Whānau were described in the context of supporting patients, but also as people who had support needs of their own along the cancer journey. Whānau needed provision of good information, alongside practical and emotional support. Knowing that whānau were being looked after was important to patients, as described by this participant:
And because do you know, people on the cancer journey tend to worry about other members of their family too…. Yeah so it is not about just the one person, it is about everyone that is there. (Community 6)
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Travel to cancer treatment centres
When community participants reflected on the needs of patients and whānau undergoing cancer treatment, the struggle to travel to treatment centres featured strongly in their discussions. Travel could be problematic for both urban and rural whānau. For those living in isolated geographic areas, travel and
accommodation were needed. Meeting the criteria for hospital accommodation could be problematic. A cancer care co-ordinator, for example, described a 100- kilometre cut-off for staying at hospital residences, which excluded some
whānau.
Transport issues were not unique to rural areas. Participants from the city also described transport as a barrier for the cancer patients and whānau in their care. People with cars had to understand where to go and where to park, as well as having enough money to pay for petrol and parking. Those without cars had to rely on inconsistent shuttle services or public transport.
A community health worker described a cancer patient in his eighties who was unable to arrange hospital transport and was instead taking public transport to the hospital. There was, however, no bus stop near his home. This participant had noted that hospital shuttles were available for travel to dialysis and had advocated on behalf of the patient to try and arrange a hospital shuttle for cancer treatment.
Financial issues for whānau throughout cancer treatment
In addition to transport issues, participants described financial stresses for patients and whānau as they entered the world of cancer treatment. Whānau could have the main breadwinner undergoing treatment, or a number of whānau members might have to take time off work to provide childcare, transport or support. A community worker described worries for patients when their income
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dried up. Additionally, a hospice Māori Liaison described the financial burden for whānau when a number of whānau members took on the care responsibility but were not receiving any care benefit to supplement their income:
they have to take time off work to, maybe be on a roster system to come to the hospice sometimes or be at home, taking care. A lot of them are not interested in applying for any benefit so that puts a lot of pressure. (Community 3)
This section has presented participants’ views about whānau support needs throughout the cancer journey. The work of primary health care providers in providing advocacy to help address these needs is outlined in the following section.
5.3 Advocacy
Or we might be filling out caregiver forms for the family to look after them. So there are other things that we might still be doing, without necessarily being, you know so much medically for them. (Community 5)
Participants described providing advocacy for cancer patients and whānau in engaging with other organisations. These advocacy services were undertaken by Māori health providers, community workers at GP clinics and hospice liaison workers. The agency that came up most often as an example of an organisation that required advocacy for patients to engage with was WINZ. This agency provides benefits and financial assistance to people in need and for many of the cancer patients that our participants worked with, having cancer treatment put them in a position where they required government financial assistance for the first time.
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Engaging with WINZ appeared to be daunting for most of the cancer patients that the participants worked with. There were many examples given by participants of people from their communities struggling to access the benefits they were entitled to, with an added barrier being not having a regular caseworker. In one example a community health worker expressed frustration when recalling her experience of supporting a cancer patient at WINZ who was trying to change from a sickness benefit to an invalids benefit:
We had to go there, we had letters from the doctors that we sent to WINZ. But they would not, it was as if they didn’t believe that it was letter from the doctors because we took them in and they said well you look fine. I know! (Community 6)
A hospice Māori Liaison described a similar encounter with WINZ as she worked with a hospice patient to gain a carers benefit for a whānau member:
I was really angry because they were treated as if they were wanting to get something extra from the government… I have had to go with them and it just makes them feel like they are criminals because they are applying for a benefit and then they have the third degree about things. And yet all they are going in there to… so some member of their family can receive support. (Community 3)
Participants also described meetings with Housing New Zealand, a government agency that provides social housing. A community worker from a Māori health provider organisation recalled an example of a very ill cancer patient with poor mobility being refused an appropriate house:
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She was having chemotherapy and she couldn’t get up and down the stairs anymore, for a transfer to a single storey house and they wouldn’t transfer her… Yes, it was absolutely appalling and she had to stay in that house until she passed away. (Community 6)
As patient advocates, primary health care providers also distributed information about cancer and its treatment, as well as referring patients and whānau to the appropriate support services. These will be explored in the following sections.