Travel and Accommodation Assistance for Users of Health and Disability Services

A Summary of Community Feedback

to the HFA consultation

Prepared by: The Travel and Accommodation Project Team HFA Christchurch Office November 2000

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DRAFT POLICY..............................................................................................................3

INVITING PUBLIC VIEWS.............................................................................................4

ANALYSIS AND REPORTING OF THE RESPONSES .............................................5

COMMENTS ABOUT THE CONSULTATION PROCESS........................................5

WHO GAVE FEEDBACK?............................................................................................6

COMMENTS ABOUT THE POLICY AS A WHOLE...................................................7

MAJOR THEMES ...........................................................................................................7

THE PRINCIPLES.......................................................................................................1010

REFERRAL..................................................................................................................1111

DEFINITION OF SPECIALIST SERVICES ..............................................................1211

DEFINITION OF A CHILD..........................................................................................1212

TRAVEL .......................................................................................................................1312

SUPPORT PEOPLE...................................................................................................1515

ASSISTANCE FOR SUPPORTERS OF INPATIENTS ..........................................1717

PAYMENTS .................................................................................................................1817

DISCRETION...............................................................................................................1918

OTHER ELIGIBILITY CRITERIA...............................................................................2020

ADDITIONAL ISSUES RAISED ................................................................................2120

APPENDIX...................................................................................................................2322

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The need for a nationally consistent Travel and Accommodation Assistance Policy for users of Health and Disability Services

In late 1999 the Health Funding Authority undertook to review the travel and accommodation assistance policies of the four regions in an effort to develop one nationally consistent policy.

The purpose of the review was to “address inconsistencies and gaps in current coverage” and “make the purchasing/provision and costs of providing transport and accommodation assistance more transparent, contributing to the Crown’s goal of public certainty about access, quality and security of services.”

Policy development and consultation The project team established two advisory groups to work with the HFA one representing the Hospital and Health Services (HHS) sector, and the other representing key stakeholders and wider public interests.

The regional policies were compared to identify the current differences, and key issues and difficulties were identified from informal submissions from the sector and in work with the advisory groups. A draft policy was developed, and then taken out for public consultation. The consultation included formal submissions, public meetings and focus groups. This “Summary of Feedback” presents the views of those that attended meetings or contributed to submissions.

Draft policy

The draft policy, “Consultation Document on a nationally consistent Travel and Accommodation Assistance Policy for users of Health and Disability Services” was released on 1 August 2000, with associated media releases.

The document was sent to over 1500 health groups around the country. In addition, pamphlets promoting the consultation and draft policy were sent to Citizen Advice Bureaux and Disability Resource Centres. Additional copies of the document were available from the HFA 0800 number, and on the HFA website.

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The consultation document identified the principles informing the policy, detailed the inconsistencies between the travel and accommodation policies of the four regions of the HFA and the ‘expenses to attend treatment’ policy of the Central region, and outlined a draft policy for the whole country. The document took the reader through the proposed policy step-by-step and asked a series of questions about aspects of the policy. A submission booklet in each copy of the discussion document listed the questions in the discussion document with space to write a response.

Inviting public views The views of the public were sought in three ways.

1. Public meetings

Twenty-two public meetings were held throughout the country, in a various sized communities, ranging from large cities, to communities with regional hospitals and those with no local hospitals offering specialist services. (See appendix 1)

These meetings were advertised on the HFA website, in newspapers, and on Iwi and Pacific Island radio in some communities. In addition, somecommunity groups promoted the meetings in their communities and/or to their membership. Several communities expressed dismay that public meetings were not being held in their area, and some meetings additional to the initial plans were arranged in response to invitations.

2. Focus groups

Fourteen focus groups were held with communities or groups known to have particular concerns with the policy. These were held in various locations around the country and included social/cultural groups and groups with particular health interests (see appendix 1).

About 1000 people attended the public meetings and focus groups. Notes were taken at each meeting and the themes and issues raised are included in this report.

3. Public submissions

Public submissions were invited and 346 received. The closing date was 30 September, but those received prior to 26 October were included in this analysis.

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Analysis and reporting of the responses

Written submissions came in various forms – posted, emailed and faxed, with many using the submission booklet as a template. Some included small research projects undertaken to elicit patients views, others attached reports pertinent to the consultation. All were read.

The submissions were analysed, with the assistance of a database, to identify the main themes and patterns of responses. Most of the questions in the submission booklet were open ended, and many respondents made general comments throughout about the proposed policy and the current experience of travel and accommodation assistance. Many submitters did not answer every question. Many submissions, although written by one person, were contributed to by several people, and many that made submissions repeated their concerns several times in one submission, often linking comments with one another. This means counts of numbers holding particular views would not be meaningful.

Equally, the views expressed at public meetings and focus groups were not necessarily the opinions of all who attended a particular meeting. The notes from the meetings are included in this report. The intention of this report is, therefore, to summarise the responses from the groups and written submissions, presenting the pattern of opinion and the main themes that emerged from the consultation process.

Comments about the consultation process

Comments were made about:

?? the underlying intention of this consultation – which was suspected by some to be to save money or close hospitals.

“This exercise must not be seen as an opportunity to reduce overall expenditure on travel and accommodation – rather it must increase it. Under any new policy the minimum assistance for all must equal or exceed the maximum available under the old policies in any case for equity.” (Community health group)

?? the make-up of the Advisory Group – too narrow, needed to represent the elderly and rural communities, and asking who the individual members were

?? comments about the document .

“Well researched discussion document.” (Community health group) ”Thorough, thoughtful and written in English as opposed to managerese.” (Community health group)

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“The policy draft is difficult to follow and seems to have some contradictions.” (Health services manager)

?? scanty publicity or short notice, which meant community groups and individuals

were unaware of or unable to attend the consultation. ?? cultural issues surrounding some meetings including lack of Maori representation

at a meeting ?? some meetings were perceived to be set up as an afterthought ?? the likelihood that a new policy would not be consistently followed through with

impending new structures

“Decisions made about this policy could be re-interpreted by incoming District Health Boards.” (Local government) ”…the HFA is being replaced by twenty-one funding agencies, which we believe is a recipe for

disaster.” (Community group) Positive remarks about the policy, consultation document and process, outweighed negative remarks.

Summary of Feedback This summary includes the main ideas and themes from the meetings and the written submissions. The feedback from the meetings and the submissions raised similar issues and concerns.

Who gave feedback?

The total of 36 meetings and focus groups were held around the country and attended by about 1,000 people. The 22 public meetings were for anyone interested, the 14 focus groups each included a specific group such as Maori, Pacific Island people or people with a focus on mental health, neonates, organ donation and other health areas (appendix 1). Three hundred and forty six written submissions were received. Most were from representatives of groups or organisations, the rest from individuals. The groups were mainly community health groups while the rest were evenly divided into general community groups and non-government health organisations, with a small number of local authorities sending submissions. Some submissions were made jointly by two or more individuals, while many noted that they were the result of discussions with patients or members of an organisation.

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More than a third of the submissions identified a personal health focus, about a third had a general rather than a specific health focus. Of the remainder, about a quarter had a mental health focus, and the rest a focus on disability support. Submissions came from a wide geographic area – cities, small towns, settlements, and rural areas throughout the North and South Islands, Waiheke, Chatham, Stewart and Great Barrier Islands.

Comments about the policy as a whole

Many agreed that a nationally consistent policy is needed and were positive about the proposed policy.

Some approved the principle of one consistent policy but had concerns about specific groups.

“...however we do not believe the suggested criteria adequately address the specific needs of many people with disability.” (Community health group)

Others disagreed with the policy as a whole “I do not agree with your proposed criteria…it is discriminatory and in my opinion breaches the Human Rights Act based on your proposed criteria and the existing situation in Horowhenua.” (Individual)

Some expressed concern about inconsistencies between health and disability support services and suggested that the definition of disability should include disabilities resulting from ill-health such as cancer, renal, heart disease etc.

Major themes

Certa in themes or concerns were common to meetings and submissions. Comments often related to experience of what works or does not work in the current situation, rather than to the proposed policy. Many themes and ideas were linked. The main themes are summarised here. Other responses are listed later in this summary.

The most frequently mentioned concern was barriers to access to services, particularly hardship. Hardship was linked to a number of issues. Access was a concern for Maori and Pacific Island people.

Means testing for eligibility Effective means testing was acknowledged to be difficult to implement. The proposed use of the Community Service Card (CSC) was recognised by some to be a convenient means test. The High User Card (HUC) was suggested as an additional measure, but many felt that the CSC was not a

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good measure of income nor was income a good measure of financial hardship or need for assistance.

“While the CSC is a guideline, it is only a guideline to income, not to need. As long as it remains in place it will be unfair to some people.” (Hospital social worker)

Many felt that any form of means testing was discriminatory and that clinical need should determine eligibility. Associated was the comment that people should not be disadvantaged by where they happen to live.

”We believe that everybody attending publicly funded treatment in another town/city shouldn’t have to qualify and be in the right place to be offered travel and accommodation assistance. This part of treatment is very necessary and for people to have to qualify by having a CSC or HUC is causing a demarcation between the haves and have-nots – health is not like that.” (Hospital nurse) “Assistance should be based on the need for outside clinical treatment rather than their personal financial circumstances.” (Community group member)

Large families, people with financial commitments, farmers and small business owners were all seen as potentially disadvantaged by use of the CSC as a means test because they might not be eligible for a card, but that calls on their income, and the need to hire in help while away for treatment, would effectively reduce their income.

Entitlement

The issue of rights was brought up both in the meetings and in submissions.

“There should be no eligibility criteria, there should be no limitation of travel.” (Community group) “I believe the CSC should not be part of the eligibility criteria. There are many people who have these and have other undisclosed means of income. If a person needs treatment they should have it regardless. We have all (most of us) paid taxes for all our lives, therefore we should be entitled to tax funded services.” (Community group) “We are being forced because of government policy to undergo the stress of financial and social dislocation in order to access healthcare…. we should all be paid for it – in total.” (Community health group) “...submission is based upon our belief that the removal of so many health services from rural areas as well as from small towns throughout the country has had an adverse impact on people’s access to health services.” (Community health group)

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Rural issues

Rural areas and areas where there was poor public transport were frequently mentioned as affecting access to services. Some areas were seen to be characterised by communities on low incomes. The poor state of the roads, difficult terrain, or certain weather conditions made travelling difficult to organise, slower and return trips in a day impossible even with private transport. In some cases a day return was impossible, or made so by early or late appointments, with resulting accommodation costs.

“In our area (East Coast) there are people with no vehicles, and no taxi service exists. So giving people money does not always help.” (Individual)

“We would like to see a person’s need for travel assistance based on geographical location taken into consideration. Some geographical locations in relation to locations of specialists contribute to disadvantagement of clients. Also lack of transport systems in some remote areas.” (Hospital social worker)

“In most provincial centres public transport is not very well developed, and typically hospitals are not located near the transport hub.” (Health service manager)

A number of rural areas identified as having poor or no public transport were described as being characterised by communities of people on low incomes.

Some urban areas too, were described as having poor or inconvenient transport arrangements which, combined with the fact that they comprised large communities on low incomes, made attendance at specialist services difficult for many people, with frequently missed appointments.

Implementation

Implementation of the policy and especially awareness of entitlement to assistance was frequently noted as essential to ensure equitable access to specialist services. Comments from community organisations spelt out the lack of awareness of members that any such assistance was available, and the fact that it was not always offered, or that implementation of the policy (local to their region) in the past had not always been consistent. This national consultation was reported to have had the effect, in some areas, of increasing applications for assistance. There were many suggestions about how to prom ote and implement the policy, in the future, to improve access.

“Until a meeting for submissions on travel and accommodation took place I had never set eyes on a pamphlet, Never once in hospital either.” (Individual)

Suggestions for improved awareness included:

?? someone in each medical centre (e.g. ward staff, outpatient receptionists) should be aware of assistance

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?? a pamphlet and clear claims forms aimed at a reading age of nine ?? make claims forms available pre-visit ?? training such as workshops for services whose patients use the assistance ?? publicity ?? word of mouth promotion for Maori, and Pacific Islands people ?? 0800 number

“People referred for help in other centres are often so grateful for a referral they just assume they are liable for the associated costs – and often a referral is a response to an emergency or acute situation and people just manage at the time.” (Community health group)

Reimbursement was raised as an important factor in implementation. Some suggested an advance payment was necessary for a person to attend an appointment in the case of financial hardship. Others commented that payments should be speedy, prompt and retrospective if patients qualify over a period of time.

“When a person has a terminal illness, waiting for months for payment to reimburse support people adds to their stress.” (Individual)

Monitoring and controlling costs.

Many were very conscious of the cost of providing assistance and having a fair way of managing the process. Suggestions ranged from capping reimbursements to paying the travel costs only when the person arrives at an appointment. A number of submissions commented on the cost of such a policy and the need for clear guidelines to control expenditure.

“At the end of the day there is only so much money available. It needs to be used wisely and target as many users as possible.” (Community health group)

Others commented that such a policy would need to be administered centrally, or from one central source for medical, surgical or disability, to maintain consistency. In contrast some felt such a policy should be administered at a local level for speed of processing and flexibility.

The principles

Many respondents made positive comments about the principles. “We have no additions or changes to make to the principles which seem admirably clear and to the point.” (Social Worker)

Some felt the principles were undermined or even contradicted by the eligibility criteria, particularly means testing, and that a person’s clinical need should be the guide.

“Some of the qualifying criteria appear to contradict the spirit of the principles.”

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(Community health group)

The cost of implementing such a policy was seen by some as a stumbling block to access.

Many comments referred to special groups. Most accepted that childrwere a special group, while the elderly were most frequently mentioned as having special need for support. It was pointed out by some that everyone needs support which is part of the healing process.

Some thought cultural sensitivity should be built into the principles – Maori, for example, need a support person as many are reluctant to use specialist treatment through fear. Cultural sensitivity was a concern for Pacific Islands people as well.

A number of other groups with special needs were mentioned including mental health consumers and dialysis patients.

Other comments covered:

?? the need to be sensitive to social and emotional impacts ?? hardship ?? various aspects of the policy

Referral

More were in favour of the proposed referral process, than against. Feedback from groups and submissions included:

?? GPs and primary care givers should be able to refer, particularly in rural areas, and emergencies after hours. Some added that this would ensure the first visit would be covered for assistance.

?? other (named) health professionals/workers should be able to refer, ranging from people such as Tohunga, psychologists, dentists, podiatrists and nurses to support group co-ordinators and school for the deaf. The 3-month residence criterion should be dropped as it disadvantages people who tend to be mobile, those moving home, and those moving to be nearer treatment.

Other comments were:

?? that people referred by private specialists into the public system, or to private specialists through lack of available specialists in the public system, should be eligible for assistance

?? suggestions about implementation such as setting up a speedy process for assistance.

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Definition of Specialist Services

Most were happy with the definition of a specialist service although it was seen to need a clear definition. Suggestions about what other services should be defined as specialist included:

?? HFA-funded providers ?? mental health and physical or sensory disability needs assessments ?? services such as respite care ?? dialysis learning ?? screening, health educators, and services such as sexual health services for

young people in rural areas ?? mental health case managers, to improve access for consumers in rural areas,

and day programmes, residential treatment and vocational assessment programmes for mental health consumers. Some of these are available for alcohol and drug services

“Day activity groups are an essential part of active management for mental health services.” (Community health group)

?? anyone other than a GP who provides a medical service required by a patient, or in some cases a GP who has specific expertise

“Needs to include early intervention, preventative services and family-centred services: regional genetic, liaison psychiatry, neurology, dental, speech-language. As more intervention/assessment is included as out-patient or day-patient services there is a need to include these. Are they primary care or community services?” (Community health group)

?? some felt allied services should not be included.

In addition, some commented that it was cheaper for one specialist to travel than several patients.

“There should be emphasis placed on outreach care where a specialist travels to a smaller centre rather than families travelling to a tertiary centre.” (Hospital service)

Definition of a child

Most accepted using the 18th birthday to define a child although some qualified this. The most common response was to include people or young adults who were dependent for various reasons

?? intellectual disability (the most common response) or physical disability ?? psychosis or an anxiety disorder ?? young people who have received treatment for cancer as a child and later

become terminally ill, wishing to access the same medical personnel ?? a student, either secondary or tertiary, up to the age of 25

There was a range of other suggestions including:

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?? aged people and adults with mental illness or with disabilities should have the same entitlement as children

?? 18 rather than the 18th birthday ?? pregnant women who have to be transferred and mothers under 18 ?? various ages such as 16, 20, 21 ?? excluding young people under 18 in full time employment ?? making the age definition consistent with child and Adolescent Mental Health

Services which cover 0 – 19 years

Travel

More were in favour than against the criteria for infrequent and frequent travel. Some questioned whether the 400km distance was a one way or return trip. Many people saw 400km as too far while fewer supported it.

Comments were made about distance, frequency, hardship, groups affected by the policy and rural issues.

Distance Like other issues, the impact of distance does not stand-alone. Some said need, not distance, should determine eligibility. The effect of the distance criteria was seen to relate to availability of public transport, income, and the age and state of health of patient and supporter. In greater Auckland distance may not qualify a person for assistance but elderly people with particular health problems find public transport exhausting and stressful. The long distance criterion of 400km evoked strong feelings. Comments included:

?? reduce the 80km and 50km distances to various levels down to 10km ?? the 10km distance for children would exclude high need children who up to now

were automatically eligible for travel and accommodation assistance ?? 400km should b e reduced to various levels ?? distance does not take into account the number of rides needed on public

transport ?? disagree/agree with differentiating distance for frequent and infrequent travel ?? time, not distance should be the measure ?? cost, not distance should be the measure ?? size of the community should determine the criteria ?? someone who does not meet the criteria and has to travel 350km could incur

accommodation costs for two nights ?? it is unfair when parts of a small town fall within the criteria and other parts do not

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?? certain parts of the country have particular problems – where ferry or air travel is required and cost is disproportionate to distance

?? the problem of working out distance on the basis of rural addresses ?? condition of roads should be taken into account

Frequency Comments about frequency of travel included:

?? six visits in three months should be 12 in 12 months or six in six months ?? a compilation of 12 visits in 12 months to the GP or specialist ?? six times in three months does not cover all chemotherapy regimes which may

disadvantage people on low incomes ?? criteria need to be tight and well-defined ?? specialist cannot always predict how often someone will need to attend ?? three times weekly should be reduced ?? some people stay near the hospital and return home at weekends to reduce the

amount of travelling, incurring costs ?? a person should not have to attend six times before reimbursement ?? attendance should be cumulative for a person attending more than one specialist

service ?? for more than one family member travelling to treatments this should be

cumulative for the family ?? would exclude children attending early intervention centres less than three times

a week ?? once a person with a specific condition qualifies they should stay eligible even if

frequency changes. Other comments were:

?? suggestions to lower the rates for travel over the sea in some areas as the quoted rate is too generous

?? need to expand and clarify the definition of specialist transport ?? specialist transport may be required for people with no support person who

cannot drive (disability or impairment), or who have a brain injuries or a mental health problem.

Groups affected

A number of groups were seen to be disadvantaged by the travel criteria, particularly those who tend to be on low incomes, but a lso:

?? groups of patients such as people requiring dialysis, mothers of babies in intensive care, long term chronically ill children living in a major centre

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?? children who currently get a Child Disability Allowance automatically get travel and accommodation assistance in some areas. Under the new criteria they will lose the assistance.

?? renal and pancreas transplant patients who already face huge costs ?? people with mental health conditions under community treatment orders which

are compulsory ?? Maori, ethnic and refugee communities who tend to be on low incomes ?? older people, especially those with no car or relatives to assist with transport

Rural issues Comments included:

?? the frequency criteria are prohibitive for people in rural areas ?? lack of, or irregular public transport, this applies in some urban areas too ?? the presumption that everyone can drive ?? time of appointment affects ability to return home in a day ?? nature of terrain, roads and weather can make rural travel arduous and slow ?? certain rural communities were predominantly Maori who were already

disadvantaged

Support people

Some felt that discretion (of clinician, social worker) should determine when two supporters were required on a case-by-case basis, particularly when cases do not fit neatly into the criteria. This issue was particularly important for Maori and Pacific Islands people. A few did not agree to more than one support person.

“Generally speaking more than one support person is unnecessary.” (Individual) Children Children were agreed to require two support people, usually their parents. In some cases conditions were added such as age, severity of illness, chronic illness, transplant, or disability. A number mentioned neonates.

“When a patient is a child both parents should receive travel and accommodation assistance. It is virtually impossible for one parent to cope with the care of their child, decisions to be made on treatment etc. In some instances it is not possible for both parents to leave home especially in the case of self employed Dads who must keep the business going. It would be reasonable therefore to expect the Mum to be able to take another family member as the second support person.” (Community health group)

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Linked to children were comments about the need to keep families intact, possibly allowing travel back and forth or bringing along other children, for example where there were other children at home, when the mother was nursing a baby, or in the case of certain medical procedures such as transplants. Patients with disabilities Patients who were frail or with disabilities were suggested by many to require two support people. This included people with intellectual and physical disabilities, hearing and sight loss and the frail elderly. Practical reasons were given such as the need to assist with transfers, when travelling with a person with disabilities the driver would need another support person present, and when there was a formal caregiver provision for a second support person would allow a family member to be present. Associated with this were people who had a carer who was frail or had a disability and would require a younger person such as a son or daughter for support. Clinical considerations Clinical considerations were frequently suggested as qualifying a patient for more than one supporter, particularly terminal illness but also chronic illness, brain injury, haematology, intensive care, prolonged treatment where one carer may need to return home for a break and be replaced by another or where:

“Some family memb ers and caregivers are part of the treatment plan for their family member.” (Community health group)

Many thought acute or crisis admissions required two supporters. This included accident victims, medical crisis during attendance at treatment, a patient with challenging behaviour or a psychiatric admission where the person is in a disturbed state. Cultural needs Cultural needs were mentioned by some – Maori, Pacific Islands people and other cultures with extended family systems meant a “one support person” rule was often inappropriate.

“When crossing iwi boundaries sometimes kaumatua/kuia are required to attend.” (Community health group)

“For Maori Whanau support can be crucial and include (for example) spouse /parent and/or brother/sister or for a child, parent(s) and grandparents(s).” (Maori group)

Other comments were that two supporters were required:

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?? when travelling from a rural area ?? for carer training ?? when flying ?? when a translator is required but cannot be organised by the provider ?? in all cases The 14 day admission period

It appeared that a number of submitters did not realise that the category of support for patients in hospital for more than 14 days was additional to the other eligibility categories that also provide assistance to support people of inpatients. A 14 day admission period before assistance would be given to supporters was seen as unrealistic when many admissions are shorter nowadays. This rule was “not in line with current medical and surgical treatments.” A submission quoted the average medical/surgical stay as 2.5 nights. Early in the admission was when support was needed especially in emergencies but also for many special groups.

“Fourteen days does not adequately reflect people’s needs. Mental health unit consumers have an approximate turnaround time of seven – 10 days under the new system.” (Maori mental health group) “Maori would find it difficult to accept the lack of support for 14 days as an in-patient.” (Maori organisation)

Time of admission, time of diagnosis, emergency transfers, family meetings, dialysis training were all given as examples when a supporter would be needed. Some suggested seven days was more realistic, others suggested from day one, or using guidelines according to the severity of the illness. Conversely long stay situations such as the Spinal Unit at Burwood Hospital imply the funder would be committed to providing very long-term assistance to supporters. If the patient was in hospital for longer than 14 days, would the supporter be reimbursed retrospectively.

Assistance for supporters of inpatients

Comments varied from the need to control costs and that only travel and accommodation should be covered, to the need to cover everything. People said supporters needed:

?? travel, accommodation, taxis, parking, phone calls, meals ?? assistance to pay for childcare ?? dedicated hospital transport ?? advance payments ?? all actual expenditure ?? a review of the 20c/km reimbursement rate

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“20c/km would not cover much. This is really a tokenism and really offensive.” (Individual) Other comments were:

?? the current lack of assistance home for a supporter travelling with a patient to another hospital by ambulance

?? the right to assistance if the person is required to travel because of arrangements made between hospitals

?? the high level of costs travelling locally home and back several times a day ?? the cost of driving someone a distance such as Northland to Auckland for

treatment and then returning to fetch them ?? the extra cost if the supporter travels from a greater distance away than the

patient.

Payments

Comments about reimbursement of costs ranged from the opinion that everything should be covered, to concern that the system could be abused and that payments should be capped or controlled. A number commented on experience of motels raising their costs when they discovered the HFA was paying. Suggestions were:

?? exclude various or all additional items, particularly meals. Some costs such as phone calls were seen to be hard to monitor.

?? put a daily ceiling on specific items such as accommodation or food ?? identify preferred providers such as motels near the hospital and contract them at

a fixed rate ?? meals at the hospital (although some commented that certain hospitals were

expensive) ?? encouraging the use of public transport or walking

Most commented that actual costs of accommodation should be reimbursed while others were divided between providing a set amount or allowing higher costs for main centres. More than half the submissions ranked the importance or recognising other costs associated with travel away from home for care. Meals and parking were seen as priorities. Many commented on the 20c/km allowance being inadequate. Other costs that should be considered were:

?? laundry allowance, childcare ?? airfares ?? reimbursement of relatives or friends for private accommodation

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?? a rental car if no public transport available

Discretion

There were positive comments made about the fact that the draft policy allowed for discretion. The main situations in which discretion should be used was felt to be in cases of hardship, clinical considerations, and for special groups. Some felt that discretion should be used on a case by case basis for everyone. The use of discretion was seen by some as potentially problematical, being unfair, lacking transparency, creating inconsistencies between hospitals, and favouring the ‘squeaky wheel.

“There needs to be an explanation of what the boundaries are. Anecdotal evidence shows that discretionary powers have been used to the detriment of the patient and support person. This should be avoided at all costs.” (Community group)

Hardship Comments were made about people without a CSC but clearly suffering hardship, which is likely to affect access to treatment. Examples included:

?? one income families ?? small or sole charge business owners who had to pay someone to run their

business while away ?? farmers who were asset rich but on low incomes ?? people with long term or terminal illness that affects their earning ability ?? where the treatment regime requires frequent visiting ?? where the patient is unlikely to attend treatment unless they receive assistance ?? those ineligible for assistance from other government agencies ?? sudden and unexpected need to travel ?? clinical considerations ?? families with low incomes and high demands, such as:

“Family income exceeds CSC criteria but disposable income is very limited due to mortgage, multiple children, blended families” (Community health group)

Situations were described in which certain clinical situations required the use of discretion in providing assistance to travel. These included:

?? crisis, emergencies and trauma ?? terminal illness, particularly a dying child ?? multiple family members receiving treatment ?? psychiatric conditions and dementia ?? when family members need to be involved in the treatment ?? rare or congenital conditions

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?? when the criteria are not met but a 24 hour support person is required ?? a clinical decision based on need

Some responses suggested that certain groups of people were more likely to need discretionary assista nce. These included

?? people without a CSC from remote areas and with chronic conditions ?? organ donors and recipients ?? certain age groups (over 75, 18-24) particularly the elderly ?? mental health patients needing to go home on trial leave, or with high levels of

need ?? cultural sensitivity as to when to apply discretion ?? refugee groups without the resources for frequent hospital visits ?? dialysis patients

Other comments were about:

?? the special problems for people living in rural areas where public transport is infrequent or non-existent – this also applied to some urban areas. Return trips to a specialist within a day were not always possible with the resulting expense of two overnight stays. Sometimes neighbours would assist with transport. These people should be reimbursed.

?? family circumstances such as a mother needing to travel to breastfeed her baby, family involvement in mental health or alcohol and drug treatment, keeping children and parents in touch with their families, paying for a relief carer for other children when a sole parent is away.

?? borderline situations where a person just misses out on the CSC or other criteria but there is a clear case of need

Other eligibility criteria

Some commented favourably on the eligibility criteria. “These seem very reasonable, criteria must be as quantifiable as possible to avoid favouritism/discrimination or a perception of the same by the public.” (Community health group)

Many pointed out problems with the proposed criteria. There was much concern that the CSC was inadequate as a means test and that other criteria should be taken into account:

?? cultural needs

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?? family issues such as having to provide child care for other children or an elderly parent at home, particularly in the case of single parents

?? the state of health, trauma or dependency of the patient ?? the disease or condition requiring treatment ?? length of illness ?? total time spent away from home ?? referral as a result of screening

Additional issues raised

Boundary issues Some commented on the fact that there were unclear areas

?? need to state what this policy does not cover ?? ACC travel support not understood by patients or health workers ?? what WINZ and travel and accommodation assistance cover ?? inconsistencies between what assistance patients received through ACC and

through the travel and accommodation Policy ?? Total Mobility Schemes and travel and accommodation ?? overlaps between local authority transport responsibilities and those of health

Policy

?? Outreach Clinics have developed in an ad hoc fashion and have sometimes been funded out of the travel and accommodation budget. Need a consistent policy for development of outreach clinics

?? centralised services more viable than outreach ?? travel and accommodation budget currently being fragmented into different types

of funding (emergency, inpatient travel and accommodation, outpatient travel and accommodation, outreach clinics)

?? private hospitals should be responsible for transporting patients in their care ?? specialist service should always be the nearest funded provider ?? need a definition for “a reasonable length of time” to wait for shared transport ?? the need to recognise and support the role of a support person ?? must acknowledge it is sometimes necessary for whole families to travel, or

recognise the disruption to family life and additional support necessary if some are left at home

?? screening programmes should have access to travel and accommodation assistance

?? mental health consumers should receive their fair share of subsidies ?? first appointment to a specialist service needs to be funded ?? need for support for adult patients inadequately recognised ?? who pays for the return of the body when a patient dies?

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Administration

?? who will manage and police delivery of assistance ?? should be administered centrally ?? access 24 hours a day, seven days a week ?? who will be fund holder, fund manager, who will hold the risk ?? the process of auditing the proposed system is not clear ?? need a formal appeals process ?? audit for national consistency

23

Appendix 1: Location of meetings

Public Meetings

Westport West Auckland Christchurch South Auckland Kaikoura Whangerei Wellington Thames Blenheim Hamilton New Plymouth Wairoa Wanganui Gisborne Palmerston North Whakatane Dunedin Alexandra Balclutha Oamaru Invercargill Levin

Focus groups

Transplants (liver and bone marrow), Hamilton Cancer, Wellington Children with long term illnesses/conditions, Auckland Renal, Auckland Cardiac, Christchurch Disabilities, Wellington Mental Health, Christchurch Low socio-economic, Timaru Neonate, Hamilton Pacific Island community, Central Auckland Maori, Kawakawa Maori, Auckland Maori, Hamilton Renal and transplant, Christchurch

24

Appendix 2: List of submitters

Organisation Individual Town/City

Meg Hills WhakataneWaihi Community Care Transport Section

Alan Bailey WaihiSPAV-NZ Mervyn J. Castle WellingtonAge Concern Otago D.J. Henry DunedinSouth Auckland Health Alistair Ayto AucklandNational Testing Centre Dianne Webster, Christine

McMahon Auckland

Waihi Hospital Cheryl Atherfold WaihiCommunity Nursing Anne Parkes TuamarinaHauora Whanui Peri Whiur Bay of IslandsCoast Health Care Margaret Smith GreymouthNelson Malborough Health Services

Loraine Cain NelsonHealthcare Otago Judy Firestone Dunedin Anne Bogle East Coast Ruth Flavell Flat Bush B Casey LevinPacific Island Advisory & Cultural Trust (Inc)

Meke Lome InvercargillEpilepsy NZ Sandy McKirdy TimaruCARERS NZ Julie Lowe CambridgeGrey Power E G Manderson WhangamataHuntingtons Disease Assn (AKL) Inc

Beth Gordon AucklandHealthcare Otago Cassandra Stornoway DunedinGrey Power Southland Geoff Piercy Les Johnson MastertonGrey Power Twizel Inc G D Harraway Twizel 8773NZCCS Nelson Liz Collyns Blenheim Neville Arps TwizelCountry Women's Institute Dorothy C L Hey Central OtagoNational Council of Women Brenda McLay Southland Eric W Belcher Greymouth William Franklyn Jessen Kevin Axten New PlymouthCancer Support Jeanne Beattie OpotikiGisborne/East Coast Multiple Sclerosis Soc Inc

Jacky Crothers GisborneHeart Children Dunedin Nikki Hosking DunedinDiabetes North Otago Jan Nath Oamaru Kathy Simmons ChristchurchMuscular Dystrophy Assoc of NZ

Peter Kennedy-Good Auckland Pam Donaldson Oamaru Unknown Mise Tamatoa Auckla Judith Maloney WanakaRural Women NZ Ruth Rivett TapanuiIronside Vehicle Society Inc A L Squire New Plymouth

25

Organisation Individual Town/City

Child Cancer Foundation Deanne Corps Wanganui R N Donnelly Auckland Alan Bottoms KawerauNelson West Coast Multiple Sclerosis

R Sigley Motueka Kyran Payne TaranakiHorowhenua District Council

Transport Subcommittee Levin Laurie Burdett Taupo Walter G Amor LevinMackenzie Medical Trust Peter Bell FairlieGrey Power Kaipara M D Matich DargavilleNelson Marlborough Health Services

Susan Lockhart NelsonWairarapa Health Ltd Debra Sedgwick MastertonTHAW Cindy Carmichael Christchurch Keith Armstrong Auckland Porirua Citizens Advice Bureau Inc Wellington Ray Hays OpotikiBurwood Hospital Patrick Doyle ChristchurchNational Council of Women South Canterbury

Priscilla Maclaurin Timaru Elaine Bycroft Thames Lesley McIntosh OamaruPerinatal Society of New Zealand

Rita Teele ChristchurchAge Related Services Ailsa Bailey Timaru Schizophrenia Fellowship InvercargillRodger Wright Centre Dale McKinley ChristchurchWestland District Council R Gugich HokitikaStarship Hospital Lynne Campbell Auckland Judith Dumper AucklandSchizophrenia Fellowship John Bayley RotoruaGrey Power Central Otago John & Jacqueline Goyen AlexEastern Bays Hospice Trust Joan Monkton AucklandNational Womens Hospital Jocelyn Hewi AucklandWidows & Widowers Assoc Inc. NZ

Thelma J O'Sullivan Auckland Eleanor Jillings Invercargill Karen Hamilton Greymouth William Brown Papakura Friends of Children in Hospital Dunedin Lennox Fox Levin Doug LevinKids with Arthritis Angela Wadham Auckland H Mary Martin TaranakiConsumers Advisors Network Healthcare Otago

Leueen Tohill OamaruTe Huarahi Ki Te Oranga Pai

Hera Low InvercargillRWNZ Aileen Davies Palmerston NorthNorthland Mental Health Trust

Jae Oldbury Whangarei Mr B Adams OpotikiCoast Healthcare Jan Murphy Westport

26

Organisation Individual Town/City

Te Awa O Te Ora Trust Sharleen Baird ChristchurchBone Marrow Transplant Trust

Allison D Nicol ChristchurchKidney Kids/Comfort Coalition

Maureen Anderson Palmerston NorthSF West Coast Margaret Wood Westport Sharon McDougall AucklandCCS Local Advisory Committee

Kim Willetts Oamaru Lena Adams TaranakiWestern Bay of Plenty Branch of the Post Polio

Ace Neame TaurangaEastern Southern Grey Power Wellington

Mary Mathews wellingtonLakeland Health (HHS) Jeff Vaughan Taupo Jill Altman Otago W Knowler Southland 9655Ashburton Cardiac Companion & Support

Elva Skinner AshburtonPaeroa Volunteer Drivers Committee

V Sparks PaeroaOtorohanga District Council P F Corboy OtorohangaNZ Foundation Blind Advisory Committee

Pat Wikstrom LevinSchizophrenia Fellowship Barry Gibbons AlexandraAge Concern Manawatu Committee Palmerston NOzanam House Trust Anthony Finnigan Palmerston NorthChild Cancer Foundation Kay Morris AucklandCardiology/Cardiothoracics Natalie McDonald ChristchurchOtaki Memorial RSA (Inc) Christian Andersen OtakiCaring for Carers Anne Turner ChristchurchNZCCS Manawatu L J Mckee Palmerston NorthSthn King Country Community Health

David Hay Taumarunui Malcolm Giddy New PlymouthArohanui Hospice Service Trust

Mervyn Monk Palmerston NorthNelson Marlborough Health Services Ltd

Jim Huggins, Carolyn Lock Nelson Josephine Moller AucklandBreastcreen Coast to Coast Ann Shaw Palmerston North William White Hatfields BeachTaupo Volunteer Transport Group

B Forbes Taupo J M Bindon Whiritoa Rural Women New Zealand WanganuiC.A.R.E Services Robyn Riddle SilverdaleAlzheimers Foundantion Jennie Michel AucklandHakatene Maori Women's Welfare Issue

Pauline Wilson AshburtonHealthcare Otago Elaine Chisnall DunedinGrey Power Waihi Ian McKay WaihiPatea Standby S L Reardon WanganuiOpotiki Cancer Support Group

Dorothy M Lee OpotikiSouthland Cancer Society Southland Cancer Society InvercargillParafed Wellington Parafed Wellington WellingtonAuckland Conductive Education Foundation

Suzy Rab AucklandTaranaki Hospital John Doran New PlymoutRendell on Reed Ltd Belinda Rendell Oamaru

27

Organisation Individual Town/City

Unknown Sharon Hogan PapakuraCCS Julie Burrowes NelsonWaihi Hospital Jessie Waugh Whiritoa Gloria Herrick Southland Hayley Smith Warkworth Barry Sherwood WaimateVC Senior Citizens Mrs S Kane WanakaMoulder Union Warren Crawford Oamaru Astrid Schipper CoromandelGrey Power Pamela Raggett Mangonui Marietta Campbell HuntlySisters of St Joseph of the Sacred Heart

Sister Angela McArthur PaeroaFranklin Community Care Committee

J M Pellow SouHutt Valley Health Phil Wysocki Lower HuttOamaru North School Ross Willcocks Oamaru Zena Pigden DunedinGrey Power Judy Lamont Kawerau Tessie Koornneef Raumati Shirley Corbishley AlexandraGrey Power New Plymouth D M Reeve New PlymouOtago Family Health Veronica Casey DunedinMaori Health Services John Teepa HamiltonAT&R Service Southland Hospital

Denise Neville Invercargill Unknown Health Consumer Service Ada McCallum WhitiangaSchizophrenia Fellowship (SFNZ)

Elizabeth Rock West Coast Joan O'Keefe AucklandConductive Education Canterbury

Sally Thomas ChristchurchKids Foundation Janet Simons AucklandNZCCS Kimberley McClure WhakataneGrey Power Inc Bettina Mayle Warkworth Richard Pullen OamaruOamaru Senior Citizens Club Inc

B Wastell Oamaru Franky Lewis Auckland Mr E L Allington OamaruGrey Power Horowhenua Margaret Robins LevinWaimate Grey Power Inc Waimate Grey Power WaimateAlzheimers Society New Zealand

Elizabeth Chesterman ChristchurchTe Omanga Hospice Mary Harmer WellingtonTuwharetoa Health Services Ltd

Tuwharetoa Health Services Ltd Turangi Clement Randall TakakaWaiheke Health Trust Margit Schiller Waiheke IslandLevin Citizens Advice Bureau

Levin Citizens Advice Bureau LevinDisability Information Service

Jennifer Henderson DunedinDiabetes Auckland Lloyd Davies Auckland

28

Organisation Individual Town/City

Tauranga WBOP Division Arthritis

Pat Railton TaurangaChristchurch Hospital Evelyn McIver ChristchurchNational Council of Women National Council of Women ChristchurchAuckland Renal Transplant Group

Ian Dittmer AucklandRuapehu District Council Stuart Shaw TaumarunuiRural Women New Zealand Hurunui Provincial

Joan Larner HurunuiTaihape Rural Health Centre

Gemma Kennedy TaihapeChristchurch Hospital Lorraine Sutherland ChristchurchGrey Power South Waikato Corrie Rozendaal TokoroaNZ Medical Assoc Sheeni Naylor WellingtonSouthland District Council Julie Carter Invercargill Lyn Staples ThamesNZCCS Waitaki/Otago Family Health Team

Val Dearman OamaruStarship Childrens Hospital John Phibbs AucklandStewart Island Health Committee

Margaret E Rooney Stewart IslandSpecial Education Service Pat Pritchett ChristchurchPorirua City Council John Seddon WellingtonMidcentral Health Ltd Craig Johnston Palmerston Nor Eileen Macfarlane North CanterburyFPA New Zealand Dr Gill Greer WellingtonChatham Island Maori Community Health

Joyce Barby Chatham IslandsNorthland Health Amy Osborne Whangarei Eddie Keelan Wanganui A Russell Kerse PoriruaHealth Communities Brigid Wilkinson MastertonHealthcare Otago Liz Crook DunedinMinistry of Health Mental Health Directorate WellingtonAge Concern North Shore Morag MacKenzie AucklandPorirua & Kapiti Healthlink Dr Fran McGrath WellingtonEastern Bay of Plenty Hospice

Deborah Ann Mander WhakataneAotea Health Ltd Adele Robertson Great Barrier

IslandTurangi Transport Goup Inc. Ray Allan TurangiWaitemata Health Marina Corben AucklandWhitianga Community Resource Centre

Barbara Wittig WhitiangaHeart Children NZ Inc Jo Lawrence AucklandTe Kuiti Citizens Advice Bureau

Ros Richardson Te KuitiCanteen Jeff Winegar AucklandWhitianga Community Resource Centre

Paul Bradley WhitiangaBreast Screening Aoteroa - Coast to Coast

Flora McKenzie GisborneCitizens Advice Bureau Nancy GisborneAshburton Budget Advisory Service

L G Butt AshburtonN.O. Parent Network Group Stephen Whalley OamaruOtago Kidney Society Incorporated.

Rodger Cross OtagoGrey Power Paeroa A Bradshaw PaeroaCoastal Volunteer Emergency Transport

Val Wallace OpunakeMid Central Health Pauline Giles Palmerston North

29

Organisation Individual Town/City

N.O. Asthma Society Kathrine Millard OamaruEngineers Printers & Manufacters Union

Matthew Anderson OamaruNorth Otago Asthma Society

M T Fridd Oamaru L H Gray InvercargillHokianga Health Enterprise Trust

Christine Edwards KaikoheCommunity Hospice Service

Hazel Hill Whakatane Lynley Holme AucklandWCRC Charles & Barbara Wittig WhitiangaWhitianga Community Resource Centre

Ted Leigh WhitiangaWhitianga Community Resource Centre

Robyn Campbell WhitiangaGrey Power Dennis Paget BlenheimMercury Bay Cancer Support

Jenny Edwards WhitiangaEastbay Connection Ltd J M Fitzgerald RotoruaDPA New Zealand Inc Elizabeth Cooper Palmerston NorthGisborne East Coast Cancer Society

Janice Hobbs GisborneRural Women New Zealand B Pedersen ThamesMarborough Community Health Group

Maxine Wain Blenheim New Zealand CCS OAMARUTairua Care & Friendship Club

Tairua Care & Friendship Club TairuaHowick & Pakuranga Grey Power Association

V Scurr AucklandNZ CCS Otago Inc Helen Burnip Dunedin A M Quinlan WhangamataCanterbury Health Ltd Gerard Thomas Christchurch Ronald R Sutherland Central OtagoOtakou Maori Women's Welfare League

Colleen van der El DunedinGrey Power Whakatane District

Grey Power Whakatane WhakataneCCS Otago Arralyn Ibbotsen DunedinWaitaki District Health Services Ltd

Deborah Lord OamaruChristchurch Hospital Jill Chapman ChristchurchFar North Palliative & Cancer Care Charitable

Sue Curtis KaitaiaDiabetes Ashburton Joan Healey AshburtonGrey Power N.O. Inc Richard Pullen OamaruCoast Health Care Gail Johns GreymouthTaihape Health Team Shelley Clarke TaihapeTaupo District Health Committee

Carole Parker TaupoTaupo District Health Committee

Carole Conde-Acheson TaupoNelson Marlborough Health Services Ltd

Shona McLean Nelson Adele Jones ClydeCentral Otago Health Services Ltd

Esme Macdonald Clyde Ted Burgess Oamaru Justine Tringham AucklandRoyal New Zealand Foundation of the Blind

Paula Daye AucklandSouthland Multiple Sclerosis Society Inc.

Mary Burn InvercargillB.O.P. MS & ME Society. Lynette Richardson WhakataneChild Cancer Foundation J M Birss AucklandSchizophrenia Fellowship Support Group

Jenny Campbell Invercargill

30

Organisation Individual Town/City

Brain Injury Association, Northland Whangarei Malcolm Law WellingtonNational Council of Women Ann McKellar RotoruaMultiple Sclerosis Society Duilia Rendell WellingtonRenal Service, Auckland. Bronwen Nicholls AucklandTimeout Carers Bureau Pauline O'Connor ChristchurchEpilepsy Wellington Jenny Greenslade WellingtonNelson Hospital Steve Dubieniec NelsonChristchurch Hospital Ann Crawford ChristchurchNational Council of Women Liz Hicks Wellington Pat Preston Otago 9056Grey Power Don Robertson PalmCystic Fibrosis Association of New Zealand

Vickie Lynne Kennedy ChristchurchDPA Dunedin & District Patsy Wakefield DunedinNational Office Cancer Society of NZ

Helen Sullivan WellingtonHead Injury Society of Southland Inc.

Elizabeth Kelly InvercargillMackenzie Aged Persons Welfare Association.

Judith F Shaw FairlieChristchurch Kidney Society Gavin Ritchie ChristchurchPacific Health Ltd Sharon Paine TaurangaNelson Marlborough Mental Health Services

Merrill Brunt NelsonSouth Auckl and Health Haemodialysis Patients, Renal

Service Auckland

Amuri Community Care Support Group

Mary Kininmonth Waiau, North CanterburyNorth Otago Branch Otago

Family Health Patricia Taylor Oamaru

Te Kuiti & District Cancer Support Group

Mary Macnaughton Te KuitiFederation of Womens Health Council

Barbara Beckford GreymouthRegional Public Health Hutt Valley Hlth

BreastScreen Central WellingtonNgai Tahu Development Corporation

Janice Donaldson ChristchurchAshburton Hospital Nurse Specialists AshburtNgati Porou Hauora Inc Caroline Thompson Te Puia SpringsHealthlink South Ltd J Taylor ChristchurchNorthland Health Libby Jones Whangarei Celia Butler NASC Auckland Healthcare W D Campbell AucklandMandale House Mali Erick AucklandAdvocacy Network Services Jo Malcolm-Black New Plymouth Timaru District Council TimaruTairawhiti Healthcare Ltd Jenny-Barns-Graham GisborneOtago Southland Division Cancer Society

Ann Asquith Invercargill Te Miringa Huriwai Kaikohe Anne E McCracken SouthlandFramework Trust Jeff Radford AucklandTuatapere Hospital Trust Kerrie Gow TuatapereSouthland Kidney Society Inc

Ivan Herrick TuatapereHealth Waikato Wendy King HamiltonHealthcare Hawkes Bay Ltd Tracey Adamson Napier Colin Truman Motueka

31

Organisation Individual Town/City

Rural Women - New Zealand

Tess Casey WellingtonAuckland Regional Council Barry Mein AucklandChristchurch Hospital Dr Ruth Spearing ChristchurchRonald McDonald House Brent Taylor Auckland Auckland Hospital Social Worker AucklandSchizophrenia Fellowship NZ

Susan Noseworthy ChristchurchOpotiki District Grey Power Assoc Inc

F W Vickers OpotikiKidney Kids Support Group Inc

Elaine Simons AucklandHospice NZ Ann Martin WellingtonCounties Manakau Health Council

Pat Durey Manakau CityCountry Women's Institute Ngaire Marshall WellingtonDisabilities Resource Centre Trust

Bronwen Newdick WhakataneAge Concern Jan Mackay WellingtonThe Auckland District Kidney Society Inc

Nora van der Schcieck AucklandDisability Consultancy Services

Peter McRae OhopeAuckland Women's Health Council

Lynda Williams AucklandSouthland Hospital Rosalie Maaka InvercargillSouthern Health Social Workers InvercargillSouthern Health Helen McKenzie InvercargillSouthern Health Patricia O'Neill InvercargillFeilding Community Health Group

Lisa Lintov, Rachel Rusk, B. Robson Feilding Marie Harding Great Barrier Island Community Health Trust

Kathleen O'Shea Great Barrier Island Brain Injury Association, Northland Whangerei

Healthcare Otago Child Health Staff DunedinHealth Waikato Rose Hawkins Hamilton Dr John Mandeno Te KuitiChristchurch Hospital Katrina Enwright Christchurch Mrs Maryn Earwaker Tokanui