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 2. Service organisation and systems – evaluation findings

This chapter explores how healthcare systems promote or hinder timely access to, and effective engagement with, clinical cancer treatment services. It considers key themes and associated challenges and facilitators for people living in more deprived, and rural and island areas of Scotland.

Key findings

• Service organisation shaped access and experience of treatment. There was a perception that clinical treatment is concentrated in affluent urban tertiary settings, making it more challenging for patients in rural and 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 in 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. Reaching those without a fixed address was particularly difficult for staff.
• Communication between professionals was generally felt to work well but some patients reported communication issues which negatively impacted on their experience of treatment.

Service organisation and coordination

Where a patient received cancer treatment largely depended on health board boundaries (and associated service level agreements), as well as services available at individual sites. See case study areas – key characteristics for a high-level overview of clinical service organisation for each case study area.

For patients in rural and island areas, the location of treatment or support centres often meant traveling long distances involving multiple forms of transport and overnight stays. Patients in island areas, and in some rural areas, had treatment co-ordinated across health boards. ln more deprived areas, distances were comparatively much shorter, but travel was still an important aspect of patients’ experience, with patients often not having access to a car and traveling to multiple locations during their journey. The impact of travel on patient experience and decision-making is covered in more detail in Chapter 5.

Equitable access to treatment options

There was a staff perception that specialist treatment, support services and resources are concentrated in affluent urban areas, which are more difficult for patients in rural and island areas and more deprived areas to access. At the same time, patients in more deprived areas may have greater medical needs. Staff suggested that a national shift in approach to service organisation is needed with increased focus on delivering specialist care locally.

“You're delivering on a shoestring already. You're in a resource-poor sort of setting, delivering to patients who I think actually have more needs, more comorbidities, more mental health, more challenges, more whatever […] it's very hard for me or anybody in my team to overcome that inequity. We try on an individual basis, but we're drowning a little bit. I think, you know, we can't, we can't do it. And I think what needs to happen is from the top up, there needs to be a big, a big shift in how we're working and a kind of shove in saying, ‘Okay, we're going to focus on, on locally delivering care that's as excellent as the teaching hospital over here’.” - Staff, more deprived area

“I think the main thing for me [that would improve services] would be having acute oncology at all the hospitals because it does make a big difference to the psychological and the medical support that they [patients] need. And I think the hospitals that are in the most deprived areas don't have any of that support. They can contact an on-call person at the Beatson, but that's kind of it. So it's quite limited for the patient and it impacts their length of stay and outcomes and making sure that they're getting the appropriate treatment. And it becomes a postcode thing. It depends where you live, what quality of service get.” - Staff, more deprived area

Surgical robots were also mentioned as available in some case study areas but not others. Where they were available, staff had seen quicker recovery times and a reduction in critical care.

Staff reported that most clinical trials happen in tertiary centres and patients recruited would have to travel there for all their treatment, which is not always possible for patients living in rural and island areas.

As a result of a lack of local specialist care, patients had delayed seeking help for side effects or complications because they felt that travel to the site would be too challenging or because they would rather wait to be seen by someone with specialist oncology training than go to a local centre without specialist expertise. A staff concern raised was that the centralisation of services has meant that local hospitals lose the expertise to deal with emergency complications that patients may experience when they return from a tertiary centre.

“We don't have a dedicated cancer assessment unit so people will have to come through the front door and, depending on what time of day it is, they have to come through A&E and you sit in a busy, crowded A&E, and you may be seen by a member of the healthcare team who does not have the specialist oncology experience, although they've got somebody they can phone […] We do have occasional patients who say, ‘I'm not coming back up to [hospital] with my treatment side effects, because there is no way I'm sitting in A&E in the early hours of the morning and amongst all these drunk patients with the police.” - Staff, more deprived area

While staff and patients, particularly in rural and island areas, recognised the need for some centralisation of services, it was nevertheless felt that patient experience could be improved if services were available closer to home. Staff suggested this could be achieved through increased use of visiting specialists and more local scanning equipment. These kinds of changes had been made in some areas in recent years. In a more deprived area, work had recently been done to explore whether it was possible to run clinics from GP surgeries to discuss treatment options with patients and next steps.

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.

Staffing

Staffing was raised as a particular challenge in rural and island areas. Staff highlighted a lack of consultants in certain specialities as well as vacancies in senior management roles. There was a perception that clinical staff are drawn to work in larger settings in cities where there are more training and mentoring opportunities, or to move abroad for perceived better pay and conditions. A staff member’s suggestion to address this was to allow health boards to offer more tailored compensation packages.

“If you were an oncology trainee ready to take up a job and you could take a job in [a rural and island area] where you would be single handed with no support for the same money that you could go into department in [urban area] with 50 colleagues, you know which one you're going to pick. So definitely something about allowing incentivised recruitment or to do something different in that space to try and get people to come and work in the peripheries.” - Staff, rural and island area

In one rural and island area, staff said that a shortage of medical staff meant that patients with a new diagnosis were waiting longer to be seen and not always within target waiting times. New urgent cases were prioritised, which could increase anxiety for other people affected by cancer waiting for treatment.

Given that patients often had treatment coordinated between health boards, staffing pressures in one area would impact other health boards. For example, staff suggested that a decision not to replace nursing staff in another health board had added workload pressure to their staff and they were concerned that patients travelling across boards could become ‘lost in the system’ due to staff having reduced capacity to follow-up on these patients.

There was also a sense that service pressure across health boards had affected the ease of access to mutual aid for rural and island health boards.

“The mutual aid that you could have relied on in the past is now not particularly forthcoming. I think it's because every unit is stretched and stressed and has a waiting list and therefore, if you come to them with a small ask, it's too much" - Staff, rural and island area

Further, staff in both rural and island and more deprived areas also said that more resources would be needed to future proof services and manage increased incidence and more people living with cancer for longer.

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.

Staff and patients expressed a desire for flexibility in treatment location, taking account of ease of travel. In rural and island areas, the most accessible healthcare setting is not necessarily the same for all patients. Changes to service level agreements between health boards would be needed to support greater flexibility.

Increased local availability of services would need to be married with patient choice. Some patients had preferred to travel further for scans in order to be seen more quickly, particularly at the diagnostic stage, or for continuity of care with staff they had already seen. In rural and island areas, there was also a patient perception that there is a higher level of care in larger sites, or that being seen locally would delay access to help for complications. Staff did report explaining to patients that, where the same procedure was available, the level of the care is the same in smaller settings, and it may even be that they are seen by the same clinician.

Particular issues were raised with a lack of specialist palliative care facilities in rural and island areas and a lack of specialist palliative support for community-based staff, as well as a lack of nursing staff to carry out home visits. A lack of services means patients may not be able to die at home or in a hospice should they want to do so. Where patients are offered a hospice place this might be a few hours away from their home and therefore more difficult for their support network to visit them.

In terms of good practice, a staff member in a rural and island area described how they had helped introduce local MDT meetings for patients receiving palliative care after they became aware of this happening in another area. The meetings allowed them to better identify patients with significant issues or symptoms who need support.

Prehabilitation and rehabilitation

The Scottish Government intends for prehabilitation and rehabilitation to be part of a continuum of care. Prehabilitation aims to prepare patients for cancer treatment and may include support with exercise or physical activity, nutrition, mental wellbeing, and assistance with alcohol and tobacco reduction/avoidance. Prehabilitation can help people to recover more quickly from surgery, chemotherapy and radiotherapy, and reduce the chance of developing other problems during and after treatment. Staff noted that patients who had had emergency surgery were more likely to need intensive rehabilitation to support their recovery in order to have further treatment.

Approaches to prehabilitation and rehabilitation, and access to resources, varied across and within areas. In some areas there was a more structured approach whereas other areas seemed to rely more on individual staff to signpost to prehabilitation services. When rehabilitation was embedded into the cancer pathway this was felt to work particularly well. For example, in one more deprived area a staff member described how they have access to a dedicated multidisciplinary clinic to support patients and this is communicated as a key, routine part of their treatment plan. This was thought to be an effective approach to encourage take-up (explored further in Chapter 7). However, this clinic was funded through an endowment fund and only available in one setting.

Lack of a comprehensive offer of prehabilitation and rehabilitation for patients was particularly noted in rural and island areas. However, service provision was being reviewed in a number of areas, including with support from ICJ staff. Staff said funding was the key barrier and some services were no longer available due to funding cuts. Particular issues were noted with a reduction in exercise classes offered by or in partnership with local leisure centres.

“There's not great occupational therapy services, there's not great physio services, there's not great dietitian services. We really struggle with all of that. And I suppose that's the same with the prehab question as well. Even ongoing advice throughout treatment, if we refer a patient to a dietitian for massive weight loss, they don't get seen for the next two months. You know, it's like that. So there is a big lack of support professionals.” - Staff, rural and island area

Staff across case study areas commented on a lack of clinical psychology support with long waiting lists for services, up to 18 months in some cases. The impact of the cancer journey on mental health is explored further in Chapter 7.

Staff working in areas with a Maggie’s Centre would refer to their services and highlighted their pre- and post-treatment classes and clinical psychologists. However, there were concerns that patients in more deprived areas were less likely to attend because of a perception that Maggie’s was ‘not for them’ (see Chapter 7) or that this type of support would not be a priority if it involves a difficult public transport journey. Patients in rural and island areas were also felt to be less likely to make a long journey for prehabilitation and rehabilitation, particularly if they had already spent time away from home for treatment.

Other barriers to prehabilitation included a lack of consultant time to discuss this with patients in their appointments, perceived inability to manage prehabilitation alongside meeting treatment time targets, and limits on the appointment types volunteer drivers can be used for.

"I think it's [prehabilitation] probably not mentioned to all new patients because very few new patients [within the pathway] meet a clinical nurse specialist. So if you're a consultant having a conversation with somebody about a new diagnosis, their past medical history, their treatment, etc. All within the confines of potentially a half hour appointment to then go on to prehab at the end is a lot of information to give. So I think the lack of CNS support means that probably there's not as much signposting to things like prehab as there could be." - Staff, rural and island area

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.

Use of digital technology

In rural and island areas, staff and patients described the benefits of using Near Me video consultation technology, where appropriate, allowing patients to speak to consultants in a treatment centre without having to travel. These video calls tended to be for routine appointments rather than initial assessments or pre-surgery consultations, which were felt to be important to carry out in-person.

Where connectivity or digital literacy was a challenge, staff described measures to support patients to use video consultation technology options, including providing facilities at a local treatment centre, visiting patients at home to help them connect or encouraging patients to ask a family member to help. For treatment across health boards, video calls worked particularly well in allowing local nursing or SPoC staff to join appointments and answer patient questions afterwards or carry out tests requested by the consultant remotely. Relatives or friends, who lived far away, were also able to join calls to provide support or advocacy for the patient (see Chapter 5).

"It's terrific. It's almost like I'm sitting in the clinic with him [professor]. They've got this huge screen and one of the Macmillan nurses from [local area] meets me in the clinic and they take me into the room, they set it all up" - Patient, rural and island area

“When we did the Near Me clinic [before it stopped due to a lack of time on behalf of the consultant], that was brilliant because I used to do the patient's observations, check their bloods and I sat in on their consultation so I knew exactly what was going on. From a communication point of view, it was 100% effective.” - Staff, rural and island area

For staff in a rural area, the use of video calls for MDT discussions had also made it easier for staff to work together across health boards to deliver services.

“Now we've got a rotational model where other oncologists in Scotland are coming in. So [video consultation software] has been a massive advantage for these MDTs just in terms of allowing regional working in a way that just didn't work before and allowing the support from other units for some specialties that's appropriate. So the modern ways of working and technology has definitely come on leaps and bounds.” - Staff, rural and island area

Another perceived benefit of video consultations over phone consultations was giving staff the opportunity to see how patients were coping with treatment. There was a concern among staff that patients might underreport symptoms on a phone call, especially if they wanted to continue their treatment.

For patients with comorbidities, there was still a staff preference to meet face-to-face to see if patients were coping or could cope with treatment.

However, video consultations did not seem to be used or offered consistently across the case study areas. There was a perception among staff that some patients had to make considerable journeys for a short appointment, which would have been carried out remotely had they been on a different pathway. The video consultation system was described as cumbersome and more time consuming for consultants and patients to use than a phone call. Therefore, some consultants preferred not to use it.

In a rural area with relatively high use of video consultations, staff said that resource had not kept up with the increase in time needed to attend these calls with patients who need support, and more CNS or SPoC staff time would be needed to support increased use. Increased use of video consultations would also need to be balanced with patient convenience and preference. For patients who are working or have caring responsibilities, it may be easier to take a phone call than a video call. Staff in more deprived areas said there had not been much patient uptake of the offer of laptops and dongles to support digital appointments.

Some patients had been offered video appointments but preferred to travel to meet their consultant face-to-face, finding it was easier to read body language in person and tell if a clinician was being honest with them.

Some specific frustrations were raised by patients in rural areas who felt that it took longer for complications or side effects to be addressed because they were offered remote rather than face-to-face appointments.

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.

Communication between professionals

Patients were generally positive about their experience of communication between professionals during their journey.

"I just think what's impressed me most throughout is the communication between the different departments because there's been quite a lot in there and they've been very good with keeping me informed and keeping other departments informed. I think that's probably been the strongest point for me." - Patient, rural and island area

However, some patients reported what they saw as communication issues among staff or instances where a health professional did not appear to have comprehensive details of their treatment which had impacted their experience. Individual patients who had all their treatment in one health board reported the following issues:

• No-one being able to follow-up while a consultant was on holiday, resulting in a longer wait for scan results.
• Arriving for an appointment but staff not being able to find their details in the system and having to go a different department.
• Being told they could go to their closest hospital to have a pre-surgery blood test, only to be told when they arrived that that was not the case.
• Being asked at a treatment appointment if they had had chemotherapy (which they had not), leaving them feeling worried that staff did not have the correct information.
• Differing views between the oncology team and diabetes team on whether an insulin pump was allowed into the radiotherapy room.
• Receiving an appointment to see a psychiatrist two days after their operation, which meant they were not able to attend.

While it was not clear where issues arose, individual patients who had treatment across health boards reported the following challenges:

• A perceived miscommunication over whether or not a stent had been inserted and whether they had been prescribed medication to aid their digestion. The patient said not having these things in place made their operation and recovery more difficult.
• A&E staff not being aware of a card they had been given for ‘fast tracking’ care.
• Feeling that they kept having to explain their situation to staff as information was not shared between health boards. Their GP was not able to access information about cancer treatment which limited their ability to prescribe medication for another issue.
• A patient staying in patient accommodation being asked by an allied health professional when they were having treatment so they could come back for another appointment. They had already had their treatment and were going home soon.
• Being sent to A&E due to stress and feeling that there was no communication between A&E staff and oncology staff to identify that they needed more support to deal with their diagnosis.

Similar to patients’ generally positive perception of communication, staff also said that there was generally good communication between professionals. However, the different systems in use means it takes time for staff in one health board to access the outcome of MDT discussions in another health board. During this time, they cannot provide much information to patients who are anxious about results.

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.

Interpreter services

Staff in more deprived areas described how patients with English as a second language can struggle to navigate the healthcare system and that staff can find it more challenging to support patients. Issues were raised with access to interpreters at short notice and leaflets not always being available in languages needed.

In one area, staff said interpreter services had moved from in-person to telephone provision which they felt had reduced the quality of the service. Another issue raised was that, if a patient misses an appointment, a letter is sent to them in English which they may not understand and this may lead to a further delay in treatment. In another area, staff highlighted that interpreter services were not readily available for patients who needed to initiate contact with staff.

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 with patients.

Appointment details

The process of receiving appointment details generally supported engagement. Patients were generally happy with how they received appointment details, which was by letter, phone call, text, email or in-person (or a combination). Appointment reminders were helpful for patients whose memory had been affected by treatment. However, some patients in rural and island areas said they had missed appointments because letters had not arrived in time. Patients in both rural and islands and more deprived areas had chased what they perceived as late appointment details, which could be difficult when not feeling well.

"It was done a bit short notice. They [the secretary] rang on the Wednesday and said ‘we want you to go in like the following Tuesday’ kind of thing. So they said, ‘I'll put all the details in the post’ and it actually arrived the day I went to [the hospital]. So I had to ring her on the Monday and say, can you tell me the ward and the time and everything? Because the letter hadn't come. If they give you like enough notice and whatever then fine, but if it's only like within a few days, then the post is not always the best.” - Patient, more deprived area

Participants who were working during treatment, and particularly those who were self-employed, said they would have appreciated more advance notice of appointments to help them plan their schedule.

Some patients struggled to access appointment details sent digitally. Third sector staff described helping these patients, for example if they did not have a smart phone, or could not manage to open links within the message. In another area, a patient described how she had missed some appointment details as she had not realised that she needed to scroll further down in the text message. This meant she had not been able to mentally prepare for the appointment which was more invasive than she expected.

Staff in a more deprived area gave an example which illustrated the impact of not being able to reach patients. A patient who had been discharged from a service because the service could not get in touch with him. The patient did not answer their phone in the mornings as they were sleeping and did not have credit on their phone to make an outgoing call.

Staff raised specific issues in relation to keeping in contact with patients living in temporary accommodation and Gypsy/Travellers who may frequently move address and have no or limited phone access.

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.

Appointment coordination

Staff across case study areas tried to minimise the travel burden on patients by, for example, arranging for CT scans to be carried out on the same day and location as chemotherapy, moving scans to a more convenient facility, or changing appointment times to be more convenient for school drop off or travel time (see Chapter 5). However, there were system-level challenges. An example was raised with a patient in a rural and island area having an appointment location changed at short notice which meant they could not attend. As this was a second missed appointment, they received a letter informing them that their treatment would be stopped if they continued to not attend. This issue was later resolved.

Organisation of primary care services also affected access to treatment. In a more deprived area, particular issues were raised with patients not being able to easily access blood tests in the community. For example, in one area, blood tests had moved from GP practices to community hubs since COVID-19, and a lack of capacity at the hubs meant patients did not always have their bloods done in time, leading to treatment delays. These hubs also meant patients had to travel further than they would have done previously.

"Prior to Covid, the majority of patients would have attended their GP practice to have their bloods done locally. Post Covid, the majority of GP practices put that particular part of the blood testing out to community hubs. But again, community hubs are centralised, they're not local, so patients are still having to engage in bus travel from home to get to somewhere where they do the blood testing […]. We often find that the resource is just not there for the patients. So, often patients won't have their bloods done in time, and that's not through any fault of their own, other than they just can't get an appointment.” - Staff, more deprived area

Prescription collection

Prescription collection also presented some challenges for patients. Patients having treatment across health boards reported extra effort in accessing their prescription. They had to liaise between their local GP, pharmacy and the health board where they received treatment in order to arrange the prescription, which took time.

"[Antibiotics] were all prescribed by [health board] and on one occasion I ran out of the morphine and we'd phoned the GP and they advised us to phone [the health board] and they had to send it down and then it had to be sent to a pharmacy so there was a delay in accessing medication. I normally try to tie into my visits though so when I was up there, I would get the prescription there.” - Patient, more deprived area

Staff in more deprived areas described how prescriptions might be issued on different days, requiring patients to make multiple trips to collect them which they said was difficult for patients who struggled financially.

Prescription home deliveries could help with reducing some patient journeys, but this was not available in all areas. In a more deprived area, initiatives to deliver anti-cancer medication to a local pharmacy or health centre or patients at home, rather than requiring them to come into hospital, had been successful in reducing journeys. There was a call by staff for home delivery to be made available in rural and island areas. Continuation and extension of these initiatives to other areas would rely on funding, increased numbers of pharmacy staff and medicine storage space.