Living Well with Serious Illness

 

 

 

 

 

 

 

 

 

 

 

 

Living with a serious illness, one that is progressive and will likely shorten life, can affect every area of life not only for the individual with the disease but also for family and lifestyle.  

Advanced cancer, motor neurone disease, and other neurological degenerative conditions (end stage organ failure) are diseases not necessarily reserved for the older population. Such diseases can raise psychosocial and practical concerns including lack of financial security, care of children and symptom management. Navigating the healthcare system and knowing the supports and treatment choices available can be confusing at times. 

The Living Well with Serious Illness program can provide support to address the practical, physical, social, emotional and spiritual issues that often accompany living with a serious illness. The program can provide guidance to a person recently diagnosed with little idea of where to begin, or assistance in managing symptoms and making plans for future care for a person with deterioating health. 

The unique ‘Living Well with Serious Illness’ Program, delivered by Northern Health Network has two components; nurse care coordination and psychological therapy, both with a focus on promoting quality of life. Whilst some people may be referred to a specialist palliative service at some stage of their disease, many receive most of their care through their GP. Additionally, this program aims to keep the GP at the center of care through regular communication and support to deliver care within primary health care. 

Who is the program for?
Adults and their families living in the Gawler-Barossa Region who have a progressive and life limiting illness.

Who can refer?
GPs, specialists and allied health practitioners. Patients can also self-refer.

When to refer
At any time following diagnosis as the aim is to promote ‘living well’ with the illness, anticipating future need and putting plans in place. People often receive episodes of care during various stages of the illness. 

Service offered
Nurse-led care coordination (e.g. providing support and information, access equipment, planning, linking services, ensuring communication between healthcare providers) and psychological therapy.

Referral process
Complete the Living Well with Serious Illness Gawler-Barossa Referral Form and fax to (08) 8252 9433. The Referral Form is available on Sonder’s website.

The patient can contact Sonder directly on (08) 8209 0700 and ask to be contacted by the Living Well with Serious Illness team.

Example Patient Case Studies

older-man-getting-his-lungs-listened-to-by-male-doctor"John lives with advanced COPD and is reliant on 24 hr oxygen therapy. He has just been discharged from hospital after an acute presentation of breathlessness and chest pain; exacerbated by carer fatigue. A pattern was emerging of repeated hospital presentations with breathlessness, with no identified medical cause for the exacerbation of symptoms. 

Consequently a significant amount of his health care was being provided through acute services. He has not discussed his end of life wishes with anyone."

 

"Suzan has recently completed chemo-therapy for Stage IV cancer. She is contacting her specialist and GP multiple times a week with worries about recurrence and high psychological distress. Her asthma symptoms have become hard to control due to anxiety. She speaks of difficulty in making sense of information provided to her and decision making because of her high level of distress during 
appointments. 

She has concerns about the care of her children as her health deteriorates. Suzan previously accessed psychological support from a generalist provider, but found the lack of specialist knowledge, skill and understanding about the issues crucial to living with advanced disease was off putting and she didn't continue."

 

Both John & Susan were referred to the Living Well with Serious Illness Program via their GPs. John & Susan found great benefit in participating in the program. Whilst the nurse care coordinators worked with John to coordinate appointments and navigate through the healthcare system, Suzan was able to access tailored psychological therapy services and make plans for future care as her health deteriorated.