Complex PTSD and no help available — Scope | Disability forum
Find out how to let us know if you're concerned about another member's safety.

Complex PTSD and no help available

wildlife
wildlife Member Posts: 1,308 Pioneering
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.  
«13456718

Comments

  • wildlife
    wildlife Member Posts: 1,308 Pioneering
    edited August 2017
    @Sam_Scope Hi Sam or anyone else who can help. When is the Mental Health advisor next due online, please ?
  • jose2
    jose2 Member Posts: 126 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  




       
  • wildlife
    wildlife Member Posts: 1,308 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
  • jose2
    jose2 Member Posts: 126 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    
  • wildlife
    wildlife Member Posts: 1,308 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. 
  • Matilda
    Matilda Member Posts: 2,610 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.
  • wildlife
    wildlife Member Posts: 1,308 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.
  • Liam_Alumni
    Liam_Alumni Scope alumni Posts: 1,105 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
  • Christabelle
    Christabelle Member Posts: 3 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.
  • wildlife
    wildlife Member Posts: 1,308 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. 
  • Christabelle
    Christabelle Member Posts: 3 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.
  • wildlife
    wildlife Member Posts: 1,308 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.
  • wildlife
    wildlife Member Posts: 1,308 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.. 
  • RebeccaMHadvisor
    RebeccaMHadvisor Member Posts: 99 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

  • wildlife
    wildlife Member Posts: 1,308 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.  
  • RebeccaMHadvisor
    RebeccaMHadvisor Member Posts: 99 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
  • wildlife
    wildlife Member Posts: 1,308 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.  
  • Matilda
    Matilda Member Posts: 2,610 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.
  • wildlife
    wildlife Member Posts: 1,308 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.
  • Matilda
    Matilda Member Posts: 2,610 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.

Brightness

Complete our feedback form and tell us how we can make the community better.