More than 7 Years to diagnose PTSD,now still no treatment in sight!!

I am new here. I am hoping someone reading this can help .....

I have been unwell for more than 7 years going to the GP for all sorts of unrelated physical symptoms. I am 46 and for 3/4 of my life I have been absolutely healthy and functional. Over the 7 years I discovered after so many tests that the issues were not from a physical source, I concluded then they must be mental. So I self referred to IAPT and discovered I had chronic depression. I have worked hard to get better and two years ago I manage to overcome the depression by stabilizing my mood(without meds). But I kept feeling worse experiencing extreme anxiety, panic attacks,health anxiety, somatization disorder. Last year I got fed up, because I knew something major was creating all these complications and my GP seemed not to care or know. In fact I was told it was old age when late thirties is NOT what I consider old!!!However one thing all GPs have in common is their willingness to dose up patients with anti depressants even though they seem to know little about the subject!

I finally started researching myself and discovered I have PTSD following a major trauma more than 10 years ago. After discovering this, I went to my GP and his hands were tied as he said (I changed surgeries since and have got the same type of attitude from them too).I had to find out where I could get treatment and had to get my CMHT liaison to get my the funding from CCG, as my GP mucked up the first referral request. I finally got the assessment AND the funding, but had to wait a year just to get the diagnosis from when I discovered myself what was wrong. Now the assessment has happened and I do in fact have PTSD with several complications as I have gone so long undiagnosed and untreated. I have been offered 18 months treatment but need to know when I can start.It it took 2 months to get the diagnosis letter and that is because I complained to PALS otherwise the wait have been longer as no one is manning the administration side of the Stress and Trauma Unit of the hospital.

I have used up all the complaints procedures and it has got me nowhere and just wasted my time. I have got in touch with a social worker, an advocate, my MP, etc....I think the only person I haven't yet contacted is Jeremy Hunt!!! I have left no stone unturned and have been very pro-active in my recovery and search for diagnosis and treatment. I am self employed, but I am struggling, I need help. I have done so much by myself to get better and that is a testament to my resourceful because despite the symptoms I have done more for myself than the whole bunch of time wasters whose job it is to help people in need of help.

I am sick of excuses that NHS is overstretched. It isn't : it has a culture of waste and I have seen that first hand myself.  My PTSD has affected every area of my life: from my ability to work, to not having friends or relationships etc...Basically I do not know what having a normal functioning life has been like for the last 7 years. I feel overwhelmed and so stuck.And I feel alone in my struggle, because no matter how much help I seek it seems like I do more for myself than others whose job it is to help people like me.

I would appreciate knowing if anyone has been through the same? My saving are running out and I need help as I am now starting to notice OCD behaviour which a new complications. Realistically PTSD needs to be treated and will get worse over time. But now I have done the job of the so called specialists and diagnosed myself and have now a verified diagnosis it seems like the battle is far from over, as it doesn't seem like I will be treated any time soon, seeing as I haven't even been told if I am on the waiting list seeing as no one picks up the phone or responds to letters or emails in the Psychiatric department where I am waiting to be called up for treatment.

Any ideas would be welcome. I don't have the money to go privately otherwise I would. The Parliamentary Health Ombudsman took more than a year to look at my case and now I suspect they will not be upholding the GP complaint as they have already told me they feel 7 years of not being diagnosed or treated is reasonable even though PTSD is easily diagnosed and treatable.They think that despite that I self diagnosed correctly and I was the one who told the GP where I needed to be referred to to get treatment they feel the GPs have done all they could. While all they could translates into nothing as I did the work, not them.

I am at my wits end.I don't know what more I can do to get treatment. I know I will get better if I get the help I need, as I have done so much for myself already.  


3 Replies

  • Firstly, well done on being resourceful IMO the only way to manage your health - medics are merely advisors, although  most people act passively and let them have total control.

    I suspect that you will have been down this route but have your tried MIND - they will have come across this many times and may just have a suggestion or two.

    Rather than contact Hunt I would contact NHS England Chief Executive   Simon Stevens - the CCGs (Clinical Commissioning Groups) who commission the local service, or not as the case maybe, are performance managed by  NHS England.

  • PTSD is linked with Auto immune diseases, have you ever had any Thyroid bloods done shaehepburn ?  

    Vaccines can cause autoimmune problems.

    Hormone levels ? 

    Cortisol Levels (adrenals) ?

    Vitamin levels ? low vitamin levels can cause problems too, all interconnected, if low in thyroid levels you can be low in vitamin and iron/ferritin levels too.

    Too many thyroid patients are being 'missed' or overlooked and not getting the correct treatment or no treatment at all.  

  • Hello shaehepburn,

    Find yourself a good Counsellor / psychotherapist, perhaps from the "Human Givens" school of psychotherapy. A good therapist will know what techniques to apply to your problem. Especially for PTSD the "re-wind" or "theatre techniques" are popular

    Other methods, for example "Cognitive Behaviour Therapy (CBT)" are popular in some circles. Indeed even within the NHS, CBT may be available for (I think) up to 6 weeks free of charge.

    Some say though that CBT requires more than 6 weeks to be sure of success. And Some say CBT is largely ineffective. This seems unlikely as it would be unlikely to have found the degree popularity that it has without some merit.

    Drugs; avoid completely until psyschotherapeutic techniques have been tried and found wanting.

    The best way of determining whether your therapist is a good one or not is that you should feel better after your appointment than you did before. some psychotherapy methods require that you should lay yourself bare talking over your experiences of any trauma that qute likely resulted in PTSD.

    No! Frequently re-living your trauma by endless talking about it will re-enforce your painful memories deepening your psychological pain. Some psychotherapists will say the opposite. You should be able to tell by applying the happy test. How did you feel at the end as opposed to the start of your appointment.

    Regarding paying for private help, some therapists offer cut price appointments for those who are financially disadvantaged. Also, some therapists will take perhaps a year before they expect to complete treatment. Some expect half a dozen or less.

    There is such a lot written about these things that it would take far more time than you have available to read through it all. You could do worse than to start to trawl through the web looking for references to “Human Givens”

    Good luck with whatever you choose.


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