ATODA Conference Report

Joanne Baumgartner

I attended this conference on Friday, June 21st as a HCCA consumer representative. Having worked as a volunteer at the Karralika Drug Rehabilitation Centre in the 1980’s, I was interested in hearing about the progress in this area. I was also pleased to have the opportunity to learn about how to discuss the issue of drugs with my family members and within the broader community generally.

Online Drug Safety and Counselling Methods

While the speakers’ presentations centred on their websites and online counselling methods, there was also discussion of how consumers have expressed a desire for more online information and counselling resources, instead of needing to call someone or physically present to a counselling service. The various drug organisations were certainly willing to fulfil those needs for users and found that they had greater success with their clients using these methods. However, there are some concerns with regard to the legal challenges and reporting requirements for professionals providing services online.

Generally, the use of interactive web sites allows up-to-date information to be provided to consumers in only a short period of time. The services are available around the clock, so drug users are able to access information about staying as safe as possible whenever they need to.

Tobacco and Smoking

Professor Ron Boorland from the Cancer Council of Victoria spoke about steps being taken to reduce smoking rates in his state. Electronic cigarettes have been introduced as a means of quitting smoking, with a major barrier being that people using this cessation method are experiencing conflict with other smokers in the workplace, who have to go outside to smoke.

Of all the services presented at the conference, the best drug treatment service seemed to me to be the Uniting Care Re Gen program that utilises both online and face to face support with “non rest” rehabilitation.

Joanne Baumgartner

HCCA Representative

23June 2013

ACSQHC consultation on a resource for nationally coordinated improvement in the care of patients with cognitive impairment in acute care

The Australian Commission on Safety and Quality in Health Care (ACSQHC) is developing a written resource to help guide nationally coordinated improvement in the care of patients with cognitive impairment in acute care. The resource will be based on the National Safety and Quality in Health Service (NSQHS) Standards.

After developing a draft version, the ACSQHC will be holding consultation forums to discuss the resource with both consumers and health professionals in each state and territory from October to December 2013. The Consumer consultation forum for the ACT will be held on Tuesday, October 29^th from 9:30am  to 12:00pm at Rydges Lakeside, 1 London Circuit, Camberra ACT 2601.

Information about the consultation can be found here. The ACSQHC are particularly looking for consumers who have had a lived experience with dementia or delirium, but all consumers are more than welcome to attend. There will also be an online survey available for providing basic feedback on the draft resource from 14^th October until the 6^th of December.

If you are interested in attending the forum, expressions of interest are being collected online at: https://www.surveymonkey.com/s/ciconsultationregistration

The Health Care Consumers’ Association is assisting with promoting the ACT forum and collecting feedback. We will send out a link to the online survey when it becomes available and distribute the draft resource to consumers who wish to participate in the consultation. If you have any further questions about the consultation in general, please contact the Project Team at cognitive.impairment@safetyandquality.gov.au or (02) 9126 3648.

Consumer Experience and Expectations of General Practice in the ACT: A Snapshot 2013 survey

We are very pleased to announce that the Consumer Experience and Expectations of General Practice in the ACT: A Snapshot 2013 survey is now live. Through this survey we expect to obtain a better understanding of what consumers experience, want and expect of general practice in the ACT.

In 2009, HCCA conducted a similar survey and more than 600 people in the ACT completed it. The findings of that survey can be viewed here.

The material we will collect from this survey is valuable and will inform our work with the ACT Medicare Local as well as with ACT Health. 

The survey will take 10 minutes to complete and your responses are anonymous. This survey will close on Friday, 4 October 2013.

We would appreciate it if you could share this survey with your networks. The findings of this survey will be available on our website later this year.

If you have any questions about the survey please do not hesitate to contact us.

Complete the survey the survey here:

https://www.surveymonkey.com/s/3HLC8LC

"If you want to get fit, run 10k. If you want to change your life, run a marathon." - Rob de Castella, Murray Chapman Speaker Series

Former Olympic and Commonwealth Games marathon runner, Rob de Castella, delivered the address at the latest event in the Murray Chapman Speaker Series on 28 August.  De Castella spoke about his work with the Indigenous Marathon Project, and the potential for such programs to help in addressing physical and psychological issues within Aboriginal and Torres Strait Islander communities.

The Indigenous Marathon Project was born out of a conversation between documentary filmmaker Matt Long and de Castella in 2009, where Long suggested that perhaps Indigenous Australians could be competitive in the marathon at an international level.

What followed from this conversation was a journey of discovery and inspiration.  De Castella and his team undertook a "recruitment drive" in Aboriginal and Torres Strait Islander communities, and selected four young men - Juan Darwin, Joseph Davies, Caleb Hart and Charlie Maher - from Arnhem Land, the Kimberley and the Central Desert to train for the New York Marathon.  

Throughout the training process, de Castella was confronted by the myriad of social, cultural and psychological issues that impact on the men and women living in these Aboriginal communities.  The project became about much more than just entering a marathon - it became a mission of self-empowerment, working to dispel the sense of hopelessness and despair that many of the community members experience.  

Working towards that first New York Marathon, de Castella revealed that there were a number of unexpected pitfalls along the way, including the process of obtaining a passport for one of the competitors. Juan Darwin, from Maningrida, didn't have a birth certificate, making the paperwork associated with his application rather difficult.  Darwin eventually received his passport a few days before the team was due to leave for New York.  His friends and family in Maningrida were incredibly proud of him, not, as de Castella noted, because he was going to run the marathon, but because he was the only person in the community to have a passport. Training also proved troublesome in Maningrida, where packs of wild dogs didn't look too favourably on would-be marathon runners improving their stamina.  This issue was resolved with the help of the local police, who were able to drop Darwin further outside of town, allowing him to run back - slowing to a walk when the dogs appeared, of course.

De Castella at an early training camp with
Juan Darwin, Joseph Davies, Caleb Hart and Charlie Maher

Ultimately, despite the setbacks, all four men crossed the finish line at the New York Marathon. Their story was the subject of the 2011 documentary Running to America.

The Indigenous Marathon Program has grown in leaps and bounds since that first "trial run". Nominations for the program are received each year from November to January, for potential participants, men and women, between 18 and 30. De Castella said that usually they receive 130-150 nominations.  The program team whittle down the field, and then visit nominees in their communities.  Successful nominees are then invited to attend a number of training camps, the first of which is held in Canberra. Participants in the program undertake a Certificate IV in Indigenous Health and Leisure, providing them with a vocational qualification after the program has finished. The program has now entered runners in the New York, Boston and Tokyo marathons.

As de Castella noted, the program is about far more than just running, or a trip overseas. Many people living in these remote communities are sick of seeing their friends and family dying from chronic disease, or addictions to drugs and alcohol, and want to do something positive. As de Castella learned through that first training process, chronic illness cannot be addressed unless people are empowered and have a sense of their own worth and access to educational and vocational opportunities, giving them something to get healthy for. 

The core tenet of the Indigenous Marathon Project was summed up very nicely by de Castella:
 

Running is simple. Running is just putting one foot in front of the other. But it changes you.

And it can help you change others.

Heather McGowan

Project Officer

Medicines and Food

A couple of years ago Janne Graham had the opportunity to attend a pre-conference dinner conducted in association with the Gerontology Conference. The guest speaker Yvonne Coleman, Nutrition Consultants Australia addressed the issues related to medicine/food interactions and participated in a panel with Judith Schmerler a practice nurse and Janne Graham on the topic.

This was Janne’s report from this event:

Although some of the information I heard was familiar it is the first time I have actually been confronted by the depth and breadth of the issues. I hope this summary may be helpful to others.

Medicines can affect nutrition at many points. Food intake can be affected directly by either increased or decreased appetite, or indirectly through adverse reactions such as nausea. Nutrition absorption can be affected directly through inhibition of absorption of nutrients because of a drug or indirectly through such things as altered gastro intestinal tract pH, bacterial overgrowth. Some drugs alter the nutrient metabolism such as phenytoin which increases metabolism and therefore the requirements of Vitamins D,K and folate. Nutrient excretion can sometimes be increased or decreased through medicine use. Of course multiple medication use can confuse all this.

Equally food can alter drug effects. We tend to be aware when we must have medicine with (or without) food. Other issues may be changes in diet, malnutrition which may exacerbate some drug effects, or weight change may need to be taken into account for dosage. Lastly there are the known and unknown food/drug and drug/food interactions.

This field is not well addressed, as many consumers will already know. Often the information we seek is not available, the research and testing has not been done and/or our health professionals do not take these complexities into account. Drug/food interaction advice is often inconsistent and falls into several main groups – advice not provided; foodstuffs contra-indicated, and advice yet to be determined.

Some actions which individual consumers may engage in to focus attention on these matters were touched on in the panel discussion:

• Consumers could contact pharmaceutical companies and ask them about know nutrient issues in relation to their products. There is rarely any information on the CMI because the product is rarely tested or effects measured in relation to trial subjects’ diets. Consistently asking will impact on the companies’ statistics and point to issues for further research. TGA does not require such information and post-market surveillance and complaints procedures are not well geared to pick up such sources of adverse events.
• Report possible inter-relationships to the Consumer Adverse Medicine Event (AME) line (1300 134 237) or seek information from the NPS Medicine Information line (1300 888 763).
• Ask prescribers and pharmacists about food in relation to our medicines.

Consumers and carers will need especially to be alerted to the issues as they may affect older people, in their own home or particularly in residential care. The panel recommended that carers become familiar with the accreditation standards for Commonwealth funded residential care facilities and report recognized breach of food standards to authorities (1800 550 552). There was particular concern about small proportions and inappropriate foods being served (advice: take photos) and variability in the way in which medicines are delivered for people with swallowing difficulties (apparently it is more important to be consistent rather than what vehicle is used–yogurt, cooked apple, jam, honey etc).

Research and knowledge in this field appears to be in its infancy. For instance there is no dedicated research journal dedicated to this field There would seem to be a real opportunity for consumers to drive demand for better information in this arena. There are some clear structural barriers not least of which is the conceptual separation of food and medicines with different regulatory authorities, different manufacturing industries, separate professional groups and little coordinated drive for research. The organized consumer movement is similarly arranged at the national level with CHF more focused on medicines and Choice more on food. Both these organisations and the many consumer and community groups, whether members or not, will be holding through their members a wealth of information on the medicine/food interaction experiences Since the chemicals whether labeled medicine, vitamins, natural products, foods or supplements all integrate in our bodies consumer organisations may be ultimately the only ones in a position to raise the level of awareness.

Janne Graham