Scotland's Cancer Strategy Evaluation: Experiences of patient access and engagement with cancer treatment and support in rural and island areas, and in areas with higher deprivation

Chapter 1. Introduction and methods

This report presents findings and recommendations from an evaluation exploring how cancer treatment and wider support is accessed and experienced by people living in more deprived and rural and island areas of Scotland. The evaluation was carried out by Jane Eunson, Erin Simpson and Laoise Rogers at Ipsos Scotland and Dr Naomi White, Glasgow Caledonian University, on behalf of the Scottish Government.

Policy overview

By 2033, cancer incidence in Scotland is projected to increase^[13] by more than 15 per cent compared with pre-pandemic levels. This will require the expansion of Scotland's diagnostic and treatment capacity. Although cancer survival has improved^[14] overall in Scotland over the past few decades, there are clear social and economic inequalities in incidence rates and the outcomes faced by those living with cancer. People living in the most deprived areas in Scotland (SIMD quintile 1)^[4] are around 20 per cent more likely to be diagnosed with cancer, and face mortality rates^[15] around 30 per cent greater, compared to those living in the middle quintile. Meanwhile, a complex and multifaceted relationship between rurality and poorer cancer outcomes ^[16] has been observed. Reducing health inequalities such as these is an important focus for the Scottish Government, in line with its National Performance Framework^[17], which includes both increasing the wellbeing of people living in Scotland and reducing inequalities as part of its purpose.

In June 2023, the Scottish Government published its Cancer Strategy 2023-2033^[5], aiming to improve cancer survival and provide excellent, equitably accessible care. The Strategy sets out 11 priority ambitions, including a cross-cutting ambition, ‘Tackling Inequalities’. It is supported by the Cancer Action Plan 2023-2026^[6], which covers actions that will lay the foundation for new, improved and sustainable ways of delivering cancer services across Scotland. The strategy provides the context for this evaluation, which was intended to help inform thinking about service improvements or developments that may be needed to ensure its vision of a ‘compassionate and consistent cancer service’ which ‘provides excellent treatment throughout the cancer journey’ can be met. The evaluation focused on rural and island and more deprived areas of Scotland in particular. Other key elements of the vision set out in the strategy that are particularly relevant to this evaluation include a desire to embed ‘Realistic Medicine’^[3] across cancer services. The Strategy emphasises that ‘people with cancer will be informed about their treatment and care and possible outcomes’. It places an emphasis on clinicians taking a more open, partnership approach to decisions about treatment. Implementation of this approach was considered as part of this evaluation (see Chapter 4). The Cancer Strategy also places emphasis on holistic, person-centred care and optimising quality of life for each individual. It emphasises the need to take account of people’s non-clinical needs too, and frames mental health as part of ‘Basic Care’ in its ambitions. This is particularly relevant to the evaluation’s focus on access and engagement with non-clinical support.

Evaluation aims

While there is administrative and quantitative data on patient experience^[18], such as the Scottish Cancer Patient Experience Survey^[19], the evidence base on access to treatment and engagement with services and support, among people living in Scotland’s most deprived areas and rural and island communities, is more limited. This evaluation, therefore, aimed to provide qualitative evidence on how treatment services are accessed and experienced by these target groups to inform policy actions in the next iteration of the Cancer Action Plan anticipated to be published in 2026.

The evaluation questions were:

1. What factors promote or hinder timely access to, and effective engagement with, cancer treatment services for the target groups? Including consideration of:

a. Reach, awareness and take-up – are those in rural and island or more deprived areas offered and able to access services, and do they take them up?

b. The way in which services are offered – are they suitable to the needs of those in more deprived or rural and island areas? Are they able to meet them ‘where they are’ or are there barriers that prevent patients in those areas being able to engage with treatment or support to access treatment?

c. What is offered – are services able to mitigate the barriers people in more deprived or rural and island areas face?

2. How can cancer services be further developed to ensure timely access to treatment and improved experience of services for people in these groups?

The evaluation also considered the support provided by two key national initiatives which aim to help people accessing treatment by focusing on the holistic needs of the individual and person-centred care:

• Improving the Cancer Journey (ICJ), which is intended to keep the person with cancer and their family and supporters at the centre of their care. Underpinned by a holistic needs assessment and care planning process, ICJ allows individuals to access timely support that is relevant, appropriate, and sufficient for their needs through a key support worker.
• Single Point of Contact (SPoC), which is central to Ambition 7 of Scotland’s Cancer Strategy, ‘Person-Centred Care for All’. SPoC aims to enhance existing services by providing dedicated person-centred support through the cancer pathway, helping to ensure people with cancer are at the heart of all decisions and actions involving them.

The purpose was not to evaluate patient experience of ICJ and SPoC (a wider evaluation of ICJ^[20] was published by Edinburgh Napier University, in December 2024, and there has been ongoing knowledge gathering of the impact of SPoC, including Healthcare Improvement Scotland’s scalability assessment^[21] in March 2025). Rather, the evaluation explored the extent to which these initiatives supported patient access to and engagement with treatment and support services.

Report conventions

Following discussions with stakeholders, and subsequently with the Scottish Government, it was agreed that when referring to ‘treatment’ services, a broad definition, including both clinical ‘anti-cancer’ treatment (e.g. surgery, chemotherapy, radiotherapy) and wider forms of treatment and support (e.g. physical, nutritional, emotional, psychological), should be applied, reflecting the known importance of holistic care to outcomes. This is what ‘treatment and support’ refers to throughout the report.

In referring to individuals with experience of cancer treatment and support, we have used ‘patient(s)’ throughout for brevity.

Case study areas are not named in the body of the report, to protect staff and patient anonymity. The term ‘rural and island area’ is used to refer to any of the case studies that are rural and/or island. While recognising that the other case study areas encompass a range of SIMD quintiles, given the evaluation’s focus on the experiences of patients living in the most deprived areas and for ease of description, the term ‘more deprived area’ is used.

Overall evaluation approach and framework

Case study selection

The evaluation took a qualitative approach, to fully explore patients’ journeys and capture the complexities of how barriers and facilitators impacted their access to, and experience of, cancer treatment and support.

Six case study areas were selected. Three areas were chosen primarily for their rurality: Dumfries and Galloway, NHS Highland, and Na h-Eileanan an Iar (Western Isles) and three based on their level of deprivation: Dundee City, Glasgow City, and West Lothian. The six areas also have variation in health systems, facilitating exploration of any context dependent differences in patient experiences (see case study areas - key characteristics).

Ipsos and the Scottish Government worked with health boards and local authorities to secure approvals for access to patients and staff in each of the case study areas. The approval process varied according to local requirements, with some areas requiring Caldicott Approval^[22].

Evaluation approach

The evaluation combined a realist approach and the COM-B model of behaviour change which are described below.

Realist approach

The evaluation was informed by a realist approach^[7], which seeks to understand ‘what works, for whom, under what circumstances and how’. The scoping phase for this evaluation confirmed that there was significant variation across the case study areas in terms of the organisation of treatment services, and that this needed to be accounted for in the evaluation. The patients interviewed were also in a variety of circumstances, in relation to both their cancer diagnoses and other factors (see the discussion of patient recruitment below).

This realist approach informed each stage of the evaluation, including:

• Case study selection (selecting a mix in terms of geographical contexts, healthcare systems, ICJ and SPoC arrangements).
• Sample design (with quotas on characteristics of patients including: age, gender, length of time since diagnosis, ethnicity, comorbidity, and household situation – living alone or with partner/other family members). These quotas proved difficult to achieve, see the discussion of patient recruitment below; no quotas were set on the characteristics and roles of staff.
• Topic guides for both staff and patients (including questions which helped the evaluation team to understand the circumstances of both patients and the local context e.g. treatment services, transport etc.).
• Analysis and reporting (structured and systematic approach to analysis of qualitative data, drawing out contextual and subgroup differences).

COM-B model of behaviour change

Both the rapid evidence review (see section on the rapid evidence review below) and scoping interviews (see section on the scoping phase below) highlighted that there are multiple influences related to engaging with treatment and support, suggesting that a behaviour change lens would be useful in identifying both internal and external drivers of behaviour as it relates to accessing and engaging with cancer treatment and support. Given its use in the health field, the COM-B model^[8] of behaviour change was agreed as the specific framework to be used. This model recognises that behaviour is influenced by many factors and is widely used to identify what needs to change for a behaviour change intervention to be effective. According to this model, for any behaviour change to occur a person must have the:

• Capability – Are people psychologically and physically able to carry out the behaviour?
• Opportunity – Do people have the social and physical opportunity to carry out the behaviour?
• Motivation – Do people need or want to carry out this behaviour more than other competing behaviours?

The model was used in designing the discussion guides for interviews, ensuring that the full range of influences on the target groups’ experiences of accessing cancer treatment and support were explored. However, the discussion guides were used flexibly as it was important that participants were able to tell their story in their own terms. COM-B was also used as a lens in data analysis.

It should be noted that the purpose of using the behavioural lens is not to locate responsibility for accessing cancer treatment within individuals. Rather, a behaviour change lens involves recognising both the internal and the external drivers of behaviour, all of which may be impacted positively or negatively by the support available to patients.

Evaluation elements

Scoping phase

The focus of the scoping phase was to ensure that the evaluation built on existing research and knowledge, and to develop an appropriate approach to the qualitative interviews. The key elements of the scoping phase were:

• Creation of Advisory Groups (see the section on patient advisory groups below for more detail).
• A rapid evidence review of existing literature (from Scotland and the UK) on barriers for those in rural and island and more deprived areas in accessing cancer treatment (see the rapid evidence review section below).
• Review of research and data on ICJ and SPoC to ensure the evaluation built appropriately on what was already known, and to inform the sampling of case study areas.
• Review of the theories of change developed for the Cancer Strategy^[1], to inform Ipsos’ understanding of the assumptions around how treatment services, and ICJ and SPoC, are intended to work to improve outcomes for patients.
• Consultation with 11 key stakeholders (across nine interviews), including ICJ and SPoC key contacts in each of the six case study areas, and one national stakeholder, to discuss the current service delivery context, suggested case study site selection, their views on the overall evaluation approach suggested, and to check any approvals needed. These consultations informed the overview of case study areas presented in this chapter.
• Securing approval and local permissions for the evaluation from the local NHS board and local authority in each case study area (where relevant, some ICJ services are managed by local authorities).

Patient interviews

Ipsos conducted qualitative interviews with patients in each case study area. Fieldwork took place between May and December 2025, having been extended due to recruitment challenges. The impact of these recruitment challenges is noted under evaluation scope and limitations.

Interviews were carried out online (by video), by telephone or face-to-face, depending on patients’ preference. They typically lasted around 45 minutes to an hour. It was made clear to patients that they could take a break or stop the interview at any time if it felt too long or they would rather resume on a different day, or if they changed their mind about participating. Interviews were structured using a discussion guide designed by Ipsos, in collaboration with the patient Advisory Groups and the Scottish Government (Appendix A). To begin each interview, after some questions to gather details about patients’ diagnosis and circumstances, they were asked open questions about their story from the point at which they received their diagnosis, until present day, or the end of their treatment. They were then asked general questions about what helped or hindered their access to treatment and support. Interviews then covered specific topics related to each dimension of the COM-B model of behaviour change which may have helped or hindered them to access and engage with treatment and support. For example:

• Information provided about treatment and support, and discussions about treatment with medical professionals or other people
• Travel to treatment and support
• Managing treatment and support around other commitments
• The use of phone or video appointments
• Emotional support.

Some participants were invited to take part in a follow-up interview a few months after their initial interview, to further explore reflections on their treatment journey and any new/emergent barriers or facilitators. Interviews were structured using a discussion guide designed by Ipsos, in collaboration with the Scottish Government (Appendix D).

Ipsos selected these participants based on their consent to recontact at their initial interview and the stage they were at in their treatment journey. Patients who had previously said they were expecting to have further treatment/appointments were invited to take part again.

The target was 48 interviews across the case study areas (with eight interviews in each of the six areas), with the target achieved in four of the six areas, and 50 interviews completed overall.

An additional target of 12 second interviews was set across the case study areas, with 7 interviews completed. Fewer follow-up interviews were achieved as there were insufficient numbers of appropriate interviewees that could be recruited: either because patients had finished their cancer treatment some time ago when the first interview was conducted, and the interview had already captured their reflections; or because the first interview was carried out towards the end of the fieldwork period and it was judged that experiences of treatment and support were unlikely to have significantly changed in the remaining fieldwork period. This under-recruitment to follow-up was judged not to have substantially impacted findings since the sample included a relatively large number of patients diagnosed between April 2023 and June 2024, who could comment on barriers and facilitators throughout their journey.

Participants received £35 in vouchers for each interview as a thank you for their time. The final achieved numbers are shown in Table 1.1. A full sample breakdown of patient demographic characteristics is provided in Appendix B.

Table 1.1: Patient interviews

Case study area	Total number of 1st interviews with patients	Total number of 2nd (follow-up) interviews
Dundee City	9	1
NHS Dumfries and Galloway	9	2
Glasgow City	7	0
NHS Highland	10	1
NHS Western Isles	5	2
West Lothian	10	1
Total	50	7

Patient recruitment

The precise recruitment approach in each area was informed by discussions with local key ICJ and SPoC leads. Considerations included the patient data that was accessible to NHS staff, staff capacity to support the evaluation and ways to maximise response. There were some limitations to this recruitment approach, which are discussed in the section on evaluation scope and limitations below.

These key contacts were asked to contact patients who had received a diagnosis of cancer since April 2023, using information about the evaluation provided by Ipsos. They were asked, as far as possible, to invite a random selection of patients to try to ensure that the evaluation did not only hear from individuals who were most engaged with services. Patient personal data was not available to Ipsos unless patients chose to contact the evaluation team directly in response to the non-personalised invitations to participate in the evaluation.

Leads in the more deprived case study areas were asked to invite patients living in SIMD decile 1 and 2 areas, though in one area this criterion was widened to include patients living in SIMD deciles 3, 4 and 5 due to having exhausted the SIMD decile 1 and 2 sample. In the rural and island case study areas, recruitment focused on patients living outside Urban Areas, according to the Scottish Government’s 8-fold Urban Rural Classification^[23].

Ipsos and the Scottish Government agreed targets on gender, disability status, ethnicity, comorbidity, household composition, and length of time since diagnosis. However, recruitment proved to be challenging and it was not possible to meet a number of these targets (see Appendix B for full break-down of the achieved sample).

Patients were asked to contact Ipsos directly if they were interested in taking part. Ipsos then sent them an information sheet (Appendix C) and a copy of the evaluation privacy notice and conducted an initial screening questionnaire with each person over the phone, to determine their eligibility for the evaluation. During the screening call, the researcher explained the purpose of the interviews, answered any questions, and gave the individual the opportunity to decide if they wanted to take part.

Staff interviews

The Ipsos evaluation team conducted qualitative interviews with staff in each of the six case study areas.

Recruitment was initiated via key ICJ and SPoC contacts in each case study area, who sent out invitation emails to staff on Ipsos’ behalf. The emails explained the purpose of the evaluation, what would be involved in taking part and the fieldwork dates, and invited staff to contact the research team directly to express their interest in taking part. Those who agreed to take part were contacted by the evaluation team and provided with an information sheet (Appendix E) and privacy notice and an interview was arranged at a time that suited the staff. In each area, Ipsos spoke to staff across a range of roles. Staff interviewed included ICJ support workers, SPoC support workers (also referred to as navigators and cancer coordinators), cancer service managers, nurses, doctors and local third sector staff. There were some limitations to this recruitment approach, which are discussed in relation to the evaluation scope and limitations below.

Interviews were carried out online (by video) or by telephone, and typically lasted around an hour. Some interviews were with small groups of staff and so lasted around an hour and a half. Interviews were structured using a discussion guide, designed by Ipsos in collaboration with the Scottish Government (Appendix F). To begin each interview, after some questions to gather details about their job roles and interaction with patients, staff were asked about their general views on barriers and facilitators to patients accessing cancer treatment and support. Interviews then covered specific topics related to each dimension of the COM-B model of behaviour change. For example:

• Capability – questions around what works well and less well in terms of helping patients to understand their treatment and support options, and to feel that they have a say in decisions about their treatment.
• Opportunity – questions around physical and environmental barriers such as travel and distance; money; time (e.g. time off work, other responsibilities), and other health conditions or disabilities. Additionally, questions around social influences such as family support, community networks, and other people’s views or experiences of cancer treatment and support.
• Motivation – questions around beliefs or attitudes that influence patients; emotional and psychological influences, and what support is available to support patients emotionally and psychologically.

The target number of staff to be interviewed was 48 (with eight staff to be interviewed in each of the six areas). Table 1.2 shows that the target was achieved in five of the six areas, and the overall target exceeded with a total of 66 staff being interviewed. Several interviews were carried out in small groups, depending on staff availability and preference. Target numbers of staff in each staff category were not specified in order to remain flexible, recognising the potential for recruitment challenges, and that the model of service delivery and treatment was different in each case study area. Fieldwork took place between March and September 2025.

Table 1.2: Staff interviews

Case study area	Total number of staff interviewed	Number of individual interviews (1 participant)	Number of paired interviews (2 participants)	Number of group discussions (with more than 2 participants)
Dundee City	9	7	1 (2 participants)	0
Dumfries and Galloway	7	7	0	0
Glasgow City	19	5	1 (2 participants)	3 (3; 4; and 5 participants)
NHS Highland	9	7	1 (2 participants)	0
NHS Western Isles	11	5	3 (6 participants)	0
West Lothian	11	4	2 (4 participants)	1 (3 participants)
Total	66	35	8 (16 participants)	4 (15 participants)

Patient advisory groups

To help shape the evaluation approach, Ipsos recruited nine individuals with recent experience of cancer treatment in Scotland to work with the evaluation team over the lifetime of the project. For practical reasons, two separate groups were formed (one with people living in more deprived areas, and one with people living in rural and island areas). The groups met four times over the course of the evaluation and advised on: the overall approach to recruiting and interviewing people about cancer treatment; the recruitment materials and draft questions in the discussion guide; initial evaluation findings, and recommendations for the Scottish Government based on the evaluation findings. Each advisory group member was paid £100 (cash or online voucher) for each meeting they attended to thank them for their time.

Your Voice, Inverclyde Community Care Forum agreed to provide support for the group including people living in more deprived areas. A Clinical Nurse Specialist (CNS), whose caseload includes people living in rural and island areas, agreed to help with recruitment for the group involving people in those areas. To support recruitment, Ipsos provided an information sheet (Appendix G) about the Advisory Group and a privacy notice explaining how personal data would be used, to share with those who may be interested.

Ethical considerations

The evaluation team carefully considered ethical risks for engaging with patients and staff. Both Scottish Government and Ipsos ethics reviews were completed for the study and the researchers worked in line with the Ipsos disclosure policy.

Ipsos gathered informed consent from all participants prior to data collection, emphasising the voluntary nature of their participation. This involved providing information about the purpose, methods and intended uses of the evaluation and what taking part would involve. Participants were able to discuss their accessibility needs with the evaluation team. To minimise burden and barriers to participation, fieldwork was conducted at a convenient time for participants.

Regarding patient interviews specifically, Ipsos took a trauma-informed approach to designing and conducting fieldwork. All researchers were experienced in conducting interviews with vulnerable audiences and had completed training on trauma-informed research. Interviewers took measures such as:

• Offering patients as much flexibility as possible around how they participated in the evaluation (e.g. over the phone, face-to-face) and emphasising that interviews could be rescheduled or cancelled if they no longer felt able to participate.
• Emphasising that patients should only share as much of their experiences as they wanted to.
• Structuring interviews so that they started and ended with less sensitive topics.
• Emphasising that participants would receive their payment regardless of whether or not they finished their interview.
• Sharing links to sources of emotional and practical support with each participant after their interview.

Regarding working with the Advisory Groups, the process included:

• An initial session where all group members agreed preferred terms of reference and ways of working.
• Ensuring meetings were not too long and included a break where appropriate.
• Sending materials to group members in advance to allow time for them to read things beforehand, while emphasising there was no pressure to do so.
• Having consistent representation from Ipsos at each meeting, to allow for relationships to be built.

Data analysis and recommendation forming

The purpose of analysis in qualitative research and evaluation is not to assess the prevalence of particular views or experiences, but to reveal the depth and diversity of lived experience. It should reveal patterns, similarities and differences, while also retaining the unique character of individual experiences. The evaluation team’s approach to analysis of qualitative data was based on a systematic thematic approach, intended to produce findings that were both relevant to the evaluation questions and clearly grounded in participants’ accounts of their experiences.

Interviews were audio recorded. Interview transcripts were generated from these recordings via the automatic transcription tool Ipsos Facto, a secure AI assistant registered for this purpose on the Scottish AI Register. Transcriptions were coded and thematically analysed in Excel. To organise the data, researchers summarised each interview (using transcripts) into an agreed thematic ‘framework matrix’. This framework showed individual participants along rows with themes (correspondent to the COM-B model) down columns. Summarising and organising the data in this way enabled it to be systematically interrogated to identify the full range of views and experiences in the data. Approaching analysis thematically helped facilitate collective review of all perspectives on a particular issue or topic. It enabled comparison of staff and patients’ views, both within and across case study areas as well as comparison across subgroups. The evaluation team also discussed and challenged each other’s interpretations of the findings.

Stakeholder recommendations workshops

Ipsos held three workshops: one with the Patient Advisory Group in a more deprived area, one with the rural and island Patient Advisory Group and one with the Scottish Government’s Cancer Strategy Monitoring and Evaluation Framework Advisory Group, to share draft findings and discuss potential recommendations. This ensured that recommendations were grounded in insights from both those with lived experience and those with policy and practice expertise. The final recommendations are presented in Chapter 8.

Evaluation scope and limitations

As discussed in the section above that describes the case study selection, the evaluation team and the Scottish Government carefully considered the selection of case study areas to ensure they included a range of features likely to impact on patient experience. However, a case study approach inevitably means there may be specific local variations in services or delivery in other rural and island areas or more deprived areas, not included in this evaluation, that are not captured. Therefore, the findings from this evaluation should not necessarily be considered as being transferable to all more deprived and rural and island areas across Scotland.

Furthermore, this evaluation did not include interviews with patients living in areas that are neither rural and island nor deprived, limiting the extent to which the evaluation team could disentangle issues which were a specific result of these contexts versus wider issues that may affect other patients. Where it appeared, however, that rurality and/or deprivation had particularly impacted patient experiences, this has been highlighted in the report.

Although case studies were selected to capture a range in terms of service organisation, the evaluation is limited in the extent to which conclusions can be drawn on the basis of such variation. This is due to the necessary trade-off between the breadth achieved through the case study approach, and the depth of comparison across areas and subgroups that was possible due to the sample size in each area. Cross area comparisons were further limited by the fact that there was substantial variation in the achieved sample profile of both staff and patients in each area. Where specific demographics of patients were identified as being particularly influenced by particular barriers or facilitators, this has been noted.

In respect of patients, specifically, it is likely that patients facing the most severe challenges in accessing and engaging with cancer treatment and support did not opt in to the evaluation. Interviews with staff helped ensure that the range of challenges faced by patients have been considered, but it is important to note that some patients’ experiences may not be fully represented. Furthermore, despite having set recruitment targets for various demographic groups, recruitment proved to be challenging generally and therefore some groups are underrepresented (men, people aged under 50, and those living alone) or not represented in the evaluation (minority ethnic groups). This means that achieved interviews are from a less diverse participant group than originally intended. For reference, as part of wider analysis to support action to tackle health inequalities relating to cancer services and support, an evidence review of ethnic and racialised inequalities in cancer services^[24] was published by the Scottish Government in November 2025.

Report structure

The rest of this chapter presents context to the evaluation by summarising a rapid evidence review, and key characteristics of the chosen case study areas. The report then goes on to present the evaluation findings, organised thematically, in Chapters 2 to 7. Each chapter discusses key challenges and facilitators and highlights relevant recommendations. Actions considered to be directly actionable by staff commissioning and working in cancer care are indicated with an asterisk. To ensure alignment with Scotland’s Health & Social Care Service Renewal Framework^[9], a number of the recommendations include the Principle or Principles to which they relate. Chapter 8 presents final conclusions, recommendations and suggestions for further research.

Rapid evidence review

Existing evidence

The evaluation team carried out a rapid evidence review of existing literature on the barriers for those in rural and island and more deprived areas in accessing cancer treatment. The review aimed to identify what was already known, to help contextualise and inform development of the topic guides. Existing literature on barriers for those in rural and deprived areas in accessing cancer treatment was gathered through desk research. Theories of change for the Cancer Strategy’s ambition areas, links to relevant policy frameworks, and published evaluation and analysis relating to Scotland-wide initiatives connected with the Cancer Strategy that may have implications for access and engagement with treatment (including ICJ services and SPoC initiatives) were shared by the Scottish Government. Academic literature was identified by Dr Naomi White.

Rural and island areas

The Scottish Government recognises that healthcare service delivery in rural and island areas can be challenging. There can be complex and interrelated factors at play including (but not limited to) an ageing population, higher cost of living, ‘hidden’ poverty, poorer transport and digital connectivity, and difficulties recruiting and retaining staff^[25]. This evaluation explores whether and how these factors feature (and, where possible, how they interact) in both shaping people’s cancer treatment journeys and impacting on local cancer services. It also explores potential mitigations to these challenges which support patients to access high quality cancer care.

A review and meta-analysis found generally poorer outcomes for people with cancer living in rural areas with possible contributing factors identified including varying travel burden, health service organisation and access to care, as well as differences in patient and doctor behaviours in rural compared with urban settings^[26].

It is widely acknowledged in the literature that there is no single definition of rurality but rather multiple levels and characteristics of rurality across Scotland ^{[27], [28]}. It has been argued that accessibility may be more important than rurality for engagement with services^[29]. For instance, the impact of rurality on cancer care may be mitigated or exacerbated by proximity to primary care but also continuity of care and perceived availability or service pressures ^[30].

Distance from specialist treatment is a common theme in the literature reviewed^{[27],[30], [31],[32],[33], [34], [35],[36],[37], [38], [39],[40], [41], [42], [43], [44], [45], [46]}. The literature highlights various implications for patient experience, including: people engaging with “less optimal” (Cancer Research UK, 2022, p.17) treatments to avoid travel ^[47]; increased travel costs; disruption to work and family life^{[34],[41],[48]}; mental and physical strain^[39],[41]; and amount of contact time with professionals^[16]. Some patients, especially older patients and those with comorbidities, find the prospect of repeated long trips for treatment "daunting" and hard to manage (Smith and Campbell, 2004, p.189)^[39]. Digital solutions such as the ‘Near Me’ video consultation service are being used in Scotland to allow patients to speak to health professionals remotely. However, there may be issues with digital connectivity and digital literacy^[30],[62]. Given the thorough coverage of distance from treatment in the literature, it is important for this evaluation to add value by contextualising experiences within specific local service contexts and to understand what, if anything, mitigates this barrier or reduces its negative impacts.

The intersection of rurality and socioeconomic deprivation may compound disparities in cancer care provision^[44]. While Maxwell and colleagues’ (2023) sample reported participants living rurally were significantly less-deprived, with only 6.8 % in SIMD 1 (most deprived) compared to 25.5 % of urban-dwellers^[28], it is important to note that “deprivation and rurality do coexist in Scotland and rural individuals residing in areas of high socioeconomic deprivation are likely to be under-represented in research studies but particularly at risk of inequalities in health outcomes” (Duncan et al., 2023, p.11)^[27]. It is therefore important that the evaluation reflects contextual information on the socio-economic profile of rural case study sites, and on participants’ individual economic circumstances.

The impact of rurality and/or deprivation may vary at different points across the cancer trajectory, from initial identification^[38], acute and longer-term treatment^[30] as well as post-treatment^[27] or end of life care^[49]. Experiences can vary for those with different cancer types – for example, it has been found that some populations, such as those with lung cancer, are disproportionately affected by the intersection of rurality and deprivation^[28]. It will also be valuable to understand buffers and resilience factors which protect some rural families from distress and adverse outcomes^[41],[43].

Another theme identified in the literature is a greater tendency in rural areas towards self-sufficiency and a reluctance to ask for help^{[35],[38],[41]}. It is suggested that this may delay patients from presenting to health services and lead them to be more accepting of diagnostic and treatment delays. These issues are explored in interviews with patients and staff.

More generally, literature highlights that rural patients experience feelings of isolation, fear of recurrence, and a lack of emotional support; lack of information about treatment and side effects; and lack of support services^[43],[42]. Some of these issues are unlikely to be limited to rural and island populations but there may be particular challenges owing to geographic isolation. This evaluation explores access to (and take-up of) information and emotional support that may help mitigate these issues during the cancer treatment journey.

More deprived areas

Some of the issues highlighted in the literature on rural and island areas will also be relevant here. However, it is key that the evaluation provides insights specific to areas with higher levels of deprivation, which in Scotland tend to be concentrated in more urban areas^[50]. Deprivation is defined and measured in a range of ways in existing literature^[51]. For our purposes a broad view was taken and literature is included using a range of terms such as ‘deprivation’, ‘socioeconomic status’ and ‘low income’.

There is limited existing quantitative data on deprivation and cancer treatment. Cancer Research UK (2022) note that “there is no routinely reported data on the cancer treatment people in Scotland receive that provides breakdown by deprivation”(p.17)^[47] and Pfizer (2024) highlight that “no treatment time data is published by deprivation”(p.13)^[52]. However, it is well known that earlier diagnosis means more treatment options and improved outcomes. People with a lower socioeconomic status are more likely to present later and have a more advanced diagnosis and go on to have poorer outcomes, across cancer types^{[53], [54],[55],[56],[57]}. Having comorbidities is identified as a particular factor in poorer outcomes for those who are most socio-economically disadvantaged^[54]. The presence and impact of comorbidities is something explored in interviews with staff and patients.

Lower health literacy and self-advocacy (see glossary of abbreviations and terminology) is another key theme in the literature identified^{[41],[58], [59], [60]}. For example, Cancer Research UK (2022)^[47] found that people in ‘routine or manual’ occupations (used as a proxy for deprivation) were less likely to be aware of the symptoms of cancer and more likely to think symptoms related to an existing condition. They were also more likely to delay seeking medical advice, have difficulties getting a doctor’s appointment, have difficulty explaining symptoms via phone or video call, and feel less confident in describing their symptoms. Respondents to the Cancer Strategy consultation^[60] highlighted that lower health literacy and self-advocacy impact on ability to navigate systems and explore treatment options. Stormacq et al.’s systematic review (2020)^[59] found that “Socioeconomically disadvantaged groups in particular present with the weakest health literacy levels, suggesting that differences in health literacy levels contribute to health disparities” (p.1389). It is therefore important that the evaluation explores potential mitigations to this barrier, for example in terms of how information is presented and discussed to patients, and what might help them feel they are able to make an informed decision^[61].

As noted above in relation to rural and island areas, digital solutions are being used to allow patients to speak to health professionals remotely. While not specific to areas of deprivation, it is worth noting that people with lower incomes are more likely to experience digital exclusion ^[62]. Experiences of phone or video consultations is something explored with people with a cancer diagnosis, in both target groups.

Literature also highlights that while the physical distance between treatment centres is often less in urban than rural areas, transport systems can nonetheless be challenging, expensive and difficult to navigate^[45]. The financial cost of travel is noted as a particular challenge for patients who have had to give up work due to their illness or take time off work for appointments^[46]. More broadly, McCutchan et al. (2016) found that (prior to diagnosis) “economic hardship meant fulfilling basic day-to-day needs such as finding money for food were prioritised over medical help seeking” (p.1).^[63] Interviews sought to get a sense of an individual’s financial situation (while avoiding being overly intrusive) and probed specifically on financial barriers that may prevent people from taking up treatment or certain types of treatment^[64].

Case study areas – key characteristics

Glasgow City

Summary of cancer service landscape

In Glasgow City, which sits within NHS Greater Glasgow and Clyde, all cancer treatment is provided within the health board. It has a tertiary care centre, the Beatson West of Scotland Cancer Centre, which is the largest in Scotland and the lead centre on non-surgical cancer care for the West of Scotland. Services at the Beatson include an Acute Oncology Assessment Unit. Cancer treatment is provided at several hospitals in NHS Greater Glasgow and Clyde. Each patient has a named oncologist, but staff work in Multidisciplinary Teams (MDTs), so patients may also see Registrars, Clinical Nurse Specialists (CNSs), and pharmacy (a key part of the team), depending on the stage of their treatment journey and the inputs needed. CNSs are patients’ main NHS point of contact during treatment.

Third sector services available locally include, but are unlikely to be limited to, the Beatson Cancer Charity, and a Maggie’s centre on the Beatson site; Macmillan Cancer Information and Support, which is based within several centres and hubs across Glasgow, including at the Beatson; and several other charities.

ICJ – key features

ICJ has been running for over ten years in Glasgow, as a partnership between Glasgow City Council and Macmillan Cancer Support. It aims to provide support to anybody in Glasgow with a cancer diagnosis, whether financial, emotional, practical, or other support. People who are supporting someone with cancer can also access ICJ. There is a team of eight Holistic Support Officers (elsewhere referred to as ICJ link workers). ICJ also has a housing specialist that works alongside them. The ICJ office is in the centre of Glasgow, but the team also does outreach in hospitals and libraries and they can do home visits. As well as meeting patients face-to-face, Holistic Support Officers speak with them over the phone. Due to the length of time that ICJ has been operating in Glasgow, and the Council being a key partner, the team are able to access information which helps them support patients. They have access to clinical portals so they can see what letters have gone out to patients, including their diagnosis. They also have access to the council tax system so can see if there are any issues with someone’s council tax, and whether they are receiving benefits. Additionally, they have links with the social work system, so can see if people have any support needs, and can facilitate quicker access to occupational therapy.

Everyone in Glasgow used to automatically receive a letter informing them about ICJ and giving them the option to opt-out of further contact from them. Patients also received another letter after six weeks. However, this approach was stopped due to the costs involved and a desire to move to an opt-out approach to encourage uptake. Now, ICJ relies on clinicians referring to the service, and self-referrals from patients.

SPoC – key features

Glasgow has SPoC advisors within three services who triage patient phone calls. There are three posts in urology as part of the West of Scotland regional project, live since early 2023; two posts for gynaecology, live since April 2023, and three for lung cancer, since April 2024. SPoC posts are often called ‘Navigators’. Navigators and CNSs work as a team, so that they can offer the appropriate clinical or non-clinical support depending on patient need. Navigators are trying to take some of the non-clinical or simple/protocol based aspects of work and support from CNSs, helping people navigate their diagnosis and treatment, to release CNS time to focus on complex clinical care.

Dundee City

Summary of cancer service landscape

In Dundee, which is within NHS Tayside, all cancer treatment is provided within the health board (although some surgeries, minor biopsies and procedures take place elsewhere). Cancer treatment is provided under one roof, at Ninewells, a tertiary care centre and university teaching hospital in Dundee.

Third sector services available locally include, but are unlikely to be limited to, the Maggie's centre (based at Ninewells), and CanDu (Dundee Cancer Support Network).

ICJ – key features

ICJ has been running in Dundee for seven years, as a partnership between Dundee Health and Social Care Partnership (HSCP), and Macmillan Cancer Support. There are two ICJ support workers who are part of a wider team within Tayside. They conduct holistic needs assessments (HNAs) to explore people with cancers’ practical and emotional needs before, during and after treatment and for those receiving palliative care. Referrals generally come from SPoC, CNSs and Macmillan support workers. Work is also being done with other referral partners including GPs.

Previously, anyone who was diagnosed with cancer would receive a letter inviting them to contact ICJ, but that was stopped a couple of years ago, due to associated costs and a desire to move to an opt-out approach to encourage uptake. ICJ has been conducting a test of change within the breast cancer service, of blanket referrals for all patients. This involves a phone call a couple of weeks after their diagnosis. The approach has worked well and there are plans to roll it out across all cancer services in NHS Tayside.

SPoC – key features

There is currently one SPoC navigator in NHS Tayside, who focuses on advanced disease. The SPoC supports patients with advanced cancer on the following pathways: oesophagus/hepatobiliary tract, kidney, and prostate. They proactively contact patients following diagnosis. The SPoC carries out frailty screening to ensure care is person-centred, realistic, and will not negatively impact on quality of life. The SPoC team worked closely with clinicians to develop the frailty screening process and documentation. The SPoC navigator supports patients through their clinical journey. This includes help with transport, chasing up scan results, contacting GPs, referrals to third sector and liaising between consultants. Every patient supported by SPoC receives a referral to ICJ.

West Lothian

Summary of cancer service landscape

West Lothian is within NHS Lothian, which has a tertiary oncology centre in Edinburgh (The Edinburgh Cancer Centre, Western General Hospital). The unit comprises outpatients, day chemotherapy, radiotherapy, over 70 inpatient beds, and a Cancer Assessment Unit. All treatment is provided within the Lothian health board, across several hospitals. Patients would usually have to travel to Edinburgh during their treatment and support journey but chemotherapy is available in St John’s Hospital in Livingston.

Third sector services available locally include, but are unlikely to be limited to, the Maggie’s Centre, which is based at the Western General Hospital, and Macmillan Cancer Support.

ICJ – key features

ICJ in West Lothian is a partnership between West Lothian Council, NHS Lothian, and Macmillan Cancer Support. ICJ sits within a Macmillan service which also provides support with benefits (therefore, some patients get referred in this way). ICJ also receives referrals from CNSs, and through Macmillan drop-in information and advice hubs which are staffed by volunteers. ICJ referrals go to the central administration team who then book people in for an appointment with an ICJ support worker. ICJ is hosted in a council building and there are also council buildings within most areas of West Lothian, which support workers are able to use when meeting patients face-to-face. They also speak with people over the phone, or video call (e.g. using Near Me). ICJ has contact with patients receiving cancer treatment, palliative care, and patients who have completed treatment and have ongoing needs. They also see carers for people with cancer. Their role is to listen and gather information, conduct HNAs, make referrals and signpost people. They have an ethos of self-empowerment.

SPoC – key features

SPoC, known as the Cancer Navigation Hub in NHS Lothian, launched in September 2022. The navigator team is made up of four band 4 navigators, one band 5 supervisor, and two Clinical Advisors. SPoC provides support to patients on the following cancer types: Breast, Gynaecology, Head and Neck, Lung, Melanoma, Non-Melanoma Skin, Neuroendocrine, Urology, and Colorectal. Although it is not yet integrated into every cancer pathway, the plan is for SPoC to support all cancer types. The service is primarily inbound by telephone, with all telephone calls to the CNS diverted to the navigation team. Outbound calls were tested but there was no evidence it was making a difference for patients. The service triages calls and the navigators respond to non-clinical queries. This can include appointment checks; rescheduling appointments; checking the status of referrals, and signposting to other support services such as ICJ and Maggie’s centres.

The navigators highlight ICJ to new callers to the service and, for those who wish it, a referral is made. The team are trialling a ‘warm’ transfer to ICJ. If a patient would like to be referred, the team transfers them to the ICJ team to provide seamless support and reduce multiple calls.

NHS Dumfries and Galloway

Summary of cancer service landscape

There is no tertiary care centre within NHS Dumfries and Galloway, but some treatment is provided within the health board (e.g. chemotherapy can generally be provided within the board). Some surgical procedures can be provided, but for others, patients have to travel outwith Dumfries and Galloway, as is the case for radiotherapy. Where patients have to travel, it is mostly to Edinburgh or sometimes Glasgow or Kilmarnock depending on the pathway. There is a Rapid Cancer Diagnostic Service.

NHS Dumfries and Galloway has four visiting oncologists from NHS Lothian (which feed into the South East Scotland Cancer Network (SCAN) region) covering: Breast, Lung/Sarcoma/HepatoPancreatoBiliary, and Colorectal/Upper Gastrointestinal. Other services have local consultants but feed into regional services– so patients travel to Edinburgh or Glasgow for oncologist appointments where there is no visiting oncologist. The oncology department at Dumfries and Galloway Royal Infirmary has CNSs for different cancer types and an acute oncology service which treats patients with complications from treatment to prevent admission.

Third sector services available locally include, but are unlikely to be limited to, the Macmillan Cancer Information and Support Centre (based at Dumfries and Galloway Royal Infirmary) and the Stranraer Cancer Drop In Centre, partially funded by Macmillan and located in the Macmillan Suite at the Galloway Community Hospital in Stranraer.

ICJ – key features

ICJ in Dumfries and Galloway was launched in April 2023, though it was paused in October 2024 due to staffing challenges, and later relaunched. ICJ is part of the Macmillan and NHS Health and Social Care Partnership. The team works closely with the Cancer Improvement Manager for Cancer Pathways who adds those with a new cancer diagnosis to a Cancer Tracker spreadsheet (though there are some cancer types which are not tracked). Once a CNS confirms that a patient is aware of their diagnosis, ICJ phones them to introduce the service, offering support with non-clinical concerns. They then send a Macmillan concerns checklist, either electronically or a paper version, and aim to meet people face-to-face in their own home or a community setting. They aim to follow up by calling patients back after three months to offer the service again.

SPoC – key features

SPoC in Dumfries and Galloway was launched in October 2023 and provides support for patients on Breast, Colorectal, Lung and Urology pathways, with the ambition of extending to all cancer types. All patients in these pathways are given a phone number for clinical queries, and phone calls are directed to SPoC who triage them. The SPoC team tends to deal with non-clinical requests such as needs for financial, emotional, transport support, or help with appointments. Clinical issues are passed on to the CNS, so joint working is key. The SPoC team comprises two full time posts, managed by the Clinical Services Manager. SPoC also works closely with ICJ.

NHS Highland

Summary of cancer service landscape

NHS Highland comprises Highland and Argyll and Bute local authorities. Within the Highland health board, most of the specialist cancer surgery and treatments including chemotherapy and radiotherapy are delivered at Raigmore Hospital in Inverness, which is a tertiary care centre. However, very specialised treatments are referred to centres outwith Highland (e.g. thoracic surgery and some gynaecological cancer surgery are referred to Aberdeen Royal Infirmary and very specialised radiotherapy (brachytherapy) is referred to Glasgow or Edinburgh). The Rural General Hospitals - Caithness General Hospital in Wick, and the Belford Hospital in Fort William - both offer surgery for some cancer operations, and both deliver chemotherapy. In addition, Broadford Hospital on the Isle of Skye delivers chemotherapy treatments. In Argyll and Bute, some cancer surgery takes place at the Lorn and Islands Rural General Hospital in Oban, the main cancer centre for patients living in Argyll and Bute. Diagnostic procedures and treatments are also undertaken at hospitals within NHS Greater Glasgow and Clyde. The Beatson West of Scotland Cancer Centre in Glasgow provides care and treatment for patients requiring radiotherapy or chemotherapy.

Third sector services available locally include, but are unlikely to be limited to, the Maggie’s Centre at Raigmore Hospital; Macmillan Cancer Support and North Highland Cancer Information and Support Centre, in Thurso.

ICJ – key features

NHS Highland began a partnership with Macmillan in 2019 to develop a person-centred project with different elements, one of which was providing Cancer Support Workers (elsewhere referred to as ICJ link workers) in the community. Clinicians within acute services and the community will refer patients to the Person Centred Care Service and the Cancer Support Workers from this service will contact patients to offer support primarily in relation to their non-clinical needs. This service is available across the whole of NHS Highland including Argyll and Bute. They utilise Macmillan’s electronic Holistic Needs Assessment (HNA) to assist service users in identifying any concerns they have.

SPoC – key features

Cancer Support Workers have been in place since 2022. There are currently eight support workers who cover main cancer types locally (some of them cover more than one area, e.g. haematology and melanoma are combined). All are based at Raigmore in Inverness, and managed by the CNS. Their aim is to make it easy for patients to have their questions answered, and be helped along the pathway from a non-clinical perspective (also to reduce CNS workload). Some support workers have more of an administrative role than others, in making sure MDTs have the information they need about patients. SPoC is part of the MDT, and patients are identified for referral to SPoC through weekly MDT meetings. The intention is that a Cancer Support Worker contacts patients approximately a week after diagnosis – this is done primarily by telephone, but can also be face-to-face at clinics.

NHS Western Isles (NHS Eileanan Siar)

Summary of cancer service landscape

There is no tertiary cancer care centre in the Western Isles, and there are no oncologists. NHS Western Isles has Service Level Agreements with NHS Highland and NHS Greater Glasgow and Clyde. Most patients go to Raigmore in Inverness, but some are seen in Glasgow, depending on the cancer type and travel time (e.g. all gynaecology patients are seen in Glasgow, as well as some patients with breast cancer from the Uists and Barra (or the Southern Isles). The Macmillan nursing team manages all cancer care and palliative care across the islands. CNSs, ‘cancer trackers’ (administrators who track patients to ensure each stage of their journey progresses smoothly and ensure waiting time targets are met), and SPoC have weekly meetings to discuss cases. Chemotherapy and immunotherapy can be delivered in Stornoway depending on the pathway related to the particular cancer type.

Third sector services available locally include, but are unlikely to be limited to, Western Isles Cancer Care Initiative, Hebridean Men’s Cancer Support Group, a Macmillan benefits officer (hosted by local authority), Penumbra, Western Isles Association for Mental Health (Catch23 drop-in centre), and Citizens Advice Bureau.

ICJ – key features

The ICJ service is a joint project between Macmillan Cancer Support, NHS Western Isles, and Western Isles Cancer Care Initiative. Two support workers were appointed in late 2024 and are based in the offices in Lewis and Uist. The team began taking referrals in January 2025. Referrals largely come from Macmillan nurses and the Macmillan benefits advisor. The support workers work closely with CNSs, physiotherapy team, occupational therapy team and GPs.

SPoC – key features

SPoC in the Western Isles sits within the Macmillan nursing team - funding was used to enhance the existing service by recruiting new support workers. It has been up and running since October 2022. There are two SPoC support workers - one covering Lewis and Harris, and one covering the Uists and Barra (or the Southern Isles). Support workers help with things including communication (between patients and across different parts of the healthcare system), lower-level psychological support, supporting patients and clinicians with video appointments, logistical support, and prehabilitation assessments. Support workers will be moving into doing more clinical work such as taking bloods. Patients are referred to SPoC through a number of pathways, including regular meetings with cancer trackers within the board. When SPoC becomes aware of someone, they make contact and offer support and guidance, from diagnosis to discharge.