The SCORE for Health Data Technical Package represents the most comprehensive strategies and interventions for strengthening country health information systems. First launched in August 2020, it is a one-stop solution to improve the availability of timely, reliable and comparable health data to track progress towards the Triple Billion targets and health-related Sustainable Development Goals.
SCORE is the first time that all elements comprising an optimum health information system – Survey, Count, Optimize, Review, Enable – are captured in a single, harmonized package.
To mark International Childhood Cancer Day Patch SA is spreading its digital wings by opening its online learning platform. The Patch Academy provides accredited CPD certificate courses on aspects of children’s palliative care especially relevant for South Africa. Are you a health care provider working in South Africa? The courses are open to doctors, nurses, social workers, psychologist, pharmacists, therapists and in fact anyone who wishes to learn how to provide palliative care to babies, toddlers, children and adolescents. The courses are accredited by The Colleges of Medicine of South Africa.
Ben and the Hawkes’s inspiring story
Anton and Angie Hawkes gave permission for the use of this story and image. This is not just Ben’s story but that of the whole family.
Benjamin Hawkes was just 10 years old when he was diagnosed with osteosarcoma (bone cancer) and over the next ten months, he underwent chemotherapy, limb salvage surgery and radiation therapy. A clear PET scan at the end of this arduous treatment was cause for celebration, but two months later it was found that the cancer had metastasised and was invading Ben’s lungs.
More aggressive chemotherapy and many difficult weeks in hospital followed, leaving Benjamin weak and uncomfortable with an open-ended drain inserted into his lungs. At that time the oncologist took Ben’s parents, Anton and Angie, aside and told them that there really wasn’t anything more they could do for Benjamin other than sending him to a different hospital for radiation that could extend his life for a short time.
It was and will always be one of the toughest and most difficult moments in our lives. We sat with Ben and told him the truth – something we had agreed on from the start – and his little face fell as he asked, ‘So I’m going to die?’ I replied: ‘Yes, my boy…’ We then told him that it was up to him what he wanted to do next. We could move him to a different hospital for more radiation or we could go home. Ben may have only been 11 years old but he answered, ‘I promised that I would beat this cancer and I did, but it came back and I’m just so tired. I just want to go home.’
Anton and Angie Hawkes
Surprised at their choice and reminding them that Benjamin would likely die within a few days without further treatment, Anton and Angie honoured their son’s wishes and with very little assistance arranged to collect the medical supplies and equipment needed to take him home.
Palliative care in action
Through a series of chance events, Anton received a phone call the next day recommending they contact Umduduzi Hospice Care for Children, a charity organisation that provides palliative care to children and families in hospitals and in homes in and around the greater eThekwini district. (The word ‘umduduzi’ is the isiZulu word for ‘the comforter’.) When Ben’s health seemed to improve and he outlived the 3-day prognosis from the oncologist, a concerned Anton found Umduduzi’s details online and sent them an email at midnight.
At 8 a.m. we received a phone call from Dr Julia Ambler from Umduduzi and she was at our house at 1 p.m. that same day.
Dr Ambler introduced herself to Ben. He instantly liked her because she spoke to him as an adult, never pinched his cheeks or rubbed his head, something Ben really hated. Over a cup of coffee, we had the first honest chat about palliative care, what we could expect and a conversation about death. The most notable thing to come out of this chat was that one should never give timelines about the passing of a loved one, as we found out with Ben living at home with us for almost another seven weeks. Dr Ambler advised us on what to expect in the dying stage, discussed extra pain medication to ensure Ben would be pain free as much as possible, and how we were all coping emotionally.
Ben continued to surprise us and we went on to have outings to our local beach kiosk, Crocworld and we even managed to go to the movies to watch one of Ben’s favourite sequels, ‘Guardians of the Galaxy II’. But more importantly, he was at home in his own bed with his mom, dad, sister, dogs, his guinea pigs, and his Lego.
Ben finally died peacefully at 2 a.m. in his bed at home surrounded by all those who love him…. mom, dad, his sister Abigail and dogs Teddy and mNini.
Anton and Angie Hawkes, Pennington, KwaZulu-Natal
Passionate advocates for “special time”
Having known very little about children’s palliative care before their son’s cancer diagnosis and the experience of his final weeks, Benjamin’s parents have since become passionate advocates for it.
There is a definite need to reach out to and educate doctors, medical practitioners and families about the benefits of palliative care; how important the last bit of dignity and sense of peace it brings for patients and families alike. Having the support of someone who understands what you are going through and reassuring you that you are doing the best you can do for your child, is invaluable.
Those last 7 weeks we had with our son was the most terrifying, heart wrenching, but most special time and having the support of Umduduzi, helped us immensely. The grief of losing a loved one never goes away and I know, two years on, that we still shed a tear almost every day but sharing Ben’s final moments at home as a family was, and always will be, very special.
Anton and Angie Hawkes
Children’s palliative care in South Africa
Patch SA is the national charity that supports the development of hospice and palliative care services for children like Benjamin and for all children with any type of life-threatening or life-limiting illness or condition and their families.
Despite the National Policy Framework and Strategy on Palliative Care being ratified in 2017, it has yet to be implemented and there is an enormous gap in the provision of education on children’s palliative care for medical and allied health care providers. Education in the basic elements of paediatric palliative care would ensure that children like Benjamin and his family would receive good palliative care from the time of his diagnosis, and not just in the last weeks of life.
The SANCDA supports the prioritization of phase 2 vaccination. However, how this is to happen is less than transparent. PLWNCDs and related civil society organisations keep asking for transparent processes and policy for phase 2 vaccinations. South African policy must show the priority comorbid health conditions which place PLWNCDs at greatest risk for severe COVID-disease or death.
Publish – COVID-19 deaths statistics by comorbidity/ underlying conditions.
Compile – priority evidence-based list of comorbid conditions for phase 2 COVID vaccination.
Communicate with public sector “health users” in phase 2 COVID-19 vaccination
1) Publish – COVID-19 deaths stats by comorbidity
The SANCDA want the ongoing publication on COVID-19 deaths according to the main underlying comorbidities. Civil society believes the release of this information is essential for transparency. The NDoH has this information for hospitalised patients. Sadly the format of publication doesnt show linked comorbidities.
However, before COVID-19 people who die outside of a hospital, the cause of death is notoriously poorly recorded. The challenge to the data collection is a long-standing issue. The most recent report from the 2016 cause of death statistics shows that 32.5% of reported deaths has this information missing. The top category of death is NCDs in 2016 but there has not been a publication on cause of death in SA since then.
This information is critical to ensure that the limited number of doses 12 million (6 million people we think) go those in greatest need according to facts.
The challenge is that outside of the NCDs sub directorate, the NDoH does not respond to our many requests for information. The NCDs civil society experience is that the long-held NDoH priority conditions of HIV, TB and malaria always remain just that. NCDs may get a mention and usually only diabetes and hypertension. So we want all of society to ask on behalf of the people living with NCDs.
2) Compile priority evidence-based list of comorbid conditions
So far in this pandemic we havent seen any transparent evidence based list of priority comorbid conditions. So how is this the priority to be determined? Compared with Millenium Development Goal (MDG) conditions like HIV/TB there are few NCDs indicators as shown in the National Indicator Data Set 2016.
South African health policy appears to be silent on how health priorities are determined. One of the few policies that address the needs of the population (priorities) is still in draft format and relatively recent, NHI Bill 2019.
PLWNCDs and their representative organisations wish to participate in and have a transparent evidence-based process to determine priority need and the criteria upon which this is based.
3) Communicate unambiguously with public sector users
The SANCDA asks for transparent clear communication on how people without health insurance/ medical aid will be selected and notified of vaccination date and time. There are no adequate health systems information for people with NCDs. The current NHI health systems information is based on HIV and MDG information. MDG conditions formed the basis for the development of health systems strengthening information system development and programmes such as the “Ideal Clinic.” integrated chronic disease management and CCMDD are all examples. See the CCMDD access to medicines information and raise a storm.
Infographics for you to use to help you manage your on NCDs condition during COVID-19. These infographics, created with our partners, and used on the SANCDA helpline and used by the government.
