Thriving, not surviving

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March 28th 2018 was a joyous day; we officially launched our early childhood development program at our local multi-drug resistant TB unit. There were speeches and thank yous, singing and dancing -brand new clothes for all the children – Overall a heart-warming and happy occasion.

As we were winding down a woman came up to me with tears in her eyes. I paraphrase –  “I cannot thank you enough for what you are doing here. I work with children with this disease all over the world. So many of them are locked away. To see the love and joy here is amazing. Thank you.”

I was stunned. I had never really thought about the fear and the stigma associated with this difficult to treat and yet curable condition.

This woman is Dr Jennifer Furin, director of capacity building at the Sentinel project, (www.sentinel-project.org) a global partnership of researchers, caregivers and advocates who share a vision of a world where no child dies from this curable condition.

On reflection it is true. People are scared. We often have folk wanting to volunteer with the kids until they hear that they have drug resistant TB.  Pharmacist and MDR TB expert Nirupa Misra in her speech said, “You are more at risk of contracting MDR TB in a taxi. The kids in the hospital are all already on treatment and therefore less infectious. “

With all diseases, at Umduduzi we believe it is not about surviving, but rather thriving. All children need to access play and education. They deserve a right to thrive with good quality of life even when faced with serious illness and horrible circumstances that leave them hospitalised for months and months. It is time for a paradigm shift.

I love this definition from the World Health Organisation – Health is a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity.

 

 

Surviving the Health Care System – Patient Rights

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…

Mission:

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!

Being ‘there’ – palliative care

A year ago I wrote a blog trying to explain what we do- what do we actually do in palliative care? But still folk are confused so here we go… I quite like this recent definition coming out of the USA.

Palliative care is specialised medical care for people with serious illnesses. This type of care is focused on providing patients with relief from the symptoms, pain, and stress of a serious illness – whatever the diagnosis. The goal is to improve quality of life for both the patient and the family. Palliative care is provided by a team of doctors, nurses, and other specialists who work with a patient’s other doctors to provide an extra layer of support. Palliative care is appropriate at any age and at any stage in a serious illness, and can be provided together with curative treatment.

So how does this translate into real patients and families?

It has been a tough year so far. We have said good bye to too many children, some whom we had known for years.

Amazingly it’s never quite how or what we expect.

‘Peaceful’ I will call him, was a beautiful child with an exceptionally rare progressive disease. He outlived his prognosis by years – I had almost started to question the diagnosis! Month after month they would attend the palliative care clinic, and he would just lie peacefully in his mother’s arms. He never complained or moaned. Just peaceful. During this time we helped the mom comes to terms with the fact he wouldn’t survive and supported her emotionally to live with the uncertainty of how that would look. We managed his itchy skin and his chesty cough and helped the mom to decide when to seek medical help. We gave her as much information as we could to help her cope. We found him a pram when he got too heavy to carry. Largely we were just ‘there’, a visit or a call away.
He died very suddenly at home a few weeks ago at the age of 5. Since then we have provided the mum with bereavement support and a home visit. That will be ongoing as long as she wishes.

‘Sunshine’ was a gorgeous girl, full of joy and brightness. She touched every life around her. Despite years of unpleasant symptoms and treatments she always arrived with a smile and usually some sweets for the doctors on call. There was nothing like a sunshine hug to make my day. Sadly ‘sunshine’ had a difficult few months at the end, but again, having known her and the family for many years we were ‘there’; from casual chats to more serious discussions about yet more bad news; getting her assessed and supported when she wasn’t coping at school; allowing her to express her feelings and worries; giving the family options about where she should be when she died; visiting at home to make sure she was comfortable and that the family were coping; answering WhatsApp questions when things felt too much or too confusing.

There have been many more of these amazing children living, surviving and thriving for years with their rare diseases.   Sadly dying comes too soon for many. But it is in the way these children and their parents live that they teach us all so much. Palliative care supports that.

So perhaps it is as simple as that. Palliative Care is being ‘there’ whatever that looks like.

 

 

 

 

 

Meaning out of Loss

This week I had an amazing experience. Not only does South Africa have a new president and a new hope, I helped deliver food parcels to 10 different families. Not our core business at Umduduzi – not at all, but it certainly lifted my spirits.

People always ask – how do you do your job? Isn’t it depressing? The truth is that working with sick children is difficult emotionally but it is certainly not depressing. The families we work with are incredible; passionate, emotional, resilient. Each one has their own story and journey that must be followed.

I love my work. Watching the grace with which these families handle the extreme adversity they face is a daily dose of humility. However the thing that will burn me out long before disease, dying and death is the poverty and dire social circumstances our families often face.  Most mom’s cannot work because they are caring 24/7 for their precious children with special needs. Getting to all the hospital appointments alone can be enormously challenging. I can prescribe and deliver the morphine to a dying child’s bedside but when there is no food in the house? I feel so helpless and lost.

So how did I get to be delivering food parcels?

A dear friend Blake, lost his son in December to a chronic illness. In his honour, Blake has started the Junaid Foundation. He is raising money to assist families with sick children in need. Knowing I know numerous sick children dotted around the province we joined forces and went road tripping. I got to check up on my patients and Blake got to bless each family with a wonderfully heavy bag of goods. Thank you to some other wonderful donors we delivered 3 prams to babies with cerebral palsy and every child got a beautiful knitted blanket courtesy of the ‘Granknits’.

It is not Umduduzi’s role to provide food so we are delighted to work with organisations such as the Junaid Foundation and the Lamees Ryan Foundation – beautiful people doing beautiful  work for beautiful families in need. All of the time making meaning out of their terrible losses.

 

 

 

Is it still a man’s world?

Ugh. I feel sick.

It’s woman’s month in South Africa and the press is full of stories about women being assaulted or beaten up by men.

In the last few days: A metro police man playing golf on his day off chose to verbally assault a group of female players (it ended in violent fisticuffs). A high school boy is caught physically beating a girl on camera at a local Durban school. A group of men beat up a heterosexual couple in a KFC drive through. A male politician slaps a woman for calling him gay.  Seriously?

These are all horrifying stories of violence,  but it is so much worse than simple male brutality or gender violence which is a shameful reality of the society we live in; here and abroad.

I don’t want to be patted on the back for ‘making it’ in a man’s world. When are we just going to get excited about talent and hard work?

I have two sons who are both well above average in intellect  (yes, yes proud and biased mom). Do I want them to compete in the world as men? White men? South African  Christian white men? How ridiculous! Surely as an awesome mom I want them to find their place in the world as themselves. If there is a Hindu woman of mixed Australasian decent who is more qualified than my son – give her the job!!! It shouldn’t matter.

I have just read the ‘note from the chairperson’ in the magazine of a local airline; contributes to my nausea…

Woman’s day in South Africa pays tribute to the 20 000 heroic women who in 1956 marched to the Union Buildings to protest the extension of the pass laws to women.

The article goes on to say that as the airline, they had only 4 female technicians in 1994, but now they have 114. They even have 69 female pilots. Of course total numbers are not mentioned. Is 69 a lot? Are we meant to be grateful? Blegh.

The fact that 61 years after the heroic march we are even still talking about women’s progress in a man’s world is just so sad.

Enough! I want to be a mom. A good mom who had no regrets about missing my children’s childhood because I was chasing  my passion and career in children’s palliative care. I want to have it all and not be judged. Surely I can be awesome if I do  both part time? What about those dad’s who want the same? Or is that not manly enough for society? Sadly financial pressures often make this impossible but gender should not matter.

I see that a cafe in Melbourne, Australia has instituted an 18% ‘man tax’ as a way of highlighting the gap in salaries between men and women. The men have to pay 18% more for the same food and service.  How is it possible that in 2017 one’s gender determines one’s salary.? Truly infuriating, but sadly it’s a true story.

Ok. I’m getting dizzy from the rare air up here on my hobby horse. Dismounting! But one final point. Both men and women contribute to the ongoing gender inequalities and attitudes. Time to evaluate?

Have  great weekend and wmen’s month!

 

 

Perspective

Mesmerised.  The depth, the width, the breadth. High above the ocean, flying home after a frustrating 24 hours of airports, bad service and little irritations. But that’s all noise. Up here it’s so quiet. Just the hum of the plane and the most spectacular views of coast, sea and clouds.

The sun is rising over a dark grey ocean.  Flickers of silver, yellow and gold dance on the water below me.

I feel so small. So insignificant.

‘So’, you are thinking. ‘She has finally lost it’.

Well don’t panic. It’s a short flight and soon I will be landing back in Durban where this quiet moment of peace and reflection will be nothing but a distant memory swallowed up in the chaos that is my life.

My taxi driver in East London had never been on a plane. He said, “my place is here on the ground. When something bad happens on the road you can get out the car and run. Where are you going to go when you up there?” We both laughed and I thought how lucky he is to not know what it is to have a flight cancelled with no explanation, no apology; to not spend hours and hours waiting for better days at an airport.

Seriously? I love flying. It is a privilege to see the world from a different perspective. To be stuck in a chair with nothing to do and no where to go trusting in a huge metal bird and a pilot to get you where you need to go.

I read an article yesterday – the key to happiness is acceptance. Very zen. And yes, I had a lot of time hanging round airports… It made me think of a beautiful family that have just lost their precious child to cancer. Their devastation and agony is very apparent and yet I would not call them unhappy. During his illness they accepted their situation and managed it with grace and skill, ensuring his last weeks were filled with a lot of love and even fun.

Talk about perspective.

It doesn’t mean I don’t get to be frustrated by poor airline service and bad communication, but some things just are what they are.

Kind of makes me think of this well known prayer…
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Palliative Care?

I am often asked, “so do all the children you support have cancer or HIV?”

This fascinates me as there are so many other conditions requiring good quality palliative care. I am sure it has something to do with the publicity that cancer and HIV get worldwide.

Next month is both World Cancer Day, celebrated every year on the 4th of February and International Childhood Cancer Day on the 15th. There are awareness months for childhood cancer, skin cancer, eye cancer, cervical cancer, breast cancer, bone marrow stem cell donation and Leukaemia; a week for CANSA care, and even a day for cancer survivors. And lastly let’s not forget National Bandana Day.

Locally, there are over 11 non-profit organisations dedicated specifically to support children with cancer and their families.

And while this is truly wonderful – a lot of good people raising funds and doing amazing work – there are children suffering with other conditions receiving little or no support at all.

So as Umduduzi – Hospice Care for Children, Member of PatchSA (http://patchsa.org/), our aim is to raise awareness for palliative care and for all the children that need it.

“Palliative care for children is the active total care of the child’s body, mind and spirit, and also involves giving support to the family.  It begins when illness is diagnosed, and continues regardless of whether or not a child receives treatment directed at the disease. Health providers must evaluate and alleviate a child’s physical, psychological and social distress.  Effective palliative care requires a broad multidisciplinary approach that includes the family and makes use of available community resources; it can be successfully implemented even if resources are limited.  It can be provided in tertiary care facilities, in community health centres and even in children’s homes.”
World Health Organization 2002

So the children we see range from newborn to 18 years of age. They have a variety of conditions including congenital or inherited disorders, organ failure, prematurity, neurological deficits, infections and of course HIV and Cancer. Every child with a condition that causes symptoms needs some form of palliative care whether it be emotional support or pain management. And regardless of the condition, their parents need support too. We may not be able to prevent all illnesses but through palliative care we can offer a different strength and hope.

Please help us in 2017 to raise awareness, because when individuals understand what palliative care is and its benefits they can start to ask for it and only then will the supply need to meet the demand.

 

Living and Dying in Pain: it doesn’t have to happen

ct7j-e6wgaale9dTomorrow, the 8th October is World Hospice and Palliative Care Day; the theme this year is ‘Living and Dying in Pain: it doesn’t have to happen’. So why does it?

75% of the world’s population (5.5 billion people) have no or inadequate access to controlled medications for moderate to severe pain. The scary thing is that in South Africa although we have excellent availability to morphine in both private and state sectors, patients are still not accessing it. In 2014 our statistics showed that we used the equivalent of 10mg per person compared to the UK who used 270mg per person. Our pain management is pitiful!

There are numerous barriers to adequate pain management; the first being health professional and public attitude to strong medications. Somewhere along the line, Morphine acquired a very bad reputation. We call this opiophobia – and it is exactly that. The Fear of Morphine. The use of morphine is poorly understood and poorly taught and therefore the myths about it abound and continue. The average doctor in this country leaves medical school with less than 4 hours of training in pain management under their belt. And yet pain is a very common problem.

Secondly, it seems we are more concerned with restricting drug use, worrying about addiction spending vast amounts of money policing and jailing addicts, than we are about pain control. In countries where they have decriminalised drug abuse, addicts are managed as patients and the budget redirected to rehabilitation programs – a win:win all round.

So what can you do?

To people and their families in need of pain relief

  1. Know your rights to palliative care and pain management and demand these from your healthcare providers and governments.
  2. Talk to your healthcare provider about the options for pain management for yourself or your family member.

To healthcare workers

  1. Educate yourselves on the facts around controlled medicines for pain management
  2. Lobby your hospital administration and government to ensure access to pain treatment for patients in need
  3. Give your patients and their families accurate information regarding management of their pain.

Pain relief should be seen as a human right. However at present many patients, both adult and children are left to suffer in pain because of a lack of awareness and education. #TimeForChange #JustSaying

Reference:

file:///C:/Users/Acer/Downloads/World_Hospice_and_Palliative_Care_Day_Toolkit_2016.pdf