Arthritis NZ - Mateponapona Aotearoa Annual Report 2023

Living well with arthritis

Annual Report 2023

Cover image: Our camp for children with arthritis is an amazing programme - and the water slide is always a highlight!

Contents

1

Arthritis New Zealand | Annual Review 2023

2

Arthritis in New Zealand – The Facts

4

Statement of Service Performance Summary

7

Initiative 1 – Building awareness

12

Initiative 2 – Effectiveness

24

Initiative 3 – Equity – continuing the journey

28

Initiative 4 – Research

33

Initiative 5 – Funding

38

Chair’s report

39

CEO’s report

40

2023 Board of Trustees

41

Summary financial statements

43

Auditor’s report

1

Arthritis in New Zealand

The Facts

Arthritis is one of the leading forms of disability Arthritis affects all ages including children

750,000+

adults are diagnosed with arthritis 2

Arthritis New Zealand | Annual Review 2023

Half the people with arthritis are of working age

Māori have a disproportionately high incidence of gout arthritis - a reflection of health inequities experienced

by Māori

*Ministry of Health: Annual Update 2021/22.

New Zealand Health Survey Health Quality and Safety Commission Gout Atlas

There are over 100 forms of arthritis The 3 most common are*:

16%

rheumatoid arthritis

Arthritis NZ provides:

(126,779)

• Online support and information

57%

osteoarthritis

27%

gout arthritis (208,713)

(442,925)

• An 0800 phone support service • A network of support groups both online and face-to-face • Camps for children and teens with arthritis • Arthritis Assist service providing education and support Annual Review 2023 | Mateponapona Aotearoa

3

Statement of Service Performance - Summary Who are we We are a national community-based organisation working with people affected by arthritis. We provide education, information, peer support, research, advocacy support and develop partnerships with other agencies working in the health and disability sector.

We work with a range of stakeholders including people affected by arthritis, health professionals, Māori and Pacific providers, researchers, donors and sponsors.

Why do we exist?

Our vision is to improve the lives of people affected by arthritis. This is undertaken by providing; • Information, a range of resource material, and support services such as Arthritis Assist and both online and face to face support groups • Education and online self-management programmes such as MyJointPain and the development of MyRA • Research funding and development of research initiatives

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Arthritis New Zealand | Annual Review 2023

• Advocacy on issues of importance to people with arthritis (such as employment, access to rheumatology services and government policies) and ensuring consumer perspectives are heard at all levels of decision making.

What did we do and how did we perform?

Initiating and driving partnerships with key stakeholders, including Osteoarthritis Aotearoa (2022, 2023) Diabetes New Zealand (2022, 2023) Heart Foundation (2022, 2023) Mahitahi Hauora and Northland DHB (2022, 2023)

Our strategic plan initiatives and reported highlights below show progress made towards improving the lives of people affected by arthritis.

National Paediatric Rheumatology Team (2022, 2023) Pacific Health Plus (2022, 2023) Porirua pharmacies (2022, 2023)

1

Building awareness, partnerships and consumer voices

2023

2022

90,828 website users

74,754 website users

3,725 MyJointPain users

4,090 MyJointPain users

36,509 video views on the YouTube channel

33,854 video views (YouTube)

13,029 social media followers across Facebook (Page), Instagram, LinkedIn, Twitter (X), YouTube and TikTok

11,334 social media followers across Facebook (Page), Instagram, LinkedIn, Twitter (X) and YouTube

6,442 members across nine support groups (Facebook private support groups)

4,933 online support group members (Facebook private support groups)

Whanganui DHB (2022, 2023) Taeamanino Trust (2022, 2023)

An active group of arthritis advocates is in place •

In 2022, the Terms of Reference for the consumer reference groups were established

•

Consumer reference groups for osteoarthritis and inflammatory arthritis are in place and provide a consumer voice on issues and resources

•

Pacific Community Coordinator works with Health Quality and Safety Commission as a Consumer Committee member 5

2

3

Equity- moving from talking to action

2023

2022

2023

2022

Arthritis Assist launched and 822 clients used the services

Development of Arthritis Assist as new model of service delivery

Te Kawa programme developed as first step in organisational embedding

Online automated survey of Arthritis Assist clients shows an 87% rate of satisfaction or above

Development of a client survey to be used to evaluate Arthritis Assist service

Development and delivery of Te Kawa o Mateponapona Aotearoa with Staff and Board participation in Te Kawa workshops

Appointment of Health Equity manager

Evaluation of Porirua Gout Project in Porirua underway

Active partnership with the Gout arthritis groups

Staff survey results showed staff were enthusiastic about Te Kawa training Partnerships with Māori and Pacific providers in place in Porirua

Partnerships with Mahitahi/ Whanganui, Canons Creeks Pharmacy, Waitangirua Pharmacy in Porirua

4

6 6

Developing, delivering and measuring services

Research- proactive and translational programmes including clinical, social and economic research

5

Generating funding

2023

2022

2023

2022

21 grant applications received – 6 funded ($405,706).

Reestablishment of External Grants programmes – 11 applications with 3 funded ($76,026)

Digital fundraising campaigns developed

Lupus/Postdoctoral Fellowship published first research providing updated information about Lupus in New Zealand

Inaugural appointment of New Zealand Lupus/SLE Postdoctoral Fellowship

Development and implementation of a Challenge to raise awareness of the everyday difficulties experienced by those with arthritis

The full SSP can be viewed here

Intiative one

Initiative 1

Building awareness 7

The stories and people behind the statistics Building awareness, partnership and consumer voices Building our digital activities and services is a primary focus for Arthritis New Zealand with our web site visitors being the single largest interaction consumers have with us.

However, our digital presence is not just our website - we are active on various social media platforms and our private online Facebook groups now number thousands of followers.

Our Online Health Advisor actively responds to queries, develops new content when consumer demand requires, runs webinars, and works with Arthritis Assist staff to run the popular monthly Zoom cafes that give people a chance to connect on-line with others.

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Arthritis New Zealand | Annual Review 2023

Online support groups - an example of group members sharing information and supporting each other.

Anna

Miriam I have the same problem. I know your pain as I can barely straighten my hands until about 11am.

Hot water helps. The gloves didn’t really help that much – I am just starting on CBD oil – a lot of people say that works! I hope it does, apparently it takes 2-3 weeks to kick in- will give you an update at some stage.

I am new to the group and want some ideas about a problem I have just noticed. If I don’t change my hand position frequently enough my fingers feel like they almost are not going to move at all. If I have them bent it’s difficult to straighten them and vice versa. Do you have the same problem?

Maria

Do let us know how you get on with CBD.

Miriam

Amanda

Will do. I wear wool gloves at night- keeps my hands open.

Thanks for bringing this up - it is really good to know that I am not the only person with this problem. Thanks for sharing.

Elinor This group is amazing for help me feel better about my evolving situation. It can all happen so suddenly and your responses really do help me.

Andrew

Have you tried compression gloves? I have some of these but they are not compression-y enough!!!

I wear splints on both hands which was recommended by my rheumatologist and the hand therapist. Definitely helps a lot.

Alison

Anna I know how you feel - I’ve just got told two months ago which was good in a way cos it explained so much. Hearing what others are going through is so helpful.This is an amazing group to learn more about the RA that we have.

Andrew

This problem is absolutely normal unfortunately. I have found flexing and moving my hands in a sink of warm water for about a minute or so, several times a day helps.

Anna This is so helpful - good to know that it is normal!

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One aspect of our services is the development of partnerships with other organisations.

One new partnership has been with Healthify (previously Health Navigator). They have provided a GP who reviews all information used when we develop resources for Arthritis Assist. This review process ensures clinical oversight of the information we provide - a vital component ensuring that Arthritis Assist information is accurate and up to date.

Consumer voices Arthritis NZ has a long-standing association with the New Zealand Rheumatology Association (NZRA), who provides Arthritis NZ with advice on clinical issues through its nominated clinical advisor to Arthritis NZ. Our partnership with NZRA extends to shared development, also with New Zealand Health Professionals in Rheumatology (NZHPR), of a highlevel plan to guide the future of Te Whatu Ora Rheumatology services in Aotearoa New Zealand. Forums for patient concerns about access to rheumatology services and medications include informal meetings, attendance at conferences and ad hoc meetings where issues of current interest are shared and discussed.

We have also continued a longstanding partnership with the National Pediatric Rheumatology Service. We work with them to organise and run our annual camps for both teens and children with arthritis (and their families).. See page 21 for stories about our camps.

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Arthritis New Zealand | Annual Review 2023

Giving a voice to consumers is an increasingly important component of our activity and over the past year a Consumer Reference Group has been formed. The group consists of people who live with arthritis who are keen to ensure that consumer voices are heard and incorporated into the organisation.

This is done by commenting on resources and topics covered online, website content, making submissions or involvement in policy development. The group consists of people with different forms of arthritis and has been involved in developing questions and issues for political candidates and giving feedback on the development of MyRA, an online program for people with rheumatoid arthritis coming in the next financial year.

Scott talks about living with rheumatoid arthritis.

Scott is one of the members of our Consumer Reference Group. He has had a hard journey navigating living with rheumatoid arthritis and the impact it can have on all aspects of life including mental health.

“My journey through rheumatoid arthritis started with my mother. She was diagnosed with rheumatoid arthritis when my sister was born 48 years ago and, in those days, there was only aspirin. I remember as a child listening to my mother scream and cry with so much pain and listening to her scream to the people that she loved. Not being able to hold my baby sister, not being able to put a pin into her nappy.

My own story started 22 years ago when I was diagnosed.

I noticed that my knee and elbows were getting sore. I was keeping my symptoms hidden. I got through it for about 9 years and then decided to go farming. I ended up losing my job on the farm and living in a rented house in Tauranga”.

After a number of confronting issues Scott found himself “at the Rotorua Arthritis hospital and learning what to do with my mind and my medication and finally got it sorted”.

“I then moved into my parent’s place and my mother suggested I become a social worker. Because of my dyslexia I had to prove to myself and others that I could get my degree even though I had to work harder than everyone else. I did get my bachelor’s degree in social work.

This is only part of my story but I want to say that having rheumatoid arthritis can bring mental health problems and marriage break ups. We need more specialists and nurses, but we also need social workers to help you move forwards and recognise that it’s not just the body we need to think about – it is also the mind you need to empower.“

His is a consumer voice we need to hear.

Annual Review 2023 | Mateponapona Aotearoa 11

Intiative one

Initiative 2

Effectiveness

Developing delivering and measuring the effectiveness of our progammes and services The development of Arthritis Assist as our new model of services was an outstanding achievement of the past year.

It is a comprehensive service providing information, education, and support. It guides people through concerns such as pain management, how to work well with health professionals, helping clients to stay active and increasing understanding of their arthritis and its management.

The service provides comprehensive resources on all aspects of the management of arthritis, individually tailored to the client’s diagnosis, location, and in a format that is accessible for them.

Not all clients easily access online resources, so we ensure that paper copy is always available. Access to Arthritis Assist can be through our 0800 number, email, social media or a website enquiry. Where we are able, we can also attend face to face events.

Our information resources are reviewed by a GP under the umbrella of Healthify (formerly Health Navigator) ensuring the information we provide is clinically accurate.

Annual Review 2023 | Mateponapona Aotearoa 13

Client survey results These surveys enable us to receive regular feedback from clients and this helps us develop the service and the resources we provide.

During the year we automated a client survey that is sent out to Arthritis Assist clients so we can monitor the development of the service and see where we can make improvements.

This has been in place since October 2022 and the results are very encouraging.

Of the 664 surveys sent out we had a 30% response rate. The results showed:

86% of respondents were either satisfied or very satisfied

91% of respondents found the service either helpful or very helpful

Feedback received included: “Very friendly and easy to discuss things with.”

“The Arthritis Assist team member responded to my concern and suggested some helpful ideas for our residents. She also sent me useful information on arthritis that I could share with my team members. I introduced some physical exercises to a resident.”

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Arthritis New Zealand | Annual Review 2023

“I’m very happy with the help I received. The printed info was very informative, but the best thing you provided was the link to ‘My Joint Pain’.”

“Managing my pain so I can go to sleep.”

“I found the website annoying because I had to follow a link to each bit of information. I lost interest in a short amount of time. I much preferred the book you sent. The lady on the phone was very helpful.”

Arthritis Assist in Taranaki Promoting Arthritis Assist in Taranaki was the first step towards our mission to raise awareness about our services in regions with limited access to arthritis care and resources.

The goal was to empower both individuals living with arthritis and health providers who provide support as best they can to their patients, by providing them with valuable resources and support to live well and thrive despite their condition.

Taranaki is home to approximately 18,000 people grappling with arthritis, and the existing healthcare system, including rheumatology, orthopedic services and GP practices is overwhelmed. Over the past five years, patients in Taranaki have been experiencing prolonged waiting periods, with an average wait time of more than 20 weeks to see an orthopedic surgeon following a referral from their GP. Moreover, nearly half of the patients referred to the rheumatologist for diagnosis have not been seen within the required four-month timeframe outlined in Te Whatu Ora planned care.

Arthritis NZ’s pilot programme in Taranaki represents a proactive effort to address the existing gaps in arthritis care services. By raising awareness and extending the reach of Arthritis Assist, the organisation aims to ensure that individuals and at-capacity health centres have the necessary resources and support to manage their arthritis effectively.

This work was supported by the Toi Foundation.

Arthritis NZ aims to bridge the gap in care by providing a specialised service tailored to the needs of individuals with arthritis. The Arthritis Assist programme offers a lifeline of information, guidance, and support for those navigating the challenges of arthritis. By connecting with the Arthritis Assist Team, individuals gain access to a wealth of resources and assistance to help them better manage their condition and improve their quality of life.

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Some stories from clients and our work with them Miriam – managing osteoarthritis Miriam has osteoarthritis in her hands and neck and has found our help and support to be invaluable. She remembers calling us when she was first diagnosed some years ago and receiving great advice and information about managing her arthritis. At the time she was a Special Education teacher and was using her hands a lot working with special needs children. She also had difficulty driving and dressing and found the cold seemed to make her arthritis more painful.

She was recommended in the late 1990s to join a community exercise group and continues to go to exercise classes twice a week to this day.

Exercise in warm water was also suggested and she found that also very helpful and goes to the pool regularly. Miriam also tries to walk each day and loves living in an area where she is near the countryside and beautiful parks.

The advice to get up and move really helped her and she is a strong advocate of moving and exercising as much as possible. Heat also helps - she uses a wheat bag and also takes painkillers regularly.

Miriam has been so impressed with the help and information available from Arthritis NZ that she has become a regular donor. Most of all she knows we are only a phone call away.

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Arthritis New Zealand | Annual Review 2023

Urate crystals accumulate in the joints to cause gout arthritis

Jenny learns about gout arthritis Jenny is a middle-aged woman of Māori descent and joined a course about gout arthritis as she wanted to learn more about it as she has had it for as long as she can remember.

It runs in her family, and she was focused on eating as the key to managing it. She used an anti-inflammatory when she felt gout arthritis coming on and did not want to take regular medication for it.

Georgie, our Youth and Community Coordinator in Taranaki presented the course and tells Jenny’s story...

“When I presented, I used our new course and some of our videos to explain the impact of gout arthritis. I noticed as I played a video clip Jenny looked quite upset and a little bit shocked. I made sure to talk with her after the presentation and she burst out crying saying she was so happy to finally understand WHY it’s important to have her uric acid lowered and the positive impact this would have on her overall wellbeing. She remembers a pharmacist linking, “heart disease, kidney disease, and life expectancy”. Both her dad and grandad passed away very young due to poor health and she wanted to be different.

I’ll keep in touch with Jenny, but she literally booked a blood test for this week and is looking forward to tracking her uric acid levels and not having to take an anti-inflammatory. She was very thankful for our information and support”.

Jenny’s story is a good example of the need for education about the causes and management of gout, and clear, easily understood explanations. The video clip that was played at this presentation is here:

Annual Review 2023 | Mateponapona Aotearoa 17

Arthritis Assist Team Lead, Tory, taking client calls

Carol tells how she came to manage her rheumatoid arthritis I am 62 years old, previously biked 10 kms to work each day, spent weekends tramping in the backcountry, attended advanced mat Pilates classes for 15 years, working around the lifestyle block – fencing, wood splitting, and all sorts of chores. My son commented only a short while before that he didn’t know any other people my age that were as agile, fit, supple and healthy. No set GP as there was no reason to go to the doctor. No medications. Healthy lifestyle and diet, minimal fats, sugars, takeaways and preserves by choice.

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Arthritis New Zealand | Annual Review 2023

My first introduction to rheumatoid arthritis was at the beginning of May 2023 with an acute flare up of inflammation and excruciating pain, particularly in my hands and shoulders.

Sleeping was a nightmare, dozing off for between 30 minutes and one-and-a-half hours at a time and waking with excruciating pain. With pain in my shoulders and hands, finding a sleeping position was nigh on impossible. Impossible to do simple tasks around the home, no strength in hand grip making opening jars and bottles difficult to impossible.

For three months I had no idea what was happening to my body. I googled and self-diagnosed all sorts of diseases.

Trying to avoid mainstream medications I went to a homeopath, osteopath, Contact CARE therapist and metaphysics therapist trying to resolve issues myself.

My GP requested many blood tests to find a cause for my symptoms and I eventually received an rheumatoid arthritis diagnosis. I was then referred to the rheumatology specialist for treatment, waiting a further three weeks for this appointment.

By this time, I had really run out of options. In desperation I thought to contact Arthritis NZ who were great. This was the first contact I had had with anyone that had dealings firsthand with rheumatoid arthritis. My relief was immediate and immense!

Arthritis Assist sent out an information pack that contained a fantastic and practical flip chart of simple hand and body exercises that targets the spots in the body where arthritis is most prevalent and debilitating, encouraging you to improve movement and flexibility and hopefully help reduce inflammation. Tory informed me about the rheumatoid arthritis Facebook private support group. It was a reality check to read into the lives of others affected by this debilitating disease and in how many ways it presents.

A rheumatoid arthritis sufferer also passed my name on to another person who has been an rheumatoid arthritis sufferer for over 20 years. Her phone call to me a few days later was gold! I asked her many, many questions that had arisen for me over the months and she put my mind to rest about these and the treatment process and possible outcomes from her personal experience. Therefore, when I had my first specialist appointment, I was forewarned with correct firsthand information and not with often conflicting ‘google research’.

My story is not finished as it is a lifetime disease and requires ongoing management.

The point of this story is that until I contacted Arthritis NZ, I felt pretty much on my own about finding out how to get through the day and function at work. It is the empathy and first-hand knowledge and information from experienced people at Arthritis NZ and others who have rheumatoid arthritis that I believe make this organisation so worthy of any support (financial and otherwise) they can possibly obtain for further research and support to the many rheumatoid arthritis sufferers in NZ. There are potentially many people affected by rheumatoid arthritis who in some cases may have little or no support from their immediate non-medical contacts/family.

Like many organisations they are constantly struggling to find current and ongoing funding. They have my full support and without them I would really have felt up the creek without a paddle!

Annual Review 2023 | Mateponapona Aotearoa 19

Working with men: from our Pacific Community Coordinator Wellington Rugby League Masters Health Hauora was an initiative to promote health services to men – in particular Māori and Pacific men whose playing days were over – often when health issues such as obesity, diabetes, gout and high blood pressure can mount up.

We were invited to participate because of the gout arthritis community pharmacy work we deliver. The kōrero covered management of medication, lifestyle and diet with an emphasis on why participants would benefit from regular health checks. We provided uric acid tests for 33 men and promoted the community gout program at Cannons Creek and Waitangirua Pharmacy.

Some of the voices from the day were: Pacific father and son: Father lived with preventive gout medication and son was complaining of recent pain in his right toe. Our education helped the son understand that gout arthritis is a debilitating inherited genetic disease and he was motivated to make an appointment to see a GP and have a blood test.

A 63-year-old Māori man with gout arthritis and other long-term conditions who we helped to understand the link between gout arthritis and kidney disease.

A 60-year-old Māori man living with gout told his story of living with gout arthritis and using long term preventive medication which has kept him gout free for years.

20 20

Pacific Community Co-ordinator Zechariah Reuelu with clients at this event

Camps Last year, after taking advice, we cancelled our teens and family camps due to ongoing restrictions at the end of 2021 caused by COVID-19 and our caution about exposing immuno-compromised young people to travelling and being exposed to the virus.

This year, we were delighted to run both camps again working with the National Pediatric Rheumatology Service. We also acknowledge support from Abbvie, Sutherland Self Help Trust, .C.A.S.T, Constellation Communities Trust Ltd, and Riccarton Rotary Youth Trust. We were also delighted to receive proceeds from the Sharp and Arthritis NZ Golf Day and donations from kind individuals in our community of donors.

Our Teen Camp was the last weekend of January and had participants from all over the country attending. Fifteen teens and seven youth leaders, all with arthritis, arrived in Wellington to join the weekend of fun and education. Some participants were first timers, others had been to camp before, and our youth advisory group played a key role in providing leadership for participants. Lots of friendships were made and support given during a weekend of team building, fun games and activities and sharing experiences about living with arthritis as a teenager.

The weekend was even more memorable as the Friday night of camp was the night of the Auckland floods, and wet weather affected activities focused on having wet weather fun. Building rafts in wet weather had its moments as rafts stopped working and broke in the middle of the lake.

Feedback from the Teens Camp showed that participants loved the camp. In fact, a number asked if it could be longer!

Comments from participants included: “Camp this year was great! We nailed it!”

“Camp proved to be a safe and reliable place for teens.”

“I wouldn’t change a thing!”

“Suggest more small group discussions and learning how to use pain management techniques while on camp.”

“More anticipation of possible wet weather activities.”

“Maybe put the younger ones that don’t know each other in a room together.”

“It was an amazing experience and attending camp is a highlight of my year.

Annual Review 2023 | Mateponapona Aotearoa 21

Our Families Camp was held in March at Totara Springs in Matamata and 22 children from all over the country, accompanied by a caregiver or parent participated, along with six youth leaders who all have arthritis and four staff from Arthritis NZ. Staff from the National Pediatric Rheumatology Service also attended and provided invaluable parent education sessions.

Families were delighted that the camp was held after two years of cancellation due to COVID-19. Parents had time to meet and talk with others and children had education sessions along with an array of fantastic activities such as rock climbing, slug guns, archery, raft building, waterslides and a top town competition that saw parents join the competition and provide lots of fun and laughter.

An extra bonus was the lovely warm weather that was very much enjoyed by campers, especially on Saturday afternoon when parents and children spent the afternoon enjoying both the company of others with arthritis alongside the water slides and swimming hole.

Feedback from the camp survey illustrated the very real benefits of the family’s camp.

Comments included: “The benefits of parents meeting other parents and finding a community they never knew or thought existed.”

“The value of educational presentations from the pediatric rheumatology service.”

“Open, honest Q and A with the children and youth leaders - and showing how isolating and hard it can be as a child with arthritis.”

“Children being comfortable with leaving their caregivers to take part in activities with youth leaders who led the planning of games and competitions.”

“More anticipation of possible wet weather activities.”

Thanks to the camp organiser Special thanks to Georgie-Anne Cox who organised both camps. This is no mean feat coordinating travel, liaising with participants and planning activities and schedules, checking all health and safety requirements are in place and many other details essential for camp to run smoothly and efficiently.

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Wonderful to have Rachel, Paediatric Rheumatology Physiotherapist, and Paediatric Rheumatologist Dr Priscilla Cambell Stokes leading education sessions at camp

Teens and children with arthritis - Camp 2023

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Intiative one

Initiative 3

Equity – continuing the journey

What is equity?

Equity is more than equality. Equity requires all people to have genuine access to services that are essential for their wellbeing but also recognises that some groups have consistently been under represented in being able to access these services.

The drive to establish true equity is not just a goal for health providers but encompasses a wide range of issues such as housing, education and training and access to social services.

Equity is important for many groups - ethnicity, disability, poverty and age are some factors that can impact the ability to access services.

For Arthritis NZ our focus is health and disability services and there are several factors that make it a major equity focus: • Gout arthritis is the second most prevalent form of arthritis in Aotearoa, and many people affected by it do not even know it is a form of arthritis.

• Māori and Pacific are genetically predisposed to being affected by arthritis and per capita New Zealand has the highest rate of gout arthritis in the world because of this.

• Despite this high rate of prevalence, Māori and Pacific with gout arthritis are underserved in the health system and often do not receive the medication necessary to manage gout arthritis.

This inequity has seen Arthritis NZ carefully looking at services for Māori and Pacific affected by gout arthritis. This has led us to recognise that different ways of working are essential to enable us to work effectively with Māori and Pacific to achieve true equity in service delivery for these populations.

We cover our work in Porirua on page 20 as an example of successfully engaging with a Māori and Pacific community affected by gout arthritis. This journey has led us to see the practical applications of Te Tiriti o Waitangi in this country and the need to incorporate understanding of it is the planning and delivery of social services.

Our journey has begun looking at our organisation and how we meet the challenge of embracing Te Tiriti, adopting a values and belief system that aligns with Te Tiriti, explicitly addressing health equity as a goal and developing a code of conduct for Arthritis NZ.

Annual Review 2023 | Mateponapona Aotearoa 25

Te Kawa o Mateponapona Arthritis NZ staff team

Our education and exploration of themes central to Te Kawa o Mateponapona has continued throughout the year.

In January 2023, we held our annual staff hui. This two-day event brings all Arthritis NZ staff together under one roof to build connections, foster inspiration and take part in some team building activities owed: We invited Donna Te Whiu who facilitated a fun and interactive session on the pronunciation of te reo Māori words and phonetics.

Later in the year, in June, Auckland staff took part in the Puāwai 4 Kaimahi full day workshop. Run by Manawaroa and designed to support kaimahi (workers) to uplift their resilience by sharing practical skills and knowledge that kaimahi can use to look after themselves to look after others.

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Arthritis New Zealand | Annual Review 2023

As our collective understanding has grown, the evolving themes and values of Te Kawa o Mateponapona are: Tautoko

Whanaungatanga

Tika

Pono

Whanau oranga

Ngakau whakaute

Whakarongo

Kotahitanga

Hapai nga matauranga hou

Kia kaha nga korero

Arongo whanoke

(to support and advocate for key stakeholders)

(self determined health and wellbeing)

(working together across our stakeholders)

(to respect and appreciate)

(everyone has a voice)

(to do the right and correct thing)

(to actively listen and hear)

(to act with honesty and integrity)

(working together in collective unity)

(innovation)

(learning new things)

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Intiative one

Initiative 4

Research

Key Research Projects Arthritis NZ Lupus / SLE Postdoctoral Fellowship • The development of research into Lupus (SLE) by Postdoctoral Fellow Dr Chunhuan Lao from the University of Waikato. Her first paper was published in the international peer-reviewed journal Lupus.

• Titled ‘Incidence and prevalence of systemic lupus erythematosus in New Zealand from the national administrative data sets’, this work provides significant information that signals a critical turning point in better understanding Lupus in New Zealand.

Key points in this paper are: • Updating the data on both the incidence and prevalence of Lupus in New Zealand. Incidence and prevalence are technical terms often used in research. Prevalence refers to the number of cases of a particular disorder, condition, or disease present in a population at a specific time.

Incidence on the other hand is the number of new cases of a disorder, condition, or disease over a period of time.

• Showing that the biggest increase in prevalence was in the elderly, probably because of improving life expectancy and advancing treatments for Lupus.

• Noting the increasing prevalence and incidence of Lupus in Pacific, Māori, and Asian populations. Over half of Māori and Pacific SLE patients lived in the most deprived areas, compared to 18% of Asians and 14.5% of Europeans.

This research provides an excellent foundation for furthering work in understanding and managing Lupus in the future.

Annual Review 2023 | Mateponapona Aotearoa 29

The development of MyRA Following the development of a New Zealand version of the successful MyJointPain online resource, an Australian online education program, we have been working on a similar project to adapt MyRA. This is an online education program for people with rheumatoid arthritis and we have worked closely with rheumatology nurses, rheumatologists and other allied health professionals to ensure that our adaptation is aligned with best practice management of RA in New Zealand. Consumers from the Arthritis NZ Consumer Reference Group also participated in the review drawing on their lived experience of rheumatoid arthritis.

This exciting initiative will be launched in late 2023.

Continuing our work with Osteoarthritis Aotearoa New Zealand We have been engaging with Osteoarthritis Aotearoa New Zealand (OAAoNZ), which is a group of researchers, clinicians, and allied health professionals working together with consumers to produce a new national osteoarthritis (OA) model of care for people with OA in New Zealand. Arthritis NZ has also supported the growth of a new consumer group to work with OAAoNZ to bring with them their experiences of living with OA. OAAoNZ organised the inaugural New Zealand Osteoarthritis Summit in Wellington in November 2022 to look at how we can improve the management of OA. The opening address was from Dr Andrew Connelly, Counties Manukau Chief Medical Officer and Chair of the government-appointed Planned Care Taskforce, which focused on looking at how waiting lists can be better managed.

He highlighted that one of the challenges in doing this is to ensure nationally consistent criteria for prioritising placement on waiting lists.

He also emphasised the importance of knowing the overall needs so there can be equitable management of resources and provision of care across regions. World OA expert Professor David Hunter of the University of Sydney/Royal North Shore Hospital shared lessons from the Australian development of a model of care for OA. He emphasised that one of the keys to developing good OA care is strong linkages between health professionals, consumers, and advocacy organisations. This inclusivity has been pivotal.

Philip Kearney our CEO, spoke on the NZIER report on the case for investment in non-surgical guideline-informed models of care for OA of the hip and knee and Dr Richard Griffiths, Research Manager at Arthritis NZ, addressed the significance of the consumer voice and the central role that consumers with OA will play in work being done to produce a national osteoarthritis model of care. His presentation featured video clips from people with OA who are part of Arthritis NZ’s Consumer Reference Group. They shared their lived experience of OA and provided an essential consumer voice.

30 30

Summer Scholarships 2022-2023 Mickey Ma

Julia Rennie

Investigating the experience of podiatrists providing podiatry care to people with foot osteoarthritis

The experience of people with gout on the impact of gout flare triggers: a qualitative interview study

Student: Mickey Ma, Auckland University of Technology (AUT)

Student: Julia Rennie, 3rd year undergraduate podiatry student, Auckland University of Technology (AUT)

Supervisor: Prue Molyneux, Lecturer, Department of Podiatry, AUT

How Will the Study Potentially Benefit People Who Have Arthritis?

Mickey’s study provides an opportunity to detect prognostic markers of osteoarthritis (OA) earlier than at present through investigating podiatry practitioners’ experiences of diagnosing and treating foot OA. It may also directly impact the financial burden for people with foot OA by reducing financial costs associated with the loss of productivity, time delays and number of healthcare appointments.

Primary Supervisor: Dr Sarah Stewart, Senior Lecturer, Department of Podiatry, AUT

How Will the Study Potentially Benefit People Who Have Arthritis?

Julia’s study will offer a better understanding of how patients who are over 20 years old change their everyday lives to avoid events or things that trigger gout flares and, in turn, how these modified behaviours impact them. Insights from the study could also be potentially used for advocacy around the role of urate lowering therapy, along with trigger avoidance behaviours to help with the long-term management of gout.

Annual Review 2023 | Mateponapona Aotearoa 31

Libby Anderson

The association between dynamic plantar pressure and sonographic evidence of metatarsophalangeal joint synovitis in people with rheumatoid arthritis Student: Libby Anderson (Ngāti Maniopoto-Waikato), 2nd year podiatry student, Auckland University of Technology (AUT) Primary Supervisor: Dr Sarah Stewart, Senior Lecturer, Department of Podiatry, AUT

How Will the Study Potentially Benefit People Who Have Arthritis?

Libby’s study will be the first to assess the relationship between so-called “power doppler detected synovitis” and plantar pressure in people who have rheumatoid arthritis. In addition to providing important new knowledge, the proposed approaches used in her study may also inform the potential role of the use of ultrasound imaging by podiatrists. She and her colleagues hope their study will also benefit patients by a reduction in the burden of numerous clinician visits and the facilitation of more focused patient management plans.

32

Arthritis New Zealand | Annual Review 2023

Intiative one

Initiative 5

Funding

How grant funding organisations make a difference Grant funding organisations enable us to deliver projects and programmes around New Zealand.

An example of the significant work we can undertake because of grant support is illustrated by the grant received from the Toi Foundation.

For over 35 years, Toi Foundation have committed to supporting communities to build a thriving, inclusive and equitable Taranaki.

This grant contributed to funding our Rural Support Project in Taranaki.

It enabled us to run a series of workshops throughout Taranaki to provide educational resources and information on how to effectively manage arthritis. These workshops targeted people of working age who had been involved in primary industries, farming or factories and were particularly susceptible to osteoarthritis and gout arthritis.

Through our workshops we provided valuable information, and helped participants make valuable connections with each other and build support networks. We also strengthened relationships with rural health providers and saw a notable increase in the numbers of people from Taranaki contacting our Arthritis Assist programme.

34

Arthritis New Zealand | Annual Review 2023

Feedback from participants was overwhelmingly positive with people finding the resources and packs we provided to be extremely helpful in their daily lives.

The funding from Toi Foundation made this work possible and is a great example of a funder helping us to make a real difference.

Pathfinder - a win-win funding opportunity Arthritis NZ is one of Pathfinder’s charity partners. They donate 20% of their Kiwisaver management fee to charity partners such as Arthritis New Zealand. Over the last two years we have received almost $14,000.

We encourage people to consider joining their Kiwisaver Plan. The more people that join and select Arthritis NZ as their chosen charity the more funding we receive.

Pathfinder is a Kiwi owned ethical fund manager and KiwiSaver provider that believes no one should have to choose between a profitable investment and an ethical one.

About Pathfinder Pathfinder’s vision is for our investing to fund a lasting transformation to a better world. They do this by seeking to generate individual wealth and collective well-being. Starting by avoiding investments that do not respect people, animals or the planet. They then consider environmental, social and governance (ESG) metrics, as companies that address ESG issues often perform better than companies that do not.

They don’t stop at ESG, they also tilt their portfolio towards positive investment themes - such as renewable energy and community housing. And aim to grow your wealth via good investments in areas such as healthcare, water infrastructure and technology.

Annual Review 2023 | Mateponapona Aotearoa 35

Bequests

Grants

Edith Lillian Grace Tongue Trust

Akarana Community Trust Ltd

Estate Audrey I Gibson

BlueSky Community Trust Ltd

Estate Fraser Alexandra Mackay Estate Joan Florence Kane Estate John & Elsie Walsh Trust Estate Marie Harding Estate of Clare Hodgson Estate of Colin Armishaw Estate of Frances Muriel Powell Estate of Joan Beverley Bowring Estate of Kathleen O’Malley Estate of Leonard Allan Frontin-Rollett Estate of Lyndsey Alison Leask Estate of Malcolm Bridge Estate of Michael David Ferns Estate of Molly Cuddihy Estate of Rosemary Anne O’Connell Estate of Susan Mary Branch Estate of Wiebren Herder Estate RF Bowden Keith Malcolm Leonora Knapp Trust Maisie Hayes & Charlie Warr Memorial Trust Murray Rider Terry Jones The Charles & Vera Thrush Charitable Trust William Crump

CERT Your Local Gaming Trust Ltd (Kiwi Gaming Foundation) Constellation Communities Trust Ltd Four Winds Foundation Milestone Foundation NZ Lottery Grants Board Pelorus Trust Rano Community Trust Riccarton Rotary Youth Trust A D Hally Trust Aotearoa Gaming Trust Ara Lodge No 348 I.C. Charitable Trust Board Canterbury Arthritis Support Trust (CAST) Doris M Partridge Charitable Trust Estate of Doris Elizabeth Lane Frances Skeet Charitable Trust Hilda Curtis Charitable Trust Irene Phyllis Munro Charitable Trust Jack Jeffs Charitable Trust Nikau Foundation Pathfinder Asset Management Ltd Pub Charity Ltd The Lion Foundation Toi Foundation W N Pharazyn Charitable Trust Zelda Roberts Charitable Trust Taranaki Apepsi Trust AbbVie Limited

36 36

The Charles & Vera Thrush Charitable Trust

Principal sponsors and funders We gratefully acknowledge the support of our principal sponsors and funders.

37

Chair’s report Reflecting on the past year shows some key trends that will be ongoing in the current environment.

First, is the evolving health sector- an evolution that will continue as our country grapples with the shape and priorities of an under-pressure health sector. For many of our clients accessing primary healthcare continues to be challenging often involving long waiting times to access health servicesespecially in rural and more remote areas. We are acutely aware of this problem- a problem we will keep drawing attention to and working with others to solve.

Second is the strong call for equity in the health system. This call resonates strongly with us, as gout arthritis is the second most prevalent form of arthritis and disproportionately affects Māori and Pacific due to genetic factors. We accept the challenge of working with other providers to improve our services to Māori and Pacific communities.

Rebecca Roberts Chair

Third is ongoing development of digital services and information as a significant component of service delivery. We have devoted more staff resource to continuing to grow this activity and anticipate this trend will accelerate as our world adapts to online information as the norm. The growth of new online tools and programs is ever increasing and we need to engage with and determine how we best utilise it. We know it will be ever changing, and new forms such as AI, will need to be understood and harnessed.

However, while we monitor and adapt to these changing trends, we must never lose sight of our main goal which is to improve the lives of people affected by arthritis - be they clients, volunteers, donors, health professionals and corporate supporters. I would like to thank the staff of Arthritis NZ and all of the volunteers who work tirelessly to make it possible for those with arthritis to live better lives.

38 38

My personal thanks to our Trustees who are an energised and focused body who give sterling service in their capacity as volunteers who go the extra mile. It is a privilege to be working with you.

CEO’s report Living Well with arthritis is the theme of this annual report and that theme is reflected in the programmes and activities of the past year.

As we are in a changing landscape with ongoing changes in the health system, the advantage of being a united national organisation is evident and gives us an important advantage.

One activity that it is very pleasing to see is the development of our Consumer Reference Group. This group all have lived experience of arthritis, and their experiences and perspectives will be an increasingly important part of our resources developed and submissions we make.

One important activity is our ongoing participation in a number of community and health providers.

Philip Kearney CEO

Arthritis Assist is our flagship programme providing assistance, information and support for people with arthritis. It is all about Living Well – including information on a wealth of topics such as healthy eating and exercise, learning to work with your health professional team, preparing for appointments, understanding and navigating the health system. One particularly important part of our service is sharing stories to encourage others to know they are not alone. We have a strong online community who support each other and often share experiences both good and not so good.

Our research activity continues to develop and make an increasingly important contribution to the wider research community. One highlight has been the work of our Dr Chunhuan Lao the Arthritis New Zealand Lupus/SLE Post Doctoral Fellow. Dr Lao presented her initial research to the annual meeting of the New Zealand Rheumatology Association. This research is summarised on page 29 and marks real progress towards improving our knowledge and understanding of lupus.

Thanks are due to many people who are the backbone of our organisation- donors, volunteers, health professionals, sponsors – your ongoing support is the glue that holds us together.

A special thanks also to our staff who work tirelessly to ensure that we are indeed showing the way to Living Well with arthritis.

39

2023 Board of Trustees Rebecca Roberts (Chair) Appointed Trustee 1/7/2018

Ben Blinkhorne

Ben Sutherland Appointed Trustee 27/11/2020

Sue McGlashan Appointed Trustee 26/11/2021

Appointed Trustee 24/11/2018

Richard Edge (Deputy Chair) Appointed Trustee 7/3/2019

Peg Lockyer Appointed Trustee 29/11/2019

Jacob Toresen Pollock Appointed Trustee 29/11/2019

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Arthritis New Zealand | Annual Review 2023

Simon Stebbings (Rheumatologist - NZRA Representative) Appointed Trustee 1/3/2023

Peter Jones (Rheumatologist - NZRA Representative) Retired from Board 30/11/2022

Arthritis New Zealand (Mateponapona Aotearoa) Summary financial statements for the year ended 30 June 2023 Summary Annual Report This is a summary of Arthritis New Zealand (Mateponapona Aotearoa)’s (the Trust’s) audited financial statements for the year ended 30 June 2023 which were authorised for issue on 18 October 2023. The summary financial report has been extracted from the full audited financial statements for the year ended 30 June 2023.

The summary financial statements have been prepared in accordance with PBE FRS-43 – Summary Financial Statements. The full financial statements have been prepared in accordance with generally accepted accounting practice and they comply with Public Benefit Entity International Public Sector Accounting Standards (PBE Standards) and other applicable Financial Reporting Standards, as appropriate for Tier 2 not-for-profit public benefit entities.

The Trust has made an explicit and unreserved statement of compliance with Public Benefit Entity International Public Sector Accounting Standards (Tier 2 PBE Standards) in note 1 of the full financial statements.

The summary financial report cannot be expected to provide as complete an understanding as provided by the full financial statements of financial performance, financial position, recognised income and expenses and cash flows of the Trust. A copy of the full financial statements can be obtained from the website www.arthritis.org.nz.

The auditor has examined the Summary Financial Statements for consistency with the audited financial statements and has the opinion that the information reported in the summary financial report complies with PBE FRS43 summary Financial Statements and is consistent in all material respects, with the full financial report from which it is derived.

The going concern basis of preparing the financial statements has been used. In preparing the financial statements on a going concern basis, the Trust has continued to apply the measurement, recognition and disclosure requirements of the PBE FRS-43 Standards.

Annual Review 2023 | Mateponapona Aotearoa 41

Statement of Comprehensive Revenue and Expense for the year ended 30 June 2023

2023 $000’s

2022 $000’s

1,131

1,543

593

576

-

1

350

333

2,074

2,452

Fundraising Costs

309

324

Expenditure on Services and Programmes

965

1,058

Total Assets

Administration expenses

938

901

Liabilities

9

7

Research grants awarded

289

Depreciation and Amortisation

Contributions from the Community Income from Services and Programmes

2023 $000’s

2022 $000’s

Property, Plant and Equipment

369

369

Intangible Assets

126

161

10,128

10,445

Trade and Other Receivables

69

104

Cash and cash equivalents

341

260

11,033

11,339

Employee Benefits

136

156

132

Trade and other payables

125

126

67

69

Revenue in Advance

-

31

2,577

2,491

261

313

(503)

(38)

249

(1,289)

Trustees Funds

413

825

(254)

(1,327)

Research Funds

6,974

7,093

Other Special Purpose Funds

1,486

1,458

Investment Fair Value Reserve

1,899

1,650

Total Equity

10,772

11,026

Total Equity and Liabilities

11,033

11,339

Statement of Cash Flows for the year ended 30 June 2022

2023 $000’s

2022 $000’s

Net Cash Flows from Operating Activities

(803)

(395)

Net Cash Flows from Investing Activities

884

413

Net increase (decrease) in cash held

81

18

Depreciation Recovered Net Finance Income

Governance Costs

Operating Surplus (Deficit) Net change in fair value of investments Total Comprehensive Revenue and Expense for the year

Statement of Changes in Equity for the year ended 30 June 2022

2023 $000’s

2022 $000’s

Opening Equity Balance

11,026

12,353

Surplus (Deficit) for the year

(503)

(38)

Other Comprehensive Revenue & Expense

249

(1,289)

(254)

(1,327)

10,772

11,026

Total Comprehensive Revenue and Expense Closing Equity Balance

Statement of Financial Position as at 30 June 2022 Assets

Investments

Total Liabilities Equity

Independent Auditor’s Report

Independent Auditor’s Report To the beneficiaries of Arthritis New Zealand (Mateponapona Aotearoa)

Report on the summary financial report

Opinion

ToInthe beneficiaries of Arthritis New Zealand (Mateponapona Aotearoa) our opinion, the accompanying summary financial The accompanying summary financial report report of Arthritis New Zealand (Mateponapona

comprises:

Report summary financial report Aotearoa)on (thethe ‘trust’) on pages 41 to 42: i. Has been correctly derived from the audited trust financial report for the year ended on 30 June 2023; and

Opinion

— the summary statement of financial position as at 30 June 2023;

— the summary statements of comprehensive

revenue and expense, changes in equity and cash flows for the year then ended; and ii. Is a fair summary of the trust financial report, in The accompanying summary financial report Inaccordance our opinion, the accompanying summary with PBE FRS 43 Summary Financial — thefinancial summary statement of service Statements. performance on pages 4 to 6. comprises: report of Arthritis New Zealand (Mateponapona

Aotearoa) (the ‘trust’) on pages 41 to 42:

— the summary statement of financial position as

at 30 June 2023; i. Has been correctly derived from the audited Basis for opinion trust financial report for the year ended on 30 — the summary statements of comprehensive We conducted our audit in accordance with International Standard on Auditing (New Zealand) (ISA (NZ)) 810 June 2023 ; and revenue and expense, changes in equity and (Revised), Engagements to Report on Summary Financial Statements.

cash flows for the year then ended; and

ii.areIs a fair summary ofaccordance the trustwith financial report, in Standard 1 International Code of We independent of the trust in Professional and Ethical Ethics for Assurance Practitioners (Including International Independence Standards) (New Zealand) issued by the accordance with PBE FRS 43 Summary Financial theBoard summary statement of service New Zealand Auditing and Assurance Standards Board and the International Ethics Standards for Statements.

Accountants’ International Code of Ethics for Professional Accountants (including International Independenceon pages 4 to 6. performance Standards) (‘IESBA Code’), and we have fulfilled our other ethical responsibilities in accordance with these requirements and the IESBA Code.

—

Other than in our capacity as auditor we have no relationship with, or interests in, the trust.

for opinion UseBasis of this Independent Auditor’s Report This report is made solely to the beneficiaries as a body. Our audit work has been undertaken Annual so that we might 2023 | Mateponapona Aotearoa 43 We conducted our audit in accordance with International Standard onReview Auditing (New Zealand) (ISA (NZ)) 810 state to the beneficiaries those matters we are required to state to them in the Independent Auditor’s Report (Revised), Engagements to Report on Summary Financial and for no other purpose. To the fullest extent permitted by law, we do not acceptStatements. or assume responsibility to anyone other than the beneficiaries as a body for our audit work, this report, or any of the opinions we have

formed.

We are independent of the trust in accordance with Professional and Ethical Standard 1 International Code of

Standards) (‘IESBA Code’), and we have fulfilled our other ethical responsibilities in accordance with these requirements and the IESBA Code.

Other than in our capacity as auditor we have no relationship with, or interests in, the trust.

Use of this Independent Auditor’s Report This report is made solely to the beneficiaries as a body. Our audit work has been undertaken so that we might state to the beneficiaries those matters we are required to state to them in the Independent Auditor’s Report and for no other purpose. To the fullest extent permitted by law, we do not accept or assume responsibility to anyone other than the beneficiaries as a body for our audit work, this report, or any of the opinions we have formed.

Responsibilities of the Trustees for the summary Financial report The Trustees, on behalf of the trust, are responsible for:

— the the preparation preparation and and fair fair presentation presentation of of the the summary summary financial financial report report in in accordance accordance with with PBE PBE FRS FRS 43 43

Summary Financial Statements; and © 2023Summary KPMG, a New Zealand Partnership and a member firm of the KPMG global organization of independent member firms affiliated with KPMG International Limited, a private English company Financial Statements; and limited by guarantee. All rights reserved.

implementing necessary necessary internal internal control control to to enable enable the the preparation preparation of of aa summary summary financial financial report report that that is is — implementing correctly correctly derived derived from from the the audited audited financial financial report. report.

Auditor’s Responsibilities for the summary financial report Our Our responsibility responsibility is is to to express express an an opinion opinion on on whether whether the the summary summary financial financial report report is is a a fair fair summary summary of of the the audited financial financial report report based based on on our our procedures, procedures, which which were were conducted conducted in in accordance accordance with with International International audited Standard on on Auditing Auditing (New (New Zealand) Zealand) (ISA (ISA (NZ)) (NZ)) 810 810 (Revised), (Revised), Engagements Engagements to to Report Report on on Summary Summary Financial Financial Standard Statements.

Statements.

We expressed expressed an an unmodified unmodified audit audit opinion opinion on on the the financial financial report report in in our our audit audit report report dated dated 18 18 October October 2023.

2023.

We The summary summary financial financial report report does does not not contain contain all all the the disclosures disclosures required required for for aa full full financial financial report report under under The generally New Zealand.

Reading the the summary generally accepted accepted accounting accounting practice practice in in New Zealand. Reading summary financial financial report report and and the the auditor’s auditor’s report report thereon, thereon, therefore, therefore, is is not not aa substitute substitute for for reading reading the the audited audited financial financial report report of of the the and and the the auditor’s auditor’s report report thereon. thereon. The The summary summary financial financial report report and and the the audited audited trust trust financial financial report report do do not not reflect reflect the the effects effects of of events events that that occurred occurred subsequent subsequent to to the the date date of of our our report report on on the the audited audited financial financial report. report.

KPMG KPMG Wellington Wellington 28 28 November November 2023 2023

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Arthritis New Zealand | Annual Review 2023

Annual Review 2023 | Mateponapona Aotearoa 45

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