I've talked about problems that people have in getting the treatment they need from medical aids. Now I want to look at the Compensation Commissioner and problems that people all over the country are experiencing in accessing simple, basic care for their spinal cord injury, brain injury or other major injury that leaves people impaired with lifelong disability. I want to tell you about Vivienne Van Straaten, whose story perhaps encapsulates the problem. Vivienne was shot in the neck while on duty in the mid-90s and was left with C5 quadriplegia. Wonderfully, with funding from the Compensation Fund, she was able to receive excellent acute care and rehabilitation.
Following discharge from hospital she moved to East London, where over the years she became an inspiring activist and worker in the Rehabilitation Scene in the Eastern Cape. She was involved in assisting other people with "disabilities", organising rehabilitation services and reaching out to the underserved. She was a strong, healthy and active Quad, who was contributing actively to her community. In January 2007 she began to experience painful loss of sensation in her hands and arms, progressively found that her arms were becoming weaker and eventually began to experience problems with breathing. Very early on she recognized that she may be developing syringomyelia (which I talked about in my column several issues ago) and came to us for help.
Over a period of almost 3 months, while she gradually became weaker, progressively lost sensation and slid towards respiratory failure, the officials at the Compensation Commissioner brushed off requests to "re-open" her case, authorise payment for an MRI scan and then consider covering the essential treatment for this life-threatening condition. Eventually in March 2007 she contacted her previous employer who paid for the MRI scan that proved that she did have a massive, life-threatening syrinx. The Compensation Fund finally conceded that they were responsible for covering the costs of treating this condition, but by the time Vivienne was admitted to hospital she was in a very serious condition. She underwent surgery to relieve the syrinx, but then struggled for almost 2 months to get off a ventilator after the surgery.
When she did finally regain some ability to breathe for herself, she was weaker than she had ever been and was still struggling to breathe. Shortly after discharge from hospital, she contracted a cold and was simply not strong enough to cope. After another prolonged admission to hospital she lost her life. Sadly, Vivian's story is not isolated. Every day we encounter people who've had essential treatment, medication, wheelchairs and assistive devices delayed or denied. Sometimes letters, e-mails, faxes and telephone calls simply go unanswered.
Sometimes they are answered, but by officials who, in polite legalese, place barrier after barrier between our patients and proper long-term treatment. Often, as was the case for Viv, the officials are acting “within the law” and are simply enforcing strictly defined policy and procedure – and as such, claim to be acting reasonably. But when enforcing the law leads to the unnecessary death of anyone, it’s time to change the law! Now many of us, patients and healthcare workers, have telephoned, faxed, e-mailed and even visited the Compensation Fund in an effort to establish communication channels and point out the problems faced by people with long-term, severe disability. I have to say that in my experience, and after everyone I have talked with, it’s clear to me that the situation is deteriorating.
On the face of it, we South Africans have some magnificent legislation in place to protect the person who is injured on duty. The Compensation for Occupational Injuries and Diseases Act (COIDA) offers the injured worker financial coverage for all necessary medical expenses, loss of income and even transport to and from hospitals, clinics and doctors. For many workers who have even major, but self-limiting injuries that do recover, this is without doubt an excellent piece of legislation that does meet a very significant need. Unfortunately, as many of our patients, their families and our colleagues in physical rehabilitation in South Africa have discovered, for the person with "permanent disability" (as a result, for example of spinal cord injury, brain injury or amputation), when the wheelchair tyre hits the road, things are not quite as rosy.
A long legacy of poor communication from within the office of the Compensation Commissioner; the almost universal experience of extremely late, or even non-payment, of legitimate, properly processed accounts from hospitals, doctors, rehabilitation therapists and pharmacists alike, and apparent callous indifference and ineptitude from within the Compensation Fund has resulted in many, many hospitals doctors, therapists and pharmacies no longer being prepared to face the huge financial risks involved in caring for and providing services and products to patients who are covered by COIDA.
Now, I don't want to sound like a rabble-rouser and malcontent. I have met and interacted with people within the Department of Labour and even within the Compensation Fund who seem genuinely committed, are extremely helpful and who are a pleasure to deal with. Sadly these people are rare islands of excellence and helpfulness within an organisation that presents an uncaring face to the world. The problem is that the COIDA system is letting people down. People have died needlessly; others struggle to access essential medicines, wheelchairs and treatment, while others have simply given up the fight for the compensation they are entitled to. In 2002, Zachie Achmat, in campaigning for basic treatment for HIV/Aids was quoted as follows:
“Politeness disguises the moral and legal culpability of our politicians and officials. We believe that the personal crises faced by many of our families, nurses, doctors, colleagues and their children should be turned into discomfort and a crisis for the politicians and bureaucrats who continue to deny our people medicine. ”The time has come for us to make things uncomfortable for the bureaucrats who knowingly or unknowingly are undermining the quality of life of our people – so let’s do something about it.
I am inviting anyone who has struggled to access medical care, medicines, therapy, wheelchairs, etc., because of problems with the Compensation Fund – whether you are a “patient” or a health care worker – to write to us and tell your story. Keep it brief, but be specific. We want to combine all these stories and take them to the Compensation Fund and to the Department of Labour, and see if we can help them sort their house out. If not, at very least turn our crisis into their crisis. E-mail your stories to firstname.lastname@example.org and we’ll let you know what happens. Do it now! – Let’s not lose another Vivienne!