Burning the Laptop?

I have just realised that this is the first time I have written this year. Oops, it is already April.  I guess I am trying to work out where the time went? Or maybe I am just tired. People are tired. Emotionally drained. Aren’t you just so tired of being tired and busy?

I’m having such a busy year. In fact that my ADD is playing up something terrible. I managed to accidentally book myself to run a workshop in Johannesburg, at the same time that my BFF would be on holiday in Durban, at my house! Today I am on a flight from Durban to Jozi but only just… Why? I managed to book the flight in the wrong direction. And my poor laptop is bearing the scars; I burnt it on a candle while working in a hotel restaurant. I now have a permanent black mark on my screen! There has to be a GIF or a meme for that somewhere.

The reality is that my situation is not that different to everyone else. Everyone is busy. Everyone is tired, perhaps apart from those awesome folk who like kale, jogging and yoga with some mindfulness in between.

The problem I am facing is the reason I am busy. I am busy because I don’t get to just do my job. At Umduduzi, Tracey and I spend most days working with seriously ill children and their parents, attending advocacy meetings, teaching health professionals and medical students and then we go home and come up with fundraising ideas.

I find myself wanting to yell “but I am just a doctor.” Too bad Julia. This is a path you have chosen (and here I hear my mother’s voice) because you believe in the work you do. And I really do, passionately. However, it is not sexy work. It’s not feel good stuff. No one wants to talk about seriously ill children that may suffer and that may not get better. No one really wants to think about it. I don’t even like talking about it. It is a serious conversation killer…Picture the scene:

Stranger: So what do you do?

Me: I’m a doctor.

Stranger: Wow, that’s amazing. What is your specialty?

Me: Ahem, (clears throat) Well, (pause) I provide care and support to seriously ill children, most of whom won’t survive.

Stranger: oh, oh, wow, that’s amazing (strained tone). You must be such a special person.

And so, fundraising, which is always difficult, becomes even more so.

Sadly, one of the communities that has supported us enormously in the last 5 years, has been on the receiving end of tragedy after tragedy. Emotionally draining because everyone cares so much. Everyone wants to help. And yes people are busy; very busy with their own lives.

Where it ends in a beautiful crazy country like ours, who knows, but NGOs like ours need help. While we are delighted with every toy and stationery item we receive, we need money. We need to give our team members a salary raise, we need to hire more staff. Bottom line, we need money to provide our professional service.

We can look to the government and say, “You should be funding this.” They know. And contrary to popular belief there are some beautiful people doing a phenomenal job in the Department of Health. And slowly things are starting to change but there is a long way to go with a massive list of competing priorities.

So the challenge is out there. Here are 5 ways you can support your chosen NGO: (preferably us!)

1)      If you read this and you don’t have a MySchool card. Get one. It costs you nothing and you can swipe it at a number of stores. https://www.myschool.co.za/

2)      If you have a spare R100, a month donate it. Sign up to an organisation that you believe in.

3)      If you don’t have spare cash but like spending time with friends, host a small ‘Crumbs for Comfort’ event. http://www.umduduzi.co.za/crumbs-for-comfort/

4)      If you have spare cash and like spending time with friends, hold an expensive ‘Crumbs for Comfort’ event. http://www.umduduzi.co.za/crumbs-for-comfort/

5)       And at the very least, get vocal – share the posts on social media, like every post you see and tell your friends.

With that, I am going to bed and really hope that I have booked a flight in the correct direction tomorrow!

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.

 

 

 

 

 

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.

 

Little things can add up..

People are always asking us how do you do your job? And fair enough, you must be a little mad to want to work with very sick children. But amazingly, although that part of our work is really difficult there are other aspects that make it so much harder. Let me explain using some real examples…

Jabu sent me an SMS today. 2 weeks ago she lost her 4 year old son to a debilitating kidney problem; he died very comfortably with dignity at home with the help of Umduduzi. She is missing him dreadfully. But the loss goes beyond this heartache to absolute destitution. You see children with chronic illnesses that require 24/7 care are eligible for a government grant of R1400.  But when the child dies the grant goes with them. Jabu had to give up her job to care for her precious son. Now she is stuck, jobless, starving and grieving.

Cindy lost her 13 year old son 2 months ago to advanced cancer in the care if Umduduzi. She has an alcoholic husband and an older son who is always in trouble with the law for drugs. She too had to give up her cleaning job to care for her child and has not been able to find work since he died. Stuck, starving and grieving.

I could go on but won’t not only because some of you have already stopped reading but because just writing about these families I have tears running down my face. The list is endless. We are left feeling so helpless. Of course we buy groceries her and there; providing what we can when we can, but these are not long term solutions. As a palliative care organisation we have to remain focused on palliative care; we could get completely swallowed up into a feeding scheme and lose sight of our goals. As an organisation with rare expertise we cannot let that happen.

I can hear compassion-fatigued and cynical friends saying – the government should be doing something. Yes, of course they should but these are people that no one has ever really thought about. So vulnerable and marginalised.

We do our best to network with other NGO’s providing different packages of care but would be grateful for any ideas, helpful ways to support these grieving parents.

If you are short of ideas but have a little cash to donate, that too is also being part of a solution.  No donation is ever too small.

As Tim McAvoy said, “those little things can add up to a big difference”…

those little things can add up

Who’s to blame?

 

I love my job. Working as a paediatric palliative care practitioner over the last 13 years I have had to have some really difficult conversations with both children and their parents. So in the last few years it makes sense that I have been invited to teach final year medical students communication skills.

Believe it or not, it is really quite fun.

I feel really privileged to have time with these young ‘doctors to be’ at this point in their careers; they have seen enough disease, human drama and tragedy to be fully sensitised to reality, but are not yet jaded by their own fatigue and weight of responsibility.

What they have seen though, is numerous senior colleagues that are burnt out or who have developed a protective shell so hard they come across as arrogant and dismissive of both patient and student. It is fascinating to listen to them discussing these issues in a safe place and my hope for a future generation of empathetic doctors that are humble, respectful and good at communication soars.

But I am not naive or optimistic enough to think that this future ideal is a reality. On the contrary – our doctors train in an impossible environment; resources are scarce, language barriers and subtle racism are ever present; hierarchy overwhelms any possibility of a nurturing environment which is actually required to ignite compassion. And compassion begets compassion – seriously lacking in our health care system. Getting further in your career requires proving yourself to our colleagues, not to our patients.

I am sure many reading this will assume I am referring to the public sector. However all doctors start in the public sector and very often when moving into the private sector find themselves  alone, battling the balance between patient expectation and the ever powerful medical aid schemes.

And on the other hand, patients have a lot to answer for. They stand for it. Too often patients are still scared of the doctor. I think of the times that I have received substandard care or poor communication at the hands of some very well acclaimed professional and let it slide. It is easier to complain to friends and family after the fact.  The last time I stood up for patient rights in a personal capacity, the physician accused me of wanting to kill or euthanase my own father!

But perhaps our health care system needs something different. Litigation or suing rude and offensive doctors is not the solution to improving health care. If we are all too busy practicing defensive medicine, where patient and doctor are enemy, there is less investment in improvement in care.

I believe it is time for system change, where complaints can be handled in a constructive manner that results in a ‘win:win’ situation. This requires a paradigm shift where patients feel empowered to complain to have their problems resolved, and can be guaranteed that the complaint or concern will be dealt with in a compassionate manner. Doctors would in turn be able to handle complaints effectively – doctors are human; mistakes will happen – they should be brave enough to acknowledge this without fear of prosecution and punitive measures unless of course they were purposefully negligent.

This seems like a pipe dream but perhaps one day the rights of doctors and patients will merge so that a truly equal health care system based on mutual respect can emerge.

communication

 

 

Compassion Flourishes in the Face of Suffering

drought.jpg

We are suffering a terrible drought in our province; East Coast Radio started a campaign of asking people to donate bottled water to be delivered to the worst hit areas. The response has been overwhelming. Utterly amazing. 260 000 litres donated in just a few days. It is really heart-warming just how rapidly the public have responded.

But it got me thinking – people rally when there is a crisis. Human compassion flourishes when suffering stares us in the face.

So why is the public not up in arms demanding access to palliative care? Palliative care is all about relieving suffering in the ill; about quality of life. Most of us are going to get sick and yes, we are all going to die. Being ill is a very vulnerable time and I cannot think of a worse fate than suffering at the end.

A friend of mine’s husband passed away this week with a cancer. Chatting to her on the phone in his last days she was so comforted by the hospice nurse who was visiting every day. She said, “He is home. He gets to be with his 3 sons and me at home.”

How does one put a price on that?

But it does have a price. Hospices employ professional people to care for the sick and dying. Should they not earn a decent salary for that?  Almost all hospices in South Africa are run as not for profit organisations with no government funding. The salaries are well below market. Should caring for the terminally ill have to come at such a personal cost? Is it fair that we expect these organisations to run on the kindness of volunteers?

I believe we are in a crisis in this country; patients including children die in excruciating pain everyday but it remains unseen. And I guess we all hope that it is not our problem and won’t be any time soon.

But yes, we all die. It is just a matter of when.

 

I want to do nothing!

Happy new year from Umduduzi.

I have just had the privilege of being away with my family in a place my kids and I had never been to before. We were on a stunning beach island for 7 days. By day 4 my 8 year old put his foot down. In a hot-faced teary mini-tantrum he refused to go to the beach again.

Me: But you love the beach and this is a beach holiday.

Son: We have been to the beach every single day! We have spent more than 50% of every day on the beach. I’m not going.

Me: Well what woþuld you like to do?

Son: I want to do nothing! I want to stay at home and chill. I want to play Lego with my cousins.

In my mind all we had been doing was chilling, but for an 8 year old everyday he had been following someone else’s program. Up you get; brush your teeth; breakfast time; we are leaving in 10 minutes… But Mom I was just in the middle of…. Sorry my boy, it’s time to go. You can finish later….. And so the cycle continues. My autonomy trumps his every time.

And this is how it is in medicine so often. Doctor knows best, holds the power and the patient kind of has to go along with it. Being ill leaves us vulnerable – you are not feeling well and have to rely on the expertise of the health professional.

From my own experience, I believe the default position of all involved is one of positivity. Most patients hope for the best, underestimating the seriousness of the condition. Most doctors want to cure, to fix and when things start going wrong very often tend to offer the patient over optimistic treatments. It is easier to keep offering alternatives than to have the difficult conversation that perhaps doing nothing is the best way forward. Doing nothing is seldom given as an option at all. It seems that the doing nothing option would be like abandoning a patient or destroying hope.

But doing nothing doesn’t have to mean literally doing nothing. It can mean stopping treatments that are causing more harm than good, changing the focus of care and offering a different kind of hope.

Palliative care is not about doing nothing; quite the contrary. Palliative care is about doing something different. The palliative care practitioner remains the health care expert but encourages the patient to bring their own expertise -as the expert on their lives – into the arena. The patient and family are given power to make choices that are good for them.

Facing serious illness is a time of huge anxiety. Recently the father of a newborn with a dreadful condition described it so succintly. He said facing their child’s illness is like being told that you have to eat a box of food. You have to eat everything in the box whether you like it or not. But no one can tell you how big or deep the box is. You just have to keep eating not knowing how or if it will end.

Families should be assisted to navigate this time and palliative care can offer that. But sadly not enough health professionals are trained to think in this way.

So back to my holiday, we had one day where we did nothing. Recognising my child was not simply being a brat but rather that he needed to be respected as a participant in his own life. He needed a moment to be autonomous to make decisions that felt good for him.

Perhaps sometimes doing nothing or rather doing things differently is a valid option…

Perhaps patients need to start asking about palliative care and expecting their health professionals to be able to do it differently.20160112_111923

My Cup Has Overflowed!

IMG-20151218-WA0004[1]Last night I had the privilege of being counted as a good friend.

The woman who called me her friend, organised a wonderful Christmas dinner to honour and celebrate some of the relationships she has made over the years; such a special evening.

But the evening wasn’t just about fun, although much fun was had, it was also about giving back – each of the friends attending was asked to bring a donation for Umduduzi.

I was overwhelmed by each person’s generosity and willingness to support our project.

Umduduzi is the Zulu word for the comforter and to to raise funds we have been running a campaign ‘Crumbs for Comfort’, asking supporters around the world to organise small events .It is a glorious way to catch up with special people, have fun and contribute to a worthy cause.

During the evening our host read us this poem.  I thought was too good not to share.

“My Cup Has Overflowed”

I’ve never made a fortune, and it’s probably too late now.
But I don’t worry about that much, I’m happy anyhow
And as I go along life’s way,
I’m reaping better than I sowed.
I’m drinking from my saucer,
Cause my cup has overflowed.

Haven’t got a lot of riches,
and sometimes the going’s tough
But I’ve got loving ones all around me,
and that makes me rich enough.
I thank God for his blessings,
and the mercies He’s bestowed.
I’m drinking from my saucer,
Cause my cup has overflowed.

I remember times when things went wrong,
My faith wore somewhat thin.
But all at once the dark clouds broke,
and the sun peeped through again.
So Lord, help me not to gripe,
about the tough rows I have hoed.
I’m drinking from my saucer,
Cause my cup has overflowed.

If God gives me strength and courage,
When the way grows steep and rough.
I’ll not ask for other blessings,
I’m already blessed enough.

And may I never be too busy,
to help others bear their loads.
Then I’ll keep drinking from my saucer,
Cause my cup has overflowed.

Author: John Paul Moore

Have a wonderful Festive season and may we all drink from our saucers in 2016!