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Fighting for support from CMHT for CPTSD doing more harm than good

Kirstie

Hello all, I was wondering if anyone has any advice or can relate. 

I am under the care of the CMHT with diagnosis of ASD, PTSD and GAD. I used to function quite well but in the last two years have completely lost functioning and been unable to work, study, lost friendships and become pretty much house bound. The CMHT accepted my referral and said I was in the right place to be treated but since then I  have just waited on a waiting list for 7 months with no treatment. I queried this and asked what I am actually waiting for and who is responsible for my care (as I have a care plan but no coordinator). This led to an assessment with a psychiatrist who clearly didn't understand Autism and focused solely on 'just autism' telling me I just need 'lifestyle changes' that 'painting is good for autism' and that I should be referred back to 'the autism specialist in primary care' I explained this does not exist and I am actually seeking treatment for PTSD not autism though it is a dual diagnosis ASD/PTSD which requires treatment to be tailored. I said to him I am getting increasingly frustrated with healthcare professionals not understanding autism and he said 'well, autism is hard to understand".

After the appointment I got a text for an online partner organisation offering 8 weeks of CBT framed as a choice to reduce my wait time???? This seems to be a step down bak to primary care and I also don't want CBT. I have bee through talking therapies numerous times which haven't worked. I paid privately for 5 years trauma therapy (which didn't work and made things worse as I didn't know I was autistic then and neither did the therapist).

I have asked to be referred forward to a specialist organisation or charity that offers trauma treatment to autistic adults rather then going backwards to primary care but fighting with the system is fast becoming a significant source of trauma making the situation worse. The CMHT makes me feel like I am faking illness, not worthy of support or not ill enough, but primary care says I am too complex.

I want to just avoid healthcare completely as its too stressful and seems to make me feel worse, but I also really feel my mental health is going downhill and self-help strategies are not working as  I feel too unwell to engage with them. 

What next? Does anyone have any ideas, and is this common? I have asked to choose a different provider under right to choose rather than moving back to primary care and involved NHS trust feedback team. Maybe something will come of this but I actually wanted support, not to exhaust myself further by having to fight a system and I don't even know what I am fighting for at this stage if the treatment doesn't even exist or you can't have it on the NHS.

Exhausted and confused. If the NHS won't treat PTSD then I wish they would just say that rather than messing me around. The recent NHS adverts advertising talking therapy if you are struggling with PTSD make me want to scream. Treat the people on the waiting lists before you advertise your non-existent treatments!!!

Parents

  • Have you seen this charity service, which can be accessed via Right to Choose? Perhaps you could explore whether it might be an example of a suitable option with your GP? 

    ”Respond provides specialist psychotherapy services for people with learning disabilities and autistic people who have experienced trauma.”

    Respond - Accessing psychotherapy

    “Under NHS England’s Right to Choose policy, people in England may be able to request therapy with Respond instead of using a local NHS service, provided:

    • They have a diagnosis that aligns with our specialist areas (for example, trauma, learning disabilities, autism).
    • They would prefer to receive therapy from a specialist provider like Respond rather than the service offered locally.

    To explore this option, people can speak to their GP or referring professional and ask to be referred under Right to Choose”. This is different from an Individual Funding Request (IFR), which is used in more exceptional circumstances.”

    I’ll also just share the NAS’s related advice page:

    NAS - Post-traumatic stress disorder (PTSD)

  • in reply to Bunny

    Thanks so much Bunny, yes I have heard of Respond and this is the pathway I think might help and the charity I want the CMHT or GP to refer me too under the Right to Choose. Hopefully they will refer me here or somewhere similar. Thanks for commenting with this as this is exactly what I thought too as a way out of the primary/ secondary care passing backwards and forwards. I will push for this and fingers crossed I might be referred. Thanks for taking the time to share the info :)

  • in reply to Kirstie

    I think there's a lot of misunderstanding about PTSD in general and cPTSD in particular, theres a perception that PTSD only effects military personel who've seen active service, plus some emergency workers, but not the general public. cPTSD is even less understood, it seems to be agreed that it exists and often stems from prolonged exposure to abusive situations, but what to do about and how it can be helped, it seems like no one knows. I have cPTSD and have tried looking for help, I've been offered EMDR, which seems to be like CBT with more bells and whistles, but it's not really suitable for cPTSD as it's not related to a single incident or to an unusual situation like combat that might take place over time but be confined to a particular arena.

  • in reply to Kirstie

    I think there comes a point where having more theraputic interventions become picking at scabs and opening old wounds. I understand why therapists to look at traumatic incidents, but it's unhelpful when most of your theraputic time is taken up with things that are as dealt with as they're every going to be at this moment in time, so you feel unable to move forward. I've learnt to be really firm with those who want to dig into old wounds, its not that I won't talk about them and how they may relate to whats happening now, I just don't see the point of opening up an old wound whilst theres one bleeding away and festering right in front of them.

  • in reply to TheCatWoman

    I agree with you and I am sorry you suffer with cPTSD as well. Have you read Pete Walker's book on cPTSD 'From Surviving to Thriving'? Is really good and differentiates it from PTSD, I think he came up with  identifying the 'Fawn' response in addition to Fight/ Flight/ Freeze and I think about this in terms of masking and being compliant. He also argues that cPTSD has roots in childhood trauma and severely affects emotional regulation throughout life. 

    You make a good point about EMDR, I was hoping that it might help me and seems to be the most evidenced based treatment, but I agree I wouldn't know which trauma to start with as there have been so many and when the trauma is related to ongoing interpersonal and social difficulties, or inability to thrive or cope with overwhelming environments it seems like the trauma will just be ongoing anyway. I am also at a point where trying to access help now causes trauma in itself as it leads to feeling dismissed and rejected and unable to be helped. I think EMDR can be used to treat cPTSD but probably over a much longer time - unlikely to be funded by NHS and hard to fund yourself as its so expensive.

    I find wild swimming really helpful, that's the best therapy I have found to calm down as yet, and medical cannabis! Maybe this is the way forward, not dealing with CMHTs and systemic issues. 

Reply
  • in reply to TheCatWoman

    I agree with you and I am sorry you suffer with cPTSD as well. Have you read Pete Walker's book on cPTSD 'From Surviving to Thriving'? Is really good and differentiates it from PTSD, I think he came up with  identifying the 'Fawn' response in addition to Fight/ Flight/ Freeze and I think about this in terms of masking and being compliant. He also argues that cPTSD has roots in childhood trauma and severely affects emotional regulation throughout life. 

    You make a good point about EMDR, I was hoping that it might help me and seems to be the most evidenced based treatment, but I agree I wouldn't know which trauma to start with as there have been so many and when the trauma is related to ongoing interpersonal and social difficulties, or inability to thrive or cope with overwhelming environments it seems like the trauma will just be ongoing anyway. I am also at a point where trying to access help now causes trauma in itself as it leads to feeling dismissed and rejected and unable to be helped. I think EMDR can be used to treat cPTSD but probably over a much longer time - unlikely to be funded by NHS and hard to fund yourself as its so expensive.

    I find wild swimming really helpful, that's the best therapy I have found to calm down as yet, and medical cannabis! Maybe this is the way forward, not dealing with CMHTs and systemic issues. 

Children
  • in reply to Kirstie

    I think there comes a point where having more theraputic interventions become picking at scabs and opening old wounds. I understand why therapists to look at traumatic incidents, but it's unhelpful when most of your theraputic time is taken up with things that are as dealt with as they're every going to be at this moment in time, so you feel unable to move forward. I've learnt to be really firm with those who want to dig into old wounds, its not that I won't talk about them and how they may relate to whats happening now, I just don't see the point of opening up an old wound whilst theres one bleeding away and festering right in front of them.