Complex PTSD and no help available

RebeccaMHadvisor

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

wildlife

@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..  

wildlife

@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. 

RebeccaMHadvisor

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 

wildlife

RebeccaMHadvisor

I will check that book out @wildlife

[Deleted User]

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_Alumni

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 jo@samaritans.org.

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.

chefdave

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]

@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

Alex

Hi [deleted user],

I will email you about deleting your membership.

Thanks,
Alex

PatrickCam

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.

Waylay

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

Waylay

My last comment was rather poorly written, sorry!

laverne

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. 

JeremyJ

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_Alumni

Welcome to the community @JeremyJ, and many thanks for sharing your experience with us!

Pippa_Alumni

Welcome to the community @laverne, I hope today is as kind as possible to you. I wonder whether @RebeccaMHadvisor could offer any input here?

azalight90

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

littleruthie123

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