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 8. Conclusions and recommendations

Extending the existing evidence base

Findings from this evaluation expand on the themes identified in the rapid evidence review, adding detailed insights on the experiences of cancer treatment and support for patients living in Scotland’s more deprived and rural and island areas.

The evaluation confirms travel is an important factor in experiences for patients in both rural and island and more deprived areas. Findings show how travel impacted on patient decision-making, as well as the financial and physical toll it could take, and emphasise that proximity to a health setting does not always mean easy access for patients. The evaluation also confirms that patients in more deprived areas tend to face greater financial challenges than patients in less deprived areas. These impacted on their ability to afford transport, heating, food and other essentials, all of which can have a negative impact on their cancer journey. Availability of financial support was limited. However, patients in this evaluation tended to prioritise cancer treatment over other issues in their decision-making around finances.

Across both rural and island and more deprived areas, the evaluation also found variable access to prehabilitation and a desire from patients for more support post treatment (particularly emotional support) – both of which would benefit from further work to explore potential solutions.

What factors hinder timely access to, and effective engagement with, cancer treatment services?

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.

Factors hindering patients’ access to and experience of cancer treatment and support services were wide ranging and spanned the three dimensions of the COM-B model of behaviour change^[8]. For example:

Capability

• Patients in more deprived areas tended to face greater barriers to accessing and understanding information related to their diagnosis. Use of medical terminology was a particular challenge to patient understanding.
• Patients in both areas felt overwhelmed by their diagnosis and the amount of information they received in initial consultations.
• Patients in both areas felt they did not receive enough information on potential side effects of treatment.
• Patients living in more deprived areas were more likely to have comorbidities that impacted their treatment options and experience of treatment. Reduced health literacy impacted their ability to seek help for managing side effects and symptoms.
• Patients with pre‑existing mental health conditions struggled with the emotional impact of their cancer journey and with the capability to attend appointments and access support.
• In both areas, access to video appointments was impacted by patients’ digital literacy and staff knowledge of how to use video platforms.
• In rural and island areas, some patients were not aware of entitlements to help with travel expenses or how to make a claim.
• Lack of awareness of ICJ among staff and patients was a barrier to accessing wider support.

Opportunity

• Patients living in rural and island areas had further to travel to access treatment and support services. There was limited flexibility to deliver care closer to patients.
• Public transport was not always available or reliable. Patients struggled to find parking spaces at hospitals. Limited capacity and strict eligibility criteria impacted access to patient transport.
• Patients in rural and island areas found it more difficult to travel to attend early morning appointments.
• Limited financial support was available to patients in both more deprived and rural and island areas experiencing financial pressures as a result of their diagnosis.
• Particular workforce challenges in rural areas impacted on waiting times for cancer treatment and access to allied health professionals. In both rural and more deprived areas, there were long waiting times for clinical psychology support.
• Lack of capacity for community blood testing delayed treatment for some patients.
• Perceived communication issues within and between health boards negatively impacted on patient experience. Staff experienced challenges keeping in touch with patients in temporary accommodation.
• Postal delays meant some patients in rural areas missed appointments.
• There was inconsistent use of video consultation technology across case study areas.
• Limited employer flexibility meant some patients returned to work sooner than they would have liked to.

Motivation

• Patients living in more deprived areas were, on the whole, less empowered to advocate for themselves throughout their journey and more likely to defer to the recommendation of the clinician, making shared decision-making on clinical treatment more challenging to implement.
• A perception that support from Macmillan, Maggie’s Centres or hospices was only for end-of-life care impacted take-up. Some patients in more deprived areas felt Maggie’s Centres were not for ‘people like them’.
• Some patients were reluctant to take up wider support because they felt that others were in greater need. Some patients found peer support groups too negative. Privacy concerns in rural and island areas were a barrier to take-up.
• Patients often prioritised clinical treatment over other forms of treatment and support such as prehabilitation.

What factors promote timely access to, and effective engagement with, cancer treatment services?

Factors that promote patients’ access to and experience of cancer treatment and support services were wide ranging and spanned the three dimensions of the COM-B model of behaviour change. For example:

Capability

• Patient understanding was strengthened when clinicians used clear, plain‑English explanations (often supported by diagrams) alongside written materials for patients to refer back to.
• CNSs or SPoC staff attending or following up after consultations, further helping patient understanding. Family and friends attending appointments also helped with recall and encouraging patients to ask questions.

Opportunity

• Having a single member of staff to build relationships with patients and consider their holistic needs supported access to, and engagement with, treatment.
• CNSs and SPoC staff proactively coordinated appointments to travel to reduce travel burden on patients.
• Where used, video consultation technology reduced the need for patients to travel for appointments. In some cases, to overcome digital barriers, video appointments were supported by CNSs or SPoC staff and access to local health settings.
• Where available, volunteer driver schemes helped patients travel to appointments. Designated parking spaces at some settings improved travel experience.
• A patient’s support network was crucial to providing practical support during their journey.
• Referral to organisations offering income maximisation services helped patients to access financial support.

Motivation

• Engagement and shared decision-making were strengthened where patients were able to build a relationship with a key staff member (often a CNS) who supported them throughout their journey.
• A patient’s support network was crucial to providing emotional support during their journey.
• Proactive referrals, as well as framing wider support as part of looking after oneself, repeating offers at different points, and providing individual appointments helped encourage take-up.
• Embedding prehabilitation within the cancer pathway reinforced its importance.

How can cancer services be further developed to ensure timely access to treatment and improved experience of services?

While it is not possible for all the barriers for these patient groups to be fully overcome (i.e. there will always be some travel involved for patients in rural and island areas and there will always be additional complexities for patients with comorbidities, which is more common in more deprived areas), the evaluation clearly points towards factors that can mitigate the impact of such barriers.

Several themes emerged as being particularly important in improving patient experiences. Firstly, a person-centred approach whereby a medical professional (usually 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 (e.g. struggles affording to heat their homes, getting to appointments and buying food to support their recovery).

These themes 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. For SPoC, this could include learning from models with proactive contact and clinical training for workers which had particularly supported the provision of person-centred care. For ICJ, this could include work to increase awareness of the services, change patients’ attitudes to accessing support, and ensuring that there are other services which ICJ can refer to given that financial grants and counselling services, for example, have been cut in recent years. There was also strong evidence to support funding a greater number of CNS roles across cancer pathways or clinically trained SPoC staff in recognition of the value they can add to patient experiences.

Notwithstanding this, 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. For example, improving public transport to resolve some of the challenges faced by patients in both more deprived and rural and island areas, improving appointment planning systems in health and social care so that patients in rural and island areas do not receive appointments at difficult times for them, and improving access to interpretation services and translated information. In addition, the evaluation was not able to reach any minority ethnic patients so further work would be needed to better understand their access and engagement with cancer treatment and support. The recommendations provided below serve as a starting point in considering where actions should be focused.

Recommendations

The following actions are recommended to improve experiences of accessing and engaging with cancer treatment and support for people living in rural and island and more deprived areas of Scotland. While the intention is for these recommendations to inform the next Cancer Action Plan, it is recognised that some of the recommendations go beyond the scope of the Plan and would require higher, system-level change. Nonetheless, they are included here as they are relevant to improving the experiences of patients with cancer in rural and island and more deprived areas of Scotland. Actions considered to be directionally 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.

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 Door¹¹ (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 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 medicine 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 Principle in Scotland’s Health & Social Care Service Renewal Framework and the Population Principle 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.