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Scotland’s role in the global fight for child palliative care

This opinion piece is almost 6 years old
 

Dr Pat Carragher shares his reflections on the third International Children’s Palliative Care Network Conference (ICPCN) in Durban, South Africa

The International Children’s Palliative Care Network’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. It does this by raising awareness of children’s palliative care, lobbying for global development and sharing expertise, skills and knowledge – a mission which wholeheartedly reflects Children's Hospices Across Scotland (CHAS) core values.

So, with that in mind I head off to Durban, South Africa at the beginning of June for its networking conference, entitled “Inspiration, Innovation, Integration”, and for me, it certainly did inspire.

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

Dr Pat Carragher
Dr Pat Carragher

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 study Children in Scotland requiring Palliative Care: identifying numbers and needs. This ground-breaking piece of research for the first time identified the real need for children’s palliative care across Scotland.

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.

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 from KwaZulu-Natal 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 Organization, explained the important work and advocacy for children’s palliative care going on across the globe. Finally, 2018 Nobel Peace Prize nominee Dr M R Rajagopal from Pallium in India, explained how he is gradually challenging the regulatory barriers in the availability of oral morphine for pain relief in India.

One of the most memorable presentations throughout the whole conference was by Dr Neil McKerrow, head of paediatrics and child health for KwaZulu-Natal. Speaking about his province, he said 50% of people don’t have access to running water, 20% go to bed significantly hungry and 39% of pregnant mothers are HIV positive.

Where such figures exist, inevitably, there are high childhood mortality rates. Dr McKerrow stated the urgent need to improve palliative care.

I have many exceptional memories of this conference, 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 continue this important work, and working with my fantastic colleagues, we can and will do this.

Dr Pat Carragher is medical director at CHAS