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Complex PTSD and no help available

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  • azalight90
    azalight90 Community member Posts: 6 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?
  • littleruthie123
    littleruthie123 Community member Posts: 511 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 
  • azalight90
    azalight90 Community member Posts: 6 Listener
    Fantastic. I hope you can get the right care that you need and deserve. 
  • littleruthie123
    littleruthie123 Community member Posts: 511 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 
  • azalight90
    azalight90 Community member Posts: 6 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. 
  • littleruthie123
    littleruthie123 Community member Posts: 511 Pioneering
    Ridiculous isent it 
  • azalight90
    azalight90 Community member Posts: 6 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. 
  • littleruthie123
    littleruthie123 Community member Posts: 511 Pioneering
    Wow all these red tapes and non funding is pushing people intoo despair and desperation ?
  • debbiedo49
    debbiedo49 Community member Posts: 2,904 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. 
  • azalight90
    azalight90 Community member Posts: 6 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.
  • debbiedo49
    debbiedo49 Community member Posts: 2,904 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 .
  • susan48
    susan48 Community member Posts: 2,221 Disability Gamechanger
    @debbiedo49, I have started a thread, called FINALLY,
    its about my own battle to get MH treatment. 

    Dont give up fighting x
  • newborn
    newborn Community member Posts: 832 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        (!)
  • Waylay
    Waylay Community member, Scope Member Posts: 973 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.





  • newborn
    newborn Community member Posts: 832 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.
  • feir
    feir Community member Posts: 397 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?
  • newborn
    newborn Community member Posts: 832 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.


  • newborn
    newborn Community member Posts: 832 Pioneering
    I just put a careful post up, went to edit it instantly, but cannot recover it.
  • TWil
    TWil Community member Posts: 1 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
  • SurvivingTara
    SurvivingTara Community member Posts: 56 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.





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