By Robert Horton and Jane McNeice
Statistics included within Youth Mental Health First Aid tell us the extent that we know of, of poor mental health in children and young people. Nowhere does this become more salient, than when I read my late brothers self-written story of his experience of poor mental health and learning disabilities during his childhood, particularly following his transfer to a special needs school which could further accommodate his needs:
“The school was very supportive which was good, as at the age of 10, I started to suffer from irritable bowel syndrome (IBS) and always felt depressed and alone.”
What would appear the biggest challenges in Robert’s life — his learning disability, mental health problems, and in 2014 a terminal diagnosis of bowel cancer — wasn’t necessarily the case. The reality was that the challenges became dealing with society and attempting to educate other people about his needs and how they could support him. This was his “raison d’etre” for writing his life story, in his own words, and sharing this with students and lecturers in the South Yorkshire-based universities. These students would form the next group of line managers, employers, clinicians, and other key influencers that could facilitate or inhibit shared understanding and support. Robert’s dying wish was that his story continued to be shared. I am fulfilling his wish…
Robert understood what kept him well; he knew that work was a protective factor for his mental health, if appropriate support was provided. Several employers had failed to understand how they could support Robert, while still meeting their own business needs.
“I used to breakdown in front of my workmates because I did not understand and when I asked for help they used to get aggressive. I began to feel that life was not worth living.”
Robert’s episodes of severe anxiety and depression, and on occasion symptoms of psychosis, led him to experience a mixture of support from mental health clinicians and providers. His experience was varied, some able to support his mental health and accommodate his learning disability, others less able to meet this need:
“My psychiatrist said she would increase my medication and suggested that working full-time was too much for me. I was then transferred to another psychiatrist who specialized in working with people with learning disabilities. He was very supportive and he always had time to listen. He also gave provided a community psychiatric nurse (CPN) who was very helpful to talk to. I also received behavioural therapy with a learning disability nurse therapist.”
The learning disability nurse therapist continued her help by supporting Robert to move into Independent Living arrangements, which was a huge help in building his independence and self-efficacy. In 2007 Robert met his wife, who he married in 2012, and with whom he planned to start a family. Unfortunately, Robert’s experience with poor mental health continued, as did the roller coaster of indecision regarding what would help:
“I ended up having to go to the hospital and be seen by the crisis team who admitted me because I was suicidal. I was then discharged when I calmed down but soon found all the symptoms I had before came back and I felt suicidal again. I was admitted to a specialist learning disability ward by my psychiatrist and stayed there for two weeks whilst I detoxed from the medication. However another doctor disagreed with him and said that I didn’t have a learning disability and shouldn’t be on that ward. He also told me I should be back to work within two weeks and I was discharged. When I got home I felt terrible. I couldn’t eat, sleep and just thought about suicide all the time.”
Robert’s last lapse was in 2010, but Robert received a much more positive experience with excellent support:
“The nurses on the ward were brilliant. They had plenty of time to talk to me. I got an hour of support for myself daily and I took part in groups doing gardening, cooking and other activities. They also had an advocate who would speak to the doctors and nurses for you.”
Since his last episode of mental illness, Robert’s health improved, and he spent a lot of time sharing his lived experience and educating others. But Robert dreamed of one specific career from a very young age, and finally in 2013 he took his PSV bus driving test for the second time. Positive recognition goes to the driving school, which supported Robert with kindness and understanding of his needs:
“I told the training staff at the driving school that I had learning difficulties and they were very supportive, as was all the staff from the administrators to drivers. They took extra time to explain things and gave lots of encouragement. I think this is so important for people with learning difficulties; if they can get the support they need and not be chucked in at the deep end they can achieve a lot.”
Robert passed his test! He was the proudest man on earth, and soon after secured part-time hours with a Doncaster-based bus company.
“This was the most challenging thing I’ve ever had to do but it was also rewarding. I had to undertake five exams and passed them all. I also had to attend driving school. I passed my test after one week of 16 hours driving at the school. I had to wait to find out if I had passed for a while and I was very nervous but my heart told me I’d done it. It felt very good.”
He’d overcome his challenges – his poor mental health from a young age, and on-going learning disabilities. Robert thoroughly enjoyed his work, and always knew that work was good for his health in many ways, in particular his mental health. He believed in vocational rehabilitation, and the benefits of work. He challenged those who said he wouldn’t be able to work by going ahead and doing it anyway. One might advocate “actions speak louder than words” in this case.
Robert had an excellent relationship with his customers, and developed solutions for the difficulties he had with managing fares. He took pride in the feedback he received from customers:
“I believe it is really important to be friendly and to go the extra mile to look after my passengers. I particularly look out for older passengers and passengers with disabilities. I get lots of positive feedback and many have told me they would vote for me as driver of the year.”
Unfortunately, Robert’s third and final challenge rendered this impossible. Following several visits to his GP with symptoms of defecating and bleeding, and a misdiagnosis of IBS, Robert was admitted via the Accident & Emergency Department to Doncaster Royal Infirmary and diagnosed in May 2014 with terminal bowel cancer. The cancer was in its fourth stage and had spread to his liver, lung, and was in his lymph nodes.
Robert didn’t get the chance to complete his story due to his quickly deteriorating health and his passing on 15th August 2014. I have completed his story and will aim to share his words with those who want to make a positive difference for people with poor mental health and learning disabilities.
Robert was on a path to happiness, he had overcome so many challenges, was doing his life’s dream job, and was happily married. Robert opted not to have chemotherapy, which may have slowed down the growth of the cancer. Robert had eremophobia, for those who haven’t heard of this, it’s a fear of vomiting. This phobia played a huge part in Robert’s anxiety during his illness, and dictated his decisions whether or not to have treatments where there was a risk of vomiting as a side effect.
Robert had amazing support from the local hospice. They helped to support both his mental and physical health, incorporating his faith, and his choices around his death. This included writing a ‘sparkle’ where Robert could state exactly what his end of life care choices were. Robert had a faith in spirituality, which helped him face his greatest challenge yet. Robert’s anxiety always remained — the face with no name — that would sit in the room with us in his last few weeks. He was frightened. We were frightened. Robert passed with his loved ones with him.
Robert faced all three challenges and a million smaller ones in between. He overcame them all in many ways, he was brave, and I am proud to be called his sister and share his story. If you would like to receive a copy of Robert’s full story, written in his own words, please contact Mind Matters www.mindmatterstraining.co.uk