South Africa has been severely affected by the Covid-19 pandemic, and ASBAH-SA has complied with the rules put in place by the SA Government in this regard. The lockdown imposed on all citizens, with public transport being affected, has impacted on persons who have Spina Bifida and Hydrocephalus, so that they have difficulty to access their hospital appointments and collect their consumables and medication.
The ASBAH Caring Centre has not been in operation, hence patients were not able to receive advice, counselling nor assistance. The 2 ASBAH-SA Co-ordinators, Zubeida and Rozanne, have strived to keep telephonic contact with patients in this time.
Home visits to them has become increasingly more difficult. This has also negatively affected our ability to start the planned community support groups.
However, we are proud to have started a SBH Helpline with a team of mothers of patients as well as an adult who have SB. They are experts by experience and are in contact with the Centre co-ordinators for guidance and direction.
ASBAH has a continuously growing database of patients and the aim is to connect with these persons individually.
The Helpline programme is aimed to also provide each patient with a handheld personal record card.
This record card will be used as a quick information tool when the patient presents at a clinic or emergency room for assistance. It is envisaged that the card will ensure that potentially serious complications are evaluated appropriately with undue delays in treatment.
This card would also serve to educate attending service personnel who may be unfamiliar with the required bladder and bowel regime of a patient with SBH
Steps of 3 hourly bladder emptying and the use of a daily bowel washout bag, as well as medication in use, will be on the card.
The risk of raised intracranial pressure caused by the blocking of shunts in patients with Hydrocephalus (excess water on the brain) needs to be communicated to attending staff, thus the handheld card would be a help in not wasting time for urgent professional intervention.
Despite the current pandemic that threatens the patients and their families, ASBAH is still continuing to provide an education and information resource service to support an improved lifestyle of its patient database in the difficult times.
There are however still need for support and linking patients to known resources for assistance and to continue to educate them about the use of the face mask, social distancing and hygiene and sanitation.
Melyka Fredericks: 061 416 6117
Ncediswa Nakani: 068 176 9828
Shehaam Hassen: 068 096 6090