West London Mental Health Services
London, England, UK
The experience below is about discrimination within services. Rosalind, Co Founder of Monarch Butterfly shares the content of an email that she sent to a healthcare professional recently. Rosalind challenges him after attending a course he co-facilitated provided by her local Health Trust within which he shared rather unhelpful and invalidating views of Personality Disorder and BPD, this is the view point of one healthcare professional within the service and not necessarily the view of the Trust itself.
Shared on 6th October 2014
A response was received by Mike (name changed) on 7th October 2014
Sent to the recipient on 2nd October 2014
Re: Recovery Hub Course Delivery
Dear Mike (name changed),
My name is Rosalind, I attended the course yesterday on race, ethnicity and mental health.
First of all I thank you for your input into the recovery hub, I note that you are passionate about the development and access to services that empower individuals to take control of their own recovery. I applaud that and had certainly found the MBT class that was run by Monica and Tania to be excellent and wrote a small piece about that for the MCN News magazine quite recently.
I want to share my thoughts with you further to your sharing of your own views on ‘personality disorder’ whilst you were co-delivering the course yesterday. I respect that you have your own opinions and are more than entitled to have those views, what I am concerned about is that you have used what one would hope to be an empowering and positive platform to openly share what some may see to be an invalidating point of view, and moreover it is not based upon sound evidence.
I noted you say, quote:
“personality disorder is not a mental illness”
a disease or period of sickness affecting the body or mind
When another member of the group rather vigorously referred to the DSM inclusion of PD you then said, quote:
“At one point ‘prostitution’ was also included in the DSM”
It is interesting and (in my own opinion) inappropriate, for you to have referred to this example to (I assume), make a point that ‘because something is in the DSM, it does not necessarily make it an illness’?
I am all for a proactive movement that empowers those with any form of disadvantage, however I too know that there needs to be a middle ground where we accept that a ‘dis-ease’ or period of sickness affecting the mind needs to be embraced for what it is before true healing and understanding can come about. You mentioned at one point ‘your reluctance to refer to labels’ or ‘illness’ (paraphrase), having a diagnosis or accepting that you have an illness does not qualify you for the scrap heap, this is the very stigma that national charities are attempting to stamp out. In some instances labelling can be liberating and offer an opportunity for those struggling with mental illness to embark upon part of their journey toward recovery via that commonality shared through diagnosis.
I asked you why you would refer to PD as not being a mental health illness and you said:
Quote: “It is not treated pharmacologically”
I referred to some cancers being treatable via conventional medicine and some terminal cancers being untreatable, it is still cancer and still and illness or disease/ dis-ease of the body whether it can or cannot be treated with drugs.
It appears that there is a culture or theme that is being filtered through the West London Mental Health Trust and it is now becoming clearer as to why this may be the case. I have personally experienced a lack of support from the Trust and a lacking in understanding of BPD in particular, if this view that you have openly spoken in a group of people is shared within the Trust it answers a host of questions and confusion I have had to date as to why the support and understanding has been lacking.
You have used a platform to share your own views that are not based upon sound evidence or research, they are your views and that is all. If you want to share your views in your own time in your own space with those that are willing to hear your views then that is fantastic, however, it is not appropriate for you to share those views on a platform that is in place to promote education, growth and advancement.
I have listed below some links for your perusal.
Borderline personality disorder (BPD) is a serious mental illness marked by unstable moods, behaviour, and relationships. In 1980, the Diagnostic and Statistical Manual for Mental Disorders, Third Edition (DSM-III) listed BPD as a diagnosable illness for the first time. Most psychiatrists and other mental health professionals use the DSM to diagnose mental illnesses: NIMH
Borderline personality disorder (BPD) is a serious mental illness that can be challenging for everyone involved, including the individuals with the illness, as well their friends and family members. BPD is characterized by impulsivity and instability in mood, self-image, and personal relationships: NAMI
‘Back from the Edge’
Those with lived experience of PD share their personal experience, alongside healthcare professionals that are delivering evidence based information on BPD, present it as a ‘serious illness’ and ‘medical disorder’:
Response received on 7th October 2014
Apologies it has taken a while to get back to you, but I have had very limited access to my emails since last week.
Thank you for your feedback, it is always helpful to hear how people feel about the material that is presented. I am sorry that the course did not meet your expectations and that you found some of the material upsetting. There are a number of differing perspectives and understanding of mental health and illness and the purpose of the course was to explore these. It certainly wasn’t my intention to invalidate other perspectives, but to alert people to alternatives. I obviously failed in this endeavour on this occasion. It is also worth pointing out that the content of the course wasn’t developed by myself, but through a co-production process, so the ideas presented were not necessarily representative of my own beliefs.
Thank you for offering alternative resources to look at, I am always keen to develop my own understanding, so I am grateful for you taking the time to do this. I will certainly be looking through the links you have provided. It would also be great to draw on your knowledge and experience in the future to help with the development of future programmes.
Mike (name changed)
Final communication from Rosalind to Mike (name changed), 7th October 2014
Hello Mike (name changed),
Thank you for your response, I know you are busy so I appreciate you taking that time out.
I think the issue here is not that ‘the course did not meet my expectations’, I have not made that point in my previous communication with you. It is my view that the course material and delivery does need some reconsideration, it is a new course and adjustments may, I am sure, be an exciting prospect, however that was not my point to you in my previous communication.
The course was not about Personality Disorder or Borderline Personality Disorder, that was not part of the course ‘curriculum’ per se. So, we can see, this is not about the course not meeting my expectations or the content being lacking in some way.
You shared your own views, which of course you are entitled to have, however the platform used to share those views was inappropriate.
As you will know, ‘mental health’ difficulties can attract a stigmatised view from both the ‘undiagnosed’ and ‘diagnosed’, this is also an unfortunate truth for both non healthcare professionals and healthcare professionals. The course attendees have mental health difficulties, that does not mean that they are unimpressionable, they may not be ‘educated’ on Personality Disorder and thus may be open to receiving and accepting unhelpful or alternative views (not based on research) as a definitive truth. That was my point.
You also referred to ‘prostitution’ having been in the DSM, that was completely unhelpful, I do not see how you could have thought that anyone in that room would have benefited from that comment, other than to strengthen your own view point. You certainly sparked a debate and a reaction, however that was not edifying to the purpose of that group, that is a whole new discussion (that would take days to cover). Valuable time was taken from those attending to learn about R, E and Mental Health, I am confident that was not your intention.
The DSM alongside ICD-10 is what keeps many healthcare professionals employable and Healthcare Trusts running as a business, they have a reference source that has drawn upon multiple schools of thought and research that shapes the content that is used for diagnosis; leading to understanding, access to relevant services, support, peer growth and signposting..
I am glad you accepted this feedback diplomatically and professionally, that is all one could ask for. Thank you.
All the Best,