York NHS Research Booklet

RESEARCH BOOKLET York NHS - Mobile Chemotherapy

INSPIRATION For our field research we took took inspiration from a range of services such as attending a blood donation session, going to our local GP and A&E, getting checked out at a sexual health clinic and retrieving a case study from a user’s experience at an abortion clinic.

We have provided an insight into the range of issues and concerns patients have with a potential mobile chemotherapy service. From these insights, we have thought of opportunities for improvement in various areas.

INSIGHT: SOME PATIENTS FEEL ALONE OR ISOLATED During our visit to York hospital, it was apparent that support through the duration of the treatment was very important. Support can make the patient feel more relaxed, reassured and confident about the experience. This is true in other services too. During a first-time visit to the blood donation centre: “I was somewhat apprehensive as I had no experience and noone to accompany me. During my second visit however, I was more confident in what was about to happen.�

OPPORTUNITY: BUDDY SYSTEM Due to the nature of the treatment, with multiple people being treated at once, we thought that a buddy system could be a good way of providing mutual encouragement and reassurance. The system could pair up people new to chemotherapy with someone who is more experienced. Support from experience is a great source of comfort for someone who has no experience.

INSIGHT: PATIENTS FEEL VERY UNWELL FOR A WEEK AFTER The drugs involved in chemotherapy take a great toll on the body, and patients have described feeling very unwell for up to a week after treatment. During this week, patients are able to phone the hospital, however seeing a doctor face to face is much more difficult for those targeted in this project. Having to travel multiple hours to hospital is not an option for many, especially if they are feeling unwell from treatment.

OPPORTUNITY: AFTERCARE SERVICE There is an opportunity here to provide an aftercare service to the patients during the week after treatment. Instead of the patients having to travel to hospital, the chemotherapy bus could bring care to the patient. If we could provide an aftercare service as part of the bus service, maybe 3 or 4 days later, the patients would feel much more reassured in the knowledge that there is support arriving on a regular basis. This service could be extended to cancer patients who do not use the bus for chemotherapy, but still feel like aftercare would benefit them.

INSIGHT: PEOPLE DON’T WANT A ‘CANCER BUS’ TURNING UP AT THEIR HOUSE It was apparent that patients of chemotherapy did not want the fact that they were receiving treatment to be broadcast to the world in the form of a cancer bus. They were not ashamed of the treatment, rather they did not want to be stereotyped/stigmatised/ labelled as cancer patients.

OPPORTUNITY: MAKE THE SERVICE OPEN AND APPROACHABLE The service provided needs to challenge perceptions of cancer and the potential stigmas surrounding it. The bus should be friendly and inviting and create an atmosphere of calm. The bus could possibly also act as an information point to the public, answering any queries the public have.

OPPORTUNITY: SIMPLE BRANDING, PUBLIC LOCATIONS We feel that simple graphics on the outside of the bus would be most fitting for the purpose. We do not want the patients to feel like they’re starring on an episode of Embarrassing Bodies. We want the patient to feel like they are simply turning up for a hospital appointment, for example. The bus could be parked in supermarket parking lots, coach parking areas, near village greens, etc.

INSIGHT: PATIENTS LIKE ROUTINE From our visit to York hospital, we found that the patients enjoy a predictable routine to their chemotherapy treatments.

For example, a patient may like to have their treatment on a Tuesday, as that is when a member of their family is available to support them. This routine means that the patient can plan the rest of their week without worry.

OPPORTUNITY: TIMETABLED SCHEDULE A timetabled bus arriving at the same time and location each week, or 3-week cycle, could provide a level of comfort in the knowledge that the bus is certain to turn up. On the patients’ level, a timetable could provide reassurance that the service is thinking specifically of them.

INSIGHT: PEOPLE DISLIKE BEING A NUMBER During a visit to blood donation and within the case study of abortion, people were called out by a number they were given.

We found that this was a very anti-personal way of going about things and felt that addressing the patient by name was a less sterile approach. Also when talking to a current cancer patient she felt that recieving a letter addressing her directly made her feel alot more reassured in the knowledge that the hospital values her.

OPPORTUNITY: PATIENT PER NURSE To counter this anti-personal approach, a nurse could be assigned per patient to give one to one support. This support could make the patient feel more valued. Patients should be treated like people, not problems. We feel that bringing the service up to a personal level would make the experience less daunting and provide a regular face to confide in. We found this to be an important aspect in a current patient’s routine.

INSIGHT: FIRST TIME PATIENTS ARE NERVOUS When doing anything for the first time, we naturally become nervous. This is especially true when receiving chemotherapy for the first time. Due to the seriousness of the disease, time is of the essence and proceedings often feel rushed to the patient. This rushed feeling adds to the anxiety of the whole situation and even though the patient is shown a DVD explaining chemotherapy, they sometimes feel left in the dark about some of the details.

OPPORTUNITY: BUS BRIEFING SESSION PRIOR TO TREATMENT We feel that a briefing session, detailing all aspects of treatment on a mobile unit would be very beneficial to the patient, prior to first treatment. This could include how the bus travels to the locations (route, timings etc.), what is involved in treatment, how it is different to hospital (if at all) and other FAQs. “Any fool can know. The point is to understand.”

- Albert Einstein

INSIGHT: MOOD OF STAFF HEAVILY INFLUENCES MOOD OF PATIENTS During a visit to A&E, we found that if a nurse was friendly, it made noticeable difference to the mood of patients around them. This could be said for the surrounding environment too.

We found that the NHS, whilst being clean and efficient, looked a little cold and lifeless. This may affect patients, contributing towards a negative experience rather than a positive one.

OPPORTUNITY: PROVIDE A COMFORTABLE AND FRIENDLY ENVIRONMENT To counter this feeling of negativity, we feel that the bus should be as warm and inviting as the equipment will allow. If the patient can feel like they are reclining in their armchair at home with a newspaper and hot drink, they will see the experience less as a chore and more as part of their normal routine.

INSIGHT: PATIENTS GET BORED DURING LENGTHY TREATMENT During a visit to A&E, it was found that boredom was an issue.

In the hospital, there was no phone signal and a small selection of magazines. Chemotherapy treatments can take up to 4 hours, during which time there is not a lot to do. A patient told us that she brought in her own iPad to watch tv shows on to alleviate boredom, however not everyone has access to such technology.

OPPORTUNITY: IN BUS ENTERTAINMENT/ ACTIVITIES To solve this problem of boredom, a range of distractions could be provided. For example, a WiFi hotspot could be set up to allow users of technology to connect to the internet. This could be a problem however as mobile internet signal is often very poor in rural locations. Satellite connection may be the answer. The bus could also provide iPads to the patients with pre-loaded films, music or games. Up to date newspapers, magazines, radio and other sources of entertainment could be included.

INSIGHT: PATIENTS MAY FEEL UNEASY ABOUT A NEW SERVICE As is often the case, resistance to change is regularly a challenging factor. Hospital is associated with safety, professionalism and cleanliness, so taking away the hospital and replacing it with a bus may make patients reluctant to trust the mobile service.

OPPORTUNITY: HAVE GROUP MEETINGS Group meetings about a bus-type mobile service would allow people to speak up and raise any concerns they have. In a group, people may feel more relaxed in the knowledge that other people share their concerns. If the meeting can reassure the patients about the validity of the service, patients will hopefully be more confident about adopting the service as a hospital replacement.