SIR
SCLERODERMA
& RAYNAUD'S UK
Annual Report & Accounts 2021-22
## CONTENTS
## **Overview**
|Message from the Chair & Chief Executive|3|
|---|---|
|Our Vision, Purpose & Values|4|
|Our Strategic Aims|4|
|**Trustees’ Report**||
|**What we did in 2021-22**||
|• Awareness|5|
|• Empowerment|6|
|• Healthcare|7|
|• Research|9|
|Financial Review|12|
|Principal Risks & Uncertainties|14|
|Structure, Governance & Management|14|
|Statement of Trustees’ responsibilities|16|
|Independent Auditor’s Report|17|
|**Financial Statements**||
|Consolidated Statement of Financial Activities|20|
|Consolidated and Charity Balance Sheets|21|
|Consolidated Cash Flow Statement|22|
|Notes to the Consolidated Financial Statements|23|
|Legal and Administrative Information|37|
2
Overview
## **Message from the Chair & Chief Executive**
SRUK launched six years ago in April 2016. A lot has happened over that period, not least COVID-19, which has impacted on everyone but especially those in our community who are clinically vulnerable.
The pandemic has reinforced the power of community and how when we come together, we are so much stronger, but this isn’t new and is something that’s been in evidence within our community from the very beginning.
And it is this incredible support and commitment that has helped us grow over the last six years. We’ve seen our supporter base grow from 4,400 to over 10,000, which in turn has helped us double our income and work towards investing more in support services and research.
When we set up SRUK, you said that you wanted us to increase awareness, provide information & support, ensure equity of access to treatment & care and increase our investment in research.
Over the last six years we have strengthened our relationship with the media and increased coverage of Scleroderma and Raynaud’s, securing regular features in print, online and broadcast. In fact, we secured the first ever piece about Raynaud’s on BBC2’s Trust Me I’m a Doctor. As a result, we’ve seen a growth in traffic to the website, with a doubling in the number of web users and social media engagement.
As part of our support services programme, we produced 28 factsheets and publications with over 100,000 copies ordered or downloaded and our Helpline has taken over 9,000 calls. Over 85% of people report that our information and events help them to better understand and manage their condition. We’ve increased the number of support groups from 9 to 15 in England, Scotland and N. Ireland and aim to have 2 more in Wales.
We recognised early on that we would have more impact if we worked in collaboration, and the creation of the Rare Auto Immune Rheumatic Disease Alliance (RAIRDA) has helped raise the profile of these conditions and put us in a stronger position to influence change. We are now involved in the DHSC’s Rare Disease Forum, providing feedback on the implementation of the Rare Disease Framework, as well as being part of the NHSE #BestMSK Rheumatology transformation working group.
Over the last six years we’ve spent over £1.3 million on research, supporting on-going grants, 14 new grants and projects. We have developed innovative partnerships with key institutions and industry, working with biotech to identify drugs for potential re-purposing, created a Raynaud’s App to track people with secondary Raynaud’s and explored non-invasive diagnostic tools.
Jitinder Saini Chair of Trustees
Sue Farrington Chief Executive
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Overview
## **Our Vision**
A world where no-one has their life limited by Scleroderma and Raynaud's.
## **Our Purpose**
Our mission is to improve the lives of everyone affected by Scleroderma and Raynaud's. We do this by investing in research, improving awareness, and understanding of the conditions and providing information and support to all those affected.
## **Our Values**
Our values inform how we deliver our services, the choices we make and how we work with, support, and develop our staff and volunteers.
## SRUK is:
**Collaborative** in the way we work.
**Driven** to see real change.
**Trusted** because we are open and honest about the way we work.
**Compassionate** because we always put the person first.
## **Our Strategic Aims - 2017-2022**
During 2021-22, we began work to update our strategic aims and this continued into 2022-23. This will enable us to build on the successes of the past six years, reduce time to diagnosis and improve access to better treatments and care.
## Awareness
Increase awareness of Scleroderma and Raynaud’s with the public and health professionals.
## Empowerment
Enable more people with Scleroderma and Raynaud’s to manage their conditions through access to high quality information, support, and guidance.
## Healthcare
Ensure all people with Scleroderma and Raynaud’s across the UK have access to high quality, integrated health, and social care services, which are responsive to their needs.
## Research
Ensure that research funded by SRUK translates into better prevention, diagnosis, and treatment outcomes.
## Infrastructure
Be an effective and efficient organisation, with the resources we need to achieve our goals.
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Trustees’ Report
## **What we did in 2021-22**
SRUK’s strategy 2017-2022 was informed and shaped by the challenges and needs of our community and provides us with a framework and clear direction of travel for our work.
Below we report on the progress we have made during 2021-22 towards achieving our goals.
## **AWARENESS**
Improving awareness and understanding of Scleroderma and Raynaud’s is a key priority for SRUK.
The condition of Raynaud’s is poorly understood. It is not treated seriously by many healthcare professionals and consequently we do not know exactly how many people are affected or how severely it affects people. Raynaud’s is to date the only known clinical condition considered to be a risk factor for developing Systemic Sclerosis or Scleroderma.
Lack of awareness has led to poor support and treatment of Raynaud’s and delayed diagnosis of Scleroderma, which can have serious and life-threatening consequences.
The health agenda was focussed on vaccinations and a return to “normal” whilst still coping with outbreaks and ensuring that we advocated for those members of our community who were more vulnerable. Throughout the year we continually raised awareness and reminded people that “normal” is not the same for everyone with particular emphasis and increased media pushes during our awareness months in June and February.
## **In 2021-22 we:**
- Continued to run our awareness campaigns to improve understanding and visibility of the conditions using stories from our community about the impact both conditions have on their lives and the continued impact of COVID on people who were clinically extremely vulnerable.
In June for our Scleroderma Awareness Month, we secured national press coverage in The Sunday Telegraph with a story about the need for better treatments and the impact of the delays caused by COVID on people with scleroderma. We had regional radio interviews and secured a piece on Sky News with one of our key supporters whose daughter died of scleroderma.
Over the month we had over 40,789 website users and a 10% increase in our social media engagement compared to our average monthly statistics.
Coverage of scleroderma continued in July when we secured an interview on BBC Asian Network with one of our community and a piece on the Jeremy Vine BBC Radio 2 show with a key supporter.
- Worked with FESCA (Federation of European Scleroderma Associations) to promote World Scleroderma Day and produced an animation, highlighting the challenges of living with the condition, which had over 154,500 views.
- Highlighted the reality of living with Raynaud’s via stories and video diaries from our community for Raynaud’s Awareness Month in February. We secured 17 pieces of media coverage; 7 offline and 10 online and 100% of all coverage included a link to the SRUK website. We had lined up a broadcast piece for Channel 5, which had to be rescheduled to later in the year, due to developing world events.
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During the month 11,855 people took our online Raynaud’s test – 78% increase from February 2021. We had over 46,546 website visitors and social media engagement was up 55% on February 2021.
## **EMPOWERMENT**
Providing access to high quality, evidenced based information and support for people affected by Scleroderma and Raynaud’s to help understand their condition and better manage their symptoms remains a core activity.
During 2021-22, the uncertainty and anxieties around COVID-19 remained an issue for our community, particularly those who are clinically extremely vulnerable. Early research indicated that for some people, who were immunocompromised and taking immuno-suppressive treatments, they may not be mounting as good a response to the vaccines. The news of anti-viral treatments brought some hope, but there was some early confusion about how to access these treatments.
In 2021-22 we:
- Continued to produce accurate information about COVID-19, in particular tackling the confusion about the third COVID-19 dose and the booster programme and how people could receive antiviral treatments, with over 39,000 people accessing the COVID-19 section of our website.
As people were encouraged to return to work and school, this was often a challenging time for our community due to the nature of their condition and we received many phone calls about the challenges they faced explaining their needs to teachers and employers. As a result, we produced a series of Guides for Employers and Schools on Raynaud’s and Scleroderma to improve support, particularly around reasonable adjustments to be made both at school and in the workplace.
We continued the telephone-based support service - Keep in Touch – launched the previous year in response to the growing number of people in our community who were shielding and feeling isolated. People receive a regular phone call to chat with one of our volunteers about absolutely anything. Isolation and anxiety remained a real issue for many of our supporters and many reported this continued to have an impact on their mental and emotional wellbeing.
- Delivered SRUK’s first Virtual Conference in September, which had over 800 people register, from as far afield as Myanmar, Japan, Singapore and Russia. Over 90% reported their understanding of their condition and ability to self-manage had improved because of the sessions and 75% said they would prefer an online conference in the future.
_“I am already so much better informed about myself - just from listening today. I typed down terms for symptoms I had been suffering from - but did not realise were linked until now & I now have the vocabulary to raise these issues so that I can be heard. I realise that I don't have to just put up with ongoing deterioration because I had an unfortunate hand in the genes lottery, some things I will have to continue to accept, but I feel empowered to ask for help so that I can be more purposeful & powerful in my care of myself”._
- Built on the success of the webinar series, we continued to provide content using this platform on topics such as communicating with your doctor; mental health and well-being
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and managing your work/life balance. The webinars were uploaded to our YouTube channel and have had 11,750 views to date.
- Continued our peer-to-peer support work online and on the phone. We now have 15 Support Groups operating across the four nations. Our Helpline Service is supported by 16 volunteers operating seven days a week. Across this year our team handled over 2,500 calls and information queries.
- Embarked on a new project to better understand what the perfect patient information journey should look like, as a patient’s ability to be a proactive partner depends on them having the right information and the appropriate support to use it effectively.
Information and support are not seen as a core part of the current patient pathway, as illustrated by a survey which showed 45% of people post diagnosis still reported low levels of understanding about their condition. We worked with the Patient Information Forum using a seven-step process they have developed bringing together healthcare professionals and patients to look at the challenges, needs and gaps in provision.
The results of phase one identified a complicated information journey, which in some ways was not surprising given the complexity of Scleroderma but what it also highlighted were the many other factors that need to be considered, such as coping with a diagnosis, emotional and mental wellbeing, employment, having a family and the menopause.
Healthcare professionals and patients identified very similar points on the patient pathway where information is needed, with information at diagnosis being the key priority area and in second place treatment options and emotional wellbeing.
Phase two will take place in 2022-23, when the groups will consider what is needed to improve the information and support, whether this is new information, better signposting or other ideas.
## **HEALTHCARE**
We want to ensure that everyone with Scleroderma and Raynaud’s, wherever they live and whatever their circumstances, gets the responsive and person-centred support they need. Key outcomes for SRUK are to ensure that there is equity of access to treatments and that care is properly co-ordinated in line with best practice guidelines.
As previously noted, this year was in part still shaped by the lasting effects of the pandemic and the ongoing confusion about access to vaccines and antivirals.
In 2021-22 we:
- Continued to work with the Rare Autoimmune Rheumatic Disease Alliance (RAIRDA), in particular, on matters relating to access to vaccines and other treatments, around which there a lot of confusion and miscommunication.
The provision of an additional third dose plus the booster was considered important for those in our community who were clinically extremely vulnerable, but a survey led by RAIRDA revealed that nearly a quarter of people with rheumatic diseases had not been able to arrange for the third COVID vaccine dose. The data from the survey was shared with NHSE and the Vaccines Minister.
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We led a collation of other charities and called on the Government to provide protection against the ongoing threat of COVID-19 and other viruses by ensuring:
- Priority access to vaccines and treatments. Eligible people with RAIRDs should continue to have priority access to vaccines and treatments, which includes having their eligibility consistently recorded across primary and secondary care records.
- Improved communication: Governments in each nation need to ensure there is improved communications to people with RAIRDs, and professionals who they engage with, to ensure people are aware of their right to access vaccines and treatments. Patient organisations should be treated as information partners and have clear and ongoing lines of communications with officials within each nation’s health department or NHS oversight body.
-
- Better coding for RAIRDs. NHS Digital and equivalent bodies in other nations should work with RAIRDA and its member charities to increase the consistency of coding for RAIRDs.
- Met with the new Welsh MSK clinical lead, and Health Conditions Policy Manager from the Welsh Government to share our findings from a survey with patients in Wales with rare autoimmune conditions, which highlighted significant issues with delivery of care, and patient outcomes.
- Contributed, as one of two patient organisations to the National Institute for Health and Care Excellence (NICE) Health Technology Appraisal for the use of Nintedanib within interstitial lung disease (ILD) in 2019-20. Nintedanib was shown to reduce the fibrosis which causes ILD, benefiting many people through slowing decline in their lung function. As part of this work SRUK engaged with those affected within the SRUK community to build the case for why patients with SSc-ILD need access to this life-extending and enhancing treatment.
NICE has now approved Nintedanib for patients with Systemic Sclerosis who have interstitial lung disease (SSc-ILD) as well as Pulmonary Fibrosis. The views of our community on the realities of living with this condition helped SRUK to build a case on the need to access to this life-extending and enhancing treatment.
- Joined the Rheumatology Optimisation and Restoration workstream, part of the BestMSK Health Programme with NHS England & NHS Improvement. The recommendations for change highlighted in reports produced by RAIRDA, based on the survey of over 1,300 patients, are being used to inform the work. We contributed to the development of the patient pathway for Connective Tissue Diseases. The pathway takes on a key recommendation from the RAIRDA report, which is that patients seeing multiple specialists should have a named person responsible for coordinating their care.
- Contributed to the Rare Disease Forum – SRUK’s CEO was invited to join the Rare Disease Forum. This group will advise the UK Rare Disease Framework Board on the implementation of the Rare Disease Strategy in England and the devolved nations.
One of the issues we raised was the need for Quality Standards for rare diseases, which has had interest from both patient organisations and clinicians. A meeting was held with a small working group to seek alignment and explore how we might take this work forward. The findings from the group were shared with the team at Department of Health & Social Care and this work will continue in 2022-23.
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- Continued to work in collaboration with the British Society of Rheumatology (BSR), who following a break during COVID, restarted the development of a national clinical audit on Scleroderma which seeks to drive local service improvement.
- Were invited to be part of the working group to review BSR Best Practice Guidelines. The BSR Scleroderma treatment guidelines were originally published in 2016 to complement other evidence-based treatment recommendations and give a practical UK focus. They are being updated to incorporate emerging new treatments.
## **RESEARCH**
SRUK exists to ensure a world where no one has their lives limited by Scleroderma and Raynaud’s, until we ultimately find a cure. A core purpose of the organisation is to fund innovative and groundbreaking research so that our understanding of these conditions is translated into benefits for the community sooner rather than later.
To achieve our goals, SRUK is committed to working in partnership, to increase the capacity of the workforce and leverage resources from other institutions.
## **In 2021-22 we:**
- Jointly funded a Clinical Research Training Fellow with the Medical Research Council. The successful applicant was Dr Nina Goldman who commenced her PhD Studentship titled ‘Defining pathogenic B cell regulation and its role in scleroderma associated interstitial lung disease’. Nina will conduct her research at the Royal Free under the tutelage of Professor Chris Denton and Dr Voon Ong.
- Secured external funding for phase 2 of the Raynaud’s App project. Version 2 of the app was redesigned and developed following feedback from focus groups held with people living with Raynaud’s and clinicians. The app is being deployed in two cohorts, a ‘SRUK’ cohort of people living with Raynaud’s (mix of scleroderma and primary Raynaud’s) and patients with scleroderma participating in a hand MRI imaging study run by Professor Francesco Del Galdo.
There are currently 196 active users using the app since its launch in January. Users receive a monthly e-news update and there is good engagement with a 68.5% average open rate.
- Continued to work with Insilico Medicine and Professors Chris Denton and David Abraham as clinical and scientific advisors, looking at the genes and gene pathways underpinning fibrosis in scleroderma using Machine Learning approaches.
- Re-convened the Patient Registry Project, which was placed on hold during the COVID-19 pandemic. Feedback from the Patient Registry Steering Group confirmed that the project was still, and work is underway to identify the right platform.
- Invested in six grant projects with a combined total of £248,598 which are noted below:
- **SRUK Quality of Life grant call,** two applications were approved by the Board in July 2021
- - The PASTUL Project, led by Professor Chris Denton centres on a newly developed questionnaire ‘Patient Self-Assessment of Skin Thickness in Upper Limb (PASTUL) which will enable scleroderma patients to self-report the extent of skin involvement. It is anticipated
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that PASTUL will have utility in remote monitoring of patients during either standard clinical care or through the clinical trial setting.
- The Mouth in Scleroderma: Improving Pathways to Care, the team led by Professor Liz Walker will work with patients, specialist dentists and rheumatologists to understand the awareness of scleroderma-related dental problems and the current mechanisms for referral of patients to specialist dentistry. Using the information gathered the aim is to to co-produce referral pathways to improve dental care in scleroderma. It is anticipated that these will lead to new clinical guidelines which will address this referral gap and improve QoL through improving oral and dental outcomes.
- **Stratified Medicine of the Future** , SRUK partnered with the World Scleroderma Foundation to launch a new grant, a winner-takes-all competition which offered £100,000 of funding to pump-prime the applicant’s research into future methods of patient stratification, enabling the winner to develop preliminary data or concepts which could be used to support larger consortia-based applications. Eleven expression of interest applications were received and reviewed by the Joint Research Committee in September 2021. Four applicants were invited to submit a full application, which were assessed by peer review and considered by the Joint Research Committee (JRC).
- The JRC recommended ‘Advanced in vitro test systems with integrated multi-"OMICs" to define pathway activation and treatment response scores for patient stratification towards personalised medicine in systemic sclerosis’, a project led by Professor Jorg Distler (Friedrich-Alexander University, Erlangen-Nurnbergh) and Professor Chris Denton (Royal Free Hospital/ UCL) for funding. Following ratification and contracting the winning team presented their research at the 7[th] Systemic Sclerosis World Congress in March 2022.
During the year funding was awarded to **three additional projects** , two of these were invited resubmissions and one project where a case was made for exceptional funding.
- Wearable Ambulatory Raynaud’s Measurement Recorder (WARMER) project was previously submitted to the World Scleroderma Foundation and SRUK Joint Research call on Outcome Measures for systemic sclerosis. The funding envelope did not allow for this project to be funded despite it scoring highly in peer review and the team were encouraged to reapply to SRUK. In this project the team, led by Dr John Pauling at the Royal United Hospitals Bath NHS Foundation Trust in partnership with the SME Thrive wearables, propose to develop a wearable device capable of providing an objective measurement of a person’s Raynaud’s.
- ‘Prognostic uncertainty in SSc-ILD: the use of novel deep-learning techniques to enhance prognostic evaluation’ was submitted by Dr Elisabetta Renzoni of the Royal Brompton. This application aimed to understand prognostic uncertainty surrounding interstitial lung disease in patients with scleroderma and evaluate the use of a pre-existing deep learning algorithm to patients at risk of ILD progression from baseline HRCT lung scans.
- Exceptional funding was granted and co-funded in partnership with Lupus UK. Dr Megan Rutter at the University of Nottingham working with Dr Fiona Pearce and Professor Peter Lanyon were awarded funding for their project titled ‘The Effect of COVID-19 On People with Lupus and Scleroderma: A Whole Population Study in England.’ Dr Rutter’s research will access data held within Public Health England’s (PHE) RECORDER (Registration of Complex Rare Diseases – Exemplars in Rheumatology) to understand the effect of modifiable risk
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factors such as shielding and immunosuppressant use on infection and death in people with Lupus and Scleroderma during the second wave of the COVID-19 pandemic.
- Continued our research communications programme to inform and engage patients and the public with SRUK and more broadly funded research into Raynaud’s and Scleroderma. Over the past year the research team have written, published and promoted via social media over pieces covering COVID research relevant for those living with Scleroderma, SRUK funded research and initiatives like the Raynaud’s App.
## **What we will do in 2022-23:**
## For our work in Awareness, we will:
Continue to deliver a series of public awareness campaigns around our two campaign peaks, the Scleroderma Awareness Campaign in June and Raynaud’s Awareness Month in February.
Strengthen our network of journalists and build relationships with the medical and science press to maintain our position as the organisation for information and comment on matters relating to Scleroderma and Raynaud’s.
Expand our network of patient ambassadors, supporting them to share their stories and act as ambassadors with local and regional media, to increase awareness about the conditions.
## For our work in Empowerment, we will:
Continue to respond to any ongoing need for up-to-date information about Covid-19
Develop and grow our support group network to achieve coverage across the UK, utilising technology to support and connect people.
Continue to develop our social media networks for those affected by the conditions, based on insights into audience behaviours to identify content needed.
## For our work in Healthcare, we will:
Continue to work with the NHS and healthcare professionals to ensure information is available, particularly at point of diagnosis.
Continue our programme to establish SRUK presence in all clinics through key literature and visits.
Work with RAIRDA to drive forward the recommendations arising from the Patient Survey report with key organisations to ensure the voice of Scleroderma & Raynaud’s is represented.
## For our work in Research, we will:
Continue to involve patients in our research programme to put their needs at the heart of the work we do.
Continue to implement the five-year research strategy to ensure we make the most effective use of the charity’s resources.
Progress our work on a Raynaud’s App to support research on early diagnosis and continue to explore the development of a Patient Registry.
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Trustees’ Report
## **FINANCIAL REVIEW**
This report covers the period from 1st April 2021 to the 31 March 2022.
## **Overview**
2021-2022 has been a successful year for the Charity with fundraising income of £1,986,165 generating a surplus of £892,988 before investment gains. We were fortunate to receive a very generous legacy during the year to support our work.
We awarded new research grants totalling £248,598. This continues our investment of significant amounts into our work programme to drive forward our focus on improving our impact and our reach to directly benefit people affected by Scleroderma and Raynaud’s.
We have maintained a long-term approach towards financial planning and of investment in key areas while adapting to the effects of the pandemic and taking into account the need for various income streams to recover.
## **How we raised our money**
Key income streams for the charity comprise: Membership; Donations; Legacies; Trading and Fundraising Activities. In 2021-22 the total income for the group was £1,986,165.
We received £1,964,871 in donations and legacies; and £9,756 from membership, conference and other activities.
We are reporting investment income of £11,538.
The trading subsidiary of the charity brought in revenues of £26,939.
SRUK is registered with the Fundraising Regulator and is a member of the Institute of Fundraising. Our fundraising is carried out by a team of professional fundraisers based in our London headquarters, together with volunteers in their local communities. The team’s activities are supervised by the Senior Management Team and follow recommended fundraising codes of practice. We did not receive any complaints about our fundraising activities in 2021-22.
## **How we spent our money**
During 2021-22 our total charitable expenditure came to £885,722 a decrease of £132,511 on the previous year. This expenditure included £508,442 spent on Research.
We also invested in the development of a range of services:
- Provision of information and support across all channels – print, online, phone and events. This included the development of the website and online platforms.
- Raising awareness of Scleroderma and Raynaud’s with health care professionals and public.
- Establishing our campaigning & advocacy work through partnerships & alliances.
- Developing our infrastructure to ensure our organisation is efficient, effective and complies with all legal and regulatory requirements.
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## **Balance Sheet**
As of 31 March 2022, total funds were £5,290,688 for the Group and £5,287,500 for the Charity.
## **Reserves Policy**
The Trustee Board has specified a reserves policy, which ensures that the Charity has sufficient funds to meet the cost of its day-to-day activities and is able to cope with the financial impact of unforeseen events. In addition, where possible funds should be set aside to meet future planned expenditure. These reserves are known as the Operating Reserve.
## **Operating Reserve**
The charity should hold sufficient financial reserves to ensure it can continue to operate in the event of unforeseen and potentially financially damaging circumstances arising.
This policy for maintaining a twelve-month operating reserve was retained throughout 2021-22 due to the ongoing effects of the Covid-19 pandemic.
This amounts to operating reserves of £958,000 in the current year as against the current free reserves of the Group at £2,789,595 and Charity at £2,786,407. The Trustees believe that the levels of reserves are adequate but not excessive given the current economic challenges. Surplus funds will be added to the designated fund to support key research and development projects.
## **Investment Policy**
Rathbones Investment Management Limited continue as SRUK’s investment managers. Over the year the value of these investments increased to £580,886.
The investment manager reports on a quarterly basis on the performance of the investments under management. These reports are incorporated into the quarterly management accounts and the year-end accounts of the Charity and reviewed by the Trustees at the quarterly board meetings.
The Board of Trustees carries out an annual review of the investment principles under which the manager operates and hold an annual review of the performance of the portfolio with the investment manager.
## **Grants Policy**
Grants are accounted for fully in the year they are awarded in accordance with Charities SORP (FRS 102) requirements. They are therefore treated as liabilities in the accounts in the year they are awarded.
## **Trading Subsidiary**
Over 2021-22 SRUK’s trading subsidiary brought in £26,939 of income.
£2,819 of staff costs were paid back to charity for the running of the shop, bringing total expenditure to £24,321.
## **Going Concern**
After making appropriate enquiries, the trustees have a reasonable expectation that the charity has adequate resources to continue in operational existence for the foreseeable future. For this reason, they continue to adopt the going concern basis in preparing the financial statements.
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Additional forecasting and reporting have been introduced since the beginning of the COVID-19 crisis, and the organisation has worked to understand and mitigate against additional risk where possible.
## **Principal Risks and Uncertainties:**
SRUK is committed to effective risk management as an integral part of ensuring good corporate governance. Informed risk-taking helps to improve performance, manage our threats and opportunities and to create an environment of ‘no surprises’. This will enable us to get the right balance between innovation and change.
We continue to develop, review and strengthen our risk management processes, enabling us to conclude that major risks have been identified reviewed and where possible mitigated.
Key principal risks identified include the need for:
- Clear strategic direction
- Sufficient financial resources
To help mitigate these risks, SRUK has implemented various initiatives, including the development of a five-year strategy, based on key outcomes from the organisation’s theory of change. We began the process of updating our strategy for the next five years and this work will be completed in 202223.
SRUK has an annual financial budget and operational plan aimed at managing financial risks and progressing the strategic plan. These are monitored on a quarterly basis by the Board.
A fundraising strategy outlines how SRUK will raise the money to meet its strategic goals.
## **Structure, Governance and Management**
Scleroderma & Raynaud’s UK (SRUK) is a Charitable Incorporated Organisation, registered charity number: 1161828
SRUK is governed by its Constitution.
The principal objects of the charity and the group are:
- (i) to relieve persons suffering from Raynaud's and Scleroderma (Systemic Sclerosis), including the provision of financial support for such persons and their families in need;
- (ii) to advance the education and awareness of the public and health professionals in all aspects of Raynaud's and scleroderma, including the provision and production of educational literature on these disorders; and
- (iii) to provide financial support for research into the cause, treatment, care and prevention of both Raynaud's and Scleroderma and the dissemination of the results of such research for the public benefit.
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## **Method of Appointment or Election of Trustees**
The management of the charity and the group is the responsibility of the Trustees who are elected and co-opted under the terms of the SRUK Constitution, registered with the Charity Commission on 26 May 2015.
## **Organisational Structure and Decision Making**
The trustees who served during the year are set out on page 37. The trustees have been selected for their expertise and professional skills. They meet quarterly with the Chief Executive.
Peer reviewers are invited to assist with the review of grant applications made to SRUK and their recommendations are reported back to the trustees who then approve or reject grant applications on merit or on the funding available. A Research sub-committee brings further rigour to the process.
## **Key Management Remuneration**
SRUK is committed to a policy of equal pay and aims to ensure that salaries reflect the knowledge, skills, behaviours and capabilities required for satisfactory performance in each role whilst also demonstrating appropriate use of charitable donations. Salaries are benchmarked against the voluntary sector and where appropriate, other relevant job markets. Remuneration for key management personnel is handled in the same way as for all other staff.
## **Public Benefit**
We have considered the Charity Commission's general guidance on public benefit when reviewing our aims and objectives and planning future activities. The Trustees always ensure that the activities undertaken are in line with the charitable objectives and aims of SRUK.
As highlighted in this report, some of our research grants are specifically targeted at trying to determine the cause of Scleroderma and Raynaud’s, thereby helping the general population in finding better treatments in the future.
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## **STATEMENT OF TRUSTEES RESPONSIBILITIES AND CORPORATE GOVERNANCE**
## **Trustees’ responsibilities statement**
The Trustees are responsible for preparing the Trustees’ Report and the financial statements in accordance with applicable law and regulations.
Company law requires the Trustees to prepare financial statements for each financial year and Trustees have elected to prepare the financial statements in accordance with United Kingdom Generally Accepted Accounting Practice (United Kingdom Accounting Standards and applicable law). 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 the group and of the incoming resources and application of resources, including the income and expenditure, of the charitable group for that period.
In preparing these financial statements, the Trustees are required to:
- Select the most suitable accounting policies and then apply them consistently.
- Observe the methods and principles in the Charity SORP.
- Make judgments and accounting estimates that are reasonable and prudent.
- State whether applicable UK Accounting Standards have been followed, subject to any material departures disclosed and explained in the financial statements.
- Prepare the financial statements on the going concern basis unless it is inappropriate to presume that the charitable group will continue in business.
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 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 the group and ensuring their proper application under charity law and hence for taking reasonable steps for the prevention and detection of fraud and other irregularities.
In so far as each of the Trustees is aware:
- there is no relevant audit information of which the charitable company’s auditor are unaware
- the Trustees have each taken all steps that they ought to have taken to make themselves aware of any relevant audit information and to establish that the auditors are aware of that information.
The Trustees are responsible for the maintenance and integrity of the corporate and financial information included on the company’s website. Legislation in the United Kingdom governing the preparation and dissemination of financial statements may differ from legislation in other jurisdictions.
This report was approved by the Board of Trustees on 20 December 2022 and signed on their behalf by:
Gerard Donohue, Treasurer
16
Independent Auditor’s Report
## **Independent auditor’s report to the trustees of Scleroderma & Raynaud’s UK**
## **Opinion**
We have audited the financial statements of Scleroderma & Raynaud’s UK for the year ended 31 March 2022 which comprise the Consolidated Statement of Financial Activities, the Consolidated and Charity Balance Sheets, the Consolidated Statement of Cash Flows and notes to the financial statements, including a summary of significant accounting policies. The financial reporting framework that has been applied in their preparation is applicable law and United Kingdom Accounting Standards, including Financial Reporting Standard 102 _The Financial Reporting Standard applicable in the UK and Republic of Ireland_ (United Kingdom Generally Accepted Accounting Practice).
In our opinion, the financial statements:
- give a true and fair view of the state of the group’s and of the parent charity’s affairs as at 31 March 2022 and of the group’s net movement in funds for the year then ended;
- have been properly prepared in accordance with United Kingdom Generally Accepted Accounting Practice; and
- have been prepared in accordance with the requirements of the Charities Act 2011.
## **Basis for opinion**
We have been appointed as auditor under section 144 of the Charities Act 2011 and report in accordance with the Act and relevant regulations made or having effect thereunder. 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 group in accordance with the ethical requirements that are relevant to our audit of the financial statements in the UK, including the FRC’s Ethical Standard, and we have fulfilled our other ethical responsibilities in accordance with these requirements. We believe that the audit evidence we have obtained is sufficient and appropriate to provide a basis for our opinion.
## **Conclusions relating to going concern**
In auditing the financial statements, we have concluded that the trustees’ use of the going concern basis of accounting in the preparation of the financial statements is appropriate.
Based on the work we have performed, we have not identified any material uncertainties relating to events or conditions that, individually or collectively, may cast significant doubt on the group’s ability to continue as a going concern for a period of at least twelve months from when the financial statements are authorised for issue.
Our responsibilities and the responsibilities of the trustees with respect to going concern are described in the relevant sections of this report.
## **Other information**
The trustees are responsible for the other information. The other information comprises the information included in the Trustees’ Report. Our opinion on the financial statements does not cover the other information and, except to the extent otherwise explicitly stated in our report, we do not express any form of assurance conclusion thereon.
In connection with our audit of the financial statements, our responsibility is to read the other information and, in doing so, consider whether the other information is materially inconsistent with the financial statements or our knowledge obtained in the audit or otherwise appears to be materially misstated. If we identify such material inconsistencies or apparent material misstatements, we are
17
Independent Auditor’s Report
required to determine whether there is a material misstatement in the financial statements or a material misstatement of the other information. If, based on the work we have performed, we conclude that there is a material misstatement of this other information, we are required to report that fact. We have nothing to report in this regard.
## **Matters on which we are required to report by exception**
We have nothing to report in respect of the following matters in relation to which the Charities (Accounts and Reports) Regulations 2008 require us to report to you if, in our opinion:
- adequate accounting records have not been kept by the parent charity; or
- sufficient accounting records have not been kept; or
- the parent charity financial statements are not in agreement with the accounting records and returns; or
- we have not received all the information and explanations we require for our audit.
## **Responsibilities of trustees for the financial statements**
As explained more fully in the trustees’ responsibilities statement set out on page 16, the trustees 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 group’s and the parent charity’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 group or the parent charity or to cease operations, or have no realistic alternative but to do so.
## **Auditor’s responsibilities for the audit of the financial statements**
Our objectives are to obtain reasonable assurance about whether the financial statements as a whole are free from material misstatement, whether due to fraud or error, and to issue an auditor’s report that includes our opinion. Reasonable assurance is a high level of assurance but is not a guarantee that an audit conducted in accordance with ISAs (UK) will always detect a material misstatement when it exists. Misstatements can arise from fraud or error and are considered material if, individually or in the aggregate, they could reasonably be expected to influence the economic decisions of users taken on the basis of these financial statements.
Irregularities, including fraud, are instances of non-compliance with laws and regulations. We design procedures in line with our responsibilities, outlined above, to detect material misstatements in respect of irregularities, including fraud. The extent to which our procedures are capable of detecting irregularities, including fraud is detailed below:
Based on our understanding of the group and the environment in which it operates, we identified that the principal risks of non-compliance with laws and regulations related to Charity Law, and we considered the extent to which non-compliance might have a material effect on the financial statements. We also considered those laws and regulations that have a direct impact on the preparation of the financial statements such as the Charities Act 2011 and consider other factors such as payroll tax.
We evaluated management’s incentives and opportunities for fraudulent manipulation of the financial statements (including the risk of override of controls) and determined that the principal risks were
18
Independent Auditor’s Report
related to improper recognition of revenue, particularly the completeness and cut-off of legacy income and management override of controls. Audit procedures performed by the engagement team included:
- Inspecting correspondence with regulators and tax authorities;
- Discussions with management including consideration of known or suspected instances of non-compliance with laws and regulation and fraud;
- Evaluating management’s controls designed to prevent and detect irregularities;
- Identifying and testing journals; and
- Challenging assumptions and judgements made by management in their critical accounting estimates.
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 non-compliance. 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 for the audit of the financial statements is located on the Financial Reporting Council’s website at: www.frc.org.uk/auditorsresponsibilities. This description forms part of our auditor’s report.
## **Use of our report**
This report is made solely to the charity’s trustees, as a body, in accordance with section 144 of the Charities Act 2011 and regulations made under section 154 of that Act. Our audit work has been undertaken so that we might state to the charity's trustees those matters we are required to state to them in an Auditor's report and for no other purpose. To the fullest extent permitted by law, we do not accept or assume responsibility to anyone other than the charity’s trustees as a body for our audit work, for this report, or for the opinions we have formed.
Haysmacintyre LLP Statutory Auditors 10 Queen Street Place London EC4R 1AG
> Date: 27 January 2023
Haysmacintyre LLP is eligible to act as an auditor in terms of section 1212 of the Companies Act 2006
19
## **SCLERODERMA & RAYNAUD’S UK CONSOLIDATED STATEMENT OF FINANCIAL ACTIVITIVES (INCORPORATING AN INCOME AND EXPENDITURE ACCOUNT) FOR THE YEAR ENDED 31 MARCH 2022**
|**Notes**
**Total**
**Funds**
**2022**
**£**
Total
Funds
2021
£
**INCOME FROM:**
Donations and legacies
5
**1,964,871**
2,226,255
Investments
7
**11,538**
9,083
Membership and conferences
6
**9,756**
31,588
**Total fundraising income**
**1,986,165**
2,266,926
**EXPENDITURE ON:**
Raisingfunds: donations and legacies
9
**(210,063)**
(163,077)
**Total fundraising expenditure**
**(210,063)**
(163,077)
**Fundraising Contribution**
**1,776,102**
2,103,849
Trading income
8
**26,939**
38,709
Tradingexpenditure
8
**(24,321)**
(35,661)
**Contribution from trading activities**
**2,618**
3,048
**Net income available for charitable**
**purposes**
**1,778,720**
2,106,897
**Charitable expenditure**
Research
9
**(508,442)**
(661,499)
Services to members
9
**(377,280)**
(356,734)
**Total charitable expenditure**
**(885,722)**
(1,018,233)
**Net income/(expenditure) before**
**(loss)/gain on investments**
**892,998**
1,088,664
**Represented by**
Total income
**2,013,104**
2,305,635
Total expenditure
9
**(1,120,106)**
(1,216,971)
**Net income/(expenditure) before**
**(loss)/gain on investments**
**892,998**
1,088,664|**Notes**
**Total**
**Funds**
**2022**
**£**
Total
Funds
2021
£
**INCOME FROM:**
Donations and legacies
5
**1,964,871**
2,226,255
Investments
7
**11,538**
9,083
Membership and conferences
6
**9,756**
31,588
**Total fundraising income**
**1,986,165**
2,266,926
**EXPENDITURE ON:**
Raisingfunds: donations and legacies
9
**(210,063)**
(163,077)
**Total fundraising expenditure**
**(210,063)**
(163,077)
**Fundraising Contribution**
**1,776,102**
2,103,849
Trading income
8
**26,939**
38,709
Tradingexpenditure
8
**(24,321)**
(35,661)
**Contribution from trading activities**
**2,618**
3,048
**Net income available for charitable**
**purposes**
**1,778,720**
2,106,897
**Charitable expenditure**
Research
9
**(508,442)**
(661,499)
Services to members
9
**(377,280)**
(356,734)
**Total charitable expenditure**
**(885,722)**
(1,018,233)
**Net income/(expenditure) before**
**(loss)/gain on investments**
**892,998**
1,088,664
**Represented by**
Total income
**2,013,104**
2,305,635
Total expenditure
9
**(1,120,106)**
(1,216,971)
**Net income/(expenditure) before**
**(loss)/gain on investments**
**892,998**
1,088,664|
|---|---|
|Net gain on investments
15
**6,613**
77,520
**Net movement in funds**
**899,611**
1,166,184
**Reconciliation of funds**
Fund balances brought forward
**4,391,077**
3,224,893
**Total funds carried forward**
20
**5,290,688**
4,391,077||
The charity has no recognised gains or losses other than the results for the year as set out above. All of the activities of the charity are classed as continuing. There was no restricted income or expenditure in 2021 or 2022.
20
## **SCLERODERMA & RAYNAUD’S UK CONSOLIDATED AND CHARITY BALANCE SHEETS**
## **FOR THE YEAR ENDED 31 MARCH 2022**
|**Notes**
**FIXED ASSETS**
Intangible assets
13
Tangible assets
14
Investments
15
**CURRENT ASSETS**
Stock
16
Debtors: amounts falling due within one
year
17
Cash at bank and in hand
**CREDITORS**: amounts falling due within
one year
18
**NET CURRENT ASSETS**
Total assets less current liabilities
**NET ASSETS**
**CAPITAL AND RESERVES**
Designated funds
19 & 20
Unrestricted funds
19 & 20|**Group**
Group
**Charity**
Charity
**2022**
2021
**2022**
2021
**£**
£
**£**
£
**4,409**
7,521
**4,409**
7,521
**1,241**
-
**1,241**
-
**580,886**
570,675
**580,886**
570,675|
|---|---|
||**586,536**
578,196
**586,536**
578,196
**7,113**
9,420
**-**
-
**1,543,670**
1,003,460
**1,566,933**
1,029,718
**3,983,362 **
3,473,360
**3,963,433**
3,456,166|
||**5,534,145**
4,486,240
**5,530,366**
4,485,884
**(829,993)**
(673,359)
**(829,402)**
(673,572)|
||**4,704,152 **
3,812,881
**4,700,964 **
3,812,312|
||**5,290,688**
4,391,077
**5,287,500**
4,390,508|
||**5,290,688**
4,391,077
**5,287,500**
4,390,508|
||**2,501,093**
2,781,781
**2,501,093**
2,781,781
**2,789,595**
1,609,296
**2,786,407 **
1,608,727|
||**5,290,688**
4,391,077
**5,287,500**
4,309,508|
These financial statements were approved and authorised for issue by the board on 20 December 2022 and are signed on their behalf by
Gerard Donohue, Treasurer
21
**SCLERODERMA & RAYNAUD’S UK CONSOLIDATED CASH FLOW STATEMENT FOR THE YEAR ENDED 31 MARCH 2022**
|**Cash flows from operating activities**
Net income/(expenditure) for the year (as per the
Consolidated Statement of Financial Activities)
Adjustments for:
Amortisation charges
Depreciation charges
Dividends, interest and rents from investments
Decrease in current assets held for resale
Decrease in stocks
(Increase)/decrease in debtors
Increase in creditors
**Net cash provided by / (used in) operating activities**
**Cash flows from investing activities**
Dividends, interest and rents from investments
Purchase of Tangible and intangible fixed assets
Purchase of investments
Sale of investments and movement in cash balances
Gains on investments
**Net cash (used in) / provided by investing activities**
Change in cash and cash equivalents in the year
Cash and cash equivalents at the beginning of the year
Cash and cash equivalents at the end of the year|**2022**
**£**
**899,611**
**3,112**
**138**
**(11,538)**
**-**
**2,307**
**(540,210)**
**156,635**|**2022**
**£**
**510,055**
**(53)**
**510,002**
**3,473,360**|2021
£
1,166,184
1,815
-
(9,083)
130,000
1,647
607,903
207,645|2021
£
2,106,111
(81,980)
2,024,131
1,449,229|
|---|---|---|---|---|
||**11,538**
**(1,379)**
**(179,995)**
**176,396**
**(6,613)**||9,083
(9,336)
(349,791)
345,584
(77,520)||
||||||
|||**3,983,362 **||3,473,360|
22
**SCLERODERMA & RAYNAUD’S UK NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 MARCH 2022**
## **1. GENERAL INFORMATION**
Scleroderma & Raynaud’s UK (‘the Charity’ or ‘SRUK’) and its subsidiary (together “the Group”) support the research of Raynaud’s and Scleroderma diseases and offer advice and support to individuals suffering from the conditions throughout the UK.
Scleroderma & Raynaud’s UK is a public benefit entity having registered charity number 1161828 and was incorporated in England. The address of its registered office is Bride House, 18-20 Bride Lane, London, EC4Y 8EE.
## **2. ACCOUNTING POLICIES**
## **a) Basis of Preparation of Financial Statements**
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 2019) – (the Statement of Recommended Practice for Charities (SORP 2015) (Second Edition, effective 1 January 2019)), the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS 102) and the Charities Act 2011.
The SRUK 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.
The statement of financial activities (SOFA) and balance sheet consolidate the financial statements of the Charity and its subsidiary undertaking being RSA Trading Company Limited. The results of the subsidiary are consolidated on a line by line basis after the elimination of intra-group transactions. Control has been obtained by the ownership of shares.
## **b) Going concern**
The trustees have assessed whether the use of the going concern assumption is appropriate in preparing these financial statements. The trustees have made this assessment in respect to a period of one year from the date of approval of these financial statements and have considered the impact of the coronavirus pandemic on the charity’s operations. The Trustees confirm that there are no material uncertainties about the ability of the charity to continue as a going concern. The charity therefore continues to adopt the going concern basis in preparing its financial statements.
## **c) Fund Accounting**
General funds are unrestricted funds which are available for use at the discretion of the Trustees in furtherance of the general objectives of the charity and which have not been designated for other purposes.
Designated funds are unrestricted funds earmarked by the Trustees for particular purposes.
Restricted funds are funds which are to be used in accordance with specific restrictions imposed by donors or which have been raised by the charity for particular purposes. The costs of raising and administering such funds are charged against the specific fund. The aim and use of each restricted fund is set out in the notes to the financial statements.
23
**SCLERODERMA & RAYNAUD’S UK NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 MARCH 2022**
## **2. ACCOUNTING POLICIES (continued)**
## **d) Income**
All income is recognised once the charity has entitlement to the income, it is probable that the income will be received and the amount of income receivable can be measured reliably. For legacies, entitlement is taken as the earlier of the date on which either: the charity is aware that probate has been granted, the estate has been finalised and notification has been made by the executor(s) to the Trust that a distribution will be made, or when a distribution is received from the estate. Receipt of a legacy, in whole or in part, is only considered probable when the amount can be measured reliably and the charity has been notified of the executor's intention to make a distribution. Where legacies have been notified to the charity, or the charity is aware of the granting of probate, and the criteria for income recognition have not been met, then the legacy is treated as a contingent asset and disclosed if material.
Donated services or facilities are recognised when the charity has control over the item, any conditions associated with the donated item have been met, the receipt of economic benefit from the use of the charity of the item is probable and that economic benefit can be measured reliably. In accordance with the Charities SORP (FRS 102). The general volunteer time of the friends is not recognised and refer to the Trustees' Report for more information about their contribution.
On receipt, donated professional services and donated facilities are recognised on the basis of the value of the gift to the charity which is the amount the charity would have been willing to pay to obtain services or facilities of equivalent economic benefit on the open market; a corresponding amount is then recognised in expenditure in the period of receipt.
Income tax recoverable in relation to donations received under Gift Aid or deeds of covenant is recognised at the time of the donation.
Income tax recoverable in relation to investment income is recognised at the time the investment income is receivable.
## **e) Expenditure**
Expenditure is recognised once there is a legal or constructive obligation to transfer economic benefit to a third party, it is probable that a transfer of economic benefits will be required in settlement and the amount of the obligation can be measured reliably.
Expenditure is classified under the principal categories of charitable and other expenditure rather than the type of expense, in order to provide more useful information to users of the accounts.
Cost of raising funds are those incurred in seeking voluntary contributions, and those incurred in trading activities that raise funds but do not include the costs of disseminating information in support of the charitable activities.
Charitable activities comprise direct expenditure including direct staff costs attributable to the activity.
Support costs are those costs incurred directly in support of expenditure on the objects of the charity and include project management.
Governance costs are those incurred in connection with the management of SRUK's assets, organisational administration and compliance with constitutional and statutory requirements.
Support and Governance costs are allocated on the basis of time spent on each activity.
Grants are accounted for fully in the year they are awarded in accordance with Charities SORP (FRS 102) requirements. They are therefore treated as liabilities in the accounts in the year they are awarded, where they have not been paid at the year end.
24
**SCLERODERMA & RAYNAUD’S UK NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 MARCH 2022**
## **2. ACCOUNTING POLICIES (continued)**
## **f) Tangible Fixed Assets**
All assets costing more than £1,000 are capitalised.
Tangible fixed assets are carried at cost or valuation, net of depreciation and any provision for impairment. Depreciation is not charged on freehold land. Depreciation is provided at rates calculated to write off the cost or valuation of fixed assets, less their estimated residual value, over their expected useful lives on the following bases:
Office equipment 20% straight line
## **g) Intangible Fixed Assets**
All assets costing more than £1,000 are capitalised.
Intangible fixed assets are carried at cost or valuation, net of amortisation and any provision for impairment. Amortisation is provided at rates calculated to write off the cost or valuation of fixed assets, less their estimated residual value, over their expected useful lives on the following bases:
20% straight line
## **h) Revaluation of tangible fixed assets**
The charity has adopted the cost model whereby items of property, plant and equipment are measured at cost less any accumulated depreciation and any accumulated impairment losses.
## **i) Building held for sale**
The property held for sale is held in the accounts at fair value. The asset has been impaired in the year and the building has been sold to a third party since the year end.
## **j) Investments**
Fixed asset investments are a form of financial instrument and are initially recognised at their transaction cost and subsequently measured at fair value at the Balance Sheet date, unless fair value cannot be measured reliably in which case it is measured at cost less impairment. Investment gains and losses, whether realised or unrealised, are combined and shown in the heading ‘Gains/(losses) on investments’ in the Statement of Financial Activities.
Subsidiary undertakings:
Investments in subsidiaries are valued at cost less provision for impairment.
- **k) Interest receivable**
Interest on funds held on deposit is included when receivable and the amount can be measured reliably by the charity; this is normally upon notification of the interest paid or payable by the Bank.
## **l) Stocks**
Stocks are valued at the lower of cost and net realisable value after making due allowance for obsolete and slow-moving stocks. Cost includes all direct costs and an appropriate proportion of fixed and variable overheads.
## **m) Debtors**
Trade and other debtors are recognised at the settlement amount after any trade discount offered.
Prepayments are valued at the amount prepaid net of any trade discounts due.
**n) Cash and cash equivalents** Cash at bank and in hand includes cash and short term highly liquid investments with a short maturity of three months or less from the date of acquisition or opening of the deposit or similar account.
25
**SCLERODERMA & RAYNAUD’S UK NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 MARCH 2022**
## **2. ACCOUNTING POLICIES (continued)**
## **o) Liabilities and provisions**
Liabilities are recognised when there is an obligation at the Balance Sheet date as a result of a past event, it is probable that a transfer of economic benefit will be required in settlement, and the amount of the settlement can be estimated reliably. Liabilities are recognised at the amount that the charity anticipates it will pay to settle the debt or the amount it has received as advanced payments for the goods or services it must provide. Provisions are measured at the best estimate of the amounts required to settle the obligation. Where the effect of the time value of money is material, the provision is based on the present value of those amounts, discounted at the pre-tax discount rate that reflects the risks specific to the liability. The unwinding of the discount is recognised within interest payable and similar charges.
## **p) Financial Instruments**
The Charity only enters into basic financial instruments transactions that result in the recognition of financial assets and liabilities like trade and other debtors and creditors, loans from banks and other third parties, loans to related parties and investments in non-puttable ordinary shares.
Debt instruments (other than those wholly repayable or receivable within one year), including loans and other accounts receivable and payable, are initially measured at present value of the future cash flows and subsequently at amortised cost using the effective interest method. Debt instruments that are payable or receivable within one year, typically trade payables or receivables, are measured, initially and subsequently, at the undiscounted amount of the cash or other consideration expected to be paid or received. However if the arrangements of a shortterm instrument constitute a financing transaction, like the payment of a trade debt deferred beyond normal business terms or financed at a rate of interest that is not a market rate or in case of an out-right short-term loan not at market rate, the financial asset or liability is measured, initially, at the present value of the future cash flow discounted at a market rate of interest for a similar debt instrument and subsequently at amortised cost.
Financial assets that are measured at cost and amortised cost are assessed at the end of each reporting period for objective evidence of impairment. If objective evidence of impairment is found, an impairment loss is recognised in the profit and loss account.
For financial assets measured at amortised cost, the impairment loss is measured as the difference between an asset's carrying amount and the present value of estimated cash flows discounted at the asset's original effective interest rate. If a financial asset has a variable interest rate, the discount rate for measuring any impairment loss is the current effective interest rate determined under the contract.
For financial assets measured at cost less impairment, the impairment loss is measured as the difference between an asset's carrying amount and best estimate, which is an approximation of the amount that the Charity would receive for the asset if it were to be sold at the balance sheet date.
Financial assets and liabilities are offset and the net amount reported in the Balance Sheet when there is an enforceable right to set off the recognised amounts and there is an intention to settle on a net basis or to realise the asset and settle the liability simultaneously.
## **q) Taxation**
The charity is exempt from tax on its charitable activities.
## **r) Termination benefits**
Settlement agreements are recognised in the period they are incurred.
26
**SCLERODERMA & RAYNAUD’S UK NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 MARCH 2022**
## **3. JUDGEMENTS IN APPLYING ACCOUNTING POLICIES AND KEY SOURCES OF ESTIMATION UNCERTAINTY**
Estimates and judgements are continually evaluated and are based on historical experience and other factors, including expectations of future events that are believed to be reasonable under the circumstances.
Critical accounting estimates and assumptions:
The charity makes estimates and assumptions concerning the future. The resulting accounting estimates and assumptions will, by definition, seldom equal the related actual results. The estimates and assumptions that have a significant risk of causing a material adjustment to the carrying amounts of assets and liabilities within the next financial year are discussed below.
Critical areas of judgement:
- (i) Useful economic lives of tangible assets
The annual depreciation charge for tangible assets is sensitive to changes in the estimated useful economic lives and residual values of the assets. The useful economic lives and residual values are re-assessed annually. They are amended when necessary to reflect current estimates, based on technological advancement, future investments, economic utilisation and the physical condition of the assets. See note 14 for the carrying amount of the tangible fixed assets and note 2(f) for the useful economic lives for each class of assets.
- (ii) Impairment of fixed assets
At regular intervals, and at least annually, management review the carrying value of tangible fixed assets to determine whether this fairly represents the recoverable amount from their use. The carrying value is compared to the recoverable amount, defined as the higher of:
- Value in use is calculated from expected earnings streams or savings from continued employment of the asset
- Realisable value on a disposal
- (iii) Accrued grants payable
Using the accruals basis of accounting, grants payable are matched to the period or are reported when the expense occurs, not when the cash is paid.
## **4. NET INCOME/(EXPENDITURE) FOR THE YEAR**
Net expenditure for the year is stated after charging:
|Amortisation on owned assets
Depreciation on owned assets
Auditor’s remuneration|**Group**
**Charity**
**2022**
2021
**2022**
2021
**£**
£
**£**
£
**3,112**
1,815
**3,112**
1,815
**138**
-
**138**
-
**10,000**
9,400
**10,000**
9,400|
|---|---|
27
## **SCLERODERMA & RAYNAUD’S UK NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 MARCH 2022**
|**5.**
**DONATIONS AND LEGACIES**
Group & Charity
Donations
Legacies
**6.**
**MEMBERSHIP AND CONFERENCE INCOME**
Group & Charity
Membership income
RAIRDA
**7.**
**INVESTMENT INCOME**
Group & Charity
Dividend income
Interest income
**8.**
**TRADING ACTIVITIES**
**Income/Direct**
**Support Cost**
Group
**Costs**
**Allocation**
**2022**
**2022**
**£**
**£**
Trading income
**26,939**
**-**
Trading costs
**(24,321)**
**-**
Trading net profit/(loss)
**2,618**
**-**
Contribution from trading activities
**2,618**
**-**|**5.**
**DONATIONS AND LEGACIES**
Group & Charity
Donations
Legacies
**6.**
**MEMBERSHIP AND CONFERENCE INCOME**
Group & Charity
Membership income
RAIRDA
**7.**
**INVESTMENT INCOME**
Group & Charity
Dividend income
Interest income
**8.**
**TRADING ACTIVITIES**
**Income/Direct**
**Support Cost**
Group
**Costs**
**Allocation**
**2022**
**2022**
**£**
**£**
Trading income
**26,939**
**-**
Trading costs
**(24,321)**
**-**
Trading net profit/(loss)
**2,618**
**-**
Contribution from trading activities
**2,618**
**-**|**Total**
Total
**Funds**
Funds
**2022**
2021
**£**
£
**424,829**
337,396
**1,540,042**
1,888,859|
|---|---|---|
|||**1,964,871**
2,226,255|
|||**Total**
Total
**Funds**
Funds
**2022**
2021
**£**
£
**9,756**
6,866
**-**
24,722|
|||**9,756**
31,588|
|||**Total**
Total
**Funds**
Funds
**2022**
2021
**£**
£
**11,262**
7,028
**276**
2,055|
|||**11,538**
9,083|
|||**Total**
Total
**2022**
2021
**£**
£
**26,939**
38,709
**(24,321)**
(35,661)|
||**2,618**
**-**|**2,618**
3,048|
||**2,618**
**-**|**2,618**
3,048|
All trading activities income received in the year were unrestricted.
28
## **SCLERODERMA & RAYNAUD’S UK NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 MARCH 2022**
|**9.**
**EXPENDITURE**
**2022**
Group
**Expenditure on Raising Funds**
Cost of Raising Funds
**Expenditure on Trading Activities**
Retail (100% trading sub)
**Expenditure on Charitable Activities**
Research
Services to Members
Support Costs Allocated
**Total Expenditure**
**Prior Year**
Group
**Expenditure on Raising Funds**
Cost of Raising Funds
**Expenditure on Trading Activities**
Retail (100% trading sub)
**Expenditure on Charitable Activities**
Research
Services to Members
Support Costs Allocated
**Total Expenditure**|**Other**
**Support**
**Staff**
**Direct**
**Cost**
**Total**
**Grants**
**Costs**
**Costs**
**Allocation**
**2022**
**£**
**£**
**£**
**£**
**£**
(note 10)
(note 11)
-
109,751
55,562
44,750
210,063
-
2,818
21,503
-
24,321
280,688
119,541
59,037
49,176
508,442
-
209,628
82,576
85,076
377,280
-
35,591
143,411
(179,002)
-|
|---|---|
||280,688
477,329
362,089
-
1,120,106|
||Other
Support
Staff
Direct
Cost
Total
Grants
Costs
Costs
Allocations
2021
£
£
£
£
£
(note 10
(note 11)
-
110,385
28,574
24,118
163,077
-
2,690
32,971
-
35,661
487,327
90,058
42,989
41,125
661,499
-
209,218
51,976
95,540
356,734
-
37,596
123,187
(160,783)
-|
||487,327
449,947
279,697
- 1,216,971|
29
**SCLERODERMA & RAYNAUD’S UK NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 MARCH 2022**
## **10. GRANTS**
## **Analysis of grant expenditure**
Group & Charity
|University College London
Royal United Hospitals Bath NHS
D4T4 Solutions Plc
SCIDEX Program
Objective Assessment of Scleroderma
Skin Rissues (OASIS)
MRC Fellowship
University of Hull
Royal Free London NHS Foundation
Trust
RUHB01
Royal Brompton Hospital
Friedrich-Alexander University
University of Nottingham
General|**2022**
2021
**£**
£
**-**
29,579
**-**
50,188
**-**
27,943
**-**
119,998
**-**
117,939
**22,376**
136,401
**36,769**
-
**19,000**
-
**45,544**
-
**33,257**
-
**97,600**
-
**16,428**
-
**9,314**
5,279|
|---|---|
||**280,688**
487,327|
Of the total grants payable £280,688 relates to grants payable to institutions (2021: £482,048). During the prior year a number of grants were confirmed as completed and the outstanding balances were written back.
## **Grant commitments are as follows:**
Group & Charity
|Grant commitments at 1 April
Awards made during year
Payments made during the year
Grants retracted
Grant commitments at 31 March|**2022**
2021
**£**
£
**612,447**
323,372
**280,688**
487,327
**(191,352)**
(198,252)
**-**
-
**701,783**
612,447|
|---|---|
30
## **SCLERODERMA & RAYNAUD’S UK NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 MARCH 2022**
## **11. GOVERNANCE AND SUPPORT COSTS**
|Group & Charity
Support & Governance:
Support staff costs
Human resources
Facilities
Finance & legal
Office costs
Governance staff costs
Governance other costs
**Total support and governance costs**|**2022**
2021
**£**
£
**28,494**
30,569
**4,130**
3,322
**46,576**
34,156
**28,029**
32,693
**51,532**
44,069
**7,097**
7,027
**13,144**
8,947|
|---|---|
||**179,002**
160,783|
## **12. STAFF COSTS**
|**AFF COSTS**||
|---|---|
|Staff costs were as follows:
Wages and salaries
Social security costs
Pension
Temporary staff|**Group**
**Charity**
**2022**
2021
**2022**
2021
**£**
£
**£**
£
**397,174**
366,067
**394,357**
363,378
**37,835**
36,260
**37,835**
36,260
**11,568**
9,475
**11,568**
9,475
**30,752**
38,145
**30,752**
38,145|
||**477,329**
449,947
**474,512**
447,258|
The average number of employees during the year was as follows:
||**2022**|**2021**|
|---|---|---|
||No.|No.|
|Staff|11|11|
|Employees receiving remuneration|amounting to more than £60,000 were as||
||**2022**|**2021**|
|Remuneration|No.|No.|
|£70,000 - £79,999|1|1|
Employees receiving remuneration amounting to more than £60,000 were as follows:
During the year there were no redundancies (2021: £nil).
The key management personnel of the charity comprise the trustees and the senior management team as listed on page 37. The total amount of employee benefits (including employer pension contributions) received by key management personnel for their services to SRUK was £256,299 (2021: £229,763).
## **TRUSTEES**
None of the trustees (or any person connected with them) received any remuneration during the current or preceding year, and total expenses reimbursed to trustees was £nil (2021 - £nil).
31
**SCLERODERMA & RAYNAUD’S UK NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 MARCH 2022**
## **13. INTANGIBLE FIXED ASSETS**
## **14.**
|**Group & Charity**
**Cost**
At 1 April 2021
Additions
At 31 March 2022
**Depreciation**
At 1 April 2021
Depreciation charge
At 31 March 2022
**Net Book Value**
At 31 March 2021
At 31 March 2022
**TANGIBLE FIXED ASSETS**
**Group & Charity**
**Cost**
At 1 April 2021
Additions
At 31 March 2022
**Depreciation**
At 1 April 2021
Depreciation charge
At 31 March 2022
**Net Book Value**
At 31 March 2021
At 31 March 2022|**Website**
**Total**
**£**
**£**
9,336
**9,336**
-
**-**|
|---|---|
||9,336
**9,336**|
||1,815
**1,815**
3,112
**3,112**|
||4,927
**4,927**|
||7,521
**7,521**|
||4,409
**4,409**|
||**IT Equipment**
**Total**
**£**
**£**
-
**-**
1,379
**1,379**|
||1,379
**1,379**|
||-
-
138
**138**|
||138
**138**|
||-
-|
||1,241
**1,241**|
32
## **SCLERODERMA & RAYNAUD’S UK NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 MARCH 2022**
|**15.**
**FIXED ASSET INVESTMENTS**
**Group & Charity**
**Investments**
**Market value of quoted investments at 1 April 2021**
Additions
Disposal proceeds
Net investment gains
**Market value of quoted investments at 31 March 2022**
Cash on deposit
**Market value at 31 March 2022**
**Historic cost at 31 March 2022**
**Accumulated unrealised (loss)/gain**
**Historic Cost Gains**
Net investment (loss)/gain
Movement on unrealised (loss)/gain
**Realised (losses)/gains based on historic cost**|**2022**
2021
**Total**
Total
**£**
£
**547,103**
442,765
**179,995**
349,790
**(181,807)**
(322,971)
**6,613**
77,519|
|---|---|
||**551,904**
547,103
**28,982**
23,572|
||**580,886**
570,675|
||**554,214**
538,800|
||**26,672**
31,875|
||**6,613**
77,520
**(26,013)**
(68,993)|
||**(19,400)**
8,527|
All the fixed asset investments are held in the UK. Investments have been valued at market value at the balance sheet date.
|**Investments are represented by:**
Cash
Equity
Fixed interest
Alternatives
Overseas
Total
**16.**
**STOCK**
Stock
**17.**
**DEBTORS**
**Due within one year**
Trade debtors
Amounts owed by group entities
Accrued income
Other debtors
Prepayments
Taxes|Group
**2022**
2021
**£**
£
**7,113**
9,420|**2022**
2021
**£**
£
**28,982**
23,572
**120,632**
128,954
**127,284**
149,984
**104,629**
81,790
**199,359**
186,375
**580,886**
570,675
Charity
**2022**
2021
**£**
£
**-**
-
**Charity**
**2022**
2021
**£**
£
**64,805**
19,950
**35,384**
40,964
**1,416,395**
952,563
**495**
776
**44,262**
13,335
**5,592 **
2,130|
|---|---|---|
||**Group**
**2022**
2021
**£**
£
**64,757**
24,284
**-**
-
**1,416,395**
952,564
**14,838**
11,104
**44,271**
13,344
**3,409**
2,164||
||**1,543,670**
1,003,460|**1,566,933**
1,029,718|
33
## **SCLERODERMA & RAYNAUD’S UK NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 MARCH 2022**
|**18.**
**CREDITORS**
Trade creditors
Other creditors
Taxes and social security
Accruals
Grant commitments|**Group**
**Charity**
**2022**
2021
**2022**
2021
**£**
£
**£**
£
**56,284**
17,370
**57,232**
27,127
**1,794**
-
**8,918**
-
**15,806**
11,349
**15,806**
11,349
**54,326**
32,193
**45,663**
22,649
**701,783**
612,447
**701,783**
612,447|
|---|---|
||**829,993**
673,359
**829,402**
673,572|
## **19. UNRESTRICTED FUNDS**
|**GROUP**
Designated
General
**CHARITY**
Designated
General
**Prior Year**
**GROUP**
Designated
General
Revaluation
**CHARITY**
Designated
General
Revaluation|**Funds**
**brought**
**forward**
**Income**
**Expenditure**
**including**
**gains and**
**losses**
**Transfer**
**Funds**
**carried**
**forward**
**£**
**£**
**£**
**£**
**£**
2,781,781
-
(280,688)
-
2,501,093
1,609,296
2,013,104
(832,805)
-
2,789,595|
|---|---|
||4,391,077
2,013,104
(1,113,493)
-
**5,290,688**|
||**Funds**
**brought**
**forward**
**Income**
**Expenditure**
**including**
**gains and**
**losses**
**Transfer**
**Funds**
**carried**
**forward**
**£**
**£**
**£**
**£**
**£**
2,781,781
-
(280,688)
-
2,501,093
1,608,727
1,986,165
(808,485)
-
2,786,407|
||4,390,508
1,986,165
(1,089,173)
-
**5,287,500**|
||**Funds**
**brought**
**forward**
**Income**
**Expenditure**
**including**
**gains and**
**losses**
**Transfer**
**Funds**
**carried**
**forward**
**£**
**£**
**£**
**£**
**£**
2,069,108
-
(487,327)
1,200,000
2,781,781
1,047,419
2,305,635
(652,124)
(1,091,634)
1,609,296
108,366
-
-
(108,366)
-|
||3,224,893
2,305,635
(1,139,451)
-
4,391,077|
||**Funds**
**brought**
**forward**
**Income**
**Expenditure**
**including**
**gains and**
**losses**
**Transfer**
**Funds**
**carried**
**forward**
**£**
**£**
**£**
**£**
**£**
2,069,108
-
(487,327)
1,200,000
2,781,781
1,049,897
2,269,616
(619,152)
(1,091,634)
1,608,727
108,366
-
-
(108,366)
-|
||3,227,371
2,269,616
(1,106,479)
-
4,390,508|
34
**SCLERODERMA & RAYNAUD’S UK NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 MARCH 2022**
## **20. ANALYSIS OF NET ASSETS**
|**GROUP**
Intangible and tangible fixed assets
Investments
Current assets
Current liabilities
**CHARITY**
Intangible and tangible fixed assets
Investments
Current assets
Current liabilities
**Prior Year**
**GROUP**
Tangible fixed assets
Investments
Current assets
Current liabilities
**CHARITY**
Tangible fixed assets
Investments
Current assets
Current liabilities|Unrestricted
Designated
Restricted
**Total**
£
£
£
**£**
5,650
-
-
**5,650**
580,886
-
-
**580,886**
3,033,052
2,501,093
-
**5,534,145**
(829,993)
-
-
**(829,993)**|
|---|---|
||2,789,595
2,501,093
-
**5,290,688**|
||Unrestricted
Designated
Restricted
**Total**
£
£
£
**£**
5,650
-
-
**5,650**
580,886
-
-
**580,886**
3,029,273
2,501,093
-
**5,530,366**
(829,402)
-
-
**(829,402)**|
||2,786,407
2,501,093
-
**5,287,500**|
||Unrestricted
Designated
Restricted
**Total**
£
£
£
**£**
7,521
-
-
**7,521**
570,675
-
-
**570,675**
1,704,459
2,781,781
-
**4,486,240**
(673,359)
-
-
**(673,359)**|
||1,609,296
2,781,781
-
**4,391,077**|
||Unrestricted
Designated
Restricted
**Total**
£
£
£
**£**
7,521
-
-
**7,521**
570,675
-
-
**570,675**
1,704,103
2,781,781
-
**4,485,884**
(673,572)
-
-
**(673,572)**|
||1,608,727
2,781,781
-
**4,390,508**|
## **21. RELATED PARTIES**
During the year staff recharges of £2,818 (2021 - £2,689) were made to RSA Trading Company Limited; as at 31 March 2022 SRUK are due £35,384 (2021 - £40,964) from RSA Trading Company Limited.
All transactions were carried out at arm’s length. There were no other related party transactions in year.
35
**SCLERODERMA & RAYNAUD’S UK NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 MARCH 2022**
## **22. PRINCIPAL SUBSIDARIES**
**Company Name Country Percentage Description** RSA Trading Company Limited United 100% Sale of products to help with the Kingdom medical conditions of Raynaud's and Scleroderma
The subsidiary was registered in England and Wales with registered number 07869668.
|**Financial review:**
Net assets
Income
Expenditure
Profit
**ERATING LEASES**
**Group and Charity**
**Operating Leases – Buildings**
Amounts due:
< 1 year
2-5 years
>5 years
Total|**2022**
**2021**
**£**
**£**
3,205
589|
|---|---|
||26,939
38,709
(24,321)
(35,661)|
||2,618
3,048|
||**2022**
**2021**
**£**
**£**
**14,180**
14,180
**-**
-
**-**
-|
||**14,180**
14,180|
## **23. OPERATING LEASES**
36
**Legal and Administrative Information**
## **WHO WE ARE:**
## **Trustees:**
Christopher Coombe Kenneth Hicks Susan Hoare Professor Jeremy Pearson Helena Rozga Professor David G.I. Scott Jitinder Saini Jason Bryant Professor Allan Lawrie Kellie Scott Dorian Haskard Elliot Dunster Gerard Donohue
Chief Executive Officer: Senior Management Team:
(Retired 10th December 2021) (Retired 13th May 2021) (Retired 25th May 2021) (Retired 25th May 2021) (Retired 25th May 2021) (Retired 25th May 2021)
(Appointed 13th May 2021) (Appointed 14th May 2021) (Appointed 26th May 2021) (Appointed 12 July 2021)
Sue Farrington David Atkinson, Gemma Cornwell, Emma Blamont
## **Principal Bankers:**
NatWest Bank 1 Upper Market Square Hanley Stoke on Trent ST11NS
CAF Bank Limited 25 Kings Hill Avenue Kings Hill West Malling Kent ME19 4JQ
## **Solicitors:**
Clyde & Co Beaufort House 15 St Botolph St Spitalfields London EC3A 7NJ
## **Auditors:**
haysmacintyre LLP 10 Queen St Place London EC4R 1AG
37