Chapter 4 - Patient support and cross border issues
Patient support
...I would not see a carer as being a luxury; I would see it as
a baseline for negotiating really quite a challenging experience. Most people
within the metropolitan area have their carer up there, so it seems fairly
discriminatory that we do not provide that and that we do not see that as a
baseline for people who come from outside the metropolitan area and who may not
have had any familiarity with our freeways and our shopping centres and all of
those issues. Then of course there are the other issues of dealing with
treatment, with diagnosis; you really do need a carer there...If people do not
have a carer there – they are very lonely, they are very isolated, they are in
a very alien environment – they spend an enormous amount of money in ringing
long distance to get something of that support.[1]
4.1
An issue raised in all jurisdictions was PATS funding of an escort for
patients needing to travel for specialist medical care. All jurisdictions allow
an escort for children. For other patients, most jurisdictions (NSW, Queensland,
South Australia, Western Australia and the ACT) require the referring GP or
specialist to certify that an escort is necessary for medical reasons. In
Tasmania an escort is allowed if they are necessary to provide active
assistance while travelling or for medical reasons; in the Northern Territory
an escort is allowed if they are necessary to assist with patient care and the
support services at the place of treatment cannot provide adequate assistance;
and in Victoria an escort is allowed if the referring GP or the specialist
states that an escort is necessary.
4.2
Witnesses argued that the rules concerning escorts, particularly those
in jurisdictions which preclude escorts on grounds other than medical reasons,
ignore the very important contribution that escorts make to patient care and
well-being. The contribution includes assisting the patient with the practical
problems of travelling to a busy, unfamiliar metropolitan area, attending a
hospital or specialist appointment and finding accommodation. Even if the
patient is familiar with where they are going, their medical condition may make
it difficult to access public transport and/or their treatment may leave them
debilitated.[2]
The Great Southern GP Network commented:
The major concern we have at the GP network is patients being
discharged from the Perth hospitals and sent home unaccompanied by plane often
with no support person...There is a real need for the PATS scheme to provide a liaison
person who can provide additional care and support to patients travelling
alone.[3]
4.3
The assistance of an escort for older patients was highlighted,
particularly in the light of hospital admission and discharge practices.[4]
The needs of older people are discussed further in chapter 5.
4.4
In addition to assistance with the practical problems of travel,
witnesses argued strongly that escorts provide significant psychosocial support
for patients which is crucial to positive health outcomes:
The need for psychosocial and practical support during the time
of cancer diagnosis and treatment is a crucial factor affecting an individual's
psychological well-being. Patients who must travel long distances to obtain
treatment are often faced with the difficult decision to forgo the emotional
support of family whilst in the city due to the high costs of travel and
accommodation. Lack of this access to this support is a significant risk factor
associated with the development of co morbid anxiety and depression.[5]
4.5
Young people are particularly vulnerable. Those over the age limit for
automatic allocation of an escort may find it difficult to cope with the
treatment regime and being away from friends and family. The Cancer Council of
Australia commented:
Particularly in young people, we are seeing more frequently a
need to have psychosocial support to get through the often intensive
chemotherapy treatment regimes which have multiple side effects that cause
extensive distress. Being able to have someone close by to support them through
that, as well as having a multidisciplinary team, is absolutely imperative.[6]
4.6
The needs of other groups of patients were also discussed in evidence. Patients
with severe psychological conditions and distress find it difficult to travel
without an escort.[7]
In the case of patients who must be away from home for long periods because of
treatment needs, the lack of an escort can impact severely and increase
isolation and loneliness. Indigenous people find it particularly difficult to
be isolated their communities for extended periods of time. The needs of Indigenous
people are discussed in chapter 5.
4.7
Palliative Care Australia pointed to the special needs of those
diagnosed with a terminal illness which it made it a necessity for the presence
of an escort:
The diagnosis of a terminal illness is a time of extraordinary
stress. Requiring a patient receiving treatment to travel without a funded
escort is inappropriate, particularly in a palliative situation, where patients
experience extreme frailty. PATS arrangements should, as a matter of course,
cover the cost of an escort for patients receiving palliative care and include
provision for two escorts, particularly in cases of children.[8]
4.8
Another issue raised was the limited options for patients and/or their
escort to access assistance to return home for a period of time during an
extended treatment regime. This is especially significant when having to
relocate for long periods of radiotherapy and for pregnant women who may have
to relocate four weeks prior to birthing.[9]
4.9
The Australian Nursing Federation (ANF) argued that the current
arrangements around escorts are not patient focused and very few people find
that they are eligible for an escort. The schemes do not consider individual
patient needs such as the severity of individual conditions, the urgency
associated with the episode of care required or the length of time for
treatment.[10]
Women and children
4.10
With the closing of many rural obstetric facilities, women are now
required to travel to a larger centre to await the birth of their child. If
they cannot travel to a centre where they have family members, they may have to
stay some weeks in a town with no support. Witnesses commented that this
increased expectant mothers' anxiety and distress. Mater Health Services
commented:
In this day and age, when we are promoting two parents being
involved in the process of pregnancy and parenting and family, to be removed
from your partner at this critical time is quite devastating for some women,
and they do not cope all that well. In fact, I have got a number of examples
where women will refuse to stay and want to go home, even to the point of
putting themselves and the baby at risk because they do not want to stay
without some support from a partner or a mother or a family member.[11]
4.11
Maningrida Community Health Centre argued that escorts should be
provided for all women having a baby because of the improved outcomes that
derive from appropriate support. While this is the case for all women, support
is particularly important for Indigenous mothers:
Improved emotional and psychological coping with the birthing
process and fewer interventions have been demonstrated by the presence of a
support person. Such evidence is derived from the mainstream, so one would
imagine that that benefit would be magnified when the patient group are women
from traditionally-based Aboriginal communities, many of whom barely speak
English. The young age of many Aboriginal mothers, combined with limited
knowledge and experience of Western systems/hospitals makes for a particularly
disempowering experience.[12]
4.12
Associate Professor Sue Kildea provided the following case where the
inflexible application of guidelines resulted in a young, first time Indigenous
mother being unable to be accompanied by an escort although she was only 16
years of age.
Carly turned 16 years old a week ago. For most Australian women
this would be a time of celebration. For Carly the timing could not have been
worse. Carly was due to have her first baby and for this she was being flown into
Darwin, the regional centre. Being her first baby she was frightened. She
wanted to stay in her community to have her baby but was told she had to go.
She wanted her grandmother to come with her, after all her grandmother had been
a traditional midwife and had been preparing Carly for this event for months.
But the rules of the PATS system meant that Carly was now too old to have a
paid escort come with her for her journey. At 38 weeks of pregnancy she would
have to wait in Darwin by herself until her baby came. Feeling lonely,
surrounded by an unfamiliar environment, people and food Carly was miserable.
If her 16th birthday had been a week later she would have had a
relative travel with her, be by her side for the birth of her baby and stay to
assist her with breastfeeding, travelling back with her when it was time to go
home.[13]
4.13
In all jurisdictions escorts are available for children. However,
witnesses noted that this was generally restricted to one escort per child.
More often than not, the mother travels with the child which places an enormous
burden on the mother to be the sole person accompanying the child through the
treatment and beyond. Most families wish to be together when a child is
seriously ill but must pay for the other parent to travel to the treatment
centre. This imposes a further financial burden on the family at a stressful
time. Mater Health Services provided the following example:
A patient from a regional area of Queensland, pregnant with
twins, is required to stay in Brisbane from 24 weeks gestation until the birth
of her babies who have cardiac abnormalities. She is refused a paid escort on
the basis that she is an adult and can look after herself. The family do not
have the necessary funds to pay for the escort so the patient is sent on her
own. The patient developed complications during her time in Brisbane, and
despite written communication from specialists at the Mater, was still refused
eligibility for an escort. Upon the birth of the twins who required cardiac
surgery and follow-up after discharge, the hospital would only provide one
escort, even though the PTS guidelines state that each child is entitled to an
escort. This placed more financial burden on this family.[14]
4.14
There is also a special need for both parents to be present when a child
is admitted to a hospital and is not expected to live. Princess Margaret Hospital,
Perth, commented that 'from our point of view, certainly where a child's
death is imminent, that is a crucial event that both parents need to be there
for'. However, PATS approval is not always given for a second parent to be
present.[15]
4.15
Where children have a chronic condition such as diabetes or cystic
fibrosis the presence of both parents provides the opportunity for them to
receive education on how to care for their child:
In this world of growing social complexity, quite often we are
dealing with blended families and separated parents, so you cannot always rely
on one parent being educated and then going home to the biological father of
the child and educating him. So sometimes having the flexibility to get the
second parent down is crucial for us.[16]
4.16
Princess Margaret Hospital, Perth also pointed to the problem of young
mothers (16 years of age or under) who accompany a sick child to the hospital.
The Hospital argued that given the young age of these mothers, it is essential
that they are escorted by an adult to assist them in making decisions on
treatment/consent, navigating the hospital system and dealing with the stress
of their child's medical situation. For risk management it is critical in some
circumstances to have an adult present. The Hospital has found that some PATS
jurisdictions will fund a 'second' escort in these circumstances, and some
refuse to assist.[17]
Inconsistencies in the application of escort guidelines
4.17
Witnesses commented on inconsistencies of application of guidelines in
relation to escorts. Examples were given of some patients being allowed an
escort while others with similar needs were not. This was often very
distressing for the patient without the escort.[18]
4.18
One matter raised was the withdrawal of financial support for the escort
in some jurisdictions when the patient is admitted to hospital. This was viewed
as being particularly harsh as 'the costs to the carer (and patient) do not
cease just because the patient is admitted to hospital, thereby adding to the
financial impact and additional costs'.[19]
4.19
The ANF also raised the issue of the rules regarding financial
assistance if an escort is only required for travel home. In some
jurisdictions, the escort's full journey is not subsidised:
Other issues include the lack of reimbursement for escorts to
assist patients to travel prior to surgery. If people require an escort to
travel home with them, the escort is required to pay for their travel away from
the community because only the return part of the journey is covered.[20]
4.20
There was also extensive evidence on refusal to fund escorts even though
the application may be within the guidelines. Witnesses argued that it is for
the doctor to make a decision in the best interests of the patient and it should
not be for someone who is not clinically trained to override that decision
because of budgetary or other concerns. ARRWAG commented:
A doctor makes a decision in the best interests of the patient
on what they seem to be contributing to their health care, but sometimes there
is someone else who has a budget in mind and there are constraints around a
program. So that is their prime focus rather than the actual care of the
patient. I think that is a very difficult position to put someone in – someone
who is not clinically trained, and I know they are not, to override a clinical
decision.[21]
4.21
Examples of decisions being changed by another medical practitioner were
also provided. In these instances the emotional and financial implications can
be severe. The Mallee Division of General Practice provided this case:
The patient was admitted to hospital and the specialist
disagreed that an escort was required. Two days later the patient was sent home
via ambulance and his wife, who was 78, was left in Melbourne with no way of
getting home. Because the specialist said that it was not a requirement, she
was stranded and stuck. That is not an isolated situation. It really needs to
be addressed.[22]
Improving access to escorts
4.22
Witnesses called for greater flexibility in the provision of escorts and
recognition of the benefits to patient care that an escort can provide. In some
particular instances, such as young first-time mothers and patients receiving
palliative care, it was considered that the provision of an escort be
mandatory.
4.23
In response, the Western Australian Government commented that while
extending travel and accommodation support for escorts may assist in improved
health outcomes for patients who may benefit from the presence of such a person
due to psychosocial reasons, 'the effective cost of such an initiative would be
extremely high'.[23]
4.24
WA Country Health also commented on the need to ensure that the escort
who travels with a patient is able to provide assistance and are not themselves
in need of support:
...our experience is that quite often escorts who come down with a
patient are not always the best option for that patient. The escorts themselves
are often not familiar with the city and do not know their way around hospitals,
so they are not really able to help the patient navigate through the hospital
system when they are down here. We are told anecdotally that sometimes they do
not stay with the patient and can be hard to find when the patient is ready to
return home. Often, the escorts themselves are in need of support when they are
down here, so it is an additional burden for our health services rather than a
support for the patient.
...in our experience, it is sometimes difficult to find escorts
who are more competent than the patient and who are not equally as intimidated
by the whole thing as the patient. In some cases they can be of little value to
the patient.[24]
4.25
As a consequence of these concerns, Western Australia has established a
'meet and assist' service for patients travelling to Perth for treatment and needing
assistance when they arrive. WA Country Health concluded:
It is better, in our experience, to be very exquisite about packaging the journey and making sure there are no
breaks and vulnerabilities – that everything is really well lined up and the
person is cared for, met and assisted all the way through – than it is to
simply say, 'An escort will do the job' and have two people who get lost and do
not make connections. That is our philosophy.[25]
4.26
The Northern Territory Government responded that there was a great deal
of subjectivity in who makes the decisions and how assessments are made about
escorts. To overcome these difficulties, some rules had been established but problems
still exist:
We have established some rules there. They are still fairly
light. A lot of the escort discussion is about the clinician's assessment of
the individual and their need for support when they go to another location. A
lot is left to their discretion. One of the problems is that we probably need
to be a bit more prescriptive as to what will qualify and what will not. There
is a lot of discretion in it. I have some clinicians who give everybody an
escort, and I have others who engage with the process a lot more interactively.
There are probably others who take a much more hardnosed position on it. There
is a lot of variability in there at the moment.[26]
4.27
Queensland Health argued that the introduction of automatic approval for
escorts for patients on the basis of their diagnosis would introduce inequity
of access as other categories of patients who may have similar health needs
could argue that their exclusion is inequitable and lobby for similar access.[27]
4.28
The South Australia Government stated that it recognised the importance
of emotional support to assist in achieving good health outcomes. South
Australian PATS 'provides assistance to carers who provide support in terms of
physical care of the patient as well as support for travel and accommodation
for an additional escort to act as an interpreter if needed to assist the
patient/family to understand treatment'. Two carers are available where a child
requiring medical care is under 17 years of age if the child is seriously ill
or both parents are required to make decisions on treatment options. The
Government indicated that, from available PATS data, approximately 55 per
cent of all claims have an approved escort/s.
4.29
In addition, South Australia has developed a Patient Liaison Nurse
network through the Patient Journey Initiative to support country patients and
their carers. The Patient Liaison Nurse will be a central point of contact
within health units to assist in the transition of care for individuals from
country South Australia needing to access health services locally, regionally
and within Adelaide.[28]
Conclusion
4.30
The evidence strongly supports the benefits to patients of having support
and assistance when they travel for treatment. The Committee considers that
patient assisted travel schemes should recognise these benefits through more
flexible guidelines in relation to escorts.
Cross-border issues
4.31
Witnesses raised five concerns in relation to cross-jurisdictional
travel: variations in subsidy rates and processes; limited cross-state
arrangements; determining eligibility for transient residential status; lack of
patient choice; and the inability to claim PATS if treatment is required while
travelling interstate.
Differences across the States and Territories
People are travelling and being subsidised in different ways as
they arrive in different major centres. The emphasis on the discrepancy is more
that it is not fair to Australians to have people being funded at different
levels through a scheme which is basically a Commonwealth scheme but delivered
in state and territory parts.[29]
4.32
Witnesses commented that differences across the States and Territories leads
to frustration for patients and administrative difficulties for staff. There
are differences in the guidelines for escorts, the level of subsidy for travel
and accommodation and the ability to access closer, but interstate, treatment
centres. The Cancer Council cited this example in relation to access to
escorts:
We are treating three young men for subtissue sarcomas – one is from
South Australia, one is from Victoria and one is from New South Wales. They
have all been signed off as being eligible for different levels of support
through the individuals PATS programs. It has been incredibly distressful for
one of the young men – who is 19 years old – who cannot understand why he could
not get approval for an escort to come with him while he undergoes treatment.
So there are very strong inconsistencies regarding the eligibility for specific
kinds of support.[30]
4.33
The Cancer Council also stated that dealing with the administrative
processes of different jurisdictions was 'challenging'.[31]
4.34
The Leukaemia Foundation cited difficulties dealing with different schemes:
You are already aware of the issues of the different schemes
crossing borders and what the conditions are. For instance...in New South Wales,
for every trip they make up here, they have to pay the first two nights; in
Queensland, it is the first four nights annually – so there is a variance there...
Then, of course, there is the issue of obtaining approvals.
Their process is that the patient has to get up here, and we have to get forms
signed by the treating specialist so that we can then fax them down and get
approval from their governing district; whereas in Queensland it can be all
done by the local hospital or GP prior to travel...
Then there is the issue of how long the treatment is going to
be, getting the escort approved and the various ways that reviews are done. I
have a patient from Darwin at the moment whose application was approved for two
months, and now they are asking for a letter from the treating specialist
asking how much longer it will be and what treatment is going on before they
will extend it past the two months. New South Wales varies on decisions – sometimes
they will approve it for the full period and other times they will ask for
reviews, and that review will depend on who is in the chair at the time.[32]
Interstate arrangements
4.35
When patients access interstate facilities, it is not only the
differences in the schemes but also the lack of coordination of services and
arrangements that cause difficulties. The South Australian Government noted
that there were no PATS reciprocal arrangements for interstate patients and
their carers at the national/cross border levels for travel and accommodation
assistance. Where arrangements are made, they are ad hoc solutions such as
individual negotiations between the sending and receiving hospitals on any
transfer costs or through charitable organisations providing some financial
support where people require it. The only current agreement between States and
Territories is for the reimbursement for costs incurred for admitted patient
services for residents of another state. The charging arrangement for these
cross border admitted patient services is set out under the 2003-08 Australian
Health Care Agreement.[33]
4.36
The Northern Territory Government provided information on how admitted
patient arrangements are utilised. As there are limited services to treat
cranial injuries, major spinal injuries and major burns in the NT, patients may
be evacuated to Adelaide, Sydney, Melbourne, Brisbane or Perth. About 3,081
people from the Northern Territory are cared for interstate, with the Territory
paying $25 million in 2005-06 to State Governments.[34]
Patients from the APY lands and the Western Desert access services in Alice
Springs, principally for dialysis. The Northern Territory Government indicated
that it is developing a memorandum of understanding with Western Australia on
how to enhance access for Kimberley patients to Royal Darwin Hospital, which is
closer to them than Perth, to receive care.[35]
4.37
While these arrangements are in place for hospital admissions, the
transport and accommodation arrangements remain problematic. The Ngaanyatjarra
Health Service commented on moving patients from Western Australia to Alice
Springs and then to Adelaide:
It is really hard when we bring people here [to Alice Springs
from WA communities] for an appointment and then they are referred to Adelaide.
Who pays? Northern Territory consider they are WA patients, WA consider that it
is the Territory referring them, so they are Territory patients. They are stuck
in the middle here and it is like a fight.
...It usually gets resolved with a lot of phone calls and a lot of
arguments and somebody gives in. It is never resolved nicely, it is just that
somebody gives in.[36]
4.38
A further issue with the lack of coordination of arrangements was raised
by the Tasmanian Government. Where patients have to travel interstate for
specialist services, the timing of travel was not recognised:
[T]here appears to be little effort on the part of major
mainland specialist centres to allow for the increased travel requirements of
Tasmanian patients. For example, Melbourne specialist centres appear to assume
that the travel requirements of Tasmanian patients are no more onerous than
those of patients living in the outer Melbourne suburbs. As a result, these
centres make little attempt to modify arrangements for further treatment to
take this into account.
Compounding this issue is the reluctance of some specialist
units in Melbourne to hand care back to suitably qualified Tasmanian
specialists for maintenance therapy, which places additional travel
requirements on affected patients.[37]
4.39
The Tasmanian Government went on to argue that metropolitan specialist
centres should 'critically evaluate clinical pathways' to better cater for
interstate patients.[38]
Patient choice and interstate treatment
4.40
Witnesses were particularly concerned that the PATS guidelines often do
not allow for choice of interstate treatment centre. As most PATS guidelines
restrict travel to the nearest specialist or treatment centre within the State,
patients cannot generally nominate a different city in which to receive
treatment. In a case provided to the Committee, a patient from Wentworth NSW
did not receive PATS to attend Adelaide (400 km) for treatment for Sleep Apnoea
but could if she attended a clinic in Sydney (1200 km).[39]
4.41
Where jurisdictions assist patients who seek treatment across a border,
the 'nearest service' guideline generally applies.[40]
4.42
Often patients prefer a different treatment centre as they may have family
or friends to offer support:
There are also across-border issues for people living on the
Victoria/South Australia border at places such as Dartmoor or Mount Gambier.
For example, someone in Dartmoor chose to go to Adelaide for treatment because
they had family and a support network there, but they were not eligible for VIPTAS because Melbourne is closer, meaning
that they were not travelling to the nearest treatment centre.[41]
4.43
The importance of support was emphasised by Dr Peter Beaumont from the
AMA. He noted that 'there are many situations where the social and family
issues are of such a significant nature that it is important that the people
responsible for administering the scheme need to be able to take that into
account'.[42]
4.44
Bosom Buddies also raised the issue of new radiation unit in Darwin and
the requirement for Northern Territory patients to go there rather than
southern states where they have family support. This is also an issue of
patient-choice in terms of accessing the best treatment centre.[43]
PATS and interstate travellers
4.45
A concern raised in several submissions was that patients are not
eligible for PATS if they require treatment while travelling interstate. A
number of cases of premature birth while parents were interstate were cited. The
babies required hospitalisation for several months but the parents received no
support and as a result faced severe financial difficulties.[44]
4.46
The problem of residency is particularly difficult for Indigenous
people. The Nganampa Health Council explained:
Our patients are highly transient. They could have family in the
Northern Territory, Western Australia or South Australia, and they may live
in each of those three areas at various times. We state that our PATS is only
for people who are on the APY lands at that time. I understand that in the Northern
Territory there is a requirement for a patient to have been a resident of the
Northern Territory for, I think, couple of months before they become entitled
to PATS. An issue arises, if we have booked an appointment for one of our
patients and they have since moved to the Northern Territory and have been
there for a couple of weeks, of who is going to pay to get that patient to the
appointment. They are no longer on the APY lands, so we would say they are no
longer our patient. The Northern Territory government would say: 'They are not
actually a resident of the Northern Territory; they have not been here long
enough. We are not going to pay for it.' To be honest, I guess we do not have
an answer to that. Those situations are generally dealt with on a case-by-case
basis.[45]
4.47
The Victorian Government explained that assistance is not provided to
visitors or Victorians who are visiting other areas (intra and inter-state) for
work or holidays on the basis that travel insurance or Work Cover are the
appropriate mechanisms for assistance in these circumstances. However, the
Victorian Government did note that there is a review process to cater for
Victorians while travelling:
This process allows that if a patient who is travelling would
normally be eligible for VPTAS assistance when at their usual place of
residence in Victoria, VPTAS would pay the equivalent of travel from the
patient's home to the nearest appropriate treatment location.[46]
4.48
The NT Government commented that there were issues for it to meet the
demands of patients from neighbouring States while maintaining health services
for its residents. To provide the level of access that is sometimes demanded
would require capital investment that is beyond the NT. As a result, the NT has
limited some cross border activities and encouraged jurisdictions to refer
patients to hospitals in their respective jurisdiction.[47]
Conclusion
4.49
While there was evidence that some patients seeking medical care in
another jurisdiction had received PATS assistance, on balance, there appears to
be difficulties for patients crossing borders for medical care. The differences
in the schemes create administrative difficulties for patients, health service
staff and for organisations trying to assist patients in times of crisis. The
Cancer Council Australia concluded that:
Evidence shows that cross-border complications and
inconsistencies are contributing to poor usage of the schemes and to patients
making decisions about their treatment that lead to inferior outcomes.[48]
4.50
Witnesses called for greater coordination. The Country Women's Association
NSW argued that the anomalies created by different criteria and administrative
arrangements between states be reviewed, and recommended that this be addressed
by a national minimum standard.[49]
Other witnesses considered that as it is not uncommon for patients to cross borders
for treatment, the Commonwealth should administer PATS to ensure that equitable
access to assistance.[50]
4.51
The Committee considers that there is a great deal of scope to improve coordination
of cross-border arrangements. In this regard, the Committee considers that
greater coordination in relation to administrative arrangements will provide
benefits to both patients and health service staff through decreased paperwork
and complexity of procedures.
4.52
Patients should be provided the option to access interstate services if
these are the closest or provide the most appropriate care. There should also
be flexibility in the schemes to allow patients to access facilities where they
may have family or friends able to provide support – in the long-term this may
provide cost savings for jurisdictions as there is significant evidence that
support assists patient well-being.
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