STEP - Support Through Education Program

By the time of discharge from the Transplant Unit (Ward 4BT) patients are regaining their well- being, strength and independence with care needs and daily living activities. Most drains and drips have been removed. Despite patients and their support people often describing that they feel a little nervous about how they will manage everything in the first few days and weeks, most do extremely well. The treating team is close by to assess and respond quickly to any concerns.

Key points

1. Discharge planning commences soon after the patient returns to the ward from ICU. The time frame for discharge can vary quite considerably depending upon the patient’s medical situation and recovery. The treating team monitor patients very closely and provide regular updates to the patient and their chosen support people.
2. When discharge is looking likely the patient is provided with a day pass so they can have a few hours off the ward with their support person.  If all is well an overnight pass is then provided the following day so the patient can stay out of the hospital overnight for the first time since the transplant.
3. The patient returns to outpatient clinic the following morning with their support person or carer for the beginning of regular post-transplant outpatient appointments.

   The outpatient clinic staff provide detailed information about the frequency and process of the outpatient appointments. During the first few weeks the appointments are daily or near -daily, sometimes including weekends. The appointments reduce over time to 1 to 3 times each week. By the fourth month after the transplant, outpatient clinic appointments are usually 1 to 2 times monthly.

4. During the first few weeks after discharge, the patient attends the outpatient clinic near the Transplant Unit, Ward 4BT on the 4th floor near the blue lifts. In the weeks afterwards, the patient commences attending the Monday morning outpatient clinics held in the Ambulatory Renal and Transplant Services, known as ARTS Building No 31 which is located on Cornwall St, up from the Emergency Department. The Transplant Unit and W4BT outpatient clinic support the management of transplant patients who need review outside the ARTS and Burke Street clinic times.
5. The support person or carer is very important during the first few weeks, helping with such things as:
   • Transport to the PAH and support for the patient to attend clinics. Patients cannot drive for the first 4 to 6 weeks after their surgery.
   • Meal and food management, online or in-store shopping, meal deliveries, cooking
   • Alerting staff to any concerns
   • Assisting with medication, if this arrangement is in place
   • Supporting with activities to help the patient recover and rehabilitate, for example exercise such as going for walks; and maintaining social connections.
6. Patients who live in the Brisbane area are discharged directly to their home or to that of their locally- based support person. Patients who live in near- regional areas need to stay nearby and accessible to the PAH for about 4 to 8 weeks. Patients from more distant regional areas usually start their temporary relocation to Brisbane before the transplant. The distant regional patients stay in Brisbane for 12 weeks after their transplant. They are then discharged to their regional home if they can be safely managed from there.
7. All new liver transplant patients attend the Monday morning ground floor Outpatient Liver Transplant Clinics in the Arts Building or the Main Hospital Building during the first 12 months after their transplant. Patients are told which clinic to attend.
8. From the second year after their transplants onwards, patients attend the Wednesday morning clinics either at Burke St or by Telehealth.
   • Burke Street Clinic
   • Telehealth Clinics
   • Maps of PAH including ARTS and Burke Street

Accommodation and subsidies

Information about accommodation facilities near the PAH and regional patient subsidies to help with accommodation cost is available from their Regional Hospital, the PAH Travel Office and from the Queensland Liver Transplant Service social worker.

• Accommodation guide
• Queensland Patient Travel Subsidies
• New South Wales Patient Travel Subsidies

Carer payments

It is recommended that all questions regarding Centrelink Carer Payment and Carer Allowance be addressed to Centrelink. There is clear criteria to be met in relation to the degree of the patient’s disability, the nature of the care needs and the time for which care is likely to be needed.

An assessment tool is applied and scored. One of the criteria is that the care needs extend past 6 months. The experience of the Queensland Liver Transplant Service is that most patients enjoy a good recovery and are fully independent of post-surgical care by 3 months after their transplant. Therefore, liver transplant patients don’t always meet the criteria for Centrelink Carer payments.

If someone is already receiving a carer payment or allowance at the time of the patient’s transplant, this will continue for the time being. Please visit the Centrelink Carer’s information page for further information or phone 132 717.

Return to work and Centrelink income support

Patients who already receive Centrelink income support whilst waiting for the liver transplant will continue to receive income support in the months after the transplant. If you already report your income and circumstances to Centrelink, it is important to continue doing so as per usual. This way any changes to your income or employment circumstances can be noted and the relevant income support adjustments made.