Thank you so much for your incredibly generous donation to the Unicorn Foundation and to the team at Tour de Cure for their incredible work.
We watched with pride the special on Channel 7 and we are so thankful for the money we have received towards our support service that has been a lifeline for thousands of NET Cancer Patients.
Please see below how your $60,000 assisted our NET Nurse activities in 2014:
NET Nurse Activities in 2014
In the short time our service has been in action our NET Nurse has conducted the following activities:
1. Telephone nurse on call service – Over 1,500 contact points
• Provides information on the disease for new patients, (and long time NETs patients)
• Pain and symptom management information
• Counselling support and referral advice
• Communication with treating teams re patient issues
• Information and advice about services, treatments, scans, disease monitoring
• Support group information
• Support visits where possible to patients who are frail, elderly, socially isolated and from non English speaking backgrounds.
• Patient advocacy where requested (attending appointment with patients)
• Support and information to caregivers
• Monitor and participate in the UF secret Facebook site – a frequently used forum for treatment information, symptom management advice and support. This activity makes up the largest time allocation in the role.
• There are on average 10 contacts per day. Most calls take 30 – 60 minutes per call, and some quite a bit longer. Facebook involvement can necessitate follow up calls when risks are identified. Patient visits are usually 3 hours including travel.
2. Data collection. – collected the below data on 200 patients
• Demographics
• Disease details
• Investigation / procedure / treatment data
• Quality of Life and anxiety / depression scales
• Needs analysis
• Collaborate with researchers to use data to enhance knowledge of NETs including the recently successful grant a Peter Mac in Melbourne "Defining the supportive care needs and psychological morbidity of patients with Functioning versus Non-Functioning Neuroendocrine tumours (NETs): Phase 1 trial of a Nurse-Led Phone-based intervention".
• Data entry takes 30 minutes per entry on average and includes not just the initial questionnaire but any follow up contacts are documented to record symptom, treatment, support issues and advice given.
3. Nurse education on disease, treatments, investigations, disease complications.
• Develop supportive relationships with oncology units where many NETs patients are managed.
• Hospital visits to provide in situ in-service. Sessions are usually 1hour or as the unit requests, having excellent feedback and often involve an average of 1 hour travel each way.
• This is important due to the difficulty non metro patients experience with rural staff who have never experienced the unexpected issues of a function NET tumour. This service aims to engage rural health services so that they have willingness to access support from an experienced NET nurse
• Established a (soon to be national) journal forum where journal articles are shared electronically with Unit Managers, to increase their nurse’s knowledge of all aspects of the disease and treatments. This involves NET nurse research and is well received.
• In the past 3 months in-service has been provided to oncology services at Peter MacCallum Hospital, Melbourne; Queen Elizabeth Hospital, Adelaide; Redcliffe Hospital, Queensland; Greenslopes Hospital, Brisbane; St John of God Hospital Geelong, Cancer Council Victoria. There are plans for more rural visits in the near future.
Just some quotes from our patients:
I would like to write on behalf of our Net Nurse Dale Long. It has been wonderful to have Dale’s expertise in neuroendocrine cancer. I was diagnosed with NETS in February 2013. I found my GP knows very little about it and if I go to see her with a problem she has to email my Oncologist to find out what to do. When I ring my Oncologist I am told by his secretary I can't speak to him as he is too busy and she tells me to go to the Emergency Department of my local hospital. It is quite frightening when you feel you have no one to turn to for help. Having Dale to speak to and discuss what is happening and getting her expert advice alleviates the stress and saves me having to go into the hospital. Thank god The Unicorn Foundation have been able to fund Dale for one year. She is there to support us in every way and we need that support. Surely one NET nurse for the whole of Australia is not too much to ask for. We really need her and I hope the government can find it in their hearts to keep funding her.
Sharron Bramwell – Wollongong NSW
Recently I had to transfer to Peter Mac for scans and test instead of my rural hospital. Thank goodness Net Nurse Dale Long met me at the hospital and showed me the way around and was able to be there for me with advice, wisdom, a smile and a cuppa to help me cope. She has an amazing history of working with NETS and at Peter Mac and I was so glad she was available for me and still is on line whenever I need a listening ear some comfort or advice. Amazing support, could not exist without her.
Denise Cockayne – Geelong VIC
I have used the service that Dale the Net nurse provides on many occasions. Just recently I had my first treatment of Lutate and she was very helpful to me during this time explaining that my reaction to it was a good sign. Explaining that it was a sign that the tumours had been hit hard by the treatment. She calls me back after I have a concern and has been a great support to me as a country patient. Let me know if I can help in any way to support your application.
Dorothy Knight – Sydney NSW
