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Treatment for Neurofibromatosis Type 2 - a rare disease

Posted By NF2warrior

"Treatment for Neurofibromatosis Type 2 - a rare disease"

About: Fiona Stanley Hospital / Chemotherapy Unit, Cancer Centre, Cancer Outpatients Clinic, Bone Marrow Transplant, Oncology, Radiation Oncology & Ward 7C Fiona Stanley Hospital / Ear Nose & Throat Patient Assisted Travel Scheme - WACHS Midwest

(as the patient),

After 10 years seeing a private specialist I felt I needed more input and in 2015 asked my GP for a referral into the public system. I saw an ENT specialist at Fiona Stanley Hospital, Prof Gunesh, who applied for me to have a treatment that is standard in the US and UK for the type and growth of tumours I have. IPA was granted and I have been on Avastin for 1 year now and my tumours have decreased in size and volume and are stable. I have my treatment at the Cancer Centre at FSH and because I am a country patient, PATS fly me to Perth and transport is provided by the FSH volunteer patient transport team who get me to and from the hospital. I have the greatest respect and gratitude for all who are involved in my treatment and care - especially the wonderful staff in the Cancer Centre. I communicate online with other people with NF2 and I recognize that our health system in Australia, while not perfect, is up there with the best.

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Responses

Response from Janet Zagari, Executive Director Transformation, South Metropolitan Health Service, South Metropolitan Health Service 5 years ago
Janet Zagari
Executive Director Transformation, South Metropolitan Health Service,
South Metropolitan Health Service

Submitted on 22/05/2018 at 5:02 PM
Published on Care Opinion on 23/05/2018 at 10:56 AM

picture of Janet Zagari

Dear NF2warrior,

Thank you so much for taking the time to share your experience of Fiona Stanley Hospital with us. It is wonderful to hear of the care and support our staff have provided you in your treatment journey. I was particularly pleased to hear that the coordination of your care as a country patient was a success. Ensuring country patients have the same level of access to care is important and is something that we have been striving to improve for our patients.

I will ensure that your feedback is forwarded to the staff in the Cancer Centre.

I wish you the best for the remainder of your treatment.

Kind regards

Janet Zagari

Executive Director

Fiona Stanley Fremantle Hospitals Group

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Response from Michele Young, REOC Lead, Executive Services, WACHS-Midwest 5 years ago
Michele Young
REOC Lead, Executive Services,
WACHS-Midwest

Submitted on 28/05/2018 at 9:17 AM
Published on Care Opinion at 9:32 AM

picture of Michele Young

Dear NF2warrior

Thank you for taking the time to write and share your story on Patient Opinion. The Patient Assisted Travel Scheme (PATS) is a great initiative that provides a subsidy towards the cost of travel and accommodation for eligible WA country residents travelling long distances to seek certain categories of specialist medical services. The PATS team do a great job in coordinating the travel arrangements for our community who require specialist care and Im so pleased that they have been able to assist you in accessing the services that you need.

I wish you all the very best and thanks again for getting in touch.

Warm regards

Michele

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