Frequently Asked Questions
How does the Registry work?
- You are responsible for your ongoing health after a splenectomy or after a diagnosis of hyposplenism. We will assist you in this aspect of your health. Once registered, you will receive an education kit that includes an individualised treatment plan. You will also receive health updates and information on any changes to our recommendations.
- You or your GP can review our annually revised medical recommendations, as available on the Spleen Australia website.
- Spleen Australia offers telephone support regarding this health issue. If you are unwell or need any medical advice, you should see your GP as soon as possible.
- To ensure you continue receiving our health updates and other important information, please let us know if your contact details change
- We aim to be a “one stop shop” where we impart knowledge and information via the website and our educational materials.
What does this service provide?
- An education kit with information on the best way to manage this aspect of your health
- A telephone education session with a registered nurse
- Telephone support to ask any questions about this aspect of your health
a. Victorians and Tasmanians call (03) 9076 3828
b. Queenslanders call 1800 SPLEEN (775336)
What information do I need to have when I register?
- Dates and diagnosis of your spleen condition are necessary.
- Names and addresses of your doctor(s)
- All patients are advised, if possible, to have a copy of their immunisation history. This is available from your GP. Alternatively, you can have your GP fax your immunisation history to (03) 9076 2431, attention Spleen Australia.
How can I register with Spleen Australia?
Victorians and Tasmanians and Queenslanders who are registering themselves can do so online here
- As a guardian/parent
Victorians, Tasmanians and Queenslanders. It is the same process as registering yourself.
- As a health care professional
Victorians, Tasmanians and Queenslanders. Your treating health team can register their patients on-line.
- If you live in Queensland your health care professionals can refer you to the service.
- As an interpreter for a patient or a guardian for someone who lacks capacity to consent
Victorians, Tasmanians and Queenslanders Please contact Spleen Australia
PAPER REGISTRATION FORM
- Victorians, Tasmanians and Queenslanders download a registration form here
Do I have to register with this service?
We understand that not everyone is happy to have their personal information recorded in a database (registry), so NO, you do not have to register.
If you live in Victoria, Tasmania or Queensland your medical providers will have asked you if you are happy to register.
If you decide that you wish to be removed from Spleen Australia’s database, at any time, please contact us. However we will no longer be able to support you through Spleen Australia.
When should I see my doctor?
- If you are feeling unwell and have a high temperature, fever, sweats, chills or exhaustion, you should see your GP as soon as possible. These are signs of a bacterial infection. If you cannot see your GP within a couple of hours, you should go to the local hospital.
- You should also see your GP for booster vaccinations.
What exactly do you want me to do?
Allow Spleen Australia to document information relevant to your spleen condition.
In addition, there may also be the opportunity to take part in future research projects. At some stage, a research project may be developed and you will have the opportunity to participate, should you wish. In this instance, we will send a letter inviting you to participate. If you decide that you do not wish to take part in a research project, we assure you that your medical treatment will not be affected in any way. Please contact Penelope Jones if you do not wish to be involved in any research, call (03) 9076 3828 or if you are in Queensland call 1800 SPLEEN (775336).
What about my privacy?
- All patient information will be kept confidential and stored on servers at The Alfred Hospital and Monash University’s Department of Epidemiology and Preventive Medicine. After details have been entered on the registry’s database, a unique identification number will be allocated to each person’s record. This number will provide anonymity.
- Spleen Australia intends to use information provided to the registry for audit or research purposes. All research activities require ethics committee approval. We will not identify you in any presentations or publications without your permission. If you do not want your information to be used in research, please contact the manager of Spleen Australia call (03) 9076 3828 or if you are in Queensland call 1800 SPLEEN (775336).
- Spleen Australia staff and the members of the Spleen Australia Steering Committee are the only people who will have access to this data.
How did you get my name?
If you live in Victoria, Tasmania and Queensland, it is possible that your doctor has referred/registered you with Spleen Australia, or alternatively, you have registered yourself, your child or someone you are a guardian for, because you or one of these people have had a splenectomy or have had a diagnosis of a non-functioning spleen.
Who do I contact if I have any questions?
Penelope Jones, Bryony Hanton and Sharon Willems are available to answer any questions you or your medical practitioner may have.
See contact us page for more information.
Who do I contact if I have a complaint?
If at any time you have any concerns and wish to communicate these to staff other than Spleen Australia staff, please contact:
The Office of Ethics and Research Governance
The Alfred, PO Box 315, Prahran VIC 3181
T: (03) 9076 3619