Cancer Voices Advocate in NSW Parliament

Kathy Smith was elected at the March 2015 election in New South Wales and is now the member for the Gosford Electorate.

Ms Smith recently gave her inaugural speech in the Legislative Assembly. 

We have provided an excerpt from this speech for those people interested in           the consumer experience of cancer services and the why we advocate for improved access. While Ms Smith is talking about the Central Coast many of the same issues apply to the Capital Region around Canberra. 



Earlier, in 1996, I had been diagnosed with cancer and during treatment I had become aware of an elderly lady who had to travel from Wyong to the Royal Prince Alfred Hospital for radiotherapy treatment each day for six weeks. She travelled by bus and train, and what torture that must have been for her. I was living in Hornsby at the time of my diagnosis and I was fortunate enough to be able to afford private radiotherapy treatment only 10 minutes away from home and my place of work. Silly or not, I was left with a feeling of guilt knowing that this much older lady was having to struggle to travel for treatment while I could be driven for mine without any effort on my part. 

On moving to the Central Coast, I was appalled to find that the only change to the local situation concerning radiotherapy treatment was the establishment of a private facility. However, that facility cost cancer patients thousands of dollars if they were to have treatment locally rather than travelling for public—that is, no cost to patient—treatment. As we were in a low socio-economic area, this was an impossible situation for some and many people were incurring debt to pay for treatment. That debt would mean many years of repayments and many years of depriving themselves in order to make them. Others were forgoing this lifesaving treatment altogether in the hope that the doctors were wrong. 

Being a person who always spoke up for the underdog and who took on the battles of those not able to fight for themselves, it was inevitable that I would do something to draw attention to this dreadful situation and a group of us began campaigning for the provision of public radiotherapy locally in 2006. It was an intense campaign, and it was only me and my very loyal and beautiful friend Kimberly Bates who continued through to the end. We had support from the then members for Wyong and Gosford, David Harris and Marie Andrews. In April 2010, former Prime Minister Kevin Rudd and Premier Kristina Keneally came to Gosford to announce joint State and Federal funding of more than $38 million for the construction of the Central Coast Cancer Centre, which of course included the public radiotherapy facilities for which we had battled so hard. On that day I had been discharged from hospital following the removal of a mouth cancer for less than 24 hours and Mr Rudd must have thought I had a very unusual way of speaking. 

The Prime Minister praised the actions of consumer advocates for bringing the problem to the Government's attention. He pointed out that even though politicians think they know what is needed by the community this knowledge does not always tally with what the public really wants. It had been made very clear to us by senior politicians at both State and Federal levels that without the public action the Central Coast would not have been in the running for public radiotherapy for many years. As I recall, we were number seven on the list, so public advocacy works. Today I am pleased to report that the number of people on the Central Coast receiving lifesaving radiotherapy has increased dramatically—I understand by about 22 per cent. This is not the number of people deciding to be treated locally rather than travelling for treatment; this is an increase in the number of people who previously would not have had any treatment. It is impossible to say how many of these people would have missed out or who would not have survived under the previous arrangements. However, statistics demonstrate what a tremendous investment by the Labor Government in cancer survival this public facility has been. So, fellow members, let us all listen to the public advocates in our area when they come to us with an issue. Many lives may be helped. 

The radiotherapy campaign on the Central Coast also introduced to me broader State and national issues that were in need of cancer consumer advocacy. Cancer directly affects one in three of us, but many more indirectly when our friends and family are impacted by this disease. While I had been campaigning on the Central Coast I had also been working as a consumer advocate with the Cancer Voices movement in Australia. Cancer Voices is the largest truly independent, non-funded cancer consumer organisation in Australia. I became the chair of Cancer Voices NSW as well as an executive committee member of Cancer Voices Australia. During my time with Cancer Voices, many battles were fought and won at both State and Federal levels. There is still much to be done in the cancer area, but I came to realise that the time had come to return to my own backyard and to work to the best of my abilities to continue to improve the lives of people on the Central Coast. There was never any question but that that would be done with the Labor Party.

Nurse Endoscopy

In June I attended the Victorian Health Care Quality Association showcase on award winning innovative practice. My previous report is on the HCCA blog.

The innovation showcase was an event put on by the Victorian Healthcare Quality Association, the Centre of Research Excellence in Patient Safety, the Victorian Department of Health and the Australasian Association for Quality in Health Care. It was held in St Kilda over two days, and show cased quality improvement initiatives which have won major awards across Australia over the previous 12 months

Sylvia Constantinou, a Nurse Endoscopy at the Austin Hospital, gave an overview of the nurse endoscopy services in Victoria. This is related to the Health Workforce Australia work on Extended Scope of Practice for health professionals.

In the state of Victoria endoscopy nurses are advance practice nurses and have been credentialed to deliver this service. They scope independently and with access to gastroenterologists. They are not nurse practitioners. This is a new pathway for nurses in Australia but has been happening overseas for some time (the UK has been doing this for 20 years.)

Why nurse endoscopists?

Bowel cancer is a preventable disease. Early detection results in cure. There has been a bowel cancer screening program put in place but there I an increasing number of requiring screening with a colonoscopy. There is a growing awareness in the community of familial links. Yet with this awareness it is the second most common cancer in men and women in Australia.

Austin Health was part of the National Bowel Cancer Screening Program since 2002, when the pilot. In Victoria there were 188,000 screened. 6000 were faecal occult blood positive. Of these one third will show cancerous cells.

This year there will be 4.8 million people eligible for screening.

Austin, Alfred, Monash and Western have all been implementation sites as part of Health Workforce Australia program. The Victorian Government funded the State Endoscopy Training Centre (SETC) and the goal is to train 15 nurse endoscopists to work at ten public hospitals.

The Austin Hospital has a large gastro hospital and perform almost 3000 colonoscopies per year with more than 2000 people waiting. At the Austin 12% of colonoscopies are completed by the There are 29 doctors and colorectal surgeons and they perform 79% of the colonoscopies

There are two nurse endoscopists in Victoria and independently practices and there are three trainees as part of the HWA project. The theoretical training is provided by University of Hull in the UK.

Austin Health have a useful FAQ on nurse endoscopy online.

It seems clear that there is a role for nurses working in this area with extended scope. We need them to be safe and procedurally efficient. We also need a career path as well as need for education, support and supervision.  With the demise of HWA I hope this program of work is not shelved as the functions are absorbed into the Department of Health

Darlene Cox

A wish list for Canberra's Integrated Cancer Centre

This post has been adapted from a piece that Val Lee and Denis Strangman wrote together in November 2010.  At the time they served as HCCA cancer consumer representatives on official ACT advisory committees associated with the planning for the new Centre.

The architects are about to get their heads down and come up with plans for a new cancer centre to serve the ACT and surrounding regions.  Some preliminary sketches have been drawn up and planning meetings have been held.  It is very important that the Centre "gets it right" from the start and develops as a truly patient-centred facility.

The proposed location will be between the current radiation oncology area at Canberra Hospital, the emerging under-cover parking station, and behind the existing Psychiatric Services Unit, which will eventually have its own new building.

In an endeavour to identify the wishes of the Canberra community, particularly those who have used the cancer services recently and may do so in the future (which could include one in three of the population who might be affected by cancer), the Health Care Consumers Association of the ACT held a public meeting on 29 November. 

At this early stage of the design we have a basic wish list in mind.

First – the centre must be patient friendly and be designed around the convenience of the patient, particularly those who are visiting it in an unwell situation.

Second - it must be a pleasant environment, for the benefit of the patients and the staff. Canberra has an inherent difficulty in attracting skilled medical and radiation oncology staff, so the working environment needs to be a whole lot better than other cancer centres that are competing with us. We can’t bribe the weather bureau to falsify Canberra’s winter temperatures so we have to counter the pull of the sun and the surf by superior and generous working conditions.

Third – patients should not be asked to walk long distances to get from where they register to where they are treated. We understand that one key objective is to make it an “integrated” centre but it has to work around a fixed given and that is the bunkers where the Linac radiation therapy machines are located in their protected shells. These are fixed and cannot be moved.

Fourth – the patient information area must be close to where most patients and their carers will come for their consultations. The opportunity could be taken to integrate the patient education function with this facility so that there is a combined access to the disease-specific technical information and the relaxation and meditation resources which many patients specifically seek.

Fifth – patients must be capable of easily meeting with allied health staff and the cancer care co-ordinators. This is an expanding area within cancer services and the objective should be that eventually all cancer patients will be allocated to a care co-ordinator who can be a point of contact as they travel the cancer journey. At the present time some of those with the more intransigent cancers, such as brain tumours, are lacking access to care coordinators covering their cancer. Social workers should not be hidden away in some broom cupboard out of sight but should be easily reachable by patients. That area of assistance needs to be better resourced.

Sixth – the opportunity needs to be taken to reap the advantages of the E-health revolution. Because of our low population base the oncologists in Canberra need to be “generalists” and they do a fine job but much of the expertise of their more experienced colleagues is found interstate. Telemedicine facilities need to be an integral part of the design so that the Canberra staff can act as agents of disease-specific specialists located elsewhere, even on occasion in another country. Patients and their carers should be able to participate in these consultations.

Seventh – “quiet spaces” need to be built into the design where a patient and their carer can retire to and reflect on any challenging information which might have been given to them in a consultation. On occasion they might want a social worker, care coordinator, or pastoral care worker to be easily available.

Eighth – a small café should be integrated into the design, which is easily accessible by patients and their carers either from the chemotherapy or radiation oncology treatment areas. Some kind of call system spanning waiting rooms, the proposed cafe and the patient information area should be developed so that patients do not feel trapped into remaining fixed in a waiting room fearful that they will miss their “call”. These are mostly ambulatory out-patients. Perhaps they could be issued with location tags which tell the staff the general area where they are waiting.

Ninth – particular care needs to be taken for those patients whose immune system is compromised because of procedures they are undergoing, which might involve specific forms of access and isolation.

Tenth – because pathology results are an integral part of the cancer process and often determine a patient’s ability to receive chemotherapy, blood samples should be taken within the Centre, if at all possible.

The project managers and the architects for the new cancer centre are working to a tight schedule but the last thing anyone wants is a $28 million centre which looks new but has inherent design flaws which add unnecessary stress to the patient and their carers. The diagnosis of cancer and its treatment can be very stressful. Let’s do what we can to reduce stress levels for these people.

Sadly Val Lee died in January 2011. Val was a breast cancer survivor who provided peer support through Bosom Buddies for newly diagnosed breast cancer patients. Val certainly left her mark in the consumer movement and was a source of great comfort to many women when they needed a shoulder.


Denis is a former caregiver and provides peer support to newly diagnosed brain tumour patients and their carers by answering the national Freecall number provided by Brain Tumour Alliance Australia Inc.  He continues to advocate for consumer and carer interest in the development of the Cancer Centre.

Integrated Cancer Centre Consultation

What do you want from the new ACT Integrated Cancer Centre?

Do you have ideas on how the cancer centre can work well for patients?

What sort of space would be comfortable for patients, carers, families and support groups?

Architects are coming up with plans for the new cancer centre to serve the ACT and surrounding regions and consumers are invited to have their input at this design stage.

It is very important we help the Cancer Centre “get it right” from the start and ensure it develops as a truly patient-centered facility.

Come to a meeting to have your views taken into account!

When: Monday, 29 November 2010

12:30pm-2:30pm

Where: HCCA Office

100 Maitland Street

Hackett ACT 2602

RSVP:02 6230 7800