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

Executive summary

Overview of the evaluation

The Scottish Government’s Cancer Strategy 2023-2033^[5] aims to improve cancer survival and provide excellent, equitably accessible care. The Strategy is supported by the Cancer Action Plan 2023-2026 ^[6], which sets out actions that lay the foundation for new, improved and sustainable ways of delivering cancer services.

The Scottish Government commissioned Ipsos Scotland to carry out this evaluation of cancer treatment services and the support surrounding them. It aimed to provide qualitative evidence on how treatment services are accessed and experienced to inform policy actions in the next iteration of the Cancer Action Plan anticipated to be published in 2026. Given the ambition in the Cancer Strategy to tackle inequalities, the evaluation targeted two groups which had been observed to experience poorer outcomes – people living in rural and island areas, and people living in the most deprived parts of Scotland. The evaluation used two key national initiatives – Improving the Cancer Journey (ICJ) and Single Point of Contact (SPoC) – to reach potential participants. It also considered how ICJ and SPoC initiatives supported patient access to and engagement with treatment and support services. The evaluation included:

• A scoping phase involving: a rapid evidence review of existing data and literature; consultation with key stakeholders; securing approval for the evaluation from NHS boards and local authorities.
• Qualitative research in six case study areas: Dundee City, NHS Dumfries and Galloway, Glasgow City, NHS Highland, NHS Western Isles, West Lothian. In each area there were interviews with people who had been referred for cancer treatment since April 2023 (hereafter patients), and professionals involved in treatment or support services (hereafter staff). Across the areas, there were 57 interviews completed with patients and 66 with staff.
• Advice from two Advisory Groups formed of people living in a more deprived area, or in rural and island areas, who had experienced cancer treatment.

The evaluation was informed by a realist approach ^[7], which seeks to understand ‘what works, for whom, under what circumstances and how’. The COM-B model ^[8] of behaviour change was used in designing the discussion guides for interviews, ensuring the full range of influences on the target groups’ experiences were explored. The model, which conceptualises Behaviour as the interaction of Capability, Opportunity, and Motivation, was applied to identify both internal and external drivers of engagement with cancer treatment and support, and also used as a lens in data analysis.

Service organisation and systems

Service organisation shaped access to and engagement with treatment. There was a perception that clinical treatment is concentrated in affluent urban tertiary settings, making it more challenging for patients in rural/island and more deprived areas to access. While recognising the need for some centralisation, staff and patients suggested that more visiting specialists, more local diagnostic services, and greater flexibility in treatment location would improve patient experiences for both groups.

Staff, particularly in rural and islands areas, routinely tried to reduce travel burden for patients by organising appointments on the same day and by moving appointments to a more suitable time or convenient location. Use of video consultation technology also helped but this was not used consistently across case study areas.

Processes for receiving appointment details generally supported patient engagement. However, postal delays and difficulties accessing digital links led some patients to miss or chase appointments. Communication between professionals was generally felt to work well but some patients reported communication issues which negatively impacted on their experience of treatment.

Person-centred care

Having a single member of staff to build relationships with patients and consider their holistic needs was viewed as the main facilitator to the delivery of person-centred care and supporting access to, and engagement with, treatment. Where in place, Clinical Nurse Specialists (CNSs) were central to this, acting as the main point of contact, consolidating understanding of treatment options, providing emotional support, signposting to other services, and advocating for patients. However, access to CNSs varied between and within health boards depending on cancer treatment pathways.

The Single Point of Contact (SPoC) model also supported person‑centred care, though its operation differed. In some areas it functioned largely as an inbound triage phone line while in other areas SPoC staff proactively contacted patients from diagnosis and undertook elements traditionally associated with CNS roles.

Workforce capacity was the main challenge to delivering person-centred care. Where CNSs or SPoC staff were absent or stretched this impacted on services’ ability to build a holistic picture of a patient’s needs and the timeliness of addressing patient queries.

Information provision and shared decision-making

Patients typically described feeling that they did have a say in their treatment. Accessible information was central to this. Patients valued a combination of clear verbal explanations tailored to their circumstances and written materials they could revisit and share with family. Having a family member or friend present supported recall and capacity to ask questions, though lack of funded escorts for patients from rural and island areas could limit the opportunity for this.

Patients were generally positive about the accessibility of the information provided. However, patients in more deprived areas more commonly described challenges in understanding medical terminology. CNSs and SPoC staff played a key role in patient understanding. Some patients wanted more information on what to expect during treatment, particularly the likelihood of potential side effects. Due to perceived gaps in the information provided, some patients felt alarmed by reactions to treatment or felt unsure about when to seek help for the side effects of medication.

Challenges to shared decision-making included limited staff tools/training for complex conversations and time pressure in busy clinics. Staff reported that patients in more deprived areas tended to defer more to clinicians and were less likely to question their options.

Travel and transport

Distance to treatment was a significant challenge for patients in more deprived and rural and island areas, often resulting in long travel times and, in some cases, influencing treatment decisions. Travel to appointments was particularly difficult for patients with pre-existing mobility issues. Availability and reliability of public transport options exacerbated travel difficulties, impacting access and patient experience.

Limited parking availability caused patients stress, though designated cancer centre spaces at one hospital improved this issue.

Third sector-run transport services were available across the case study areas and helped overcome travel barriers for some patients. However, provision of these services was variable within health board areas. Transport organised by the NHS to treatment in other health boards helped some patients in rural and island areas overcome barriers to attending their appointments. However, provision was somewhat inconsistent. In terms of patient transport within boards, there were strict eligibility requirements. Travel created a significant financial burden for patients from both more deprived and rural and island areas.

While patients tended to accept a certain amount of travel was necessary for medical treatment, even if it was a challenging experience for them, travel to support services was a more significant barrier to access for patients in both rural and island and more deprived areas.

Wider financial and practical issues

Having to take time off work to undergo cancer treatment, and the associated loss of income, was a key challenge faced by patients, particularly in more deprived areas. This sometimes impacted their decisions around which treatment(s) to take up or caused patients to return to work too early. Fitting cancer treatment around caring responsibilities was also identified as a challenge, practically and emotionally.

Patients, particularly those in more deprived areas, reported struggling with living costs such as food, heating and clothes while undergoing cancer treatment. Some patients also faced challenges with housing while undergoing cancer treatment – for example, because their cancer symptoms or treatment side effects meant that their living situation was no longer suitable for them.

The main way in which staff felt they could help patients financially was to make sure they were in receipt of all the benefits they were entitled to. This involved referring patients for benefits assessments and advice and helping them to complete benefits applications. However, some patients in difficult financial circumstances had their applications rejected – several times, in some cases.

ICJ teams across the case study areas were generally felt to have had a positive impact for patients that they had supported. However, the referral process into ICJ differed across case study areas which staff felt impacted the extent to which they reached patients who would benefit from support. Some patients also faced motivational barriers in asking for, or accepting, financial support. Support offered proactively by clinicians and staff in ICJ teams was a facilitator in patients being able to access support with financial and practical issues.

Staff who were proactive in arranging financial support for patients (e.g. ICJ staff and CNSs) highlighted the lack of available options. For example, staff were frustrated that a previously available Macmillan Cancer Support grant had been cut.

Conclusions

While the focused, case study nature of the evaluation means that it cannot be definitive on the extent to which certain experiences are more of an issue in more deprived and/or rural and island areas, there is evidence to strongly suggest that some challenges are experienced more keenly among patients in one or both of these areas.

Several themes emerged as being particularly important in improving access to and engagement with treatment and support services. Firstly, a person-centred approach whereby a medical professional (such as a CNS) is the patient’s primary contact throughout their journey, understanding their holistic needs, coordinating their treatment, advocating for them and signposting them to wider support (such as ICJ) if needed. Secondly, being made aware of, and being encouraged to take up, offers of support that could help to address some of their needs, for example ICJ or welfare rights services being able to support patients with benefits applications. Thirdly, the availability of financial support. Patients had incurred significant costs as a result of their treatment and financial support was either lacking altogether or insufficient to cover the costs. For patients who were already struggling financially, this additional financial pressure had significant impacts.

There was strong evidence to support funding a greater number of CNS roles across cancer pathways in recognition of the value they can add to patient experiences. Findings also point towards there being scope for initiatives like ICJ and SPoC to have a positive impact on patients’ access to services and engagement with treatment and support. However, greater work would be required to improve services.

More widely, the findings suggest that there is scope for improvement in relation to the following four areas:

• Service and workforce organisation and coordination (e.g. the location of services, the use of video consultation technology and the delivery of person-centred care).
• Implementation of a realistic medicine^[3] approach (e.g. the provision of accessible information and shared decision-making).
• Travel and transport (e.g. travel expense policies, public transport planning and availability of hospital parking).
• Patient support (e.g. availability of support, awareness of support and referral processes).

There are some challenges that go beyond the remit of cancer service planning and would require strategic partnership working across sectors and/or different parts of the health care system. The recommendations provided below serve as a starting point in considering where actions should be focused.

Recommendations

Service and workforce organisation and coordination

Recommendation 1: In line with the Community and Population Principles in Scotland’s Health & Social Care Service Renewal Framework ^[9], consider whether more services can be brought closer to patients and/or key services or activities co-located. For example: more settings providing treatment and diagnostics, which would also enable increased access to clinical trials.

Recommendation 2: In line with the Community and Population Principles in Scotland’s Health & Social Care Service Renewal Framework^[9], increase access to relevant healthcare staff, particularly specialist staff (oncologists, surgeons, radiologists) and the allied healthcare workforce in a way that works for rural and island settings, particularly in areas where local services do not exist. Learn from the experiences of other countries that have tried to do this, for example the Australian Government's Stronger Rural Health Strategy ^[10], which has a multi-pronged strategy for rural healthcare organised under three themes: teach, train, and recruit and retain.

Recommendation 3: In line with the Community and Population Principles in Scotland’s Health & Social Care Service Renewal Framework^[9], increase access to prehabilitation, and consider formally embedding it in cancer pathways to highlight its importance and increase engagement. Explore opportunities to increase understanding of the benefits of prehabilitation among staff and patients.

Recommendation 4: In line with the Digital Principle in Scotland’s Health & Social Care Service Renewal Framework^[9], increase access to video consultations by ensuring, where appropriate, these are offered to patients, with staff and digital support in place for those who face digital exclusion barriers such as connectivity, affordability and confidence. Ensure platforms are easy to use and all relevant staff are trained on use of digital technologies.

Recommendation 5: Undertake further work to understand the reasons for communication issues both within and between health boards that affect patient experiences. In line with the Digital Principle in Scotland’s Health & Social Care Service Renewal Framework^[9], consider the role of Digital Front Door ^[11] (once available) in addressing these issues and improving the interoperability of NHS IT systems.

Recommendation 6: In line with the People Principle in Scotland’s Health & Social Care Service Renewal Framework^[9], improve access to translation and interpretation facilities, to reduce language barriers in communication between patients and healthcare staff.

Recommendation 7: In line with the People Principle in Scotland’s Health & Social Care Service Renewal Framework^[9], explore options to improve communication processes to reach patients who do not have a fixed address or fixed contact number, such as people in temporary accommodation and Gypsy/Travellers.

Recommendation 8: In line with the People Principle in Scotland’s Health & Social Care Service Renewal Framework^[9] (person-centred care), provide each patient with a named individual who will build a relationship with them and support them through their cancer journey. While this evaluation found that CNSs (or SPoC staff with clinical training) are well suited to this role, where this is not feasible, learn from examples of good practice e.g. approaches that ensure full use of varied health and social care teams.

Implementing a realistic medicine^[3] approach

Recommendation 9: In line with the People Principle in Scotland’s Health & Social Care Service Renewal Framework^[9], ensure that patients are provided with plain‑language information in more than one format (written, verbal, or digital) at key points in their journey (before, during and after treatment). Consider increased use of video resources showing what patients can expect during treatment.

Recommendation 10: In line with the People Principle in Scotland’s Health & Social Care Service Renewal Framework^[9], encourage patient empowerment, including by emphasising that patients can ask questions and have the right to a second opinion. Ensure all relevant staff are trained in shared decision-making and realistic medicine³ and have resources to support them to have these conversations with patients (including resources to help staff consider cultural influences on decisions around treatment). Conversations should include clear information about treatment side effects.

Travel and transport

Recommendation 11: In line with the People and Population Principles in Scotland’s Health & Social Care Service Renewal Framework^[9], facilitate ease of travel for patients by:

• Reviewing travel expense policies to ensure these, as far as possible, reflect the cost of travel and meet the needs of patients. Consider whether it is possible to expand entitlement to an escort. Ensure all patients are aware of, and understand, travel expense policies.
• Considering whether any improvements can be made to appointment scheduling to better consider patient travel needs.
• Working collaboratively with Regional Transport Partnerships and other partners to co-design and implement transport options which support people to access treatment.
• Exploring how free parking at hospitals can be improved, perhaps through designated spaces.
• Encouraging the setup of more volunteer transport for patients in both rural and more deprived areas.
• Working with ferry companies/airport operators to accommodate patients’ needs e.g. having dedicated space for those worried about coming into contact with other passengers.

Patient support

Recommendation 12: Raise awareness among employers about the impacts of cancer treatment (particularly the ongoing effects on health post-treatment), their duties under the Equality Act 2010 ^[12], and how they can support staff. Create or signpost to existing guidance and have a means of ensuring it is implemented.

Recommendation 13: In line with the People Principle in Scotland’s Health & Social Care Service Renewal Framework^[9], improve awareness among healthcare staff, such as GPs and CNSs, and referral processes for support services for patients, including ICJ.

Recommendation 14: In line with the People Principle in Scotland’s Health & Social Care Service Renewal Framework^[9], increase and promote financial support for patients who need it to help with costs incurred (e.g. travel, accommodation, heating) and to cover loss of earnings. Facilitate prompt receipt of available support. Minimise need for patients to pay in advance if they cannot afford to. Raise awareness of critical illness cover among the general population to help cover relevant costs.

Recommendation 15: In line with the People and Prevention Principles in Scotland’s Health & Social Care Service Renewal Framework^[9], improve access to and availability of both emotional and psychological support, particularly after treatment. If there is a member of staff responsible for their care (Recommendation 8), they could determine whether a patient requires support after treatment and make the referral. Consider whether new or improved processes are needed to connect patients diagnosed via emergency surgery to the relevant cancer pathway.