Past Caring?

One of the headlines today was, “are we past caring?” Automatic instinct replied, don’t be ridiculous. Of course not. Until I read the article.

Justice Malala’s column Monday Morning Matters today talks about how we in South Africa have become so used to violence, corruption, gross sexism and crime that we “are not shocked anymore. We have become inured to what is wrong, what is unacceptable.”

I share his view. It is difficult to read the news with the same enthusiasm when the stories are all so devastating and hopeless. I don’t want to think about the horrors of another rape, another corrupt official, another hijacking.

But it is not all bad. Some of us do still care. Some of us still get angry about injustice and the bad things that happen. Some of us can’t bear to see a child in pain and make it our life’s work to change that. Our organisation, Umduduzi – Hospice Care for Children’s job is caring. South Africa is blessed with thousands of NGO’s doing amazing work to build this country; they care.

One such person is a dear friend, Justin Foxton. He has just won the LeadSA Hero of the Year for KZN. If you are looking for inspiration and a feel good story for a change, all you need to do is have a look at their website. www.peaceagency.org.za . The Peace Agency runs projects which promote social justice and cohesion in South Africa. A true South African hero!

As Albert Eistein said, “The world will not be destroyed but those that do evil, but by those who watch them without doing anything”. Isn’t it time we tried to focus on what we can do?

And not just for 67 minutes once a year…..

 

 

 

 

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Mind your language!

Today I climbed a mountain with my two boys. Ok, it was really a big hill but felt like Everest to me. The air is very thin here in the Drakensberg!

But anyway, chatting as we walked, my 9 year old asked if I would prefer to have 4 arms or two. Without hesitation I answered 2. Madness considering how many times in my multitasking life I have wished to have more hands. ‘Why?’ he asked.

The truth is I wouldn’t really want to be that different from everyone else. I like to be ‘normal’. I like to fit in. And immediately I was ashamed. What is wrong with being different? How does one even define normal!?

As a doctor working in paediatric palliative care, I have had the privilege of meeting many children with a full range of conditions, many that are physically challenged. I am constantly amazed at their resilience, sense of self and sense of humour.

Although other children (and adults) can be cruel when faced with someone that is different from them, most of these children ultimately command respect from their peers by being able to see beyond their own challenges and reach their full potential. We need to see people as people first and not allow ourselves to define others by what we see.

One can get tired of political correctness but words are important. The power in the subtlety of language cannot be underestimated. As a South African, we all know the difference between being black and non-white. Similarly, words like retarded and handicapped can be insulting and disempowering.

Recently on facebook, I saw an advert that speaks about when did, ‘doing something like a girl become an insult’. If you haven’t seen it, do have a watch. http://www.today.com/money/who-says-girl-insult-not-empowering-new-tampon-ad-1D79870115. It is so true. So much of our vocabulary has become an insult of some kid. Many children with cerebral palsy battle with severe muscle spasticity. It is a very real and difficult condition to manage. How often have you heard kids calling each other spaz or spastic when they can’t perform a task with agility?

When I lived in the UK, I naively marveled at how many more people in wheelchairs there are than in South Africa. It took me a while to realise that it was more about accessibility and nothing to do with numbers at all!

I do believe we have come a long way in South Africa in terms of awareness; political correctness and some attitude shift, but also know we are not ‘there’ yet. Next time you are at a braai with friends, take a moment to listen to the conversation as if you were physically challenged, a different race, culture or religion. I wonder how long it will take before you cringe.

 Just a thought….

Burnt out because of burns?

I am haunted by an article in yesterday’s Sunday Tribune about the burns unit at Prince Mshyeni Memorial Hospital (PMMH) in Umlazi, KZN, South Africa.

There was so many terrifying things In the article, it’s hard to know where to start.

Firstly, why are so many children sustaining burns? Clearly this is an issue that needs to be tackled in a big way. Early Childhood Development sites and informal creches need to be involved. Education about simple accident prevention would go a long way to reducing the numbers, given that most burns are from hot water scalds.

Secondly, what is being done to prevent these hard working doctors and nurses from burning out? Burnout and compassion fatigue are real problems affecting our health care system across the country. Can you imagine how difficult it must be to see children with completely preventable but excruciatingly painful injuries day after day? Having spent time in various burns wards, I have witnessed the sheer exhaustion and anger with some nurses being less than kind to the ‘neglectful and negligent mums’.

Thirdly, the article suggests that most burns are due to parental or caregiver negligence. How do we then distinguish the purposeful child abuse scenarios from the poor frazzled overworked and underpaid mum who just turned her back for a minute. There is no way our hospital social workers are able to investigate every case; I am sure many children are discharged back to abusive homes.

But the most disturbing part of the article, the bit that kept me awake last night, was the way the journalist described herself as hardly being able to hear the interviewee over the screams and cries of the children in pain. “When asked how the nurses coped with loud cries, she said ‘we give them painkillers, there is nothing we can do. We are used to it now'”

This feels like such a hopeless situation, but really shouldn’t be. There is always something we can do. We have amazing pain killers such as morphine readily available, even at PMMH. There are numerous well described non-pharmacological techniques that can reduce pain. What is really lacking is education. Health professionals are just not educated in pain management. It is a glaring gap that we as Umduduzi are trying hard to fill.

Umduduzi will be in touch with PMMH in the next few days. Hopefully, we can offer to address some of the stress and burnout felt by the staff and find them willing to learn and have their ideas about what is possible, challenged.

Palliative care is not just for the dying but involves pain and symptom control, good counselling and support and focuses on quality of life. There is no good reason that a child should ever have to experience this kind of pain.

Sorry seems to be the hardest word..

June has been a very tough month for the Umduduzi team and families we support. We have said good bye to too many beautiful children.

As you can imagine, one of the hardest parts of our job is knowing what to say to the grieving parents.

Last week one of the fathers, whose 2 year old daughter had just died, told us “We tried our level best but we can’t fight with God. God loved her more than me. That’s why God took her from me.”

Just heart-breaking. What can one say?

Through years of working in this field we have learned that it is not what we say but rather a silent and comforting presence that counts. My own step father was killed suddenly in a car accident 19 years ago when I was a university student. It was an awful time, but I learned then how difficult people find discussing death. Many fellow students tried to avoid me, so they wouldn’t have to speak to me, some said crazy things like, “I know just how you feel, my dog had to be put down last year’. Many tried to make sense of my loss by saying, ‘At least he didn’t suffer’. It was true, he didn’t suffer but we were not yet ready to look on the ‘bright side’.

A friend had a miscarriage recently and was stunned by the number of people who tried to reassure her by saying, ‘Don’t worry, you can have another one’ as if you were picking out apples at a supermarket. She didn’t want another one. She wanted that one, her baby.

My father died recently and again, it was so obvious that many people are really uncomfortable with your loss. I spent a lot of time trying to make them feel better. I’d catch myself saying sensible things like, ‘it was such a blessing that he went quickly’ desperately trying to ease their discomfort.

It is not easy, none us knows what to say. Nothing we say will take away the pain or bring their loved one back. But from personal experience, the most helpful thing is just to say sorry. I’m sorry for your loss. I’m sorry that this is so hard.

Or just, I’m sorry.