By Dawn ‘Quinonostante’ Willis

Many readers will have watched the predictably, yet excruciating entitled documentary ‘Losing It’, that hit the Channel Four screens this week.  The first episode followed the harrowing real-life experiences of Laura and Briena as they accessed care at Nottinghamshire NHS Trust.  
 
Briena, at the time the film was made, was 11 years old.  I don’t want to comment on her care or diagnosis, because that wasn’t what struck me most about the film.  What unsettled me and still does, days later, is how the filmmakers obtained permission to film a child undergoing a serious and painful crisis in her mental health.  It made me uncomfortable, and I couldn’t work out how the consent to film was obtained and where ‘ethically’ it fits in a situation where someone is a minor.
 
It reminded of an experience with one of my children who had waited two years for his first appointment with an orthodontist.  We were so excited when the day arrived, he’d experienced bullying because of his prominent teeth, he hated it, we hated it too.  The orthodontist explained to my thirteen-year-old child what they would do, what teeth they’d remove, and how long he would need to wear braces following surgery. We were all smiles, thinking “This is it, it’s the beginning of the end his misery.”  My son wasn’t so enthusiastic, he was quite the opposite, he looked horrified. The orthodontist said to him that he wanted to sure this was something he really wanted, and not a process he was about to enter into because he felt pressured by others, or the bullying. He said it wasn’t a quick fix, would take time and there would be a lot of pain involved.  My son refused the treatment.  We were astonished.  I said to the Doctor that he had to have it done, I said that as his Mother I demanded it as he was unhappy because of the bullying, and once the work started, he’d be fine.  The Doctor shut me down instantly.  He said it wasn’t my mouth, my pain and therefore not my decision.  As difficult as that was to hear, and as angry as I was at the time, I knew the Doctor was right.  He was being ethical. It’s impossible to argue against clear ethical rules and boundaries.
 
This is clearly written law, it’s called The Gillick Competence, and it is used to decide whether a child under sixteen years of age is able to consent to their medical treatment with or without the need for parental permission or knowledge.  If I look at the how this was applied to my son’s situation, I can clearly see how I was overruled, and why. 
 
Going back to Briena, the child filmed for our viewing ‘pleasure’. If we’re to accept that she was undergoing treatment that she was, due to the severity of her crisis, unable to consent to, the Mental Capacity Act clearly applies, and the medical professionals and parents would have made a ‘best interests’ decision based upon their examination and observation of the child.  The Gillick Competence should also have been applied and it would be correct to say she lacked the understanding at that point, to be able to give consent (or withdraw it).  For the purposes of this piece I’m going to assume that regarding treatments the ethical processes were followed by the medical professionals involved in her care. 
 
Where it all becomes dark, murky and grey for me is the filming of the crisis. The decision to record, and then to subsequently broadcast a child in clear emotional distress.  Who determined that was acceptable and helpful? Who chose to say, perhaps on Briena’s behalf, that millions of people had the right to observe her pain, comment upon it on various social media platforms, and then leave it in the public domain, potentially forever?
 
I want to make it absolutely clear that I am very keen on busting myths and stigma around mental ill health. I welcome more exposure to the horrendous difficulties adults and children face when attempting to access mental health services and care. I applaud those who are able to share their stories and raise awareness because in many cases it really makes a difference. I fully acknowledge the lack of resources available to medical professionals due to a sustained period of underfunding and cuts. Many of you will have experiences of both sides of this preventable predicament.  My concern is solely around Briena, and how she was projected to the nation. Did Briena give permission? If she did how was it decided that she was able to understand the indeterminable effects of her decision. Was it ethical?
 
The media response, and the social media outpouring during the documentary broadcast was positive in the majority. People were naturally very moved by both featured stories. People were upset and shocked that Briena was suffering.  The cynical part me says that the audience for such a programme may likely already have some interest or experience of the subject matter, therefore the response would be as we saw.  Concerns around consent and the exposure of Briena’s crisis were expressed, and in a vast amount of cases, by members of the mental health user/survivor community.
 
I wish we were basking in a utopian paradise, accepting and empathic of all humanity because then I wouldn’t have any urge to express misgivings. Alas we live in times where despite increasing mental health awareness, disability hate crime is at record high. We hear about horrendous practices within care facilities for those with dementia, learning disabilities and mental ill health.  Children and adults face bullying still purely based on their mental health and still adults are, in the majority, unwilling to discuss their mental health with employers and friends because they fear, or have encountered stigma and abuse.  I feel it’s very naïve to believe that a documentary called “Losing It” will suddenly change entrenched views. It may spark discussion and may mean there are calls for more help to be made available, but in the short-term I only see a young child who may at some point go to school, to college, to university and into work.  What is the lasting legacy of this documentary for Briena? How, at 11 years old, could she be expected to understand how a decision made whilst she was so young may still affect her life at 15, 20, 40? Will she love and embrace the experience, or will she wish it could be wiped from all memory, hers, ours and way beyond?  We can’t know, yet ultimately more importantly, nor can Briena.