**Improving Care, Transforming Diagnosis and Influencing Change.** Our Impact in 2021 Axial SpA is an inflammatory disease of the spine and joints. Inflammation, where muscles attach to the bones, causes extreme pain. If left untreated, it can permanently fuse bones together. **www.nass.co.uk** P2 ## We don’t. We are the National Axial Spondyloarthritis Society (NASS) and we transform the diagnosis and care of people living with axial SpA. It’s an invisible and misdiagnosed condition, often leaving people feeling powerless, in increasing pain and extreme exhaustion. So, we campaign policy makers for early diagnosis, treatment and better services. We work with the NHS to get axial SpA identified and diagnosed quickly, and are determined that everyone receives effective care. We make sure people with axial SpA can access the latest information and the support they need to tackle living with this condition. And we build active communities, online and through our local branches across the UK. We’re with you all the way. **Join us. Help us raise our voices and raise funds. Axial SpA works silently. We don’t.** **www.nass.co.uk** P3 ## **Raising our voices, changing lives** **The COVID19 pandemic continued to cast a shadow over us all in 2021 and we began to face a new challenge, a cost-of-living crisis.** The NHS remained under pressure and people found getting access to their rheumatology team increasingly challenging. We were determined to ensure that people received the support they needed to understand how to live well with axial spondyloarthritis. We were also determined to lead change to end the unacceptable 8.5 year delay to diagnosis and drive improvements in care. With demand for support from our Helpline remaining at unprecedented levels, we provided clarity in a confusing world and ensured that people got timely and accurate information about the vaccine roll-out. We innovated, piloting our first supported selfmanagement programme in partnership with rheumatology teams. We showed that online patient education sessions give people the skills and knowledge they need to live with the daily challenges of axial SpA. We will continue to develop the programme and are confident that we’ll get funding to launch in full during the coming year. We also launched our ground-breaking _Act on Axial SpA_ programme in June 2021, aiming to establish a Gold Standard time to diagnosis of just one year. Our public awareness campaign reached people with unexplained back pain and encouraged them to take steps towards a diagnosis. Our priority over the next few years is to continue to work with health care professionals to ensure that the right patient pathways, diagnostic support and education is in place to ensure early diagnosis. Our campaigning work continued to gain momentum. We are particularly grateful to the All-Party Parliamentary Group (APPG) on Axial Spondyloarthritis for shining a light on the importance of mental health support and the role of primary care in the diagnosis of axial SpA. We successfully lobbied to ensure that time to diagnosis of axial spondyloarthritis has a much stronger focus in the National Early Inflammatory Arthritis Audit. This will give us invaluable data and a deeper understanding of the causes of diagnostic delay. We’re proud of our achievements in 2021 but we couldn’t have done it without our committed networks of branches volunteers, healthcare professionals, donors and funders, Parliamentarians and policy-makers, who were unfailing in their support. We want to thank everyone for helping us to deliver more than ever for people with axial SpA during an unprecedented time. **Raj Mahapatra** Chair **Dr Dale Webb** CEO Our impact in 2021 P4 ## **Life with axial spondyloarthritis** people live with axial SpA in the UK of people suffer with depression Average number of years to diagnosis of axial SpA The average age of onset www.nass.co.uk P5 ## **Our impact** Responses to requests for advice and support Total reach of our media coverage views of My AS My Life, Facebook Live sessions Estimated value of disability benefits we helped people claim Total number of axial SpA **2,249** online symptom checker completions Number of NASS members Our impact in 2021 P6 ## **Our influence** Launched a ground-breaking campaign to end the 8.5 year delay to diagnosis Built political pressure for improved diagnosis in primary care Campaigned to get hydrotherapy the attention it deserves Called for improvements in mental health support for people with axial SpA Ensured axial SpA is a larger part of the National Early Inflammatory Arthritis Audit Continued to deliver the largest UK programme to improve the quality of care for axial SpA patients www.nass.co.uk P7 ## **By your side in 2021** The COVID19 pandemic continued to overshadow us in 2021 and the need for our support was greater than ever. When lockdowns ended, people remained concerned about stepping outside. And with the NHS under increasing pressure, many people experienced longer waiting times for vital healthcare appointments. “I get loads of support both emotionally and physically from NASS, I don’t know what I would do without it. Instead of scrolling through social media in the long lockdown evenings, I have been watching live sessions (or recordings) on so many AS bits and pieces, Yoga, self-care, relaxation, AS and psoriasis (biggie for me!)” NASS Supporter ## **Providing clarity in a changing world** As the COVID19 vaccine was rolled out and the UK was under lockdown for the early part of the year, we provided up-to-date information when people needed it most. We worked hard to understand the impact of the virus, the vaccines and the treatments for people living with axial SpA. We ensured our website was kept up-to-date and provided vital information at a time when official information could be confusing. The COVID19 vaccine pages of our website were visited 27,542 times. We also continued to provide our guides to rheumatology departments and to individuals with more than 16,000 guides being sent out over the year. ## **Our Helpline providing a lifeline** Our Helpline team are here to listen, understand and provide advice and practical support to anyone affected by axial SpA. With people struggling to get in contact with their rheumatology department and the COVID19 pandemic still causing disruption, people needed our help and support more than ever. Calls to our Helpline rose to an all-time high and we responded to over 7,500 requests for advice and support, a third more than in 2020. To do so, we sustained the extended Helpline opening hours that we established in 2020. Along with information and advice on COVID19, we worked to support people who had questions about how to best manage their axial SpA. As more people started to experience greater financial pressure because of the pandemic, we were there helping them get the benefits they are entitled to. We wrote over 200 letters in support of disability benefits claims, resulting in benefits awards totalling more than an estimated £1,000,000. We also wrote letters to employers, to housing departments and to support Blue Badge parking applications. Our impact in 2021 P8 ## **Helping people live well with axial SpA, wherever they are** In 2021, we continued our innovative _My AS, My Life programme_ which empowers people to overcome the challenges of living with axial SpA. We ran 33 sessions through Facebook Live, which were designed to help people understand how to live well and self-manage their condition. These sessions were viewed over 82,000 times. Our _My AS, My Life_ website pages continued to be popular, with 10,376 visitors using resources including videos, blogs and exercise sheets. ## **Enabling people to overcome daily challenges** “Thank you so much! It was a really enjoyable session. I haven’t been prioritising my health recently and it has spurred me on to get back on track with exercising.” Session participant, November 2021 We’re determined to enable people to thrive with axial SpA and developed an online supported self-management programme to help people develop the skills and knowledge they need to manage daily challenges. We piloted the programme during the first five months of 2021. Thanks to a grant from the Postcode Neighbourhood Trust, we ran 10 online sessions and established a case for running a full programme in the future. The results from the pilot showed the programme gives people with axial SpA the information and support they need to manage their condition, helps them build connections in their local area and feel less isolated. It also helps rheumatology departments provide more patient education for people who are struggling to access routine appointments. We will continue to develop the programme in 2022. www.nass.co.uk P9 ## **Campaigning to transform care and diagnosis** With people finding it harder to access NHS services and the pandemic causing significant disruption, we did more than ever to ensure that parliamentarians and policy makers heard the voice of people with axial SpA. ## **Calling for improvements in mental health services** Axial SpA has a significant impact on people’s mental health, as well as physical health. Indeed, up to 59% of people with the condition report having poor mental health. We were acutely aware that the pandemic and lockdown had put more pressure on people’s mental health and in April, the All-Party Parliamentary Group (APPG) on Axial Spondyloarthritis met to look at the issue. We were grateful to NASS Trustee, Paul Curry, for sharing a very emotional and personal story about the impact living with axial SpA has on his own mental health. The meeting shone a light on research that shows the emotional impact of living with axial SpA, steps that have been taken in Newcastle to ensure people have access to mental health services and approaches to improving the management of long-term conditions. Sue Brown from the Arthritis and Musculoskeletal Alliance shared its view on how mental health services could be improved for people with MSK conditions. ## **Improving diagnosis and referral in primary care** Lack of awareness of axial SpA in primary care is one barrier to the faster diagnosis of the condition. The seventh meeting of the APPG explored this area and highlighted the main challenges faced by GPs and secondary care professionals in recognising and diagnosing axial SpA, the role of first contact practitioners and the NHS England Best MSK Health programme and how it’s supporting improved outcomes for those affected by axial SpA. Dr Dale Webb, our CEO, also talked about the _Act on the Axial SpA_ campaign and our programme to introduce a Gold Standard time to diagnosis of just one year. ## **Ensuring hydrotherapy gets the recognition it deserves** We are determined that hydrotherapy is recognised as a vital treatment for people with axial SpA. In 2021, we established a new alliance to promote aquatic physiotherapy and hydrotherapy for a range of conditions. Standing together gives us a strong voice. The group includes professional bodies for physiotherapy and aquatic therapy, Swim England, as well as our fellow patient organisations. Our impact in 2021 P10 ## **Campaigning for hydrotherapy services to re-open** Too many people are missing out on vital hydrotherapy because pools in some parts of the country have remained closed. To help keep up the pressure for pools to reopen following the COVID19 pandemic, Tom Randall MP asked a question in the House of Commons. This led to Dale Webb meeting with Health Minister Ed Agar and the Department of Health to discuss the issue in more detail. ## **Influencing change** Our work with the National Early Inflammatory Arthritis Audit ensured that axial spondyloarthritis has a stronger focus in the audit. Data will be collected on people’s journey to diagnosis, giving us invaluable evidence on the causes of diagnostic delays that will influence our _Act on Axial SpA campaign._ We helped improve treatment options for people with axial SpA by providing evidence for two National Institute for Health and Care Excellence (NICE) technology appraisals which led to two new treatments being approved for non-radiographic axial SpA and ankylosing spondylitis. We worked hard to influence policy to ensure that axial SpA gets the attention it deserves. We helped shape the new axial SpA patient pathway, which is being developed as part of NHS England’s Best MSK Health Programme. The pathway will be shared with the new Integrated Care Systems in England and will influence how they develop their local pathways. www.nass.co.uk P11 ## **Ending the delay to diagnosis** In June 2021 we launched our ground-breaking _Act on Axial SpA programme_ to tackle the unacceptable 8.5 year delay to diagnosis of axial spondyloarthritis and introduce the world’s first Gold Standard time to diagnosis of one year. ## **Building consensus** Over the next four years, we will work closely with people living with axial SpA, primary and community care, secondary care, professional bodies, commissioners, Parliamentarians and policy-makers, to reduce the time to diagnosis. Our first step was to build strong foundations for the programme by developing it in consultation with people with axial SpA and healthcare professionals. We used the insights we gathered to refine the campaign strategy and develop a new language and visual identity for the campaign. ## **Increasing public awareness** Lack of public awareness of axial SpA and its symptoms contributes to the delay to diagnosis. According to our research, 91% of people say they haven’t heard of the condition and eight out of 10 people are unable to identify the three main symptoms. Our first step was to launch a public awareness campaign and a new website, **www.actonaxialspa.com** . It provides the most comprehensive hub of information for healthcare professionals and people who think they may have the condition, and hosts an easy-to-use symptom checker. The campaign targets people aged 40 and under who are experiencing lower-back pain. In the first year, we showed that by telling emotionally compelling and relatable stories about axial SpA, we can motivate people to find out more about the condition and use our online symptoms checker. ## **Making progress in 2021** Our focus for the first year was testing the public awareness campaign. By the end of the year, social media content had touched people 1.2m times, we secured 14 pieces of media coverage, 16,000 people visited our campaign website and 2,249 people had completed the symptom checker. ## **Stepping into 2022** During 2022 we will work closely with primary and secondary care professionals , including launching a _Champions in Primary Care_ programme and developing a local pilot to test data-led innovative approaches to driving up referrals to rheumatology. We will also launch ground-breaking research on the full economic cost of the 8.5 year delay to diagnosis, to support our influencing work. We are grateful to UCB for fully funding the programme and to Norfolk & Norwich NHS Foundation Trust and Royal United Hospital Bath NHS Foundation Trust for their support. **www.actonaxialspa.com** Our impact in 2021 P12 “More than eight years is too long to wait for a diagnosis but we can only tackle this delay by working together. NASS is not only increasing public awareness but leading a community of healthcare professionals who are committed to this movement for change. A movement that will make a life changing difference to thousands of people.” **Raj Sengupta** Consultant Rheumatologist www.nass.co.uk P13 ## **Improving axial SpA care** We’re determined to improve axial SpA care. Established in 2019, _Aspiring to Excellence_ encourages and recognises service improvement in axial SpA care. The programme is a strategic partnership between NASS, BRITSpA, the NHS Transformation Unit, and sponsors AbbVie, Biogen, Lilly, Novartis and UCB. ## **Driving improvement** The programme provides tailored support that helps rheumatology teams drive improvements in their departments. Teams from across the UK are taking part and exploring novel approaches to care to inform, encourage and support national changes in axial SpA services. Six rheumatology departments joined the programme in 2019 and five more in 2021. ## **Resilience in the face of Covid19** Against a backdrop of increasing pressures on the NHS, the teams demonstrated an impressive ability to stay engaged and implement many of their planned improvement initiatives. They have shown significant adaptability, resilience and teamwork and, turned adversity into opportunity – harnessing digital solutions and innovative new ways of working – in rapid response to the pandemic. - The Newcastle rheumatology team trained community–based physiotherapists, leading to improved rheumatology referrals in order to reduce the time to diagnosis. - The Southampton team implemented an inflammatory back pain (IBP) pathway from primary care in order to reduce time to presentation in rheumatology. They also introduced an MRI spine inflammatory back pain protocol to reduce variation in imaging. - The Leeds team established a tertiary referral service which has significantly improved time to diagnosis. - The Berkshire team implemented mental health interventions for patients which have reduced the percentage of patients with abnormal Hospital Anxiety and Depression Scale scores. - The Fife team established a pathway for physiotherapy self–referral and reduced physiotherapy ‘Did Not Attend’ rates. - The Sheffield team used audit data to make the business case for an extended scope practitioner. ## “The Aspiring to Excellence programme has given us structure and focus to build on our work to achieve the best standard of care in axial SpA. We have embedded new practices into our axial SpA patient pathway that have both spread and are sustainable. This will ensure there is continuous improvement in our service long after we have completed the programme for the benefit of our patients.” **Dr Antoni Chan** Consultant Rheumatologist Our impact in 2021 P14 ## **Building a community** People tell us that living with axial SpA can be isolating, so through branches and NASS membership we build connected communities that help people feel less alone. ## **Branches are our lifeblood** During 2021, there were 85 NASS branches run entirely by volunteers. Against a backdrop of Covid lockdowns, many continued to meet online, giving hundreds of people a much needed opportunity to take part in essential physiotherapy-led exercise and connect with friends. As things started to open up, our branches worked tirelessly to get back to in-person sessions. We are grateful for the resilience they showed during an unprecedented time. ## **Connecting through membership** Our members tell us that by joining NASS they feel less alone and isolated with axial SpA, and part of a community that understands life with the condition. We have seen a steady growth in the number of NASS members, and by the end of 2021 we had 4089 members. We also held our first hybrid Members’ Day, which was attended by 60 people in person and 200 online. Attendees spent a day diving into sessions on the latest treatments for axial SpA and also new ideas on how to manage the condition at home. “NASS has been invaluable and enabled me to connect with other people with axial SpA.” **Richard Shire** NASS Member ## **NASS Voices** [It was] a very informative day with lots of new information on issues I need to address. Great venue. It was lovely to meet new people.” In 2021, over eighty people attended events in Chester and Newcastle to learn more about axial SpA from NASS, rheumatologists, physiotherapists and occupational therapists, and to meet others affected by the condition. Over 90% of attendees came away from NASS Voices events, feeling more confident about managing their condition. NASS Voices Newcastle was funded by the National Lottery Community Fund, which is funded by National Lottery players while NASS Voices Chester was funded by The Ursula Keyes Trust. www.nass.co.uk P15 ## **Raising funds, raising voices** We want to say a special thank you to everyone who helped us raise vital funds and stepped forward to tell their story to increase awareness of axial SpA. You helped us raise our voices and change lives. ## **Raising essential funds in a tough year** We receive no statutory funding and rely on the generosity of our fundraisers to do our amazing work. Thank you to everyone who donated or took part in fundraising, despite the pandemic. Thanks to you, we continued to run our helpline, support people with benefits applications, provide free resources such as guides and videos and run Facebook Live sessions. You helped power us through the pandemic and we couldn’t have made a life changing difference to so many people without your help. “I decided that I wanted to combine my love of swimming to raise awareness about axial SpA, and raise money to support NASS, who have been such amazing support for me over the years.” **Darren Fletcher swam 10 miles** and raised £1,459 for NASS. ## **Raising our voices in the media** We are doing more work than ever to ensure axial SpA gets the attention it deserves and to tell the story of life with the condition in the media and on social media During 2021, our media relations work led to nearly 349 million opportunities to see or hear our campaign messages. Coverage included BBC Radio 2 Jeremy Vine Show, The Dundee Courier, The Daily Express, The Daily Mirror, The Daily Mail, Men’s Fitness Magazine, The Sun Online, Chat Magazine and Irish News. We have also changed our approach to social media and seen a significant growth in the number of followers. During 2021, the total reach of our Facebook page was 1,148,046, a growth of 469% compared to 2020. Our Facebook followers grew by 59%. We’re grateful to everyone who stepped forward to tell their story, but particularly grateful to Singer-Songwriter, Talia Dean, and DJ and Entrepreneur, Mark Wilkinson. Our impact in 2021 P16 **We would like to thank the Charitable Trusts that supported us in 2021** - **The Alice Ellen Cooper Dean Charitable Foundation** - **The Baker Charitable Trust** - **The David Gibbons Foundation** - **The Eveson Charitable Trust** - **The Edward Cadbury Charitable Trust** - **The Edward Gostling Foundation** - **The G C Gibson Charitable Trust** - **The Ganzoni Charitable Trust** - **The Hospital Saturday Fund** - **The Hugh Fraser Foundation** - **The Hamilton Wallace Trust** - **John Coates Charitable Trust** - **The James Weir Foundation** - **James Tudor Foundation** - **The Khayami Foundation** - **Lord Leverhulme’s Charitable Trust** - **Lottery Awards for All** - **The Mary Homfray Charitable Trust** - **Masonic Charitable Foundation** - **The Norman Family Charitable Trust** - **Northern Pharmacies Limited Trust Fund** - **Summers & May Charitable Settlement** - **Sir Jules Thorn Charitable Trust** - **The Simon Gibson Charitable Trust** - **The Thousandth Man-Richard Burns Charitable Trust** - **The Ursula Keyes Trust** - **The Weinstock Fund** - **Postcode Neighbourhood Trust** **We would like to thank the companies that supported us in 2021** www.nass.co.uk P17 ## **Our year in numbers** **Investments and other income** £194,991 (£77,744 restricted; £117,247 unrestricted) **Other trading activities** £116,088 (£2,876 restricted; £113,212 unrestricted) **Donations and legacies** £871,389 (£478,342 restricted; £393,047 unrestricted) ## **Our expenditure** **Cost of raising funds** £126,457 (£106,356 Direct costs; £20,101 allocation of overheads) **Governance** £23,134 **Charitable activities** £988,511 (£412,830 restricted; £575,681 unrestricted) ## **A breakdown of how every £1 was spent in 2021** **87% was on charitable activities** **11% was on raising funds** **2% was on governance** Our impact in 2021 P18 ## We don’t. www.nass.co.uk P19 **National Axial Spondyloarthritis Society** Ground Floor Unit 6 Cambridge Court 210 Shepherds Bush Road London W6 7NJ **Helpline & General Enquiries** 020 8741 1515 **Membership & Events** 020 3011 5133 **Email:** admin@nass.co.uk **Website:** www.nass.co.uk Twitter: **@NASSexercise** Facebook: **@NationalAxialSpondyloarthritisSociety** Instagram: **@NASS_exercise** NASS is a registered charity in England and Wales (1183175) and Scotland (SC049746) Charity number: 1183175 NATIONAL AXIAL SPONDYLOARTHRITIS SOCIETY TRUSTEES. REPORT AND FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2021 NATIONAL AXIAL SPONDYLOARTHRITIS SOCIETY CONTENTS Page Reference and Administrative Details of the Charity. its Trustees and Advisers Trustees. Report 2-13 Independent Auditors. Report on the Financial Statements 14-17 statement of Financial Activities 18 Balanco Sheot 19 Statement of Cash Flows 20 Notes to the Flnanclal Ststements 21-40 NATIONAL AXIAL SPONDYLOARTHRITIS SOCIETY REFERENCE AND ADMINISTRATIVE DETAILS OF THE CHARITY, ITS TRUSTEES AND ADVISERS FOR THE YEAR ENDED 31 DECEMBER 2021 Trustees Rajeevendra Kumar Mahapatra, Chair Daniel McFadane, Trustee Dr Antoni Tuck Yin Chan, Trustee Nicholas Clarke, Trustee Paul Curry, Trustee Gillian Eames, Trustee IRe-elected 12 June 2021} Poppy Hocken, Trustee IRe*lecled 12 June 20211 Claire Jeffries, Trustee Dr Jaqueline Harris, Trustee Dr Lesley Kay, Trustee (Elected 12 June 20211 Monika Mayhew, Trustee (Retired 12 June 20211 Hannah Murphy, Trustee (Elected 12 June 20211 Patricia O'callaghan Peter Emesl Proctor Townsend (Retired 12 June 20211 Charity registered number 1183175 Principal office 172 King street London W6 OQU Independent auditors BKL Audit LLP Chartered Accounlanls 35 Ballards Lane London N3 1XW Page 1 NATIONAL AXIAL SPONDYLOARTHRITIS SOCIETY TRUSTEES. REPORT FOR THE YEAR ENDED 31 DECEMBER 2021 The Trustees present their annual report together with the audited financial statements of the Charity INASSI for the year 1 January 2021 10 31 December 2021. NASS is a Charitable Incorporated Organisalion. The financial statements have been prepared in 8ecord8nce with the accounting policies set out in note 1 to the financial statements and comply with the Charity's Igoverning doeumenll, the Charities Act 2011, the Charities and Trustee Investment IScot18ndl Act 2005, the Charities Accounts Iseollandl Regulations 2006 las amended) and Accounting and Reporting by Ch8rilies." S18tement of Recommended Practice applicable lo charities preparing their accounts in aecordance with the Financial Reporting S18nd8rd applicable in the UK and Republic of Ireland IFRS 1021 leffeclive 1 January 20191" 1. Structure, govemance and management a. Constitution NASS is a Charitable Incorporated Org8nisation and was registered as a charity in April 2019. The rules and gulalions of the CIO are set out in its Conslitulion, adopted by the Board of Trustees on 14 September 2019 and approved by the Charity Commission. b. Methods of appointment or election of Trustees The goveming body of NASS is 8 Board of Trustees consisting of elected Trustees. Only members of NASS may be appointed as Trustees. The maximum number of charity trustees that may be appointed to NASS in ils first year of incorporab'on is thirteen. Thereafter the maximum number of charity trustees that may be appointed to NASS is twelve. At every annual general meeting of the members of NASS, one third of the charity Iruslees shall retire from office. The charity trustees lo retire by rotation shall be those who have been longest in office since their last appointment or re8ppoinlment. If any trustees were last appointed or reappointed on the same day those lo retire shall lunless they otherwise agree among themselves) be determined by lot. The vacancies so arising may be filled by the decision of the members at the annual general meeting, any vacancies not filled at the annual general meeting may be filled by the charity trustees. Such persons shall retire al the conclusion of the next annual general meeting after the date of his or her appoinlmenl, and shall not be counted for the purpose of determining which of the charity trustees is lo retire by rotation al that meeting. The members or the charity trustees may at any time decide lo appoint 8 new charity trustee, whether in place of a charity trustee who has retired or been removed in accordance with clause 15 (Retirement and removal of charity trusteesl, or as an additional charity trustee, provided that the limit specified on the number of charity trustees would not 8S 8 result be exceeded. The Chair and Treasurer are approved by the Board and selected from among the trustee group. Their term of office as Chair and Treasurer is consistent with their term of office as 2 trustee. In advance of each AGM members of NASS are widely encouraged to nominate a fellow member as Trustee. On 8PF)ointment, new trustees are asked lo spend a half day in the NASS central office for a briefing with the Chief Execub've and s18ff lo understand how the society works. Form81 training is provided when ￿quIred. Page 2 NATIONAL AXIAL SPONDYLOARTHRITIS SOCIETY TRUSTEES. REPORT {CONTINUED} FOR THE YEAR ENDED 31 DECEMBER 2021 1. Structure, govemance and management leontinuedl c. Organisational structure and deeision-making policies The Trustees meet quartedy to ￿VIeW matters of policy and lo make appropriate judgements, directions and decisions on CIO issues. Trustees delegate 8Uthority some matters 10 8 Finance and General Purposes Committee consisting of the Chair, the Treasurer, up lo three 8PFiointed Trustees and the Chief Executive. This Committee meets four times per year. NASS also has a Medical Advisory Board which acts in advisory capacity only. Day to day management of NASS is undertaken by the Chief Executive and his I her staff. The Iruslèes consider the Chief Executive as comprising the key m8nagemenl personnel of the charity in charge of directing and controlling the charity and running and operating the charity on a day lo day basis. The pay of the Chief Executive is reviewed annually by the trustees. d. Principal risks and uncertainties The Trustees have adopted appropriate policies necessary to limit or mitigate the risks faced by NASS. The principal risks are". Loss of funds.. Funds are held with various first tier banks on a short term basis and as a result there is little risk of loss in the short lo medium term. Loss of income.. NASS seeks lo broaden and expand its income from all SoUr￿s. Nevertheless, NASS is dependent upon voluntary income, both al branch level and at national level, and aims to increase ils membership locally and nationally. Loss of reputation." NASS seeks at all limes lo maintain its independent viewpoint. Assistance received from external bodies, such as members of the pharmaceutical industry, is strictly controlled so as to ensure that independence is not compromised. Loss of stsff.. NASS has a Reward Strategy to ensure that the charity is able lo recruit and retain high quality staff. It also has a sel of HR policies to provide the appropriate framing for all HR matters. NASS has a safeguarding policy and set of procedures which is applicable to beneficiaries, staff, trustees and volunteers. Staff are trained and NASS branches have a training resource. The safeguarding policy and prO￿dureS is reviewed on an annual basis e. Pay pollcy for key management personnel The pay of the staff and Chief Executive is reviewed annually by the trustees. f. Volunteers NASS is heavily dependent on 250 volunteer members who provide support at branch level. Volunteer members are unpaid and NASS'S accounts do not reflect the value to NASS of the many hours work provided free to NASS. The Trustees are fully conscious of this value and recognise that the work of NASS would be considerably curtailed without the support provided by volunteer members. Our 85 NASS branches work lo offer regular, physiotherapisl-led group exercise for anyone living with axial SpA. Our NASS branches are sub-committees of NASS and are led by a committee usually comprising a Chair, Treasurer and Secretsry. We support our branches with a suite of resources, regular promotion of their aclivilies, online meetings and having a named member of staff who is available Monday to Friday to help with any problems or issues. Page 3 NATIONAL AXIAL SPONDYLOARTHRITIS SOCIETY TRUSTEES. REPORT {CONTINUED} FOR THE YEAR ENDED 31 DECEMBER 2021 1. Structure, govemance and management leontinuedl g. Organisational relationships NASS is a member of the following organisations". Arthritis and Musculoskeletal Alliance IARMAI Axial Spondyloarthrilis International Federation IASIF} Association of Chief Executives of Voluntary Organisalions IACEVOI Charity Finance Group Charity Comms Fundraising Regulator National Voices National Council for Voluntary Organization INCVOI Helpline Partnership NASS also works in close partnerships with other charities and organisations as part of the Disability Benefits Consortium and Prescription Charge Coalition. 2. ObJe¢tlves and strategy a. Objectlves NASS'S vision is as follows.. 'The future we want to create is one where every person with axial spondyloarthrilis (axial SpAI has timely and effective diagnosis, treatment and care, is empowered to make informed health choices and feels part of a supports've community." It seeks to do this by". providing information to the general public about axial SpA, and advice lo people living with the condition, their families, carers, service-providers and employers advocating lo ensure that every person has timely and effective diagnosis, treatment and care of the condition funding and disseminating researeh and analysis to 8dvanee scientific understanding of the condition and ils effective treatment. In setting objectives and planning for aclivilies, the Trustees have given due consideration to general guidance published by the Charity Commission relating lo public benefit, including the guidance 'Public benefit.. running a harity IPB21'. NASS provides public benefit by.. working with statutory bodies and others that provide for the treatment and welfare of people affected by axial SpA educating people affected by axial SpA, as well as healthcare professionals and the public, on the problems related lo it putting people affected by axial SpA In contact with expert advisers promoting research into the management and cure of axial SpA and its causes disseminating the results of research related to axial SpA. In so doing NASS improves the lives of those affected by axial SpA, particularly in relation to their ability to contribute positively to the prosperity of their communities and the country as a whole. Page 4 NATIONAL AXIAL SPONDYLOARTHRITIS SOCIETY TRUSTEES. REPORT {CONTINUED} FOR THE YEAR ENDED 31 DECEMBER 2021 2. Objectives and strategy {eontinued} b. Strategy for achieving objectives In accordance with the provisions set out in its Constitution, the Trustees have adopted the following stmtegy for the period 2020- 2024 to meet NASS'S principal objects. To ensure that people with axial SpA receive timely diagnosis, effective treatment and care Maintain pressure at national level lo ensure effective and widespread implementation of the NICE Guideline and Quality Standard for axial SpA Continue to run an All Paty Parliamentary Group for axial spondyloarthrilis Undertake Parliamentary work in the devolved nations Develop and publish a Gold Standard time lo diagnosis route map Commission research on the economic consequences of a delay lo diagnosis Coale impactful ways to engage primary care professionals and those in appropriate secondary care seNices to ensure that they identify and refer patients who may have axial SpA Form an alliance lo protect NHS hydrotherapy services Develop a primary care clinical champions programme Continue to work in partnership with professional bodies Support rheumatology and other services lo test approaches to improving diagnosis and treatment and spread the learning across the UK Expand the Aspiring to Excellence healthcare improvement programme Ensure that patient values and needs underpin NHS Servi￿ delivery Disseminate learning from Aspiring to Excellence Raise awareness among those working in emergency care and NHS 111 To empower, Inform and Insplre people affected by axlal SpA Ensure that everyone affected by axial SpA has access lo personalised support and the best information about the condition Extend personalised SUPF)Ort through our Helpline service, and reliable and user-friendly information resources for everyone affected by axial SpA Promote physical activity, and support and motivate people to exercise Support and develop the NASS branch nebNork to continue to ensure people can access regular group, physiolherapy led exercise sessions Support and motivate people lo confidently and safely exercise independently Ensure that everyone affected by axial SpA IASI has the skills, Confiden￿ and knowledge they need lo manage their condition optimally Develop a face-to-face self-management pilot programme and roll out if SLJccessful Consider an online version of 8 self-management programme for NASS members To foster a connected and supportive community, raising axial SpA awareness everyday. everywhere Conduct public awareness campaigns using various methods and channels lo try and increase knowledge. Chiefly this activity will include.. Using case studies of people living with axial SpA lo generate media coverage Encouraging our members and supporters lo become advocates for NASS and campaigners for improvements in axial care Online and social media campaigns to create interest and inform the public Using related national and internation81 awareness days Create an active community of NASS members and supporters who work together Make moo use of online tools such as Facebook Live for st￿aming events, conversations and debates, to encourage participation and engagement Page 5 NATIONAL AXIAL SPONDYLOARTHRITIS SOCIETY TRUSTEES. REPORT {CONTINUED} FOR THE YEAR ENDED 31 DECEMBER 2021 2. Objectives and strategy {eontinued} Increase our online supporter numbers through social media promotion, listening, and 'surprise and delight, outreach lo potential supporters Encourage members and supporters lo lake up fundraising activity for NASS, whether large-scale challenge events or activity such as raffles and coffee mornings Ensure that people know what NASS stands for, the changes that are seeking to bring about and how we operate Offer thought leadership and op-ed pieces from the CEO, Chair and other key colleagues to professional and trade outlets, and also for mainstream health outlets Use social media listening techniques to reach out to people talking about axial SpA, making them aware of NASS and ils resources Develop annual membership campaigns to increase the number of members and membership revenue Seek opportunities to outreach through extemal events outside of the sector at which NASS can contribute and have visibility. 3. Achievements and performance a. Activities undertaken to achieve objectives Ensure people with axial SpA receive timely diagnosis. effective treatment and care We continued lo work with Parliamentsrians through our All P8rty Parliamentary Group IAPPGI on axial SpA to provide national oversight of the implementation of the NICE Guideline on the diagnosis and management of spondyloarthrilis. We held meetings to explore the importance of mental health support and the role of primary care in the diagnosis of axial SpA Following a national consultation prO￿5s, we launched a route map lo achieve a Gold Standard lime lo diagnosis of one year. We call it Act on Axial SpA We laLJnched a new website, www.actonaxials a.com which provides the most comprehensive hub of information for healthcare professionals and people who think they may have the condition, and hosts an easy-lo-use symptom checker We estsblished a new alliance to promote aquatic physiotherapy and hydrotherapy for a range of conditions We commissioned research lo identify the full economic costs of delayed diagnosis and another study to identify the needs and values of people with axial SpA about their diagnosis, treatment and care Our service improvement programme Aspiring lo Ex￿llen￿ welcomed a second cohort of rheumatology departments. All 11 departments undertook planned projects, supported by our partner the NHS Transformation Unil. Empower. infomi and inspire people affected by axial SpA We continued to run extended Helpline opening hours lo deal with unprecedented demand as a consequence of the COVID19 pandemic We wrote over 200 letters in support of disability benefits claims, as well as letters to employers, to housing departments and to support Blue Badge parking applications We continued our innovative My AS My Life programme and ran 33 sessions through Fa￿book Live, to help people understand how to live well with axial SpA and self-manage their condition We piloted a self-management programme with 10 rheumatology departments We provided COVID19 information through our website and Helpline serviee We sent 16,000 of our Guides to rheumatOl￿Y departments and individuals We continued to support NASS branches lo maintain appropriate activities during the pandemic. Page 6 NATIONAL AXIAL SPONDYLOARTHRITIS SOCIETY TRUSTEES. REPORT {CONTINUED} FOR THE YEAR ENDED 31 DECEMBER 2021 Foster a connected and supportive community, raising axial SpA awareness every dayy everywhere We launched the first phase of a national awareness raising campaign about the condition, ils symptoms and the need for early presentation at primary care We developed the Act on Axial SpA campaign website and a symptom checker. We held our annual Members Day which was in hybrid form We held two NASS Voices regional events for people in Newcastle and Chester We developed a new and dislinclive NASS brand, based on research with our community We partne￿d with singer-songwriter Talia Dean and DJ and Entrepreneur Mark Wilkinson, as part of our awareness campaign. We continued lo lesl new approaches to help grow our social media audience, such as a myth busting campaign and quiz and a Christmas campaign. We continued to test paid for social media advertising, which enabled us to reach people outside our current audience. b. Achievements and performance We supported 50'k more people in 2021 through our Helpline and Information Service than in 2019.. 7,524 in total We helped people claim in excess of £1,000,000 of disability benefits Our self-management videos were watched 82,000 times and there were 10,000 visitors to our My AS My Lifg website pages The Covid-19 vaccine pages of our website were visited 27,542 limes The evaluation of our self-management programme showed that il gives people with axial SpA the information and support they need lo manage their condition and helps them build connections in their local area and feel less isolated. 11 also helps rheumatology departments provide more patient education for people who are struggling to access routine appointments The total reach of our media coverage was 349 million The total reach of our Facebook page was 1,148,046, a growth of 4690/0 compared to 2020. Our Facebook followers grew by 590/0 2,000 people completed our new axial SpA online symptom checker Our membership numbers rose by 11°/o from 3,685 10 4089 The Chair of the APPG asked a question on hydrotherapy pools in the House of Commons. This led lo a meeting with Health Minister Ed Agar and the Department of Health lo discuss the issue in more detail We helped shape the new axial SpA patient pathway, developed as part of NHS England's Best MSK Health Programme We successfully lobbied to ensure that axial SpA is a larger part of the National Early Inflammatory Arthrits's Audit A review of Aspiring to Excellence showed that all of the first cohort of rheumatology departments had achieved service Improvements.. The Newcasde rheumatOl￿Y team trained community-based physiolherapist5, leading to improved rheumatology referrals in order to reduce the time to diagnosis The Southampton team implemented an inflammatory back pain pathway from primary Care in order to reduce time to presentation in rheumatology. They also introduced an MRI spine inflammatory back pain protocol to reduce variation in imaging The Leeds team established a tertiary referral service which has significantly improved time to diagnosis The Berkshire team implemented mental health interventions for patients which have reduced the percentage of patients with abnormal Hospital Anxiety and Depression Scale scores The Fife team established a pathway for physiolherapy self-referral and redU￿d physiotherapy Did Not Attend rates The Sheffield team used audit to m8ke the business case for an extended scope practitioner. Page 7 NATIONAL AXIAL SPONDYLOARTHRITIS SOCIETY TRUSTEES. REPORT {CONTINUED} FOR THE YEAR ENDED 31 DECEMBER 2021 c. Fundraising activities and income generation NASS receives no slatulory funding and relies on income from ch8rit8ble trusts, voluntary fundraising and donations and pharmaceutical companies to do its life-changing work. In 2021, we updated our fundraising strategy to diversify our income streams and reviewed our approach to marketing fundraising and stewardship. This included the development of a new community fundraising product, Go Orange for AS, lo integrate with the new NASS brand. NASS is grateful to everyone who donated money or undertook a fundraising activity on our behalf in 2021". 55 people look part in third-paty events such as the London Marathon and Royal Parks Half marathon 185 people took part in community fundraising or organised their own fundraising activity 106 people gave a regular donation via direct debit We are hugely grateful to everyone who gave a cash gift in 2021. We ran fundraising appeals, continued lo ask people to support us by giving a one-off cash donation and sign-up lo give monthly by direct debit. Gifts in Wills provide sustainable future income for NASS and are a wonderful way for people to help the next generation live well with axial SpA. In 2021 we developed a new legacy marketing brochure. By the end of the year our totsl number of legacy pledgers had grown to 59. NASS also receives grants from charitable trusts and from the pharmaceutical industry. Developing the Trust pipeline and increasing the number of applications was a priority for us in 2021. During the year NASS received.. Unrestricted grants from charitable trusts tolalling £44,700 With special thanks lo.. The Edward Gostling Foundation The John Coates Charitable Tmst The Simon Gibson Charitable Trust Thg Khayami Foundation Lord Leverhulm& s Charitable Twst Hamilton Wallace Trust The Hospital Saturday Fund The M2ry Homfray Ch2rit2ble Trust Miss Summers and MNSS May's Ch8rit8ble Settlement The Weinslock Fund Sir Jules Thom Charitable Trust Thg Baker Charitable Tmst Th& Edwa￿ Gostling Foundation The Thousandth Man- Richard Burns Charitable Trust The G C Gibson Charitable Trust Reslricled grants from charitable trusts totalling £37,240 With special thanks lo". The Nom)an Family Charitable Tmst Thg Ganzoni Charitable Trust The David Gibbons Foundation Northem Pham7acies Limited Trust Fund The Edward Cadbury Charitable Twst The James Tudor Foundation The James Weir Foundation The Alice Ellen CooperDean Charitable Foundation Page 8 NATIONAL AXIAL SPONDYLOARTHRITIS SOCIETY TRUSTEES. REPORT {CONTINUED} FOR THE YEAR ENDED 31 DECEMBER 2021 Thg Eveson Charitable Trust The Ursula Keyes Trust The Hugh Fraser Foundation Reslricled grants form other organisations totalling £13,834 With speci81 thanks lo". Innovate UK for Good Boost Project £4, 662 Lottery Abydnls forAII forNASS Voices Newcastle £9.172 Restricted Grants from pharmaceutical companies for specific projects totalling £485,331 With special thanks lo.. Abbme Ltd Aspinng lo Excellence £30, 000 UCB Phamia NASS APPG NASS Gold Slandartl Time to Diagnosis AspiiFng lo Excellence £16,000 £287, 681 £33, 750 Bio en Idec Ltd Aspiring lo Excellence £30, 000 No￿artiS Pharmaceuticals UK Ltd NASS All Party Pa￿lamentary Group Policy Round Table meeting AspiiFng lo Excellence £16.000 £11, 900 £30, 000 and Com AspiI7ng to Excellence an £30, 000 Unrestricted Grants from phaMla￿ullCa1 companies With special thanks lo.. Jan￿n￿lIa Core funding Ltd £5, 000 d. Subscriptions The charity charges subscriptions lo its members at national level, and those attending NASS branches pay a local subscription fee which funds branch activities. At national level this income1£158,9451 covers the benefits members receive (Forum, access to Members Area, free attendan￿ al Members Dayl and the support and adminislralion of Subscriptions. The charity has approximately 4,100 members al national level and around 1000 attendees per week al branches. The Trustees actively encourage all those with axial SpA lo join the society. Page 9 NATIONAL AXIAL SPONDYLOARTHRITIS SOCIETY TRUSTEES. REPORT {CONTINUED} FOR THE YEAR ENDED 31 DECEMBER 2021 4. Financial review a. Going coneem After making appropriate enquiries, the Trustees have 8 reasonable expectation that the Charity has adequate resources to eontinue in operational existence for the foreseeable futu￿. For this reason, they continue lo adopt the going eoncern basis in preparing thè financial stalemenls. Further details regarding the adoption of the going COn￿M basis Can be found in the aceounling policies. b. Reserves policy Free reserves, defined as the b81anee of unrestricted funds less tangible fixed 8ssetS, at the end of reporting period amount to £342,84312020 - £432,212). The remaining funds are eomprised of two properties (valued al £700,000) from which NASS derives rental income, other tangible assets of £6,619, investments of £54,000, branch funds of £298,771, other restricted grants tol811ing £319,442, and one statue gifted by Dame Elisabelh Frink. Unrestricted cash reserves represent six months operating eosts. At p￿sent NASS does not have an endowment fund and therefore income musl be raised each year from voluntary SoU￿S and total income is likely to flucluale from year to year. We aim to hold 6-9 months free reserves. This working capit81 protects the continuity of our core work, that is, work not funded through restricted income. Core work includes our information and support service, awareness ising, eampaigning and policy influencing, and the work of our branches across the UK. We have chosen 8 reserves level of 6-9 months having considered the level of prediclabilitylunreliability in our income sources and the extent to which our cost base is flexible or committed. Our largest income sources (legacies and grant funding from pharmaceutical companiesl come at irregular intervals, and the majority of our costs are committed, principally in the form of the staff who deliver our charitable objectives. In 2021 our unreslricled cash reserves fell below our policy minimum. This was a Consequen￿ of two factors". the imp8Ct of the Covid pandemic on community and events fundraising and a lower than average legacy income. We will Continue to monitor this in 2022 and take action if necessary. c. Investment policy and perfomiance NASS has adopted a policy of m8ximising liquidity and therefore funds available have been held in interest bearing bank accounts or equivalent short-term deposits al varying rates of interest placed with first tier banks. NASS'S property investments comprise two residential apartments which are rented out on shorthold assured len8ncies lo generate income for NASS. NASS'S investments also include one statuette gifted by Dame Elisabelh Frink. All investments are carried at market value. d. Expenditure on: Ensure people with axial SpA receive timely diagnosis, effective treatment and care The charity incurred tol81 costs of £467,348 12020 £443,953) lon education activities with healthcare profession81s, research, campaigning and running the Secretariat for the All Party Parliamentary Group on axial SpA. This included support costs of £52,94512020 - £76,004). This reflects the eontinuing emphasis placed by the Trustees on Campaigning for wider recognition of the condition, speedier diagnosis and better Page 10 NATIONAL AXIAL SPONDYLOARTHRITIS SOCIETY TRUSTEES. REPORT {CONTINUED} FOR THE YEAR ENDED 31 DECEMBER 2021 4. Financial review Icontinuedl e. Expenditure on: Empower, inform and inspire people affected by axial SpA The Charity incurred lot81 eosts of £247,627 12020 £172,208) on education and support activities whieh included support costs of £48,61212020 - £44,151). f. Expenditure on: Foster a connected and supportive communityy raising axial SpA awareness every day, everywhere The Charity incurred total central costs of £273,536 12020 - £334,1721 on awareness raising and community building activities which included support costs of £61,98212020 - £58,070). g. Summary of financial perfomiance As a whole, the Society reported an excess of income over expenditure of £44,36612020 - deficit of £293,905), mainly as a result of grants tolalling £499,165 received in the year. A surplus of £41,769 12020 deficit of £329,530) arose centrally, a surplus of £2,597 12020 surplus of £35,625) arose al branch level and surplusldeficil of £143,53512020 - £82,242) arose on other restricted funds. S. Plans for future periods Our four priority areas for 2022 are". Reducing diTagnostic delay.. we will Introduce a primary care clinical champions programme Introduce a secondary care education programme Publish research on the full economic costs of diagnostic delay Publish a report on the work of the 11 Aspiring lo Excellen￿ sites lo redu￿ delay Launch an integrated pilot in one area of the UK lo lest the impact of all four solutions in consort Introduce a third cohort of Aspiring to Excellence that will focus on delay and all three cohorts will work together, framed around the Gold Stsndard solub'ons Launch a new series of publications called Spotlight that draws attention to new peer reviewed journal articles about delay and best practi￿ examples of work to improve lime to diagnosis Review the current provision of axial SpA training to radiologists Create new collateral lo promote the BRITSpA MRI guidelines. Supporting the NHS to improve axial SpA care.. we will Launch a third cohort of Aspiring to EX￿llen Capacilate rheumatology departments lo provide supported self-managemenl through co-designed sessions and an e-library of resources Launch a podcast series aimed at healthcare professionals showing how the use of quality improvement tools can improve patient care Continue lo support the NHS Best MSK Health Collaborative,. and work with BSR to encourage clinicians to enter axial SpA patients into the National Early Inflammatory Arthritis Audit Establish a programme of outreach to rheumatology departments to engage with our work and share our learning resources. Page11 NATIONAL AXIAL SPONDYLOARTHRITIS SOCIETY TRUSTEES. REPORT {CONTINUED} FOR THE YEAR ENDED 31 DECEMBER 2021 S. Plans for future periods {eontinued} suppO￿.n9 people affected by axiTal SpA (including self-m8nagementJ.' we will Seek to maintsin our information and support service at current levels Continue developing free to access self-management resources Develop an online self-management education programme for pats'enls with hospitals across the UK Develop an e-learning platfomi lo support independent learning Increasing awareness of axial SpA and of NASS.. we will Continue to implement the Act on Axial SpA public awareness raising campaign across online media and PR but more sharply focused on communicating axial SpA symptoms, using the SPINE acronym Launch the findings of the research into the full economic costs of diagnostic delay, making this our major 'news' moment in 2022 Test a local awareness campaign, lo understand whether using a mix of marketing, communications and PR and corporate partnership can increase appropriate consultations al primary care and referrals from primary care through lo rheumatology. Plan an int￿rated campaign - Unseen- for delivery in 2023. statement of Trustees. responsibilities The Trustees are responsible for preparing the Trustees, Report and the financial statements in accordance with applicable law and United Kingdom Accounting Standards Iunited Kingdom Generally AC￿pIed Accounting Practice). The law applicable lo charities in England & Wales requires the Trustees to prepare financial statements for each financial year which give a true and fair view of the slate of affairs of the Charity and of ils incoming resources and application of resour￿$, including its income and expenditure, for that period. In preparing these financial statements, the Trustees are required lo.. Select suitable accounting policies and then apply them consistently., Observe the methods and principles of the Charities SORP IFRS 1021., Make judgments and accounting estimates that are reasonable and prudent., Stale whether applicable UK Awounting Standards IFRS 1021 have been followed, subject to any material departLJres disclosed and explained in the financial stalemenls., Prepare the financial statements on the going concern basis unless it is inappropriate to presume that the Charity will continue in business. The Trustees are responsible for keeping adequate accounting records that are sufficient to show and explain the Charity's transactions and disclose with reasonable accuracy at any time the financial position of the Charity and enable them lo ensure that the financial statements comply with the Charities Act 2011, the Charity IAccounts and Reports) Regulations 2008 and the provisions of the Trust deed. They are also responsible for safeguarding the assets of the Charity and hence for taking reasonable steps for the prevention and detection of fraud and other irregularities. Page 12 NATIONAL AXIAL SPONDYLOARTHRITIS SOCIETY TRUSTEES. REPORT {CONTINUED} FOR THE YEAR ENDED 31 DECEMBER 2021 Diselosure of infomiation to auditors Each of the persons who are Trustees al the time when this Trustees, Report is approved has confirmed that". So far as that Trustee is aware, there is no relevant audit information of which the charity's auditors are unaware, and That Trustee has taken all the steps that ought lo have been taken as a Trustee in order lo be aware of any relevant audit information and to establish that the charity's auditors are aware of that information. Audltors During the year, Bery Kaprow Lewis LLP acted as auditor to the charity until 31 March 2022. On 31 March 2022, Berg Kaprow Lewis LLP transferred its audit business to a new LLP, BKL Audit LLP. The Iruslees consented lo Irealing the appointment of Berg Kaprow Lewis LLP as extending to BKL Audit LLP with effect from 1 April 2022. The auditors, BKL Audit LLP, have indicated their willingness lo continue in office. The designated Trustees will propose a motion reappointing the auditors at a meeting of the Trustees. Approved by order of the members of the board of Trustees and signed on their behalf by.. endra Kumar Mahapatra Dale. 24 September 2022 Page 13 NATIONAL AXIAL SPONDYLOARTHRITIS SOCIETY INDEPENDENT AUDITORS. REPORT TO THE MEMBERS OF NATIONAL AXIAL SPONDYLOARTHRITIS SOCIETY Opinion We have audited the financial statements of National Axial Spondyloarthrilis Society (the 'charity'l for the year ended 31 December 2021 which comprise the Slalemenl of Financial Aclivilies, the Balance Sheet, the statement of Cash Flows and the related notes, including a summary of significant accounting policies. The financial reporting framewort( 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 Praclicel. The financial statements have been prepared in accordance with Accounting and Reporting by Charities preparing their accounts in accordance with the Financial Reporting Standards applicable in the UK and Republic of Ireland IFRS 1021 in preference lo the Accounting and Reporting by Charities.. Statement of Recommended Practice issued on 1 April 2005 which is referred lo in the extant regulations bul has been withdrawn. This has been done in order for the accounts to provide a true and fair view in accordance with the Generally Accepted Accounting Practice effective for reporting periods beginning on or after 1 January 2015. In our opinion the financial statements.. give a true and fair view of the stste of the charity's affairs as at 31 December 2021 and of its incoming resources and application of resources for the year then ended., have been properfy prepared in accordan￿ 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 conducted our audit in accordanTr with International Standards on Auditing IUKI IISAS IUKII and applicable law. Our responsibilities under those standards are further described in the Auditors, responsibilities for the audit of the financial statements section of our report. We are independent of the charity in accordance with the ethical requirements that are relevant to our audit of the financial statements in the United Kingdom, including the Financial Reporting Council's Ethical Standard, and we have fulfilled our other ethical responsibilities in accordance with these requirements. We believe that the audit eviden￿ we have obtained is sufficient and appropriate to provide a basis for our opinion. Conclusions relating to going concorn In auditing the financial slalements, 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 doubl on the charity's ability lo continue as a going concem for a period of at least I￿e1ve months trom when the financial statements are authorised for issue. Our responsibilities and the responsibilities of the Trustees wth respect lo going COn￿M are described in the relevant sections of this report. Page 14 NATIONAL AXIAL SPONDYLOARTHRITIS SOCIETY INDEPENDENT AUDITORS. REPORT TO THE MEMBERS OF NATIONAL AXIAL SPONDYLOARTHRITIS SOCIETY ICONTINUEDI other information The other information comprises the information included in the Annual Report other than the financial slalements and our Auditors. Report thereon. The Trustees are responsible for the other information contained within the Annual Report. Our opinion on the financial slalements does not cover the other information and, except lo the extent otherwise explicitly staled in our report, we do not express any form of assurance conclusion Ihereon. Our responsibility is lo read the other information and, in doing so, consider whether the other information is materially inconsistent with the financial statements or our knowledge obtained in the course of the audit, or otherwise appears lo be materially misslaled. If we identify such material inconsistencies or apparent material misslatemenls, we are required lo determine whether this gives rise to a material misstatement in the financial slalements themselves. If, based on the wort( we have performed, we conclude that there is a material misstatement of this other information, we are required lo report that fact. We have nothing lo report in this regard. Matters on which are required to report by exception We have nothing lo report in respect of the following matters where the Charities {Accounts and Reports) Regulations 2008 requires us to report to you if, in our opinion.. the infomialion given in the Trustees, Report is inconsislenl in any material respect with the financial slalements., or sufficient accounting records have not been kept,. or the 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. Responsibilitigs of trustegs As explained more fully in the Trustees. Responsibilities Statement, the Trustees are responsible for the preparation of the financial statements which give a true and fair view, and for such Internal control as the Trustees determine is ne￿SSary lo enable the preparation of financial stslements that are free from material misstatement, whether due lo fraud or error. In preparing the financial statements, the Trustees are responsible for assessing the charity's ability to continue as a going concern, disclosing, as applicable, matters related to going con￿rn and using the going COn￿M basis of accounting unless the Trustees either intend lo Iiquidale the charity or to ￿ase operations, or have no realistic alternative bul to do so. Page 15 NATIONAL AXIAL SPONDYLOARTHRITIS SOCIETY INDEPENDENT AUDITORS. REPORT TO THE MEMBERS OF NATIONAL AXIAL SPONDYLOARTHRITIS SOCIETY ICONTINUEDI Auditors. responsibilities for the audit of the financial statements 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 Ihereunder. Our objectives are lo obtain reasonable assurance about whether the financial statements as a whole are free from material misslatemenl, whether due to fraud or error, and lo issue an Auditors. Report that includes our opinion. Reasonable assurance is a high level of assurance, bul is not a guarantee that an audit conducted in accordance with ISAS IUKI will always delecl a material misslatemenl 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 lo influence the economic decisions of users taken on the basis of these financial stalemenls. Irregularities, including fraud, are InStan￿S of non-compliance with laws and regulations. We design procedures in line with our responsibilities, outlined above, lo delect material misstalemenls in respect of irregularities, including fraud. The exlenl lo which our prO￿dureS are capable of delecling irregularities, including fraud is detailed below.. Enquiring of management around actual and potential litigation and claims., Reviewing board meeting minutes of meetings of those charged with governance., Reviewing financial slalemenl disclosures and testing lo supporting documentation to assess Complian￿ with applicable laws and regulations., Performing audit work over the risk of management override of controls, including lesling of journal entries and other adjuslmenls for appropriateness, evaluating the business rationale of significant transactions outside the normal course of business and reviewing accounting eslimales for bias. 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 slatemenls, as we will be less likely lo 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 al.. www.frc.or .uklauditorsres onsibililies. This description forms part of our Auditors, Report. Page 16 NATIONAL AXIAL SPONDYLOARTHRITIS SOCIETY INDEPENDENT AUDITORS. REPORT TO THE MEMBERS OF NATIONAL AXIAL SPONDYLOARTHRITIS SOCIETY ICONTINUEDI Use of our report This report is made solely lo the charity's Iruslees, as a body, in accordance with Part 4 of the Charities (Accounts and Reports) Regulations 2008. Our audit work has been undertaken so that we might stale lo the charity's trustees those mallers we are required lo stale lo them in an Auditors, Report and for no other purpose. To the fullest extent permilled by law, we do not accept or assume responsibility to anyone other than the charity and its trustees, as a body, for our audit work, for this report, or for the opinions we have formed. SEZ 4M//l Zzf BKL Audit LLP Chartered Accountants Statutory Auditor 35 Ballards Lane London N3 1XW Dale.. 3010912022 BKL Audit LLP are eligible lo act as auditors in terms of section 1212 of the Companies Act 2006. Page 17 NATIONAL AXIAL SPONDYLOARTHRITIS SOCIETY STATEMENT OF FINANCIAL ACTIVITIES FOR THE YEAR ENDED 31 DECEMBER 2021 Restricted Unrestricted funds funds 2021 2021 Total funds 2021 Total funds 2020 Note Income from: Donations and legacies other trading activities Other income 478,342 2,876 77,744 393,047 113,212 117,247 871,389 116,088 194,991 573. 744 62,696 193, 123 Total income 558,962 623,506 1,182,468 829,563 Exponditure on: Raising funds Charitsble activities 126,457 598,815 126,457 1,011,645 151, 114 972,354 412,830 Total expenditure 412,830 725.272 1,138,102 1, 123,468 Net Incomel{expendlture) before net gainsl{lossesl on investments Nel gainslllossesl on investments 146,132 {101,7661 24,900 44,366 24,900 (293,905) (43, 740) Net incomel{expenditure) Transfers between funds 146,132 18,3131 176,8661 8,313 69,266 (337,045) 18 Net movement in funds 137,819 168.5531 69,266 (337,045) Reconciliation of funds.. Total funds brought forward Nel movement in funds 480,394 137,819 1.172,015 168,5531 1.652,409 69,266 1,989,454 (337,045) Total funds carrigd forward 618,213 1,103,462 1,721,675 1,652,409 The Ststemenl of Financial Activities includes all gains and losses recognised in the year. The notes on pages 21 to 40 form part of these financial statements. Page 18 NATIONAL AXIAL SPONDYLOARTHRITIS SOCIETY BALANCE SHEET AS AT 31 DECEMBER 2021 2021 2020 Note Fixed assets Tangible assets Investments Investment propety 6,619 54,000 700,000 10,703 29,700 700,000 15 14 760,619 739,803 Current assets Debtors 16 115,061 894,766 128,079 988,429 Cash al bank and in hand 1,009,827 1,716,508 Creditors.. amounts falling due within one year 17 {48,771) (203,902J Net current assets 1,721,675 1,652,409 Total assets less current liabilities 1,721,675 1,652,409 Total net assets 1.721,675 7,652,409 Charity fund$ Reslricled funds Unrestricted funds 18 18 618.213 1.103,462 480,394 1, 172,015 Total funds 1,721,675 1,652,409 The financial statements were approved and authorised for issue by the Trustees and signed on their behalf by.. Rajeevendra Kumar Mahapatra Dale.. 24 September 2022 The notes on pages 21 to 40 form part of these financial statements. Page 19 NATIONAL AXIAL SPONDYLOARTHRITIS SOCIETY STATEMENT OF CASH FLOWS FOR THE YEAR ENDED 31 DECEMBER 2021 2021 2020 Cash flows from operatlng actlvltles Nel cash used in operating activities 1117,374) (216,151) Cash flows from Investlng actlvltles Dividends, interests and rents from investments Proceeds from the sale of tangible fixed assets Purchase of tangible fixed assets Proceeds from sale of investments 25.029 26,434 74,300 (2,230) 28,900 1,318) Net cash provided by investing activities 23.711 67,404 Cash flows from flnanclng actlvltles Net cash provided by financing activities Change in cash and cash equivalents in the year Cash and cash equivalents at the beginning of the year {93,663} 988,429 {148.7471 1, 137, 176 Cash and cash equivalents at the end of the year 894,766 988,429 The notes on pages 21 to 40 form part of these financial statements Page 20 NATIONAL AXIAL SPONDYLOARTHRITIS SOCIETY NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2021 General information National Axial Spondyloarthrilis Society is an organisalion incorporated in the United Kingdom under the Charities Act 2011. The organisalion is a Charitable Incorporated Organisalion, registered in England and Wales and in Scotland. The address of the registered office is 172 King Street, London, W6 OQU. Accounting policies 2.1 Basis of preparation of financial ststements The financial statements have been prepared in accordance with the Charities SORP IFRS 1021 Accounting and Reporting by Charities". Statement of Recommended Practice applicable lo charities preparing their accounts in accordance with the Financial Reporting Standard applicable in the UK and Republic of Ireland IFRS 1021 leffeclive 1 JanLJary 20191, the Financial Reporting Standard applicable In the UK and Republic of Ireland IFRS 1021 and the Charities Act 2011. The financial statements have been prepared to give a 'true and fair, view and have departed from the Charities (Accounts and Reports) Regulations 2008 only to the extent required to provide a 'true and fair, view. This departLJre has involved following the Charities SORP IFRS 1021 PLJblished in October 2019 rather than the Accounting and Reporting by Charities.. Statement of Recommended Practice effective from 1 April 2005 which has since been withdrawn. National Axial Spondyloarthrilis Society meets the definition of a public benefit entity under FRS 102. Assets and liabilities are Inilialty rec￿nISed al historical cost or transaction value unless otherwise stated in the relevant accounting policy. 2.2 Going concern After making appropriate enquiries, the TrLJStees have a reasonable expectation that the Charity has adequate resources lo continue in operational existence for the foreseeable fLJture. For this reason, they continue to adopt the going con￿rn basis In preparing the financial statements. 2.3 Income All income is recognised once the Charity has entillemenl to the income, il is probable that the income will be received and the amount of income receivable can be measured reliably. The rec(4nition of income from legacies is dependent on establishing entitlement, the probability of receipt and the ability to estimate with sufficient accuracy the amount receivable. Evidence of entitlement to a legacy exists when the Charity has sufficient evidence that a gift has been left to them (through knowledge of the existence of a valid will and the death of the benefaclorl and the executor is satisfied that the property in question will not be required to satisfy claims in the estate. Receipt of a legacy musl be recognised when It is probable that it will be received and the fair value of the amount receivable, which will generally be the expected cash amount lo be distributed to the Charity, Can be reliably measured. Grants are included in the Statement of Financial Activities on a receivable basis. The balance of income received for specific purposes bul not expended dLJring the period is shown in the relevant funds on the Balance Sheet. Where income is received in advance of entitlement of receipt, ils recognition is deferred and included in creditors as deferred Income. Where entitlement occurs before income is received, the income is accrLJed. Other income is recognised in the period in which il is receivable and to the extent the goods have been provided or on completion of the service. Page 21 NATIONAL AXIAL SPONDYLOARTHRITIS SOCIETY NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2021 Accounting policies Icontinuedl 2.4 Expenditure Expenditure is recognised once there is a legal or constructive obligation to transfer economic benefit to a third paty, it is probable that a transfer of economic benefits will be required in selllemenl and the amount of the obligation can be measured reliably. Expenditure is classified by aclivily. The costs of each activity are made up of the total of direct costs and shared costs, including support costs involved in undertaking each activity. Direct costs attributable lo a single activity are allocated directly to that activity. Shared costs which contribute to more than one activity and support costs which are not allributable lo a single activity are apportioned belMeen those activities on a basis consislenl with the use of resources. Central staff remuneration is allocated on the basis of lime spent, and depreciation charges allocated on the portion of the asset's use. Expenditure on raising funds includes all expenditure incurred by the Charity to raise funds for ils charitable purposes and includes costs of all fvndraising activities events and non-charitable trading. Expenditure on charitable activities is incurred on diredy undertaking the activities which further the Charity's objectives, as well as any associated support costs. Grants payable are charged in the year when the offer is made except in those cases where the offer is conditional, such grants being recognised as expenditure when the conditions attaching are fulfilled. Grants offered subject to conditions which have not been mel at the year end are noted as a commitment, bul not accrued as expenditure. All expenditure is inclusive of irrecoverable VAT. 2.5 Tangible fixed assets and depreciation Tangible fixed assets costing £NIL or more are capilalised and recognised when future economic benefits are probable and the cost or value of the asset can be measured reliably. Tangible fixed assets are initially recognised at cost. After recognition, under the cost model, tangible fixed assets are measured al cost less accumulated depreciation and any accumulated impairment losses. All costs incurred lo bring a tangible fixed asset into its intended working condition should be included in the measurement of cost. Depreciation is charged so as to allocate the cost of tangible fixed assets less their residual value over their eslimaled useful lives, Depreciation is provided on the following basis.. Office equipment 25Qh Slraighl line basis 2.6 Investments Fixed asset investments are a form of financial instrument and are inilialty recognised al their transaction cost and subsequently measured al fair value at the Balance Sheet dale, unless the value cannot be measured reliably in which case it is measured al cost less impairment. Investment gains and losses, whether realised or unrealised, are combined and presented as 'Gainsl{Lossesl on investments, in the Statement of Financial Activities. Investments held as fixed assets are shown al cost less provision for impairment. Page 22 NATIONAL AXIAL SPONDYLOARTHRITIS SOCIETY NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2021 Accounting policies Icontinuedl 2.7 Debtors Trade and other debtors are recognised al the settlement amount after any trade discount offered. Prepayments are valued al the amount prepaid net of any trade discounts due. 2.8 Cash at bank and in hand 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 dale of acquisition or opening of the deposit or similar account. 2.9 Liabilities and provisions Liabilities are recognised when there is an obligation at the Balan￿ Sheet date as a result of a past event, it is probable that a transfer of economic benefit will be required in selllemenl, and the amount of the selllemenl can be eslimaled reliably. Liabilities are recognised at the amount that the Charity anlicipales il will pay lo settle the debt or the amount il has re￿iVed as advanced payments for the goods or services it musl provide. Provisions are measured at the best estimate of the amounts required lo sellle the obligation. Where the effect of the lime value of money is material, the provision is based on the present value of those amounts, discounted at the pre-tax discount rale that reflects the risks specific to the liability. The unwinding of the discount is recognised in the Statement of Financial Activities as a finance cost. 2.10 Financial instruments The Charity only has financial assets and financial liabilities of a kind that qualify as basic financial instruments. Basic financial instruments are initially recognised at transaction value and subsequently measured al their selllemenl value with the ex￿ptIOn of bank loans which are subsequently measured al amortised cost using the effective interest method. 2.11 Pensions Defined contribution pension plan The Charity operates a defined contribution plan for ils employees. A defined contribution plan is a pension plan under which the Charity pays fixed contributions into a separate entity. on￿ the contributions have been paid the Charity has no further payment obligations. The contributions are recognised as an expense in profil or loss when they fall due. Amounts not paid are shown in accruals as a liability in the Statement of Financial Position. The assets of the plan are held separately from the Charity in independently administered funds. Page 23 NATIONAL AXIAL SPONDYLOARTHRITIS SOCIETY NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2021 Accounting policies Icontinuedl 2.12 Fund accounting General funds are unreslricled 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. Restricted funds are fvnds which are to be used in accordan￿ with specific reslriclions 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 lo the financial statements. Income from donations and legacies Restricted Unrestricted funds funds 2021 2021 Total funds 2021 Donations Legacies Charity grants 40,127 177,534 154,563 60,950 217,661 154,563 499,165 438,215 478,342 393,047 871,389 Restricted Unrestricted funds funds 2020 2020 Tot81 funds 2020 Donations Legacies Charity grants 37,019 148.431 120,567 185.450 120,56T 267,727 267, 727 304. 746 268.998 573. 744 Included with donations are donated services lolalling £nil12020.' £17,240). The charity grants include Phamiaceulical Industry grants of £485,33112020.' £251,450) and other grants of £13,83412020'. £16,277). Page 24 NATIONAL AXIAL SPONDYLOARTHRITIS SOCIETY NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2021 Income from other trading activities Income from fundraising events Restricted Unrestricted funds funds 2021 2021 Total funds 2021 Fundraising events 2,876 113,212 116,088 Restricted Un￿Stricted funds funds 2020 2020 Total funds 2020 Fundraising events 3,715 58,981 62,696 Other incoming resources Restricted Unrestricted funds funds 2021 2021 Total funds 2021 other income 2,884 8,133 25,029 84,085 11.017 25.029 158,945 Investment income Membership subscriptions 74,860 77,744 117,247 194.991 Restricted Unrestricted funds funds 2020 2020 Tot81 funds 2020 Other income Investment income Membership subscriptions 4,237 8.448 26,434 50,214 72.685 26,434 154,004 103, 790 108.02T 85.096 193. 723 Page 25 NATIONAL AXIAL SPONDYLOARTHRITIS SOCIETY NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2021 Expenditure on raising funds Unrestricted funds 2021 Total funds 2021 Raising funds Expenditure on raising donations and legacies staging fundraising events Fundraising for membership General fundraising expenditure Staff remuneration Support costs Depreciation Other staff costs Premises costs Travel expenses IT and communications office costs Conference costs Awountancy Insuran￿, legal & professional Bank charges Sundry expenses 8,571 7,567 2,164 16,682 71,372 8,571 7,567 2,164 16,682 71,372 679 679 4,321 7,700 273 4,321 7,700 273 2,966 855 649 1,606 137 915 2,966 855 649 1.606 137 915 126,457 126.457 Included within expenditure on raising funds for the year are costs allocated to raising funds of £106,356 and supports costs of £20,101. Page 26 NATIONAL AXIAL SPONDYLOARTHRITIS SOCIETY NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2021 Expenditure on raising funds (continued) Icontinuedl Unrestrict8d funds 2020 Total funds 2020 Ralslng funds Gèneral fundraising expenditure Staff remuneration Support costs Depreciation Other staff costs 34,391 83,035 34,391 83.035 806 12,035 10,026 32 4,831 535 806 12,035 10.026 Premises costs Travel expenses IT and communications office costs Conference costs 32 4,831 535 Accountancy Insuran￿, legal & professional Sundry expenses 477 477 4,071 875 4,071 875 151,114 151. 114 Included within expenditure on raising funds for 2020 were costs allocated lo raising funds of £117,426 and supports costs of £33,688. Analysls of grants Grants to Institutions 2021 Total funds 2021 Grants, Every Patient Every Time Grants, A Connected and Supportive Community 45,358 250 45,358 250 45,608 45,608 Page 27 NATIONAL AXIAL SPONDYLOARTHRITIS SOCIETY NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2021 Analysis of grants Icontinuedl Grants to Institutions 2020 Total funds 2020 Grants, Every Patient Every Time Grants, A Connected and Supportive Community 20,192 2,008 20,192 2,008 22,200 22,200 Anatysls of expendlture on charltable actlvltles Summary by fund type Restrlcted Unrestrlcted funds funds 2021 2021 Total funds 2021 Every Patient, Every Time A Connected and Supportive Community Empower, Inform and Inspire Governance costs 281,505 120,919 10,406 185,843 152,617 237,221 23,134 467,348 273,536 247,627 23,134 412,830 598,815 1,011,645 Restricted Unrestricted funds funds 2020 2020 Total funds 2020 Every Patient, Every Time A Connected and Supportive Community Empower, Inform and Inspire Governance costs 214,418 80.219 229,535 253,953 168,224 22,020 443,953 334. 172 3,984 172,208 22,020 298.821 673, 732 972.353 Page 28 NATIONAL AXIAL SPONDYLOARTHRITIS SOCIETY NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2021 Analysis of expenditure by activities Activities undertaken directly 2021 Grant funding of activities 2021 Support costs 2021 Total funds 2021 Every Patient Every Time A Connected and Supportive Community Empower, Inform and Inspire Governance costs 369,045 211,304 199,015 45,358 250 52,945 61,982 48,612 23,134 467,348 273,536 247,627 23,134 779,%4 45,608 186,673 1,011,645 Activities undertaken directly 2020 Grant funding ol activities 2020 Support Gosts 2020 Total funds 2020 Every Patient Every Time A Connected and Supportive Community Empower, Inform and Inspire Governance costs 347,757 274,094 728,057 20,192 2,008 76,004 58,070 44, 151 22,020 443,953 334, 172 172.208 22,020 749,908 22,200 200,245 972,353 Page 29 NATIONAL AXIAL SPONDYLOARTHRITIS SOCIETY NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2021 Analysis of expenditure by activities Icontinuedl Analysis of direct costs Connected Every and Empower. Patient Supportive Infomi and Every Time Community Inspire 2021 2021 2021 Total funds 2021 Staff remuneration Travel expenses Office costs Courier & distribution of materials Literature, brochures & information Hire of venue & facilities Third party technical providers Branches 249,721 5,696 339 92 36,605 22,838 53,754 137,553 104 123,638 1,057 931 15 39,498 15,377 18,499 510,912 6,857 2,167 897 477 1,703 35 77,806 38,250 75,736 67,052 3,483 67,052 369,045 211,304 199,015 779,364 A Connected Every and Patient Supportive Every Time Community 2020 2020 En7power, Infom7 and Inspire 2020 Total funds 2020 Staff remuneration 187,336 5,940 143, 132 155 108,821 356 439,289 6,451 1,871 7,244 90,585 56,378 21,231 8, 742 118,117 Travel expenses Office costs Courier & distribution of materials Literature, brochures & information Treatment by healthca￿ professionals Hire of venue & facilities other branch payments Third paty technical providers 1,603 6,518 26,080 56,378 76,255 8, 742 15,231 268 694 32 57,944 6,561 4,924 52 91,581 11,305 347.757 274.094 728.057 749.908 Page 30 NATIONAL AXIAL SPONDYLOARTHRITIS SOCIETY NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2021 Analysis of expenditure by activities Icontinuedl Analysis of support costs Connected Every and Empower. Patient Supportive Inform and Governance Every Time Community Inspire costs 2021 2021 2021 2021 Total funds 2021 Staff remuneration Depreciation Other staff costs Premises costs Travel expenses IT and Communie8tions Office costs Conference costs Audit fees Accountancy Insurance, legal & professional other support costs Bank charges 5,825 1,905 12,122 21,483 767 8,320 2,568 13,7541 5,825 1,429 9,092 16,201 575 6,241 1,926 1,801 7,489 1,389 8,839 15,751 559 6,068 1,872 1,751 6,658 25,797 4,723 30,053 53,435 2,019 20,629 6,366 12021 7,200 4,512 8,163 23,016 962 118 7,200 1,820 1,501 1,327 3,284 3,378 13,858 291 9,158 388 283 52,945 61,982 48,612 23,134 186,673 Page 31 NATIONAL AXIAL SPONDYLOARTHRITIS SOCIETY NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2021 Analysis of expenditure by activities Icontinuedl Analysis of support costs Icontinuedl A Connected Every and Patient Supportivg Every Time Community 2020 2020 Empower, Infom? and Govemancg Inspire Gosts 2020 2020 Total funds 2020 Staff remuneration Depreciation Other staff costs Premises costs Travel expenses IT and communications Office costs Conference costs Audit fees 21,426 1,819 5. 723 22,620 73 10,900 1,974 1,207 16,370 1,390 4,373 17,282 56 8,328 1,509 922 12,446 1,057 3.324 73,140 43 6,332 3,093 53,335 4,266 13.420 53,042 172 25,560 4.830 2,830 6,540 2,523 24.200 701 6,540 Accountancy Insurance, legal & professional other governance costs 1,076 9,186 822 625 7,018 5,336 2,660 9,727 9,72T 76,004 58,070 44,157 22,020 200,245 10. Auditors. remuneration The auditors. remuneration amounts to an auditor fee of £7,200 (2020 - £7,200), and a fee for the preparation of the accounts of £2,40012020- £ -1. 11. Staff remuneration 2021 2020 Wages and salaries Social security costs Contribution lo defined contribution pension schemes 401,585 39.451 95.673 371,831 44,586 76,206 536,709 492,623 Page 32 NATIONAL AXIAL SPONDYLOARTHRITIS SOCIETY NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2021 11. Staff remuneration Icontinuedl The average number of persons employed by the Charity during the year was as follows.. 2021 No. 2020 No. Employees 13 12 The number of employees whose employee benefits (excluding employer pension costs) ex￿eded £60,000 was.. 2021 No. 2020 No. In the band £90,001- £100,000 In the band £100,001- £110,000 In 2021, the gross salary of the CEO was £100,00012020.' £100,431). 12. Trustees. remuneration and expenses During the year, no Trustees re￿iVed any remuneration or other benefits (2020- £NIL). During the year ended 31 December 2021, expenses lolalling £353 were reimbursed or paid direcdy lo 3 Trustees (2020- £NILI. These expenses were in relation to travel expenses. 13. Tangible fixed assets Office equipment Cost or valuation At 1 January 2021 Additions 20,291 1,318 At 31 December 2021 21,609 Depreciation At 1 January 2021 Charge for the year 9,588 5,402 At 31 December 2021 14,990 Page 33 NATIONAL AXIAL SPONDYLOARTHRITIS SOCIETY NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2021 13. Tangible fixed assets (continued) Office equipment Net book value At 31 December 2021 6,619 At 31 De￿￿tser 2020 10.703 14. Investment property Long temi leasehold investment property Valuatlon At 1 January 2021 700,000 At 31 December 2021 700,000 Investment propety comprises residential flats let. The fair value of the investment property has been arrived at on the basis of a valuation carried out by the Iruslees. The valuation was made on an open market value basis by referen￿ lo market evidence of transaction prices for similar properties. Page 34 NATIONAL AXIAL SPONDYLOARTHRITIS SOCIETY NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2021 15. Fixed asset investments Other fixed asset investments Cost or valuation At 1 January 2021 Revaluations 29,100 24,900 At 31 December 2021 54,000 Net book value At 31 December 2021 54,000 At 31 Decembgr 2020 29,100 16. Debtors 2021 2020 Due wlthln one year Trade debtors Other debtors Prepayments and accrued income 23,622 85.361 6.078 6,458 176,500 5,121 115,061 128,079 17. Creditors: Amounts falling due within one year 2021 2020 Trade creditors Other laxalion and social security other creditors Accruals and deferred income 12,985 18,510 1.249 16,027 76,929 22.242 29,224 75,507 48,771 203,902 Page 35 NATIONAL AXIAL SPONDYLOARTHRITIS SOCIETY NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2021 18. Statement of funds statement of funds - current year Balance at 31 Gainsl December (Losses) 2021 Balance at 1 January 2021 Transfers inlout Income Expenditure Unrestricted funds General Funds- all funds 1.172.015 623,506 1725.272} 8,313 24.900 1.103,462 Restrlcted funds Branch funds Branch Development Fund Fergus Rogers Fund Aspiring lo Excellence 304.487 83.507 {80,910} 18.3131 298.771 5.127 {535} 4,592 2,052 2,052 123,620 134,531 1108,513) 149,638 Cimzia Select Programme National Lottery Fund Ophthalmologyl Gastroenterolog y project Self management programme COVID-19 Gold Standard Good Boost 150 150 5.037 15.037} 9,205 9,205 13,962 3.541 1.458 11,755 32,240 (30,961) 13,541} 1132.596} 116,252} 124,078) {10,407} 15,241 251,722 4,662 28,000 12.400 11.900 120,584 165 APPG 3,922 1,993 11,900 NASS Voices Round Table 480,394 558,962 1412,830) 18,3131 618,213 Total of funds 1,652,409 1,182,468 11.138,102} 24,900 1,721,675 Page 36 NATIONAL AXIAL SPONDYLOARTHRITIS SOCIETY NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2021 18. Statement of funds (continued) statement of funds - prior year Balance at 31 December 2020 5alance al l January 2020 Income Exp8nditure Unrestricted funds General Funds - all funds 1,626,927 473,075 f867,987J 1, 172,015 Restrlcted funds Branch Funds Branch development fund Fergus Rogers Fund Aspiring to Exeellence APPG Cimzia Select Programme National Lottery Fund Ophthalmologyl Gastroenterology project Self Management Programme COVID-19 268,862 5,211 2,416 86,038 115,844 (80,219) (84) (364) {84,918) (12,272) 304.487 5,12T 2,052 123,620 122,500 12.272 750 9, 750 9,205 13.962 750 5,037 9,205 13.962 (4, 713J 77,828 98, 700 16,277 (14,287J {97,242J (4,522) 3,541 1,458 11,755 Gold Standard Good Boost 362,527 416,488 f298,621J 480,394 Totsl offunds 1,989,454 829,563 (1, 166,608J 1,652,409 Page 37 NATIONAL AXIAL SPONDYLOARTHRITIS SOCIETY NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2021 19. Summary offunds Summary offunds - current year Balance at 31 Gainsl December (Losses) 2021 Balance at 1 January 2021 Transfers inlout Income Expenditure General funds Reslricled funds 1,172,015 480.394 623,506 558.962 1725,272) 1412,830} 8,313 18.3131 24,900 1,103,462 618.213 1,652,409 1,182,468 11.138,102} 24,900 1,721,675 Summary offunds - prior year Balan￿ 8t 31 December 2020 Balance al 1 January 2020 Income Expenditure General funds 1,626,927 362,527 413,075 416,488 f867,987J (298,621J 1, 172,015 480,394 Reslricled funds 1,989,454 829,563 (1, 166,608) 1,652,409 20. Analysls of net assets between funds Analysls of net assets between funds - current year Restricted Unrestricted funds funds 2021 2021 Total funds 2021 Tangible fixed assets Fixed asset investments 6,619 54,000 700,000 391,614 148,7711 6,619 54,000 700,000 1.009,827 148,7711 Investment propety Current assets 618,213 Creditors due within one year Total 618,213 1, 103,462 1,721,675 Page 38 NATIONAL AXIAL SPONDYLOARTHRITIS SOCIETY NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2021 20. Analysis of net assets between funds {continuedl Analysis of net assets between funds - prior year Restricted Unrestricted funds funds 2020 2020 Total funds 2020 Tangible fixed assets Fixed asset investments Investment property Current assets Creditors due within one year 10,703 29,100 700,000 636,115 f203,901J 10,703 29,100 700,000 1,116.509 (203,901) 480,394 Total 480,394 1,172,017 1,652,411 21. Reconciliation of net movement in funds to net cash flow from operating activities 2021 2020 Nel incomelexpendilure for the year las per Statement of Financial Aclivitiesl 69.266 (337,045) Adjustments for: Depreciation charges IGainsllLosses on investments Dividends, interests and rents from investments Loss on the sale of fixed assets IlncreasellDecrease in debtors IncreasellDecreasel in creditors 5.402 {24.900} 125,029} 5,073 28, 700 (26,434) 74,440 77,878 109,977 13.018 1155,131} Net Cash used In operatlng actlvltles 1117,374} (187,411) 22. Analysis of cash and cash equivalents 2021 2020 Cash in hand 894,766 988,429 Total cash and cash equivalents 894,766 988,429 Page 39 NATIONAL AXIAL SPONDYLOARTHRITIS SOCIETY NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2021 23. Analysis of changes in net debt At1 January 2021 Cash flows At31 December 2021 Cash al bank and in hand 988,429 {93,663} 894.766 988,429 193,663} 894,766 24. Pension commitments The Charity operates a defined contribution pension scheme. The assets of the scheme are held separately from those of the Charity in an independently administered fund. The pension cost charge represents contributions payable by the Charity to the fund and amounted to £6,488 12020 - £8,937) payable lo the fund at the balance sheet date and is included in creditors. 25. Related party transartions There were no related paty transactions during the year12020'. £Nill. Page 40