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2022-12-31-accounts

Trustees’ Annual Report and Accounts

2022

Standing Voice Report of the Trustees 1st January 2022 - 31st December 2022

FOREWORD

I want to begin by thanking all of our partners, supporters, volunteers and staff teams for your unwavering commitment to Standing Voice this year. Due to your continued support and generosity our work has been able to go from strength to strength in 2022.

As the world continues to recover from the Covid-19 pandemic, and new global uncertainties appear, Standing Voice remains resolute in its mission to protect and empower people with albinism throughout Tanzania, Malawi and beyond.

During 2022 our income has seen positive growth from the previous year and our financial stability has made a strong recovery following the challenging period of the pandemic. As a result, this year we were able to expand our life saving work to new areas of Tanzania and Malawi. This included introducing new initiatives to support the most vulnerable and at-risk people with albinism in these countries.

This year we continued our focus of training frontline workers, civil society groups and human rights defenders so they are better prepared to respond to the needs of people with albinism. Our Skin Cancer Prevention Programme is now providing life saving dermatological healthcare and education to 8,076 people with albinism in 150 hospitals and health centres across Tanzania and Malawi. Meanwhile our Vision and Education Programme has also accelerated its expansion, with specialist eye care now accessible to 2,903 people with albinism in Tanzania.

To continue forging a future where children with albinism are free to realise their full potential, our team partnered with schools across Tanzania to deliver a teacher training programme. Through this programme 167 teachers were equipped with the skills and knowledge to meet the needs of students with albinism, while thousands of students and community members have been reached with awareness raising and education.

It’s a tragic reality that people with albinism and their families continue to be targeted with violent abuse throughout Tanzania and Malawi, with a spate of unimaginable human rights violations reported in the last few weeks alone. As well as applying pressure to governments to take action, and raising awareness of these atrocities internationally, we are working hard to provide direct support to survivors so they can recover from trauma and rebuild their lives. Our First Response Team is at the forefront of this support, providing emergency support and a package of tailored assistance to people with albinism who have been victims to abuse including; urgent physical and mental healthcare, housing and home security measures, micro-finance and livelihood support, access to justice and facilitation of ongoing psychosocial support and counselling. We are also partnering with community organisations such as the Mothers’ Albinism Action Group: a fierce collective of advocates who are providing peer counselling to other mothers, children and families across their communities in Tanzania.

Our devastation at the ongoing assault on the human rights of people with albinism is outweighed only by our determination to bring about positive change. We remain more committed than ever to building a world where the rights of people with albinism are universally upheld, and respected, and all forms of abuse against this group are ended.

Thank you to every single person and organisation who have contributed towards realising our objectives in 2022. Without you, our work would not be possible.

Presented by

Sabine Zetteler Chair of the Board of Trustees 28/01/2023

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Contents

1. Legal and Administrative Information

2. Report of the Trustees

2.1 Constitution

2.2 Board of Trustees

2.3 Advisory Board

2.4 Organisational Structure

2.5 Contribution of Volunteers

2.6 Our Purpose and Objectives

3. Principal Activities

4. Dermatology

4.1 Reach and Growth

4.2 Demographic Breakdown

4.3 Geographic Breakdown

4.4 Retention

4.5 Screening and Medical Management

4.6 Referral Management

4.7 Sun Protection Measures

4.8 Educational Resources

4.9 Community Knowledge

4.10 Stakeholder Training

5. Vision and Education

5.1 Key achievements

5.2 Impact on Education

5.3 Optometrist Training

6. Welfare and Social Protection

6.1 The Issue

6.2 Albinism Helpline

6.3 Advocacy and Access to Justice

6.4 Counselling and Emergency support

6.5 Livelihoods Training and Art Therapy

6.6 Human Rights Training

6.7 Women’s Albinism Action Group

7. Special Events

8. Data Management

9. Funding Matters

10. Governance and Risk

11. Accounts

11.1 Independent Examiner’s Report

11.2 Statement of Financial Activities (SoFA) 11.3 Balance Sheet

11.4 Basis of Preparation

Photo Credits: Chihiro Tagata Fujii (p.1, p.10, p.26, p.27, p.29, p.31), Mite Organisation (p.3), Andrea Zvadova (p.8, p.40) , Owen

Standing Voice Report of the Trustees 1st January 2022 - 31st December 2022

1. LEGAL AND ADMINISTRATIVE INFORMATION

Charity Name Standing Voice (UK)
No. 1151250
Charitable Incorporated Organisation (CIO)
Standing Voice UK
Unit 34b
Regent Studios
8 Andrews Road
London
E8 4QN
Standing Voice Tanzania
P.O. BOX 1902
Isamilo, Mwanza
Tanzania
Standing Voice Malawi
Area 14
Plot No.63
Lilongwe
49 Newick Road
London
E5 0RP
P.O. BOX 180
Ukerewe Island, Mwanza
Tanzania
Area 14
Plot No.63
Lilongwe
Sabine Zetteler (Chair)
Gurmeet Kaur (Treasurer)
Innocentia Magijima
Harry Freeland
Grace Malera
Tadala Peggy Chinkwezule
Jonathan Beale
Katwale Bunoge Magaga
Ally Possi
Sister Martha Mganga
Harry Freeland, Jonathan Beale
Sam Clarke, Emily Spence,
Kathrin Scholler, Giovanna Giuriolo,
Nofal Pasha. Supported by a growing
team of dedicated volunteers
Charity No.
_Administrative offces _
Registered Addresses
UK
Board of Trustees
Malawi
Board of Trustees
Tanzania Board of
Trustees
UK Administration

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Standing Voice Report of the Trustees 1st January 2022 - 31st December 2022

2. REPORT OF THE TRUSTEES

2.1 Constitution

Standing Voice (UK) was originally constituted under a Foundation Constitution that came into effect on 14th March 2013, on which date Standing Voice became registered as a Charitable Incorporated Organisation (CIO). The trustees are the only members of the CIO. If the CIO is wound up the members have no liability to contribute to its assets and no personal responsibility for settling its debts or liabilities.

2.2 Board of Trustees

Trustees are appointed by existing trustees through an electoral process. There may be no fewer than three trustees at any one time on the Board of Trustees. There are four at present, and we aim to expand the Board further during 2023.

Standing Voice trustees hold quarterly board meetings. The board also addresses governance matters as and when necessary, through e-mail or other means as necessary.

Decisions are made either at a meeting of the charity trustees, by resolution in writing or electronic form and agreed upon by all of the charity trustees. Agreements may comprise either a single document, or several documents containing the text of the resolution in like form to each of which one or more charity trustees has signified their agreement.

No decision shall be made at a trustee meeting unless a quorum is present at the time the decision is taken. The quorum is two charity trustees, or the number nearest to one third of the total number of charity trustees, whichever is greater, or such larger number as the charity trustees may decide from time to time.

In selecting trustees, consideration is given to the overall breadth of knowledge and experience required of the Board of Trustees. Candidates are typically interviewed by at least two existing trustees and nominations are then presented for approval to the board. Successful candidates, once appointed, receive appropriate documentation about the roles and responsibilities of being a Standing Voice trustee.

Standing Voice has three international boards: Standing Voice UK (4 members), Standing Voice Tanzania (4 members) and Standing Voice Malawi (3 members).

2.3 Advisory Board

The Standing Voice Board of Trustees is supported by an Advisory Board made up of 9 experts from 7 countries (Malawi, Tanzania, Togo, USA, UK, France and Ireland). This includes a wide range of expertise in the fields of public health, dermatology, ophthalmology, education, trauma recovery, genetics, general medicine and surgery, and in-depth knowledge on albinism.

The Advisory Board provides expert guidance to the UK Board of Trustees and staff management team, by advising on strategy, and informing the design and implementation of our programmes. The Advisory Board also works closely with Standing Voice’s wider staff teams, with a primary focus on developing resources and training manuals, leading the delivery of clinical and surgical training, conducting research and publication, and identifying funding opportunities.

Our warmest thanks go to our Advisory Board; Our current Chair of the Board Dr Andrew Sharp, and members; Professor Daudi Mavura, Dr Kelvin Maponda, Professor Melissa Levin, Dr Mark Wheeler, Professor Bayaki Saka, Dr Patricia Lund, Professor Charlotte Baker and Mark Fish.

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Standing Voice Report of the Trustees 1st January 2022 - 31st December 2022

2.4 Organisational Structure

The UK Board of Trustees manages the governance affairs of the charity on a voluntary basis and meets as necessary for this purpose, at least once a quarter. Standing Voice’s Malawi and Tanzania offices report to Standing Voice UK. Therefore, the UK Board has primary governance responsibility for all Standing Voice operations. UK Trustees represent a range of fields and expertise including international development, human rights, financial management, public relations, media and the arts.

The UK Executive Management team oversees all high level strategic decisions across Standing Voice’s offices. The UK Programmes and Financial Management Team ensures that all implementation is delivered in line with organisational strategy and to the requirements of Standing Voice’s funders, as well as internal and statutory financial regulations. Our UK Communications and Fundraising Team oversees the procurement of funding to sustain and grow our work, and ensure the charity maintains a high level of visibility around the world.

Our registered offices in Malawi and Tanzania are each governed by its own Board of Trustees which oversees all governance matters within the context of local standards, regulations and protocols. Standing Voice maintains a breadth of expertise on each of our local Boards which include human rights and employment lawyers, human rights advocates, management experts and representatives of National Human Rights Institutions. Staff team management in each of the Standing Voice country teams is handled by the Executive Director of the Malawi and Tanzania office respectively.

Harry Freeland is Executive Director of Standing Voice UK (since April 2014) and remains on the UK Board of Trustees. During the report period the charity had 6 paid staff members in the UK supported by a committed team of volunteers. Our global team comprises an additional 19 paid staff members based in Tanzania and 5 based in Malawi, as well as international consultants.

People with albinism and their families are key decision-makers embedded at every level of Standing Voice. As trustees and senior leaders across our UK, Tanzania and Malawi offices, people with albinism and their families are actively engaged in governance, programme design and fundraising, building and shaping a culture of accountability grounded in, and responsive to, the lived experience of our service users.

2.5 Contributions of Volunteers

Standing Voice continues to work closely with skilled volunteers from a variety of professional and academic backgrounds who are committed to ending human rights abuses against people with albinism.

Our programmes are supported by a pool of local and international expert volunteer researchers, professors, ophthalmologists, dermatologists, geneticists and performance artists who continue to complement the development and expansion of our work through the provision of research, resource development, training, and ongoing mentorship during the reporting period.

Our volunteer engagement has resulted in a unique pool of expertise on albinism supporting Standing Voice’s global operations. We have formalised this provision of expertise through the establishment of our advisory board, which plays a vital role in supporting our country Boards of Trustees and staff teams.

We are extremely grateful to all the volunteers who continued to inform and shape our life-saving programmes this year.

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Standing Voice Report of the Trustees 1st January 2022 - 31st December 2022

2.6 Our Purpose and Objectives

Standing Voice is an international NGO working in Tanzania and Malawi, with its headquarters in the United Kingdom. Standing Voice’s primary objective is to improve the quality of life of people with albinism in Africa.

The objectives of the CIO are:

I. the advancement of education; II. the advancement of mental and physical health and the saving of lives; III. the relief of poverty and the improvement of the conditions of life in socially and economically disadvantaged communities; IV. the promotion of human rights and the promotion of equality and diversity, in particular but without limitation so as to relieve the needs of people who are socially excluded by assisting them to integrate into society.

For the purposes of the above:

I. “human rights" means human rights as defined in the Universal Declaration of Human Rights and subsequent United Nations conventions and declarations and will be promoted in particular by education about human rights and promoting respect for human rights;

II. people who are "socially excluded" means people who are excluded from society, or parts of society, as a result of one or more of the following factors: financial hardship; youth or old age; ill health (physical or mental); disability or medical condition; discrimination on the grounds of sex, race, ethnic origin, religion, colour, creed or sexuality; poor education or skills attainment.

Standing Voice exists as a catalyst to amplify the voices of others. We aim to empower the people we work with to be the agents of change in their own lives, to build resilience and be healthy and self-sufficient. We currently focus on promoting the social inclusion of people with albinism in Tanzania and Malawi, whilst building the capacity of our partners in other countries in the region. Our team has over 17 years’ experience working with this group and has pioneered innovative models of working that have a proven record of replication and scalability.

People with albinism are commonly the victims of social exclusion in Sub-Saharan Africa, which has led to witchcraft-fuelled murder and marginalisation from health and education services. Our work with this group centres around several programmatic areas: Skin Cancer Prevention, Vision and Education, Trauma Recovery, Economic Empowerment and Advocacy. Through our core programmes our support is holistic and comprehensive to reflect the complex needs of people with albinism in their local context. We achieve our objectives by collaborating with a network of local stakeholders (such as government bodies, local community groups and NGOs). All of our initiatives promote the social inclusion of people with albinism by:

I. Advancing understanding and knowledge about albinism in wider society II. Advocating for progressive state action

III. Developing the skills and expertise of both people with albinism and wider community members IV. Increasing the positive impact of local service providers V. Promoting the positive impact of local non-governmental stakeholders (civil society)

The trustees of Standing Voice declare that they have had regard to both the Charity Commission guidance on public benefit and section 17(5) of the Charities Act 2011 on public benefit in carrying out their duties to achieve the charity’s objectives.

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3. PRINCIPAL ACTIVITIES

In 2022 we delivered programmes in Health, Education, Community development, Livelihoods and trauma recovery, reaching thousands of people with albinism across Tanzania and Malawi.

Through all these interventions we’re now reaching 8,817 people with albinism with essential services.

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4. SKN CANCER PREVENTION PROGRAMME

4.1 Reach and Growth

To confront the skin cancer crisis faced by people with albinism in Africa, Standing Voice launched its Skin Cancer Prevention Programme (SCPP). This growing network of dermatology clinics is reaching over 8,000 people with albinism throughout Tanzania and Malawi. Declared best practice by the United Nations in 2017, this programme is delivered in partnership with the Governments of Tanzania and Malawi, and is supported by hundreds of health professionals and civil society actors. Through the support of the Pierre Fabre Foundation we have been able to expand the SCPP at scale, transforming it into the largest skin cancer prevention programme for people with albinism existing in Africa today.

Each clinic provides health education, skin examination, cryotherapy, and referral for surgery if required. Patients also receive sunglasses, locally made sun hats and a fresh supply of sunscreen at every clinic. Our objective is to support governments and civil society to build national programmes of skin cancer prevention that reach every region and serve the total population of people with albinism.

During 2022 we have expanded the SCPP into 2 new regions of Tanzania and 5 new districts of Malawi. We conducted mapping exercises and engagement meetings with government and civil society to ensure the full mobilisation of people with albinism and their duty bearers in the delivery of the SCPP, and we have continued to deliver training to health professionals and community advocates, who lead the programme's expansion across both countries. We have seen significant growth in the number of patients enrolled across all programme areas, and we are on target for the SCPP to achieve national coverage of both Tanzania and Malawi by the end of 2027.

Tanzania Malawi
Indicator
Target Achieved Diference Target Achieved Diference
Number of regions/districts covered by SCPP 17 17 0 6 12 6
Number of clinics delivered during reporting period 170 203 33 60 84 24
Total number of patients registered in the database 4,590 6,270 1,680 1,200 1,806 606
Patients seen in this period 1,200 4,651 N/A 1,200 1,521 N/A
New patients seen in this period 540 1,337 797 300 847 547

By the end of 2022, the SCPP had exceeded or met all targets regarding patient reach and geographical coverage. The programme had registered 8,076 patients across Tanzania and Malawi, surpassing our combined target of 5,790 patients for both countries by a margin of 28.3%. This included 6,270 patients in Tanzania and 1,806 patients in Malawi.

17 regions of Tanzania were reached during this reporting period (meeting our target for the end of 2022), while 12 districts of Malawi were reached (surpassing our target of 7 districts). This means that today the SCPP is operational in 55% of all regions in Tanzania (17 of 31), and 43% coverage of all districts in Malawi (12 of 28). Clinics are now active in 150 Govt hospitals and health centres across both countries. 103 of these facilities are in Tanzania, and 47 are in Malawi. A total of 287 clinics were delivered across both countries during the reporting period. 203 of these were in Tanzania and 84 in Malawi. Since July 2021 and the start of the phase II partnership with the Foundation Pierre Fabre, 363 clinics have been delivered across Tanzania and Malawi.

Across the entire year we welcomed a total of 2,184 new patients across both countries, reflecting a combined annual growth rate of 27%. In Tanzania, there were 1,337 new patients registered in 2022 (a growth rate of 27.1% from 2021). In Malawi, we saw 847 new patients in 2022 (a growth rate of 88.3% from 2021). This fast rate of patient growth in Malawi was down to districts the SCPP operates in nearly doubling from 7 to 12.

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4.2 Demographic Breakdown

Tanzania Malawi
Number % Number %
Total registered patients 6,270 N/A 1,806 N/A
Female 3,198 51.1% 909 50.4%
Male 3,072 48.9% 897 49.6%
Average age 19 17
0-9 2,159 30.3% 639 30.4%
10-19 1,792 31.0% 548 32.3%
20-29 996 16.7% 304 18.0%
30-39 621 10.3% 169 10.4%
40-49 388 6.4% 87 4.6%
>50 309 5.3% 52 4.3%
Blank ages 5 0.1% 7 0.4%

We are encouraged to see continued gender parity in our patient population, with women and men respectively comprising 51.1% and 48.9% of our patients in Tanzania, and 50.4% and 49.6.% of our patients in Malawi. Younger age brackets continue to dominate our patient population in a manner that is consistent with the age distribution of the general population in both Tanzania and Malawi. In Tanzania, our average patient age is 19 and 63.0% of all registered patients are aged 19 or below; in Malawi, the average age is 17 and 65.7% of all registered patients are aged 19 or below. Across both countries 5,138 people (or 63.6%) of all registered patients are under the age of 19, and 79.7% of all registered patients are under the age of 30. Compared with 20.2% over 30, and just 4.5% over the age of 50. The population pyramids below demonstrate particularly strong mobilisation of patients aged 5-19 in both Tanzania and Malawi.

----- Start of picture text -----
4. The total number of patients disaggregated by age in this table currently do not match the number of registered patients. This is
because age is not known for a very small number of historical patients (as of today totalling 12). As these are now mandatory data fields,
historical patients returning to clinics are rapidly having their date of birth updated and the numbers will gradually align.
----- End of picture text -----

----- Start of picture text -----
10
----- End of picture text -----

The population pyramids below demonstrate particularly strong mobilisation of patients aged 5-19 in both Tanzania and Malawi.

Distribution of Registered Patients in Tanzania

----- Start of picture text -----
Male
0-4
5-9
10-14
15-19
20-24
25-29
30-34
35-39
40-44
45-49
50-54
55-59
60-64
65-69
70-74
75-79
80+
600 480 360 240 120 0 0 120 240 360 480 600
----- End of picture text -----

Distribution of Registered Patients in Malawi

----- Start of picture text -----
Male
0-4
5-9
10-14
15-19
20-24
25-29
30-34
35-39
40-44
45-49
50-54
55-59
60-64
65-69
70-74
75-79
80+
180 160 120 80 40 0 0 40 80 120 160 200
----- End of picture text -----

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4.3 Geographic Breakdown

Annually, we saw a 28.3% increase in registered male patients and a 26.0% increase in registered female patients in Tanzania. Our fastest-growing regions were Morogoro (92.7%), Dar es Salaam (50.2%) and Tanga (44.0%%), while our slowest-growing were Shinyanga (7.0%), Mara (7.1%), Kigoma (7.1%) and Mwanza (8.4%) which are also the regions where the SCPP has been operating longest.[1]

----- Start of picture text -----
Mwanza
Dar es Salaam
Shinyanga
Tanga Existing patients
Tabora New patients
Morogoro
Dodoma
Mara
Simiyu
Singida
Geita
Pwani
Kagera
Kigoma
Katavi
Manyara
Arusha
0 200 400 600 800
----- End of picture text -----

Annually, we saw a 90.0% increase in registered male patients and a 86.7% increase in registered female patients in Malawi. The fast rate of patient growth in Malawi was due to the number of districts the SCPP operates in almost doubling from 7 to 12. By far our fastest-growing district was Lilongwe (423.7%),[2] followed by Zomba (31.0%). Our longest running districts in Malawi; Salima (4.90%), Mangochi (8.1%) and Machinga (11.0%) saw the slowest patient growth.[3]

----- Start of picture text -----
Mangochi
Lilongwe
Machinga
Blantyre Existing patients
New patients
Mulanje
Zomba
Nkhotakota
Phalombe
Mchinji
Ntchisi
Salima
Balaka
Other
0 125 250 375 500
----- End of picture text -----

1. Growth is N/A for Pwani (which was entirely new region in 2022); and for Arusha, which has a small number of historic patients, but

remains a training ground for DVOs studying at the RDTC.

2. The SCPP launched in Lilongwe at the end of 2021, however the majority of clinic sites were opened during 2022 which resulted in substantial growth during the reporting period. For this reason it is counted as a new region in the Malawi growth maps on page 15. It is only possible to measure growth in registered patients for the 6 districts of Malawi where the SCPP was operating before and during this reporting period. Growth is N/A for Blantyre, Mulanje, Phalombe, Mchinji and Balaka (which were entirely new in 2022)

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The top map indicates the distributional density of our registered patients in Tanzania: Mwanza has the most patients (746) while Arusha has the fewest (33). The bottom map indicates regional growth rates in registered patients: Morogoro is growing quickest (92.7%), while Shinyanga is growing slowest (7.0%).

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The map on the left indicates the distributional density of our registered patients in Malawi: Mangochi has the most ~~patients (426) while Salima has the fewest (43). The map on the right indicates district growth rates in registered~~ patients: excluding Lilongwe[2] for the reasons explained in the footnote above, the quickest growth was in Zomba (31.2), while Salima is growing slowest (4.9%).

----- Start of picture text -----
Fewest Most Slowest Fastest
patients patients growth growth
14
----- End of picture text -----

4.4 Retention

In Tanzania, we saw 4,651 patients throughout 2022. Of these, 3,314 patients were returning within 12 months (representing an annual retention rate of 67.2%). In Malawi the picture was similar: in 2022 we saw 1,521 patients, of whom 674 were returning within 12 months (an annual retention rate of 70.3%). Across both countries in 2022 we saw 6,172 patients, of whom 3,988 were returning within 12 months (a combined annual retention rate of 67.7%).

Patient retention is a crucial indicator that helps us to measure the success of the SCPP in mobilising people with albinism and promoting their access to regular healthcare in order to prevent skin cancer. Retention is complex and can be challenging to guarantee (or even measure) for a number of reasons. Patient attendance can be undermined by a range of factors including:

Patients returning within 12 months Patients not returning within 12 months

----- Start of picture text -----
29.7%
32.8%
Tanzania Malawi
67.2%
70.3%
----- End of picture text -----

Although universal retention is virtually impossible, we work hard to maximise accessibility and retention by identifying and alleviating barriers to attendance where we can. Retention of patients attending clinics remained high in 2022. Our electronic database is helping us to monitor retention more accurately. This year we have been looking carefully at how retention varies by location, age and gender to identify those populations at greatest risk of dropping out, so we can invest additional resources in mobilisation among these groups. We have begun introducing specific questions in CommCare to help us understand the facilitators and obstacles that have an impact on the ability of patients to attend SCPP clinics.

During the reporting period we introduced direct SMS communications with patients. This has not only strengthened and further diversified the methods we use to mobilise patients to clinics, but it also allows for easier follow up with patients if they are demonstrating usual patterns of attendance, or if they’re high risk and require more careful tracking. For example we are able to identify patients who have not returned to clinics in 12 months or longer, and contact these individuals directly to understand the reasons for this dropout and encourage future attendance.

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4.5 Screening and Medical Management

Indicator Tanzania Tanzania Malawi Malawi Total Total
Total patients seen 4,651 1,521 6,172
Number of examinations 7,528 2,314 9,842
Number of cryotherapy procedures7 3,458 46% 1,829 79% 5,287
Number of patients receiving cryotherapy 986 21.2% 567 37.3% 1,553 19.2%
Number patients referred for surgical procedures 229 4.9% 118 7.8% 347 4.3%
Number of examinations where patients present with…
Severe erythema 99 1.3% 107 4.6% 206 2.0%
Moderate erythema 699 9.3% 695 30.0% 1,394 14.1%
Mild erythema 2,085 27.7% 1,724 74.5% 3,810 38.7%
Ectropion 150 2.0% 141 6.1% 291 3.0%
Multiple AKs 726 9.6% 479 20.7% 1,205 12.2%
Possible tumours 220 2.9% 97 4.2% 317 3.2%

There were 9,842 skin examinations conducted in 2022. 7,528 of these were in Tanzania and 2,314 were in Malawi. Clinical data from this reporting period reveals a higher prevalence of skin conditions among patients in Malawi than in Tanzania. As a proportion of the total number of examinations delivered in each country, Malawi scored much higher in cryotherapy use 79%, compared to 46% in Tanzania. In addition multiple Actinic keratosis were found during 20.7% of all examinations conducted in Malawi, compared with 9.6% in Tanzania. Rates of erythema (sunburn) were three times more prevalent in Malawi than Tanzania across each of our three indicators used to record the severity of erythema on each patient; severe, moderate and mild. This is a trend we’d expect to see with the comparatively longer history of the SCPP in Tanzania, which has led to a greater baseline awareness and understanding of skin cancer and preventative measures among people with albinism. Due to the rapid expansion of the SCPP in Malawi during 2022 we enrolled a large number of new patients who had never before accessed Dermatology services. This provides additional reasons for the higher

Prevalence of Clinical Conditions among Patients Seen (January – December 2022)

----- Start of picture text -----
100%
Tanzania
Malawi
10%
Severe Moderate Mild Ectropion Multiple Possible Cryotherapy
erythema erythema erythema actinic tumours
keratoses
----- End of picture text -----

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Provisional doctor’s diagnosis during clinics 2022
Indicator Tanzania Malawi
Possible tumours identifed during clinics 339 187
SCC 168 49.6% 112 59.9%
BCC 142 41.9% 49 26.2%
Other/unknown 29 8.5% 26 13.9%
Distribution of possible tumours by body part 339 187
Scalp 25 7.4% 16 8.6%
Face, ears, eyelids 162 47.9% 100 53.5%
Neck 37 10.9% 24 12.8%
Trunk 30 8.8% 15 8.0%
Back and shoulders 43 12.7% 19 10.1%
Upper limbs 31 9.1% 7 3.7%
Lower limbs 11 3.2% 6 3.2%

A total of 526 possible tumours were provisionally diagnosed during SCPP clinics. In Tanzania, doctors identified 339 possible tumours in 229 patients. 49.6% of tumours were identified as SCCs (down from 57.6% in 2021), 41.9% as BCCs (up from 37.4% in 2021), and 8.5% as other or unknown conditions (up from 5% in 2021). In Malawi, doctors found 187 possible tumours in 118 patients, with 59.9% diagnosed as SCCs (up from 22.0% in 2021), 26.2% as BCC (down from 51.2% in 2021), and 13.9% as other or unknown (down from 26.8% in 2021).

Distribution of tumours identified on body parts was similar in both countries. The body parts most affected in patients in both Tanzania and Malawi was the face, ears and eyelids, with 47.9% in Tanzania and 53.5% of all tumours identified being found on these three areas of the body.

Distribution of tumours by body parts

----- Start of picture text -----
3%
3%
7.4% 3.7% 8.6%
9.1%
10.1%
12.7%
8.0%
Tanzania Malawi
339 tumours 187 tumours
8.8%
47.9% 12.8%
53.5%
10.9%
Scalp
Face, ears, eyelids
Neck
Trunk
Back and Shoulders
Upper limbs
Lower limbs
----- End of picture text -----

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4.6 Referral Management

From January to December 2022, 347 patients were referred for further treatment by dermatologists at SCPP clinics. This included 229 patients in Tanzania and 118 patients in Malawi.

Patient Referral Status Patient Referral Status Patient Referral Status 2022
Indicator Tanzania Malawi Total
Total number of patients referred for surgery 229 118 347
Completed treatment 173 75.5% 83 70.4% 256 73.8%
Active treatment 41 17.9% 27 22.9% 68 19.6%
Awaiting treatment 7 3.1% 4 3.4% 11 3.2%
Refused treatment 3 1.3% 1 0.8% 4 1.2%
Undergoing palliative care 4 1.7% 9 7.6% 13 3.7%
Passed away 5 2.2% 3 2.5% 8 2.3%

Encouragingly, the majority of referred patients have completed their treatment (75.5% in Tanzania and 70.4% in Malawi). Some patients are still in active treatment[4] (17.9% in Tanzania and 22.9% in Malawi), while 3.1% and 3.4% of patients respectively are awaiting treatment.

A small minority of patients have refused treatment due to a number of factors. Patients sometimes refuse treatment in fear, or because of financial or logistical obstacles involved in leaving their homes, jobs or families and travelling to receive treatment.

Patient referral status 2022

----- Start of picture text -----
2.2% 2.5%
1.3% 0.8%
3.1% 3.4%
17.9%
22.9%
Tanzania Malawi
70.4%
75.5%
Active treatment Completed treatment Awaiting treatment
Refused treatment Passed away
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active treatment.

4.Patients undergoing palliative care are not included in the pie chart on page 20, and are instead counted within total patients who are in

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Referral Results Referral Results Referral Results
Indicator Tanzania Malawi Total
Patients for whom histology results are available 186 86 272
Confrmed diagnoses5 201 96 297
SCC 89 44.3% 37 38.5% 126 42.4%
BCC 83 41.3% 43 44.8% 126 42.4%
Other e.g. ulcers, benign lesions, warts, cysts etc. 29 14.4% 16 16.7% 45 15.2%

During 2022 we received the histology results of 201 biopsies in Tanzania and 96 biopsies in Malawi. In Tanzania, 44.3% of results were confirmed as SCCs, 41.3% as BCCs, and 14.4% were other conditions, benign or non-cancerous. In Malawi, 38.5% of results were confirmed as SCC, 44.8% as BCC, and 16.7% were other conditions.

In new locations the SCPP continues to see patients with advanced tumours. At the end of 2022 4 patients in Tanzania and 9 patients in Malawi were receiving palliative care support. Sadly 8 patients passed away from skin cancer during the reporting period (5 in Tanzania and 3 in Malawi).

5. Patients often present with multiple lesions and as a result will have multiple biopsies taken. This is why the number of confirmed diagnoses is greater than the number patients with histology results available

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Percentage of all registered patients referred for skin cancer surgery since 2017

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20%
Tanzania
Malawi
16%
12%
8%
4%
0%
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Patient referred for surgical procedures since 2017

11.8% of all registered patients in Tanzania and 18.5% of all registered patients in Malawi have been referred for skin cancer surgery and other treatments since 2017. These are high percentages that demonstrate the scale of the Skin Cancer crises facing people with albinism in Africa, Particular in Malawi where the programme has been operating for a shorter timeframe.

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4.7 Sun Protection Measures

Indicator Tanzania Tanzania Malawi Malawi Total
S2 2021 2022 S2 2021 2022
Number of jars of sunscreen distributed 8,894 14,816 1,722 12,300 37,732
Number of patients receiving sunscreen 3,269 4,651 661 1,521 10,102
Number of sunglasses distributed 0 3,795 15 269 3,254
Number of hats produced locally 4,381 7,458 N/A N/A 11,839
Number of hats distributed 3,269 7,290 238 1,431 12,236
Number of umbrellas distributed 192 505 0 29 726

During 2022 the SCPP distributed thousands of sun-protective items across Tanzania and Malawi. In Tanzania this included 14,816 pots of sunscreen, 7,290 wide-brimmed hats, 505 umbrellas and 3,795 n. In Malawi this included 12,300 pots of sunscreen, 1,431 wide brimmed hats, 29 umbrellas, and 1,521 UV protective sunglasses.

Since the start of the phase II project in July 2021, a combined total of 65,787 sun protective items have been distributed across Tanzania and Malawi. This includes 11,839 wide brimmed hats which were manufactured locally by tailors with albinism at the Umoja Training Centre in Tanzania, and distributed free through the SCPP. Additionally during 2022 we began exporting and distributing these hats in Malawi for the first time.

~~hats have been distributed through the SC~~ PP since July 2021

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4.8 Educational resources

The SCPP provides an important avenue for the dissemination of specialist educational resources. Standing Voice has developed a wide range of booklets, films, and pop-up theatre performances to train and educate patients, communities and service providers. During 2022 we printed 13,450 education resources in the form of brochures, booklets and manuals which were distributed across all programme areas to people with albinism, their families and service providers. 11,350 of these were for distribution in Tanzania and 1,300 in Malawi. Whilst 800 were for distribution in other African countries.

To support capacity building for health professionals, we continued to distribute and utilise the ‘ manual of best practice in dermatological care for patients with albinism’ during the delivery of training

Total educational resources printed: 13,450

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9,000
Educational Resources
Tz Mw Other Total
printed
Understanding Albinism
Booklet [9,000] 1,000 0 10,000
Moon Shining Bright
Picture Book [2,000] 200 0 2,200
Educational Resources
Teacher training booklet 250 0 0 250
printed in 2022
Manual of best practice 100 100 800 1,000
Total 11,350 1,300 800 13,450
Understanding Albinism Booklet
1,000 Moon Shining Bright booklet
Teachers' Booklet
250 2,200 Manual of Best practice
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Throughout 2022 these resources were disseminated through dermatology and vision clinics, counselling sessions, training events, and directly in schools. They included:

.

. In 2022 we also introduced screenings of educational films about albinism and human rights in waiting areas at Vision clinics. These films included an animated adaptation of children’s story book Moon, Shining Bright! – developed by our partner Inside the Same, which won the 2021 Watoto International Film Festival in Zanzibar – as well as Jikubali, a documentary funded by the Swedish Institute Creative Force and co-produced by Standing Voice, the Tanzania Albinism Society, and Imagine What We Can Do.

. By sensitising patients and their duty bearers to understand and address the challenges arising from life with albinism in Tanzania and Malawi, these written and visual resources play a critical role in enabling thousands of people with albinism to take charge of their health and claim their rights.

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4.9 Community Knowledge

Indicator Tanzania Malawi
Total
Number of awareness sessions 386 141
527
Number of patients and their relatives present at awareness sessions 18,047 5,467
23,514
Number of communication tool(s) used for the general public 4 3
7
Number of communication tools printed 11,350 1,300
12,650
Number of communication tool(s) distributed in the form of a brochure
11,168
1,223
12,531
Number of community advocate training events
4
3
7
Number of ‘community advocates’ trained
53
44
97

During the last 12 months the SCPP delivered 527 health awareness sessions across Tanzania and Malawi, to an audience of 23,514 people, including patients, their friends, families, teachers and community representatives. In Tanzania, 386 sessions were delivered to an audience of 18,047 people, with an average of 1.9 awareness sessions per clinic. In Malawi, we delivered 141 sessions to an audience of 5,467 people, with an average of 1.7 sessions per clinic. We also distributed a total of 11,268 and 1,263 education brochures to people with albinism and their families in Tanzania and Malawi respectively.

We delivered Community Advocate Training in 5 new districts in Malawi and 3 regions of Tanzania. These focused on training for Health Surveillance Assistants, Social Welfare Officers and District Committee members of Albinism Associations to protect and advocate for the welfare of people with albinism in between clinic cycles. Across both countries 97 people were trained this year.

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4.10 Stakeholder Training

As well as providing health education for patients and families, the SCPP promotes systemic change in Tanzania and Malawi by strengthening the ability of health workers to prevent and treat skin cancer in people with albinism.

During 2022 we delivered 10 stakeholders engagement workshops. Each workshop took place prior to launching new SCPP clinical services in new districts of each country. These workshops are designed to introduce the SCPP to relevant stakeholders, map hospitals, health centres and patient populations, so we can identify optimal clinic locations prior to launching the SCPP. The workshops also include sessions on understanding albinism, importance of health education, clinic set-up, data collection and referral management for different stakeholder groups. Across all these events we trained 54 stakeholders in Tanzania and 84 new stakeholders in Malawi. Participants attending ranged from Regional Administrative Secretaries, District Medical Officers, District Social Welfare Officers, Special Education Officers, Medical Officers in-charge, and district and regional representatives of the Tanzania Albinism Association Society (TAS) and Association of Persons with Albinism in Malawi (APAM).

This year we delivered training to 188 health personnel. 75 of these were in Tanzania and 113 in Malawi. Trainees included Dermatology Officers, Clinical Officers, Medical Assistants, nurses and Health surveillance Assistants. Training in both countries consisted of 1 or 2 theoretical classroom-based training days, and an additional 3-5 practical clinic based training days for Dermatology Officers.

In December, as part of our clinical training we delivered a week-long Surgical Camp in Malawi. Training was led by experienced Irish Plastic Surgeon Dr Patricia Eadie and Standing Voice Advisory Board member and GP Dermatologist Dr Mark Wheeler, and was assisted by Dr Esther Mzumara from Kamuzu Central Hospital in Lilongwe. The event trained 15 trainees, which included surgeons and dermatology officers. In addition 21 patients with albinism received skin cancer surgery, and 6 patients were provided with palliative support and counselling. The Surgical Camp was also supported by 13 hospital support staff from Nkhoma Mission Hospital (including nurses, theatre and ward staff), and 6 staff from Standing Voice Malawi.

According to Patrick Bango a Dermato-Venereology Officer from Mulanje District:

“ I was privileged to be one those selected to be part of the Nkhoma Surgical Camp. The live video feed was very helpful because it meant the theatre room wasn’t congested, and at the same time, clinicians were able to follow each procedure that was happening in the theatre. When we were not operating ourselves, the live video helped us to see how more complex lesions were being excised”.

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The table below shows the large number of actors working across the programme. Today there are 1,496 people involved in delivering the SCPP.

By the end of 2027 we aim to have trained and mobilised over 2,500 frontline workers to lead the delivery of this programme.

SCPP stakeholders Tanzania
Malawi
Total
Dermatologists and Dermatology Ofcers 29
20
49
Albinism Association leaders 270
121
391
Social Welfare Ofcers & Health Surveillance Assistants 153
96
249
Other health personnel: Clinicians, Medical Assistants, Nurses, Surgeons,
Histopathologists
199
138
337
Regional & District Medical Ofcers 102
14
116
First responders / counsellors 22
8
30
Optometrists 14
-
14
Special Education Ofcers (Regional & District) 104
-
104
Teachers 167
-
167
Tailors 17
-
17
Pharmacists 8
14
22
Total 1,085
411
1,496

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5. VISION AND EDUCATION PROGRAMME

People with albinism are visually impaired as a result of their melanin deficiency. Untreated, visual impairment can undermine educational outcomes and restrict professional opportunities for people with albinism in Africa, damaging their economic security and forcing many into outdoor labour as subsistence farmers, where the risk of skin cancer is high. In Tanzania and Malawi, limited affordability and availability of specialist optometry services together with systemic discrimination mean most people with albinism do not access the vision care and education they need. Most teachers are also not trained to understand or manage the visual impairment of students with albinism in school.

Since 2014, Standing Voice has been delivering a clinical programme of care, education, and training to improve the vision of people with albinism and strengthen the skills of optometrists and teachers to better cater for their needs. Focusing mainly on students, the programme delivers a network of eye-clinics that provide specialist low vision examinations and assistive devices including monocular telescopes, prescription glasses, Sunglasses, health education and resources.

The Vision Programme is conducted in partnership with the Government of Tanzania and a range of civil society actors. As of Dec 31st 2022, there were 2,903 patients registered in the Vision Programme across 9 regions of Tanzania, while the programme will expand to Malawi for the first time in 2023.

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5.1 Key Achievements in 2022

Total people with albinism supported:

1,851

The Vision Programme delivered five large-scale eye clinics in 2022, serving 1,851 people with albinism. Patients were mobilised from across eight regions in Tanzania including - Mwanza, Arusha, Dar es Salaam, Dodoma, Tabora, Shinyanga, Kilimanjaro and Pwani. All patients received a one-to-one consultation and eye examination from a trained optometrist, education on albinism and visual impairment, and resources and devices to support their management of low vision in daily life.

Total assistive vision devices distributed: 7,725

Throughout 2022, we distributed 7,725 assistive devices including 1,235 pairs of prescription glasses, 3,795 pairs of sunglasses, 1,478 monocular telescopes, 1,195 glasses cases and 22 dome magnifiers.

Teachers trained: 167

Throughout 2022, the Standing Voice Team delivered specialist training on albinism and inclusive education for 167 teachers across 15 schools in Tanzania. In each of these schools, our staff conducted ‘barazas’ and parades to build knowledge of albinism across the student body. We estimate that 4,500 pupils and a further 9,000 family and community members of these students were reached across these engagements.

Students reached through Hero Visits: 4,500

In addition to eye clinics, we were delighted to introduce a new component of the Vision Programme in 2022. In partnership with 15 schools, we coordinated a series of Albinism Hero Visits whereby inspirational figures with albinism were invited to schools to deliver special talks to engage students and promote positive messages around albinism and personal achievement. Conducted in parallel with our main clinical programme, this series of events delivered one-to-one support for 87 students with albinism while delivering wider sensitisation to 4,500 students across the target schools.

Please see the 2022 Annual Vision Programme Report for a detailed update of the programmes impact this year.

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5.2 Impact on Education

5.2.i TEACHER TRAINING

As well as providing direct clinical care, the Vision Programme aims to achieve systemic change in Tanzania by strengthening the capacity of teachers to understand and mitigate the effects of visual impairment on the education of students with albinism. This is critical for enabling the next generation of people with albinism to reach their educational and professional potential, breaking the long-term cycle of stigma.

Teachers Trained in 2022
Male
Female
Total
Primary 48
33
81
Secondary 64
22
86
Total 112
55
167
Teachers Trained
51.5%
48.5%
Primary
Secondary
Teachers Trained
32.9%
67.1%
Male
Female

Throughout 2022, Standing Voice partnered with 15 schools across four regions of Tanzania to provide specialist training for 167 teachers.[7] Tasked with monitoring and promoting the welfare of students with albinism, these teachers act as Vision Ambassadors who create a culture of respect, solidarity and mutual accountability in safeguarding the rights of these students in their schools; they also function as an important referral link with the main clinical service, reporting to Standing Voice on students’ ongoing vision needs and ensuring the correct use and maintenance of prescribed assistive devices. This reciprocity between teacher training and clinical care is strengthened by the increasingly prominent role of optometrists, who travel to schools with the Standing Voice Team to support the delivery of teacher training and provide follow-up care to students in the wake of our main clinical service.

In partnership with Standing Voice, Vision Ambassadors and senior leaders across these 15 schools have developed and implemented tailored action plans to improve the educational participation and welfare of students with albinism. Remedial measures have included:

7. Despite the roughly equivalent proportions of primary and secondary teachers trained, we acknowledge the unfortunate gender disparity among trainees, the majority of whom were male (particularly in secondary schools). We always endeavour to achieve gender parity in the mobilisation of trainees, and moving forward will look to reach greater numbers of female teachers in these schools where they are available and willing to participate.

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Through the implementation of these measures and promotion of greater understanding of the rights and needs of people with albinism across these 15 schools, we estimate that 4,500 students and an additional 9,000 family members have been sensitised. Focus group discussions have moreover revealed a broad improvement in the self-reported educational welfare and attainment of students with albinism, while Likert-scale surveys have shown growth in teachers’ understanding of albinism as well as their confidence in responding to the needs of students with albinism. Key findings have also been disseminated to a range of stakeholders in Tanzania across the health and education sectors, civil society, media and local and national government, establishing a crosssectoral dialogue around the needs of students with albinism and helping to embed these lessons in contemporary teaching practice.

Teacher Testimonials

“Many students are now encouraged to wear long-sleeved clothing, whereas previously most of us teachers were not aware of the risks of UV radiation and the skin cancer situation for these students.”

“I have shared my knowledge on albinism and low vision with the entire student community. This is an impact from the Standing Voice training program for teachers and I have enjoyed imparting this knowledge.”

“I have learnt how important it is to listen to students with albinism. We can then understand their needs and find ways of helping them to excel in their academic goals.”

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5.2.iii HERO VISITS

To complement teacher training and expand our engagement with schools, Standing Voice has recently introduced Hero Visits as a new component of the Vision Programme. These celebratory events provide an opportunity for inspirational figures with albinism to visit schools with our team and deliver talks for students with albinism and the wider school community. Alongside these inspirational talks, we run talent competitions with prizes, interactive seminars, book readings, and film screenings.

87 students with albinism enjoyed one-to-one interaction with visiting heroes in 2022, although the wider assemblies are estimated to have reached 4,500 students in total.

2022 Heroes

Judith Mpita, a teacher with albinism and graduate of Education in Special Needs from the University of Dodoma:

“ I was so excited to talk to students about [...] my educational path and life journey. I talked about various academic and social challenges that I went through, and shared the different techniques that I used to overcome those challenges. I believe that the inspiration will be fruitful, because I showed them the ups and downs that they might face on their educational journeys. I did not forget to mention how important it is that they always remain confident (with no fear) when searching for the solutions towards the challenges they face. I strongly believe that students with albinism have a bright future ahead of them and I thank Standing Voice for offering me the opportunity to inspire them. ”

Bryson Yohana Mwayinga, gospel artist with albinism and Season 12 winner of Tanzanian TV talent show Bongo Star Search:

“ In my inspirational talks, I specifically insisted that “disability can happen to anybody at any moment” completely out of the blue. Therefore we should never let our disability affect our passion. I spoke about the hard work that made me become a successful winner of the 2022 National talent show. Without this [hard work] my talent could have gone wasted. I had the passion to explore. I encouraged students to always remain passionate and focused to pursue their professional and personal ambitions, despite the challenges they will face along the way. Many thanks to Standing Voice and I hope we can expand these talks to many other schools to achieve the widest possible impact. ”

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“I’m so proud of the work we are doing at Standing Voice to train more optometrists as experts in low vision management. Together we are bringing transformational eye care to thousands of people with albinism, giving patients the tools and knowledge they need to excel in life.”

Dr Abdi Nyembo, Head Programme Optometrist and trainer

5.3 Training of Optometrists

To strengthen access to eye care for people with albinism in Tanzania, Standing Voice partners with the Tanzania Optometric Association, the Kilimanjaro Christian Medical Centre School of Optometry and a network of international experts to train optometrists in the diagnosis and treatment of low vision in this population. There are currently 9 optometrists actively working within the Vision Programme, while 14 in have been trained to date.

As part of this ongoing initiative, we held a dedicated optometry training workshop in Dar es Salaam in October. The first day of training was classroom-based, reviewing core theory on the complex vision needs of people with albinism, including refractive, prescribing and dispensing strategies, and how to deliver specialised vision screening. The days that followed allowed optometrists to practise their newly honed skills in a clinical environment, using our electronic patient management system CommCare and working directly with patients.

We are grateful for the tenacity and leadership of Dr Abdi Nyembo, an optometrist and tutor at the Kilimanjaro School of Optometry, who oversees the delivery of patient care and optometric training. We express thanks also to Dr Rebecca Kammer, a world-leading expert in the low vision of people with albinism and long-term strategic advisor in the Vision Programme; and to Professor Susan Primo, the Director of Optometry and Vision Rehabilitation Services at the Emory Eye Center and Professor of Ophthalmology at the Emory University School of Medicine, who attended the latest workshop as a visiting specialist and will continue to provide support to clinical development of the Vision Programme moving forward.

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6. WELFARE AND SOCIAL PROTECTION PROGRAMME

6.1 The Issue

People with albinism are a violently persecuted minority in many African countries. Stigmatised for their unique appearance, many people with albinism are denied opportunities, excluded from services and subjected to damaging myths and misconceptions. In the worst cases, people with albinism are abducted, mutilated, raped and murdered: all because of the colour of their skin. Tanzania and Malawi have been the continental epicentres of these atrocities; together, these two countries account for half of all human rights violations reported against people with albinism across the continent since 2006. The last 6 months of 2022 have seen a tragic resurgence of violence in both countries, with a string of attempted abductions, attacks and killings sending shockwaves through the albinism community. In December 2022, we shared the breaking news of the mutilation and murder of a three-year-old girl with albinism in the Kasungu district of central Malawi, who was asleep in bed with her grandmother when an unidentified assailant broke into the house, stabbing the young girl and amputating her arm.

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815 human rights violations
reported against people with
albinism in Africa
since 2006
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MALAWI

207 human rights violations

reported against people with albinism since 2006

Most recent killings:

Malawi, 30th November 2022 3-year-old girl with albinism attacked and killed in Kasungu, central Malawi

Tanzania, 2nd November 2022 49-year-old man with albinism mutilated and murdered in Mwanza, northern Tanzania

TANZANIA

205 human rights violations reported against people with albinism since 2006

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Alongside the ever-present threat of violent abuse and entrenched discrimination the majority of people with albinism we work with in Tanzania and Malawi face additional challenges to access education, housing, financial security, justice and political representation. Many are survivors of trauma and require specialised support to navigate this range of challenges.

Operating throughout Tanzania and Malawi, the Standing Voice First Response Team works on the front line to identify, intercept and rectify cases of abuse or discrimination against people with albinism and their families. Comprising local Standing Voice staff, social welfare professionals and individuals with first-hand experience of albinism-related stigma, the First Response Team has spent the last three years undergoing a programme of training with Dr Mark Fish, a world-leading expert in trauma recovery and a member of the Standing Voice Advisory Board. The First Response Team is a lifeline for the most vulnerable individuals supported by Standing Voice. Its key pillars of interventions in 2022 included:

6.2 Albinism Helpline

Indicator Tanzania Malawi
Regions where people with albinism have access to a helpline 17 12
Calls received through helpline 1,575 474
Calls categorised as urgent N/A 64

In 2022 we continued to develop and operate a dedicated emergency helpline for people with albinism and their families to report incidents of abuse and share any concerns about their health, welfare or security. The team assesses callers’ needs and determines the appropriate course of action, such as over-the-phone advice, referral to an existing Standing Voice programme or to a specialist partner, or alerting of law enforcement in cases where an imminent threat is identified.

Since its establishment in 2021, our helplines have received 1,575 calls in Tanzania and 474 calls in Malawi. The helpline is advertised in all districts and regions where the Skin Cancer Prevention Programme operates. The most common reasons for contacting the helpline are reports of abuse, actual or anticipated threats to security (such as attacks), urgent medical care, emotional support, access to education, food and economic security. In Tanzania, a large proportion of calls relate to the management of skin cancer referrals.

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6.3 Advocacy and Access to Justice

Protecting people with albinism from discrimination and violence means raising awareness, building understanding, and creating a climate where their rights are recognised and respected at local, national and global levels.

In 2022 Standing Voice worked with communities throughout Tanzania and Malawi to challenge harmful myths and misconceptions about albinism and strengthen security for people with albinism through the delivery of training to society and building of albinism advocate support network to improve social inclusion and reporting of abuses. We engage a broad spectrum of partners to deliver awareness-raising events, including seminars, assemblies, workshops, parades, celebrations, film screenings, installations, exhibitions and interactive community-based theatre, comedy and music.

Standing Voice continues to push beyond national boundaries to generate global accountability for the welfare of people with albinism in Africa. Through our special consultative status with the Social and Economic Council of the United Nations, we are an active contributor to advocacy on albinism throughout the UN system: sharing reports of human rights abuses, issuing recommendations based on our data, and collaborating with the mandate of the Independent Expert on Albinism appointed by the United Nations. We have called for greater international action on this issue and elevated the global profile of albinism in Africa through a series of highprofile films, including our founding documentary In the Shadow of the Sun and the acclaimed BBC production Born Too White .

Standing Voice also works directly with survivors of witchcraft-related atrocity to facilitate access to justice. In June 2022, Executive Director of Standing Voice Malawi, Bonface Massah, spoke live with Al Jazeera following the announcement of life sentences for convicted perpetrators in the 2018 murder of a man with albinism called Macdonald Masambuka: a case in which a Catholic priest, clinician and police officer were convicted for human trafficking and possession of the victim’s remains and a former presidential advisor was implicated but never charged. Our team was key in raising awareness to maintain the high public profile of this case and generate sufficient pressure for justice to finally be delivered.

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6.4 Counselling and Emergency Support

Indicator Tanzania Malawi
Regions where people with albinism have access to counselling at clinics 1 3
People with albinism with access to counselling service at clinics 290 285
People counselled through peer-to-peer counselling at clinics 51 23
Number of clinics with Counselling delivered 9 8

During 2022 peer-to-peer counselling was introduced at a number of Dermatology clinics throughout Tanzania and Malawi, providing safe and confidential spaces for patients to speak freely about their needs and concerns, process trauma, build confidence and access referral for specialist services where required. By the end of 2022, counselling was accessible to 290 people with albinism across one region of Tanzania and a further 285 people with albinism across three districts of Malawi. 74 individuals received counselling during this period, across a total of 17 clinics. 80% of all people visiting counselling stations in Tanzania were women, and 40% were mothers.

For the most vulnerable people with albinism – many of whom carry acute psychological trauma and have survived witchcraft-related atrocities – our First Response Team provides a package of emergency support. This can include relocation to safe-housing, home security improvements; livelihood and food security support; urgent medical intervention; psychosocial, dermatological and palliative healthcare; facilitation of trauma recovery or family reconciliation; and direct advocacy interventions in situations of risk, conflict or exclusion.

In Malawi, through a project funded by the United Nations Voluntary Fund for Victims of Torture, Standing Voice is delivering this full package of support measures to 11 people with albinism who have survived attack, and 21 of their family members. In Tanzania, 26 people with albinism are currently accessing ongoing emergency tailored support packages that include counselling, group therapy and security urgent measures.

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➡ 1 in 3 survivors we support in Malawi is aged 5-10, while 2 in 3 are below the age of 20
➡ 9 of the 11 highest-risk survivors we support in Malawi are female
➡ Many survivors report that before the SCPP they had no way of accessing healthcare
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6.5 Livelihoods Training and Art Therapy

Indicator Tanzania People with albinism receiving ongoing skills development or income generation support 56 Community members benefitting from the Umoja Training Centre (UTC), e.g. training, water collection, library services, English glasses, community events, businesses renting space, etc.[7,585] Number of school children reached by the UTC 29 UTC tailors trained 17 Hats produced by UTC tailors 11,839

In 2014, Standing Voice founded and constructed the Umoja Training Centre (UTC): a facility providing formal training initiatives to promote integration and shared prosperity for people with albinism and their peers and families across Tanzania’s Lake Zone. Home to the Ukerewe Albinism Society and a growing number of community groups, the UTC is a hub of business activity, skills development, and therapeutic rehabilitation for survivors of discrimination and violence. The centre provides a second chance for people with albinism who may have missed out on the opportunity of formal education while growing up. With English language classes and the only library on Ukerewe Island, the UTC maintains an extensive programme of school outreach and is an important resource for raising awareness of albinism and strengthening education locally.

In 2022, the UTC continued to support the capacity development of a range of community groups and 56 individual trainees. Disciplines included tailoring, soap-making, batik, photography, radio production, music, and the performing and visual arts. In particular, through the support of the Foundation Pierre Fabre, we have been able to continue to nurture the development of UTC tailors, who to date have manufactured 11,839 widebrimmed hats for distribution to people with albinism through a network of 150 hospitals and health centres engaged in the Skin Cancer Prevention Programme across Tanzania and Malawi.

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6.6 Human Rights Training

A key objective of our welfare work is to strengthen the capacity of key duty bearers to recognise, monitor and protect the human rights of people with albinism in Tanzania and Malawi. Through workshops, seminars and public engagement, we are building a network of albinism ambassadors encompassing a range of stakeholder groups: the family and community members of people with albinism, health and welfare professionals, teachers, local government representatives, members of law enforcement and the judiciary, representatives of government ministries and national human rights institutes, media professionals, religious and traditional leaders and albinism association representatives.

People with albinism and family members participating in rights-based training: 6,349

Operating through dermatology clinics, the First Response Team delivers human rights training to thousands of people with albinism and their families and caregivers. The team leads educational seminars and distributes resources to build understanding of albinism and human rights and raise awareness of best practices for protecting and empowering families impacted by albinism.

By the end of 2022, 6,349 people had received this right-based training at clinics in Tanzania. This activity will be formally introduced in Malawi for the first time in 2023.

Albinism Advocates trained: 8

In Malawi, we have partnered with the United Nations Voluntary Fund for Victims of Torture to train a network of Albinism Advocates who can monitor and support the most at-risk people with albinism at the community level. These advocates include albinism society leaders, Health Surveillance Assistants and Social Welfare Officers, many of whom are already engaged in the SCPP and play a critical role in the mobilisation and retention of patients.

By the end of 2022, eight Albinism Advocates had been trained in group therapy and active listening in Malawi, participating in a series of workshops led by international trauma recovery expert Dr Mark Fish and Dr Rim Ismail. This training has equipped these individuals to provide ongoing psychosocial support to people with albinism, tracking any developments in their wider needs and communicating these to the First Response Team.

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6.7 Women’s Albinism Action Group

Women with albinism and mothers of children with albinism face intersectional discrimination and are often uniquely vulnerable to poverty and violence. In Tanzania and Malawi, the myth that intercourse with a woman with albinism can cure infertility and AIDS places this population at disproportionate risk of sexual violence and contraction of HIV. Mothers of babies with albinism are often blamed when a baby with albinism is born, abandoned by their husbands and families and left with sole responsibility for the health, education and physical and economic security of their child. The abandonment of many mothers by their partners also restricts the ability of these women to participate in income-generating activities, further jeopardising the health and security of both mother and child.

Established in 2015 with the support of Standing Voice, the Women’s Albinism Action Group (WAAG) is now a registered community-based organisation run by and for mothers impacted by albinism based at the Umoja Training Centre in Tanzania. The group began as an informal collective, meeting to share their experiences and reflect on their challenges as women with albinism or mothers of children with albinism. Over time, bonds of trust and solidarity were strengthened and the group now meets regularly to provide peer support and conduct community advocacy. The group works with Standing Voice and the Tanzania Albinism Society to identify and counsel any new mothers of babies with albinism, travelling to communities where stigma is rife to raise awareness of albinism and advocate for the safety and inclusion of all families impacted by the condition.

By the end of 2022, 18 members of the Ukerewe Women’s Albinism Action Group had received specialist training on albinism and peer support. In turn, these women have delivered 5 training seminars on albinism for key welfare professionals, undertaken 15 additional engagements at schools and health centres, and delivered a programme of 38 community outreach events to sensitise a wider audience of 8,355 people in total. WAAG members have also provided training on albinism and sun protection techniques for 84 mothers impacted by albinism on Ukerewe Island. In addition to the main Standing Voice helpline, the WAAG also operates its own dedicated helpline and has supported 469 callers to date.

7. SPECIAL EVENTS

In 2022 we have been very active in advocating for the rights and needs of people with albinism, both at local and international levels.

In June to mark International Albinism Awareness Day we held special events across Tanzania, Malawi and the UK.We also teamed up with the United Nations to host a special screening of BBC documentary In the Shadow of the Sun . The film was accompanied by a Q&A with Standing Voice UK Executive Director Harry Freeland, SV Malawi Executive Director Bonface Massah and United Nations Independent Expert on the Enjoyment of Persons with Albinism Muluka Miti-Drummond.

Throughout 2022 Standing Voice was invited to present on its work during a number of international conferences and symposiums. This included a series of presentations in October at the 3rd African Dermatology Conference in Abidjan, Côte d’Ivoire, hosted by the Foundation Pierre Fabre; and November during the International Scientific Conference on Albinism (ISCA) hosted by the Global Albinism Alliance.

We also held press events and celebrations marking Skin Cancer Awareness Month and World Sight Day. We were visited by representatives from the President's Office TAMISEMI, the Prime Minister's Office, the National Eye Coordinator and other Ministry of Health representatives, Regional and District Education Officers, and national and regional leaders of the Tanzania Albinism Society and Association of Persons with Albinism in Malawi. Our special guests received tours of our services and gave special addresses at key landmarks throughout the year. These events were documented on radio and TV stations across Tanzania and Malawi airing on MBC, TBC, AZAM and Star TV among others.

8. DATA MANAGEMENT

In 2022 we conducted several activities to further develop data collection tools and strengthen the roll out of our custom built electronic data capture system across both countries. During the reporting period the system was active in all SCPP clinic locations across Tanzania and Malawi.

At the start of the year we built and piloted new data collection tools to support the Vision Programme. During its development we worked with Low Vision experts on albinism, members of the Standing Voice Advisory Board and Optometrists in Tanzania to gather as much expert input as possible. We first conducted a pilot, and delivered training to Optometrists before launching the new tools at a large-scale eye clinic held in Mwanza in May 2022. We purchased 17 new tablets to support expansion during 2022.

Feedback from Optometrists, staff and patients has been extremely positive. All reported that registration and eye examinations were more efficient, reducing waiting times and increasing the number of patients who can be seen during a clinic day. By the end of 2022, the system was operational across all Vision clinic locations in Tanzania.

In both countries, we continued delivering training to health professionals in the use of our data capture system. These health workers included Dermatologists, Dermato-Venereology Officers, Clinical Officers, Medical assistants, Optometrists and staff. Today, there are 115 personnel actively using the system in the field.

No. of people trained
Tanzania 41
Malawi 74
Total 115

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Standing Voice Report of the Trustees 1st January 2022 - 31st December 2022

9. FUNDING MATTERS

GRANT-MAKING POLICY

The charity's policy is to make grants to collaborating organisations who are in need of funds to deliver a service in partnership with Standing Voice. On occasion the trustees may decide to give a grant to a beneficiary organisation that is not working in partnership with Standing Voice, but is working towards a shared objective of the charity.

In line with our current activities the organisation or service funded must promote the wellbeing and social inclusion of people with albinism in Africa through advancing health, education, welfare or communitybased projects and services.

All grants are awarded on the condition of robust accounting and financial reporting standards; strength of internal policies and procedures (including safeguarding, finance and procurement policies); past records of grant management and successful implementation; and compliance with all relevant regulations and international standards as defined by Standing Voice in its grant contracts.

FUNDRAISING ACTIVITIES IN THE UK

Standing Voice applies for grants from trust funds, grant-giving foundations and institutions, and corporate donors. Standing Voice also raises funds donated by individuals reached through direct approaches and by holding planned fundraising events and campaigns.

The charity's principal sources of funding during the year have consisted of grant funders and a group of committed philanthropists donating to specific projects.

Throughout 2022 we were proud to be funded by many innovative Foundations and Trust funds including the Pierre Fabre Foundation, the Wellcome Trust, the International Foundation for Dermatology (IFD), the International League of Dermatological Societies (ILDS), the United Nations Voluntary Fund for Victims of Torture (UNVFVT), Essilor Vision for Life, the Sir Halley Stewart Trust, the British and Foreign School Society (BFSS), the John Armitage Charitable Trust, Inside the Same, Mite, Wings of Support, Free A Girl, the Friends of Malawi Association, Esther Ireland, the Evan Cornish Foundation, the Souter Charitable Trust, and many others including those who wish to remain anonymous.

The trustees extend their sincere gratitude to all individuals and grant-givers who have donated to the organisation this year to ensure we continue our vital work.

FINANCIAL PERFORMANCE

Income during the period 1st January 2022 to 31st December 2022 amounted to £911,951 (January 2021December 2021: £446,643). Voluntary income was £911,875 (2021: £446,615). Of the total income, £822,199 (2021: £418,022) was restricted and £89,752 (2021: £28,593) was unrestricted. The restricted income consists of donated funds from grant funders and individuals. £318,389 (2021: £252,853) of restricted funding was carried forward. Unrestricted income was mainly from individual donations.

Expenditure amounted to £777,946 (2021: £563,174) of which £715,371 (2021: £484,988) was project expenditure, £56,600 (2021: £72,847) was fundraising expenditure and £5,975 (2021: £5,339) was governance costs. Of the total expenditure, £706,978 (2021: £512,279) was restricted expenditure and £70,968 (2021: £50,895) was unrestricted expenditure.

Standing Voice exercises a policy of setting aside funds to cover 6 months of administration overheads as reserves, to cover core costs in the event of the organisation encountering a period of reduced income. At

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Standing Voice Report of the Trustees 1st January 2022 - 31st December 2022

the end of the financial year ending 31st December 2022 the charity carried forward a balance of £437,470 (2021: £303,465), of which £167,439 was available for overheads. The organisation also awaited funding responses from major grant funders. The trustees deemed reserve funds held to be sufficient, keeping in consideration the overheads budget allocations in restricted funds held, and the status of committed funding from new and existing donors due for disbursement in 2023 amounting to over £900,000.

EXPENDITURE SUPPORTING KEY OBJECTIVES

Standing Voice has been able to increase expenditure towards its life saving programmes in 2022 to £715,371.This has been vital at a time when our clients’ needs are under severe pressure due to worsening global economic conditions, increasing risk of climate change-related disasters, and the sustained threat of attack against people with albinism. This increase in project expenditure (a £230,833 increase on 2021) has been carefully planned and deemed viable based on securing multi-year funding partnerships in 2022. Expenditure on our projects promoting the wellbeing and social inclusion of people with albinism is consistent with Standing Voice’s objectives as defined in its governing constitution.

People with albinism in Tanzania and Malawi continue to benefit from capacity development; improved dermatological and ophthalmological health services; innovative trauma recovery interventions; increased access to education; and positive advances in local and international awareness on albinism resulting from Standing Voice’s project activity. Additionally, through training and coordination of health, social care and education service providers in 2022 we are proud to be building a sustained, locally driven response to this issue in both countries.

The charity’s projects this year have grown substantially both in terms of geographical reach, and depth of the interventions we are delivering across both countries of operation. Whilst growing the footprint of its work Standing Voice is progressively interlinking services, to ensure individual projects act as gateways for other essential services. Scaling up geographical reach, alongside investing in a holistic approach to our work has led Standing Voice to achieve its objective of combating human rights abuses against people with albinism by advancing integration in society in 2022.

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Standing Voice Report of the Trustees 1st January 2022 - 31st December 2022

10. GOVERNANCE AND RISK

FUTURE PLANS OF THE CHARITY

In 2023, we will continue to expand the geographical reach of our Skin Cancer Prevention Programme in both Tanzania and Malawi. We will further accelerate our training of community leaders, teachers, health professionals, civil society groups, people with albinism and their families. Our work to empower and build the capacity of people with albinism will develop through increasing our clients' access to information on their own health and welfare, and providing opportunities for them to communicate their perspectives to key stakeholders who have influence on the outcomes of their wellbeing.

Through our partnership with the Pierre Fabre Foundation we will continue adapting our dermatology programme to allow for the phasing in of other complimentary services at clinics, specifically psychosocial support and counselling. In Malawi the inclusion of these other forms of support will be co-funded by the United Nations Voluntary Fund for Victims of Torture and the European Commission. By the end of 2023, counselling available at Dermatology clinics will be accessible to people with albinism and their families across multiple regions and districts in Tanzania and Malawi.

At the end of 2022 we secured funding from new partners including the European Commission. Specifically in 2023 this new EU partnership will enable us to scale up the dermatology, security and psychosocial support we offer people with albinism living with extreme risks to their welfare. We are excited to be working alongside our partners Beyond Suncare and Youth Net and Counselling (YONECO) through this new project.

During 2023 the expansion of our work in Tanzania and Malawi, will be combined with our sustained efforts to continue catalysing action from national governments. We will achieve this through our advocacy work within and beyond these countries of operation, and by through our position as Chair of the National Action Plan (NAP) on Albinism in Tanzania, and as a member of the NAP task force in Malawi.

RISK

The primary risk to the charity (and by association its clients) is insufficient staff capacity to meet the growing needs of our target group. As our services increase in scope and depth we are continually evidencing the complexity of people with albinism’s life challenges and threats to their welfare. Meeting these challenges demands scaled up investment of resources to ensure we are able to sustain a high calibre and growing team.

We manage this risk through maintaining a varied portfolio of benefactor relationships, and through regular submission of new grant applications, and scrutiny of our expenditure pipeline. This allows us to plan for recruitment well in advance of new appointments, to ensure our team's development is delivered in line with funding commitments and strategy.

Additionally, Standing Voice consistently manages the risk of maladministration at the point of implementation through routine monitoring of our in-country teams in Tanzania and Malawi and deployment of robust control policies. Scheduled finance and activity reports are scrutinised upon submission, as a prerequisite for further fund disbursement by Standing Voice UK.Executive Management also monitors the flow of funds from the UK to our country offices through a two-step forex approval system, which ensures that any transfer between the UK and Malawi or Tanzania is reviewed and approved by two predetermined forex administrators at Standing Voice UK. Additionally, our UK trustees and management regularly visit Standing Voice local offices, partners and project sites to maintain visibility of all aspects of local operation, including potential risks that require new mitigation strategies.

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Standing Voice Report of the Trustees 1st January 2022 - 31st December 2022

RESPONSIBILITIES OF THE BOARD OF TRUSTEES

The Trustees are responsible for managing the affairs of the CIO and may for that purpose exercise all the powers of the CIO.

It is the duty of each charity trustee:

  1. to exercise his or her powers and to perform his or her functions in his or her capacity as a trustee of the CIO in the way he or she decides in good faith would be most likely to further the purposes of the CIO; and

  2. to exercise, in the performance of those functions, such care and skill as is reasonable in the circumstances having regard in particular to:

  3. any special knowledge or experience that he or she has or holds himself or herself out as having; and,

  4. if he or she acts as a charity trustee of the CIO in the course of a business or profession, to any special knowledge or experience that it is reasonable to expect of a person acting in the course of that kind of business or profession.

The Board of Trustees are responsible for complying with the requirements of the Charities Act 2011 with regard to the keeping of accounting records, to the preparation and scrutiny of statements of account, and to the preparation of annual reports and returns for submission to the Charity Commission.

PUBLIC BENEFIT

In accordance with section 17 of the Charities Act 2011 the Trustees confirm that they have had regard to the Charity Commission’s guidance in relation to public benefit. The Trustees have referred to the Charity Commission’s general guidance on public benefit when reviewing the charity’s aims and objectives and in planning the charity’s future activities. In particular, the Trustees have considered how planned activities contribute to the aims and objectives they have set.

TRUSTEES’ DECLARATION

There is no relevant information of which the charity independent examiner is unaware. Each Trustee has taken all the necessary steps that he/she ought to have taken as a Trustee in order to inform themselves of all relevant information, and to establish that the charity’s independent examiner is aware of that information.

Approved by the Board of Trustees and signed on its behalf by:

Sabine Zetteler Chair of the Board of Trustees 28/01/2023

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Standing Voice Report of the Trustees 1st January 2022 - 31st December 2022

11. ACCOUNTS

11.1 Independent Examiner’s Report to the Trustees of Standing Voice

I report on the accounts of the charitable company for the year to 31 December 2022 which are set out on the following pages.

Respective responsibilities of trustees and examiner

The trustees (who are also the directors of the company for the purposes of company law) are responsible for the preparation of the accounts. The trustees consider that an audit is not required for this year under section 114(2) of the Charities Act 2011 (the 2011 Act) and that an independent examination is needed.

The charity’s gross income exceeded £250,000 and I am qualified to undertake the examination by being a member of the Institute of Financial Accountants.

Having satisfied myself that the charity is not subject to audit under company law and is eligible for independent examination, it is my responsibility to:

examine the accounts under section 145 of the 2011 Act;

follow the procedure laid down in the General Directions given by the Charities Commission

under section 145 (5)(b) of the 2011 Act; and

state whether particular matters have come to my attention.

Basis of independent examiner’s report

My examination was carried out in accordance with the general directions given by the Charities Commission. An examination includes a review of the accounting records kept by the charity and a comparison of the accounts presented with those records. It also includes consideration of any unusual items or disclosures in the accounts and seeking explanations from you as trustees concerning any such matters. The procedures undertaken do not provide all the evidence that would be required in an audit and consequently no opinion is given as to whether the accounts present a

Independent examiner’s statement

In connection with my examination, no matter has come to my attention;

Carol Neale AFA MIPA

GS Verde Accountants Maple House Cleeve Bristol BS49 4FS

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Standing Voice Report of the Trustees 1st January 2022 - 31st December 2022

11.2 Statement of Financial Activities (SoFA)

Statement of Financial Activities (Incorporating an Income and Expenditure Account) for the period ended 31 December 2022:

Notes
Unrestricted
funds (£)
Restricted
income funds (£)
Total
2022 (£)
Total
2021 (£)		 Notes
Unrestricted
funds (£)
Restricted
income funds (£)
Total
2022 (£)
Total
2021 (£)		 Notes
Unrestricted
funds (£)
Restricted
income funds (£)
Total
2022 (£)
Total
2021 (£)		 Notes
Unrestricted
funds (£)
Restricted
income funds (£)
Total
2022 (£)
Total
2021 (£)		 Notes
Unrestricted
funds (£)
Restricted
income funds (£)
Total
2022 (£)
Total
2021 (£)
Income and endowments from:
Donations and legacies
Other trading activities
Income from investments
Income from charitable activities
Other income
89,676
-
76
-
-		 822,199
-
-
-
-		 911,875
-
76
-
-		 446,615
-
28
-
-
Total income and endowments 2 89,752 822,199 911,951 446,643
Expenditure on:
Raising funds 4,765
60,228
5,975		 51,835
655,143
-		 56,600
715,371
5,975		 72,847
484,988
5,339
Charitable activities
Other expenditure
Total expenditure 3 70,968 706,978 777,946 563,174
Net income/(expenditure) and
net movement in funds for the
year
Net income/(expenditure) before
other recognised gains/(losses)
Other recognised gains/(losses)
Gains and losses on revaluation of
fxed assets for charity’s own use
Gains and losses on investment
assets		 18,784
18,784
-
-		 115,221
115,221
-
-		 134,005
134,005
-
-		 -116,531
-116,531
-
-
Net income/(expenditure) and
movement in funds for the year
Total funds brought forward		 18,784
41,574		 115,221
261,891		 134,005
303,465		 -116,531
419,996
Total funds carried forward 60,358 377,112 437,470 303,465

The Statement of Financial Activities includes all gains and losses recognised in the year. All the activities derive from continuing operations during the above periods.

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Standing Voice Report of the Trustees 1st January 2022 - 31st December 2022

11.3 BALANCE SHEET

Balance Sheet as at 31 December 2022

Notes
Unrestricted
funds (£)
Restricted
income funds (£)
December
2022 (£)
December
2021 (£)		 Notes
Unrestricted
funds (£)
Restricted
income funds (£)
December
2022 (£)
December
2021 (£)		 Notes
Unrestricted
funds (£)
Restricted
income funds (£)
December
2022 (£)
December
2021 (£)		 Notes
Unrestricted
funds (£)
Restricted
income funds (£)
December
2022 (£)
December
2021 (£)		 Notes
Unrestricted
funds (£)
Restricted
income funds (£)
December
2022 (£)
December
2021 (£)
Fixed assets
Tangible investments
4
Intangible investments
- 7,932 7,932 10,854
Total fxed assets - 7,932 7,932 10,854
Current assets
Debtors and prepayments
5
Cash at bank and in hand
21,151
48,020		 79,323
318,389		 100,474
366,409		 60,971
261,891
Total current assets 69,941 397,712 466,883 322,862
Liabilities
Creditors: amounts falling due
within one year
6
Net current assets/(liabilities)
(8,813)
60,358		 (28,532)
369,180		 (37,345)
429,538		 (30,251)
292,611
Total assets less current
liabilities		 60,358 377,112 437,470 303,465
Creditors: amounts falling due
after one year
Provisions for liabilities and
charges		 -
-		 -
-		 -
-		 -
-
Net assets 60,358 377,112 437,470 303,465
Funds of the charity
Unrestricted funds
Restricted income funds
7
Endowment funds
60,358
-
-		 -
377,112
-		 60,358
377,112
-		 41,574
261,891
-
Total funds 60,358 377,112 437,470 303,465

The financial statements were approved and authorised for issue by the Trustees on 28/01/2023 and signed on their behalf by:

Gurmeet Kaur

Treasurer of the Board of Trustee

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Standing Voice Report of the Trustees 1st January 2022 - 31st December 2022

11.4 BASIS OF PREPARATION

Basis of preparation and accounting policies for year ended 31 December 2022

The financial statements have been prepared in accordance with Accounting and Reporting by Charities: Statement of Recommended Practice applicable to charities preparing their accounts in accordance with the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS 102) (effective 1 January 2015) – Charities SORP (FRS 102) and the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS 102).

Assets and liabilities are initially recognised at historical cost or transaction value unless otherwise stated in the relevant accounting policy notes.

1. ACCOUNTING POLICIES

This list of accounting policies has been applied by the charity.

Incoming Resources Incoming Resources
Recognition of incoming
resources		 These are included in the Statement of Financial Activities (SoFA) when:
- the charity becomes entitled to the resources;
- the trustees are virtually certain they will receive the resources; and
- the monetary value can be measured with sufcient reliability
Incoming resources with
related expenditure		 Where incoming resources have related expenditure (as with fundraising or contract
income) the incoming resources and related expenditure are reported gross in the
SoFA.
Grants and donations Grants and donations are only included in the SoFA when the charity has
unconditional entitlement to the resources.
Tax reclaims on donations
and gifts		 Incoming resources from tax reclaims are included in the SoFA at the same time as
the gift to which they relate.
Contractual income and
performance-related grants		 This is only included in the SoFA once the related goods or services have been
delivered.
Gifts in kind Gifts in kind are accounted for at a reasonable estimate of their value to the charity or
the amount actually realised.
Gifts in kind for sale or distribution are included in the accounts as gifts only when
sold or distributed by the charity.
Gifts in kind for use by the charity are included in the SoFA as incoming resources
when receivable.
Donated services and
facilities		 These are only included in incoming resources (with an equivalent amount in
resources expended) where the beneft to the charity is reasonably quantifable,
measurable and material. The value placed on these resources is the estimated value
to the charity of the service or facility received.
Volunteer help The value of any voluntary help received is not included in the accounts but is
described in the trustees’ annual report.
Investment income This is included in the accounts when receivable.
Investment gains and
losses		 This includes any gain or loss on the sale of investments and any gain or loss
resulting from revaluing investments to market value at the end of the year.

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Standing Voice Report of the Trustees 1st January 2022 - 31st December 2022

Expenditure and Liabilities Expenditure and Liabilities
Liability recognition Liabilities are recognised as soon as there is a legal or constructive obligation
committing the charity to pay out resources.
Governance costs Include costs of the preparation and examination of statutory accounts, the costs of
trustee meetings and cost of any legal advice to trustees on governance or
constitutional matters.
Grants with performance
conditions		 Where the charity gives a grant with conditions for its payment being a specifc level of
service or output to be provided, such grants are only recognised in the SoFA once
the recipient of the grant has provided the specifed service or output.
Grants payable without
performance conditions		 These are only recognised in the accounts when a commitment has been made and
there are no conditions to be met relating to the grant which remain in the control of
the charity.
Support Costs Support costs include central functions and have been allocated to activity cost
categories on a basis consistent with the use of resources, e.g. allocating property
costs by foor areas, or per capita, staf costs by the time spent and other costs by
their usage.
Assets
Tangible fxed assets for use These are capitalised if they can be used for more than one year, and cost at least
by charity £500. They are valued at cost or a reasonable value on receipt.
Investments quoted on a recognised stock exchange are valued at market value at the
Investments year-end. Other investment assets are included at trustees' best estimate of market
value.
Stocks and work in progress These are valued at the lower of cost or market value.

2. ANALYSIS OF INCOME AND ENDOWMENTS

Analysis Analysis 2022 (£) 2021 (£)
Donations and Legacies Restricted income
Unrestricted income		 822,199
89,676		 418,022
28,593
911,875 446,615
Other trading activities
Income from investments
Other income		 -
76
-		 -
28
-
Bank interest
Total income and endowments 911,951 446,643

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Standing Voice Report of the Trustees 1st January 2022 - 31st December 2022

3. ANALYSIS OF RESOURCES EXPENDED

Analysis Analysis 2022 (£) 2021 (£)
Costs of generating voluntary
income		 Staf costs
Support costs		 44,057
12,543		 54,109
18,738
56,600 72,847
Charitable activities Staf costs
Support costs
Direct project costs		 102,800
29,266
583,305		 126,254
43,721
315,013
715,371 484,988
Governance costs Independent examiner’s fee
Accounting advice & payroll services
Trustees’ expenses
Trustee meeting		 1,320
4,655
-
-		 1,200
4,139
-
-
5,975 5,339
Total 777,946 563,174

4. TANGIBLE FIXED ASSETS

Freehold land
and buildings
(£)
Other land and
buildings (£)
Plant,
machinery and
motor vehicles
(£)
Fixtures, fttings
and equipment
(£)
Total (£)		 Freehold land
and buildings
(£)
Other land and
buildings (£)
Plant,
machinery and
motor vehicles
(£)
Fixtures, fttings
and equipment
(£)
Total (£)		 Freehold land
and buildings
(£)
Other land and
buildings (£)
Plant,
machinery and
motor vehicles
(£)
Fixtures, fttings
and equipment
(£)
Total (£)		 Freehold land
and buildings
(£)
Other land and
buildings (£)
Plant,
machinery and
motor vehicles
(£)
Fixtures, fttings
and equipment
(£)
Total (£)		 Freehold land
and buildings
(£)
Other land and
buildings (£)
Plant,
machinery and
motor vehicles
(£)
Fixtures, fttings
and equipment
(£)
Total (£)		 Freehold land
and buildings
(£)
Other land and
buildings (£)
Plant,
machinery and
motor vehicles
(£)
Fixtures, fttings
and equipment
(£)
Total (£)
Cost
At 1 January 2022
Additions
Disposals
-
-
-		 -
-
-		 14,608
-
-		 -
-
-		 14,608
-
-
At 31 December
2021		 - - 14,608 - 14,608
Depreciation
At 1 January 2022
Charge for the year
Disposals
-
-
-		 -
-
-		 3,754
2,922
-		 -
-
-		 3,754
2,922
-
At 31 December
2022		 - - 6,676 - 6,676
Net Book Value
At 31 December
2022		 - - 7,932 - 7,932
At 1 January 2022 - - 10,854 - 10,854

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Standing Voice Report of the Trustees 1st January 2022 - 31st December 2022

5. DEBTORS AND PREPAYMENTS

Analysis of debtors
Amounts falling due
within one year (£)
Amounts falling due after
more than one year (£)		 Analysis of debtors
Amounts falling due
within one year (£)
Amounts falling due after
more than one year (£)		 Analysis of debtors
Amounts falling due
within one year (£)
Amounts falling due after
more than one year (£)		 Analysis of debtors
Amounts falling due
within one year (£)
Amounts falling due after
more than one year (£)		 Analysis of debtors
Amounts falling due
within one year (£)
Amounts falling due after
more than one year (£)
2022
2021
2022
2021
Trade debtors
Amounts due from subsidiary and associated
undertakings
Other debtors
Prepayments and accrued income		 -
13,651
-
86,823		 -
3,241
-
57,730		 -
-
-
-		 -
-
-
-
Total 100,474 60,971 - -

6. CREDITORS AND ACCRUALS

Analysis of creditors Amounts falling due
within one year (£)
Amounts falling due after
more than one year (£)		 Amounts falling due
within one year (£)
Amounts falling due after
more than one year (£)		 Amounts falling due
within one year (£)
Amounts falling due after
more than one year (£)		 Amounts falling due
within one year (£)
Amounts falling due after
more than one year (£)
2022
2021
2022
2021
Loans and overdrafts
Trade creditors
Amounts due to subsidiary and associated undertakings
Other creditors
Accruals and deferred income		 -
-
-
3,797
33,548		 -
1,200
-
2,882
26,169		 -
-
-
-
-		 -
-
-
-
-
Total 37,345 30,251 - -

7. RESTRICTED FUNDS

Fund Name
Purpose and Restrictions		 Fund Name
Purpose and Restrictions
Skin Cancer Prevention
(Restricted)		 Skin cancer prevention services for people with albinism in Tanzania and Malawi
Research (Restricted) Research into access to health for people with albinism in Tanzania
Awareness Raising (Restricted) Creating and promoting positive imagery of people with albinism in Africa to raise
awareness
Vision Programme (Restricted) Vision services for people with albinism in Tanzania
Umoja Children Centre Building of a centre for learning and healing for children with albinism in Tanzania
Malawi Operations Operational overheads for Standing Voice’s team based in Lilongwe
UNVFVT Victim Support) Psychosocial and material assistance for survivors of torture who have albinism in
Malawi, funded by the UNVFVT

52

Standing Voice Report of the Trustees 1st January 2022 - 31st December 2022

Movement of major funds:

Fund names
Skin Cancer Prevention
Research
Awareness Raising
Vision Programme
Umoja Children Centre
Malawi Operations
UNVFVT Victim Support
Core Costs
Total Restricted Funds		 Fund
balances
brought
forward 1
January
2022 (£)
Incoming
resources
(£)
Outgoing
resources
(£)
Transfers
(£)
Gains and
losses (£)		 Fund
balances
brought
forward 1
January
2022 (£)
Incoming
resources
(£)
Outgoing
resources
(£)
Transfers
(£)
Gains and
losses (£)		 Fund
balances
brought
forward 1
January
2022 (£)
Incoming
resources
(£)
Outgoing
resources
(£)
Transfers
(£)
Gains and
losses (£)		 Fund
balances
brought
forward 1
January
2022 (£)
Incoming
resources
(£)
Outgoing
resources
(£)
Transfers
(£)
Gains and
losses (£)		 Fund
balances
brought
forward 1
January
2022 (£)
Incoming
resources
(£)
Outgoing
resources
(£)
Transfers
(£)
Gains and
losses (£)		 Fund
balances
carried
forward 31
December
2022 (£)
6,678
-
55,058
10,612
121,360
2,332
5,481
60,370		 355,954
-
-
73,453
87,500
23,193
33,455
248,644		 361,487
-
4,819
75,264
352
24,958
38,165
201,933		 -
-
-
-
-
-
-
-		 -
-
-
-
-
-
-
-		 1,145
-
50,239
8,801
208,508
567
771
107,081
261,891 822,199 706,978 - - 377,112

8. UNITED NATIONS VOLUNTARY FUND FOR VICTIMS OF TORTURE

Grant income 2022 (£)
P-1187-DA-22 33,455
Expenditure 2022 (£)
Salaries 13,114
Benefciary support and training 18,928
International travel 446
National travel 372
Contribution to the Independent Examination of the
charity’s accounts		 595
Total amount (£) 33,455

9. DETAILS OF CERTAIN ITEMS OF EXPENDITURE

Trustee expenses
2022 (£)
2021 (£)		 Trustee expenses
2022 (£)
2021 (£)		 Trustee expenses
2022 (£)
2021 (£)
Number of trustees who were paid expenses
Nature of the expenses		 1
Bill payments		 1
Bill payments
Total amount paid (£) - 357

53

Standing Voice Report of the Trustees 1st January 2022 - 31st December 2022

Fees for examination of the accounts
2022 (£)
2021 (£)		 Fees for examination of the accounts
2022 (£)
2021 (£)		 Fees for examination of the accounts
2022 (£)
2021 (£)
Independent examiner’s or auditor’s fees for reporting on the accounts
Other fees (for example: advice, consultancy, accountancy services) paid to
the independent examiner or auditor		 1,320
3,696		 1,200
964

Support costs:

Support Costs Type Fundraising
activity (£)		 Charitable Activity
(£)		 Governance
Activity (£)		 Total Cost (£)
Building costs
Communications
Legal & professional
Financial costs
Depreciation		 12,946
1,397
964
-3,640
877		 30,206
3,259
2,249
-8,494
2,045		 -
-
-
-
-		 43,152
4,656
3,213
-12,134
2,922
Total amount (£) 12,544 29,265 - 41,809

10. GRANT-MAKING

Grants to individuals/institutions
Purpose for which grants made
31 Dec 2022
Total amount (£)		 Grants to individuals/institutions
Purpose for which grants made
31 Dec 2022
Total amount (£)		 31 Dec 2021
Total amount(£)
Health services / Skin cancer prevention treatments and
manufacturing of sunscreen		 6,000 551
Total amount (£) 6,000 551

There were no support costs associated with the charity’s grant-making.

11. STAFF COSTS

Staf costs
2022 (£)
2021 (£)		 Staf costs
2022 (£)
2021 (£)		 Staf costs
2022 (£)
2021 (£)
Gross wages, salaries and benefts in kind
Employer’s National Insurance costs
Pension costs		 136,148
7,513
3,196		 167,317
9,703
3,343
Total staf costs 146,857 180,363

54

Standing Voice Report of the Trustees 1st January 2022 - 31st December 2022

Average number of full-time equivalent employees in the year
2022
2021		 Average number of full-time equivalent employees in the year
2022
2021		 Average number of full-time equivalent employees in the year
2022
2021
The parts of the charity in which the employees work:
Fundraising
Charitable activities
Governance
Other
2
3
1
-		 2
3
1
-
Total 6 6

12. TRANSACTIONS WITH RELATED PARTIES

Amounts paid or beneft value Amounts paid or beneft value Amounts paid or beneft value Amounts paid or beneft value
Name of trustee or connected party
Legal authority (e.g. order, governing
document)
2022 (£)
2021 (£)
Harry Freeland Governing document 45,000 45,000

There are no amounts owing to or from the charity’s trustees or other related parties by the charity at the year end. All transactions undertaken by (or on behalf of) the charity in which a trustee or related party has a material interest have been disclosed in the Notes to the Accounts.

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