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The success of liver transplantation as a therapy for a range of liver diseases has been well shown over time. This success has led to the steady increase in referrals.
QLTS provides people from Queensland and northern New South Wales who meet the established medical and psychosocial criteria for liver transplantation, with the opportunity for transplant.
Not all patients referred for liver transplant assessment are accepted onto the waiting list.
There are many liver diseases and abnormalities which can potentially be addressed by liver transplantation. The advent of multi- organ transplantation, for example: combinations of heart, lung, liver, kidney and bowel has widened the possible pool of transplant recipients.
What happens | Immediate outcome | Longer term outcome | Cost/PTSS/HHS implications |
|---|---|---|---|
The patient is referred to the Gastroenterology and Hepatology Department at PAH from the regional hospital, patient’s general practitioner or specialist. Patients are seen as inpatients or outpatients at this stage, depending upon their medical condition. | The patient is seen by a medical specialist usually at the PAH Burke Outpatient pre-liver Transplant Clinic. Sometimes the patient is already an inpatient at the PAH or another Brisbane Hospital at the time of the referral, so is seen as an inpatient at this point. | Decisions are made by the specialist about whether the patient is to proceed with a full pre-liver transplant assessment. If so, the patient proceeds to Step 2. | PTSS subsidies assist with accommodation and travel costs including mileage and public transport. Patients apply for PTSS help through their local regional hospital. Patients and families staying overnight in a commercial accommodation facility should check directly with the facility what PTSS documentation they need. |
What happens | Immediate outcome | Longer term outcome | Cost/PTSS/HHS implications |
|---|---|---|---|
The assessment usually takes place at the Princess Alexandra Hospital (PAH) on an outpatient basis. The patient is not usually admitted to hospital for these procedures. Some of the tests and investigations can be done at hospitals near where the patient lives. Others must be done at the PAH. Patients from the more distant regions need to stay in the Brisbane area during this assessment period. This enables them to take part in all their assessments, investigations and treatments– whilst an outpatient. Sometimes as per Step 1, another Brisbane hospital might be involved at this workup stage, particularly if the patient is being managed and referred for transplant consideration by a specialist at one of these hospitals. | The patient is guided through the assessment process by the liver transplant nurse coordinators. Many investigations occur at this stage, often over several days. The patient and family from the more distant regions will need to stay in accommodation near to the PAH—either with family and friends or in commercial accommodation facilities. | Once the assessment stage is completed, and results of investigations are known, decisions are made by the specialist about whether the patient meets the criteria for presentation to the Liver Transplant Assessment Committee. Refer Step 3. | PTSS subsidies assist with accommodation and travel costs including mileage and public transport. Patients apply for PTSS help through their local regional hospital. If patients and families are staying in commercial accommodation, they are advised to discuss documentation and arrangements with their regional HHS travel office. |
What happens | Immediate outcome | Longer term outcome | Cost/PTSS/HHS implications |
|---|---|---|---|
At the end of the assessment as per Step 2, if the patient meets the criteria for case presentation then the patient’s case is presented at the Liver Transplant Committee Assessment Meeting. Presentation of the patient’s case could either be very soon after Step 2, or it could be planned for several months away—depending on the individual medical circumstances. The patient does not attend these case presentations. | One of 4 main patient outcomes from the QLTS Assessment Meeting occur:
| See Step 4 | Nil |
What happens | Immediate outcome | Longer term outcome | Cost/PTSS/HHS implications |
|---|---|---|---|
| If accepted for transplant | |||
If accepted for placement on the waiting list for a liver transplant, the longer-distance regional patients must temporarily move to within a 2 hour driving radius of Brisbane. If already living within 2 hours driving distance of Brisbane—simply stay put, no need to move.Being near the PAH is vital. The majority of patients listed for transplant choose to move to an area near PAH. If patients choose to live further away but still within the 2 hour radius, they need to have an excellent transport plan for getting to the PAH before and after the transplant. | If in reasonable health, the newly accepted regional patient usually returns home for a few weeks to prepare for their temporary move to the Brisbane area. If too unwell to return home, patient begins their wait for liver transplant in Brisbane. The waiting time for a transplant is always unknown. A donor liver could be several days or 1 to 2 years away. | The patient waits for a transplant, which happens when a donor organ becomes available. If transplanted, the patient is hospitalised for 7 to 10 days, on average after the transplant and attends daily or near-daily liver transplant clinic for several weeks. The patient then continues attending weekly clinic appointments for 3 months or so, after the time of the transplant. All patients must be ready and able to attend the PAH for up to 3 months post-transplant. The length of time for which patients and their carers need to stay near the hospital during the post- transplant and discharge timeframe, is determined by how far their home region is from the PAH, and their post-transplant medical condition. Patients from North Queensland for example, usually stay in the Brisbane area for 3 months post-transplant. Patients who live within a few hours drive of Brisbane generally, stay in the Brisbane area for 4 to 8 weeks after their transplant. | Long term financial support is available for PTSS eligible patients. |
| If accepted for transplant awaiting further tests or treatments | |||
| The patient is not placed on the waiting list yet until further investigations or treatments occur, for example, dental work. The results of these tests or treatments could determine if the patient will be listed or not. | The specialist will decide whether to discharge the patient to their home region for the time being, or request they stay nearby. | Once the outcome of the additional investigations or treatments is known, a decision will be made by the specialist as to whether the patient is listed for transplant or not. | Regular PTSS support as described in this document is available to help eligible patients with transport and accommodation costs. This enables patients to obtain the follow up investigations and treatments. |
| If not accepted for transplant | |||
| If the patient is not accepted onto the liver transplant waiting list, the patient is told and arrangements are made for follow up care. | The patient is referred to another clinic at the PAH for ongoing outpatient management or is referred back to the referring doctor. In some situation, this might involve referral to palliative care and support services. | The patient does not attend the pre-transplant clinics in the long term—as per the previous column. | Regular PTSS support is available to enable eligible regional patients to return to their home regions for follow up treatment and care. |
Under current PTSS guidelines, eligible patients an receive financial help up to $60 per night staying in a commercial facility, and their approved support person can also receive up to $60 per night. So, for 2 people, a total of $120 per night maximum. If staying with family and friends, a $10 per night (total) subsidy is applicable.
Long term stays of over 3 months are calculated differently, as seen in the points below.
Because pre and post liver transplant patients often stay in Brisbane for quite a few months, the subsidy payments might be worked out differently by the patient's HHS. The subsidy amount provided is up to the patient’s regional Hospital and Health Service (HHS) to decide. This decision by the regional HHS occurs because whilst the PTSS scheme is a state-wide scheme, it is managed at the local regional HHS level. Therefore, every regional HHS manages the PTSS Guidelines according to local needs.
More recently, the regional HHS’s have been supporting transplant patients and families at the equivalent rate of the single commercial rate—up to $420 per week. This enables patient and families to receive a significant contribution to their rental payment. There are many rental options which provide flexibility and choice for patients and families.
More information:
When a patient, or family on patient’s behalf know they are being referred for transplant assessment or is to be definitely listed for a transplant and is seeking PTSS support - they should tell their regional HHS Travel Office. The Travel Officers will then be able to tell the patient and family about what documentation is needed. Specific subsidy amounts and payment arrangements can be worked out. These arrangements continue until the patient is discharged back to their home region—usually about 12 weeks post-transplant.
Sometimes patients and families from more distant regional areas choose to stay in Brisbane, after being given clearance by the treating team to return to their home region.
There could be many reasons for this. Family members might have new responsibilities or commitments in the Brisbane area. Children might be settled in schools with families preferring to wait until the end of a school term before returning home.
Once medical clearance is given, the PTSS support is discontinued and any ongoing accommodation costs become the patient's and family's full and immediate responsibility.
The QLTS oversees the lifetime care of liver transplant patients with the patient’s general practitioner and/or regional Hepatologist. If a patient moves interstate or overseas, they can be referred to another liver transplant unit for ongoing management. For the first 12 months post-transplant, patients are reviewed fortnightly or monthly in clinic at the Princess Alexandra Hospital either in person or via telehealth. The clinics are held on Monday mornings. Appointment details are provided to patients. After the first post-transplant year, clinic visits reduce to 3 monthly or according to need.
Over time, the number of clinic visits generally reduces to once or twice a year. Blood test results are continually monitored by the QLTS coordinators and medical staff. If a review is needed, the patient might be recalled to the PAH as either an inpatient or an outpatient for further testing or treatment. The PTSS implications are similar to those of step 1 or 2. Often a support person is needed as the patient is unwell or needing emotional or mental health support.
If the regional patient dies during any of the 4 steps of assessment and treatment, the PTSS subsidy relating to a deceased person as outlined in the PTSS Guidelines applies.
Transplantation depends 100 per cent on organ donation. Some patients wait longer than others to be offered a transplant. Donor organs are matched with a recipient based on factors including blood type, weight of the recipient or donor, how long a patient has been waiting, and the sickest patient at the time of the donor organ offer. National clinical and ethical guidelines are in place.
Patients with Advanced Liver Disease often experience anxiety as they wait for a transplant and can become more ill. There are no guarantees regarding donation and transplantation.
Other factors which influence organ donation and transplantation include:
Patients from regional Queensland need to move to the Brisbane area for possibly significant periods of time. This move is a requirement of being on the QLTS waiting list. Sometimes entire families move which can involve organising housing, employment transfers and new schooling or care arrangements for children. Whilst all this can be challenging, patients and families generally find ways to make it work successfully.
Patient eligibility for Centrelink support including rental allowance and carer payments, varies according to each individual situation. It is important to contact Centrelink for advice. Some patients pay the mortgage with rental payments received by renting out their homes whilst away and waiting for the transplant, adding finance from other income sources to top up the mortgage repayment. It is a personal choice as to how families manage the temporary move to Brisbane. Patients generally don’t need to sell their main residence whilst awaiting transplantation.
PTSS subsidy is recognised as a critical component enabling patients to remain near the hospital both during the pre- and post-transplant stages. The majority of patients do return to their home regions once transplanted.
There being only one liver transplant unit in Queensland, Queensland Health and Metro South HHS has a responsibility, to ensure that post-liver transplant recipients can access any assessment and treatment at all stages of the treatment process.
De-centralisation of PTSS funding, places the responsibility for management and provision of PTSS subsidy, entirely upon each individual Regional HHS. Goodwill, sensibility and correct interpretation of PTSS Guidelines have supported the optimal management of Queensland’s regional and remote liver transplant patients, since liver transplantation commenced.
Temporary relocation guide, 25 Nov 2022, [https://oss-uat.clients.squiz.net/health/services/specialists/queensland-liver-transplant-service/temporary-relocation-guide]
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