BLOG: Finding kindness on the long journey to mental health
This Mental Health Awareness Week, Board of Deputies Director of Operations, Judy Silkoff, shares her family’s experience of mental illness and how she was pleased to organise JAMI Mental Health Awareness training for the BoD professional team.
For many years, mental illness was something that happened to other people, to other people’s families – not to mine. Until one day, when I realised that that wasn’t actually true any longer.
It started with increasingly frequent telephone calls home from my then 14-year-old daughter Ruth’s form tutor. She was becoming agitated in class, unable to cope with the combination of rowdy classmates and pre-GCSE level study. We agreed strategies, I faithfully followed through, then pushed the subject to the back of my mind. But the feeling in the pit of my stomach was getting harder to ignore, and the phone calls kept coming.
Soon, I was getting reports that Ruth’s panic-fuelled episodes were distressing her peers – and a strong recommendation that she needed to ‘see someone’. I promised my daughter, my anxious, distraught, confused daughter, that it would all be ok. A few sessions with a CBT therapist, I said, and everything would be fine. I had no idea back then how wrong I was.
Today, Ruth is 18 years old. Of the almost-precisely four-year period since I first asked my GP to refer her to the CAMHS (Children and Adolescent Health Mental Health Services) of our local hospital, she has spent nearly 20 months under some form of hospitalisation. It’s hard to remember a time when her mental illness wasn’t a huge part of all of our lives.
Of course, there were many different stops along the long road of Ruth’s painful and difficult mental health journey. From CBT, to psychotherapy, to medication. From her shortest three-day stay in a bed on a hospital children’s ward, to a horrendous four-week stint there when no appropriate opening in an adolescent unit could be found.
At each stop, each intervention, I was hopeful that finally things would start to improve – but they didn’t. Treating an adolescent with emerging mental health issues is, it transpires, a bit like trying to find a needle in a haystack. No-one really knows what will help, so they try different therapies, different combinations of medications, in a valiant attempt to hit on the right treatment. But the teenage brain is a complex thing, and watching my daughter slowly lose sight of herself, and her belief in a viable future, was the most heartrendingly painful experience I have ever undergone.
Ruth spent seven months in an NHS-sponsored bed at a private mental health unit set in leafy grounds in North London. People oohed and ahed when they heard the name of the hospital, made famous by its frequent celebrity residents. But her stay there felt chaotic – and when she was finally discharged it seemed all she had learnt to do was survive inside the walls of the unit. She lasted four weeks in the ‘outside world’ before she was back in A&E, having made yet another attempt to seriously harm herself. Her next stop was in an NHS adolescent unit – it had a horrible reputation among her peers, and she fought so hard not to get there that we eventually had to get her sectioned. When we finally arrived, I understood her reluctance – it was a drab, cold, dilapidated prison-like building. Indeed, during her eight-month long stay there she had to change rooms twice because of leaking sewage and spent four nights bunking on a mattress in the common room with the other patients because of emergency work to prevent the roof collapsing.
But I truly believe that it was this unit that saved Ruth’s life. The building might have been drab and cold, but the staff went way beyond what was expected of them. Ruth turned 18 at the end of her time there – the transition to adult mental health services is a notoriously dangerous period for young people, with a high suicide rate. But the staff fought tooth and nail (including a battle with the NHS Commissioner) to ensure the right follow-on setting for her before they allowed her to leave.
Today Ruth lives in a beautiful self-contained flat in a sheltered housing project about 20 minutes from our home. There is a member of staff onsite 24-7, and this means she’s finally been able to achieve the right balance of independence and support to be able to start living a productive, happy, hopeful life. She attends college, where she is studying for a triple BTEC in Health and Social Care (despite everything, she aced her GCSEs while in hospital) and will soon be taking ownership of a six-week old kitten. Life is not easy for her – possibly it never will be – and I still panic when I can’t get hold of her or haven’t heard from her for a couple of days. But – and this is the crucial bit – right now she knows it is a life worth living.
The theme of this year’s Mental Health Awareness Week is kindness, and when I look back over the past few years, I can see so clearly the difference that kindness made to Ruth’s ability to survive her mental illness. From the nurses who spent hours playing board games with her to distract her from a debilitating episode of anxiety, to the Head of Sixth Form who came to every single professionals meeting at Ruth’s unit, despite the fact that she was only actually in her charge for about three weeks before being hospitalised.
But I also reflect on the fact that the absence of kindness, and indeed the absence of proper understanding of mental illness, certainly set Ruth back and even put her in danger on more than one occasion. There was the teacher who walked into the classroom to find her clearly struggling and asked what was wrong – and when she replied, ‘I want to die’, shrugged his shoulders and walked right back out again. And the nurse who told me Ruth was faking and put the phone down on me, after she had called home raving and rambling and clearly having an allergic reaction to a new medication she was trialling.
Several months ago, as part of my role as Director of Operations at the Board of Deputies, I was so pleased to have the opportunity to arrange a half-day mental health awareness training session for our professional team, through JAMI. Little did I know that the booked date of the session would turn out to be just a few short days after the entire country went into lockdown mode!
Fortunately, this didn’t deter JAMI, and they simply moved the planned programme over to Zoom. The training was a real eye opener for all of us – the focus shifted particularly onto the kinds of stresses and anxieties that people were experiencing as a result of the Coronavirus situation – and crucially, on ways to help ourselves and each other get through it.
The key message that I took away from that session was that of the importance of kindness – the need to be kind not only to each other, but to ourselves.
I feel very proud to work for an organisation that places an understanding of mental wellbeing at the heart of its operations. My personal experience has taught me just how critical this can be, to ensure that people, communities, and indeed organisations continue to grow and thrive.
Four years ago I learnt that mental illness isn’t just something that happens to other people – but the biggest lesson I have learnt is that the responsibility for mental wellbeing is one that belongs to each and every one of us.