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Demanding a better deal for Parkinson’s Disease in QLD

Parkinson’s Queensland, your state-wide representative body, has mounted an important campaign to lobby the State Government to ensure people living with Parkinson’s disease in Queensland are given a fair go. A State Election will be held in early 2015. This affords us the opportunity to STEP UP our campaign and voice our concerns regarding the inadequate services provided to people affected by Parkinson’s in Queensland.

  •  It’s time that people living with Parkinson’s in Queensland are valued and heard!
  •  It’s time that governments stopped passing the responsibility of customised care for people living with Parkinson’s from federal level to state level and vice-versa.
  •  It’s time that Parkinson’s disease was recognised as a priority under Australia’s Chronic Disease Strategy, and
  •  It’s time that the Parkinson’s family had access to specialised neurological nurses.

We have already contacted the 89 sitting members of the Queensland Parliament, but we need your assistance to contact your local member (and the Qld Health Minister Lawrence Springborg) to voice your concerns and to put Parkinson’s disease at the forefront of chronic illnesses in this country. It’s time for action!

HOW YOU CAN HELP:

  1. A sample letter is provided below for you to redraft, personalise your own journey and send to your local member and the Qld Health Minister.
  2. Click here to download an information document showing important statistics regarding Parkinson’s disease in Queensland and demanding a better deal for Queenslanders.
  3. Send this document with your letter to your local member and the Qld Health Minister. (Don’t forget to let us know if you receive a response from your local member).
  4. Show your local member and the Qld Health Minister how passionate you are for people living with Parkinson’s. Follow them up if you haven’t heard back from them. With the Queensland Election due in the first quarter of 2015 time is of the essence to lobby for Parkinson’s disease. Please send these letters TODAY without delay!

Will you help us to make a difference and fight against Parkinson’s disease together?
The Management Committee and I are fully committed to keeping the pressure on the Newman Government and the Opposition to seek their commitment for Parkinson’s Specialist Nurses in Queensland.

Yours sincerely,
Helen Crew
Chief Executive Officer

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SAMPLE LETTER

Insert date
Address block

Dear (insert name)

We represent 17,000 Queenslanders living with Parkinson’s disease, carers living and supporting people with Parkinson’s disease (PD) and healthcare professionals who care for them. Many of these people live in your electorate.  The chances are that you probably know some of them.  The statistics are staggering.

The lifetime costs of someone with Parkinson’s disease is $144k, second only to Cancer at $165k (Deloittes Access Economics, 2011)

  • The cost to the Queensland economy of Parkinson’s disease in 2013-14 was $155.1m (ABS,2014)
  • Health system costs for people with Parkinson’s disease are rising at 6% per annum (AIHW,2011)

Parkinson’s is a chronic, progressive, complex, disabling neurological condition which currently has no known cure. The four key symptoms are tremor, rigidity, slow or impaired muscle movement and postural instability, with literally dozens of complex, secondary and non-motor symptoms including depression and anxiety. Those diagnosed with PD can often live for many years with the disease but require constant care and medical attention, expensive medications and medical equipment.

Typically the disease manifests in patients aged around 60 years; however, 10% of those diagnosed will be under the age of 40 and 20% under the age of 50.

Parkinson’s is more prevalent than prostate, ovarian and cervical cancer or leukaemia.

  • One in five people with Parkinson’s is of working age (15-64).
  • Of particular concern to policy makers is the sobering fact that Parkinson’s prevalence is increasing at around 2-3% per year.

Despite the growing numbers of Australians diagnosed with PD, successive governments have failed to address some fundamental issues affecting the lives of patients and their families.

What we are asking:

  1. A better deal for Parkinson’s through adequate recognition and ongoing funding: the attached information sheet demanding a better deal for Parkinson’s disease in Queensland spells out some specific needs
  2. Establishment of a Parkinson’s Nurse Specialist Service, to be deployed throughout the State of Queensland
  3. National recognition of PD as a priority chronic disease
  4. Address the special challenges of people younger than 65 who contract PD
  5. Community and health system awareness of PD needs to be improved, including nurse training
  6. Extended Care Packages to cater for PD’s complex needs.

As my (local member or you could put here “as our Qld Health Minister”) I am seeking your support for these important issues during the upcoming election campaign and in the next State Government should you be elected. We look forward to meeting with you soon to discuss your views on these important community health issues.

Yours sincerely
(your name)

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