He Died Waiting: Book Review
Book review, by Stephanie Hassanali (nurse and clinical nurse trainer), of He Died Waiting: Learning the lessons – a bereaved mother’s view of mental health services by Caroline Aldridge.
I read He Died Waiting because I want to impact positively on outcomes for everyone, “patients”, professionals and families. I have worked hard to put into practice care that is personalised. This word is often banded about while being poorly implemented, but the past 5 years of my career has been involved in studying and pushing for change in this area, something I remain so passionate about. This year I became an accreditor for the Royal College of General Practitioners individualised care programme, hoping that I could influence the education that GPs received and thus impacting on the general public (this would include mental health).
I am so very fortunate that, so far that in my life, I have never experienced grief on the level that Caroline sadly has, but while I read the book I felt I was there with her. She so vividly described her emotions and experience. I felt as if I was truly in Caroline’s head, transported from my bed where I read at night, into her life. It had such a profound impact that one night after reading, I fell asleep and dreamt of my own son suddenly passing away. I woke with a start, and went into his room to check on him. I was very connected to the self-blame that Caroline describes at various stages in the book. This appeared to me a natural element of both grieving and motherhood. My inner critic is most difficult to deal with when it comes to my children, because the guilt can be overwhelming. I wanted to shout “stop blaming yourself Caroline” but then I know that deep down she probably knows this. She describes herself a raw critic, and it was so obviously there in the words of the book. I related to this.
At the beginning of the book, the quilt (pictured on the cover) and its explanation struck a cord with me, such a deep sadness was found from reading the line “made from the remnants of Tim’s clothes”. I couldn’t help to envisage Caroline sitting there with the pile of clothes, the first time they were given to her. The sharp pain and feelings of loss were the emotions that I felt would be hers. The sadness of this introduction was overwhelming, but then I remembered the purpose of the book, and regained myself by reminding myself of why I had wanted to read it. Then the final sentence of the page gave me what I had been looking for- it empowered me to believe that I can make some difference.
Mental health stigma was the same for my generation as it was when Caroline was growing up, little had changed. Following Caroline’s recommendation, I watched Mental: A history of a madhouse (2010, BBC) after reading the book. The history illustrated quite clearly why I grew up believing that those who suffered with mental health were dangerous. It leaks into the society around us.
In He Died Waiting, I so appreciated to have the view of “the mother”, one that is not often heard. I found that I related to both Caroline’s professional side as well as the side of the mother. I am both too. I appreciated Caroline’s understanding of theoretical models and evidence base, but also agree with the limitations. I agree with Caroline’s analysis that little has changed since the reforms in mental health since 1975 in terms of caring for those with a mental health disorder. Another interesting concept, that arose when I read the book, was the idea that once someone is labelled with a mental health diagnosis, everything else becomes attributed to it. It is no hidden fact that those with mental health and learning disabilities die younger from treatable physical health issues, because of those barriers to care. We fail in this area because we become so fixated on the label.
I agree with Caroline that empathy can be taught. I have always had some sort of empathy, but I saw this increase dramatically after experiencing life as a nurse, and then again when I became a mother. My empathy grew. Perhaps empathy is most powerful when we learn from experience, but if we can teach leadership, resilience and communication skills, why can’t we teach empathy?
Caroline questions whether people have become desensitized to the distress of others. Perhaps they have but page 123 had me in tears. I cried like a child. From my own experience I find that people are sensitive to the distress of the “right people”, the ones that do not carry a stigma that has been fuelled by media and fake news. Ignorance desensitizes people. We relate to certain people in society, when they are “blameless”. We seem to blame many people for their situation, they are to blame for being single mothers, for being homeless or whatever else. The blame culture is so evident in the NHS, again another area of passion of mine. There are far too many stories of staff being bullied out when they raise concerns of safety.
The irony was not lost on me when Tim’s Serious Case Review found no recommendations, then the Trust ended up in special measures, again and again. You literally cannot make this up! I related to Caroline’s thoughts far too much, especially around “the system”. I would read something in the book and be replying in my head, turn a page and Caroline would have answered in the same way I would have just done, just far more eloquently. Isn’t that awful that instead of being able to say, “Glad that never happens where I work” I was nodding and agreeing to the behaviours that follow a mistake/error/poor practice. It’s almost a snowball effect, where every action after the mistake is to make it worse than it was! On page 222, I was screaming (in my head) “GO GIRL!!! YESSSS CAROLINE!!” My heart was literally swelling with pride when she tackled the “men in suits”. Not stroppy and rude, a strong woman with great assertiveness. Sometimes we need this in our toolkit.
Change is slow. Only when I started my Nurse training in 2010 that I began to gain a new perspective, but shamefully even after I finished my training, I still viewed mental health as something scary, I knew too little about treatments, but far less about the lived experience. I needed to break that fear. This year, I embarked on a project where I went about interviewing those with various mental health conditions, such as schizophrenia, Bipolar, Anxiety, PTSD, Depression, to learn about their lived perspective. It was one of the greatest things I did. Each story was unique. When I enquired about mental health input, I was met with many of the barriers Caroline describes in her book. Usually people had intermittent and fragmented support from a crisis team when they reached their worst, and even then, the family were relied on heavily for ongoing support. I will forever remember a young man, who had schizophrenia. His dad, a busy office worker, seemed frustrated and at the end of his tether, his son had been moved from assisted living to independent living, support was being withdrawn, yet he had made no signs of improvement. This was a real wake up call for me in considering the larger impact, the ripple in the pond.
My favourite line in the whole book is on page 65, “there is no them and us, we all have mental health”. This empowered me further, and reminded me that, similar to Caroline’s journey of awareness, I hold true value in the lived experiences of others as a form of education. Caroline recommends various resources. For example, the video, “This is only now” which was produced by a mental health youth participation group. This is a powerful representation that I will be sharing with my learners.
I made my pledge on Twitter last night and intend to see it through. For Tim. For every whispered life. I am already introducing mental health awareness into core subjects within the organisation I work for. People need to understand. Nurses need to understand! Along with working on “difficult conversations”, such as bereavement conversations and talking about suicide.
I sincerely believe Caroline has obtained her goal from He Died Waiting. She has certainly touched my emotions, and given a perspective that is raw and personal. This is much more powerful than any model, statistic, white paper or guidelines that I try to learn from. Real lived experience means so much more, and relatable. How can I relate to Caroline? I have not experienced what she has. But her descriptions put me right there, empathy lets me relate to her. Caroline’s book moved me, enlightened me and challenged me, all of what you had hoped.
Thank you Caroline, for sharing you experiences with the world, it was much needed. I am truly inspired by this book.
Stephanie Twitter handle is @StephanieHass18
Her pledge is to empower nurses and care staff to bring awareness to mental health, wellbeing, and distress in every area of practice.