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2021-12-31-accounts

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for people whose
skin doesn’t work
we do
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Trustees’ Annual Report and Accounts 2021

Company registration number 4118259

Contents

Our vision

The trustees present the annual report (including the strategic report) for the year ended 31 December 2021.

A world where no one suffers with
Epidermolysis Bullosa (EB).
Our mission
Provide lifelong care, while seeking cures, for all
those affected/impacted by living with EB.
2 DEBRA Trustees’ Annual Report & Accounts 2021		 The DEBRA effect
4
What is EB
5
Strategic report
Our work – investing in a future free of EB
8
Welcome from our Chair of Trustees
10
Introduction from our CEO
11
Growing through challenging times
12
EB research
14
EB healthcare
20
Lifelong EB support
24
A global and collaborative approach
30
EB voices
34
How we raise our funds
38
Our stores
44
Our people
50
Safeguarding
56
Equality, Diversity & Inclusion
56
Charity overview, objectives & public benefit
57
Financial review
58
Principal risks & uncertainties
62
Going concern statement
64
Structure, governance & management
64
Trustees: statement of responsibilities
70
Auditor’s report
71
Financial statements
76
Statement of financial activities
78
Balance sheet
80
Statement of cash flows
82
Notes to the financial statements
83
Reference and administrative details
110
Abbreviations
111
www.debra.org.uk 3

The DEBRA effect

At DEBRA, we can’t change the future of Epidermolysis Bullosa (EB) in an instant. But we do know that an instant can help change the future of people on a life-long journey with EB.

We believe that anyone can effect change with one small action:

Let us never underestimate the simple things we can do to spread ripples of hope for people living with EB. Let us all take one small action to fight EB so that, one day, EB no longer has any fight left to give.

What is EB

Skin as fragile as a butterfly wing

EB, Epidermolysis Bullosa, is a complex and rare group of genetic skin conditions that cause the skin to tear and blister at the slightest touch. The name comes from ‘epiderm’ – the outer layer of skin, ‘lysis’ – the breakdown of cells and ‘bullosa’ – blisters. EB can impact the external skin and also internal linings e.g. mouth, throat, eyes, anus and organs.

Genetic condition

People living with EB have a faulty gene which means the skin cannot bind together so that any friction causes it to tear apart. Every person has two copies of each gene – one passed on from each parent. EB may be inherited as either dominant (only one copy of the gene is faulty) or recessive (both copies of the gene are faulty). Parents have a 50% chance of passing on a dominant form of EB to their child, whereas the chance of passing on a recessive form of EB drops to 25%. Both parents may carry the gene without knowing or displaying any symptoms.

Types of EB

There are at least 30 genetically distinct forms of EB . The four main types are EB Simplex (EBS) accounting for around 70% of patients, Dystrophic EB (DEB) 25%, Junctional EB (JEB) 5% and other rare types including Kindler Syndrome.

Layers of skin tear and blister

Symptoms vary from mild to severe depending on the type of EB. In its most severe forms, EB is fatal; even in its mildest forms it can cause lifelong disability and pain. Blisters continuously form and have to be drained and dressed daily, a painful process that can take several hours. The build-up of scar tissue can cause fingers and toes to fuse together. It can mean a higher risk of developing skin cancer.

Treatment

People living with EB may require treatment from a range of medical specialists aimed at symptom relief. The most common challenge amongst all types of EB is the pain and itching that occurs as a result of the blistering.

No cure

There are an estimated 5,000 people affected by EB in the UK and 500,000 worldwide. It is currently incurable.

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What is EB to me? Lucy’s story

To answer this, I must answer what it was, what it is now, and what it will be.

It was discovering the power of my mind and the power my words could carry. It was writing in the car ride to the children’s hospital before surgery the next morning, where I’d start to cry behind an oxygen mask as anaesthetic forced my mind to still. It was saying the name of my condition and finally understanding what it meant.

It was a happy childhood, one that people can’t quite believe was as happy as it was. It was an abundance of love pouring over me from my first steps. But it was also bandages from my toes to my fingers. It was my siblings going into the backyard because sometimes, you could hear me scream from every room. It was days and weeks missing school when all I wanted to do was learn.

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It was an abundance of love pouring over me from my first steps. But it was also bandages from my toes to my fingers.”

“

It was a dozen surgeries in less than a decade, and fear, and an understanding that I had to do a lot more than other teenage girls. It was an understanding of society, crying in my car after a woman told me I looked like I’d been mauled by a gorilla. It was friends and my puppy and horse riding. It was pride after I saw my words carry me across countries, with pictures of my scars plastered in the Daily Mail and Huffington Post as I boarded a flight for an education in London.

Now, I am 23 years older than I was meant to be. And here is what it is.

It is my mother and boyfriend fighting back sleep from hospital chairs as they wait to hear if I made it out of the operation. It is watching my scar tissue overtake my fingers, and rites of passage I didn’t plan for. It is being interviewed by a Scottish journalist from my hospital bed, an IV dripping pain medicine into my arm and laughing at the ridiculousness of it all.

“ It will be possible for me to say, sometime soon, due to the research DEBRA is doing, that I am Lucy, and I HAD EB.”

It is pointing and stares and bravery, exhaustion and joy, in the same hour. It’s photographers pointing lenses at my scars and resisting the urge to cover myself, hide my soul from them. It is making decisions for the sake of my body with a knowledge that I may be hurting it. It is causing myself pain to heal. It is every ounce of my strength and more, it is words untranslatable, and fear and love and hope.

It is a part of me. It is the force that made me who I am. It’s why I sat down to write this for you. My name is Lucy Beall Lott and I have recessive dystrophic Epidermolysis Bullosa. I am a student, an art historian, an archaeologist, a sister, a daughter. And I have EB. I always have. But as we know, many things can change in just a short amount of time.

What will it be? What will I be? I used to think of my future and feel small. But instead of feeling overwhelmed by fear of the future, I am now overwhelmed by the excitement of possibility. There are so many things I now know are possible. It is possible to write a speech for a Ted Talk in bed with wounds across your body, it is possible to write two dissertations while your pinky fuses to your ring finger, it is possible to live not despite your condition but with it.

It is possible to see the beauty in the world, in scars and tears and pain. A future for people with EB is possible. We can see it. It is almost here.

It will be possible for me to say, sometime soon, due to the research DEBRA is doing, that I am Lucy Beall Lott, and I HAD EB.

Lucy Beall Lott

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Our work

Investing in a future free of EB

DEBRA UK was the first organisation in the world established to focus on EB. We have a proud history and a dynamic present. We will see our mission to its end – we cannot, and will not, rest until we find the necessary treatments, and ultimately cures, for EB and all those living with it receive the care and support they need.

From discovering the first EB genes to funding the first clinical trial in gene therapy, we have played a pivotal role in EB research globally and been responsible for making significant progress in advancing diagnosis, treatment and daily management of EB.

We are committed to making sure that all of the 5,000 or more people with EB in the UK and their families and carers get the vital and wide-ranging support they need, supporting specialist healthcare and investing in life-changing research so that the devastating symptoms of EB can be reduced while we work towards a cure.

Making a difference in 2021

Collaborating with 60 EB healthcare EB research professionals 19 projects

Working with

4 national EB centres

4,300

support actions, calls, contacts and visits to people living with EB

3,000+

DEBRA members

£1.9 million

1,200

spent on research, healthcare & support benefiting the EB community

volunteers and staff

1.2 million kilos of goods recycled in our 105

charity shops

7th

5 million

largest charity retailer in UK

people reached on social media

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An ambitious five-year strategy Welcome from our Chair of Trustees

The devastating nature of EB continues to drive our determination to achieve our vision and end the suffering that EB brings. This means not only accelerating research to improve quality of life, but challenging ourselves and lobbying others, including Government, to leverage the significant funds that could bring forward the cure that every EB family dreams of.

We will empower and advocate for the EB community, building our knowledge through Quality of Life surveys to increase our engagement with members and help shape our services.

It means a step-change in our fundraising and our approach to finding individuals, organisations and government bodies to achieve what we have been working towards for over 40 years.

We want to ensure that DEBRA remains the ‘go to’ place for everything relating to EB. To achieve this, the key to our success is our people. We will prioritise learning and development for our staff and volunteers and increase access to specialist EB knowledge and information for all who support people living with EB.

We have developed an ambitious new strategy, with a clear vision for where we want to be in five years. We will return to and surpass prepandemic levels of investment and service by making our retail stores more profitable than ever, developing our online sales and building on fundraising and philanthropic opportunities.

A huge challenge is to make ‘EB’ a term that is understood by the masses and not the few. Achieving such a change will need investment but it will be worth it as the increased awareness will result in a deeper supporter base spreading further awareness and boosting our income along the journey.

“ We want to ensure that DEBRA

remains the ‘go to’ place for everything relating to EB. To achieve this, the key to our success is our people. ”

We will collaborate with national and international partners to improve delivery of specialist healthcare services and drive a programme of world-class, innovative and collaborative research that will bring hope and improved outcomes for everyone living with all types of EB.

Thank you to our EB community, the specialist healthcare professionals and researchers we work with, our customers, supporters, trustees, staff and volunteers. It is your commitment and support which has brought us this far and which will enable us to achieve our ambitious goals.

Jim Irvine Chair of Trustees

We’ll introduce schemes to nurture the next generation of EB researchers and bring new investment into EB research with a focus on drug repurposing to accelerate research progress.

Committed to the EB community Introduction from our CEO

Despite the challenges of the COVID-19 pandemic and the impact on our finances, we are in a position to exit the crisis strongly as a growing organisation. DEBRA receives no statutory government funding. The income we raise from our retail stores, online sales, from our fundraising activities and the generosity of our supporters is vital to enable us to deliver our charitable objectives – investing in EB research, healthcare and support.

As for so many of us worldwide, the effects of the pandemic over the past 24 months have been significant. Our incomegenerating potential was put under pressure with fundraising events on hold and our charity shops affected by lock-down closures. However, we have worked hard for many years to raise our levels of reserves and been prudent with our spending. This meant that despite facing highly challenging times this year, we still had the resources needed to deliver vital, front-line services. Our aim for 2022 is to increase our spending on both research and EB support services while we work towards our ambitious vision – ‘a world where no one suffers with Epidermolysis Bullosa (EB).’

enhanced nursing service ensuring that, despite some EB nurses being redeployed, patients continued to receive the vital medical attention they needed. We delivered online training and advice to maintain access to specialist expertise from EB healthcare professionals and our Community Support Team.

For over 40 years we have invested in pioneering EB research and healthcare. Throughout the past year we are proud to have been able to continue building partnerships both in the UK and internationally to further EB research and play a leading role in promoting EB knowledge and best practice for patients around the world.

At the heart of everything we do are the EB families, researchers and healthcare experts we support. I wish to thank our hardworking staff, volunteers,trustees and our supporters, without whom nothing would be possible. In another year of turbulence, your donations made sure people living with EB did not lose vital support at a time when they needed it most.

“

For over 40 years we have invested in pioneering EB research and healthcare. ”

For people with EB, the consequences of COVID-19 are concerning, particularly for those with more severe forms of the condition who may already have fibrosis of the airway tract and be experiencing compromised immunity. We remained committed to supporting the EB

Tony Byrne CEO

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Growing through challenging times

The COVID-19 pandemic has had a significant impact on our finances, however we are in a position to exit the crisis strongly as a growing organisation.

At the start of 2021 we faced the difficulties experienced by many charities across the country, with our stores closed, the majority of our staff furloughed, fundraising events cancelled and delivery of our services to the EB community restricted to virtual support.

The income raised through our network of charity shops and fundraising activities enabled us to continue to invest in EB research, specialist healthcare and to provide vital support for the EB community.

However, despite the challenges created by months of lockdown in 2021, our retail sales were 30% higher overall, with some stores outperforming 2019 sales and we undertook a successful development of online selling initiatives.

• We ensured EB patients and families were fully supported by our Community Support Team. We worked hard to ensure that all who needed our support were able to access us virtually or in person. We broadened the range of online sessions for our members including drop-in groups for parents and for teenagers to build social networks. We ensured access to specialist EB expertise with online sessions from EB dietitians, podiatrists, physiotherapists and other healthcare professionals.

We were able to hold events in the second half of the year and support from a number of new major donors enabled us to get our fundraising income back on track.

£1.9m spent on our charitable activities

How we raised our money

How we spent our money

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2% Other
20%
Public
26%
education
Research
35%
Fundraising
63%
Retail 13%
41% Healthcare
Community
support
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Thank you to our members, community support team, healthcare professionals, researchers, trustees, staff and volunteers, customers, trusts, companies and donors for the continued, committed support you have given to our charity and to the EB community.

We couldn’t have survived the past two years without you. Together we have made a difference and will continue to #FightEB until we have achieved our vision of a world where no one suffers with Epidermolysis Bullosa (EB).

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R E S E AR C H

EB research Changing lives

From gene discovery to cutting-edge clinical trials of therapies to control symptoms and manage complications like cancer, the research journey for EB over the past 40 years has been remarkable. During this time, we have invested over £20m and been responsible, through funding world-class, pioneering research and working internationally, for establishing much of what is now known about EB. We are the largest UK funder of EB research and consistently in the top 50 UK funders of research across all diseases and conditions.

Over £20m invested Across 12 countries

In 52 research institutions globally

In 134 research projects

What we did in 2021

The pandemic had a big impact on medical research charities including DEBRA. Some research projects were paused due the need to limit the number of people working in labs, however our commitment to research was unwavering. We continued to support all 19 existing research projects, providing funding of £836k in 2021 and allocated additional funding of £168k to new commitments.

Our grant portfolio, worth around £5m, included research into:

We are proud members of the Association of Medical Research Charities (AMRC). All projects undergo a thorough application and review process by a panel of medical and scientific experts (MSAP) guaranteeing that we only fund high-quality projects. This process ensures new research projects build on existing knowledge, which helps us to only invest in projects that give the best chance of breakthroughs leading to change.

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R ESEA R C H
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“

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R ESEA R C H

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R E S E AR C H
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Andy & Isla’s story

“ As a parent of a child living with EB, it is incredible to see that research that was science fiction when Isla was born is now part of the solution. Isla has faced many challenges with her pain and she is tired; she wants a cure, as do many others who suffer from this condition. This is an upsetting and painful fight to go through and to watch.

The EB scientific and medical community increasingly believe they can solve the puzzle, that they can and will cure EB. They increasingly know where they need to be heading and are working out how and what they need to get there.

My hope for EB research is to make what was once impossible, possible. ” I want a brighter future for Isla.

Andy & Isla Grist, DEBRA Members, Scotland

Looking ahead

Where once a parent struggled for information and help, diagnosis, support and information are now widely available and ground-breaking clinical discovery has led to breakthroughs in current and potential treatments and understanding of EB.

But patients with EB are still suffering from devastating symptoms – pain, itch, cancer, wounds that require hours of dressings and blisters that can lead to infection. The EB community is at the heart of all we do. Their voices drive our commitment to do more to increase our programme of world-class research and make what was once impossible, possible. We want a future where everyday treatments end the pain and suffering of people with EB and their children. Now is the time to accelerate the pace of discovery, reduce the pain and challenges of life with EB and save lives.

Breakthrough in research comes from supporting outstanding projects that encourage the best of talented clinicians and scientists. This means increasing our funding and driving a programme of worldclass, innovative and collaborative research that will bring hope and improved outcomes for everyone living with EB.

We will increase our funding and drive a programme of world-class, innovative and collaborative research that will bring hope and improved outcomes for everyone living with EB.

Patients and their family members through their own experiences are the experts on the impact of EB. Our new research strategy will be guided by a focus on impact and what matters to people living with EB.

Our ambition

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R E S E AR C H

How we will achieve it

Drug repurposing clinical trials

Drug discovery

Drug repurposing

vs

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Drug Repurposing (3 yrs)
4 – 8 years 5 – 7 years 1 – 2 years
Phase 1 Phase 2 Phase 3
Basic Drug Experiment Experiment Drug
in Clinical in Clinical in Clinical
Study Design in vitro in vivo Registration
Trials Trials Trials
Drug Discovery and Development
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We will prioritise investment in drug re-purposing to accelerate research progress and find treatments for EB.

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R ESEA R C H
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Karen & Simon’s story

Laboratory diagnosis is crucial in determining the type of EB and understanding how to treat and manage the condition. Our funding has helped establish a model EB diagnostics centre in London, which has made it possible to receive prenatal diagnostic testing if parents are at risk for passing on EB, ensuring a parental choice.

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H E A LT H C AR E

H EA LT H C A R E

EB healthcare Developing specialist services

We work with patients and the NHS to develop specialist EB healthcare services. We are dedicated to ensuring that everyone with EB has access to the best care and expertise from diagnosis onwards.

In 1987 we funded the first specialist EB DEBRA nurse. We now work in partnership with the NHS to deliver an enhanced EB healthcare service for people with all types of EB. We have invested in the development of the EB centres of excellence, fund clinical best practice guidelines and connect patients with the expert, specialist services they need across the UK.

Enabling EB healthcare teams to support over 2,000 EB patients each year.

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Gemma’s story

“

Our partnership with the NHS gives patients access to specialist EB expertise from healthcare professionals and EB dentistry and podiatry training to bring expert care locally.

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H E A LT H C AR E

What we did in 2021

Throughout the year the pandemic continued to affect healthcare services for EB. From September, our Community Support Team were able to attend clinics at Guys & St Thomas’ Hospital and home and school visits where there was a clear need.

Jess’s story

“ I’ve always suffered with feet that blistered really easily – the skin would tear and it was incredibly painful.

I was in my second year at University studying dance when the problems intensified. My feet would be bloody and my blisters would be infected. I sought a diagnosis and was referred to the specialist EB team at Solihull Hospital (a Centre of Excellence in EB supported by DEBRA). Thanks to the support I have received from the EB team, I’m no longer struggling on my own. I now know how to care for my feet and keep the blistering to a minimum, dramatically reducing the pain I’m in. ” Jess Skeith, DEBRA Member

• We delivered online sessions to provide access to specialist EB expertise from EB dietitians, podiatrists, physiotherapists and other healthcare professionals.

• We provided funding for specialist EB dietitians at Guys & St Thomas’ Hospital and Birmingham Children’s Hospital one day per week to provide nutritional advice to promote vital health and wellbeing, wound healing and boost immunity.

Our ambition

We will establish DEBRA as the ‘go to training hub’, developing and promoting courses, conferences, and professional networks internationally. An EB podiatry network and accredited course will be established. We will work with external organisations to include EB training at podiatry colleges and as part of dermatology courses. We will provide study grants to more professionals across the UK and support the running of multidisciplinary workshops focused on EB.

How we will achieve it

• Continue funding up to 25% of specialist EB nurses and funding additional grants to develop expertise within the teams as well as small project funding to enhance services.

• Continue to lead the development of accredited specialist EB podiatry training and make specialist information and support accessible to podiatrists across the UK enabling people with EB to access expert care locally.

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H EA LT H C A R E
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Helen’s story

Helen Weaver, DEBRA EB projects lead, working with healthcare and community support teams for over nine years

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S U PP O RT

Lifelong EB support

Empowering and advocating for the whole EB community

The EB community is at the heart of everything we do. Their lived experiences and views drive our commitment to connect patients, families and carers with the specialist services and support they need to improve quality of life and help us shape our services.

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5,000 people with EB in the UK

3,000+ DEBRA members

7 Community Support Team Managers

supporting living with EB virtually and in their homes and advocating on their behalf

5 Membership staff

support the wide membership group, connecting and engaging the EB community

470 EB members & families benefiting from respite in our 5 holiday homes

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SU P P O RT
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Kanon’s story

“

DEBRA means a lot to us, they have helped us in so many ways.

Any time I have a problem our Community Support Manager provides expert advice, emotional support and useful practical, and financial information we wouldn’t otherwise have access to. She has helped us apply for Disability Living Allowance and Universal Credit and took the time to explain how the process works.

We have taken respite in the DEBRA holiday homes, which has meant we have been able to take Kanon away, something that we wouldn’t have been able to afford on our own. On bad days, walking short distances can be impossible for Kanon and cause severe damage to his skin. DEBRA has helped me fund driving lessons so I can now drive Kanon to school and hospital appointments, making daily life more manageable. We want Kanon to lead a happy and most normal life as he can. DEBRA’s support makes this possible. ” Shalini Thachil, Kanon’s mother

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S U PP O RT

SU P P O RT

Katie’s story

“ My son Jamie was born with no skin on his feet, knees and hands and even where there was intact skin, it blistered. It was so hard to bond – I didn’t hold my baby for the first six months.

He is the first person in my family to have EB so it came as an enormous shock. Jamie has a full skin check every day, which involves me lancing all blisters that have occurred overnight. I dress all the wounds and put protective bandages on before dressing him as well as giving him pain killers. The daily routine is quite structured to ensure he feels safe and secure at all times. He has his large dose of morphine before the evening meal so he’s ready for his bath and can cope with more dressing changes. The most difficult thing about EB is seeing your child in pain, knowing that the care you are giving is causing so much distress.

The support I have received from DEBRA has been outstanding and makes a real difference. DEBRA has provided me with a changing table where I keep all the dressings and has signposted me to disability living allowance to help soften the blow of not being able to return to work as I am now a full time carer. The information booklets and website are a good reference to anyone wanting to know more. Meeting others with EB through DEBRA has made my outlook on the future less daunting. Seeing children with EB playing happily and managing daily activities gave me positivity and hope. The DEBRA days give me a boost of mental energy I so often need.

I feel extremely proud and in awe of Jamie, his happiness and joy keeps me motivated to stay strong. I am keeping positive that Jamie will improve with age and become less fragile so his ” pain levels will reduce. Katie White, mother of Jamie White

What we did in 2021

Our Community Support and Membership teams worked hard to ensure that all people living with EB and their families who needed our support were able to access us virtually or in person.

• We postponed our Members’ Weekend and in-person events due to the difficulties created by the pandemic, however we developed our range of virtual groups and online sessions for members, with drop-in groups for parents and teenagers to build social networks. We ensured access to EB expertise with online sessions from specialist EB dietitians, podiatrists, physiotherapists and other healthcare professionals.

4,300 calls, contacts, visits and a wide range of actions to support people with EB.

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S U PP O RT

Our ambition

We will empower the EB community, ensuring they have a voice and enabling greater choice and independence. We will connect, engage, and grow our membership through communication, understanding their needs, providing support, care, information and advocacy.

How we will achieve it

DEBRA support

“ When I was sixteen, I started developing severe blistering in my throat. Swallowing food can feel like eating razor blades.

DEBRA UK has been my rock. Not only do they help fund EB nurses who make my condition manageable, they have made me realise I can meet and share experiences with other people living with EB. The EB Community is a family. DEBRA UK is like the glue that keeps us together. ”

DEBRA member

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SU P P O RT
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Sabrina’s story

We helped siblings access emotional support, enabled families to use the DEBRA holiday homes and enhanced the support we offer by undertaking specialist training in listening and counselling skills. We are here to support everyone affected by EB. ”

Sabrina Khan, Community Support Manager

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C OL L AB O R AT IO N

A global and collaborative approach Working together for improved outcomes

We are living in an era of enormous scientific and medical innovation. The tremendous effort of researchers looking into treatments, vaccines and cures for COVID-19, has demonstrated that a global and collaborative approach can lead to outstanding results.

This approach is also the most effective for EB research and healthcare. It is a time of real opportunity, driving a programme of world-class, innovative and collaborative partnerships and healthcare that will bring hope and improved outcomes for everyone living with EB. Together we can achieve this ambitious and essential journey to change lives and end suffering.

443 members of the Clinical Practice Guidelines Network

40+ years working collaboratively in EB research, healthcare and support

134 research projects across 12 countries and 52 world-class research institutions funded by DEBRA UK

50 DEBRA international groups working collaboratively for EB

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C O L L A B O R AT I O N
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What we achieved in 2021

There are an estimated 5,000 people with EB in the UK and 500,000 worldwide.

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C O L L A B O R AT I O N

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C OL L AB O R AT IO N
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Enhancing global EB care and best practice

We are a founding member and contribute funding and support for DEBRA International, our umbrella organisation with nearly 50 groups worldwide, all working towards improving the lives of those living with EB in their respective countries.

41% of Clinical Practice Guidelines (CPGs) funded by DEBRA UK in the past 5 years, with £253,952 funding for 9 CPGs.

DEBRA International develops the Clinical Practice Guidelines which, with the help of over 300 clinical and patient volunteers, provide vital, internationally consistent practice information to guide health and social care professionals with patient versions and infographics in a format suitable for a lay audience. DEBRA International also manages EB Without Borders (EBWB) group, a collaborative effort to assist EB patients around the world, particularly in locations without a national DEBRA organisation and little to no clinical knowledge of EB.

Looking ahead

We will continue to work with world-class scientists and clinicians and with national and international partners from academia, biotechnology and pharmaceutical industries and organisations with a shared interest in EB or other skin conditions.

We will also work closely with DEBRA International and DEBRA groups across the world to develop Clinical Practice Guidelines and share knowledge and best practice internationally as well as working with DEBRA International to manage the Research Involvement Network informing members of developments in EB research and promoting its importance and opportunities for patient involvement.

Our ambition

Central to our ambitious strategic plans is the awareness that a global and collaborative approach is needed if we are to increase the pace and breadth of our work and achieve life-changing improvements to clinical care, treatments and, ultimately, a cure for EB.

Tackling the big questions in EB research can only be done through a multidisciplinary collaborative approach. We will continue to work with existing and new partners in all sectors: from universities and NHS to governmental, industry and other charities. ” Tony Byrne, CEO DEBRA UK

“

I think of the thriving community that I consider myself very lucky to be part of, the cutting edge research we’re undertaking in Birmingham, but also around the world. It truly is a global and collaborative effort to try to improve the quality of life of every individual affected by EB.[”]

“

Dr Ajoy Bardhan, University of Birmingham

How we will achieve it

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V OI C E S

VO I C ES

EB voices Raising awareness, engaging communities

As a rare disease, awareness of EB is relatively low. We want to achieve greater awareness of EB within the healthcare and research communities and the wider public to ensure there is understanding for those living with the condition, more widespread EB expertise and support for our income generation through fundraising and our retail stores to enable us to fund essential research and care.

We want to give everyone living with and working with EB a voice. We want to fight EB together.

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32% of people now aware of EB

What we achieved in 2021

Due to the continued effects of the pandemic and furloughed staff in the first quarter, we paused some of the projects in our digital transformation roadmap while continuing to support income generation and connecting and engaging our communities with frequent communication.

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V OI C E S

VO I C ES

Our ambition

Raising awareness of EB is vital. As a rare disease, public awareness of EB is low, however we are working hard to change this.

It’s time to transform our brand and empower and engage our communities, so that everyone living with and connected with EB sees us the key source of expertise, support and information on EB and the public recognise and support our cause, engaging with our work and seeking our retail stores as a sustainable destination of choice.

A YouGov poll undertaken in March 2022 revealed that 32% of adults surveyed had heard of EB – an increase of 19% since our last poll.[1]

How we will achieve it

To deliver the charity’s strategic plan, we will focus on three key areas – raising awareness, being the source of reliable, expert information and engaging our communities.

1 All figures, unless otherwise stated, are from YouGov Plc. Total sample size was 2077 adults. Fieldwork was undertaken between 23–24 March 2022. The survey was carried out online. The figures have been weighted and are representative of all GB adults (aged 18+).

Hiba’s story

This condition is really hard because it’s very painful when my clothes stick, when I change my dressings or when I take a bath. I cry a lot.

My fingers closed and I had an operation on my hands. Four months later they were closed again. I went to school and it was hard to write. Even my feet were swollen. I had an operation on my throat because I couldn’t swallow food or water. It was very helpful but it started closing again. I have a gastronomy button now. No one can feel how I feel. The doctors are trying to make things better but EB is really hard for everyone.

When I grow up I want to be a scientist to make new medicines for children that have illnesses like mine. Hopefully I will cure EB. I know it’s not impossible. Everything is possible. ”

Hiba el Mansouri Sghiar

DEBRA’s Community Support Team are working with Hiba and her family and have enabled them to move into adapted accommodation and access essential equipment and support. Hiba is keen to be an EB ambassador, sharing her story to increase awareness of EB.

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F UN D R AIS I N G

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F U N D R A I SI N G
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How we raise our funds Building relationships, creating opportunities

Like many charities, our fundraising has been severely challenged. Having to cancel or postpone our usual programme of events was essential to protect the wellbeing of our staff, volunteers, customers and community.

However, we were innovative in our approach and proactive in building relationships with current and new donors and this, and the response that we had from our supporters, enabled us to get our income back on track.

What we did in 2021

We want to take this opportunity to say a huge thank you to our community support team, healthcare professionals, researchers, trustees, staff and volunteers, customers, trusts, companies and donors for the continued, committed support you have given to our charity and to the EB community. We couldn’t have survived the past two years without you. Together we have made a difference and will continue to #FightEB until we have achieved our vision of a world where no one suffers with EB.

Despite the difficulties of a year where staff were furloughed and events were limited or postponed, we ended the year in a good position with successful events, a number of well-supported appeals and commitment from new major donors including £460,000 towards our first drug repurposing research project.

£2.2m[raised by our incredible supporters this year.]

Nurses from Great Ormond Street took part in our 100km Challenge. They make a life-changing difference to children with EB, providing much needed specialist care and support.

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“

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F UN D R AIS I N G

Our ambition

How we will achieve it

We have set ourselves an ambitious and challenging target. Our aim is to grow our core net fundraising income from £1.1m in 2021 to £1.6m in 2022 and £1.75m in 2023, an increase of 59%.

Recognising the short and long term impact of COVID-19, we will focus our opportunities for recovery on the development of long term relationships and our major donor, trusts and corporate donations. At the heart of everything we do will be the relationship with our EB Community and our determination to fund specialist healthcare and research that will be life-changing for people with EB.

Great Chefs Dinner raises £130k

This year’s event brings the total raised for DEBRA in the six years Michel Roux Jr has hosted this event, our Great Chefs Dinners, to more than £380,000. We are so grateful to Michel, all the team of incredible chefs and staff at Roux at The Landau, and The Langham who made it all possible.

• Communication: creating compelling cases for support and messaging based on supporter journeys that will build emotional engagement with potential and existing supporters. This will be supported by the data insights provided by our new CRM database.

We are delighted to confirm that, through the generosity and support of major philanthropist, Lenore England, we have secured funding of £460,000 towards our first drug repurposing research project.

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Drug repurposing

Drug repurposing has been thrown into the spotlight during the fight against COVID-19 as drugs developed for other conditions have proved highly effective in the treatment of COVID patients.

Drug repurposing is an exciting opportunity for EB and is essential for rare diseases where high costs can make traditional drug discovery unviable.

In 2022, we will be launching a major appeal – the more drugs we can repurpose the greater our chances of making successful, life-changing treatments available.

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Thank you

We have been fortunate to be able to count on the continued backing of a number of very generous supporters. To everyone who donated to our cause and to the thousands of people who ran, cycled, took up our 100k challenge, volunteered or supported our appeals. To companies and trustees, the many ambassadors who speak about EB and DEBRA at events and to everyone who shares our story on social media – we would like to say a heartfelt thank you.

We are also extremely grateful to our Patron, HRH The Countess of Wessex, for her continued support throughout 2021 and to our President, Simon Weston CBE and Vice Presidents Frank Warren and Graeme Souness.

Our Patron, President, Vice-Presidents

The Peter Harrison Foundation

HRH The Countess of Wessex Simon Weston CBE Graeme Souness Frank Warren

The DM Charitable Trust

The Fowler Smith and Jones Trust The Joseph Strong Frazer Trust The Sir Iain Stewart Foundation

The Co-op Foundation The Leach Fourteenth Trust

Trusts and foundations

The Band Trust The Souter Charitable Trust The VTCT Foundation Bill Brown's Charitable Settlement of 1989 The Dorus Trust The Kola'a Trust The Forest Hill Charitable Trust The Murphy-Neuman Charity The Dyer's Company The Edith Murphy Foundation The John Coates Charitable Trust The Northwood Charitable Trust The Grace Trust The Hadrian Trust The Catherine Cookson Charitable Trust

The Strangward Trust

The GM Morrison Charitable Trust The Lillie Johnson Charitable Trust The David Laing Foundation The Edward Cadbury Trust

The Gilbert and Eileen Edgar Foundation The Calleva Foundation The Raven Charitable Trust The Shanly Foundation The Tory Family Foundation The Ammco Trust The Louis Bayliss Charitable Trust The Benham Charitable Settlement The John Cowan Foundation

The William Brake Foundation

The Basil Samuel Charitable Trust The Childwick Trust

The Verdon-Smith Charitable Trust

The Louis Nicholas Residuary Charitable Trust The Riply Trust

The Michael and Anna Wix Charitable Trust The Alice Ellen Cooper Dean Foundation The Bruce Wake Charity The February Foundation The Hugh Fraser Foundation The QBE Foundation

The Riada Trust

The 29th May Charitable Trust

Marconi Chelmsford Employees Charitable Trust Fund

The Wixamtree Trust

The Mabs Mardulyn Charitable Foundation Awards for All

The George Stewart Charitable Trust

The Jack Lane Charitable Trust

The Sylvia and Colin Sheppard Charitable Trust

The PF Charitable Trust

The Parry Family Foundation

The Maud Elkington Charitable Trust The W.E.D Charitable Trust The George A Moore Foundation The Hudson Charitable Trust Baron Davenports Charity The Hospital Saturday Fund

The Brother's Trust

The Ardwick Trust The Misses Barrie Charitable Trust The Eveson Charitable Trust The James Wise Charitable Trust The Charles S French Charitable Trust The Charity Service Fund The National Lottery Community Fund The Enid Linder Foundation The Klahr Charitable Trust The Manson Family Charitable Trust The Whittington Charitable Trust The Barbara and Stanley Fink Foundation The Simon Gibson Charitable Trust

Trusts and grants

In 2021 we were delighted that Lenore England Family Foundation and Philanthropy made a commitment to funding up to £2 million for DEBRA research.

This significant and extremely generous gift represents the biggest single gift we have received and will provide a secure foundation for developing the ambitious programme of world-class, collaborative research we are planning.

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R E TAI L

R ETA I L

Our stores At the heart of our communities

The support from our customers and the hard work and dedication of our retail staff and volunteers throughout the challenges of the past two years has been vital, keeping our stores at the heart of their communities, helping to build awareness of EB, raising the profile of DEBRA and generating vital income to fund our research, support and healthcare.

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What we achieved in 2021

Like many charities, we have been recovering from the impact of the pandemic with our stores closed during successive lockdowns in 2020 and early 2021. However the increase in our online sales, the growing trend towards recycling and the loyalty and support of our customers when we reopened in April with donations and sales enabled us to achieve a healthy growth overall.

290 dedicated staff in our stores

838 volunteers giving 335,000 hours of donated time

£8.7 million raised by retail

30% increase in online sales

Over 1.2 million kilos of items recycled

DEBRA is the 7th largest charity retailer in the UK

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R E TAI L

Looking ahead

The pandemic has accelerated shifts in consumer behaviour, with the most significant changes taking place in online spending, a greater focus on the community, and a deeper awareness of brand ethics and how our choices impact the environment.

Our stores will play a vital role in their communities, raising awareness of EB and delivering increased income from our online and instore sales to fund life-changing treatments and improved outcomes for everyone living with EB.

Our ambition

We plan to grow our net retail income by 83% over 3 years – from £1.3m in 2021 to £2.1m in 2022 and £2.4m in 2023. This is an ambitious target.

To achieve it, we will need to be the destination of choice online and on the high street, making our retail outlets attractive, pleasant places to work, shop, and volunteer. We will increase our sales and the number and format of our stores, refurbishing them to create higher quality, attractive retail environments. We will also improve our e-commerce and online sales that is more competitive, so that we can reach a wider audience with a relevant sales offering and promote our cause.

Our people are the key to our success. A motivated, knowledgeable and engaged team of staff and volunteers is our most essential asset. They will always be at the heart of what we do. We will work hard to create a stable and well-trained workforce, increasing overall volunteer numbers and ensuring excellent and consistent Health & Safety management and compliance.

Our aim is to reach a wider audience, command higher prices, promote our cause and ensure we have a more resilient approach in the event of any future unforeseen events such as further lockdowns.

£8.7m raised through DEBRA Retail to fund our life-changing healthcare, research and support for the EB community.

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David’s story

I joined DEBRA as a volunteer when I was 16. There’s a great collaborative atmosphere at DEBRA – I’ve never worked with a friendlier group of people and we really are invested in the charity and what it stands for.

“

I’m always thrilled when we get another interesting bit of tech in a donation for me to work out, and sometimes fix. The environment is so supportive and engaging. Once I started volunteering, I realised I never wanted to stop helping out!

Volunteering at DEBRA opened so much for me. I really feel I’m making a difference here and it’s a great way for a young person to develop their skills. I haven’t regretted a minute of my time at DEBRA and I encourage anyone to get stuck in and do some work for a good cause!

My first job in retail was won thanks to the experience I got whilst volunteering at the store each week. It taught me so many great lessons that really helped me when I got into paid work.

”

I’ve really enjoyed doing work I believe in, from working the till to sorting donations. Because of my background in technology I’ve ended up becoming a sort of tech expert for the store –

David Driver-Gomm, DEBRA Volunteer

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Thank you to our amazing volunteers

We are one team. Our volunteers play a crucial role in our retail stores as well as supporting our fundraising and working with teams across the charity. Our volunteers report that it is an opportunity to socialise, learn new skills, and gain valuable work experience to move into paid employment. They are an essential part of the DEBRA team. We are so grateful for their commitment and skills – we couldn’t achieve our mission without them.

How we will achieve it

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Simon’s story

Babies born with EB can spend the rest of their life in pain, taking pain killers or medications to cure the itch, undergoing dressings that are painful and take hours.

We are trying to help people have improved quality of life. We have to find a cure. Until then we have a real crusade because these incredible people, and these families, don’t deserve what they are going through. We need to fund the EB research and healthcare that will bring lifechanging improvements to quality of life today and a cure tomorrow.” Simon Weston, President of DEBRA

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PE OP LE

Our people

Our people are at the heart of everything we do. Whether developing our vital research and healthcare programmes, supporting families with EB, managing or volunteering in our charity shops, working to raise essential funds, promoting and communicating the work we do, processing income, providing learning and development or supporting our cause as a Patron, President or Vice President, every person in our charity provides a highly valued contribution to the service that we provide to EB and our community.

We want to say thank you to...

In 2021...

95% of staff furloughed

360 employees

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P EO P L E
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335,000 hours volunteered in our stores

840 volunteers

7,000+ hours of training for staff

13 trustees

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Our commitment to Equality Diversity and Inclusion

“

My personal connection to DEBRA and EB is that I am a mum to a daughter with EBS. She is the first in our family to have EB. Now I am involved through the Board of Trustees in order to be front and centre in what is happening with EB.

We started thinking about our Equality Diversity and Inclusion strategy in 2020, to examine ourselves and to ask are we being inclusive enough and ask what more can we do.

We are looking at how we can be more inclusive throughout our charity – board level, staff and volunteers and our members. We also want to improve our diversity through our recruitment and engage better. We know that if you bring your best self to work that we will get the best from you and you will get the best from your working environment so we want to empower all our employees to feel that DEBRA values them for everything they are. It is a journey – it can’t be achieved overnight but we are striving to be the best we possibly can be. ”

Carly Fields, Co-Vice Chair of Trustees and Chair Research Care & Research Committee

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PE OP LE

P EO P L E

What we did in 2021

“ I consider it a privilege to work for DEBRA. Each day I get to know amazing families who overcome huge challenges. The support we are able to offer makes it a fantastically rewarding role to be in.[”]

Amelia, Community Support Manager

“ Having worked remotely for over a year now it has been tough to carry out so much work over the telephone. So when I receive a photo of one of the members it can really brighten up my day. ”

DEBRA employee

“

It is probably one of the most enjoyable and rewarding jobs anyone can do. ” DEBRA employee

• We continued to provide learning and development opportunities, ran Safeguarding September and a virtual conference for staff and volunteers.

• As a result of the employee feedback in 2020 and our ambition to be an “Employer of Choice” in the charity sector, we reviewed and updated our company values, created a new Equality, Diversity & Inclusion framework, and initiated a review of our benefits and recognition structure.

www.debra.org.uk/gender-pay-gap for more details.

Our values

During the year, employees and volunteers participated in a series of values workshops to provide a set of common beliefs, behaviours and understanding to support and enable us to work collectively to achieve our mission. We will build these values into everything that we do – how we interact with each other, training, recruitment, reward and recognition and wellbeing.

Making a difference

We make a positive contribution to the lives of the EB community, our colleagues, and the community we live in through the individual work and activities undertaken by each employee and volunteer.

Inclusive

We value diversity and proactively seek to support, engage and nurture every individual within the DEBRA community.

Respectful

We treat our members, colleagues, volunteers and customers, with respect. We value the views and diversity of others and intervene when those around us do not uphold the high standards we expect.

Passionate

We go the extra mile to achieve individual and collective goals. We do our best every day, so that we can move forward in our quest to improve the quality of life of our members and find a cure for EB.

Caring

We prioritise the needs of others, looking to brighten the day of those around us. Doing a great job really matters whether we are supporting members, serving customers, fundraising or raising awareness of EB. We care for one another.

Committed

We look for solutions, working together to create positive change. We deliver on our promises through hard work, collaboration, and determination.

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PE OP LE

P EO P L E

I had been out of work as I was a stay-at-home mum to my son and also I looked after my mother.

I wanted to start work and applied for many many jobs, but with a gap in my employment history no one would hire me.

Since starting volunteering I have learnt the confidence and skills to sort stock, till training and health and safety. I have made new friends and been a part of the community. I love my job and the fact that I am helping raise awareness and money for EB. ”

DEBRA volunteer

Our ambition

Our ambition is to lead the fight against EB and be exemplary in all the activities involved in this fight. To achieve this the key to our success is our people. We will prioritise learning and development for our staff, volunteers and others supporting people living with EB, to ensure that they are knowledgeable about EB and up to date in all areas of health and social care. Our aim over the next two years is to focus on becoming a ‘Great Place to Work’. We will support, train and reward our staff for the role they play in delivering our mission ensuring that employees and volunteers have the tools and resources they need to do their job to the best of their ability.

Our People agenda will focus on three priority areas:

How we will achieve it

A great place to work

Our aim is to create a culture where our whole community can thrive, are valued, where equality and diversity are embedded in our values and actions and where everyone has the opportunity to develop, to enjoy their work and to make a difference.

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Safeguarding

Safeguarding continues to be a priority in DEBRA, in the past 12 months our focus has been on raising awareness of safeguarding amongst our employees and volunteers.

In addition to a mandatory online training module, we ran Safeguarding September where throughout the month a range of materials were shared including educational videos, case studies, articles, and stories. We also hosted live sessions examining the difference between welfare cases and safeguarding, providing clear

guidance on how best to report any concerns that employees or volunteers may have.

For our volunteers a new Safeguarding Booklet was rolled out giving an overview of what safeguarding is along with helpful guidance of what to do if they are concerned for their own or anybody else’s wellbeing.

Our Safeguarding Committee agreed that an internal audit of our Safeguarding policy and process should be undertaken to highlight any gaps and support our journey to best practice in this area.

Charity overview, objectives & public benefit

Equality, diversity and inclusion

Under the guidance of the Equality, Diversity and Inclusion (EDI) committee there has been significant progress with our EDI agenda in 2021.

An EDI policy and commitments has been created that not only aligns with UK anti discrimination law but also outlines the pro-active steps that DEBRA will take to create a diverse and inclusive community for our members, staff and volunteers. The EDI committee and Senior Management team participated in a one-day EDI training session with all employees being asked to complete an online training module. With a view to ensure participation from all areas of DEBRA an EDI working group has been formed. Their role is to act as champions within their directorate, as well as support the creation and roll out of new EDI initiatives and processes.

With the introduction of new digital databases, we will have visibility of the demographic of our members, staff and volunteers thereby allowing us to tailor our services and policies to meet their needs.

Although we still have a long way to go, we are proud of the steps we have made on the journey so far.

Equal Opportunities Policy Statement

We are an equal opportunities employer organisation. We are committed to ensuring that there will be no discrimination on grounds of race (including colour, nationality, ethnic or national origins), sex or marital status, gender reassignment, sexual orientation, religion or belief, disability, age, or pregnancy/maternity, which is not permitted by law; or on any other grounds, except where this is necessary to ensure that a job is done effectively and safely. This principle will apply to access of services by people whose lives are affected by EB, and to the recruitment, training and promotion of staff, and all other benefits, terms and conditions of employment. All employees and volunteers acting on behalf of DEBRA have a responsibility to apply this principle in practice.

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Financial review

The COVID-19 pandemic continued throughout 2021, which began with another lockdown. Shops were closed from January until mid-April. Despite the large drop in income, with good financial planning, we were able to continue serving the EB community. We spent £1.9m on charitable activities in 2021, compared with £2.8m in 2020. Whilst new research commitments were limited, spend on healthcare, community support and respite exceeded £1m, compared to £1.2m in 2020.

The surplus for the year was £0.8m, compared to a deficit of £2.4m in 2020. DEBRA’s reserves built up in prior years have allowed operations to continue and are now being replenished as normal trading resumes.

Charitable spend

Charitable spend was £1.89m in 2021 compared to £2.85m in 2020. The key contribution to this fall was a reduction in research expenditure of £0.70m with £0.48m spent in 2021 compared to £1.18m in 2020. £0.69m (2020: £0.89m) was spent on Community Support initiatives, £0.25m (2020: £0.35m) on Healthcare services and £0.37m (2019: £0.48m) on Public Education.

The eight months shops were open for trading resulted in net income from the retail operation, including government grants of £1.7m, compared with a deficit of £0.7m in 2020.

Net assets increased to £3.80m from £2.98m. There was £3.5m in the general fund, £0.55m in designated funds and a £0.25m deficit in restricted funds.

Many of our fundraising activities were severely curtailed during the first half of the year. However some major events were pushed back to the autumn and generated positive results. Overall net fundraising income was £0.96m in 2021, compared with £1.05m 2020.

Chart 1: Charitable Expenditure 2021

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20%
Public
education
26%
Community
41%
support
Healthcare
13%
Research
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Summary

Net retail income achieved through the shops (including Retail Gift Aid, commission and donations received in the shops, but excluding government support) increased by 21% to £8.7m from £7.2m. Although shops numbers reduced by six and were closed for the first four months of 2021 they were less impacted by government action than in 2020.

Table 3 summarises the highlights of our financial performance over the last five years. Gross income was £13.3m in 2021, an increase of £1.9m (16%) from 2020.

Non-trading gross income (not including government retail support) was £2.29m, a slight decrease from £2.33m in 2020. This includes income from donations, corporate support, trusts and community events.

The pandemic has had a devastating impact on our finances but, due to sound financial management in previous years, the strong reserves base was accessed to maintain close to normal levels of charitable activities.

Table 3: Financial KPI summary

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2021 2020 2019 2018 2017
Gross income 13,317k 11,413k 16,798k 16,138k 16,182k
Non-trading income including all
4,663k 4,387k 3,475k 2,979k 3,468k
government support
Net trading income (1,299k) (3,201k) 1,198k 1,193k 616k
Net retail income including government
pandemic support, retail gift aid, 1,689k (673k) 2,123k 2,138k 1,652k
commission and donations in shops
Non-trading fundraising costs 662k 708k 768k 727k 1,083k
Charitable expenditure 1,885k 2,848k 3,110k 2,966k 3,299k
Retained surplus/(deficit) 817k (2,371k) 795k 479k (299k)
Retained surplus/(deficit) as a % of
6% (21%) 5% 3% (1.8%)
income
Net current assets 3.124k 2,684k 4,878k 4,394k 3,951k
Unrestricted reserves 4,050k 2,904k 5,138k 4,420k 3,997k
Grants payable within 1 year 2,237k 2,159k 2,201k 1,825k 1,156k
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The charity’s fixed assets comprise the premises and equipment required to operate trading activities; premises, furniture and equipment required to operate the charity’s offices; and five holiday homes held for the

use of those affected by EB. The rest of the charity’s assets are held to promote the purposes of the charity through its support services and research programmes.

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Reserves policy

DEBRA holds reserves to ensure the charity is able to continue supporting its beneficiaries and as a buffer for short term cash flow needs.

The trustees’ reserves policy in 2021 was to maintain minimum cash-backed free reserves at £1,800k, plus a £250k balance in the designated fund for nursing continuity, to which the charity adhered. We have a high proportion of retail income, which usually provides a stable and reliable income stream. However, this incurs a high cost base, and the minimum reserves figure would cover one month’s costs (excluding rent) plus six months’ rent.

The trustees conducted a thorough review of the reserves policy at the end of 2021, reviewing performance criteria in the light of the pandemic and the deficit in 2020. The trustees’ aim is to grow cash-backed free reserves over the next five years to £3.3m, in line with planned growth in retail and fundraising operations.

Total reserves at the end of 2021 were £3.80m, including a deficit balance of £0.25m in restricted funds. Cash-backed free reserves before designations were £3.28m, of which £0.55m was designated for specific purposes, bringing the total cash-backed free reserves after designations to £2.73m. Cash-backed free reserves are calculated by subtracting fixed assets from unrestricted reserves and adding back 50% of unrestricted freehold and long leasehold property. This is the value that could be readily mortgaged, thus representing reserves that can be accessed relatively quickly.

Restricted funds

Restricted funds comprised £98k funds for community support and healthcare activities, and a deficit balance of £350k in respect of Medical Research Council (MRC) funding. An agreement was signed with the MRC who agreed to provide funding for specific research projects already in progress. The funds were received in 2022. The related costs were recognised in the income statement and charged to the general fund on grant award in accordance with DEBRA accounting policies. Therefore, a transfer from restricted funds to general funds is required in 2021 representing spend already incurred.

NHS Digital fund

A total of £200k has been made available in the designated fund for NHS Digital. This balance is sufficient to fund the data project for the fully two-year lifecycle.

Nursing continuity fund

The amount of £250k was made available in the designated fund for nursing continuity. The purpose of this fund is to cover the cost of the continued nursing service to the EB community for six months in the event of the NHS withdrawing current levels of support. It is expected this fund will be spent in the next five to ten years.

General fund

There was £3.50m in the general fund, of which £1.01m can only be realised by disposing of tangible fixed assets. The trustees are satisfied that there are sufficient cash balances to meet legal commitments as they fall due.

Investment policy

Trustees are authorised under the Articles of Association to invest any monies not immediately required for its objects in or upon such investments, securities or properties as may be thought fit.

We aim to apply our income in support of our charitable objectives, and further investment is considered as an interim measure in respect of as yet uncommitted cash surpluses. All investment activities involve risk and reward, and the policy is to achieve a satisfactory return whilst minimising risk.

Prior to the pandemic, the charity took the view that this was best achieved by investing funds not immediately needed in short-term money market deposits through Lloyds Bank Corporate Markets. The investments have been transferred to cash at the current time during this period of uncertainty.

Expenses policy

We have expenses policies for both staff and trustees and a PAYE dispensation in place. Expenses that have necessarily been incurred by staff and trustees in performance of their duties are recoverable from DEBRA. Expenses will only be reimbursed if they meet the following criteria:

Funds

The majority of our funds are unrestricted in application and are held in a general and two designated funds. Where funds are received that are restricted in their application to specific purposes or activities, these are held in a restricted fund. Details of restricted funds and designated funds are set out in Note 17 of the Financial Statements.

Asset cover for funds

Note 18 sets out an analysis of the assets attributable to the various funds. These assets are sufficient to meet the charity’s obligations on a fund-by-fund basis.

Related parties

DEBRA has a 100% beneficial interest in DEBRA Trading Ltd, whose principal activities in 2021 were a house clearance service and sales of new goods in our charity shops. Other activities include miscellaneous nonprimary purpose trading undertaken by the charity. For information, the company’s results are shown separately in Note 22 of the Financial Statements.

Internal audit

The trustees appointed RSM as internal auditors during the year. Audits of Risk Management and Health & Safety were carried out and resulting action plans are being implemented by management. Audits of Internal Financial Controls, Cyber Security, Payroll and Fundraising are planned for 2022.

Any expenses that do not meet the criteria above are regarded as a benefit by HMRC and as a matter of policy we do not reimburse such expenses.

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Principal risks and uncertainties

The trustees have established a register for all identified major strategic, business and operational risks identified by them to which the charity is exposed and confirm that these have been reviewed regularly during the year by the Finance, Risk and Audit Committee (as well as annually by the Board of Trustees) and that systems and procedures have been established to manage these risks. The initial responsibility for managing risk lies with the executive, prior to review by the trustees.

A summary extract of the higher risks from our risk register is listed in Table 4 below, including the countermeasures (actions in place to reduce likelihood of the risk) and assurances (how the effectiveness of the countermeasures is determined). DEBRA as an organisation is very proactive in its management of risk, instilling a culture of recognition, ownership and tolerance level for each risk identified.

See Table 4: DEBRA’s top ten risks.

Table 4: Summary Extract from DEBRA’s Risk Register

----- Start of picture text -----
Risk Description Current actions
1 COVID-19 Infection rates or government • COVID-19 Risk Assessment
Pandemic action leads to shop closures
• Training for staff
understaffing and other
• Covid safe shop layout
business impacts leading to
loss of income and reduced • PPE and sanitiser supplied
ability to meet the needs of
• safe working systems
the EB community
• Health and Safety file set to all shops
2 Compliance Non-compliance with H&S • Professionally qualified H&S, HR, Finance
with or other law leads to: and compliance personnel
Health and
• Serious injury / loss of life • Use of 3rd party consultancy advice
Safety and
other laws • fines and legal action • Health & Safety policy and training /
against DEBRA and its IOSH training
Trustees / employees
• Health and Safety Audits
• Reputational damage
• Shops Risk Register
----- End of picture text -----

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Going concern statement

The trustees have reviewed the financial statements and forecast to the end of 2023, detailing the plans for financial recovery whilst maintaining a first-class service to the EB community. It is recognised that there are underlying uncertainties, however the trustees consider the charity can continue its businesscritical activities and remain a going concern. The retail estate re-opened during April 2021 providing a regular income stream of unrestricted funds, plus the suite of fundraising events started up again and there have been no further retail restrictions imposed by the Government since. The trustees consider it is appropriate to prepare the 2021 accounts on a going concern basis on the basis that:

Structure, governance & management

The Board has a collective responsibility for everything we do and is responsible for:

DEBRA is a company limited by guarantee registered with the Charity Commission in England and Wales (1084958). This means our trustees are also company directors, so subject to company law as well as charity law. We are also registered with the Office of the Scottish Regulator in Scotland.

Board of Trustees

Our Board of trustees is made up from a majority of those who have a direct experience of EB, who either have EB themselves or have a close family member with EB, and those who have skills and experience that will add value to the governance and leadership of DEBRA. Of the 15 trustees, up to eight are elected by the membership and up to seven appointed by the Board. This ensures a good mix of skills, talents and experience to serve the DEBRA community.

An Annual General Meeting was held via Zoom in May 2021. Three appointed trustees Graham Marsden, Tim Powell and Jo Merchant reached the end of a three-year term. After serving three x three-year terms, Graham retired as required by DEBRA’s articles and Tim stepped down after two terms. Both were

thanked for their dedication over the years, particularly over the past 12 months.

As recommended by the Nominations & Governance Committee the Board of Trustees re¬appointed Jo Merchant for a third threeyear term. The Board also appointed Simone Bunting (who had previously served as a trustee, but had taken a year’s break as required by DEBRA’s articles) for a first term of three years. Simon Talbot was also elected by the members.

New trustees receive a Trustee Handbook and other relevant publications, individual inductions from senior trustees as relevant and trustees attend external training courses appropriate to their role on the Board of Trustees. There are four board meetings per year, which the CEO attends and Senior Management Team members attend as required.

Trustee Board committees

Finance, Risk & Audit Committee – determines and advises the Board of Trustees on matters relating to finance, risk and audit as the Board of Trustees may remit to it, in particular the sound financial management of the charity, its resources and assets.

Care & Research Committee – determines

and advises the Board of Trustees on matters relating to strategy in research, healthcare, community support and policy as the Board of Trustees may remit to it.

Retail Committee – determines and advises the SMT and the Board of Trustees on matters relating to the shops. It utilises specific knowledge of its members to assist the CEO and Director of Retail to manage the shops, deliver operational performance against plan, comply with regulations and promote the cause of the charity.

Fundraising & Communications Committee

– oversees the fundraising activities of the SMT on matters relating to the growth of income generation and maximising opportunities within Marketing and PR. The Committee approves and recommends to the Board of Trustees the strategic direction of fundraising and the financial plan. It utilises specific knowledge of its members to challenge and support the Director of Fundraising and Director of Marketing and Communications to deliver against plans, comply with regulations and promote the cause of the charity.

Nominations & Governance Committee

– oversees the structure, composition and effectiveness of the charity’s Board of Trustees and its Committees, as well as the appointment process of trustees. The Committee monitors the governance procedures of the charity.

Steering Group – this committee was created in light of the pandemic and meets regularly on an ‘as needed’ basis.

See Table 5 below – Trustees’ membership and attendance.

The Trustees plan to undertake a full review of the existing committee structure during 2022.

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Board diversity

To ensure that we have a well-balanced board, those with experience of living or working with EB are the majority, together with those trustees who do not have EB experience but possess the relevant skills and knowledge. The Board members come from a variety of backgrounds, in order to bring different perspectives to discussions and enhance the Board’s decision-making process.

We follow the Equal Opportunities Policy in the selection of Board members, in the same way we do for staff recruitment. Membership of the Board is open to all members of DEBRA, irrespective of age, disability, gender, marital or civil partnership status, pregnancy and maternity, gender reassignment, race, religion and belief, sexual orientation, irrelevant offending background, responsibility for dependents, economic status or political values. Broader diversity of the Board continues to be reviewed as part of DEBRA’s Equality, Diversity & Inclusion project.

Charity governance code

The Board consistently reviews all aspects of DEBRA’s governance and ensures that our governance standards and practices fully embrace the principles of the Charity Commission ‘Charity Governance Code’. We are currently reviewing the updates to the code in December 2020, which strengthened the Principle of Equality of opportunity, Diversity and Inclusion (EDI) and updated the Integrity Principle.

Succession planning

We have built strength and depth in our Trustee Board, incorporating appropriate succession planning by appointing two Vice Chairs, each for periods of two years with an annual rotation of one of those. Prospective new trustees are often invited to join a committee for a minimum period of twelve months before becoming trustees.

Fundraising standards

Section 162a of the Charities Act 2011 requires charities to make a statement regarding fundraising activities. We do not undertake face-to-face fundraising from the general public. The legislation defines fundraising as ‘soliciting or otherwise procuring money or other property for charitable purposes’. Such amounts receivable is presented in the accounts as ‘voluntary income’ and include legacies and grants.

We make all efforts to train staff and ensure compliance with fundraising standards at all times. Specifically:

Activities in Scotland

We are active across several areas in Scotland. The primary charitable activities are seen in funding community support and research projects, notably at the Universities of Dundee and Edinburgh and the Cancer Research UK Beatson Institute, University of Glasgow. On the income generation side, there were two regional fundraising members of staff and 37 charity shops, both supported by an active volunteer network. The retail administration office for the entire charity is based in Blantyre.

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Table 5: Trustees’ membership and attendance records as at 31.12.2021.

----- Start of picture text -----
Board attendance Finance, Risk & Nominations Care & Research Retail Committee Fundraising &
Audit Committee & Governance Committee Communications
Committee Committee
Jim Irvine Chair 4 of 4 4 of 4 4 of 5
David Bendor-Samuel 3 of 4 5 of 5
Simone Bunting Elected May 2021 2 of 2 3 of 5 4 of 4
Rebecca Cresswell 1 of 4 4 of 4
Stood down
Simon Cuzner 2 of 2 3 of 3
16.07.2021
Carly Fields 4 of 4 3 of 3 4 of 4 2 of 2
Stood down
Andrew Grist 2 of 4
01.03.2022
Christo Kapourani 2 of 3 3 of 4
Stood down
Graham Marsden 2 of 2 3 of 3
27.05.2021
Joanne Merchant 4 of 4 4 of 4 4 of 4
Viv Mundy 2 of 4 3 of 5 3 of 4
Stood down
Timothy Powell 2 of 2 1 of 1
27.05.2021
Douglas Rouse 3 of 4 3 of 4
Mick Thomas 4 of 4 3 of 4
Simon Talbot 1 of 2 2 of 2
Co-opted
Josie Godfrey 1 of 1 0 of 1
06.08.2021
----- End of picture text -----

The committee chairs’ attendance is highlighted in bold.

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Auditor

28 days after these accounts are sent to the members, unless the members exercise their rights under the Companies Act 2006 to prevent their re-appointment.

Trustees have taken all reasonable steps to make themselves aware of any information needed by the company’s auditor for the purposes of their audit and to establish that the auditor is aware of that information. The trustees are not aware of any relevant audit information of which the auditor is unaware.

The Trustees’ Annual Report, incorporating the Strategic Report, is approved by the Board of Trustees and signed on behalf of the trustees:

We engaged Sayer Vincent LLP as auditor during 2020 and they have expressed their willingness to continue in office. Under the Companies Act 2006 section 487(2) they will be automatically re-appointed as auditor

Jim Irvine

Chair of Trustees

Trustees’ statement of responsibilities

The trustees (who are also directors of DEBRA for the purposes of company law) are responsible for preparing the Trustees’ Annual Report including the strategic report and the financial statements in accordance with applicable law and United Kingdom Accounting Standards (United Kingdom Generally Accepted Accounting Practice).

Company law requires the trustees to prepare financial statements for each financial year which give a true and fair view of the state of affairs of the charitable company and of the incoming resources and application of resources, including the income and expenditure, of the charitable company for that period. In preparing these financial statements, the trustees are required to:

• prepare the financial statements on the going concern basis unless it is inappropriate to presume that the charity will continue in operation.

The trustees are responsible for keeping adequate accounting records that disclose with reasonable accuracy at any time the financial position of the charitable company and enable them to ensure that the financial statements comply with the Companies Act 2006. They are also responsible for

safeguarding the assets of the charitable company and hence for taking reasonable steps for the prevention and detection of fraud and other irregularities.

In so far as the trustees are aware:

Auditor’s report

Independent auditor’s report to the members of DEBRA.

Opinion

We have audited the financial statements of DEBRA (the ‘charitable company’) for the year ended 31 December 2021 which comprise the Statement of Financial Activities, balance sheet, statement of cash flows and notes to the financial statements, including significant accounting policies. The financial reporting framework that has been applied in their preparation is applicable law and United Kingdom Accounting Standards, including FRS 102 The Financial Reporting Standard applicable in the UK and Republic of Ireland (United Kingdom Generally Accepted Accounting Practice).

In our opinion, the financial statements:

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Basis for 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 charitable company in accordance with the ethical requirements that are relevant to our audit of the financial statements in the UK, including the Financial Reporting Council’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 DEBRA’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 other information comprises the information included in the trustees’ annual report, including the strategic report, other than the financial statements and our auditor’s report thereon. The trustees are responsible for the other information contained within the annual report. 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. 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 course of the audit, or otherwise appears to be materially misstated. If we identify such material inconsistencies or apparent material misstatements, we are required to determine whether this gives rise to a material misstatement in the financial statements themselves. 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.

Opinions on other matters prescribed by the Companies Act 2006

In our opinion, based on the work undertaken in the course of the audit:

Matters on which we are required to report by exception

In the light of the knowledge and understanding of the charitable company and its environment obtained in the course of the audit, we have not identified material misstatements in the trustees’ annual report, including the strategic report.

We have nothing to report in respect of the following matters in relation to which the Companies Act 2006 and the Charities Accounts (Scotland) Regulations 2006 (as amended) require us to report to you if, in our opinion:

Responsibilities of trustees

As explained more fully in the statement of trustees’ responsibilities set out in the trustees’ annual report, the trustees (who are also the directors of the charitable

company for the purposes of company law) are responsible for the preparation of the financial statements and for being satisfied that they 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 charitable company’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 charitable company or to cease operations, or have no realistic alternative but to do so.

Auditor’s responsibilities for the audit of the financial statements

We have been appointed as auditor under section 44(1)(c) of the Charities and Trustee Investment (Scotland) Act 2005 and under the Companies Act 2006 and report in accordance with regulations made under those Acts.

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 are set out below.

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Capability of the audit in detecting irregularities

In identifying and assessing risks of material misstatement in respect of irregularities, including fraud and non-compliance with laws and regulations, our procedures included the following:

We enquired of management and Finance, Audit and Risk committee, which included obtaining and reviewing supporting documentation, concerning the charity’s policies and procedures relating to:

We inspected the minutes of meetings of those charged with governance.

We obtained an understanding of the legal and regulatory framework that the charity operates in, focusing on those laws and regulations that had a material effect on the financial statements or that had a fundamental effect on the operations of the charity from our professional and sector experience.

We communicated applicable laws and regulations throughout the Audit Team and remained alert to any indications of noncompliance throughout the audit.

We reviewed the financial statement disclosures and tested these to supporting documentation to assess compliance with applicable laws and regulations.

We performed analytical procedures to identify any unusual or unexpected relationships that may indicate risks of material misstatement due to fraud.

In addressing the risk of fraud through management override of controls, we tested the appropriateness of journal entries and other adjustments, assessed whether the judgements made in making accounting estimates are indicative of a potential bias and tested significant transactions that are unusual or those outside the normal course of business.

Because of the inherent limitations of an audit, there is a risk that we will not detect all irregularities, including those leading to a material misstatement in the financial statements or non-compliance with regulation. This risk increases the more that compliance with a law or regulation is removed from the events and transactions reflected in the financial statements, as we will be less likely to become aware of instances of noncompliance. The risk is also greater regarding irregularities occurring due to fraud rather than error, as fraud involves intentional concealment, forgery, collusion, omission or misrepresentation.

A further description of our responsibilities is available 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 charitable company’s members as a body, in accordance with Chapter 3 of Part 16 of the Companies Act 2006 and section 44(1)(c) of the Charities and Trustee Investment (Scotland) Act 2005. Our audit work has been undertaken so that we might state to the charitable company’s members 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 charitable company and the charitable company’s members as a body, for our audit work, for this report, or for the opinions we have formed.

Fleur Holden (Senior Statutory Auditor)

30.05.2022

for and on behalf of Sayer Vincent LLP, Statutory Auditor

Invicta House, 108-114 Golden Lane, LONDON, EC1Y 0TL

Sayer Vincent LLP is eligible to act as auditor in terms of section 1212 of the Companies Act 2006.

We reviewed any reports made to regulators.

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Financial statements For the year ended 31 December 2021

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Statement of Financial Activities

Statement of Financial Activities including income and expenditure account for the year ended 31 December 2021.

----- Start of picture text -----
2021 2020
----- End of picture text -----

Unrestricted
funds		 Designated
funds		 Restricted
funds		 Total Unrestricted
funds		 Designated
funds		 Restricted
funds		 Total
Notes £ £ £ £ £ £ £ £
Income from:
Donations & legacies 2 4,261,175 - 347,477 4,608,652 3,814,335 - 468,926 4,283,261
Charitable activities 20,441 - - 20,441 18,210 - - 18,210
Other trading activities 3 8,641,059 - 12,945 8,654,004 6,903,611 75,771 46,491 7,025,873
Investments 4 14,564 - - 14,564 47,403 - - 47,403
Other 19,740 - - 19,740 38,150 - - 38,150
────── ────── ────── ────── ────── ────── ────── ──────
Total income 12,956,979 - 360,422 13,317,410 10,820,709 75,771 515,417 11,412,897
────── ────── ────── ────── ────── ────── ────── ──────
Expenditure on:
Raising funds 6 10,614,818 - - 10,614,818 10,935,662 - - 10,935,662
Charitable activities 6 1,604,625 - 280,573 1,885,198 1,452,433 821,551 573,782 2,847,766
────── ────── ────── ────── ────── ────── ────── ───────
Total expenditure 12,219,443 - 280,573 12,500,016 12,388,095 821,551 573,782 13,783,428
────── ────── ────── ────── ────── ────── ────── ───────
Net income / (expenditure) 737,536 - 79,849 817,385 (1,566,386) (745,780) (58,365) (2,370,531)
Transfer between funds 624,292 (215,950) (408,342) - 1,473,695 (1,395,027) (78,668) -
────── ────── ────── ────── ────── ────── ────── ──────
Net movement in funds 1,361,828 (215,950) (328,493) 817,385 (92,691) (2,140,807) (137,033) (2,370,531)
────── ────── ────── ────── ────── ────── ────── ──────
Reconciliation of funds:
Total funds brought forward 2,138,497 765,950 76,543 2,980,990 2,231,188 2,906,757 213,576 5,351,521
────── ────── ────── ────── ────── ────── ────── ──────
Total funds carried forward 3,500,325 550,000 (251,950) 3,798,375 2,138,497 765,950 76,543 2,980,990
══════ ══════ ══════ ══════ ══════ ══════ ══════ ══════

All operations are continuing. The Statement of Financial Activities also complies with the requirements for an income and expenditure account under the Companies Act 2006.

The notes on pages 83–109 form part of these financial statements.

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Balance sheet

Balance sheet as at 31 December 2021.

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2021 2020
----- End of picture text -----

Notes £ £ £ £
Fixed assets
Tangible fxed assets 10 1,009,272 1,077,946
Programme related investment 11 1 1
Investment in subsidiaries 12 2 2
────── ──────
1,009,275 1,077,949
Current assets
Fixed assets held for sale 74,167 167,960
Stocks 1,321 5,910
Debtors 13 1,942,888 1,616,619
Cash at bank and in hand 4,967,810 5,076,553
────── ──────
6,986,186 6,867,042
Creditors: amounts falling due within
one year 14 (3,861,818) (4,182,719)
────── ──────
Net current assets 3,124,368 2,684,323
────── ──────
Total assets less current liabilities 4,133,643 3,762,272
Creditors: amounts falling due after 15
more than one year (147,320) (599,474)
Provision for liabilities (187,948) (181,808)
────── ──────
Total net assets 3,798,375 2,980,990
══════ ══════

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2021 2020
----- End of picture text -----

The funds of the charity
Restricted income funds 17 (251,950) 76,543
Unrestricted funds
Designated funds 18 550,000 765,950
General funds 18 3,500,325 2,138,497
────── ──────
Total unrestricted funds 4,050,325 2,904,447
────── ──────
Total funds 3,798,375 2,980,990
══════ ══════

Company registration number 4118259

The accounts were approved by the Board on 27.4.2022 and signed on their behalf by:

Jim Irvine Joanne Merchant Chair of Trustee Board Treasurer

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Statement of cash flows

Statement of cash flows for the year ended 31 December 2021.

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2021 2021 2020 2020
----- End of picture text -----

Notes £ £ £ £
Cash fows from operating activities
Net cash used in operating activities 20 (270,182) (1,366,471)
Cash fows from investing activities
Dividends, interest and rents
from investments 14,564 47,403
Proceeds from the sale of property,
plant and equipment 238,649 7,052
Purchase of property, plant
and equipment (91,774) (68,791)
Proceeds from sale of investments - 3,750,000
Purchase of investments - (190,840)
────── ──────
Net cash provided by
investing activities 161,439 3,544,825
────── ──────
Change in cash and cash
equivalents in the reporting period (108,743) 2,178,354
Cash and cash equivalents at the
beginning of the reporting period 5,076,553 2,898,199
────── ──────
Cash and cash equivalents at the
end of the reporting period 4,967,810 5,076,553
══════ ══════

The notes on pages 83–109 form part of these financial statements.

Notes to the financial statements

1.4 Judgements and estimates made by management

1 Accounting policies

1.1 Basis of preparation

The financial statements include judgements and estimates as defined by the accounting policies. Legacy income is recognised as probable at probate, using an estimate provided by executors. Premises service charge liabilities are estimated from information supplied by property specialists. The dilapidations provision is reviewed annually on an individual lease basis by a property specialist.

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), Charities SORP (FRS 102), the Companies Act 2006, the Charities Accounts (Scotland) Regulations 2006 as amended and the Charities and Trustees Investment (Scotland) Act 2005.

Research grants are recognised in full in the Income and Expenditure Account at the point of commitment in order to ensure no reliance on future fundraising to meet these financial commitments.

1.2 Going concern

The trustees reviewed the charity’s budget and cash flows for 1 January 2022 – 31 December 2023 in December 2021 and consider it is appropriate to prepare the 2021 accounts on a going concern basis on the basis that:

Research grants are recognised in full in the Income and Expenditure Account at the point of commitment in order to ensure no reliance on future fundraising to meet these financial commitments.

Programme related investments are impaired based on a judgement of the intrinsic value of the investment at the balance sheet date, where no market value exists.

The trustees do not consider that there are any sources of estimation uncertainty at the reporting date that have a significant risk of causing a material adjustment to the carrying amounts of assets and liabilities within the next reporting period.

1.3 Legal status of charity

The charity is a company limited by Guarantee and has no share capital. In the event of the charity being wound up, the liability in respect of the guarantee is limited to £1 per member of the charity.

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Notes to the financial statements (continued)

1.5 Income

Donations and gifts are recognised in full in the Statement of Financial Activities when receivable. Unclaimed gift aid receivable is accrued in the year to which it relates. Legacies receivable are recognised when there is entitlement, probability of receipt and is measurable. Grants are recognised in full when receivable. Gifts in kind are only included in the accounts where the trustees can ascribe a value in excess of £1,000.

Other trading income is recognised in full when received with the exception of income that is deferred where it represents a payment in advance for a specific event that will not take place until a future accounting period. This exception does not apply to sponsorship for charity challenges taking place in a future accounting period.

Claims made through the UK Government’s Coronavirus Job Retention Support Scheme are recognised as income in the period which the associated staff were furloughed. This income is considered to be unrestricted. Small business retail grants have been recognised as unrestricted income in the periods to which they relate.

1.6 Expenditure

Expenditure is accounted for on an accruals basis and has been classified under headings that aggregate all costs related to the category. Equipment purchased for use in research is written off as part of the research project costs as incurred. Expenditure on raising funds are those costs incurred in seeking voluntary contributions and running the retail operations. Charitable activities include expenditure associated with the operation of the charity and the provision of its services.

Governance costs comprise the costs relating to the general running of the charity, and include direct items such as external audit, legal advice for trustees, the cost of trustee meetings, and are included in central overhead costs. Central costs are apportioned and allocated between the cost of raising funds and charitable expenditure on the basis of central staff time allocation to the various activities.

1.7 Recognition of grant liabilities

Grants are awarded for research projects over a period of one to five years. All grants provide the right to terminate with up to three months’ notice and continuation of funding is dependent on satisfactory progress reporting and review. It is always the intention to honour the funding of all grants awarded and full grant recognition has been incorporated into these accounts as the most appropriate and prudent policy. By adopting this policy, the trustees ensure the funds for research grants have been raised in full prior to making financial commitments to research institutions.

1.8 Tangible fixed assets and depreciation

Tangible fixed assets with a value in excess of £1,000 are capitalised and stated at cost less depreciation. Depreciation is provided at rates calculated to write off the cost less estimated residual value of each asset over its expected useful life, as follows:

A review of assets is undertaken annually, and adjustments are made to the expected useful life as required. From 1 January 2009 freehold land and long leasehold buildings are assumed to have a residual value of 50%.

1.9 Programme related investment and impairment

Programme related expenditure with a value in excess of £1,000 is stated at cost less impairment. The investment held was impaired by 99.99% in 2020, with a residual holding value of £1.

1.10 Cash and short-term investments

The charity holds cash requirements for dayto-day activities in current bank accounts with HSBC, Lloyds, Santander and Clydesdale. The deposit account is held with HSBC. Shortterm investments that were held in money market deposits with Lloyds Commercial Banking were redeemed early at the start of the coronavirus pandemic. For the purposes of the cash flow statement, cash equivalents are defined as current asset investments, and short-term deposits with a maturity of less than three months, which are readily convertible into known amounts of cash.

1.11 Debtors

Trade and other debtors are recognised at the settlement amount due after any trade discount offered. Prepayments are valued at the amount prepaid net of any trade discounts due.

1.12 Creditors

Trade creditors and other payables are normally recognised at their settlement amount after allowing for any trade discount due. Payments to suppliers are within standard payment terms of 30 days. Liabilities are recognised when there is a present obligation, as a result of past events, and there is a probable future outflow of resources that can be estimated reliably.

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Notes to the financial statements (continued)

1.16 Consolidated accounts

1.13 Financial instruments

The charity only has financial assets and financial liabilities of a kind that qualify as basic financial instruments. Basic financial instruments are initially recognised at transaction value and subsequently measured at settlement value.

The accounts of DEBRA Trading Limited and DEBRA Retail Limited have not been incorporated into these accounts on the grounds that the results are not material. The profit covenanted by DEBRA Trading Limited is included in other trading activities. DEBRA Retail Limited was dormant throughout the year. This report therefore provides information about the standalone charity only. For information, the companies’ results and the investment the charity holds are shown separately in Note 12 to the financial statements.

1.14 Stock

The trustees do not consider it appropriate to recognise donated goods for resale as stock on the grounds that the cost of obtaining stock information would greatly outweigh any benefit. The costs involved would include the setting up of processes and procedures for a stock count in over 100 shops, training shop staff and volunteers in the process, software programming, and the checking and analysis of the reports produced.

1.17 Foreign currency translation

Foreign currency transactions are recorded at the exchange rate at the time of the transaction. Foreign currency assets and liabilities are translated into sterling at the exchange rate ruling at the balance sheet date. Resulting gains or losses on retranslation are included in the statement of financial activities.

All other stock is valued at the lower of cost or sales value net of selling costs.

1.15 Accumulated funds

Restricted funds are subject to specific conditions by donors as to how they may be used. Transfers between unrestricted funds and designated funds occur when the trustees approve either funds to be designated for a specific purpose, or where remaining designated funds are no longer required and are released to unrestricted funds. The exceptional circumstances of 2020 and 2021 resulted in funds being undesignated in order for the charity to continue its charitable objectives. The purposes and uses of the restricted funds and designated funds are set out in Note 17 to the financial statements.

1.18 Leases

Operating lease annual rental payments are charged to the statement of financial activities on a straight line basis over the term of the lease.

1.19 Termination payments

Termination payments either by way of redundancy or settlement agreement are recognised at the time of payment. Any payments exceeding the statutory minimum are authorised by the trustees.

2. Donations and legacies

----- Start of picture text -----
Unrestricted Restricted Total Unrestricted Restricted Total
funds funds 2021 funds funds 2020
----- End of picture text -----

£ £ £ £ £ £
Donations & gifts 1,758,535 105,013 1,863,548 1,438,777 157,348 1,596,125
Legacies receivable 8,148 4,431 12,579 219,678 37,500 257,178
Grants receivable 2,494,492 238,033 2,732,525 2,155,880 274,078 2,429,958
────── ────── ────── ────── ────── ──────
4,261,175 347,477 4,608,652 3,814,335 468,926 4,283,261
══════ ══════ ══════ ══════ ══════ ══════
Donations & gifts:
Individual donations 1,469,207 94,482 1,563,689 1,189,520 128,112 1,317,632
Corporate donations 253,525 8,025 261,550 234,413 26,488 260,901
International
donations 1,156 - 1,156 496 - 496
Events by
individuals 34,647 2,506 37,153 14,348 2,748 17,096
────── ────── ────── ────── ────── ──────
1,758,535 105,013 1,863,548 1,438,777 157,348 1,596,125
══════ ══════ ══════ ══════ ══════ ══════
Grants receivable:
Charitable trusts 61,093 238,033 299,126 82,962 274,078 357,040
Government grants 2,433,399 - 2,433,399 2,072,918 - 2,072,918
────── ────── ────── ────── ────── ──────
2,494,492 238,033 2,732,525 2,155,880 274,078 2,429,958
══════ ══════ ══════ ══════ ══════ ══════

Government grants consist of £809,812 (2020: £1,248,868) received under the Coronavirus Job Retention Scheme and £1,623,587 (2020: 824,050) received in local authority grants.

Gifts in kind of £87,206 (2020: £88,006) are included in donations and gifts. This comprises online adwords valued at £67,206 (2020: £67,206) and campaign design and consultancy valued at £20,000 (2020: £nil). In 2020 gifts in kind also included advertising in a national newspaper valued at £20,800.

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Notes to the financial statements (continued)

3. Other trading activities

2021 2020
£ £
Income 8,654,004 7,025,873
Operating expenses (9,952,625) (10,227,464)
────── ──────
Net income from fundraising activities (1,298,621) (3,201,591)
══════ ══════
The greatest income from other trading activities is derived from the operation of charity shops
selling donated goods. As at 31 December 2021 there were 105 shops trading (2020: 109). The
major categories of income and expenditure are summarised below:
Income Operating
expenses
Net income
2021		 Income Operating
expenses		 Net income
2020
£ £ £ £ £ £
Retail 7,911,357 (9,340,096) (1,428,739) 6,477,316 (9,757,368) (3,280,052)
Fundraising
events 639,431 (612,529) 26,902 429,761 (470,096) (40,335)
Miscellaneous
trading 103,216 - 103,216 118,796 - 118,796
────── ────── ────── ────── ────── ──────
8,654,004 (9,952,625) (1,298,621) 7,025,873 (10,227,464) (3,201,591)
══════ ══════ ══════ ══════ ══════ ══════
2021 2020
£ £
Income 8,710,081 7,168,026
Operating expenses (9,340,096) (9,757,368)
────── ──────
Net expenditure on fundraising activities (630,015) (2,589,342)
══════ ══════
4. Investment income
2021 2020
£ £
Interest receivable 3 29,940
Rent of property 14,561 17,463
────── ──────
Total investment income 14,564 47,403
══════ ══════

Rental income was received from one freehold shop and two flats situated above properties, which were acquired in 2009.

Retail income excludes income of £732,522 (2020: £606,091) from retail Gift Aid and retail donations, which are recognised as donations on the SOFA and not income from other trading activities. Retail income also excludes retail gift aid commission of £33,236 (2020: £84,619) which is recognised in miscellaneous trading. In 2020 and 2021 the COVID-19 pandemic had a significant impact on gross retail income. The profit covenanted by DEBRA Trading Limited of £69,980 (2020: £34,176) is recognised in miscellaneous trading.

The table below reflects a true statement of total retail income, including retail Gift Aid, commission and retail donations.

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Notes to the financial statements (continued)

5. Grants payable

Expenditure on charitable activities include grants payable to third parties as detailed in Note 22. There were 179 (2020: 154) Community Support grants totalling £36,752 (2020: £38,071) made through the Community Support programme. All other grants were payable to institutions as detailed in Note 22.

Routine Healthcare and Community Support work is considered on-going and for which no future commitment is provided. Research and clinical projects have a finite life and at 31 December 2021 the trustees had authorised a commitment to support research grants over the next three years to the sum of £548,814 (2020: £1,183,468) and clinical projects to the sum of £125,948 (2020: £138,105).

The total future commitment is currently committed to be spent as follows:

----- Start of picture text -----
Total Total
2021 2020
----- End of picture text -----

£ £
Within one year 527,442 722,099
Within two – three years 147,320 589,406
Within four – fve years - 10,068
────── ──────
Provided within the grants payable creditor (notes 14 and 15) 674,762 1,321,573
══════ ══════

6. Expenditure

----- Start of picture text -----
Staff Grants Dep’n & Overhead Other costs Total
costs payable amort’n allocation 2021
----- End of picture text -----

£ £ £ £ £ £
Raising funds
Donations & legacies 381,817 - - 164,432 115,943 662,192
Other trading activities 5,338,778 - 61,319 314,047 4,238,482 9,952,626
────── ────── ────── ────── ────── ──────
5,720,595 - 61,319 478,478 4,354,425 10,614,818
────── ────── ────── ────── ────── ──────
Charitable activities
Research 274,861 168,806 - 31,262 9,555 484,484
Healthcare 60,235 172,668 - 19,858 - 252,761
Community support 607,601 36,752 - 42,710 - 687,063
Respite breaks - - 48,016 - 46,926 94,942
Public education 243,566 - - 31,934 90,448 365,948
────── ────── ────── ────── ────── ──────
1,186,263 378,226 48,016 125,765 146,929 1,885,198
────── ────── ────── ────── ────── ──────
6,906,858 378,226 109,335 604,243 4,501,354 12,500,016
══════ ══════ ══════ ══════ ══════ ═══════

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Notes to the financial statements (continued)

----- Start of picture text -----
Staff Grants Dep’n & Overhead Other costs Total
costs payable amort’n allocation 2020
----- End of picture text -----

£ £ £ £ £ £
Raising funds
Donations & legacies 415,507 - - 174,569 118,122 708,198
Other trading activities 5,703,336 - 78,022 301,865 4,144,241 10,227,464
────── ────── ────── ────── ────── ──────
6,118,843 - 78,022 476,434 4,262,363 10,935,662
────── ────── ────── ────── ────── ──────
Charitable activities
Research 339,024 572,731 - 38,798 230,545 1,181,098
Healthcare 80,880 241,967 - 23,990 - 346,837
Community support 651,422 38,072 - 56,432 - 745,926
Respite breaks - - 48,016 - 45,451 93,467
Public education 367,838 - - 43,441 69,159 480,438
────── ────── ────── ────── ────── ──────
1,439,164 852,770 48,016 162,661 345,155 2,847,766
────── ────── ────── ────── ────── ──────
1,439,164 852,770 126,038 639,095 4,607,518 13,783,428
══════ ══════ ══════ ══════ ══════ ═══════

Net income / (expenditure) for the year is stated after charging:

----- Start of picture text -----
2021 2020
----- End of picture text -----

£ £
Operating leases 1,246,982 1,279,426
Auditors’ remuneration 20,000 19,313
Non-audit services 3,600 -
Depreciation of tangible fxed assets 159,256 158,451
Defned contribution pension costs 314,405 345,016
Exchange differences 27,809 (20,916)
══════ ══════

7. Cost allocation

All central overhead costs are allocated to activities on the basis of staff time, and are detailed below:

----- Start of picture text -----
2021 2020
----- End of picture text -----

£ £
Staff costs 1,403,077 1,521,167
Overheads
Offce premises rent 62,789 62,891
Service charges, utilities & cleaning 57,363 57,788
Equipment costs 144,088 148,634
Postage, printing, stationery, telephone & fax 64,585 54,502
Insurance costs 110,401 97,435
Legal, professional & consultancy fees 139,356 135,198
Depreciation 38,017 36,829
Proft on disposal (143,660) -
Irrecoverable VAT 22,348 24,216
Bank charges 9,744 6,755
Sundry expenses 58,201 (8,681)
Governance costs:
Audit, non-audit and internal audit fees 38,600 19,313
Miscellaneous costs 2,411 4,215
────── ──────
604,243 639,095
────── ──────
Total allocation 2,007,320 2,160,262
══════ ══════

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Notes to the financial statements (continued)

8. Trustees

None of the trustees received any remuneration from DEBRA during the period, but one of them was reimbursed a total of £127 (2020: 9 – £2,259) for travel expenses. No trustees received community grants in 2021 (2020: Andy Grist received £15). The aggregate figure for trustee donations in 2021 was £447 (2020: £2,158). In addition, many trustees have supported DEBRA by attending events.

Insurance has been purchased to protect DEBRA, its employees and trustees from professional and legal liability of trustees and employees in the event of a claim that arises from the actions of such persons acting in such capacity at a cost of £4,025 (2020: £2,253), as allowed under section 4.3.3 in DEBRA’s Articles of Association.

9. Employees

At the end of the year the number of employees per department was:

----- Start of picture text -----
2021 2021 2020 2020
----- End of picture text -----

No. FTE No. FTE
Research 1 1.0 4 1.6
Healthcare* - - - -
Community Support 13 12.0 10 9.7
Fundraising & Comms 16 15.6 19 17.2
Retail 304 222.2 304 221.6
Management & Administration 22 19.2 16 14.2
────── ────── ────── ──────
356 270.0 353 264.3
══════ ══════ ══════ ══════

The average number of employees during the period was:

----- Start of picture text -----
2021 2021 2020 2020
----- End of picture text -----

No. FTE No. FTE
Research 1 1.0 5 2.9
Healthcare* - - - -
Community Support 13 12.3 12 11.2
Fundraising & Comms 16 15.8 20 18.2
Retail 299 216.4 321 232.5
Management & Administration 19 17.6 18 15.7
────── ────── ────── ──────
348 263.1 376 280.5
══════ ══════ ══════ ══════

*These numbers exclude healthcare staff funded through grants to external organisations as detailed in Note 19.

Staff employed by external institutions and funded through research grants are also excluded.

----- Start of picture text -----
2021 2020
----- End of picture text -----

£ £
Wages & salaries 5,960,400 6,231,757
Social security costs 392,291 395,899
Pension costs 314,405 312,098
────── ──────
Total allocation 6,667,096 6,939,754
══════ ══════

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Notes to the financial statements (continued)

The charity does not operate any defined benefit pension scheme. The charity makes payments to certain employees’ personal pension plans. Payments of £338,399 (2020: £313,959) were made in the year and charged to the SOFA in the period they were due. At the year end there remained £nil (2020: £24,016) unpaid.

There are adequate systems in place to manage expenses and they do not form part of remuneration.

The following members of staff received emoluments above £60,000:

----- Start of picture text -----
2021 2020
----- End of picture text -----

No. No.
Between £60,001 - £70,000 3 3
Between £70,001 - £80,000 1 -
Between £80,001 - £90,000 - 2
Between £110,001 - £120,000 1 -
Between £170,001 - £180,000 - 1

Redundancy and compensation payments, which were all paid in year, totalled £16,739 (2020: £160,487).

The aggregate pay of key management personnel, including employer’s NI and pension contributions was £711,022 (2020: £736,268). The aggregate employer’s pension contribution for key management personnel was £61,489 (2020: £59,304)

In respect of the above employees, contributions for the year into a defined contribution pension scheme totalled £59,064 (2020: £53,246), and there are retirement benefits accruing for five (2020: six) employees under a defined contribution scheme.

10. Fixed assets

Tangible fixed assets

----- Start of picture text -----
Shop Mobile Fixtures, Freehold Long Total
equipment homes fittings & land & leasehold
equipment buildings land &
buildings
----- End of picture text -----

£ £ £ £ £ £
Cost:
At 1 January 2021 437,742 480,162 321,118 578,347 82,500 1,899,869
Additions 13,858 - 77,916 - - 91,774
Disposals (89,460) - (3,991) - - (93,451)
────── ────── ────── ────── ────── ──────
At 31 December 2021 362,140 480,162 395,043 578,347 82,500 1,898,192
────── ────── ────── ────── ────── ──────
Depreciation:
At 1 January 2021 284,949 197,599 165,027 154,548 19,800 821,923
Charge for the year 56,840 48,016 40,231 12,879 1,650 159,256
Disposals (88,268) - (3,991) - - (92,259)
────── ────── ────── ────── ────── ──────
At 31 December 2021 253,161 245,615 201,267 167,427 21,450 888,920
────── ────── ────── ────── ────── ──────
Net book value:
1 January 2021 152,793 282,563 156,091 423,799 62,700 1,077,946
────── ────── ────── ────── ────── ──────
31 December 2021 108,979 234,547 193,776 410,920 61,500 1,009,272
══════ ══════ ══════ ══════ ══════ ══════

The Head Office fit out costs and mobile equipment have been included in the fixtures, fittings and equipment category.

The trustees agreed to sell one freehold shop during 2019, and a flat above another shop in 2020. These were transferred to current assets in 2020. The flat was sold in October 2021 and the freehold shop was sold in January 2022.

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Notes to the financial statements (continued)

11. Programme related investment

----- Start of picture text -----
2021 2020
----- End of picture text -----

£ £
Investment in Fibrx Derm Inc
Net investment value brought forward 1 -
Purchase of investment - 190,840
Impairment charge - (190,839)
────── ──────
Net investment value carried forward 1 1
══════ ══════

The trustees invested £190,840 ($250,000) in Fibrx Derm Inc, a US biotech company, purchasing 203,252 series A-2 convertible preferred stock, at a price of $1.23 per share. This investment supported the development of a new treatment to help wound healing in patients suffering from Dystrophic Epidermolysis Bullosa. The purpose of this investment was in furtherance of the charitable objectives of the charity, and no financial return was expected. The value of the investment has been impaired by 99.99% as the most prudent course of action.

12. Investment in subsidiaries

DEBRA had two 100% owned subsidiary companies incorporated in England and Wales at 31 December 2021 (2020: two). These are DEBRA Trading Ltd (company number: 2487114), whose principal activities are the sale of promotional items on behalf of DEBRA, a house clearance service and corporate sponsorship; and DEBRA Retail Ltd which is dormant.

Financial information for these entities for the year ended 31 December 2021:

----- Start of picture text -----
2021 2020
----- End of picture text -----

DEBRA Trading DEBRA DEBRA Trading DEBRA
Ltd Retail Ltd Ltd Retail Ltd
£ £ £ £
Share capital 2 1 2 1
Turnover 119,267 - 96,247 -
Total expenses 49,287 - 62,070 -
Gift aid to DEBRA 69,980 - 34,176 -
Proft / (loss) for the year - - - -
Net assets / (liabilities) 2 1 2 1
══════ ══════ ══════ ══════

13. Debtors

----- Start of picture text -----
2021 2020
----- End of picture text -----

£ £
HMRC 174,344 281,158
Amounts due from group undertakings 69,980 34,176
Other debtors 489,879 402,321
Accrued income 681,184 363,233
Prepayments 527,501 535,731
────── ──────
1,942,888 1,616,619
══════ ══════

Amounts due from HMRC are VAT receivable of £174,344 (2020: £216,811), plus £nil (2020: £64,347) from the Coronavirus Job Retention Scheme. Other debtors includes £301,908 (2020: £266,825) due for shared research grants. Accrued income includes gift aid of £344,460 (2020: £147,660) due from HMRC.

Total future minimum lease receivable in 2021 was £nil (2020: £3,413), in respect of one shop and one flat above a shop.

14. Creditors: amounts falling due within one year

----- Start of picture text -----
2021 2020
----- End of picture text -----

£ £
Trade creditors 427,092 678,754
Grants payable 2,236,649 2,158,657
Other creditors 220,134 308,617
Taxation and social security 113,353 92,476
Accruals 845,920 917,315
Deferred income 18,670 26,900
────── ──────
3,861,818 4,182,719
══════ ══════

Grants payable includes £548,832 (2020: £790,811) relating to future commitments and £1,687,817 (2020: £1,436,558) relating to outstanding invoices for work done.

There was deferred income in 2021 of £18,670 (2020: £26,900), representing income for events which would have to be repaid in the event of cancellation.

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Notes to the financial statements (continued)

15. Creditors: amounts falling due over one year

2021 2020
£ £
Grants payable 147,320 599,474
────── ──────
147,320 599,474
══════ ══════
2021 2020
£ £
Dilapidations provision
Provision brought forward 181,808 241,812
Charges 6,140 21,420
Release of provision - (81,422)
────── ──────
Provision carried forward 187,948 181,808
══════ ══════

16. Other financial commitments

The following payments are committed to be paid in the future in respect of operating leases:

----- Start of picture text -----
2021 2020 2021 2020
----- End of picture text -----

17. Analysis of funds: restricted funds

----- Start of picture text -----
Balance at Income Expenditure Transfer to Balance at
1 January general fund 31 December
2021 2021
----- End of picture text -----

£ £ £ £ £
Research - 176,067 (118,065) (408,342) (350,340)
Healthcare 5,600 30,362 (15,337) - 20,625
Community support & respite 70,943 153,993 (147,171) - 77,765
Public Education - - - - -
────── ────── ────── ────── ──────
76,543 360,422 (280,573) (480,342) (251,950)
══════ ══════ ══════ ══════ ══════
Balance at Income Expenditure Transfer to Balance at
1 January general fund 31 December
2020 2020
£ £ £ £ £
Research - 182,771 (104,103) (78,668) -
Healthcare 79,477 26,223 (100,100) - 5,600
Community support & respite 134,099 292,599 (355,755) - 70,943
Public Education - 13,824 (13,824) - -
────── ────── ────── ────── ──────
213,576 515,417 (573,782) (78,668) 76,543
══════ ══════ ══════ ══════ ══════
Leases of Leases of Other Other
land and land and
buildings buildings
£ £ £ £
Within one year 1,233,867 1,264,152 13,115 15,274
Between one – fve years 1,539,926 1,170,587 16,217 29,332
After fve years - 5,250 - -
────── ────── ────── ──────
2,773,793 2,439,989 29,332 44,606
══════ ══════ ══════ ══════

There were capital commitments of £nil (2020: £1,200) at year end, falling due within one year.

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Notes to the financial statements (continued)

Restricted funds comprised:

----- Start of picture text -----
2021 2020
----- End of picture text -----

£ £
Healthcare - EB nurses 15,025 -
Healthcare - Birmingham Children’s Hospital Specialist Bath 5,600 5,600
Community Support - Community Support Manager for Scotland 21,542 37,259
Community Support - Community Support Manager Post - 10,496
Community Support - Community Support in Bedfordshire 5,121 -
Community Support - Community Support in Berkshire 8,037 8,048
Community Support - Support Grants in Hampshire 5,502 5,502
Community Support - Support Grants in Northamptonshire - 962
Community Support - Support Grants in Scotland 1,934 1,934
Community Support - Support Grants in South East England 15,851 -
Community Support - Support Grants in South Gloucestershire 1,054 1,356
Community Support - other restricted funds 18,724 5,386
────── ──────
98,390 76,543
Less:
Research - COVID Medical Research Charity Support Fund* (350,340) -
────── ──────
Net restricted funds (251,950) 76,543
══════ ══════

*An agreement was signed with the Medical Research Council who agreed to provide funding for specific research projects already in progress. The funds were received in 2022. The related costs were recognised in the income statement and charged to the general fund on grant award in accordance with DEBRA accounting policies. Therefore, a transfer from restricted funds to general funds is required in 2021 representing spend already incurred.

18. Analysis of funds: unrestricted funds

----- Start of picture text -----
Balance at 1 Income Expenditure Transfers Balance at 31
January 2021 December 2021
----- End of picture text -----

£ £ £ £ £
Future research grants 515,950 - - (515,950) -
Nursing continuity 250,000 - - - 250,000
IT Strategy - - - 50,000 50,000
Procurement - - - 50,000 50,000
NHS Digital - - - 200,000 200,000
────── ────── ─────── ─────── ──────
Total designated funds 765,950 - - (215,950) 550,000
General fund 2,138,497 12,956,979 (12,219,443) 624,292 3,500,325
────── ────── ─────── ─────── ──────
Total unrestricted funds 2,904,447 12,956,979 (12,219,443) 408,342 4,050,325
══════ ══════ ═══════ ═══════ ══════
Balance at 1 Income Expenditure Transfers Balance at 31
January 2020 December 2020
£ £ £ £ £
Future research grants 2,618,290 - (763,340) (1,339,000) 515,950
Nursing continuity 250,000 - - - 250,000
EB:2021 Conference 38,467 75,771 (58,211) (56,027) -
────── ────── ─────── ─────── ──────
Total designated funds 2,906,757 75,771 (821,551) (1,395,027) 765,950
General fund 2,231,188 10,821,809 (12,388,095) 1,473,695 2,138,497
────── ────── ─────── ─────── ──────
Total unrestricted funds 5,137,945 10,897,480 (13,209,646) 78,668 2,904,447
══════ ══════ ═══════ ═══════ ══════

The future research grants fund was fully un-designated in 2021 in response to the COVID-19 Pandemic. The trustees resolved in October 2021 that the historical practice of designating all amounts in excess of minimum required cash-backed free reserves for future research would not be re-established. Instead, funds would be designated for specific project opportunities envisaged within the overall Five-Year Strategy. In 2021 £200,000 (2020: £nil) has been designated to fund the NHS Digital Data project for two years.

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Notes to the financial statements (continued)

The designated fund for nursing continuity has been established as a contingency in the event of future NHS funding withdrawal, and the Trustees maintained a balance of £250,000 in this fund in 2021.

Two amounts of £50,000 (2020: £nil) was designated in 2021 to fund procurement and IT work furthering modernisation of back office practices as set out in the Two-Year Business Plan.

19. Analysis of net assets between categories of funds

Fund balances at 31 December 2021 are represented by:

----- Start of picture text -----
Unrestricted Designated Restricted Total
funds funds funds
----- End of picture text -----

£ £ £ £
Fixed assets 1,009,275 - - 1,009,275
Current assets 6,688,136 550,000 (251,952) 6,986,186
Creditors:<1 year (3,861,810) - - (3,861,818)
Creditors:>1 year (335,268) - - (335,268)
────── ────── ────── ──────
3,500,325 550,000 (251,952) 3,798,375
══════ ══════ ══════ ══════

Fund balances at 31 December 2020 are represented by:

----- Start of picture text -----
Unrestricted Designated Restricted Total
funds funds funds
----- End of picture text -----

£ £ £ £
Fixed assets 1,077,949 - - 1,077,949
Current assets 6,024,549 765,950 76,543 6,867,042
Creditors:<1 year (4,182,719) - - (4,182,719)
Creditors:>1 year (781,282) - - (781,282)
────── ────── ────── ──────
2,138,497 765,950 76,543 2,980,990
══════ ══════ ══════ ══════

20. Reconciliation of net income to net cash flow from operating activities

----- Start of picture text -----
2021 2020
----- End of picture text -----

£ £
Net income / (expenditure) for the reporting period
(as per the statement of fnancial activities)		 817,385 (2,370,531)
Depreciation and amortisation charges 159,256 162,872
Impairment of programme related investment - 190,839
Dividends, interest and rents from investments (14,564) (47,403)
Proft / (loss) on disposal of fxed assets (143,663) (6,777)
Decrease in stock 4,589 390
(Increase) / decrease in debtors (326,269) 310,082
(Decrease) / increase in creditors (766,914) 394,057
────── ──────
Net cash used in operating activities (270,182) (1,366,471)
══════ ══════

20 Analysis of cash and cash equivalents

At 1 January
2021		 Cash fows At 31
December
2021
£ £ £
Cash at bank and in hand 5,076,553 (108,743) 4,967,810
────── ────── ──────
5,076,553 (108,743) 4,967,810
══════ ══════ ══════

An analysis of changes in net debt note has not been prepared on the basis that DEBRA only has cash and cash equivalents, the movement on which is shown above.

104 DEBRA Trustees’ Annual Report & Accounts 2021

www.debra.org.uk 105

Notes to the financial statements (continued)

22. Grants to institutions

Research grants:

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2021 2020
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Total paid Total paid Total paid Total paid
in year to date in year to date
£ £ £ £
University of Dundee
Clinical fellow funding 146,115 650,589 89,572 504,474
University of Glasgow
Re TGF-beta mediated tumour promotion in RDEB 64,001 221,139 78,525 157,138
Guy’s and St Thomas’ Hospital, London
Clinical endpoints study re EB therapy evaluation 160,956 694,557 120,717 533,601
Stem cell therapy trial re treating debilitating itch 31,946 497.360 113,262 465,414
Wound care and its complications in patients
with EB - - - -
────── ────── ────── ──────
192,902 1,191,917 233,979 999,015
────── ────── ────── ──────
Thomas Jefferson University,
Philadelphia, USA
Phase 2 clinical trial of Rigosertib for RDEB SCC - 470,490 40,984 470,490
Univ. Birmingham Dental School & Hospital
Characterisation of skin microbiome in EB patients 31,359 296,289 113,500 264,930
Gait Analysis in EB Simplex 15,344 15.344 (11,508) -
Clinical Fellowship 30,622 65,736 35,114 35,114
Novel spray to treat mucosal scarring 76,201 101,607 25,406 25,406
────── ────── ────── ──────
153,526 478,976 162,512 325,450
────── ────── ────── ──────
University of Cologne
Re immunity in wound healing
complications RBEB 23,688 164,706 57,462 141,018

Grants to institutions continued:

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2021 2020
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Total paid Total paid Total paid Total paid
in year to date in year to date
£ £ £ £
Universitair Medisch Centrum Groningen
Re phyto-cannabinoid treatment of pain in EB - 159,025 47,300 159,025
Instituto Dermopatico deli’Immacolata Rome
Re histone deacetylase inhibitors for RDEB 4,627 64,407 32,739 59,780
King’s College London
Preclinical studies of lentiviral-mediated COL7A1
gene therapy 43,394 188,583 84,044 145,189
Great Ormond Street Institute of Child Health
Respiratory cell & gene therapy for children
with JEB 65,844 65,844 - -
Bambino Gesù Children’s Hospital
MicroRNAs expression profling, activity
and therapeutic perspectives 30,876 45,556 14,680 14,680
University of Edinburgh
Re Kindlin-1 loss in squamous cell carcinoma 41,379 51,667 10,288 10,288
New York Medical College
Re innate & adaptive immune mechanisms
in RDEB 69,588 104,232 34,644 34,644
────── ────── ────── ──────
Total research grants paid in year 835,941 3,857,132 886,719 3,021,191
══════ ══════ ══════ ══════

106 DEBRA Trustees’ Annual Report & Accounts 2021

www.debra.org.uk 107

Notes to the financial statements (continued)

Healthcare projects:

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2021 2020
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Total paid Total paid in
in year year
£ £
Great Ormond Street Hospital for Sick Children
Clinical nurse specialists in EB 83,525 66,176
Guys & St Thomas’ Hospital London
Adult EB support nurses 58,388 79,647
Clinical best practice guidelines on parenteral and enteral feeding - 39,996
Birmingham Children’s Hospital 30,755 56,148
Other 12,157 48,108
────── ──────
184,825 290,075
══════ ══════

Reconciliation of provision continued:

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2020
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Research grants Healthcare Community Total
grants Supportgrants
£ £ £ £
Provision brought forward 1,428,243 186,213 - 1,614,456
New commitments 572,731 241,967 (38,072) 852,770
Co-funding contributions 69,213 - - 69,213
Spend in year (886,719) (290,075) (38,072) (1,214,866)
────── ────── ────── ──────
Provision carried forward 1,183,468 138,105 - 1,321,573
══════ ══════ ══════ ══════

23. Related parties

During the year, the charity charged management charges totalling £11,300 including VAT (2020: £7,200) to its subsidiary, DEBRA Trading Limited.

Reconciliation of provision:

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2021
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Research Healthcare Community Total
grants grants Supportgrants
£ £ £ £
Provision brought forward 1,183,468 138,105 - 1,321,573
New commitments 168,806 172,668 (36,752) 378,226
Co-funding contributions 32,481 - - 32,481
Spend in year (835,941) (184,825) (36,752) (1,057,815)
────── ────── ────── ──────
Provision carried forward 548,814 125,948 - 674,762
══════ ══════ ══════ ══════

108 DEBRA Trustees’ Annual Report & Accounts 2021

www.debra.org.uk 109

Reference and administrative details

Patrons and ambassadors

Additional details

Royal Patron

Charity Commission Number 1084958

HRH The Countess of Wessex

Life Patron

Philip Evans

OSCR Number SC039654

President

Simon Weston CBE

Company Number

Vice Presidents

4118259

Graeme Souness, Frank Warren

Registered office & principal address DEBRA, The Capitol Building, Oldbury, Bracknell, RG12 8FZ

Trustees

Chair

Auditor

Jim Irvine

Sayer Vincent LLP, Invicta House, 108-114 Golden Lane, London EC1Y 0TL

Treasurer

Joanne Merchant

Banker

Vice-Chairs

HSBC, Thames Valley Business Banking, Hanborough House, Wallbrook Court, North Hinksey, Oxford, OX2 0QS

David Bendor-Samuel (from 29.04.2021),

Carly Fields

Solicitor

Graham Marsden (until 29.04.2021)

Stone King, 91 Charterhouse Street, London, EC1M 6HR

Trustees

Simone Bunting (from 27.05.2021)

Rebecca Cresswell

Simon Cuzner (until 27.05.2021 Josie Godfrey (from 08.08.2021) Andrew Grist (until 01.03.2022)

Christo Kapourani

Abbreviations

CPG Clinical Practice Guideline CEO Chief Executive Officer EB Epidermolysis Bullosa EDI Equality, Diversity & Inclusion F&E Furniture & Electrical retail store GDPR General Data Protection Regulation HMRC HM Revenue and Customs HR Human Resources H&S Health & Safety IOSH Institute of Occupational Safety and Health IT Information Technology k thousand m million NHS National Health Service pa per annum SMT Senior Management Team SOFA Statement of Financial Activities y on y year on year

Vivien Mundy

Timothy Powell (until 27.05.2021)

Douglas Rouse

Simon Talbot (from 27.05.2021) Michael Thomas

110 DEBRA Trustees’ Annual Report & Accounts 2021

www.debra.org.uk 111

DEBRA funds pioneering research, specialist healthcare, international best practice and lifelong care and support to the EB Community.

Our vision is a world where no one suffers with Epidermolysis Bullosa (EB).

Together we #FightEB.

www.debra.org.uk

Patron: HRH The Countess of Wessex GCVO

01344 771961 | debra@debra.org.uk | DEBRA, The Capitol Building, Oldbury, Bracknell, Berkshire RG12 8FZ

DEBRA A charity registered in England and Wales (1084958) and Scotland (SC039654) Company limited by guarantee registered in England (4118259). VAT Number 689 2482 79