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• To read about the current provision of cancer-related pain services in the UK
• To recognise that people with cancer-related pain may be experiencing issues in accessing support services
• To acknowledge the need for all healthcare professionals to receive adequate education on cancer-related pain
Background Cancer-related pain is the most commonly reported symptom across all cancer types. It can have significant effects on the person experiencing it, including reduced quality of life. Cancer-related pain is complex and requires specialist support from the multidisciplinary team to ensure optimal management.
Aim To map the current provision of cancer-related pain services across the UK and understand the support available within them.
Method An online survey was developed by a team of specialists with expertise in cancer-related pain. The survey was circulated via a social media platform to recruit healthcare professionals working for cancer-related pain services.
Findings A total of 63 respondents from across England completed the survey, with no responses received from the other UK nations. The types of services that provided support for people with cancer-related pain included oncology services, pain services and late effects services; 56% (n=35) of services were multiprofessional. There appeared to be some issues with accessing these services, as 37% (n=23) did not accept referrals for those with late effects cancer pain and 21% (n=13) did not accept referrals for those undergoing palliative treatment. All respondents agreed that additional education and support is needed regarding cancer-related pain.
Conclusion The results of this survey indicate that the provision of cancer-related pain services is inconsistent. Further work is necessary to improve access to these services and to ensure that healthcare professionals receive adequate education on cancer-related pain.
Cancer Nursing Practice. doi: 10.7748/cnp.2023.e1853Peer review
This article has been subject to external double-blind peer review and checked for plagiarism using automated software
Galligan M, Tanay M, Armoogum J et al (2023) Exploring the provision of services to support people with cancer-related pain. Cancer Nursing Practice. doi: 10.7748/cnp.2023.e1853
Published online: 19 December 2023
Cancer-related pain is the most commonly reported symptom across all cancer types (Bubis et al 2018). The exact incidence of cancer-related pain is challenging to determine, as it will vary depending on the primary diagnosis. However, it is estimated that 55% of patients will report cancer-related pain during treatment, increasing to 66% in those with advanced disease, and with 34-47% reporting persistent pain as a late effect of cancer and/or its treatment (van den Beuken-Van Everdingen et al 2007, Jiang et al 2019, Fitch et al 2021, Haenen et al 2022). Therefore, the incidence of cancer-related pain continues to be significant throughout all stages of cancer treatment.
Cancer-related pain affects the individual and those around them (Tanay and Armes 2019, Armoogum et al 2020) and is associated with a higher risk of feeling depressed, worried, nervous or anxious, alongside low quality of life (Bamonti et al 2018, Cramer et al 2018, Poço Gonçalves et al 2021). However, although it is increasingly recognised that people living with and beyond cancer have unmet needs regarding pain (Sodergren et al 2019, Dupoiron et al 2022), they can experience challenges when attempting to access and receive support (Armoogum et al 2020, Fitch et al 2021). Managing cancer-related pain can be challenging because it is complex, multifactorial and multidimensional and requires specialist input (Galligan 2022). Multidisciplinary team (MDT) working is essential for chronic pain rehabilitation in cancer (De Groef et al 2019), but little is known about the provision of services to support those with cancer-related pain in the UK.
A group of healthcare professionals with clinical and research experience in cancer-related pain formed a special interest group to explore and understand the needs of people with cancer-related pain and the services available to support them. Following discussion, the group identified as its priorities mapping the current provision of cancer-related pain services across the UK and understanding the support available in those services.
To map the current provision of cancer-related pain services across the UK and understand the support available within them.
The special interest group developed an online survey consisting of 23 questions (Box 1). These included demographic questions and questions exploring the type of services provided. Some questions were rated using a five-point Likert scale. Respondents were also provided with free-text boxes to share comments regarding the provision of cancer-related pain services.
• What kind of service do you currently work in?
• Where is your service based?
• What health disciplines make up your service?
• Are those working within your service full time?
• How much time is spent focused on cancer-related pain?
• Do you accept referrals for those undergoing active treatment?
• Do you accept referrals locally or nationally?
• Do you accept referrals for those undergoing palliative treatment or those already being seen by palliative and supportive care services?
• Does your service accept referrals for those who primarily present with post-treatment cancer late effects pain?
• What are the common reasons for referral into your service?
• How often are you seeing referrals for adults presenting with late effects pain as a direct result of cancer treatment?
• What types of cancer-related late effects pain are commonly being referred to your service?
• Are those presenting with cancer-related pain offered a multidisciplinary pain assessment?
• What types of management strategies does your service offer those impacted by cancer-related pain? (tick which apply to your service: investigation into cause of pain; pain medication recommendations; invasive pain interventional procedures; pain management programme; signposting; supported self-management; functional rehabilitation; other)
• What interventional pain procedures do you offer?
• When noticing a functional deficit associated with cancer-related pain, how likely are you to refer to rehabilitation services?
• Why are you unlikely to refer to rehabilitation services?
• Which other services are you most likely to signpost those living with cancer-related pain to?
• How satisfied are you with local provision of cancer-related pain services?
• If neutral or dissatisfied, why so?
• Any broader comments or additional details you might wish to share about provision for those presenting with cancer-related pain:
• Would you be happy for us to contact you further about this issue? (please provide contact details)
• Would you be willing to share a copy of your service referral criteria?
Three members of the specialist interest group (MG, JA, JC) developed the initial draft of the survey, with the remaining three members (MT, RC, SC) reviewing the content to ensure readability and feasibility. Following this review, minor changes were made to the content and grammar of the survey questions.
The survey was promoted and distributed via social media with support from national organisations throughout the UK to recruit healthcare professionals working for cancer-related pain services. The social media recruitment post was shared via the Pain Nurse Network, the British Pain Society and the UK Oncology Nursing Society Twitter accounts. It was then reshared by other national organisations such as the Royal College of Nursing’s Pain and Palliative Care Forum. Data collection took place between April and June 2022, with regular reminders posted on Twitter every four weeks to improve reach and response rate.
Descriptive data analysis was used to identify trends and map the current provision and location of cancer-related pain services in the UK. All responses were anonymised and entered into a spreadsheet. They were then analysed to provide demographic data and to compare the services available within this sample. The principles of thematic analysis (Braun and Clarke 2006) were used to review responses to the free-text questions; this was completed by one researcher (MT) with experience in thematic analysis.
Across the three-month data collection period, the original post on Twitter by the Pain Nurse Network account received 15 retweets and 21 likes. A review of the post’s analytics found that the tweet reached 3,430 users. It was not possible to gain the analytics data from the posts shared by the other organisations. This engagement resulted in 63 respondents completing the survey.
Demographic information was collected to map the current cancer-related pain service provision across the UK. There were no survey responses from Scotland, Wales or Northern Ireland, so the availability of pain services in these nations cannot be reported. The survey respondents worked in services spread across north east England (11%, n=7), north west England (35%, n=22), Yorkshire (11%, n=7), West Midlands (3%, n=2), London and south east England (10%, n=6), south west England (29%, n=18) and east England (2%, n=1).
• Further research is required to understand the current provision of cancer-related pain services across the UK
• A directory should be developed that details the services available in each region and identifies the referral pathways into these services; this directory should be accessible to healthcare professionals and patients
• All healthcare professionals should have the knowledge, skills and confidence to recognise and assess the effects of cancer-related pain on the individual and those around them
• There needs to be an emphasis on supporting all healthcare professionals in the assessment and management of cancer-related pain
The types of services that supported people with cancer-related pain included oncology (41%, n=26), pain (11%, n=7), late effects (5%, n=3), haematology (2%, n=1) and other (41%, n=26) (Figure 1). Other services included palliative and supportive care (n=10), lung cancer (n=3), upper gastrointestinal/colorectal (n=2) breast care (n=2), rehabilitation (n=2), surgical care (n=1), hospice (n=1), physiotherapy (n=1), urology (n=1), oncology and haematology (n=1), independent (n=1) and neurological rehabilitation (n=1).
Many survey respondents indicated highly specific eligibility criteria to access their services. This was evident in their responses to the question ‘Do you accept referrals for those undergoing palliative treatment or those already being seen by palliative and supportive care services?’, to which 21% (n=13) answered no, and the question ‘Does your service accept referrals for those who primarily present with post treatment cancer late effects pain?’, to which 37% (n=23) answered no.
Across the services that responded, there was a mix of professional groups involved in delivering support (Figure 2). Around 56% (n=34) of services were multiprofessional.
Figure 3 shows the types of cancer-related late effects pain for which patients are commonly referred to services. Most services listed multiple causes of pain commonly seen in patients who attended their service. There was a high incidence of neuropathic pain states reported as either general neuropathic pain or chemotherapy-induced peripheral neuropathy (n=32). Musculoskeletal and bone pain (n=26) was the second most common presentation seen, followed by post-radiotherapy induced pain (n=20).
Survey respondents were asked whether a multidisciplinary pain assessment was offered to patients referred into the service. Around 48% (n=30) reported that a multidisciplinary pain assessment was offered following referral into their service, with 44% (n=28) reporting that a multidisciplinary pain assessment was not offered. The remaining 8% (n=5) were unsure if a multidisciplinary pain assessment was being offered.
A total of 25 (40%) of respondents were somewhat satisfied with their local provision of cancer services (Figure 4). Those who expressed dissatisfaction provided reasons such as limited access, long waiting lists, low service capacity or the lack of a pain service, a generalist approach to pain management, lack of understanding of pain and available pain services among healthcare professionals and lack of integrated care.
Themes from respondents’ free-text comments were collated and are shown in Table 1.
|Examples of effective practice
|Areas for improvement
|Comments related to patient and carer experience
|Important health disciplines for cancer pain specialist services
The effects of cancer-related pain are significant and wide-reaching for patients, families and healthcare services (LeBaron et al 2014, Tanay and Armes 2019, Armoogum et al 2020). However, despite this, cancer-related pain remains underestimated and undertreated by healthcare professionals (Faculty of Pain Medicine of the Royal College of Anaesthetists et al 2019, Nijs et al 2023).
There has been a drive to improve the support offered to those with cancer-related pain. For example, the Framework for Provision of Pain Services for Adults Across the UK with Cancer or Life-Limiting Disease (Faculty of Pain Medicine of the Royal College of Anaesthetists et al 2019) was developed to provide operational guidance for improving pain services for people with cancer. This framework recommended an integrated approach between pain and cancer services and encouraged a greater emphasis on MDT working between specialist pain services, oncology services, supportive and palliative care services. This reflects the recommendations in the standards for the management of cancer-related pain developed by the European Pain Federation (Bennett et al 2019a).
The findings from this survey suggest there may be areas of the UK which do not have adequate access to specialist cancer-related pain services, despite the recommendations from national and pan-European guidelines (Bennett et al 2019a, Faculty of Pain Medicine of the Royal College of Anaesthetists et al 2019). However, it is important to note that the recruitment via social media platforms could have restricted some services from taking part in this survey. Nonetheless, this survey provides some insight into current service provision.
Further examples of variations in the provision of cancer-related pain services were seen in the respondents’ free-text comments. One respondent stated that there was ‘no equitable access to pain services across the UK and access to specialist services is difficult.’ Some respondents stated that they were using the services of palliative care teams and the local hospice for support with cancer pain management. While this can be considered a positive step towards MDT working, it may not always be an appropriate option for patients with persistent late effects pain following completion of curative cancer treatment.
Respondents also shared concerns regarding the high demand on services, with one stating that ‘most pain clinics cannot cope with the volume of cancer-related work’. As the incidence of cancer increases, so will the incidence of those with cancer-related pain as a direct result of cancer and/or its treatment. This growing population will require additional capacity in existing services to ensure they can access specialist support. In 2022 there were an estimated 3 million people with cancer in the UK and it is anticipated that this will increase to 5.3 million by 2040 (Macmillan Cancer Support 2022). This increase in cancer prevalence, combined with the rise in ten-year survival rates, is creating a growing population that will be living longer with the consequences of cancer treatment and will require support from specialist services (Cancer Research UK 2023). Further research is necessary to explore the effect of this growing population on service demand and the role of integrated working between specialist pain and cancer services.
Despite the survey being disseminated to pain nursing and late effects networks, only a small number of respondents from these clinical areas replied. Most respondents worked in oncology, hospices and palliative care, which could suggest that most cancer-related pain is managed predominantly by these services. It is not possible to draw firm conclusions regarding the role of specialist pain services based on this survey, due to the limited responses. However, the findings reflect earlier work by the Faculty of Pain Medicine of the Royal College of Anaesthetists et al (2019), which found that referrals for cancer-related pain to specialist pain services were inadequate and additional work was needed to integrate these services within palliative care and oncology services.
Accessing support regarding cancer-related pain can be challenging for people, depending on the type of pain they are experiencing and their cancer diagnosis. Cancer-related pain is complex and can be a combination of acute, persistent and breakthrough pain states at any given time (Galligan 2022). This means that there may be individuals with advanced disease experiencing persistent pain because of cancer and/or its treatment, alongside those who have completed curative treatment but are experiencing persistent pain. Armoogum et al (2020) captured this in their study exploring the experience of people with persistent late effects pain, reporting that this cohort often struggle to find appropriate services that can meet their needs.
Some indications of issues with accessing services were identified in this survey, with 21% (n=13) of respondents not accepting referrals from those undergoing palliative treatment; that is, those not on a curative treatment pathway. In addition, patients who have completed curative treatment appear to experience similar challenges in accessing support, with 37% (n=23) of services reporting they would not accept referrals for those with persistent pain due to cancer treatment.
Further exploration is necessary to understand how patients are accessing specialist services to manage pain across the range of cancer treatments. This would enhance understanding of the barriers to accessing services across all types of cancer-related pain.
Due to the complexity of cancer-related pain and its range of effects on people’s lives, it is essential that an MDT approach to pain assessment and management is offered to ensure that patients receive optimal care (Bennett et al 2019a, 2019b, Faculty of Pain Medicine of the Royal College of Anaesthetists 2021). However, the results of this survey suggest that many services are not able to offer an MDT approach, with 44% (n=28) not offering a multidisciplinary pain assessment.
Most services (79%, n=50) reported that they would refer patients to local rehabilitation teams if they observed a functional deficit associated with cancer-related pain. However, 21% (n=13) said they were unlikely or neither likely or unlikely to; these services were primarily oncology (n=8/13) and cited a lack of awareness of services and/or pathways, issues with access and a belief that their patients were not suitable for rehabilitation, for example because they were too frail or had advanced cancer. While rehabilitation is not appropriate for all people experiencing cancer-related pain, at many stages in the cancer pathway there are clearly documented benefits to rehabilitation, such as increased quality of life, reduced fatigue and improved cognition (Sleight et al 2022). Further exploration of healthcare professionals’ awareness of the potential benefits of rehabilitation services in cancer-related pain is needed to understand if there are barriers in referring patients to these services.
The survey explored respondents’ satisfaction with the current provision of cancer-related pain services. Around 57% (n=36) of respondents reported they were satisfied with the provision of local cancer pain services, 21% (n=13) were dissatisfied and 22% (n=14) were neither satisfied nor dissatisfied (Figure 4). Further work is necessary to explore this aspect in greater detail and perhaps to explore if these respondents are aware of additional services available in their setting. A potential way of improving satisfaction and access to cancer-related pain services is to have a local directory that can be accessed by healthcare professionals and patients.
Respondents’ free-text comments identified several potential ways to improve access to specialist cancer-related pain services (Table 1). Notably, there was a focus on improved awareness of services and their referral pathways; this could take the form of a national or regional database that healthcare professionals and patients could access to identify services available to them in their area. Some respondents also called for improved knowledge and understanding of the assessment and management of cancer-related pain to ensure that healthcare professionals have adequate knowledge, confidence and skills to support those affected by it.
The lack of education available to healthcare professionals on cancer-related pain is well documented and there is a need to address this issue at all levels of practice (Bouya et al 2019, Galligan and Wilson 2020). Many respondents suggested there should be one dedicated service staffed by healthcare professionals with cancer-related pain expertise; however, others indicated that pain should be addressed in all settings and should become part of standard care. This is echoed by the Faculty of Pain Medicine of the Royal College of Anaesthetists et al (2019) framework, which states that all healthcare professionals should be able to recognise and assess the effects of cancer-related pain. Patients who require specialist input and advice should then be able to access services in which there is a collaboration between pain and cancer services, for example through weekly MDT meetings.
To the authors’ knowledge, this was the first national survey to map the current provision of cancer-related pain services in the UK. The most significant limitation was the low response rate, with no responses from services in Scotland, Wales or Northern Ireland. Using only one social media platform for recruitment may have limited the reach and response rate. In the future, using multiple platforms and directly contacting pain, palliative care and oncology service leads across the UK could improve the survey response rate and gain a better understanding of the services available.
The survey focused on all types of cancer-related pain, including pain during treatment, palliative pain and persistent late effects pain. Management of these different pain types varies, and access to services and levels of satisfaction may differ for each type. Therefore, it is not possible to draw conclusions regarding the management and provision of cancer pain services across the UK.
The incidence of cancer-related pain remains significant, and its effects are far-reaching. However, this survey has identified that in many areas there appear to be issues with accessing services that provide support for people experiencing cancer-related pain. Further research is necessary to develop cancer-related pain services and to support healthcare professionals in gaining the knowledge, skills and confidence required to adequately care for patients affected by cancer-related pain.
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