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On 18 March, a high level national stakeholder meeting for children with serious illness took place in Johannesburg.

Rare Diseases SA was asked to make representation at this meeting on the patients perspective, as well as participate in the discussions that took place on the day.

The full minutes of the meeting are available, but we thought we would share some of the most prominent points:

Dr Dhlomo, MEC for Health KZN: opened the meeting and commented that if a doctor gives you a diagnosis of 3 years to live, don’t you want to live comfortably for 3 years pain-free?

PatchSA Ambassador Huyaam Samuels: Huyaam spoke about her condition and her struggle to get pain control. She struggled for eight years to find a doctor who understood her pain and was prepared to manage it. She has a rare condition associated with dislocations of her major joints. Because doctors could not see a site of injury they did not take it seriously. Huyaam is now an ambassador for palliative care to make sure patients get heard.

Dr Michelle Meiring, Chair of PatchSA: PatchSA is a national network that aims to share specialised knowledge to ensure best possible palliative care and includes doctors, nurses, social workers, families, communities, lay volunteers. There are separate healthcare and family networks, with the family stream headed by Melissa Platt. Community membership includes individuals, corporates, donors. The aim is to support the healthcare worker and the family in need. See for further details. Some of the issues raised by Michelle include:

1) Lack of Data

2) Very few palliative care specialists

3) Lack of implementation of existing policy

Some of the low hanging fruits that were identified:

Extension of the care dependency grant

– Paediatric Clinical Guidelines

– Update the Paediatric EML with the drugs needed for pain

– Focus on Intermediate Care Training

– Support Specialist training

– Government-funded posts at four regional centres

Follow RDSA on Twitter to get the latest @RareDiseasesSA

Mark Heywood, Section 27: Mark presented on the Constitutional Imperative – how do we match the expertise with resources to realize the right of access to palliative care?

Dr Charmaine Blanchard, Wits University: Provided insight on the national policy framework and strategy on palliative care.

The Expert Panel facilitated a multi-sectoral discussion on various aspects of palliative care, including the situational analysis, medicine availability, implementation, education as well as outcomes.

Before closing the meeting, Dr Michelle Meiring said that a further outcome will be to collect the Recommendations from this meeting together into a Declaration that we hope everyone will sign up to.

To read the full report on the high level national stakeholder meeting for children with serious illness – click here.

To view a previous presentation made by RDSA at the ICPCN conference on Palliative care in 2018, click here.

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