is aArthritis is aArthritis challenge. challenge.
1ARTHRITIS NEW ZEALAND MAGAZINE SPRING 2022 Did you notice our updated logo? We have modernised the image and updated our Māori name while maintaining the key brand elements. This new layout also gives us more flexibility when using the logo across different platforms, and it can better adapt to meet ever-changing design needs. #ArthritisChallenge#ArthritisChallenge Sign up to receive this year’s challenge on World Arthritis Day, 12th October 2022 arthritischallenge.nz
An important part of the Arthritis New Zealand service is providing support, advice and education for those with arthritis. Recently we launched Arthritis Assist, which offers a suite of services for those who need help. Featuring in this year’s Annual Appeal is a peer support story from two young men - Kris and Timothy.
This service matches a newly diagnosed or struggling person with arthritis with someone already on their arthritis journey. This sharing of knowledge and practical support impacts those who need help coming to grips with their condition.
You can find details of how you can help out on the back page of this magazine, or you can phone us on 0800 663 463 to donate.
Ngā mihi Philip
2 ARTHRITIS NEW ZEALAND MAGAZINE SPRING 2022 "The Arthritis Assist team were terrific to talk to, they gave me some great ideas on other ways to manage pain, like focusing on breathing, massage and exercises." – Bruce from Auckland W e c a n h e l p y o u m a n a g e y o u r a r t h r i t i s Peer Support Service trained volunteers who provide one on one telephone support Information Packs with handy factsheets, exercises, and information on pain management MyJointPain Online Tool Arthritis IQ Courses Online and Local Support Groups Advocacy Support giving people with Arthritis a voice Arthritis Assist is our new support service providing information, advice, and resources to help people manage Arthritis What we do: C a l l u s o n 0 8 0 0 6 6 3 4 6 3 t o h a v e a c h a t w i t h o u r A r t h r i t i s A s s i s t T e a m o r e m a i l u s o n i n f o @ a r t h r i t i s . o r g . n z
We are now well into spring, and it has been a testing time over the winter months with the continuation of COVID-19, the flu and the pressure on our health system, particularly at the front line. We acknowledge the huge effort of these health staff, particularly the GPs and nurses.
All of these services are only possible through the generous support of our donors. 80% of our funding is generated from grants and the donor appeals we run each year. We thank all those long-term supporters and those who have recently joined our family.
2022 Arthritis New Zealand AGM Wednesday 30th November 3.15 pm ONLINE ONLY To register and receive the meeting link, please phone 0800 663 463 or email info@arthritis.org.nz
A word from Philip
Kia ora,
As always, I am keen to hear from anyone with thoughts and opinions on how we can add to our services or do things better. Please email me at Philip.kearney@ arthritis.org.nz, and I look forward to having that conversation.
The health system has also undergone a radical change with the abolition of the DHBs and the establishment of two Health entities – Health New Zealand and The Māori Health Authority. The focus of this change is to provide better care across the country, particularly to those in more vulnerable communities. As an organisation, we will be engaging with other charities and providers to ensure we see these changes do eventuate.
Timothy* was recently diagnosed with ankylosing spondylitis and contacted Arthritis New Zealand for help. The Peer Support Service paired Timothy with Peer Supporter Kris* who, through telephone support, helped Timothy to validate his feelings and normalise what he was going through.
Peer Support doesn’t always connect people who have the same form of arthritis; but instead, it looks at the whole person and connects a client with a Peer Supporter who is at a similar stage of life and whose experiences and advice would be relevant and helpful to the client.
Kris helps by listening intently and then offering helpful advice and answers that professionals may not have time to provide.
Arthritis New Zealand’s Peer Support Service connects trained volunteers who have arthritis with those who are looking for a bit of extra support. Whether for a newly diagnosed person, or someone who has had arthritis for some time, our volunteers share their experiences, off er ideas, discuss strategies, or even listen with understanding.
Peer Support offers people support, encouragement and hope in the fact that they can live well with their condition.
“Kris was someone I could share my feelings with and come to terms with the heaviness of my diagnosis.”
“Someone who knew that the struggle was real and not in my head. Kris helped me with advice on
It’s a service everybody living with arthritis should use, as it’s a great way to connect people and help lighten the load for everyone in our community who is affected by arthritis.
Kris reached out to Arthritis New Zealand for support, as he found his specialists had little time to explain causes and treatment progression. Kris is now in a good place with his diagnosis, and as a Peer Supporter, he now helps others in their journey.
Timothy expressed relief that someone “finally” understood where he was coming from.
How Kris became a Peer Supporter
Clients of our service appreciate the support, and Arthritis New Zealand is delighted to be able to deliver a service that their health professionals may not offer.
“I was finding it hard to speak to people around me about how I was struggling with my condition,” Timothy explains. “There is a lot of guilt associated with not being productive in society. If you are working to hold down a job or social commitments, you almost have to choose isolation for self-preservation. Still, you become financially screwed, and all the other social pressures become overwhelming.”
by Tory Garnham, Arthritis Assist Team Leader, Arthritis NZ
3ARTHRITIS NEW ZEALAND MAGAZINE SPRING 2022
Peer Support Client, Timothy.
*Timothy's last name has been omitted for privacy reasons.
ways to overcome the feelings of guilt when I am unable to be as productive as I would like to be and to prioritise my health and well-being. For these reasons, he has been a lifesaver.”
How the Peer Support Service helped Timothy
Connecting people through our Peer Support Service
Through our Summer Scholarships, a team of talented medical students have worked on research projects that they anticipate will influence and improve health care for people with arthritis.
4 ARTHRITIS NEW ZEALAND MAGAZINE SPRING 2022
4. Have anatomy and pathology-based sections.
5. Reinforce cultural competency via ‘don’t forget’ prompts.
by Dr Richard Griffiths, Research Manager, Arthritis NZ
Professor Rebecca Grainger.
Research Project 1:
What we do for arthritis research in New Zealand
• Mobile apps can potentially enhance medical education in a very positive way. There is a gap in the market for an app that will notably help medical students become more competent at MSK physical examinations. Of the nearly 5,000 existing mobile apps found, only four apps met the designated inclusion criteria and could be assessed using the validated measure.
2. Be useful for ‘just-in-time-learning’ (as in, available when users most need it).
Insights from our Summer Scholarships research
• Adding to a growing body of evidence, results found that genetic variants common to Māori or Pasifika populations are associated with gout risk to the high prevalence of gout in these communities. However, some of the associated genetic variants also have different effects across
We are excited to share some findings from the research projects led by three students: Daniel Gray, Ollie McCullough, and Vy Nguyen.
• The focus group of medical students returned five main features required from an app. They were that it would:
1. Be a good interactive tool.
Inform the creation of a mobile app for medical students learning musculoskeletal (MSK) examination – Ollie McCullough. Supervised by Dr Tehmina Gladman and Professor Rebecca Grainger, Ollie’s project summarised the availability and quality of MSK examination mobile apps and then determined the features needed to create one that would best support the learning and maintenance of MSK examination skills and knowledge.
Recent surveys showed our readers want to know more about the impact our research funding is having. Therefore, an overview of current research will be a feature in each issue of Joint Support.
Association between gout diagnosis and genes in Māori and Pasifika people – Daniel Gray. Supervised by Dr Tanya Major and Professor Tony Merriman, Daniel’s project investigated whether Polynesianspecific genetic variants are associated with gout diagnosis.
Research Project 2:
Key Findings:
We also promote other arthritis-related research projects conducted by researchers throughout New Zealand and occasionally in other countries if relevant to New Zealand consumers/patients. Many of these projects have been funded by other agencies or universities that, like us, wish to see significant breakthroughs and findings that will potentially help people with different types of arthritis.
A note from Daniel “The ability to work on a summer project has given me tremendous insight into the research process. The opportunity to work with a Polynesian dataset in a disease, which is close to my own heart through family connections, has also been very fulfilling.”
Pacific nations, so generalising results across populations may not always be appropriate.
Key Findings:
• Studies such as this one are important to understand disease risk better and could potentially improve our ability to introduce early interventions to prevent the disease. This development would be highly positive for Māori and Pacific peoples, who have two and three times the prevalence of diagnosed gout, respectively (Synergia Ltd., 2020).
Since the 1970s, Arthritis New Zealand has been funding research projects to help improve the lives of those affected by arthritis. Since then, we have funded over 200 studies that up-and-coming postgraduate students and well-established researchers at various tertiary institutions and health-based organisations undertook. Some researchers are international experts in their respective fields who have published extensively in high-impact peer-reviewed health and medical journals.
3. Have a clear and concise layout.
1. Foot pain (77%)
2. Skin/nail lesions (62%)
Research Project 3:
Your voice can be heard by joining a study and assisting our dedicated arthritis research community. Together, we can produce significant insights and breakthroughs to help improve the lives of those affected by arthritis in Aotearoa New Zealand.
ZOOM CAFĒ M o n t h l y t o p i c s f o r p e o p l e w i t h a r t h r i t i s w w w . a r t h r i t i s . o r g . n z / o n l i n e e v e n t s Last Thursday every month (except for December) 7 pm to 8pm
5ARTHRITIS NEW ZEALAND MAGAZINE SPRING 2022
ARTHRITIS IS ONE OF THE LEADING CAUSES OF DISABILITY IN NEW ZEALAND
Would you like to participate in arthritis research?
Podiatry needs and service provision: a retrospective review of a rheumatology podiatry clinic – Vy Nguyen. Supervised by Dr Sarah Stewart, Dr Angela BrentonRule, and Professor Nicola Dalbeth, Vy’s project aimed to understand the foot-health needs and podiatry services offered to patients who have attended the AUT Podiatric Rheumatology Clinic – particularly in recognition of the scarcity of dedicated podiatry services for people who have arthritis. Vy’s Summer Scholarship work was published in the Journal of Foot and Ankle Research in May 2022.
3. Footwear/orthotic concerns (57%)
“To me, the most invaluable experience from this opportunity was gaining a better understanding of and empathy for the challenges faced by patients with longterm rheumatic conditions. I believe we can do better for our patients, and undertaking research is the first step to helping patients with arthritis and other longterm conditions.”
• This was the first study focusing on the needs and service provision for patients attending a specialist podiatric rheumatology clinic in Aotearoa New Zealand. The most common presenting concerns amongst patients at this clinic were:
visits, and clinical trials for consumers/patients with various types of arthritis.
Key Findings:
A note from Ollie “This funding has allowed me to learn new research techniques, expand my knowledge in a medical field of interest, and provide a framework to hopefully improve medical student musculoskeletal education and therefore improve patient outcomes in the future.”
Currently, we are promoting over 20 studies on our website. There are opportunities to participate in online surveys, interviews, long-term studies, in-person study
You can find out more about these studies on our website’s ‘Take Part in Research’ page and on our social media platforms. We encourage you to regularly visit our website, www.arthritis.org.nz, and our social media channels to see if there are any new studies for you to participate in.
In July the Governing Body held a farewell for Peter Larmer who stepped down as Chair of the Board after 6 years in that position. Peter’s leadership in guiding the organisation through some challenging times was particularly noted as was his passion for ensuring the voice of Arthritis New Zealand was heard clearly in the health sector. One special feature of his farewell was the gathering of the four most recent Board Chairs to thank Peter and welcome him to the ranks of former Chairs who understand the pressures of leading the organisation.
Four leaders of Arthritis NZ, left to right: Alan Henwood (2011 to 2015), Rebecca Roberts (current), Kathie Smith (2007 to 2011) and Peter Larmer (2015 to 2021).
A note from Vy
• The study results have been used to inform the development of a standardised clinical assessment form to assist podiatry students who engage with patients and develop appropriate management plans. Other findings also reflected the need for improved access to specialist podiatric rheumatology services to reduce inequities.
• Take a support person with you when possible.
Janet has found CBD to be very beneficial and is pleased that her GP provided a prescription. The pain relief CBD has given her has been significant, and Janet has continued to use it in consultation with her GP. She has also slightly reduced some of her other medications and is more able to be active and
We wish Rob a happy and fulfilling retirement and thank him for his service and commitment to Arthritis New Zealand.
"The best help was the peer support phone call, talking to another person who understands and who has helpful ideas."
Janet’s new medication came in a bottle with a dropper, and her pharmacist advised her to start on the lowest dose twice daily in conjunction with her other prescribed medication.
After a discussion at her local arthritis support group, Janet wondered if CBD was a treatment she could try. She discussed it with her GP, who thought it was worthwhile, considering Janet’s conditions and the difficulties she was experiencing with other medications. As CBD is not a Pharmac-subsidised treatment, Janet was also happy to pay the extra cost of $80 per month.
TIPS FOR WORKING WITH YOUR HEALTHCARE PROFESSIONAL
by Francesca Holloway, Manager of Awareness and Advocacy, Arthritis NZ
Farewell to Rob Mitchell
Taking a chance
• Plan your visit – list the questions you have and make sure you ask them!
• Make yourself familiar with the Code of Health and Disability Consumers’ Rights – available on www.hdc.org.nz. They also have an advocacy service, so if you have concerns or queries give this service a call – 0800 555 050.
How cannabismedicinalhelps Janet
AndRob.
Janet has three forms of arthritis, and her pain management has been a major issue. She describes the pain as extreme and has tried several medications from her GP and specialist over the years. Over time these medications would not remain effective and some caused complications.
*Janet’s last name has been omitted for privacy reasons.
– Mereana from Manawatu
• Take notes and read them back to your healthcare professional in person to ensure you understand their advice.
Rob Mitchell retires this year after 18 years as our Manager of Corporate Services- a time of significant change in the health and social service sectors that greatly impacted Arthritis NZ.
6 ARTHRITIS NEW ZEALAND MAGAZINE SPRING 2022
After bearing enormous pain from her arthritis, Janet* has found significant relief after being prescribed medicinal cannabis (CBD).
The results
Itproductive.isessential
In recalling his time with the organisation, Rob has seen us cope with significant deficits, undertake several organisational restructures and changing models of service, weather events such as the global financial crisis, and most recently adjusting to operating during a pandemic. One highlight he recalls is attending the camp for children with arthritis and learning first-hand how much children benefit from it. Reflecting on his time with Arthritis NZ, Rob reflects on how well we as an organisation transitioned to working from home and online when COVID-19 changed the world. “Our ability to adapt quickly showed how we have developed robust systems and adapted to new technology, so we were able to manage organisational and societal changes well”, comments
looking ahead – Rob is planning walking tours, travel (domestic and international), golf, fishing and all the activities often put on hold while pursuing a busy professional career.
Janet advises others to be prepared to talk clearly and openly about their pain and its impact on their lives and not suffer in silence. She knows there is no magic wand for extreme pain, but it’s about finding out what works for you.
to realise that this result will not be the case for everyone. Research on the benefits and drawbacks of using CBD is ongoing, and for some people, it does not provide the benefits Janet has experienced. Having a GP who understood Janet’s existing issues with pain relief medication and then discussed CBD medication professionally made all the difference.
7ARTHRITIS NEW ZEALAND MAGAZINE SPRING 2022
has raised over $45,000 in three years. All funds go towards the camp, which invites children with juvenile idiopathic arthritis (JIA) and their parents to a weekend filled with activities and support.
Keep your life moving
Sharp Corporation raises over $45,000
"Arthritis Assist is a wonderful service and very clear messaging, Tory sent me a fantastic pack of information, I love the fact sheet, nice wrap-around service." from Canterbury
“Sharp’s support for Children’s Camp is massively helpful,” Arthritis New Zealand CE Philip Kearney explains. “Each year (besides 2021 and 2022 due to COVID-19), we bring around 30 kids and their parent or guardian to Tōtara Springs in Matamata. It’s a weekend where the parent/guardian and child don’t need to pay for anything.”
Sharp supports our Children’s Camp by holding an tournamentfundraisingannualgolfthat
This is the Arthritis NZ Team with Maurice Roberts (former staff member), Philip Kearney (CE), and National MP Michael Woodhouse.
– Sue
around one day, and the next day, it’s almost like everything’s stopped,” Philip said. “So what the camp does is bring kids together to give them a chance to play, learn, and have an amazing time. The other thing is that the parents can connect with each other. We also try to bring some parents back a second time because often they can support the new parents.”
Arthritis is often associated with older people, but kids and teens can get arthritis too. Philip says the difficult thing about JIA is that it’s not a disability you can diagnose immediately. Kids who are affected often need to take several tests, and it could take three to six months for the child to be diagnosed with
imagine parents suddenly discovering that their child can’t move one day. They will be running
Arthritis affects more than 700,000 people in New Zealand, so we are grateful to Sharp for their commitment to positively contributing to local communities – from schools to charities and not-forprofit organisations.
“Youarthritis.can
Always read the label. Use only as directed. If symptoms persist see your health professional. Vitamin and minerals are supplementary to and not a replacement for a balanced diet. Blackmores, Auckland. jointSupportsmobility jointSupportsstiness jointSupportscomfort Proud sponsors of Arthritis New Zealand
Arthritis New Zealand 0800 663 463 | arthritis.org.nz | info@arthritis.org.nz I would prefer to receive receipts via email Email address:Iwant to make a donation to help Arthritis New Zealand continue to provide its valuable services $25 $50 $100 Other_________ Card no: Expiry: Name on card: Signature: Internet Banking: Arthritis New Zealand Bank Account: 03-0502-0468578-00 Particulars: 22SEP_JS Reference: Your Donor ID Donate online: arthritis.org.nz/donate Yes! I will make my gift by: Call us on 0800 663 463 and we are more than happy to do a credit card donation with you over the phone. My details: Donor ID: (If known) Address:Name: Please debit my card Visa Mastercard #ArthritisChallenge#ArthritisChallenge Sign up to receieve this year’s challenge on World Arthritis Day, 12th October 2022 arthritischallenge.nz Take on a simple everyday task that’s a challenge when you have arthritis.
