‘Health System Failed My Ill Late Husband’
By Angela Bekiaris:After at least 94 mentally ill patients died, the government has formed a task team to start relocating those in need. The move took place following the investigation into the deaths of vulnerable patients who were transferred to unregulated NGOs from Life Esidimeni, a fully owned subsidiary of the Life Healthcare Group — the biggest and oldest hospital public/private partnership in South Africa. These patients were dumped in hospitals which could not cater to their needs.
When news broke that the task team, led by the Gauteng Director-General in the Office of the Premier, Phindile Baleni, together with the national health department director general Precious Matsoso, was going to investigate — adding that the families will also be apart of the relocation process — Alison Eichhober spoke out about her own traumatic experience.
“Seeing in the news about how all these helpless mentally ill people were thrown out of Life Esidimeni devastates me and reaffirms that there really was nowhere I could have taken him where he would have been cared for,” says Alison about her late husband Owen who had a mental illness which was ignored. Alison shares her tragic story with us.
“On February 25, 2012 my husband Owen, 43, who had been previously diagnosed with Bipolar Disorder 1, had a serious manic episode and became psychotic. He was raising his voice and our two small children (aged five and seven at the time) became distressed, so I locked him out of the house. He was, however, still safely within our property. I was afraid that he would harm himself and it was obvious that he needed medical help, so I called our local police station.
When they arrived my husband started yelling at them. They stopped the vehicle, watched him briefly, laughed at him and drove away. I called again, explaining that he was sick and I needed help. An hour later they came passed the house again but didn’t stop. Eventually after several hours the neighbours had gathered and I think a few of them had called the police because another vehicle had arrived.
They had no clue what to do or how to handle the situation and kept implying that my husband was drunk. Eventually they loaded him into the back of their van and left for the police station. As they left, the paramedic from Akeso (psychiatric clinics group) arrived and followed them to the station where he spoke on my husband’s behalf and convinced them to take him to the closest government psychiatric ward, which was at Natalspruit Hospital in Kathlehong.
He was admitted and immediately heavily sedated. When I arrived the next morning to see him I was told he wasn’t allowed anything of his own and I was asked to bring him food daily as there wasn’t enough there to feed all the patients. I visited daily and found him in torn and threadbare hospital pyjamas and bare feet — some days he was awake, but other days he was too drugged to even open his eyes.
A week later he was released from Natalspruit, still psychotic. I took him back the next day to ask for him to be readmitted, but after waiting for almost two hours to speak to someone, the head psychiatrist refused (and berated him for having bad manners because he interrupted her when she was speaking to me!). She told me all she would do was increase his prescribed medication and sent us to sit in yet another queue to collect more meds.
After sitting in the queue for another hour, one of the psychiatrist’s assistants approached me and said the doctor had changed her mind and wanted to admit him. We left the pharmacy queue without receiving the new medication and were directed to a general ward in the hospital.
It was shocking — there were sick people in wheelchairs, hospital beds and lying on the floor. My husband panicked and ran out of the hospital. He disappeared into Kathlehong and I was left on my own trying to find him. The psychiatrist simply shrugged her shoulders and told me to go home.
Later that day, after I had spent several hours driving around alone searching for him, and had even filed a Missing Person’s report with the police, he found his way home. He had been mugged and his feet were bleeding, having walked most of the 18 kilometres home from the hospital.
I immediately called the psychiatrist who told me she would not take him back. She told me to go back to her in two weeks to adjust his prescription, despite me explaining that he was still psychotic, in desperate need of professional help and that we had not been given the medication she prescribed.
In desperation I called Akeso again. The lady contacted the doctor directly and was told the same thing. The angel from Akeso sent an emergency psychiatric paramedic vehicle and agreed to help me lie about our address so that we could have him admitted into Helen Joseph Hospital. It was a little better there as he was allowed to wear his own clothes and was given proper food, which was a huge step up from Natalspruit.
Every day I asked them to transfer him to a more long-term institution where he would be given actual therapy and help instead of just being drugged into submission. I went daily, never knowing what state I would find him in — some days lucid and calm and others practically unconscious. One day he was up but barely able to walk due to being so heavily medicated — the Thorazine shuffle (an American medical slang often seen in psychiatric patients sedated with thorazine).
Twice I arrived to find his eyebrows had been shaved off and no one could tell me who had had a blade near his face. Another day I arrived to have him begging me to take him home after he had had to clean another patient’s faeces out of the bathtub before he could wash himself. I would also get panicked phone calls where he was screaming in the background.
I kept on begging for him to be transferred to somewhere he could be helped, and then after almost three weeks they told me they were releasing him. I told them that they couldn’t release him as he was in no state to manage and I wasn’t capable of caring for him and two small children. I was told if I did not fetch him he would be released on his own and given bus fare to make his own way home.
We spent the next two months trying our best — my husband followed the doctors’ orders and never missed a single dose of his many medications, despite the awful side effects. I took him to the monthly checkup appointments at the hospital where we had to wait hours to get his file first before going to wait to see the doctor, and then wait again in another queue to collect his meds.
He said repeatedly that he would never have managed those appointments without me there to stand in the queues with him because the whole procedure was so long and tiring.
So when, two days before his death, he told me he felt suicidal I felt we had nowhere to turn. I called the hospital but they dismissed me so I decided I would have to be the one to help him fight.
Sadly I was not qualified to do that or to watch him 24/7 and he died of his mental illness.
I am NOT ashamed of my husband or how he died, but I am ashamed of the society that made him feel like his illness was his own fault, the hospitals, doctors and nurses who treated him like a second-class citizen, denying him the medical treatment he so badly needed and would have benefited from. Years have passed since Owen’s death, but after following the news recently, she is saddened by the situation many others are still facing, having lost their loved ones too due to a lack of health care in this country.
“The health system failed us, over and over again. By treating him with such total disregard, by refusing to give him the help he needed,” she adds. “At one point I had a telephone conversation with one of the doctors pleading for them to give him a chance, giving reasons why he deserved to be helped, trying to prove that his life was worth saving, how vital he was to our family. A few days later he was booted out and that was it. THINGS HAVE TO CHANGE. We have to start respecting mental illness and we have to destroy the stigma and shame around it!”
At the time of going to print, Gauteng Health MEC Qedani Mahlangu resigned from her post and the provincial government has promised to rectify the problem. Owen with the couple’s kids, Emma and James. “They both still love and miss their dad immensely but have never had negative feelings towards him and have always known that it was his illness that he died from — it was not his choice,” explains Alison.