Trying to get a proper diagnosis

[Kizzie]

I'm from Canada Paul and fortunately did not encounter a problem being diagnosed and that was almost 6 yrs ago in NS.  I now live in a rural part of BC now and when I moved here 5 yrs ago my new GP knew about CPTSD and has supported me throughout.  So I don't think it's that Canada's care sucks so much when it comes to CPTSD, it's lacking everywhere because it is new. For far too many of us, trauma trained and experienced mental health professionals for either publicly funded or private treatment just aren't outside of major cities as yet.

I did find a psychologist here after much looking but it is a 50 minute drive and is not covered by public health care.  Fortunately I have some private insurance although that doesn't go far at $190/hr. 

Unfortunately we have to advocate and push for better treatment, services and support everywhere if the members her are any indication.  We do have info sheets and forms here you can take with you to appts to make your case and also start a paper trail as sj and others have suggested.  The handouts by the Blue Knot org are really great as they were written by a medical doctor and professionals respond to that.

[Paul57]

It is in the ICD 11 at https://icd.who.int/browse11/l-m/en#/http://id.who.int/icd/entity/585833559

[Boatsetsailrose]

Hi paul yes it is i was pleased to find it and have printed off several copies in my glee

[Three Roses]

(just an FYI - the ICD-11 will not take effect until 2022

ICD-11 will be presented at the World Health Assembly in May 2019 for adoption by Member States, and will come into effect on 1 January 2022. This release is an advance preview that will allow countries to plan how to use the new version, prepare translations, and train health professionals all over the country. 

Ref https://www.who.int/news-room/detail/18-06-2018-who-releases-new-international-classification-of-diseases-(icd-11)

[Boatsetsailrose]

Thank u three roses...makes me curious of how the uk will prepare and how prevalent training will be for health professionals ? I would like to start researching about this ...

[Kizzie]

Just had an academic article come across my desk titled "The replicability of ICD-11 complex post-traumatic stress disorder symptom networks in adults" which has been or is about to be published in the The British Journal of Psychiatry (Knefel et al).

The abstract confirms that researchers are actively engaged in investigating CPTSD based on the definition in the WHO ICD-11, despite it (the ICD-11) not being formally released until 2022. This could form the basis of a request for the diagnosis, I don't know.       

Just as an aside, the researchers looked at symptoms in four countries and determined that they are for the most part stable across both culture and type of trauma:

The ICD-11 includes a new disorder, complex post-traumatic stress disorder (CPTSD).... Despite differences in traumatic experiences, symptom severity and symptom profiles, the networks were very similar across the four countries. The symptoms within dimensions were strongly associated with each other in all networks, except for the two symptom indicators assessing aspects of affective dysregulation. The most central symptoms were 'feelings of worthlessness' and 'exaggerated startle response'. Conclusions:  The structure of CPTSD symptoms appears very similar across countries. Addressing symptoms with the strongest associations in the network, such as negative self-worth and startle reactivity, will likely result in rapid treatment response.

[Libby183]

It's a real concern, I think. With my new circumstances, I think I might need an official diagnosis. Any diagnosis, really. Because I might need to access more support. I am not very hopeful and really rather scared. I know what a struggle you have had, Boatsetsailrose. It shouldn't be like this, should it?

[Boatsetsailrose]

How interesting kizzie confirms what we all.experience here very similar symptoms against similar or.different history experience of trauma ..
Yes the prevalence of the worthlessness hole in the middle of the injuries....
Researchers please research away wondering how i could place myself to be part of studies

[Boatsetsailrose]

Hi libby
Yes getting the right help and treatment can be a long road for us. I see it that we are continuing to pioneer the way forward for not only ourselves but also  others to walk a potentially easier path. Getting good and effective  support and both non and clinically sound good information has been so important for me  along the way to inform my next move. Ive had many periods of being so unwell its been harder but have always kept going overall in the bigger picture. As is the case with any health problem some will get better recognition than others , some will have lower access and narrow treatment options and some will win out and get effective care that reduces the symptoms of cptsd and improves individuals quality of life. I see that its doing the best we can to get the support we need to then push forward with expanding the healing. .  I'm so glad i can come here through it all..and this community of us is here ..
Advocating for ourselves armed with the resources and information alongside being able to articulate what the internal and external experiences are like living with complex.ptsd and a  dose of right place right time right professional or healer is the formula that seems to have held me in best stead. its a big ask for an unwell person but as it stands in the world its what's generally  required. ..
I believe this can and  will change over time and im so pleased at the direction of recognition /  treatment for cptsd is heading in ...if one person one day in the future doesn't have to advocate so much for themselves and gets taken 'care' of quicker than we have then its evolving ..
Imagine a world where young people and doctors are educated enough to spot it and treat it as medics do diabetes or high blood pressure .... Mental health still.has a long way to go and even though the royal family are now advocating for better treatment and less stigma (lol) in the uk as a society we have leaps to take ...
Finding the ones who.can help us no matter how long or far the journey is my life's mission

[Kizzie]

its a big ask for an unwell person but as it stands in the world its what's generally  required. ..

It's a huge ask Boats, you're so right, especially given right now we have to convince others about what we know in our hearts we are suffering from.  And given our trauma this is incredibly difficult because we have been left feeling  powerless, hopeless, have been taught to be silent, not make waves, have been minimized and invalidated....  It's only as we begin to recover that we can speak and advocate more for ourselves as you know only too well.

Personally what I'd like to see is an organization for trauma survivors that has chapters in various countries with volunteer survivors and others who will help trauma survivors navigate through the health, legal, justice, and social systems, something that's so difficult to do when we are at the beginning of recovery. I know social services are supposed to do much of this, but for the most part they seem to be overwhelmed in most countries and don't know much about Complex Trauma just yet.

For now though just by drawing more attention to the diagnosis when & where we can we are educating others about what we need/want and that is going to foster change.   

[Boatsetsailrose]

Kizzie agreed a global organization on the ground supporting people to navigate . ..that experience survivors gain to help others priceless ..
I have got some of that via Acoa and that is how i found out about  a charity who provided me with trauma specific support for no cost...

[Kizzie]

     That's exactly what I'm talking about Boats, wouldn't that be awesome?

And just to bring this back to Paul's original post, having peers in the same area would make exchanging  info about which professionals/organizations know about CPTSD, where we were diagnosed and by whom, etc.,  so much more possible.   

[waylay]

Mention of sexual assault.







I was very lucky to find a trauma-informed counsellor who only charges me 10GBP per week. Well, I say very lucky.... It was through Rape Crisis, so. Have you tried looking for trauma-informed MH providers who do sliding scale fees and will work over the internet? I often have pain/mobility/fatigue problems, so we often have sessions over Skype. Just be very careful - there are many "therapists" online who aren't actually qualified as counsellors. Good luck!

[Eyessoblue]

I belong to a few cptsd support groups on Facebook and on one there were a few people from the uk saying they had just had the official cptsd diagnosis  yet when I talk to my psychologist about it she says she knows all about cptsd and thinks that's my diagnosis but because it's still not officially recognised she still has to treat it as ptsd. This is frustrating, I think it must depend on which area in the uk you live and maybe what the therapists are trained to treat? I don't know, that's just what I think, but it is annoying that people in the other side of the country are understood yet I'm still being treated for something else although they know that isn't the case!! 

[Kizzie]

Unfortunately it is a bit of a transition time for us all over the world b/c the diagnosis isn't officially out there.  You could mention to your T that it has been accepted by the WHO Member States although the official version won't be published until 2022.  As I mentioned in an earlier post, it may/may not help but perhaps worth a try. It might also help to find out who was diagnosed where in the UK and let your T know that as well?   

This is a bit of an aside Eyessoblue but I can always add the info for those groups in our "Resources" section if the groups so wish.  The more local support out there for us the better.