there are symptoms to be managed. Often UNWITTINGLY caregivers, in environments, (because of their own  unhealed traumas in childhood), can traumatically abandon, neglect, or verbally, emotionally, physically or sexually abuse children, who then develop Complex PTSD...   Many caregivers ARE doing the best they can with the knowledge or emotional tools they have been given, however, some react angrily to a baby or toddler`s calls for connection, attachment, and  normal development, then, frightened by a response, children can become stuck in the adrenalized state with a sympathetic nervous system locked on.   Some children are bullied and hurt at school, so, many remain  hyper vigilant and can suffer from CPTSD. It scars and affects the brain.

    In my 70 years experience of trying to get care and services through the traditional, medical model of health, which individuals in the Western world are referred to, GP and referral to mental health services is productive usually if one is willing to have the `symptoms` of Complex PTSD, repressed, with medications.  Like I was in the 1960s, with Valium or Stellazine, which gave horrendous side effects and addiction, and iatrogenesis resulting from activity of persons acting as healthcare professionals, purporting to care for individuals, assuming they are. Then onto pain killers for migraine, which unwittingly suppressed the symptoms of CPTSD, and when I came off them, I had discovered I been addicted to them, then, all the `Symptoms` of CPTSD arose. Rarely do you get good help from GPs, who are the gatekeepers of the big pharmaceutical companies. A GP or psychiatrist is trained to DIAGNOSE, then provide the chemical cosh to quell `Symptoms`, and all the NHS services are geared around keeping you suppressed and quiet.  If that is your choice it is OK. If you don`t want to take the medication they can section you, under the auspice of, for your OWN GOOD.  It is NOT !.  People behave in certain  disturbing ways because they have been traumatized, they don`t need re-traumatizing.  They need calm understanding and positive regard.

    One of the MAIN POINTS in a post by Jeremy J, on this site, hits the nail on the head.

    MOST mental health issues in the country are all a consequence of poor, traumatizing, neglectful or abusive interaction in environments, Or injury to the body in some way.

    This is why ALICE MILLER,  psychologist, in many of her books (e.g. For Your Own Good, The Body Never Lies, Thou Shalt Not Be Aware, The Drama of The Gifted Child etc), states there is much collusion to keep quiet the fact, the roots of violence, neglect and abuse in childhood, and that not good enough caretaker skills world wide, traumatizes children and it is endemic in society. That most of the health professionals have been actually traumatized as children, and it is that, the powers that be, want to suppress it, so won`t admit or cater for Complex PTSD. They daren’t, and if you get a professional to speak about it, they may lose their career if they are discovered, not toeing the offical line. Others can get angry at you. This is why society is in a mess, and there are a lot of suffering people, which is overwhelming.

    PETE WALKER, (e.g. Complex PTSD, From Surviving To Thriving  2013) is brave indeed. The book is informative, and a brilliant resource. Many adults, who have been labeled with many things, (not treated as an individual  or lovely person they are) and said, by medical model of health, to have mental health issues, per se (like blamed and shamed once again, by them, re abused, assuming symptoms just come out of the blue, or fall on you from the sky), and only prescription medication given, are only just learning about CPTSD and its effects on them.

    Many adults who have not been understood have suffered at the hands of the NHS or medical model of health.

    The body Speaks Its Mind by DEBBIE SHAPIRO, All Alice Miller books. (Miller actually resigned her post as a psychologist, because she said, there is a major cover up and collusion in the world, about traumatized children which has implications for adult health), are other resources. HOWEVER, like me, one can read and research all,  and learn to meditate, and reach out to others etc, but in the end one needs genuine support and someone to be contactable in a moment’s notice, when in emotional flashback, which after stopping all medication 20 years ago, for me is often, (because was not ENABLED to deal with CPTSD by any health service or otherwise), and have no-one to help me, because after years of knocking on doors, asking  GPs or therapists,  ( who got angry at my suggestion of CPTSD or whose eyes glazed, at a moment’s notice, because they had probably been traumatized and we were having a transference-projection episode), and who wanted to channel me to NHS or make me take medication for CPTSD, who just would not offer anything else, because there was nothing for CPTSD, in their diagnostic computer.

    BASICALLY, for society, there are so many people suffering from CPTSD, mis-diagnosed often as something else, so a GP can put them on medication, to suppress the symptoms, not deal with the cause, or the whole person humanely, trauma, neglect, or abuse in childhood.The cause of dis-ease.

    Recovery or management of the brain that has been hijacked into Fight, Flight, Freeze or Fawn mode, at an early age, and can be triggered by things in the environment,  has to be a multi-facilitated approach, IF ONE CAN FIND, an enabling other or group. I live in top north of UK and resources or groups are nil in this area. Therefore, it has been for over 40 + years, self help or nothing. It feels awful and at times scary.





  • newbornnewborn Posts: 304Member Pioneering
    What an interesting post, thank you.

    The Mind website mentions that N.I.C.E. guidelines state there is N O treatment  or drug for so called Complex P.T.S.D.      They add a warning that whatever drug or treatment  is considered appropriate for ptsd, is not only N O T  suitable for complex ptsd, it is likely to be harmful.

    The term Complex Ptsd itself is now controversial, being considered  misleading and unhelpful, because there is only a passing resemblance to 'conventional'  P.T.S.D. 


    The O N L Y thing found to be of help, is to have regular contact with a group of people with similar past histories.    That needs arranging and facilitating.   But outsiders,  who cannot possibly comprehend, can only alienate and hurt survivors.   

    Any implication that the survivor  is crazy and needs to be medicalised and labelled is extremely damaging.  

    Prolonged years of fearing for life, trapped in helplessness against extreme power abuse,  are re-enacted, not remedied,  by imposing  any unequal power relationship.    Such extreme torments are isolating.   Isolation requires remedy by contact with others whose past experience was similar enough to make them 'one of us', i.e. people who can comprehend, even without needing necessarily to talk about what they had in common .  I 

     Ex-Concentration camp  survivors and other prolonged horror survivors felt at ease together, in a way they often couldn't with outsiders .    Dragged  still alive from piles of corpses, they might have benefitted   from food, clothes, attention to wounds.

     Not, though, from someone rushing up with a bucketful of  labels to hang round their necks, marked with various random mental illness names. Not, either, from being obliged to regard themselves, and forced to accept being regarded, and 'treated' as a wierd 'patient' whose 'faults' need correcting by a non-friend, non-available, impersonal professional.

    Those pulled still alive from piles of dead bodies after the single incident of an earthquake will probably be more  liable to conventional ptsd than the rest of the population.   However, the majority will be resilient, and the best thing for them all, resilient or showing symptoms, will often be not talking about, or dwelling on, the single experience, merely being able,  if they wished, to mention it in passing, to fellow experiencers, or to a general population who have heard about earthquakes.

    An earthquake survivor will never fear being regarded as wrong, crazy, or lying.  Nobody will silence him, nor disbelieve there is any such thing as earthquakes. Nor will anyone assume that even if there was some such thing, and even if the 'being buried alive' thing he mentions really did happen to him, he probably  brought it on himself.  Nobody will demonise him.  Nobody will tell him he is mad.

    The single, isolated person who has, especially in early childhood,  been totally alone and helplessly trapped in years of exteme prolonged  trauma,  can only expect to  be Silenced, Disbelieved, and Demonised . He will invariably be regarded as mad, abnormal, deluded, lying, outside the closed circle of the normal 'in-crowd' of the ordinary human race .


     

       


  • PTSDdisabledPTSDdisabled Posts: 60Member, Member - under moderation Connected
    Hi,

    Have tried to get a referral to a Psychologist? They can take you through the Becks Scale and give you a score. With that you may be able to get an appointment with a Psychiatrist.
  • Cat19Cat19 Posts: 5Member Connected
    SurvivingTara is absolutely spot on! The best thing available out there on CPTSD, what it is, how it manifests and how to treat is is in Bessel van der Kolk's The body keeps the score. He's one of the top specialists in trauma out there having studies it and worked with it for many decades.

    I live in London and know the NHS system very well, you won't find any help at all in the NHS for CPTSD. Not even for something as basic as anxiety, let alone complex trauma, considering the budget cuts in the past few years by the Tory government.

    What the NHS can offer for ptsd is medication (not enough and not useful most times) and talk therapy (which is useless for trauma) - see The body keeps the score for thorough explanations on why that is.

    The only way to get help is through private treatment but even then most psychotherapists and psychiatrists will not have heard of the latest developments in trauma treatment; they parrot the same old crap: psychotherapists can only offer talk therapy or superficial treatments of cognitive behaviour therapy, neuro linguistic programming etc which are useless for trauma.
    Psychiatrists can only offer medication and more medication and nothing else.

    So the way to healing is by finding private practitioners (which are expensive yes) that specialize in complex trauma and are aware of the latest research findings and treatments in trauma and use them in their practice.

    I've started from scratch 4 years ago and gone through countless moronic hoops within NHS and private treatment so I'm speaking from experience. I wish someone had told me how to avoid all this crap and would have saved myself pain, time, huge efforts and thousands of pounds. I can't stress enough the importance of reading van der Kolk's book to give you a very good perspective on what you're dealing with and what are the treatment options available.

    I wish you all the best, you can definitely treat cptsd. It is very difficult, but certainly doable.

    If you have any questions, I'm happy to answer.
  • newbornnewborn Posts: 304Member Pioneering
    edited June 14
    Cat 19 thanks for reply.
    N.S.T.Survivors repesentatives reject  the term D I S O R D E R.   When being tortured,  whatever response keeps you, the victim, alive is  the perfect response.

    Only those who speak the same language could even believe the response.  How could they comprehend  a tiny child  attending first day at nursery school, who never cries,  is instantly obedient, and never cries out in pain? Teacher instructs children to gather round the piano. He is first to obey, closest to the piano.  She is a large lady.  At the end of the lesson, she realises that the whole time, the leg of her piano stool has been crushing the  boy's foot.

    Obedience and never crying or crying out make good sense for any helpless prisoners powerless to escape,  never believed, with nobody bothered, or able, to intervene.   Nobody believes  because  nobody  cares to.  Calling the whistleblower  crazy  means  colluding  with the attackers.    Disbelief  is the  worst reaction,  and  it is the main reaction enabled  by  a mental  illness label.   

    A mentally ill label  belongs with torturers, not their victims.

  • newbornnewborn Posts: 304Member Pioneering
    Craziness professionals earn an income from craziness labels,  ( not paid  by results, either)

    Where is their incentive to facilitate  on line or other friendship groups  of  N O N crazy survivors who speak a survivors  language  which only their fellows comprehend?

    Where is their incentive to advocate for people who R E S P O N D in  ways which are merely  a little unusual,  not crazy ?   The worst thing to do to a torture survivor is  branding with a craziness label, inviting everyone to have open season on disbelieving  the 'crazy person'.   So, if the survivor does not burst into tears, or does not give evidence of pain, what is needed is a language interpreter. 

    She may need to report abuse and re-abuse.   But she isn't  sobbing, and if she is carrying a branding of craziness it confirms she must be lying.

    She  may be unable to force herself to go for gynaecologist checkups, meaning she now has the label of uncooperative.  She may not face a doctor prodding at her and asking "Does this hurt?".   She cannot scream out, she is overwhelmed by the conflict in  her lifelong best practice  of her never admitting  pain, and struggling to breathe from the intensity of agony of what the doctor is doing.



  • newbornnewborn Posts: 304Member Pioneering
    Just  a small thing, but it illustrates a lot.  On Pandora's  Aquarium,  lots of people  mention avoiding  dentists, and doctors,  and someone  mentioned she avoids hairdressers.   Several others jumped  in to say "me too".

    If you 'speak the language,'  you won't  need it spelled out.  Women's hairdressers invariably include  hairwashing, in other words they instruct you the customer to go and lie back while water is poured over your head, your head is often firmly grasped and  manipulated  into the required  position. This is Not Good, not at all good.

    As a Survivor, you will be obedient and silent, even if it hurts, even if the trainee girl, who will have been told to do the chores of floor sweeping and shampooing,  rubs your head roughly as if she is scrubbing oil off a car mechanic's filthy old overalls.  Any other customer  would protest. You won't.  You go into automatic mode.  You just grab breaths, cooperate, and wait for the nasty things to stop being  done to you.
    .
    Sometimes  an inept junior may have the water at a worrying temperature,  or pour some over your face or into your ears.  Often a towel is pulled round the 'client/victim's' neck and another thrown  over her head and often even briefly  over her face.  All in all, this amounts to a  Really Bad Plan!   

    And,  insult on top of injury,  women's hairdressers even customarily expect to charge a lot of money, plus expect tips,  plus expect compliments,  after staging these  pale but disturbing part-re-enactments of what people used to do to you! 

    Can you be surprised some Survivors prefer to avoid women's hairdressers?  But are they crazy to dislike, and avoid,  such places?  Should they be taking medication, or being subjected to a talking treatment for curing craziness?
  • Hart86Hart86 Posts: 360Member Pioneering
    I’ve not heard of Pandora’s Aquarium, what is it? I don’t have ptsd or at least not diagnosed but I’ve always struggled at hair dressers and never been able to articulate the problem, in fact I just figured how I felt was normal that everyone feels uncomfortable there. I’ve laid with scalding water washing my hair and nodded that the temperature was fine (same with ice cold!), I’ve meekly nodded my approval when they’ve taken inches too many and felt so very uncomfortable when asked what I would like or what they can do for me today, never able to give a response.
    I don’t know if that’s quite the same but your post really touched me. I’m sorry you feel so powerless too @newborn
  • newbornnewborn Posts: 304Member Pioneering
    edited June 18
    Hart86 thanks for reply.  Do you find difficulty  in  other situations where you are obedient and compliant, instead of  standing up for yourself? 

    NSTD Survivors campaigners strongly reject the  word Disorder.  They say a response is not a disorder. 
    They say prolonged torture especially from childhood is N O T Abuse, it should  be named  Torture [removed by moderator]
    Today a thread someone posted on this site was called Feeling Low? Read this.   It was joking, not a true story,  but it held a truth.  The gist was about a ptsd-labelled soldier who  fell down a hole,  and the conclusion was that only a fellow survivor could help him out.

    Pandora's  Aquarium is a member site, with public posts too.

  • Hart86Hart86 Posts: 360Member Pioneering
    I’ve always struggled to stand up for myself and be anything other than compliant, although I think a lot of this comes from self esteem, social anxiety and desperation but I can relate somewhat to how being an adult that’s still compliant and doesn’t stand up for themselves feels. Not many people understand it and I’ve never spoken to someone else who finds even a hairdresser appointment a harrowing experience.

    I do agree with the reasons the NSTD campaigners say that about the word disorder, I think it’s an appropriate reaction and understandable given circumstances rather than a ‘disorder’. 

    I’m not sure if the rest of your post relates to you or your experiences, but if even a small amount of it is, I’m so very sorry for what you endured. 

    I did read that “feeling low” thread and I agree, it can take someone else to be in the hole to help you out of it because they’re the only ones that could ever really understand how you might, on any level, be feeling. 
  • Adrian_ScopeAdrian_Scope Posts: 4,038Administrator Scope community team
    Hi @newborn, this is really interesting.
    I've not really contemplated the use of the 'D' in PTSD before, nor the points you made about compliance. 

    Thank you for sharing.

    Hi @cat19,

    Thank you for your offer of advice. It's very generous. It's a shame so many people in these situations are struggling to find the right support on the NHS.
    Senior Online Community Officer
    Scope
  • newbornnewborn Posts: 304Member Pioneering
    I have a new word to offer, and would like to see if others relate to it.

    What do people think of replacing the confusing terms low self esteem and  low self worth, for a certain group who have a different situation,  one of poor sense of E N T I T L E M E N T ? 

    People treated as less than equal,  as not important,  as not counting, will eventually get the message that  unlike the rest of the population,  they don't matter.

    Nobody cares about their existence,  let alone their happiness.  

    They will tend to give way, try to earn a place in the world by working hard, giving and not asking, helping others and never expecting help.  They respect others, but never express their own wishes  or likes. They don't  stand up for themselves. 
  • Hart86Hart86 Posts: 360Member Pioneering
    It’s taken me a few days to come back to this and reply as it struck such a chord with me @newborn, I think you’ve completely explained it way better than I ever could. I definitely suffer from a poor sense of entitlement. I don’t value myself.

    I’m so sorry if you feel the same, it’s not a nice place to be. 
  • newbornnewborn Posts: 304Member Pioneering
    Thanks Hart86. Glad it was useful to  you.  I strongly suggest  thousands of folk are being badly abused by the harm inherent in 'treatment '  which  is the exact opposite of what they need.

    It must be equivalent to pumping insulin into a non-diabetic.  



  • reterete Posts: 16Member Connected
    Oh wow so so glad you put this post up I have ptsd extrem so I am being told and yes my gp as tryed getting me help but nothing yet I AM in staffirdshire  . But am going to attend a group called wellies in a few weeks it's a place for people with mental health issues so hoping it's somethink to get me out at least do see a counseller  too . Have given up on finding help soully  for ptsd . Has it seems the mental health services  are now not fit for purpose lol . Will just find my own way through it and find my winds to fly .
  • WaylayWaylay Posts: 875Member Pioneering
    ****triggers mention of rape****
    .
    .
    .
    .
    .


    @newborn I had a massive panic attack the last time I tried to have a cervical smear. It lasted 2 hours, until they stuffed me full of benzos. :/ I never had a problem with pelvic exams until ~5 years ago, when I was drugged, taken to someone's flat, and raped multiple times. Can't deal now. The rape triggered my CPTSD bigtime. I was very lucky to get 6 months of free rape crisis counselling, followed by continued counseling for very little money. 
  • WaylayWaylay Posts: 875Member Pioneering
    I have to say, every time I have to go through an round with the DWP for ESA or PIP, my CPTSD gets triggered again.
  • Hart86Hart86 Posts: 360Member Pioneering
    edited July 4
    I hate to admit but I’ve avoided smear tests for similar reasons (plus the whole not leaving the house problem!). I’m so sorry to read what happened to you @Waylay. Have you found the counselling to be useful? 
  • Hart86Hart86 Posts: 360Member Pioneering
    It’s awful isn’t it @rete? It’s crazy how little support there is!! Great news you’ve been able to find a group ❤️
  • Adrian_ScopeAdrian_Scope Posts: 4,038Administrator Scope community team
    Hello @rete, I don't believe we've 'met'? Welcome to the community! 
    Sadly there are huge waiting lists for mental health support, but I'm glad your GP is trying to get you some help. I haven't heard of Wellies before, you'll have to let us know how you get on at the group.
    Senior Online Community Officer
    Scope
  • reterete Posts: 16Member Connected
      WARNING TRIGGER   .Arrr thank you yes only found out about wellies project from a friend who used to work on mental health and was involved in setting it up .its their 10th anerversary  so having an open day which I have been invited to . Think there are other such groups in other areas . Though feeling abit anxious about going am determined  to go and face the fear . Will let ya know how it goes . And yes counselling  is going well too though that's for child hood abuse . But covering all things was talking about my inability to pick clothers and feeling unsafe when wearing anythink other than trousers and how that makes me feel. Don't know is any one else has these issues ??? . 
  • Chloe_ScopeChloe_Scope Posts: 5,444Administrator Scope community team
    Hi @rete! The wellies project sounds really interesting! I'm glad the counselling is going well for you. I hope you have found it helpful to talk through things with them :)
    Chloe
    Online Community Officer
  • WaylayWaylay Posts: 875Member Pioneering
    @jose2 Just noticed your rheumatologist comment. There *must* be a rheumie at your hospital, as they deal with arthritis, and every area has people with arthritis!!!! GP either uninformed or lying...
  • newbornnewborn Posts: 304Member Pioneering
    Message to  anybody who has endured things done to them.   You are not the ones who are mentally faulty,.   The people who did those cruel things to you are the ones who are mentally sick and need mental treatment to correct their faulty thinking and behaviour. 

    Message to Waylay. The post about the distress of being subjected to official interrogation makes perfect sense.  There is no equal  power  balance.   The individuals  who operate the system can choose, if they wish, to harm you.   Even  demanding all your personal data is not a comfortable situation.  You have no knowledge about  them (not that you would want to), but information  is power.   

    All power tends to corrupt,  absolute  power to corrupt absolutely.   Any rich powerful man is likely to  believe he is entitled to have everything he wants.  Any battered beaten cowering powerless woman is likely to  believe that protest is unsafe, and that her life or death, let alone her likes and dislikes, are irrelevant and meaningless.

    For many of us, people who have had power over us have used that power to damage us.  Of course we don't find it easy to re-live or re-experience any power imbalance. 

    Being  in a supermarket buying some food is a perfect balance.  You choose when to go, where, how much to spend, and exactly which items suit you best.   The cashier will take exactly the correct amount.   They won't be in any way  unpleasant to you, nor you to them.   Nobody can  force you to do anything you don't like, nobody has power to harm you at all.   It is perfectly safe and there are even professional security guards who would, probably,  come  to your rescue if a fellow customer decided to attack you. 


  • Adrian_ScopeAdrian_Scope Posts: 4,038Administrator Scope community team
    A very interesting observation @newborn, thank you.
    Senior Online Community Officer
    Scope
  • newbornnewborn Posts: 304Member Pioneering
    P.S. There is the start of a kick back  against the term Disorder.  Soldiers trained their own  responses to  make  sure they didn't waste time thinking things out, just automatically hurled themselves flat instantly at the sound of a gun. That kept them alive,  so it wasn't a Disorder.   

    After the war, for years, some couldn't always stop themselves doing the automatic response if a car backfired.  Perhaps to the end of their lives, they would be unwilling to attend a fireworks party.  Maybe they avoided crowds, confusion, traffic noise, situations where there was a resemblance to a chance of suffocation, thirst, hunger, cold . Maybe  they avoided  close relationships after so many best friends had died horribly.  Maybe they didn't explain to others the reasons,  and maybe  they didn't  even realise it themselves. 

    Going through  battlefields was bad enough  at the time, so their brains did the sensible thing to  protect them by closing  out most of their memories.   It wouldn't  be Therapy to try to force them to re-experience the unbearable,  and  to chat about what emotions they  were supposed to have  been  experiencing throughout all those horror years.

    But it would be unforgivable  for any doctor  to brand them with the label  of Crazy,  just because were unusually  and unnaccountably averse to noise and other things.


  • reterete Posts: 16Member Connected
    edited July 12
    Think your missing the point a wee bit . Going into a supermarket is only balanced if you are not carrying baggage from the past. like  me it's not so much the supermarket it's self. we carry the truma from the past within us our inner child . The place is a trigger that sets us back there and we become that child again at that moment we are no longer an adult we feel all that we did at that momment in the past but in the here and now .There  is no magicwond or answer We have to work through it and change our inner response it takes work and time .
  • HollyGCatHollyGCat Posts: 64Member Pioneering
    I don't much mind the labelling.   I don't feel I have an identity anyway, so its no different that hearing my given name.  I think from reading the comments on here I have been lucky in my area with the NHS.  It was a six month referral process but I have been seeing my psychologist for three years weekly.  I don't however, appear to be improving though I am told I am.  I am still in stabilisation and yes, drugged to the eyeballs with benzos, anti D and such.  I was upset to see CPTS(D) or not (D) was not categorised in DSM as separate to PTSD.  Was this done to prevent offering treatment?  I fear reading your posts that treatment may be withdrawn at some point.  I rely upon it to

    TRIGGER****


    Not self harm or attempt suicide.  I do have a lot of diagnosis, and some of which confuse me greatly.  I have been told under the umbrella of CPTS(D) that I also meet the clinical criteria for BPD.  I suffer greatly with Dissociation but have no real understanding of it.  I look at PODS website and it talks of OSDD and DID, but I feel that OSDD does not really fit.  I have a thing about names, as in, I do not identify with any.  Therefore, my critical child or as I label them, younger me, child at 13, 19 etc, do feel very separate from each other, but are not named 'ROD JANE AND FREDDY'.  I feel I am miss or over diagnosed and I feel that the treatments that might help, (DBT) (EMDR) are not available to me.  One because it is only offered in a group session and I am totally unable to do this as I dissociate in groups and the other because I don't make eye contact.  I am in my forties, room bound and feel totally isolated and non-existent.  I lost a career I adored due to this condition.  I don't know if anyone else on here can help by explaining their dissociation and if they feel the CPTS(D) with dissociation doesn't seem valid?
  • Chloe_ScopeChloe_Scope Posts: 5,444Administrator Scope community team
    edited July 12
    Hi @HollyGCat and a very warm welcome to the community! Thank you for taking the time to introduce yourself and share such an interesting perspective. There's a lot around diagnosis and whether or not someone believes it fits with them. Have you ever had the chance to discuss your diagnoses through with someone?

    We are not mental health professionals but if you feel we could help in anyway then please do let us know :)
    Chloe
    Online Community Officer
  • HollyGCatHollyGCat Posts: 64Member Pioneering
    Hi,  I am trying to research the dissociation and am intending to speak to the person who diagnosed me next week.  But I am worried about upsetting them when the lady has been excellent.  I just feel a bit uncomfortable saying I don't think she is right, when she is the expert.  Its so difficult though to access help when you can't sit in a group and can't look at anyone.  All the (co-morbid) diagnosis makes it even more confusing.  I am just trying to understand what I can do to get some form of life, as I don't have one right now.  Just had to miss my daughters graduation, which was so awful and I feel so guilty.  Thanks for responding and your welcome :)

  • WaylayWaylay Posts: 875Member Pioneering
    @HollyGCat ; I dissociate, although I don't really know how much (I spend most of my time alone). It's different, depending on the situation, but it always starts when I get triggered by something (usually something sexual, as much of my trauma is sexual in nature).

    1. When I'm alone, usually in my room, it usually happens so fast that I don't even realise what's happening. I just go away - nobody home. It lasts 40-70 minutes. When I come back, the only way I know it happened is that my back is stiff & painful from staying in one position (chronic pain, whee!) and the angle of the light has changed. I wonder if it happens for shorter periods that I don't notice, too. Kinda scary.

    2. When I'm talking to someone (usually my counselor, but sometimes a partner or friend) and I get triggered by the topic of conversation, I can usually feel it happening. It feels... Slidy? I fight it, but I've never been able to stop it. I go blank for a few seconds, but only my counselor and people who know me really well notice. When I come back, I've completely forgotten what we were talking about. I also often forget what we worked on in a counseling session as soon as I walk out the door, and she has to remind me the next week.

    3. This has only happened about 5 times that I know of, but I'm pretty sure it's happened many times in the past. Something will trigger me while I'm being sexual with a partner, and I'll either curl up in a little ball and go silent or I'll start babbling about something completely non-sexual. I don't remember these episodes - I'm gone, and I only found out that they happen when my partner mentioned it one day. He assumed that I was aware of it and just didn't want to talk about it, but I had no idea! I was horrified. I wonder how many times it's happened in the past?

    4. Anywhere, anytime (which can be dangerous!), I'll suddenly get incredibly sleepy, to the point that I can't stay awake (I tried drinking a couple of cups of coffee right away a few times, but I just ended up semi-conscious for a couple of hours). I fall asleep sitting or lying wherever I am. It can last minutes to many hours. A few times it's happened in the middle of a conversation. My nearest&dearest just put a blanket over me and go on about their business. Sometimes this is triggered by something sexual, sometime by emotional distress, but usually it happens for no apparent reason. I'm pretty sure it happens because I'm about to have a back spasm, so my brain shuts me down. The complete relaxation of deep sleep will often head off a spasm. I'm not sure if this counts as dissociation....

    Voila. Hope that helps.
  • HollyGCatHollyGCat Posts: 64Member Pioneering
    edited July 13
    Waylay, thanks for taking the time to write such a comprehensive response. I recognised so much of what you said. I seem to be triggered by so many things. I to can feel a sliding loss of me (foggy) before, often, because I do tend to put myself in risky situations, when close to being fully dissociated, I will call a MH crisis line or even 999 before if I am aware that I am losing ability to stay safe and realise I’m likely to dissociate fully, though rarely the latter. I don’t remember usually anything after the events. I dissociate from anger or stress but also without knowing why.

    It also though happens on a daily basis to a lesser extent. I might be aware but feel like I’m detached from the situation. It leads to me doing things the ‘now me’ wouldn’t do. It seems in those moments that what I do is to someone who is not me. Consequently I have caused myself injury. I feel anger at times that is feral, but sometimes it’s like it’s not mine. 

    I do drift off into somewhere on other occasions and my daughter or husband frequently tell me something they claim they have already told me. I am completely unaware and I will insist it’s never happened.

    I will ‘probably rightly do’ feel completely shocked or humiliated by some things I do in such states. Certainly my neighbours will have seen me in full flight out of the house (which I don’t do unless dissociated) in various states of dress!!!  not good for them or me. 

    When  I look in the mirror, sometimes I don’t feel the image looking back is me.

    I lose so much time in a day from just being somewhere else. My husband says he can see it. I will appear almost trance like and I won’t hear him or speak back, I don’t know it.

    I just feel that after three years, something should have improved. I don’t feel like I’m getting any better. I can’t stop these things happening because MH helpline is so slow to respond, by the time I might have stopped it, I’ve left the building, so to speak.  

    It feels like there is little on offer to help other than a weekly chat about how ‘badly’ I’ve been the week before. I basically just take pills, worry about when it’s going to happen again. It’s never ending.

    Trigger***** my abuse was throughout my childhood but my memories are all over the place with many gaps. It was SA and emotional. I was also adopted and this added to injury thanks to the rejection by my birth mother at 19 who I think I thought was going to save me. 

    I never told anyone, I shut down emotionally. I don’t think in the 1970/80’s I would have been believed. I did try a couple of times, but it was not within my ability. 

    I to was a strong resourceful driven person. One day, something else happened. I was 45. (4 years ago). My world fell in and I have never got back up. 

    What you describe certainly does sound like dissociation to me and your response has broken a lonely day and was very helpful:)
  • SurvivingTaraSurvivingTara Posts: 44Member Pioneering

    Reading all posts, since my last post about Complex PTSD, saddens me how many are lonely and suffering in this western world, without genuine empathic and unconditional support, and are bound by the medical model of health, where pharmaceutical drugs, (with an iatrogenic factor, e.g. you take them for one thing and they give you another condition), are given, and that seems all there is for people on the NHS., because it is governed today by the pharmaceutical industry and GPs are the gate keepers of this business, trained to alleviate SYMPTOMS only, indefinitely. Private practitioners working in the field of traumatology are connected to clients needs and to finding the root cause of suffering, knowing how early emotional attunement of caregiver/mother and child, has implications for adult good health, and many of us have been affected negatively today. In fact the suffering is epidemic, but caregivers/mothers were only doing the best they could with the skills they had been given.

    Complex PTSD is related to developmental trauma, (e.g. when children are exposed to major or minor traumatic emotionally neglectful experiences, with no comfort), which many clinicians and people in western society in general are afraid to acknowledge. However, developmental trauma now is pervasive, acute not understood or treated in a therapeutic way without pharmaceutical drugs. As Barry Weinhold says in Developmental Trauma (2015),  a game changer for health professionals, if they were allowed to listen, (not part of their training for various reasons),  that when a caregiver /mother dissociates or shows facial expressions & behaviours to infants that appear scary or rejective or dangerous, (briefly or constant) infants feel afraid, then the brain stem activates a protective response that causes them to retreat, and another brain signal, the mammalian wiring fires unconsciously telling the child to escape. So an infant or child psychologically dissociates and is anxious and wounded. The process affects the infant`s fragile brain and nervous system, and thereafter impacts adult health. But this is rarely discussed within the medical model of health.

    As Rete made the valid point on their post, developmental trauma in childhood environments causes us to carry  baggage from the past into adulthood and it impacts health. This is NOT acknowledged by the medical model, or if it is the chemical cosh shuts us up.

    Holly G Cat`s post on 12th July expressed the concern that it is felt they have no improvement, and symptoms and suffering of the inner child suppressed with medication. Also saying CPTSD not categorised, by medical model of health. No it won`t be as it exposes lots of things. NHS expects OUTCOMES in all its approaches, and expects human begins to oblige, therefore the quickest and easiest, in a time based environment, an outcome is symptom suppression. Searching for a root cause and healing exposes many things about society.

    Then when there are OTHER negative or traumatic environmental experiences in a person`s life it compounds the developmental trauma issue, hence CPTSD.

    Waylay talks about challenging dissociation. DISSOCIATION via distracting activities or mental processes is only one of the symptoms of CPTSD, others are, EMOTIONAL FLASHBACKS (triggered in any environment), A TYRANNICAL INNER CRITIC, SELF ABANDONMENT (because we believe we are not good enough), ATTACHMENT DISORDER, ANXIETY (social or otherwise), TOXIC SHAME or GUILT, FEELINGS OF LONELINESS and ABANDONMENT the many other symptoms of childhood and further trauma. Staying indoors the scared inner adult -  child feels safe.

    FURTHER if as Holly G Cat fears they may experience, someone being upset by them being proactive in your health and healing, it is disempowering and, it reveals something about the so called care system and people in it. For example, the practitioners may be unhealed, (and have issues or baggage triggered) and the medical model of health, is authoritarian and controls the patient, with what they expect the patient to do, take medication and will frighten them into doing as their told.

    The medical model and traditional therapies (like CBT), that are offered on the NHS, will usually give medication to suppress SYMPTOMS, leaving the ROOT CAUSE of our health issues untouched, therefore, we are not going to heal if we do not discover the cause of our suffering.

    The goal of healing trauma, anxiety, fear, abandonment depression etc, etc is helping clients interrupt the fight and flight adrenaline cycle and modulate their sympathetic nervous system, with therapy sessions of nurturing, comforting, and understanding protective language which holds clients in a therapeutic experience for re-wiring of the neurons of the brain and healing. Or, outside of therapy, spending time in nature, all which brings the brain mind/body/spirit into present time reality,  to process intense experiences, emotions, and suppressed energy in the body, by witnessing and surviving in a safe therapeutic space. Clients do not need re abuse or traumatizing, with invasive practices.

    So those on the posts have said they felt they are not moving on in healing, this won`t happen until we get to the ROOT CAUSE of our distress and suffering. It is like peeling the skins off the onion, our issues are many layered.

    It must be remembered NHS or conventional health services, for us conditioned westerners is, pharmaceutically and business driven, to suppress symptoms and get as many people as possible on medication. Everyone since the 1940`s and free medical care, (when all other complementary therapies and healing were outlawed in favour of NHS), is conditioned to go to a GP for a `cure` today, they will suppress/treat your symptoms or refer you to a specialist who will help with suppression of symptoms, after a short time based talk. Suffering, it is understandable we will grasp at anyone who looks like offering support, once in the medical model system or loop it is challenging to break free.

    Also, many experiences and feelings of people who have been traumatized in some way,  who end up at the GPs surgery, are usually pathologised, when in fact they are having a spiritual crisis, (or experiencing a dark night of the soul), which feels frightening, without appropriate knowledgeable support in transpersonal matters.

    If any of you may want to try energy medicine, complementary therapies or transpersonal therapy, here are some of the methods for anyone to look at and ones I have used with some success, but it can cost and the allopathic orthodox-traditionally trained practitioner of today may not support your healing with these therapies and poo, poo,  methods and your questions, (it has to be expected), if you ask them about these alternative approaches, so it needs to be a  proactive role we take in our inner healing and searching out appropriate therapists for ourself  :-

    You can look at or search out Emotional Freedom Techniques (EFT) on the internet. EFT helped me, and I still use it often.

    Book:  The Body Speaks Its Mind, by Debbie Shapiro (1998)

    Book:  Complex Post Traumatic Stress Disorder, (leading Authority on CPTSD and sufferer) by Pete Walker MA (2013). He gives you tools for coping in the book, which was the first of its kind.

    Book: The Tao of Fully Feeling, Pete Walker (2015)

    Book : In Case of Spiritual Emergency,when there is no one to assist, Catherine G Lucas (2011)

    Book:  You`re  Not Going Crazy You`re Just Waking Up Michael Mirdad (2013)

    Book: You May Not Be Mentally Ill, Charles L Whitfield (2011) (Misdiagnosed and mistreated when adults are actually suffering from effects of  childhood neglect and developmental trauma and other later trauma,  so neuro developmental and patho-physiological results of growing up in certain environments affect their emotional and behavioural patterns and health. CPTSD is a normal reaction to an abnormal experiences. 

    Book: Healing The Child Within, Charles L Whitfield (1989)

    Book:   Healing Trauma (program for restoring wisdom to the body and exploring root causes of the symptoms, Peter Levine PH.D 

    Book: An Unspoken Voice of Trauma, Peter Levine (2010).

    Book :Developmental Trauma (2015), by Barry Weinhold

    Book: Stop Treating Symptoms, Heal The Hidden Cause, by Sandy C Newbigging (2013)

    Book: For Your Own Good (the roots of violence in child rearing), Alice Miller (1983)

    Book : Thou Shall Not Be Aware (society`s betrayal and cover up of the wounded child) Alice Miller (1990)

    Book: The Body Never Lies (physical illnesses are the body`s response to disregard of its needs, and emotional neglect) Alice Miller (2005)

    Try if you can to seek out a therapist or transpersonal therapist/counsellor/traumatologist or trusted genuine empathic other who can support your healing journey, which is your right. The way people are not being treated and supported empathically, is "Mans inhumanity to Man".




  • gillian72gillian72 Posts: 21Member Connected
    Omg I thought I was beginning to lose my mind till I found this post I to was abused in care ( I have never told anyone about what happened in there )I was there for about a year then my mum got me back then I was abused by a family friend aged 10 I reported it years later and it ended not enough evidence I attempted taking my life many times after went a bit wild got in with a bad crowd for a bit then moved away , about 4yrs ago my past was triggered since then I have slowly isolated myself to my bedroom I sleep with 2 knives under my bed an I hammer under my pillow but I know it's not right but can't help it , I have Health problems as well which doesn't help and I was meant to go to my pip appeal on Tuesday I never went my kids are fuming with me but I find it hard it go to ppl in authority because I always feel not believed no matter what the out come maybe but I can't help it if makes me feel ill so I can understand how everyone on here feels aswell 
  • SurvivingTaraSurvivingTara Posts: 44Member Pioneering
    So sorry gillian to hear about your experience in what should have been safe environments. Your inner child is so scared right now, and has been for some time. It does not feel good. There is nothing wrong with the innate good gillian self, it is what you have experienced which should never of happened, that has caused your fear and symptoms of abuse. I am believing more and more the therapists who can deal with this are being excluded from NHS arena, help has to come from private sector atm.I feel your emotional pain and empathize. It is not your fault at all, fault and shame lies with those who abused.
  • Didee51Didee51 Posts: 6Member Connected
    Hello! I'm new here 
    My name is Di and I'm so glad to have found this community. I've just been diagnosed with complex PTSD as a result of childhood abuse and trauma. Hope to gain some support and insight into how others are coping and offer any support I possibly can. 
  • SurvivingTaraSurvivingTara Posts: 44Member Pioneering
    Welcolm Didee.
  • Didee51Didee51 Posts: 6Member Connected
    Thank you so much! 
  • April2018momApril2018mom Posts: 2,275Member - under moderation Disability Gamechanger
    This thread is very helpful. Thanks for the list of book recommendations too! 
  • HollyGCatHollyGCat Posts: 64Member Pioneering
    Found the book 'The Body Keeps the Score' as suggested on audio on google.  Only listened to the first 15 mins.  Cannot believe how much I have in a common with a Vietnam survivor!!!  Would not have called that.  Though I was once an avid reader, I now cannot summon the concentration.  Audio much easier.  Just the statement 'feel dead inside' and I was startled by the list of symptoms of this former solider and his coping methods (unhelpful but work in the moment).  Thanks to everyone on here.  It is really helpful to have peoples experiences and feel like you are not alone in this.  Welcome to those who have just joined.  I hope we all keep this going as I already feel its going to help me:)
  • SurvivingTaraSurvivingTara Posts: 44Member Pioneering
    Wonderful Holly G cat, you found some info and had a wow moment of help. So important we have knowledge and support to empower us all against those who seek to miss the cause of our suffering and medicate our symptoms in an attempt to make us forget and supress us from saying  how it is or was. No more will us folks of suffering be victimised, talked down to and supressed because of our experiences at the hands of others. Why should we be hushed up to make it more comfortable for others?
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