Issuu

Improving the life of every person affected by Arthritis

JOINT SUPPORT

SPRING 2023

Behind the scenes:

A day in the life of Arthritis Assist Team Leader, Tory See page 8

Lupus SLE Fellowship update See page 7

Tips for spending less money on food See page 10

Q&A with a General Practitioner See page 12

A word from Rebecca Kia ora,

Thank you! To all our supporters and donors for your amazing donations to Arthritis NZ - Mateponapona Aotearoa. Your generosity makes a significant difference to our efforts to ensure all New Zealanders with arthritis live well. Your support is vital to our sustainability and growth. The impact that it makes can be seen in the articles in this issue of Joint Support. Donations enable us to provide support to people newly diagnosed with arthritis, like Linda, who’s story is shared on page 3. When Linda was at her lowest point, she was able to find the support and information she needed through Arthritis Assist. She read up on Lupus, Rheumatoid Arthritis and Osteoarthritis and requested a tailor-made information pack. She was able to attend webinars and used our 0800 advice line. These services empowered her to manage her chronic conditions. This issue also features an update on the work of Dr Chunhuan Lao, our Arthritis NZ Lupus/SLE Postdoctoral Fellow. The purpose of the Fellowship

is to provide significant financial support to emerging researchers in New Zealand to undertake research to advance knowledge and address important gaps in the Lupus/SLE research field. Her first research paper has now been published and was presented in August 2023 at the New Zealand Rheumatology Association Annual Scientific Meeting in Queenstown. Her contribution was very well received, leading to her being awarded the “Best Presentation on Lupus” at the Awards Dinner. Her findings are summarised on page 7 and if you would like to read the full paper this is available by scanning the QR code on page 7. We would not have been able to establish this Fellowship without the transformative generosity of the late Dorothy Ashbolt, who left a bequest to Arthritis NZ in her Will. For a charity, bequests enable us to explore new horizons and expand our impact. A new innovative programme becomes possible, we can expand our reach in the community, and invest in new research. The financial flexibility bequests provide empower us to dream bigger and do more. If you would like more information about leaving a bequest, please contact Fiona Smith on 0800 663 463 or email her at: funding@arthritis.org.nz Thank you for being a valued member of our family. Ngā mihi Rebecca Roberts, Chairperson of the Board

https://tinyurl.com/ycyud4pj

Notice of Annual General Meeting – 2023 Arthritis NZ – Mateponapona Aotearoa stakeholders are formally notified of the details for the FY2023 Annual General Meeting. Wednesday, 29 November 2023 3.15 pm to 3.45 pm Online via Zoom If you would like to attend, please scan the QR code and register your interest by Friday 24 November, and we will send you a Zoom link to join the meeting.

ARTHRITIS NZ - MATEPONAPONA AOTEAROA MAGAZINE SPRING 2023

Scan the QR code to register your interest

Focus on what can be done, not what can not be done

activities. Understanding the impact of brain fog and fatigue, Linda learned to adapt and prioritise selfcare.

by Anita Lee

Linda’s frame of mind played a pivotal role in her progress. With support from her family and community she cultivated a positive mindset, using humour as a coping mechanism. “Today is a feel sorry for Linda day, but only until 11am”. Today Linda stands as an active participant in life. She has returned to her passion for running and has become an integral member of the Invercargill Harriers Group, where she meets weekly and finds invaluable support.

Linda Te Au

Meet Linda Te Au, a remarkable resident of Invercargill whose inspiring journey serves as a beacon of hope for those living with arthritis. Ten years ago, in her mid-50s, Linda’s active lifestyle was abruptly interrupted when she began experiencing a persistent crick and debilitating pain in her neck. She found herself feeling fatigued and uncomfortable, unable to carry on with her usual routine. Linda had to take time off work and attended numerous medical appointments in an attempt to understand the cause of her pain and discomfort. Despite all her efforts, the source of her symptoms remained a mystery, leaving her feeling puzzled and unsure about what was happening to her body. With determination, Linda embarked on a journey that would test her strength. In a place like Invercargill, where there are limited health services, long waiting lists to visit specialists, months of inconclusive tests. Eventually Linda received a diagnosis of Lupus, Rheumatoid Arthritis and Osteoarthritis. Faced with the unknown, Linda, former Police Officer-turned-librarian, researched to understand her newly diagnosed conditions. During her search for knowledge, Linda reached out to Arthritis NZ where she connected with our Arthritis Assist team. Through our support Linda gained an understanding of her conditions as well as tools and knowledge on how to effectively manage her health.

Linda’s positive spirit has propelled her to participate in numerous half marathons worldwide, showcasing her resilience and determination. In February of this year, she took on the challenge of the Ring of Fire, an off-road trail run around Ruapehu, where she impressively secured 3rd place in her age group. Linda’s journey serves as an inspiration and light to those who are newly diagnosed with arthritis. She imparts her wisdom with passion, emphasising the importance of educating oneself about the condition so that you can manage it effectively. Linda advocates for patience and self-compassion while navigating the ups and downs of arthritis, and encourages building a support network. Her mantra of focusing on what can be done rather than what cannot, resonates deeply with those facing similar battles who have reached out to us over the years and are living well with their arthritis.

Linda committed herself to regain control of her life, she implemented techniques such as pacing herself and avoiding overexertion to strike a balance in her ARTHRITIS NZ - MATEPONAPONA AOTEAROA MAGAZINE SPRING 2023

How we help people to live well with arthritis

ARTHRITIS NZ - MATEPONAPONA AOTEAROA MAGAZINE SPRING 2023

Create a Will and leave a legacy Making a Will is one of the most important ways you can protect your family, but around 1,500 people in New Zealand die without a Will each year. With this in mind, we would like to introduce Safewill, a Will-writing platform that Arthritis NZ is working with that shares our vision that New Zealanders with Arthritis deserve to live well. Safewill has made it easier and more affordable for New Zealanders that don’t have a valid Will to protect the people and organisations that mean the most to them. While making a Will online may not be for everyone, particularly those with complex estates, Safewill has helped thousands of people, initially in Australia and now in New Zealand, safeguard their life’s work and legacy. As part of their partnership with Arthritis NZ, Safewill would like to offer all of our supporters a 50% discount to help them protect their loved ones. With this discount you can prepare your Will for just $80.

With many people wary of online security, Safewill places a high priority on data security. Your data is encrypted at all times, in transit and at rest, with continuous improvement in privacy-preserving and privacy-centric access management. Writing a Will is an important step for individuals through many stages of life, so if this is right for you, join the thousands of people who have chosen to use Safewill.

To take advantage of this offer for Arthritis NZ supporters, scan the QR code.

Every Will submitted is reviewed by Safewill’s affiliate law firm, Safewill Legal, to ensure they have been filled out correctly. Safewill’s Will was developed in consultation with specialist New Zealand estate planning lawyers to ensure that it is tailored to the New Zealand jurisdiction and suitable for all New Zealanders.

https://safewill.com/nz/arthritisnz

Arthritis NZ seeks support partners Arthritis NZ is looking for people interested in partnering with us to expand our services in the coming two years. If you are able to commit to a gift of $1,000 or more each year for the next two years and are interested in working more closely with us to help build on our service offering then we would love to hear from you. Fundraising and communications manager Fiona Smith says there will be supporters who have expertise and knowledge that could be harnessed for the greater good. “Some of our supporters have the financial means, interest and relevant skills to help us think through how to expand services so that New Zealanders can continue to receive the best possible support when they are feeling lost and confused in how to manage their condition.” If you’d like to know about becoming a Support Partner more please contact Fiona Smith on 0800 663 463 or email her at fiona.smith@arthritis.org.nz ARTHRITIS NZ - MATEPONAPONA AOTEAROA MAGAZINE SPRING 2023

Interstitial lung disease, Rheumatoid Arthritis, and vaping by Dr. Valerie Milne Interstitial lung disease (ILD) is a group of disorders that cause progressive scarring of lung tissue. ILDs can be caused by long-term exposure to hazardous materials, or by an auto-immune disease such as Rheumatoid Arthritis (RA).

Educating people about the causes of ILDs and to take steps to reduce exposure to harmful substances for example, occupational exposure to coal dust or asbestos, and also substances that increase risk such as smoking and vaping, which have the potential to trigger ILDs or make existing ILDs worse.

ILDs occur in approximately 5 – 10 % of people with RA and about half of the people with RA have changes in the lungs that could a . co m a nv indicate an undetectable ILD. ia C v y ra r While clinicians may be lib to o h cautious about prescribing ep nc immunosuppressants with an ILD, studies have found methotrexate use is not associated with an increased risk of RA-associated IRD.

Vaping particles are similar in size and concentration to tobacco smoke and are distributed in the lungs in a similar pattern. Some enzymes in the lung are elevated in vapers, also similar to elevation in cigarette smokers. An excess of these enzymes can trigger, or make worse, several chronic diseases including RA and cardiovascular disease. These factors indicate that vaping may be as harmful as smoking in terms of chronic lung disease as well as causing acute, life-threatening lung injury.

Symptoms of an ILD include a dry cough, and a gradual and increasing shortness of breath either after activity or when resting. Treatment of ILDs varies depending on the underlying cause and the amount of lung scarring that has occurred. Once scarring has occurred it usually cannot be reversed. Slowing lung damage and maintaining quality of life and increasing the chance of survival are the goals of treatment. Common ILD comorbidities include gastro-oesophageal reflux disease, sleep disorders, cardiovascular disease, diabetes, lung cancer, and pulmonary hypertension.

While e-cigarettes are an important part of smoking cessation and tobacco harm reduction programmes, the health impact of vaping on people at risk of developing RA, or with a pre-existing risk of ILD due to RA remains unknown. Should the cautionary principle be considered when advising people living with, or at risk of RA? If so, vaping should not be recommended as part of a smoking cessation plan. Note: A recent US cross-sectional study has also found that E-cigarette use may increase inflammatory arthritis risk.

The risk of vaping leading to ILDs Not enough is known about the risk of vaping to understand the risk of the aerosol compounds in e-cigarettes that can lead to IRDs and that can cause acute, life-threatening lung injury. Vaping has been shown to have similar effects to smoking with airway irritation and inflammation and linked to increased symptoms for people with chronic airway diseases such as cystic fibrosis, asthma, and chronic obstructive pulmonary disease.

To find the references for this article, scan the QR code on this page. https://tinyurl.com/mr2w9b3a

ARTHRITIS NZ - MATEPONAPONA AOTEAROA MAGAZINE SPRING 2023

Lupus SLE incidence and prevalence studied for first time in 40 years Arthritis NZ Lupus/SLE Postdoctoral Fellowship Research Update: Incidence and prevalence of systemic lupus erythematosus (lupus SLE) in New Zealand from the national administrative datasets.

6 facts from the first study in 40 years • • • •

• •

Pacific people have the highest prevalence of lupus SLE than any other ethnic group in New Zealand. Māori and Asian people also had around twice the incidence and prevalence of Europeans/ others. The incidence of juvenile SLE (or SLE in children) is higher amongst Māori Tamariki compared with European children. The increasing lupus SLE prevalence in the elderly is likely due to the improving life expectancy and advancing treatments for SLE and lupus nephritis. Most SLE patients are women which may be attributed to differences in the metabolism of sex hormones. The cause of SLE is unknown, but it is believed to result from a complex interaction between genetics, environmental exposures and hormones.

Dr Chunhuan Lao’s first research paper has been published and covers the “incidence” and “prevalence” of lupus SLE. “Incidence” and “prevalence” are technical terms often used in epidemiological or population studies. “Prevalence” describes the total 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 particular disorder, condition, or disease over a period. This study also examines the differences between ethnic groups using the national administrative datasets. Knowing the incidence and prevalence of lupus SLE in New Zealand is extremely important as it enables health services to understand the changing needs of lupus management and treatment.

During the timeframe of the data, most lupus SLE cases diagnosed were between the ages of 15 and 45 years. In New Zealand, the incidence of juvenile SLE is higher in Māori compared with European children, and Māori children are more likely to be diagnosed with lupus nephritis, which can severely affect kidney function. The prevalence of lupus SLE has increased substantially since the last time this was calculated in 1983. The biggest increase in prevalence was in the elderly. This is probably because of the improving life expectancy as well as advancing treatments for lupus SLE and lupus nephritis. The datasets also reveal that most lupus SLE patients are women. This may be attributed to differences in the metabolism of sex hormones and other genderrelated activity in the body. It was also found that during the childbearing age, the ratio of females to males is nine to one, with a lower ratio seen before puberty and later in life. The cause of SLE is unknown, but it is believed to result from a complex interaction between genetics, environmental exposures and hormones. In New Zealand, Pacific people die younger, and have higher rates of chronic diseases than other New Zealanders. Social and economic factors are known to contribute significantly to Pacific peoples’ relatively poorer health status. Over half of Māori and Pacific lupus SLE patients were living in the most deprived areas compared to Asian and European/others. Dr Lao presented these findings in August 2023 at the New Zealand Rheumatology Association Annual Scientific Meeting in Queenstown. Her contribution was very well received, leading to her being awarded the “Best Presentation on Lupus” at the Awards Dinner.

Dr Lao’s Next Steps:

SLE is the most common type of lupus, with about 70% of the lupus cases being systemic , or having the potential to affect a person’s entire body. Lupus SLE affects millions of people worldwide. Pacific people had the highest incidence and prevalence of lupus SLE, with four times the incidence rate and three times the prevalence rate higher than Europeans/ others. Māori and Asian people also had around twice the incidence and prevalence compared to Europeans and other ethnic groups.

The next phase of Dr Lao’s work will see her prepare an article on the treatment of end-stage kidney disease amongst lupus SLE patients and this will be submitted the international Journal of Renal Care. She will also undertake an analysis of treatments for lupus SLE patients, with a specific focus on differences by ethnicity, gender and age group.

Scan the QR Code to read the published journal article. https://tinyurl.com/y738nvv9

ARTHRITIS NZ - MATEPONAPONA AOTEAROA MAGAZINE SPRING 2023

A day in the life of

Tory our Arthritis Assist Team Leader 6.30 am

Usually I wake up around 6.30 am after being attacked by kisses from my 8month-old puppy, Loki. He knows it's time for walkies! As we walk, the sun rises and I prepare myself for the day. I have osteoarthritis in my toes and hands so getting myself moving every morning is part of my wellness plan.

CONNECTING WITH THE COMMUNITY

9.00 am

Once I'm at work, I compile our tailored support packs to people's diagnosis and get them ready to mail out.

Thanks to our supporters, the information is medically reviewed and helps people manage their condition, their pain and get the best from life.

10.30 am

Then it's time to hit the phones! Our supporters enable us to provide one-to-one support to people struggling with symptoms. I get a call from 65 year old widower Sally, who has Osteoarthritis in her lower back. She's struggling with the pain and there are tears in her voice. She hasn't been able to walk and she's had to stop pursuing her passion, gardening. She tells me how she has become depressed and socially isolated. Her family don't live nearby to help her either.

KA KITE 4.30 pm

After some extra admin tasks, I pack up and head home, back to Loki, my husband and three kids. Luckily, we have a cooking roster and it's not my turn to cook!

That's just as well as I am studying for a Diploma in Health Coaching so I can offer even better support to people with arthritis.

“I am so grateful to our supporters who make our work possible. I wish they could see how they help people journey from feeling helpless and afraid to feeling capable and confident.” 08

PREPARATIONS FOR PRESENTATIONS 2.00 pm

After lunch, I work on a presentation that I will present to a group of about 50 people who want to understand more about how to live well with arthritis. This is just one of these types of information sessions we try to bring to regions across the country.

“It's basically about helping people to change their habits and empower themselves to take control of their health condition. It really helps me in my work!”

ARTHRITIS NZ - MATEPONAPONA AOTEAROA MAGAZINE SPRING 2023

10.45 am

I talk to her about how to warm up her body in the morning and the importance of movement. I talk to her about tips and tools to help her get dressed such as a sock aid, because not being able to get dressed brings down her mood for the day. We arrange that I will send her some tailored information so she can learn more about how to manage her condition.

I’ll also offer to match her with a trained volunteer who has a similar condition to Sally, who can offer her emotional support and advice. She says she will think about it. In the meantime, she agrees to join our next webinar on pain management and visit our Facebook page to join our private group for people with Osteoarthritis.

By the end of the call, Sally is sounding better and more hopeful. She tells me she is going to accept an invitation to go swimming with a friend at their local pool. She'd put it off but after hearing how important movement is, she is going to give it a go. Sometimes people can't see the light at the end of the tunnel when they are in so much pain.

Helping people see possibilities is one of the most rewarding parts of my job 12.00 pm

TIME FOR UPDATES 12.30 pm

I update the case notes for both Sally and Caleb because often I get repeat calls. Last year, we worked on 970 cases from across the country.

When he first got Gout, he went to the pharmacy, and he's been managing his condition with pain killers and anti-inflammatories. I encourage him to see his doctor and advise him on what medication to ask his doctor about. He was surprised and delighted to learn that if he is on the right medication at the right dosage, it may eliminate his flare-ups completely.

11.00 am

The call takes half an hour and another half an hour of my time to pull together a specialised pack for Sally based on the information from the call.

11.30 am

After a quick coffee, I receive another call from 48-year-old Caleb from Hamilton. He's had a flare up from Gout Arthritis and hasn't been able to walk properly or put on his work boots. He feels angry and frustrated. Caleb has three kids and he's not working. It's putting extra pressure on his family.

“Their support helps people learn how to get the most from life in ways they possibly didn't before they had arthritis.” Thank you! Tory xx ARTHRITIS NEWAOTEAROA ZEALAND MAGAZINE 2021 ARTHRITIS NZ - MATEPONAPONA MAGAZINE OCTOBER SPRING 2023

Tips for spending less money on food by Tracey Kellett, Registered Nutritionist 1. Cook once, eat twice or three times Cook more than you need, split the rest into portions, and freeze. This is especially good for one-pot meals like Mexican mixes, chilies, curries, and casseroles and can even be done with staples like whole grains. Having pre-cooked portions of frozen brown rice or quinoa in the freezer can make the next meal just a little bit quicker. Portioning your leftovers to freeze also means you have work lunches ready to go or spare healthy meals for your hungry teenagers.

2. Avoid the supermarket Wherever possible, buy fresh produce from a local fruit and vegetable store. Compare prices; some of the chain fruit and veggie stores have prices that may be higher than your local fruit and vegetable store. If you’re missing one or two things from your recipe, use what you have at home. Just popping into the store for a few things increases your chances of impulse buying and could easily add $50 to the grocery bill. If you can, shop online to avoid impulse buys. When you do have to go to the supermarket, make it a planned shop and take a shopping list.

3. Have a relaxed plan Decide on meals for the week with your whānau. Write a shopping list and stick to the plan as much as possible. Planning leaves little room for impulse buys and throwing out unused food at the end of the week. The plan needs to be relaxed so you can take advantage of what’s on special at the supermarket or what vegetables/ protein is available. Try not to get too hung up on

specific recipe ingredients if the price for these has shot up. There’s plenty you can substitute with, so bring a go-with-the-flow attitude to your shopping.

4. Compare prices of foods in the same category A food category is the same type of food across different brands. For example, canned tomatoes are one food category; yoghurt is another. For most packaged items, the price tag includes the price and the price per 100g, 100 mL, or 1kg. This is usually in tiny print, so you may need your glasses for this one. Once you’ve got a good idea within the category you are shopping for, you won’t have to check all brands every time, maybe just the one you usually buy and the one that is on special that week.

5. Bulk up with beans Beans are not only super good for you, but they are cheap! Buy them dried from independent grocers that sell in bulk and save even more. Add to salads, casseroles, and mince dishes, blend in pasta sauces and soups, and mix in with mince dishes to help your mince go further. Beans are a great source of plant protein and are about a 50/50 carbohydrate/protein composition food. Canned beans, like lentils and chickpeas, are more convenient than cooking dried beans from scratch but cost a little more.

6. Buy in season Thanks to our current food environment, many of us don’t know what’s in season and what isn’t. Usually, the cheaper vegetables and fruit are the ones in season, and those produced in Aotearoa are another good sign they are in season. Visit vegetables.co.nz to find a helpful seasonal calendar you can look at before you hit the stores.

ARTHRITIS NZ - MATEPONAPONA AOTEAROA MAGAZINE SPRING 2023

7. Quick-sell items

10. Looks aren’t important

These are consumable products close to their best before or use-by dates. Make sure you will eat/cook/freeze anything you buy on the use-by date. Food can usually be eaten a few days after the expiry or use-by date. Food can be eaten for some time after its best-before date; it just may not look or be at its best. Quick-sell items are usually going for a lot cheaper than their retail price. There are independent stores dedicated to quick-sell food items across New Zealand. Most places that sell food will have a dedicated area for quick-sell items, usually at the front of the store.

Like conventional beauty standards, we’ve been sold a “look” that our fresh fruit and veggies must adhere to, to be acceptable for supermarket shelves. But when it comes to health and cooking considerations, looks don’t matter. Check out the Odd Bunch bags of produce that don’t fit into the tight supermarket selection criteria but still taste and act the same. Look for local delivery companies operating on the same premise, such as Wonky Box. They deliver seasonal fruit and vegetables that, as the name suggests, are full of character.

8. Get to know the contents of your fridge

11. Grow your own

We are all guilty of saving half a can of something in the fridge and throwing it out a week later. Spend some time getting to know the contents of your fridge before you cook. Let the food that needs to be eaten inspire your meal choice. New Zealand households throw out an average of $644 worth of food each year. Visit LoveFoodHateWaste.co.nz for great ideas on how to use all of your vegetables and reduce your household food waste.

Depending on your living environment, this may be easier said than done. Start-up costs are involved for soil or growing containers if starting entirely from scratch. You don’t have to buy seeds, as much of the produce you buy can be used to plant your garden. We recommend that you research what you can grow in your space. You may be able to grow more than you think, or at least some fresh herbs or salad leaves. Tuigarden.co.nz has a helpful planting calendar for different regions in Aotearoa.

9. Food-share Use food share apps like Olio and Foodprint. Olio is a platform where people give things away for free, including food. FoodPrint rescues food from retailers that would otherwise be thrown out. The best eateries usually sell out quickly on the app, so get to know your local cafe’s end-of-day routine to grab your favourite salad for a fraction of the regular price. Take the food you don’t need to your local Pātaka Kai (food pantry) and pick something else up. Be mindful that some people in the community rely on these for kai, so try to give more than you take.

ARTHRITIS NZ - MATEPONAPONA AOTEAROA MAGAZINE SPRING 2023

Q&A with a GP

Frequently Asked Questions about where your general practitioner (GP) fits in your health team – an interview with Dr Emma Dunning, GP, Healthify.

by Joanne Taylor Q: Why is it important to be in charge of my own health care? Being in charge of your health care gives you better health outcomes. People with painful conditions have less pain if they manage the pain themselves. Nobody knows your experience, nobody knows your body, nobody knows what’s important to you better than you do. Any health care provider is working with what you have told them and their interpretation of what you have told them. The doctor’s role is to help support you to look after your health rather than to tell you what’s important. Q: Is it helpful to describe my pain to my GP? Yes, it is. There are some characteristics of pain that GPs are trained to understand. A GP may ask about the character of the pain - is it burning, is it like an electric shock, is it sharp, is it dull or aching? The GP might also ask about the pain pattern: Is it morning, evening, or after exercise? Does anything make it better or worse? Do painkillers make it better or worse? Does heat or cold make it better or worse? Q: How can I find out what side-effects my medication could cause - if my GP didn’t tell me? Pharmacists are fantastic because they love these questions, and curly questions about different medications. Pharmacists also have long-term conditions funding, so many of them can put you on their long-term conditions programme and let you have an appointment with a pharmacist to go through your medications with proper time and attention to answer all your questions.

Q: What if I think I have a condition, but my GP insists it’s rare and unlikely? How can I push the GP to do tests? Your GP should be able to provide reasonable reasons why they think it is not what you suspect it is. If there isn’t a reason or they can’t explain it in a way that makes you accept that their explanation is reasonable, then you should explain why you think it is possible that you might have a certain condition. You could also get a second opinion from another GP. Q: Am I entitled to all my medical records, including old X-rays, for example? Yes. Legally, you can ask any organisation for a copy of all the information they hold about you – including GPs and hospitals. They might need that request in writing. Sometimes, they won’t be able to find old medical records. Physical X-ray films in particular, might not be kept, but there could be the radiologist’s report about what it showed. Q: I have heard of online portals like ManageMyHealth – should I use this? Yes. If you can confidently use online platforms like internet banking, then yes, you should use an online portal if your GP practice offers this. Ask your medical centre receptionist if they have one.

Some websites have medication information in plain English – one is the Healthify website (www.healthify.nz), and another is the consumer information leaflets on the Medsafe website (www. medsafe.govt.nz). Q: Should my GP know about arthritis? Yes. Arthritis is incredibly common. Every GP should know about osteoarthritis and gout arthritis. Every GP should know about rheumatoid arthritis and inflammatory arthritis in general and be able to provide information. They may have a background level of knowledge of rarer types of arthritis. For rare or complicated types of arthritis, you will likely be under specialist care, and if you bring a question to your GP, they will tell you to ask your specialist.

ARTHRITIS NZ - MATEPONAPONA AOTEAROA MAGAZINE SPRING 2023

Some tips to arrive at your appointment prepared: • • •

• •

Take written notes of what you want to talk about. Take a pen and paper to write new notes. Leave a copy of your list of questions or concerns with your GP if they ask – they might want to look it up later and come back to you with advice and answers. Take someone with you to help you remember what to ask and help you remember what the GP spoke about. Book a double appointment in advance when your prescriptions are due – that way, there is more likely to be one available, and you won’t feel pressured to squeeze everything into the 15-minute time slot.

An interview with a rheumatology nurse Q: What are the most common conditions that you encounter?

by Tory Garnham Arthritis NZ visited Taranaki health professionals to raise awareness of our Arthritis Assist service that can help empower health providers who provide support to their patients. We brought along some of our best resources that health providers can use to help their patients live well and thrive. We also sat down with Jane Brough, clinical nurse specialist, Rheumatology, Te Whatu Ora, Taranaki Base Hospital, for a Q&A about her role at Taranaki Base Hospital.

Q: What does your role as a rheumatology nurse in Taranaki involve? JB: I work closely with rheumatologists and other healthcare professionals to provide comprehensive care to patients with inflammatory arthritis and other autoimmune conditions. I assess and monitor patients, administer treatments, educate patients and their families and support them in managing their condition and maintaining their quality of life. I am the only rheumatology nurse employed in the Taranaki region, and I have 1,500 patients.

JB: The most common would be Rheumatoid Arthritis, but there is a huge range of conditions; we see patients with Psoriatic Arthritis, Ankylosing Spondylitis, Lupus, Scleroderma and many more. These conditions can vary widely in their symptoms, severity and treatment approaches, so it’s important for us to have a comprehensive understanding of each condition to provide personalised care to our patients.

Q: How do you help patients manage their symptoms and maintain their quality of life? JB: As holistically as I can. Managing inflammatory arthritis involves a multi-faceted approach. We focus on a combination of medication management, patient education, lifestyle modifications and symptom management techniques. Medication prescribed by rheumatologists can help relieve pain and inflammation. Patient education plays a crucial role in helping patients understand their condition, treatment options and self-management techniques. We also encourage patients to adopt healthy lifestyle habits such as regular exercise and stress management. Additionally, we assist patients in accessing additional resources like physical therapy or occupational therapy to improve their overall functioning.

Q: How do you support patients who “It’s great to see may be dealing with the emotional Arthritis NZ promoting and psychological impact of awareness and education living with an inflammatory around living well with condition? arthritis. As a rheumatology JB: I try and support where nurse, I am grateful for the I can, and I encourage open support and resources provided communication, allowing patients by Arthritis NZ. They will play a to express their concerns, fears, vital role in complementing the and frustrations. I can refer my care we provide and empower patients to counselling, and I encourage my patients to join patients to be active support groups like you have at participants in their Arthritis NZ. We educate patients about health journey.” stress management techniques, relaxation exercises and other self-care strategies to help improve their overall wellbeing.

Jane Brough, clinical nurse specialist, Rheumatology ARTHRITIS NZ - MATEPONAPONA AOTEAROA MAGAZINE SPRING 2023

Q: What advice do you have for patients who are newly diagnosed? JB: It’s crucial for them to understand that they are not alone in their journey. Seek information about their condition from reliable sources, such as Arthritis NZ and medical professionals. Build a strong support network including health providers, family and friends. It’s important for patients to ask questions, voice their concerns and actively partake in their own health care. Lastly, I would encourage them to take things one step at a time, be patient with themselves and focus on self-care and overall wellbeing.

Keep your life

moving

Q: As a healthcare professional how do you stay up to date with the latest developments in rheumatology? JB: I listen to a lot of podcasts and read research from overseas. I also love to attend conferences, but this isn’t always possible due to lack of funding.

Q: How difficult is it not to have a full-time rheumatologist on hand and you being the only rheumatology nurse in the region? JB: In Taranaki, we have three rheumatologists serving the region. One of them is based in New Plymouth and is part time; the other two travel from Waikato and Hawkes Bay. As the only rheumatology nurse in the area, I have had to adapt to each specialist’s unique approach and then effectively communicate their diagnosis to the patients. Whenever I have the opportunity, I try to shadow them during appointments, learning from their expertise. I find it helpful to be able to observe them, and it’s a great way to enhance my knowledge and skills in the field. However, it can be challenging to juggle the varying approaches and styles of each specialist. I love my job, but I do wish there was more of me to meet the growing demands of the patient population, and I do worry that I am not enough.

Supports joint mobility

Supports joint stiffness

Supports joint comfort

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ARTHRITIS NZ - MATEPONAPONA AOTEAROA MAGAZINE SPRING 2023

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.

Success for annual golf day Sharp NZ is a proud supporter of Arthritis NZ – Mateponapona Aotearoa and for the past three years, Sharp NZ has partnered with us to run an annual fundraising golf tournament. More than $45,000 has been fundraised for our Families Camps so far. This year we had a successful field turnout with 17 teams participating in the annual golf event. It was an awesome one team effort across the Arthritis NZ Heather Verry, Maurice Roberts, Peter Schenk and Arthritis NZ Chief Executive Philip Kearney. team, and the Sharp sales and support teams, with everyone learning, having fun and most chipping in to help to make it a importantly, connecting with other successful day. Fundraising efforts families on the same journey. came from team sponsored Families Camp is a safe entries, an auction and a environment for children bunch of raffles/donations with arthritis to take part on the course. Sharp NZ in activities like abseiling, and Arthritis NZ are proud flying fox, archery, raft of the efforts of many building, kayaking, to help make this such a swimming and games. successful day for all. The Arthritis NZ Families Camp, previously called Childrens Camp, is held each year in late February or early March, in Matamata, and sees children with arthritis and their caregivers, spend a weekend

Families often find camp a considerable boost as they discover they’re not the only ones facing the challenges that an arthritis diagnosis brings. It’s a place to make friends with others who understand what they’re going through.

Thank you to all our 2023 Sponsors

ARTHRITIS NZ - MATEPONAPONA AOTEAROA MAGAZINE SPRING 2023

Together we can transform lives and ensure all New Zealanders with arthritis can live well. People we love are suffering from arthritis. Many forms of arthritis can be managed well with the right support, education, and resources. By supporting Arthritis NZ you can help improve the lives of people with arthritis.

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ARTHRITIS NZ - MATEPONAPONA AOTEAROA MAGAZINE SPRING 2023

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