The majority of Waitemata DHB cancer patients will receive their radiotherapy and chemotherapy treatments at the Auckland DHB Regional Oncology/Radiotherapy Service.
Some surgeries or procedures are completed by specialty surgeons/clinicians at Auckland City Hospital and on occasion Middlemore Hospital. These specialties provide services for the Auckland Region on behalf of all of the DHBs.
What are we trying to achieve?
We wanted to gain insight and better understanding of the experience and cancer journey of our patients and family/whānau to help inform the design and delivery of cancer services at Waitemata DHB in the future. We decided to run co-design workshops to do this.
Co-design is an important part of the process to:
- engage people - consumers, family and staff
- capture people's experiences and ideas
- organise the learning that it brings to create new understanding and insight from the perspective of the care journey and emotional journey
- come together in partnership to review learning and ideas
- plan and implement improvements
- review what difference this has made
What have we done?
In October 2016 our Patient Experience team facilitated five co-design cancer workshops. Workshop participants were divided into cultural groups to determine whether there were any distinct culture differences and to provide a comfortable environment for participants to share their stories. Asian services, Pacific services and Maori services supported the recruitment of participants and the delivery of all workshops.
Workshop Process
Participants were divided into groups, often language groups, and were facilitated through a 'typical' cancer patient journey with the following touch points/stages:
- first concerns
- orientation to service
- referral
- assessment
- diagnosis
- treatment
- review/follow up
- discharge
Participants were asked for each stage of their journey to express how they felt, the challenges they faced, to provide examples of effective service, and what was important to them. Participants were also asked if there were any stages missing in the journey and what improvements could be made to enhance their experience.
Cancer Care Co-Design workshop outputs
The second part of the workshop focused on service delivery and future cancer services. Participants were asked:
- what was most important to them in a new cancer service
- what it should look like
- what should it be called
- how services should be delivered
After each part of the workshop patients and families were invited to share what their groups had discussed. Our facilitators checked in to ensure they had interpreted stories correctly.
We also held a listening workshop for families of cancer patients, where participants were able to share their stories in a more informal setting and our the facilitators just listened and wrote notes.
What did we find?
We reviewed feedback from participants from all of the co-design workshops and have grouped them into common themes.
Overall Themes
1. Access & Transport
Parking Costs
- Parking is very expensive especially when making frequent trips and the patient no longer has a regular source of income because of the cancer.
- The cost of parking puts significant strain on the family. On some occasions it has prevented family members from visiting sick relatives.
"Car parking and cost is very expensive. Hospital should provide free parking for cancer patients."
Transport
- Travel to and from Auckland City Hospital is difficult due to traffic, inflexible treatment times and distance travelled. This increases stress levels and puts added pressure on the patient.
2. Communication
Disconnect Between DHBs
- Communication doesn’t flow between DHBs and files are not shared. This means that patients have to repeat their story and diagnosis over and over again.
- Patients are unclear about the process and why some procedures can be carried out locally and others they have to travel to Auckland Hospital
"Waitemata DHB did all of the assessments and recommended a surgeon at Auckland DHB."
Understanding Medical Terminology
- Some patients had difficulty understanding medical terminology and the use of big words. Technical jargon means little to the patient.
"Even as a nurse I couldn’t understand some of the terminology because I was in shock."
Staff
- There have been varying levels of support and interaction from staff. Some showed kindness and compassion. All were welcomed and helped which enhanced the experience
- Service staff (Cleaners and Orderlies) were also recognised for their role in making their time at the hospital a good one
"Appreciate staff who understand, empathise, warm hearted, patient centred, friendly."
Processes
- Whilst the referral process was at times slow for some patients, most were grateful to receive diagnosis relatively quickly once assessments and tests were underway
- Once cancer was diagnosed, the speed of the process was fast. Treatment was great and the staff were friendly and kind
"Oncology Doctor gave us detailed information and arranged the operation within reasonable time frame."
3. Support
Cancer Society
- The Cancer Society plays an important role for patients by providing continuous support. They visit patients and call to see how they are doing. They also provide transport to/from treatment if patients need it
- A journey pack containing important information was issued to all patients, and many patients and family acknowledged that the pack contained important information and was very helpful
Support Outside Whānau
- Patients would like support from other people who have been in the same situation. This would be useful for the whānau as well as the patient
Support Between Treatments
- Professional support between treatments was limited. Although patients had the support of family and friends, they found there were times when they would have appreciated contacting a professional and have a chat about their concerns
- Some families experienced a feeling of not feeling wanted and were frustrated when they were sent from one service to another only to end up back in the same place they originally started
GP Support
- The journey often starts and ends with the local GP. They are integral to a patient’s journey and the levels of support have varied. Some have exceeded expectations by providing support between treatments, delivering results and being prompt with referrals. Others have found it difficult to get appointments, costly and found GP’s incapable of offering specialist advice or treatment when needed
4. Suggestions from Workshop Particpants
- Provide a map of what the journey looks like for a cancer patient. For example, a flow chart with diagrams and an explanation of what to expect at each stage
- Discharge booklets which have information on what to expect after discharge, diet and nutrition and who to contact for help and support
- Send text reminders to patients for appointments and to advise if an appointment has been cancelled
- Provide suggestions of organisations or groups that can help outside the hospital, ie Cancer Society, Facebook support pages, financial assistance etc.
- 0800 Cancer helpline which provides after hours support
- Online appointment booking facility
- Once a month hold a party for patients to celebrate milestones and share their experiences with other patients
- Extend hours of treatment
5. Future Cancer Service Recommendations
- Spiritual Centre
A centre which caters to Auckland’s many cultures and provides a place to pray, seek spiritual peace and form friendships.
- Homely and welcoming environment
There should be a place where patients can relax and feel comfortable. It needs to have some personality and be inviting and spacious, with an uplifting feel. This can be achieved through the use of colour, using photos or art, natural light and views, warm lighting and smell pleasant.
- Multilingual Staff
Someone to help, support and explain what is happening without the patient and the family feeling intimidated to ask. Information can be interpreted and delivered in a way that is culturally sensitive.
- One Stop Shop (all services in one centre)
Patients are looking for a centre which provides all services in one place. The services can range from screening, MRI and CT scans, blood tests, x-rays, ultrasounds, radiotherapy and chemotherapy. Coordinated service delivery means patients get a better service within our complex health care system.
- Chemotherapy Services
Comfortable chairs are important, particularly as most patients are there for up to five hours getting treatment. Options of private cubicles (ie like a first class airline seat) and an open plan area are both appealing and cater to individual needs. Having options to pass time are also important. These can include television entertainment units (ie similar to an airplane), iPads, books, free Wi-Fi, jigsaws and magazines.
- Chemo Bus
The idea of a ‘Chemo Bus’ travelling to locations close to the patient is extremely appealing.
- Appointment Times
Where possible, provide flexibility around appointment times. An online booking system allows patients to pick times suitable for them. This will also help patients who depend on others to bring them to appointments and treatment, and it will simplify the process should a patient need to change an appointment.
- Extended Hours of Service
Extended treatment hours enhance the patient experience as they can arrange treatment around traffic and family and friends availability.
- Family room
A family friendly room for visitors to wait and have ‘time-out’. The room should cater to their needs with snacks, tea and coffee, Wi-Fi, videos, magazines/newspapers, microwaves, and mobile device charging facilities.
- FoodAvailability of snacks and hot drinks for patients and their guests. Retail outlets should provide reasonably priced food and include Asian food options.
- Accommodation
There are times when the patient needs or wants a family member to stay and provide support. Having family stay should be acceptable and accommodated, and assessed on a case by case basis. For families who travel from far, provisions to stay the night would be helpful.
- Outdoor area
A quiet landscaped area for patients to sit, relax and recover.
- Wayfinding
Provide clear wayfinding and signage to make it easier for the patient to navigate their way across the hospital. Colour is good way to assist with this i.e. using coloured paths or easy identifiable coloured signs.
- Location
The location of the centre is important. There is a preference for the centre to be located within or near the hospital in the event of an emergency. Ideally, patients would like a centre close to their home, ie North Shore and Waitakere.
- Parking
Parking should be free and there should be plenty of it. If parking can’t be provided underneath the building, then a covered walkway is essential.
- Information Space
An area which provides patients with information they require. The area can include touch screens with videos or information, leaflets, help desks for organisations such as the Cancer Society, with drop in sessions so patients and family know when to visit.
- Nice to Have
Massage chairs during chemo, hair salon, yoga, rehab facilities, and table tennis and a selection of games in the family room.
Did we make a difference?
Overall a high level of service is currently being delivered with some stating that the service was as good as private care and treatment. Doctors, nurses and hospital staff are performing well and patients are grateful for their kindness and support during this difficult time.
Areas for improvement include better communication and more depth to the information provided. Some cultural differences are evident, ranging from the extent of whānau support and involvement, to support from people they can relate to within their community, and extended professional support services.
Patients would like a seamless experience and coordinated delivery. Of particular importance is timely service, having good treatment options, good relationships with staff and the care team, to be treated like an individual who is important, and above all a welcoming, friendly and caring environment.
The number one priority for all patients is to get great care and support, and be well again.
Where to from here?
Based on the findings from our co-design workshops and further consumer involvement a Herceptin[1] Service has recently opened at North Shore Hospital. This enables patients who live in the Waitemata DHB catchment to receive treatment closer to home, rather than travelling to Auckland City Hospital.
As cancer services are developed and planned for in the future, further consultation and co-design workshops will be conducted to design services to meet the needs of our diverse community. The valuable findings from these workshops have been shared across the region to influence change in practice.
References
- Herceptin is a drug therapy given to women with HER2 Positive breast cancer.