Te Pātaka - Tu Kotahi Māori Asthma Trust

The Innovation: Address the long-term respiratory needs of Māori in the Hutt Valley

The aim of Tu Kotahi Māori Asthma Trust’s innovation was to address the long-term respiratory needs of Māori in the Hutt Valley. This was achieved through a multi-faceted approach which included: preventative and opportunistic screening, delivering an LTRC (Long Term Respiratory Conditions) service, undertaking research, information, and training, and operating an MDT (Multi-Disciplinary Team). 

Tu Kotahi Maori Asthma Trust – Te Ha Oranga

Petera Wahanui (Buddy), Affected with COPD: COPD really affects my breathing.  But it’s all about the phlegm.  Asthma is totally different.  You run out of breath, but I think with COPD it’s involved a lot of phlegm, you coughing up a lot of phlegm.  And that’s what I put it down to, to the COPD – well that’s my whakaaro anyway. 

There’s a lot of sick people out there too that just won’t come.  I know quite a few and I’ve mentioned about Tu Kotahi, and they say “Oh no, I’ll be right.”  You know, that’s denial – denial of the sickness.  Same as me.  I kept saying “I can handle it.  I don’t need anybody’s help.”  That’s when you need somebody’s help. 

Ann Smith, Respiratory Nurse Educator: COPD, it is a debilitating disease.  It’s progressive which means it will get worse over time.  Lifestyle / normal activities will become gradually harder and harder for whanau. 

I think when the doctors tell you you have COPD, it’s always a life sentence.

Cheryl Davies, Manager: And sometimes not only for them, for the whole whanau because it has an impact on your whanau as well.

So Tu Kotahi has been around for 19 years.  We were set up to work with whanau with asthma and we’ve branched out from there.  We’re quite a diverse little organisation.  Even though we’re small we try to meet the needs of whanau in our community, so we do go out and do a lot of other mahi that we know affects our whanau and their health and wellbeing.

Huia Tavite, Community Health Worker: Do you know we’re all whanau-orientated.  I’d look after everybody as I’d expect my mum and dad to be treated or my nan and koro to be treated out in the community.  Yeah, I treat them like my mum and dad or my nan or koro.  Yeah I think we all do too.

Rose Climie, Administrator: Yeah.  Like extended whanau.

(Te Ha Oranga COPD roopu activities)

Cheryl Davies: They’re having lots of fun and that’s what we like to see.  Lots of laughing, lots of memories, so they like remembering their friends who were here before, which is why we put the memorial wall up.  It’s all about having fun.

(Te Ha Oranga COPD roopu sitting together for a meal – karakia, waiata etc.)

Ann Smith: Yeah I don’t know if you remember back to when we lost everybody, but this year alone – who did we lose?  Bob, yeah right at Christmas time. 

Unidentified whanau member (kuia): Every eight weeks, round a bout, she liked to go and get her hair done and eyebrows and all her whatevers, you know.  And she even liked to paint her nails, you know.  She looked good.

Huia Tavite: We encourage them to have their wills and try and get insurance for that time.  Yeah, it’s a big part of life now.

Okay, off we go Rose. 

So we’ll be going to visit Kathy today to get that sorted out.

Rose Climie: Oh I just like going to her place and listening to korero because she talks about her past life and where she’s come from; and where she is now; and the changes she’s had through her life.  I just love listening to all that korero.

(Client visit to Kathy Ternent’s home)

How are you Kathy?  How long have you been with Tu Kotahi now?

Kathy Ternent, Affected with COPD: About seven years.  Yeah, my beautiful family.

It hasn’t been that good.  It’s become rather lonely, but I can’t get up the stairs anymore.  But then if I need, they’re there for me, you know.  Aren’t you Huia?

Huia Tavite: Yes.  She thought we’d discharged her from the service because she hadn’t heard from us for a while.  I said “No, we don’t discharge.  Just give us a ring and we’ll be over.”

Kathy Ternent: I did too.  I thought “Oh, I’m finished.”  Only because I’d gone to the hospital with one of the support people from the group, Ann Smith the nurse.  And she said, “Well you need to go under the hospital umbrella.”  And I said “No, I don’t need to.  I’ve got my group with you.” 

I just think it’s so important to have everything put in place, especially when they’re jewellery and things involved.

(Signing will)

Unidentified: So you just sign here.

Kathy Ternent: Well I feel good that it’s all done.  And it’s something that I wished for.  And Huia’s helped me through all this time.  And she knew a long time ago that I wanted a will and a power of attorney written up.  But she felt that it should be done as well, so she’s been there to support me through this time.

Huia Tavite: Because we’ve had quite a few of our whanau pass away since we’ve started the group.  And I suppose it’s a bit of a hard time.

Rose Climie: It feels good knowing that their kids will be taken care of, because they don’t wanna leave them with the burden of the tangi.

(Te Ha Oranga COPD roopu)

Ann Smith: Does anybody remember Lena?  Lena Linda Patene’s.  Yes of course you do Heeni.  What do you remember about her?

Heeni Rei, Affected with COPD: We got along together, Lena and I.  We were friends right from the very beginning when we first started this group.  And we stayed that way.  But I remember going to visit her heaps every day without fail, and she’d be watching Emmerdale Farm – I hated that programme.  And I used tell her “Switch that off, what do you wanna watch that for?”

(Whanau laughs)

It’s not nice being breathless, depending on people.  I’ve been staying at home for about a year and a half.  I started getting depressed.  And then one of the educators downstairs asked me to go for a mobility scooter.  And I’ve had it for two years and I love it.  It’s the best thing I’ve ever done.

My mobility scooter is a buzz and you know I’m glad I got it.  I’m out on it a lot.  Twelve hours is what the power gives you.  That can get me to Porirua I suppose, but on the motorway…?  Ah, no.

Okay, have wheels will travel.  It’s good to be out.  Okay, here we go.

I love it, you know I go out there and I’ve got a great big grin on my face.  I’m smiling, you know.  And every car that goes past, I have a look to see if they know me in case they wanna give me a wave or I’ll give them a wave.

Look I’ll put my blinker on okay?  They even got blinkers.  We even got a horn.  Right, catch you laters.

When I’m not well, they’re there.  They’re always there.  If I’m in hospital they come and visit you.  They bring the group up if they can and visit you.  They’re there all the time.  They’re practically living on your doorstep.  Wonderful.  I’m glad I found them.  I wish they had been around when my mother was alive.  She would’ve loved them.

I don’t class myself as a client.  To me they seem to be my cure because they all help you, you know.  I mean I was a heavy smoker.  I went into their quit smoking group.  I did that for three years.  I tried and tried and tried and I just couldn’t.  Now I am smokefree.

It was going on a year and I told Rose, and I said to Rose that it was nearly a year since I had stopped smoking.  And since I had stopped smoking I started to change.  I started to listen to what Rose was telling me.  I started doing things Rose was telling me to do, and making sense of it all. 

Rose Goldsmith, Counsellor: The whakawhanaungatanga’s really, really important in my eyes.  And it’s bringing all those things in – you know, that respect; and being open to hearing where they’re at; not judging; and being humble.  You know if you’re wrong, you’re wrong.

(Te Ha Oranga COPD roopu)

Ann Smith: This time’s called whanaungatanga and it’s the difference between this group and any other rehabilitation group throughout New Zealand.  This is particularly Maori, obviously being whanaungatanga.  And whanaungatanga is about connecting.

Heeni Rei: This year I would like to have a good clean healthy new year.  Unfortunately I don’t qualify to have a lung operation because I over-smoked.  Although I have been smoking for nearly eighteen months…

Rose Goldsmith: A lot of these whanau, you know they’re stuck at home.  And so doesn’t matter whether it’s rain, hail or snow they want to still get out there and enjoy the scenery, the water, and the environment.  The ngahere is beautiful.  I have some whanau that like to do that and I learn a lot from them as well.  I’ve learned a lot from Heeni.  I’ve learned a lot from a lot of other whanau as well.

Heeni Rei (riding her mobility scooter): Woo hoo… how about that aye?  Oops, did I go off the path?  Not even…

If it wasn’t for Tu Kotahi I probably wouldn’t be here, you know?  I probably wouldn’t have lasted this long, you know?  They’ve just developed me so much.  They’ve done a hell of a lot for me.

(Te Ha Oranga COPD roopu – meal)

Whetu Hata, Affected with COPD: Best part I look forward to is the food.  The thing about Maori is we love our food.

Tony Kirk, Affected with COPD: Always been with Maori aye?  Everybody is together as one.  There’s no “You sit over there, you sit there, you sit there.”

But I found an easy way to get rid of phlegm is to hop under the shower.

Mate Kirk, Affected with COPD: How do you work that out?

Tony Kirk: The steam.  By getting hot.

But anyway, I don’t want to make a big story about that.  It’s just simple science.  See I went to school aye.

(At Tony and Mate Kirk’s home)

Tony Kirk: See, took me quite a well to finish this off aye.

Mate Kirk: See, he made all those earrings aye for me.

Tony Kirk: You know it’s surprising.  Everybody has a skill aye, a skill of some sort.  Some got the gift of the gab, which I haven’t got… I think.

Ann Smith: You know they’ve gone from being very quiet, shy people to out there.  And Mate’s found her way with her making her cards.

Tony Kirk: She does the same thing with her arts.  She goes outside the square.  She makes up her own, then she goes to a tutor who says “Wow, how did you manage to do that?”  You know, that always encourages me.

When I first started I never knew anything about COPD or asthma.  But they slowly fed me with information, booklets – what it is, what it’s all about – all that information; and how to control your illness.  You know, heaps of stuff.  Exercising…

Petera Wahanui (Buddy): That’s the funny thing you know, with the Maori people.  They think if they get sick, they’re the only ones that are sick.  So they go into their shell like I did.  Until Tu Kotahi came to my place and told me “You’re not the only one with that sickness.”  “Oh is that right?  I’ll come and have a look, see who else has got that sickness.”

Tony Kirk: Denial is a terrible thing aye.  You know, you know you’re crook, but you go “Nah.  I don’t wanna go to the doctors.  Buggar the doctor.  I can’t afford it.”  This, that and the other.  You’re always looking for excuses.  What not to do.  But you know you gotta do it, otherwise down the hole you go.

Petera Wahanui (Buddy): It’s sad in a way, when we do as a COPD group, turn up at the funeral of one of our people.  And we think to ourselves “How lucky we are that we’re still here.”  And that person is luckier still, the mind says that they’re gone.  You know, it’s an eye opener.  This disease is just sitting up here, just waiting.

Tony Kirk: When you hear that someone has passed on, then everybody gets hold of everybody else and we all converge around on the funeral day.  That’s how close we are.

Mate Kirk: Just like a family all together.

(Te Ha Oranga COPD roopu)

Whetu Hata: There really is only one thing I want for new years is to see everybody back.  And to have a new lung at some stage.

(At Whetu Hata’s home)

For when I found out that I had COPD or emphysema, all I could see was me dying.  You know, I thought I don’t wanna die because I want to see my grandchildren and children grow up.  So that’s what got me thinking that I gotta change a few things in my life.

It’s good though because I do need it, the exercise.  But for me, to just keep walking and talking it’s not easy.  But I’ll do it because you know, it’s gotta be done.  I’ve gotta do it because it makes my lungs exercise, keep moving and that.  Gotta keep the movement up or else they’ll just wear out.

When I first decided to give up smoking, it was Kokiri that got me onto the right track, their smoking cessation programme they got there.  And that’s when I first started going through Kokiri.  But I didn’t find out about Tu Kotahi Asthma until I found out that I had COPD.  So Kokiri in general, you know, you can’t go past that.

COPD is something that can’t be cured, can’t be fixed unless you have a lung transplant.  You can minimise the damage, like stop it from getting worse, but you can’t fix it.

This is what I use when I’m travelling up to Auckland.  It’s an impulse regulator.  Being able to breath without having any of these things will just be a godsend.  Yeah I can’t wait.

When they told me I was on the list and I thought “Well…”  That was good, I was happy.  But then again I was a bit anxious because it’s a big operation.  For me, at the moment, I’m not sure whether I’ll make it through sort of thing… because it’s just overwhelming and I’m just not sure how it’s gonna turn out.  But I wanna play touch again, even though I’ll be on the oldie team.  It’s cool.  I’ll show them a thing or two.

It’s all been a positive thing – Tu Kotahi.  From the time found out who they are to now, you know I’d do anything for them.

Cheryl Davies: And I think it made a big difference for Buddy and Tony when they were employed through Kokiri Marae.  So they both have a really valuable role in the work that they do.  So Buddy’s part of a parenting programme.  And Tony is part of support programme for young mums, so a lot of the children call him Papa and I think it gives him a real purpose to get up in the morning.

Tony Kirk: To see a little kid happy, that makes me happy.  They’ve given me a lot, so I gotta give something back.  It’s all a matter of choices aye.

(Te Ha Oranga COPD roopu)

Petera Wahanui (Buddy): Tai Chi, it’s a good thing.  It’s a Chinese version of breathing, it’s called Qigong.  And they quite like that.  They quite like the Tai Chi because it helps them to breathe properly.  And that’s what they need to do.

Cheryl Davies: For me, something that I really noticed about both Buddy and Tony is the way they’ve grown since they’ve started working here at Kokiri Marae.

The uniqueness of this service has been due to the Tu Kotahi team over the years.  And they’ve supported with things like curtains, blankets, budgeting advice, transport.  We run a weekly swimming programme and whanau are able to access that programme.  Support with healthy housing resources that we’ve developed over the years.  These are all the additional services that we’re able to provide and this is what makes this programme a success.

Petera Wahanui (Buddy): The Sydney Harbour Bridge, that was an experience and a half.  When I got there, I looked at it and it was quite high and I thought “Oh, I’m not too sure whether I can do it.”  But I just put my head down and bum up and went for it.  Before I knew it I was up the top.  And it was a great experience to get up there and I said “Jesus, I just beat my COPD.” 

I look back on it and I seen where I come from to where I am today.  I wouldn’t be able to do all that I’m doing today.  The first hurdle for me was to walk the Sydney Harbour Bridge and I thought if I can do that I can do anything.  And I can.  Just get out there and do it.  No good sitting at home because no one else will do it for you.

If it wasn’t for Tu Kotahi I don’t think I would be here you know.  They opened my eyes to the sickness that I’ve got.  And they really opened my eyes to what I’ve got.  And I’ve taken it all on board and I’ve very grateful for them being there for me.

 

About Tu Kotahi Māori Asthma Trust

Tu Kotahi Māori Asthma Trust provide a comprehensive range of respiratory services for Māori, including asthma, bronchiolitis, COPD (chronic obstructive pulmonary disease), sleep disorders, spirometry, counselling, training, healthy housing initiatives and research.

Contact

Tu Kotahi Māori Asthma Trust
7–9 Barnes Street
Seaview
Lower Hutt  
Wellington 5010

P O Box 1459

Phone: (04) 939 4629
Freephone: 0800 939 462
Email: info@kokiri-hauora.org.nz
Website: www.kokiri.org.nz

Disclaimer: This page and the innovation it accompanies do not represent the views of the Ministry of Health. The views represented are those of Tu Kotahi Māori Asthma Trust and the innovation piloted.

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