**Charity numbers: 1183175 & SC049746** ## **NATIONAL AXIAL SPONDYLOARTHRITIS SOCIETY** ## **TRUSTEES' REPORT AND FINANCIAL STATEMENTS** **FOR THE YEAR ENDED 31 DECEMBER 2022** ## **NATIONAL AXIAL SPONDYLOARTHRITIS SOCIETY** ## **CONTENTS** ||Page| |---|---| |**Reference and administrative details of the Charity, its Trustees and advisers**|1| |**Trustees' report**|2 - 19| |**Independent auditors' report on the financial statements**|20 - 24| |**Statement of financial activities**|25 - 26| |**Balance sheet**|27| |**Statement of cash flows**|28| |**Notes to the financial statements**|29 - 50| **NATIONAL AXIAL SPONDYLOARTHRITIS SOCIETY** ## **REFERENCE AND ADMINISTRATIVE DETAILS OF THE CHARITY, ITS TRUSTEES AND ADVISERS FOR THE YEAR ENDED 31 DECEMBER 2022** **Trustees** Rajeevendra Kumar Mahapatra, Chair Nicholas Reid, Treasurer (elected 25 September 2022) Dr Antoni Tuck Yin Chan, Trustee Gillian Eames, Trustee Nicholas Clarke, Trustee (retired 25 September, 2022) Paul Curry, Trustee (re-elected 25 September 2022) Poppy Hocken, Trustee Claire Jeffries, Trustee Dr Jacqueline Harris, Trustee Dr Lesley Jane Kay, Trustee Patricia O-Callaghan, Trustee (retired 28 June, 2022) Danny McFarlane, Trustee (retired 25 September, 2022) Hannah Elizabeth Murphy, Trustee Prof Hasan Imam Syed Tahir, Trustee (elected 25 September 2022) Alexia Katherine Dreese Granatt, Trustee (elected 25 September 2022) **Charity registered numbers** 1183175 and SC049746 **Principal office** Unit 6 Cambridge Court 210 Shepherds Bush Road London W6 7NJ **Independent auditors** BKL Audit LLP 35 Ballards Lane London N3 1XW **Bankers** Barclays Bank UK Plc 1 Churchill Place London E14 5HP Page 1 **NATIONAL AXIAL SPONDYLOARTHRITIS SOCIETY** ## **TRUSTEES' REPORT FOR THE YEAR ENDED 31 DECEMBER 2022** The Trustees present their annual report together with the audited financial statements of the National Axial Spondyloarthritis Society for the year 1 January 2022 to 31 December 2022. ## **Objectives and activities** NASS’ vision is as follows: “ _The future we want to create is one where every person with axial spondyloarthritis (axial SpA) has timely and effective diagnosis, treatment and care, is empowered to make informed health choices and feels part of a supportive community.”_ - The Charity seeks to do this by: - providing information to the general public about axial SpA, and advice to people living with the condition, their families, carers, service-providers and employers - advocating to ensure that every person with axial SpA has timely and effective diagnosis, treatment and care - funding and disseminating research and analysis to advance scientific understanding of the condition and its effective treatment. ## **a. Policies and objectives** In setting objectives and planning for activities, the Trustees have given due consideration to general guidance published by the Charity Commission relating to public benefit, including the guidance 'Public benefit: running a charity (PB2)'. 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 to 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. ## **b. Strategies for achieving objectives** In accordance with the provisions set out in its Constitution, the Trustees have adopted the following strategy for the period 2020 – 2024 to meet NASS’ principal objects: To ensure that people with axial SpA receive timely diagnosis, effective treatment and care - Maintain pressure at national level to ensure effective and widespread implementation of the NICE Guideline and Quality Standard for axial SpA - Continue to run an All Party Parliamentary Group for axial spondyloarthritis - Undertake Parliamentary work in the devolved nations - Develop and publish a Gold Standard time to diagnosis route map - Commission research on the economic consequences of a delay to diagnosis - Create impactful ways to engage primary care professionals and those in appropriate secondary care services to ensure that they identify and refer patients who may have axial SpA Page 2 ## **NATIONAL AXIAL SPONDYLOARTHRITIS SOCIETY** ## **TRUSTEES' REPORT (CONTINUED) FOR THE YEAR ENDED 31 DECEMBER 2022** - Form an alliance to protect NHS hydrotherapy services - Develop a primary care clinical champions programme - Continue to work in partnership with professional bodies - Support rheumatology and other services to 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 service delivery - Disseminate learning from _Aspiring to Excellence_ - Raise awareness among those working in emergency care and NHS 111 To empower, inform and inspire people affected by axial SpA - Ensure that everyone affected by axial SpA has access to personalised support and the best information about the condition - Extend personalised support 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 network to continue to ensure people can access regular group, physiotherapy led exercise sessions - Support and motivate people to confidently and safely exercise independently - Ensure that everyone affected by axial SpA has the skills, confidence and knowledge they need to manage their condition optimally - Develop a face-to-face self-management pilot programme and roll out if successful - Consider an online version of a 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 to try and increase knowledge. Chiefly this activity will include: - Using case studies of people living with axial SpA to generate media coverage - Encouraging our members and supporters to 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 international awareness days - Create an active community of NASS members and supporters who work together - Make more use of online tools such as Facebook Live for streaming events, conversations and debates, to encourage participation and engagement - Increase our online supporter numbers through social media promotion, listening, and outreach to potential supporters - Encourage members and supporters to take 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 we 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 its resources - Develop annual membership campaigns to increase the number of members and membership revenue - Seek opportunities to outreach through external events outside of the sector at which NASS can contribute and have visibility. Page 3 **NATIONAL AXIAL SPONDYLOARTHRITIS SOCIETY** ## **TRUSTEES' REPORT (CONTINUED) FOR THE YEAR ENDED 31 DECEMBER 2022** ## **c. Activities undertaken to achieve objectives and achievements** ## **Introductio** n 2022 was a very successful year for NASS. Our large programmes – reducing diagnostic delay, improving the quality of care, and supporting self-management – made significant progress and extended their reach. Our Helpline and Information service continued to meet very high levels of demand and our national network of branches started to return to some sense of normality following the pandemic. Our profile – within Government, the NHS, the media and social media – was extended. COVID-19 continued to impact significantly on our work. Although total numbers of enquiries to the helpline and information service dropped from their peak in 2021, demand was still higher than pre-COVID. This situation is likely to continue in the short term, so in 2023 we will seek to maintain our self-management programme as well as our extended helpline opening hours and benefits advice support. There are chronic workforce shortages in hospital rheumatology departments across the UK. The severe understaffing has led to long waiting times and delays in care. Our helpline regularly speaks to patients who find calls to rheumatology department helplines go unreturned, whose appointments are cancelled after months of waiting and who find referrals to physiotherapy or occupational therapy are never followed up. This puts more pressure on NASS services and makes it even more critical that we work to help inform people about axial SpA and how they can self-manage their condition. The economic climate has deteriorated, with a cost of living crisis and high inflation. This is likely to impact negatively on our fundraised income, increase our costs and increase the volume of callers to our information and support service. A recent YouGov poll found that 21% of people are donating less than usual to charities because of the economic situation. However, in the same poll, 20% also report that they are more likely to donate their time and 21% said that they are more likely to campaign for a charitable cause. In 2023 we will strengthen our volunteer base wherever possible and tap into the other non-cash assets of our supporters. We were able to maintain and extend the visibility of our work on improving diagnosis and care at a time when the NHS is under enormous pressures and there is a general sense of fragility in rheumatology services. As a patient organisation we have an important role in holding up a mirror to the NHS. Our challenge is to frame our work in such a way that it will engage rather than alienate healthcare professionals (HCPs). ## **Reducing diagnostic delay** It should be possible for every person experiencing symptoms of axial spondyloarthritis (axial SpA) to receive a diagnosis within one year of symptom onset. In 2020, respondents to our national consultation process – HCPs, professional bodies and patients – all agreed that this ambition could be realised, and in June 2021 NASS published a route map to achieve a Gold Standard time of one year. Starting from a current baseline average of 8.5 years, the achievement of this goal will require transformational change. This includes a significant increase in awareness of the condition among HCPs and the general public, a critical mass of clinical leaders who will drive up health care performance in axial SpA, the widespread use of technology to ensure that axial SpA is higher within clinical reasoning and to support diagnosis, the routine use of pathways to ensure that patients are referred directly to rheumatology for assessment, and consistent use of agreed national protocols for imaging. Above all, to attain such a dramatic change in time to diagnosis we must win hearts and minds, build a social movement of people who want to work with us to create change, and demonstrate proof of concept for our ideas. 2022 was the first full year of implementation of our route map. Page 4 **NATIONAL AXIAL SPONDYLOARTHRITIS SOCIETY** ## **TRUSTEES' REPORT (CONTINUED) FOR THE YEAR ENDED 31 DECEMBER 2022** ## Making the case for change We have been successful in making the case for change through national inquiries, Freedom of Information (FOI) requests and research studies: - We commissioned and published the first economic model of the economic costs of delayed diagnosis. It estimated that the cost to the UK economy is £18.7 billion per year, and the total average cumulative cost per person of an 8.5 year wait is £193,512, most of which is borne by the individual. - We used a FOI request to assess the current provision across the UK in direct internal referrals to rheumatology from the key specialities of Dermatology, Gastroenterology and Ophthalmology, including the methods used, screening tools and the ability of providers to track internal referral volumes and an estimation of current frequency of referrals. We proposed four recommendations aimed at ensuring delays to direct referrals are reduced. - We undertook an analysis via a FOI of the UK wide use of MRI in the diagnosis of axial SpA, comparing the changes since an initial review in 2017 and the publication of consensus guidance in 2019. - We collaborated with the British Society of Gastroenterology and Chron's and Colitis UK on a landscape review to help us understand awareness of axial SpA in the speciality, the practise and confidence in referring into rheumatology and the tools in place to help this. - We partnered with Moorfields Eye Hospital and the Royal College of Ophthalmologists and began work on a landscape review to help us understand the awareness of axial SpA in the speciality, the practise and confidence in referring into rheumatology and the tools in place to help this. We brought these results to the attention of Government Ministers, other parliamentarians, policymakers and HCPs: - In June, we shared the economic modelling results with the relevant Minister in the Department of Health and Social Care and discussed the importance of raising public awareness in reducing time to diagnosis. - We influenced the funder of the National Early Inflammatory Arthritis Audit to include new datapoints on time to diagnosis so that, for the first time, we will have comprehensive national audit data to track changes in performance in axial SpA. - We supported the best MSK/GIRFT programme to embed our approach in a new national axial SpA patient pathway. - We presented our findings on the impact of the programme to the All Party Parliamentary Group for axial SpA. - We presented our burning platform to British and European health conferences and regional SpA academies. ## Raising public awareness about early diagnosis Raising public awareness about axial SpA and inflammatory back pain is key to earlier diagnosis. We demonstrated proof of concept in our public awareness campaign which since its launch has reached almost 2,000,000 people through social media. In addition, 1,000,000 people watched our campaign videos. There were 106,000 visits to our bespoke diagnosis website, over 20,000 visited our online symptom checker and 9,000 completed the symptom checker. Key campaign content included: - A set of campaign videos, including three comedy hero videos to motivate a cold audience aged 40 under who are on social media to find out more about axial SpA. People who watch the videos were retargeted with case study videos and digital ads that feature SPINE acronym. - A set of digital ads that use the SPINE acronym, to increase recognition of the five key symptoms of axial SpA. The ads drive people to the symptoms checker on www.actonaxialspa.com - A series of videos telling stories about life with axial SpA. - Two videos featuring case studies of people who faced financial insecurity, while they waited for a diagnosis, one of which was a finalist in the Charity Film Awards. Page 5 **NATIONAL AXIAL SPONDYLOARTHRITIS SOCIETY** ## **TRUSTEES' REPORT (CONTINUED) FOR THE YEAR ENDED 31 DECEMBER 2022** ## Raising clinical visibility for axial SpA in primary care The lengthiest part of the delay in diagnosis is in primary care. We sought to address this by creating a cadre of clinical champions in primary care and community services whose work would ensure that axial SpA is higher within the clinical reasoning of primary care professionals, so that patients who present with suspected axial SpA are identified at the first presentation and urgently referred to rheumatology. We appointed the NHS Transformation Unit as our technical provider to design and deliver _Champions in Primary Care_ and, following a competitive process, we offered places to twelve primary care professionals to be Champions. At the end of September our 12 _Champions in Primary Care_ started their journey. Over the next two years they will: - Receive leadership development support, training in the theory and methods of quality improvement and assistance with identifying and implement improvement projects which they will test and refine - Work together in a national network to foster community-building, the exchange of ideas and good practise and act as catalysts for change - Co-create a body of knowledge, methods, tools and experience, and work to share their learning with primary and community services. We also secured an agreement with the University of Nottingham for the _Champions in Primary Care_ to act as pilot sites for an axial SpA pop up tool in the medical records system which alerts the GP to suspected axial SpA. A webinar was held in late November to introduce the tool to them and agree how it can be adopted. At the end of 2022, the All Party Parliamentary Group on axial SpA published the results of a new Inquiry into the implementation of NICE Guideline 65 (NG65). ## Engaging healthcare professionals (HCPs) We carried out focus group work with HCPs about the drivers and barriers in relation to the delay to diagnosis, what tools they feel would assist them and how they would like to engage in a peer-to-peer support network. From those discussions, we will develop a campaign that includes rheumatology department visits, the development of a toolkit of resources for HCPs, the creation of a peer to peer network to provide support, and the creation of a Change Maker award to acknowledge the work of those who have demonstrated significant progress in implementing the gold standard time to diagnosis. ## Creating national level data to measure the time to diagnosis Without large scale UK data on the time to diagnosis we will be unable to monitor with accuracy any changes. England and Wales have the National Early Inflammatory Arthritis Audit, but it contains very little information about axial SpA. However, we were successful in influencing the funder of the audit to contain new data points about diagnostic delay which will be implemented from mid 2023. In addition, we developed a new audit tool to understand how we are influencing and catalysing change to drive down diagnosis with the 19 departments involved in our _Aspiring to Excellence_ programme (see later). A group of participating clinicians worked with us to create the audit tool which went live in October. We will provide a first report in September 2023. Page 6 **NATIONAL AXIAL SPONDYLOARTHRITIS SOCIETY** ## **TRUSTEES' REPORT (CONTINUED) FOR THE YEAR ENDED 31 DECEMBER 2022** ## **Helping people to live well with axial SpA** ## Helpline and information services The COVID-19 pandemic placed unprecedented stress on the NHS. With many patients unable to access rheumatology services, the demand for our services was greater than ever. Helpline contacts for 2021 (7434) were a third higher than for 2020 (5632), and 50% higher than 2019. In 2022, we supported 6,945 people, a drop of only 9% from the previous year. It demonstrated the continued backlog facing rheumatology coming out of the pandemic. There was also a noticeable number of calls on the NASS helpline relating to people who are having economic difficulties and have turned to NASS for help and advice. _“Honestly thank you so much for all of this information and thank you for understanding. I know it’s hard for people without this to quite comprehend what an AS sufferer deals with on a daily basis. I am truly amazed at all the help you guys are giving.”_ In 2022 we wrote 229 letters in support of disability benefit claims which resulted in approximately £1,000,000 of benefits being awarded. _“I am very relieved to have finally got the award as it's been a stressful time for me. I doubt I would have got that if it wasn't for your letter. Thank you so much. They said the evidence submitted was excellent so that there was no need for an assessment in person.”_ ## Our national network of NASS branches As life began to return to normal after COVID-19, our branches returned to normality, providing vital physiotherapy and hydrotherapy support to thousands of people living with axial SpA. By December 2022, 65 branches were active again. The return to physical sessions has represented a great deal of hard work by the volunteers involved in NASS branches. Few have simply been able to return to sessions as they were pre-COVID. Instead, they have had to find new ways of working and, in a number of cases, find new venues. Five branches sadly closed, but three new branches opened. Our new branches cover Cheltenham and Gloucester, Nottingham and Cornwall. ## - Helping people to self manage effectively Our self-management programme aims to help people build the skills and confidence they need to take control of their axial SpA and their life. On average, someone with axial SpA might spend two hours each year with a healthcare professional discussing their axial SpA. That leaves 8,758 hours where they have to manage their condition on their own. In 2022 we ran 34 My AS, My Life Facebook Live sessions. There were over 77,500 views of our sessions on Facebook and YouTube. Since April 2020, we have run 102 sessions with over 263,000 views. Evaluation shows that 90% of users feel more connected to other people with the condition, 88% understand more about axial SpA after watching the sessions and 80% feel more confident managing the condition as a consequence. _I want to say a huge thank you. My anti-TNF stopped working, leading to a rather rough year. I can’t express how much your videos have helped and been a real comfort_ . In addition, we established a regional self-management programme in collaboration with local rheumatology departments. We ran 28 online sessions with 11 rheumatology departments, reaching 649 people with axial SpA. We presented the evaluation results at the British Society of Rheumatology conference and won a prize for best conference poster. We also published an article on the programme in _OT News_ , the member magazine for the Royal College of Occupational Therapists. We acquired funding for an online learning programme ( _Your SpAce_ ). Over the summer- we ran an online consultation with people living with axial SpA along with rheumatology consultants, physiotherapists, occupational therapists, researchers and nurses. It was agreed that _Your SpAce_ should be aimed at people at Page 7 **NATIONAL AXIAL SPONDYLOARTHRITIS SOCIETY** ## **TRUSTEES' REPORT (CONTINUED) FOR THE YEAR ENDED 31 DECEMBER 2022** any stage of their axial SpA journey, but particularly those at the start of their journey. Additionally, we wanted to bring in people who are less motivated and those feeling isolated. The consensus was that _Your SpAce_ should be bite sized, sharp and easily digestible. It should be active, engaging and upbeat. Most importantly, it should not be linear – people should choose their own route through the resources. In early 2023 we will launch a series of short videos with signposting to longer videos and downloadable resources for those who want to learn more. As part of _Your SpAce_ there will be monthly meetups so people can meet others and share experiences. ## Self-management podcast NASS was one of six patient organisations invited to be involved in the One Immune Voice podcast series. The focus was on supporting people living with autoimmune and immune-mediated conditions, and their carers. ## Ensuring access to hydrotherapy Hydrotherapy, also known as aquatic physiotherapy, provides vital support to people with axial SpA, particularly to those unable to tolerate land-based therapy. However, hydrotherapy services are often a target for NHS budget cuts. In 2021 we created the Aquatic Physiotherapy and Hydrotherapy Alliance. Members include the Chartered Society of Physiotherapy, the Aquatic Therapy Association of Chartered Physiotherapists (ATACP), Arthritis Action, Muscular Dystrophy UK, Good Boost, Swim England and Versus Arthritis. In 2022 it: - Undertook a Freedom of Information (FOI) request to all NHS Trusts and Health Boards in the UK to determine current hydrotherapy in the NHS - Surveyed all ATACP members to glean their intelligence about the provision of hydrotherapy in the NHS - Published a report containing a compilation of the current research as well as FOI results - Created resources to promote and save pools, as well as template letters and press releases - Made a research application for a qualitative study. ## **Supporting healthcare professionals to improve the quality of care** In 2019 we established a quality improvement programme called _Aspiring to Excellence_ . Delivered by our partner the NHS Transformation Unit, the programme provides education, team coaching and a national learning network to those participating. In 2022 we welcomed a further eight rheumatology departments – giving a total of 19. We continued to disseminate learning from the programme. This included the launch of a set of six new CPD accredited podcasts called _Rheum for Improvement_ . The podcasts share service improvement innovations from HCPs who work with axial SpA patients. We also launched a series of blogs showing how the teams are using quality improvement methods. It’s important to ensure that rheumatology care is underpinned by a clear patient perspective. To this end, we commissioned Headstrong Thinking Limited to survey more than 900 people living with axial SpA about their values and needs from axial SpA care and launched the report at a Parliamentary reception in November. We created a service improvement video involving NASS CEO and one of our rheumatologists in a discussion of issues being faced by primary and secondary care in the diagnosis and treatment of axial SpA, and the action NASS is taking to work together with healthcare professionals to change this. This was the most watched video at the British Society of Rheumatology conference in April 2022. Page 8 **NATIONAL AXIAL SPONDYLOARTHRITIS SOCIETY** ## **TRUSTEES' REPORT (CONTINUED) FOR THE YEAR ENDED 31 DECEMBER 2022** ## **Raising the profile of axial SpA within Government** In 2019 we worked with Parliamentarians to create an All Party Parliamentary Group on axial SpA with the aim of providing national level oversight of the implementation of NICE Guideline 65 concerning the diagnosis and treatment of spondyloarthritis. The eighth meeting of the APPG was held in May, with a focus on the role of rheumatology physiotherapy and the current work force crisis in rheumatology. The ninth meeting occurred in May and took the form of a landscape review. The APPG commissioned a second FOI Request to all NHS Trusts and Health Boards regarding the implementation of the NICE Guideline on the diagnosis and management of spondyloarthritis. We published the report at a Parliamentary reception in November. In June, NASS CEO Dale Webb met with the then Minister for State for Care and Mental Health Gillian Keegan to discuss the possibility of government support for an awareness campaign on axial SpA. We also worked with the new musculoskeletal clinical leads in the Welsh Government, and continued to support Scotland’s Cross Party Group on Arthritis and Musculoskeletal Conditions. ## **Women and axial SpA – tackling inequalitie** s Women and axial SpA has long been an issue that needs to be addressed. Women have a longer time to diagnosis than men (prompted in part by a lack of awareness in primary care). We secured funding to commission research from Headstrong Thinking on gender and gender identity in axial SpA which we will publish in 2023. We are also supporting a research application on pregnancy led by University College London Hospitals. ## **Ensuring effective switching to biosimilars** In 2018 Humira lost its patent and biosimilars entered the UK market. Due to the available cost savings, this meant that people taking Humira for a range of conditions were switched across to the new biosimilar medications. During this process NASS was part of an NHS England steering group with other patient organisations including the National Rheumatoid Arthritis Society, Crohn's and Colitis UK and the Psoriasis Association. The four patient associations ran a joint survey asking people for their experience of the switch process. We were particularly keen to learn whether patient consent was obtained before switching. Over 900 people took part, and a paper was published in the _British Medical Journal_ . ## **Supporting good emotional wellbeing research** In summer 2019, NASS funded King’s College London to carry our research into the emotional impact of living with axial SpA. Over the past three years they have carried out a diary study, depth interviews and focus groups. The researchers produced a narrative report for NASS along with a short animation and gave presentations at scientific conferences. ## **Media engagement** We were successful in securing articles in the broadcast and print media about axial SpA: - _The Times_ (in-print and online) ran a story on our research which shows women wait longer for a diagnosis of axial SpA than men - Our report about the economic cost of delayed diagnosis received coverage on _Sky News Radio_ and in _The Daily Express_ and _The Limbic_ - _Women_ magazine published a feature article about the struggles NASS community member Amy Fisher experienced as she waited for a diagnosis - _ITV Tonight_ featured a story of NASS community member Rowan Lutton. Rowan faced a five-year delay to Page 9 **NATIONAL AXIAL SPONDYLOARTHRITIS SOCIETY** ## **TRUSTEES' REPORT (CONTINUED) FOR THE YEAR ENDED 31 DECEMBER 2022** diagnosis and believes her gender played a part in this - NASS trustee Gillian Eames was interviewed for the _Grumpy Gits_ podcast about her life with axial SpA. It is the world's most listened to podcast on disability issues. ## **Social media** We continued to reach and engage broader audiences on social media, creating a sense of community and sharing stories about people’s experiences of life with axial SpA. We grew our followership, with over 42,000 followers across social media: - 25,158 followers on Facebook - 3,665 followers on Instagram - 7,414 followers on Twitter - 792 followers on Linkedin - 6,200 subscribers on You Tube. ## **Membership** Our members are the lifeblood of the society. In 2022, our membership grew by 2.5% to 4,164. We held another successful Members Day and scheduled in NASS Voices events in Glasgow and Cardiff for early 2023. ## **d. Key performance indicators** Performance against key indicators was as follows: - **Return on Investment (ROI) by fundraising channel.** We want to ensure that our income generation activities are optimizing income in an efficient way. We achieved ROI ratios as follows (target ratios are in parenthesis): subscriptions 9:1 (9:1), donations 6:1 (6:1), Trust Fundraising 6:1 (10:1), Community 2:1 (5:1), Events 6:1 (5:1), Trading 8:1 (8:1). In 2023 we will strengthen data segmentation, to understand donor behaviour and be more targeted in our communications. We will also focus on building relationships with people with a higher net worth to increase their engagement in giving and fundraising - **% of expenditure on charitable activities.** In 2022 75% of our expenditure was charitable, with a target of 70-80% - **Total annual value of successful benefit applications for our members.** We again helped members to secure £1,000,000 of welfare support payments - **Number of people accessing our website information pages** : 294,000 - **Numbers of people accessing our Facebook Live sessions** : 77,500 - **Helpine requests processed within two working days** : 97% (target is 95%). ## **e. Volunteers** NASS is heavily dependent on 250 volunteer members who provide support at branch level. Volunteer members are unpaid and NASS’ 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 80 NASS branches offer regular, physiotherapist-led group exercise for anyone living with axial SpA. They Our are sub-committees of NASS and are led by a committee usually comprising a Chair, Treasurer and Secretary. We support our branches with a suite of resources, regular promotion of their activities, online meetings and a named member of staff who is available Monday to Friday to help with any problems or issues. Page 10 **NATIONAL AXIAL SPONDYLOARTHRITIS SOCIETY** ## **TRUSTEES' REPORT (CONTINUED) FOR THE YEAR ENDED 31 DECEMBER 2022** ## **f. Fundraising activities and income generation** ## **Raising funds for NASS** Thank you to everyone who supported us in 2022 by donating or fundraising. We don’t receive public funding and couldn’t do our work without the generosity of our supporters. The money we raise ensures that we’re here to transform axial SpA diagnosis and care, and offer practical support and advice to anyone affected by the condition. In 2022 our fundraising activities included: _**Community and events fundraising:**_ 294 people took part in a fundraising event. Thank you to everyone who took part in Walk Your AS Off, Stretch-tember, took on a challenge event, or organised their own fundraising. _**Donations and individual giving** :_ Despite a cost-of-living crisis 728 people gave a cash gift. Whether you gave a one-off cash gift, a regular donation, a gift in celebration or gave to our Spring or Winter Appeal, we want to thank you for your generosity. _**Legacy fundraising** :_ We are extremely grateful to everyone who leaves a gift in their Will. We received income from five legacies in 2022. ## _**Trading:**_ We want to thank everyone who took part in a raffle, made a bid in one of our online auctions or bought one of our Christmas Cards in 2022. _**Trust fundraising**_ : we would like to thank the following charitable Trusts that supported us in 2022 collectively giving £64,000. Douglas Heath Eves Charitable Trust John Coates Charitable Trust Lord Leverhulme's Charitable Trust Margaret Jeannie Hindley Trust Marsh Christian Trust Miss M E Swinton Paterson’s Charitable Trust Souter Charitable Trust Stoke-on-Trent and North Staffordshire CCGs Long Term Condition Support Fund The Bernadette Charitable Trust The February Foundation The Forrester Family Trust The G C Gibson Charitable Trust The Garfield Weston Foundation The Hamilton Wallace Trust The Hospital Saturday Fund The Mary Homfray Charitable Trust The Michael Cornish Charitable Trust The Purey Cust Trust CIO The Shanly Foundation The Simon Gibson Charitable Trust The Walter Guinness Charitable Trust The William Webster Charitable Trust Page 11 **NATIONAL AXIAL SPONDYLOARTHRITIS SOCIETY** ## **TRUSTEES' REPORT (CONTINUED) FOR THE YEAR ENDED 31 DECEMBER 2022** We would also like to thank the following companies that supported us in 2022: AbbVie Ltd £30,400 Biogen Idec Ltd £30,000 Eli Lilly and Company £30,000 Innovate UK £11,145 Janssen-Claig Limited £6,320 Novartis Pharmaceuticals UK Ltd £115,688 UCB Pharma Ltd £265,789 Any relationship NASS has with a pharmaceutical company is underpinned by the following principles: - **Independence** – The independence of NASS must not be compromised by the relationship with an external organisation or by the agreed working arrangements. The financial benefit must be made available for the support of our charitable activities without restriction. We will not allow funders to influence our campaigning, policymaking, research or fundraising for their own purposes. We will ensure our editorial independence is maintained and all information produced by NASS will be based on the latest evidence, informed by our Medical Advisory Board - **Transparency** – Any relationship with an external organisation is not an endorsement of their product or organisation and will be made transparent to our members, supporters, staff and the general public including in our annual Report and Accounts. All partnerships will be governed by a written agreement which will detail requirements and expectations from each party - **Benefit for those living with axial SpA** – Any relationship formed with an external organisation must be positive for NASS members and people living with axial SpA and in furtherance of our charitable aims - **Regulation and good practice** – All funders must comply with all relevant laws and regulations, as well as good practice. This includes full compliance with the Association of the British Pharmaceutical Industry's Code of Practice - **Use of NASS logo** - our logo may only be used following written approval from NASS. We may use a funder's mark where relevant to the relationship including in webinars, event banners, on our website or on press releases where appropriate. The use of a funder’s trademark will have no impact on the independence of the charity - **Sharing expertise and knowledge** - We will work with funders to share non-product expertise and knowledge. This may include participation in networking events and meetings - **Privacy policy** - In line with our privacy policy NASS will not, under any circumstances, share the personal data of any of our service users or supporters with a pharmaceutical company - **Alignment with our strategy and values** - Any collaboration or cooperation with pharmaceutical companies will be assessed against the ethics, desirability and practicality in relation to the overall plans and work of NASS. Page 12 **NATIONAL AXIAL SPONDYLOARTHRITIS SOCIETY** ## **TRUSTEES' REPORT (CONTINUED) FOR THE YEAR ENDED 31 DECEMBER 2022** ## **Fundraising responsibly** We rely on the generosity of our donors and fundraisers to do our life changing work and have processes and policies in place to ensure we fundraise responsibly. - We are a member of the Fundraising Regulator and pay an annual levy - We are transparent about our fundraising and treat donors and fundraisers respectfully and fairly - We provide personal stewardship to anyone who is taking part in a fundraising activity for us; this includes ensuring people are aware of the risks of taking part in activities - We explain how to opt out of communications and people are easily able to unsubscribe from emails - We adhere to data-protection legislation and provide information on our website about our data-privacy policy, and how to opt-out of communications - We take all reasonable steps to opt-people out of communications if they request to no longer hear from us - We respond quickly and efficiently to any complaints about fundraising. We received no official complaints in 2022 - We mitigate against the risk of not reaching our fundraising targets by reviewing our management accounts monthly to monitor income levels, reforecasting and taking appropriate actions if fundraising income is below the levels we forecast. We have also introduced a quarterly analysis of our fundraising income by ROI - We are registered with Hammersmith and Fulham Council as a Small Society Lottery under Paragraph 42 of Part 5 of Schedule 11 to the Gambling Act 2005 - Our Summer Raffle in 2022 raised, £5,445. 57.6% of the proceeds were retained as unrestricted income to fund our work, the remaining income covered prizes and the administrative cost of running the lottery - Our Winter Raffle in 2022 raised £4,225. 57% of the proceeds were retained an unrestricted income and used to fund our work, the remaining income covered prizes and the administrative cost of running the lottery. A £50 prize was donated back to NASS as a cash gift. ## **g. Investment policy and performance** To minimise the risk of potential loss of funds and maintain financial security, a portion of our funds is held in cash within a reputable bank. Additionally, the charity has made strategic investments in two properties we own which provide a consistent and reliable source of income for our charitable initiatives. NASS’ investments also include one statuette gifted by Dame Elisabeth Frink. All investments are carried at market value. Page 13 **NATIONAL AXIAL SPONDYLOARTHRITIS SOCIETY** ## **TRUSTEES' REPORT (CONTINUED) FOR THE YEAR ENDED 31 DECEMBER 2022** ## **Financial review** ## **a. Going concern** After making appropriate enquiries, the Trustees have a reasonable expectation that the Charity has adequate resources to continue in operational existence for the foreseeable future. For this reason, they continue to adopt the going concern basis in preparing the financial statements. Further details regarding the adoption of the going concern basis can be found in the accounting policies. Trustees closely monitored the charity’s reserves as a consequence of the deteriorating economic environment. The Board of Trustees approved in principle taking out a loan against the properties that NASS owns should reserves deteriorate further. Trustees approved a plan for cost reductions measures proposed by the CEO. ## **b. Reserves policy** Free reserves, defined as the balance of unrestricted funds less fixed assets, at the end of reporting period amount to £93,145 (2021 - £342,843). The remaining funds are comprised of two properties (valued at £650,000) from which NASS derives rental income, other tangible assets of £332, branch funds of £265,269, other restricted grants totalling £143,707, and one statue gifted by Dame Elisabeth Frink valued at £27,000. Unrestricted cash reserves represent 1.3 months operating costs. At present NASS does not have an endowment fund and therefore income must be raised each year from voluntary sources and total income is likely to fluctuate from year to year. We aim to hold 6-9 months' free reserves. This working capital protects the continuity of our core work, that is, work not funded through restricted income. Core work includes our information and support service, awareness raising, campaigning and policy influencing, and the work of our branches across the UK. We have chosen a reserves level of 6-9 months' having considered the level of predictability/unreliability 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 companies) 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 2022 our unrestricted cash reserves fell below our policy target. This was a consequence of two factors: the impact of the COVID pandemic on community and events fundraising and a lower than average legacy income. We will continue to monitor this in 2023 and take action if necessary. To ensure continued delivery of our charitable objectives, the Board decided to use some of the reserves below the reserves policy level. We remain committed to ensuring the long-term sustainability of our organisation and its mission. ## **c. Material investments policy** The Charity holds two properties that are rented out to private tenants. Properties were chosen as a reliable source of income for the Charity and the expected income is set at £28,000 per annum given both properties are fully let. Page 14 **NATIONAL AXIAL SPONDYLOARTHRITIS SOCIETY** ## **TRUSTEES' REPORT (CONTINUED) FOR THE YEAR ENDED 31 DECEMBER 2022** ## **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 income: NASS seeks to broaden and expand its income from all sources. Nevertheless, NASS is dependent upon voluntary income, both at branch level and at national level, and aims to increase its membership locally and nationally - Loss of reputation: NASS seeks at all times to maintain its independent viewpoint. Grants from pharmaceutical companies are strictly controlled so as to ensure that our independence is not compromised - Loss of staff: NASS has a reward strategy to ensure that the charity is able to recruit and retain high quality staff. It also has a set of HR policies to provide the appropriate framing for all HR matters. NASS has a safeguarding policy and set of procedures applicable to beneficiaries, staff, trustees and volunteers. Staff are trained in safeguarding and NASS branches have a training resource. The safeguarding policy and procedures are reviewed on an annual basis. ## **e. Financial risk management objectives and policies** Effective management of financial risk is a high priority. Given the importance of accurate financial projections and reporting, we have taken a comprehensive approach to ensure that we consistently maintain a high standard in all aspects of financial management. It includes implementing robust budgeting and costing methods, adhering to donor-imposed restrictions, maintaining strong financial systems and controls, regular reporting and ensuring adequate reserves and cash flow management. We also conduct regular audits and financial reviews to maintain transparency and accountability. We have a range of policies and procedures to achieve these objectives. We employ processes and controls to guarantee accurate financial forecasting and reporting. We follow a well-defined procedure for expenditure approval, ensuring that any spending is fully authorised, and documented accordingly. Furthermore, we take great care to keep detailed records of all restricted funds, which helps to ensure complete transparency and accountability in their utilisation. Collaborative budgeting methods are also used to ensure our financial management practices are practical and efficient. These policies and practices reflect our commitment to sound financial management, compliance, transparency, and accountability. ## **f. Principal funding** 45% of our funding in 2022 came from grants from pharmaceutical companies for specific projects (restricted) and a contribution to general running costs. Other income was as follows: - Membership subscriptions: 18% (being 10% at branch level and 8% at national level) - Donations: 16% - Legacies: 7% - Fundraising: 11% - Investments: 3% Page 15 **NATIONAL AXIAL SPONDYLOARTHRITIS SOCIETY** ## **TRUSTEES' REPORT (CONTINUED) FOR THE YEAR ENDED 31 DECEMBER 2022** ## **Structure, governance and management** ## **a. Constitution** The charity is a Charitable Incorporated Organisation and was registered with the Charity Commission in April 2019. The rules and regulations of the CIO are set out in its Constitution, adopted by the Board of Trustees on 14 September 2019. ## **b. Methods of appointment or election of Trustees** The governing body of NASS is a Board of Trustees consisting of elected Trustees. Only members of NASS may be appointed as Trustees and the maximum number is twelve. At every annual general meeting of the members of NASS, one third of the charity trustees shall retire from office. The charity trustees to retire by rotation shall be those who have been longest in office since their last appointment or reappointment. If any trustees were last appointed or reappointed on the same day those to retire shall (unless 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 at the conclusion of the next annual general meeting after the date of their appointment, and shall not be counted for the purpose of determining which of the charity trustees is to retire by rotation at that meeting. The members or the charity trustees may at any time decide to appoint a 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 trustees), or as an additional charity trustee, provided that the limit specified on the number of charity trustees would not as a 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 a trustee. In advance of each AGM members of NASS are widely encouraged to nominate a fellow member as Trustee. On appointment, new trustees are asked to spend a half day in the NASS central office for a briefing with the Chief Executive and staff to understand how the society works. Formal training is provided when required. ## **c. Organisational structure and decision-making policies** The Trustees meet quarterly to review matters of policy and to make appropriate judgements, directions and decisions on CIO issues. Trustees delegate authority on some matters to a Finance and General Purposes Committee consisting of the Chair, the Treasurer, up to three appointed Trustees and the Chief Executive and Finance and Administration Manager. 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 their staff. The trustees consider the Chief Executive and management team as comprising the key management personnel of the charity in charge of directing and running and operating the charity on a day to day basis. ## **d. Policies adopted for the induction and training of Trustees** All new trustees receive an induction programme which includes the organisation’s structure, scheme of delegation, NASS constitution, strategic plan, business plan and budget, trustee code of conduct and CC3, _The Essential Trustee_ . Periodic training is provided (e.g. how to read management accounts). Page 16 **NATIONAL AXIAL SPONDYLOARTHRITIS SOCIETY** ## **TRUSTEES' REPORT (CONTINUED) FOR THE YEAR ENDED 31 DECEMBER 2022** ## **e. Pay policy for key management personnel** Every three years we commission Croner HR to undertake independent benchmarking of all roles. The last review was in November 2022. Our medium term aim is to pay at the midpoint. The pay of the Chief Executive is reviewed annually by the trustees. ## **f. Related party relationships** There are no related party relationships. NASS is a member of various umbrella groups, including the Arthritis and Musculoskeletal Alliance, The Axial SpA International Federation, National Voices, the National Council for Voluntary Organisations and The Disability Benefits Consortium. Our membership of these bodies does not impact on the operating policies adopted by the charity. ## **g. Financial risk management** Further to the risks identified above, in 2023 trustees will be asked to approve a revised risk management strategy. ## **h. Trustees' indemnities** NASS holds Trustee Indemnity insurance through Markel UK, providing cover with a limit of 1 million pounds against any wrongful act claim made against a Trustee. Page 17 ## **NATIONAL AXIAL SPONDYLOARTHRITIS SOCIETY** ## **TRUSTEES' REPORT (CONTINUED) FOR THE YEAR ENDED 31 DECEMBER 2022** ## **Plans for future periods** Our priority areas for 2023 are: ## _**Reducing diagnostic delay**_ - Embed _Champions in Primary Care_ - Publish landscaping reviews on axial SpA in dermatology, gastroenterology, ophthalmology and radiology and develop educational tools for these specialities - Publish reports on the work of the 19 _Aspiring to Excellence_ sites in reducing time to diagnosis - Promote an endorsement campaign to encourage NHS organisations to support the implementation of _Act on Axial SpA_ - Continue to implement the _Act on Axial SpA_ public awareness raising campaign across online media and PR including the use of out of home advertising - Embed a new audit tool on time to diagnosis and publish our first report ## _**Supporting the NHS to improve axial SpA care**_ - Support the three cohorts of _Aspiring to Excellence_ - Begin work to develop a gold standard approach to treatment, long-term care and self-management - Continue to capacitate rheumatology departments to provide supported self-management through co-designed sessions and an e-library of resources - Make preparations to hold the first national quality improvement conference in axial Spa in 2024 - Publish a set of patient quality standards ## **Supporting people affected by axial SpA (including self-management)** - Seek to maintain our information and support our services at the current level - Continue developing free-to-access self-management resources - Launch the first phase of an E-learning programme - Publish new research into issues faced in relation to sex, gender and gender identity - Continue to support our branch network and promote their services. Page 18 **NATIONAL AXIAL SPONDYLOARTHRITIS SOCIETY** ## **TRUSTEES' REPORT (CONTINUED) FOR THE YEAR ENDED 31 DECEMBER 2022** ## **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 (United Kingdom Generally Accepted Accounting Practice). The law applicable to charities in England & Wales and Scotland requires the Trustees to prepare financial statements for each financial year which give a true and fair view of the state of affairs of the Charity and of its incoming resources and application of resources, including its income and expenditure, for that period. In preparing these financial statements, the Trustees are required to: - select suitable accounting policies and then apply them consistently - observe the methods and principles of the Charities SORP (FRS 102) - make judgements and accounting estimates that are reasonable and prudent - state whether applicable UK Accounting Standards (FRS 102) have been followed, subject to any material departures disclosed and explained in the financial statements - prepare the financial statements on the going concern basis unless it is inappropriate to presume that the 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 to ensure that the financial statements comply with the Charities Act 2011, the Charity (Accounts and Reports) Regulations 2008, the Charities and Trustee Investment (Scotland) Act 2005, the Charities Accounts (Scotland) Regulations 2006 (as amended) and the provisions of the Memorandum of Association. 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. ## **Disclosure of information to auditors** Each of the persons who are Trustees at 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 to have been taken as a Trustee in order to be aware of any relevant audit information and to establish that the charity's auditors are aware of that information. ## **Auditors** The auditors, BKL Audit LLP, have indicated their willingness to 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: Rajeevendra Kumar Mahapatra Date: 07/08/2023 Page 19 **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 Spondyloarthritis Society (the 'Charity') for the year ended 31 December 2022 which comprise the Statement of financial activities, the Balance sheet, the Statement of cash flows and the related notes, including a summary of significant accounting policies. The financial reporting framework that has been applied in their preparation is applicable law and United Kingdom Accounting Standards, including Financial Reporting Standard 102 'The Financial Reporting Standard applicable in the UK and Republic of Ireland' (United Kingdom Generally Accepted Accounting Practice). In our opinion the financial statements: - give a true and fair view of the state of the Charity's affairs as at 31 December 2022 and of its incoming resources and application of resources, including its income and expenditure for the year then ended - have been properly prepared in accordance with United Kingdom Generally Accepted Accounting Practice, and - have been prepared in accordance with Accounting and Reporting by Charities preparing their accounts in accordance with the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS 102) and in other respects the requirements of the Charities Act 2011. ## **Basis for opinion** We conducted our audit in accordance with International Standards on Auditing (UK) (ISAs (UK)) and applicable law. Our responsibilities under those standards are further described in the 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 evidence we have obtained is sufficient and appropriate to provide a basis for our opinion. ## **Conclusions relating to going concern** In auditing the financial statements, we have concluded that the Trustees' use of the going concern basis of accounting in the preparation of the financial statements is appropriate. Based on the work we have performed, we have not identified any material uncertainties relating to events or conditions that, individually or collectively, may cast significant doubt on the charity's ability to continue as a going concern for a period of at least twelve months from when the financial statements are authorised for issue. Our responsibilities and the responsibilities of the Trustees with respect to going concern are described in the relevant sections of this report. Page 20 **NATIONAL AXIAL SPONDYLOARTHRITIS SOCIETY** ## **INDEPENDENT AUDITORS' REPORT TO THE MEMBERS OF NATIONAL AXIAL SPONDYLOARTHRITIS SOCIETY (CONTINUED)** ## **Other information** The other information comprises the information included in the Annual report other than the financial statements and our Auditors' report thereon. The Trustees are responsible for the other information contained within the Annual report. Our opinion on the financial statements does not cover the other information and, except to the extent otherwise explicitly stated in our report, we do not express any form of assurance conclusion thereon. Our responsibility is to read the other information and, in doing so, consider whether the other information is materially inconsistent with the financial statements or our knowledge obtained in the course of the audit, or otherwise appears to be materially misstated. If we identify such material inconsistencies or apparent material misstatements, we are required to determine whether this gives rise to a material misstatement in the financial statements themselves. If, based on the work we have performed, we conclude that there is a material misstatement of this other information, we are required to report that fact. We have nothing to report in this regard. ## **Opinion on other matters prescribed by the Companies Act 2006** In our opinion, based on the work undertaken in the course of the audit: - the information given in the Trustees' Report for the financial year for which the financial statements are prepared is consistent with the financial statements - the Trustees' Report has been prepared in accordance with applicable legal requirements. ## **Matters on which we are required to report by exception** In the light of our knowledge and understanding of the Charity and its environment obtained in the course of the audit, we have not identified material misstatements in the Trustees' Report. We have nothing to report in respect of the following matters in relation to which Companies Act 2006 and the Charities Accounts (Scotland) Regulations 2006 (as amended) require us to report to you if, in our opinion: - adequate accounting records have not been kept, or returns adequate for our audit have not been received from branches not visited by us, or - the financial statements are not in agreement with the accounting records and returns, or - certain disclosures of Trustees' remuneration specified by law are not made, or - we have not received all the information and explanations we require for our audit, or - the Trustees were not entitled to prepare the financial statements in accordance with the small companies regime and take advantage of the small companies' exemptions in preparing the Trustees' Report and from the requirement to prepare a Strategic Report. Page 21 **NATIONAL AXIAL SPONDYLOARTHRITIS SOCIETY** ## **INDEPENDENT AUDITORS' REPORT TO THE MEMBERS OF NATIONAL AXIAL SPONDYLOARTHRITIS SOCIETY (CONTINUED)** ## **Responsibilities of trustees** As explained more fully in the Trustees' responsibilities statement, the Trustees (who are also the directors of the charitable company for the purposes of company law) are responsible for the preparation of the financial statements and for such internal control as the Trustees determine is necessary to enable the preparation of financial statements that are free from material misstatement, whether due to fraud or error. In preparing the financial statements, the Trustees are responsible for assessing the Charity's ability to continue as a going concern, disclosing, as applicable, matters related to going concern and using the going concern basis of accounting unless the Trustees either intend to liquidate the Charity or to cease operations, or have no realistic alternative but to do so. ## **Auditors' responsibilities for the audit of the financial statements** We have been appointed as auditor under section 44(1)(c) of the Charities and Trustee Investment (Scotland) Act 2005 and under the Companies Act 2006 and report in accordance with the Act and relevant regulations made or having effect thereunder. Our objectives are to obtain reasonable assurance about whether the financial statements as a whole are free from material misstatement, whether due to fraud or error, and to issue an Auditors' report that includes our opinion. Reasonable assurance is a high level of assurance, but is not a guarantee that an audit conducted in accordance with ISAs (UK) will always detect a material misstatement when it exists. Misstatements can arise from fraud or error and are considered material if, individually or in the aggregate, they could reasonably be expected to influence the economic decisions of users taken on the basis of these financial statements. Irregularities, including fraud, are instances of non-compliance with laws and regulations. We design procedures in line with our responsibilities, outlined above, to detect material misstatements in respect of irregularities, including fraud. The extent to which our procedures are capable of detecting irregularities, including fraud is detailed below: - Enquiring of management around actual and potential litigation and claims - Reviewing board meeting minutes of meetings of those charged with governance - Reviewing financial statement disclosures and testing to supporting documentation to assess compliance with applicable laws and regulations - Performing audit work over the risk of management override of controls, including testing of journal entries and other adjustments for appropriateness, evaluating the business rationale of significant transactions outside the normal course of business and reviewing accounting estimates for bias. As part of an audit in accordance with ISAs (UK), we exercise professional judgement and maintain professional scepticism throughout the audit. We also: - Identify and assess the risks of material misstatement of the financial statements, whether due to fraud or error, design and perform audit procedures responsive to those risks, and obtain audit evidence that is sufficient and appropriate to provide a basis for our opinion. The risk of not detecting a material misstatement resulting from fraud is higher than for one resulting from error, as fraud may involve collusion, forgery, intentional omissions, misrepresentations, or the override of internal control - Obtain an understanding of internal control relevant to the audit in order to design audit procedures that are appropriate in the circumstances, but not for the purpose of expressing an opinion of the effectiveness of the charity's internal control - Evaluate the appropriateness of accounting policies used and the reasonableness of accounting estimates and related disclosures made by the Trustees - Conclude on the appropriateness of the Trustees' use of the going concern basis of accounting and, based on the audit evidence obtained, whether a material uncertainty exists related to events or conditions that Page 22 **NATIONAL AXIAL SPONDYLOARTHRITIS SOCIETY** ## **INDEPENDENT AUDITORS' REPORT TO THE MEMBERS OF NATIONAL AXIAL SPONDYLOARTHRITIS SOCIETY (CONTINUED)** may cast significant doubt on the charity's ability to continue as a going concern. If we conclude that a material uncertainty exists, we are required to draw attention in our Auditors' Report to the related disclosures in the financial statements or, if such disclosures are inadequate, to modify our opinion. Our conclusions are based on the audit evidence obtained up to the date of our Auditors' Report. However, future events or conditions may cause the charity to cease to continue as a going concern. - Evaluate the overall presentation, structure and content of the financial statements, including the disclosures, and whether the financial statements represent the underlying transactions and events in a manner that achieves fair presentation We communicate with those charged with governance regarding, among other matters, the planned scope and timing of the audit and significant audit findings, including any significant deficiencies in internal control that we identify during our audit. A further description of our responsibilities for the audit of the financial statements is located on the Financial Reporting Council's website at: www.frc.org.uk/auditorsresponsibilities. This description forms part of our Auditors' report. ## **Use of our report** This report is made solely to the Charity's trustees, as a body, in accordance with Chapter 3 of Part 16 of the Companies Act 2006, and to the Charity's shareholders, as a body, in accordance with regulation 10 of the Charities Accounts (Scotland) Regulations 2006. Our audit work has been undertaken so that we might state to the Charity's trustees those matters we are required to state to them in an Auditors' report and for no other purpose. To the fullest extent permitted by law, we do not accept or assume responsibility to anyone other than the Charity and its trustees, as a body, for our audit work, for this report, or for the opinions we have formed. Page 23 ## **NATIONAL AXIAL SPONDYLOARTHRITIS SOCIETY** ## **INDEPENDENT AUDITORS' REPORT TO THE MEMBERS OF NATIONAL AXIAL SPONDYLOARTHRITIS SOCIETY (CONTINUED)** ## BKL Audit LLP ## **BKL Audit LLP** 35 Ballards Lane London N3 1XW ## Date: 08/08/2023 BKL Audit LLP are eligible to act as auditors in terms of section 1212 of the Companies Act 2006. Page 24 ## NATIONAL AXIAL SPONDYLOARTHRITIS SOCIETY ## STATEMENT OF FINANCIAL ACTIVITIES FOR THE YEAR ENDED 31 DECEMBER 2022 |||**Restricted**|**Restricted**|||| |---|---|---|---|---|---|---| |||**funds**
**Branches**|**funds -All**
**other**|**Unrestricted**
**funds**|**Total**
**funds**|_Ttal_
_fnds_| |||**2022**|**2022**|**2022**|**2022**|_2021_| ||**Note**|£|£|£|£|£| |**Income from:**||||||| |Donations and||||||| |legacies|3|**109,721**|**450,824**|**319,120**|**879,665**|_1,030,334_| |Other trading activities|4|**5,296**|**221**|**106,996**|**112,513**|_116,088_| |Investments|5|||**29,116**|**29,116**|_25,029_| |Other income|6|**3,082**||**2,148**|**5,230**|_11,017_| |**Total income**||**118,099**|**451,045**|**457,380**|**1,026,524**|_1,182,468_| |**Expenditure on:**||||||| |Raising funds|7|**355**||**197,057**|**197,412**|_128,771_| |Charitable activities|9|**126,688**|**633,731**|**560,915**|**1,321,334**|_1,009,331_| |**Total expenditure**||**127,043**|**633,731**|**757,972**|**1,518,746**|_1,138,102_| |**Net**||||||| |**(expenditure)/incom**||||||| |**e before net**||||||| |**(losses)/gains on**||||||| |**investments**||**(8,944)**|**(182,686)**|**(300,592)**|**(492,222)**|_44,366_| |Net (losses)/gains on||||||| |investments||||**(50,000)**|**(50,000)**|_24,900_| |**Net**||||||| |**(expenditure)/incom**||||||| |**e**||**(8,944)**|**(182,686)**|**(350,592)**|**(542,222)**|_69,266_| |Transfers between||||||| |funds|19|**(24,558)**|**6,951**|**17,607**||| |**Net movement in**||||||| |**funds**||**(33,502)**|**(175,735)**|**(332,985)**|**(542,222)**|_69,266_| |**Reconciliation of**||||||| |**funds:**||||||| |Total funds brought
frard||**298,771**|**319,442**|**1,103,462**|**1,721,675**|_1,652,409_| |Net movement in||||||| |funds||**(33,502)**|**(175,735)**|**(332,985)**|**(542,222)**|_69,266_| |**Total funds carried**||||||| |**forward**||**265,269**|**143,707**|**770,477**|**1,179,453**|_1,721,675_| The Statement of Financial Activities includes all gains and losses recognised in the year. The notes on pages 28 to 50 form part of these financial statements. Page 25 **NATIONAL AXIAL SPONDYLOARTHRITIS SOCIETY** ## **BALANCE SHEET AS AT 31 DECEMBER 2022** ||||**2022**||_2021_| |---|---|---|---|---|---| ||**Note**||£||£| |**Fixed assets**|||||| |Tangible assets|14||**332**||_6,619_| |Investments|16||**27,000**||_54,000_| |Investment property|15||**650,000**||_700,000_| ||||**677,332**||_760,619_| |**Current assets**|||||| |Debtors|17|**42,464**||_115,061_|| |Cash at bank and in hand||**656,510**||_894,766_|| |||**698,974**||_1,009,827_|| |Creditors: amounts falling due within one
year|18|**(196,853)**||_(8,771)_|| |**Net current assets**|||**502,121**||_961,056_| |**Total assets less current liabilities**|||**1,179,453**||_1,721,675_| |**Total net assets**|||**1,179,453**||_1,721,675_| |**Charity funds**|||||| |Restricted funds - Branches|19||**265,269**||_298,771_| |Restricted funds -All other|19||**143,707**||_319,442_| |Unrestricted funds|19||**770,477**||_1,103,462_| |**Total funds**|||**1,179,453**||_1,721,675_| The financial statements were approved and authorised for issue by the Trustees on 8 August 2023 and signed on their behalf by: ## **Rajeevendra Kumar Mahapatra** (Chair of Trustees) The notes on pages 28 to 50 form part of these financial statements. Page 26 NATIONAL AXIAL SPONDYLOARTHRITIS SOCIETY STATEMENT OF CASH FLOWS FOR THE YEAR ENDED 31 DECEMBER 2022 2022 2021 Cash flows from operatlng actlvltles Nel cash used in operating activities 1267,3501 (117.374) Cash flows from Investlng actlvltles Dividends, interests and rents from investments Proceeds from the sale of tangible fixed assets Purchase of tangible fixed assets 28,209 885 25,029 (1,318) Net cash provided by investing activities 29,094 23,711 Change in cash and cash equivalents in the year Cash and cash equivalents at the beginning of the year 1238,2561 894,766 193.6631 988,429 Cash and cash equivalents at the end of the year 656,510 894, 766 The notes on pages 28 to 50 form part of these financial statements Page 27 NATIONAL AXIAL SPONDYLOARTHRITIS SOCIETY NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2022 General information The National Axial Spondyloarthrilis Society is a CIO incorporated under articles of association dated 29th April 2019 in England & Wales with charity registration number 1183175. 11 was subsequently registered with the Scollish Charity Regulator on 19th November 2019 with Scottish charity registration number SC049746. 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 to charities preparing their accounts in accordance with the Financial Reporting Standard applicable in the UK and Republic of Ireland IFRS 1021 leffective 1 January 20191, the Financial Reporting Standard applicable In the UK and Republic of Ireland IFRS 1021 and the Charities Act 2011, the Charities and Trustee Investment (Scollandl Act 2005 and the Charities Accounts Iscotlandl Regulations 2006 las amended). National Axial Spondyloarthritis Society meets the definition of a public benefit entity under FRS 102. Assets and liabilities are Initially recognised al historical cost or transaction value unless otherwise stated in the relevant accounting policy. 2.2 Income All income is recognised once the Charity has entillemenl to the income, it is probable that the income will be received and the amoLJnt of income receivable can be measured reliably. The recognition 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 lo a legacy exists when the Charity has sufficient evidence that a gift has been left lo them Ilhrough knowledge of the existence of a valid will and the death of the benefactor) and the executor is satisfied that the propety in question will not be required to satisfy claims in the estate. Receipt of a legacy mLJSt be recognised when it is probable that il will be received and the fair value of the amount re￿1Vable, 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 but not expended during the period is shown in the relevant funds on the Balance sheet. Where income is received in advance of entitlement of receipt, its recognition is deferred and included in creditors as deferred income. Where entitlement occurs before income is received, the income is accrued. Income tax recoverable in relation to investment income is recognised at the lime the investment income is receivable. Other income is recognised in the period in which it is receivable and to the extent the goods have been provided or on completion of the servi￿. Page 28 NATIONAL AXIAL SPONDYLOARTHRITIS SOCIETY NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2022 Accounting policies Icontinuedl 2.3 Expenditure Expenditure is recognised On￿ there is a legal or constructive obligation lo transfer economic benefit lo a third party, il is probable that a transfer of economic benefits will be required in settlement and the amount of the obligation can be measured reliably. Expenditure is classified by activity. 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 lo that activity. Shared costs which contribute to more than one activity and support costs which are not attributable to a single activity are apportioned be￿een those activities on a basis consislenl with the use of resources. Central staff costs are 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 its charitable purposes and includes costs of all fvndraising activities events and non-charitable trading. Expenditure on charitable activities is incurred on directly 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 ex￿pt in those cases where the offer is conditional, such grants being recognised as expenditure when the conditions allaching are fulfilled. Grants offered subject to conditions which have not been met al the year end are noted as commitment, bul not accrued as expenditure. All expenditure is inclusive of irrecoverable VAT. 2.4 Government grants Government grants relating lo tangible fixed assets are treated as deferred income and released lo the Slalement of financial activities over the expected useful lives of the assets concerned. Other grants are credited to the Slalement of financial activities as the related expenditure is incurred. 2.5 Interest receivable Interest on funds held on deposit is included when receivable and the amount can be measured reliably by the Charity,. this is normally upon notification of the interest paid or payable by the institution with whom the funds are deposited. 2.6 Tangible fixed assets and depreciation Tangible fixed assets costing £1,000 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 at cost less accumulated depreciation and any accumulated impairment losses. All costs incurred to bring a tangible fixed asset into ils intended working condition should be included in the measurement of cost. Page 29 NATIONAL AXIAL SPONDYLOARTHRITIS SOCIETY NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2022 Accounting policies Icontinuedl 2.6 Tangible fixed assets and depreciation Icontinuedl Depreciation is charged so as to allocate the cost of tangible fixed assets less their residual value over their eslimaled useful lives, using the straighl-line method. Depreciation is provided on the following basis.. offi￿ equipment 25Qh Slraighl Line 2.7 Investments Fixed asset investments are a form of financial instrument and are initially recognised al their transaction cost and subsequently measured at fair value al the Balance sheet dale, unless the value cannot be measured reliably in which case il is measured at cost less impairment. Investment gains and losses, whether realised or unrealised, are combined and presented as 'GainsllLossesl on inveslmenls, in the Slalement of financial aclivilies. Investments held as fixed assets are shown al cost less provision for impairment. 2.8 Debtors Trade and other debtors are recognised at the selllemenl amount after any trade discount offered. Prepayments are valued al the amount prepaid net of any trade discounts due. 2.9 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. 2.10 Liabilities and provisions Liabilities are recognised when there is an obligation al the Balan￿ sheet date as a result of a past event, il is probable that a transfer of economic benefit will be required in selllemenl, and the amount of the settlement can be estimated reliably. Liabilities are recognised al the amount that the Charity anticipates il will pay to settle the debt or the amount il has re￿iVed as advanced payments for the goods or services it musl provide. Provisions are measured al the best estimate of the amounts required to 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 al the pre-tax discount rale that reflects the risks specific to the liability. The unwinding of the discount is recognised in the Slalement of financial activities as a finan￿ cost. 2.11 Financial instruments The Charity only has financial assets and financial liabilities of a kind that qualify as basic financial inslrumenls. Basic financial instruments are initially recognised at transaction value and subsequently measured al their settlement value with the exception of bank loans which are subsequently measured al amortised cost using the effective interest method. Page 30 NATIONAL AXIAL SPONDYLOARTHRITIS SOCIETY NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2022 Accounting policies Icontinuedl 2.12 Fund accounting General funds are unrestricted funds which are available for use al the discretion of the Trustees in furtherance of the general objectives of the Charity and which have not been designated for other purposes. Restricted fvnds are funds which are lo be used in accordance with specific restrictions imposed by donors or which have been raised by the Charity for particular purposes. The costs of raising and administering such funds are charged against the specific fund. The aim and use of each restricted fund is sel out in the notes lo the financial slatemenls. Due to the significant nature of branches on the accounts, the Reslricled branch fund is displayed separately throughout the accounts. Investment income, gains and losses are allocated to the appropriate fvnd. Income from donations and legacies Restricted Restricted Funds - funds - All Unrestricted Branches other funds 2022 2022 2022 Total funds 2022 Donations Legacies Charity grants Subscriptions 6,822 37,241 112,084 72,657 54,346 80,033 156.147 72.657 467,929 182.932 413,583 102,899 109,721 450,824 319,120 879.665 RestriGled Funds- Branches 2021 Restricted funds- All Unrestricted other funds 2021 2021 Total funds 2027 Donations 2,887 51,OT4 172, 534 154, 563 65, 950 84, 085 226,495 154.563 Legacies Charity grants sub￿riptiONs 424,381 490,331 158.945 74,860 77,747 475,455 477, 132 1,030.334 Charity grants includes Pharmaceutical Industry grants of £466,53812021." £485,331) and other grants of £1,39312021. £5,000>. Page 31 ## **NATIONAL AXIAL SPONDYLOARTHRITIS SOCIETY** ## **NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2022** ## **4. Income from other trading activities** ## **Income from fundraising events** ||**Restricted**|||| |---|---|---|---|---| ||**Funds**|**Restricted**|**Unrestricted**|**Total**| ||**Branches**|**funds**|**funds**|**funds**| ||**2022**|**2022**|**2022**|**2022**| ||£|£|£|£| |Fundraising events|5,296|221|106,996|**112,513**| |||_Restcted_||| |||_Funds-_|_Unrestricted_|_Total_| |||_Brnches_|_fnds_|_funds_| |||_2021_|_2021_|_2021_| |||£|£|£| |Fundraising events||_2,876_|_113,212_|_116,088_| ## **5. Investment income** ||**Unrestricted**|**Total**| |---|---|---| ||**funds**|**funds**| ||**2022**|**2022**| ||**£**|**£**| |Rental income|28,023|**28,023**| |Bank Interest|186|**186**| |Profit on disposal of fixed assets|907|**907**| ||29,116|**29,116**| ||_Unrestcted_
_fnds_|_Ttal_
_funds_| ||_2021_|_2021_| ||**£**|**£**| |Rental income|_24,793_|_24,793_| |Bank Interest|_236_|_236_| ||_25,029_|_25,029_| Page 32 NATIONAL AXIAL SPONDYLOARTHRITIS SOCIETY NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2022 other incoming resources Restricted Funds - Unrestricted Branches funds 2022 2022 Total funds 2022 Other Income 3,082 2,148 5,230 Restricted Funds- Unrestricted Branches funds 2021 2021 Total funds 2027 other Income 2,884 8, 133 11.017 Expenditure on raising funds Fundraising trading expenses Restricted funds - Unrestricted Branches funds 2022 2022 Total funds 2022 Expenditure on raising donations and legacies Staging fundraising events Fundraising for membership staff remuneration 15,292 7,936 1,529 118,368 26,442 15.292 8,291 1.529 118.368 26.442 355 General fundraising expenditure Allocated centrally incurred fundraising and governance costs 27,490 27,490 355 197,057 197.412 Page 33 NATIONAL AXIAL SPONDYLOARTHRITIS SOCIETY NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2022 Expenditure on raising funds (continued) Fundraising trading expenses {continuedl Unrestricted funds 2021 Total funds 2021 Expenditure on raising donations and legacies Staging fundraising events Fundraising for membership staff remuneration General fundraising expenditure Allocated centrally incurred fundraising and govemanee costs 8,571 7,567 2,164 71,372 16,682 22,415 8,571 7,567 2.164 71,372 16,682 22,415 128, 771 128. 771 Anatysis of grants Grants to Institutions 2022 Total funds 2022 GTrnÈs lo 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 34 NATIONAL AXIAL SPONDYLOARTHRITIS SOCIETY NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2022 Analysis of expenditure on charitable activities Summary by fund type Restricted Restricted funds - funds - All Unrestricted Branches other funds 2022 2022 2022 Total 2022 Every Patient Every Time A Connected and Supportive Community Empower, Inform and Inspire 492,734 87,018 53,979 180,078 209,034 171,803 672.812 422,740 225.782 126,688 126,688 633,731 560,915 1,321.334 Restricted Funds- Branches 2021 Restricted funds- All Unrestricted other funds 2021 2021 Total 2027 Every Patient Every Time A Connected and Supportive Community Empower, Inform and Inspire 282,658 49,069 10,406 187,465 163,430 249,251 470, 123 279.551 67,052 259,657 67.052 342, 133 600, 146 1,009,331 10. Analysls of expendlture by actlvltles Actlvltles undertaken dlrectly 2022 Support costs 2022 Total funds 2022 Every Patient Every Time A Connected and Supportive Community Empower, Inform and Inspire 803,911 362,638 166,683 68,901 60,102 59,099 672,812 422.740 225.782 1,133,232 188,102 1,321,334 Page 35 NATIONAL AXIAL SPONDYLOARTHRITIS SOCIETY NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2022 10. Analysis of expenditure by activities Icontinuedl Activities undertaken directly 2021 Grant funding ol activities 2021 Support costs 2021 Total funds 2021 Every Patient Every Time A Conneeled and Supportive Community Empower, Inform and Inspire 369,045 211,304 199,015 45,358 250 55, 720 67,997 60, 642 470,123 279,551 259.657 779,364 45,608 184,359 1,009,331 Anatysis of direct costs Connected Every and Empower, Patient Supportive Inform and Every Time Community Inspire 2022 2022 2022 Total funds 2022 staff costs other staff costs Courier & distribution of materials Literature, brochures and Information Promotion of activities and materials Organising professional events External technical providers Attending professional events Branch ne￿Ork expenditure 212,784 5,301 928 36,750 8,855 62,057 247,874 29,362 162,848 1,000 4,123 25,432 21,472 21,075 135,682 268 1,389 16,073 2,364 511.314 6.569 6,440 78,255 32.691 83.132 258,781 29,362 126.688 10,907 126,688 603,911 362,838 166,683 1,133,232 Page 36 NATIONAL AXIAL SPONDYLOARTHRITIS SOCIETY NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2022 10. Analysis of expenditure by activities Icontinuedl Analysis of direct costs {continued} A Connected Ev8ry and Pa116nt Supportiv6 Every Time Community 2021 2021 Empower, Inform and Inspire 2021 Total funds 2021 Staff remuneration Travel Expenses Office costs Courier & distribution of materials Literature, brochures & information Hire of venues & facilities Third paty 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 2,167 584 77,806 38,250 75, 736 67,052 897 47T 1,703 35 3,483 67,052 369, 045 211,304 199,015 779,364 Anatysis of support Costs Connected Every and Empower, Patient Supportive Inform and Every Time Community Inspire 2022 2022 2022 Total funds 2022 Staff costs Depreciation Other staff costs 16,970 1,837 1,428 21,956 586 8,442 2,690 660 8,844 146 303 5,039 19,484 1,405 1,091 16,791 450 26,398 1,188 924 62,852 4.430 3.443 52,954 1,415 20.361 6.488 1,591 21,330 353 731 12,154 Premises costs 14,207 379 4,562 1,740 427 5,723 94 196 3,261 Travel & accomodation expenses IT and Communications Office costs 7,357 2,058 504 6,763 113 232 3,854 Conference costs InsLJrance, legal & professional other support costs Bank charges Governance costs 68,901 60,102 59,099 188.102 Page 37 NATIONAL AXIAL SPONDYLOARTHRITIS SOCIETY NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2022 10. Analysis of expenditure by activities Icontinuedl Analysis of support costs Icontinuedl A Conn8Ctgd Ev6ry and Pa116nt Supportiv6 Every Time Community 2021 2021 Empower, Inform and Inspire 2021 Total funds 2021 Staff costs Depreciation Other staff costs Premises costs Travel expenses IT and communications Office costs Conference costs Accountancy Insurance, legal & profession81 Other support costs Bank charges Governance costs 5, 825 1,905 12, 122 21,483 767 8,320 2,568 (3, 754) 1, 820 1,501 5, 825 1,429 9,092 16,201 575 6,247 1, 926 1, 801 1,365 3,378 13.858 291 6,015 7,489 1,389 8.839 15,751 559 6,068 1.872 1, 751 1,327 3,284 19, 139 4,723 30,053 53,435 1,901 20,629 6,366 (202J 4,512 8,163 13,858 962 20,820 388 2, 775 283 12,030 55, 720 67.997 60.642 184,359 11. Auditors. remuneration 2022 2021 Fees payable to the Charitys auditor ft)r the audit of the Charity's annual accounts 9,000 7.200 Fees payable lo the Charity's auditor in respect of.. All non-audil services not included above 3,000 2,400 Page 38 NATIONAL AXIAL SPONDYLOARTHRITIS SOCIETY NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2022 12. Staff costs 2022 2021 Wages and salaries Social security costs Contribution lo defined contribution pension schemes 462,676 46,171 65,319 401.585 39.457 95,673 574,166 536, 709 The average number of persons employed by the Charity during the year was as follows.. 2022 No. 2021 No. Employees 13 13 The number of employees whose employee benefits {excluding employer pension costs) exceeded £60,000 was.. 2022 No. 2021 No. In the band £100,001 - £110,000 Key management personnel consists of the CEO, Head of Communications and Fundraising, Head of Information and Support Services, Head of Policy and Health Services and the Finance and Administration Manager. The total employee remuneration and benefits of the key management personnel of the Charity were £332,88212021.' £290,325). 13. Trustees. remuneration and expensos During the year, no Trustees re￿iVed any remuneration or other benefits (2021- £NIL). During the year ended 31 December 2022, expenses tolalling £67.50 were reimbursed or paid directly to 2 Trustees f2021- £3￿ to 3 Trustees). These expenses were in relation to travel expenses. Page 39 **NATIONAL AXIAL SPONDYLOARTHRITIS SOCIETY** ## **NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2022** ## **14. Tangible fixed assets** ||**Office**| |---|---| ||**equipment**| ||**£**| |**Cost or valuation**|| |At 1 January 2022|**21,609**| |Disposals|**(3,536)**| |At 31 December 2022|**18,073**| |**Depreciation**|| |At 1 January 2022|**14,990**| |Charge for the year|**5,402**| |On disposals|**(2,651)**| |At 31 December 2022|**17,741**| |**Net book value**|| |At 31 December 2022|**332**| |_At 31 December 2021_|_6,619_| |**Investment propery**|| ||**Freehold**| ||**investment**| ||**propery**| |**Valuation**|| |At 1 January 2022|**700,000**| |Gain / (loss) on revaluation|**(50,000)**| |At 31 December 2022|**650,000**| ## **15. Investment property** Investment property comprises residential flats let. The fair value of the investment property has been arrived at by reference to market evidence of transaction prices for similar properties and informal valuations by a number of local estate agents. A formal valuation was made post the year end on an open market value basis. Page 40 NATIONAL AXIAL SPONDYLOARTHRITIS SOCIETY NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2022 16. Fixed asset investments Other fixed asset investments Cost or valuation At 1 January 2022 Disposals 54,000 127,000) At 31 December 2022 27.000 Net book value At 31 December 2022 27.000 At 31 Decembgr 2021 54,000 17. Debtors 2022 2027 Due wlthln one year Trade debtors Other debtors Prepayments and accrued income 8,840 24,655 8,969 23,622 85,361 6,078 42,464 115,061 18. Creditors: Amounts falling due within one year 2022 2021 Trade creditors Other laxalion and social security other creditors Accruals and deferred income 116,434 6,181 26,475 47,763 12,985 78.510 1.249 16,027 196,853 48, 711 Page 41 NATIONAL AXIAL SPONDYLOARTHRITIS SOCIETY NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2022 19. Statement of funds statement of funds - current year Balance at 31 Gainsl December {Lossesl 2022 Balance at 1 January 2022 Transfers inlout Income Expenditure Unrestricted funds General Funds all funds 1.103,462 457.380 1757.972) 17.607 150.0001 770.477 Restrlcted Funds- Branches Branches 298,771 118.099 1127.043) {24,5581 265.269 Page 42 NATIONAL AXIAL SPONDYLOARTHRITIS SOCIETY NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2022 19. Statement of funds (continued) Balance at 31 Gainsl December {Lossesl 2022 Balance at 1 January 2022 Transfers inlout Income Expenditure Restricted funds - All other Branch Development Fund Fergus Rogers Fund Aspiring lo Excellence Cimzia Select Programme Ophthalmology 4,592 1600) 4.000 7.992 2,052 2.052 149,638 115,938 223,3421 42,234 150 150 Gaslroenlerolo gy project Self Management Programme COVID-19 Gold Standard Delay to Diagnosis Good Boost 9,205 {8.350) 855 15,241 49,972 144,146) 21.067 120,584 165 200.838 9.752 27,600 2,000 1286.106) {9.917) 131,005) 15001 35.316 APPG NASS Voices Round Table Health Inequalities Members Day 3,922 1,993 11,900 517 3,493 11.900 18.459 26,486 1328) 129,437) 18.131 2,951 319,442 451.045 1633.731) 6,951 143.707 Total of funds 1.721,675 1.026.524 11,518.746) 150,0001 1,179.453 Page 43 NATIONAL AXIAL SPONDYLOARTHRITIS SOCIETY NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2022 19. Statement of funds (continued) Branch NeI￿Ork Funds The Branch Ne￿Ork Funds support the local activities of NASS Branches, which offer regular physiotherapy or hydrotherapy sessions led by qualified instructors. Each Branch raises ils funds and decides how lo ulilise them for specific aclivilies. Branch Develo ment Fund The Branch Development Fund is created through donations from local NASS Branches. It aims to ensure the establishment and promotion of all Branches, and il provides start-up grants lo new Branches and funds for ordering promotional materials such as posters and leaflets. Fe usRo ers Fund The Fergus Rogers Fund was established in memory of Fergus Rogers lo assist people with axial SpA in purchasing specific items that can improve their quality of life. 11 is used lo provide support for those in financial need lo obtain essential items recommended by their healthcare professionals. As to Excellen￿ Fund The Aspiring lo Excellence Fund supports a mulli-year quality improvement program lo transform healthcare for people with axial SpA. The fund facilitates strategic partnerships be￿een NASS, BRITSpA, and the NHS transformation unit, bringing together rheumatology teams and servi improvement experts. 11 is ulilised for various aclivilies, including recruitment lo the program, learning sessions, online coaching, podcasts, and the development of an audit tool lo track the lime lo diagnosis. O hlhalmolo l Gaslroenterolo Pro ect Fund The OphthalmologylGaslroenlerology Project Fund supports the Gold Standard time lo diagnosis program and ils efforts lo improve the identification and referral of suspected axial SpA in Ophthalmology and Gastroenterology. 11 fInan￿S the involvement of clinical associates from both specialities in gathering Intelligen￿ and understanding the current landscape. Additionally, the fvnd covers the development of educational materials, audits, posters, surveys, and policy reports. The Self-mana emenl Pro ramme The Self-management Fund covers the costs of NASS'S Supported Self-management Program, which equips people with axial SpA with the skills and tools to manage their symptoms confidently. 11 supports various aspects of the program, including online resources, self-management sessions, and regional events held in conjunction with local NHS rheumatology departments. Dela to Dia nosis- Gold Standard Fund The Delay to Diagnosis - Gold Standard Fund is ulilised to implement The Gold Standard Time to Diagnosis program for axial SpA. 11 supports various activities such as producing campaign impact reports, conducting economic analysis, delivering landscape reports, reviewing the use of MRI in diagnosis, and running public awareness campaigns. Page 44 NATIONAL AXIAL SPONDYLOARTHRITIS SOCIETY NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2022 19. Statement of funds (continued) Good Boost Fund The Good Boost Fund was re￿iVed from Innovate UK for the project'Transforming older adult disability through virtual, peer-led community rehabililalion., 11 fInan￿S the development of an online community for older adults with axial SpA. It covers staff salaries, plattorm development, and volunteer recruitment lo lead virtual groups. APPG All Part Parliamenla Grou for Axial S ond loarthritis Fund The APPG Fund is established to oversee the implementation of the National Institute for Health and Care Excellence INICEI guidelines for Spondyloarthritis and its Quality Standard. 11 supports the functioning of the parliamentary group. It is used to conduct meetings, national inquiries, and parfiamenlary re￿ptIOnS to engage with MPS on axial SpA NHS services. NASS Vol￿S The NASS Voices Fund supports regional events to facilitate interactions bel￿een local people with axial SpA and their rheumatology healthcare professionals. 11 helps cover the costs of venue payments and other expenses for organising these events. Round Table The Round Table Fund supports wider policy work and national discussions on axial SpA in the UK. Although there was no activity in 2022, the fund is carried forward lo continue ils purpose in 2023. Health In ualilies Fund The Health Inequalities Fund finances a qualitative study focusing on people's eXperIen￿S with axial SpA through the lens of sex, gender, and gender identity. 11 covers expenses related lo recruitment for focus groups and data collection. Members Da Fund The Members Day Fund facilitates the annual Members Day and AGM events held in different lownslcities across the UK. 11 covers the costs of organising these events, including venue arrangements, speaker fees, workshops, and other activities for attendees. Page 45 NATIONAL AXIAL SPONDYLOARTHRITIS SOCIETY NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2022 19. Statement of funds (continued) statement of funds - prior year Balance at 31 December 2021 Balance at 7 January 2021 Transfers in/out Gains/ fLossgs) Incom8 Exp8nditure Unrestricted funds General Funds all funds 1,172,015 623,506 (725,272J 8,313 24,900 1, 103,462 Restrlcted Funds- Branches Branches 304,487 83,507 (80,910) (8,313) 298. 771 Page 46 NATIONAL AXIAL SPONDYLOARTHRITIS SOCIETY NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2022 19. Statement of funds (continued) Balance at 31 December 2021 BalanGe at 7 January 2021 Transfers in/out Gains/ (Losses) Incom8 Expenditure Restricted funds - All other Branch Development Fund Fergus Rogers Fund Aspiring lo Excellence Cimzia Select Programme Ophthalmology 5, 127 (535) 4,592 2,052 2,052 123, 620 134,531 (108,513) 149,638 150 150 Gaslroenlerolo gy project Self Management Programme COVID-19 Gold Standard Delay to Diagnosis Good Boost 9,205 9,205 13,962 3,541 32,240 (30,961) (3,541) 15,241 1,458 11,T55 251,722 4,662 28,000 12,400 11,9(K) f132,596J (16,252) (24,078) (10.407) 120.584 165 APPG NASS Voices Round Table Health Inequalities Members Day 3,922 1,993 11,900 170,870 475,455 (326,883J 319.442 Totsl offunds 1.647,372 7, 182.468 (1, 733,065J 24,900 I, T21,675 Page 47 NATIONAL AXIAL SPONDYLOARTHRITIS SOCIETY NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2022 20. Summary offunds Summary offunds - current year Balance at 31 Gainsl December {Lossesl 2022 Balance at 1 January 2022 Transfers inlout Income Expenditure General funds 1,103,462 457,380 757,9721 17,607 50,0001 770,477 Reslricled funds- Branche5 Reslricled fvnds- All other 298,771 118.099 1127.043) {24.5581 265.269 319,442 451.045 1633.731) 6.951 143.707 1,721,675 1,026,524 11,518,746> 50,0001 1,179,453 Summary offunds - prior year Balan￿ at 31 December 2021 BalanGe at l January 2021 Transfers in/out Gains/ (Losses) Income Expenditure General funds 1,172,015 623,506 (725,272) 8,313 24,900 1, 103,462 Reslricled funds- Branches Reslricled funds- All other 304,481 83,507 (80,910) (8,313) 298, 711 1TO,870 475.455 f326,883J 319,442 1.647,372 1, 182,468 (1, 133,065) 24,900 1,721,675 Page 48 NATIONAL AXIAL SPONDYLOARTHRITIS SOCIETY NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2022 21. Analysis of net assets between funds Analysis of net assets between funds - current year Restricted Restricted Funds- funds - All Unrestricted Branches other funds 2022 2022 2022 Total funds 2022 Tangible fixed assets Fixed asset investments Investment property Current assets Creditors due within one year 332 27,000 650,000 289,998 1196,8531 332 27.000 650,000 698.974 (196.8531 265,269 143,707 Total 265,269 143,707 770,477 1,179,453 Analysis of net assets between funds - prior year Restricted funds- Branches 2021 Restricted funds- All Unreslricled other funds 2021 2021 Total funds 2021 Tangible fixed assets Fixed asset investments 6,619 54, 000 700, 000 391,614 (48, T71) 6,619 54.000 Investment property Current assets 700,000 1,009.827 (48, 771) 298,777 319.442 Creditors due within one year Total 298,771 319,442 1,103,462 1,721,675 Page 49 NATIONAL AXIAL SPONDYLOARTHRITIS SOCIETY ## **NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2022** ## **22. Reconciliation of net movement in funds to net cash flow from operating activities** |||**2022**|_2021_| |---|---|---|---| |||£|£| |Net income/expenditure for the year (as per Statement of Financial|||| |Activities)||**(542,222)**|_69,266_| |**Adjustments for:**|||| |Depreciation charges||**5,402**|_5,402_| |(Gains)/losses on investments||**77,000**|_(24,900)_| |Dividends, interests and rents from investments||**(28,209)**|_(25,029)_| |Decrease in debtors||**72,597**|_13,018_| |lncrease/(decrease) in creditors||**148,082**|_(155,131)_| |**Net cash used in operating activities**||**(267,350)**|_(117,374_| |**Analysis of cash and cash equivalents**|||| |||**2022**|_2021_| |||£|£| |Cash in hand||**656,510**|_894,766_| |**Total cash and cash equivalents**||**656,510**|_894,766_| |**Analysis of changes in net debt**|||| ||**At 1**||**At 31**| ||**January**||**December**| ||**2022**|**Cash flows**|**2022**| ||**£**|**£**|**£**| |Cash at bank and in hand|**894,766**|**(238,256)**|**656,510**| ||**894,766**|**(238,256)**|**656,510**| ## **23. Analysis of cash and cash equivalents** ## **24. Analysis of changes in net debt** ## **25. Subsequent Events** **Subsequent to the Financial Year End the Charity took out a £300,000 mortgage from Charity Bank secured on the investment properties owned by the charity. The loan has a term of 25 years.** Page 50