Arthritis Ireland Strategic Plan 2019-2023

A BETTER WORLD FOR PEOPLE LIVING WITH ARTHRITIS TODAY AND A WORLD WITHOUT ARTHRITIS TOMORROW  

18

ARTHRITIS IRELAND STRATEGIC PLAN 2019-2023

CONTENTS

Introduction from the Chair

2

Introduction from the Chief Executive

4

Mission, Vision, Purpose, Values

6

Our Impact

8

Strategic Priorities

11

1. Provide relevant and meaningful services to people living with arthritis across the full journey of their disease

12

2. Make Arthritis Ireland the ‘go-to’ destination for information, services and supports

13

3. Ensure our organisation is dynamic, networked, transparent and resourced to deliver our strategic priorities

14

4. Advocate and offer solutions to the State to recognise its role and responsibilities to people living with arthritis

15

5. Build public awareness and understanding of arthritis

16

6. Influence research activities for better treatments, diagnoses and cures

17

www.arthritisireland.ie

19 1

INTRODUCTION FROM THE CHAIR THE CREATION OF THIS ARTHRITIS IRELAND STRATEGY IS TIMELY. SO MUCH HAS CHANGED IN THIS ORGANISATION AND THE SOCIETY AND ENVIRONMENT IN WHICH WE NOW OPERATE. Seoirse Smith Chairman

In very simple terms we wanted to ask ourselves some questions, given that changing landscape in a changing world in which we operate. Does our organisation know where it is headed? Quite often one finds that many organisations have a fragmented view of their ‘blueprint’ or ‘roadmap’ and operate in a certain way ‘because that’s the way we always did it’.

Often, an organisation’s blueprint articulates how it operates, but is missing the answer to the larger question: what value is the organisation providing to its stakeholders?

In the case of a patient organisation, our stakeholders are diverse. They include, naturally, people living with arthritis and their families, as well as healthcare professionals, researchers, policy makers, industry, funders, donors, other nonprofits and patient organisations.

So, going back to our vision, our mission (they are not the same) and our strategic objectives is important for many reasons.

It is important not just so that we match what we do to what we intended to do and align our operational and tactical plans and how we run the organisation with our strategic plans.

It is also important as a tool to communicate with our stakeholders. It helps us to articulate what we do and how we do it for the people who use our services, for the people who fund or sponsor us and for our staff and volunteers.

Our ability to have an impact, to be an effective organisation, to make a difference to people living with arthritis is improved by having a clear strategy to which we can align our operational plans. However, the clarity it brings to all of the people involved, in whatever capacity, and the trust it engenders that the organisation is clear about what it wants to do and how it wants to do it is also critical.

Making a difference for people living with arthritis

2

ARTHRITIS IRELAND STRATEGIC PLAN 2019-2023

IN CREATING THIS STRATEGY WE WANTED TO:

> Clarify our strategic vision for Arthritis Ireland; > Be clear about Arthritis Ireland’s mission; > Ensure alignment of our strategy and our values; > Develop clear objectives on which our organisation’s operational plan is based; > Build the optimum operating model for the organisation that delivers on our strategy; and > Develop a clear roadmap to get the right things done for those we wish to help/support, the users of our services, and the organisation itself.

As part of the definition of our strategy we have identified key strategic priorities. We have been able to begin, as some are longer term than others, development of plans for the organisation that aim to meet those strategic priorities. However, most importantly is the clear statement of the objectives that are aimed at making a difference for people living with arthritis and the clarity provided to all who wish to engage with Arthritis Ireland.

Seoirse Smith Chairman

www.arthritisireland.ie

3

INTRODUCTION FROM THE CHIEF EXECUTIVE

In the four decades since Arthritis Ireland was established, the organisation has worked relentlessly to support people with arthritis and to improve their quality of life. That motivation finds renewed expression in this new strategic plan, which puts those living with the condition at the centre of everything we do.

OUR PLAN SIGNPOSTS THE KEY ACTIONS THAT WILL MOVE US CLOSER TOWARDS THE ATTAINMENT OF OUR VISION Gráinne O’Leary Chief Executive

4

ARTHRITIS IRELAND STRATEGIC PLAN 2019-2023

This is an ambitious plan – it has to be. While there have been dramatic improvements in our knowledge and understanding of arthritis, and in how people are diagnosed and treated; there is no shortage of fresh challenges.

The reality is that as we live longer, increasing numbers are going to get arthritis; the health system is under immense pressure; health inequalities are taking their toll; while false claims of cures serve to mislead and confuse.

These have not dented our ambition.

Instead, we have responded by articulating a plan built around six strategic priorities to achieve our vision of a better world for people living with arthritis today and a world without arthritis tomorrow.

This will not easily be achieved.

However, working towards an arthritisfree world is what the one million people living with the disease in Ireland deserve.

Our plan signposts the key actions that will move us closer towards the attainment of our vision, as well as a way of working that harnesses the power of collaborative action and partnership. Ultimately, this is going to be a team effort.

Naturally, the best plans are dynamic that take account of shifts in the environment, and that respond to what works and what does not. We will be constantly mindful of this as we implement each of the actions and report on our progress. At each point on the journey, we will ask what does success look like? How does what we’re doing support people living with arthritis, whether they are in Drumcondra or Drumlish, Ballina or Ballineaspaig?

In fact, that very phrase, ‘people living with arthritis’ underlines that arthritis is not just a disease that affects the person with the condition – the ‘patient’, if you like. Instead, there is a much wider circle also living with arthritis – family, work colleagues, team members – anyone who is impacted by this chronic condition. The ripple effect of the disease is much greater, therefore, than those experiencing the pain, fatigue, disruption and destruction of arthritis.

At one of our recent information events, a delegate recorded their experience of the day as ‘Validation. Confirmation.

Acceptance.’ That’s very powerful to hear – and it inspires us to go further, to work relentlessly on your behalf, to make this plan a reality and, ultimately, to achieve a world without arthritis.

I hope that you will join us on the journey.

Gráinne O’Leary Chief Executive

www.arthritisireland.ie

5

ARTHRITIS IRELAND STRATEGY STRATEGIC 2019-2023 PLAN 2019-2023 OUR VISION IS OF A BETTER WORLD FOR PEOPLE LIVING WITH ARTHRITIS TODAY AND A WORLD WITHOUT ARTHRITIS TOMORROW.

Mission

Purpose

We seek to ensure that every person living with arthritis in Ireland is supported to live a full and active life, having access to appropriate health services and treatments.

We work to ensure an enhanced quality of life for people living with arthritis, minimising the devastating effects that arthritis can have on lives.

> We are the first and frequent point of support for people living with arthritis in Ireland.

> We listen to our community and advocate solutions to their needs through developing evidence-based policy proposals. > We influence the research agenda and promote development of new diagnostics, treatments and supports.

Values > We understand the importance of trust and acting with the utmost integrity. We are responsible, accountable and operate to the highest governing standards.

> We are committed to transparency and are honest and clear about what we do, what we don’t do and why. > Our person-centred approach puts people living with arthritis at the heart of everything we do.

Arthritis doesn’t discriminate, so it’s important for us to understand the lived reality of every person affected by this debilitating disease.

6

> We develop and deliver the services and supports which allow people living with arthritis to lead full and active lives.

> We strive to be inclusive and ensure that the voice of those living with arthritis always takes priority. > We work in partnership with people living with arthritis, their families, employers, health professionals and other service providers to achieve the best possible outcomes and greatest impacts. > We are innovative, forward thinking and dynamic. We are committed to finding smarter ways of doing things to improve quality of care.

integrity. transparency. person-centred. inclusive. partnership. innovative.

ARTHRITIS IRELAND STRATEGIC PLAN 2019-2023

www.arthritisireland.ie

7

ARTHRITIS OUR 1.

IRELAND IMPACT STRATEGY 2019-2023 THE DIFFERENCE WE MAKE

Enabling people to take control Self-management has been proven to make an enormous difference to the lives of people with arthritis. Our ‘Living Well with Arthritis’ and ‘Breaking the Pain Cycle’ programmes equip people with tools and techniques to help better manage their condition, for example, reducing pain and fatigue; starting or improving an exercise regime; improving mental health and problem solving; and setting and achieving goals.

2.

Educating and informing Knowledge is power. When it comes to living with arthritis and successfully managing the condition, being well-informed about the disease is key.

This extends from understanding treatments, to managing flares, and incorporating healthy life choices around exercise and diet into your life.

Arthritis Ireland has developed and is continuing to expand its range of information resources. We disseminate a wealth of material through our website and social media channels, in booklets, as well as through public information events.

3.

Providing emotional and practical support Living with a chronic condition like arthritis, people can sometimes feel overwhelmed, isolated, misunderstood and disempowered. Being able to connect with someone who understands is incredibly empowering. Through our helpline and various online support groups, we offer advice and information, and connect people living with arthritis to other organisations and community supports.

8

ARTHRITIS IRELAND STRATEGIC PLAN 2019-2023

7,200

people have undertaken a communitybased self-management programme since 2006

2,400

people have undertaken an online self-management programme

49,000

information booklets distributed in 2018

2,800

people attended public information events in 2018

111,000

people visited our website generating more than 366,000 page views in 2018

3,200

people contacted our helpline or engaged with our online groups in 2018

4.

Getting people moving Physical activity is proven to be a vital part of managing arthritis. As well as reducing pain and inflammation, keeping active improves joint support and lubrication, helps with weight control and has many other health benefits. When you’re active, you’re feeding your joints! To meet the needs of people with arthritis, we organise and deliver physical exercise classes and opportunities around the country, ranging from walking groups through to physiotherapist-led classes.

1,000

people participated in one of our physical exercise events in 2018

5.

Building trust Public trust is earned and built over time. It only comes when an organisation is transparent and open in all its dealings; and is consistent in doing what it says it is going to do. These are the principles which underpin everything we do. We comply with best practice standards set by the Charities Regulator, amongst others. > New working groups established in services, advocacy and communications to support the work of the organisation and the Board.

6.

Advocating for change Through our advocacy, we ensure that the experiences and needs of people living with arthritis inform policy and access to services.

We listen to our community and represent them in discussions with policy-makers and politicians. Our advocacy work is multifaceted and collaborative, as we work with other organisations and agencies towards the attainment of our goals. > We represent people living with arthritis through the National Clinical Programme for Rheumatology, which developed the Model of Care for Rheumatology in Ireland. This provides a blueprint for the development of rheumatology services in this country.

7.

Working on a cure Over the past six years, we have invested more than €2.5million in research. This has supported the establishment and development of two centres of arthritis and rheumatology research at UCD and Trinity College Dublin.

Researchers supported by Arthritis Ireland are producing ground-breaking work, which is improving our understanding of arthritis, how it is treated; and ultimately benefiting the lives of those living with the condition. > Dr Charlene Foley’s study of Down’s Arthritis was the largest of its kind in the world and has greatly increased our understanding of how arthritis affects children with Down Syndrome. > Researchers at the UCD Centre for Arthritis Research have identified a new protein, C5orf30, a human gene that controls inflammation and tissue damage in rheumatoid arthritis.

8.

Working collaboratively We work most effectively when we work collaboratively and harness the energy and creativity of others. To best serve the needs of people living with arthritis, we actively collaborate with national and international bodies like EULAR, the MRCG, IPPOSI, the Disability Federation of Ireland, the Health Reform Alliance and more. This ensures that the views and experiences of people living with arthritis inform discussions ranging from access to medicines and clinical trials, to supports for people with disabilities.

20,000 Facebook 5,500 Twitter 1,200 Instagram 550 Youtube 600 LinkedIn

www.arthritisireland.ie

9

10

ARTHRITIS IRELAND STRATEGIC PLAN 2019-2023

STRATEGIC 1.

PRIORITIES MAKING A DIFFERENCE FOR PEOPLE LIVING WITH ARTHRITIS AND PROVIDING CLARITY TO ALL WHO ENGAGE WITH US.

Provide relevant and meaningful services to people living with arthritis across the full journey of their disease.

2.

Make Arthritis Ireland the ‘go-to’ destination for information, services and supports.

3.

Ensure our organisation is dynamic, networked, transparent and resourced to deliver our strategic priorities.

4.

Advocate and offer solutions to the State to recognise its role and responsibilities to people living with arthritis.

5.

Build public awareness and understanding of arthritis.

6.

Influence research activities for better treatments, diagnoses and cures.

www.arthritisireland.ie

11

1

STRATEGIC PRIORITY

PROVIDE RELEVANT AND MEANINGFUL SERVICES TO PEOPLE LIVING WITH ARTHRITIS ACROSS THE FULL JOURNEY OF THEIR DISEASE.

Why is this important?

Meaningful services provision enables those impacted by arthritis to live fuller lives. In this way, we will meet people where they are at – in terms of their life stage, the stage of their disease and their needs.

Key Actions 1. Work in partnership with people living with arthritis and their families to provide the best possible services.

2. Work in partnership with healthcare professionals, researchers, service providers, employers, community groups and other patient organisations – nationally and internationally – to develop holistic services for people living with arthritis.

3. Evaluate and review all aspects of service provision in partnership with people living with arthritis, health professionals, funders and existing networks to ensure they are appropriate and relevant.

12

ARTHRITIS IRELAND STRATEGIC PLAN 2019-2023

4. Map the journey of people living with arthritis by capturing all aspects of the disease lifecycle; age of diagnosis; type of arthritis; physical, emotional and social impacts and use this information to improve and develop our services.

5. Plan the delivery of services based on need, capacity and funding.

6. Ensure that staff and volunteers delivering services receive support, training and development.

STRATEGIC PRIORITY

2

MAKE ARTHRITIS IRELAND THE ‘GO-TO’ DESTINATION FOR INFORMATION, SERVICES AND SUPPORTS.

Why is this important?

Arthritis Ireland provides trustworthy, reliable and impartial information and support for people living with arthritis, their families and healthcare professionals. Adopting an evidence-based approach to the information we provide and the services we deliver gives people confidence and security in engaging with us.

Key Actions 1. Ensure that more people living with arthritis are aware of and have access to Arthritis Ireland.

2. Increase our presence and delivery of services throughout the community.

4. Build alliances, partnerships and networks within the health and community sectors and take collective action in addressing the needs of those living with arthritis.

3. Engage in peer-to-peer learning and collaborations across the health sector.

www.arthritisireland.ie

13

STRATEGIC PRIORITY

3

ENSURE OUR ORGANISATION IS DYNAMIC, NETWORKED, TRANSPARENT AND RESOURCED TO DELIVER OUR STRATEGIC PRIORITIES.

Why is this important?

We can’t deliver this plan by ourselves. We recognise the importance of networks and partnerships to build a better world for people living with arthritis. To achieve this, we need to be adequately resourced, wholly transparent and accountable.

Key Actions 1. Design a dynamic organisation, capable of delivering this ambitious strategic plan.

2. Invest in our staff and volunteers, through supporting their education, training and development.

3. Establish sustainable, diverse income streams, including individuals, corporates and the State; ensuring all fundraising activities have internal as well as external support.

4. Identify and build engagement with potential partners.

6. Ensure continuing compliance with the Charities Regulator Governance Code, Statement of Good Practice in Fundraising and the Statement of Recommended Practice.

7. Invest in Board, sub-committee and working group development, succession planning and targeted recruitment.

8. Create financial and operational plans that enable the delivery of the strategic plan.

5. Utilise information and communications technology (ICT) and ehealth solutions to expand our capacity and deliver transformation in service delivery.

Utilise information and communications technology and ehealth solutions to expand our capacity and deliver transformation in service delivery.

14

ARTHRITIS IRELAND STRATEGIC PLAN 2019-2023

4

STRATEGIC PRIORITY

ADVOCATE AND OFFER SOLUTIONS TO THE STATE TO RECOGNISE ITS ROLE AND RESPONSIBILITIES TO PEOPLE LIVING WITH ARTHRITIS.

Why is this important?

Health policy and service provision should respond to and meet the needs of people living with arthritis; and facilitate a right person, right place, first time approach.

Key Actions 1. Engage with policy-makers to ensure the implementation of the Model of Care for Rheumatology in Ireland.

2. Undertake grassroots advocacy and public engagement to ensure that Arthritis Ireland is reflecting the lived experience and needs of people with arthritis, and to secure support for campaigns.

7. Advocate for reform of the healthcare and social care systems such that it treats everyone equally and focuses on the needs of all social groups in society.

8. Work to ensure that arthritis is included in assessments of national health profile, reflecting the growing burden of the disease.

3. Inform and contribute to evidencebased policy development and implementation that directly affects people living with arthritis.

4. Build national and international alliances that will progress our vision for change.

5. Support the involvement of people living with arthritis in the work of national agencies engaged in the assessment and reimbursement of new medicines.

6. Raise the profile of work as a health outcome and increase awareness of arthritis and the importance of early intervention’ in the workplace.

Engage with policy-makers to ensure the implementation of the Model of

Care for Rheumatology in Ireland. www.arthritisireland.ie

15

STRATEGIC PRIORITY

5

BUILD PUBLIC AWARENESS AND UNDERSTANDING OF ARTHRITIS.

Why is this important?

When people are better informed about their own health, they recognise early warning signs and engage early with the healthcare community, leading to better outcomes.

Key Actions 1. Undertake health promotion campaigns to increase public awareness and understanding of arthritis.

2. Develop a digital health infrastructure so that people can easily access trusted expert advice and information about arthritis to achieve better health.

3. Support other service providers, employers and local communities to gain an understanding of what it’s like to live with arthritis.

16

ARTHRITIS IRELAND STRATEGIC PLAN 2019-2023

4. Develop materials, resources and digital content to support people living with arthritis.

5. Partner with other stakeholders and agencies in the health sector to intensify our voice and achieve public health goals.

6. Engage with the media to increase understanding of arthritis and of the organisation’s work.

STRATEGIC PRIORITY

6

INFLUENCE RESEARCH ACTIVITIES FOR BETTER TREATMENTS, DIAGNOSES AND CURES.

Why is this important?

Research is increasing the knowledge base about arthritis, and that knowledge has the potential to transform the lives of people living with the disease.

Key Actions 1. Scope and map the current research landscape.

2. Conduct research prioritisation so that the needs of patients inform research supported by Arthritis Ireland.

3. Develop a research strategy.

4. Research models of public patient involvement best practice to build and implement an infrastructure.

5. Communicate research funded and supported by Arthritis Ireland, thereby increasing awareness of this work.

www.arthritisireland.ie

17

A BETTER WORLD FOR PEOPLE LIVING WITH ARTHRITIS TODAY AND A WORLD WITHOUT ARTHRITIS TOMORROW  

Arthritis Ireland 1 Clanwilliam Square Grand Canal Quay Dublin 2 D02 DH77 Web www.arthritisireland.ie Email info@arthritisireland.ie Tel 01 661 8188