Childhood Diseases

Updated 23 October 2017

‘Palliative care gave me hope when there was none’

PatchSA helps both patients and families cope in the case of a child suffering from a terminal disease.

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In most cases parents aren’t prepared to handle the emotional, physical or financial shock of having to deal with a child suffering from a terminal disease. 

Many children suffer from life threatening illnesses – a situation that also has a huge impact on their families. Parents often struggle to cope with the financial burden and providing the emotional support these patients require.

Paedspal consults with about 25 new and existing patients weekly, and will reach nearly 300 patients by the end of the year.

An array of services

South Africa released its first national palliative care policy, developed by the National Department of Health together with palliative care experts.

In the Western Cape, parents have the support of Paedspal, a public-private programme that assists and supports children living with terminal illnesses. They offer an array of services ranging from aromatherapy massages to family counselling sessions with the strong support of three doctors, a social worker and several nurses.

Health24 previously reported on 11-year-old Naaziyah Manuel who passed away from ovarian cancer. Her mother, Zerina Amien spoke to us about the support Paedspal offered both Naaziya and the family.

Not only did Paedspal offer emotional support, they also gave both mother and daughter the opportunity to relax and destress with aromatherapy massages.

She also explained that all counselling sessions between patients were confidential.

“Conversations between Naaziya and them [Paedspal] were confidential, as were the conversations we had with them.”

A rare medical condition

Together with Paedspal, a palliative network called PatchSA (Palliative Treatment and Care for Children of South Africa) within SA is an inclusive network that offers advice, tools and opportunities to both patients and their families or caregivers.

palliative care,huyaam,patchsa,paedspalSpeaking to PatchSA Ambassador and Palliative Care Advocate, Huyaam Samuels explains her struggle living with a rare medical condition called Pseudoachondroplasia and Hypermobility Syndrome. This condition causes severe chronic pain throughout her body with muscle spasms – but doctors couldn’t pick up what was wrong.

'They gave me hope'

After receiving tireless help and support from Dr Meiring, CEO and Paedspal Paediatrician, and the team of doctors, Samuels found new hope.

“Living with a rare medical condition, doctors failed to believe the pain I was in or take me seriously.

“Palliative care has given me hope when there was none. They improved the quality of life for both my family and me.”

Their work is mostly done through their website and social media platforms as they aren't  always able to engage with patients on a one-to-one basis.