Helen Herbert can still remember sending her son off to school that day with just a sore throat. By the time he got off the school bus that afternoon, she knew something else was definitely wrong.
She was right. He had rheumatic fever, leaving a mother feeling livid and let down by a health sector that hadn’t warned her how devastating “just a sore throat” can be.
She has been a passionate rheumatic fever campaigner ever since – first in her home community of Whangaroa, then wider Northland and beyond, and this year, she became the national co-coordinator for the Ministry of Health’s Rheumatic Fever Prevention Programme.
It all began with rheumatic fever levels peaking at internationally high levels at the turn of the millennium in the small Far North community of Whangaroa.
Helen Herbert’s son was eight when he got rheumatic fever. He is now 21 and the family has this year just celebrated him being given the all clear to no longer have the painful monthly antibiotic injections required to keep further rheumatic fever, and the risk of major heart damage, at bay.
“It is very traumatic for the kids when they first start – and for their families,” says Herbert. “My son packed his bags heaps of time to run up the hill. He told me he was running away from home and he’d come back later on.”
Herbert says it was devastating in those early days realising just how many of the community’s children were getting rheumatic fever and all for the lack of treating a sore throat.
A driven community
The Whangaroa Rheumatic Fever Prevention Programme was launched on Waitangi Day 2002 in response to that deep community concern with the support of an equally concerned Northland District Health Board public health team.
Herbert, who had taught music and been a teacher aide in schools, was on board from the start as one of the two kaimahi employed by Te Runanga O Whangaroa to promote and carry out the throat swabbing and rheumatic fever awareness programme three days a week at the six local schools.
Sue Dow, a communicable disease nurse educator at the DHB’s public health unit, also involved from the early days, says at the time there were mixed views on throat swabbing interventions. But when the options for action were outlined to the community, they chose the community-driven intervention and then got strongly behind it.
And the campaign worked. The last rheumatic fever case was notified eight days after the intervention started and then no more cases for ten years (a case may just recently have been notified but the source is still to be confirmed).
Putting up your hand in class to get your sore throat swabbed is now normal routine, and if kids get sick in the holidays, families head up to the local hospital instead. Whangaroa knows that sore throats are serious.
Dow puts the remarkable success of the Whangaroa intervention down in no small part to Helen Herbert herself.
“She’s very passionate about her job and her community, and that’s what actually made it work up there in a big way.”
Herbert says as a non-health professional, having good clinical expertise behind her is essential, and from the start, she’s worked with Sue Dow, Northland Medical Officers of Health Jonathan Jarman and Clair Mills and leading rheumatic fever researcher Professor Diana Lennon.
Her own expertise quickly grew beyond swabbing throats – though she has done countless thousands – to engaging everybody from teenagers to GPs in getting the message home that sore throats matter.
For example, Whangaroa quickly got buy-in from primary school families – 100 per cent consent from the area’s five primary schools – but it struggled to get local high school students onboard with only a 28 per cent consent rate. It was too uncool for teenagers to seek whÄnau consent for throat swabbing at school.
“Then we asked ourselves what are the most important things to teenage kids. Well, themselves, their music, and their tummies,” recalls Herbert.
So they started again with a promotion campaign – including an assembly visit by a rheumatic heart disease patient to show their big scar from heart surgery – and a very appealing prize draw for kids who got their consent forms back the next Friday. Within a week, they had 80 per cent of the kids signed up.
Resources and resourcefulness
A decade ago, there were also few rheumatic fever resources available to promote awareness.
“Public health nurses only had printed off fact sheets, which weren’t lively or enthralling to read,” recalls Dow. As educator, she got the job to help develop attractive flip-charts and the Sore throats can break a heart pamphlets that set out simply and attractively the take home messages of the Northland-wide awareness campaign.
Public health nurses’ major rheumatic fever focus remains on looking after children and young people once diagnosed – about 130 in Northland – but Dow says they also have big roles in throat swabbing schools, including supporting the swabbers, taking child referrals, and helping track down families to ensure children with positive swabs get their antibiotics. And always, grabbing the chance to educate people that sore throats matter. “Anywhere we can get a plug in really.”
In 2007, Herbert was seconded to Kaikohe for six months to train kaimahi and support getting their school throat swabbing campaign underway, and then in 2008, she got the regional project co-coordinator position at Ngati Hine Health Trust and started taking calls from other regions keen to find out more about the Whangaroa model.
Ngati Hine won the national coordination service contract for the $24 million Rheumatic Fever Prevention programme, and Herbert’s role is to keep all seven regions with high risk communities connected and working towards a consistent form of messaging, reporting, and training.
Success, targets and setbacks?
The Government recently set a target of reducing the incidence of rheumatic fever cases by two-thirds by 2017. It will be hoping to replicate Whangaroa’s success.
Whangaroa was so successful that Herbert says midway through last decade, the community even managed to go a whole year without any strep throat being detected.
“I was saying to my colleague, ‘I can’t believe it – we’ve got no strep – we’ve done ourselves out of a job’.”
But Strep A returned and positive swab numbers rose to levels as bad or worse as when the campaign started. While rheumatic fever has been kept at bay by Whangaroa’s swabbing campaign, Herbert is concerned that other socio-economic determinants like overcrowding, poor housing, and poverty means we may be seeing a trending upwards of Strep A and rheumatic fever nationally.
Likewise, Dow says she would like to say that the numbers of children registering with rheumatic fever were falling in Northland.
“We’d like to say yes, but no… we’ve not seen a huge change at this moment.”
She says the Whangaroa project has worked “remarkably well” but Kaikohe had not been as successful to date and the Whangarei and Kaitaia programmes – only initiated this year – were still in their infancy.
“If we can eradicate it, we certainly will, but it’s a long hard road and linked quite closely to environment and overcrowding and poor, damp, and uninsulated housing.”
Maxine Shortland, Herbert’s manager at Ngati Hine, sees the whÄnau ora approach as a way of helping families work through issues contributing to strep throat risk, including referring families on to services that can assist and alleviate issues like housing. Dow says public health nurses also have strong links with WINZ and health housing and insulation programmes to get their families put on the list for help.
“And hopefully, eventually get insulation and warmth.”
Meanwhile, Herbert says one thing that they have learnt is that school communities without swabbing programmes don’t know that sore throats really do matter.
“I’m definitely an advocate for these throat-swabbing projects as a means of getting the message through.”
THIRD WORLD STATS SHOCK NURSE INTO ACTION
Wielding a big needle once a month doesn’t make Sandra Ball many friends with her young rheumatic fever patients.
The district nurse grits her teeth as she injects the painful but necessary thick antibiotic paste deep into the child’s thigh or buttock.
“It drives me nuts because it’s a really nasty procedure,” she says.
“Usually, the kids leave limping, and you know you’re not their best friend as it hurts, but it keeps them well.”
For most of her 20 years as a district nurse in Opotiki, she accepted as “pretty much normal” delivering monthly penicillin injections to stop these kids facing further bouts of rheumatic fever and risking major heart damage.
But then she got a bee in her bonnet about so many kids getting rheumatic fever in the first place. She became one of the driving forces behind Opotiki in 2009 becoming a pilot school in the throat swabbing programme for the Eastern Bay of Plenty Primary Health Alliance. Other programmes have followed in Kawerau, Murupara, and most recently, a Tuhoe project. Ball now splits her time between district nursing for the Bay of Plenty District Health Board and being clinical lead for the Eastern Bay of Plenty throat swabbing programmes.
Third world stats
Ball, a mother of five, says it was her postgraduate studies that opened her eyes to the scale of the rheumatic fever problem in her community. A diploma paper asked her to look in-depth at a prophylactic treatment she carried out in her practice and she chose to look at the much-hated bicillin treatment.
“It was then that I realised our (rheumatic fever) figures here were shocking, huge … third world stats!”
Around the same time, a 2008 research project by public health physician Dr Belinda Loring, for Bay of Plenty’s Toi Te Ora Public Health Service, revealed that the true number of cases of rheumatic fever was double the official numbers registered and 90 per cent of the cases were MÄori. It was found that a child in Murupara had a one in 39 chance of developing rheumatic fever during their childhood and a child in Opotiki one in 70. These compared with a one in 10,000 chance for the average PÄkehÄ kid around the country.
The statistics hit home hard and the district health board’s Toi Te Ora-Public Health Service started a series of major initiatives to increase community awareness that ‘sore throats matter’, including a web page, major newspaper and radio ad campaigns, resource material, and educating local GPs and practice nurses about the Heart Foundation rheumatic fever guidelines. Coordinating rheumatic fever initiatives alone is now half of Toi Te Ora communicable disease nurse Lindsay Lowe’s job.
Ball still had a bee in her bonnet, and with the motivation of ‘fabulous paediatrician’ John Malcolm and the word from Belinda Loring that funding could be available, she started lobbying her local primary health organisation (PHO) to back a school throat swabbing project modelled on Whangaroa’s intervention.
A cry for help
She made the very most of the Opotiki district nursing office being just down the corridor from the office of the PHO manager.
“So every time we did a bicillin and the child cried, you’d whip round the corner and say ‘Did you hear that child cry? That’s preventable. It shouldn’t be happening.’ and kind of planted the seed with them.”
Not surprisingly, the PHO came in behind her, and in mid-2009, successfully sought DHB funding for Opotiki to be a school throat swabbing pilot project for the Eastern Bay of Plenty area using a local iwi provider.
With “immense” support from the DHB’s public health service, including publicity advice and ensuring proper research evaluation was imbedded in the project, the Opotiki pilot programme got underway in term three of 2009, with Ball as part-time clinical lead.
There are now four programmes underway covering more than 4000 pupils in 26 low decile schools. In term two, nearly 3500 swabs were taken, with 12 per cent coming back positive, prompting antibiotic prescriptions to keep rheumatic fever at bay.
Ball says an important part of the programme was engaging the GP practices they rely on for prescribing, at a nominal fee, the essential antibiotics. And to prescribe the ‘best practice’ once a day amoxicillin for ten days rather than expecting stressed mums and kids to remember to take antibiotics three times a day.
As clinical lead, Ball trains and supports the nine community health workers – mostly local young mums but also one “amazing” 73-year-old Nan – who do the day-by-day school visits offering, twice-a-week, every kid in every class the chance to put their hand up and say they have a sore throat that needs swabbing.
The big picture
Awareness promotion by the community workers, including using popular resources like the Heart Foundation Bro’ Town comic series, have helped bring the sore throats matter message home. Another promotion was the use of localised pamphlets for Opotiki, Kawerau, and Murupara, produced by Lindsay Lowe and the Toi Te Ora Public Health Service team, each featuring a home town kid on the cover who’d had rheumatic fever – two of them resulting in heart valve surgery. Ball says it means a lot to local kids that the pamphlets feature someone they know.
“The kids are absolutely fantastic … they are really, really good, and they’ve got the message that sore throats matter.”
To date, rheumatic fever has not been entirely eliminated in the throat-swabbing communities, but research evaluator, Russell Ingram- Seal, assures Ball the numbers are trending downwards.
“I kind of get reminded not to get disheartened because of the big picture stuff – the fact that the kids do have the message really strongly now and the families too really have it on board. In the big picture, what we are doing is working.”
SOUTH AUCKLAND PIONEERING NEW MODEL
It was in South Auckland that school-based sore throat clinics were first trialled in New Zealand.
More than a decade later, the region, with the highest rheumatic fever burden in the country and about 500 young people on the register, is being funded to roll out clinics again. Following a pilot last year, the South Auckland clinic model includes a public health nurse per 400 children to address wider health issues.
The initial 1998-2001 randomised-controlled trial of sore throat clinics was lead by Professor Diana Lennon of the University of Auckland and involved about 24,000 children attending 53 historically high risk schools for rheumatic fever. Pupils at the 26 control schools received usual GP care and pupils at the 27 sore throat clinic schools received school-based education and throat-swabbing by community health workers, with public health nurse follow-up for positive swabs.
The major research project, funded by the Health Research Council, Heart Foundation, and Ministry of Health, led to a 28 per cent reduction in rheumatic fever.
Lizzie Farrell, clinical nurse manager for Kidz First public health nurse team at Counties Manukau District Health Board, was part of the project and experienced the frustration of it taking another decade of lobbying, and the efforts of the MÄori Party, for funding to be found again for sore throat clinics in South Auckland.
“As a public health nurse, you feel a sense of despair when you see young people whose potential is blighted by an easily prevented disease.”
Farrell teamed up with Lennon again last year for a research project piloting a public health nurse-led, school-based primary health care programme at
Wiri Central Primary School that, along with daily health worker throat swabbing, included nurses assessing skin infections and working with the wider family.
This has led to a different model of sore throat clinic being offered in South Auckland.
The National Hauora Coalition won the Ministry of Health contract to fund throat swabbing three days a week in 18 schools in Counties Manukau DHB, with the first clinic launched in late July at Rongomai School.
Counties Manukau has stepped in to fund further child health services, so the sore throat swabbing can be offered five days a week and for one public health nurse per 400 children to offer wider child health services to pupils and their siblings.
Farrell says the model is not totally school-based, with the school to be the hub for working with the school’s wider community, including issues like healthy housing.
RE-EDUCATING NURSES & GPs
It’s not just parents and kids that need to know “sore throats matter” but also the doctors and nurses the families front up to.
“So when you get an awesome mum taking their child into the doctors with a sore throat, they don’t get someone pecking at their throat and saying ‘oh no, that’s not red enough, it can’t be a strep throat’,” says a frustrated Sandra Ball. “I think, crikey dick, if you knew how hard we had to work to get them through that door, you’d praise them and educate them.”
Ball says it’s not a blame game as for much of her 20 years of mothering and nursing, she too was trained, and trained others, to think sore throats were probably viral, needing rest not antibiotics. She believes that message has come at a cost, with rheumatic fever in her community hitting kids with great mums and great families.
“They are really diligent families at looking after their children, and they wouldn’t want to think it was about poverty and they do live in good houses. There’s more to it…
“When you are a mum on a budget and you cart your kids in with a sore throat and that’s the message your health professional gives you, then the next time your kid gets a sore throat, you are going to do exactly what your health professional tells you – which is rest and maybe paracetamol and fluids.
“It works for most of our population, but we just missed that in some of our communities, overcrowding and higher strep levels means it’s a heck of a lot safer to take sore throats more cautiously.”
Which means reaching for a throat swab and prescribing antibiotics straight-off for those at high risk of having strep throat.
Helen Herbert (pg4) agrees it is important but sometimes challenging, re-educating GPs in high risk areas to change longstanding prescribing habits and approaches to sore throats.
“I do understand that for years they’ve been told ‘don’t prescribe’,” says Herbert.
Communicable disease nurse educator Sue Dow acknowledges there was some nervousness that the Northland campaign would lead to over-prescribing or unnecessary prescribing of antibiotics.
“But we’ve stuck rigidly to Heart Foundation guidelines. If MÄori and Pacific aged between 3 and 45 present with a sore throat, we treat that (seriously). Because we don’t know that if we don’t, it won’t be the next case of rheumatic fever.”
Dow has also been working to bring home the same message to Northland nurses across the spectrum from paediatric wards to general practice.
“It hasn’t been fast, it’s been slowish, but I think we are making inroads now into nursing awareness that sore throats matter and to get them treated as quickly as possible.”
What is it and what does it do?
- Rheumatic fever is triggered by a ‘strep’ throat – otherwise known as a Strep A or group A streptococcus (GAS) infection – with 10–20 per cent of sore throats caused by GAS.
- GAS is very infectious and can be transferred through droplets from coughs and sneezes (or indirectly through droplets contaminating food).
- Most ‘strep’ throat infections get better without developing into rheumatic fever, but for a small number of people, it triggers a strong immune system reaction leading to inflammation of the heart, joints, brain, and skin.
- Rheumatic fever is nearly always preventable with early detection and treatment of strep throat with a ten-day course of antibiotics.
- About 70 per cent of children who get rheumatic fever will have some heart damage, and if the inflammation scars the heart valves, the person can develop rheumatic heart disease and may require heart valve replacement surgery.
- After having rheumatic fever, children must have painful monthly intramuscular penicillin shots until they are 21 to prevent further bouts of rheumatic fever (or longer, if they develop rheumatic heart disease).
How severe is the problem?
- New Zealand’s rheumatic fever rates are now 14 times higher than any other OECD country.
One third of New Zealand children have a 1 in 250 chance of a preventable damaged heart by the end of school.
- The rates of rheumatic fever for MÄori and Pasifika children aged between 5 and 14 are between 20 and 40 times higher than other Kiwi children of the same age.
- The rates in high risk areas are thought to be a combination of crowded living conditions, difficulties accessing health care, and lack of awareness that ‘sore throats matter’.
- Heart Foundation guidelines recommends throat swabbing any Maori or Pacific patient aged between 3 and 45 who presents with a sore throat and prescribing them antibiotics straight away if they meet strep throat criteria.
- A research project in Northland in 2010 scanned the hearts of 636 Kaitaia children and found seven with previously undetected rheumatic heart disease and 13 with inconclusive or borderline rheumatic heart disease.
- There are around 140 deaths per year from rheumatic heart disease.
Heart valve tragedy
The tragedy for cardiac nurse practitioner Andy McLachlan is that 50 per cent of his Middlemore Hospital valve clinic patients are there thanks to a childhood sore throat.
Their untreated strep throat led to rheumatic fever and then on to heart valve failure, major surgery, and often a metal valve replacement, requiring them to be on warfarin for the rest of their lives.
“You can imagine at 16 – your mates about to start their life, their career, join the army, whatever – and you are suddenly told you’ve got to have a major operation, a big scar down your chest, and you need to take these pills and have blood tests for the rest of your life.”
“It can be a very challenging time. We have a lot of people who basically give up and can’t cope.”
The consequence of that can be a big stroke in their 20s and they become even more disabled, or die.
He adds that some people do very, very well, but others do very poorly.
“I must admit it’s a very somber clinic … it’s the valve clinic that makes me lie awake at night thinking about things.”
Rheumatic Fever Prevention Programme history
South Auckland randomised trial of school-based throat swabbing led by Professor Diana Lennon.
Whangaroa school throat swabbing project begins and other community projects follow in Kaikohe (2008), Opotiki (2009) and other high prevalence areas.
Heart Foundation rheumatic fever guidelines developed advocating throat swabbing and antibiotic prescribing for high risk patients with sore throats.
Ministry of Health advised to continue support for Healthy Housing programmes as “vital” and to put sore throat clinics in all high risk schools in New Zealand.
Government announces $12 million over four years for Rheumatic Fever Prevention Programme, including new school-based throat swabbing programmes in high-risk areas (concerns raised in Counties Manukau DHB at low share of funding for their high level of disease).
- Government announces doubling of rheumatic fever prevention campaign funding to $24 million, including community awareness raising, health professional training, and programme evaluation.
- Professor Diana Lennon advocates continuation of Healthy Housing programme funding as vital (not funded under RF Prevention Programme).
- Six new throat-swabbing initiatives funded by RF Prevention Programme involving 5000 children and 38 schools now underway in Porirua, Whangarei, Flaxmere, Kaitaia, South Auckland, and the Tuhoe area using local iwi and community health providers.
- More than 4700 swabs taken in past six months – on average about 10 per cent tested positive and were treated with ten-day course of antibiotics.
- Three more programmes involving 20 more schools due to start in October.