“We have a moral obligation to do our best to ensure that no child dies in pain”

Categories: Care.

Over the last few decades children’s cancer care has improved dramatically in high income countries, increasing progressively to survival rates of 75% – 80%.

More than 80% of the world’s children however, live in low-middle income countries, where survival rates for children with cancer can be as low as 5%. In these countries tens of thousands of children die needlessly every year, most without any effective pain relief. A lack of awareness about childhood cancer and too few trained healthcare professionals, along with the mistaken belief that childhood cancer is too difficult to cure, all combine to result in very low survival rates.

The fact is, at least 50% of childhood cancers can be cured with relatively simple and inexpensive drugs and procedures which have been used by doctors for decades. This is true even in resource-poor settings.

World Child Cancer works to redress the imbalance in diagnosis, treatment and care for children with cancer in low-middle income countries. The charity was founded in 2007 with a belief that childhood cancer care should be available to all children, especially adequate pain relief for children with incurable cancer.

The charity facilitates and funds twinning partnerships by linking hospitals in resource poor countries with experienced childhood cancer hospitals in high income countries. Vital medical expertise is transferred between professionals involved in the twinning partnership, resulting in an increased capacity to treat children with cancer.

One of the main problems that World Child Cancer is trying to tackle is the lack of palliative care for children in low-middle income countries.

Palliative care for children with cancer should start at the point that they are diagnosed. The relief of symptoms, especially of pain should be a fundamental component of cancer care. Due to a lack of awareness about the early warning signs and symptoms of cancer, poor access to healthcare, delays in diagnosis, misdiagnosis and other major problems; children often arrive at hospital with an advanced stage of disease and a cure is no longer possible.

In 1986 an essential list for palliative care drugs was published by the WHO, but despite this there are many challenges faced with ensuring that children receive adequate pain relief. Stigma and fears about the use of opiate-based pain medicines are a major barrier, as well as the misbelief in many low-middle income countries that children do not feel pain. Very few low-middle income countries produce drugs in-country, and more often than not too few of the cytotoxic, supportive care and palliative drugs are imported. This means that many children are not able to receive the pain relief drugs they need, and those with incurable cancers are often sent home with only paracetamol to relieve their pain. It is a worrying fact that 90% of the world’s morphine is used in just 10% of the world’s countries.

An important component of the twinning partnerships which World Child Cancer funds is the training element which allows doctors, nurses, social workers, pharmacists and others in the project hospitals to benefit from the expertise of their counterparts in the high income hospital with which they are twinned. The training takes many formats; long-stay secondments in the project country, bi-annual 2-3 day workshops, CPD lectures, conferences, one-on-one mentoring and regular online communication.

Training covers a variety of topics such as early warning signs, supportive care and palliative care of children with cancer. Professionals at the project are trained in the holistic palliative care of children, not only in the importance of providing effective pain relief but also in the psycho-social aspects of this care.

The first unit we started working with was in Malawi in 2009, based in the Queen Elizabeth Central Hospital in Blantyre. The Paediatric Oncology ward was opened in 1997 and is headed by Prof Elizabeth Molyneux who has been working in Malawi for more than 40 years. She was one of the pioneers of a paediatric palliative care service in Malawi, the first of its kind in Africa, in 2002. The main use of the service is for children with cancer, who are seen by palliative care specialists as soon as they are admitted, and are attended by the team daily.

The palliative care team provide holistic support for children and their families, not only for the pain relief aspect of palliative care.

“Palliative care and cancer care go hand in hand with each other. We must cure where we can, but we must also give comfort and care to any who need it,” said Prof Elizabeth Molyneux.

We have a moral obligation to do our best to ensure that no child dies in pain, or without comfort.

More information:

Web: www.worldchildcancer.org
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This article first appeared in the Africa edition of ehospice

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