Future care for kids at DFTB17

This talk was recorded live at the end of the second day of DFTB17 in Brisbane. If you missed out in 2017 then why not book your leave for 2018 now. Tickets are on sale for the pre-conference workshops as well as the conference itself at www.dftb18.com.

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Dr Sarah Dalton is the President of the Paediatrics and Child Health division of the Royal Australian College of Physicians. She is also one of the organizing committee of the upcoming OnTheWards18 conference.

When not attending conferences she works at The Children’s Hospital at Westmead as a Paediatric Emergency Physician.

In this talk she takes us through a case that has stayed with her and how things might be different in the future.

In 1984 Fiona Coote was the youngest Australian recipient of a heart transplant. It was a case that gripped the nation as crippling heart failure set in after a seemingly innocuous illness.

Extra Corporeal Life Support was introduced just 4 years later at RCH and since then over 420 babies and infants have benefitted from the program in Melbourne alone. What else will the future hold?

You can listen to this talk as you walk to work on any device that supports podcasts.

Or just sit back and watch.

 

And here are the doodles that the fabulous Claire Chandler made at the time…

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DFTB go to the Academy

Attending a first-time conference is a bit like watching a softball match as a much talked-about rising ‘star’ batter comes onto the field to face-off against a seasoned pitcher. Will they strike a home run or will they simply get struck out? Most want the batter to do well and may even expect it – but there is the sense of anticipation and uncertainty in the air until that moment in time when the bat and ball connect and the latter goes flying.

The Academy of Child and Adolescent Health held its official launch on the 1-2nd of March at the Royal Children’s Hospital in Melbourne and Henry and Grace were lucky enough to be able to attend. The ACAH is a non-profit organisation founded with the purpose of “promoting the health and well-being of every newborn, child and adolescent in order that they may reach their maximum potential”. This concept grew out from a RACP focus group though the ACAH is open to all health professionals. The conference focused on key issues related to child and adolescent health. It also explored the ways that the ACAH may be able to make a difference in the areas of education, policy making and advocacy.

Day 1:

Keynote

One of the highlights of the ACAH morning session was the keynote by Kim Oates. He discussed some of the key areas he thought the ACAH might address in the future including indigenous and refugee healthcare, domestic violence (and child maltreatment), patient safety, parenting support and culture in healthcare.

ACAH board and strategic directions

Of particular note during the morning session, the entire board came to the front and introduced themselves and fielded questions about the ACAH and their involvement to date. In the afternoon there was also a review of the strategic planning day which involved multiple paediatric subspecialty groups discussing some of the steps the ACAH might make to become a central hub that strengthens and utilises the skills and resources in these other organisations in addition to producing its own material.

Living with disability

The midday session featured a fantastic panel on navigating disability. One speaker who particularly impressed us with Jacki (Jax) Brown who spoke on how the way that disability affects and encompasses each individual uniquely. She also raised the importance of considering wheelchair accessibility of events, healthcare venues, work and public transport. Simply being labelled “Wheelchair Accessible” does not mean that a building is wheelchair friendly. Sometimes it might be a separate entrance around the garage which requires buzzer accessmaking the people using it feel excluded. Jax asked us to model inclusion and not ignore disability when we see it – but to respect people living with disabilities, remember that they have value and enable them to define for themselves who they are and what their identifies are. She also encouraged a move away from treating people with disabilities as passive receivers needing to ‘justify’ their needs, but rather to engage and work together with people with disabilities on the structure and social barriers that are causing problems for equity.

Asylum seekers, children in detention

The afternoon session was divided into a presentation from Megan Mitchell – the National Children’s Commissioner and a strategic planning session. This  encouraged delegates to add their thoughts regarding the future direction of the ACAH. Megan Mitchell’s talk focused on presenting the findings from the recent report into Asylum Seekers, Refugees and Human Rights. She pointed out that Australia has now been elected to the UN Human Rights council for the next three years and that this could be a critical time to uphold and support the human rights of asylum seekers, refugees and indigenous populations in Australia. After many years, Australia has finally committing to ratify OPCAT (Optional Protocol to the Convention Against Torture and Other Cruel, Inhuman or Degrading Treatment or Punishment). OPCAT should apply to all places of detention in Australia, including prisons, juvenile justice and mental health facilities, and immigration detention. Megan shared her experiences talking with children in Australia and offshore centres ias well as some of the terrible conditions children have been subjected to – conditions such as having hygiene products withheld for misbehaviour and placing children in prolonged isolation for up to 20 hours a day. These methods of discipline have been teaching children that the abuse of others, especially those less powerful, is normal. It is also likely to be traumatising already vulnerable children and adolescents.

Overall verdict after day 1:

Although the ACAH provided no ground-breaking change in terms of the experience compared with more traditional conference – we still enjoyed it. The talks were, for the most part, on-point. There was a good buzz and question time for every talk was filled without difficulty.

 

Day 2

If the first day of the conference is like the time a batter comes to the plate, the second day of a conference is the bottom half of the game. It’s all about finding and keeping the lead. It’s also a nice part of the game because there’s momentum to play off and you’re more familiar with and more invested in the delegates and topics as whole.

Human Digital Interface of Healthcare

This morning session opened with Gareth Baynam discussing digital diagnosis and the search for answers for children suffering from rare diseases. Kath Carmo discussed the value of telemedicine used by the NETS team in retrieval to help guide support and make decisions about transfers. She also explained the importance of retrieval of sick kids in having equitable access to healthcare. James Dromey’s talk was focused on future digital platforms and the way that healthcare can work with IT and tech companies to create new software and hardware to help with preventative medicine and provide education for both healthcare workers and families. He honed in on the importance of product development which doesn’t just ‘sound’ like a good idea – but which is user-centred and has both proof of concept and sustainability.

Advocacy & Global Health

The second session was an intriguing look into how the American Academy of Paediatrics, the UK RCPCH and the Paediatric Society of Australia and New Zealand have grown and developed their role in advocacy and global health. The importance of engaging members and using multiple different approaches in advocacy was stressed. Another element in the early afternoon session was a thoughtful speech from Dame Quentin Bryce who officially launched the ACAH and reaffirmed key areas in need of advocacy such as indigenous health, adolescent health, supporting research and the value in engaging whole families in care for children.

Safe Spaces for Children

The last session for the meeting was broad but interesting –  relating to the areas of social media, dealing with violence and providing a legal perspective on children and media. In particular, Donna Cross shared the interests of CoLabforKids and discussed the need to appreciate the nuances of managing screen time and social media. It is not enough to simply say that children should only have X amount of screen time; rather it is important to also look at the quality of the time and use. For example –  Is it watching movies in the car or is it with grandma reading an interactive online story book? The latter is much more likely to be beneficial to learning. On the topic of cyber-bullying and social media use – Donna made a great analogy to water safety. Swimming pools are both beneficial but dangerous. Children and adolescents need training, supervision, appropriate barriers and supports to safely enjoy and utilise them.

Overall Impressions

The ACAH launch was relatively small but filled with many experienced and respected individuals. There was a keen sense of anticipation in the air and thoughtful debate around key issues of advocacy. There were a number of strong speakers but I particularly liked disability panel and thought it worked well. It was very good to see patient and family representation at the conference. The ACAH team also showed a willingness for transparency and utilising a grass-roots approach. This was seen through the opportunity for discussion during and between the conference about the ‘where to from here’ and brainstorming of opinions about areas for priority and methods that might be employed. The majority of delegates were paediatric consultants although a few GPs also attended. It would be good to see further diversity in the board, speakers and delegates across health professionals given the aim and goals of the ACAH. The conference validated, in my mind, both the great need and opportunity for an organisation like the ACAH and I found myself registering for membership by the end of it. Whilst they may have won the game, there are many more matches to come. It will be of the great interest to follow how the ACAH board and members make good on their intentions from this launch in the next few months.

For more on the ACAH or to join membership check out www.acah.org.au

 

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Where living to your 6th Birthday is a miracle

I’m currently working in a rural Paediatric HDU in Kenya, and removed from the incredibly high-level (and free) health care we can access in Australia. I’m reminded that while we see and treat many sick children each day in our tiered health care system in Australia, the children we treat are really the tip of an enormous global child health iceberg.

Just like that feeling of starting your internship or your first ward shift as a registrar, I anticipated the first few weeks working here to be an adjustment. But what I hadn’t quite prepared myself for – despite a decade working in development economics and community health projects across East and West Africa – was the incredibly, unjustifiably and unfairly high child mortality rates.

Here in Kenya, we have 8am handover meetings, just like we do at my tertiary teaching hospital in Australia. The night staff present their cases, and consultants quiz and often intimidate in their teaching. And just like at home, we start with the admissions, then the high acuity cases. But that’s where the familiarity ends: the third part of every morning meeting is consumed with then discussing the mortalities. Often one case, sometimes up to five – and so many are such simple and avoidable deaths.

Almost six million children worldwide die before their 6th birthday each year. That’s 16,000 children dying prematurely every day – 680 every hour – or 12 perishing every, single, second. The vast majority of these deaths are completely preventable. And for no reason aside from a geographic lottery, a child who is unlucky enough to enter the world from the womb of a mother living in sub-Saharan Africa is 15 times more likely to be one of those mortality statistics than is a child in Australia.

While we are fortunate to consider a clinical trial enrolment or the latest immunotherapy for a child presenting with malignancy in Australia, an intermittent supply of pethidine is all that is available here to palliate a child presenting with simple leukaemia. Burns that are routinely referred to tertiary specialist units in Australia receive nothing more than simple dressings and completely inadequate analgesia; ubiquitous wound infections leave permanent scars on subsequently deformed little limbs. A simple case of gastroenteritis that would score a trial of fluids in our well-resourced Emergency Department is a death sentence to the severely malnourished baby who is being fed unpasteurised cow’s milk due to a lack of maternal milk supply. Exhausted and weak mothers rest their head by the side of their sick children all day, hoping for a miracle. The wails from mothers whose children die are deep, pained and relentless; echoing through the ward revealing a soul full of pain.

The Lancet has recently updated the comprehensive and excellent epidemiological data of the Global Burden of Disease study, examining the trends that constitute the large, hidden, floating iceberg at the depths of the world that is the avoidable morbidity and mortality afflicting so many children. While child mortality rates have diminished globally over the past five decades, increases in mortality have concurrently occurred in some age groups and inequalities within countries are growing. Sub-Saharan Africa remains the most dangerous place to be born, with one child in every 13 dying before their 5th birthday. Equating this to an Australian preschool setting, that’s one to two children from each preschool class dying before they even have the opportunity of starting primary school.

While we excel in discovering new treatment options for rare diseases in high-income settings, it is worth remembering that by far, across the world, the huge volumes of children dying every day are succumbing to simple diagnoses that need simple medicine. The number one cause of death in children under five globally remains simple lower respiratory tract infections, followed by diarrhoeal diseases and malaria. In neonates, neonatal encephalopathy due to birth asphyxia, prematurity and sepsis predominate as the top causes of death; together causing an enormous burden which is largely preventable. I see these statistics on a daily basis – the midwife carrying in another seizing baby who hasn’t been able to be monitored in delivery due to a lack of staff (often in the realm of ten deliveries per midwife per shift); the toddler whose extremities I feel become cooler and cooler as their gram-negative sepsis overwhelms the highest antibiotic option I have access to on the ward; the neonate with meconium aspiration syndrome who desperately needs HFOV and nitric oxide but is struggling to breathe in a facility that can offer nothing beyond high-flow oxygen.

Cause of death in children <5 years; 2000-2015. Source: Global Health Estimates Technical Paper WHO/HIS/IER/GHE/2016.1

 

As paediatric health professionals, we have an innate responsibility to address health inequality on a local and global scale. In Australia, health outcomes continue to be affected by wealth, with disparate familial incomes affording faster access to elective procedures for those with private health cover, while limited household budgets restrict food options and result in iron deficiency that may impact learning outcomes for a child in school. With child mortality rates in Indigenous Australian children persisting at almost double that of non-Indigenous children, there are a multitude of ways that we, as health professionals, can advocate for change and improving equal health care and outcomes across Australia.

So what can you – as one doctor, in this vast ocean filled with icebergs – do? Be vocal about health inequalities in our own nation and use your position to advocate to Close The Gap. Encourage others to gain an understanding of global health and inequity issues, and to appreciate how our world has evolved to be such an inequitable place (I previously wrote about the West’s role in creating sub-Saharan Africa’s current state here). Familiarise yourself with the UN’s Sustainable Development Goals and advocate for our leaders to support them. Lobby the Government by making a stand over our deplorable treatment of refugees, or to increase our paltry international aid budget. Gain knowledge in understanding the complex social determinants that trap a child in poverty.

And don’t underestimate the difference you can make in using your skills in developing countries, either by contributing to long-term research or clinically, even if just for a short time. In Malawi’s main tertiary hospital, the infant mortality rate dropped significantly through the vision of one paediatrician who instigated simple measures such as kangaroo care, low-cost CPAP solutions and antenatal steroids and antibiotics for preterm labour. Use a week or two of your annual leave to assist in teaching APLS courses or the “Helping Babies Breathe” programme in low- and middle-income countries, or volunteer with organisations such as MSF (or if, like me, you have an entourage of children to consider – there are others that accept children as part of family placements, like the Red Cross or Mercy Ships). You can search for a country and length of time that would best suit your availability here or here. But bear in mind that while sharing your skills and advocating for improved global child health equality is admirable, medical ‘voluntourism’ is not always a good thing and you will – most likely – gain more (on a personal level) than you can give. Focus on strengthening local health systems, not replacing them; and addressing the root cause of global health inequalities by considering the social determinants of health. Speak up as a vocal voice to advocate change. Piece by piece, as Paediatric Doctors across the world, we can together chip away at the enormous child mortality iceberg and with sustained input, we can make an impact within our lifetime.

 

If you want to learn more about the role we can play then watch Nat Thurtle’s talk from DFTB17 – What is a doctor now?

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