Thursday, March 22, 2012

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

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