Heath and sister Piper are very close but have been separated while Heath is in Starship Hospital. Photo: Supplied.

Little boy’s mystery illness baffles medical experts

A little Blenheim boy is battling a mystery illness that has almost cost him his life.

Heath Johnsen, 2, suffers from severe digestive issue which have left him unable to eat since he was just two months old.

The youngster has been flown to Starship Hospital by LifeFlight in Auckland where his worried family hope doctors can discover what is making him so sick.

His aunty Emma McKinnon says the family have fought hard for answers after Heath fell ill at just two months old.

“He’s lost almost two years of his life; it’s taken too long and we do feel a bit of anger about that.

Heath has spent more than 150 nights in Blenheim, Nelson and Christchurch hospitals over the last nine months. Photo: Supplied.
Heath has spent more than 150 nights in Blenheim, Nelson and Christchurch hospitals over the last nine months. Photo: Supplied.

“We knew something wasn’t right but were told he would grow out of it.

“He would scream in complete agony, but it wasn’t until he was 15 months old and weighed just 7kg that people started taking it seriously.”

Heath has spent more than 150 nights in Blenheim, Nelson and Christchurch hospitals over the last nine months.

But medical experts are still baffled, Emma says.

“Things were on the improve for a little while then it all came crashing down.

“Heath went from okay to being bad within hours,” she says.

A permanent IV line provides the nutrition he needs, but his health is still fragile.

Emma says he recently needed two blood transfusions in three weeks as he deteriorated.

“He’s baffled the medical teams in the South Island.

“Heath was also given another blood transfusion on Wednesday which helped perk him up.

“It has now become very serious and extremely concerning with that being the second one needed in just 3 weeks,” she says.

Heath’s mum Jess McKinnon, is in Auckland with him while his sister Piper Johnsen,6, stays at home with Emma.

His father Tiri Johnsen is spending the majority of his time in Blenheim, where is starting up his own business.

“Family is everything at a time like this and some days you would never get through if it wasn’t for each other.

“A journey with a sick child you would never wish on anyone and some days are beyond tough while other days bring so much joy,” Emma says.

The family need ongoing support to help them while they spend time with Heath.

“With Heath’s future at this stage being so unstable we can’t thank people enough for their generosity.

“Let’s hope Starship can offer some answers and reassurance our little man is okay.

“Any financial donation whether it be $5 or $50 is greatly accepted.”

Donations can be made to Grovetown School Parent Support Group (PSG), ASB 12 3167 0143314 00. Reference last name and/or donation. Use HEATH as the code.

A diagnosis of Alzheimers changes life for the patient and their family. Photo: Models/Supplied.

A life-changing diagnosis – living with Alzheimers

September is World Alzheimers Month.  Below, a husband talks about his wife’s diagnosis and how it has changed their lives.

There are still many good days, moments the devoted couple of 60 years can enjoy ordinary moments they used to take for granted.

For a Marlborough husband and wife, who asked not to be named, an uneventful trip to the supermarket, or even watching TV and laughing together has taken on a special significance.

A diagnosis of Alzheimers for the wife earlier this year changed both their lives in an instance.

“It’s a real defining point, especially for the patient, I hate that word, but use it anyway.

“Once that word, Alzheimers, comes up, you’ve crossed the Rubicon and can’t go back. It took a year to come to terms with it,” he says.

Dementia affects nearly 80 per cent of New Zealanders in some way.

Early warning signs include forgetting conversations or denying they took place, repetition, misplacing items and forgetting where to find household objects.

The disease affects whole families. Models/Supplied.

There is a gradual decrease in socialisation and, latterly, confusion over family, time and place.

For the husband, looking back, the signs were all there.

“The first signs began about five years ago. She was forgetting conversations or that we were going out for tea and would say I hadn’t told her.

“I had a feeling that this was more than just forgetting things, something was out of kilter but as I didn’t really know what was going on, I had to find a way to adjust.

“The worst thing for me, apart from the terrible time my wife is going through, is that there are two of us in this situation. I’ve no experience with this and the impact is huge,” he says.

One of the first tasks he undertook was to contact Alzheimers Marlborough.

The support and information they have provided has proven invaluable, he says.

Almost 70,000 Kiwis are living with dementia. More than 170,000 Kiwis will be living with dementia by 2050

Dementia also impacts women at a higher rate, showing a 30 per cent greater prevalence.

In a cruel twist of fate, the slow progress of the disease in this case means the woman in question is aware of the changes and the likely course the illness will take.

“She’s aware [of what’s happening]. It would be easier if she wasn’t. Being aware and having to come to terms with it is the difficulty,” her husband says.

“Between 70 and 80 per cent of the time we can carry on a semblance of a real life.

“No two days are the same. There may be two days when it’s calm and everything is nice and peaceful. You learn to make the most of the good days.

“My wife still has hope from time to time and will sometimes think that she’s not actually as bad as she was.

“I can’t hope like that,as I know that this condition is irreversible

Likening the illness to a photograph album that is gradually losing its pictures, the retired husband says routine is key when it comes to helping minimise distress.

Where once this committed couple were ardent travelers, the illness has effectively clipped their wings.

“Travel is an upsetter. Travel was a big and important part of our lives, it’s still something she sometimes looks forward to but also has the nouse to know that long distance travel is not an option anymore.”

Alzheimers NZ represents people living with dementia at a national level.

The organisation provides information and resources, advocates for high quality services, and promotes research about prevention, treatment, cure and care.

Being open with the couple’s children, all of whom live overseas, the couple’s friends and neighbours has helped.

There is no point in pretending it’s not happening, he says.

But having to be selective about what information he passes onto his wife has been “difficult”.

“The subterfuge is difficult. Sometimes you have to simply let them believe wholly that something that isn’t true is true or indulge in small white lies.

“I feel bad about that but after a while you get used to it, you do. What you’re doing all the time is thinking for two people,” he says.

Picking his battles has proven key.

“Sometimes at the supermarket we’ll end up with three items of the same thing, it doesn’t really matter if she’s happy.

“You need to choose your time to walk away. If there’s a hint of an argument, her focus narrows and becomes more self centred.

“I’m more often in the wrong now and the simple thing is to become the bigger person. The most important thing for me now as the ‘carer’  is to have time out to relax or indulge in another activity.

“You cut your losses and give in if it doesn’t really matter,” he says.

The future is very much on his mind and ultimately, he knows there is no happy ending.

“I think about it all the time, it’d be foolish if I didn’t.

“You can’t make any definitive plans you can only take guesses. You do have to think about the ultimate; there’s no answer to that at this stage.

“I just have to keep an open mind; hope for the best but know to expect the worst. For further information, help or advice visit www.alzheimers.org.nz/marlborough or contact 03 577 6172.

Alzheimers Marlborough are holding a Memory Walk on Saturday 21 September, leaving the Munro Street Car Park at 10:00am. Registration is completely free and can be made prior to the day by phoning the office – 577 6172. Wear something purple. The Memory Walk is for people of all ages and abilities to remember family and community members that have been or are affected by dementia.

 

Robbie Parkes needs a diabetic alert dog to help manage his Type-1 diabetes. Photo: Paula Hulburt.

Boy’s best friend a life saver

Four-year-old Robbie Parkes desperately wants a dog, not just any dog however, a dog that will potentially save his life.

After falling dangerously ill in May, the Linkwater boy was diagnosed with Type-1 diabetes.

With no history of the condition in their family, mum Diane Parkes says they have been left reeling by the shock diagnosis.

Robbie has been accepted as a potential candidate for a diabetic alert dog from Australia- but the farming family need $20,000 to make the dream a reality.

For mum Diane, the new addition to the family would be much-needed peace of mind.

“The do can be with him 24/7, on the tractor, when he’s playing, and a big thing is that the dog can be with him at nighttime too.

“It would make such a big difference to our lives.”

Four-year-old Robbie Parkes desperately wants a dog, not just any dog however, a dog that will potentially save his life.
Four-year-old Robbie Parkes desperately wants a dog, not just any dog however, a dog that will potentially save his life. Photo: Paula Hulburt.

Dad Gareth is a stock-truck driver and is away for long stretches of time, so Diane checks on Robbie’s glucose levels every two hours throughout the night.

After making an emergency trip to Blenheim when Robbie first got sick, the prospect of a pet who could warn her when her son was ill would be “life-changing”, she says.

“The dogs are trained to wake or get the attention of someone else if they sense something isn’t right.

“They sniff out if levels are too low or too high 10 minutes before it actually happens.

“If the dog was with Robbie all the time it would give me peace of mind,” she says.

Camped out on a stretcher bed in Robbie’s room, Diane has not had a full night of sleep since his diagnosis on Mothers’ Day when he was admitted to Wairau Hospital for three nights.

Looking after the family’s farm, calving and home-schooling Robbie’s two older siblings, means there is little spare time in the day.

An energetic boy who loves to play outside, Robbie needs constant monitoring.

From crying in fear each time he had to have a finger-prick test done, the brave youngster can now do them himself four times a day.

“He had blood test after blood test and needles and drips, but he’s been very brave and we’re really proud of him.

“His body was basically shutting down, he was almost unconscious and couldn’t stop vomiting.

“It would be wonderful to think that an assistance dog would help stop him having to be in hospital again,” Diane says.

The family are holding raffles to help fundraise and have also set up a donation page on Facebook.

“I haven’t liked to ask for the full amount so am trying to raise $5000. It would be an amazing start,” Diane says.

To donate visit www.facebook.com/donate/939821693029494/2391922750884457/

Mobile dental clinic Seddon patients, from left, Hadley, Maisie and Brodie MacDonald. Photo: Summa MacDonald.

Dental clinic smiles over miles

Tooth savvy children in rural Marlborough towns are giving dental therapists plenty to smile about.

Nelson Marlborough Mobile Dental Clinic has proven a popular draw for children in Renwick, Seddon and Ward, with almost 100 per cent up-to-date with appointments.

This has helped free-up dental therapists to focus their attentions in town clinics to help alleviate a backlog.

The Nelson Marlborough Mobile Dental Clinic was due to visit Renwick, Seddon and Ward one more time this year for annual check-ups.

But youngsters have been so good at showing-up for appointments it won’t need to return until next year, health bosses say.

Nelson Marlborough Health Community Oral Health Service clinical director Phil Sussex says Marlborough mobile clinic users keep most appointments.

“Across our whole service only 9 per cent of appointments are not kept.

“We consistently find this is much lower for the Marlborough mobile clinic users and we think this reflects how much our rural communities value the service.

“Parents understand how important it is to make sure children get their annual check-up”.

The Ministry of Health wants district health boards to aim for less then ten per cent of children to be overdue for an appointment at any one time.

In Marlborough the percentage has dropped from 11 per cent in 2017 to just 2 percent so far this year.

Phil says 1856 children are seen through the two-chair Marlborough mobile service each year.

He credits both parents and staff for helping children keep their appointments.

“It also takes the co-operation of parents and the support of schools who host the mobile clinic on specially-built parking bays with connections for internet, electricity and water.

“Our friendly, experienced dental therapists are very much part of the success of the clinics – they go to great lengths to make sure a child has a positive experience at their appointment,” he says.

The clinic usually makes regular 6-monthly visits to each area. The mobile unit can do the same treatments and preventative measures that can be done at the community hub in Blenheim.

Phil says there continues to be a gradual improvement in the children’s oral health and enrolment rates across the NMH service.

“Different populations do have different rates of tooth decay and it is still sugar, particularly sugary drinks that drive this.

“Our preventative messages about kids drinking only water and milk to keep teeth healthy are up against some fairly difficult competition from advertising.

“Hopefully the kids will be passing this advice on to the adults who could benefit as well,” Phil says.

The mobile clinic will return to Renwick, Seddon and Ward in January next year.

Change manager Sue Lawrence, project manager Grant Pownall and clinical support staff member Lisa Naeyaert with ‘Florence’. Photo: Paula Hulburt.

Hi-tech help for hospital helping lighten the load

Sitting in a corridor at Wairau Hospital, Florence is dedicated to helping patients.

Since she started two months ago, the slim new addition has been widely praised for her help and assistance.

Popular with her clerical support colleagues in the hospital’s outpatient’s department, Florence the check-in kiosk has helped cut their workload.

Affectionately dubbed Florence by hospital staff, the new hi-tech kiosk has been brought in by hospital bosses as part of a three-month pilot.

Clinical support staff member Lisa Naeyaert using 'Florence' with project manager Grant Pownall. Photo: Paula Hulburt.
Clinical support staff member Lisa Naeyaert using ‘Florence’ with project manager Grant Pownall. Photo: Paula Hulburt.

Project manager Grant Pownell says patient-feedback prompted the move.

“Patients keep saying to us that they would like to interact with us in different ways like emails and patient portals like they might see at their GP

“This is something that we can do right now that might suit better,” he says.

Each patient attending an outpatient appointment is sent a confirmation letter which now includes a scannable barcode.

Florence then checks the patient details are correct before checking someone into the system.

Patients can also enter their National Health Index (NHI) number manually.

“There are security measures in place to make sure that people are who they say they are,” says Grant.

“It’s about seeing if we can keep the flow going by giving staff and patients more information about their journey,” he says.

Developed by Florence Health, the kiosk has been used by around 40 percent of patients.

“There’s always been a bit of rivalry between Nelson and Marlborough and Marlborough is leading the way in the Top of the South with uptake levels,” Grant says.

A receptionist is always available should help be needed.

Change manager Sue Lawrence says Florence is the “way forward.”

“Patients are giving it a go, they may not get it quite right first time but the more times they come in, the better they’ll get.

“The feedback we’re getting from charge nurse managers about what patients think which has driven the change.”

Around 100 people a day visit the outpatient department and for staff, a time-consuming part of their duties is checking people in.

Clerical support’s Lisa Naeyaert says Florence has helped free them-up for other work.

“Florence isn’t taking our jobs, she’s helping.”

Council have given their approval to subdivide land at Wairau Hospital. Photo: Supplied.

Hospital land sale set for public scrutiny

The sale of land at Wairau Hospital will come under public scrutiny as the health board seeks opinion from the community.

Public opinion on the sale of 6.3 hectares of land at Wairau Hospital is being sought.

The move comes after Marlborough District Council approved the proposed subdivision.

A spokeswoman from Nelson Marlborough Health (NMH) says the public submission process is a legislative requirement.

She says all submissions will be considered before the Board makes a final decision.

“NMH has been aware for some time that there is a surplus of land at Wairau hospital.

“When the Hospital was redeveloped in 2008-2010 the rebuild size confirmed the size requirement for the hospital,” she says.

The proposal would see the subdivision of existing residential units and an empty building at 46 Hospital Rd.

Eight new residential units could potentially be built on an empty block of land behind Marlborough Hospice.

But the final decision over how the land is used would be up to the buyer.

“The use of the land will ultimately be determined by a new owner. However, it will be zoned for residential use at the conclusion of the subdivision,” the spokeswoman says.

A Marlborough community housing group who provide supported living for seniors declared an interest in the site earlier this year.

Abbeyfield Marlborough is working with Abbeyfield NZ to develop to establish an Abbeyfield house for 12 residents in the Marlborough district.

It is currently looking to source a suitable site and fundraise.

Health bosses says the plan would leave them with around 7.7 hectares for any future hospital development.

A spokeswoman says money made from any sale would be retained by the board.

The closing date for submissions is 13 September 2019.

How to make a submission

Submissions must be dated, signed and include the following information:

  1. Your name, postal address, telephone and email address (if applicable)
  2. A statement confirming that the submission is made on the disposal of Wairau Hospital East Block
  3. Your view on the proposed sale of the property

A copy of the submission must be received by NMH by 5pm Friday 13 September 2019 at this address:

Wairau surplus land submission
Corporate office
Nelson Marlborough Health
Private Bag 18
Nelson 7040

Alternatively, the submission may be made to the following email address: [email protected]

An urgent delivery of flu vaccine is set to arrive in the region to help boost dwindling supplies.

Flu shot crisis fixed

An urgent delivery of flu vaccine is set to arrive in the region to help boost dwindling supplies.

The Ministry of Health and PHARMAC have revealed an extra 55,000 doses of influenza vaccine are due to arrive in the country soon.

And a consignment of FluQuadri is expected to reach Marlborough next week.

The move comes in the wake of a nationwide shortage.

The flu hit residents in Nelson and Marlborough especially hard, says a spokeswoman from Nelson Marlborough District Health Board (NMDHB).

“Health professionals in Nelson and Marlborough report a greater number of people admitted to hospital with serious complications caused by influenza, including at least three children,” she says.

Eleven people were admitted to Wairau Hospital in Blenheim, including three children and one pregnant woman in May.

A spokeswoman says the increase in demand for the vaccination over the last four years shows how seriously the public took the risk of contracting the potentially deadly virus.

“The increasing demand reflects increasing community understanding of just how severe influenza can be and the importance of efforts to protect people and prevent it spreading”.

Figures from NMDHB show a steady rise in the uptake of vaccinations since 2014 when 39,200 people were vaccinated in Nelson and Marlborough.

By the end of flu season 2018, this had risen to 46,699.

The distribution of influenza vaccine in New Zealand has reached near-record levels, revealed the spokeswoman.

Around 1.3 million doses of influenza vaccine have been distributed already this winter.

“This number is close to last year’s all-time record of 1.326 million doses for the entire season and exceeds the number of doses distributed each year in 2016 and 2017,” she says.

Wairau hospital holds supplies of vaccines for vulnerable, eligible patients.

The additional vaccines mean that other New Zealanders will be able to purchase the vaccine once the new stocks arrive, says the spokeswoman.

Earlier this year, Pharmac and the Ministry of Health advised community-based doctors to limit the vaccination for those most at risk.

Nelson Marlborough Health Chief Medical Officer and paediatrician Dr Nick Baker says there was a push this year for ‘high needs’ patients to be vaccinated.

“Flu vaccination is especially important for anyone who has a health problem that means they are less able to cope with flu.

“Any condition that makes it harder to breathe and cough well makes influenza particularly severe.

“We hope to see both the local and national demand for flu vaccination increase again this year, as it did in 2018,” he says.

New ambulances for region

Story by Jonty Dine

A trio of new ambulances is set to start saving lives across the top-of-the-south.

The three vehicles were gifted to St John last week with one to be based at Blenheim, Richmond, and Motueka.

Territory manager Robbie Blankstein says ambulances no longer simply act as transport to the hospital.

“These are our offices – the days of working in a converted campervan are over.”

The highly equipped, lifesaving vehicles do not come cheap, however, with each ambulance costing $220,000. But the new additions were made possible thanks to donations from Pub Charity Limited in partnership with Northend Hotels.

Among the revolutionary features is an automated Powerload Stryker Stretcher, which will reduce staff injuries and fatigue.

“Our job is unplanned; we pick up multiple patients often multiple times per day,” Robbie says.

He says the new stretcher will mean 70 fewer lifts per day for ambulance officers.

“It is one of the many design benefits.”

The three emergency vehicles were blessed and dedicated at a ceremony in Nelson last Friday morning.

St John District operations manager for Tasman, James McMeekin, says the generous donations helps ensure local ambulance crews have the most up-to-date vehicles and lifesaving equipment to treat patients.

“No one knows when they will need an ambulance, but if, and when the time comes, you need to know you’ll get the right care at the right time.”

Pub Charity Limited chief executive Martin Cheer says for someone in distress, there can be no more comforting sound than a siren, off in the distance indicating help is at hand.

“Then come the men and women of St John – cool and calm under pressure responding with a confidence that allows a patient to focus on their own wellbeing.”

In the calendar year 2018, St John responded to 12,828 incidents in the Nelson Bays and Marlborough area, 33.3 percent of these were life threatening or time critical.

Hospital staff ward off flu

Busy hospital staff can now get flu shots on the wards while they work.

Infection control staff are offering flu vaccinations to nurses, doctors and clerical staff in all inpatient wards at Wairau Hospital.

The move means vital personal do not have to leave the wards at all.

Previously, vaccinated staff had to wait 20 minutes to be given the all clear to return to work.

A spokeswoman from Nelson Marlborough Health says staff can continue to work but a nurse will be on hand to ensure they are still safe.

“We have vaccinators on wards so that staff can ‘get done’ while they work and continue working while being observed for the mandatory 20-minute period – very convenient.”

The flu jab is offered to 3,000 NMDHB staff.

Last year a record 1.3 million New Zealanders were immunised against influenza, after the northern hemisphere experienced a particularly fatal flu season.

But health bosses are warning people not to be complacent with seven confirmed cases already confirmed at Nelson Hospital.

The peak season is typically around July and last year saw a last-minute surge of people booking vaccinations.

Nelson Marlborough Health chief medical officer and paediatrician Nick Baker there has been a steady rise in vaccination levels over the past five years across Marlborough.

“The increasing demand reflects increasing community understanding of just how severe influenza can be and the importance of efforts to protect people and prevent it spreading.

Flu vaccination is especially important for anyone who has a health problem that means they are less able to cope with flu. Any condition that makes it harder to breathe and cough well makes influenza particularly severe,” he says.

“We encourage every person who is eligible for free vaccination to get this done as soon as possible, from their GP or from some pharmacies.”

Vaccination is free for pregnant women, people aged 65 or older, children 4-years-old or under who have been hospitalised for respiratory illness or have a history of significant respiratory illness and those aged more than 65.

Nick says it is especially important to vaccinate children with any respiratory illnesses.

“While the common cold can be nasty for children especially infants, influenza is much worse.

“… it’s harder for them to breathe, cough or cope with high fevers and congested noses,” he says.

“Our overall message for parents is to consider whether there is anything about their child that means they are likely to cope less well with flu or suffer more complications.”