I am Client Services Manager for PODS and as such I deal with all enquiries coming into the helpline, both via the phone and email. Since being in post it has really struck me how many people with a history of complex and severe trauma cannot get any help whatsoever via the NHS. Many are passed from pillar to post, either being told that they do not meet the criteria to receive services (they are not quite suicidal/traumatised/distressed/non-functioning enough) or that they exceed the criteria (they are too complex/suicidal/traumatised). This leaves people feeling understandably ashamed, powerless and frustrated, and is the subject of many, many calls that I receive.
The first thing I say to people is that the road to recovery is long and they need to persevere and fight for what they want. This is of course a tall order: after trauma, many people feel chronically disempowered, and fighting for anything (especially for themselves) feels counter-intuitive, even ‘dangerous’. Therapy when provided via the NHS is of course free, and that is the main reason why people seek it through this avenue. The Clinic for Dissociative Studies can sometimes provide assistance in obtaining funding from your local Primary Care Trust or Clinical Commissioning Group for them to provide therapy, and you can read about one person’s experience of this in Multiple Parts 6.2.
One of the main obstacles to getting help via the NHS is the lack of awareness of DID or acceptance of it as a valid diagnosis. Sometimes this is because the NHS in the UK favours the ICD-10 as the ‘diagnostic bible’ in which the older term multiple personality disorder is still used. Some people have found that they have been in a better position to push for treatment if they have something to take to their GP, psychiatrist or Community Mental Health Team to explain and validate their condition. PODS has therefore provided a resource entitled Information Leaflet for Professionals: Dissociative Identity Disorder which is available from the website here and which is a good introduction to the subject for professionals unaware of dissociative disorders.
Many people have also found it helpful to undergo dissociation screening tools, and these are available to complete free of charge on the PODS website at www.pods-online.org.uk/screening-tools. They comprise two questionnaires developed by experts in the field, called the DES (Dissociative Experiences Scale) and the SDQ-20 (Somatoform Dissociation Questionnaire, 20-question version), and they assess the likelihood of someone suffering a dissociative disorder. They do not provide a diagnosis as such, but they indicate whether further investigation is warranted. If you complete the tools on the PODS website, you will receive a letter within 7 days with a full explanation of the results. Some people have found it helpful to show this to their GP, CMHT or psychiatrist, along with the Information Leaflet. There is no guarantee that it will be well received—some Trusts have very specific pathways for treatment and no matter what evidence is put in front of them, they will not or cannot deviate from these pathways! But it is a worth a try, and filling in the screening tools can also be a validating experience in and of itself. It can also batter a hole in the wall of denial, however, so beware of any short-term adverse reaction!
But what do you do if all your attempts to get therapy via the NHS come to nothing? There is often a mistaken belief that all other sources of treatment will be expensive and potentially unaffordable. Fortunately, however, this is not always the case. To begin with, there are many voluntary sector organisations such as Rape Crisis and Mind who provide free or low-cost counselling. These operate nationally and so there may well be a centre near you which can help. Secondly, there are numerous local charities (including our own START Counselling for people in Cambridgeshire), and the PODS website lists a number of these at https://support.pods-online.org.uk/support-groups. Some may have waiting lists, but it’s better to get on a waiting list with something to aim for than do nothing at all!
The third option is the private sector. Many people think that only the very well-off or those with private medical insurance will be able to afford it, but this is not the case. Many therapists working in private practice are doing so because they have a real heart for people and want to be free to do their work without jumping through organisational hoops. When they are able to, many operate on a sliding-scale fee. Some will indicate this on their website or promotional material; others are willing to discuss this if you get in touch with them. Over the last few years PODS has been building a register of ‘dissociation-friendly therapists’. These are not self-proclaimed ‘experts’, but people in the voluntary or private sector who have some level of knowledge or awareness about trauma and dissociation (for example by attending training) and who are willing to work with clients with these issues. Some are highly experienced, whereas some are new to this field but are willing to gain the support and further training they need to do so successfully. There are currently over 1000 people signed up on this register, and they are based all over the UK. You can find details of people in your local area by filling in a form on the PODS website at www.pods-online.org.uk/find-a-therapist. PODS are not ‘recommending’ the people on the list as such—we are just providing a starting-point for your search, so that you at least know that these therapists are aware of dissociation. As with therapists available via other sources, such as BACP (https://www.bacp.co.uk/search/Therapists) or the Counselling Directory (www.counselling-directory.org.uk), you need to check out their qualifications and experience and whether you feel comfortable working with them. The big advantage of paying for therapy privately (even at a reduced fee) is that you have much more choice and a sense of empowerment in the process.
If all of these avenues fail, what then? Again, I would say that you should persevere. Just because you can’t find a suitable therapist now doesn’t mean to say that you never will. A plan is a good place to start. What needs to happen for you to get the treatment you need? Can you write down what needs to happen and be in place, and then break each item down into its various steps? For example:
I have been turned down for therapy on the NHS. There is a long waiting list for therapy via the local Rape Crisis. The local Mind are only providing six sessions, which I don’t feel is long enough. There were only a few people on the local PODS list and the ones offering sliding scale fees didn’t have spaces. What can I do?
- Ask to go on the waiting list for Rape Crisis
- Consider whether six sessions to work on some grounding strategies with Mind might be helpful. Think about it, talk to Mind about it, and then make a decision.
- Ask the private therapists who don’t operate sliding-scale fees how much they charge. Figure out how much of this I could afford, and if I can make any adjustments to my weekly budget to save towards it. Investigate if there are any other sources of help, or people or local charities who might contribute.
At the same time, bear in mind that therapy itself is not some kind of ‘holy grail’ or a form of magic. Psychotherapy is the recommended treatment approach for dissociative disorders and is certainly, in my experience and that of PODS’, the most effective way of seeing long-term, lasting change. But it’s important not to confuse ‘recovery’ with ‘therapy’. Therapy can help with recovery, but it is not recovery itself.
This therefore begs the question: what does recovery from a dissociative disorder look like, and how is it achieved? The diagnostic criteria in the DSM-V (the US-based diagnostic manual) states that DID is characterised by identity alteration and memory disturbance and that its symptoms cause clinically significant distress or impairment in functioning. One way of looking at recovery therefore is that it is about reducing this distress and improving functioning. How can this be achieved, and is therapy the only way of doing it?
I would argue that, while therapy provides the most supportive environment, much (although not all) of the effectiveness of therapy for dissociative disorders is in building a set of skills. These skills focus on reducing distress and improving the way that you handle day-to-day life with the identity alteration and memory disturbance central to DID. So some of the goals of recovery might include:
Reducing trauma symptoms
To reduce the distress of trauma symptoms, such as dissociation, flashbacks, body memories, and a hyper-responsive ‘danger’ response. Being able to come quickly out of a flashback, to be grounded in the ‘here-and-now’ and calm the body down using techniques such as breathing. To be able to identify triggers and plan how best to manage or resolve them.
- Affect regulation
To learn to feel, express and manage feelings better, in order to build coping capacity and widen a ‘window of tolerance’. To be able to make choices mindfully rather than being driven by out-of-control, painful emotions. To reduce self-harming and suicidal tendencies, and learn more adaptive coping strategies. To be able to think about thoughts and feelings and just ‘notice’ them, rather than being immersed in them, and to be able to choose how to respond to them mindfully. To develop the capacity to think flexibly, rather than rigidly, and to be able to problem-solve relational difficulties.
- Increasing ‘integration’ between parts
To be more in touch with all the different aspects or parts of yourself, with a better relationship and better communication, cooperation and co-consciousness between the parts of the self. To work towards parts pulling in the same direction, rather than being driven by conflict or ambivalence towards each other. To be able to appreciate the different survival strategies of parts and their function and meaning within the system as a whole. To begin to be able to tap into the skills, strengths and resources of each part without automatically switching to them.
These areas will be a focus for work in therapy, but how can you prepare for therapy, or begin to do some of this work yourself? Here are a few suggestions:
You may feel that you’re ‘losing your mind’ if you experience a lot of dissociation, especially what is known as ‘depersonalisation’ (feeling that you’re not real) and ‘derealisation’ (feeling that your surroundings aren’t real). This fear of ‘losing your mind’ can make it harder to manage your feelings, relax and cope with day-to-day life. It can therefore become a vicious circle. Reading and learning about how trauma impacts the brain can be really helpful in reassuring you that your symptoms are entirely normal and logical, and that you’re not going ‘mad’. This can be in the form of articles (the PODS website at information.pods-online.org.uk/all-articles/ has an extensive range), books and booklets or attending training courses.Along with understanding how trauma impacts the brain and body, learning grounding resources can be really helpful. The Emotional Resource Guide helps explain what is going on with flashbacks and how to handle them, how to manage triggers, and how to cope in a crisis. All of this information is vital whether or not you can access therapy—it’s just that, in therapy, you will have someone alongside to coach you in these skills.
Many people who have been abused find it really hard to be positive towards themselves and to take good care of themselves. Unfortunately, this just exacerbates the impact of the abuse and continues to make the brain feel that it needs to be constantly on guard against ‘abuse’—it’s not very good at telling the difference between abuse by another person or abuse by oneself. Self-harm and self-neglect are completely understandable in the light of a trauma history, and often feel ‘right’ and the best way to cope, but they will keep you in a vicious cycle. Many people need therapy in order to be able to really work this issue through, but in the meantime, can you take as good care of yourself as possible?This might include trying your best to have a healthy diet, doing manageable levels of exercise, including getting outside and preferably into nature on a daily basis, and restricting your intake of alcohol, caffeine and junk food. If that all sounds a bit simplistic, understand that I’m not saying that it will solve your traumatic past in and of itself. It’s just that every little thing helps a little, and your body and brain need to be in the best shape they can be if you’re going to be ready to really tackle the heavy duty stuff in therapy. What can you do to get into that mental and physical shape before therapy begins?
- Make yourself safe
After trauma, our bodies and brains are geared to focus on danger rather than daily life. Many people become hypervigilant, always scanning (even unconsciously) for danger, and feeling tense all the time. It’s difficult to relax, to switch off, and to fall asleep. It can feel like your tummy is constantly churning and you’re jittery and always on the edge of panic. This is a completely normal post-traumatic symptom. Often it requires therapy to really work this through—to recalibrate your nervous system so that your body can recognise that the danger is over. But what can you do in the meantime to make yourself feel more safe? Progressive relaxation and mindfulness meditation exercises have proven to be really effective, even if sometimes they feel quite scary or unfamiliar to do to start with. Sooner or later in therapy it’s likely that you’ll end up needing to do exercises like these, so if you can tolerate them, why not get a headstart? What else would help you feel more safe? Do you need to literally change your physical environment? Do you have places you can go where you feel safe? Are there people in your life that make you feel safe? Can you spend more time with them? Are there places and people in your life that make you feel unsafe? How can you spend less time there? Can you make a plan to increase how safe you feel in life?
- Identify the support that is available
The PODS helpline runs every week at set times, but I also speak to people at other times by appointment. Is this something that would help you, either as a one-off or more regularly? What about other sources of support? Can you build a supportive relationship with your GP? What about your community mental health team?—not necessarily so that they will ‘fix’ the problem or provide treatment, but just so that there are more people in your life who can help a little, and make you feel less isolated, or less unsupported. Are there any support groups that you would find helpful? Various organisations provide face-to-face support groups (see for example support.pods-online.org.uk/support-groups) and PODS also provides an online peer support forum (www.pods-online.org.uk/forum). What about courses—not necessarily mental health ones, but vocational ones? There are lots of mental health benefits from belonging to a group and focusing on an activity. Things like drumming or learning a musical instrumental, joining a walking group or art group, can all have some benefit. Again, they won’t treat the trauma and they won’t solve everything, but they can be part of a wider ‘recovery package’ that you build into your life. A recovered life—a life after trauma—has lots of good things in it, so can you start to plan now what kinds of things they might be, and take steps towards achieving them?
So much of the benefit of therapy comes from ‘mentalising’—the ability to think about what you are thinking and feeling. Journalling is a way of beginning to do this on your own, before therapy. Can you begin to reflect, and put into words what is going on for you, so that when you do eventually access therapy, you can hit the ground running? It can also help in the meantime by putting words to your feelings, which research shows is a powerful way of managing our emotions—we ‘name it to tame it’. Again, during therapy, many people benefit from the habit of journalling, so why not get ahead of the game?
More than anything, accessing treatment for a dissociative disorder requires faith and grit: faith that the help is out there and that you will be able to access it sooner or later, and grit to keep on holding onto that faith and taking steps, every single day, to work towards that goal. After trauma, it is normal to feel powerless and as if life is out of control. Recovery from trauma involves taking that power back, and so even the process of fighting for therapy is part of the recovery process, because rather than doing nothing (the ‘freeze’ response of trauma) you’re doing something—and recovery is just a series of steps, a series of small somethings.
Unlike with many physical problems, treatment is not something that is done to you: you cannot just pop a pill, or have an operation, and everything is made alright. Treatment for trauma is principally self-directed. A therapist is there as a navigator to help you find your way, but ultimately you are in the driving seat. Sometimes people don’t take some of the steps they could to progress their own recovery, because they are fixated on the idea that therapy itself is the answer: or rather that a therapist is the answer. They are hoping to find someone who will ‘fix’ them, who will make it all better for them. Unfortunately, therapy doesn’t work like that. Therapists are not magicians, and good therapists don’t do their clients’ work for them! You get out of therapy as much as you put in. Recovery is all about the hard work that you put in, and that includes the process of getting therapy in the first place, as well as all the other ways of improving your situation that I’ve listed above. It can be a hard slog, but it’s worth it in the end, and recovery really is possible!
In the meantime, if there’s anything we can help with you, please don’t hesitate to contact me by email or on the helpline phone.