Cystic Fibrosis South Australia

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Statewide Services Information

3 July Bulletin:

Since our last update:

We attended the CFSA May Community Forum and talked about the general directions for the service.  Thank you to those able to attend, your comments and observations were helpful. 

From unspent 2007-08 funding we have been able to assist with the purchase of some needed equipment for patients with CF in the WCH and the RAH.

Our Communication Plan is now at the stage of final sign-off.  We will then start the development of our web page (this will be located on the Department of Health’s website).

We have started on the development of a project to examine the potential to extend and improve home care services for people receiving IV therapy.  Input from patients, families and carers will be an important part of the consultation phase.  There will be more information about this as soon as we have finalised the project proposal.

A demographic profile of the CF population in South Australia has almost been completed.  This shows that over a quarter of the population live outside the Adelaide metropolitan area.  We have had initial discussions with staff from Country Health SA about how we can work together to ensure that the needs of people living in rural and remote areas are properly taken into account.

We have also talked with the Coordinator from the WCH about using their video-conferencing facilities to help us get input from country residents.  With links in most public hospitals across the State, this looks promising.  Again you will hear more about this once we have confirmed what is possible. 

We attended the CFSA hosted launch of the Cystic Fibrosis Standards of Care in June and have now made numerous copies for distribution to WCH and RAH staff.          

We are continuing to support the transition of young adults from the WCH to adult services at the RAH.  15 people have successfully transferred their care so far. 

State-wide Cystic Fibrosis Service:

Cathy Isam                                                     Dr Hugh Greville
Service Manager                                            Clinical Director
Level 3 Norwich House                                  Chest Clinic, Royal Adelaide Hospital
77 King William Road                                     North Terrace
North Adelaide SA  5006                                Adelaide SA  5000

15 May Bulletin:

Main activities to date:

• getting to know people, places and systems (particularly for Cathy who is new to the Department of Health and Cystic Fibrosis)
• setting up a new office
• supporting the Women’s and Children’s Hospital and the Royal Adelaide Hospital in re-establishing the transfer of care for young adults with CF to adult services
• discussing key issues and concerns with service providers and the CFSA
• working on the formation of a State-wide Cystic Fibrosis Service Reference Panel (this panel will comprise individuals who bring together a variety of experience and expertise to advise on Service scope and priority directions)
• developing a communication plan
  

Hugh and Cathy also attended the TSANZ (Thoracic Society Australia and New Zealand) annual conference in Melbourne (29 Mar – 2 Apr) and talked with people about their service models etc.  As an overall approach the State-wide Service is keen to learn from what others are doing interstate and overseas with a view to bringing a range of experiences and perspectives into SA for consideration.

Where is transition?

As mentioned above the transfer of young adults with cystic fibrosis to adult services at the RAH has now been re-established.  This has been enabled with the approval for funding to recruit additional staff resources.  Six people have transferred to date and plans to transfer others at regular intervals during the rest of the year are being finalised.

The transfer from a paediatric to an adult service centre is of course only part of a longer term transition process that involves young people with CF gradually assuming responsibility for their own care.