The new Mental Health Strategy For Scotland 2012-2015 has been published, you can find the full text here.
I didn’t take part in the consultation process, I wanted to- my copy of the consultation document is still in the filing cabinet, with notes in the margins, Post-its and sections highlighted. Unfortunately at the time of the consultation my own particular set of skills were required to fight the bloody, protracted battle with NHS Fife for the correct diagnosis, care and treatment. I never got to collate my response and submit it.
It broke my heart that I once again found myself incapable of doing something I could do and do well due to mental ill health. I still feel robbed of what I had and I’m still incredibly angry with all those ‘professionals’ I had to deal with who in spite of being presented with someone who clearly knew what she was talking about, failed to believe her, failed to take appropriate action and watched her lose everything. There are many things I will never get back.
I may be here less often than I was but I’m still here and I’m still as passionate about all the things I was passionate about before mental illness took over. I care about people, society and equality and I’m prepared to fight for those who cannot fight for themselves. I’m happy to stand up and be counted, to say my piece to try and bring about change. I always have been people just stopped listening to me.
It’s very painful when you realise that no matter how well constructed your argument is however rational and informed you are and no matter how loudly you state your case- it doesn’t matter if no-one is listening. Not being heard for all that time has damaged me, there’s barely a day goes by where I don’t feel the pain of being ignored.
But enough about me, my grief and my new-found emotional fragility, I have a therapist to help with that. Let’s get down to business.
I have read the new mental health strategy; I could write many responses to it and indeed cannot rule-out many, different responses to it appearing here on the blog over the coming days. I was trying to be generous when I set-out to read it; I thought it was too ambitious to expect that dissociative disorders would be addressed at all. I was prepared to base my response around the proposals to address trauma disorders- PTSD, C-PTSD, DDNOS and DID.
I changed my mind and I have the Scottish Government to thank for this, for reminding me that stigma, even self-stigma is damaging.
Section 4 of the strategy addresses stigma-
4. Extending the anti-stigma agenda forward to include further work on
The work that has been taken forward in Scotland through see me is internationally recognised as establishing best practice and has been learnt from and adopted throughout the world
There is a need to build on this success by developing the work further to focus on the experience of discrimination and exclusion that many people with mental illness experience;
There is also the need to focus attention more directly on stigma and
discrimination in health and social care services, which is where service users often tell us they feel the most discriminated against.
And commitment 4 tells us what the Scottish Government intend to do-
Commitment 4: We will work with the management group for see me and the Scottish Association for Mental Health, who host see me, and other partners to develop the strategic direction for see me for the period from 2013 onwards.
I encourage anything that helps fight the stigma against mental illness and I’m pleased by the second point raised in the strategy that recognises that it is the mental health system that stigmatises us the most. What I’m less pleased about is the Government’s commitment to work with SAMH (Scottish Association for Mental Health) and see me- two organisations that both fail to acknowledge dissociative disorders in their publications. I’ve asked SAMH in the past why this is and they have failed to answer.
That is stigma. How am I and others like me going to be protected from stigma if the organisations who claim to help represent us and claim to help tackle stigma do not recognise we exist?
There is a section on trauma within the strategy-
The relation between trauma and mental illness is complex. Across the lifespan trauma is a relatively common phenomenon and many people have experience of single life-threatening events, or longer-term traumatic circumstances, without suffering significant psychological harm. However, some do suffer harm and that harm, while rooted in the psychological trauma, may manifest in a variety of mental health problems including depression, addiction or physical symptoms.
While there is a growing recognition of the significance of trauma, clinicians and others may be reluctant to engage with it because of the concern of causing further harm, or of not being able to offer an appropriate response which meets the needs of the person. We need to address that deficit and improve the general service response to trauma.
The Rivers Centre in NHS Lothian has been commissioned to investigate the issue of staff awareness of trauma-related mental health disorders in primary care. The work will begin with engagement with a number of GP practices in NHS Lothian with different experience and circumstances. A consultation process will follow with the RoyalCollege of General Practitioners and with representatives of NHS Education for Scotland.
The objective of this work is to develop an approach designed to raise the awareness of primary care practitioners of post traumatic disorders, facilitate best practice management of post traumatic disorders and improve identification of available local resources and services for onward referral. This approach will be piloted in the same GP practices as are involved in the first stage study. The pilot data will be analysed, modifications to the training package will be made in consultation with the RoyalCollege and with NES, and, if appropriate, a wider rollout plan will be designed.
NHS NES will continue to develop and deliver a range of training courses to support staff working across the tiers of the stepped care system, including psychoeducation for complex trauma, trauma-focussed cognitive behavioural therapy and Working with Dissociation in Survivors of Trauma.
The Scottish Government is also supporting the UK Psychological Trauma Society to develop and support a national learning network for trauma practitioners and services working in Scotland.
It raises some good points. The link between trauma and mental illness is complex, clinicians are very reluctant to address trauma and an increased awareness of psychological trauma is essential for those working in mental health. I’m pleased to see that the focus on raising awareness in primary care of psychological trauma and its impact is a priority.
I’m less pleased with what the government propose to do, The Rivers Centre, commissioned to investigate the current situation deal with depression, anxiety and PTSD. Dissociation is a symptom of PTSD and indeed it even gets a mention- but only as a symptom of trauma disorders. Dissociative disorders are trauma disorders, they just happen to be at one end of the spectrum.
Similarly the UK Psychological Trauma Society deal exclusively with PTSD and address dissociation merely as a symptom.
I have no reason to be confident that any of these interventions will raise awareness of complex trauma disorders and dissociative disorders in primary care or anywhere else.
Commitment 18 therefore, whilst overall being welcome is largely meaningless to me and others like me.
Commitment 18: We will develop an approach to support the better identification and response to trauma in primary care settings and support the creation of a national learning network.
Dissociative disorders, contrary to popular belief aren’t rare, from the PODS website-
Dissociative Identity Disorder (DID) may affect as much as 1.5% of the population (Johnson et al, 2006). That’s just under 1 million people in the UK. At least a further 3.5% of the population may suffer from another dissociative disorder, which equates to a further 2 million people
They are however rarely recognised, very rarely diagnosed and almost never treated correctly. Dissociative disorders are caused by trauma- severe, enduring trauma that begins in early childhood. Nowhere in this document is childhood trauma and its effects on adult mental health addressed. Had I developed my trauma disorder as a result of war, accident or natural disaster I may find some hope in this document. I lucked out; I peaked too soon and sustained my trauma from very early childhood.
There is one final section of the strategy where I hoped it would redeem itself and actually become relevant to me, the section entitled-
Health Improvement for People with Severe and Enduring Mental Illness
Dissociative identity disorder is both severe and enduring, however I know that I remain under ‘acute care’ with my LMHT (locality mental health team) as, and I quote “The severe and enduring team don’t do DID”. I didn’t even bother to read the section.
I’m not surprised but I am disappointed that once again dissociative disorders have been overlooked. By not addressing them in the strategy the Scottish Government has given carte blanche to the mental health profession to continue in their current vein of ignorance and the inequality will remain. It’s not that the information doesn’t exist or the experts don’t exist or the organisations don’t exist, it’s that to all intents and purposes we don’t exist.
I would like to see a cross-party group on complex trauma disorders and dissociative disorders established within the Parliament, I would like people and politicians to discuss dissociative disorders the same way other topics are discussed.
In the absence of NICE guidelines to offer guidance and protection for those of us with dissociative disorders, we need something statutory. We deserve to be taken care of the same way as everyone else.
So you see, I’m calm, rational, intelligent and have ideas to offer. I’m willing to speak-up, willing to fight and willing to say my piece.
But I am only one part, one member of a system of dissociated identities, according to the majority of the NHS mental health system and my Government (though I didn’t vote for this specific one) I technically don’t exist so who’s going to listen to me?