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National Rheumatoid Arthritis Society

Strategic Plan2019-2022

NATIONAL RHEUMATOID ARTHRITIS SOCIETY

FOREWORD

Ailsa Bosworth MBE, Chief Executive . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3

NRAS CHIEF MEDICAL ADVISOR

Peter C . Taylor MA, PhD, FRCP, FRCPE

Norman Collisson Professor of Musculoskeletal SciencesHead of Clinical Sciences, Botnar Research CentreNuffield Department of Orthopaedics, Rheumatology and Musculoskeletal Sciences, University of Oxford . . . . . . . . 4

GALLERY . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5

Parliamentary Event to celebrate our JIA Family fundraisers

ABOUT THE NATIONAL RHEUMATOID ARTHRITIS SOCIETY . . . . . . . . . . . . . . . . . 6

OUR CORE VALUES . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8

PEOPLE USING OUR SERVICES SAY . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 9

STRATEGIC AIMS . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .10

Raising Awareness . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .10

Importance of Self Management . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .11

Importance of High Quality, Accessible Information . . . . . . . . . . . . . . . . . . . . . . . . .12

Influencing and Campaigning . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .13

Developing Support for Children and Young People . . . . . . . . . . . . . . . . . . . . . . . . . .14

FINANCIAL INFORMATION . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .16

OUR PRINCIPAL ACTIVITIES . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .18

Contents

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STRATEGIC PLAN 2019-2022

ForewordAilsa Bosworth MBE Chief Executive

“ Technology and real-world evidence will enhance our ability to deliver innovative programmes to improve quality of life and outcomes for those with RA and JIA”

In October 2018 we celebrated the charity’s 17th birthday and as we publish our next three-year strategy at the beginning of 2019, my foreword reflects the pride I have in the NRAS team, the organisation, our members, volunteers and partners, and what we have jointly achieved . I’m also full of hope and optimism for the exciting new projects, services and resources we shall be bringing to fruition by the end of 2021 .

It’s also tinged with a mix of other feelings for me as I shall be standing down as Chief Executive with effect from June 2019 and inducting a new CEO into the role between July and September 2019 . Handing over the reins of the organisation I founded in 2001 won’t be the easiest thing I’ve ever done, but we have solid foundations - a strong, committed and passionate team of people to take the organisation forward and award-winning, innovative resources and services which all contribute to our aim to improve the lives and outcomes of all those living with and affected by Rheumatoid Arthritis and Juvenile Idiopathic Arthritis . I am sure that NRAS will go on to do so much more in future .

I will not be bowing out completely – I still feel I have more to give and more to do . I shall be taking on the role of ‘National Patient Champion’, and working part time, to support NRAS in a variety of different ways such that my experience as CEO and as a long-term patient can continue to contribute and be of value . I will also be contributing to the work of EULAR (European League Against Rheumatism) and embarking on an exciting research project relating to self-management with a group of health professionals from all over Europe in 2019 .

The next three years is going to be an exciting period, as we shall be working with key strategic partners to deliver transformational change to some of the key resources we provide . Technology and real-world evidence will enhance our ability to deliver innovative programmes to improve quality of life and outcomes for those with RA and JIA . We shall be working with rheumatology health professionals to demonstrate our value in an evidence-based way, which is unique in our field . We go to great lengths to ensure the highest quality in the work we do and the content we create, and this is being recognised by the number of organisations seeking to licence NRAS content and include it in models and pathways of care, and in the interest shown by individuals and patient organisations outside the UK .

Achieving growth in income over the next three years will be essential to enable us to achieve what we have set out to do in this plan . We have a strong and expert fundraising team who will be equal to the challenge and who have at the heart of their strategy, the importance of the support we give to our donors, supporters and members . In a fragmented digital world, building relationships with existing and new donors as well as our loyal Members and Volunteers is extremely important to us and we shall continue to invest in providing them with a consistent, positive experience in appreciation of everything they do to support us .

As we launch this plan in January 2019, my warmest wishes and heartfelt thanks must go to all who have, over the last 17 years, helped me to build an extraordinary organisation .

Ailsa Bosworth MBE Chief Executive

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NRAS Chief Medical AdvisorPeter C . Taylor MA, PhD, FRCP, FRCPE Norman Collisson Professor of Musculoskeletal SciencesHead of Clinical Sciences, Botnar Research CentreNuffield Department of Orthopaedics, Rheumatology and Musculoskeletal Sciences, University of Oxford

“ The art of rheumatology and compassionate care needs to be exercised alongside the science.”

The word “rheumatology” derives the Greek root “rheum”, meaning “flow .” Thus rheumatology is the study of “that which flows” . This word was first ascribed to “rheumatism” and so-called “rheumatic disease” because of the nature of reported symptoms in certain of the “rheumatic diseases” which seemed to spread, or flow, within a patient’s body . And the word “flow” might also be applied to the evolution and revolution in thinking about this family of conditions, particularly Rheumatoid Arthritis (RA) and Juvenile Idiopathic Arthritis (JIA), that we have witnessed over the last twenty years . It seems extraordinary in the contemporary era to think that it was only three generations ago that Sir William Osler, writing about RA in the “Principles and practice of medicine” published in 1892, stated that “Arsenic seems to do good as a general tonic… . When good results, it is largely from change of scene and climate…”

How times have changed, as have the nature of unmet needs for rheumatology patients! Fortunately, and in the case of RA in particular, enormous advances in understanding pathological mechanisms together with concurrent advances in drug development technology opened the gateway to an era of highly efficacious “targeted” therapies . And the great news is that the armamentarium continues to expand at a rate . We now have a wide variety of highly effective injectable drugs and the first generation of new oral drugs (sometimes called “small molecules”) have been recently approved for use in the UK . And many more new treatments are on the way . These advances, together with the recognition of the importance of early intervention and a so-called “treat-to-target approach” (regular treatment adjustments according to response with a

view to achieving remission) have transformed the outlook for people living with RA and JIA .

Furthermore, as the first generation of biologic drugs have come off patent, more cost-effective, yet similarly efficacious, biosimilar copies have become available . As a consequence, competitive pressures of market forces are driving prices downwards . All this is unquestionably good news for people living with RA and JIA . However, in an era of health economic constraints and protocolised treatment regimens, today’s health care professionals would do well to recall the sagacious words of Sir William Osler from over a century ago . “The good physician treats the disease but the great physician treats the patient who has the disease .” These words remind us that the art of rheumatology and compassionate care needs to be exercised alongside the science . And we all need to keep up with the dizzying pace of change in practice and clinical advance .

From its inception, through the extraordinary vision of the founder, Ailsa Bosworth MBE, NRAS has played a truly remarkable role, championing the voice of compassionate care and best practice in the face of this rapidly changing landscape . As Ailsa moves on to new roles, including that of ‘National Patient Champion’, I am sure that you all will wish to join me in expressing our gratitude to Ailsa for her vision, wisdom, energy, inspiration and compassion . While she will continue to support NRAS, she leaves her role as CEO having created an extraordinary charitable organisation, many of whose members have first-hand experience of arthritic disease and who contribute immeasurably to the well-being of others who live with RA and JIA . This three-year strategic vision builds on the firm foundation established 17 years ago and remains as vitally important as ever to ensure that through its many and varied activities, NRAS represents an invaluable resource to help all those living with RA and JIA to live the best possible quality of life .

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Parliamentary Event to celebrate our JIA Family fundraisers20th June 2018


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About the National Rheumatoid Arthritis SocietyChanging Minds, Changing Services, Changing Lives for People with RA and JIA

The National Rheumatoid Arthritis Society (NRAS), is the only patient-led organisation in the UK specialising in rheumatoid arthritis (RA) and juvenile idiopathic arthritis (JIA) . Due to its targeted focus on RA and JIA, NRAS provides truly expert and wide-ranging services to support, educate and campaign for people living with these complex autoimmune conditions, their families and the health professionals who treat them .

The NRAS vision is to support all with RA or JIA to live life to the full, with an underpinning mission to:

�� support everyone living with the impact of RA or JIA at the start and every step of their journey

�� to inform – be their first choice for reliable information, and

�� empower all to have a voice and take control of their RA or JIA

NRAS has 24 staff at the time of publication (early January, 2019), one of whom is embedded within a health provider and organising and delivering our face to face supported self-management programmes in the South of England .

We take pride in the fact that everything we stand for and do is patient-led through regular engagement with our Members, Volunteers and the wider RA and JIA public across the UK . We conduct regular social research on issues affecting quality of life and publish surveys and reports which we use to campaign for access to better and more equitable services in all parts of the UK . We support a great deal of clinical and academic research in a variety of ways and we collaborate widely with partners such as the British Society for Rheumatology, NHS England, EULAR (European League Against Rheumatism), the Scottish Society for Rheumatology, IMID-Bio Consortium, The National Institute for Health and Care Excellence (NICE), disability consortia and alliances as well as with the Pharmaceutical Industry .

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About Rheumatoid Arthritis (RA)Rheumatoid arthritis is a complex and serious, systemic autoimmune condition where the immune system attacks the joint tissue causing inflammation, stiffness, pain and extreme fatigue . This chronic disease, which chiefly impacts upon joints can also affect other organs such as the heart, eyes and lungs . Uncontrolled RA can cause premature mortality . RA is often confused by the general public with osteoarthritis, which is a different disease caused by wear and tear of the joints as we get older . RA impacts heavily on people of working age affecting more than 400,000 of the UK adult population, with approximately 26,000 new diagnoses each year . You can find out more by visiting www.nras.org.uk .

About Juvenile Idiopathic Arthritis (JIA) JIA is an umbrella term for a number of conditions which relate to inflammation in the joints in children under 16yrs . Around 12,000 children in UK (1 in 1000) under the age of 16 have JIA, with 1 in 10,000 children being diagnosed each year . You can find out more by visiting www.jia.org.uk .

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Our Core ValuesWe approach our commitment and responsibilities to all with empathy, professionalism, passion and enthusiasm . We are committed to strive to achieve the best results and outcomes that we can for those we represent . These core values underpin the way we work .

At all times, we act:

TRANSPARENTLYWe work openly and ethically, with integrity, honesty and independence .

INNOVATIVELYWe are uniquely creative and constantly challenge the status quo, always striving for better and looking for new ways to add value, whilst basing what we say and do on the best evidence as well as input and feedback from our Members’ experiences and those of the wider communities of people affected by RA and JIA .

PASSIONATELYOur staff are not just enthusiastic and committed, they are passionate about making a positive difference for all those we represent .

COLLABORATIVELYWe work with many different organisations, including other charities, alliances and coalitions, as well as the leading health professional organisations in our field .

DECISIVELYWe are results focused and deliver on our projects and campaigns . Our many awards are testament to our achievements .

INCLUSIVELYWe act with sensitivity and compassion, respecting the needs and preferences of the individual (regardless of creed, gender, age or ethnicity), while at the same time representing the entire community affected by RA or JIA in the UK, encompassing adults and young people, families, carers and rheumatology healthcare professionals .

Medicinesin Rheumatoid Arthritis

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Members’MAGAZINEWINTER 2018

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RA AWARENESS WEEK

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Newly Diagnosedwith Rheumatoid Arthritis – Information Pack

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SUPPORT OUR FUTUREA gift in your Will helps NRAS to build a better future for those with RA and JIA

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I Want toWorkA guide for people with Rheumatoid Arthritis

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A self-help guide to claiming Personal Independence Payment for adults with Rheumatoid Arthritis

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Our Members and the wider RA community say…

“ I feel the helpline were invaluable and literally saved my life on darker days.”

“ Thank you so much for producing the new Medicines booklet. Everything I usually read tells me what I must not do and is scaremongering, but this booklet made it relatable, understandable and put my mind at ease. It is excellent!”

“ I certainly don’t feel so alone thanks to the NRAS site, it is my lifeline for sure”

“ I have only phoned the helpline a couple of times and the operators are fabulous. Very calm, understanding and professional. It’s not like phoning a big call centre but more like phoning a friend. A friend that will listen and help. I can’t recommend and thank them enough. A fabulous resource and brilliant service - I feel lucky to know they are there if I need them.”

“ I was so pleased [with my experience in contacting the helpline] that I have now joined NRAS and am even thinking about going to the next meeting of the local group.”

“I read your e-mail in response to the mail I sent and I must tell you that I had tears of joy reading what you wrote. You made me feel like I am the only one your organization is concerned about. So much compassion and understanding for your members. This is the first time someone is describing exactly how I feel all the time and who made me understand that there is probably something that will work for me when I will read all the links you sent me for info. I am so grateful that you took the time to answer and ...so quickly. I am, with many, very lucky to have an organization like yours.”

“ I just wanted to write to say thank you very much to everyone involved in arranging the weekend away. The children and I had a wonderful time, and I returned feeling refreshed and ready to face all the worries and hassles of supporting my ill child. Tamsin was asked at school today what it was like, and she said, ‘I didn’t have to explain anything, everyone there just knew how it feels’ and I think that feeling understood is an amazing gift for you to have given her.”

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Raising Awareness

Strategic Aim 1Increase public awareness of Rheumatoid Arthritis (RA) and Juvenile Idiopathic Arthritis (JIA) and the services NRAS can provide to those living with these conditions.

Research demonstrates that the general public are not always aware that there are many different types of arthritis and frequently ‘assume’ when they hear the word ‘arthritis’ that it means Osteoarthritis (OA) and relates to old people . By contrast, RA and JIA are medical emergencies, yet the biggest delay in getting to a diagnosis is people not realising that the symptoms they are experiencing require urgent investigation . By raising public awareness, we hope to ensure that more people seek help at an earlier stage . We will also raise awareness of how NRAS can help people with RA/JIA .

To achieve this aim, we will:

�� Highlight to the general public through our communication channels and the media, the serious, systemic, autoimmune nature of the conditions (and ensure that NRAS is the go-to organisation for media enquiries about RA and JIA)

�� Continue to raise awareness of current guidelines and standards with GPs and primary healthcare professionals .

�� Continue to raise awareness of NRAS resources and their value with rheumatology professionals and primary care to increase the number of patients referred to NRAS at diagnosis

�� Continue to extend our reach and make NRAS easy to find through multiple channels . A new digital strategy will underpin all our social media activity . This will include

wide adoption of solutions using technology and audio-visual engagement, particularly addressing the following populations: older people with RA and co-morbid conditions; the younger population from 16-25 with both RA and Adult JIA; men; populations for whom culture and language are barriers to accessing care and being concordant with medication; those who are socially deprived with low educational attainment .

�� Grow audiences who interact with us during #wearpurpleforjia (annual awareness day for JIA in June), annual RA Awareness Week (June), and World Arthritis Day (annually on October 12th) .

(For more information about year on year growth of our overall reach, see our Annual Review Reports)

�� Develop and publish more case studies/individual patient stories to build a personalised approach to mainstream media and social media outlets which highlight the diseases, the symptoms and burden of disease and treatment .

�� Highlight the reputation and leadership that NRAS provides in our field, giving people affected by RA and JIA as well as the health professionals who treat them, increased confidence in our services and resources .

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Importance of Self Management

Strategic Aim 2Increase understanding of the importance and benefits of supported self-management (SSM) and engagement in one’s own health and care.

By achieving the above aim we will help people affected to improve their outcomes . Patients are disadvantaged and have poorer outcomes if they are part of a clinical medical pathway which does not include receiving education and support through shared decision-making (SDM) and care planning to self-manage well . Sign-posting them to NRAS and other organisations who can help is an important part of such self-management education .


�� Develop and introduce new ways to widen access to our supported self-management programmes by converting our face to face programmes (only currently available where they are commissioned) to on-line, interactive modules as part of a social prescribing strategy .

�� Work with technology partners, to introduce a new, collaborative service whereby, following needs assessment and patient activation measurement, we can push specific resources to people with RA and JIA to meet their individual needs . In addition, it is our intention to calculate the health economic benefit of this new service .

�� Build an integrated national and regional marketing and digital strategy to drive those with RA to new on-line services when available

�� Measure the impact of our existing NRAS resources and services to evidence improved outcomes to health professionals and people using our services .

�� Work with technology partners to develop innovative ways to obtain data on burden of disease and treatment as data in this area is generally poor, enabling NRAS to increase services and resources accordingly, as well as provide researchers and industry with a rich source of real-world data, not normally easily available to them .

�� Influence and shape treatment guidelines and standards to incorporate patient activation measurement and a supported self-management pathway as part of the clinical medical pathway

�� Support health professionals in every way possible to incorporate SSM, including SDM and care planning into their practice in routine clinical care and ensure sign-posting to NRAS and other organisations who can help

�� Campaign to ensure that mental and emotional health is measured at baseline and throughout a person’s journey with disease and given equal parity with measurement of physical health and wellbeing .

�� Continue to emphasise the importance of work as a health outcome

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Importance of High Quality, Accessible Information

Strategic Aim 3We will focus on health literacy issues and ensure that our services/resources are more widely promoted and visible.

The definition of health literacy is: “The personal characteristics and social resources needed for individuals and communities to access, understand, appraise and use information and services to make decisions about health .” Ensuring that our resources are relevant and accessible will give greater benefit to all who need us, especially those groups and communities who, for a variety of reasons, may have poorer outcomes .


�� Continue to invest in providing great publications that are easy to understand and engage with, well written using clear, lay language, glossaries and good use of imagery . This aim supports health professionals to provide evidence-based, informative and accessible information at diagnosis and other key points in the pathway for their patients .

�� Make our all our services and resources available in a wide variety of formats to suit individual need and preference . We will continue to gain insight into the needs and preferences of our beneficiaries as a priority .

�� Develop new NRAS and JIA websites to provide greater interactivity and a better experience for visitors as well as enabling more efficient in-house website control .

�� A new digital strategy that will, at all times, focus on improving the journey of those who access our services, interact with our resources and support the organisation such that we become the go-to digital platform for information on RA and JIA .

�� Continue to invest in production of high-quality video and animations which enable people to learn, experience and share emotive patient stories, and access accurate and evidence-based educational content on a wide variety of subjects . Such subjects would include: access to medicines, making the most of clinic visits, transitioning from paediatric to adult care, research opportunities, lifestyle issues, and more . This is an important area of work as use of audio-visual material is increasingly the way people access learning and this is proving, evidenced by number of views, to be very popular .

�� Work with health professionals to demonstrate that by accessing NRAS services and resources, patient outcomes can be improved .

�� Aim to embed NRAS within national and regional pathways of care and be considered as part of the Multidisciplinary Team .

�� Work assiduously to ensure that important health messages are more widely communicated, myths around RA and JIA debunked, and find new ways to promote these messages to the communities we have identified have poorer outcomes .

�� Increase people’s control over their health, their ability to seek out information, and take greater responsibility for their own health by providing the above accessible resources and services .

�� Continue to develop the Apni Jung information resources for the UK South Asian population for whom we know access to appropriate health information is challenging .


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Influencing and Campaigning

Strategic Aim 4Influence policy at all levels and help shape services to create equitable access to the best treatment and care for everyone living with RA and JIA.

Through the work we do with our Members, Volunteers, Healthcare Professionals and other stakeholders in the rheumatology world, NRAS knows that proven examples of best practice are not routinely shared and implemented elsewhere, and that access to the best possible treatment and care is not a reality for everyone . NRAS campaigns for the 400,000+ people in the UK with RA and the 12,000 with JIA in important areas such as access to work, disability benefits, mental health and others, in order to ensure that these issues become priorities for policy makers, commissioners and other decision-makers .


�� Make our work in the field of Policy and Public Affairs more visible through innovative digital communications and via our social media channels, and by keeping the Campaigns area of our website engaging and up-to-date .

�� Continue to build on the successful work of our Campaigns Networks in Scotland, Wales and Manchester, and seek to introduce new networks in Northern Ireland and across strategic areas in England in order to raise the profile of the charity and the needs of our beneficiaries across the entirety of the UK .

�� Proactively engage with Members of Parliament and politicians in the devolved nations and areas to raise RA and JIA up the political agenda and encourage our Members to engage with their politicians using Campaign Packs and other tools provided by NRAS .

�� Remain enthusiastic and collaborative members of key Coalitions and Alliances where our voice adds to our partners’ voices on issues around disability, work, social care, prescription charges, benefits, education and much more .

�� Remain the leading patient organisation in our field on accessing new medicines, working with NICE on Health Technology Appraisals and Standards/Guidelines, and NHS England and Health Improvement Scotland on access to biologic and biosimilar medicines .

�� Undertake social research and produce reports on important issues to our Members and the wider RA and JIA public in order to shape the policy environment with evidence-based original research .

�� Help shape local rheumatology and MSK services through collaborating with commissioners and local providers who are transforming existing care pathways and/or developing new models of care in the NHS .

�� Raise the importance with policy-makers of increasing access to psychological support and talking therapies in RA and JIA .

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Developing support for children and young people

Strategic Aim 5JIA-at-NRAS is the go-to service for children and young people living with JIA across the UK. We will introduce new resources and broaden our support for this group, their families, carers and the health professionals who support them.

There remains very low awareness of the fact that children get arthritis too and so much needs to be done in this area (Strategic Aim 1) . After the last 4 years developing our service for children and based on our engagement with families and health care professionals, we are now in a position where we can directly build our next three-year strategy based on their needs . Our focus will be early intervention, building a wider range of frontline support services for children, young people and young adults with JIA, campaigning and service delivery .


�� Undertake to raise awareness and increase public understanding about JIA through high profile events, social media and our parent/carer, volunteer and supporter network . Experience in early childhood years lays the foundation for all future development and the earlier JIA is diagnosed and treated, the greater the chance of a positive outcome .

�� Continue to build expertise in our help-line service (often the first port of call for parents) to support parents and carers in the areas they find most challenging . For example, Individual Health Care Plans for a child with JIA; needle phobia, benefits and financial support .

�� We will establish focus groups to help us develop our frontline services and resources in regard to further education and careers, based on findings from our ‘Work Matters’ report .

�� Provide better resources and relevant sign-posting for young Adults with JIA once they have transitioned into adult care .

�� In JIA-at-NRAS, we will develop a truly engaging and rewarding volunteer programme, to support our growing campaigns work, ensuring that all those who become a volunteer, have an enjoyable and rewarding experience working with us .

�� Develop and implement a major survey to gain up to date data on the needs of families and young people affected by JIA with particular emphasis on access to best care .

�� Develop new resources to support siblings, peers and greater support for families with children in school . These will include real life videos and educational materials .

�� Build on the huge success of our annual public awareness and fundraising day – #WearpurpleforJIA

�� Develop a new website for JIA as detailed in Aim 3 .

�� Continue to provide Family and Young People’s events across the UK providing vital educational and networking opportunities .

14Laughing in the rain at at NRAS JIA Family Fun Day, 2nd June 2018 }


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Financial InformationSound financial governance is, and always has been, a priority.

We maintain a reserves policy which requires that we hold at least 6 months’ running costs at all times and, as at January 2019, have slightly in excess of this amount invested ethically and securely . Our plans over the next period include building our reserves to a higher level as we have a project beyond 2022 which would require capital investment to bring to fruition .

Our strategy over the next 3 years is to steadily increase our annual income, which in recent years, has been between £1 - £1 .2M . We are working to secure and grow unrestricted fundraising income through new and existing channels to cover a greater level of core costs year on year . We will also take a more strategic approach with Trust fundraising to balance the need for core funding with that which is required to support specific projects over the next strategic period .

We will be continuing to work to increase and further develop our legacy giving programme, proactively engaging Members and donors . Impact will be monitored from 2022 as this strategy will take time to have an impact which can be measured .

We have a newly developed Trust Fundraising and Company Giving team and anticipate that 2019 will see a significant increase in Trust and company giving income, building over the 3-year period to include larger income sums which underpin our transformational service development programmes . We expect our income to grow from its current level of £1 - £1 .2M to £1 .5M by 2022 .

Our events and community income streams will also expand over the period with a greater focus on fundraising during RA Awareness Week and #wearpurpleforjia, both of which have capacity to grow . We will also be introducing a greater number of NRAS-led fundraising events and opportunities for corporate engagement .

NRAS will continue to invest in its fundraising team and programmes to ensure our income streams reach their full potential .

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NRAS staff Matt Bezzant and Shivam Arora raising money for NRAS

by completing Ride London, 2018 – Well done guys! }


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Our Principal ActivitiesWe will achieve our aims by delivering our products and services through our principal activities.

The aims set out in this document will be delivered through our principal activities . We are committed to providing support, information, services, education, campaigning and patient advocacy of the highest quality to and on behalf of all those affected by RA and JIA as well as their families .

Our front-line services, including the helpline, online peer support community, local groups, peer-to-peer telephone support programme, information booklets, websites and patient events, continue to offer high quality, accessible and relevant support as a priority . Work is an important health outcome and we have specific resources relating to the workplace for employees and employers as well as up to date information on benefits including Personal Independence Payments . Both of these important subjects are frequently raised by people calling our helpline .

We are a membership organisation and provide a magazine three times per year to our Members, among other benefits . We also support health professionals in the field of rheumatology and primary care through training programmes and provision of free patient information so that we can ‘help them to help their patients’ . Living with RA and JIA is not just about having physical and medical needs . These diseases have a huge impact on emotional well-being and quality of life both of the individual and their family and our latest report (2018) addresses the issues of mental health and emotional wellbeing . We therefore strive to help people by supporting all their needs in a holistic way whether physical, medical, emotional, mental, social, economic and/or employment related, as well as those relating to access to benefits and the built environment, housing and transport .

We are at the table at a national level whenever standards and guidelines, RA/JIA pathways and access to treatment are being discussed . We conduct our own social research and publish a key report on a topic of importance to people with RA/JIA annually .

Translational scientific, and medical research has revolutionised the field of auto-immune conditions such as RA and JIA in the past 20 years and whilst we do not conduct medical research ourselves, (we do carry out major social research studies on an annual basis), we support a growing number of academic and clinical research studies throughout the UK on an on-going basis . Researchers contact us regularly for support in a variety of ways . We also recruit to clinical studies at times and provide expert volunteers to advise on issues of Patient and Public Involvement .

We are providers of supported self-management group training programmes, however the difficulty of getting such courses commissioned by Clinical Commissioning Groups or Health Boards due to the financial constraints in the NHS, means that we will, over the course of this strategic period, develop these into engaging and interactive on-line modules which ultimately, health professionals will be able to ‘prescribe’ for the benefit of their patients .

We have some transformational projects in plan for execution over the next three years which will demonstrate the value that NRAS brings to improving the lives and outcomes of people with RA and JIA, whilst leading the way in the use of real-world evidence and data to enable us to provide better and more personalised services to those we serve .

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Lead Author: Ailsa Bosworth MBE

Contributors: Chief Medical Advisor Peter Taylor MA, PhD, FRCP, FRCPEAll NRAS staff were involved in the development of the strategic aims .

Editors: Ailsa Bosworth MBE and Deputy CEO Clare Jacklin

National Rheumatoid Arthritis Society

Strategic Plan2019-2022

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NRAS is a registered charity in England and Wales (1134859) and Scotland (SC039721) . A company limited by guarantee . Registered company in England and Wales (7127101) .

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