The NHS has recently celebrated its 75th birthday and, since its birth, the health needs of the population it serves have continuously increased in complexity (Barnett et al, 2012). This is due to an ageing and growing population, increasing demand for care, greater patient expectations, higher healthcare costs and evolving complex healthcare requirements (Hooks and Walker, 2020). To meet patients' needs, over the past few years and following an investigation in 2008 that highlighted an urgent need to improve the quality, safety, and efficiency of care for cancer patients (National Confidential Enquiry into Patient Outcome and Death (NCEPOD) (Mort et al, 2008), the NHS has seen the establishment of new services. One such service is that of cancer hotlines, which play a pivotal role in identifying patients who call through to report treatment-related complications (Mort et al, 2008) and provide timely and safe care through effective triage, assessment, and advice.
In 2016, in response to growing demand for help and advice from patients undergoing cancer treatment and due to increased pressures on the clinical nurse specialist (CNS) workforce at a tertiary cancer centre, a 24-hour patient hotline was created. Since then, the service has seen a growing demand year on year, with an increasing number of incoming calls, as well as more complex patient queries secondary to developments in cancer treatment modalities available to patients.
The hotline number is given to all tertiary cancer centre patients, along with the information to call for help, advice or with any questions they might have. Calls coming through the hotline vary in nature, from queries about appointment times, medication questions, advice following appointments, to patients reporting feeling unwell, for example with pyrexia. The hotline currently operates 24 hours a day, 7 days a week, and is run exclusively by nurses. The hotline offers personalised cancer care, advice, and signposting across professional and organisational boundaries, to improve patient care and cancer services.
Historically, the service did not have a formal platform through which to receive feedback from patients or carers who have used the hotline. However, staff were aware from anecdotal informal feedback that there were some negative aspects of the service provided, such as call waiting times, and patients sometimes disagreed with the clinical advice given. Therefore, a patient survey consisting of eight questions was created to gather key information and offer the opportunity for the participants to provide their opinions in free text.
Aim
The present study aimed to evaluate oncology patients' experience with a hotline service in a tertiary cancer centre, identifying areas for local improvement and to inform the work of the hotline.
Method
The survey comprised eight questions (Table 1), offered in English language only, with the aim to:
- Identify any issues from callers using the hotline
- Identify for what reasons patients/carers use the hotline
- Understand if patients were satisfied with the service.
Table 1. Survey questions
| Question 1 | What was your reason for calling the hotline? |
| Question 2 | How long did you wait to speak to one of our hotline nurses? |
| Question 3 | Were you satisfied with the length of time you waited to speak to one of our hotline nurses? |
| Question 4 | Did you feel like the hotline nurse listened to you and offered support? |
| Question 5 | After your call to the hotline, did you understand what the next steps were? |
| Question 6 | Was your reason for calling the hotline adequately addressed? |
| Question 7 | If the hotline did not exist, who would you have called? |
| Question 8 | We would like you to think about your recent experience of calling the hotline. Overall, how was your experience of our service? |
At the beginning of each week, the service administrator gathered, from the hotline IT software program, the mobile numbers from each call made to the hotline in the previous 7 days. This took place between 26 December 2022 and 15 March 2023. Through bulk messaging, the callers were then sent a text message asking them to click on a link that would direct them to an online platform to take part in the survey. Only one survey invitation text message was sent to mobile numbers that called the hotline more than once. Those who had questions or required support in completing the survey were provided with a telephone number to reach a member of staff. Once completed, the online platform would save and consolidate the survey results. No patient-identifiable data were collected, and participants had 7 days to complete the survey.
Inclusion/exclusion criteria
Only calls made to the hotline from UK mobile numbers were sent the online link to the survey, meaning that calls from landlines or international numbers were excluded.
The hotline service is only available to patients under the care of an adult tumour-specific team (aged 16 years or over), although a similar service, but separate from the hotline, is available at the named tertiary cancer centre for paediatric patients. Therefore, it is assumed that only adult callers were sent the invitation to participate in the survey.
Results
Out of 3028 survey invitations sent, 368 people fully completed the survey, yielding a response rate of 12%. Demographic data collected showed that 89% (n=328) of the participants were patients at the tertiary cancer centre, while 11% (n=40), were family members or carers of patients under the care of the tertiary cancer centre and had called the hotline on their behalf. Some 38% of participants were male and 62% were female (n=138 and n=229, respectively). The majority of participants were aged 50 to 85 years (85%) (Table 2) and from a White ethnic background (84%) (Table 3).
Table 2. Participants age group
| Age group | 16–25 | 26–49 | 50–65 | 66–85 | 85+ |
|---|---|---|---|---|---|
| % | 2 | 12 | 44 | 41 | 1 |
| n | 6 | 46 | 163 | 150 | 3 |
Table 3. Participants' ethnic group
| Ethnic group | White | Mixed/multiple ethnic groups | Asian/Asian British | Black African/Caribbean, Black British | Chinese | Other ethnic group | Prefer not to say |
|---|---|---|---|---|---|---|---|
| % | 84 | 2 | 6 | 4 | 1 | 2 | 1 |
| n | 310 | 6 | 22 | 15 | 5 | 6 | 4 |
In the answers to question 1, 30% (n=110) of participants selected the reason for their call to be related to chemotherapy or immunotherapy, and 15% (n=55) selected the reason to be related to surgery. Nineteen per cent (n=69) of participants sought general advice, whereas 27% (n=99) of participants called the hotline because they were feeling unwell (Figure 1).
Participants who selected ‘other’ as the reason for calling the hotline were asked to give more details in free text. Some of the answers provided included chasing multidisciplinary team meeting outcome, the patient having had a fall, advice on laxatives, and difficulties with a nasogastric tube or peripherally inserted central catheter (PICC) line.
In the answers to question 2, 49% (n=180) of participants responded that their calls were answered within 10 minutes, whereas 18% (n=66) waited 30 minutes or more (Table 4).
Table 4. Waiting time to speak with a hotline nurse
| Question 2: How long did you wait to speak to one of our hotline nurses? | Less than 10 minutes | 10–20 minutes | 20–30 minutes | 30–40 minutes | 40–50 minutes | More than 50 minutes |
| 49% n=182 | 24% n=90 | 9% n=32 | 7% n=26 | 4% n=13 | 7% n=25 |
In question 3, 82% (n=302) of callers were satisfied with the length of time they waited to speak with a hotline nurse, whereas 18% (n=66) were not. The latter participants were asked to give more details in free text. Some of the answers provided included long waiting times, multiple phone calls required to get through to a hotline nurse, the phone call being cut off and needing urgent advice.
In questions 4, 5 and 6 respectively, 97% (n=357) of participants felt the hotline nurse listened to them and offered support, 96% (n=353) understood what the next steps were, after their call to the hotline, and 91% (n=335) felt that their reason for calling was adequately addressed (Table 5).
Table 5. Responses to questions 4, 5 and 6
| Yes | No | Unsure | |
|---|---|---|---|
| Question 4: Did you feel like the hotline nurse listened to you and offered support? | 97% n=357 | 1% n=3 | 2% n=8 |
| Question 5: After your call to the hotline, did you understand what the next steps were? | 97% n=355 | 1% n=5 | 2% n=8 |
| Question 6: Was your reason for calling the hotline adequately addressed? | 91% n=335 | 5% n=18 | 4% n=15 |
In question 7, 45% (n=167) answered that, if the hotline did not exist, they would have called their CNS or support worker, 20% (n=75) would have called the NHS 111 line, 15% (n=56) their GP, 10% (n=35) would have called 999 and 10% (n=35) would have called someone else (Figure 2). Regarding the latter option, the free text comments included calling the local hospice, district nursing team or friends.
Lastly in question 8, 71% (n=261) and 22% (n=81) reported their overall experience with the hotline service was very good or good, respectively, whereas 5% (n=18) reported neither good or poor and 2% (n=8) reported a poor experience (Table 6).
Table 6. Responses to question 8: overall experience
| Question 8: We would like you to think about your recent experience of calling hotline. Overall, how was your experience of our service? | Very good | Good | Neither good or poor | Poor | Very poor |
| 71% n=261 | 22% n=81 | 5% n=18 | 2% n=8 | 0% |
Most of the negative comments provided in the free-text section, referred to long waiting times and needing urgent advice.
Discussion
Hotlines within cancer care are an important and needed addition to the NHS, not merely from a financial point of view but also for the exceptional value a hotline adds to the patient experience and outcomes. The NHS benefits from having such services in place, in that the nursing contribution to care and patient experience is optimised. The NHS is facing challenges all over the country, namely, limited bed capacity, increased numbers of unwell patients, critical shortages of staff and resources and, more recently, increased pressures since the COVID-19 pandemic (Kutikov et al, 2020; Propper et al, 2020; Sud et al, 2020). In view of this, the survey results have shown that having a dedicated hotline to support oncology patients before, during and after their cancer treatments, diverts patients' calls from GPs (15%) and from public services such as 111 and 999 (30%), subsequently reducing their workload.
At present, there are no national standards in terms of key performance indicators (KPIs) that would help measure the success of the hotline service, and so evaluating the results acquired via the survey with any official endorsement is not feasible. Regardless, in view of the 12% response rate and that the study design may have excluded a large number of people who do not speak English or who called from landlines or international numbers, the authors acknowledge that this study may not be truly representative. However, patient views and feedback were considered to reach significant conclusions.
Although it is reassuring to find that 71% of participants found their overall experience with the hotline very good and that 82% were satisfied with the length of time they waited to speak with a hotline nurse, it was discouraging to realise that 18% of participants waited 30 minutes or more to have their calls answered. This is particularly important knowing that cancer hotlines were originally created to provide time-sensitive advice and to signpost patients to the safest place of care (Mort et al, 2008).
Furthermore, the survey has demonstrated that the nursing care accessible via the hotline is contributing to an enhanced patient experience and is meeting patients' expectations, as the majority of participants felt listened to and were offered support (97%), felt that their reason for calling was adequately addressed (91%), and understood what the next steps were (96%). However, the survey responses have highlighted some key points:
- The hotline is used for several purposes and not just for patients who are unwell
- Call waiting times can be long
- Service users have requested a call-back option.
As a result, the hotline service is currently taking the following actions:
- Applying for further funding to increase the number of nurses
- Reviewing and adapting the current telephone call system to include more options and a ring-back feature
- Reviewing the scope of the hotline service.
Conclusion
The present study offers persuasive evidence indicating that oncology patients under the care of the tertiary cancer centre, or their family members or carers who use the hotline, are largely satisfied with the service. Nonetheless, it is recognised that, as this study was the first of its kind in its own setting, more research featuring a more robust evaluation is needed. Regardless, the need for certain improvements has been identified, with the aim for the delivery of an effective and efficient service through improved patient care and experience. More people are being diagnosed with cancer and so there is a need to ensure clinical support is available instantly and out of hours to prevent other services being overwhelmed. The hotline service offers the potential to enhance patients' experience, minimise difficulties, and keep patient in the comfort of their homes whenever it is possible and clinically safe to do so.
KEY POINTS
- The hotline service is positively supporting cancer patients − 97% of participants felt listened to and were offered support and 91% felt that their reason for calling was adequately addressed
- Participants highlighted timeliness as a key strength, with 82% noting being satisfied with the length of time they waited to speak with a nurse
- Despite overall positive feedback, 18% of respondents reported waiting 30 minutes or more to speak with a nurse, signalling a potential area for improvement in service delivery
- The survey findings emphasise the critical role of hotline services in complementing traditional healthcare delivery and reducing the demand on other services such as GPs, emergency departments or the 111 service, offering personalised support tailored to the needs of cancer patients
CPD reflective questions
- Reflect on your own experiences or observations regarding cancer patient support services. How do they align with the findings of this article?
- Consider the challenges faced by cancer patients in accessing support services. How can these challenges be addressed effectively?
- How can you apply the lessons learned from this article to enhance the overall quality of care provided to cancer patients in your professional setting?