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2021-12-31-accounts

Haemochromatosis UK Trustees’ Annual Report & Accounts

HAEMOCHROMATOSIS UK TRUSTEES’ ANNUAL REPORT & ACCOUNTS

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HAEMOCHROMATOSIS UK TRUSTEES’ ANNUAL REPORT & ACCOUNTS
For the year ending 31 December 2021
Published July 2022
© Haemochromatosis UK
www.haemochromatosis.org.uk
Statutory Information
We are Haemochromatosis UK.
Registered as Charity number 1001307 and SCO41701
Company Limited by Guarantee No. 2541361
Registered office
Henrith Business Centre, 3 Enterprise Way,
Pinchbeck, Lincolnshire PE11 3YR
Regulators
Independent Financial Examiner
Community Accounting Plus
Units 1 and 2, Northwest
41 Talbot Street
Nottingham
NG1 5GL
Trustees at 31st May 2022
Katy Burns MBE, Chair of Trustees (from 11 December 2021)
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Haemochromatosis UK Trustees’ Annual Report and Accounts For the year ending 31 December 2021 Published July 2022 © Haemochromatosis UK www.haemochromatosis.org.uk

We are Haemochromatosis UK. Registered as Charity number 1001307 and SCO41701 Company Limited by Guarantee No. 2541361

Charity Commission for England and Wales (Charity No. 1001307) The Office of the Scottish Charity Regulator (Charity No. SCO41701) Companies House (Company Limited by Guarantee No. 2541361)

Katy Burns MBE, Chair of Trustees (from 11 December 2021) & Safeguarding Trustee Rodger Houghton, Finance Trustee Catherine Wiggins, Finance Trustee Kevin King, Legal Trustee Gillian Fachiri, Board Observer2

CONTENTS

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Section Contents Page
2 Introduction from the Chair 4
3 A message from the Chief Executive 5
4 Trustees’ report for 2021 10
5 Governance 14
6 Finance 16
7 Accounts 23
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HAEMOCHROMATOSIS UK TRUSTEES’ ANNUAL REPORT & ACCOUNTS

HAEMOCHROMATOSIS UK TRUSTEES’ ANNUAL REPORT & ACCOUNTS

2. INTRODUCTION FROM THE CHAIR

The trustees are pleased to report that, despite the challenges of the on-going Covid-19 pandemic, HUK has managed to sustain most of its activities.

There has been further development of the important work to increase the diagnosis of haemochromatosis and continue to support people whose lives are affected by the condition.

One of the most impactful aspects of this was the opportunity to provide access to genetic testing, both for HUK members and the public. Work has continued on the key projects plus the community and education work as detailed in this report.

The trustees wish to express their gratitude to the Chief Executive, Neil McClements, and his small team of staff for their continuing hard work in another challenging year. We welcome two new members of staff, Neil Irwin (Fundraiser) and Diogo Gomes (Advanced Nurse Practitioner) and our new trustees, Kevin King and Catherine Wiggins, and Gillian Fachiri as Board Observer, who bring valuable skills and experience to the charity.

Tim Spring has retired from his role as the Chair and the trustees wish to extend their sincere gratitude to him for his commitment and significant contributions to the work of HUK and to the Board. Kim Hicks has stepped down as trustee from May 2021; we record our thanks for her support over the year.

I take on the role of Chair with my sincere thanks to both Tim and Neil for their generous support.

Katy Burns MBE Chair of the Board of Trustees

3. A MESSAGE FROM THE CHIEF EXECUTIVE

After the Covid challenges of 2020, we hoped for an easier 2021. But it was not to be...

Despite the continuing ravages of the pandemic, we’ve been working diligently to progress the interests of people affected by genetic haemochromatosis (GH). This has included a significant expansion of our membership as well as the launch of several exciting initiatives.

Membership

Since our earliest beginnings in 1990, we have been a membership organisation. Whilst we work to support anyone affected by genetic haemochromatosis, member or not, we particularly value our members for keeping us true to our mission.

We were pleased to note during 2021 an almost 50% increase in membership over the preceding two years. We increasingly welcome members from outside the UK – as far as Singapore and South America.

If you are not already a member of the charity, may I encourage you to join us – together we are stronger.

Our events programme

The Covid-19 pandemic continued to limit our face-to-face activities during the year. We took the opportunity to raise awareness at the Balmoral Show (80,000 visitors), the Royal College of GPs Conference (2,000 attendees) and the Nursing & Primary Care Best Practice Show (7,000 attendees).

Given the on-going pandemic response, we continue to look for opportunities to raise awareness amongst clinicians and the general public wherever such events are possible.

Our clinical education programme

Members frequently share their concerns that clinicians are less familiar with GH than they might be. We’re trying to address this in several ways.

Our popular “lunch and learn” sessions for GPs have developed into a broader programme of talks for medical students and specialist trainees. There’s a real interest in GH amongst people early in their careers, something we welcome.

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HAEMOCHROMATOSIS UK TRUSTEES’ ANNUAL REPORT & ACCOUNTS

In May, with the support of the Royal College of Nursing (RCN), we launched a new eLearning course for nurses and healthcare practitioners. This initiative is accredited by the RCN and has trained over 400 nurses in the first six months of operation. We continue to promote this initiative with clinicians through our day-to-day contacts as it has been well-received and is very popular with delegates.

In the late autumn, we started developing a companion eLearning module for General Practitioners and Allied Healthcare professionals. This will take several months to complete and we hope to launch it in the autumn of 2022.

Genetic testing and screening

Early in 2021, we were invited by the UK National Screening Committee to respond to their consultation on genetic screening for adults with GH. Our response is a treasure trove of information about GH and this can be downloaded from our website here: https://www.haemochromatosis.org.uk/time-for-change-towardsgenetic-screening.

We firmly believe that genetic screening is a useful and valuable approach to improving the timeliness of diagnosis. Unfortunately, the UK National Screening Committee currently disagree, and their resulting report published in June 2021 confirmed the status quo (no screening). We will continue to press for changes in approach, both directly and with the support of the All-Party Parliamentary Group on GH.

Undeterred, in June we launched a genetic testing service for members and their families. Many members told us of the profound difficulty they faced in arranging testing for loved ones following a confirmed diagnosis. Almost 70% of members who used the new service reported that their GP had previously refused to provide a test for family members.

Our genetic testing service has exceeded all expectations. We thought initially we’d do 10 to 15 tests per month. We now test hundreds of people every month. Due to demand for the service, we expanded it from July to include non-members and their families. Feedback from people using our service has been encouraging – it scored 9.6 out of 10 overall during 2021, with 95% of people confirming that the results letters are clear and understandable. Everyone going through testing is invited to a 45 minute video appointment with Diogo, our Advanced Nurse Practitioner, to help to answer any questions and to allay any concerns about diagnosis.

This new genetic testing capability has led to other exciting initiatives. These include our cross-community genetic screening programme in Derry-Londonderry (see https://www.haemochromatosis.org.uk/News/cross-community-geneticscreening-launches-in-derry-londonderry). Thanks to the support of the Sylvia Adams Charitable Trust, the National Lottery Community Fund and the Esme Mitchell Trust, we screened several hundred people during 2021. Presently, one in 10 have the

genotype which predisposes genetic haemochromatosis. Of these, the majority are now receiving treatment and on-going monitoring. These figures are important, not just to the families affected but also from a policy perspective. Thus far, earlier studies into the prevalence of GH in the UK have been based largely on the UK Biobank. This dataset doesn’t have any representation from Northern Ireland – something of an omission. With our screening programme, we’re able to fill in the gaps and provide reliable data that is being used to inform service delivery and changes within the Northern Ireland Blood Transfusion Service and the Health and Social Care Board services too.

We aim to run more screening projects like this around the country as funding is secured.

Information resources

One of our core aims is to provide information and advice to people affected by genetic haemochromatosis. This includes families, friends, colleagues and employers of people with the condition.

During 2021, we continued the development of a broad range of new information resources, of interest to and in support of people affected by genetic haemochromatosis. This included new resources for children and young people plus specialist resources on GH and cardiomyopathy, skin conditions and mental health. With the support of the Moondance Foundation, many of our core resources have been translated and published in Welsh, including public awareness posters and guides to GH. Thanks to the NI Pharmacies Limited Trust Fund and the Esme Mitchell Trust, we’ve also developed and published a new suite of resources for community pharmacists and have published new public awareness posters for public libraries.

We remain committed to delivering high quality information and advice, so all our new resources have been reviewed for accuracy and completeness by our Clinical Advisory Panel.

Our support groups and helplines

Our Iron Brew peer support socials continued to be popular with several held via Zoom during the year. These are a great opportunity for people to meet others with the condition – often this is the first time someone newly diagnosed gets to meet fellow GHers, and so these can be a real encouragement to people affected by the condition.

Our Facebook Support Group continues to grow – we now support over 9,000 members across our Facebook Support Groups – plus a further 6,000 people across other social media channels.

During 2021, the helpline assisted almost 900 families by phone and email. This shows a continuing growth on earlier years. More and more, we see people using email as their helpline channel of choice.

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HAEMOCHROMATOSIS UK TRUSTEES’ ANNUAL REPORT & ACCOUNTS

Media and public awareness

In February, we were very fortunate to be selected by the BBC for a Radio 4 Charity Appeal, hosted by Stephen McGann of Call the Midwife fame. The broadcast reached over 2.5 million people over the week it ran, raising over £15,000 for charity funds. We’re tremendously grateful to Stephen for his support. The broadcast can be found online here: https://www.haemochromatosis.org.uk/Appeal/bbc-radio-4

We collaborated with NHS Blood and Transplant in June to run a joint media campaign on the benefits of blood donation for people with GH. This followed our successful project in 2020 to open up donation sessions more widely to people with GH. Over the week of the campaign, we reached over 1 million people on social media. We continue to work closely with NHS Blood and Transplant and have collaborated with the Scottish National Blood Transfusion Service and the Northern Ireland Blood Transfusion Service throughout the year to deliver similar schemes in those areas too.

We attracted a lot of media coverage during the year, including from BBC Radio and several front pages including the Irish News (twice), Belfast Telegraph, Ely Standard and elsewhere. We continue to look for opportunities to share the news about GH and its symptoms with the public – and hope to expand this work in 2022 and beyond.

Medical research

During 2021, we worked behind the scenes on a new medical research report. This revealed the true costs to the NHS of the burden of ill-health arising from genetic haemochromatosis, including key conditions such as liver disease, cancer, diabetes and joint pain arising from the condition. The initiative represented the culmination of a year’s work by researchers at York Health Economics Consultancy, our clinical advisors, and the University of Exeter Medical School. Our accompanying report discusses policy measures that will not only save lives, but also save money. The reports are available in hard copy from our office, in public libraries and also online here: https://www.haemochromatosis.org.uk/cost-of-illness

We’re grateful to the Shears Foundation and the Thackray Medical Research Trust for their generous support of this initiative.

Elsewhere, we completed research into the frequency and types of treatment for people with GH. Not everyone receives venesection – and for those that do, how often? This research proved vital in informing the cost of illness study and was made possible through members’ purchases from our online shop. The proceeds from every shop purchase help to fund work like this into the condition.

Advocacy to elected representatives

Our All-Party Parliamentary Group on GH continued to meet virtually throughout the year. Uniquely, our APPG is truly “all party” and includes members from all the parties, including those who do not normally accept their seats at Westminster.

Our Time for Change report, calling for adult screening, was given detailed consideration by APPG members. We continue to press for the timely diagnosis of people at risk of GH – and best practice in clinical pathways.

Other collaborations

In 2021, we continued our successful collaborations with the Samaritans and CRUSE Bereavement Care on helpline training initiatives. These were expanded to include work on mental health in association with Mind and a series of training events with the Genetic Alliance UK.

Finally, a big thank you to our donors, volunteers and team

Our charity receives no NHS funding or government financial support. And so, I am continually humbled by the dedication and faithfulness of our community, especially our fundraisers and community donors. Our especial thanks go to all our corporate, trust and foundation donors whose continuing financial support enables us to do so much of our work.

As a small charity, we rely on the dedication and selflessness of many volunteers who help us to help others. A special mention goes to all our helpline volunteers and members of the clinical community who help to review our publications ensuring they are accurate, up-to-date and useful to people affected by genetic haemochromatosis, whatever their personal situation.

I would also like to pay tribute to the charity’s small team of four (full-time equivalent) staff who work so diligently and passionately behind the scenes. Their efforts often go unnoticed, so we were thrilled to receive a prestigious GSK/King’s Fund Impact Award for our work in 2021. The award judges noted this quiet, determined focus on our charity’s mission and members that lies behind so many of our successes:

“We were inspired by the way HUK places people with the condition at the centre of everything it does, and how it works to target the communities most affected by haemochromatosis..”

Katie Pinnock, Director of UK Charitable Partnerships, GSK

Finally, thank you to our all members and the wider community for all your support during 2021 – we look forward to 2022 and beyond!

Take care, stay safe.

Neil McClements Chief Executive Officer June 2022

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HAEMOCHROMATOSIS UK TRUSTEES’ ANNUAL REPORT & ACCOUNTS

4. TRUSTEES’ REPORT FOR 2021

The trustees, who are directors for the purposes of company law, present the annual report together with the financial statements of the charitable company for the year ended 31 December 2021.

The trustees:

Katy Burns MBE Rodger Houghton Catherine Wiggins from 1st October 2021 Kevin King from 1st October 2021 Tim Spring until 19th January 2022 Kim Hicks until 16th May 2022

Background

Genetic haemochromatosis (GH) is a condition that leads to a build-up of iron in the body to toxic levels. In turn, this causes a wide range of symptoms and follow on conditions, some of which can be very serious or indeed, in the worst cases, fatal.

Haemochromatosis UK (HUK) is a patient led membership-based charity and patient organisation. HUK has over 2,300 paid-up members (an increase of 50% over the past two years) and over 1,600 clinician associates (a three-fold increase since 2019). The charity links thousands of people affected by GH through events, social media and other activities.

HUK has four key objectives:

1 to provide information and support to patients and their families

2 to educate healthcare professionals, patients and others about GH and its impact 3 to raise public awareness of GH and of the importance of early intervention 4 to stimulate and influence research into the science, impact and statistics of GH

In this report, we report progress with these objectives during 2021 and outline plans and aspirations for the coming year.

The trustees follow the Charity Commission’s guidance on public benefit when planning and reviewing spending, activities and budgets. Many of the trustees have GH themselves which ensures that we do not lose sight of our priorities. We also recognise that having GH is not a prerequisite to join the Board. We seek to draw upon a wide range of talents and skills, both within and beyond the GH community, to ensure that the Board is effective and focused in supporting the charity’s continuing development.

It’s important to note that the charity’s financial position remains sound despite the significant and continuing challenges to community fundraising brought by the Covid pandemic. We continue to focus on stewarding the charity’s financial resources to ensure the long-term sustainability of the organisation whilst delivering much needed, effective services to the GH community. Our Annual Financial Statements set out the financial position in more detail on the following pages.

Trust grants

This year, we have enjoyed further increased support from charitable trusts, totalling £90,499. The trustees would like to extend their grateful thanks and public acknowledgment to our supporters:

Corporate donations

We were unable to run our popular Iron Games events in 2021 due to the Covid pandemic. This had a significant impact on corporate donations. However, we gratefully acknowledge the following donors for their support during this difficult year:

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HAEMOCHROMATOSIS UK TRUSTEES’ ANNUAL REPORT & ACCOUNTS

An important thank you message

The trustees extend their grateful thanks to all the volunteers, members, donors, fundraisers, activists, advisers and other supporters who have made a contribution over the year. There are so many individuals who have helped to develop the life of our charity – too many to mention by name. It is difficult to convey the importance of what you do for us and for people affected by genetic haemochromatosis in a few words; we thank you all sincerely.

Statement of Fundraising Regulator and Fundraising Preference Service Compliance Donors to our charity can be assured that we comply with the regulatory standards for fundraising. We are registered with the Fundraising Regulator and are committed to the Fundraising Promise and adherence to the Code of Fundraising Practice. This report covers the requirements charities must follow as set out in the Charities Act 2016.

In 2021, we spent just over £326,000 to provide our charitable services. Of our income of £366,138, donations (including in memoriam, community fundraising and ad hoc donations) totalling £99,160 accounted for 27% of income. Almost 25% (£90,499) of our income came from grant awarding bodies and foundations (e.g., the Sylvia Adams Charitable Trust, the National Lottery). Membership subscriptions contributed £62,545, 17% of income. A further 16% worth £57,675 came from consultancy services delivered to the National Consortium of Intelligent Medical Imaging. Our new genetic testing service (launched May 2021) delivered £29,527 of income representing just over 8% of total income. The balance of our income worth 7% of total income came from HMRC Gift Aid reclaims (£19,285), income from our online shop/events (£7,207) and bank interest (£240).

We aim to respond to all complaints relating to our fundraising activities within 28 days. Complaints are dealt with in line with our Fundraising Complaints Policy. Any serious complaints are dealt with by our CEO and trustees so that they can consider lessons learnt. The trustees also consider an annual report about complaints from the CEO.

Our website provides our contact details for the public in the event that an individual wishes to make a complaint. In 2021, we had no fundraising complaints and so there were no complaints to report to the Fundraising Regulator.

We are also signed up to the Fundraising Preference Service (FPS) to enable individuals to opt out from receiving fundraising communications from us. In 2021, we received no requests from the FPS for action.

We publish our external policies publicly on our website here: https://www. haemochromatosis.org.uk/our-policies. These include our Safeguarding Policy. In addition to this policy, we have an agreed operating procedure to protect vulnerable people. Our fundraisers (both staff and partners) are familiarised with the code of conduct to ensure that it is applied properly and everyone fundraising for the charity undertakes mandatory safeguarding training and assessment.

Our fundraising efforts involve encouraging community fundraising events, donations and gifts in wills, supporting challenge events and engaging with grant awarding bodies on specific projects. Our grants and trusts fundraising team work in-house to help us to deliver fundraising initiatives. We aim to ensure those fundraisers we engage observe the highest standards in terms of fundraising practice, including compliance with the Code of Fundraising Practice and the charity’s own policies.

We occasionally use third-party partners to help us to raise funds (for example the Big Give), particularly where we do not have the expertise in-house. We have safeguards in place when working with partners so that we protect our supporters and the reputation of our charity. All donations are accepted and processed in line with the charity’s published Donations Policy.

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HAEMOCHROMATOSIS UK TRUSTEES’ ANNUAL REPORT & ACCOUNTS

5. GOVERNANCE

The Chief Executive

The trustees delegate responsibility for day-to-day operations to the Chief Executive, in accordance with a formally documented Scheme of Delegation.

Trustees are responsible in law for the financial and strategic management of the charity.

Trustees are expected to attend all Board meetings and the charity’s AGM, contribute meaningfully to decision making and to act in accordance with good practice guidance issued by the Charity Commission and Companies House.

In 2021, the charity enhanced its governance with the introduction of Board Observers. These people bring specific skills to the Board in an advisory capacity and are “trustees-in-training”. After a suitable period of time, Board Observers may consider, but are not obliged to undertake, a progression to full trusteeship.

Board Observers attend all Board meetings but do not have voting rights and are not directors of the charity’s company limited by guarantee. However, they are encouraged to participate fully in the life of the charity and the Board’s activities.

During 2021, two Board Observers progressed to full trusteeship. An additional Board Observer was recruited for their CQC/clinical services experience.

When a trustee or Board Observer vacancy arises, it is advertised widely in accordance with Charity Commission best practice guidance. This includes on our own website, eBulletin and social media channels, plus external recruitment forums including ICAEW Volunteers, CharityJobs, Reach Volunteering, Law Society Volunteering, LinkedIn, Women On Boards, the Young Trustees Movement and elsewhere. Each new trustee/Board Observer is provided with an induction training pack which includes a guide to the legal and practical responsibilities of being a trustee/Board Observer. Formal training with the NCVO in the role and the legal responsibilities of a trustee are also provided. All Board members must undertake safeguarding training annually.

The Chief Executive is supported by a small part-time staff team comprised of a Social Media Community and Volunteering Manager, an Advanced Nurse Practitioner, a Fundraiser and a Charity Administrator. The team represents just four full-time equivalent post-holders.

Risk management

Haemochromatosis UK recognises the importance of understanding and managing risk. As such, the Board of trustees conducts a review of the major risks to which the charity is exposed at each Board meeting. As part of this process, a risk register has been established and is updated at least quarterly in order to identify and evaluate the risks faced and to formulate a response.

Where appropriate, systems or procedures have been established to mitigate the risks the charity faces. Policies and procedures are periodically reviewed to ensure that they continue to meet the needs of the charity. Responsibility for risk assessment and day-to-day risk management is defined in the charity’s Scheme of Delegation.

Significant external risks to funding have led to the development of a strategic plan which will allow for the diversification of funding and activities. Internal control risks are minimised by the implementation of procedures for the authorisation of all financial transactions. Risks to operations due to Covid-19 are monitored and implemented in accordance with prevailing UK government guidance.

Procedures and training are in place to ensure compliance with safeguarding best practices and the health and safety of staff, volunteers and beneficiaries.

Strategic planning

The Board continues to reflect upon the interim strategic plan drafted in early 2020, with a continued focus on the delivery of our core objectives. This will be further refined by the Board during 2022.

Our record with the Charity Commission can be found at www.charitycommission. gov.uk by searching on this site using Charity number1001307.

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HAEMOCHROMATOSIS UK TRUSTEES’ ANNUAL REPORT & ACCOUNTS

6. FINANCE

HUK began the year with £67,159 restricted funds, with a further £90,499 received throughout 2021.

Funding provided throughout the year was largely towards budgeted work, with almost all the brought forward restricted funds deployed. Funds received in the year were either deployed in 2021 and Q1 2022 or are expected to be utilised across the coming year, 2022. HUK made great use of donor funds throughout 2021, finishing the year with a restricted funds balance of £44,921.

Overview

Whilst 2021 was certainly not a year without challenge, the financial position of the charity remains strong. The dynamic environment has meant we have had to adapt to new operating conditions and we have used innovative strategies to raise funds, increase awareness and support the beneficiaries of the charity.

We are confident of our ability to raise funds and deploy resources in the best way possible and, as such, are pleased to have created a new fundraising role within the team to maximise upon the opportunity in this area.

It is critical moving forwards that the charity continues to employ resources in the best interests of the people affected by GH. We will therefore have a focus on utilising our healthy cash reserves to support the launch and on-going operations of the exciting initiatives we have in place, including our genetic testing, support groups and helpline and a range of other ideas in the early stages of development.

Overall, HUK delivered a £40,118 net income, increasing reserves to £396,825.

Income

The income for 2021 was £366,138, this was a 15% increase vs. 2020. The income of the charity largely comes from four key areas:

It is worth noting the significant increase in our membership subscriptions over the course of the year, with income totalling £62,545, an improvement of 38% vs 2020.

Restricted and unrestricted funds

A large proportion of HUK’s income is without restriction, for the charity to use how it deems best in order to meet the four key objectives previously detailed. These are termed unrestricted funds.

Designated funds form part of the unrestricted funds but have been designated by the trustees for a particular purpose. Restricted funds are funds received where the donor has specified a particular purpose. These funds can only be used for that purpose.

Of the £351,904 unrestricted balance, £113,896 has been designated for use in education and awareness.

Expenditure

Total expenditure for 2021 was £326,020, an increase of 42% over the previous year. This reflects a planned and deliberate attempt to deploy the reserves of the charity toward charitable benefit. Without the restriction of face-to-face meetings and events due to Covid-19, this expenditure would have been higher.

The increased expenditure also reflects the deployment of the charity’s reserves in two new key areas. Firstly, medical research, which was supported to the amount of £26,755, is the first major research the charity has funded in recent years. Secondly, the genetic testing service that the charity promoted this year cost £30,875. It should be emphasised that the cost of the latter was substantially offset by the payments made by members and non-members, whereby non-members payments heavily subsidised members, which together raised £29,527. Therefore, this new initiative was virtually self-funding.

Policy on reserves

In developing the charity’s reserves policy, the trustees are mindful of the need to provide a level of working capital that protects the continuity of the charity’s work whilst providing a level of funding that enables the organisation to capitalise on unexpected opportunities.

Our policy provides cover for risks such as unforeseen expenditure or unanticipated loss of income. These risks can arise not only from events such as the Covid-19 pandemic, but from other world events such as the Ukraine crisis, where trusts and foundations can reprioritise how they wish to deploy their resources. We also face the cost-of-living crisis now being felt by so many in the UK which may lead to households reassessing their support for charities such as ours.

The trustees are mindful of the on-going and growing needs of the genetic hemochromatosis community and the need to ensure the financial sustainability of the organisation for the long term. This must be balanced with the need of the charity to deploy its reserves for charitable purposes.

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HAEMOCHROMATOSIS UK TRUSTEES’ ANNUAL REPORT & ACCOUNTS

To that end, the trustees of the charity resolve to pursue a policy of establishing and maintaining a contingency reserve fund to meet between six to nine months’ unrestricted expenditure.

HAEMOCHROMATOSIS UK OBJECTIVES, STRATEGIES AND ACTIVITIES

Conclusion

This year has seen the largest amount raised in the charity’s 32 year history which has been down to the efforts of the charity’s CEO and the dedicated team supporting him. Whilst significant resources have been deployed in 2021 as planned, the charity finishes the year in a strong financial position.

The charity is looking forward to finding further innovative ways to support its charitable objectives in 2022 and beyond.

Objects and aims

Rodger Houghton ACA & Catherine Wiggins CGMA Finance Trustees June 2022

Objectives, strategies and activities

HUK undertakes four key activities :

Public benefit

The charity’s trustees have given due consideration to the Charity Commission for England & Wales’ published guidance on the public benefit requirement under the Charities Act 2011. Our programme of activities also conforms to the charity’s charitable objectives and aims.

We work to support anyone affected by genetic haemochromatosis, irrespective of age, gender, ethnicity or race, religion, sexual orientation or genetic status. In particular, our information, advice and helpline services are available to the general public free of charge. Our annual review illustrates several initiatives to advance patient safety through improved clinician education and our wider influencing work, in the public interest, to raise awareness of the needs of the genetic haemochromatosis community through engagement with elected representatives, policymakers and the public at large.

As such, the work carried out by Haemochromatosis UK is consistent with charitable purposes as identified in the Charities Act 2011 (the advancement of health or saving of lives).

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HAEMOCHROMATOSIS UK TRUSTEES’ ANNUAL REPORT & ACCOUNTS

The trustees confirm that they have complied with the requirements of section 17 of the Charities Act 2011 to have due regard to the public benefit guidance published by the Charity Commission for England and Wales.

INDEPENDENT EXAMINER’S REPORT TO THE TRUSTEES OF HAEMOCHROMATOSIS UK

Statement of trustees’ responsibilities

The trustees (who are also the directors of Haemochromatosis UK for the purposes of company law) are responsible for preparing the trustees’ report and the financial statements in accordance with the United Kingdom Accounting Standards (United Kingdom Generally Accepted Accounting Practice) and applicable law and regulations.

Company law requires the trustees to prepare financial statements for each financial year. Under company law, the trustees must not approve the financial statements unless they are satisfied that they give a true and fair view of the state of affairs of the charitable company and of its incoming resources and application of resources, including its income and expenditure, for that period. In preparing these financial statements, the trustees are required to:

The trustees are responsible for keeping adequate accounting records that are sufficient to show and explain the charitable company’s transactions and 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.

Small companies provision statement

This report has been prepared in accordance with the small companies regime under the Companies Act 2006.

Approved by the Board on 7th June 2022.

Katy Burns MBE Rodger Houghton ACA & Catherine Wiggins CGMA Chair Finance Trustees June 2022 June 2022

I report to the charity trustees on my examination of the accounts of the Company for the year ended 31 December 2021.

Respective responsibilities of trustees and examiner

As the trustees of the Charitable Company (and also its directors for the purposes of company law) you are responsible for the preparation of the accounts in accordance with the requirements of the Charities and Trustee Investment (Scotland) Act 2005 (‘the 2005 Act’), the Charities Accounts (Scotland) Regulations 2006 (as amended) and the Companies Act 2006 (‘the 2006 Act’). You are satisfied that the accounts of the Company are not required by charity or company law to be audited and have chosen instead to have an independent examination.

Having satisfied myself that the accounts of the Company are not required to be audited under Part 16 of the 2006 Act and are eligible for independent examination, I report in respect of my examination of the Company’s accounts carried out under section 44 (1) (c) of the 2005 Act and section 145 of the Charities Act 2011 (‘the 2011 Act’). In carrying out my examination I have followed the requirements of Regulation 11 of the Charities Accounts (Scotland) Regulations 2006 (as amended) and the Directions given by the Charity Commission under section 145(5)(b) of the 2011 Act.

Independent examiner’s statement

Since Haemochromatosis UK is required by company law to prepare its accounts on an accruals basis and is registered as a charity in Scotland your examiner must be a member of a body listed in Regulation 11(2) of the Charities Accounts (Scotland) Regulations 2006 (as amended). I can confirm that I am qualified to undertake the examination because I am a registered member and Fellow of the Association of Charity Independent Examiners, which is one of the listed bodies.

I have completed my examination. I confirm that no matters have come to my attention in connection with the examination giving me cause to believe that in any material respect:

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HAEMOCHROMATOSIS UK TRUSTEES’ ANNUAL REPORT & ACCOUNTS

3 the accounts do not comply with the accounting requirements of section 396 of the 2006 Act other than any requirement that the accounts give a ‘true and fair’ view which is not a matter considered as part of an independent examination; or 4 the accounts have not been prepared in accordance with the methods and principles of the Statement of Recommended Practice for accounting and reporting by charities [applicable to charities preparing their accounts in accordance with the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS 102)].

I have no concerns and have come across no other matters in connection with the examination to which attention should be drawn in this report in order to enable a proper understanding of the accounts to be reached.

John O’Brien MSc, FCCA, FCIE, employee of Community Accounting Plus Fellow of the Association of Charity Independent Examiners Units 1 & 2 North West 41 Talbot Street Nottingham NG1 5GL

Date: 17 June 2022

7. ACCOUNTS

Haemochromatosis UK

Statement of Financial Activities for the Year Ended 31 December 2021 (Including Income and Expenditure Account and Statement of Total Recognised Gains and Losses)

Note Unrestricted
funds £
Restricted
funds £
Total
2021 £
Total
2020 £
Income and endowments from:
Donations and legacies
4
Charitable activities
5
Investment income
3		 118,445
-
118,445
83,804
156,954
90,499
247,453
233,296
240
-
240
567
Total income 275,639
90,499
366,138
317,667
Expenditure on:
Charitable activities
7		 (153,857)
(172,163)
(326,020) (229,432)
Total expenditure (153,857)
(172,163)
(326,020) (229,432)
Net income
Transfers between funds
Net movement of funds
Reconciliation of funds:
Total funds brought forward
Total funds carried forward
14		 121,782
(81,664)
40,118
88,235
(59,426)
59,426
-
-
62,356
(22,238)
40,118
88,235
289,548
67,159
356,707
268,472
351,904
44,921
396,825
356,707

All of the charity’s activities derive from continuing operations during the above two periods.

The funds breakdown for 2021 is shown in note 14.

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HAEMOCHROMATOSIS UK TRUSTEES’ ANNUAL REPORT & ACCOUNTS

Haemochromatosis UK

(Registration number: 02541361) Balance Sheet as at 31 December 2021

Haemochromatosis UK

Notes to the Financial Statements for the Year Ended 31 December 2021

1 Charity status

----- Start of picture text -----
Notes 2021 £ 2020 £
Current assets
Debtors 12 28,767 9,161
Cash at bank and in hand 379,871 352,258
408,638 361,419
Creditors: amounts falling due within one year 13 (11,813) (4,712)
Net assets 396,825 356,707
Funds of the charity:
Restricted income funds
Restricted funds 44,921 67,159
Unestricted income funds
Unestricted funds 351,904 289,548
Total charity funds 14 396,825 356,707
----- End of picture text -----

For the financial year ending 31 December 2021 the charity was entitled to exemption from audit under section 477 of the Companies Act 2006 relating to small companies.

Directors’ responsibilities:

These accounts have been prepared in accordance with the provisions applicable to companies subject to the small companies regime.

The financial statements on pages 23 to 37 were approved by the trustees and authorised for issue on 7th June 2022 and signed on their behalf by:

The charity is limited by guarantee, incorporated in England & Wales and Scotland, and consequently does not have share capital. Each of the trustees is liable to contribute an amount not exceeding £1 towards the assets of the charity in the event of liquidation.

2 Accounting policies

Summary of significant accounting policies and key accounting estimates The principal accounting policies applied in the preparation of these financial statements are set out below. These policies have been consistently applied to all the years presented, unless otherwise stated.

Statement of compliance

The financial statements have been prepared in accordance with Accounting and Reporting by Charities: Statement of Recommended Practice applicable to charities preparing their accounts in accordance with the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS 102) (effective 1 January 2015) - (Charities SORP (FRS 102)), the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS 102). They also comply with the Companies Act 2006 and Charities Act 2011.

Basis of preparation

Haemochromatosis UK meets the definition of a public benefit entity under FRS 102. Assets and liabilities are initially recognised at historical cost or transaction value unless otherwise stated in the relevant accounting policy notes.

Going concern

The financial statements have been prepared on a going concern basis. The trustees assess whether the use of going concern is appropriate, i.e., whether there are any material uncertainties related to events or conditions that may cast significant doubt on the ability of the charity to continue as a going concern. The trustees make this assessment in respect of a period of one year from the date of approval of the financial statements.

Exemption from preparing a cash flow statement

Rodger Houghton Trustee

Catherine Wiggins Trustee

The charity opted to early adopt Bulletin 1 published on 2 February 2016 and has therefore not included a cash flow statement in these financial statements.

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HAEMOCHROMATOSIS UK TRUSTEES’ ANNUAL REPORT & ACCOUNTS

Income and endowments

Voluntary income including donations, gifts, legacies and grants that provide core funding or are of a general nature is recognised when the charity has entitlement to the income, it is probable that the income will be received and the amount can be measured with sufficient reliability.

Donations and legacies

Donations are recognised when the charity has been notified in writing of both the amount and settlement date. In the event that a donation is subject to conditions that require a level of performance by the charity before the charity is entitled to the funds, the income is deferred and not recognised until either those conditions are fully met, or the fulfilment of those conditions is wholly within the control of the charity and it is probable that these conditions will be fulfilled in the reporting period.

Grants receivable

Grants are recognised when the charity has an entitlement to the funds and any conditions linked to the grants have been met. Where performance conditions are attached to the grant and are yet to be met, the income is recognised as a liability and included on the balance sheet as deferred income to be released.

Other trading income

Other trading income has been raised from genetic testing services.

Expenditure

All expenditure is recognised once there is a legal or constructive obligation to that expenditure, it is probable settlement is required and the amount can be measured reliably. All costs are allocated to the applicable expenditure heading that aggregates similar costs to that category. Where costs cannot be directly attributed to particular headings, they have been allocated on a basis consistent with the use of resources, with central staff costs allocated on the basis of time spent and depreciation charges allocated on the portion of the asset’s use. Other support costs are allocated based on the spread of staff costs.

Charitable activities

Charitable expenditure comprises those costs incurred by the charity in the delivery of its activities and services for its beneficiaries. It includes both costs that can be allocated directly to such activities and those costs of an indirect nature necessary to support them.

Governance costs

These include the costs attributable to the charity’s compliance with constitutional and statutory requirements, including audit, strategic management and trustees’ meetings and reimbursed expenses.

Government grants

Government grants are recognised based on the accrual model and are measured at the fair value of the asset received or receivable. Grants are classified as relating either to revenue or to assets. Grants relating to revenue are recognised in income over the period in which the related costs are recognised. Grants relating to assets are recognised over the expected useful life of the asset. Where part of a grant relating to an asset is deferred, it is recognised as deferred income.

Taxation

The charity is considered to pass the tests set out in Paragraph 1 Schedule 6 of the Finance Act 2010 and therefore it meets the definition of a charitable company for UK corporation tax purposes. Accordingly, the charity is potentially exempt from taxation in respect of income or capital gains received within the categories covered by Chapter 3 Part 11 of the Corporation Tax Act 2010 or Section 256 of the Taxation of Chargeable Gains Act 1992, to the extent that such income or gains are applied exclusively to charitable purposes.

Trade debtors

Trade debtors are amounts due from customers for merchandise sold or services performed in the ordinary course of business. Trade debtors are recognised initially at the transaction price. They are subsequently measured at amortised cost using the effective interest method, less provision for impairment. A provision for the impairment of trade debtors is established when there is objective evidence that the charity will not be able to collect all amounts due according to the original terms of the receivables.

Cash and cash equivalents

Cash and cash equivalents comprise cash on hand and call deposits, and other short-term highly liquid investments that are readily convertible to a known amount of cash and are subject to an insignificant risk of change in value.

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HAEMOCHROMATOSIS UK TRUSTEES’ ANNUAL REPORT & ACCOUNTS

HAEMOCHROMATOSIS UK TRUSTEES’ ANNUAL REPORT & ACCOUNTS

Trade creditors

Trade creditors are obligations to pay for goods or services that have been acquired in the ordinary course of business from suppliers. Accounts payable are classified as current liabilities if the charity does not have an unconditional right, at the end of the reporting period, to defer settlement of the creditor for at least 12 months after the reporting date. If there is an unconditional right to defer settlement for at least 12 months after the reporting date, they are presented as non-current liabilities. Trade creditors are recognised initially at the transaction price and subsequently measured at amortised cost using the effective interest method.

Fund structure

Unrestricted income funds are general funds that are available for use at the trustees’ discretion in furtherance of the objectives of the charity.

Designated funds are unrestricted funds set aside for specific purposes at the discretion of the trustees.

Restricted income funds are those donated for use in a particular area or for specific purposes, the use of which is restricted to that area or purpose.

Pensions and other post retirement obligations

The charity operates a defined contribution pension scheme for employees. The assets of the scheme are held separately from those of the charity. Pension cost charges in the Statement of Financial Activities represent the contributions payable by the charity during the year.

3 Investment income

4 Income from donations and legacies

----- Start of picture text -----
||||| |---|---|---|---| |Unrestricted| |funds| |Total|Total| |General £|2021 £|2020 £| |Donations and legacies:| |Gift aid received|8,806|8,806| |Grants, including capital grants:| |Government grants|-|-|7,425| |Grants from other charities/foundations|109,639|109,639|76,379| |118,445|118,445|83,804|

----- End of picture text -----

5 Income from charitable activities

----- Start of picture text -----
|||||| |---|---|---|---|---| |Unrestricted| |funds| |Restricted|Total|Total| |Genera £l|funds £|2021 £|2020 £| |Grants and donations|-|90,499|90,499|108,873| |Consultancy fees|57,675|-|57,675|72,527| |Event ticket sales|262|-|262|772| |Membership subscriptions|62,545|-|62,545|45,230| |Merchandise|6,945|-|6,945|5,206| |Sundry income|-|-|-|688| |Genetic testing|29,527|-|29,527|-| |156,954|90,499|247,453|233,296|

----- End of picture text -----

----- Start of picture text -----
||||| |---|---|---|---| |Unrestricted| |funds| |Total|Total| |General £|2021 £|2020 £| |Interest receivable and similar income;| |Interest receivable on bank deposits|240|240|567|

----- End of picture text -----

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HAEMOCHROMATOSIS UK TRUSTEES’ ANNUAL REPORT & ACCOUNTS

6 Grants and donations

7 Expenditure on charitable activities

Lillie C Johnson Trust
PG Jenkins Legacy
Baron Davenport
Harry Cureton Fund
Doris Field Charitable Trust
Anson Charitable Trust
Chapman Trust
Oakdale Trust for Welsh community Ambassador
Stafford Trust (Scottish Ambassadors)
D'Oyly Carte Trust
WD Charitable Trust
Anonymous Charitable Foundation
Arnold Clark Community Fund
Hemby Trust
WG Edwards
Leech Fourteenth Trust
Northern Pharmacies Ltd Trust Fund
Thackery Medical Research
Esme Mitchell Fund
Ulster Bank Community Staff Fund
Aston Foundation
Sylvia Adams
Evan Cornish
Souter Trust
E Dinshaw Grant
National Lottery Scotland
Girls Welfare
Torus Foundation
National Lottery Wales
Moondance
Waddilove
Annie Tranmer
Community NI - Gills Charity Fund
NI Pressure Group
F B Coales No 4 Family Trust
Gift Aid
Sundry grants and donations		 Unrestricted
funds
Restricted
funds
Total
2021 £
2021 £
2021 £
-
500
500
-
5,000
5,000
-
460
460
-
3,495
3,495
-
500
500
-
500
500
-
1,000
1,000
-
1,000
1,000
-
2,000
2,000
-
2,500
2,500
-
500
500
-
750
750
-
1,000
1,000
-
750
750
-
1,800
1,800
-
1,000
1,000
-
7,636
7,636
-
3,500
3,500
-
1,500
1,500
-
500
500
-
1,000
1,000
-
14,863
14,863
-
2,360
2,360
-
5,000
5,000
-
350
350
-
10,000
10,000
-
500
500
-
500
500
-
9,740
9,740
-
3,295
3,295
-
1,000
1,000
-
500
500
-
2,000
2,000
-
1,000
1,000
-
2,500
2,500
19,285
-
19,285
99,160
-
99,160
118,445
90,499
208,944
Accountancy
Advertising and promotional
Bank charges
Equipment and computer costs
External events
Dues and subscriptions
Genetic testing
Hosted events
Insurance
IT repairs and servicing
Legal and professional
Medical research
Materials stock
Offce and general admin
Phone costs
Premises costs
Printing, postage and
stationery
Publications
Raising funds
Recruitment
Rent
Software
Staff benefts
Sundry costs
Training
Travel and accommodation
Trustees expenses
Wages, NI and pension
Bad debts written off		 Unrestricted
General
funds
Unrestricted
Designated
funds
Restricted
funds
Total
Total
2021 £
2021 £
2021£
2021 £
2020 £
7,346
-
-
7,346
7,944
294
-
2,250
2,544
2,241
178
-
-
178
2,362

832
-
1,032
1,864
5,446
(24)
-
6,316
6,292
4,796
1,658
-
221
1,879
1,324
15,875
15,000
30,875
2,571
-
3,408
5,979
2,220
1,380
-
-
1,380
1,048
-
-
741
741
1,722
9,357
-
9,357
10,880
-
26,755
26,755
-
4,491
-
-
4,491
7,653
309
-
104
413
308
1,304
-
744
2,048
2,330
600
-
-
600
17
10,575
-
12,159
22,734
10,861
3,558
-
19,077
22,635
5,218
591
-
-
591
108
95
-
-
95
53
6,440
-
5,000
11,440
9,300
11,888
-
1,093
12,981
5,671
-
-
-
-
1,399
347
-
-
347
697
2,300
-
3,428
5,728
1,955
2,289
-
2,983
5,272
2,518
-
-
-
-
1,997
41,220
28,383
71,852
141,455
137,704
-
-
-
-
1,660
125,474
28,383
172,163
326,020
229,432

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8 Trustees’ remuneration and expenses

No trustees, nor any persons connected with them, have received any remuneration from the charity during the year. No trustees have received any other benefits from the charity during the year.

Corrina Towers £nil (2020 - £400) of travel expenses were reimbursed to Corrina Towers during the year.

Katharine Hough £nil (2020 - £45) of travel expenses were reimbursed to Katharine Hough during the year.

Lisa Flude £nil (2020 - £844) of travel expenses were reimbursed to Lisa Flude during the year.

Roger Keyte £nil (2020 - £392) of travel expenses were reimbursed to Roger Keyte during the year.

Simon Flude £nil (2020 - £264) of travel expenses were reimbursed to Simon Flude during the year.

9 Fees payable to independent examiner

During the period, the fees payable to the charity’s independent examiner, Community Accounting Plus, are analysed as follows:

2021 £ 2020 £
Independent examination 1,080 1,080

10 Staff costs

The aggregate payroll costs were as follows:

The aggregate payroll costs were as follows:
Staff costs during the year were:
Wages and salaries
Social security costs
Pension costs
Compensation payments		 2021 £
2020 £
126,300
118,301
7,752
7,473
7,403
1,248
-
10,682
141,455
137,704

The monthly average number of persons (including the senior management team) employed by the charity during the year expressed as full time equivalents was as follows:

Average number of employees 2021
No
2020
No
4
3

3 (2020 - 3) of the above employees participated in the Defined Contribution Pension Schemes.

Contributions to the employee pension schemes for the year totalled £7,403 (2020 - £1,248).

During the year, the charity made redundancy and/or termination payments which totalled £Nil (2020 - £10,682).

No employee received emoluments of more than £60,000 during the year.

The total employee benefits of the key management personnel of the charity were £63,597 (2020 - £63,545).

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HAEMOCHROMATOSIS UK TRUSTEES’ ANNUAL REPORT & ACCOUNTS

11 Taxation

The charity is a registered charity and exempt from corporation taxation for activities associated with its charitable objectives.

12 Debtors

12 Debtors
Trade debtors
Trade debtors
Prepayments		 2021 £
2020 £
14,938
535
8,961
8,626
4,868
-
28,767
9,161

13 Creditors: amounts falling due within one year

13 Creditors: amounts falling due within one year
Trade creditors
Other taxation and social security
Other creditors
Accruals		 2021 £
2020 £
5,939
512
3,628
2,928
266
192
1,980
1,080
11,813
4,712

14 Funds

Unrestricted funds
General
General
Designated
Education & Awareness
Total Unrestricted funds
Restricted funds
Information & support
Education & awareness
GH education
Helpline
Northern Ireland Community
Fund
Scottish Wellbeing
Wales Initiative
Volunteer training
Kids Work
Fundraising general
Hospital packs
Breaking Down Barriers
Medical research
Total restricted funds
Total funds
Unrestricted funds
General
Restricted funds
Total funds		 Balance at
1 January
2021
Incoming
resources
Resources
expended
Transfers
Balance at
31 December
2021
£
£
£
£
£
147,269
275,639
(125,474)
(59,426)
238,008
142,279
-
(28,383)
113,896
142,279
-
(28,383)
-
113,896
289,548
275,639
(153,857)
(59,426)
351,904
4,876
9,345
(22,749)
10,875
2,347
-
5,960
(12,544)
7,584
1,000
37,000
(16,895)
(15,294)
4,811
10,478
5,000
(10,895)
4,583

12,250
11,136
(31,193)
8,307
500
2,355
12,000
(2,766)
11,589
-
14,376
(10,944)
5,368
8,801
-
4,160
(3,455)
705
-
1,000
(1,200)
200
-
-
5,050
(20,503)
15,453
-
-
500
(878)
378
-
21,972
(11,387)
10,585
200
-
(26,755)
26,555
-
67,159
90,499
(172,163)
59,426
44,921
356,707
366,138
(326,020)
-
396,825
211,249
208,794
(126,840)
(3,655)
289,548
57,223
108,873
(102,592)
3,655
67,159
268,472
317,667
(229,432)
-
356,707

During the year, the charity spent in excess of the restricted funds that were brought forward and therefore the expenditure identified in excess of this was brought back down to nil by an applicable transfer.

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HAEMOCHROMATOSIS UK TRUSTEES’ ANNUAL REPORT & ACCOUNTS

The specific purposes for which the funds are to be applied are as follows:

15 Analysis of net assets between funds

Current assets
Current liabilities
Total net assets
Current assets
Current liabilities
Total net assets		 Unrestricted
funds General £
Restricted
funds £
Total funds at
31 December
2021 £
363,717
44,921
408,638
(11,813)
-
(11,813)
351,904
44,921
396,825
Unrestricted
funds General £
Restricted
funds £
Total funds at
31 December
2020 £
294,260
67,159
361,419
(4,712)
-
(4,712)
289,548
67,159
356,707

16 Related party transactions

There were no related party transactions in the year.

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HAEMOCHROMATOSIS UK TRUSTEES’ ANNUAL REPORT & ACCOUNTS

Contact us

We work to support anyone affected by genetic haemochromatosis.

Join us – together we’re stronger Become a member – signup on our website.

Haemochromatosis UK Advice & Help Line Telephone (12-3pm weekdays): 03030 401 102 Email (24/7): helpline@huk.org.uk

Website: www.hae ~~moc~~ hromatosis.org.uk

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