Consumer Representative Training - March 2012

HCCA Training, March 2012

Consumer Representative Training is well underway for 2012. The two-day course run on Friday 23 and 30 March was the first of three training sessions that will be held this year. Training provides an opportunity for health consumers to come along and learn more about Health Care Consumers’ Association (HCCA) and how to become more involved in the health care system. This year some slight modifications have been made to the content and presentation of sessions. Participants at the March training were very positive about the new approach, which is a great starting point as the program continues to develop.

Fifteen people attended March’s training, three of them being new HCCA staff members. All participants came along with an open mind, ready to learn, share and and participate, making it a worthwhile experience for everyone. Across the two days, four modules were covered. The first day began with an introduction to consumer participation and how to be an effective consumer representative. These modules provided a general background about HCCA and explained how the organisation works. The focus then concentrated on consumers themselves and how their participation can help shape the health care system by working alongside health professionals.

The second day covered the third and fourth modules on patient safety issues and the ACT health system. The third module included important information about how to stay safe in the health system and the different options of health care available to everyone in the ACT.   Main messages from the patient safety issues session included questions to ask when seeing a medical professional, the importance of people washing their hands and understanding medicines. This session also included a game of health care bingo, for a bit of fun!

With many new health buildings being constructed under the Health Infrastructure Project (HIP) throughout the Territory, it is exciting to understand what will be available to consumers in the near future. This was the purpose of the fourth module. Although construction sites may be a bit inconvenient for now, the completed projects will provide better services and access for all.

Three Consumer Representative guest speakers provided insight into the role of the Consumer Representative. They shared their stories of how they became Representatives and the influences they have made since. A frequently asked questions session covered the experiences of representatives and painted a picture of what it is like to be involved in committees. On the second day participants received a fact sheet with advice and useful tips on how to be a really effective Consumer Representative. It was a great way to finish what had been two very informative days.

Overall, the feedback received from March’s training was fantastic. Participants enjoyed the sessions and many have since signed up as members of HCCA. Preparation will soon begin for the next training session to be held on Saturday 23 & 30 June. If you would like to find out more about June’s training, please send us an email

Alisha Summerton

Training and Events

HCCA Submission on the ACT Immunisation Strategy 2012-2016

Recently, the HCCA had the opportunity to provide feedback on the draft proposal for the ACT Immunisation Strategy 2012-2016. This four year strategy is aimed at ensuring the “quality, safety and effectiveness of the ACT Immunisation Program”, as well as improving immunisation coverage, decreasing the prevalence of vaccine preventable diseases and continuing to deliver education and resources to vaccine providers.

The Strategy contained five key focus areas, each of which consisted of a number of specific objectives. The focus areas were: childhood immunisation, adolescent and adult immunisation; populations at risk; communication and education; and the supply and safety of vaccines.

Immunisation is increasingly becoming a topic of great debate in Australia, as many people have become concerned with the adverse effects associated with certain vaccines. At the same time, there are also concerns regarding the accessibility of information and vaccines for members of the community who are considered particularly at risk of complications from vaccine preventable diseases. These include alcohol, tobacco and other drug (ATOD) users and new migrants, who are unlikely to have received adequate vaccination or disease testing in their country of origin. As such, it would be important for any new immunisation strategy to include plans to improve communication and education regarding vaccines as well as effective procedures for detecting and managing adverse reactions to vaccines. As health care consumers, we have a vital role to play in addressing these issues and need to be provided with the information and resources to do so.

The recommendations we made in our submission primarily revolved around the need for enhanced communication and information sharing between the ACT Government, vaccine providers and consumers in accordance with the Australian Charter of Health Care Rights. This will assist the strategy in meeting the requirements of consumer-centred care. We were particularly concerned that the focus area ‘communication and education’ concentrated only on vaccine providers, and not health care consumers.

The following reflects the key issues covered in our submission:

• We raised the possibility of developing a strategy to deal effectively with epidemics and any issues arising as a result.
• The need for the development of a clear framework to detect and manage adverse reactions that is easily accessible for consumers.
• The importance of open channels of communication between immunisation providers and consumers. This includes creating a non-judgmental environment that facilitates questioning and allows consumers to participate in our own health care.
• The need for effective communication between immunisation providers and culturally and linguistically diverse (CALD) health care consumers, particularly for members of migrant communities who may have missed out on vaccinations in the past.
• The need for the provision of expertly trained immunisation providers for members of the community who are immunosuppressed, have a history of severe allergic reactions, or are living with autoimmune diseases.
• That support needs be redirected from Youth Drop-In centres to other youth services and facilities with regard to vaccine provision.

Finally, it was recommended that the Strategy be finalised in consultation with a number of consumer groups, as they represent the individuals who are the focus of the strategy and will be most affected by it. This also applies to migrant groups, as CALD individuals represent a significant proportion of the ACT community and it is important that they have the opportunity to shape the policies relating to the health services they use.

You can read the full submission here.

Nicole Moyle
Research Assistant

Murray Chapman Speaking Series: Dr Tom Calma lecture

Recently I attended a lecture given by Dr Tom Calma as part of the Murray Chapman Speaking Series.  The Speaking Series is an initiative of the Reconciliation Action Plan Committee in honour of the late Murray Chapman, a passionate advocate for reconciliation and the father of one of my close friends.

Dr Calma is involved with indigenous affairs at local, national and international levels, and has been for many years.  He is currently a Social Justice Commissioner with Reconciliation Australia and the National Coordinator to Tackle Indigenous Smoking.

During his speech, Dr Calma discussed indigenous health outcomes, which, on the whole, are significantly worse than those of non-indigenous Australians.  Aboriginal and Torres Strait Islander communities experience higher incidences of infant mortality and deaths in middle adult ages than non-indigenous communities.  A number of “lifestyle” factors contribute to poor health outcomes, such as tobacco and alcohol consumption, obesity, physical inactivity and high cholesterol. 

Dr Calma’s approach to closing the gap on indigenous health issues is informed by a human rights and developmental approach to health.  He reminded the audience that every statistic is a life, and it is important not to lose sight of the individual’s needs in implementing health programs and reforms.  The Close the Gap campaign adopts this human rights based approach to improving indigenous health outcomes, and complements the Federal Government’s Closing the Gap program.

The social determinants of health also play a key role in developing strategies to improve the health of Australia’s indigenous population, with 75% of the indigenous population living in urban areas and 50% of indigenous households surviving on minimum wage. 

In a wealthy and developed nation like Australia, Dr Calma asserted, it is not credible to believe that health crises affecting less than 3% of the population cannot be successfully addressed.  Such success will rely on the continued ability of official programs to engage meaningfully with the Aboriginal and Torres Strait Islander population.

Heather McGowan

Research Assistant

Forum with health care consumers to discuss the ACT Chronic Disease Strategy

In recognition of the critical importance of effective chronic disease management, the ACT Government Health Directorate is developing a new ACT Chronic Disease Strategy, which will further develop the previous ACT Chronic Disease Strategy 2008-2011.  The strategy will explain how chronic disease care will be managed in the ACT community into the future.   

The prevalence of chronic diseases throughout the world is increasing significantly.  Effective chronic disease management requires working in partnership across a range of sectors, including consumers and community members, all levels of government , the private sector and non-government organisations.  It also means that consumers are supported in learning about the health and community services that are available to us.

So much of chronic disease management happens outside of the system.  We need a broad-based approach to this, including private and public providers of services, as well as services provided by non-government, community-based organisations (eg community transport, home help).  The development of the new ACT Chronic Disease Strategy requires wide consultation, and we are pleased to see that the Government is planning meetings with key stakeholders, consultative fora and a longer timeframe (6 weeks) to consult on the draft Strategy.  

Chronic conditions not only compromise our health and well-being, but can also have a significant impact on our family and friends, our capacity to be active in the community, as well as earning an income. 

Consumers need support to navigate the way through the wriggles and turns, and over the hurdles that occur in our health system.

On 28 February, Health Care Consumers Association hosted one of the first of these consultative fora.  The session was facilitated by Cathie O’Neill, a senior consultant specialising in the healthcare sector and engaged by the ACT Health Directorate to draft the Chronic Disease Strategy.

This post summarises specific areas which consumers wanted felt strongly about and which they wished to see addressed in more detail in the strategy.  

These included:

Chronic disease management outside the ACT Health Directorate (ACT HD):  an explanation of how ACT HD will promote the management of chronic disease within the community in the frequent circumstances when it falls outside the formal ACT HD system.

Advanced care and residential care directives: currently some consumers feel that despite having signed a care directive, their wishes may not always be respected because clinicians fear possible litigation.  

Links between Calvary Hospital and The Canberra Hospital: Ambulatory and outpatients: the strategy must address equity issues between the two hospitals in respect of referral for ambulatory services.  It needs to specify the number of patients at Calvary whose only continuity of care can be provided through referral back to ACT Health at The Canberra Hospital and outline a solution to address this “gap” in the system.

Diabetes: the Diabetes Strategy was still incomplete.  The Diabetes “Buddy” scheme appeared to have faded out.  Consumers wanted to know if there is a strategy to re-establish this excellent initiative?

Community Partners and Support Services: the invaluable services these groups provide need to be highlighted and formally recognised.  Many of these groups are actively supporting ACT HD to deliver its health programs and initiatives, but most lack funding, are under-resourced and much of the assistance they provide is not formally recognised. It is also felt that the HD ACT should do more to assist these Support Groups by advertising their services to the general community.  There is also a need to provide funding to educate GPs about community support services. 

Recognition of, and respect for, complementary medicine:  complementary medicine is extremely important and helpful.  However, services such as meditation, yoga and relaxation are only briefly touched upon in consultation with clinical staff.  This is an area which needs far more prominence and development, concentrating on specific areas of treatment.  

Listening to the patient’s story: getting the message across:  once qualified, clinicians often focus merely on treating a condition, rather than understanding and listening to the patient’s story. This should be used as an education tool right from the start; if medical students could be educated to improve, and understand the importance of, communication skills, this would be hugely beneficial to both patients and the medical profession as a whole.  It is also a low cost, effective solution to an ongoing problem.

Cross-referencing between health services: it is important that those living with a chronic disease are permanently recognised on admission to hospital; eg a system indicating “this is a chronic disease-registered patient”.  Currently, those with chronic conditions are only placed on a chronic disease register once they have been admitted to hospital several times; and they are eventually removed from the register, if they do not present at hospital again within a certain timeframe.  It is important that clinicians always recognise patients with chronic conditions, even when they have been admitted for treatments unrelated to their condition. 

Web-map for linking all relevant services:  there is an urgent need for a web-based effective “one-stop shop”providing details of all services available for those living with chronic conditions.  This discussion highlights the need for a comprehensive and current Health Services Directory that extends beyond services provided by ACT HD; many of the group were unaware of its existence.

Terminology to encompass “chronic disease”: people with chronic disease don’t think of themselves as sick on a day-to-day basis, because they live with the disease all the time; they would consider themselves to be “sick” if they have a flare-up of the condition.  It is also inappropriate to describe people as “sufferers” of a particular condition or disease, because, again, most do not consider themselves to be suffering from day to day.  “Living with a chronic condition” is an appropriate description.

Carers: play a vital role and must be included in the strategy.

Social workers: in many cases, social workers are too focussed on a narrow field.  They are often anxious to get people out of hospital and back home, without taking into account the patient’s family situation and pain management plan.  

Public holidays and weekends: it is important that the strategy explains how access to services will be handled during out of hours.  For example, oxygen services close down and the BOC emergency services are only able to cater for deliveries – they cannot, for example, cope with repairs or spare parts.  This puts consumers at risk.

Cross-border health issues:  the needs of those diagnosed in different health areas must be addressed – ie the strategy must include support for those living in NSW and accessing services in the ACT.

Discharge from hospital to home: it is concerning that many people, especially the elderly, are discharged from hospital without having the necessary support at home to cope with their condition.  A system needed to be implemented whereby patients could be monitored after leaving hospital to ensure they were being properly looked after.  

Secondary prevention:  consumers need quick and efficient access to advice on early prevention of chronic disease.  Currently there is room for efficiencies in this area – early treatment and prevention will offer huge savings.  Access to appropriate, timely treatment is needed – prevention is key.  For example COPD courses should be available for people before they contract the disease, rather than after they have been diagnosed.

Financial courses:  for many people with chronic disease, financial costs for treatment can be the “final straw”, adding yet another mental burden to their already stressful situation.  Mental problems caused by financial stress often exacerbate the physical condition.  Making people aware of their financial entitlements is important; this could be achieved through sponsorship with one or more financial services organisations.

Consistent case management: often you are your own case manager, but this is a complex task when you are dealing with declining health functions.  People need to be empowered and need an advocate.  It is important to have continuity – for example, having one case manager, rather than two or more, is likely to deliver a more effective outcome.

Community based Chronic Care Nurses and Nurse Practitioners: there is a strong need for nurse practitioners to coordinate care with other health professionals and a need for community-based Chronic Care nurses within the ACT.

Homogenous system: currently the system is not homogenous and the strategy must identify a plan to allow all stakeholders to communicate effectively to deliver a seamless and efficient service.  GPs and specialists are central to the strategy’s success.

The group agreed on the Draft Commitment Goals, which state:

“In the ACT we are all working together to ensure any person with a diagnosed chronic condition:

• Does not have to repeat their story unnecessarily

• Has a management plan, which supports self-management and contains goals for improvement and actions to take for acute or chronic events

• Is aware of relevant support options and how to access them

• Has their care proactively coordinated and managed

• Understands their need for, and adopts, secondary prevention

• Receives the best care, in the best place, at the best time

• Is supported by a system that is patient-centred, high quality and evidence-informed.”

Consumers will have the opportunity to provide more input to the strategy at “The Future of Chronic Disease Care in the ACT” forum on 16 March. 

Karen Jameson

Policy Officer

Palliative Care

The needs for palliative care services in the ACT are increasing, and have been reflected in recent news coverage, such as the ACT Government’s release of a tender for the procurement of a six-bed palliative care sub-acute facility and the opening of the new day hospice in Jamieson. The opening of the day hospice emphasizes the results of current research suggesting that the bulk of end of life care is still delivered in the community and that support should be given to the family and friends who often provide this care.

On 18 February 2012, the ACT Government released a tender for the procurement of a six-bed palliative care subacute facility. The tender is seeking a needs-based palliative care service, providing a Step Up / Step Down facility for adults transitioning from an acute care setting to home, or those needing an admission to a sub-acute facility to prevent a hospital or hospice admission. The successful tenderer will be required to use a palliative care approach in providing these services, based on the definition that “palliative care is care provided for people of all ages who have a life limiting illness, with little or no prospect of cure, and for whom the primary goal is quality of life” (Standards for Providing Quality Palliative Care for all Australians - May 2005). It is intended that the service will complement and work in partnership with the above existing palliative care services to ensure seamless transition between care settings. Submissions to the tender process close on 29 March 2012.

The ACT’s current Palliative Care Strategy expired at the end of 2011 and a review is underway, with completion expected by mid-2012. HCCA held a consultation on 24 February 2012 as part of this review to provide consumer input into the development of the new strategy for Palliative Care for the ACT. Key issues raised by HCCA members included:

·    Improved statistics on palliative care requirements and current service levels would inform better resource provision for palliative care in the ACT region.

·    Consumers need access to more information about palliative care services and the choices available to them, not limited to the Respecting Patient Choices program and Advanced Care Directives.

·    The National Pain Strategy should be linked into the ACT Palliative Care Strategy, and consideration given to more adequate services for pain management at home. Palliative care services should also address consumers living with chronic and acute pain.

·    A greater emphasis on services provided by expert Palliative Care Nurses / Nurse Practitioners could help addressed unmet needs.

·    Palliative care services should address the needs of different groups, including younger people – there are broader needs than just aged care.

·    Consumers should have more choice and access to a range of service providers, without being limited only to services provided by religious organisations.

The work of the review and the new ACT Palliative Care Strategy will help inform the planning and development of Canberra’s new Northside sub-acute hospital, and we hope will lead to improved information, access and provision of palliative care services to health care consumers across the region in the years to come.  HCCA prepared a submission to the ACT Government on the selection of the University of Canberra as the preferred site for building a sub acute facility that will include palliative care.

The Senate Committee on Community Affairs is completing an Inquiry into Palliative Care in Australia.  HCCA has completed a submission and we will put this on our website later this week.