Out of hours palliative care in a rural area in the Midlands, England: a qualitative study of carers, caring for family members at the end of life and professionals

Out of hours palliative care in a rural area in the Midlands, England: a qualitative study of carers, caring for family members at the end of life and professionals | Research Square window.SnipcartSettings = { analytics: { enabled: false } }; (function() { var accessVector = localStorage.getItem('access_vector') || ''; window.dataLayer = window.dataLayer || []; if (accessVector) { window.dataLayer.push({ user: { profile: { profileInfo: { snid: accessVector } } } }); } })(); (function(w,d,s,l,i){w[l]=w[l]||[];w[l].push({'gtm.start':new Date().getTime(),event:'gtm.js'});var f=d.getElementsByTagName(s)[0],j=d.createElement(s),dl=l!='dataLayer'?'&l='+l:'';j.async=true;j.src='https://www.googletagmanager.com/gtm.js?id='+i+dl;f.parentNode.insertBefore(j,f);})(window,document,'script','dataLayer','GTM-K279D39R'); Browse Preprints In Review Journals COVID-19 Preprints AJE Video Bytes Research Tools Research Promotion AJE Professional Editing AJE Rubriq About Preprint Platform In Review Editorial Policies Our Team Advisory Board Help Center Sign In Submit a Preprint Cite Share Download PDF Research Article Out of hours palliative care in a rural area in the Midlands, England: a qualitative study of carers, caring for family members at the end of life and professionals Kerry Jones, Ben Hughes This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-7934424/v1 This work is licensed under a CC BY 4.0 License Status: Posted Version 1 posted You are reading this latest preprint version Abstract Introduction Demand for community-based palliative care has increased alongside prevalences of multi-morbidities, long-term life limiting illnesses, and an ageing population. Evidence suggests most people would like to die at home, and policies and frameworks in England have focused on the development of local services and supporting the provision of end-of-life care at home. Nevertheless, provision of out-of-hours palliative services remains patchy, which is exacerbated by the co-ordination of care services and inequity of care provision for patients in rural areas. However, a gap still exists to understand the effectiveness of these services and how they can be better utilised to support the population. Aim This study reviewed an out-of-hours nurse-led roaming car service, which was run and delivered by a hospice to support palliative care patients and their carers’. As part of this, the study identified what currently works when delivering the service and the challenges faced to provide the service. Method This was a qualitative retrospective study to collect data from both carers and health professionals who delivered the service. Carers were interviewed individually using semi-structured interviews and the health professionals were invited to join a focus group. All data was collected online via Skype and data were analysed thematically. Results From the focus group with health professionals, three themes identified were: challenges in communication; opportunities to improve service delivery and identifying what currently works; and service delivery and opportunities to work smarter. Interviews with carers did not reveal clear areas for service development but were useful to identify how contact began with the roaming car service, when intervention from the service was beneficial, and the support and reassurance the service provided. Conclusion The out-of-hours service provides an important contribution to the care and support for patients and their carers’ in rural areas during the end-of-life phase. There is a clear commitment from the service to meet both policy and the needs of patients and their carers’ as part of the delivery of a high level of care. Key challenges for service delivery were also identified to continue to address patient needs in rural areas. palliative care rural population out of hours hospice carers health professionals Background Demand for palliative care in the community has coincided with increases in the prevalence of multi-morbidities, chronic life limiting illness and an ageing society ( 1 , 2 , 3 , 4 , 5 ) which has been exacerbated by the Covid-19 pandemic ( 6 , 7 , 8 ). With evidence demonstrating that most people would prefer to be cared for to die at home ( 8 , 9 ) provided they can access round the clock community- based palliative care ( 10 ), is widely advocated by palliative care frameworks globally ( 11 ). Since the first national strategy for end-of-life care in England published by the Department of Health ( 12 ), end-of-life care policy has increasingly focused on localised action to ensure greater equity in access to palliative care ( 13 ). The current key policy for end-of-life care at home is the Ambitions for palliative care and end of life care: a national framework for local action 2021–2026 ( 13 ). It sets out six key ambitions for the provision of high-quality care such as personalised care; access to end-of-life care; comfort and well-being; co-ordination; staff capability; community support. Each ambition is built on a set of common foundations such as personalised care planning; shared records and information; evidence and information, 24/7 access; co-design and leadership. The Health and Care Act 2022 further supported integration between the range of services which are involved in end-of-life care at home. It also mandated Integrated Care Board’s specifically to commission end-of-life care to meet the reasonable needs of the population via outreach and domiciliary services ( 14 ). A key contribution of outreach services has been the development of out of hours provision of end-of-life care at home ( 15 , 16 ) where patients and families receive palliative care provided out of working hours in the evenings, nights, weekends and 365 days of the year ( 17 ). Enabling patients and their families to receive palliative care that is responsive to their needs, and which is delivered by skilled professionals ( 18 ) can increase the possibility of dying at home and reduce symptom distress ( 19 ). Intended as a rapid response out-of-hours service, the provision of such support includes personal care, symptom management, psychosocial care such as helping to manage anxiety ( 14 , 20 ). While recent legislation has mandated that all Integrated Care Boards ensure palliative care is available to enable people to die at home well, few boards, have developed adequate strategic plans to realise these aims ( 21 ). Moreover, access to palliative care out of hours is variable ( 22 ), in terms of quality and accessibility ( 23 ) with many patients in receipt of out of hours care being individuals diagnosed with cancer ( 5 , 24 ). Yet, many deaths which occur annually in England and Wales are caused by non-cancer conditions ( 23 , 25 ). Accessing such care can also prove problematic due to late referrals to out of hours services, a lack of co-ordinated communication between various health care providers and, inequity experienced by terminally ill patients in rural areas, those from socio- economically disadvantaged backgrounds and among patients from ethnically diverse communities ( 5 , 26 , 27 , 28 , 29 , 30 ). This points to a level of unmet need including those reported by carers who are caring for family members at the end-of-life. The factors which contribute to unmet need include poor communication between services, individuals and families, fear by staff that a new service will diminish their role ( 20 ), community health services being spread thinly and staff lacking knowledge and skills ( 31 ). Indeed, a survey conducted with carers in 2020 ( 32 ) revealed that 67 percent of respondents reported they were unable to say goodbye to a loved one in the way they would have liked, while 23 percent said they were not involved in decision concerning the care of the dying person. Moreover, many carers (51 percent) reported high levels of overall vulnerability and grief ( 23 ). While there is no one model of end-of-life care that is considered to deliver higher quality care than another, there is evidence to suggest that health professionals such as district nurses are perceived favourably by families and colleagues ( 6 , 33 ). However, there remains a dearth of accounts as to the effectiveness of out of hours services in the UK. A major challenge has been the lack of routinely collected data about hospice services and in the way they work ( 6 ). Further, there has been relatively little research pertaining to those in receipt of specialist care and frontline professionals who provide it. The study The qualitative retrospective study reported here was based on a review of an out-of-hours nurse-led roaming car service developed for palliative care patients and their carers by a hospice in a rural area of the north-east of England. The service was established to extend the services provided by the hospice in a rural area where there was very little access to rapid palliative care during the night. The paper contributes to an understanding of the service; it’s contribution to out of hours care including the challenges in delivering provision of palliative care based on the perspectives of front-line staff and family members. The service itself supports patients and their carers who need access to urgent care particularly overnight to manage symptoms including pain, breathlessness, restlessness and anxiety. Carers are supported to cope, particularly with the stress and anxiety associated with end-of-life care. The service works collaboratively with GP’s, community services as well as other night-time service providers such as 111 and district nurses to ensure that families receive help as quickly as possible. The service consists of 2 registered nurses (to cover 5 nights a week) and 2 health care assistants (to cover 6 nights a week) who deliver the roaming service between the hours of 8 pm and 8 am and a bank of nurses and health care assistants to cover remaining shifts. Methods The analysis draws on data from a qualitative study exploring carers experiences of using an out-of-hours roaming car service as well as those of registered nurses and health care assistants working together to provide care. The study aimed to understand what worked well as the challenges experienced to lead to improvements to the service. Of the eighty carers approached via post with information about the study by the hospice, four were interviewed via Skype. One focus group with two health professionals was conducted online. All participants resided in the northeast of England. Data analysis Thematic analysis was used to systematically organise, reduce, refine and analyse the interviews ( 34 ). This was supported by Krefting’s idea of double coding, where codes were used in the analysis process and then recording took place at a later stage to compare with the first coding ( 35 ). Findings were re-read and reviewed to ensure consistency with coding and analysis, and to build explanations to improve internal validity ( 36 ). Ethics This study received ethical approval from the university’s human research ethics committee ref no: 0438. All study procedures adhered to the World Health Organization’s Declaration of Helsinki. Informed consent to participate and to publish findings were obtained from all of the participants in the study. Focus group (Appendix I) and interview topic guide (Appendix II) were developed for this study only and have not been published elsewhere. They are available as supplementary files. Data was anonymised and pseudonyms were used to maintain confidentiality. Results A focus group with hospice staff identified three themes: challenges in communication; opportunities and what works; and service delivery. Interviews with participants who were family members on the whole reported positive findings. This demonstrated for these participants the majority of the components of the key ambitions’ framework were met: the provision of personalised care; access to 24 care; and the provision of quality care which also provided comfort and well-being. Focus group When presenting these themes, care has been taken to represent the views and opinions of participants accurately. Where quotes have been selected, these have been taken verbatim to illustrate the point being made and are not necessarily the sole view but are chosen to represent the views of the participants. Theme 1: Challenges in communication One of the challenges raised by participants was that of communication. The nature of the roaming car service means that healthcare professionals will be driving around the region rather than being in one place like an office or a hospital ward. While this situation can be beneficial in many ways it can also lead to isolation of staff and resulting communication problems. One of these problems is that there is a disjoint between services provided at different times of the day, resulting in nighttime staff on the roaming car sometimes being unaware of what has been happening during the day and vice versa: ‘… we're isolated at night and there's only two of us. We don't really know what's going on in the day. Some of the HCAs [Healthcare Assistants[ do work as support in the day. So they do know the families and Erin works in the community and knows some of the families. But you don't get, like, a joined up, like, care because you don't know what's going on in the community sometimes ’ (Cora, lines 200-205). As a result, the referral of and contact with patients can be complicated and difficult because the roaming car is constantly travelling between appointments. The Roaming Care staff reported that trying to get this information, including the full details of the patients, was often challenging: ‘… you get in the referral over the phone on and then you're writing down, you know, the NHS…You desperately need the NHS number and the address and the post code, otherwise you're struggling to find them ’ (Cora, lines 232-235). With Roaming Car staff reporting that more needs to be done to improve communication within the Roaming Car service, and other providers: ‘ I've turned up at many houses and…the night nurses are there or we're in the house. They turn up and you can see they are frustrated because they've got there as well. So there's this very disjointed [approach]. Everybody's trying to do their best and everybody's trying to get to the patient, but while two of us are chasing to one house, there is another patient who's waiting. So there's…Yeah. So that's frustrating ’ (Erin, lines 279-284). Communication difficulties like this not only impact on finding the patient and locating their health records. Challenges in communication also extend to outside the service. Staff on the Roaming Car Service spoke about how multiple services often arrived at a patient’s home at the same time. There were numerous occasions when the roaming car would arrive at an address to find an ambulance was already there, or the ambulance might arrive and find that the roaming car had already arrived. Similarly, some patients are unaware of the Roaming Car Service and what it provides for them and their families. This uncertainty sometimes results in families contacting multiple services simultaneously: ‘… you sometimes get patients ringing 111 and ringing us to see who the first person is to get there to visit, which is a waste of resources ’ (Cora, lines 269-271). Part of this issue is related to what Roaming Car staff said is the need to better promote the Roaming Car Service: ‘ there's some [sic] patients we're not getting to because either they're not aware of the service still. Or they're not sure what we provide ’ (Cora, lines 190-191). The slow development of the service and the lack of promotion about what it provides also led to both staff working in the service and other healthcare staff being worried about their job security: ‘… they [staff from other services] were very resistant to us at the beginning to pass anything on because I think they thought we were nicking their jobs, that they'd be without a job ’ (Erin, lines 71-74). Roaming Car staff said the service is growing but it can still be quiet some nights: ‘ We can go a couple of nights and there's nothing. And then one night it will be two or three visits ’ (Erin, lines 560-561). As a result of the slow service and some trepidation by wider healthcare professionals, some of the roaming car staff promote the service themselves. The service is starting to become more widely known and other healthcare staff are also promoting it, but it was still felt that the service could be better promoted and better connected to wider services: ‘ When the district nurses, local district nurses, do the shifts, the bank shift, you suddenly find there's an increase in their referral rates as well to the service ’ (Erin, lines 1306-1310). In addition to the promotion of the Roaming Car Service, problems with information technology (IT) are also at the heart of communication difficulties. Roaming Car staff spoke about an antiquated laptop and poor internet connection, which led to them often writing up notes by hand while out on visits. Those colleagues who were not very IT literate were placed at a further disadvantage with the complicated set-up: ‘ We've got this blooming laptop that you have to link to a phone, sync to a phone, do all these passwords, do everything else ’ (Erin, lines 288-290 and 294-295). Compared to the Toughbooks that district nurses use when visiting patients and the technology the day staff have in the High Peak area, Roaming Car staff said that their IT resources resulted in additional difficulties communicating with base, finding patient details, and recording visits. These issues are further complicated because the older laptop used by the roaming car service is not able to access the internet in remote locations: ‘… because of where we're located, there's so many areas [sic] where there's not good reception when we're out and about’ (India, lines 374-375). Roaming Car staff believed some of these problems are compounded by managers being unaware of their challenges. While their immediate manager was supportive and it was felt the individual was doing their best to champion them and promote the service, some staff felt other colleagues could possibly do more. Indeed, there was one comment from Erin was that ‘the boss’ has never worked with the Roaming Car service and may not be aware or understand the challenges they regularly face. Theme 2: Opportunities and what works Despite the communication challenges outlined above, other aspects of communication were highlighted as areas of positive working. Part of what Roaming Car staff welcomed and identified as a real strength of the service was the small team working and the mutual relationships they developed as part of this organisation, as explained by Cora: ‘ We work as a team, which is very important… They [non-nurses] support the staff nurses to support the family and we support each other really ’ (Cora, lines 194-196). This small team approach also provided the opportunity to learn from each other: ‘… we've all come from different backgrounds and we all operate differently. And it's nice because you pick up so much from each other ’ (Erin, lines 501-503). Despite the amount of driving involved to different patients across the geographical area covered by the Roaming Car service, this time in the car also provided opportunities for staff to talk to each other. These occasions, in turn, were felt to be valuable chances to build relationships and share information about what has happened during the shift: ‘… we talk it through and the nurses are brilliant. They're all brilliant. We talk it through very often, you know…We'll spend the whole journey home talking it through and talking about what could go wrong. But we can't fix that ’ (India, lines 1041-1044). These journeys between patients and backwards and forwards to base also provided an opportunity to relieve stresses and tensions which have built up during the shift. Indeed, this time was described by some Roaming Car staff as similar to supervisions, which Erin said she has not had previously in her jobs: ‘ I have to say in 40 years of nursing, I have never been offered any clinical support. However, I do manage to shout and swear a lot in the car if it's been a bad experience. Yeah. And I just find, like India said, as you know, we can be sat in the car for 40 minutes going back. And by the time we've got back, we've dug deep, and we've talked every little aspect through ’ (Erin, lines 1077-1081). Similarly, all participants praised their relationships with the service manager, who they described as friendly and approachable to discuss difficulties. Counsellors are also available at the hospice, although to date, Roaming Car staff have not used them. Although the relationships with some external services are challenging and have not yet fully flourished, positive relationships are also developing with some of the other services, as Erin described: ‘ T hat's the good bit that's evolved a lot, that there is much more collaborative working between us all. The evening nursing service within the xxxx xxxx and xxxxxx ring us a lot ’ (Erin, lines 79-84). These close relationships within the Roaming Car team reflected the trust and commitment of the staff involved. This confidence in each other was recognised by participants, who spoke about how this was beneficial when it came to double-checking the medications provided to patients: ‘ A lot of the nurses just like us do a double check. This is what I'm doing…Just a sanity check, really. Make sure, you know, just to be sure things are the right things being given. ’ (India, lines 35-37). As well as supporting each other, this supportive atmosphere was also transferred to provide emotional support for patients and their relatives. Sometimes this was what India described as ‘ hand holding, hugs, and reassurance ’ (line 38). At other times, support took more signposting and comfort in the loneliness of a long, dark night caring for a relative: ‘ I see the role from my point of view is that supporting patients and families in the community at night, when there's nobody about. It's a number to call to give support and to communicate to the community what we've been doing and either re-administer, or psychological or personal care support. Because not everybody can have night carers and things like that, so it's a long night when you're on your own and sometimes obviously you have…You don't always have family support ’ (Cora, lines 182-188). Part of this approach is also being a bit of a lifeline for families when they are unaware of what support is available for them. In this respect, the Roaming Car Service operates a multiple role service of providing care, support, and medication at the point of need, while also imparting information about additional support: ‘… once you've broken that barrier down and we've put the care in, they [the family] then take more and more and more because they suddenly realise there is help. Yeah. Yeah. It's getting through those sort of barriers ’ (Erin, lines 752-755). Therefore, an important, sometimes unseen, part of the work of the Roaming Car Service, is providing care and support when families need it and when they might not be able to afford carers, and also breaking down family barriers to care provision: ‘ And that's quite a lot of our time is spent doing that, is sort of saying, “Are you coping? You know. Quite often you can see someone and they're at the end of their tether and you can tell, you know, and then it's offering them the other support they can get ’ (India, lines 757-760). This trust and positivity appeared to be a feature of the relationships and was also evident in the support provided by the Roaming Car staff to patients and their families, which was apparent in emotional support, signposting, and breaking down the barriers to further support. Theme 3: Service delivery When discussing the Roaming Car Service, participants felt the strengths and opportunities the service provided also highlighted possibilities for smarter working. Some of these possibilities were around the shift pattern, which participants noted had increased from 10-hour shifts to 12-hour shifts, which they reported as tiring. As a result, driving has to be shared and it is more difficult for bank staff to work these longer shifts: ‘… for some of us this change to a 12-hour shift, because some of us are on bank, it's really quite difficult. I feel I can't do as much as I used to do. I used to be able to fit the smaller shifts in much more, so that I was safe working. I'd had enough rest between one job and going to the other ’ (Erin, lines 112-116). Participants also spoke about a smarter way of working to save time, energy, and resources. Erin shared an example when access to a patient’s house was delayed because of a combination of IT problems and poor service co-ordination. She managed to contact the out-of-hours service and prove who she was but said that at least half an hour can sometimes be wasted phoning different people and even the NHS 111 non-emergency number to gain access to the house. A more co-ordinated approach to service delivery, with better IT systems and a dedicated support contact can help reduce instances like this. Similarly, smarter working can lead to better communication and sharing of information through a more co-ordinated approach to information-sharing. Part of this might be having smaller mini bases to account for travelling across a wide geographical area during shifts and sharing information between day and night teams: ‘… we've been asking for a base in xxxxxx because a lot of our work is there. And if we were based where the DHU, the out-of-hours team are, I think that communication would be much better because they'd be popping into base and we'd be saying, like, right, “We've gone to Mr. Jones, Mrs. Smith, have you got any-“ Or I just….I feel we could work a little bit better with the nights ’ (Erin, lines 580-585). Indeed, the longer shifts and large geographical area can result in a lot of driving, which means that there is less time with patients: ‘… you can get back to base, travel all the way back, which happened to me from xxxxx. Got back to base…We unlocked the door, the phone went, and it was back to the same person. So it we spent most of the night in a car travelling up and down ’ (Erin, lines 627-630). Erin also shared how travelling between opposite ends of the geographical ‘patch’ they cover can take 90 minutes one-way. It is possible that the Roaming Car can travel this journey a few times during a single shift as referrals come in, which means that a lot of time is spent travelling. Participants felt that better organisation, use of additional bases, and more effective communication can help smarter working to allow the Roaming Car to focus on patient care and treatment rather than travelling between appointments. Staff from the Roaming Car Service also felt that out-of-hours services do not always match daytime services and so additional pressures were put on nighttime staff to fill the gaps: ‘… palliative care is very hit and miss in the community. To be fair, you know, some places do really good [sic] and some people don't. You find that, or I've found that…in xxxxx, it's very hit and miss ’ (Cora, lines 825-828). Cora added that staff only have one attempt to provide the care and so it needs to be right. The patchy service provision provides a particular challenge which is partly out of the remit of the Roaming Car Service but also presents an opportunity for better service provision and delivery and offers the Roaming Car Service a particular input around commissioning to ensure they get provision right. Opportunities for changes in service delivery were also reported in terms of caring duties. Reports of paid carers asleep, on their phone, or leaving the room when Roaming Car staff arrived meant the roaming car is sometimes filling in the role of a paid carer: ‘… we went to one the other night. I can't remember who it was with, and it's a very nice gentleman [sic] sat with this guy who was very close to dying, but he sat in a chair in the corner of the room waiting for him to die. Well, that's not caring ’ (India, lines 905-908). Despite the difficulties and challenges, participants felt that the Roaming Car Service offers good value for money overall. Care is provided in the home, it is personalised, and is generally more immediate than ambulance care, allowing 999 emergency services to attend the most urgent cases. As a result, there were felt to be more opportunities to develop the Roaming Car Service and highlight the value for money that it represents: ‘ Expectations-wise, I think we could probably meet more by visiting more patients and get, you know, and getting it a bit more, like I say, smarter or, like, linking with other roaming services ’ (Cora, lines 1224-1227). Participants felt that the Roaming Car Service is beneficial overall and provides an important service, which is good value for money. There are also further opportunities to develop the service, such as exploring ways to work smarter. Interviews with carers who are family members Four interviews were conducted with carers who used the Roaming Car service for a relative who has since died. All participants perceived the Roaming Car Service positively, and none identified areas for development or improvement. When discussing the Roaming Car Service, the participants recalled that contact with the Roaming Car Service was often made by the GP’s surgery, whether directly from the doctor or the nursing staff, or via night caring staff. Carers were usually given a list of phone numbers, which included that of the Roaming Car Service, or the hospice night staff contacted the Roaming Car Service directly to help provide additional support. As the health of patients deteriorated and their health condition, like cancer, progressed, the Roaming Car Service was introduced. This support was often provided as circumstances became more desperate, such as when patients stopped eating, more medication was needed, or patients needed settling at night: ‘ Often, Blythe House would be offering me help and support, literally at midnight and onwards…And they would come out and they might help with some medication or…At one point, she was on a pump… and the pump actually came out. The needle came out. And they came out to help with that and put that back in ’ (Kasim, lines 87-88, 92-94, and 98-99). Participants were clear that the Roaming Car Service offered different support to both patients and their family. Kasim explained that the support he received was purely medical: ‘ I didn’t feel that I needed any, if you like, psychological or social support. It was just when it was a medical issue that I couldn’t deal with and they were on the end of the phone ’ (Kasim, lines 107-109). This reassurance came in the form of medical administration, information about end-of-life trajectory, and having someone coming in to talk to and share what had happened with. For other carers, like Megan, the support extended to someone to share a cup of tea with. Either way, reassurance was a constant theme in the interviews and this support and care provided by the Roaming Car Service also meant the patient could stay at home where both they and their family felt comfortable: ‘… the other alternative [to the Roaming Car Service] was that she’d [my Mother] have to have to have gone into hospital or a home and she did not want to do that. I mean, she was offered the choice to go into hospital in the latter stages and she didn’t want to. And I was glad that the Roaming Service allowed her that opportunity to stay at home in the last couple of weeks. And I think that…you know, surrounded by her animals and what have you, was a real…added to her last days of…quality of her life in the last few months .’ (Kasim, lines 450-456). This was echoed by Brenda when discussing the care, the Roaming Service provided for her Mum: ‘ W hat the Roaming Service did was give you that little bit of comfort ’ (Brenda, lines 161-162). Support was often provided in the last few months of life, when situations became acute and frequent practical support or advice was needed quickly. These situations also helped to reassure families that the best and most effective care was being provided in the circumstances: ‘ I found it very reassuring, just to have somebody else come in with a different pair of eyes and, you know, pick up on things or identify that she was okay as she was ’ (Kasim, lines 175-177). As part of the approach of the Roaming Car Service, good communication helped provide this reassurance and put both patients and their families at ease. Bruce explained how staff were chatty and approachable, which helped to provide effective wrap-around care for his Mother-in-law, consisting of the GP, hospice staff, and night carers, as well as the Roaming Car Service. Similarly, Megan said she felt at ease with the Roaming Car staff: ‘… they [Roaming Car staff] made me feel great. Talked to me. Made me feel like I wasn’t mithering, I wasn’t a problem, ‘cos I really think I should be able to cope with everything on my own. And to be given that reassurance was a massive thing ’ (Megan, lines 109-112). This support and care also extended to verifying the death of relatives, which Megan described made the whole process of care, death, and grieving easier than expected: ‘… it [the Roaming Car Service] must save the NHS a fortune, you know, it must, because…Well…it was smooth, it was as clear, it was as easy as it could be, the whole thing ’ (Megan, lines 304-306). The service was also available very quickly. For example, Kasim spoke about a phone call to the service often resulted in swift attendance, sometimes within 20 minutes and generally in under an hour. This was echoed by Bruce: ‘ They were there as quick as you can be from where, you know, from where the house is compared to where the car would be roaming, you know. It’s a way away from known civilisation ’ (Bruce, lines 581-583). The immediacy of care was considered better than the NHS 111 service and the care and attention from the Roaming Car Service also allowed for a better death, which, in turn, help the grieving process. ‘… It was the Roaming Service that enabled me to have the strength to keep Toby at home and to meet his health needs…He was calm and he died at 9 minutes past midnight with me next to him in my pyjamas. And, yeah, it couldn’t have been more peaceful. And because of that, I was able to cope a lot better ’ (Megan, lines 666-667 and 171-173). Finally, most participants recognised that while the Roaming Car Service was very good and they were pleased with what was provided, it was clear that the service was in its infancy. Both Brenda and Bruce relayed that the service needed to be better promoted. Nevertheless, the combination of what was felt to be a nurse and a non-nurse in the roaming car provided a very good balance of skills and a firm basis on which the service was built. Discussion This study adds to the growing literature on out-of-hours services particularly in a rural area in England where considerable distances and hard to reach dwellings need to be accessed to provide high-quality end-of-life care to enable individual to die at home. It highlights how a unique Roaming Car service addresses gaps in the provision of support to families in rural areas whilst also revealing the challenges in delivering a relatively new service. Consistent with prior research pertaining to out-of-hours services for individuals and their families at the end of life ( 5 , 22 , 23 , 26 , 27 ) the findings from the focus group highlight systemic barriers due to by a lack of a co-ordinated approach among providers and an initial lack of information sharing as well as mistrust by staff from other providers ( 20 ). The Roaming Care service aligns with national driven strategies to provide and deliver 24/7, good quality care, and to address inequity in access at least in terms of responding to need in a rural area ( 12 , 13 ). This study’s participants comprising family members demonstrated the importance of providing timely and personal and psycho-social care to families at a critical juncture of end-of-life to enable a person to die at home reflecting parallels with elements of the Key Ambitions Framework ( 13 ). However, the staff within the service lacked robust IT equipment which amplified the burden on staff who had to travel considerable distances on long shifts to access and support patients and their families. This highlights the need for the service to first be aware of such challenges and second, to up-date IT equipment to sustain the service and to consider hubs in between rural areas ( 31 ). The evidence while based on a small number of participants points to an out-of-hours service which is viewed favourably. Staffed by skilled professionals ( 6 ). participants accounts demonstrate what works well. What is unique to this study concerning a Roaming Care service was examples of positive relationships reported by staff and opportunities to learn from one another. None more so than an opportunity to unpack and diffuse from events from the events of a night shift, much like an informal supervision as well as support from the service manager. While the Roaming Car service provides crucial relief, the findings stress the importance of sustainable reforms that support professionals to deliver equitable care in rural areas reinforcing the need to collect data about the service, how it works ( 6 ) as well as ongoing feedback by families and professionals. Implications for policy and practice The study findings demonstrate the contribution of the Roaming Car service and the support that skilled professionals provide to enable people to die at home especially in rural areas. Yet, it also highlights the limitations in a service that operates with some limited resources compared with other providers. While greater integration with the NHS, social and health care enable an integrated way of working to overcome the challenges described, this has at times proved to be an elusive goal. Given that the service is relatively new, greater promotion of the Roaming Car service and what it provides and to whom as well as the routine collection of data could enhance its sustainability in the longer-term. Limitations and future research This study focuses on the experiences of a small number of participants who use an out-of-hours service specifically developed to provide support and care in rural area with hard-to-reach dwellings. The experiences derived from a small sample may not reflect the experiences of carers who use the service more widely. The small sample is reflective of the changing role of carers and where they live post death such that they no longer resided at the address where they undertook a caring role at the time of the study. One way to mitigate this is to include participants who use the out of hours service while actively caring. However, this may be a burden in terms of a carers psychological resources and focus on care at the end-of-life. Similarly, recruitment of staff to the focus group was limited due to availability of staff and interviews may have yielded greater participation. Conclusion This study highlights the contribution of an out-of-hours service for patients and families at the end-of-life living in rural areas. It also identifies the challenges experienced by skilled health professionals in realising the aim of the service to meet the key Ambitions for palliative care and end of life care: a national framework for local action 2021–2026. While there is clear commitment in providing high-quality personalised care, the findings emphasise the importance to respond to inadequacies which hinder the delivery of such care. Developing locally driven solutions by raising awareness of the service, supporting hubs to operationalise equipment can support the development of a service which specifically addresses the needs of rural communities. Declarations Ethics approval and consent to participate This study was approved by The Open University Human Research Ethics Committee, 0438. All study procedures adhered to the World Health Organization’s Declaration of Helsinki. Informed consent to participate was obtained from all of the participants in the study. Consent to publish N/a Availability of data and materials All data generated or analysed during this study are included in this published article. Supplementary file documents focus group topic guide and interview research schedule have been included. Competing interests The authors declare no potential conflicts of interest with respect to the research, authorship and or publication of this article. Funding The study was supported by The Open University’s Research Development programme Authors' contributions KJ conceived the idea for the study, wrote the main background, methods section, discussion, conclusion, limitations and implications sections. BH analysed and wrote the results rection. Both authors reviewed the manuscript. Acknowledgements The authors would like to thank the staff from the hospice and Trust who supported this study and the participants who shared their experiences. References Bone AE, Gomes B, Etkind SN, Verne J, Murtagh FEM, Evans CJ, et al. What is the impact of population ageing on the future provision of end-of-life care? Population-based projections of place of death. Palliative Medicine 2018; 32: 329–336. Etkind SN, Bone AE, Gomes B, Lovell N, Evans J, Higginson IJ, et al. How many people will need palliative care in 2040? Past trends, future projections and implications for services. BMC Medicine 2017; 15: 102. Sleeman KE, de Brito M, Etkind S, Nkhuma K, Guo P, Higginson IJ, et al. (2019) The escalating global burden of serious health-related suffering: projections to 2060 by world regions, age groups, and health conditions. Lancet Global Health. 2019; 7. World Health Organization. Palliative Care. 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Nysæter TM, Olsson C, Sandsdalen T, Wilde-Larsson, B, Hov R, Larrson M. Preferences for home care to enable home death among adult patients with cancer in late palliative phase – a grounded theory study. BMC Palliative Care. 2022; 21, 49. Okamoto I, Pask S. Johansson T, Chambers RL, Mohamed A, Mc Farlane, PG, et al. Challenges to timely access to out-f-hours end-of-life medications: a qualitative study in UK primary care. British Journal of General Practice. 2025; 75. Fee A, Hasson F, Slater P, Payne S, McConnell T, Finlay DA. et al. Out-of-hours community palliative care: a national survey of hospice providers. International Journal of Palliative Nursing . 2023; 29, 3. Department of Health. End of Life Care Strategy - promoting high quality care for all adults at the end of life. London; Department of Health. 2008. https://doi.org/10.1080/17571472.2009.11493261 (accessed 5/10/25) National Palliative and End of Life Care Partnership. Ambitions for palliative and end of life care: a national framework for local action 2021–2026. National Palliative and End of Life Care Partnership. 2021. NHS England » Ambitions for Palliative and End of Life Care: A national framework for local action 2021-2026 (accessed on 5/10/25) Rees-Roberts M, Williams P, Hashem F, Greene K, Gage H, Goodwin, M. et al. (2021) Hospice at Home services in England: a national survey. BMJ Support Palliative Care. 2021; 11, 4: 454–460. Brettell R , Fisher R, Hunt H, Garland S, Lasserson D, Hayward G. What proportion of patients at the end of life contact out-of-hours primary care? A data linkage study in Oxfordshire. BMJ Open 2018; https://doi.org/10.1136/bmjopen-2017-020244 Papavasiliou E, Hoare S, Bowers B, Kelly MP, Barclay, S. (2021) Out-of-hours services and end-of-life hospital admissions: A complex intervention systematic review and narrative synthesis. British Journal of General Practice. 2021; 71. Choice in End of Life Care Programme Board (2015) What’s important to me. A review of choice in end-of-life care. London: The Choice in End-of-Life Care Programme Board. 2015; ANNEX A: Summary of findings from public engagement on the National Review of Choice in End of Life Care (accessed 4/10/25) Henson LA, Higginson IJ, Daveson BA, Ellis-Smith C, Koffman J, Morgan M. et al. (2016) 'I'll be in a safe place': a qualitative study of the decisions taken by people with advanced cancer to seek emergency department care. BMJ Open. 2016; 6. Baird-Bower D, Roach J, Andrews M, Onslow F, Curnin E. (2016) Help is just a phone call away: after -hours support for palliative care patients wishing to die at home. International Journal of Palliative Nursing. 2016; 22, 6. Baldry CR, Jack BA, Groves KE, Birch H, Shard, A. Establishing a hospice at home service: lessons to share. International Journal of Practice Development. 2011; 1, 2: 5 Chambers RL, Pask S, Higginson IJ, Barclay S, Murtagh FEM, Sleeman K. Inclusion of palliative and end of life care in health strategies aimed at integrated care: a documentary analysis. AMRC Open Research. 2023; 4: 19. Cox S, Murtagh FEM, Tookman A, Gage A, Sykes N, McGinn M, Kathoria M, Wildersen H, Chart, L. A review of specialist palliative care provision and access across London - mapping the capital. London Journal of Primary Care. 2017; 9: 33–37. Hospice UK. Equality in hospice and end of life care: challenges and change. London: Hospice UK. 2021. Equality in Hospice and End of Life Care: Challenges and change | Hospice UK (accessed 5/10/25) Goodrich J, Watson C, Gaczkowska I. Understanding patient and family utilisation of community-based palliative care services out-of-hours: additional analysis of systematic review evidence using narrative synthesis. PLoS One. 2024; 19, 2. Keeble E, Scobie S, Hutchings R. Support at the end of life: the role of hospice services across the UK. London: Nuffield Trust. 2022. Support at the end of life: The role of hospice services across the UK | Nuffield Trust (accessed 7/10/25) Aker N, Griffiths S, Kupeli N, Frost R, Nair P, Walters K. et al. Experiences and access of palliative and end of life care for older people from minority ethnic groups: a scoping review. BMC Palliative Care. 2024; 23, 228. Chukwusa E, Verne J, Polato G, Taylor RJ, Higginson I, Gao W. (2019) Urban and rural differences in geographical accessibility to inpatient palliative and end-of-life (PEoLC) facilities and place of death: a national population-based study in England, UK. International Journal Health Geography . 2019; May 6.18,1:8. Fasolino T, Mayfield ME, Valentine K, William RE, Koci A. Palliative Care in Rural Communities. American Journal of Nursing . 2024; 124, 8: 50-55. French M, Keegan T, Anestis E, Preston N. (2021) Exploring socioeconomic inequities in access to palliative and end-of-life care in the UK: a narrative synthesis. BMC Palliative Care. 2021; Nov, 20, 1:179. Sítima G, Galhardo-Branco C, Reis-Pina P. (2024) Equity of access to palliative care: a scoping review. International Journal for Equity in Health. 2024; 23, 248. Barker J. P-211 Lessons in End-of-Life commissioning: a brave move? BMJ Supportive & Palliative Care. 2021;11: A85. https://doi.org/10.1136/spcare-2021-Hospice. Harrop E, Goss S, Farnell D, Longo M, Byrne A, Barawi K. et al. (2021) Support needs and barriers to accessing support: Baseline results of a mixed-methods national survey of people bereaved during the COVID-19 pandemic. Palliative Medicine. 2021; 35, 10: 1985-1997. Coldrick C, Crimmons K. Family members’ and carers’ perceptions of palliative care provided by district nurses. Primary Health Care. 2019; 30. Attride-Stirling J. Thematic networks: an analytic tool for qualitative research . Qualitative Research. 2001; 1, 3: 385-405. Baxter P, Jack S. Qualitative Case Study Methodology: Study Design and Implementation for Novice Researchers. The Qualitative Report. 2008; 13, 4: 544-559. Yin RK. (2014). Case Study Research Design and Methods (5th ed.). Thousand Oaks, California: Sage. 2014. Additional Declarations No competing interests reported. Supplementary Files BMCAppendixIFocusGroupGuideStaff.docx BMCAppendixIIInterviewTopicGuideCarers.docx Cite Share Download PDF Status: Posted Version 1 posted You are reading this latest preprint version Research Square lets you share your work early, gain feedback from the community, and start making changes to your manuscript prior to peer review in a journal. As a division of Research Square Company, we’re committed to making research communication faster, fairer, and more useful. We do this by developing innovative software and high quality services for the global research community. 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class=\"CitationRef\"\u003e3\u003c/span\u003e, \u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e, \u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e) which has been exacerbated by the Covid-19 pandemic (\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e, \u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e, \u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e). With evidence demonstrating that most people would prefer to be cared for to die at home (\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e, \u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e) provided they can access round the clock community- based palliative care (\u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e), is widely advocated by palliative care frameworks globally (\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e).\u003c/p\u003e\u003cp\u003eSince the first national strategy for end-of-life care in England published by the Department of Health (\u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e), end-of-life care policy has increasingly focused on localised action to ensure greater equity in access to palliative care (\u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e). The current key policy for end-of-life care at home is the Ambitions for palliative care and end of life care: a national framework for local action 2021\u0026ndash;2026 (\u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e). It sets out six key ambitions for the provision of high-quality care such as personalised care; access to end-of-life care; comfort and well-being; co-ordination; staff capability; community support. Each ambition is built on a set of common foundations such as personalised care planning; shared records and information; evidence and information, 24/7 access; co-design and leadership. The Health and Care Act 2022 further supported integration between the range of services which are involved in end-of-life care at home. It also mandated Integrated Care Board\u0026rsquo;s specifically to commission end-of-life care to meet the reasonable needs of the population via outreach and domiciliary services (\u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e).\u003c/p\u003e\u003cp\u003eA key contribution of outreach services has been the development of out of hours provision of end-of-life care at home (\u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e, \u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e) where patients and families receive palliative care provided out of working hours in the evenings, nights, weekends and 365 days of the year (\u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e). Enabling patients and their families to receive palliative care that is responsive to their needs, and which is delivered by skilled professionals (\u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e) can increase the possibility of dying at home and reduce symptom distress (\u003cspan citationid=\"CR19\" class=\"CitationRef\"\u003e19\u003c/span\u003e). Intended as a rapid response out-of-hours service, the provision of such support includes personal care, symptom management, psychosocial care such as helping to manage anxiety (\u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e, \u003cspan citationid=\"CR20\" class=\"CitationRef\"\u003e20\u003c/span\u003e).\u003c/p\u003e\u003cp\u003eWhile recent legislation has mandated that all Integrated Care Boards ensure palliative care is available to enable people to die at home well, few boards, have developed adequate strategic plans to realise these aims (\u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e21\u003c/span\u003e). Moreover, access to palliative care out of hours is variable (\u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e), in terms of quality and accessibility (\u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e) with many patients in receipt of out of hours care being individuals diagnosed with cancer (\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e, \u003cspan citationid=\"CR24\" class=\"CitationRef\"\u003e24\u003c/span\u003e). Yet, many deaths which occur annually in England and Wales are caused by non-cancer conditions (\u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e, \u003cspan citationid=\"CR25\" class=\"CitationRef\"\u003e25\u003c/span\u003e).\u003c/p\u003e\u003cp\u003eAccessing such care can also prove problematic due to late referrals to out of hours services, a lack of co-ordinated communication between various health care providers and, inequity experienced by terminally ill patients in rural areas, those from socio- economically disadvantaged backgrounds and among patients from ethnically diverse communities (\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e, \u003cspan citationid=\"CR26\" class=\"CitationRef\"\u003e26\u003c/span\u003e, \u003cspan citationid=\"CR27\" class=\"CitationRef\"\u003e27\u003c/span\u003e, \u003cspan citationid=\"CR28\" class=\"CitationRef\"\u003e28\u003c/span\u003e, \u003cspan citationid=\"CR29\" class=\"CitationRef\"\u003e29\u003c/span\u003e, \u003cspan citationid=\"CR30\" class=\"CitationRef\"\u003e30\u003c/span\u003e). This points to a level of unmet need including those reported by carers who are caring for family members at the end-of-life.\u003c/p\u003e\u003cp\u003eThe factors which contribute to unmet need include poor communication between services, individuals and families, fear by staff that a new service will diminish their role (\u003cspan citationid=\"CR20\" class=\"CitationRef\"\u003e20\u003c/span\u003e), community health services being spread thinly and staff lacking knowledge and skills (\u003cspan citationid=\"CR31\" class=\"CitationRef\"\u003e31\u003c/span\u003e). Indeed, a survey conducted with carers in 2020 (\u003cspan citationid=\"CR32\" class=\"CitationRef\"\u003e32\u003c/span\u003e) revealed that 67 percent of respondents reported they were unable to say goodbye to a loved one in the way they would have liked, while 23 percent said they were not involved in decision concerning the care of the dying person. Moreover, many carers (51 percent) reported high levels of overall vulnerability and grief (\u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e).\u003c/p\u003e\u003cp\u003eWhile there is no one model of end-of-life care that is considered to deliver higher quality care than another, there is evidence to suggest that health professionals such as district nurses are perceived favourably by families and colleagues (\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e, \u003cspan citationid=\"CR33\" class=\"CitationRef\"\u003e33\u003c/span\u003e). However, there remains a dearth of accounts as to the effectiveness of out of hours services in the UK. A major challenge has been the lack of routinely collected data about hospice services and in the way they work (\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e). Further, there has been relatively little research pertaining to those in receipt of specialist care and frontline professionals who provide it.\u003c/p\u003e\u003cp\u003eThe study\u003c/p\u003e\u003cp\u003e The qualitative retrospective study reported here was based on a review of an out-of-hours nurse-led roaming car service developed for palliative care patients and their carers by a hospice in a rural area of the north-east of England. The service was established to extend the services provided by the hospice in a rural area where there was very little access to rapid palliative care during the night. The paper contributes to an understanding of the service; it\u0026rsquo;s contribution to out of hours care including the challenges in delivering provision of palliative care based on the perspectives of front-line staff and family members.\u003c/p\u003e\u003cp\u003eThe service itself supports patients and their carers who need access to urgent care particularly overnight to manage symptoms including pain, breathlessness, restlessness and anxiety. Carers are supported to cope, particularly with the stress and anxiety associated with end-of-life care. The service works collaboratively with GP\u0026rsquo;s, community services as well as other night-time service providers such as 111 and district nurses to ensure that families receive help as quickly as possible. The service consists of 2 registered nurses (to cover 5 nights a week) and 2 health care assistants (to cover 6 nights a week) who deliver the roaming service between the hours of 8 pm and 8 am and a bank of nurses and health care assistants to cover remaining shifts.\u003c/p\u003e"},{"header":"Methods","content":"\u003cp\u003eThe analysis draws on data from a qualitative study exploring carers experiences of using an out-of-hours roaming car service as well as those of registered nurses and health care assistants working together to provide care. The study aimed to understand what worked well as the challenges experienced to lead to improvements to the service. Of the eighty carers approached via post with information about the study by the hospice, four were interviewed via Skype. One focus group with two health professionals was conducted online. All participants resided in the northeast of England.\u003c/p\u003e\u003cdiv id=\"Sec3\" class=\"Section2\"\u003e\u003ch2\u003eData analysis\u003c/h2\u003e\u003cp\u003eThematic analysis was used to systematically organise, reduce, refine and analyse the interviews (\u003cspan citationid=\"CR34\" class=\"CitationRef\"\u003e34\u003c/span\u003e). This was supported by Krefting\u0026rsquo;s idea of double coding, where codes were used in the analysis process and then recording took place at a later stage to compare with the first coding (\u003cspan citationid=\"CR35\" class=\"CitationRef\"\u003e35\u003c/span\u003e). Findings were re-read and reviewed to ensure consistency with coding and analysis, and to build explanations to improve internal validity (\u003cspan citationid=\"CR36\" class=\"CitationRef\"\u003e36\u003c/span\u003e).\u003c/p\u003e\u003cp\u003eEthics\u003c/p\u003e\u003cp\u003e This study received ethical approval from the university\u0026rsquo;s human research ethics committee ref no: 0438. All study procedures adhered to the World Health Organization\u0026rsquo;s Declaration of Helsinki. Informed consent to participate and to publish findings were obtained from all of the participants in the study. Focus group (Appendix I) and interview topic guide (Appendix II) were developed for this study only and have not been published elsewhere. They are available as supplementary files. Data was anonymised and pseudonyms were used to maintain confidentiality.\u003c/p\u003e\u003c/div\u003e"},{"header":"Results","content":"\u003cp\u003eA focus group with hospice staff identified three themes: challenges in communication; opportunities and what works; and service delivery. Interviews with participants who were family members on the whole reported positive findings. This demonstrated for these participants the majority of the components of the key ambitions\u0026rsquo; framework were met: the provision of personalised care; access to 24 care; and the provision of quality care which also provided comfort and well-being.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eFocus group\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eWhen presenting these themes, care has been taken to represent the views and opinions of participants accurately. Where quotes have been selected, these have been taken verbatim to illustrate the point being made and are not necessarily the sole view but are chosen to represent the views of the participants.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eTheme 1: Challenges in communication\u0026nbsp;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eOne of the challenges raised by participants was that of communication. The nature of the roaming car service means that healthcare professionals will be driving around the region rather than being in one place like an office or a hospital ward. While this situation can be beneficial in many ways it can also lead to isolation of staff and resulting communication problems. One of these problems is that there is a disjoint between services provided at different times of the day, resulting in nighttime staff on the roaming car sometimes being unaware of what has been happening during the day and vice versa:\u003c/p\u003e\n\u003cp\u003e\u0026lsquo;\u0026hellip;\u003cem\u003ewe\u0026apos;re isolated at night and there\u0026apos;s only two of us. We don\u0026apos;t really know what\u0026apos;s going on in the day. Some of the HCAs\u0026nbsp;\u003c/em\u003e[Healthcare Assistants[ \u003cem\u003edo work as support in the day. So they do know the families and Erin works in the community and knows some of the families. But you don\u0026apos;t get, like, a joined up, like, care because you don\u0026apos;t know what\u0026apos;s going on in the community sometimes\u003c/em\u003e\u0026rsquo; (Cora, lines 200-205).\u003c/p\u003e\n\u003cp\u003eAs a result, the referral of and contact with patients can be complicated and difficult because the roaming car is constantly travelling between appointments. The Roaming Care staff reported that trying to get this information, including the full details of the patients, was often challenging:\u003c/p\u003e\n\u003cp\u003e\u0026lsquo;\u0026hellip;\u003cem\u003eyou get in the referral over the phone on and then you\u0026apos;re writing down, you know, the NHS\u0026hellip;You desperately need the NHS number and the address and the post code, otherwise you\u0026apos;re struggling to find them\u003c/em\u003e\u0026rsquo; (Cora, lines 232-235).\u003c/p\u003e\n\u003cp\u003eWith Roaming Car staff reporting that more needs to be done to improve communication within the Roaming Car service, and other providers:\u003c/p\u003e\n\u003cp\u003e\u0026lsquo;\u003cem\u003eI\u0026apos;ve turned up at many houses and\u0026hellip;the night nurses are there or we\u0026apos;re in the house. They turn up and you can see they are frustrated because they\u0026apos;ve got there as well. So there\u0026apos;s this very disjointed\u0026nbsp;\u003c/em\u003e[approach].\u003cem\u003e\u0026nbsp;Everybody\u0026apos;s trying to do their best and everybody\u0026apos;s trying to get to the patient, but while two of us are chasing to one house, there is another patient who\u0026apos;s waiting. So there\u0026apos;s\u0026hellip;Yeah. So that\u0026apos;s frustrating\u003c/em\u003e\u0026rsquo; (Erin, lines 279-284).\u003c/p\u003e\n\u003cp\u003eCommunication difficulties like this not only impact on finding the patient and locating their health records. Challenges in communication also extend to outside the service. Staff on the Roaming Car Service spoke about how multiple services often arrived at a patient\u0026rsquo;s home at the same time. There were numerous occasions when the roaming car would arrive at an address to find an ambulance was already there, or the ambulance might arrive and find that the roaming car had already arrived. Similarly, some patients are unaware of the Roaming Car Service and what it provides for them and their families. This uncertainty sometimes results in families contacting multiple services simultaneously:\u003c/p\u003e\n\u003cp\u003e\u0026lsquo;\u0026hellip;\u003cem\u003eyou\u003c/em\u003e \u003cem\u003esometimes get patients ringing 111 and ringing us to see who the first person is to get there to visit, which is a waste of resources\u003c/em\u003e\u0026rsquo; (Cora, lines 269-271).\u003c/p\u003e\n\u003cp\u003ePart of this issue is related to what Roaming Car staff said is the need to better promote the Roaming Car Service:\u003c/p\u003e\n\u003cp\u003e\u0026lsquo;\u003cem\u003ethere\u0026apos;s some\u0026nbsp;\u003c/em\u003e[sic]\u003cem\u003e\u0026nbsp;patients we\u0026apos;re not getting to because either they\u0026apos;re not aware of the service still. Or they\u0026apos;re not sure what we provide\u003c/em\u003e\u0026rsquo; (Cora, lines 190-191).\u003c/p\u003e\n\u003cp\u003eThe slow development of the service and the lack of promotion about what it provides also led to both staff working in the service and other healthcare staff being worried about their job security:\u003c/p\u003e\n\u003cp\u003e\u0026lsquo;\u0026hellip;\u003cem\u003ethey\u0026nbsp;\u003c/em\u003e[staff from other services] \u003cem\u003ewere very resistant to us at the beginning to pass anything on because I think they thought we were nicking their jobs, that they\u0026apos;d be without a job\u003c/em\u003e\u0026rsquo; (Erin, lines 71-74).\u003c/p\u003e\n\u003cp\u003eRoaming Car staff said the service is growing but it can still be quiet some nights:\u003c/p\u003e\n\u003cp\u003e\u0026lsquo;\u003cem\u003eWe can go a couple of nights and there\u0026apos;s nothing. And then one night it will be two or three visits\u003c/em\u003e\u0026rsquo; (Erin, lines 560-561).\u003c/p\u003e\n\u003cp\u003eAs a result of the slow service and some trepidation by wider healthcare professionals, some of the roaming car staff promote the service themselves. The service is starting to become more widely known and other healthcare staff are also promoting it, but it was still felt that the service could be better promoted and better connected to wider services:\u003c/p\u003e\n\u003cp\u003e\u0026lsquo;\u003cem\u003eWhen the district nurses, local district nurses, do the shifts, the bank shift, you suddenly find there\u0026apos;s an increase in their referral rates as well to the service\u003c/em\u003e\u0026rsquo; (Erin, lines 1306-1310).\u003c/p\u003e\n\u003cp\u003eIn addition to the promotion of the Roaming Car Service, problems with information technology (IT) are also at the heart of communication difficulties. Roaming Car staff spoke about an antiquated laptop and poor internet connection, which led to them often writing up notes by hand while out on visits. Those colleagues who were not very IT literate were placed at a further disadvantage with the complicated set-up:\u003c/p\u003e\n\u003cp\u003e\u0026lsquo;\u003cem\u003eWe\u0026apos;ve got this blooming laptop that you have to link to a phone, sync to a phone, do all these passwords, do everything else\u003c/em\u003e\u0026rsquo; (Erin, lines 288-290 and 294-295).\u003c/p\u003e\n\u003cp\u003eCompared to the Toughbooks that district nurses use when visiting patients and the technology the day staff have in the High Peak area, Roaming Car staff said that their IT resources resulted in additional difficulties communicating with base, finding patient details, and recording visits. These issues are further complicated because the older laptop used by the roaming car service is not able to access the internet in remote locations:\u003c/p\u003e\n\u003cp\u003e\u0026lsquo;\u0026hellip;\u003cem\u003ebecause of where we\u0026apos;re located, there\u0026apos;s so many areas\u003c/em\u003e [sic]\u003cem\u003e\u0026nbsp;where there\u0026apos;s not good reception when we\u0026apos;re out and about\u0026rsquo;\u003c/em\u003e (India, lines 374-375).\u003c/p\u003e\n\u003cp\u003eRoaming Car staff believed some of these problems are compounded by managers being unaware of their challenges. While their immediate manager was supportive and it was felt the individual was doing their best to champion them and promote the service, some staff felt other colleagues could possibly do more. Indeed, there was one comment from Erin was that \u0026lsquo;the boss\u0026rsquo; has never worked with the Roaming Car service and may not be aware or understand the challenges they regularly face.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eTheme 2: Opportunities and what works\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eDespite the communication challenges outlined above, other aspects of communication were highlighted as areas of positive working. Part of what Roaming Car staff welcomed and identified as a real strength of the service was the small team working and the mutual relationships they developed as part of this organisation, as explained by Cora:\u003c/p\u003e\n\u003cp\u003e\u0026lsquo;\u003cem\u003eWe work as a team, which is very important\u0026hellip; They\u0026nbsp;\u003c/em\u003e[non-nurses] \u003cem\u003esupport the staff nurses to support the family and we support each other really\u003c/em\u003e\u0026rsquo; (Cora, lines 194-196).\u003c/p\u003e\n\u003cp\u003eThis small team approach also provided the opportunity to learn from each other:\u003c/p\u003e\n\u003cp\u003e\u0026lsquo;\u0026hellip;\u003cem\u003ewe\u0026apos;ve all come from different backgrounds and we all operate differently. And it\u0026apos;s nice because you pick up so much from each other\u003c/em\u003e\u0026rsquo; (Erin, lines 501-503).\u003c/p\u003e\n\u003cp\u003eDespite the amount of driving involved to different patients across the geographical area covered by the Roaming Car service, this time in the car also provided opportunities for staff to talk to each other. These occasions, in turn, were felt to be valuable chances to build relationships and share information about what has happened during the shift:\u003c/p\u003e\n\u003cp\u003e\u0026lsquo;\u0026hellip;\u003cem\u003ewe talk it through and the nurses are brilliant. They\u0026apos;re all brilliant. We talk it through very often, you know\u0026hellip;We\u0026apos;ll spend the whole journey home talking it through and talking about what could go wrong. But we can\u0026apos;t fix that\u003c/em\u003e\u0026rsquo; (India, lines 1041-1044).\u003c/p\u003e\n\u003cp\u003eThese journeys between patients and backwards and forwards to base also provided an opportunity to relieve stresses and tensions which have built up during the shift. Indeed, this time was described by some Roaming Car staff as similar to supervisions, which Erin said she has not had previously in her jobs:\u003c/p\u003e\n\u003cp\u003e\u0026lsquo;\u003cem\u003eI have to say in 40 years of nursing, I have never been offered any clinical support. However, I do manage to shout and swear a lot in the car if it\u0026apos;s been a bad experience. Yeah. And I just find, like India said, as you know, we can be sat in the car for 40 minutes going back. And by the time we\u0026apos;ve got back, we\u0026apos;ve dug deep, and we\u0026apos;ve talked every little aspect through\u003c/em\u003e\u0026rsquo; (Erin, lines 1077-1081).\u003c/p\u003e\n\u003cp\u003eSimilarly, all participants praised their relationships with the service manager, who they described as friendly and approachable to discuss difficulties. Counsellors are also available at the hospice, although to date, Roaming Car staff have not used them.\u003c/p\u003e\n\u003cp\u003eAlthough the relationships with some external services are challenging and have not yet fully flourished, positive relationships are also developing with some of the other services, as Erin described:\u003c/p\u003e\n\u003cp\u003e\u0026lsquo;\u003cem\u003eT\u003c/em\u003e\u003cem\u003ehat\u0026apos;s the good bit that\u0026apos;s evolved a lot, that there is much more collaborative working between us all. The evening nursing service within the xxxx xxxx and xxxxxx ring us a lot\u003c/em\u003e\u0026rsquo; (Erin, lines 79-84).\u003c/p\u003e\n\u003cp\u003eThese close relationships within the Roaming Car team reflected the trust and commitment of the staff involved. This confidence in each other was recognised by participants, who spoke about how this was beneficial when it came to double-checking the medications provided to patients:\u003c/p\u003e\n\u003cp\u003e\u0026lsquo;\u003cem\u003eA lot of the nurses just like us do a double check. This is what I\u0026apos;m doing\u0026hellip;Just a sanity check, really. Make sure, you know, just to be sure things are the right things being given.\u003c/em\u003e\u0026rsquo; (India, lines 35-37).\u003c/p\u003e\n\u003cp\u003eAs well as supporting each other, this supportive atmosphere was also transferred to provide emotional support for patients and their relatives. Sometimes this was what India described as \u0026lsquo;\u003cem\u003ehand holding, hugs, and reassurance\u003c/em\u003e\u0026rsquo; (line 38). At other times, support took more signposting and comfort in the loneliness of a long, dark night caring for a relative:\u003c/p\u003e\n\u003cp\u003e\u0026lsquo;\u003cem\u003eI see the role from my point of view is that supporting patients and families in the community at night, when there\u0026apos;s nobody about. It\u0026apos;s a number to call to give support and to communicate to the community what we\u0026apos;ve been doing and either re-administer, or psychological or personal care support. Because not everybody can have night carers and things like that, so it\u0026apos;s a long night when you\u0026apos;re on your own and sometimes obviously you have\u0026hellip;You don\u0026apos;t always have family support\u003c/em\u003e\u0026rsquo; (Cora, lines 182-188).\u003c/p\u003e\n\u003cp\u003ePart of this approach is also being a bit of a lifeline for families when they are unaware of what support is available for them. In this respect, the Roaming Car Service operates a multiple role service of providing care, support, and medication at the point of need, while also imparting information about additional support:\u003c/p\u003e\n\u003cp\u003e\u0026lsquo;\u0026hellip;\u003cem\u003eonce you\u0026apos;ve broken that barrier down and we\u0026apos;ve put the care in, they\u0026nbsp;\u003c/em\u003e[the family] \u003cem\u003ethen take more and more and more because they suddenly realise there is help. Yeah. Yeah. It\u0026apos;s getting through those sort of barriers\u003c/em\u003e\u0026rsquo; (Erin, lines 752-755).\u003c/p\u003e\n\u003cp\u003eTherefore, an important, sometimes unseen, part of the work of the Roaming Car Service, is providing care and support when families need it and when they might not be able to afford carers, and also breaking down family barriers to care provision:\u003c/p\u003e\n\u003cp\u003e\u0026lsquo;\u003cem\u003eAnd that\u0026apos;s quite a lot of our time is spent doing that, is sort of saying, \u0026ldquo;Are you coping? You know. Quite often you can see someone and they\u0026apos;re at the end of their tether and you can tell, you know, and then it\u0026apos;s offering them the other support they can get\u003c/em\u003e\u0026rsquo;\u0026nbsp;(India, lines 757-760).\u003c/p\u003e\n\u003cp\u003eThis trust and positivity appeared to be a feature of the relationships and was also evident in the support provided by the Roaming Car staff to patients and their families, which was apparent in emotional support, signposting, and breaking down the barriers to further support.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eTheme 3: Service delivery\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eWhen discussing the Roaming Car Service, participants felt the strengths and opportunities the service provided also highlighted possibilities for smarter working. Some of these possibilities were around the shift pattern, which participants noted had increased from 10-hour shifts to 12-hour shifts, which they reported as tiring. As a result, driving has to be shared and it is more difficult for bank staff to work these longer shifts:\u003c/p\u003e\n\u003cp\u003e\u0026lsquo;\u0026hellip;\u003cem\u003efor some of us this change to a 12-hour shift, because some of us are on bank, it\u0026apos;s really quite difficult. I feel I can\u0026apos;t do as much as I used to do. I used to be able to fit the smaller shifts in much more, so that I was safe working. I\u0026apos;d had enough rest between one job and going to the other\u003c/em\u003e\u0026rsquo; (Erin, lines 112-116).\u003c/p\u003e\n\u003cp\u003eParticipants also spoke about a smarter way of working to save time, energy, and resources. Erin shared an example when access to a patient\u0026rsquo;s house was delayed because of a combination of IT problems and poor service co-ordination. She managed to contact the out-of-hours service and prove who she was but said that at least half an hour can sometimes be wasted phoning different people and even the NHS 111 non-emergency number to gain access to the house. A more co-ordinated approach to service delivery, with better IT systems and a dedicated support contact can help reduce instances like this.\u003c/p\u003e\n\u003cp\u003eSimilarly, smarter working can lead to better communication and sharing of information through a more co-ordinated approach to information-sharing. Part of this might be having smaller mini bases to account for travelling across a wide geographical area during shifts and sharing information between day and night teams:\u003c/p\u003e\n\u003cp\u003e\u0026lsquo;\u0026hellip;\u003cem\u003ewe\u0026apos;ve been asking for a base in xxxxxx \u0026nbsp;because a lot of our work is there. And if we were based where the DHU, the out-of-hours team are, I think that communication would be much better because they\u0026apos;d be popping into base and we\u0026apos;d be saying, like, right, \u0026ldquo;We\u0026apos;ve gone to Mr. Jones, Mrs. Smith, have you got any-\u0026ldquo; Or I just\u0026hellip;.I feel we could work a little bit better with the nights\u003c/em\u003e\u0026rsquo; (Erin, lines 580-585).\u003c/p\u003e\n\u003cp\u003eIndeed, the longer shifts and large geographical area can result in a lot of driving, which means that there is less time with patients:\u003c/p\u003e\n\u003cp\u003e\u0026lsquo;\u0026hellip;\u003cem\u003eyou can get back to base, travel all the way back, which happened to me from xxxxx. Got back to base\u0026hellip;We unlocked the door, the phone went, and it was back to the same person. So it we spent most of the night in a car travelling up and down\u003c/em\u003e\u0026rsquo; (Erin, lines 627-630).\u003c/p\u003e\n\u003cp\u003eErin also shared how travelling between opposite ends of the geographical \u0026lsquo;patch\u0026rsquo; they cover can take 90 minutes one-way. It is possible that the Roaming Car can travel this journey a few times during a single shift as referrals come in, which means that a lot of time is spent travelling. Participants felt that better organisation, use of additional bases, and more effective communication can help smarter working to allow the Roaming Car to focus on patient care and treatment rather than travelling between appointments.\u003c/p\u003e\n\u003cp\u003eStaff from the Roaming Car Service also felt that out-of-hours services do not always match daytime services and so additional pressures were put on nighttime staff to fill the gaps:\u003c/p\u003e\n\u003cp\u003e\u0026lsquo;\u0026hellip;\u003cem\u003epalliative care is very hit and miss in the community. To be fair, you know, some places do really good\u0026nbsp;\u003c/em\u003e [sic] \u003cem\u003eand some people don\u0026apos;t. You find that, or I\u0026apos;ve found that\u0026hellip;in xxxxx, it\u0026apos;s very hit and miss\u003c/em\u003e\u0026rsquo; (Cora, lines 825-828).\u003c/p\u003e\n\u003cp\u003eCora added that staff only have one attempt to provide the care and so it needs to be right. The patchy service provision provides a particular challenge which is partly out of the remit of the Roaming Car Service but also presents an opportunity for better service provision and delivery and offers the Roaming Car Service a particular input around commissioning to ensure they get provision right.\u003c/p\u003e\n\u003cp\u003eOpportunities for changes in service delivery were also reported in terms of caring duties. Reports of paid carers asleep, on their phone, or leaving the room when Roaming Car staff arrived meant the roaming car is sometimes filling in the role of a paid carer:\u003c/p\u003e\n\u003cp\u003e\u0026lsquo;\u0026hellip;\u003cem\u003ewe went to one the other night. I can\u0026apos;t remember who it was with, and it\u0026apos;s a very nice gentleman\u003c/em\u003e [sic]\u003cem\u003e\u0026nbsp;sat with this guy who was very close to dying, but he sat in a chair in the corner of the room waiting for him to die. Well, that\u0026apos;s not caring\u003c/em\u003e\u0026rsquo; (India, lines 905-908).\u003c/p\u003e\n\u003cp\u003eDespite the difficulties and challenges, participants felt that the Roaming Car Service offers good value for money overall. Care is provided in the home, it is personalised, and is generally more immediate than ambulance care, allowing 999 emergency services to attend the most urgent cases. As a result, there were felt to be more opportunities to develop the Roaming Car Service and highlight the value for money that it represents:\u003c/p\u003e\n\u003cp\u003e\u0026lsquo;\u003cem\u003eExpectations-wise, I think we could probably meet more by visiting more patients and get, you know, and getting it a bit more, like I say, smarter or, like, linking with other roaming services\u003c/em\u003e\u0026rsquo; (Cora, lines 1224-1227).\u003c/p\u003e\n\u003cp\u003eParticipants felt that the Roaming Car Service is beneficial overall and provides an important service, which is good value for money. There are also further opportunities to develop the service, such as exploring ways to work smarter.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eInterviews with carers who are family members\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eFour interviews were conducted with carers who used the Roaming Car service for a relative who has since died. All participants perceived the Roaming Car Service positively, and none identified areas for development or improvement.\u003c/p\u003e\n\u003cp\u003eWhen discussing the Roaming Car Service, the participants recalled that contact with the Roaming Car Service was often made by the GP\u0026rsquo;s surgery, whether directly from the doctor or the nursing staff, or via night caring staff. Carers were usually given a list of phone numbers, which included that of the Roaming Car Service, or the hospice night staff contacted the Roaming Car Service directly to help provide additional support.\u003c/p\u003e\n\u003cp\u003eAs the health of patients deteriorated and their health condition, like cancer, progressed, the Roaming Car Service was introduced. This support was often provided as circumstances became more desperate, such as when patients stopped eating, more medication was needed, or patients needed settling at night:\u003c/p\u003e\n\u003cp\u003e\u0026lsquo;\u003cem\u003eOften, Blythe House would be offering me help and support, literally at midnight and onwards\u0026hellip;And they would come out and they might help with some medication or\u0026hellip;At one point, she was on a pump\u0026hellip; and the pump actually came out. The needle came out. And they came out to help with that and put that back in\u003c/em\u003e\u0026rsquo; (Kasim, lines 87-88, 92-94, and 98-99).\u003c/p\u003e\n\u003cp\u003eParticipants were clear that the Roaming Car Service offered different support to both patients and their family. Kasim explained that the support he received was purely medical:\u003c/p\u003e\n\u003cp\u003e\u0026lsquo;\u003cem\u003eI didn\u0026rsquo;t feel that I needed any, if you like, psychological or social support. It was just when it was a medical issue that I couldn\u0026rsquo;t deal with and they were on the end of the phone\u003c/em\u003e\u0026rsquo; (Kasim, lines 107-109).\u003c/p\u003e\n\u003cp\u003eThis reassurance came in the form of medical administration, information about end-of-life trajectory, and having someone coming in to talk to and share what had happened with.\u0026nbsp;For other carers, like Megan, the support extended to someone to share a cup of tea with. Either way, reassurance was a constant theme in the interviews and this support and care provided by the Roaming Car Service also meant the patient could stay at home where both they and their family felt comfortable:\u003c/p\u003e\n\u003cp\u003e\u0026lsquo;\u0026hellip;\u003cem\u003ethe other alternative [to the Roaming Car Service] was that she\u0026rsquo;d\u0026nbsp;\u003c/em\u003e[my Mother] \u003cem\u003ehave to have to have gone into hospital or a home and she did not want to do that. I mean, she was offered the choice to go into hospital in the latter stages and she didn\u0026rsquo;t want to. And I was glad that the Roaming Service allowed her that opportunity to stay at home in the last couple of weeks. And I think that\u0026hellip;you know, surrounded by her animals and what have you, was a real\u0026hellip;added to her last days of\u0026hellip;quality of her life in the last few months\u003c/em\u003e.\u0026rsquo; (Kasim, lines 450-456).\u003c/p\u003e\n\u003cp\u003eThis was echoed by Brenda when discussing the care, the Roaming Service provided for her Mum:\u003c/p\u003e\n\u003cp\u003e\u0026lsquo;\u003cem\u003eW\u003c/em\u003e\u003cem\u003ehat the Roaming Service did was give you that little bit of comfort\u003c/em\u003e\u0026rsquo; (Brenda, lines 161-162).\u003c/p\u003e\n\u003cp\u003eSupport was often provided in the last few months of life, when situations became acute and frequent practical support or advice was needed quickly. These situations also helped to reassure families that the best and most effective care was being provided in the circumstances:\u003c/p\u003e\n\u003cp\u003e\u0026lsquo;\u003cem\u003eI found it very reassuring, just to have somebody else come in with a different pair of eyes and, you know, pick up on things or identify that she was okay as she was\u003c/em\u003e\u0026rsquo; (Kasim, lines 175-177).\u003c/p\u003e\n\u003cp\u003eAs part of the approach of the Roaming Car Service, good communication helped provide this reassurance and put both patients and their families at ease. Bruce explained how staff were chatty and approachable, which helped to provide effective wrap-around care for his Mother-in-law, consisting of the GP, hospice staff, and night carers, as well as the Roaming Car Service. Similarly, Megan said she felt at ease with the Roaming Car staff:\u003c/p\u003e\n\u003cp\u003e\u0026lsquo;\u0026hellip;\u003cem\u003ethey\u003c/em\u003e [Roaming Car staff] \u003cem\u003emade me feel great. Talked to me. Made me feel like I wasn\u0026rsquo;t mithering, I wasn\u0026rsquo;t a problem, \u0026lsquo;cos I really think I should be able to cope with everything on my own. And to be given that reassurance was a massive thing\u003c/em\u003e\u0026rsquo; (Megan, lines 109-112).\u003c/p\u003e\n\u003cp\u003eThis support and care also extended to verifying the death of relatives, which Megan described made the whole process of care, death, and grieving easier than expected:\u003c/p\u003e\n\u003cp\u003e\u0026lsquo;\u0026hellip;\u003cem\u003eit\u003c/em\u003e [the Roaming Car Service] \u003cem\u003emust save the NHS a fortune, you know, it must, because\u0026hellip;Well\u0026hellip;it was smooth, it was as clear, it was as easy as it could be, the whole thing\u003c/em\u003e\u0026rsquo; (Megan, lines 304-306).\u003c/p\u003e\n\u003cp\u003eThe service was also available very quickly. For example, Kasim spoke about a phone call to the service often resulted in swift attendance, sometimes within 20 minutes and generally in under an hour. This was echoed by Bruce:\u003c/p\u003e\n\u003cp\u003e\u0026lsquo;\u003cem\u003eThey were there as quick as you can be from where, you know, from where the house is compared to where the car would be roaming, you know. It\u0026rsquo;s a way away from known civilisation\u003c/em\u003e\u0026rsquo; (Bruce, lines 581-583).\u003c/p\u003e\n\u003cp\u003eThe immediacy of care was considered better than the NHS 111 service and the care and attention from the Roaming Car Service also allowed for a better death, which, in turn, help the grieving process.\u003c/p\u003e\n\u003cp\u003e\u0026lsquo;\u0026hellip;\u003cem\u003eIt was the Roaming Service that enabled me to have the strength to keep Toby at home and to meet his health needs\u0026hellip;He was calm and \u0026nbsp;he died at 9 minutes past midnight with me next to him in my pyjamas. And, yeah, it couldn\u0026rsquo;t have been more peaceful. And because of that, I was able to cope a lot better\u003c/em\u003e\u0026rsquo; (Megan, lines \u0026nbsp;666-667 and 171-173).\u003c/p\u003e\n\u003cp\u003eFinally, most participants recognised that while the Roaming Car Service was very good and they were pleased with what was provided, it was clear that the service was in its infancy. Both Brenda and Bruce relayed that the service needed to be better promoted. Nevertheless, the combination of what was felt to be a nurse and a non-nurse in the roaming car provided a very good balance of skills and a firm basis on which the service was built.\u003c/p\u003e"},{"header":"Discussion","content":"\u003cp\u003eThis study adds to the growing literature on out-of-hours services particularly in a rural area in England where considerable distances and hard to reach dwellings need to be accessed to provide high-quality end-of-life care to enable individual to die at home. It highlights how a unique Roaming Car service addresses gaps in the provision of support to families in rural areas whilst also revealing the challenges in delivering a relatively new service.\u003c/p\u003e\u003cp\u003eConsistent with prior research pertaining to out-of-hours services for individuals and their families at the end of life (\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e, \u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e, \u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e, \u003cspan citationid=\"CR26\" class=\"CitationRef\"\u003e26\u003c/span\u003e, \u003cspan citationid=\"CR27\" class=\"CitationRef\"\u003e27\u003c/span\u003e) the findings from the focus group highlight systemic barriers due to by a lack of a co-ordinated approach among providers and an initial lack of information sharing as well as mistrust by staff from other providers (\u003cspan citationid=\"CR20\" class=\"CitationRef\"\u003e20\u003c/span\u003e).\u003c/p\u003e\u003cp\u003eThe Roaming Care service aligns with national driven strategies to provide and deliver 24/7, good quality care, and to address inequity in access at least in terms of responding to need in a rural area (\u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e, \u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e). This study\u0026rsquo;s participants comprising family members demonstrated the importance of providing timely and personal and psycho-social care to families at a critical juncture of end-of-life to enable a person to die at home reflecting parallels with elements of the Key Ambitions Framework (\u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e). However, the staff within the service lacked robust IT equipment which amplified the burden on staff who had to travel considerable distances on long shifts to access and support patients and their families. This highlights the need for the service to first be aware of such challenges and second, to up-date IT equipment to sustain the service and to consider hubs in between rural areas (\u003cspan citationid=\"CR31\" class=\"CitationRef\"\u003e31\u003c/span\u003e).\u003c/p\u003e\u003cp\u003eThe evidence while based on a small number of participants points to an out-of-hours service which is viewed favourably. Staffed by skilled professionals (\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e). participants accounts demonstrate what works well. What is unique to this study concerning a Roaming Care service was examples of positive relationships reported by staff and opportunities to learn from one another. None more so than an opportunity to unpack and diffuse from events from the events of a night shift, much like an informal supervision as well as support from the service manager.\u003c/p\u003e\u003cp\u003eWhile the Roaming Car service provides crucial relief, the findings stress the importance of sustainable reforms that support professionals to deliver equitable care in rural areas reinforcing the need to collect data about the service, how it works (\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e) as well as ongoing feedback by families and professionals.\u003c/p\u003e\u003cdiv id=\"Sec11\" class=\"Section2\"\u003e\u003ch2\u003eImplications for policy and practice\u003c/h2\u003e\u003cp\u003eThe study findings demonstrate the contribution of the Roaming Car service and the support that skilled professionals provide to enable people to die at home especially in rural areas. Yet, it also highlights the limitations in a service that operates with some limited resources compared with other providers. While greater integration with the NHS, social and health care enable an integrated way of working to overcome the challenges described, this has at times proved to be an elusive goal. Given that the service is relatively new, greater promotion of the Roaming Car service and what it provides and to whom as well as the routine collection of data could enhance its sustainability in the longer-term.\u003c/p\u003e\u003c/div\u003e\u003cdiv id=\"Sec12\" class=\"Section2\"\u003e\u003ch2\u003eLimitations and future research\u003c/h2\u003e\u003cp\u003eThis study focuses on the experiences of a small number of participants who use an out-of-hours service specifically developed to provide support and care in rural area with hard-to-reach dwellings. The experiences derived from a small sample may not reflect the experiences of carers who use the service more widely. The small sample is reflective of the changing role of carers and where they live post death such that they no longer resided at the address where they undertook a caring role at the time of the study. One way to mitigate this is to include participants who use the out of hours service while actively caring. However, this may be a burden in terms of a carers psychological resources and focus on care at the end-of-life. Similarly, recruitment of staff to the focus group was limited due to availability of staff and interviews may have yielded greater participation.\u003c/p\u003e\u003c/div\u003e"},{"header":"Conclusion","content":"\u003cp\u003eThis study highlights the contribution of an out-of-hours service for patients and families at the end-of-life living in rural areas. It also identifies the challenges experienced by skilled health professionals in realising the aim of the service to meet the key Ambitions for palliative care and end of life care: a national framework for local action 2021\u0026ndash;2026. While there is clear commitment in providing high-quality personalised care, the findings emphasise the importance to respond to inadequacies which hinder the delivery of such care. Developing locally driven solutions by raising awareness of the service, supporting hubs to operationalise equipment can support the development of a service which specifically addresses the needs of rural communities.\u003c/p\u003e"},{"header":"Declarations","content":"\u003cp\u003e\u003cem\u003eEthics approval and consent to participate\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eThis study was approved by The Open University Human Research Ethics Committee, 0438. All study procedures adhered to the World Health Organization’s Declaration of Helsinki.\u0026nbsp;Informed consent to participate was obtained from all of the participants in the study.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eConsent to publish\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eN/a\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eAvailability of data and materials\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eAll data generated or analysed during this study are included in this published article. Supplementary file documents focus group topic guide and interview research schedule have been included.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eCompeting interests\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eThe authors declare no potential conflicts of interest with respect to the research, authorship and or publication of this article.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eFunding\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eThe study was supported by The Open University’s Research Development programme\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eAuthors' contributions\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eKJ conceived the idea for the study, wrote the main background, methods section, discussion, conclusion, limitations and implications sections. BH analysed and wrote the results rection. Both authors reviewed the manuscript.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eAcknowledgements\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eThe authors would like to thank the staff from the hospice and Trust who supported this study and the participants who shared their experiences.\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\n\u003cli\u003eBone AE, Gomes B, Etkind SN, Verne J, Murtagh FEM, Evans CJ, et al. What is the impact of population ageing on the future provision of end-of-life care? Population-based projections of place of death. Palliative Medicine 2018; 32: 329\u0026ndash;336. \u003c/li\u003e\n\u003cli\u003eEtkind SN, Bone AE, Gomes B, Lovell N, Evans J, Higginson IJ, et al. How many people will need palliative care in 2040? Past trends, future projections and implications for services. BMC Medicine 2017; 15: 102. \u003c/li\u003e\n\u003cli\u003eSleeman KE, de Brito M, Etkind S, Nkhuma K, Guo P, Higginson IJ, et al. 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International Journal for Equity in Health. 2024; 23, 248. \u003c/li\u003e\n\u003cli\u003eBarker J. P-211 Lessons in End-of-Life commissioning: a brave move? BMJ Supportive \u0026amp; Palliative Care. 2021;11: A85. https://doi.org/10.1136/spcare-2021-Hospice.\u003c/li\u003e\n\u003cli\u003eHarrop E, Goss S, Farnell D, Longo M, Byrne A, Barawi K. et al. (2021) Support needs and barriers to accessing support: Baseline results of a mixed-methods national survey of people bereaved during the COVID-19 pandemic. Palliative Medicine. 2021; 35, 10: 1985-1997.\u003c/li\u003e\n\u003cli\u003eColdrick C, Crimmons K. Family members\u0026rsquo; and carers\u0026rsquo; perceptions of palliative care provided by district nurses. Primary Health Care. 2019; 30. \u003c/li\u003e\n\u003cli\u003eAttride-Stirling J. Thematic networks: an analytic tool for qualitative research\u003cem\u003e. \u003c/em\u003eQualitative Research. 2001; 1, 3: 385-405. \u003c/li\u003e\n\u003cli\u003eBaxter P, Jack S. Qualitative Case Study Methodology: Study Design and Implementation for Novice Researchers. The Qualitative Report. 2008; 13, 4: 544-559. \u003c/li\u003e\n\u003cli\u003eYin RK. (2014). Case Study Research Design and Methods (5th ed.). Thousand Oaks, California: Sage. 2014.\u003c/li\u003e\n\u003c/ol\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":false,"hideJournal":true,"highlight":"","institution":"","isAcceptedByJournal":false,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"researchsquare","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":true,"externalIdentity":"","sideBox":"","snPcode":"","submissionUrl":"/submission","title":"Research Square","twitterHandle":"researchsquare","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"","reportingPortfolio":"","inReviewEnabled":false,"inReviewRevisionsEnabled":true},"keywords":"palliative care, rural population, out of hours, hospice, carers, health professionals","lastPublishedDoi":"10.21203/rs.3.rs-7934424/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-7934424/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003ch2\u003eIntroduction\u003c/h2\u003e\u003cp\u003eDemand for community-based palliative care has increased alongside prevalences of multi-morbidities, long-term life limiting illnesses, and an ageing population. Evidence suggests most people would like to die at home, and policies and frameworks in England have focused on the development of local services and supporting the provision of end-of-life care at home. Nevertheless, provision of out-of-hours palliative services remains patchy, which is exacerbated by the co-ordination of care services and inequity of care provision for patients in rural areas. However, a gap still exists to understand the effectiveness of these services and how they can be better utilised to support the population.\u003c/p\u003e\u003ch2\u003eAim\u003c/h2\u003e\u003cp\u003eThis study reviewed an out-of-hours nurse-led roaming car service, which was run and delivered by a hospice to support palliative care patients and their carers\u0026rsquo;. As part of this, the study identified what currently works when delivering the service and the challenges faced to provide the service.\u003c/p\u003e\u003ch2\u003eMethod\u003c/h2\u003e\u003cp\u003eThis was a qualitative retrospective study to collect data from both carers and health professionals who delivered the service. Carers were interviewed individually using semi-structured interviews and the health professionals were invited to join a focus group. All data was collected online via Skype and data were analysed thematically.\u003c/p\u003e\u003ch2\u003eResults\u003c/h2\u003e\u003cp\u003eFrom the focus group with health professionals, three themes identified were: challenges in communication; opportunities to improve service delivery and identifying what currently works; and service delivery and opportunities to work smarter. Interviews with carers did not reveal clear areas for service development but were useful to identify how contact began with the roaming car service, when intervention from the service was beneficial, and the support and reassurance the service provided.\u003c/p\u003e\u003ch2\u003eConclusion\u003c/h2\u003e\u003cp\u003eThe out-of-hours service provides an important contribution to the care and support for patients and their carers\u0026rsquo; in rural areas during the end-of-life phase. There is a clear commitment from the service to meet both policy and the needs of patients and their carers\u0026rsquo; as part of the delivery of a high level of care. Key challenges for service delivery were also identified to continue to address patient needs in rural areas.\u003c/p\u003e","manuscriptTitle":"Out of hours palliative care in a rural area in the Midlands, England: a qualitative study of carers, caring for family members at the end of life and professionals","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2025-12-11 13:05:35","doi":"10.21203/rs.3.rs-7934424/v1","editorialEvents":[{"type":"communityComments","content":0}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"researchsquare","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":true,"externalIdentity":"","sideBox":"","snPcode":"","submissionUrl":"/submission","title":"Research Square","twitterHandle":"researchsquare","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"","reportingPortfolio":"","inReviewEnabled":false,"inReviewRevisionsEnabled":true}}],"origin":"","ownerIdentity":"8041c7c3-351b-476a-bb65-f38f9c6f3557","owner":[],"postedDate":"December 11th, 2025","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"posted","subjectAreas":[],"tags":[],"updatedAt":"2026-01-07T08:40:17+00:00","versionOfRecord":[],"versionCreatedAt":"2025-12-11 13:05:35","video":"","vorDoi":"","vorDoiUrl":"","workflowStages":[]},"version":"v1","identity":"rs-7934424","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-7934424","identity":"rs-7934424","version":["v1"]},"buildId":"XKTyCvWXoU3ODBz1xrDgd","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}