Long wait for NZ’s MS patients ‘not ideal’
Christchurch man Eamon Peyn needed to know what was happening when he became struck by recurring pins and needles, and overwhelming exhaustion.
The fatigue had forced him to drastically cut his hours of work as an IT professional and he was plagued with worry.
Peyn was told he faced a minimum six-month wait for a MRI scan and three to four months to get a diagnosis from a specialist.
‘‘It left me feeling in quite a lot of despair because six months of not knowing what was going on, I don’t think I would have been able to deal with it very well,’’ he said.
Unwilling to wait, he drew on his savings to pay $1400 for a scan and $500 to see a specialist privately.
It was bad news – damaged nerves in his brain were likely to be a result of multiple sclerosis (MS) – but Peyn said it was a relief to have a diagnosis.
The 43-year-old has unwillingly found himself in the midst of critical national staffing and funding shortages for the country’s 4000 MS patients.
MS is a progressive disease of the central nervous system for which there is currently no cure.
MS New Zealand (MSNZ) vicepresident Neil Woodhams said it was ‘‘disgraceful’’ New Zealand, with 37 full-time neurologists, had just over half the number needed for the population.
‘‘The shortage of funding for these specific medical professionals is leading to increased waiting times for both people diagnosed with MS, and those awaiting neurology appointments to determine a diagnosis.’’
The next hurdle for Peyn was access to revolutionary new drugs funded by Pharmac, capable of preventing permanent disability. Patients are required to have two distinct physical episodes to meet the strict eligibility criteria for the medication. Peyn has had one.
Neurologist Dr Debra Mason said damage to nerves detectable with MRI scans could happen as often as once a month, with each incidence bringing a patient closer to permanent disability.
Pharmac had not kept up with improvements in imaging that allowed faster diagnosis and treatment, she said.
Peyn said the drugs were ‘‘prohibitively expensive’’ at $2000 each month, but he had no choice but to accept the situation.
‘‘It is a bit of a concern . . . but it’s just one of those things that you have to deal with.’’
Mason said there was no doubt people were needlessly missing out and would end up with disabilities that could have been avoided.
Those who did receive the new drugs increased the workload for those managing them, who did not have the resources to cope.
‘‘With the new drugs we have to see these patients, counsel them on drug management, they have to come in for drug infusions, I have to see them on a six-monthly and 12-monthly basis,’’ Mason said.
Canterbury District Health Board (DHB) acting chief of radiology Dr Mike Hurrell said the five-month waiting time for a routine MRI scan was ‘‘not ideal’’, but was the result of an increased population and a commitment to provide patients with the new drugs.
A Pharmac spokesman said a review of eligibility criteria for MS drugs was not being considered, but Pharmac was open to looking at future changes.
Health Workforce New Zealand (HWNZ) group manager Claire Austin said neurology was not on the Ministry of Health’s voluntary bonding scheme as a hard-to-staff specialty, but may be included next year.
As of September 2016, HWNZ funded the training of three new neurologists and DHBs were able to recruit neurologists from overseas.