For eight long years John Crosby and his dedicated committee of Parkinson’s Disease sufferers and carers have been lobbying hard for Tamworth to get a full time Specialist Neurological Nurse (SNN), but over the last 12 months that cause has taken hit after hit, despite a unanimous vote for it at the 2017 NSW Nationals Party Conference.

Recently it was uncovered by Fairfax Media that Hunter New England Health had lost one of only two Parkinson’s Clinical Nurse Consultants (CNC) in the entire Local Health District.

The nurse resigned from her role at John Hunter Hospital, although HNEH have no plans to replace her, stating that the role was funded by an undisclosed external source which was about to expire anyway.

For local sufferers this is another large hurdle in their ongoing battle, coming just one year after it was announced the Newcastle based nurses would no longer be able to make their quarterly trips to service Tamworth and the North West due to an overstretched workload in Newcastle.

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While the nurses no longer visit the region, people living with Parkinson’s locally relied on being able to contact the nurses over the phone for support and advice on medications, an invaluable service as there is currently a minimum 12 month waiting list to see a neurologist.

“Reducing nurse numbers by one when we need at least one more is a very big step backwards,” Mr Crosby said.

“This news has gutted the local Parkinson's Support  Group, who for over 8 years have been working toward getting a specialist nurse in Tamworth.  We now see the situation getting worse not better.

“It just indicates that HNEH are not listening to what is needed in the community.” 

Hunter New England Health CEO Michael DiRienzo would not commit to funding the lost role, only to say that they “are now reviewing how we can – as quickly as possible – provide assistance to our CNC to maintain this service for our patients into the future.”

“HNEH is continuing to work with Primary Health Networks and local GPs to provide an appropriate Neurology and Parkinson’s disease service to Tamworth and the New England region into the future,” he said.

While the local Parkinson’s Support Group are “extremely disappointed” with HNEH, the same sentiment stands for local, state and federal politicians, who it seems have only paid lip service to the cause.

Following the disclosure of Inverell based Nationals Senator John Williams diagnosis in May last year, an urgent motion to see the funding and installation of several SNN positions in regional NSW was voted through unanimously, although since then no further action has been taken.

Following that motion passing Senator Williams told The Leader “now that it is policy, if the Government does not take it up the leaders, Barnaby Joyce and John Barilaro, have to explain to the party why it was not put in place.” 

At the time Mr Crosby and the Support Group had high hopes for action, although they have since lost hope in the Party’s words.

“It was an ideal opportunity but no action has been taken, and now we have lost a nurse rather than gain more,” Mr Crosby said.

“What is the point in passing a motion if they are then going to do nothing about it.

“The entire thing has just been incredibly disappointing, when the benefits of SNN nurses are well documented.” 

The 2010 NSW Shoalhaven Project showed that a single specialist nurse saved between $28,618 and $189,754 per year by reducing the number of required medical appointments, while also saving approximately $133,755 in unplanned hospital admissions, and up to $314,107 in reduced days PD patients spend in hospital.

“We will now have to wait to see what comes out of the next budget – but we will keep fighting,” Mr Crosby said.