Consumer Advisory Group (CAG)

CAG Chair

 

 

Ms Ornella Clavisi

Research and Knowledge Manager, MOVE muscle, bone and joint health, Australia

Ornella Clavisi is the Chair of the ANZMUSC consumer advisory group and is currently the Research and Knowledge Manager at MOVE muscle, bone & joint health, a consumer organisation representing people with musculoskeletal conditions.  In her role Ornella manages MOVE’s research program which funds researchers through project grants and scholarships as well as fostering consumer involvement in all aspects of research. She also has expertise in research methods, systematic reviews and evidence based practice and policy.  She has previously worked for the National Trauma Research Institute as  program manager working on large scale knowledge translation trials in traumatic brain injury and managing an Evidence Service for the Victorian Transport Accident Commission and WorkSafe Victoria; as the Research Manager of the Australian and New Zealand College of Anaesthetists (ANZCA) Trials Group; and the Monash Institute of Health Services Research developing evidence based reviews for the Medicare Benefits Advisory Committee and Pharmaceutical Benefits Advisory Committee.

CAG Members 2016-2018

Ms Suzie May, WA

Suzie Edward May has been an active consumer advocate in musculoskeletal disease since 2005, with Arthritis and Osteoporosis Western Australia and Arthritis Australia.  She is the author of ‘Arthritis, pregnancy and the path to parenthood’ the only book of its kind to discuss issues of pregnancy and parenting with chronic arthritis from a consumer perspective.  Suzie has been lecturing medical students on the ‘lived experience’ of musculoskeletal disease since 2006 and is a regular keynote speaker at various health events.  As a qualified Lawyer and Welfare Officer, Suzie has had a varied career in health, social welfare and law which has seen her advocate for consumers with a range of social, health and justice issues.  Suzie is currently the Deputy Chair of the East Metropolitan Health Service in Western Australia and a Researcher at the University of Western Australia Law School.

 

 

Ms Annie McPherson, VIC

President and founding member, Ankylosing Spondylitis Victoria Inc. VIC

Annie is 60 years old and originates from country Victoria, Numurkah and has lived in Kew for the past 40 years. She has Osteoporosis, Psoriasis and severe Ankylosing Spondylitis (AS). She was first affected by Ankylosing Spondylitis (AS) and bed-ridden for 3 months in 1971. After expending considerable periods of time managing her AS, undergoing a number of surgical procedures, working part- time and juggling home life, she retired in July 2003. In 2002 and 2003, while recovering from hip replacement surgery, she observed that many people with AS were finding their rehabilitation from surgery and return to everyday life extremely difficult. She realised that these difficulties were exacerbated by the lack of awareness and support of AS arthritis conditions amongst the general community. In 2004, via Arthritis Victoria seminars, she came into contact with like-minded individuals, Greg Tate, author of AS national newsletters, Dr Lionel Schachna, a rheumatologist who had recently returned from working in United States and had joined the Austin Hospital’s Spondylitis Clinic. A group of enthusiastic dedicated volunteers convened at the Austin Hospital and together with Greg, Lionel and herself, formed the AS Group of Victoria, as a peer support group for this specific condition.

 

 

Ms Linda Spurrier, ACT

Practice Nurse, General Practice, ACT

Born in New Zealand and migrated to Australia in 1991 for work. Lived with RA for the past 16 years while working as a Registered Nurse including 15 years in Emergency Nursing and 7 years as a Practice Nurse. Winner of two ACT Nursing and Midwifery Excellence Awards. Served 2 years on the Board of Capital Health Network (ACT Primary Health Network) as an Allied Health Director. Belong to a local support group for consumers with RA and Sjogren’s Disease. Cater for two sons with Benign Joint Hypermobility Syndrome and have many friends and family members with musculoskeletal disorders. Currently involved in the development of support services for consumers with any form of musculoskeletal disorders in particular middle aged adults with RA and consumers with JIA. For the past 2 years has served as the Consumer Board Member for Arthritis ACT and also as a member of the National Arthritis Consumer Representative Group. Writes a blog to provide consumers with information and support on ‘living with musculoskeletal disorders’. Passionate about consumer knowledge, self-management and making informed choices.

 

 

Ms Sally Carkeet, QLD

Retired Clinical Nurse, Gympie, QLD

Sally has a 45 year background in Nursing with a broad experience from patient care through to Executive positions including Manager of a small rural Private Hospital. She was diagnosed with Rheumatoid Arthritis (RA) 23 years ago. Now her RA is in remission, due to a medication that, she trialled initially for a six month period, then was invited to continue for a further five year trial. While on the trial, she was approached by Roche to act as patient advocate for the medication and in 2010 she was invited to the Conference in Sydney which showcased Actemra. Her participation was through a DVD production and as a member of the panel review of the medication. Both these initiatives highlighted her involvement as a patient advocate and how the medication and the trial had affected her life. Three years ago Actemra was due to be accepted on the PBS, via her Rheumatologist she acted as a patient advocate by writing to both the Government and PBS outlining the positive outcomes for patients receiving Actemra and why consideration should be given to this RA medication and the potential benefits to the community of RA sufferers, including the decline of arthritic deformities and associated costs. Her experience with the drug trial was both interesting and exciting, and she knew she was well covered ethically, medically and legally with regular reviews.

 

 

Ms Charlotte Hewson

Medical student, University of Otago, Wellington, New Zealand

Charlotte is from Wellington and is currently studying medicine at the Otago University. She hopes to specialise in paediatrics when she graduates. She is 20 years old, and was diagnosed with rheumatoid arthritis when she was 3, so has lived with it for as long as she can remember. Her goal is to get involved with younger kids to help them to deal with conditions like this. Being a youth leader for Arthritis New Zealand has been one of the most rewarding experiences of her life, because she has been able to take what has happened to herself and use it to make the road of a chronic illness a little less scary for children and their parents. She also desires to speak out about what is important to young people with chronic musculoskeletal problems and hopefully make a difference in the future management of illnesses like rheumatoid arthritis.

 

Ms Jacqui Gibson, VIC

Community Reference Group Committee member, Australian Health Practitioner Regulation Agency (AHPRA), VIC

Jacqui has provided community feedback on wide-ranging topics that AHPRA considers including issues relating to statutory offence complaints and has advised on the draft form used to file a statutory offence complaint. She has participated in AHPRA’s National Board conference for past three years including workshops on the NRAS Risk-Based Regulation Program and advised on possible areas for exploration and data collection. She is also an ongoing community representative on The Council of Education (CoE) which is the educational governing body of the Australasian College for Emergency Medicine. Jacqui is a community member of the Inner South Community Health Services which provide health and community services in the inner southern region of Melbourne. She has contributed as a Peer Mentor for the Health time and Women Yarning (Aboriginal women health promotion group). Apart from this, she has also assisted in the development of the Quality of Care report for the Department of Health from 2010 -15. She is a community representative on the Human Ethics Advisory Group in Cohealth.

 

Ms. Danielle Dunlevey

Manager National Sales and Lighting Solutions, SA

Danielle is a senior manager, with extensive telecommunication and utility experience. She has been suffering from Ankylosing Spondylitis (AS) for 25 years. Over this time she has gained personal insight of how pain can have a major impact on the everyday life of sufferers, families and friends. Her deep understanding of the issues that arise for sufferers has led her to being a strong advocate of research and development programs that could potentially improve the quality of life of those affected by arthritis and other musculo-skeletal conditions. She is an active member of Arthritis SA Business Strategy Committee, and has been a major contributor to the strategic direction of the “Take Charge of Pain” program and the development of sustainable strategic programs. As a long term sufferer of arthritis, Danielle is keen to use her life experiences and significant business experience to assist the board to realise the life expectations of people and society today and in the future, and deliver true value to people suffering from arthritis and related conditions. Her mission is to utilise her skills and experience, enabling her to drive, support and maximise the opportunities for Arthritis SA to be a leader in empowering people to achieve the best possible quality of life.

 

Mr John Ure, NSW

Volunteer StrokeSafe Ambassador for the Stroke Foundation, NSW