Getting help with dissociative identity disorder

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Where can I go for help with dissociation and Dissociative Identity Disorder?

by Rob Spring

Many people struggle with the effects of dissociation and DID for a long time, sometimes many years, before feeling able to pursue any real help. Unfortunately, gaining access to treatment is not easy! There is help out there, but certainly not enough of it and it can take a long time to access it. Over the last decade in particular, awareness of dissociation and DID has been growing, but it will still be a long time before all mental health professionals – such as psychiatrists, psychologists and psychotherapists – fully accept DID, and are then sufficiently trained (and willing) to work with it.

How do I get help?

Getting help depends to a large extent on a number of factors including your financial position, the support network around you, and your previous history of involvement with local mental health services.

First Steps

There are two screening instruments which you may find it helpful to complete. These are the DES (Dissociative Experiences Scale) and the SDQ-20 (Somatoform Dissociative Questionnaire). These are available online and can be completed and scored yourself if you are able. Two examples of where to find them are:

DES: http://counsellingresource.com/lib/quizzes/misc-tests/des/

SDQ20: http://www.psychotherapist.org/SomatoformDissociation.html

A better alternative is to contact The Pottergate Centre for Trauma and Dissociation, who will send these screening instruments out for you to fill in. You can then send them back and Pottergate will score them for you, and return them with a standard letter which can be shown to a GP or other professional. If your score is high enough, the letter will say something along the lines of “This person is likely to have a dissociative disorder but this can only be confirmed by having a full assessment.” This is not a formal diagnosis but it is a first step and will at least indicate the likelihood of you having a dissociative disorder. Nearly 500 people currently contact Pottergate each year for this service, which is provided free of charge.

After this initial step, what you do will depend on your individual circumstances.

The treatment of choice for a dissociative disorder, according to the ISSTD (International Society for the Study of Trauma and Dissociation) is long-term relational psychotherapy, and ideally this will be the bulwark of your recovery programme.

There are two routes to accessing psychotherapy – you can either fund it privately, or you can try to persuade your NHS Primary Care Trust (PCT) to pay for it.

Private therapy

If you are not already involved in psychiatric services and you can afford it, paying for therapy privately has a lot of advantages, not least your choice of therapist and some element of control over the length and frequency of treatment, and we generally advise this where possible.

You do not need a diagnosis of DID to access therapy privately. The ‘label’ can simply be helpful so that both you and your therapist have a framework for understanding what is going on, and can develop an appropriate treatment plan.

In seeking privately-funded therapy, it is essential to look for someone who either has experience of working with DID, or someone who is fully aware of DID and is both willing to work with it and learn a lot about it! The prognosis for DID is very good – in fact better than many other serious mental health conditions – but there is no quick-fix, and most DID survivors are in therapy for well in excess of 5 years. Therapists working with DID are often prepared to offer more than the standard 50-minute session once a week that is typical in the counselling world. One of the key areas of work with DID is in reversing the effects of ‘disorganised attachment’, and this often requires longer sessions and contact between sessions. Good supervision for the therapist is also very important.

At the moment there is no publicly-accessible national database of therapists who are able or willing to work with DID or dissociative disorders. That is something that PODS may be working on in the future and for the time being we will try to put you in touch with therapists when we can. Failing that, you can get in touch with the following organisations as they may know of a therapist in your locality: The Pottergate Centre, The Clinic for Dissociative Studies, The Bowlby Centre, Deep Release, or TAG.

Private therapy does not always mean huge expense – some therapists operate on a sliding scale basis for people on low incomes, and occasionally voluntary organisations, some counselling centres, or Rape Crisis Centres are able to offer free or low-cost counselling.

If you are already in therapy and dissociation has begun to reveal itself, often the therapist can become anxious that this is beyond their competence level and that they need to refer on. For some therapists, this may be the case, but others simply need some additional support. In this case, do encourage them to contact either the Pottergate Centre or the Clinic for Dissociative Studies, who may be able to advise them and encourage them in how to continue working with you. They may for example be able to suggest a supervisor who can support their work with you more effectively. There is a clear consensus that it is the relationship between client and counsellor which is key to success. The counsellor or therapist therefore does not need to be an expert but they do need to be willing to think outside the box and learn – both from you, the client, and from training, books, peer support and supervision. They also need to be willing to commit to long-term work, as therapy for DID is never brief.

NHS

For people unable to either afford or find a private therapist, the only remaining option is to seek help from the NHS. Additionally, people may have already been involved with local psychiatric services for several years, and thus their treatment path has already been established.

Due to widespread ignorance of dissociative disorders, a DID survivor may go undiagnosed or misdiagnosed for a long time – some studies suggest that it can take an average of 7 years to gain a correct diagnosis. One reason for this is unwillingness on the part of some psychiatrists and other professionals to accept that DID is a genuine condition, and sometimes this rests on which diagnostic manual they use. DID is a clear diagnosis within the DSM-IV, the Diagnostic and Statistical Manual (version 4), but this is used more widely in the USA than in England, where psychiatrists tend to favour the ICD-10 (International Classification of Diseases, version 10). The ICD-10 does not refer to DID, preferring instead the more outdated term ‘Multiple Personality Disorder’.

The most common misdiagnoses for DID include bipolar, affective, psychotic, seizure, and borderline personality disorders. Sometimes DID may be ‘comorbid’ or appear alongside other symptoms or conditions, including the above and others such as depression, eating disorders and self-harm. It is eminently possible to have DID and another major mental health problem as well, so having one does not rule out the other.

The ISSTD Guidelines on Treatment of Dissociative Identity Disorder in Adults states: “A careful clinical interview and thoughtful differential diagnosis can usually lead to the correct diagnosis of DID (Coon, 1984). Assessment for dissociation should be conducted as part of every diagnostic interview, given the fact that dissociative disorders are at least as common, if not more common, than many other psychiatric conditions that are routinely considered in psychiatric evaluations” (2011). Unfortunately this is rarely the case at the moment in this country, but it is good at least to see that the ISSTD are pushing this.

Therefore getting a diagnosis, let alone appropriate treatment, is not easy. It is possible but it often takes some persistence. Your first port of call will be your GP who will be able to make a referral to a mental health professional. However, most GPs will not be at all aware of dissociation or DID, so it is often worth taking some literature with you. The MIND booklet Understanding Dissociative Disorders (available direct from MIND or here) is a very good introduction, and the results of screening tools offered by the Pottergate Centre are also useful in being able to give you a professional ‘back-up’ rather than it looking like you have just read something on the internet and diagnosed yourself!

Why get a diagnosis?

A formal diagnosis by a psychiatrist will be essential if you are hoping to get help through the NHS. Primary Care Trusts (PCTs) or psychiatric services are sometimes willing to fund an assessment before deciding what treatment to offer you. This can be a very difficult and long process. There may be a huge amount of resistance in your local mental health services and to be successful you may have to be very persistent. Many people who have succeeded in getting appropriate help have had to fight to get that help. Some have gone to their MP, or contacted a mental health solicitor, or submitted a complaint, and been dogged in following these up.

If your PCT is willing to fund a full assessment for a dissociative disorder then this may be carried out internally, or you may be able to persuade them to involve the Pottergate Centre or the Clinic for Dissociative Studies. If you cannot persuade your PCT to pay for the assessment, you also have the option at least with the Pottergate Centre of paying for it privately if you can afford it, but this is certainly not cheap: a full assessment, where you have a previous psychiatric history, costs £1200. If you do not have previous involvement with psychiatric services, you may be able to have the cheaper assessment which is currently £500.

Based in Norwich and run by Remy Aquarone, the current President of the ESTD (European Society for Trauma and Dissociation), the Pottergate Centre offers the assessments mentioned above, which are conducted using the SCID-D (Structured Clinical Interview for Dissociative Disorders) and are carried out by a psychotherapist and psychiatrist. Once a diagnosis of a dissociative disorder has been made, the PCT may ask Remy to formulate a treatment plan or advise and train their mental health team on how best to work with you.

The Clinic for Dissociative Studies, run by Valerie Sinason in London, is an Independent Provider to the NHS and does not see patients privately. You have to be referred to the Clinic by your GP or local psychiatrist. The Clinic then writes to the Commissioners in your local area to see if they will fund an assessment, which is usually essential before they may agree to fund treatment. The Clinic provides an assessment with three professionals – a psychotherapist, a psychologist and a psychiatrist – all of whom take dissociative disorders (and ritual abuse) very seriously. They each write a report which goes to the Clinic Director who then can recommend treatment at either the Clinic or somewhere else.

Conclusion

It is not guaranteed that a diagnosis of DID will lead to you receiving appropriate help from your mental health services. This is where some people have had to continue to fight for help. There are also downsides to a diagnosis, including problems with obtaining life insurance once DID is on your records. Diagnosis in our view should be seen as a means to an end – that of receiving the treatment that you as an individual need. It is not a requirement of treatment if you pay for therapy privately.