In the aftermath of the 2004 Tsunami, treatment for UK trauma sufferers was expected to be supplied by the NHS with some small financial support from the Red Cross to allow access to more specialist treatments. The following is a slightly edited version of an email interchange with one sufferer, describing her experience of attempting to access these services...
Q) Initially, did your GP arrange for you to see the local NHS funded facilities, or did someone come around to assess you first?
My GP arranged for me to be visited by the NHS Mental Health team in February 2005 for initial assessment. As a result I was visited by a Counsellor (who I only saw once), and a Community Psychiatric Nurse who I saw every 2-3 weeks. I continued to see my GP monthly.
Q) At what point did you find out or get directed to JC, the specialist trauma psychiatrist (who operates, I think, totally in the private sector) ?
Mid May 2005 (and I assume agreed between GP and Psychiatric Nurse) I was referred to a Psychiatrist for further assessment. The Psychiatrist, as well as changing my medication and consulting with my GP and the Psychiatric Nurse, confirmed that I needed specialist Trauma Therapy and directed me to JC. My first appointment was in June 2005. As far as I am aware JC operates predominantly in the private sector but is used by the NHS – I know that he does some work with HM Prisons and the Ambulance Service.
Q) Was the funding for JC provided by the Red Cross?
The Mental Health team initially secured a small amount of funding for my Trauma Therapy. When this ran out I was advised that no further funds were available from the NHS but there was funding available from the Red Cross. I think (although I can’t really remember specifically) my GP and JC both spoke to the Red Cross to secure the funding.
Q) What then is the role of the NHS psychiatric resources? are they, in some nominal way, supervising the treatment? does/did JC send them a regular report?
I continued to see the Psychiatrist until roughly December 2006 (can’t remember exactly!) where we would discuss my therapy and medication. The last time I saw him he advised me that he would write to me with my next appointment, but I never heard from him. I did not do anything about it as I felt I was not gaining anything by seeing him, and my GP monitored my medication.
Q) At some point the Red Cross funding came to an end. How were you informed?
Quite simply, I was not informed. The first I heard of it was when JC mentioned that the payment had stopped – he had been seeing me for several weeks free of charge. This must have been in July 2006 as I wrote a letter to him at the end of July advising that, I would pay him a fixed amount per month, regardless of how many hours I saw him for.
Q) Did we go back to the Red Cross to get the funding turned on again? do we have anything in writing?
I never had anything at all in writing from the Red Cross about funding, or indeed stopping the funding, for my therapy. The only contact I had was from Rosie Murray about the Hardship Fund – nothing to do with the funding. I did not pursue this as I felt that there were more “needy” people than me – I do, after all, have some money coming in and a roof over my head. As for going back to them about getting funding turned on again, the answer is no, I certainly didn’t have it in me (and still don’t!) to try and fight it.
Q) How much treatment have you had from JC off your own bat? hours and costs (up to April 2008)
To date, I have paid JC £2,400 – we have an agreement that I pay him a fixed amount per month regardless of the number of hours I see him. I usually see him once a week for two hours – sometimes less (holidays etc), sometimes more (particularly bad times).
Q) How many hours have you spent with him in all?
Lots and lots, and virtually impossible to work out! In the early days I saw him 2 or even 3 times a week, but now once a week for 2 hours.
Q) I know you had to see the NHS people from time to time - how frequently? helpful or just going through the motions?
I feel totally let down by the NHS people – and told my GP this last time I saw him. Once I started seeing JC I stopped seeing the Psychiatric Nurse (which I instigated as knew he was useless!). The Psychiatrist never came back to me with an appointment (even though I did feel I was just going through the motions in seeing him anyway). I only see the GP once a year now, he asks about therapy and reviews my medication.
Q) It would be nice to know how much there is in the way of treatment options for trauma in the UK, private or otherwise. One of the things Tessa (Tessa Jowell, replying to a question at the 2008 AGM) was implying is that there is a lot of pseudo treatments out there - in other words it is not shortage of funding but (unfortunately) shortage of facilities.
Ooooh that makes me so cross! Yes there is a shortage of facilities but SURELY that is even more reason why someone (like the Red Cross???) should be pointing people in the right direction, rather than just hoping that the individual manages to find someone themselves and, in the meantime, potentially getting even more “screwed up” by the pseudo-practitioners and treatments!
Q) Finally, is there anything else you want to say?
Yes, the chances are the people suffering the most from PTSD, who really need help, are the least likely to be able to ask for it. When I heard from JC that the Red Cross had pulled the funding it really made me feel that they thought I was a fraud. In the letter I sent to JC I said:
“…I have had very mixed feelings since I learnt from you that the Red Cross were no longer funding my therapy. I was actually shocked and disappointed that no-one from the Red Cross had even had the courtesy to contact me directly to let me know. Of course my initial reaction was to speak to them – but how do I do that when my scrambled head still makes it virtually impossible for me to make a simple telephone call…even to my closest friends? I thought of e-mailing, but didn’t know what to say. The idea of having to justify myself or plead for funding appals me. I know, and the people who know me best, know that I am not a fraud, but that is exactly how it has made me feel.
Bit by bit, much of the help and support that was there early on in this nightmare has been severed and, ironically, it’s now that I probably need it the most. Trauma, and the affects of it, is a lonely, daunting, unfathomable, frustrating and, at times, extremely bleak journey. Many people are succinct in their opinions – “I should be over it by now / I should be back at work / I should move on / etc etc” – but they have no concept, no factual idea, of the hell that trauma is. I care what people think about me and how they judge me. It is a bizarre but true fact that if I had broken arms and legs people’s attitude would be so different – there would be tangible evidence for them as to why I am unable to get out and about, work etc. The fact that I physically look ok makes it all the harder - perhaps I should adopt a bandaged head?!?!
Fortunately for me, you are one of the few people who really know what I am battling through and, true to your word at the very beginning, have not given up on me. I am mystified, yet immeasurably grateful, that you have continued to see me with no financial remuneration – it is a truly selfless gesture, thank you. However, the way I see it, you should not be bereft of payment because of a failing in our NHS and Mental Health systems…that is my problem….”
Says it all really. Thanks to Tania for allowing us to publish this piece.