Cancer Prehabilitation: Staff perspectives on implementation

Key Findings – Themes

Six interlinked themes were identified across focus groups:

1. The role, framing and messaging around prehabilitation

2. Strategic commitment and coordination at senior leadership levels

3. Referrals onto, and touchpoints along, the pathway

4. Collaboration – awareness, trust and working across organisations

5. Reducing barriers and promoting equity of access

6. Planning and resourcing in services

1. The role, framing and messaging around prehabilitation

Prehabilitation was seen by participants as multi-modal and tiered, including physical activity, nutrition and psychological support with the role of getting patients into the best possible position for their treatment. It was also seen to extend to practical support, such as transport, to improve people’s ability to be able to engage with interventions. It was emphasised that prehabilitation should not only be for patients undergoing treatment with curative intent, but for those receiving non‑surgical, palliative or best supportive care as well given the evidence of benefits to these groups.

“We have been saying about this idea of how we support people to get the best out of whatever treatment they’re looking at. I’m not always looking at either curative, surgical intent. It can absolutely be in palliation, you know, we can have people who are in palliative treatment now for years. And actually that importance of optimising both their health and wellbeing, and I do wonder if we need to be a bit more broad-minded in terms of it not always being a medicalised model and approach to this.” (Third sector staff)

Participants described that prehabilitation is often viewed as an ‘add on’ and the need for a culture change at organisational level to frame prehabilitation as a core part of treatment, similar to routine tests rather than an optional extra. Across focus groups staff felt there is a need for consistent interest and messaging from professionals – particularly those with influence, to reinforce a whole team approach to what prehabilitation is and why it matters.

“One of the things we’ve been talking about is the consistent messaging across the board, and who do the patients listen to the most. So, is it, can it add more value coming from your Clinical Nurse Specialist (CNS), or your consultant to say, you know, you need to look after your wellbeing. You need to look after your nutrition, you maybe need to think about the physical activity side of things. So that there’s that same consistent message all the way through.” (Leisure staff)

The need for a whole team approach across different professional groups on messaging about prehabilitation was highlighted. It was also described in examples of clear and confident signposting to prehabilitation activities delivered by third sector organisations.

“It’s about a team approach. You know I think absolutely consultants need to come on board. There is something different about CNS saying to people and actually a whole kind of team approach. So that every time they get spoken at the beginning that everybody’s singing from the same hymn sheet as well. I think there’s benefit to that and value given to the patients.” (Nurse)

“I would say in terms of my NHS colleagues, there’s varying levels of buy in… There’s some people who are huge champions of prehab and we see that through our referrals.” (Third sector staff)

Ten participants emphasised the importance of increased public awareness of what prehabilitation is, so that patients know what it is and why it is important before diagnosis, which can be a psychologically challenging time. In particular participants emphasised the need to introduce the term in a simple and jargon-free way. One mentioned that consistency in messaging about prehabilitation should extend beyond the health sector, to include areas such as housing.

To support an understanding of prehabilitation, some participants proposed alternative terms to prehab. One participant suggested reframing prehab as “all‑hab” to convey that prehabilitation activities are relevant beyond pre‑surgical patients, and to better reflect the often ongoing nature of treatment and support across a continuum from prehab to rehab. Another participant proposed using “prehab” to describe universal interventions, and “prehab plus” for specialist interventions, to better capture the tiered nature of provision and provide clarity around leadership and responsibility for delivery. These suggestions highlight the importance of language to support consistent public and staff understanding.

2. Strategic commitment and coordination at senior leadership levels

Participants reflected that often prehabilitation activities in Scotland are defined by projects rather than pathways, meaning that little in the way of staffing or funding is sustained. They emphasised that it is not about re-inventing the wheel but potentially learning from other models of prehabilitation in the United Kingdom (UK), such as the Prehab4Cancer model in Greater Manchester^[17], which has a unified approach that covers a large geographical area. They noted the need to understand under- and over-capacity of local services at more senior levels of leadership or management, and for these to be regionally coordinated to ensure people can access services close to home, including across NHS Board boundaries.

“The way prehab works at the moment is very patchy, so there are some services that have managed to if you like persuade their Health Boards to fund something and they’ve got something in place.” (Surgeon)

Given the current challenging financial climate, three participants said prehabilitation is seen as a ‘nice to have’ by NHS Boards. One described feeling disheartened when compelling evidence of the benefits of prehabilitation were not being acknowledged. Another felt that NHS Boards need an incentive or something that would ‘turn heads’, such as a strong cost‑benefit analysis. One suggested that they would likely need crossover funding, to continue to deliver prehabilitation while achieving the direction of resources for savings in rehabilitation.

“I do not feel the Board is committed to that because they’re not supporting us to deliver prehab at the level we need to and I think it’s tokenistic. We get nods, we get pats on the back but we don’t get any action. There’s no commitment to see prehab as part of the cancer journey, as an add-on, and that’s how it seems. So something needs to change at higher people that make the decisions and allocate the resources.” (Allied health professional)

Related to evidence of the benefits of prehabilitation, all seven focus groups discussed outcome measures in prehabilitation. Across focus groups, measuring the benefits of prehabilitation was described as challenging, given the resource required not only to manage the data but also to analyse and isolate the specific impact of prehabilitation among other influencing factors.

“So what they’re asking for [in the prehabilitation service] is the impact on length of stay. But how do you possibly tease that out from a Dietetic and Speech and Language perspective? You know it’s so hard to prove in patients having such complex cancer surgery, with all the complications they face at any time, because of anything.” (Allied health professional)

Participants discussed a variety of outcome measures relevant to cancer prehabilitation from service measures of length of stay or waiting times, to clinical measures such as survival and recurrence rates, to patient-reported outcome measures, mental health scoring, and quality of life indicators. Qualitative data, such as patient stories, were also viewed as valuable to evaluate experiences and evidence the benefits of prehabilitation.

Two participants suggested a prehabilitation‑related metric within the Quality Performance Indicators (QPIs) to help drive interest and action in prehabilitation.

“I think prehab needs to be listed on as a QPI for all the MDTs because unless it’s mandatory, it’s not going to happen.” (Consultant Physician)

However, participants acknowledged challenges in identifying the most appropriate metric for prehabilitation. For example, issues with measuring the proportion of people who have gone through a prehabilitation pathway or service. A lack of appropriate information technology (IT) infrastructure and difficulties locating baseline data were also identified as the key measurement challenges. Despite this, it was felt that standardised measures for prehabilitation could support consistent data collection and evidencing of benefits, which highlights the need for support from senior leaders to invest in infrastructure for recording information, and strengthen commitment to measurement.

3. Referrals onto, and touchpoints along, the pathway

There were varying views on the optimal time to introduce and refer patients to cancer prehabilitation. Many felt it should begin as early as possible, even before a confirmed diagnosis, to maximise the available ‘window’. Others cautioned against raising prehabilitation too early (for example, at GP referral stage) due to the risk of increasing patient anxiety. Striking a balance between timely interventions, and managing patients’ wellbeing given the psychological impact of a cancer diagnosis, was seen as key.

Informed choice on the pathway was emphasised in two ways:

First, that patients should be given clear, accessible information that helps them understand why prehabilitation matters that is not overly medicalised. Participants mentioned the Prehab and me^[10] website, and described signposting to this resource and other cancer support agencies within their own online or leaflet materials. Some felt that more proactive outreach activities would be beneficial, such as educational videos about prehabilitation on TV screens within waiting rooms. One raised the importance of a balance of information for patients, noting that holistic assessment and personalised care have long been a part of cancer care, before these were formally recognised within cancer prehabilitation, and that we should not lose sight of the patient when providing information and promoting engagement.

Second, participants emphasised that patients should be offered a choice of prehabilitation activities to suit their preferences. Participants stressed the importance of flexible services that take account of differing degrees of health, immunocompromise, work commitments, preferences for online versus in‑person sessions, one‑to‑one or group formats, and cancer‑specific versus generic groups, peer support or professional/volunteer led, to ensure care is accessible and personalised. One described the ideal prehabilitation pathway as ‘menu like’.

“So trying to make sure we’re quite fluid and we’re not bombarding patients with things, but they can access at any point, and in my view some sort of digital platform or similar is probably the only way to do that because then patient can access it as and when they choose.” (Service lead/ manager)

Several participants noted that simply explaining the benefits of prehabilitation is often not enough to motivate patients to engage in prehabilitation, particularly at the point of cancer diagnosis. They described that prehabilitation could be seen as ‘an additional ask’ during an already overwhelming time, and that patients require a certain level of internal motivation to participate in prehabilitation. This is related to the concept of health literacy discussed below in Reducing barriers and promoting equity of access.

“It's such a big trauma to be diagnosed with cancer. And sometimes [patients’] ability to understand they can do something about their diagnosis is sometimes secondary for them. They think about survival, you know, but they don’t [think] I can be physically active. I can change my life and habits. So, people ignore this and thinking they want to start the treatment.” (Leisure staff)

Four participants felt that those who take up services tend to be people already inclined to undertake these activities, whereas the focus should be on supporting those who need ‘a further push of encouragement’.

“So much of prehab is behaviour change. People don’t come into their cancer treatment completely motivated and wanting to run a marathon, many of them aren’t fit, and it’s not something that they’ve done before. So there’s a lot wrapped up with that within their treatment and how they approach treatment.” (Nurse)

To reach patients at other stages in the pathway, when they may be more ready to engage with prehabilitation, multiple touchpoints along the pathway was suggested. Another suggestion was to upskill staff using existing NHS Education for Scotland (NES) behaviour‑change training delivered by the Psychology team to promote patient engagement.

4. Collaboration – awareness, trust and working across organisations

Participants described challenges relating to cross-sector collaboration that are not unique to cancer prehabilitation – of not knowing what other organisations are delivering, working in siloes, and competition between some organisations. The pandemic was mentioned by two participants, who felt that it had left them less aware of what is available locally or had experienced re-prioritised services in COVID recovery to reduce the availability to prehabilitation.

Participants outlined examples of effective cross‑sector collaboration locally, often highlighting individuals who have proactively built connections between organisations and share learning, for example, through information sessions and teaching opportunities:

“We’ve got a really good driving force in [consultant name], who’s now sort of the prehab lead for this area. And he is really connected [names of third sector organisations] and really sees the value in it. So we have all come together whether to provide information sessions with different groups within the NHS, but also from a teaching perspective, went to speak to [name of university] students about the role of the third sector, prehabilitation, etc.” (Third sector staff)

A service lead drew out the need to gather intelligence about what is offered and by whom across organisations, to coordinate this from a patient perspective:

“But when I started I found out there was lots of services and lots of willingness to provide support to patients. But I didn’t understand how everybody was connected. I had to start at the beginning and almost have a big session really with [lists partners] to really try, and then unpack a little bit what the offering was and get a bit of clarity and sense for myself. Well, how do we ensure we’re getting the right things for the patient in a big long pathway which is littered with information, and all valuable.” (Service lead/ manager)

Participants who were NHS staff described a willingness to integrate with the third sector and local authority sector, and third sector and local authority sector staff described being prepared and making improvements where possible to increase referrals. Poor cross-sector relationships were felt to be due to low trust in the skills and governance of non-NHS organisations or non-NHS organisations not being seen or treated as an equal partner in service delivery.

“People can think the third sector isn’t professional… we’re qualified professionals as well.” (Third sector staff)

“We were kind of last to be included. It was almost like an afterthought… But we can be a massive part in this because we do it with other health conditions as well.” (Leisure staff)

Things that were identified as facilitators of cross-sector working were: bringing organisations together to clarify roles and responsibilities at each stage of the prehabilitation pathway, improving how data is shared between organisations, for example, through simple referral forms with appropriate information governance, and having key information about local services available in one place to improve staff awareness and support signposting. Cancer Card Support Directory^[18] was given an example of a helpful, searchable directory of cancer support services. In addition, appropriate training for prehabilitation-specific roles was felt to be an important pre-requisite for trust between staff.

“I think statutory services need to let go of some of the power that we hold everything. I think we need to have trust in our third sectors, but that trust comes with having assured and certain governance and training and consistency. Because we won’t transfer people in our care onto the services if we don’t understand their level of training and level of governance.” (Allied health professional)

Digital advancements in developing patient portals, similar to Badger Notes care records^[19] in maternity care, was raised by two participants as a potential future route to enable patients and staff across different clinical or non-clinical teams to view and record updates, and support more effective collaboration.

“Ideally some sort of digital platform, the patient can access as well. So they can see what’s being discussed and what options are open to them. Because obviously prehab has a clinical component to it, but some of the other stuff, there’s not really the time to say, ‘ok well you’re ready to talk to someone about this, or consider financial support, or whatever, because it will just vary from person to person.” ( Service lead/ manager)

5. Reducing barriers and promoting equity of access

In every focus group, participants brought conversations back to the patient and equity of access to cancer prehabilitation. Participants highlighted patient barriers to prehabilitation advice or support, of which some were inter-related. These were:

• Digital poverty
• Ability to use technology
• Distance / rurality
• Transport
• Time constraints of patients who are working
• Affordability
• Language
• Healthy literacy

In five out of seven focus groups, challenges concerning access to digital resources was raised. Discussion related to digital poverty or patients’ ability to use technology, with participants highlighting the importance of hybrid options to support those with lower digital literacy, or signposting to services to improve digital skills.

“There was a huge move to digitise and everything, but we find that the majority of our patients, because of the age profile, do not want to be using QR codes and different things, and I know I’m generalising here.” (Nurse)

Participants highlighted that some patients have long or complex travel for prehabilitation activities, and spoke about how local community settings, online options and practical support with transport could promote equity of access.

“We’ve got these huge geographical areas, so if you’re able to deliver local prehab in local health centres, sports centres, places like that, so patients aren’t having to travel to the cancer centre, which is, potentially up to 100 miles from where people live.” (Allied health professional)

They emphasised the need for more clarity to identify when it is appropriate for patients to travel to appointments, and when it is appropriate to provide support closer to home.

“And I think that whatever is in place, I think I would plea working in the [NHS Board] to work out what needs to be delivered face to face and what doesn't and what options for people that you know that are 100 miles away from a base hospital. You know that may be that they have to travel to get the specialist physio that's on offer but where they don't have to, what can be put in place for them?” (Surgeon)

Time constraints due to patients’ work commitments was also raised as a barrier to access, highlighting the need for support being available outside of regular working hours.

“We often hear from men who have an interest in accessing support services. But those sessions are at times where they're working. There aren't many available evenings and weekends. So I think the ideal service we see are those that sort of take those aspects into account.” (Third sector staff)

Participants raised affordability barriers for patients engaging with prehabilitation. One participant explained that heightened financial concerns, particularly when patients are unable to work, can influence whether prehabilitation is prioritised. This was described as the ‘financial toxicity’ of a cancer diagnosis.

“If people pay for, even if it’s £10 a month, some of the areas locally will only charge £10 a month, which doesn’t seem much to people that have got finance, but for people that have really struggled and maybe it’s not quite easy like maybe off work and in statutory sick pay getting very little. It’s definitely a fact on getting to and from.” (Nurse)

Language barriers were highlighted by one participant, who emphasised the need for translation of information resources, including the Prehab and me^[10] website, for patients where English is not their first language, as well as versions in British Sign Language.

“The videos all have subtitles but again it’s all in English.” (Third sector staff)

On a wider point around information resources, one focus group raised ‘health literacy’ as a barrier to access.

“There's something about that basic education of what? Why are we telling you this? Why are we encouraging you to go to this? Because everyone's got a different health literacy level. So I think that's really important that we break down those barriers to access.” (Academic)

The ability to understand and act on health information is also discussed under ‘Referrals onto, and touchpoints along, the pathway’ above. This highlights the intersection between barriers of access and patient engagement in prehabilitation at diagnosis. It also highlights the need to reduce barriers of access to prevent the widening of inequalities which may already exist.

6. Planning and resourcing in services

Resourcing for prehabilitation was raised in a number of ways in focus groups, which is considered below in relation to different professional roles and capacity through the following sub-themes:

Specialist allied health professional capacity

Participants described the importance of cancer-specific allied health professionals in delivering specialist prehabilitation advice and support. In particular, their contribution to care for patients with more aggressive, less survivable cancers was noted. Participants acknowledged how pressurised NHS services were, and described feeling frustrated when they were unable to refer to local specialist dietetic or psychological support once needs were identified. One participant described how the impact of resourcing lead them to feel uncomfortable when having to give advice outside of their own training:

“A big thing for me is not telling the patients the wrong thing, so I’m just really saying to patients, if you can walk around the block or they’re out exercising every day, but it’s not knowing whether that’s the right thing to tell them, or could there be something better than that?” (Nurse)

The resourcing of community services was seen to impact on timely prehabilitation. One participant described using their own contacts in community services to fast-track access for patients to timely prehabilitation. As reflected in the quote below, they questioned the sustainability of this practice at population level.

“Generally I think it’s the specialist sector that needs the most attention… I think unless there’s a truckload of money going to get dumped at the doors of those services, I don’t think it’s a quick fix unfortunately. I think [this] is why it’s so difficult because it kind of gets avoided because there is just not the personnel to be able to deliver it.” (Allied health professional)

Four participants described ‘working with what we’ve got access to’ based on patient needs. They gave practical examples of how they are doing this, such as offering online sessions to reach more patients, and ‘bolting on’ extra hours for prehabilitation within their existing role rather than securing additional Whole Time Equivalents for prehabilitation.

The central role of clinical nurse specialists

Across focus groups, clinical nurse specialists (CNS) were viewed as crucial to the prehabilitation pathway, given their close knowledge of patients’ needs and the kind of prehabilitation patients would benefit from. One participant described the CNS as the driving force for a well utilised local Maggie’s centre. Two participants noted that CNS are at the risk of overwhelm with the additional administration associated the prehabilitation, in particular, given current capacity challenges and potential impacts of the reduced working week.

“I would love to be able to implement screening and things, just maybe piloting, say, but with the reduced working work coming in, no additional resources and I’m really conscious about making sure that we keep the staff well and be very cautious we’re not adding to the workload.” (Nurse)

The role of the non-clinical workforce

Five participants reflected on their experience that navigators within Single Point of Contact initiatives (SPOC) or healthcare support workers provide support along the prehabilitation pathway. In some NHS Boards, these roles are permanently funded. They were seen to help reduce some of the administrative burden on CNS, and allow them to focus on clinical responsibilities. In particular, through support with screening and onward referrals. One participant observed that the SPOC navigator in their area has made referrals to Maggie’s universal prehabilitation easier, with plans for wider roll out across tumour groups due to this improvement.

“We're lucky in [Board] We've got Single Point of Contact and they deal with all cancer groups, so. So for our prehab, we were able to facilitate it through them, so that they're Band 4 healthcare support type worker roles. So it even takes emphasis, initial emphasis away from the CNS…it makes it much more sustainable as well because those posts are funded permanently.” (Service lead/manager)

However, it was noted that staff in these roles should have sufficient clinical knowledge and skills to effectively manage patient touch points and data. It was also noted that while beneficial, the role of SPOC should be defined clearly.

“We have a SPOC [patient navigator] who worked specifically for [cancer types], her impact is huge. She’s really, really beneficial. And she’s doing a lot of screening for frailty and things like that. But ultimately that could be transformed into work specifically for the detection of prehab needs.” (Allied health professional)

Elsewhere, participants gave examples of the beneficial role of the non-clinical workforce in the pathway, and provided ideas for more formal involvement, which are outlined in ‘Key Findings – Staff views on future areas of focus’. The key role of the third and independent sectors as providers of universal prehabilitation was emphasised by staff, with emotional support and assistance with transport seen as well placed here also. Support for physical activity was seen as spanning both NHS services and local authority leisure provision. Specialist nutritional and psychological support was viewed as the responsibility of the NHS.

“I think for emotional support, particularly that generally falls to the third sector… it’s great to get them in early for prehab because they get the whole awareness of the entire service offer from the very beginning and for their partners, who often feel incredibly helpless at that point.” (Third sector staff)

Data for planning and resourcing

There was evidence of a paradox of both under-utilisation and over-stretch, both across and within prehabilitation pathways. For example, one participant working in universal prehabilitation described higher referral rates from one cancer type team than others. It was frequently raised in focus groups that knowledge of where there is capacity in the system should be made known in order to be utilised.

“We’re used to everything being oversubscribed. So if there are places where it’s undersubscribed we need to know about that. We need to communicate to the clinical teams that that capacity is there and then we can feed into them if there’s already existing services that are not being used. (Consultant oncologist)

In one focus group, two participants described screening and population data for more effective and up-to-date prehabilitation workforce planning.

“I’m part-time… which you know, when I started doing this job, wasn’t far off the mark, but you know, people survive longer. They have multiple treatment lines. The numbers are much bigger than they’ve ever been. So, being able to then provide that level with prehabilitation, there would have to be more money for that.” (Allied health professional)

Both participants felt that having minimum staffing levels for prehabilitation would help determine what resource would be needed in terms of staffing and space. This was particularly emphasised with reference to cancers that require specialist types of prehabilitation rather than a universal approach.

“I almost wonder if we need [to] set numbers. So, for example, you have a population of 50,000 people, for that population size you need X dieticians, X physios, X whatever to deliver an adequately staffed prehab service.” (Allied health professional)

Some participants felt that there is currently insufficient resource to meet demand for specialist prehabilitation once need has been identified. Others described prehabilitation activities or dedicated roles being discontinued due to short-term funding coming to an end. These challenges highlight the potential value of prehabilitation screening data to inform workforce planning and strategic needs assessment, ensuring that resourcing is driven by need rather than by determining what support is available.