Cyril Wise’s 34-year-old daughter Bec developed Huntington’s disease seven years ago, when she was 27.
The mother of two boys aged nine and seven now lives in an aged care facility in Wynyard, in Tasmania’s north-west.
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The state is said to have to the second highest rate of Huntington’s disease in the world per head of population, after Venezuela.
A child who is born to a person with the Huntington’s gene has a 50 per cent chance of having the gene themselves.
Everyone who has the gene will develop the disease at some stage in their life.
Mr Wise lost his wife Kaye to Huntington’s in 2014.
He said that like Kaye, his daughter was not getting the specialist care she needed and deserved.
“As a father it is is very, very disappointing and I get really emotionally upset seeing my daughter, what she is going through, it’s not a win-win situation at all for Bec,” he said.
In Tasmania, there are 150 people with the disease, and most live in the north and north-west.
The origin of the disease in the state has been traced to an Englishwoman identified as ‘Mary’, who migrated to Launceston in 1842.
Nine of her 14 children developed the disease and had children of their own.
A locum neurologist, neuro-psychiatrist and a neuro-psychologist from Melbourne fly into Devonport three times a year to run a Huntington’s clinic.
It is an hour’s drive from Wynyard, and Mr Wise said the travel was difficult for Bec.
What is Huntington’s disease?
- It is an inherited condition but symptoms typically don’t occur until middle age
- Symptoms include jerky movements, loss of bodily functions and emotional changes
- Tasmania’s north-west is a global hotspot
- There is no cure
Source: Health Direct
“It just creates too much tension on Bec’s body, Bec is absolutely buggered for days afterward,” he said.
“I do know of cases where other patients have been left in the waiting room and not been seen, because the neurologist from the mainland would miss their plane if they stayed.”
He said he did not think politicians understood their plight.
“I just honestly believe if I could stand in front of Parliament with Bec it might open their eyes a bit; 95 per cent of them don’t know anything about Huntington’s and other neurological diseases,” he said.
Sitting next to her father and struggling to speak, Bec reiterated her father’s plea.
“I want politicians [to] come see me,” she said.
Tasmania’s north struggling to recruit and retain specialists
For every person with Huntington’s, five family members are at risk.
Huntington’s Disease Association of Tasmania chief executive Pam Cummings said she was appreciative of the locum service, but said once they left, there was no support.
“Those clinicians come to the clinic and then they go home, and it is the GPs who sometimes don’t know much about Huntington’s who pick up the pieces in the meantime,” she said.
Many other conditions also rely on specialist services like neurology.
In June last year, the only permanent neurologist in the state’s north resigned, saying concerns he had raised about increased workload had been ignored.
Ms Cummings said the previous neurologist did not see Huntington’s patients, which was why it was important to have access to more than one.
Ideally, she said, they would travel to places like Wynyard to see patients like Bec.
Bernie Einoder says many specialists leave because the workload is too wearing. (ABC News: Chook Brooks)
It has taken more than a year to recruit a neurologist from the UK, but it is unclear when he will start in Launceston.
The State Government is in the process of recruiting a second neurologist.
The north and north-west of the state has for decades struggled to attract specialists.
Professor Bernie Einoder was the Launceston General Hospital (LGH) director of surgery for 30 years, and said the high workload had worn out many specialists.
“We are overworked and under-resourced and everybody is expecting us to do more with less,” he said.
“Every self-respecting individual who likes his family is clearing out, and that is what is happening.”
Professor Einoder said there was an uneven distribution of specialists.
“We have got no spinal surgeons [but] we have got half a dozen down south,” he said.
The LGH no longer has a vascular surgeon, with Hobart surgeons travelling to the north instead.
The LGH lost its accreditation for physician training in January 2017 because of an inadequate number of specialists and training opportunities for the third year of basic training.
LGH Medical Staff Association spokesman Scott Parkes said about six of the ED doctor positions remained vacant, and were being filled by locums.
Dr Parkes said the loss of training accreditation made it difficult to recruit doctors at all levels, particularly in the ED. He said the biggest problem the hospital faced was a lack of in-patient beds.
“We need to be able to improve the patient flow and improve the function of the emergency department so then we can attract and retain staff who want to come to our hospital,” he said.
“We have about a ward full of patients, mostly on average waiting for transfer to wards from our emergency department.”
Statistics show the LGH is the worst performing large regional hospital for emergency department wait times, with only 60 per cent leaving the ED within the national benchmark time of four hours, compared to the 70 per cent national average.
The length of time until most patients had departed was 16 hours 59 minutes — about five and a half hours longer than the large regional hospital average.
The LGH lost two sets of training accreditation in the past 18 months. (ABC News: Chook Brooks)
Dr Parkes said people now had to be very sick to be admitted to the LGH.
“We are pushed to discharge people from hospital earlier, or send them away from hospital earlier when our best instinct would be to admit them or keep them longer,” he said.
Like staff at the Royal Hobart Hospital, Dr Parkes said morale at the LGH was low.
“When you can’t give the care you want, it affects the mental health of staff at all levels, you just feel frustrated and sad,” he said.
Dr Parkes said the LGH’s problems were on par with the Royal Hobart Hospital, which has regular ambulance ramping and bed block.
“In 18 months’ time it will be more difficult, we may have to start making difficult decisions potentially about how much elective surgery we do because of the number of acutely ill patients who need to come in,” he said.
Relief for LGH at least a year away
The first stage of the Launceston General Hospital Ward 4K upgrade and Women and Children’s Precinct is expected to be completed in late 2019, with the development completed by mid 2020.
The State Government said the development would include 32 fully staffed additional acute in-patient medical beds, and eight new beds in the Children’s Ward.
It was unclear if the opening of the beds would be staged.
In a statement, Health Minister Michael Ferguson said he would have more to say about two neurologists at the LGH soon.
“The recruitment has been very positive and access to services for north and north-west patients will be significantly improved after decades of having between zero and one practitioner.”
Mr Ferguson also said Statewide Mental Health Services provided a case management service to support people with Huntington’s disease when they became symptomatic.
“Our clinical staff who support and treat people with Huntington’s disease in Tasmania are highly skilled and are aware of the best possible treatment and support options for this disease,” he said.
Ms Cummings said the service Mr Ferguson referred to was a social work service, and people with Huntington’s needed better access to a neurological medical service.