Some of the most common questions people ask us:
How much of each dollar goes into client services?
This is a bit difficult to be exact about, but we are certain that at least 60 cents in the dollar go into direct client services with the rest spent on running expenses, business compliance and fundraising. We have a target of raising at least $4 for every dollar we spend on fundraising.
How much do you have to raise annually?
Close to $700,000 at the moment – with more and more patients joining the Society and costs going up this continues to increase every year.
What is your operating budget?
$656,000 for the next 12 months. The average cost of delivering our services is $500 per patient per year.
How much do you get from the gorvernment?
About $25,000 through a contract with the Ministry of Health to provide information and support, and the Counties Manukau DHB pays for the use of our community dialysis house. We also apply for Lotteries and Community grants as part of our fundraising programme but this funding is never guaranteed.
Why don't you ask for more?
We appreciate the amount we get, but with government funding the government decides what it wants to pay for, and that may not always be what our clients need most. Also, other organisations seem to find that government contracts only pay for part of the service covered by the contract.
Raising funds for general services or specific projects of our choosing allows us to be flexible, to tailor our services to what patients tell us they find most helpful, and to use the money we have where it can do most good.
How many patients/clients do you support?
Close to 3000 families.
What do you do for clients?
- We offer practical and emotional support through home visits and by phone.
- We can help with benefits and housing issues.
- We provide information about kidney failure and related topics and we run educational events in conjunction with medical staff.
- We have a community dialysis house where people can come and use a dialysis machine and do their own treatment
- We offer a free home based wellness programme
- All our services are aimed at empowering people to lead as normal a life as is possible with kidney failure.
- The most important thing we do for our clients is to walk alongside them so that they can get on with life.
What area do you cover?
All of the Northland, Auckland, Waikato, Bay of Plenty, Lakes, Tairawhiti and Hawkes Bay regions.
Are your services free or do clients have to pay?
Our services are free, except for a few dialysis related items that we buy and on-sell to patients.
Why doesn't the hospital provide these services?
- The job of the health service is to look after patients’ medical care.
- Kidney Society services are quite different- our staff do not need to focus on health problems and treatments; they can concentrate on supporting the patients and their families as they live their lives around kidney failure.
- Our services complement those provided by the hospitals and we provide the “extras” that go beyond immediate health needs.
- We have a very good working relationship with hospital medical and social work staff and between us we offer a range of services that neither the hospital nor the Kidney Society could deliver on their own.
How many staff do you employ?
Seven in full time permanent employment, three part time on contract.
Are they voluntary or paid staff?
The nine people we employ are paid, but we also have some volunteers.
How many of them actually work in community?
We have thee paid staff who go out and visit people in hospital and in their homes, but only some of our work is done out in the community. A lot of patient support is delivered by staff at our Centre in Papatoetoe where people can visit us or phone for information and support.
All our staff are trained to talk to clients so that people always feel welcome when they contact us.
How long has the Society been around?
The Society started as a social club for patients called “Kidney Kapers” in the late 1970’s. The Society itself has been around since 1980. At that time it was still very small, not much more than a support group run by patients for patients, but it has grown steadily into the professionally run organisation it is now.
However, our board is made up mostly of patients and family members and this ensures that the interests and needs of our clients are always central to everything we do.
Who else provides these services?
There is no service quite like ours in the region we cover, anywhere else in New Zealand. There are many good community support services and there are smaller kidney patient societies throughout New Zealand, but none that specialise in supporting people with kidney failure and also provide the range of services we do. Kidney Health NZ is a national organisation supporting kidney patients and their families by way of education, advocacy and research across all areas of kidney health – including organ donation and transplant, dialysis, early detection and prevention of chronic kidney disease.
Are you the same as Kidney Kids?
No, Kidney Kids is a support organisation for families who have a child with kidney problems, including a small number of children with kidney failure. Our Society supports only people whose kidneys have failed and who do, or may soon need dialysis or a kidney transplant, and this includes children and young people who have kidney failure. Kidney Kids and the Kidney Society have complementary roles and we work together from time to time but we are independent from each other in every way. Client families sometimes belong to both our organisations.
Are you part of Kidney Health New Zealand
No, Kidney Health NZ and all local and regional kidney patient societies in New Zealand are independent from each other, although they all work together for the benefit of people with kidney disease and kidney failure. They have complementary roles but do different things. Patient societies concentrate on local patient support while Kidney Health Kidney Health NZ is a national organisation supporting kidney patients and their families by way of education, advocacy and research across all areas of kidney health – including organ donation and transplant, dialysis, early detection and prevention of chronic kidney disease.
We have close links with Kidney Health NZ and are represented on their Board.
Are you involved with cure and prevention?
No, but we work closely with Kidney Health New Zealand, the national organisation that deals with these things. We think this is a good partnership that allows each independent organisation to do what it is best at.
Do you undertake research?
No, our expertise lies in providing support services for people living with kidney failure. Research, like working towards cure and prevention, is the domain of Kidney Health New Zealand and while we support them in their work, we do not get involved with research ourselves.
What is the waiting time for a transplant and how does the waiting list works?
The transplant waiting list is not a “first come, first served” kind of list. How long someone has to wait depends on how long it takes for a kidney to become available that is a good match for that individual. Being on the waiting list simply means that you are “ready and waiting” for when the right kidney comes along for you. For people waiting for a kidney from a deceased donor this can be anything from a few weeks to seven or more years.
For people who have a living donor, it can take up to a year to have all the tests done that are necessary to make sure the donor kidney is a good match, and that the transplant operation is safe for both the donor and the recipient.
Are dialysis machines expensive?
They are, but dialysis machines are paid for by the health service – in New Zealand people do not have to buy their own machine or pay for any of the consumables. Many years ago there was a shortage of dialysis machines, but these days that is not a problem anywhere in New Zealand.
What does it cost to have dialysis at home?
For patients using a haemodialysis machine at home, the health service provides the dialysis machine and all the medical supplies patients need, so the treatment itself is free. The same applies to patients on peritoneal dialysis.
Patients do have to pay for things like some medications and home haemodialysis patients usually also pay for the extra power and water needed to run the machine and to keep them warm during dialysis. Some District Health Boards contribute some money to the cost of power and water.
Home dialysis patients also need to pay for their own transport to and from hospital appointments, parking etc. while patients who dialyse in hospital units three times a week have some or all of their travel to and from dialysis paid for by the health service.
These costs can add up and especially for people who do not qualify for income support this can be a problem. However, there are many benefits of doing dialysis at home that for many people outweight the extra cost.
Doesn't Jonah Lomu support the Kidney Society?
To us at the Kidney Society he is a patient like all our other patients, and we never talk about patients as they are entitled to their privacy. But Jonah’s story is well known to everyone in NZ and around the world, and you probably know as much if not more about him as we do.
His story is available on www.jonahlomu.com.
Jonah has chosen to support Kidney Kids of NZ as their patron. When he first started dialysis we let Jonah know that the Kidney Society was there for him if he wanted to get in touch. We did not ask him for anything, as to us he was like all our patients needing time and privacy to come to terms with his situation. Maybe one day Jonah will want to do something for the Kidney Society, but it is entirely his choice.
Isn't diabetes the main cause of kidney failure and doesn't it affect mostly Maori and Pacific people?
It is, close to 50% of people with kidney failure have it as a result of diabetes. However, kidney failure can and does strike anyone, of any background, race or age.
For every patient with kidney failure as a result of diabetes there is another whose kidney failure is caused by poorly controlled high blood pressure or one of many kidney diseases including nephritis, inherited conditions, Lupus, kidney stones and repeated kidney infections.
Maori people make up around 26% of all Kidney Society clients, Pacific people 22%, European people 33% and all others 19%.
Kidney disease is progressive and may exist for 10 to 20 years without obvious symptoms before it may lead to the need for dialysis. Awareness and prevention campaigns today cannot undo the damage done to many of our patients’ kidneys in the past. However, educating their families/whanau about preventing diabetes is something all or families and the general public should do.
Why is diabetes a problem after kidney transplantation?
There are several reasons why diabetes can be a problem after a transplant.
If someone has diabetes before a transplant, when they are on dialysis, it’s very unusual for the diabetes to go away. Indeed, it often gets harder to control. Some of the drugs given to keep the transplant working – the anti-rejection drugs – can cause diabetes as a side effect. These drugs are important in transplantation and therefore, even if one of these drugs causes diabetes, it is not caused by their transplant.
People may also be at extra risk of developing diabetes after a kidney transplant if they have several family members with diabetes.