Tuesday, March 1, 2011

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.

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