Accessing therapy is often one of the hardest challenges faced by those with Dissociative Identity Disorder not only here in the UK but across the world, people find it difficult to not only find the right therapist but also the funds required to resource this vital and necessary method of treatment.
In the UK people are either faced with trying to fund therapy themselves which is no mean feat, or navigate the perilous route of NHS funded therapy, with lengthy waiting lists and time restrictions on the number of sessions and type of therapy treatment allowed.
The recommendations from International Society for the Study of Trauma and Dissociation (the ISSTD) suggests the primary treatment modality for DID is usually individual outpatient psychotherapy, more information on the treatment guidelines can be found at http://www.isst-d.org/, with the average duration of therapy being between 3 and 5 years.
Such suggestions are of out the realms of normal talking treatments available on the NHS, and have financial implications for healthcare trusts and Clinical Commissioning Groups. However people with Dissociative Identity Disorder deserve the right to have their treatment available within a timely manner on the NHS.
I have come to realise that often accessing appropriate treatment is a postcode lottery, many professionals have never heard of Dissociative Disorders before, and some are even sceptical about there existence. So accessing NHS treatment is a minefield all of its own. In other countries similar issues exist with many people having to navigate the perilous route of trying to get there insurance or health plan to cover the cost of treatment, this is therefore a worldwide issue affecting those with Dissociative Identity Disorder.
As therapy is a long term treatment option, paying for therapy yourself is an expensive option that many cannot afford, I am aware of people having to work just to pay for therapy, whilst others have to sacrifice simple luxuries like trips to the cinema, or new clothes just to fund therapy.
For me my journey to access treatment has been a challenge, I simply wasn’t in any position to fund therapy myself and have had to rely on the NHS. This has meant an often complex myriad of funding requests to Clinical Commissioning Groups, evaluations, and then waiting inordinate amounts of time whilst decisions are taken. Once funding is agreed then comes the search for a therapist. In my own local area there wasn’t a suitable NHS member of staff available to treat me and thus they had to search for a suitably qualified person within the private sector.
Initially I had a Psychotherapist who saw me regularly, but after a couple of years things began to go array and we realised we were no longer moving forwards and after much debate and discussion that contact was ended. Thus followed further battles for funding, more evaluations and eventually a decision to fund a new therapy provider. This again needed to come from the private sector as my local trust still had no one able to treat me and so then a new search began, now I have no input in any of this, I am totally at the behest of the local NHS trust who were tasked with locating a therapy provider.
All I could do was wait and wait and wait, the time taken to sort out this whole mess, from my ending sessions with the Psychotherapist to starting with my new Psychologist meant I was without therapy of any kind for 10 months, in that time I spiraled downwards and began to self harm once more. I was left struggling for survival and there wasn’t any support system put in place to help. The healthcare system negating its responsibility to care, my only source of help were my family, close friends and the amazing support provided by the Samaritans.
Eventually a Psychologist was found who worked within the NHS in a neighbouring trust and they also worked privately too, excitedly I thought it would be straight forward once they had been located but of course this is the NHS and I now realise nothing is straight forward. Contracts had to be drawn up, and there was what appeared to be a stand off between the local CMHT who thought the funders were dealing with the contract, whilst the funders in turn believed the CMHT were sorting out the basics of this contract. Meanwhile as the service user I was left floundering in the middle, stuck in an abyss and going nowhere.
After having to get a solicitor to intervene and my family actually calling the commissioning person direct, it was finally resolved and we started to see our current Psychologist. Thankfully things are going well so far and I am hopeful as we start to move forwards and learn more about myself and my alters.
I know I am lucky, I get my treatment on the NHS and its funded, but even now I am aware that budget restrictions and changes in Government policies could easily destabilse that situation and therapy could once again be in jeopardy. I am certainly on a time limited provision, they have allocated a set period of time in which I have to progress and if at the end I haven’t got far enough, or require further treatment then a new battle for funding will I assume have to be initiated.
Is this the right way for our society to treat people who are in need and who through no fault of their own now require talking therapy, I would suggest not.
There needs to be a change in how dissociative disorders are viewed by the medical profession, better education and understanding, improved training for existing and trainee psychologists, improved access to talking therapies and being more open and realistic about the length of treatment required. Most crucial of all I feel that there needs to be a change in how service users are viewed, instead of blaming the service user for their treatment needs its time we recognised the challenge of providing and delivering therapy is nothing compared with the challenges of living with DID.
Copyright DID Dispatches 2014