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Written by Jane McNeice, Director, Mind Matters Training
I want to share my late brother’s story of his experience of poor mental health and learning disabilities throughout his life. What would appear to be the biggest challenges in Robert’s life, his learning disability, mental health problems, and in 2014 a terminal diagnosis of bowel cancer, weren’t necessarily the case. The reality was that the challenges came from society’s expectations, and attempting to educate other people about his needs and how they could support him. This was his reason for writing his life story, in his own words. Robert’s dying wish was that his story continued to be shared. I am fulfilling his wish.
As an adult, Robert’s episodes of severe anxiety and depression, and on occasion symptoms of psychosis, led him to seek support from mental health clinicians and providers. His experience was mixed, with some able to support his mental health and accommodate his learning disability, but others less willing 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 specialised in working with people with learning disabilities. He was very supportive and he always had time to listen. He also gave me a CPN who was very helpful to talk to. I also had behavioural therapy with a learning disability nurse therapist.”
The learning disability nurse therapist supported Robert in moving into Independent Living arrangements. In 2007 Robert met his wife, whom he eventually married in 2012, and planned to start a family with. Unfortunately, Robert’s experience of poor mental health continued.
“I ended up having to go to hospital and be seen by the crisis team who admitted me to hospital 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 told me I should be back to work within two weeks and I was discharged. When I got home I was terrible – I couldn’t eat, sleep and just thought about suicide all the time.”
Robert’s last lapse was in 2010, but this time he 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 a day 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 poor mental health, Robert’s health improved, and he spent a lot of time sharing his lived experience and educating others. But Robert dreamed of one career from a young age, and in 2013 took his PSV bus driving test.
“I told the training staff at the driving school that I had learning difficulties and they were very supportive, as were 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! He was so proud, 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 ongoing learning disabilities. Robert thoroughly enjoyed his work, and always knew that work was good for his wellbeing, particularly his mental health. He challenged those who said he wouldn’t be able to work by going ahead and doing it anyway!
Robert had an excellent relationship with his customers. 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 faced his third and final challenge. In May 2014 he was admitted to Doncaster Royal Infirmary and diagnosed with terminal bowel cancer. Sadly, he didn’t get the chance to complete his story due to his deteriorating health, and he passed away on 15thAugust that year.
Robert was on a path to happiness. He had overcome so many challenges, was working his dream job, and was happily married – he was no longer surviving, but in fact thriving! 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. Robert passed with his loved ones with him.
Robert faced 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. I will continue to share his words with those who can make a positive difference for people with poor mental health and learning disabilities.
If you would like to receive a copy of Robert’s full story, written in his own words, please contact Mind Matters or MHFA England.