www.arthritisnsw.org.au RRP $5.95
ARTHRITIS AUTUMN 2013
& OSTEOPOROSIS
MATTERS
JIA NEW MODEL OF CARE
SHANNEEN & JOHN
CARING FOR EACH OTHER
Focus on: Lupus
Latest Update: OSTEOPOROSIS
Interview with Lauren Harris TWO YEARS ON...
SPECIAL CARERS EDITION:
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ARTHRITIS MATTERS / AUTUMN 2013
Contents
Upcoming Events
REGULARS
MARCH 2013
From the CEO
4
Community
5
Q&A
6
Nutrition
7
Osteoporosis 16
Monday 11: Anna-Louise Bouvier webinar Sunday 17 – Saturday 23: Arthritis Awareness Week Saturday 23: Kidsflix, Greater Union Cinema, Miranda
Monday 25:
Arthritis Information Session, Kogarah RSL Club
Thursday 28: Arthritis Seminar,
Albury Commercial Club
Kids’ Corner
22
Out of Joint
29
APRIL 2013
Local Happenings
30
Wednesday 10: Osteoporosis Program
Branch Listings
33
Health & Fitness
34
FEATURES
Saturday 27: William’s Walk, Bondi Sunday 28: Williams’ Walk, Penrith Tuesday 30: Moving On Generic Chronic
MAY 2013
Focus: Lupus
8
Special Edition: Carers
10
Latest Update: Osteoporosis
18
JIA: Latest Module of Care
20
Case Studies: Caring for Each Other 23 Interview with Lauren Harris
Wagga Wagga RSL Club
26
Disease Education Program, Pennant Hills Community Centre
Thursday 2: Fibromyalgia Webinar Saturday 4: Kidsflix, Hoyts Cinema, Erina/Gosford
Monday 27: Pain Management Seminar,
JUNE 2013:
Thursday 6:
Lithgow Workers Club
OAK, Sydney Eastern Suburbs
For more information or to register for any of these events, contact Arthritis NSW on 1800 011 041 or visit arthritisnsw.org.au
Arthritis affects 1 in 5 Australians
Your bequest can benefit people in NSW living with arthritis. Arthritis is the leading cause of disability and chronic pain. It can affect anyone, young, old, male or female. But something can be done. By leaving us a bequest, you can help us: Fund research into the cause and ultimately help to find a cure Help children with juvenile idiopathic arthritis (JIA) Provide free information and services to people with arthritis Run seminars and community education sessions Conduct Tai Chi and warm water classes. To find out how you can make a bequest to Arthritis NSW, please contact us on 02 9857 3300 or visit arthritisnsw.org.au
ARTHRITIS & OSTEOPOROSIS
MATTERS
AUTUMN 2013 Arthritis NSW & Osteoporosis NSW Locked Bag 2216, North Ryde NSW 1670 1.15/32 Delhi Road, North Ryde NSW 2113 Phone: 02 9857 3300 Fax: 02 9857 3399 Web: www.arthritisnsw.org.au ABN 64 528 634 894 CAN 000587299 CFN 12845 Copyright© 2012 Arthritis NSW Arthritis Matters is mailed out to members and subscribers throughout NSW. Information & Helplines Arthritis: 1800 011 041 Osteoporosis: 1800 242 141 Advertising: To advertise in Arthritis Matters call 02 9857 3300 Contribution and Advertising Closing Dates: Winter 2013: 26 April Spring 2013: 30 August Patron: Her Excellency Prof Marie Bashir AC, Governor of NSW President: Mr Greg Monaghan Vice President: Ms Judith Cantor Hon. Treasurer: Mr Dennis Messner Company Secretary: Mr Evan Manolios Directors Assoc. Prof. Nick Manolios, Ms Cosi Pupo, Mrs Doris Carrall and Mr Allan Ryan Chief Executive: Karen Filocamo Manager Health Promotion & Service Development: Di Spragg Marketing and Fundraising Manager: Rob Novotny Senior Fundraising Officer: Bianca Elhage Senior Health Promotion Officer: Eloise Milthorpe Health Promotion Officers: Alex Jaksetic and Jenny Ly Business Manager: Michael Fazio Finance Assistant: Clarissa Jones Receptionist/ Information Officer: Ingrid Player Membership Officer: Melissa Denham Executive Assistant: Clare Riordan Community Liaison Officer: Nena Doyle Design: Sensory Creative Advertising Policy Statement Products and services advertised in Arthritis Matters are not necessarily recommended or endorsed by Arthritis NSW. Some readers may assume that anything advertised in these pages has been cleared, vetted or in some way approved by the charity. This is not so. Arthritis NSW is not equipped to test and approve products and services that are available to the general public. Please exercise careful judgment about whether the item or service is likely to help you personally, and where appropriate, take professional advice from your doctor or specialist before making a purchase. Whilst all reasonable care has been taken to ensure the accuracy of information inside Arthritis Matters, no warranties or guarantees are given nor any responsibility accepted by the publishers, its agents or anyone else involved in its production for any errors which may occur. Nothing contained inside is intended as medical advice – always consult your doctor regarding treatment or medicines.
4
FROM THE
CEO
In this issue we explore the role of carers. These people are so valuable to our community and yet they often go unrecognised. A carer can be any age and may even be a child caring for a parent. There are places where carers can obtain support and we look at some of these. We hope you will also enjoy the carer stories. Please think about whether you or a family member can participate in William’s Walk this year. This was one of our most successful fundraising events in 2012, giving people the opportunity to get outside and enjoy the wonderful locations of Bondi and Bronte beaches. This year we have added a second location – the International Regatta Centre in Penrith. William Harris, in whose memory the event is held, was from the Penrith area and his family still lives there. Details about both walks are in the magazine. We also have an interview with Dr Davinder SinghGrewal, a Paediatric Rheumatologist who we work closely with at Arthritis NSW. Dr Singh-Grewal talks about the collaborative work we have been doing to create a better model of care for children with Juvenile Idiopathic Arthritis and other rheumatic conditions in NSW. You may not know this, but the level of services for these children in our state is well under that of other states, as well as below international benchmarks. Together, we are trying to convince health service decision makers in NSW that we need to do better.
Karen Filocamo NEXT ISSUE Out June 2013 Front Cover: Shaneen and John Bagala, Members of Arthritis NSW Location: Camperdown Park Photographer: Nick Bowers
DO YOU HAVE ANY FEEDBACK OR SUGGESTIONS FOR ARTHRITIS MATTERS? If you do, e-mail info@arthritisnsw.org.au
ARTHRITIS MATTERS / AUTUMN 2013
Community News FIRST NEWSLETTER FOR MY CHOICE MATTERS The NSW Government has recently created My Choice Matters, the NSW Consumer Development Fund. The $5 million fund was set up to help people with disability, their families and carers to get the most out of the changes to disability supports. The first newsletter for My Choice Matters included information about how changes to disability supports will impact carers and people with disabilities and how My Choice Matters can help you make the most of the changes. To download the newsletter, visit www.mychoicematters.org.au
MEDICINE SUBSIDY FOR SUFFERERS OF CHRONIC NERVE PAIN In November 2012, Health Minister Tanya Plibersek announced the Gillard Government’s decision to subsidise the medicine pregabalin (Lyrica®) through the PBS at a cost of $447 million over five years. Ms Plibersek said pregabalin was the first PBS listing specifically for chronic nerve pain, which has a variety of causes and symptoms and which can be difficult to treat. With over 270,000 Australians using this medicine, Lyrica® is indicated to treat fibromyalgia, diabetic nerve pain, spinal cord injury nerve pain and pain after shingles. The listing comes on top of new and extended listings for 10 medicines announced on 24 October and is in addition to 100 new medicines or extensions to medicines that the Government approved last financial year at a cost of $546 million over five years. For more information visit www.health.gov.au
KNEE REPLACEMENT RISKS HIGHER AMONG MEN A new study in the US finds that men undergoing total knee replacement are more likely to develop certain complications, including wound infection and have higher revision rates at five years than women do. But researchers stress the surgery is still very safe and effective. To read more about this study, visit www.arthritis.org.au
FRUSTRATED WITH HARD TO OPEN PACKAGING – RELIEF IS AT HAND Arthritis Australia has developed a new report known as the Initial Scientific Review (ISR) in collaboration with NSW Health Support Services, Nestlé and Georgia Tech. The ISR estimates the percentage of the population who will be able to open packaging, identifies design issues and provides solutions for improvements. Arthritis Australia has already evaluated nearly 100 products for over 40 companies using the ISR. Companies now using the ISR include Nestlé, Amcor and Goodman Fielder. For more information visit www.arthritisaustralia.com.au
NEW APPOINTMENTS STRENGTHEN BONE AND JOINT RESEARCH The chance of relief from common but crippling forms of joint diseases such as arthritis and osteoporosis has been boosted with the establishment of a second Chair in the field of rheumatology at the University of Sydney. Arthritis specialist and Professor of Medicine, David Hunter, has been appointed Florance and Cope Chair of Rheumatology while fellow joint and bone expert Professor Lyn March will assume the role of the newly formed Liggins Chair of Rheumatology and Musculoskeletal Epidemiology. The Florance and Cope Chair of Rheumatology was formed almost 30 years ago and has been instrumental in advancing research and education in musculoskeletal sciences. While Professor Hunter’s work has been focussed on clinical and translational research in osteoarthritis, Professor March has been conducting clinical trials in fish oil, glucosamine and stem cells for osteoarthritis and leading an international group measuring the global burden of musculoskeletal disorders. Dean of the Sydney Medical School, Professor Bruce Robinson said “We have found two exceptional clinical leaders who will sustain and build on our established strengths and ensure that Sydney Medical School remains at the forefront of bone and joint research.” For more information visit www.arthritisaustralia.org.au
5
Q&A
Q&A
Welcome to Q&A, a section providing you with the opportunity to ask any question you may have regarding arthritis or osteoporosis. If you do have a question, please e-mail us at info@arthritisnsw.org.au or call 1800 011 041. Please note: not all questions will be answered in the magazine.
HOW CAN ASSISTIVE EQUIPMENT HELP? Joints affected by arthritis are usually weaker and less stable than normal joints, making them more vulnerable to damage. Changing the way you do everyday activities can reduce the stress on your joints. Using assistive equipment and gadgets can help protect your joints and conserve your energy when performing tasks around the home, at work and out in the community. Similarly, appropriate use of assistive aids and equipment can make caregiving tasks easier and can help protect a carer, and the person they are caring for, from strain and injury. Here is a snapshot of how assistive aids and equipment might enhance the independence and safety of people living with arthritis: sticks or frames to help * Walking the person get around more
easily and reduce the risk of a fall
*
Shower stools or chairs to minimise fatigue and prevent a fall
grip and to protect smaller joints in hands and wrists care cushions and * Pressure cushioned mattress toppers to ease pressure on painful joints
sponges and toe * Long-handled wipers to extend reach and
support back rests * Lumbar to maintain good posture and
aids such as button * Dressing and zipper hooks, long-handled
and shopping trolleys * Laundry to reduce bending, twisting and
reduce bending
shoehorns, sock aids, Velcro fastenings to replace buttons and zippers, and elasticised shoelaces
and bed raisers to assist * Chair people with hip and knee pain or
who have difficulty getting out of a chair or bed
sticks to help get * Bed in and out of bed toilet frame, with or * Over without a raised seat, for painful knees and hips
ramps and non-slip * Handrails, mats to reduce the risk of a fall turners or lever handled * Tap taps for people with poor grip and to reduce stress on smaller finger joints
and bottle openers; small * Jar electrical appliances (e.g. can
opener, knife or food processor); pot holders; easy-grip cutlery and utensils; and lightweight cookware for people with poor
relieve lower back pain
heavy lifting
easy grip devices, such as * Other key turners, broom holders and pen grips
*
Long-handled, easy-grip gardening tools to extend reach and minimise bending
alarm-call systems to * Personal notify family or an ambulance
in an emergency, which can be useful if a person is wobbly on their feet or at risk of falling
The Independent Living Centre (ILC) is an excellent source of information and equipment advice. Although the ILC does not sell items, the staff can provide a list of suppliers. An extensive range of products is on display at the ILC, which is located at Blacktown in Sydney. If you are unable to visit the ILC, you can call the ILC information line on 1300 885 886 for advice or browse the products on the ILC website: www.ilcnsw.asn.au.
Arthritis NSW also sells a number of handy tools for people with arthritis and osteoporosis. Visit our website at www.arthritisnsw.org.au or contact 1800 011 041 for a products list. Some people prefer to try larger or more expensive products before they buy. Talk to an occupational therapist about your equipment needs (or a physiotherapist for walking aids) and short term loan or hire options that are available in your local area. Contact your nearest hospital or community health service. References Arthritis Australia. At home with arthritis: Simple steps for managing in the home [booklet], 2010. Available from Arthritis NSW. Carers Victoria. Can aids and equipment really make a difference? [fact sheet], updated 2006. Available from Carers NSW: www.carersnsw.asn.au
RECIPES Do you have a healthy recipe you’d like to share? Simply post it to Locked Bag 2216, North Ryde 1670 or e-mail info@arthritisnsw.org.au.
ARTHRITIS MATTERS / AUTUMN 2013
RECIPES
BAKED HERBED RICOTTA WITH CHERRY TOMATO SALSA
LEMON CHICKEN SKEWERS WITH GREEN OLIVE YOGURT
INGREDIENTS (SERVES 8-10)
INGREDIENTS (SERVES 4)
• 800g fresh, reduced fat Australian ricotta
• 1 teaspoon grated lemon rind
• 1 cup fresh wholegrain breadcrumbs
• 1/3 cup lemon juice
• 1 cup flat leaf parsley, chopped
• 1/4 cup chopped fresh mint
• 1/2 cup basil leaves, chopped
• 1 clove garlic, crushed
• 1/4 cup chopped chives
• 1/4 teaspoon smoked paprika
• 1/4 cup grated reduced fat Australian parmesan
• freshly ground black pepper, to taste
• freshly ground black pepper
• 300g skinless chicken breast fillets, cut into strips
• 2 egg whites
• 1 cup Australian reduced fat natural yogurt
• 250g cherry tomatoes, quartered
• 1 red capsicum, diced
• 2 spring onions, finely chopped
• 2 spring onions, sliced
• 2 teaspoons balsamic vinegar
• 1/2 cup stuffed green olives, chopped
• 2 teaspoons olive oil
• 8 bamboo skewers, soaked
• crisp green salad, for serving
• crisp green salad, for serving
METHOD
METHOD
1. C ombine ricotta, breadcrumbs, herbs, parmesan and pepper.
1. C ombine lemon rind and juice, mint, garlic, paprika and pepper.
2. Whisk egg whites until stiff peaks form and fold through the ricotta mixture. Press into a lined 20cm springform pan and bake at 180°C for 45 minutes until cooked through. Allow to cool slightly before removing from the pan.
2. Toss half the lemon mixture with chicken strips and marinate for 20 minutes. Combine remaining lemon mixture with yogurt, capsicum, spring onions and olives. Refrigerate until required.
3. Toss together the remaining ingredients and serve with a slice of the ricotta torte accompanied with crisp greens.
3. Thread chicken strips onto skewers. Cook on a preheated barbecue or grill plate for two minutes each side or until cooked through. 4. S erve chicken with green olive yogurt and crisp green salad.
7
FOCUS
FOCUS ON ARTHRITIS:
Lupus
LUPUS IS AN AUTOIMMUNE DISEASE THAT AFFECTS ONE IN 700 AUSTRALIANS. WOMEN ARE MORE COMMONLY AFFECTED THAN MEN. THE SYMPTOMS VARY DEPENDING ON WHICH TISSUES IN THE BODY ARE TARGETED. MOST PEOPLE WITH LUPUS HAVE MILD SYMPTOMS WHICH CAN BE CONTROLLED THROUGH MEDICATION. Systemic lupus erythematosus (also called SLE or lupus) is an autoimmune disease. In a normal, healthy immune system the body recognises and destroys foreign objects like bacteria and viruses. With autoimmune diseases, however, the immune system starts to attack objects that are not foreign. Hence the term “auto” (self) “immune.” With lupus, the immune system produces an excess of proteins called antibodies that attach themselves to various structures in the body. The accumulation of these antibodies in the tissues can cause inflammation, damage and pain. For some people lupus may just affect the skin and/
8
or joints. In other people the lungs, kidneys, blood vessels, brain or other parts of the body may also be affected. Lupus can range from mild to life threatening. This very much depends on the parts of the body that are being attacked by the immune system. While inflammation and pain of the skin and joints can impact on your quality of life, the damage that lupus may cause to your major organs, such as the kidneys or nervous system, is much more serious. The most common forms of lupus are the milder forms and most people with lupus enjoy a full life even though they may need to take medications. There are many symptoms for lupus and these can be mild or severe and vary with each case. Aside from a general feeling of being unwell, tired and having a temperature, other symptoms can include:
* Hair loss * Painful joints * Headache * Skin rash * Mouth and nose ulcers * Chest pains (as a result of inflammation of the lining of the heart or lungs)
(low number of red * Anaemia blood cells)
* Poor kidney function * Heart problems (due to an inflamed * Seizures nervous system)
Lupus is a difficult condition to diagnose. There is no single test for the disease, there are lots of different symptoms that mimic problems related to other illnesses, and symptoms vary between individuals. Doctors will examine patients, talk about the history of their symptoms, take blood tests and may carry out other tests, such as ultrasound scanning or MRIs to check affected body systems such as the heart or kidneys. While lupus can affect anyone, it’s more common in women than men and tends to develop during a woman’s child-bearing years. Certain ethnic groups are also more likely to develop lupus, such as African-American women and people from Asian backgrounds. However, lupus can affect men, children and older people. Currently, the cause of lupus is unknown. However, it appears that genes may play a role as well as triggers such as an illness, injury, or a period of stress. This condition affects one in 700 Australians. More people have lupus than AIDS, cerebral palsy, multiple sclerosis and cystic fibrosis combined. Treatments depend on how lupus is affecting the body. There is no cure for lupus but medication helps control the disease. The type of treatment depends on how the body is being attacked. If you would like to learn more about lupus a factsheet is available on our website: www.arthritisnsw.org.au.
CASE STUDY
ARTHRITIS MATTERS / AUTUMN 2013
Cindy admits she was initially scared and very angry at her diagnosis, “I automatically assumed that I would end up like my aunty. I had seen her battle this debilitating condition and I was angry to think that I would have to face the same fate. I was so young! However, when I googled ‘lupus’ and saw such a huge range of symptoms, I was hopeful that my condition wouldn’t be too severe”. About a year after her diagnosis, Cindy was referred to a nephrologist following some concerning blood test results. A kidney biopsy was performed and Cindy was told she had lupus nephritis, which meant the lupus was now affecting her kidneys. It also meant new medications were required. Having been diagnosed with SLE just six months after being married, Cindy says her husband Mathew “... was my rock. He made sure that he was there for whatever crazy emotion I happened to experience; whether it was listening to me rant and rave about how unfair it all was, or simply holding me while I cried and cried trying to understand why this was all happening. He helped to keep me sane and grounded”.
CINDY’S STORY
Lupus, Life & a Baby Boy Cindy Fuda tells us about her experience and the frustrations of wanting to start a family while living with lupus.
Undeniably cruel, lupus most often strikes women between the ages of 15 and 45. As ‘luck’ would have it, Cindy Fuda fit right in with the statistics. At the young age of 24, Cindy was already becoming a well-respected Civil Engineer. She was working on construction projects which often required her to be on-site six days a week working long hours and dealing with high levels of stress. It was a demanding role that Cindy enjoyed. Cindy would later learn that high levels of stress had a direct impact on her health. In 2005, Cindy began to notice that her joints were feeling exceedingly sore and stiff and were often swollen. She would mainly experience these symptoms in her hands, fingers, elbows and knees. Extreme fatigue accompanied the sore joints and it got to the point where Cindy says she needed assistance merely to get out of bed and her husband had to help her to get dressed. Due to the soreness and swelling of her hands and fingers she was unable to do up the buttons on her own shirt. A GP ran various blood tests after Cindy had been to see him to explain how she was feeling. The pathology lab returned the results with a few queries and more blood tests were ordered. Finally, the results confirmed that Cindy had SLE, commonly known as lupus.
“My mum was also very supportive. She had already experienced this with her sister, so it was great having someone that understood how I was feeling,” says Cindy. “I made sure I kept my friends and family in the loop with my condition too, because I wanted them to understand why I had to start adjusting the way I lived by taking time to rest, not being able to attend all functions etc.” In terms of her career, Cindy says her employer was very supportive after her diagnosis. Mathew and Cindy had originally planned to wait a couple of years before starting a family, however this changed with the diagnosis of SLE. Cindy recalls, “each year we would bring up the ‘pregnancy thing’ and my rheumatologist would lecture me about how it was not an option. My kidney doctor on the other hand was much more understanding and supportive”. It was suggested that they should look into IVF or adoption, but they wanted to conceive naturally and persisted with Cindy’s doctors. In 2009, after a ‘stable’ period of health the nephrologist agreed to switch Cindy to medications safer for pregnancy. Unfortunately, her body did not adjust well and she was sick for 3-4 months. Cindy spent time in hospital as her lupus worsened. It wasn’t until April 2010 that Cindy was able to re-try the new medications, although this time at a much higher dose to try to control the lupus. Matthew and Cindy now have a happy and healthy two year old boy and she manages her condition through her medications, and with the help of her ‘support team’ of family and friends. We thank Cindy for sharing her story through Lupus NSW.
9
FEATURE
YOU OR SOMEONE YOU KNOW MAY BE A CARER
Carers come from all walks of life. Many people fulfill a caregiving role without ever formally identifying themselves as a ‘carer’, instead perceiving their caregiving role as a natural extension of the relationship they have with the other person. This article explores the nature of caregiving.
Who are carers? An estimated 2.6 million people in Australia are unpaid carers1. In simple terms, a carer is someone who, without payment, provides help and support to another person who cannot manage without the help of their carer. The person being cared for may be a spouse or partner, a parent or child, a sibling or other relative, a close friend, or an elderly neighbour. As a carer, you might find you are helping with some or all of the following:
* shopping * housework * gardening care, such as bathing, mail, completing forms or * banking * personal * opening toileting or getting dressed paying bills recommended by the * exercises person’s doctor or physiotherapist the person to get up out organising, driving or * assisting * of a chair, bed or car accompanying the person to preparation, such as opening * meal appointments jars, bottles and cans, cutting up medications, such as collecting * food or cooking meals prescriptions or dispensing the providing other practical, emotional, * correct dose social or financial support You may find you are thrown into a caregiving role during, or after a health crisis, or you may have been be caring for someone with an ongoing or chronic condition, such as arthritis. Taking on a caregiving role may be short-term, for example, when a partner, parent or child is experiencing a flare or increase of arthritis symptoms or is recovering from joint surgery or an injury. A caregiving relationship can also evolve gradually with the carer finding they are helping out more and more over time.
Caring for someone who has arthritis Arthritis is a variable condition that affects people in different ways. If the person you care for has arthritis, one of the best things you can do is to learn about the condition. Being able to recognise the common signs and symptoms and understand the emotional impact and lifestyle changes associated with arthritis becomes an important first step.
10
ARTHRITIS MATTERS / AUTUMN 2013
Most people with arthritis will experience the common symptoms of pain, stiffness and unusual levels of fatigue, which can vary in severity from person to person and from day to day in the same person. These symptoms can make carrying out normal daily tasks more difficult, such as gripping and holding objects, turning taps and keys, getting out of a chair, walking up or down stairs, walking long distances, sitting down for prolonged periods of time, or bending down to put on shoes or socks. This doesn’t necessarily mean that the person will need to stop doing these activities; they may just need to do things differently or with additional support. Most people wish to remain as independent as possible. Knowing when to offer assistance or when to stand back is not always straightforward. Ask the person about arthritis, how their symptoms affect them and how you can help. Seek additional information about arthritis and its management from reliable sources such as your GP or Arthritis NSW. Maintain open communication, so you can discuss how you are both feeling and how you can best work together, without stepping on each other’s toes.
Caring for someone when you have arthritis Caregiving can be extremely rewarding, bringing a sense of satisfaction and strengthening the relationship with the person you are caring for. However, caring over an extended period of time can also be physically and emotionally draining. Living with arthritis and juggling your own health needs with those of the person you are caring for can bring additional challenges.
Finding time to manage your condition such as learning about treatment options, staying active to keep your joints moving and muscles strong, maintaining a healthy weight range, eating a variety of healthy foods, incorporating strategies for coping with pain and balancing activities with rest remains essential. Protecting your joints by modifying the way you do things and using assistive equipment can also make caregiving responsibilities easier.
General tips for carers Carers NSW shares these practical ideas for taking care of your needs while caring for others: time for yourself, each day. * Find Schedule time to do something you enjoy such as reading the paper or a book, calling a friend or taking a five-minute break for a cup of coffee or tea on the verandah.
someone to talk to such as a * Find family member, friend or another carer, both on the good days and not-so-good days.
*
Keep healthy and don’t delay your own health needs. Visit your GP for routine checks and take the opportunity to talk about your caring role and how you are feeling while you are there.
up your interests by staying * Keep involved in the things you enjoy or
take up a new interest or hobby such as writing, painting, photography, music, exercise classes or dance.
for and accept help from family * Ask or friends. You may not always need it but have some people on standby for the times when you do.
out about health and * Find community services that can help
Further reading ARTHRITIS AUSTRALIA has produced a number of fact sheets and booklets about different types of arthritis including common symptoms, lifestyle considerations and management strategies. Contact the office on 1800 011 041 to discuss your information needs or visit the Arthritis NSW website: www.arthritisnsw.org.au CARERS NSW provides an extensive range of information sheets for carers, which can be downloaded from www.carersnsw.asn.au ARTHRITIS QUEENSLAND & HOMEINSTEAD SENIOR CARE have developed a booklet called Caring and Arthritis, which helps explain the more common symptoms and lifestyle considerations for people living with arthritis. The booklet can be downloaded from the Homeinstead Senior Care website: www.homeinstead.com.au 1 ABS (2009) Survey of Disability, Ageing and Carers. Sourced from Carers Australia, accessed 30/01/2013, http:// www.carersaustralia.com.au/about-carers/ statistics/ Additional references Arthritis Care. Caring for someone with arthritis [webpage], accessed 22/01/2013, http://www.arthritiscare.org.uk/ LivingwithArthritis/Caringforsomeone Carers Victoria. What is a carer? [fact sheet]. Available from Carers NSW: www.carersnsw.asn.au Carers Victoria. What might caring really mean for you? [fact sheet]. Available from Carers NSW: www.carersnsw.asn.au Tanya deKroo. Caring and arthritis: Practical advice for carers and people living with arthritis. Brisbane: Arthritis Queensland, 2012.
the person you care for and support you as a carer.
11
FEATURE
SERVICES TO SUPPORT
Carers
Karen Filocamo chatting with Barbara Lewis
WHAT IS A CARER? A carer is a family member, partner or friend who provides care and support to people who are frail aged, or have a longer term illness, disability or mental illness. Carers come from all walks of life, can be any age and sometimes even a child may be a carer for their parent. Barbara Lewis is the Manager of the Northern Sydney Carer Support Service, which is a unit within Northern Sydney Local Health District and she agreed to talk to Arthritis Matters about the types of issues faced by carers in the health system.
BARBARA, IS IT FAIR TO SAY THAT CARERS GET FRUSTRATED TRYING TO FIND THEIR WAY AROUND THE MAZE OF SERVICES THAT MAKE UP THE HEALTH SERVICE? Yes, that’s very true and not only in terms of knowing what services are available for the patient and themselves, but also just physically getting around a hospital site. If you look at the new Royal North Shore Hospital, it can be very daunting for a carer, who may also be frail aged, to know where to park and how to drop off their family member within close proximity to their appointment location.
WHAT IS THE ROLE OF YOUR CARER SUPPORT SERVICE? Our primary role is information, education, guidance and support for carers and health staff on engaging with carers. Our service supports carers to access the help they need to support their family member. This may mean providing
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Many people who use health services such as Hospitals and Community Health Centre’s, may not be aware there are services available to support carers and family members. The NSW State Government established the Carer Support Services in each Local Health district in 2003 funded by NSW Health, the aim is to raise the profile of carers as partners in care. them with information on how to access health services or community care services available to assist them e.g. respite, or personal care providers, provision of information is done through brochures and our Internet site, together with telephone and face-to-face engagement with carers. We will work with carers to identify what they need and then guide them to a solution. Every caring situation is different – it may be psychological support for them, education, or a carer support group, or another type of service, such as personal care to relieve the amount of work a carer needs to do for the person they care for. It may mean walking with the carer for some time on their journey depending upon the complexities of the situation. Carers who are likely to be most vulnerable are those without any other family around to help them. I’d say we spend 30% of our time directly working with carers – this includes support groups and education sessions and the other 70% working with health and community care addressing systemic issues where improvements are needed that will help a carer in their caring journey.
DO YOU THINK THE NEEDS OF CARERS ARE WELL RECOGNISED BY HEALTH SERVICE STAFF? This has improved a lot in recent years. There was a time when a carer was completely overlooked by hospital staff and not given information about changes to medications etc, but this is changing for the better. My team works closely with nursing and other health staff to educate them about the role of the carer, engaging with carers as partners in care, and help them understand why carers need to be involved in decision making. The carer may have been managing the patient’s needs very successfully for years, so they shouldn’t be excluded from decision making.
ARTHRITIS MATTERS / AUTUMN 2013
WHAT ROLE DO GENERAL PRACTITIONERS (GPS) HAVE IN SUPPORTING CARERS? GPs are extremely important in helping to direct patients and their carers thought the complex services available in the health system; it is important for patients who have complex health conditions to access the same GP so that the GP can better know and understand what the patient needs. It is not the role of the GP to know the complex range of community care agencies. Commonwealth Carer Respite Carelink Centre on 1800 052 222 can provide information on community care providers e.g. gardening; Home Care; Community Transport in your region.
ARE THERE OTHER CARER SUPPORT GROUPS IN THE COMMUNITY? Yes, we have seen a considerable increase over the past 10 years. For carers in the Northern Sydney region, our service can put people in touch with those most appropriate for their needs. Carers NSW 1800 242 636 can direct people to support groups around the state.
FROM YOUR EXPERIENCE, WHAT ISSUES WORRY CARERS THE MOST? This depends on the age of the carer. Carers who are also frail aged have very specific needs and they are the most vulnerable. Some aged carers can’t even physically push the wheelchair for their family member. Then there is the issue of navigating their way around the complex range of services that may be available. Older carers don’t want to lose control of the caring role and by this I mean, if they have cared for their husband or wife or child for many years, it can have a huge psychological impact on them if it seems that they are no longer seen as being able to provide that care. Transport is also a major worry for carers and again, particularly for older carers. Community transport services are limited. We need clinicians to think about transport issues when making appointments for people. It may be that someone doesn’t really need to come back every two weeks and that perhaps a monthly appointment would be sufficient. This immediately reduces the transport burden for the carer – because they only have to organise transport one a month instead of more frequently. This immediately lessens their worry.
WHAT ISSUES DO YOU THINK OUR CARERS MAY FACE? As we know, arthritis is a co-morbidity for so many other chronic diseases. By this I mean many people who have arthritis may also have other chronic health conditions – such as diabetes, heart disease etc. Therefore, the disability created by their arthritis might also impact on their other conditions and make it hard for them to manage all of the competing demands, medications etc. This is where the GP plays an important role, coordinating the complex range of different medical conditions and having a good overview is very important in the individual’s care. Alternatively, the carer may have arthritis and be caring for a partner who has a cognitive impairment/dementia, bringing with it a range of additional issues. It is important that carers look at their own health needs and seek services if they are not able to provide care for the person they support. Arthritis NSW provides valuable information on what is available for these carers to help them around the home and to manage the condition, so they can stay well and continue their caring role. Personally, I have had valuable information to help my mother who has arthritis. We were provided information on a specialist close to where she lives; the tips for wellbeing, exercises, mobility, food and medication management are covered in the magazines and are extremely valuable. I would like to finish by encouraging carers and the person they care for to approach the caring role as one of a partnership and work together. Things may not always be perfect but together we can achieve better outcomes. Carers are encouraged to consider their own health needs, regular medical checkups are important and reach out for support if emotionally, you are feeling overwhelmed. We can be contacted on 9462 9488 during office hours or visit the website www.nscchealth.nsw.gov.au/ carersupport/aboutus
Arthritis NSW would like to thank Barbara Lewis for her time in participating in this discussion. While Barbara’s unit is based in Northern Sydney and covers the localities within the boundaries of Northern Sydney Local Health District, there are carer support units in other Local Health Districts around NSW. If you would like more details on these, we suggest contacting your local hospital and asking for information.
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FEATURE
Carers NSW
SUPPORT AND ADVOCACY FOR ALL CARERS IN NSW
ARTHRITIS AND OSTEOPOROSIS ARE A MAJOR CAUSE OF SEVERE DISABILITY IN AUSTRALIA. AN ESTIMATED 50,000 AUSTRALIANS RECEIVE HELP FROM A PRIMARY CARER FOR ACTIVITIES OF DAILY LIVING. AS THE PROPORTION OF OLDER AUSTRALIANS INCREASES, AN INCREASE IN DISABILITY IS PREDICTED, AND THERE WILL BE A GREATER DEMAND FOR CARERS.
Carers NSW is the peak organisation for carers in NSW and is the only statewide organisation that primarily focuses on carers. One of their key goals is for all carers to be recognised, valued and supported. Their policy team works closely with carers and other stakeholders to provide feedback to the Government on issues that affect carers.
As well as chronic pain or discomfort, other physical impairments associated with arthritis and osteoporosis exist. These impairments include difficulty gripping or holding objects and incomplete use of hands or feet. This can lead to difficulties with activities of daily living such as showering, eating, taking medication and toileting. Due to severe disability at advanced stages of arthritis and osteoporosis, people may be unable to perform these activities independently and will rely heavily on their carers.
Along with the physical aspects of caring, there is also an emotional element, which can go unrecognised. Caring for someone who is dealing with pain or disability can make carers feel tired, angry, stressed and even depressed. Carers NSW operate a Carer Line, which provides specialist information, advice, emotional support and referral to appropriate forms of assistance. They also provide a National Carer Counselling Program (NCCP), which is a short-term counseling support service for carers.
Caring for someone with arthritis or osteoporosis can be a challenge, particularly the noticeable physical issues. The degree of activity restrictions and mobility limitations varies from person to person, depending on the severity of symptoms and stage of the condition. This makes a carer’s role and degree of support they provide, quite unique and it may seem difficult to find appropriate help. Elena Katrakis, CEO of Carers NSW, offers some comfort: “Carers should remember that they are not alone and that there are a number of support services that can help.”
For more carer information and support, please call the Carer Line on 1800 242 636 (freecall). Alternatively, the Carers NSW website (www.carersnsw.asn. au) contains various factsheets and a database of Carer Support Groups in NSW.
“Independent Living Centre Australia can provide advice on in-home assistive aids that reduce the physical impact of caring. For example, transfer equipment can make it easier for carers to help the person they care for get in and out of bed and, in some cases, can make it possible for the care recipient to get themselves in and out of bed without assistance,” Elena recommends.
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For carers who require support, there are a number of regular support groups across NSW, so carers can share their tips and advice. You may find it helpful to share your experience about the pressures and challenges of being a carer. Carers NSW have a number of education and training programs. Their Older Parent Carer Support Coordination program specifically supports older parent carers who care for an adult child or grandchild. They also have the Young Carer program for carers under 26 years old.
References Australian Institute of Health and Welfare (2010). Primary carers of people with arthritis and osteoporosis. National Centre for Monitoring Arthritis and Musculoskeletal Conditions. Canberra.
ARTHRITIS MATTERS / AUTUMN 2013
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OSTEOPOROSIS
Taking care of your back Physically demanding caregiving tasks such as lifting, carrying, lowering, pushing, pulling, twisting and reaching are common hazards for carers, followed closely by slips, trips and falls. The risk of back strain or injury is high and an increased chance of having a fall puts carers at a greater risk of breaking a bone, particularly if they have osteoporosis.
What is back pain? Back pain is very common, with four out of five people experiencing it at some point in their lives. Back pain that is felt in the lower part of the spine is a sign that the joints, muscles or other parts of the back are injured or strained. Back pain may be felt as a sharp pain, ache or spasm in the middle of the back or on either side. Sometimes pain may also be felt radiating down into one or both legs. Pain that does not settle after a few weeks or is getting worse needs to be treated by a doctor. It is important to seek medical advice if you have osteoporosis and experience sudden or severe pain in your back.
How osteoporosis can affect your back Osteoporosis occurs when bones lose minerals, such as calcium, faster than the body can replace them, which leads to a loss of bone mass or density. Even a minor bump or fall can cause a ‘fragility’ or ‘minimal trauma’ fracture (a break) in an osteoporotic bone. Any bone can be affected by osteoporosis but the most common sites are the spine, hip, upper arm, wrist, ribs or forearm. Fractures in the spine due to osteoporosis can lead to changes in posture, loss of height and back pain. Often people believe that these changes are just due to ‘old age’. However, for many people, osteoporotic fractures of the spine can be prevented or at least the risk of having another fracture can be reduced.
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ARTHRITIS MATTERS / AUTUMN 2013
Osteoporosis How can I care for my back? Having a healthy lifestyle is a good start:
1. STAY ACTIVE. Your back is designed for movement. Exercise can help improve your posture, strengthen your back, improve flexibility and help you lose weight (which may be contributing to back pain). For older adults with osteoporosis, exercises for improving muscle strength, balance and posture are important for preventing falls and reducing the risk of spinal fracture. You may need to avoid certain forms of exercise if you are recovering from a back injury or compression fracture of the spine. Always seek the advice of your doctor or physiotherapist before starting a new exercise program or re-commencing exercise after a spinal fracture or back injury.
2. MAINTAIN A HEALTHY WEIGHT. Being overweight puts added pressure on your spine and lower back.
* If an object is too heavy or awkward, ask for help. a trolley or basket on wheels * Use for carrying heavier items. your feet apart (about shoulder width) to give * Spread you a wide base of support before lifting the object. close to the object you are lifting, keeping your * Stand back as straight as possible. bending over with straight legs and a curved * Avoid spine – bend at your knees and hips, not at your waist.
* Lift using your leg muscles. your stomach muscles as you lift the object * Tighten or lower it down. you stand up with the object, avoid bending * As forward at the waist. the object as close to your body as you can * Hold when lifting and carrying it. bend and twist at the same time when reaching * Never for or lifting an object up.
Smoking is a known risk factor for developing osteoporosis later in life.
Keep in mind that back pain is a uniquely personal experience with many underlying causes. Always seek the advice of your GP, who can assess your symptoms, recommend treatment and refer you to other medical and health professionals for further advice and management.
4. B E AWARE OF BAD POSTURE.
A date for your diary!
Good posture is important for avoiding lower back problems. How you stand, sit and lift objects will have an effect on your spine health.
Managing back pain and caring for your back A one hour webinar (online seminar) presented by physiotherapist, Sally Castell.
5. LEARNING HOW TO LIFT AND BEND CORRECTLY FORMS A LARGE PART OF PREVENTING BACK STRAIN AND INJURY.
Wednesday 18 September, 2013, 11.30am – 12.30pm.
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Avoiding twisting or bending forward from the waist while lifting or carrying objects is especially important for people with osteoporosis and carers who are performing physically demanding tasks. Consider the following safe lifting guidelines:
For details or to register, contact Alex by email at ajaksetic@arthritisnsw.org.au or 1800 011 041. References Arthritis Australia. Back pain [fact sheet], 2010. Available from Arthritis NSW. Reviewed 2010. Available from Arthritis NSW: www. arthritisnsw.org.au Osteoporosis Australia. What you need to know about osteoporosis: Consumer guide. Sydney: Osteoporosis Australia, 2012.
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OSTEOPOROSIS
AN UPDATE ON
osteoporosis
Shelley Evans is the Chief Executive Officer of Osteoporosis Australia. Shelley recently took some time out of her busy schedule to answer some commonly asked questions about osteoporosis, including current highlights and future initiatives of Osteoporosis Australia.
WHAT IS OSTEOPOROSIS? Osteoporosis is where bones become brittle and can fracture more easily than normal bone. Even a minor bump or fall can potentially cause a fracture. These types of fractures are known as ‘minimal trauma’ fractures because can they happen from such a minor incident.
WHAT DO YOU ESTIMATE TO BE THE NUMBER OF PEOPLE IN AUSTRALIA WITH OSTEOPOROSIS? Over one million people have osteoporosis in Australia and a further 6.3 million have low bone density, which can be a possible precursor to osteoporosis.
CAN YOU PLEASE EXPLAIN THE ROLE OF OSTEOPOROSIS AUSTRALIA? Osteoporosis Australia is the peak consumer organisation for people with osteoporosis. We aim to raise awareness about the disease and educate the community and health professionals about prevention. We also lobby government to improve access to the diagnosis and treatment of osteoporosis.
WHAT ARE THE MAIN STRATEGIES THAT OSTEOPOROSIS AUSTRALIA IS CURRENTLY INVOLVED IN TO IMPROVE THE TREATMENT AND MANAGEMENT OF OSTEOPOROSIS? What is most important is education and awareness about risk factors and prevention. We have an opportunity to improve bone health in Australia. In response, Osteoporosis Australia has released a consumer information guide, which covers all the main topics important for bone health – calcium, vitamin D, exercise, medicine and falls prevention. We have also produced new information for GPs and we run special seminars at large national GP meetings.
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We are currently arguing for greater government support for people with osteoporosis, for example, we would like to see the introduction of ‘Re-Fracture Prevention Services’, where a dedicated person would check patients who are in hospital with a fracture to ensure they are investigated for osteoporosis. All these things can result in positive change. We also work closely with our medical committee to keep ahead of new advancements in treatment and prevention”.
HOW CAN WE IMPROVE THE EARLY DIAGNOSIS OF OSTEOPOROSIS? Osteoporosis Australia recently commenced a campaign called How Dense Are You? The campaign encourages anyone over 50 with specific risk factors for osteoporosis to talk to their doctor. We are encouraging people to ask friends and family this question and to visit a special website that has been set up by Osteoporosis Australia: www.HowDenseAreYou.org.au. If people have risk factors and have a bone density scan, improvements in early diagnosis are possible. This means that poorer bone health is properly managed before it advances or results in fractures.
WHAT IS THE CURRENT POSITION IN TERMS OF CALCIUM SUPPLEMENTS AND VITAMIN D? Calcium and vitamin D are two of the three key elements of good bone health – exercise is the third. Osteoporosis Australia always recommends that people get their calcium intake through their diet and their vitamin D from limited sun exposure. However, when this is not possible, a supplement may be required. In terms of calcium, Osteoporosis Australia continues to recommend a limited dose of 500-600 mg of calcium in people who do reach the recommended level through their diet. For vitamin D, it depends on your vitamin D level so your doctor would determine an appropriate level of supplement. We have information on our website explaining all about calcium and vitamin D. Simply visit www.osteoporosis.org.au
ARTHRITIS MATTERS / AUTUMN 2013
WHAT TYPE OF EXERCISE IS BEST WHAT RESOURCES ARE AVAILABLE FOR PEOPLE WITH OSTEOPOROSIS? FOR HEALTH PROFESSIONALS TO INCREASE AWARENESS, Exercise is important for bone health at all stages of life DIAGNOSIS AND TREATMENT OF and we know particular types of exercise are better for OSTEOPOROSIS? bones. For people with osteoporosis, the focus of exercise is to slow bone loss and increase (or maintain) muscle mass and strength. We encourage participation in a supervised (and varied) exercise program that includes weight bearing exercise and progressive resistance training, as well as challenging balance activities at least three times per week.
WHAT DO YOU SEE AS THE MAIN ROLE FOR GPS IN IMPROVING OSTEOPOROSIS DIAGNOSIS AND MANAGEMENT? GPs play a critical role in managing bone health because they can investigate their patients that have certain risk factors for osteoporosis (which may include other diseases) to ensure they have a ‘bone check up’. We also believe that patients can play an active role in working with doctors by informing them of any risk factors they think they may have. For example, a family history of osteoporosis is a main risk factor, or having a fracture from a minor fall could be a sign. Discussing these types of things with your doctor definitely helps.
Health professionals also play a role in identifying people at high risk of osteoporosis and osteoporotic fractures. Osteoporosis Australia has produced a medical guide called What You Need to Know About Osteoporosis to assist GPs and other health professionals in the identification of risk factors, early diagnosis and effective prevention and treatment of osteoporosis.
WHAT ACTIVITIES OR KEY INITIATIVES WILL OSTEOPOROSIS AUSTRALIA FOCUS ON IN 2013? Osteoporosis Australia has just launched new guidelines in the Medical Journal of Australia that makes recommendations for calcium, vitamin D and exercise for all stages of life. It will help set the agenda for bone health in Australia and stresses that a combination of these three factors is vital for healthy bones. We will continue to build government awareness about the seriousness of this disease. We also hope to extend our How Dense Are you? campaign throughout 2013, so please help us by asking your friends the question!
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19
REVIEW
New Model of Care for JIA: INTERVIEW WITH DR DAVINDER SINGH GREWAL
We understand you are part of the NSW Musculoskeletal Network managed by the Agency for Clinical Innovation, with Arthritis NSW Chief Executive, Karen Filocamo – can you tell us what the network is doing to improve services for children with Juvenile Idiopathic Arthritis (JIA)? Over the past three years, the NSW Musculoskeletal Network has been trying to work out what the deficiencies in services for children with rheumatic disease, predominantly JIA, are within NSW and come up with a cohesive state-wide plan for providing a better coordinated and more comprehensive service. The main aim has been to identify the problems and come up with a plan for dealing with those problems. We’ve done quite an extensive consultation with patients and families affected by childhood arthritis to help guide our decision making about what a new model of care should be. We’ve had input from international experts who did an external review of the model we developed, in order to make a more robust system that will hopefully help families deal with arthritis. The model itself is really aimed at providing families with quick and easy access to experts in managing childhood arthritis and avoiding delays in diagnosis or having to visit multiple doctors before a diagnosis is made. It’s also aimed at easy access to skilled allied health professionals – like physiotherapists and occupational therapists - and other medical experts including psychologists.
How do services for children with rheumatic diseases in NSW compare with services in other states? Despite the fact that NSW is the most populous state, we really fail to achieve quite modest benchmarks provided by the other states in terms of the availability of paediatric rheumatologists within the hospital system and also allied health professionals that children with arthritis need to access. If you look in a wider context and compare the availability of those services to countries we compare our health system to such as Canada, US or England, we fall well behind those benchmarks also.
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At this stage, we are not succeeding in providing the type of service that children should receive. In saying that, most children in NSW do receive good care, but it’s often a bit disjointed and not well coordinated, resulting in families having far more disruption than what otherwise might be necessary.
What needs to happen to improve health services for children with JIA in NSW? It always comes down to a resource issue. We do need more resources, but in an economic climate where there are competing interests and times are tough within NSW Health, we need to come up with innovative ways to provide services. One of the most useful parts of that is to coordinate the services through a nurse or a dedicated coordinator; We need someone to direct people to appropriate services, to coordinate appointments to avoid multiple visits and just generally provide support for patients and families so when they’re feeling a bit lost and don’t know where to turn for advice or assistance, they have that point of contact. It would save a lot of time, effort and health resources if people are able to access the right person immediately. We also need more allied health professionals with advanced skills in treating JIA. They need to be accessible to families so it’s not difficult to find them or expensive to access them.
What would be an example of a good patient journey for a child in terms of being diagnosed with JIA? I think that would be a child who develops the symptoms of morning stiffness, joint pain and swelling, who goes to their GP. Their GP would have had training about childhood arthritis so they didn’t think it was just growing pains or some other condition that would go away. Based on examining the child and talking to the family, they would feel confident in suspecting the diagnosis. They would have a referral pathway so they were aware of what services were available and were able to direct the child to those services without delay, so they’re not seen by many related specialists, like an orthopaedic surgeon, before getting to the paediatric rheumatologist. When the family comes to the paediatric rheumatologist, the consultation should not be rushed so they’re not left with unanswered questions. They should be given the opportunity to obtain education about the disease and its treatment. If they need to see an allied health professional,
ARTHRITIS MATTERS / AUTUMN 2013
it can be organised at the time of that consultation or soon after, so there’s no delay in accessing that care. If the patient does need a joint injection, there’s not a prolonged wait until that can be done, which is often the case. It should be available in a relatively short period of time to relieve the patient’s symptoms and stop the inflammation. As many families are aware, with arthritis there are good periods and other periods where the disease is active and needs an acceleration of treatment or additional treatment. At this time, there should not be prolonged delays getting help again. As kids grow up and become adolescents, there should be a coordinated system so that the child has a good understanding of their disease and treatment. They should start to take control, so they can make a transition into adult services, which half the kids with JIA will need. This is a process which starts at the first symptom and ends at the time that the child grows into an adult and moves on to adult care and the aim is to provide coordinated care throughout that entire period.
What do you think in reality, currently happens for these children in NSW? I can tell you with some authority that the research conducted has identified often very prolonged delays in diagnosis. General Practitioners, emergency physicians and others who often see these children at the onset of their symptoms of pain, swelling and so on won’t always recognise the disease. These kids are often sent home with some panadol and symptoms just get worse over time. They eventually see
an orthopaedic surgeon or someone who, again, often won’t consider the diagnosis initially. They think about doing other tests - MRI scans and even operations - before it becomes clear that this isn’t an infection, or a fracture or growing pains, but it’s actually inflammatory arthritis. Those issues can be overcome with added education for those health professionals. There’s also often a prolonged wait for an appointment with a paediatric rheumatologist before you can get some sort of definitive treatment or medication.
of their physical health, but also that the unpleasant experience of having arthritis would be lessened because the family would feel supported and feel they had some control over the disease because they had access to the right help when they needed it.
Why is multidisciplinary care so important? With JIA, like so many other chronic diseases of childhood, just seeing the doctor is often not enough. There are the physical needs of physiotherapy and occupational therapy, but also psychological needs, as it’s not an easy disease for children and their family to deal with. As I mentioned earlier, the health outcomes and patient experience are improved when you have access to all of these services.
We realise funding a new Model of Care (MOC) for children with rheumatic diseases in NSW would be expensive, but what would be the outcomes for children As many families would know, if this new model was managing a household of children, implemented? The new MOC is all about coordinated care. There is some evidence from overseas that shows when you do implement this sort of coordinated care that patient outcomes are improved, because they see the right expert in a timely fashion, which avoids some of the complications of arthritis such as cartilage loss and early osteoarthritis. But almost as importantly, the satisfaction of the patients and families is significantly improved. They don’t feel like they’re being rushed from one place to another to access care. They know where it’s centred and they know who to contact. There are a lot of very positive patient experiences that come out of coordinated models of care. We would hope that children would have better health outcomes in terms
one of whom has arthritis, can impact their ability to have quality time together or participate in leisure or sporting activities because they’re often at doctor’s appointments. If we are able to coordinate things better so that time pressure is removed, most families would agree it would greatly benefit them.
Have parents of children with JIA been consulted in development of the new MOC? How did this happen? Yes. At first, Arthritis NSW collected ‘patient journeys’ which were people’s stories of their child’s symptoms and the process of getting a definitive diagnosis. Things like delays in diagnosis, uncertainty and feeling unsupported were major themes. We also conducted a scientific study which
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REVIEW interviewed a large number of families and children, which confirmed those themes. We’ve used that information very specifically to direct the development of this model of care because, in the end, our aim is to develop a structure that supports families and provides for their needs, not for the doctors’ needs or physiotherapists’ or hospitals’ needs, but specifically for the patients and their families.
Camp Footloose
How can parents help to get this new MOC implemented in the NSW Health system?
Myuna Bay Sport and Recreation Centre from 23 – 27 September.
The model of care is now complete and has been sent out for consultation amongst the organisations that will hopefully be implementing it. Although we have what we think is an excellent plan for providing services, funding of this plan is going to be our biggest challenge.
Places are very limited so please ensure you register and pay your deposit by Friday, 3 May.
What families can do is advocate strongly for their children, which is what most families do. But rather than advocate on an individual basis, just for their child, I think it’s time for parents to start thinking about advocating for the service for all children with arthritis. Supporting Arthritis NSW in its efforts to publicise the model of care and have it funded is probably the best approach families can take to try and improve the situation. It’s only with that type of combined pressure and support that we’ll see any great improvement.
A letter of invitation will be sent to all current family members of Arthritis NSW shortly with further information but if you are interested in registering now, please contact Jenny Ly on 1800 011 041.
UPDATE Even though Camp Footloose is still months away, planning has begun in earnest for this year’s camp. The 2013 camp will be held at
Camp Footloose is being supported by William’s Wish this year and as such the cost will be $100 per child.
If you could have a conversation with the Minister for Health about this new MOC, what would you say to her? We hope to have the opportunity to speak to the minister. At that meeting, my plan will be to stress to her the significant impact that JIA can have on young people and their families. I’d mention it’s not that just the elderly that get arthritis. Inflammatory arthritis can affect children also and it can have a profound effect on them and their families. It’s only when the administrators recognise that as an issue that they’ll be willing to allocate resources to improve the services available for this patient group. I think it’s important for the minister to understand that any joint damage, impacts on a young person will affect them for their entire life. It can affect health costs in the future; but more importantly, on an individual basis, it can affect a young person’s ability to participate in all the activities they wish to participate in, for them to perform well at school and through higher education and develop a vocation they and their families would want them to develop. I think that’s our strongest argument for having this model of care funded.
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PUZZLES sudoko (ANSWERS PG 34)
MEMBERS
ARTHRITIS MATTERS / AUTUMN 2013
John Bagala talks about life with his wife, Shanneen, who has had arthritis since before they met. About five years ago, John and Shanneen met. “It’s a funny story – we met in a nightclub in the city,” says John, who is now 42 years old. “When I saw her, I knew there was something different about this girl.” He was right, there was something different. Shanneen had arthritis. She was diagnosed a few years earlier and for John, this was quite a surprise. “I was sad hearing she lived with this condition at such a young age. Up until meeting her, I didn’t know that arthritis really affected younger people,” says John. “I really wasn’t aware how prevalent arthritis was.” Shanneen, now 33 years old, has arthritis that affects various parts of her body, including her fingers, rib cage, knees, feet, toes and elbows. “She tries to keep moving,” says John. “She is still able to do many things, but obviously with this condition you learn to manage it and learn to adapt.” John says that Shanneen’s arthritis impacts various aspects of her life, for example, her work. John explains that she works casually, three days a week, as she uses her fingers a lot when she’s typing. “They’ve asked her a few times to switch to permanent full time but she says she doesn’t want to let them down,” he says. Shanneen’s condition greatly impacts her life and has helped put John’s life into perspective. “Until you meet someone who is not as able-bodied as yourself, you don’t realise how lucky you are.” Together they have a good partnership and he helps care for her in many ways. “The most important thing is to make her a nice hot cup of tea,” he says, “and to always make sure
she doesn’t do too much. She’s always wanting to cook and tidy, but she needs to just sit down and rest for a while.” John says that Shanneen does 95% of the cooking. “She’s a really good cook and she loves doing it, but I’ll chop or dice the veggies, carry the pots and pans, and just do the fiddly things to take the load off her fingers.” It’s when she’s having a bad day that John really becomes the carer. “Whenever she’s really tired or if she’s in pain, I’ll set her up on the bed and I’ll support her under the small of her neck,” he explains. “I put pillows under her calves to elevate the knees, which also straightens out her lower back.” “I do it because I love her, and I know she’ll feel better. Sometimes she gets so exhausted that she can barely move. I try and take the load off her joints and ease the pressure.” They have come up with innovative ways to keep Shanneen moving, which John says is the best thing you can do. “Last Christmas, we set up a pool on our enclosed verandah. It’s 12ft long by 6ft wide and when we come home, we can jump in there for some gentle exercise. You step in and feel the pressure fade away.” John says that while there are many challenges they face on a daily basis, you just need to adjust and find ways to manage and keep moving. “We like to walk our dogs together and we own a couple of push bikes. Depending on how she’s
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MEMBERS feeling, we might go for a little ride together.” But of course there are some days you can’t, explains John. “When she’s in pain, she takes her medications and might try and relax in the bath, and I’ll make her a cup of tea – Just little things like that.” Many years ago, John worked as a wardsman for a rehabilitation centre, so he even has a little professional caring experience. “I learned a lot working there and it was a very humbling experience. I used to think I had problems, but being there and assisting the nurses really put things into perspective. These days, as a full time fabricator, he works from 6am
until 3.30pm most days, which helps with their lifestyle. “When I come home before Shanneen, I can do some tidying up. When this happens, she’ll walk in and have the biggest smile on her face. Seeing that makes it all worthwhile.” John explains that as a carer, you need to try and be understanding. “Treat others how you would like to be treated,” he says. Their situation is unique, however as John has epilepsy, which means that Shanneen cares for him in return. “She does for me what I try and do for her,” says John. “We both have a condition that needs special care, so we watch each other, look after each other and have a mutual understanding.”
Russell Moor talks about what life is like caring for his wife with rheumatoid arthritis. 80 year old Russell Moor lives in Orange with his wife, Kerrel. She has had rheumatoid arthritis since she was a child, but in recent years it has really started to affect her. Kerrel’s arthritis affects many parts of her body. Russell explains she has had surgery on her shoulders, back, toes and feet, but she’s always managed to stay on top of her condition. “Kerrel’s a trained nurse,” says Russell. “She has been aware of her condition for a long time and has always had good professional help.” After living in Sydney and Wiseman’s Ferry, they moved to Orange 15 years ago. “We wanted to get back to the country, and we have family here,” Russell explains. “Another consideration was that Orange has a good hospital and very good medical care.” Russell says Kerrel’s condition didn’t affect him a lot until they moved to Orange. “I suppose it’s only in the last 15 years that I’ve become the carer,” says Russell, “but I’ve never really seen myself
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as a carer. It’s a partnership. What she can’t do, I do.” Their biggest changes were their plans for retirement. “We were going to do all those things that retired people do, but we quickly realised that wasn’t going to happen,” says Russell. “We caravanned for a while… but couldn’t go on with that, and we couldn’t bushwalk. We couldn’t do the things we loved doing, so we had to settle down and change our lives a little.” Russell says that the biggest challenge is the uncertainty of arthritis. “It doesn’t give you warnings when things are going to go wrong. You can be right in the middle of planning something beautifully – and suddenly, more surgery is required and more recovery time needed. And each time there is a recovery, there is a little bit less you can do than last time.”
ARTHRITIS MATTERS / AUTUMN 2013
Even so, they have learned to manage their day to day lives and everyday tasks. “We’ve broken our lives up into the things Kerrel can do and Kerrel can’t do,” Russell explains. “I do everything outside – she does the watering. Inside, she’s always loved washing so she does that but I’ll hang it out, if necessary. I normally get the evening meal prepared, I make the beds and last year, I did the housework, but now we have someone that comes to help.” They are fortunate to have family close by, many of whom are deeply involved in the medical system, which Russell says is a big help. “We can get good advice any time we need it,” he says. However, Russell says if he had to offer one piece of advice for carers it would be to go along to the local meetings held by Arthritis NSW. “I didn’t know anything about arthritis 15 years ago. I then got involved in the local meetings here and was appointed as Voluntary Field Officer. That was an interest I took up because of my involvement with Kerrel and with arthritis.” Russell is still an active part of the Orange Support Group, and finds it highly beneficial.
Anne Ryan talks about taking care of little Ella and her JIA
With the help of the Independent Living Centre, Russell says they made some changes to their home and are well equipped to manage Kerrel’s condition. “When we retired knowing what was ahead of us, we had our house re-planned by the Independent Living Centre,” he says. “We had ramps put in for when Kerrel has needed a wheelchair, and our kitchen was re-planned so that we can pull the drawers out and put the wheelchair under the bench, if required. We’re all set up for a wheelchair and have a garage full of helpful aids on standby, if we need them.” Over the years, Russell has learned a lot about how to manage arthritis and he says that having a good understanding and knowledge of the condition is invaluable. “I strongly advise anybody who is a carer to become involved with Arthritis NSW,” he says. “An interesting thing I learned about was the prevention of falls and fractures. We’ve gone right through the house and made sure that no one’s going to fall over (we hope!)” Russell says, “With arthritis, like many things in life, if you have it, you’ve got to accept it. Work with it, not against it.”
Being a mother of two, working and having the responsibility of a child with Polyarticular JIA is no easy feat. Ella was 5 years old when she was diagnosed, her first reaction was “how do I stop the pain for Ella and make it go away!” It was all of a shock at the beginning and Anne went into damage control. The lives of Ella and her family totally changed but Anne was lucky to have her parents help out as well as Ella’s older brother, Alex. “Ella’s life changed completely, she couldn’t go to school, couldn’t run, jump swim or any activities she should be doing, she was tired all the time as she was fighting the pain.” However, Anne knew life had to go on and having help has made a big difference, “My mother also cares for Ella when I am at work. I know how lucky I am to be in this situation to have the extra help.” Anne says that every day they face different challenges, “The main challenge with arthritis for Ella is that it is sporadic. It is often worse in the morning – and the level of care she has increases as her pain level gets higher and her joint movement is limited. Often, as the day progresses, she needs less help, but if she has a flare she may need around the clock assistance.” Ella is very lucky to have a loving family and also a very understanding school. “The school has always gone above and beyond to help Ella. We have such a great network of friends, family, doctors and join other networks for information, such as Arthritis NSW or facebook, all this has helped Ella enormously.”
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WILLIAM’S WALK
A mother’s fight for kids with arthritis A MOVING INTERVIEW WITH LAUREN HARRIS
W
illiam was diagnosed at 16 months with Sysytemic Onset Juvenille Idiopathic Arthritis and his life was taken at 6 yrs old by infection. Lauren and David Harris have been the force behind William’s Wish, a foundation which she set up in conjunction with Arthritis NSW to remember William Harris as well as spreading the word that kids get arthritis. Lauren gives our readers an insight, two years on, about what she wants to achieve in 2013 from William’s Walk. Can you tell us about William and what happened? William was wonderful and brutally honest. Often times I was embarrassed by his bluntness! That was his character. I admired that. More people should be like that. He was very honest about his disease and the way it made him feel. He could also have a rather feisty nature and God help you if you were caught in the cross fire. It was usually over a milkshake and my ability to not make it as fast as he required it! I nicknamed him Wilma, I was the only one who got away with it. But he is fondly remembered by me as Wilma.
It’s been two years since William passed away. What do you remember best about him? I remember his boldness. It’s still what people remember most about him. William had the ability to make you feel like you where the best thing on earth; or his ability to go to war with you. He wasn’t afraid of an argument and rarely backed down. He had this unbelievable knack that whomever he met, he left this lasting impression as “the bossy one” but they also loved him at first sight. I personally loved everything, I even loved his arguing. Our home is missing his loudness.
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As a mother how has it been since then? Honestly? It’s torture. Every day. There is no relief. I deal with my grief, my husband’s and my 3 other children’s. Nothing is normal and never will be again. There is a big empty space in my home, a space he filled. My kids now know the very worst pain. My husband and I try to do the best we can. You can’t explain the emptiness, the guilt and even if I tried, it still wouldn’t explain it. It feels like failure, I failed as a mother. That’s exceptionally hard to live with. Grief will never go away. I will grieve until the day I die and so will David and the kids. Sometimes, I have those days when I put on the radio and cry all day long. I don’t try to fight it, because how can I? How do you stop tears falling when you’re missing one of your kids?
How do you feel about the success of Williams Walk? Excited! I know he wanted to change the world and I also know how happy he would be. So I feel very humbled by the support we have. People embraced us and that truly heals a little bit of your heart.
There have been many people fundraising for Williams Wish. How does that make you feel? I have seen more generosity in the last 22 months than I have before in my life. I feel like I have a little man who left a massive imprint in people’s hearts. People want to help and, looking at his beautiful face, how could you not? But I do feel very blessed. There are some unbelievably kind people in this world.
ARTHRITIS MATTERS / AUTUMN 2013
*
Understanding Webinars
A webinar (which is short for web-based seminar) is a seminar conducted over the Internet. Think of a webinar as a way to watch and listen to a seminar from your computer. On your computer screen, you will see the presenter, as well as their presentation slides. You will not be able to hear or see the other attendees, nor they you, so you can freely get up and move around and do whatever you need to, to be comfortable while watching the seminar.
Why should people be a part of Williams Walk? Because you make a big difference to a little person’s life and also because when his mother see’s how much support she has she can’t help but be very proud of him. Sadly, William’s life is over but William’s Wish’s chapter has just begun.
What do you want to achieve in this year’s walk? If I could achieve anything it would be to know one more person knows that kids get arthritis too.
How can people help in this walk? Log on to Facebook and search for Williams Wish. ‘Like’ and ‘Share’ his page and let the word spread. Advertise our walk. If you tell someone and they tell someone else then very soon William’s Walk will be an event with thousands of people!
Register and fundraise for William’s Walk. Saturday 27th April 2013 at Bondi Beach (walk starts @ 11am) and Sunday 28th April at the International Regatta Centre, Penrith (fun run starts @11.15am and walk starts @ 12pm). Take part by visiting www.williamswalk.org.au or 1800 011 041.
We understand that trying out new technology can be quite daunting, especially if you do not use a computer often. Arthritis NSW still provides face-to-face community seminars but, because it’s difficult for us to travel to all parts of NSW during the year, we use webinars as a way to provide education to the wider community. It may also be difficult for some arthritis patients to attend some seminars due to physical disabilities or transportation limitations. To view a webinar, you will need the Internet, a computer, speakers (which should be part of your computer) and an email address. Once you register for a webinar, you will receive an email with the instructions so you can sign in at the scheduled time. Most computers already have all the software you need to participate, so you shouldn’t have to worry about installing any new software. It will be as simple as checking your email. Arthritis NSW has successfully run several webinars. Presenters of past Arthritis NSW webinars have included orthopaedic surgeons, rheumatologists and physiotherapists. Presenters visit the Arthritis NSW office and the health promotion team facilitates delivery of their presentations. Before and during the seminar a friendly member of our team is available to answer any questions and to help solve any issues you may have with viewing the presentation. We encourage you to keep in mind our upcoming education webinars which are advertised in the events section on Page 3 of the magazine. We realise that some people may be busy during these scheduled times and an online recording may become available after the event. If you are interested in participating, but these dates or times do not suit you, please give our office a call on 1800 011 041 to register your interest in accessing the webinar recordings.
27
MEMBERS NEWS
Community Fundraising: Update Four very fit ladies riding for Arthritis NSW Marissa Callaghan, Rowena Macrae, Sally Wallace and Jane Atkinson are known as the “Four Fit Ladies”. The ladies have decided to raise funds for Arthritis NSW’s ‘Cycle for Disability’ campaign by riding a push bike from Vietnam to Cambodia in November 2013. You can also ride for Arthritis NSW in November 2013 by visiting www.inspiredadventures.com.au and downloading the program. The ride has been specifically designed for people with arthritis. You can also donate to the Four Fit Ladies by visiting their page www.vietnamntocambodia. gofundraise.com.au/page/AtkinsonJ
Dorset raises $17,000 through the Coles Classic
Dorset Sutton who has osteoarthritis and is in his 60’s, has raised over $17,000 through his participation in the Coles Classic Ocean Swim on Saturday 2 February. Congratulations to him for his fantastic effort and raising these funds for Arthritis NSW.
LEON GOLTSMAN RIDES FROM SYDNEY TO MELBOURNE RAISING ARTHRITIS AWARENESS
Leon is a brave man! In early January, he rode over 1,100 kms in 11 days to raise awareness about arthritis all along the south coast of NSW and Victoria. We thank Leon for his fine effort and also raising funds for Arthritis NSW.
Garry Moir raises $32,000 for William’s Wish
*
Garry with his Yellow Hat fundraiser raffle has raised an astonishing $32,000 for William’s Wish and kids with arthritis. We thank everyone who took part in his fundraiser for raising money for kids with arthritis.
DONNA AND RENEE CYCLE FOR 24 HOURS TO RAISE MONEY FOR ARTHRITIS NSW
onna and Renee recently joined forces to raise money D for their Vietnam to Cambodia ride and participated in a 24 hour cycle class. So far they have raised $2,500 for the organisation. A big thank you goes to all the participants at Jetts gym in St Kilda for making a difference to arthritis.
Win
BEFORE THE 26TH APRIL It’s not too late to win $5,000 and be part of the Arthritis NSW 2013 raffle. Tickets are $5 each, 5 tickets for $20 or 14 tickets for $50. Enter by visiting arthritisnsw.org.au or contact us on 1800 011 041.
City to Surf 2013 Interested in running for Arthritis NSW in the City to Surf in August this year? Last year, $16,000 was raised. In 2013, our goal is to raise more than $20,000. For further information about the City to Surf gold pass registration, visit our website @ www.arthritisnsw.org.au
LOCAL
Out of Joint NENA DOYLE
COMMUNITY LIAISON OFFICER
The start of a new year is the start of fresh beginnings. Welcome back to all our support groups and branches. Arthritis NSW has 43 in total around the state, all manned by super, wonderful volunteers who are always willing to welcome and introduce you to their members. The latest support group to be formed is at Castle Hill Library. This group meets on the third Friday of each month and local members are encouraged to attend. Two free arthritis information sessions were held on 4 and 5 February 2013 with the intention of starting a new support group in Armidale. For more information on both these support groups please contact Nena on 1800 011 041. The regional meetings have commenced and these are open to all members. Dates, times and venues are displayed on the right. These meetings are catered with morning tea and lunch, so if you would like to attend please let your group convener know or executive team member ASAP. Members who do not belong to a support group or branch are also encouraged to attend. Please call Nena 02 9857 3300 or email ndoyle@arthritisnsw.org.au.
ARTHRITIS MATTERS / AUTUMN 2013
BE A HERO AND RAISE MONEY FOR ARTHRITIS NSW
Associate Professor Ben Marosszeky has been awarded an OAM for his rehabilitation arthritis work.
Looking into fundraising for Arthritis NSW? Organising your own event, is a fun and rewarding way for schools, clubs, workplaces and individuals to support and raise money for Arthritis NSW. As we receive minimal government funding, we rely on the generous support of the community in NSW to help us improve the quality of life for all people who have arthritis, regardless of age.
Arthritis NSW congratulates Associate Professor Ben Marosszeky on his Order of Australia medal for his ‘significant service to rehabilitation medicine and contributions to people with arthritis’.
Whether you are looking to hold a dinner party for your friends, a sporting match for your local community or participate in anything that ends in -thon, we can provide you with some hints and tips to make your fundraiser a success. To help you with your fundraising, you can choose to have your own online fundraising page, which you can share with your family, friends and colleagues via email, facebook or twitter. They can then donate directly to your page.
Associate Professor Marosszeky was on the Arthritis NSW Board for 35 years until he retired in December 2012. He was the head of the Rehabilitation Unit at Westmead for almost as long, retiring from the unit around the same time. Associate Professor Marosszeky has a fascinating personal history, having escaped from Hungary during the 1956 revolution. He still has vivid memories of growing up under Communist control.
You may already know what you would like to do, but in case you don’t, we have lots of ideas to get you started. Visit our community fundraising portal at www.arthritisnsw.gofundraise.com.au or call 1800 011 041.
REGIONAL MEETING DATES: Central West: 5 March, Bathurst RSL @ 10am South Coast: 7 March, Warilla Bowls Club @ 10am City: 27 March, Ryde-Eastwood Leagues Club @ 10am Riverina: 11 April, Commercial Club Albury @ 10am
Far North Coast: 17 April, South Grafton Ex-Services Club @ 10am Mid North Coast: 2 May, Taree RSL @ 10am Central Coast: 8 May, Woy Woy Bowling Club @ 10am Upper Hunter: 15 May, East Maitland Leisure & Golf Club @ 10am 29
LOCAL
LOCAL HAPPENINGS Albury/Wodonga In December 2012 we held a celebratory morning tea for our long time member, treasurer and friend, Inge Husz, who received her Honorary Life membership award from chairperson Fran Schneider, on behalf of Arthritis NSW. Inge’s award has been well earned through her commitment to and positive ambassadorship of Arthritis NSW. 2013 is off to a hectic start. New warm water exercise leader training was held on 29 January. We thank Arthritis NSW staff for making this possible. Recent health challenges experienced by several long term leaders makes this more vital for us. on 3 March 2013 our branch will be joined by the A/W Chronic Pain group in promoting our organizations to the local community at a garden party hosted by Albury Lions Club. Some 80 organisations have registered to participate. The NSW Governor Marie Bashir will be guest of honour at this event and at a cocktail party in the evening.
each month, mostly about arthritis or other medically related topics, or topics of general interest. We also run regular warm water classes at the hydrotherapy pool at the hospital. These are proving very popular and have increased from two a week to six, and are run by one of our three instructors – Chris, Cathy or Adrienne. Chris also conducts two Tai Chi classes a week. We undertake fundraising events as often as we can, such as raffles, sausage sizzles outside a local supermarket, a street stall for arthritis week, and a collection box at our meetings. We generally give what we raise towards the arthritis children’s camps. We send a newsletter twice a year to Arthritis NSW members in the area to tell them of activities for the forthcoming six months. We are happy to report that we received a cheque for $500 from Bendigo Bank. The money will go towards a forum on Osteoporosis.
Next Albury/Wodonga Pool Group meeting, Monday 8 April 2013, Masonic Hall, Gulpha Street North Albury 10am.
Eastern Suburbs Our first meeting for 2013 was on Wednesday 27 February and our speaker was Kimberly Steward O`Sullivan from Waverley Library who talked about how council talked to residents - then and now. Linda Nash and Inge Husz celebrating their Life Membership Award
Blue Mountains The branch has operated for over six years and meets at the Education Unit at Blue Mountains Hospital, Katoomba. We have a guest speaker
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The speaker for Wednesday 27 March will be Mr. John Morrison OAM who will talk about the history of the Lugar Brae Players, who are a theatrical group in the Eastern Suburbs and have been putting on musicals at Bondi Junction for the last 50 years. The speaker for Wednesday 24
April will be Eloise Milthorpe from Arthritis NSW. Eloise will give a talk and powerpoint presentation about falls prevention. The speaker for Wednesday 29 May will be Nena Doyle from Arthritis NSW who will talk and answer questions about Arthritis NSW.
Holroyd Our assistant chairperson Michelle Kirchner was presented with Honorary Life Membership at the AGM/BAM in November. Michelle also celebrated her 70th Birthday on January 1. Congratulations from all your friends at Holroyd branch. Kath Lee, founding member and past chairperson name was put on Arthritis NSW Honour Board. The branch had an auction of odds and ends which raised $250. Well done! And our Christmas hamper raffle was won by Marge Evans.
Lithgow Last November our branch co-hosted the Community Forum on health with the Nepean-Blue Mountains Medicare Local and Nepean Blue Mountains Local Health District joint consumer committee. This was the first time that health consumers had been able to meet in Lithgow to discuss health issues and have a voice on services needed for the district. It had been a very exciting and busy year for two members planning the forum along with a hospital representative. Many of the members attended the forum in support. Christmas lunch was great with 25 members present. Our raffle (kindly donated by Janice Perry and Swee Choo) of a handbag and holder, was won by member Alma Magus. Members were thrilled to be invited to Jo (our instructor) and Mick’s wedding on 12/12/12. The marriage celebrant
ARTHRITIS MATTERS / AUTUMN 2013
was Nena and we all loved the informal ceremony at their home and sharing lunch with them. It was a wonderful privilege to share such a special day!
Long Jetty Congratulations to Beryl Evans and Linda Nash who were awarded Life Membership at the AGM in November. Beryl was our former president and did many years of dedicated service for the branch. She is now in her nineties and was unable to attend the meeting in person, but we were delighted to be able to present her certificate at our Christmas party. We look forward to a busy and interesting 2013.
Macarthur Macarthur Support Group finished 2012 with quite a bash! We had agreed to have a Christmas picnic in a local park, however the weather was wild; cold and blowing a gale. Nevertheless those of us who attended had an exhilarating experience. The cakes made by one of our members were amazing and the raffle raised just that little bit more to add to our total for the year. A visit to our November meeting by a dietician and exercise physiologist had us all up and moving around the room with loads of ideas as to how we could modify a range of exercises to suit our individual conditions. 2012 has seen us increase our Tai Chi for Arthritis classes from one to two each week with a combined attendance of around 30 people (The photo shows the Harrington Park class for 2012). Warm water exercise classes have commenced and as a group, we began a short first aid course, conducted by one
of our conveners who is a trained nurse, during each meeting. After a trial change of venue, 2013 will see us back at Campbelltown library for our meetings. It is centrally located and accessible by public transport, with plenty of parking for those who drive. We begin 2013 with six enthusiastic co-conveners to share the load of organising the support group. This year will see sessions on pain management and falls prevention as well as an interesting outing.
Maitland Our branch conducts lovely friendly meetings and anyone wishing to attend will be made most welcome. We are trying to get some good, different guest speakers to present this year. This month’s speaker is a bee keeper, gardener and grows herbs so we should be very healthy. Chairperson, Leila, and secretary, Veronica, met up with Shirley ( our first chairperson) last week and she is coping well although her husband Leon is not well and is in a home. They now live at Wyee. So to all those who have been sick, we wish you a speedy recovery.
Parramatta Parramatta branch has decided to become a support group and hopefully relieve our present office bearers of some of their responsibilities each month. Members will be helping with the organisation of some of our meetings and we hope they will enjoy this extra participation. We will no longer have a trading table, but will have a donation box, which may raise more money with less effort from members who carry goods each month. With membership now being
paid through Arthritis NSW, the Treasurer’s duties have been lessened. Nena Doyle visited us on March 4 to explain the new Australian Laws for Occupational Health and Safety as they relate to our Group. We hope to attract more members this year as age has caught up with some of our longstanding members and we miss their support.
Taree Our Christmas lunch went off with a bang; Bon Bons everywhere! After our December meeting members went down to Nabiac, which is a half hour drive south of Taree, to the Greenhouse café where we enjoyed a meal mostly made from locally grown organic produce. The café also sold handcrafted bracelets and necklaces. There were many beautiful items in there. We enjoyed lots of talk and laughter and a jolly good time was had by all! Thanks to our president, Maria.
Wollongong The Grange Ladies Golf Club benefit day was a huge success. They donated to us $1,350. Our stall raised $894 plus the raffle raised $203. The total raised was $2,447.05. Our sincere thanks to all who donated articles for sale and especially to those who worked on the day. The monthly fruit and vegetable raffle at our meetings are continuing to be very popular and a good fundraiser. Our guest speaker Dr. R. Jaworski’s address on reactive arthritis was very informative and interesting. Marlene Scott, our Vice Chairperson, was the senior volunteer for this area and was a contender for state volunteer of the year on 5 December in Sydney. Sadly, Marlene missed out on the state award. Bunnings has granted permission for us to hold a sausage sizzle next June.
31
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SUPPORT GROUP & BRANCH LISTINGS SUPPORT GROUP Albury/Wodonga* Castle Hill Coffs Harbour*
MEETING DATE Social getherings Warm Water ex. Only 3rd Fri 1st Tues 9.30am Bi-monthly, beg. Feb
ARTHRITIS MATTERS / AUTUMN 2013 LOCATION
CONTACT Fran: 02 6025 4301
Castle Hill Library Community Centre
Nena: 02 9857 3300 Nancy: 02 6652 3315
White House, Prince St Internet only
Joyce: 02 6342 5192 Noreen: 02 43236707 Margaret: 02 6643 3801 Alex: kidswitharthritis@arthritisnsw.org.au Liz: 02 4332 5245
Cowra Gosford Grafton Kids with Arthritis
Warm Water exercise only 3rd Thurs 10am
Long Jetty*
1st Thurs 10am
Lower Clarence* Macarthur Molong Mudgee Newcastle
4th Mon 9.30am 1st Wed 10am 2nd Mon 11am 4th Wed 10am 4th Wed 1pm
Nowra Orange Parkes Parramatta Quirindi Ryde
1st Thurs 10am 1st Mond 12pm, Bi-monthly Last Tues 10am, Bi-monthly 1st Mon 1pm 4th Tues 2pm 4th Thurs 1pm
Karagi Court Community Hall Yakalla Rd, Bateau Bay Com Hlth Centre Maclean H J Daley Library, Cambelltown Bowling Club Eucharenna Rd CWA Hall Market St Mayfield Seniors Centre 102 Hanbury St, Mayfield Shoalhaven Lib. Meeting Room HACC Centre, Lords/March Sts Parkes Hospital Education Centre Room C, Old Council, Admin Building Ingall Centre, Nowlend St, Quirindi Ryde/Eastwood Leagues Club
Scone Turramurra Tamworth Tuggerah Lakes* Woonona/Bulli BRANCHES Blue Mountains Cooma
1st Wed 11am 1st Friday 10am 3rd Tues 5pm 1st Friday 10am 1st Wed 9.30am
Bowling Club Senior Citizens Romms, Gilroy Lane Tamworth Community Centre, Darling St Uniting Church, Summerside St Toukley Bulli Community Centre, 328 Princes Hwy, Bulli
Margaret: 02 4423 4326 Noeline: 02 6361 7629 Fiona: 02 6862 1866 Val: 02 9632 6636 Val: 02 6747 4727 Doris: 02 9817 7470 Email: doris_carrall@tpg.com.au Fred: 02 6545 1701 Elizabeth: 02 9403 1708 Marina: 0403 759 148 Lorraine: 02 4390 2177 June: 02 4283 1450
Katoomba Hospital Education Centre Ex Servicemen’s Club
Adrienne: 02 4787 1124 Marion: 02 6452 1057
Corowa Dubbo Eastern Suburbs Hawksbury Holroyd Kincumber Lismore
3rd Tues 12pm 3rd Mon 11.15 am Bi-monthly, beg. Feb 1st Wed 10.30am 2nd Thurs 2pm Last Wed 10.15am 3rd Tues 10am 4th Wed 10am Last Fri 10am 2nd Tues 10am
Joan: 02 6033 3198 Norma: 02 6882 2506 Susan: 9389 8140 Julienne: 02 4574 1928 Betty: 02 9632 3302 Dorothy: 02 4368 1748 Marie: 02 6628 6692
Lithgow* Maitland District Milton/Ulladulla
3rd Wed 11am 1st Thurs 10am 3rd Wed 10am
Kalianna Social Enterprises Centre, 93 Guy St Masonic Hall Darby Cl Bondi Jt RSL Club Function Room Rozzdi Room, Windsor Library 300 George St Com. Hlth Centre 14 Memorial Ave Merrylands Brentwood Village Cedar Room, Neighbourhood Centre, Carrington St Lithgow Library Main St East Maitland Bowling Club Building 1 Comm Resources Centre, St Vincents St CWA Rooms Cnr Tindale St & Castlereagh St Senior Citizens Henrietta Rose Rm Bowral Uniting Church, Alber St. Taree Rules Club Warilla Bowling Club Wesley Auditorium Community Centre, John Hoare Ct. Uniting Church Hall, Young
Henrietta Rose RM, Bowral Charlestown Multi Purpose Centre
Dianne: 02 4861 4639 Julie: 02 4982 5254
Warilla Womens Health Centre
Barbara: 02 4296 3744 Shelagh: 02 4272 9251 Roz (Mon/Tues): 02 6290 1984
Penrith Port Macquarie Southern Highlands* Taree Wagga Wagga* Warilla/Shellharbour Wollongong Woy Woy* Young
2nd Wed 9.30am 2nd Tues 10am 2nd Fri 10am 1st Fri 10am 1st Thurs 1pm 3rd Thurs 1.30pm 2nd Tues 10am 3rd Tues 10am 4th Wed 10.30am, Bi-monthly FIBROMYALGIA SUPPORT GROUPS Bowral 2nd Friday 12pm Charlestown Bi-monthly FIBROMYALGIA SUPPORT GROUPS Southern Illawarra Womens Group Last Wed 2pm ACT 2nd Tues 12.30pm FIBROMYALGIA SUPPORT GROUPS Wollongong
* run warm water exercises
Pearce Som. Cent. Collette St
Ron: 02 6646 3067 Carol: 0400 439 505 Margaret: 02 63668045 Adele: 02 6374 0248 Judy: 02 4967 5694
Lorna: 02 6352 1984 Veronica: 02 4966 4649 Trish: 02 4454 0205 Norma: 02 4751 3417 Pam: 02 6584 6687 Margaret: 02 4885 1430 Marilyn: 02 6556 3839 Lorraine: 02 6926 3203 Sheila: 02 4296 1340 Lee: 02 4225 3521 Valda: 02 4341 5881 Brenda: 02 6382 3247
Winsome Stephenson: 02 4284 8890
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HEALTH & FITNESS
TIMETABLE FOR TERM 2, 2013 Arthritis NSW coordinates a number of warm water exercise and Tai Chi classes at various locations across Sydney.
WARM WATER EXERCISE Venue
Day
Times
Mowll Village Retirement Village – Castle Hill
Monday
2.30pm
Tuesday
1.30pm, 2.30pm
Thursday
1.15pm, 2.15pm
Karonga School - Epping
Saturday
8.00am
Royal Prince Alfred Hospital – Camperdown
Monday
5.00pm, 6.00pm
St Lukes Hospital – Potts Point
Wednesday
12.30pm
Saturday
9.00am, 10.00am
Canterbury Hospital - Campsie
Wednesday
1.30pm, 2.30pm
Lane Cove Physio
Thursday
5.00pm
Venue
Day
Times
Salvation Army Church Hall - Hurstville
Saturday
9.00am
TAI CHI
Please contact Melissa at Arthritis NSW on 1800 011 041 for more details or to attend a class. Please contact your support group or branch for classes in your area, not listed.
Memorial Gift We thank the family and friends of MARIA GRACE PINO who have marked her passing by making a donation to Arthritis NSW. We are grateful for this support and join in the commemoration of the life of a valued member of the community.
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ASIA NSW Arthritis Matters Mag2012.indd 1
16/05/12 10:41 AM
THE ORIGINAL
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