Wairarapa “postcode hole” for govt’s Alzheimer support

By Ray Lilley

Alzheimers patients in Wairarapa live in a Health New Zealand funding “postcode black hole” _ the only region of the country with no government funds provided to its volunteer group, Alzheimers Wairarapa. 

“This is a major issue for South Wairarapa people. As a voluntary group with no government support, we simply don’t have the funds to extend into South Wairarapa,” Alzheimers Wairarapa board member Carla Eglinton told The Star.. 

Based on Census data, some 620 Wairarapa residents currently suffer from dementia _ and some 500 of those can’t be assisted by the group because of a lack of central government funding.

“We simply don’t have the funds to extend down into South Wairarapa, and at the moment if you’re living in South Wairarapa you’re disadvantaged” as an Alzheimer’s sufferer, Eglinton said.

“The rest of the country has a funded community dementia service,” but not the Wairarapa.

“But we have never been given an answer as to why Alzheimers Wairarapa is not funded _ and the rest of the country is.

“The 620 figure is based on Census data and what we know about the dementia problem in the New Zealand population. That (figure) will include people who have been diagnosed and people who have not.”

Eglinton added: “The simple fact is that Wairarapa has a population which is aging faster than the national average, we know that from Census data. All of those people and all of their families will need help.

“Most are in South Wairarapa, though some (undiagnosed sufferers) are in Masterton.”

With a sole part-time nurse and part-time admin support and no manager, “we don’t have the resources.”

Grants, donations and one “significant legacy” are the only income for the group which voluntarily raises an average of $100,000 a year to cover operating costs.

“Without our 45 volunteers, we couldn’t operate. We need our nurse to be full-time, we need a manager, we need a lot of things.”

After meeting with Te Whatu Ora/Health NZ, board member Alicia Roberts said: “At no point was any indication given that our (funding) proposal wouldn’t be received favourably. And yet we received a very short email saying “no.”

“It is incredibly frustrating because we know our community needs this and we know we have the ability to help and to make a difference,” she said. 

Eglinton said “the thing we are most concerned about is that Te Whatu Ora has obligations to the people of South Wairarapa and they are currently not meeting them.”

“They are meeting them by funding these (other Alzheimers) organisations throughout the country _ but not here. We’re doing what we can for this region, but we’ve never received an answer as to why this region in particular _ which arguably has a higher need _ is not funded, she said. 

“The only answer we have been given in respect of our funding application is that there is no new funding available and that there is significant planning for a nationwide approach _ which we are 100-percent supportive of.

“If there can be a nationwide approach and people will get the services they need _ that’s brilliant.

But that could be years away. There’s nothing on the horizon.”

You are the hole in the nationwide approach?

“Absolutely. The postcode lottery that doesn’t deliver. And the  people of South Wairarapa are bearing the brunt of that” lack of action and funding.

The group said it would need $300,000  a year to do “a proper job” supporting Alzheimers patients and their families across the Wairarapa community.   

If government and its agencies wanted proof that the group could run the programmes, “we’ve been doing this for 20 years _ 20 years of volunteers keeeping this thing going.”  

They found rejection of the funding application “devastating _ and the brevity of the response, how nonchalant it was _ was very dismissive and it was very apparent they did not appreciate what we were asking for,” Eglinton said.

“We’re asking them to fund a new service _ not our existing services _ and they didn’t seem to understand that.”

“They (said they) understand they are failing in their KPIs (Key Performance Indicators), they understand that we’re doing good work and they support the work we are doing _ but they do not intend to fund us.”

At several good meetings with the funders, “they encouraged us to apply.”  

Board member Alicia Roberts added: “At no point was any indication given that our (funding) proposal wouldn’t be received favourably. And yet we received a very short email saying “no.”

“It is incredibly frustrating because we know our community needs this and we know we have the ability to help and to make a difference,” she said. 

The focus of the group’s funding drive is South Wairarapa because there are day services for people in Masterton but nothing in South Wairarapa. 

“Day services are really what we need in order to provide good support for people in South Wairarapa,” Roberts said. 

The day programme picks up dementia sufferers, takes them to a day programme “where they are secure, they are motivated and stimulated, they’re fed, they’re safe and then they are delivered home.” 

Day service actually provides respite for the carers and their families, meaning days of the week they don’t have to look after this (dementia) person.  This was the service which they had sought funding to provide.

It ensures respite for families and if the families have this available the patient is much more likely to remain in their care for longer. 

 “That alone is a major saving for the health system, as people going into fulltime care cost four times the amount of a service such as this (volunteer programme),” Eglinton said.

“Not only does it make sense in terms of financial investment for Te Whatu Ora, but also, the human cost of (refusing) it is unacceptable. We know when people go into care they decline more quickly.

“We would need a (minimum) $100,000 a year to do a service in South Wairarapa. That was the  budget put in to Te Whatu Ora to run that service for  a year … working on a two-day a week programme,” supporting 18 people twice a week.

So it’s not cheap to run?

“It’s a helluva a lot cheaper than people going in to care,” Carla replied. 

The part-time community support nurse is also a key aid, along with the group’s out-and-about programme of visits and activities.

The Out-and-About programme is already well-attended, well supported by other community groups. 

People “with standing” like Mayor Gary Caffill, Senior New Zealander of the Year Bob Francis, Dr Tim Matthews, have already signed a fresh letter seeking government support _ which is being sent to Health Commissioner Dr Lester Levi.

“It sets out the  background to this (funding hole) and asks them to reconsider” their funding refusal, Roberts said.

(See Attached).