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← Standing Voice

2023-12-31-accounts

Annual Report and Accounts

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Standing Voice Report of the Trustees 1st January 2023 - 31st December 2023

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FOREWORD

This year the charity’s projects have grown substantially both in terms of geographical reach, and depth of the interventions being delivered. Whilst growing the footprint of our work we are 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 is enabling us to achieve our objectives of combating human rights abuses against people with albinism by further advancing integration within society and improving access to services in 2023.

This year, we have further advanced our strategy of training health workers, community leaders, 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 (SCPP) is now providing life saving dermatological healthcare and education to 10,829 people with albinism across 206 hospitals and health centres in Tanzania and Malawi and is the largest programme of its type existing for persons with albinism in Africa today. Meanwhile our Vision and Education Programme (VEP) has also accelerated its expansion and is now accessible to 3,877 people in Tanzania and will be replicated in Malawi for the first time in 2024. The VEP has continued to drive forward our vision of a future where children with albinism are able to realise their full potential. To further support this mission in 2023 our team partnered with schools across Tanzania to deliver a teacher training programme. Through this programme 102 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.

People with albinism continue to be targeted by violent attacks throughout Africa. 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 team is at the forefront of this support, providing a package of tailored assistance to people with albinism who have suffered 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 and funding various 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.

On behalf of everyone at Standing Voice we want to say a huge thank you for the continued support and collaboration of our long-term funders and technical partners; the Foundation Pierre Fabre, the United Nations Voluntary Fund For Victims of Torture, the International league of Dermatology Societies, International Foundation For Dermatology, the Bilton Foundation, the John Armitage Charitable Trust, Inside the Same, Esther Ireland, Souter Charitable Trust, Evans Cornish Foundation and the Mite Organisation. Thanks to the unwavering support of these partners we have been able to strengthen and expand our life saving work to new areas of Tanzania and Malawi this year. This has included scaling up Welfare and Security initiatives to support the most vulnerable and at-risk people with albinism we work with through strengthened access to our toll-free helplines and provision of direct counselling and tailored support services. We were also delighted to welcome the support of new funders in 2023, including the launch of a new two year partnership with the European Commission through the Ufulu Wanga Project (Our Rights), and through a new one year partnership with the Deloitte Community Fund. I’d also like to extend thanks to those funders and partners who wish to stay anonymous. Finally, thank you to all our staff, volunteers, supporters, partners and funders around the world who have contributed towards realising our aims this year. Without you, our work would not be possible.

Looking ahead, we remain committed to our mission of building a better world for persons with albinism, where their rights are universally upheld and all forms of discrimination are ended.

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Presented by
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Sabine Zetteler Chair of the Board of Trustees 28/04/2024

2

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

3.1 Geographical Reach (all programmes)

3.2 Demographic breakdown

3.3 Population pyramids

4. Skin Cancer Prevention

4.1 Reach and Growth

4.2 Geographic Breakdown SCPP

4.3 Retention

4.4 Screening and Medical Management

4.5 Referral Management

4.6 Sun Protection Measures

4.7 Educational Resources

4.8 Community Knowledge

4.9 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: Mite Organisation (p.1, p.2, p.8, p.20, p.27, p.30, p.42, p.45, p.63, p.64), Owen Mchekeni ( p.10 p.44 ), Sylvi Schaffrath

Standing Voice Report of the Trustees 1st January 2023 - 31st December 2023

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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 Chinkwezule
Jonathan Beale
Katwale Magaga
Ally Possi
Martha Mganga
Harry Freeland
Harry Freeland, Jonathan Beale, Sam Clarke, Alfred Thomas
Giovanna Giuriolo, Ruth Ayarza. 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 2023 - 31st December 2023

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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 2024.

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 2023 - 31st December 2023

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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 and Tanzania Board of Trustees. During the reporting period the charity had 6 paid staff members in the UK supported by a committed team of volunteers. Our global team comprises an additional 22 paid staff members based in Tanzania and 12 based in Malawi. Across all offices this equates to a total international staff team comprising 40 people.

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, Malawi and Tanzania 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 2023 - 31st December 2023

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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 human rights defenders and partners in other countries in the region. Our team has over 18 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, Low 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 2023 we delivered programmes focused on improving access to Health, Education, Livelihoods, psychosocial support and Trauma recovery, reaching thousands of people with albinism across Tanzania and Malawi.

Through all these interventions we reached 10,829 people with albinism and thousands members of wider society through training and advocacy.

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Geographical reach (Dec 2023) Total people with albinism served through all programmes: 10,829

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8,262
2,567
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3.2 Demographic Breakdown

Tanzania Malawi
Number % Number %
Total registered patients (across all programs) 8,262 2,567
Female 4,213 51% 1,285 50.1%
Male 4,049 49% 1,282 49.9%
Average age 19 17
0-9 2,652 32% 888 34.7%
10-19 2,729 33% 757 29.4%
20-29 1,220 14.8% 462 18.0%
30-39 773 9.4% 258 10.0%
40-49 494 6.0% 129 5.0%
50-59 236 2.9% 40 1.5%
60-69 120 1.5% 28 1.2%
70 > 38 0.4% 5 0.2%

We are encouraged to see continued gender parity in our patient population, with women and men respectively comprising 51% and 49% of all registered patients in Tanzania, and 50.1% and 49.9% of all 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 65.1% of all registered patients are aged 19 or below; in Malawi, the average age is 17 and 64.0% of all registered patients are aged 19 or below. Across both countries 7,021 people (or 64.9%) of all registered patients are under the age of 19, and 80.4% are under the age of 30. Compared with 19.6% over 30, and just 4.3% over the age of 50.

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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.
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The population pyramids below demonstrate the distribution of our registered patient population. In Tanzania 65.1% of all registered clients are aged 19 or below, and in Malawi, 64.0% of all registered clients are aged 19 or below.

Distribution of Registered Patients in Tanzania

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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 0 130 260 390 520 650
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Distribution of Registered Patients in Malawi

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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 50 100 150 200 250
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4. SKIN 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) in 2013. Today, this growing network of dermatology clinics is reaching 9,912 people with albinism (PWA) 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 over 2000 health professionals and civil society actors. Through the support and close collaboration of the Foundation Pierre Fabre, European Commission and International league of Dermatology Societies in 2023 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 2023 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 govt and civil society to ensure the full mobilisation of PWA 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 track 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 19 19 2 16 17 1
Number of clinics delivered during reporting period 228 237 9 106 144 38
Total number of patients registered in the database 5,130 7,345 2,215 1,920 2,567 642
Patients seen in this period 5,130 5,247 117 1,920 1,978 58
New patients seen in this period 540 1,075 535 114 761 642

By the end of 2023, the SCPP had exceeded or met all targets regarding patient reach and geographical coverage. The programme had registered 9,912 patients across Tanzania and Malawi, surpassing our combined target of 7,050 patients for both countries by a margin of 28.8%. This included 7,345 patients in Tanzania and 2,567 patients in Malawi.

19 regions of Tanzania were reached during this reporting period (meeting our target of 19 for the end of 2023), while 17 districts of Malawi were reached (surpassing our target of 16 districts). This means that today the SCPP is operational in 61.3% of all regions in Tanzania (19 of 31), and 60.7% coverage of all districts in Malawi (17 of 28). Clinics are now active in 206 Govt hospitals and health centres across both countries. 129 of these facilities are in Tanzania, and 77 are in Malawi. A total of 383 clinics were delivered across both countries during the reporting period. 237 of these were in Tanzania and 144 in Malawi. Since July 2021 and the start of the phase II partnership with the Foundation Pierre Fabre, 781 clinics have been delivered across Tanzania and Malawi.

Across the entire year we welcomed a total of 1,836 new patients across both countries, reflecting a combined annual growth rate of 18.4%. This included 1,075 new patients registered in Tanzania (a growth rate of 14.6% from 2022). In Malawi, we saw 761 new patients in 2023 (a growth rate of 29.5% from 2022). The faster rate of patient growth in Malawi during 2023 was down to rapid expansion of the programme from 12 districts to 17.

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i//li, I"fi,

4.2 Geographic Breakdown SCPP

TANZANIA
Registered Patients - Disaggregated by Region, Gender, and New/Existing
Region
Existing patients
New patients
Total patients
M
F
Total
M
Growth in
M (%)
F
Growth in
F (%)
Total
Total
Growth (%)
M
F
Total
Dodoma
229
195
424
16
7.0%
24
12.3%
40
9.4%
245
219
464
Katavi
46
76
122
13
28.3%
8
10.5%
21
17.2%
59
84
143
Tabora
206
231
437
21
10.2%
20
8.7%
41
9.4%
227
251
478
Geita
156
151
307
16
10.3%
17
11.3%
33
10.7%
172
168
340
Singida
134
200
334
16
11.9%
20
10.0%
36
10.8%
150
220
370
Mara
186
205
391
2
1.1%
6
2.9%
8
2.0%
188
211
399
Simiyu
202
161
363
14
6.9%
8
5.0%
22
6.1%
216
169
385
Kagera
136
132
268
9
6.6%
10
7.6%
19
7.1%
145
142
287
Kigoma
116
109
225
7
6.0%
4
3.7%
11
4.9%
123
113
236
Mwanza
352
394
746
24
6.8%
25
6.3%
49
6.6%
376
419
795
Shinyanga
321
262
583
18
5.6%
10
3.8%
28
4.8%
339
272
611
Dar es Salaam
350
383
733
56
16.0%
70
18.3%
126
17.2%
406
453
859
Tanga
236
268
504
52
22.0%
63
23.5%
115
22.8%
288
331
619
Arusha
12
21
33
0
N/A
0
N/A
0
0.0%
12
21
33
Manyara
40
37
77
2
5.0%
3
8.1%
5
6.5%
42
40
82
Morogoro
212
212
424
45
21.2%
42
19.8%
87
20.5%
257
254
511
Pwani
138
161
299
33
23.9%
36
22.4%
69
23.1%
171
197
368
Iringa
0
0
0
47
N/A
63
N/A
110
N/A
47
63
110
Mbeya
0
0
0
75
N/A
69
N/A
144
N/A
75
69
144
Ruvuma
0
0
0
42
N/A
69
N/A
111
N/A
42
69
111
Total 3,072 3,198
6,270
508
16.5%
567
17.7%
1,075
17.1%
3,580 3,765
7,345

Annually, we saw a 16.5% increase in registered male patients and a 17.7% increase in registered female patients in Tanzania. Our fastest-growing regions were Pwani (23.1%), Tanga (22.8%) and Morogoro (20.5%), while our slowest-growing regions were Mara (2.0%), Shinyanga (4.8%), Kigoma (4.9%), Simiyu (6.1%) Manyara (6.5%) and Mwanza (6.6%), which with the exception of Manyara are the regions where the SCPP has been operating longest.[1]

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Dar es Salaam
Mwanza
Tanga
Shinyanga
Morogoro Existing patients
Tabora New patients
Dodoma
Mara
Simiyu
Singida
Pwani
Geita
Kagera
Kigoma
Mbeya
Katavi
Ruvuma
Iringa
Manyara
Arusha
0 225 450 675 900
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~~The top map indicates the distributional density of our registered patients in Tanzania: Dar es Salaam has the most~~ patients (859) while Arusha has the fewest (33). The bottom map indicates regional growth rates in registered patients: Pwani is growing quickest (23.1%), while Mara is growing slowest (2.0%).

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15

MALAWI Registered Patients - Disaggregated by Region, Gender, and New/Existing Registered Patients - Disaggregated by Region, Gender, and New/Existing Registered Patients - Disaggregated by Region, Gender, and New/Existing Registered Patients - Disaggregated by Region, Gender, and New/Existing Registered Patients - Disaggregated by Region, Gender, and New/Existing Registered Patients - Disaggregated by Region, Gender, and New/Existing Registered Patients - Disaggregated by Region, Gender, and New/Existing Registered Patients - Disaggregated by Region, Gender, and New/Existing Registered Patients - Disaggregated by Region, Gender, and New/Existing
Existing patients New patients Total patients
District M F Total M Growth in
M (%)		 F Growth in F
(%)
Total		 Total
Growth (%)		 M F Total
Machinga 122 111 233 3 2.5% 3 2.7% 6 2.6% 125 114 239
Mangochi 186 240 426 11 5.9% 12 5.0% 23 5.4% 197 252 449
Zomba 63 59 122 14 22.2% 9 15.3% 23 18.9% 77 68 145
Phalombe 41 44 85 2 4.9% 5 11.4% 7 8.2% 43 49 92
Mulanje 68 69 137 8 11.8% 11 15.9% 19 13.9% 76 80 156
Balaka 23 21 44 8 34.8% 6 28.6% 14 31.8% 31 27 58
Dedza 1 0 1 68 N/A 61 N/A 129 N/A 69 61 130
Ntcheu 1 1 2 70 N/A 62 N/A 132 N/A 71 63 134
Blantyre 69 75 144 31 44.9% 31 41.3% 62 43.1% 100 106 206
Mchinji 49 33 82 10 20.4% 16 48.5% 26 31.7% 59 49 108
Lilongwe 153 156 309 12 7.8% 15 9.6% 27 8.7% 165 171 336
Chikwawa 1 0 1 24 N/A 27 N/A 51 N/A 25 27 52
Thyolo 0 0 0 51 N/A 53 N/A 104 N/A 51 53 104
Chiradzulu 1 0 1 47 N/A 45 N/A 92 N/A 48 45 93
Salima 27 16 43 0 0% 0 0% 0 0.0% 27 16 43
Nkotakota 52 54 106 12 23.1% 3 5.6% 15 14.2% 64 57 121
Ntchisi 34 30 64 5 14.7% 3 10.0% 8 12.5% 39 33 72
Other 5 1 6 10 N/A 13 N/A 23 N/A 15 14 29
Total 896 910 1,806 386 42.6% 375 41.1%% 761 41.9% **1,282 ** 1,285 2,567

Annually, we saw a 42.6%% increase in registered male patients and a 41.1% increase in registered female patients in Malawi. By far our fastest-growing district was Balaka (31.8%), followed by Zomba (18.9%). Our longest running districts in Malawi; Mangochi (5.4%) and Machinga (2.6%) saw the slowest patient growth. Growth is N/A for Dedza and Ntcheu which have been entirely new in districts reach through this project.[2]

==> picture [506 x 242] intentionally omitted <==

----- Start of picture text -----
Mangochi
Lilongwe
Machinga
Blantyre
Mulanje Existing patients
Zomba New patients
Ntcheu
Dedza
Nkotakota
Mchinji
Thyolo
Chiradzulu
Phalombe
Ntchisi
Balaka
Chikwawa
Salima
Other
0 125 250 375 500
----- End of picture text -----

1. Page 9: Growth is N/A for Iringa, Mbeya and Ruvuma in Tanzania, which were entirely new regions in 2023.

2. Page 10: Growth is N/A for Ntcheu, Dedza, Thyolo, Chiradzul and Chikwawa, which were entirely new districts in 2023; and for 5 districts that we have 6 patients registered through delivery of International Albinism Awareness Day events. These additional districts combined as ‘Other’ in this table – are Mwanza, Nsanje, Nkhata Bay, Karonga and Dowa.

16

The map on the left indicates the distributional density of our registered patients in Malawi: Mangochi has the most patients (449) while Salima has the fewest (43). The map on the right indicates district growth rates in registered patients: the fastest growth was in Blantyre (43.1%), while Salima is growing slowest (0%).

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4.3 Retention

Indicator Tanzania Malawi Total
Patients registered end of 2022 6,270 1,806 8,076
Patients registered end of 2023 7,345 2,562 9,907
Patients seen in 2023 5,247 1,978 7,225
New patients seen in 2023 1,075 756 1,831
Existing patients seen in 2023 4,172 1,222 5,394
Patients who did not return in 2023 2,098 584 2,682
Annual retention rate 66.5% 67.7% 66.8%

In Tanzania, we saw 5,247 individual patients throughout 2023. Of these, 4,172 patients were returning within 12 months (representing an annual retention rate of 66.5%). In Malawi the picture was similar: in 2023 we saw 1,978 patients, of whom 1,222 were returning within 12 months (an annual retention rate of 67.7%). Across both countries in 2023 we saw 7,225 individual patients, of whom 5,394 were returning within 12 months (a combined annual retention rate of 66.8%).

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 (and measure) for a number of reasons. Patient attendance can be undermined by a range of factors including:

18

Patients returning within 12 months Patients not returning within 12 months

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----- Start of picture text -----
33.5% 32.3%
Tanzania 2023 Malawi 2023
66.5% 67.7%
----- 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. Our electronic database helps us to monitor and analyse 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 ask 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 2023 we scaled up the use of direct SMS communications with patients to announce upcoming clinic dates. 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 and follow up. 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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----- Start of picture text -----
19
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To ensure high patient turnout we deploy a diverse range of methods to help mobilise people with albinism and their families to clinic sites. Methods of mobilisation include coordination lead by Albinism Associations, Govt Social Welfare departments and school teachers, radio announcements, social media communications and direct SMS messages to patients phones.

To track and evaluate mobilisation clients are asked a series of questions on how they heard about the service. The table below demonstrates analysis of the most effective forms of mobilisation during 2023.

How did you hear about the clinic? Tanzania 2023 Tanzania 2023 Malawi 2023 Malawi 2023 Total Total
Number of people 8 345 3 232 11 577
MSN message 1,695 20.3% 172 5.3% 1,867 16.1%
Albinism Associations 4,301 51.5% 2,015 62.4% 6,316 54.7%
Social Welfare Ofcers / Health Surveillance Assistants 1,482 17.8% 641 19.8% 2,123 18.3%
Teacher / School 608 7.3% 253 7.8% 861 7.4%
Relative / Neighbour 61 0.7% 48 1.5% 109 0.9%
Radio advert 21 0.3% 18 0.6% 39 0.3%
Social Media 107 1.3% 38 1.2% 145 1.3%
Other 70 0.8% 47 1.4% 117 1.0%

From the table above we see a similar pattern of success from the different types of mobilisation methods deployed across both countries. The most common way patients reported hearing about clinics was via their albinism associations leaders, which equated to 51.5% of all PWA mobilised in Tanzania and 62.4% in Malawi. The role of Social Welfare Officers and Heath Surveillance Assistants played a significant role in mobilising patients to clinics with 17.8% of all patients in Tanzania and 19.8% in Malawi hearing about clinics through these Govt actors. Meanwhile, the education system in both countries continued to play an key role in PWA accessing dermatology services with 7.3% of PWA in Tanzania and 7.8% of PWA in Malawi hearing about clinics through teachers and schools. At the end of 2022 Standing Voice introduced direct MSN messaging to patients phones in Tanzania which had an immediate impact in 2023, with 20.3% of all PWA in Tanzania and 5.3% in Malawi hearing about clinics via MSN messaging. The lower figure in Malawi is a result of this new method of mobilisation being deployed later on in 2023.

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4.4 Screening and Medical Management

Indicator Tanzania Tanzania Malawi Malawi Total Total
Total patients seen 5,247 1,978 7,225
Number of examinations 8,345 3,232 11,577
Number of cryotherapy procedures7 3,047 36.5% 2,586 81.1% 5,633 48.7%
Number of patients receiving cryotherapy 1,159 22.0% 920 46.5% 2,079 28.8%
Number patients referred for surgical procedures 306 5.8% 169 8.5% 475 6.6%
Number of examinations where patients present with…
Severe erythema 113 1.4% 345 10.7% 458 4.0%
Moderate erythema 750 9.0% 1,580 48.9% 2,330 20.1%
Mild erythema 2,966 35.5% 2,490 77.0% 5,456 47.1%
Ectropion 157 1.9% 237 7.3% 394 3.4%
Multiple AKs 840 10.1% 770 23.8% 1,610 13.9%
Possible tumours 286 3.4% 140 4.3% 426 3.7%

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 81.1%, compared to 36.5% in Tanzania. In addition multiple Actinic keratosis were found during 23.8% of all examinations conducted in Malawi, compared with 10.1% 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 continued rapid expansion of the SCPP in Malawi during 2023 we enrolled a large number of new patients who had never before accessed Dermatology services. This provides additional reasons for the higher rates of skin conditions observed in the country during the reporting period.

Prevalence of Clinical Conditions among Patients Seen (January – December 2023)

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----- Start of picture text -----
100%
Tanzania
Malawi
10%
1%
Severe Moderate Mild Ectropion Multiple Possible
erythema erythema erythema actinic tumours
keratoses
----- End of picture text -----

21

Provisional doctor’s diagnosis during clinics 2023
Indicator Tanzania Malawi
Possible tumours identifed during clinics 396 255
SCC 176 44.4% 156 61.2%
BCC 181 45.7% 52 20.4%
Other/unknown 39 9.8% 47 18.4%
Distribution of possible tumours by body part 396 255
Scalp 59 14.9% 44 17.3%
Face, ears, eyelids 186 47.0% 114 44.7%
Neck 24 6.1% 15 5.9%
Trunk 18 4.5% 13 5.1%
Back and shoulders 61 15.4% 21 8.2%
Upper limbs 38 9.6% 27 10.6%
Lower limbs 10 2.5% 21 8.2%

A total of 651 possible tumours were provisionally diagnosed during SCPP clinics. In Tanzania, doctors identified 396 possible tumours in 306 patients. 44.4% of tumours were identified as SCCs (down from 49.6% in 2022), 45.7% as BCCs (up from 41.9% in 2022), and 9.8% as other or unknown conditions (up from 8.5% in 2022). In Malawi, doctors found 255 possible tumours in 169 patients, with 61.2% diagnosed as SCC (up from 59.9% in 2022), 20.4% as BCC (down from 26.2% in 2022), and 18.4% as other or unknown (up from 13.9% in 2022).

Distribution of tumours identified on body parts was similar in both countries. The body parts most affected in both Tanzania and Malawi was the face, ears and eyelids, with 61.9% and 62.0% of all tumours identified being found on these three areas of the body.

Distribution of tumours by body parts in 2023

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----- Start of picture text -----
3%
8%
9.6% 14.9% 17.3%
10.6%
15.4%
8.2%
Tanzania Malawi
396 tumours 255 tumours
4.5% 5.1%
6.1% 5.9%
47.0%
44.7%
Scalp
Face, ears, eyelids
Neck
Trunk
Back and Shoulders
Upper limbs
Lower limbs
----- End of picture text -----

22

4.5 Referral Management

From January to December 2023, 475 patients were referred for further treatment by dermatologists at SCPP clinics. This included 306 patients in Tanzania and 169 patients in Malawi.

Patient Referral Status Patient Referral Status Patient Referral Status 2023
Indicator Tanzania Malawi Total
Total number of patients sent for referral 306 169 475
Completed treatment 251 82.0% 128 75.6% 379 79.8%
Active treatment 34 11.1% 29 17.2% 63 13.3%
Awaiting treatment 12 3.9% 3 1.8% 15 3.2%
Refused treatment 2 0.7% 1 0.6% 3 0.6%
Undergoing palliative care 4 1.3% 4 2.4% 8 1.7%
Passed away 3 1.0% 4 2.4% 7 1.5%

This year there were 306 referrals made in Tanzania and 169 in Malawi. Encouragingly, the majority of referred patients have now completed their treatment (82.0% in Tanzania and 75.6% in Malawi). Some patients are still in active treatment (11.1% in Tanzania and 17.2% in Malawi), while 3.9% and 1.8% of patients respectively are awaiting treatment.

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

Patient referral status 2023

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----- Start of picture text -----
1.0% 2.4%
1.3% 2.4%
0.7% 0.6%
3.9% 11.1% 1.8%
17.2%
Tanzania Malawi
75.6%
82.0%
Active treatment Completed treatment Awaiting treatment
Refused treatment Palliative care Passed away
----- End of picture text -----

23

Referral Results 2023 Referral Results 2023 Referral Results 2023
Indicator Tanzania Malawi Total
Patients for whom histology results are available 273 138 401
Confrmed diagnoses5 316 149 465
SCC 156 49.4% 57 38.3% 213 45.8%
BCC 139 44.0% 76 51.0% 215 46.2%
Other e.g. ulcers, benign lesions, warts, cysts etc. 21 6.6% 16 10.7% 37 8.0%

During 2023 we received the histology results of 316 biopsies in Tanzania and 149 biopsies in Malawi. In Tanzania, 49.4% of results were confirmed as SCCs, 44% as BCCs, and 6.6% were other conditions, benign or non-cancerous. In Malawi, 38.3% of results were confirmed as SCC, 51.0% as BCC, and 10.7% were other conditions.

In new locations the SCPP continues to see patients with advanced tumours. At the end of 2023 4 patients in Tanzania and 4 patients in Malawi were receiving palliative care support. Sadly 7 patients passed away from skin cancer during the reporting period (3 in Tanzania and 4 in Malawi).

diagnoses is greater than the number patients with histology results available

~~sessions [conducted] at clinics, I have learned a lot more about my condition~~ . I am now able to educate others on albinism and I have become more confident in myself”. 24 Barnabas Magashi Shilinde, Biharamulo, Kagera district, Tanzania

Total patient referrals Total patient referrals and status since 2017 since 2017
Indicator Tanzania Malawi Total
Total number of patients referred for surgery 1,065 468 1,533
Completed treatment 838 78.7% 327 69.9% 1,165 76.0%
Active treatment 136 12.8% 88 18.8% 224 14.7%
Waiting for treatment 27 2.5% 24 5.1% 51 3.2%
Refused treatment 14 1.2% 9 1.9% 23 1.5%
Passed away from skin cancer 41 4.0% 19 4.1% 60 3.9%
Passed away from other causes 9 0.8% 1 0.2% 10 0.7%

Across Tanzania and Malawi there has been a total of 1,533 referrals made through the SCPP since 2017. 1,065 of these have been made in Tanzania and 468 in Malawi. The vast majority of patients referred for skin cancer treatment since 2017 have completed their treatment (78.7% in Tanzania and 69.9% in Malawi). Some patients continue to undergo active treatment (12.8% in Tanzania and 18.8% in Malawi), which includes 6 patients in Tanzania and 13 patients in Malawi who are currently receiving palliative care treatment. 60 patients registered in the SCPP have passed from from skin cancer since 2017.[6]

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----- Start of picture text -----
0.8% Patient referral status 2017-2023
4.0% 4.1%
1.4% 1.9% 0.2%
2.5% 12.8% 5.1% 18.8%
Active treatment
Completed treatment
Tanzania Awaiting treatment Malawi
Refused treatment
Passed away SC
Passed other causes
78.5% 69.9%
----- End of picture text -----

25 Rose Temaheri Joseph, Tabora, Tanzania

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

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----- Start of picture text -----
20%
Tanzania
Malawi
16%
12%
8%
4%
0%
----- End of picture text -----

Patient referred for surgical procedures since 2017

13.6% of all registered patients in Tanzania and 19.8% of all registered patients in Malawi have been referred for surgery or other treatments since 2017. These are high percentages that demonstrate the scale of the skin cancer crises facing people with albinism in Africa, particularly in Malawi where the programme has been operating for a shorter timeframe.

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----- Start of picture text -----
“The Skin Cancer Prevention Programme has saved my life
and I now have hopes to see my children grow.”
Skin Cancer patient
----- End of picture text -----

==> picture [12 x 8] intentionally omitted <==

----- Start of picture text -----
26
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4.6 Sun Protection Measures

Indicator Tanzania Malawi Total
S2
2021		 2022 2023 S2
2021		 2022 2023 all
years
Number of jars of sunscreen distributed 8,894 14,816 22,093 1,722 12,300 9,731 69,556
Number of individuals receiving sunscreen 3,269 4,651 5,247 661 1,521 1,978 17,327
Number of sunglasses distributed 0 3,795 5,214 15 269 177 9,470
Number of hats produced locally 4,381 7,458 13,350 N/A N/A N/A 25,183
Number of hats distributed 3,269 7,290 8,345 238 1,431 2,620 23,193
Number of umbrellas distributed 192 505 692 0 29 20 1,438
UV protective lip balm 0 0 0 0 567 876 1,443

During 2023 the SCPP distributed thousands of sun-protective items across Tanzania and Malawi. In Tanzania this included 22,093 pots of sunscreen, 8,345 wide-brimmed hats, 692 umbrellas and 5,214 sunglasses. In Malawi this included 9,731 pots of sunscreen, 2,620 wide brimmed hats, 20 umbrellas, 177 sunglasses, and 876 UV protective lip balms.

Since the start of the phase II SCPP project in July 2021, a combined total of 122,427 sun protective items have been distributed to persons with albinism across Tanzania and Malawi. This includes 25,183 wide brimmed hats which were manufactured locally by tailors with albinism at the Standing Voice Umoja Training Centre in Tanzania, and distributed free through the SCPP clinical network. During 2023 we scaled up production and exportation of hats to Malawi.

~~Photo: A girl wears a locally made sun hat distributed to p~~ eople with albinism through the skin cancer prevention programme in Tanzania and Malawi 27

4.7 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 2023 we printed 14,195 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. 9,600 of these were for distribution in Tanzania and 4,395 in Malawi. Whilst 200 were for distribution in other African countries.

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

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----- Start of picture text -----
Total educational resources printed: 14,195
12,000
Educational Resources Tz Mw Other Total
Understanding Albinism
Booklet [8,000] 4,000 0 12,000
Moon Shining Bright
Picture Book [500] 0 0 500
Educational Resources Teacher training booklet 1,000 0 0 1,000
printed in 2023
Manual of best practice 100 100 200 400
Human Rights booklets 0 295 0 295
Total 9,600 4,395 200 14,195
295
400 Understanding Albinism Booklet
Moon Shining Bright booklet
1,000 Teachers' Booklet
Manual of Best practice
500 Human rights booklets
----- End of picture text -----

During 2023 resources were disseminated through dermatology and vision clinics, counselling sessions, training events, and directly in schools. They included:

. Throughout 2023 we screened a range of educational films about albinism and human rights during advocacy events and in waiting areas at vision clinics. These films included an animated adaptation of children’s story book called Moon, Shining Bright!, developed by Inside the Same – 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 - we also screened Surviving the Sun, a short documentary charting the Skin Cancer Prevention Programme co produced by Standing Voice and the Fondation Pierre Fabre.

. 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 are playing a critical role in enabling thousands of people with albinism to take charge of their health and claim their rights.

28

Siyajali Magenge, Kigoma, Tanzania

29

4.8 Community Knowledge

Indicator Tanzania Malawi Total
Number of awareness sessions 394 243 637
Number of patients and their relatives present at awareness sessions 12,557 4,733 17,290
Number of communication tool(s) used for the general public 4 5 9
Number of communication tool(s) distributed in the form of a brochure 10,249 2,507 12,756
Number of community advocate training events 7 5 12
Number of ‘community advocates’ trained 165 130 295

During the last 12 months the SCPP delivered 637 health awareness sessions across Tanzania and Malawi, to an audience of 17,290 people, including patients, their friends, families, teachers and community representatives. In Tanzania, 394 sessions were delivered to an audience of 12,557 people, with an average of 1.6 awareness sessions per clinic. In Malawi, we delivered 243 sessions to an audience of 4,733 people, with an average of 1.7 sessions per clinic. We also distributed a total of 10,249 and 2,507 education booklets to people with albinism in Tanzania and Malawi respectively.

During 2023, 7 Community Advocate Training events were delivered across 4 new regions of Tanzania (Mbeya, Iringa, Ruvuma and Ngombe), and 5 training events were delivered across 5 new districts of Malawi (Ntcheu, Dedza, Zomba, Chikwawa, and Chiradzulu). These workshops targeted health professionals and support staff such as 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 295 people were trained during 2023.

~~A mother departs hospital protecting her child fr~~ om the sun using an 30 umbrella she was given during a Skin Cancer Prevention Clinic

4.9 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 2023 we delivered 29 stakeholder engagement workshops (24 in Tanzania and 5 in Malawi). Each workshop took place prior to launching new SCPP clinical services in new regions and 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. 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 Society (TAS) and Association of Persons with Albinism in Malawi (APAM).

This year we delivered training to 241 health personnel; 64 of these were in Tanzania and 177 in Malawi. Trainees included Dermatology Officers, Surgical 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 or theatre based training days for Dermatology and Surgical Officers.

In December, as part of our clinical training we delivered a week-long Surgical Camp in Malawi. Training was led by Irish Plastic Surgeon Dr Patricia Eadie, Standing Voice Advisory Board member and GP Dermatologist Dr Mark Wheeler, Malawian Plastic Surgeons Dr Tilende Chokotho, Dr Daniel Getachew and Dr Bright from Queens Central Hospital. The event trained 14 Surgical Officers. In addition 22 people with albinism received life saving skin cancer surgery, and 3 people received palliative support and counselling. The Surgical Camp was also supported by 9 hospital support staff from Phalombe District Hospital (including nurses, theatre and ward staff), and 6 staff from Standing Voice Malawi.

Across all our training initiatives delivered in 2023 we strengthened the capacity of 336 key duty bearers in Tanzania and 307 in Malawi.

31

~~Photo: Trainee Clinical Ofcers practice performing surgical excisions using skin pad~~ s

The table below shows the large number of actors working across the programme. Today there are 2,034 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 41
25
66
Albinism Association leaders 276
136
412
Social Welfare Ofcers & Health Surveillance Assistants 171
96
267
Other health personnel: Clinicians, Medical Assistants, Nurses, Surgeons,
Histopathologists
228
317
545
Regional & District Medical Ofcers 114
17
131
First responders / counsellors 22
28
50
Optometrists 19
-
19
Special Education Ofcers (Regional & District) 114
-
114
Teachers 388
-
388
Tailors 17
-
17
Pharmacists 8
17
25
Total 1,398
636
2,034

32

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 and Education Programme (VEP) is conducted in partnership with the Government of Tanzania and a range of civil society actors. As of Dec 31st 2023, there were 3,877 people with albinism registered in the VEP across 11 regions of Tanzania, and the programme will expand to Malawi in 2024.

Student - Mara Region

33

5.1 Key Achievements in 2023

Total people with albinism supported:

2,725

The Vision Programme delivered seven large-scale eye clinics in 2023, serving 2,735 people with albinism. Patients were mobilised from across eleven regions in Tanzania, which included Mwanza, Arusha, Dar es Salaam, Dodoma, Tabora, Singida, Shinyanga, Ruvuma, Ngombe, Kilimanjaro and Pwani. All patients received a one-to-one consultation and eye examination, education on albinism and visual impairment, and resources and devices to support the management of low vision in daily life.

Total assistive vision devices distributed: 10,717

Throughout 2023, we distributed 10,717 assistive devices including 1,870 pairs of prescription glasses, 5,483, pairs of sunglasses, 1,523 monocular telescopes, 1,744 glasses cases and 97 dome magnifiers.

Teachers trained: 102

Throughout 2023, the Standing Voice Team delivered specialist training on albinism and inclusive education for 102 teachers across 12 schools in Tanzania. In each of these schools, our staff conducted ‘barazas’ and parades to build knowledge of albinism across the student body.

Students reached through seminars and school outreach 28,572

In addition to eye clinics, we coordinated awareness and understanding albinism seminars in schools across Tanzania. During these events special talks were delivered 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 1,431 students with albinism while delivering wider sensitisation to 28,572 students across 46 schools (including the 12 schools we trained teachers in during 2023). Alongside these inspirational talks, we run talent competitions with prizes, interactive seminars, book readings, and film screenings. This year schools and students across Ukerewe Island were invited to visit the Umoja Training Centre where they received further training on albinism, alongside access to our community library stocked with Swahili and English books.

Please see the 2023 Annual Vision Programme Report for a detailed update of the programmes impact this year.

glasses I can ~~fnally keep up with my colleagues. It~~ ’ ~~s made a big diference to both my confdence~~ and school work” Student - Pwani Region

34

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 2023
Male
Female
Total
25
19
44
31
27
58
Primary
Secondary
Teachers Trained
56.9%
43.1%
Primary
Secondary
Teachers Trained
45.1%
54.9%
Male
Female
Total
56
46
102		 Total

Throughout 2023, Standing Voice partnered with 12 schools across four regions of Tanzania to provide specialist training for 102 teachers. 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 12 schools developed and implemented tailored action plans to improve the educational participation and welfare of students with albinism. Remedial measures have included:

35

Through the implementation of these measures and promotion of greater understanding of the rights and needs of people with albinism across these 12 schools, we estimate that 5,500 students and an additional 11,000 family members will be 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.

Also in 2023 we were able to secure the donation of 3 large screen video magnifiers from the US that were donated to selected schools to support students with albinism in their final years of education.

Teacher

ensure the next generation do not face the same challenges I did”

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Dr Abdi Nyembo, Head of Optometry and Training

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 were 17 optometrists trained during 2023 of which 5 were new to the programme. A total of 19 Optometrists now support the deliver of the VEP in Tanzania.

As part of this ongoing initiative, we held a training workshops for Optometrists in Arusha in August and Mwanza in October. This included 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. In Mwanza in October we were delighted to be joined by Dr Rebecca Kammer, a world-leading expert in the low vision of people with albinism and long-term strategic advisor and director of the Vision Programme. We also extend our thanks to Professor Susan Primo, Director of Optometry and Vision Rehabilitation Services at the Emory Eye Center and Professor of Ophthalmology at the Emory University School of Medicine. Susan joined our team to support training in Arusha this year 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. As of December 2023 Standing Voice has documented 819 human rights violations against persons with albinism in Africa. 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. In 2023 violent attacks against people with albinism in Malawi continued to escalate, with a string of attempted abductions and grave violations reported in southern and central districts of the country. 1 in 6 people with albinism living in Machinga District of Malawi have been victim to attack.

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

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217
38
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MALAWI

217 human rights violations

reported against people with albinism since 2006

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17

14 15 13 4 4 5 4

Most recent attacks:

3rd September 2023

attempted abduction of a one-year old boy with albinism in Lilongwe district, Malawi

5th July 2023

attempted attack against a 12-year old girl with albinism in Dowa district, Malawi

TANZANIA

205 human rights violations

reported against people with albinism since 2006

Unknown locations 16

4

4

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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 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 team has spent the last three years undergoing a programme of training with Dr Mark Fish, a worldleading expert in trauma recovery and 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 2023 included:

6.2 Albinism Helpline

Indicator Tanzania Malawi
Regions where people with albinism have access to a helpline 20 17
Calls received through helpline 2,269 910

In 2023 we continued to develop and operate two dedicated toll-free helplines, available to people with albinism and their families to report incidents of abuse and share any concerns about their health, welfare or security. Our 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 to life is identified. The helpline is accessible to people with albinism across 20 regions of Tanzania and 17 districts of Malawi.

Since its establishment in 2021, our helplines have received 2,269 calls in Tanzania and 910 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.

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6.3 Advocacy and Access to Justice

To help protect people with albinism from discrimination and violence we have worked hard to raise awareness, build greater understanding about albinism in communities, and create a climate where rights of persons with albinism are recognised and respected at local, national and global levels.

In 2023 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 aimed at building a society equipped to improve access to services, promote social inclusion and report abuses. To achieve this objective we continued to deploy a broad spectrum of activities including educational seminars, assemblies, workshops, parades, 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 .

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6.4 Counselling and Emergency Tailored Support

Indicator Tanzania Malawi
Regions / districts where PWA have access to counselling at clinics 3 4
PWA with access to counselling service at clinics 1,871 665
People counselled through peer-to-peer counselling at clinics 152 152
Number of clinics with Counselling delivered 36 32
PWA receiving tailored and emergency support 108 49

During 2023 we continued to expand peer counselling at Dermatology clinics throughout Tanzania and Malawi, providing safe and confidential spaces for people with albinism and their families to speak freely about their needs and concerns, process trauma, build confidence and access referral for specialist services where required. By the end of 2023, counselling was accessible to 1,871 people with albinism across three regions of Tanzania and to 665 people in four districts of Malawi. Across both countries a total of 304 individuals received counselling during the reporting period via delivery of 68 clinics. Of the 152 people visiting counselling stations during 2023 in Tanzania 82% were female. Of the 152 clients who received counselling at clinic in Malawi during 2023 58% were female.

For the most vulnerable people we work with – 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. Across both countries 157 people with albinism received tailored support during 2023. This included ongoing support to 22 survivors of attack and 21 of their family members,

During 2023 this area of our was funded by the United Nations Voluntary Fund for Victims of Torture, the European Commission and Foundation Pierre Fabre.

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➡ 1 in 6 PWA in Machinga Malawi have been victim to attack
➡ 62% of survivors we are working with are under 15 years old
➡ 50% of our highest risk survivors are under 10 years old
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6.5 Livelihoods Training and Art Therapy

Indicator Tanzania People with albinism receiving ongoing skills development or income generation support 58 Community members benefitting from the Umoja Training Centre (UTC) 29,822 Number of school children reached by the UTC 46 UTC tailors trained 18 Hats produced by UTC tailors 13,350 Hats produced since initiative begun (2021) 25,183

In 2014, Standing Voice established 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 2023, the UTC continued to support the capacity development of a wide range of community groups and 58 individual trainees with albinism and their families. Disciplines included tailoring, soap-making, batik, photography, radio production, music, and the performing and visual arts. 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 13,350 wide-brimmed hats for distribution for free to people with albinism through 206 hospitals and health centres engaged in the delivery of the Skin Cancer Prevention Programme in Tanzania and Malawi. During 2023 a total of 29,822 community members from across Ukerewe Island befitted from the UTC and its community development activities.

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Activities at the UTC include group therapy, a community library and garden, tailoring,
soap making, batik, radio production, photography, art, music and drama
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6.6 Human Rights Training

A key aim of our social protection and welfare programme 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 delivery of workshops and equational clinic based seminars, 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. During 2023 this support was extended in Malawi through the support of the European Commission and the dleibver of our Ufulu Wanga Project in collaboration with YONECO and Beyond Sincere.

People with albinism and family members participating in rights-based training: 13,320

Operating through dermatology clinics, the First Response Team delivered 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 raises awareness of best practices for protecting and empowering families impacted by albinism.

By the end of 2023, 13,320 people had received this right-based training at clinics 12,577 of these were in Tanzanian 743 in Malawi.

Albinism Advocates trained: 295

In 2023, through our partnership with the Foundation Pierre Fabre and the European Commission we trained a network of community based albinism advocates to mobilise, monitor and support the most at-risk people with albinism at the community level. These advocates include albinism association leaders, social welfare professionals and community health workers, many of whom are already engaged in the SCPP and play a critical role in the identification, mobilisation and management of patients in between clinic cycles.

During the reporting period 295 Albinism Advocates were trained and equipped to support and advocate for the rights of persons with albinism in communities across Tanzania and Malawi.

➡ A group of albinism advocates following a training event in Ntcheu, Malawi

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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 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 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.

During 2023, the Women’s Albinism Action Group delivered counselling, training and community outreach to build knowledge and debunk myths about albinism in schools, health centres, and a variety of community settings, sensitising 5,771 people. In addition to the Standing Voice helpline, the WAAG also operates its own dedicated helpline to support women and girls impacted impacted by albinism and has supported 795 callers to date. The WAAG has reached 12,205 people through its work since 2021.

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7. SPECIAL EVENTS

This year we have been very active in advocating for the rights and needs of people with albinism around the world. Throughout 2023 Standing Voice leadership teams were invited to present its work during workshops, international conferences and symposiums.

In February 2023 our team in Tanzania and Malawi joined a Human Rights workshop organised and hosted by the African Albinism Network (AAN) in Dar es Salaam, attended by albinism organisations and human rights defenders from 14 African countries. The training focused on building awareness of the effective use of the AU Plan of Action on Albinism, human rights advocacy, and reporting strategies to develop and domesticate the Plan of Action into National Action Plans on Albinism. In March SV Malawi joined a National Engagement Meeting on Albinism in Lilongwe convened by the Government of Malawi and attended by key actors working on albinism in the country. Also in March we welcomed the European Union Ambassador to Malawi his Excellency Rune Skinnebach and Deputy Minister of Health Hon. Hakima Daudi in Dedza, Malawi to officially launch the start of our new EU funded project Ufulu Wanga (Our Rights). In June, to commemorate International Albinism Awareness Day (IAAD) we held special events across Tanzania, Malawi and the UK. This included delivery of free dermatology and low vision screenings in Ruvuma in Tanzania, and Dowa in Malawi. In June, also to mark IAAD Standing Voice was proud to support the Lazarus Music Festival. Bonface Massah, SV Malawi Executive Director joined Lazarus and his team as they travelled across four districts of Southern Malawi to raise awareness about albinism and bring Lazarus’s music to the people. Bonface joined Lazarus on stage to speak about albinism and the work of SV. On the 10th October Bonface joined a meeting of SADC to validate a framework for the Effective Cross Border Policing of Crimes against Persons with Albinism by the Southern African Development Community (SADC). In November, Bonface travelled to Namibia to commemorate National Albinism Day and lead part of a Stakeholder Engagement and Learning Forum to support the Development of the National Action Plan for Persons with Albinism in Namibia. On the 5th December, as part of a special Disability Inclusion event hosted by the French Embassy in Dar es Salaam Tanzania, Alex Magaga, SV Tanzania Operations Manager joined Christophe Przybylski, the Scientific Director of the Foundation Pierre Fabre to present on our joint programme to mark International Day of people with disabilities. On the 19th December Bonface Massah, SV Malawi ED was invited to the EU Delegation in Malawi to give a 10 minute oral presentation on ‘The State of Human Rights in Malawi’ to Members of the EU Parliament - Committee on International Relations.

We also held press events and celebrations to mark Skin Cancer Awareness Month and World Sight Day. Throughout the year our projects 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. These events were documented on radio and TV stations across Tanzania and Malawi.

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8. DATA MANAGEMENT

In 2023 we conducted several activities to further develop our data collection tools and strengthen the roll out of our custom built electronic health information system across both countries. During the reporting period the system was active and supporting delivery of all SCPP and VEP heath services across Tanzania and Malawi, as well as supporting a albinism programme in Rwanda. In August we welcomed partners Source of the Nile for Persons with Albinism from Uganda to Tanzania where we showcased the database with the aim supporting SNUPA to develop their data management in Uganda in 2024.

During 2023 we designed new tools to support the Welfare programme, including delivery of risk assessments at clinics. These new tools underwent field tested on paper throughout the year and will undergo transition to our electronic data capture system (Commcare) in 2024. During the reporting period we purchased 40 new tablets to support the ongoing expansion of health services scheduled over the next 2 years.

In both countries, we delivered further training to health professionals in the use of our data management system. These individuals included Dermatologists, Dermato-Venereology Officers, Clinical Officers, Medical assistants, Optometrists and SV staff. Today, there are 151 personnel actively using the system in the field.

No. of people trained
Tanzania 69
Malawi 82
Total 151

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Standing Voice Report of the Trustees 1st January 2023 - 31st December 2023

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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

Throughout 2023 we were proud to be funded by many innovative Foundations and Trust funds including the Foundation Pierre Fabre (FPF), the European Commission (EU), the International Foundation for Dermatology (IFD), the International League of Dermatological Societies (ILDS), the United Nations Voluntary Fund for Victims of Torture (UNVFVT), Deloitte Community Fund, University off Cambridge, the Sir Halley Stewart Trust, the Bilton Foundation, the John Armitage Charitable Trust (JACT), the HCD Memorial Fund, Inside the Same, The Edge, Mite, Wings of Support, Free A Girl, Esther Ireland, the Evan Cornish Foundation, the Souter Charitable Trust, African Albinism Foundation, the Reed Foundation 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 2023 to 31st December 2023 amounted to £1,192,750 (January 2022-December 2022: £911,951). Voluntary income was £1,184,639 (2022: £911,875). Of the total income, £1,110,711 (2022: £822,199) was restricted and £82,040 (2022: £89,752) was unrestricted. The restricted income consists of donated funds from grant funders and individuals. £484,658 (2022: £377,112) of restricted funding was carried forward. Unrestricted income was mainly from individual donations.

Expenditure amounted to £1,070,753 (2022: £777,946) of which £1,008,458 (2022: £715,371) was project expenditure, £47,505 (2022: £56,600) was fundraising expenditure and £14,790 (2022: £5,975) was governance costs. Of the total expenditure, £1,003,165 (2022: £706,978) was restricted expenditure and £67,588 (2022: £70,968) 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.

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Standing Voice Report of the Trustees 1st January 2023 - 31st December 2023

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At the end of the financial year ending 31st December 2023 the charity carried forward a balance of £559,467 (2022: £437,470), of which £139,897.83 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 2024 amounting to over £1,260,000.

EXPENDITURE SUPPORTING KEY OBJECTIVES

Standing Voice has been able to increase expenditure towards its life saving programmes in 2023 to £1,008,458. This has been vital at a time when our clients’ needs are under pressure due to unstable global economic conditions, increasing risk of climate change-related disasters, and continued threat of attack against people with albinism. This increase in project expenditure (a £293,087 increase on 2022) has been carefully planned and deemed viable based on holding and securing new multi-year funding partnerships in 2023. 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 we are building a sustained, scalable and 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 being delivered 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 further advancing integration in society in 2023.

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Standing Voice Report of the Trustees 1st January 2023 - 31st December 2023

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10. GOVERNANCE AND RISK

FUTURE PLANS OF THE CHARITY

In 2024, we will continue to expand the geographical reach of the Skin Cancer Prevention and Vision and Education Programmes 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.

Through our long running partnership with the Foundation Pierre Fabre we will continue adapting our dermatology programme to allow for further phasing in and scale up of other complimentary services at clinics, specifically further expansion of psychosocial support and counselling, and strengthening of our toll-free albinism helplines. In Malawi the inclusion of these other forms of support will continue to be cofunded by the United Nations Voluntary Fund for Victims of Torture and the European Commission. By the end of 2024, counselling will be available at Dermatology clinics across three regions of Tanzania and eight districts of Malawi.

In 2024 we will enter the second year of our EU funded Ufulu Wanga Project. As well as supporting the continued scale up of dermatology, security and psychosocial support services in Malawi, next year the project will begin a community theatre and radio awareness campaign delivered in communities across Malawi in partnership with Theatre For Change, YONECO and Beyond Suncare.

Also in 2024 we will launch a new three year partnership with the Croda Foundation, who alongside our long-term funder and technical partner the Foundation Pierre Fabre they will co-fund the expansion of the Skin Cancer Prevention Programme in Tanzania with the aim of achieving national coverage by 2027.

During 2024 the expansion of our work across Tanzania and Malawi, will be combined with 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 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 2023 - 31st December 2023

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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:

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Sabine Zetteler Chair of the Board of Trustees 28/04/2023

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Standing Voice Report of the Trustees 1st January 2023 - 31st December 2023

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11. ACCOUNTS

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

Opinion

We have audited the financial statements of Standing Voice (UK) (the ‘CIO’) for the year ended 31 December 2023 which comprise the Statement of Financial Activities, the Balance Sheet, Statement of Cash Flows and notes to the financial statements, including a summary of significant accounting policies. The financial reporting framework that has been applied in their preparation is applicable law and United Kingdom Accounting Standards, including Financial Reporting Standard 102 The Financial Reporting Standard applicable in the UK and Republic of Ireland (United Kingdom Generally Accepted Accounting Practice).

Basis of opinion

We conducted our audit in accordance with International Standards on Auditing (UK) (ISAs (UK)) and applicable law. Our responsibilities under those standards are further described in the Auditor’s responsibilities for the audit of the financial statements section of our report. We are independent of the CIO in accordance with the ethical requirements that are relevant to our audit of the financial statements in the UK, including the FRC’s Ethical Standard, and we have fulfilled our other ethical responsibilities in accordance with these requirements. We believe that the audit evidence we have obtained is sufficient and appropriate to provide a basis for our opinion.

Conclusions relating to going concern

In auditing the financial statements, we have concluded that the trustees’ use of the going concern basis of accounting in the preparation of the financial statements is appropriate.

Based on the work we have performed, we have not identified any material uncertainties relating to events or conditions that, individually or collectively, may cast significant doubt on the charity’s ability to continue as a going concern for a period of at least twelve months from when the financial statements are authorised for issue.

Our responsibilities and the responsibilities of the trustees with respect to going concern are described in the relevant sections of this report.

Other information

The trustees are responsible for the other information. The other information comprises the information included in the trustees’ report, other than the financial statements and our auditor’s report thereon. Our opinion on the financial statements does not cover the other information and, except to the extent otherwise explicitly stated in our report, we do not express any form of assurance conclusion thereon.

In connection with our audit of the financial statements, our responsibility is to read the other information and, in doing so, consider whether the other information is materially inconsistent with the financial statements or our knowledge obtained in the audit or otherwise appears to be materially misstated.

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Standing Voice Report of the Trustees 1st January 2023 - 31st December 2023

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If we identify such material inconsistencies or apparent material misstatements, we are required to determine whether there is a material misstatement in the financial statements or a material misstatement of the other information. If, based on the work we have performed, we conclude that there is a material misstatement of this other information, we are required to report that fact.

We have nothing to report in this regard.

Matters on which we are required to report by exception

We have nothing to report in respect of the following matters in relation to which the Charities (Accounts and Reports) Regulations 2008 require us to report to you if, in our opinion:

Responsibilities of trustees

As explained more fully in the trustees’ responsibilities statement in trustees’ report, the trustees are responsible for the preparation of financial statements which give a true and fair view, and for such internal control as the trustees determine is necessary to enable the preparation of financial statements that are free from material misstatement, whether due to fraud or error.

In preparing the financial statements, the trustees are responsible for assessing the CIO’s ability to continue as a going concern, disclosing, as applicable, matters related to going concern and using the going concern basis of accounting unless the trustees either intend to liquidate the CIO or to cease operations, or have no realistic alternative but to do so.

We have been appointed as auditor under section 144 of the Charities Act 2011 and report in accordance with regulations made under section 154 of that Act.

Our objectives are to obtain reasonable assurance about whether the financial statements as a whole are free from material misstatement, whether due to fraud or error, and to issue an auditor’s report that includes our opinion. Reasonable assurance is a high level of assurance, but is not a guarantee that an audit conducted in accordance with ISAs (UK) will always detect a material misstatement when it exists. Misstatements can arise from fraud or error and are considered material if, individually or in the aggregate, they could reasonably be expected to influence the economic decisions of users taken on the basis of these financial statements.

Irregularities, including fraud, are instances of non-compliance with laws and regulations. We design procedures in line with our responsibilities, outlined above, to detect material misstatements in respect of irregularities, including fraud. The extent to which our procedures are capable of detecting irregularities, including fraud is detailed below:

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A further description of our responsibilities for the audit of the financial statements is located on the Financial Reporting Council’s website at: www.frc.org.uk/auditorsresponsibilities. This description forms part of our auditor’s report.

Use of our report

This report is made solely to the CIO’s trustees, as a body, in accordance with Part 4 of the Charities (Accounts and Reports) Regulations 2008. Our audit work has been undertaken so that we might state to the CIO’s trustees those matters we are required to state to them in an auditor’s report and for no other purpose. To the fullest extent permitted by law, we do not accept or assume responsibility to anyone other than the CIO and the CIO’s trustees as a body, for our audit work, for this report, or for the opinions we have formed.

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Knox Cropper LLP Statutory Auditor 65 Leadenhall Street London EC3A 2AD

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Knox Cropper LLP is eligible for appointment as auditor of the charity by virtue of its eligibility for appointment as auditor of a company under section 1212 of the Companies Act 2006.

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11.2 Statement of Financial Activities (SoFA)

Statement of Financial Activities (Incorporating an Income and Expenditure Account) for the period ended 31 December 2023:

Notes
Unrestricted
funds (£)
Restricted
income funds (£)
Total
2023 (£)
Total
2022 (£)		 Notes
Unrestricted
funds (£)
Restricted
income funds (£)
Total
2023 (£)
Total
2022 (£)		 Notes
Unrestricted
funds (£)
Restricted
income funds (£)
Total
2023 (£)
Total
2022 (£)		 Notes
Unrestricted
funds (£)
Restricted
income funds (£)
Total
2023 (£)
Total
2022 (£)		 Notes
Unrestricted
funds (£)
Restricted
income funds (£)
Total
2023 (£)
Total
2022 (£)
Income and endowments from:
Donations and legacies
Other trading activities
Income from investments
Income from charitable activities
Other income
73,928
-
3,111
-
5,000		 1,110,711
-
-
-
-		 1,184,639
-
3,111
-
5,000		 911,875
-
76
-
-
Total income and endowments 2 82,039 1,110,711 1,192,750 911,951
Expenditure on:
Raising funds 2,375
50,423
14,790		 45,130
958,035
-		 47,505
1,008,458
14,790		 56,600
715,371
5,975
Charitable activities
Other expenditure
Total expenditure 3 67,588 1,003,165 1,070,753 777,946
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		 14,451
14,451
-
-		 107,546
107,546
-
-		 121,997
121,997
-
-		 134,005
134,005
-
-
Net income/(expenditure) and
movement in funds for the year
Total funds brought forward		 14,451
60,358		 107,546
377,112		 121,997
437,470		 134,005
303,465
Total funds carried forward 74,809 484,658 559,467 437,470

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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11.3 BALANCE SHEET

Balance Sheet as at 31 December 2023

Notes
Unrestricted
funds (£)
Restricted
income funds (£)
December
2023 (£)
December
2022 (£)		 Notes
Unrestricted
funds (£)
Restricted
income funds (£)
December
2023 (£)
December
2022 (£)		 Notes
Unrestricted
funds (£)
Restricted
income funds (£)
December
2023 (£)
December
2022 (£)		 Notes
Unrestricted
funds (£)
Restricted
income funds (£)
December
2023 (£)
December
2022 (£)		 Notes
Unrestricted
funds (£)
Restricted
income funds (£)
December
2023 (£)
December
2022 (£)
Fixed assets
Tangible investments
4
Intangible investments
- 29,507 29,507 7,932
Total fxed assets - 29,507 29,507 7,932
Current assets
Debtors and prepayments
5
Cash at bank and in hand
25,519
72,344		 -
470,697		 25,519
543,041		 100,474
366,409
Total current assets 97,863 470,697 568,560 466,883
Liabilities
Creditors: amounts falling due
within one year
6
Net current assets/(liabilities)
(23,054)
74,809		 (15,546)
455,151		 (38,600)
529,960		 (37,345)
429,538
Total assets less current
liabilities		 74,809 484,658 559,467 437,470
Creditors: amounts falling due
after one year
Provisions for liabilities and
charges		 -
-		 -
-		 -
-		 -
-
Net assets 74,809 484,658 559,467 437,470
Funds of the charity
Unrestricted funds
Restricted income funds
7
Endowment funds
74,809
-
-		 -
484,658
-		 74,809
484,658
-		 60,358
377,112
-
Total funds 74,809 484,658 559,467 437,470

The financial statements were approved and authorised for issue by the Trustees on 28/04/2024 and signed on their behalf by:

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Gurmeet Kaur

Treasurer of the Board of Trustee

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11.4 BASIS OF PREPARATION

Basis of preparation and accounting policies for year ended 31 December 2023

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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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 2023 (£)
2022 (£)		 2023 (£)
2022 (£)
Donations and Legacies Restricted income
Unrestricted income		 1,110,711
73,928		 822,199
89,676
1,184,639 911,875
Other trading activities
Income from investments
Other income		 -
3,111
5,000		 -
76
-
Bank interest
Total income and endowments 1,192,750 911,951

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3. ANALYSIS OF RESOURCES EXPENDED

Analysis Analysis 2023 (£)
2022 (£)		 2023 (£)
2022 (£)
Costs of generating voluntary
income		 Staf costs
Support costs		 37,299
10,206		 44,057
12,543
47,505 56,600
Charitable activities Staf costs
Support costs
Direct project costs		 149,196
40,823
818,439		 102,800
29,266
583,305
1,008,458 715,371
Governance costs Independent examiner’s fee
Accounting advice & payroll services
Trustees’ expenses
Trustee meeting		 12,840
1,950
-
-		 1,320
4,655
-
-
14,790 5,975
Total 1,070,753 777,946

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 2023
Additions
Disposals
-
-
-		 -
-
-		 14,608
31,594
-		 -
-
-		 14,608
31,594
-
At 31 December
2023		 - - 46,202 - 46,202
Depreciation
At 1 January 2023
Charge for the year
Disposals
-
-
-		 -
-
-		 6,676
10,019
-		 -
-
-		 6,676
10,019
-
At 31 December
2023		 - - 16,659 - 16,659
Net Book Value
At 31 December
2023		 - - 29,507 - 29,507
At 1 January 2023 - - 39,526 - 39,526

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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 (£)
2023
2022
2023
2022
Trade debtors
Amounts due from subsidiary and associated
undertakings
Other debtors
Prepayments and accrued income		 -
-
-
25,519		 -
13,651
-
86,823		 -
-
-
-		 -
-
-
-
Total 25,519 100,474 - -

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 (£)
2023
2022
2023
2022
Loans and overdrafts
Trade creditors
Amounts due to subsidiary and associated undertakings
Other creditors
Accruals and deferred income		 -
-
-
7,014
31,586		 -
-
-
3,797
33,548		 -
-
-
-
-		 -
-
-
-
-
Total 38,600 37,345 - -

7. RESTRICTED FUNDS

Fund Name
Purpose and Restrictions		 Fund Name
Purpose and Restrictions
Skin Cancer Prevention Skin cancer prevention services for people with albinism in Tanzania and Malawi
Research Research into access to health for people with albinism in Tanzania
Awareness Raising Creating and promoting positive imagery of people with albinism in Africa to raise
awareness
Vision and Education
Programme		 Low Vision services and promotion of education for people with albinism in
Tanzania and Malawi
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
Welfare Programme Psychosocial support and material assistance for survivors of abuse

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Movement of major funds:

Fund names
Skin Cancer Prevention
Research
Awareness Raising
Vision and Education
Programme
Umoja Children’s Centre
Malawi Operations
Welfare Programme
Core Costs
Total Restricted Funds		 Fund
balances
brought
forward 1
January
2023 (£)
Restricted
Incoming
resources
(£)
Restricted
outgoing
resources
(£)
Transfers
(£)
Gains and
losses (£)		 Fund
balances
brought
forward 1
January
2023 (£)
Restricted
Incoming
resources
(£)
Restricted
outgoing
resources
(£)
Transfers
(£)
Gains and
losses (£)		 Fund
balances
brought
forward 1
January
2023 (£)
Restricted
Incoming
resources
(£)
Restricted
outgoing
resources
(£)
Transfers
(£)
Gains and
losses (£)		 Fund
balances
brought
forward 1
January
2023 (£)
Restricted
Incoming
resources
(£)
Restricted
outgoing
resources
(£)
Transfers
(£)
Gains and
losses (£)		 Fund
balances
brought
forward 1
January
2023 (£)
Restricted
Incoming
resources
(£)
Restricted
outgoing
resources
(£)
Transfers
(£)
Gains and
losses (£)		 Fund
balances
carried
forward 31
December
2023 (£)
1,145
-
50,239
8,801
208,508
567
771
107,081		 473,111
-
-
104,291
27,184
20,000
109,305
376,820		 457,368
-
-
116,685
97,601
19,895
54,205
257,411		 -
-
-
-
-
-
-
-		 -
-
-
-
-
-
-
-		 16,888
-
50,239
(3,593)
138,091
672
55,871
226,490
377,112 1,110,711 1,003,165 - - 484,658

8. UNITED NATIONS VOLUNTARY FUND FOR VICTIMS OF TORTURE

Grant income
2023 (£)		 Grant income
2023 (£)
P-1187-DA-22 40,196
Expenditure
2023 (£)
Salaries 10,770
Benefciary support and training 27,162
International travel -
National travel 1,139
Contribution to the Independent Examination of the
charity’s accounts		 1,125
Total amount (£) 40,196

9. DETAILS OF CERTAIN ITEMS OF EXPENDITURE

Trustee expenses
2023(£)
2022 (£)		 Trustee expenses
2023(£)
2022 (£)		 Trustee expenses
2023(£)
2022 (£)
Number of trustees who were paid expenses
Nature of the expenses		 -
-		 1
Bill payments
Total amount paid (£) - -

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Fees for examination of the accounts
2023 (£)
2022 (£)		 Fees for examination of the accounts
2023 (£)
2022 (£)		 Fees for examination of the accounts
2023 (£)
2022 (£)
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		 12,840
1,950		 1,320
3,696

Support costs:

Support Costs Type Fundraising
activity (£)		 Charitable Activity
(£)
Governance
Activity (£)		 Charitable Activity
(£)
Governance
Activity (£)		 Total Cost (£)
Building costs
Communications
Legal & professional
Other costs
Financial costs
Depreciation		 5,012
1,213
798
964
215
2,004		 20,047
4,851
3,193
3,855
861
8,016		 -
-
-
-
-
-		 25,059
6,064
3,992
4,819
1,076
10,020
Total amount (£) 10,206 40,823 - 51,029

10. GRANT-MAKING

Grants to individuals/institutions
Purpose for which grants made
31 Dec 2023
Total amount (£)		 Grants to individuals/institutions
Purpose for which grants made
31 Dec 2023
Total amount (£)		 31 Dec 2022
Total amount(£)
Health services / Skin cancer prevention treatments and
manufacturing of sunscreen		 - 6,000
Total amount (£) - 6,000

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

11. STAFF COSTS

Staf costs
2023 (£)
2022 (£)		 Staf costs
2023 (£)
2022 (£)		 Staf costs
2023 (£)
2022 (£)
Gross wages, salaries and benefts in kind
Employer’s National Insurance costs
Pension costs		 165,357
17,275
3,863		 136,148
7,513
3,196
Total staf costs 186,495 146,857

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Average number of full-time equivalent employees in the year
2023
2022		 Average number of full-time equivalent employees in the year
2023
2022		 Average number of full-time equivalent employees in the year
2023
2022
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)
2023 (£)
2022 (£)
Harry Freeland Governing document 56,667 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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