Standing Voice is an international non-governmental organisation based in Tanzania, Malawi and the UK. Standing Voice defend the rights of people with albinism by delivering Health, Education, Advocacy and Community Programmes.

2019: £1,150 to support the delivery of dermatological healthcare to people with albinism

We are very grateful to the Friends of Malawi Association for supporting Standing Voice to provide life-saving care to people with albinism during this difficult period.’

Emily SPence, Programme Manager, 2020

To ensure people with albinism continued to receive life-saving support during the COVID pandemic, Standing Voice implemented a holistic programme of remote support during this time. Activities included:

  • Distribution of emergency care packages including sunscreen, facemasks hygiene kits and health information booklets to 531 people with albinism between August and November 2020
  • Delivering skin consultations clinics. Healthcare workers were able to visit 43 health centres over 5 districts helping patients avoid public transport by reviewing them nearer their communities. Community dermatologists trained by Standing Voice undertook comprehensive clinical examinations on all patients, referring those in need of more advanced treatment
  • Holding health education sessions on sun protection and also COVID 19 including an awareness video on how to care for people with albinism
  • Establishing a dedicated hotline for people with albinism providing help to callers requiring information, supplies of essential sunscreen or support if there was a threat to their safety. People with albinism are often the target of violence and discrimination in Malawi, in part because of witchcraft-related beliefs in the value of their body parts.  One caller even sent pictures of a lesion and has since been referred for treatment
  • Funding a group of tailors with albinism to produce protective face masks for distribution through care packages
  • Supporting high-risk and palliative patients
Health awareness class at the skin clinic
Providing skin treatments
Making face masks to distribute to those visiting the clinics

2020: £1,000 to purchase 3 ipads to use the CommCare app in skin clinics

In 2020, Standing Voice implemented a new electronic data collection system hosted by CommCare, to be used in the Skin Cancer Prevention Programme (SCPP) in Malawi. The new patient management system will facilitate data
entry at all clinics and ultimately improve the quality of care by allowing instant monitor of patients’ skin health over time, delivery of services tailored to individual needs and help in identifying trends in patient data.

CommCare has made our clinical delivery much more streamlined and efficient. Moving forward, the database will enable close monitoring of individual patients as well as wider analysis of clinical trends. It will be a vital tool in strengthening and developing our programme.

Bonface Massah, Country Director Malawi, 2020

Bob Kubwenza, Dermatology Officer commented on the programme saying:
“The introduction of the new database has made our job much simpler. Using the tablets is fast, so I was able to see many more patients at the clinic compared with when we were using paper questionnaires. CommCare has helped ensure clinicians are very thorough when conducting full body examinations, by making sure we do not miss any body parts out. Patients are no longer complaining of long waiting times as the process is much faster for them, including the distribution of sun protective items.”

In April/May 2021 the new data collection system was piloted at SCPP clinics in the districts of Nkhotakota, Salima and Mangochi. Doctors examined patients’ skin, delivered sun protection education and administered on-site treatment including cryotherapy and surgery as needed. Patients also received a renewed
supply of a sunscreen manufactured specifically for people with albinism. All the examination and distribution data was entered directly onto the tablets and uploaded to the electronic database.

Using the app technology to photograph and assess a patient’s skin condition

At these clinics, a total of 309 patients were seen, 16 of whom were newly enrolled in the programme. A total of 20 patients were referred for minor surgery or advanced treatment at one of the country’s three major referral hospitals

Using the ipads and CommCare programme to record patient data in the skin clinics
Using the ipads to record patient information