Rheumatology patients with inflamed joints are being forced to suffer at home, a new report warns.
The report, published in the New Zealand Medical Journal, found nursing levels were below acceptable standards at all 16 rheumatology services across the country.
Two services, Northland and Tairāwhiti, did not even have any nurses employed.
The report’s author, Prof Rebecca Grainger, said rheumatology services were being overlooked and more resources were needed.
“The thing that I’d like to emphasise is, that although we’re definitely short of doctors who lead the team and the service absolutely needs them, addressing the nursing shortages and the huge variability across the country is also an extremely high priority because healthcare works in teams.”
The report, ‘Rheumatology services in Aotearoa New Zealand’, authored by Grainger, Valerie Milne and Nicola Dalbeth, looked at whether services met the endorsed service standards of Arthritis New Zealand and the New Zealand Rheumatology Association.
The report found generally services did not meet standards across the country.
The report described inflammatory and autoimmune rheumatic diseases (IARDs) as systemic diseases often manifesting with joint inflammation, systemic inflammation and organ dysfunction that could result in organ failure and long-term disability without optimal management.
The diseases could seriously affect the social and economic wellbeing of a person and most had no cure.
Best health outcomes were more likely to be achieved with specialist care, led by rheumatologists and supported by nurses and allied health professionals, along with access to advanced imaging and therapeutics, it said.
Grainger said patients had told her before they get a lot of emotional support, and support for behaviour change and self-management, from nurses.
“So I was particularly disappointed to see the high variation and overall low FTE [full-time equivalent] for nursing staff across the country.”
Grainger said long-term condition management that happened mainly in outpatient clinics was not people lying in hospital beds, so it was “easy unmet need not to see”.
She said understaffing meant fewer people in significant pain were being looked after.
“The burden is carried entirely by the patient and their whānau and it’s indirect costs like underemployment or loss of employment or pain or impact on personal relationships or being involved with your family etc. But the system doesn’t count that.”
The default care for the speciality was in public hospitals, but Health New Zealand/ Te Whatu Ora did not have any stated expectations for what service levels and types of services New Zealanders could expect to get in hospital, the report said.
Grainger said there had never been a definition of what a rheumatology service should have and there was no national network for rheumatology as there was with other conditions.
“So all the services have just developed organically in their own settings, and because we’re largely a non-acute service, we often get overlooked because if you’ve got people piling up in A&E or medical teams get 25 admissions every night those teams get the extra resources.”
Grainger said Te Whatu Ora needed to be clearer about its expectations for rheumatology services.
“I think we do a good job with what we’ve got but we just don’t have enough capacity to see people in a timely fashion.”