Mental health: learning from the real experts

9 Aug 2019 Nick Garbutt    Last updated: 9 Aug 2019

Pic: Unsplash

There is a growing trend for health professionals to acknowledge that patients and their families are experts by experience.

This may have been a long time coming, but it is welcome for a number of reasons. It empowers people to take more responsibility for their health transforming their relationship with the system from one of “being under doctor’s orders” to a more productive partnership.

It also acknowledges that however well qualified medical professionals may be, more often than not their knowledge comes from what they have read and what they have seen. What is missing is the lived experience of the conditions they are seeking to treat.

Nowhere is this more important than in the field of mental health, where misunderstanding and misdiagnosis are still all too prevalent.

Later this month a ground-breaking two day course is being held to help professionals better understand Borderline Personality Disorder (BPD).  Borderline Personality Disorder: What Happened To Me? aims to help those in the health system understand best practice from the perspective of people with the condition.

The course has been designed and will be delivered by Nicole Devlin, a consultant at MindWise and Karen Bester, Lead Peer Educator for the Belfast hub of a new cross-border Recovery College.

Nicole, who has been diagnosed with BPD, has a history of self-harm and has had long term psychiatric inpatient treatment. Karen has a diagnosis of BPD and bipolar disorder with psychotic features.

Their course was first run in December last year and the feedback from the professionals who attended was universally positive. Testimonials included:

  • “I have a better understanding of why those with BPD feel/behave as they do;
  • “I now feel I have better communication skills when working with those with BPD diagnosis;
  • “I will be recommending this as a compulsory training course for my team.
  • “Lots of light bulb moments for how/what I can pass on to colleagues.”

The course has a wider significance. People with personality disorders are amongst the least understood and worst supported in society.

The condition affects one in 16 of us and those with it often face bleak prospects. They are commonly stigmatised, experience high levels of long term unemployment, homelessness and alcohol and substance abuse and, on average their lives are 19 years shorter than the rest of us.

Even the medical term is controversial – many complain that it in itself is stigmatising, characterising those diagnosed as suffering from personality disorder as difficult.

Nicole is one of them She said: “It has a really bad name. I  don’t agree with the term personality disorder. There’s a lot of negativity associated with it – people assume that those with BPD are attention-seeking and manipulative. I believe that my condition is a complex form of PTSD, caused by trauma.”

Personality disorder is itself a complex area and controversial area, not just to those diagnosed with the condition but also to professionals.

Broadly speaking someone diagnosed with a personality disorder has attitudes, beliefs and  behaviours that can cause long standing problems in their life.

Typically he or she will feel unable to trust others, or may feel abandoned, causing unhappiness to themselves or others. They will struggle to start or keep friendships and to control their feelings and behaviour and these problems will have continued for a long time.

What can make this even more challenging is that problems can be exacerbated by health professionals who sometimes do not offer appropriate support because they see people with personality disorder as being difficult and judge them on their behaviour, rather than the underlying condition.

To complicate matters still further professionals recognise up to 15 different types of personality disorder – although this methodology is sometimes disputed because people can display characteristics of more than one type.

The Northern Ireland Personality Disorder Strategy uses what many might consider insensitive language to categorise personality disorder into three clusters: “odd or eccentric”, “dramatic, emotional or erratic” and “anxious and fearful”

Borderline Personality Disorder is in the second of these categories.

According to the NHS symptoms include:

  • emotional instability (this can involve severe mood swings, including suicidal thoughts and it is quite common for people with the diagnosis to feel empty a lot of the time);
  • disturbed patterns of thinking or perception;  
  • impulsive behaviour (this can include self-harming);
  • intense but unstable relationships with others

Stressful and traumatic events when growing up, and especially in early childhood  are believed to be primary causes of BPD, consequently Nicole and Karen’s course has a strong focus on trauma.

She added: “We got a great reaction to the course we ran in December and would like to run it as often as we can. It has been built from a lot of research with both professionals and those with the lived experience. The fact is that there are too many people who are not getting a good service from the system and we believe that this course will help promote understanding.”

At the December course one of the delegates stated that an important learning from undertaking the training was: “Treating the problem and not the symptoms; Those with BPD are just “normal” people needing some extra support.”

This illustrates just how important Nicole and Karen’s work is. People with BPD are often stigmatised, not just by members of the public, but also by medical professionals.

Promoting a greater understanding of what it is like to live with the condition, what helps to alleviate symptoms and how people can deal with BPD long term is essential.

You’ll not get that out of a book, but by listening to the real experts: those for whom BPD is a reality, people whose struggles and triumphs are important lessons for us all.

The Work Wise Borderline Personality Disorder: What Happened To Me? training programme will be held at the MindWise offices in Belfast on August 20 and 27. Information is available at [email protected]

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