Joint Support Magazine May 2022

Improving the life of every person affected by arthritis

JOINT SUPPORT MAY 2022

Improving the experiences of health services for people with arthritis See page 3

ARTHRITIS NEW ZEALAND MAGAZINE MAY 2022

ARTHRITIS NEW ZEALAND MAGAZINE MAY 2022

01

Meet our new ChairRebecca

delivery platforms. Another exciting development is the reinvigorated research programme Arthritis New Zealand is undertaking, looking beyond clinical work to social and community-based studies. I welcome the tangible results of this work.

Tēnā tātou katoa, Ko Aotearoa taku whenua, ko Tamaki te tūrangawaewae. Ko Aerihi, Ko Kōtimana, Ko Ingārehi te toto a iwi. Ko Rebecca Roberts au.

Ko au te kaihautū ki te Mateponapona ō Aotearoa.

I am proud to take on the role of Chair. I am aware I am filling the large shoes left by Peter Larmer.

My four years as a Board member has given me a strong understanding of the varied ways Arthritis New Zealand strives to improve the lives of all New Zealanders dealing with the challenges of arthritis. I look forward to working with the wider Board to continue supporting this good work. A key focus in 2022 will be on the efforts to ensure the organisation is best placed to meet Aotearoa’s health sector reforms.

Dealing with COVID-19 has highlighted clear inequalities in access to healthcare and information across the motu. Working to counter this proactively will be an ongoing challenge and focus for Arthritis New Zealand, but one I think it is well prepared to meet. Its accelerated development of online health information through MyJointPain and other online platforms is an excellent example of this response. I look forward to seeing continual growth in these and other

My professional background includes 25 years in law and global financial services. In recent years my focus has shifted to working in the not-forprofit sector. I am the Grants Coordinator for Simplicity Charitable Trust, working with charities across Environment and Social Services to deliver impact-focused funding. This experience has broadened my understanding of the challenges charities face when competing for funding and demonstrating the measurable impact of their services. Arthritis New Zealand’s broad range of regional activities, DHB programme delivery and collaboration with other NFP organisations, and strong advocacy focus give it many opportunities to demonstrate its efficacy in this regard.

Based in Auckland, I’m a mother of three teenagers who keep me entertained and busy. I keep my body and mind healthy and enjoy a range of activities. My partner and I have embraced the challenge of learning Te Reo, with an increased understanding of Te Ao Māori and its important place in Aotearoa. Continuing to ensure diverse and equity-focused representation on our Board is another challenge and focus for me in 2022.

Kia kaha Rebecca Roberts Chair

Connect with other people living with your condition!

Join one of our private Facebook groups: • Gout Arthritis NZ • Arthritis NZ • Psoriatic Arthritis NZ • Osteoarthritis NZ • Fibromyalgia NZ • Lupus NZ • Rheumatoid Arthritis NZ • Arthritis Healthy Eating & Exercise NZ • Families of Children with Arthritis NZ

02

ARTHRITIS NEW ZEALAND MAGAZINE MAY 2022

For more information about arthritis and living well, visit our website www.arthritis.org.nz

Improving the experiences of health services for people with arthritis A team of talented medical students are working on research projects that they anticipate will influence and improve health care for people with arthritis.

The team is supervised by Professor Rebecca Grainger and Doctor Tehmina Gladman (PhD).

The projects focus on two areas relevant to people with arthritis: • A mobile app to facilitate student learning in musculoskeletal and arthritis education while completing their medical degrees.

• Gather ideas and perspectives for what public hospital rheumatology services should do and how these should be organised.

Dr Gladman hopes to gain funding to develop the app and evaluate its impact on student learning.

Rheumatology services Focusing more directly on patient care, Rachel Ngan Kee has been supervised by Prof. Grainger to explore what people with arthritis and related conditions value about their current DHB rheumatology services and identify priorities for future services. Professor Nicola Dalbeth and Doctor Valerie Milne (PhD) are also on the research team for this project

There are no national guidelines about what public hospital rheumatology services should Mobile app do or how these should be Medical degrees have full curricula organised. Prof. Grainger led with learning required across work to gain consensus from Professor Rebecca Grainger and Rachel the life continuum in all disease rheumatologists in Aotearoa New Ngan Kee with Kee's poster, which was systems and healthcare settings. As awarded a Highly Commended prize in the Zealand about rheumatology of Otago Wellington Summer such, Musculoskeletal and arthritis University service provision components Student showcase on 27th January 2022. education may not get enough based on international bestin-depth learning necessary for practice guidelines. However, all students to gain all the skills and confidence to the patient perspective is critical if rheumatology assess and manage people with arthritis. services are to meet patient needs. Ngan Kee led a focus group of volunteers recruited by Arthritis New Dr Gladman and Prof. Grainger’s students, Ollie Zealand to canvas and explore their views about McCullough (Ngāti Kahungunu ki Wairarapa) rheumatology services and the best practice services and Henry Li have spent a summer building the reviewed by rheumatologists. foundations of a future mobile app.

This work is being prepared for publication and McCullough completed a systematic search of the will inform a future survey open to users of DHB mobile app stores to locate and rate mobile apps rheumatology services, undertaken in collaboration that support learning musculoskeletal clinical skills. with Arthritis New Zealand.

He also developed guiding principles for creating a student-centred musculoskeletal examination Together these types of innovative projects should skills app based on the literature and student focus inform and improve future healthcare. Prof. Grainger group’s data analysis. and Dr Gladman have turned their research interest in using apps to support medical student education Li developed a wireframe model of a potential to improve student opportunities to develop skills musculoskeletal clinical skills mobile app in parallel in the assessment of arthritis. They are delighted with this work. He tested and refined the model to support future doctors in gaining research using feedback from student interviews. The experience in arthritis. students’ work informed each other’s projects, Rachel Ngan Kee and Ollie McCullough's improving both as they developed their research. work has been supported by research funding The medical students involved were excited and enthusiastic about improving their skills in this area. provided by Arthritis New Zealand. *Professor Rebecca Grainger is a rheumatologist working in the public hospital system in the Wellington region. *Doctor Tehmina Gladman is a senior lecturer and education advisor at the University of Otago Wellington.

ARTHRITIS NEW ZEALAND MAGAZINE MAY 2022

03

Mindfulness and arthritis What is mindfulness?

For some people, mindfulness is a very spiritual process; for others, it is not. In its less spiritual understanding, “Mindfulness means paying attention to what is presently occurring, with kindness and curiosity” – Mental Health Foundation of NZ. Have you ever walked around mindlessly, ending up somewhere but not entirely sure how you got there? Think of mindfulness as the opposite.

Modern society has taught us that efficiency is vital, so we have become less practised in being aware of and appreciating our surroundings. It is not about changing our surroundings but accepting them for what they are.

Benefits of Mindfulness Mindfulness has strong evidence for improving mental health, but we are learning more about how it helps our physical health because of the mindbody connection. Benefits of regular mindfulness practice can include reduced depression and anxiety, reduced fatigue, reduced psychological symptoms of chronic conditions, improved sleep, and better pain control.

Some studies have looked specifically at how mindfulness could be helpful for people with inflammatory arthritis. A systematic review and meta-analysis were published on this topic in 2020.

This type of study reviews alreadypublished research in this area to see if there is a consensus. The authors concluded that: As a complementary

therapy in clinical practice, mindfulness interventions can improve pain intensity, depression, and symptoms in patients with rheumatoid arthritis.

None of the studies reported adverse events, so there appears to be little risk in trying mindfulness.

The study recommended the use of mindfulness both in clinics and making use of online resources.

There were only six studies included in the review, so there is still a need for more research in this area. With no adverse effects found in any of the studies included in this meta-analysis, it is a safe complementary therapy for you to try.

Try These Steps: Settle In: Find a quiet space. Using a cushion or chair, sit up straight and allow your head and shoulders to rest comfortably. Place your hands on the tops of your legs with your upper arms at your sides.

Breathe: Close your eyes and take a deep breath through the nose and relax. Feel the fall and rise of your chest. With each breath, notice the coolness as it enters and the warmth as it leaves. Don’t control the breath, but follow its natural flow.

Stay focused: Thoughts will pull your attention away from the breath. Notice them, and gently return your focus to the breath. You may count your breaths to help you stay focused.

Take 10 minutes a day: Start with 10 minutes a day and move to 20 minutes for maximum benefit.

If you feel any distress while practising mindfulness meditation, stop and consult with your doctor, counsellor, or psychologist. You can always ring or text 1737 if you need to speak with someone urgently.

You can use online platforms that mindfulness practitioners have created and made available for free for more guidance. Some are free or have a limited free version. To see what’s available and for guidelines on how to choose a mindfulness service, or to read more about getting help to learn mindfulness, go to www.arthritis.org.nz/ mindfulness-meditation-arthritis Remember that mindfulness is a complementary therapy and should not replace your usual medical treatments. If in doubt, always ask your doctor.

04

ARTHRITIS NEW ZEALAND MAGAZINE MAY 2022

Significant Lupus/SLE research study gets green light The inaugural Arthritis New Zealand Lupus/ SLE Postdoctoral Fellowship has been awarded to Dr Chunhuan Lao.

to the needs of patients suffering from Lupus and improve the management and outcomes of Lupus in New Zealand,” says Dr Lao. Very little is known about the epidemiology of Lupus/SLE in New Zealand. There is no information on the ethnic difference in SLE prevalence, the major type of Lupus. Māori and Pacific patients with SLE have a higher risk of developing Lupus nephritis, but the factors contributing to this difference have not yet been identified.

The Lupus/SLE Postdoctoral Fellowship is a significant new research funding opportunity that has been made available through an extremely generous bequest by the late Dorothy Ashbolt.

Dr Chunhuan Lao will examine the prevalence, treatment, outcomes and costs of Lupus/Systemic Lupus Erythematosus (SLE) and compare the results by ethnicity, age group and socioeconomic status.

This project aims to fill the information gap by providing data on the burden of Lupus/SLE on the healthcare system, the characteristics of the Lupus/ SLE population, equity in access to treatment, and comparison of Lupus/SLE outcomes by ethnicity and with overseas outcomes.

Dr Lao will analyse and data-link the National Minimum dataset, the Pharmaceutical Collection, National Non-Admitted Patient Collection, Mortality Collection and Death Certificates to examine the prevalence, treatment, outcomes and costs of Lupus/SLE and compare the results by ethnicity, age group and socioeconomic status.

“It is a great honour to be granted the Lupus/SLE Postdoctoral Fellowship. I am very excited to start this research project to fill the information gap on Lupus in New Zealand. I also deeply hope that this project will draw public and government attention

The Fellowship The purpose of the Fellowship is to provide significant financial support to emerging researchers in New Zealand to undertake research that has the potential to advance knowledge and address important gaps in the Lupus/SLE research field while also supporting people with Lupus/SLE within New Zealand.

Peter Fields, Trustee of Dorothy Ashbolt’s Estate, says, “this is the start of an exciting new journey to which I wish Dr Lao and Arthritis New Zealand every success on behalf of Dorothy”.

Dr Lao is a Senior Research Fellow at the University of Waikato, and a scientist specialising in health economics and biostatistics. “I have expertise in working with large datasets, including the National Minimum dataset, the National Non-Admitted Patient Collection, the Pharmaceutical Collection (PHARMS), and the National Mortality Collection.

I am privileged to work with committed clinician researchers working in rheumatology and renal disease. My long-term objectives are to become a national expert in the effectiveness and health economics of chronic diseases and their treatments.

Over the next five years, my goal is to lead a Health Research Council (HRC) project to study the variations in outcomes and the impact of arthritis on people’s lives using large highquality datasets,” she says.

“This is the start of an exciting new journey to which I wish Dr Lao and Arthritis New Zealand every success.”

– Peter Fields, Trustee of Dorothy Ashbolt’s Estate.

Dr Chunhuan Lao ARTHRITIS NEW ZEALAND MAGAZINE MAY 2022

05

What is equity?

Equity is not just a new word for equality.

Equity ensures that all have equal opportunities in ways that work for them.

Advocating for equity recognises that not everyone starts from the same position.

self-determination, and transport. Accurate equity will reflect progress in health and these other indicators. This approach means partnering with other providers, recognising that such partnerships will require strong trust in different forms of messaging and service delivery by all partners.

Why is equity important?

One of the most noticeable issues in the management of arthritis is the inequities around gout arthritis.

Gout arthritis is a significant health issue for Māori and Pacific communities. It can be managed and people can continue to be active members of their community. Many people think that lifestyle factors cause gout arthritis, but it is a genetically linked condition.

Māori and Pacific are more likely to develop gout arthritis because of their genetic makeup rather than lifestyle factors.

These genetic factors are often not recognised and are poorly understood, meaning that Māori and Pacific are not receiving equitable treatment in the health system.

To meet our Mission, which is 'improving the life of every person affected by arthritis', we must be advocates for equity, so all can manage conditions such as gout arthritis.

Advocating for equity also means improving access to support in managing osteoarthritis and inflammatory arthritis for people who find it difficult to access current health services, and often that group will be Māori and Pacific.

Gout arthritis in Māori and Pacific communities is an issue that requires us to look at different ways of delivering messages and service delivery, such as Whānau Ora, that embrace a holistic perspective of Māori and Pacific communities.

This approach requires an appreciation that health care is intrinsically linked to broader social determinants, including housing, employment,

06

ARTHRITIS NEW ZEALAND MAGAZINE MAY 2022

A commitment to equity also requires a commitment to Te Tiriti o Waitangi as the foundation of a bicultural country. While Arthritis New Zealand has this commitment in our strategic priorities, our challenge is to make this commitment meaningful in all aspects of our organisation – from governance to setting priorities to developing services and our role as advocates.

This challenge is one we best meet by learning and working together, knowing that our organisation will evolve and grow as we do so.

To be serious about helping everyone, we recognise that some groups experience more barriers in accessing help and support than others.

Why is gout arthritis a core condition for our focus on equity?

•

Over 200,000 people had gout arthritis in 2019, which is increasing. It is the second most prevalent form of arthritis in this country.

•

Māori and Pacific have rates above the national prevalence because of their genetic predisposition to be affected by gout arthritis.

•

Young Māori men, in particular, have greater difficulties in accessing care for gout arthritis.

•

One in 5 people with gout arthritis lives in the areas that experience greater disadvantage or challenges in New Zealand.

The workplace and arthritis A supportive work environment that allows flexible working hours, and adjusted job demands, provides accessibility and includes the presence of supportive co-workers and employers can help to reduce withdrawal from the labour force by people with arthritis. Here are some answers to common questions about working with arthritis: Should I tell my employer that I have arthritis?

Yes, only if it could cause health and safety problems in the workplace, and/or if it could prevent you from suitably performing the responsibilities and duties of the job.

Is it reasonable for my employer to accommodate my disability?

There are exceptions in the Human Rights Act to an employer’s duty to accommodate an employee with a disability. Your employer may treat you differently on account of your disability if you can only perform the duties of your position satisfactorily with the aid of special services or facilities and it would not be reasonable to expect your employer to provide

those services or facilities. Some other exceptions apply. Every case is different and your situation will be considered on its own facts and merits.

Can I leave the workplace for doctor’s appointments?

You may use sick leave to attend medical appointments in relation to chronic arthritis.

All employees in New Zealand are entitled to 10 days sick leave per year after they’ve worked for six months for one employer.

Remember to check the terms of your employment agreement, because it may provide more than this. Once you have used up all your sick leave and annual leave, your employer is not obliged to provide further leave for medical appointments. However, they are obliged to be reasonable and act fairly towards you. The more information you provide your employer about your medical situation, the more likely they are to be understanding and allow you flexibility to leave the workplace. If you have ongoing and recurrent medical appointments, you might consider approaching your employer about flexible working arrangements.

More information available at: www.arthritis.org. nz/advocacy/employment/

ARTHRITIS NEW ZEALAND MAGAZINE MAY 2022

07

Calling all knitters...

We need you!

Keep your life

moving

Do you like knitting or crocheting? Have you got oodles of spare yarn? Want to donate your knitting to a good cause?

We need you to take part in our fundraising project - Project Knit Well - to promote awareness over the winter months to keep your joints warm and your hands and fingers nimble!

Knit up a storm - we need hats, scarves, gloves, socks, and leg warmers.

Your knitting will be sold through our website for a donation. Craft for a purpose and help support and fundraise for Arthritis New Zealand!

Benefits of knitting Research has found that knitting can distract from chronic pain including pain from arthritis.

It also helps reduce depression, encourages relaxation, reduces loneliness and isolation and helps older people feel useful to society.

The findings come from the UK organisation Knit for Peace, which did a review of previous studies into the physical and mental health benefits of knitting and carried out a survey of 1,000 people in 2016.

For more information and to register for the project, call 0800 663 463 or email info@ arthritis.org.nz

08

ARTHRITIS NEW ZEALAND MAGAZINE MAY 2022

Supports joint mobility

Supports joint stiffness

Supports joint comfort

Proud sponsors of Arthritis New Zealand

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.

ARTHRITIS NEW ZEALAND MAGAZINE MAY 2022

09

Facebook FAQs Q:

How do we get a prescription for medicinal Cannabis

A:

Any registered doctor in New Zealand can prescribe CBD oil. Doctors are encouraged to only prescribe for a medical condition when conventional treatments haven’t been successful. The Cannabis Clinic has the following tips for those wanting a prescription from their GP: Email your GP first. It will give them the chance to prepare and gather their thoughts.

If they are flat out against it, you will find out before wasting your time and money with an in person appointment. You can always try another GP if your usual one isn’t open to the discussion.

Q:

I heard that pineapple can help relieve arthritis pain, is this true?

A:

Pineapple has indeed been studied as a treatment for arthritis. Pineapple also appears on ayurvedic sites and guides to eating in a healthy ayurvedic way. Pineapple contains a group of enzymes called bromelain which has promising anti-inflammatory and pain relief effects. Bromelain appears in high amounts in the fruit core and stem, from which it is extracted for therapeutic doses.

Bromelain appears to work on both anti-inflammatory signalling molecules and pro-inflammatory signalling molecules to produce an overall anti-inflammatory effect. It also acts to decrease plasma bradykinin which helps to reduce blood vessel permeability and fluid, which reduces pain and swelling. It may be used as a safe and natural alternative to NSAIDs. Studies suggest bromelain has another anti-inflammatory effect by interrupting the arachidonic acid metabolism pathway.

Arachidonic acid is a fatty acid present in high amounts in animal foods (meat, dairy) and is a precursor for molecules that play a role in inflammation, pain, and blood clotting.

Interfering in the metabolism of this fatty acid leads to a reduction in those physiological effects of inflammatory conditions like arthritis.

10

ARTHRITIS NEW ZEALAND MAGAZINE MAY 2022

If appropriate, book a double appointment. They will likely not have all the information they need to make a prescription off the bat. They will also have a lot of information they need from you and to give you to ensure you get the correct prescription. A double appointment will allow time for this in a more relaxed environment.

Bring written information to support your request.

You may be the first person to ask for a medical cannabis prescription, so your doctor may not have all the information they need to do this. The Cannabis Clinic has a Doctor Prescribing Guide on their website that you could bring a hard copy of to your appointment or email the digital copy to your doctor.

Understand that CBD oil is an unapproved medicine. This means that the current body of research does not prove that CBD oil is a treatment for any health condition. You will need to sign a consent form stating you are aware of this if you are to be prescribed CBD for your condition.

A 2004 review of clinical studies on bromelain as a treatment for osteoarthritis concluded that studies on the mechanism of action of bromelain were of poor quality and more research needs to be done on how this really works.

Is it safe long-term?

More studies need to be done. Further studies on long-term supplementation, kidney effects, and contraindications with anticoagulants and antibiotics need to be completed. In human studies, there appeared to be good tolerability and safety in the lower dosages (540mg/day) and at that dose, as effective as standard treatment.

Dosages studied range from 200-2000mg/day.

Food or supplement?

It is not accurately known how much bromelain is in pineapple flesh as different varieties of the fruit contain different amounts.

Bromelain extract from the core and stem differs from that of the fruit, but due to its commercial preparation and use, these extracts are used in studies rather than the fruit. We do know that it is best consumed in fresh and raw form to get the highest amounts of bromelain as higher temperatures as used in cooking, inactivates the enzyme.

If you want to know if bromelain as a supplement is right for you, consult both your GP or rheumatologist and nutritionist or naturopath before commencing.

Garden Amble

Whanganui Arthritis Support Group held their annual Amble in the Garden Fundraiser on 24 January.

Together with the support of Arthritis New Zealand the fundraiser was well organised and prepared for the sudden change in group activities when the country moved to the “red” setting. The Amble was an outside event so the fundraiser went ahead under the Government’s Covid-19 guidelines at the time.

The Garden Amble is a regular and an old favourite in the Whanganui calendar. The event allows people to enjoy the local gardens, meet people and support Arthritis New Zealand.

Eleven Whanganui gardens were open, 402 tickets were sold, $8,500 was raised and the money will be used to support people with arthritis in Whanganui.

David Orr, chair of the Whanganui Arthritis Group described the day as “a great day out for the Whanganui community to enjoy, with so many events being cancelled we were so lucky that we had an activity that

could go ahead under the red light traffic system.

We had a great variety of gardens that were all different from each other.

Our aim was to create awareness about arthritis and to keep the name of Arthritis New Zealand relevant within our community.”

This event would not have gone ahead without the fantastic and generous time and effort of all the volunteers and garden owners involved. The Whanganui Arthritis Support Group have been meeting for 18 years - they have 2 active groups, a monthly coffee group and an evening group.

ARTHRITIS NEW ZEALAND MAGAZINE MAY 2022

11

Thank you for your support.

Arthritis is a long-term condition that has no cure.

But, with the right information and support, it can be managed.

Arthritis New Zealand is the only charity in New Zealand committed to helping people of all ages, with any form of arthritis.

Your donations help to fund our crucial support services such as Arthritis Assist and provide education and information through online programs such and MyJointPain for people with osteoarthritis, and Arthritis IQ for healthcare workers.

If you have already made a donation in 2022 - Thank you.

Donate Today My details: Donor ID: (if known, or you can find yours on the attached letter) Name: Address:

Yes! I want to make a donation to help Arthritis New Zealand continue to provide its valuable services. $25

$50

$100

Other_________

I will make my gift by: Please debit my card Card no:

Visa

/

Mastercard

/

Name on card:

/

Expiry:

/

Signature:

Internet Banking Arthritis New Zealand Bank Account: 03-0502-0468578-00 Particulars: 22MAY_JS1 Reference: Your Donor ID Donate online: arthritis.org.nz/donate-now-2 I would prefer to receive receipts via email Email address:

If you would like to make a credit card donation by phone please call us on 0800 663 463. If we do not answer your call straight away, leave a message and we will get back to you.

Arthritis New Zealand 0800 663 463 |

12

ARTHRITIS NEW ZEALAND MAGAZINE MAY 2022

arthritis.org.nz

|

info@arthritis.org.nz