Dr Pat takes CHAS to South Africa

Inspiration, Innovation, Integration

The conference was entitled "Inspiration, Innovation, Integration", and for me, it certainly did inspire.

The ICPCN's mission is to achieve the best quality of life and care for children and young people with life-limiting conditions, their families and carers worldwide by raising awareness of children's palliative care, lobbying for global development and sharing expertise, skills and knowledge - a mission which wholeheartedly reflects CHAS' core values.

I attended the second conference in Buenos Aires in 2016, where there was much to share and learn, but where I also took the opportunity to visit neonatal and paediatric intensive care units to see Argentinian models of care for myself - this certainly cemented my thinking that one model of care 'does not fit all'. I was very much looking forward to visiting South Africa to see how paediatric palliative care functioned there, but also to see how it was developing across large parts of the world, as there were over 300 delegates present from 41 nations.

The lead up to the conference was a really busy time for me at CHAS and included a trip to London to meet with colleagues to look at how the Royal College of Paediatrics and Child Health could support families and health care professionals who become involved in a high profile case - similar to the Charlie Gard and Alfie Evans cases, which played out heavily in the media.

I then travelled to Aberdeen the next day to offer a presentation illustrating reorientation of care for children with complex palliative care needs to colleagues from Inverness, Fort William, Dundee, and Forth Valley Royal Hospital which all forms part of a North of Scotland network.

On Saturday 26 May, I awoke to beautiful weather in Fife and I enjoyed running five miles along the coastal path - it was an exceptional Scottish morning. I returned home to pack and travel to Glasgow Airport to board my flight.

After a 24 hour journey into Durban, I collapsed into bed but awoke by 5am. I decided to head onto the beach for a very similar but also quite different five mile jog. The waves were much bigger coming in from the Indian Ocean than in the Forth Estuary.

I was amazed that no one was swimming in the beautiful Indian Ocean on the first few mornings, but then I saw a very clear international sign!

ICPCN

Thursday 31 May saw me co-chairing an afternoon concurrent session with Dr Ana Lacerda, a Consultant Paediatric Oncologist in Portugal, who is part of a team implementing a palliative care team in every children's unit in her country. I believe that there is much to be learnt from Ana, as CHAS also continues to extend its reach.

On Friday 1 June, I presented a session on "Innovative models of transitioning from children's to adult palliative care services". I was looking forward to sharing CHAS' world-leading work two years on from the last conference where I had introduced delegates to The ChiSP Study - Children in Scotland requiring Palliative Care: identifying numbers and needs. A ground-breaking piece of research, which for the first time identified the real need for children's palliative care across Scotland. We have the promise of a second such report (ChiSP 2) some time over the summer when we will be able to look at any emerging trends.

However, ahead of this, I was able to highlight how the study was helping CHAS to realise its ambition of delivering high-quality, person-centred care to every family across Scotland who could benefit from it. I was also able to illustrate the work of CHAS' Transition Team which has been skilfully involved in supporting 90 young people into adult services and age appropriate care, and demonstrating many of the advantages to young people but also highlighting some of their challenges.

In the conference, Professor Downing made a welcome introduction and reminded delegates that there are an estimated 21 million children worldwide with palliative care needs. Her address was followed by three inspirational presentations:

• Dr Sibongeseni Dhlomo, MEC for Health, KwaZulu-Natal, who described his government's commitment to children's palliative care in South Africa, where the task is immense.
• Dr Marie-Charlotte Bouesseau, Adviser at the Department of Service Delivery and Safety at the World Health Organisation, who explained the important work and advocacy for children's palliative care going on across the globe.
• Dr M R Rajagopal, Pallium India, who is gradually challenging the regulatory barriers in the availability of oral morphine for pain relief in India. I was able to purchase a copy of his DVD, "Hippocratic: 18 experiments in gently changing the world", and he urged us all to think "out of the box" but certainly not to just think it, and in India he continues to challenge the government so that the use of morphine type drugs becomes legal for more children. It is little wonder that he is a 2018 Nobel Peace Prize nominee.

One of the most memorable presentations was by Dr Neil McKerrow, Head of Paediatrics and Child Health for KwaZulu-Natal. Speaking about his province, he said:

• 50% did not have access to running water
• 20% go to bed significantly hungry
• 39% of pregnant mothers are HIV positive.

Where such figures exist, inevitably, there are high childhood mortality rates and Dr McKerrow stated the absolute to improve therapeutic and palliative care on an urgent basis, and for there to be an integrated service based not just in the hospital, but in the rural communities. I have many exceptional memories of this conference in South Africa, and the challenges that it set for us all, not least from Dr Rajagopal and Dr Bouesseau in terms of "gently but relentlessly shaking the world".

I believe in CHAS we have already started this, and we must, must, must continue this important work, and working with you all, we can and will do this.