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Any Complex PTSD and Dissociative Disorder people?

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StillIRise
StillIRise Community member Posts: 178 Pioneering
Hi, I'm a new member.  I have been diagnosed with Complex PTSD and Dissociative Identity Disorder, both caused by severe trauma and sexual violence during childhood.   Although I was diagnosed with these conditions 15 years or so ago, it has been a battle to get any treatment from the NHS at all.  
Finally last year I got referred to Secondary Care who eventually offered me approximately 9 months of EMDR therapy.  This therapy will finish in a couple of months and the psychologist has stated that my trauma is so severe that I need several years of therapy to recover BUT that the NHS is only allowed to offer these few sessions once every three years.  
He openly admits that I will not be "well" or recovered when we end our treatment in a couple of months.

Do I have any say in what happens next?  Can I insist that Secondary Care do not discharge me back to the GP given that I'm clearly still very unwell and can't even take care of my basic needs?

Comments

  • L_Volunteer
    L_Volunteer Community Volunteer Adviser, Scope Member Posts: 7,983 Disability Gamechanger
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    Hi @StillIRise. Welcome to Scope's forum. It is great to see you have joined us.

    You have been really brave in sharing this with us. I thank you because I recognise you are already active in reaching out for support on the forum. This takes courage, especially when you are new.

    You are doing so well! It sounds really difficult that the therapy will not be sufficient for supporting you with your Complex PTSD and Dissociative Identity Disorder. 

    I will try to address your questions in turn.

    Do I have any say in what happens next? From reading EMDR Association's info it would seem your GP is best placed to answer this. Having said that, I recognise you mentioned this is all the NHS can provide. It seems to be about accessing it through external resources, such as private healthcare or targeted services.

    Can I insist that secondary care does not discharge me back to the GP? You could mention that you do not wish to be discharged back to the GP if this is something you would feel comfortable with. Having said that, there are no guarantees but they could work with you to discharge you to / refer you to a more appropriate service.

    I hope this at least semi-helps. Another resource you might find helpful is NAPAC which specialises in supporting people (particularly adults) to recover from childhood abuse. 

    Please don't hesitate to let us know if there's anything else we can do to support you. Take care for now and we will look forward to, hopefully, hearing from you again soon  :)
    Community Volunteer Adviser with professional knowledge of education, special educational needs and disabilities and EHCP's. Pronouns: She/her. 

    Please note: if I use the online community outside of its hours of administration, I am doing so in a personal capacity only.
  • Taliesen
    Taliesen Community member Posts: 51 Courageous
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    @StillIRise I have complex ptsd from childhood abuse and its really hard to live with at times, I've been in therapy for 4 nearly 5 months now  which is kinda helping but still early days with counciling.

    I had major battles with secondary care and being with mental health team full stop as they kept saying I was too complexed for them to help.

    I've been discharged for just over a year now. I use to try to get admitted for my own safety and then they would turn round and make out im not that bad, which was contradive to what they originally said. 

    I'm alot better in some ways and others haven't changed, I'm hoping this councling help but I would need it for a few years.

    I am in a c/ptsd community called aftersilence where anyone with c/ptsd can go.
  • L_Volunteer
    L_Volunteer Community Volunteer Adviser, Scope Member Posts: 7,983 Disability Gamechanger
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    Thank you for being so brave in sharing this with us @Taliesen. I am sure your experience will be invaluable. 

    It sounds really difficult that you have experienced similar though and are still in the early days of counselling. How are you feeling about and managing everything at the moment?

    You certainly deserve to feel validated. It is super important that you do what you need to take care of yourself and stay safe  :)
    Community Volunteer Adviser with professional knowledge of education, special educational needs and disabilities and EHCP's. Pronouns: She/her. 

    Please note: if I use the online community outside of its hours of administration, I am doing so in a personal capacity only.
  • punchnJudy64
    punchnJudy64 Community member Posts: 233 Pioneering
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    I have ptsd after leaving a bad marriage. I do struggle at times. Helpful to know there’s more of us out there. I feel pathetic at times xx
  • L_Volunteer
    L_Volunteer Community Volunteer Adviser, Scope Member Posts: 7,983 Disability Gamechanger
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    Not pathetic at all @punchnJudy64, even if you do feel that way. You are brave just acknowledging how you feel, let alone also being able to express how you feel.

    How are you coping at the moment and is there anything, in particular, you find helpful when you are struggling with PTSD?

    You are definitely not alone. We are all here for you and listening to you  <3
    Community Volunteer Adviser with professional knowledge of education, special educational needs and disabilities and EHCP's. Pronouns: She/her. 

    Please note: if I use the online community outside of its hours of administration, I am doing so in a personal capacity only.
  • punchnJudy64
    punchnJudy64 Community member Posts: 233 Pioneering
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    I like doing my home and garden as he controlled all that but now I can do it I don’t have the money, which is fine. I have some lovely friends nd company does help. I find reading great too and obviously my rescue dogs. They will always come before me, 
  • punchnJudy64
    punchnJudy64 Community member Posts: 233 Pioneering
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    I’d love to have the confidence to go out one evening but panic sets in and I’m stuck in the bathroom.
  • CharlieRose256
    CharlieRose256 Community member Posts: 68 Courageous
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    Hi I’m very very late to this, but I also have DID (dx), and have recently been approved for funding under the Clinical of dissociative studies. I strongly recommend others with this condition go research them, and if not getting adequate treatment and support off the nhs, ask for a referral to them.

    https://www.clinicds.org.uk/
    They/them/she/her pronouns please.
  • shellbell20
    shellbell20 Community member Posts: 260 Pioneering
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    I was recently diagnosed with Complex PTSD relating from childhood. I am glad I finally got a diagnosis for my depression and severe anxiety. However, each day is a struggle, I have around 20 anxiety attacks per day, even though I am on anti-depressants and propanonal. I don't leave home as I am scared all the time through my anxiety. I wouldn't wish it on my worst enemy as each day is pretty miserable. My psychologist has finished our sessions because I moved in April and she wants me to get help locally as she cant do what she wants for me to help me being miles away. I have a new doctor and the mental health nurse is ringing me up early November. I am trying my hardest though to work on my low self esteem caused by childhood trauma.
  • vicdon
    vicdon Community member Posts: 13 Listener
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    Hi me to I have cptsd .are u on high rate pip 
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