Consumers / Forums
 GlCS have facilitated and engaged consumers in the followingconsumer forums:-
Consumers are integral to ongoing cancer reform
These are some of the comments and recommendations made by patients and their family members which will be incorporated into initiatives and developments.
"...In early diagnosis-good support but as we go into the journey, no consistency and variations in services..."
"...Packages re: information at initial diagnosis should have been given..."
"...Coordination /case management of treatment is required to assist in navigation of treatment, GP's to have a stronger focus..."
Identified Strengths and Gaps
Strengths
The strengths that were identified from the group in the current Grampians region are:
- Support Network – new relationships with people with similar experience
- Post treatment services available for physical, emotional and financial support.
- Initial diagnosis smothered with concern
- Ballarat well resourced
- Transport via Leukaemia Foundation of Victoria and Red Cross
- School aged children were able to video link with class mates and email. A tutor was organised.
- Networking amongst parents was a good support while child was an inpatient
- Support groups
- BHS offered mum support and accommodation while daughter had a transplant
- Challenge support group / Camp - Quality good support for siblings
- Shared Care Folder from RCH worked well
- Nurse Coordinators
- Information packages delivered quickly on arrival to ward
- Ability to choose to go on clinical trials or not
- Ronald McDonald House
- No waiting to be treated on public system
Gaps
The gaps that the groups identified in the current Grampians region cancer service are:
- Variance in services/ care
- In early diagnosis good support but as you go further into journey support decreases
- Counselling
- People/ Friends find it difficult to cope around me
- Time between cancer diagnosis and decision for cancer treatment to quick
- Support groups there is a big difference in support groups and what they provide
- Impact on career
- Giving up activities that I enjoy due to treatment
- Coordinated care lacking
- Information – Large amount for breast cancer but little for other cancers
- Financial information and access
- Accommodation in rural areas
- Travel allowance
- Drs don’t encourage patient advocacy by parents, families or carers
- Medical professionals don’t like to talk about statistics
- Drug Knowledge
- No advice on complications or late side effects
- Travel to appointments
- Difficult because of frequency and multiple on different days
- Treatment options not all close to home
- Different policies and procedures between hospitals
- Cost of medications
- Diagnosis give over telephone
- Rushed visits
- Inconsistency
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