It is Human Rights Day in South Africa – one of my favourite awareness days of the year. Yes, yes, largely because it is a public holiday but also because it gives us a chance to reflect on the past and look to our future.
After a discussion with a mom and dad the other day, I started to think about Umduduzi’s mission statement which goes like this…
We bring compassion, dignity, relevant care and relief from discomfort and pain to children diagnosed with a life threatening or life limiting illness within KZN. We do this through direct patient care, mentorship, empowerment of caregivers, training and advocacy.
So what do we mean by ‘empowering the caregiver’. When we wrote this statement the idea was to support parents (or caregiver) to cope with their child’s condition and to empower them to manage the child’s symptoms and disease. It is about giving them choices and control at a time in their lives when everything feels out of control. They are living a hell they wouldn’t have chosen for themselves.
This conversation prompted a deeper thought. An enormous part of managing your child’s illness is negotiating the healthcare system; appointments, blood tests, treatment options, costs, transport, and what you are entitled to.
From feedback over the years, perhaps the worst and hardest part is dealing with multiple specialist doctors and their ego’s – being sent from pillar to post between doctors who don’t communicate with each other and the intimidation of the hierarchical structure and consultants who don’t like to be questioned.
The state and private sectors in this regard are equally as bad. And although there are exceptional exceptions and doctors who are kind, caring and approachable, encouraging parent involvement and engagement, most seem to be trapped in the importance of their own business and forget that each child and family are individuals. There is an inherent arrogance in the health care system that can cause secondary injury to an individual who is suffering already. You can almost hear the sound of ‘we are trying to help you so you better do what we say regardless of how that affects you or your life!’
So perhaps this Human Rights Day we need to start thinking about how we facilitate patient and parents’ rights. How do we empower the parent to tackle the system and the providers in a constructive and positive way?
I would love to hear from parents and family members – what do you wish you had known when you started your journey? If something could have helped you, what would that be? Perhaps there is a booklet here – Forget your child’s illness – how to manage (or survive) your doctor and the health care system!
Happy human rights day!