Qualitative results from the case studies

This chapter presents findings from the qualitative data collected in the case studies. We first describe the sample of interview respondents. Next, we introduce the initial programme theories; revised programme theories are then presented, followed by detailed CMO configurations. The inter-relation between the CMO configurations is illustrated diagrammatically.

Sample

A total of 143 interviews were conducted (see Appendix 26, Tables 90 and 91). Two of these were group interviews with two interviewees at a time, and three individuals were interviewed twice (once at the start of phase 2 data collection and once around the time of the site closing to recruitment to find out about substantial changes). All sites that were in the study for > 1 year had follow-up interviews conducted. Interviews comprised:

• nine interviews with 10 commissioners (including one interview with a pair)
• 58 interviews with carers (including one in which the carer provided a written response)
• 76 interviews with 75 service providers (three of whom were interviewed twice and four of whom took part in interviews as a pair); this group of interviewees included front-line staff (HCAs, nurses), middle management (e.g. HAH leads, volunteer co-ordinators, fundraising managers), senior managers/executives (e.g. chief executives and trustees) and HAH volunteers.

Full carer interviewee details can be found in Appendix 27. Carer gender proportions were 63.2% female and 36.8% male; the average carer age was 63.4 years, with a minimum of 29 years and a maximum of 88 years (age was unknown for two carers).

Illustrative quotations indicate the site (i.e. A = Acacia, C = Camellia, D = Dahlia, E = Echinacea, G = Gardenia, H = Hyacinth, L = Lavender, M = Marigold, P = Peony, V = Violet, W = Wisteria and X = Xyris), role (C for carer; Comm for commissioner and SP for service provider) and each interviewee’s unique identifier. For example, PC03 refers to the third carer we interviewed in the site Peony; EComm01 refers to the first commissioner interviewed in the site Echinacea. For service providers, their exact role is provided in brackets, for example CSP01 (trustee). Site summaries and patient flow diagrams for each site aided analyses, and can be seen in Appendix 28, Figures 34–45.

Initial programme theories

Our initial programme theories were developed through the literature review18 and the national HAH standards detailed in Chapter 2. We drew on NPT to provide a theoretical understanding of how HAH services might be embedded within a local EOLC economy. Results from the phase 1 survey were also used to shape initial programme theories. With stakeholder input, we developed seven iterations of eight CMO configurations before articulating the final programme theories (see Appendix 29).

As described in Chapter 3, the initial programme theories were tested in the case studies. We used them to guide interview questions and as a basis for monthly qualitative data meetings. These involved field researchers Claire Butler, Patricia Wilson and Charlotte Brigden, and Graham Silsbury and Mary Goodwin as the lay co-applicants. All transcripts were scrutinised to refine the existing CMO configurations, or to suggest further causal mechanisms. The final version of CMO configurations was then presented at two national consensus workshops, for verification and endorsement.

Final programme theories

From the initial eight CMO configurations, the final iteration comprised six CMO configurations (see Appendix 30 for the full CMO configurations, Tables 92–97). From these, we propose the following final programme theories.

Sustainability

Hospice at home services exist in an environment in which there are constantly changing funding arrangements and commissioners, and an increasing requirement for data to provide evidence to support commissioning. There are also local and national shortages of health and social care staff, alongside a national drive towards care at home. For sustainable, longer-term funding within this context, a HAH service needs to proactively seek control over available statutory funding; engage with the wider health and social care environment; and, if a charitable organisation, undertake fundraising and income generation from a range of sources. To recruit and retain staff to deliver the care that patients need, a HAH service requires a reputation for excellence and for investing in staff development, and will need to alter skill-mix profiles in response to local workforce shortages.

Volunteers

Workforce shortages and the willingness of many people in the local community to volunteer makes the volunteer workforce attractive to H&PC organisations. Changing societal norms around family and community structures have affected the social networks of many patients and carers, with demand on carers compounded by HAH services’ limitations in providing longer periods of input. Although a volunteer workforce could result in extending this period of care, HAH services need to effectively recruit, train and manage volunteers, including providing clear responsibilities, support and lines of reporting. However, to reduce the bureaucratic burden, the HAH service may take a different approach to some aspects of volunteering, along the lines of the Compassionate Communities model120 in which volunteers act as good neighbours.

Integration and co-ordination

Services across the whole system commonly act in silos, resulting in both duplication and gaps in services received by patients. This is compounded by a limit to services, funding and workforce. In addition, issues of professional ownership of EOLC are at play, and organisations seek their own branding and distinctiveness for sustainability purposes. Patients in the last phase of life often have unpredictable needs, at times that are difficult to anticipate. Some patients and carers will not know when to ask for help or who to contact. The HAH service needs to work in a co-ordinated and effective way with other service providers. This may be through a blended service without hard boundaries around roles or services, a secondment to a different setting that facilitates integration, or an agreed division of labour between services. If patients and carers are provided and updated with information, including who and how to contact professionals, then the chances of them receiving a seamless service and continuity of care with consistent information increase.

Marketing and referral

There is a complex system of health and social care providing EOLC for patients in the community. Furthermore, hospice services are often thought of as a building, and there is less understanding of HAH services. HAH functions in a society in which there is a fear and stigma around death and dying (particularly in some communities), with potential referrers reluctant to have conversations with the patient regarding prognosis. To increase referrals in general, and in particular of those who are poorly represented in hospice services, HAH needs to actively market its service to professionals and the public through clinical and public engagement. Referral systems need to be as simple as possible and not require complex transfers of information.

Knowledge, skills and ethos of care providers

Although all health and social care workers should have basic knowledge and skills in EOLC, sometimes these are lacking, including a lack of confidence in communicating at the end of life. For some patients, basic skills may not be adequate to meet their difficult or complex needs. Palliative care and EOLC have developed into specialty area of knowledge, skills and ethos, and this distinctiveness is prized by HAH organisations. However, much of this expertise still resides in cancer care, meaning that patients with other illnesses, such as dementia, may present challenges to staff and organisations. Some services (HAH and non-HAH) may also lack the time to offer personalised and patient-led care, and commissioners may prioritise equity of access across the population, rather than time and expertise. To add value to the whole system of care, HAH services need to provide expert knowledge and skills in EOLC with a suitable ethos to support this care. This is enabled by experienced staff who have spent a significant proportion of their time in EOLC so that patients and families trust them. Staff at all levels, including volunteers, are suitably trained, including appropriate communication skills, so that they can create an environment in which patients and carers have confidence and feel that they are in expert hands. HAH services value the time to offer personalised patient-led care, leading to better patient and carer experiences and sense of agency.

Support directed at the carer or patient–carer dyad at home

Unpaid care provided by family and friends is critical to enable patients to remain at home. How the patient and their informal carer, as a unit in the home, feel about dying at home and respond to the challenge of this situation will be key to achieving death at home. The carer may require confidence and new skills to enable them to provide care up to and including the point of death at home. In bereavement, there may be short- or long-term consequences of caring on the carer’s mental and physical health. However, there is a concern about medicalising bereavement, which is a normal process.

A full assessment of care needs including the whole family/care unit is required. The HAH service fully informs the carer about what might happen in terms of the trajectory of illness and the increasing burden of caring over time. Carers will then know what to expect and can rapidly recognise a change in caring situation from control to crisis. If carer and patient choices are affirmed and supported whenever possible, the carer and patient have an increased sense of control. The HAH service should negotiate a partnership with the carer, including clarity about what can and cannot be provided, and recognition of what the patient–carer dyad wants. Pre-and post-bereavement support is based on relationship and understanding of the situation, and a shared story of caring for the patient. In addition, those not experiencing normal bereavement need to be recognised and additional help made available. This should not rely on self-referral and the timing may be many months post bereavement.

The relationship between these six programme theories is illustrated in Figure 15.

FIGURE 15 Relationship between programme theories. (Figure not reproduced here; see the original article.)

An analysis of the data supporting each CMO configuration will now be presented. Data will be presented from interviews, and feedback from the consensus workshops.

Keeping it going

The first group of CMO configurations is concerned with how services ensure longer-term viability to ‘keep the service going’. The way individual services have developed these functions is often closely related to the history and the setting of the HAH service in its locality.

Sustainability

The CMO for this configuration is shown in Box 2.

Funding

Ensuring sustainable funding to enable the long-term viability of the service was a major concern for all the case studies. This challenge was further complicated by frequent changes of commissioners, with very few in post long enough to develop a good understanding of palliative care and EOLC services, including national initiatives. In contrast, having an established relationship with a commissioner was beneficial:

. . . we’ve been quite open and honest with each other and from my point of view I think it’s helped, having me consistently be involved with them. I think if you had a number of commissioners over a number of years, which other CCGs [Clinical Commissioning Groups] have had to contend with, you’ve just got to rebuild relationships every time.

One commissioner also highlighted that the relationship was easier with smaller HAH services:

It feels like a particularly open relationship . . . they’re not a big provider for us, . . . so I guess that the risk perhaps isn’t there, so that that relationship can develop in that way for that reason.

For commissioners, the challenge was keeping up with the constant pace of change:

. . . commissioners are permanently chasing their tail doing 100 brand new projects that NHS England have imposed and there’s much less time to actually think about, you know, the next 1/3/5 years of local services because there’s just, you know, there’s so much change all the time.

In addition, the landscape of change did not have EOLC as a priority:

. . . it’s just not a priority at the moment with everything else that’s going on, the transitions that’s happening around CCGs merging and things like that.

Many of the sites also expressed a concern that commissioners may not recognise the full cost of what they are commissioning, not recognising that charitable funds were significantly supporting the service. Paradoxically, there was also the perception that fundraising was compromised by a public perception that HAH was substantially supported by statutory funding.

Case studies had taken different approaches to ensure sustainable funding. Many proactively presented a business plan, continually selling it to commissioners, or the HAH service simply took the lead and provided services. In all examples, this was facilitated by a board of trustees or an executive leader with a known reputation for excellence, resulting in being trusted by commissioners to use the funding well. Having a trustee who was closely linked with NHS commissioning was particularly beneficial:

. . . hopefully through my influence as clinical chair of the Commissioning Group, is to increase the amount of funding we have provided for hospice at home.

This sense of trust was often matched by light-touch scrutiny. However, feedback from the consensus workshops highlighted that, although light-touch scrutiny may be welcomed, reputation and trust were also enhanced if commissioners had a greater understanding through scrutiny of the quality of care the service was delivering.

In the early months of fieldwork, one case study site had taken on a lead provider role, subcontracting work to other providers in the area:

. . . we subcontract some bits to [another charity]. . . . I think there’s certainly efficiencies to be made.

Other case studies were also considering this model. The disadvantage of this approach was that there were variations in quality and access from different providers. This, in turn, became a new context whereby the HAH service was forced to set standards and manage contracts, similar to taking on a commissioner role. Feedback from the consensus workshops suggested that there was a possible negative reputational impact of this. In later phases of fieldwork, this approach had been rejected by case studies previously contemplating it because of the possible negative impact on collaborative partnerships with other local providers. Although a shared caseload may allow the most appropriate staff and services to be deployed, and create economies of scale and efficiencies, corporate identity may be diluted, which could have a negative effect when competing for funding (this information was gathered at the consensus workshops).

Accepting a block contract from commissioners to enable predictability of the funding available was another approach used by services. These were seen by commissioners as representing very good value for money:

. . . it was quite clear from all of the information we got back that [hospice name] were by far the best provider, they offered us the best value for money, they had all of the schemes and initiatives already established, they had staff working in the area . . . so on that basis we awarded them a contract.

However, these contracts often lasted only 1 year at a time, which was not long enough to adequately sustain services and did not encourage innovation. Capacity, demand and community priorities often outpaced the duration of the contract cycle. An alternative approach used by several case studies was to secure NHS Continuing Healthcare (NHS CHC) funding to provide or part-fund services. However, this may result in inequities, particularly if some NHS CHC packages are topped up, or, conversely, it may result in rigidity of service when providing only what is funded by NHS CHC in terms of amount of service and duration of service:

The difficulty we have with our HAH service and we’ve had twice recently is where people need HAH but they’re not at the stage of their illness where they’re eligible for continuing fast-track funding. Then we have a dilemma because the size of our services versus the need, . . . we would be showing inequality if we were taking on people who were not funded through Continuing Healthcare in place of people who were.

It was uncommon to find services accepting funding for elements of service from personal health budgets. Overall, patients and families towards the end of life struggled to manage this process. There was some concern at the consensus workshops that the use of personal health budgets may result in actual or perceived inequities, in which preferential treatment may drift towards those who pay.

There were a few examples of HAH services accepting other NHS funds to support HAH, but this came with a requirement to deliver other non-palliative care roles, such as OOH urinary catheter replacements. Although case studies using this approach justified positive outcomes as building professional credibility and relationships, feedback from the consensus workshops identified concerns around maintaining competencies, the loss of specialist palliative care skills and the potential to squeeze out available resources for EOLC.

One case study had developed income-generating care services, which subsidised elements of HAH service provision:

. . . the care agency is a separate organisation to the hospice, but it’s a sister organisation so it’s very close-working in the sense that it’s a social enterprise, so any profits that the agency make completely come 100% back into the hospice.

This element of privatisation of care could lead to availability being only for those who can afford to pay and may cause dissonance with the charitable ethos (this information was gathered at the consensus workshops).

Finally, to manage public assumptions that HAH is significantly funded by the NHS, and hence does not require charitable donations, there was some evidence that hospice charities may not be fully transparent about their access to statutory funding, to make their fundraising activities more effective. Although this may simplify information about complex funding and charitable arrangements as a public message, there was the potential risk of harming reputation if transparency was not maintained (this information was gathered at the consensus workshops):

One of the things that we are hoping is that our providers and hospices will get to a point where they’re willing to be more financially transparent with each other about the level of funding that they’re receiving from commissioners and the level that’s coming from charitable donations or other income.

Overall, being a smaller provider necessitated working with other local services, although how this linked to sustainability varied. Strategic direction for sustainability was exemplified in one smaller provider by a focus on its relationship with other providers, in particular with the local NHS trust. This had resulted in a meshing of NHS community nursing services with the HAH service in providing a rapid-response team:

We are fortunate that our rapid-response service actually is a combined service with the community health team who also provide the district nurses, so therefore we forged a really strong relationship with the district nursing teams.

Hospice at home staff held honorary NHS contracts, and were able to deliver some elements of care outside the end of life, such as catheterisation. Perceived benefits of this blended model included the upskilling of community nurses (through working with experienced HAH staff) and earlier identification of patients who would need EOLC in due course. In addition, for this HAH service, one of the main anticipated benefits was increased visibility and having a presence on the strategic agenda for local care provision. However, this investment in the outward-facing focus, on external relationships, may have resulted in losing inward focus and investment in the service. For example, staff motivation to strive for self-development was questioned. In contrast, another site worked closely with community nurses at the care level, but there were more concerns about sustainability at this site because of its difficulties in having a ‘seat’ at local provider strategic meetings. Nevertheless, this small provider exhibited several positive benefits of being an inward-facing organisation, including high staff morale and fewer issues in recruitment and retention. This need to have effective outward- and inward-facing investment and relationships for sustainability is explored further in Chapter 8.

Staffing

The need to recruit and retain staff was set against a backdrop of local and national health and social care staff shortages. As mentioned earlier, inward-facing organisations often had a focus on investing in staff through continuing professional development (CPD). They also tended to be organisations that deployed staff in preferred areas of work with the necessary skills training. In contrast, some services needed to adapt their skill-mix profiles in response to local shortages, particularly RNs. In some cases, this led to RNs being solely office based, or non-registered staff taking on roles previously held by RNs:

. . . there’s such a lot of training available now and opportunities for non-registered general nurses, I think we need to think more about that. Not just to be able to give our non-registered nurses the opportunity to develop, but also because the pool of registered general nurses has become so difficult to recruit.

However, this was not without its problems:

. . . I think it’s a bit embarrassing when you’ve got to, you know, wait for a district nurse to come and give medication. But a lot of hospice at home staff are not qualified nurses so I get that.

The reputation of a HAH service proved a strong magnet for attracting staff. This pull was created by either the reputation for staff investment or the HAH (or its leader) having a reputation for excellence:

I think it’s a popular service to work in and . . . so certainly in my experience it’s never been a problem with patients accessing the service because of difficulties with recruitment or retention or whatever.

Although this success in recruitment and retention was welcomed by the HAH service, there was the potential to have a negative knock-on effect through depleting the workforce in other parts of the local health and social care system.

National policy

There is a national drive towards care at home, which is clearly linked to the discourse of enabling patient choice. However, it was also recognised that care at home offers a potential cost-saving, and the argument for commissioning HAH was underpinned by both rationales:

. . . by far the best value for money because there’s no overheads . . . often the family are the carers as well, which means that you don’t necessarily need to staff them like you would an inpatient bed . . . Hospice at home is probably by far the most effective model.

The reality in all the case study sites was that hospice beds were a relatively scarce resource and the provision of HAH was one way of meeting that gap. Commissioning decisions were inevitably influenced by economic factors, alongside a desire to reduce inequalities in EOLC:

. . . there are big gaps all over the place for people who are dying at home . . . you know, when you look at the landscape, there are a lot of incredible Rolls Royce services being delivered in hospices and then there are a lot of very patchy, very much less good services being delivered for people that choose to be at home.

For most of our patient and carer participants, HAH brought high-quality care to the place where patients and carers wanted to spend their last days together. However, for some patients and carers, this drive towards care at home led to a sense of obligation to manage dying at home that they found difficult. Preferences can change and there was a need for HAH services to explore and revisit the wishes of patients and carers over time.

Data and evidence

To support decisions about sustained funding, NHS commissioners and charity boards required data to be collected:

. . . it was a matter of persuading the board that it would be cost effective . . . then it was quite a hard sell at commissioner level because the perception was, ‘well we’ve got a service already, we’ve got district nursing, we’ve got primary care, you know, we’ve got a hospice if need be for patients to go in, why would we need hospice at home . . ., what’s the added value of it for the money we’re going to have to put in?’.

This resulted in huge numbers of activity data being harvested, but with very little outcome and very few cost–benefit data (such as avoided hospital admissions). Hence, the usefulness of activity data was questioned and the consensus workshop also confirmed the sense of frustration felt by staff, with a consequent resistance to collecting the data. However, larger providers with 24/7 services (model 1) were more orientated to a data collection culture, and had sought to address data utility:

We’ve done a piece of work with the commissioners where . . . we can give NHS numbers to them, so all through the proper data-sharing agreements. They can then do analysis on the admissions to hospital . . . so we can say, ‘yes, we’ve avoided hospital admissions . . .’.

Keeping the work of the HAH service going could also potentially be supported by volunteers.

Volunteers

The CMO for this configuration is shown in Box 3.

Although many carers had friends and family to support them, we found evidence of increased carer burden when little social network support was available. Some carers would have greatly valued more support from someone to provide longer breaks:

. . . the length of time that they said they [HAH paid staff] could do it for was not helpful at all . . . there’s not a lot you can do in 2 hours . . . if I’d had to catch the bus, I would have literally have had enough time to run into the chemist, get the prescription and come home.

However, because HAH services were predominantly focused on the patient rather than the carer, the rapidly escalating health-care needs of the patient and the requirement for skilled hands-on care to meet these needs, many HAH services did not see a potential role for volunteers to support the patient in their own home. One volunteer organiser was aghast at a potential volunteer role in providing physical care:

. . . I was a bit, um, instantly gut reaction adverse to that idea that they would have health-care assistant roles as well . . . it would be ‘oh somebody might need to be fed or got up in the morning’ and that’s not what the volunteers want to do . . .

For volunteers, the length of time to develop a relationship with a patient and family was important, which was unlikely to be available in some of the HAH services when contact was only in the last few weeks of life:

. . . the longer that relationship goes on, then the more that person relies on you . . . it would seem that the patient gets a great deal of benefit out of my visiting.

Nevertheless, although some carer interviews suggested that it was more befriending or ‘errand-running’ that would have helped, one of the case study sites did have volunteers providing hands-on physical care. This site ran an adult care certificate programme for volunteers. Training included personal care and symptoms to look out for, and initial experience was gained in the inpatient unit. A volunteer interviewee described how they were asked to consider providing respite care in a patient’s own home. With no previous experience in health or social care, the volunteer describes how they:

. . . have been trained on how to, if they’ve had a bowel accident or something, I know what I need to do. I’ve also been trained on suction because a couple of patients can’t swallow, can’t do anything, so they’re at risk of choking, so I’ve been trained on how to clear the throat.

The volunteer provided 2 hours of respite care every other week. They described their role as taking a referral with minimal information; preparing for the visit, which included trying to glean knowledge about the patient’s interests; and doing basic care, if necessary. The volunteer was also able to double up with a HCA for HAH visits. The volunteer described their remit as being a friend to the patient and carer, giving the carer a break and freeing up skilled staff.

When interviewing the commissioner for this case study site, they felt that the volunteers were an essential part of the service as it made ‘the money stretch’. However, as the service was contracted by the CCG, they needed to be sure that volunteers were adequately trained and appraised, which led to a cost for the service. Added to this were concerns from the site on the challenges of managing a workforce that was not in an official contract with the organisation:

. . . you are beholden to volunteers that have, you know, they’re not contracted to us, they can go on holiday whenever they please and they can go away for 6 months if they want to . . .

However, this hands-on volunteering role was often a very positive experience for volunteers and had led some to a career change, as described by a HCA who, from an unrelated work background, had started volunteering in the hospice after experiencing hospice care for a relative, completed the care certificate and eventually became a full-time HCA.

Volunteers who had previously been health or social care professionals were particularly valued. Examples of this role included advance care planning with patients, and being used in bereavement support services:

Fifty-odd volunteers offering bereavement support . . . we have quite a few that have been nurses in the past and things like that . . . you are obviously retired from that role but then come back as volunteers.

Although volunteers were used extensively in bereavement services, we found little evidence that carers found this particularly helpful. What they desired most was to keep some contact with HAH care staff with whom they had developed a close relationship during difficult times (discussed further later in this chapter).

One case study site was notable for the range of community-based volunteer roles provided; these included:

• hospice neighbours – social support provided early on during the palliative phase
• carer companion – provided later on during EOLC, with the relationship extending up to 3 months post bereavement
• bereavement support volunteers – 10-day training provided; volunteers –
  • delivered one-to-one bereavement support for up to 6 weeks; each volunteer has a maximum caseload of three bereaved carers
  • facilitated monthly support groups
  • participated in ‘walk and talk’
  • attended early bereavement cafes.
• discharge buddies – supporting patients discharged from the inpatient hospice
• CCG/hospice hub volunteer – particular remit to draw up advance care plans with patients not in the EOLC phase
• compassionate neighbours – facilitating a more natural friendship than the more purposeful hospice neighbours:

. . . compassionate neighbours . . . the expectation is that you visit someone for about an hour a week, that you would spend time with them that way. But the idea of a compassionate neighbour . . . it’s like generating genuine friendships and connections . . .

At this site, volunteering was perceived as innovative, was embedded within policies and was facilitated by a volunteer manager. However, there were challenges. In addition to the resource implications of managing and training the volunteer workforce, one of the biggest issues was ensuring that volunteers kept within boundaries:

. . . I think sometimes people feel for themselves as a volunteer that it’s different to a member of staff, which of course it is, but it doesn’t mean that boundaries are different. But I think people think ‘well it’s OK for me to because I’m a volunteer’, well it’s not actually . . . you’re a representative of an organisation.

The potential benefits and challenges of volunteers were also expressed by sites considering developing their volunteer workforce. One respondent from a site felt that:

. . . there’s an untapped resource we could use there and so many of our volunteers have the skills that could be developed into the clinical development . . . clinical volunteer role . . . so it is something we would like to develop.

In contrast, another respondent from the same site expressed:

. . . there’s a risk to our reputation that if we put volunteers in doing respite in someone’s house and that patient became soiled, that actually that volunteer can’t deal with that, and then that we’re kind of leaving a patient suffering . . . the boundaries would need to be very, very clear before we introduced volunteers.

This tension between recognising a potential volunteer role in the last days of life and seeing any benefit of this role outweighed by potential risks was amplified in the consensus workshops. Although there was acknowledgement that the volunteer workforce has ‘huge potential’, the risks to the reputation of the employing organisation were frequently mentioned. Concerns centred on governance and health and safety, and maintaining the fine balance in ensuring that boundaries are clear and adhered to, versus allowing natural responses of compassion and empathy that underpin much of the motivation to volunteer. These issues were prevalent in the case studies, illustrated by this caveat on using volunteers to assist physiotherapists:

We’ve already assessed the person at home and they say ‘I would like a Zimmer frame’ [Zimmer Biomet Holdings, Inc., Warsaw, IN, USA], so then the volunteer would go out and give them a Zimmer frame and just check that they’re all right with the height, etc. . . . we’re looking into that, but obviously we’ve got to look at the insurance side of it.

Commissioners appeared aware of the potential benefit of volunteers, but cognisant of less formalised approaches to quality monitoring:

. . . we would expect to see certain training needs met, appraisals being done, that sort of thing and that’s not always the case with volunteers, so I think our safety and quality team are working with them to try and come up, like, with a meet-halfway-type scenario. . .

This ambiguity and tension within the volunteer role will be explored further in Chapter 8, but realising the potential of a volunteer workforce could, quite clearly, contribute to the sustainability of the HAH services. As shown in Figure 15, it also straddles the next group of CMO configurations, ‘doing the work’, and has the potential to positively affect carer burden.

Doing the work

The second group of CMO configurations is concerned with how services operate on a day-to-day basis to ‘do the work’ of delivering HAH. The ways individual services have developed these functions were linked to how the wider health and social care economy functioned locally, as well as to the history and ethos of the HAH service itself. The first of these CMO configurations, integration and co-ordination, straddles the intersection of the previous group of CMO configurations (keeping it going) as it also contributes towards sustainability.

Integration and co-ordination

The CMO for this configuration is shown in Box 4.

National perspective

National policy and strategic direction affected integration and co-ordination, particularly through their influence on commissioners and commissioning practices. One commissioner expressed a view at the consensus meeting that HAH organisations in general were not in a state of readiness to participate fully in collaborative commissioning.

Hospice at home organisations that keep a close eye on national policy could capitalise on or anticipate the impact of this and plan their local strategies for integration, co-ordination and, thereby, sustainability accordingly. Some case studies invested substantial effort in this (see Sustainability above and Chapter 8, Sustainability, which explores outward- vs. inward-facing organisational focus).

Service perspective

Hospice at home services commonly formed part of a hospice organisation, often a charity, which was providing other palliative care and EOLC services. Even the largest hospice organisations were relatively small players in local health and social care economies, but many were small or very small provider organisations, which often triggered a focus on developing partnerships with other providers. Some of these smaller services had worked hard to become involved in commissioning decisions:

. . . we make sure we always inform them what’s going on, we make sure that we write in the notes, we communicate, if we’ve been out to see a patient we would phone the district nursing team and talk to them if we’ve got any concerns . . . then we have the quarterly meetings where we all get together and talk about if we’ve got any issues. And then either, as the lead within the service, would go to the end-of-life community meetings within the trust, so that we’ve got that strategic-level conversation that’s ongoing.

Good-quality integration and co-ordination at the service level were not automatically straightforward and required a considerable investment of time and effort. We found examples of a range of strategies employed by HAH services to enhance integration and co-ordination.

A ‘blending’ approach between services

Different services can provide what is needed by a patient without hard boundaries between services via several strategies, for example:

• joint posts, for example consultants working across settings/organisations; honorary contracts with the NHS were emblematic and may facilitate this
• shared clinical records/information technology (IT) systems (this was not common)
• a whole range of collaborative hub, co-ordinator and single-point-of-access arrangements
• systems to facilitate communication and reduce bureaucracy between services.

Building relationships

• Joint clinical visits, regular meetings between clinical colleagues from different services (e.g. primary care end-of-life meetings).
• A secondment to a different setting (e.g. a health-care worker into social care) may facilitate integration by the ‘learning of another language’ (dependent on workforce availability).

Agreed ‘division of labour’

• Community nurses provide and administer all anticipatory medications.
• The HAH service is trusted to make assessments that other professionals will act on; this trust is based on individuals and/or on the reputation of the HAH service.
• The HAH service has direct access to shared equipment stores or has its own stores.

A number of the smaller HAH services worked alongside other providers, for example through palliative care hub working:

. . . we just refer to each other and talk to each other. You know, there’s no having to refer to a specialist nurse with a particular form, I would actually just speak to them and discuss it and they’ll pick up the referral.

Secondments to a different setting also helped integration; for example, XSP04, a community matron, had worked in various settings in the area and had strong links with her palliative care colleagues:

I’ve turned to [HAH] for support in complex situations like that, you know. I’ve used their social worker, I’ve used, you know, I know their therapists and I know their senior nurse, I could phone and discuss anything.

Good working relations often stemmed from the bottom up, based on pragmatic decisions of ‘finding the best person to do the job at the time’ (XSP04, community matron) and, for the smaller HAH services, agreeing how tasks were divided up, keeping patient need at the forefront:

. . . when the hospice at home service started with the registered nurse part of that service, that involved quite a lot of negotiation with the district nurse about who should actually do what and it’s definitely an ongoing discussion about how things are divided up.

There was less evidence of effective joint working with social services:

. . . if you’re talking social services, they talk a different language, don’t they, you know, urgent to them means completely something different than urgent to me.

There were also examples of silo working, even within the wider hospice organisation, for example between the inpatient unit, day service and HAH, which partly related to capacity, but affected integrated working between staff:

. . . we are trying to break down any barriers between the departments. I’d like to have, for example, the rota-ing . . . is done by each department on their own at the moment and looking at whether or not that should be blended together as one. So that actually staff are much more used to working across departments rather than I’m a ward HCA, or I’m a HAH HCA.

Professional perspective

There were many examples of HAH staff working closely with colleagues in partner organisations, particularly community nursing, to enhance integration and co-ordination, regardless of organisational arrangements or constraints:

. . . he was discharged without a hospital bed without a care package . . . the wife was feeling very anxious, they felt very on their own and so . . . I phoned my colleague at the hospital first of all to find out what was going on. She referred to the district nurses; the district nurses were able to order a hospital bed that actually arrived by that evening. I then came and fast-tracked the patient and care was initiated . . . the carer started the next morning, then they attended regularly . . . so that is a really good example of how myself, the hospital clinical nurse specialist, the district nurses, the team, the carers’ team here were all able to work together to make sure that he actually did die at home.

Nevertheless, there were times when HAH staff felt overburdened with attempts to co-ordinate services on behalf of the patient:

. . . different services that are involved, families find it difficult to get their head round sometimes, you’ve got Marie Curie, you’ve got us going in and then sometimes you’ve community carers going in four times a day, they go in just to do the personal care, sometimes they’ll say who are you, where are you from . . . so I do think they find it difficult.

And, in some cases, there were ‘ruffled feathers’ as services, individuals or roles came into conflict:

. . . the district nurses get to know the patients . . . and build up relationships with them . . . and then we suddenly go in and they are sort of pushed to the side. I think that’s what they feel, and we can tend to look . . . overzealous . . .

Patient and family perspective

Patients and their carers in the home were not overly concerned about which organisation, funding stream or system was providing the care, provided their needs were met as and when they arose. Examples of arrangements that improved ‘right care, right place and right time’ included a single point of access and 24-hour access to advice and support from a readily accessible telephone number or local rapid-response service:

And we’d been looking after mum all those years and struggling to get appropriate help and advice about the dementia, and it had been extremely frustrating at times but at the end of that phone call, the nurse at the end of that phone said to me ‘now you do realise we have a 24-hour helpline at the hospice, if you have any queries, any problems whatsoever just pick up the phone and someone is here’ . . . And I put the phone down and I burst into tears because it was the first time I felt we were being truly supported to care for mum.

There were many examples of the hospice telephone service being the gateway to solving problems; in this example, the carer was talking about his mother’s poor inpatient experience:

. . . when [hospice] became involved, nothing went amiss . . . I’d ring ’em up and say ‘I’ve got this problem’ and within hours the problem was solved . . . people would be forced to react after the [hospice] had spoken to them.

The role of individual professionals on the ground was pivotal to the patient/carer experience, particularly ‘just to have a name and know that there was support if we needed it’ (PC12) and if they called, a response would be forthcoming:

I’d always said right from the start I wanted him at home and he’d said, you know, ‘it’s too much and what if we don’t get the support?’ . . . one Sunday night he said ‘I feel really awful . . . can you call the nurses?’ and it suddenly, it’s sort of 9/10 o’clock and I said ‘Why? Why are we calling them?’ And he said ‘I just need them to come here’ . . . they literally come, they reassured him and then they went away and I think it was his sort of test that if we called someone, they would come.

Regardless of what services or organisational arrangements for integration and co-ordination were in place, carers did not always know who to contact, when or how, and sometimes found themselves in unhappy situations as a result. In this example, the husband explained how they received monthly monitoring calls from the HAH service. However, when his wife deteriorated unexpectedly, they did not know who to call:

During the day, she was in pain a couple of times and wasn’t – I suppose being naive and never being involved in this – wasn’t quite sure who we should call so we phoned the hospice and uh, they said ‘well, I think you better call the doctor or ring’ was it, 111 or something like that? . . . and eventually the ambulance took her to the hospital, and the final time she never came out, so we never used the hospice. Although she did want to go to the hospice but things didn’t turn out that way.

Despite many examples and evidence of good ideas and areas of good practice, the overall impression from public attendees at the consensus workshops was of a whole health and social care system in chaos. People frequently experienced multiple assessments, conflicting advice and information, and delays to their care and treatment and often found that they (or their carer) were the only source of up-to-date information, in a sense acting as their own care co-ordinator. This was compounded for several carers by scant knowledge of local services and, for some, a lack of prior awareness of their local HAH service. In response to this and other contextual factors, HAH services focused some salient actions around marketing and referral.

Marketing and referral

The CMO for this configuration is shown in Box 5.

Raising awareness

Organisations employed a range of strategies to achieve knowledge and understanding of the HAH service and its role, for example:

• Allowing self-referral and raising awareness among the public directly (via telephone number, website, GP, previous experience of hospice services). At times people who became aware of the service were able to ‘get a foot in the door’, even if they were not able to self-refer directly.
• The fundraising element of the organisation used events to market the service and educate the public about its role.
• Clinical staff had an important role in encouraging referral to the service through their day-to-day work and interactions with colleagues and the public.

One site reviewed the demographics of patients coming through the service and acted:

. . . we knew that there were patients in the local community, the Chinese community, not far from us that weren’t accessing any of the services . . . So, a couple of the HAH nurses went there and spoke to the residents . . . we talked specifically to them about HAH and the sorts of things we could offer . . . to try and break down some of the barriers.

Fear of death and dying

This context was well recognised as a backdrop in which all the HAH services operated:

. . . you’d be surprised how many local people just don’t know we’re there because people go around quite blinkered you don’t want to be involved with a hospice unless you need it. And we’re trying to dispel those kinds of myths and get people aware of what we do.

The provision of training for staff outside the HAH service was one response to this, explored further in the next CMO (knowledge, skills and ethos) but also relevant here.

Getting to the right patients and equity

To continue to function effectively and equitably, services had referral criteria and strategies to discharge or transfer care out of the HAH service. Several services, particularly the larger, 24/7 services (model 1) in this study, had patients under their care for longer periods of time (> 6 months) and had patients with varying levels of need over time. Although carers appreciated early support, paradoxically this left carers to proactively contact the HAH service if needed between visits, and many of the carer respondents from these services had less contact with the service:

. . . when they made their appointments said ‘oh we’ll come and see you in such-and-such a . . .’ you know, in a few weeks’ time and in-between we didn’t really need to ring them for anything.

A range of strategies were employed to manage demand for HAH services, including:

• admission criteria, which varied between HAH services, in terms duration of service, patient factors and the funding source
• having trained triage staff to manage service admission
• the provision of clear information about referral on to other services when the HAH service was not, or no longer, deemed suitable
• categorising patients’ levels of need and adjusting the service level accordingly and/or
• the use of other hospice services (e.g. day care).

One site triaged patients into six categories, according to their level of need, from ‘actively dying’ to ‘three monthly monitoring’ (i.e once every 3 months):

. . . we have our ‘blues’ who don’t need a face to face but you need to keep in contact with them because they’re the type that will hit crisis and won’t think about phoning in, so they have like a monthly phone call . . .

Another site employed strict criteria in terms of the duration of their input:

We have a 4-week end-of-life criteria, . . . so we will review at 2 weeks and look to see whether or not people have had onward referral to CHC or social services and we will pull out at 4 weeks if appropriate. Now if it’s 4 weeks and somebody’s clearly dying then we would stay, but generally we would, we don’t provide ongoing care . . . We’ve got limited resource.

Another site described criteria as follows:

. . . one is somebody that’s on the end of life, maybe the last week of life, few days, and we will go in as a team and do whatever that patient needs to keep them at home . . . the other one is if somebody’s in their last 12 months of life but has got an acute episode, and that may be uncontrolled pain . . . most of the time it’s carer fatigue, where the carer just can’t do it anymore.

Overall, we found that services were reticent to discharge patients: ‘we’d never leave someone in the lurch’ was a common refrain. Mostly, it seemed preferable for HAH services to control their caseload by managing access at the point of referral. One site took only NHS CHC referrals, but the conflicts remained:

The difficulty we have with our HAH service and we’ve had twice recently is where people need HAH but they’re not at the stage of their illness where they’re eligible for continuing fast-track funding. Then we have a dilemma because the size of our services versus the need, you know, we would be showing inequality if we were taking on people who were not funded through Continuing Healthcare in place of people who were. We wouldn’t really be fulfilling our contractual agreement . . . [however] . . . we would never leave anybody in a true crisis.

It seemed that none of the services had waiting lists as such, but some (re)prioritised in times of high demand according to unofficial criteria, for example:

. . . if it does peak then we’ll look at our bank . . . see if anybody else can do any extra hours . . . If it becomes . . . you know, over a long period of time or a sickness or whatever we’re not able to meet demand, then we have to prioritise . . . although our primary remit is for patients who are in their last days or weeks of life . . . and you know we can’t see those patients if they have low complexity and low need, we go back to the district nurses and say ‘we’re really struggling today; we can’t go’.

Managing expectations

Managing patient and family expectations was a process of continuous work over time, involving information provision and negotiation between the HAH service and those in the home (see also the ‘support directed at the carer’ CMO). When this worked well, patients and their carers could make informed decisions and choices at each stage of the care pathway, even adapting their requirements to the availability of the HAH service:

Some family carers did not feel prepared for the complexity of needs and challenges:

. . . the process of encouraging people to die at home I’m sure is absolutely fine . . . But I’m quite sure there are going to be many, many, many cases . . . where it places an enormous strain on the family . . . We had no preparation . . .

When expectations were not well managed, disappointment and frustration could result:

I called every day to that last week saying, ‘Any beds, any beds?’ and [nurse] saying ‘Nope, nope, sorry, sorry, sorry’ and on Friday she said ‘we’ll talk on Monday’ and I said, ‘it’s not . . . he’s not going to last that long’ . . . and I was right, he died on the Sunday morning, on his birthday. And at that point I would’ve thought ‘is it worth moving him?’ because he’s not, you know, he’s so unwell and it’s that mad – ‘you have to be sick enough to get in, but not so sick that you’re about to die any second’, so, it’s like the Goldilocks of terminal illness, . . . that makes me sad.

The need for marketing to increase visibility and referral numbers for sustainability purposes, together with a genuine desire to encourage the identification and referral of the whole range of suitable patients who could benefit from HAH, seemed to conflict with elements of the ‘hospice ethos’ of services: preferring not to discharge patients, not trusting other services to provide adequately, and not wanting to abandon patients and families. As a result, caseload management became a significant challenge (overlapping with the next CMO, ‘knowledge, skills and ethos’).

Knowledge, skills and ethos

The CMO for this configuration is shown in Box 6.

Know-how, experience and expertise

Hospice at home services identified and prized their specialist status:

. . . we are the only specialist provider and so HAH is the only specialist palliative/end-of-life care service in the area . . .

And the patient and their carer or family were the ultimate beneficiaries of the know-how, experience and expertise of HAH staff:

It’s a skill level, isn’t it, to be able to detect, because I hadn’t detected it and I’m his wife. [HAH staff] had. She said ‘no his breathing’s changed’, and she knew. So I was very grateful that she was there because [. . .] she had had quite a deep nursing background so she had the skill, so I’m very grateful for that.

Time

The resource of ‘time’ was a context that all HAH services prioritised, but was a particularly strong theme among the smaller providers. It was also a mechanism that achieved high-quality care and confidence in the support that patients and carers received:

I keep coming back to time. I just feel time is such a massive, massive factor. And that just allows people to open up more when we’re there each day. They can see that there’s no rush. . . . It’s priceless isn’t it – time.

It was very good, very professional. They took me and my husband at our pace.

This was such a valued resource that patients and carers were prepared to compromise in some respects (e.g. not knowing what HAH care they will receive that day until the morning of the day or accepting a reduced service when they knew that the HAH service was under pressure, provided it was clearly communicated):

[T]hey always let me know what was happening . . . and if they might say ‘oh we’ve got to go to [another area] first, would you like us early or later, I said ‘oh, can you come later now, that settles him down for the night’. They said ‘no that’s fine with us’ and we sort of worked it all between us; it was brilliant.

Again, time pressures were well managed by HAH organisations through consistent communication with patients and carers (e.g. if they are going to be delayed).

[I]f there was going to be a change [HAH] ring you up and say ‘look we’re running about 20 minutes late, we’ll be with you at such and such a time’. And that even went for the weekend, absolutely brilliant . . ..

Training

Both the experience in EOLC and the training of HAH staff contributed to making patients and carers feel that they were in expert hands, which inspired trust and confidence:

Even, you know, doctoring dad’s pyjama trousers so they could pass tubes through . . . and things like that, it was . . . again without that knowledge you . . . without their support we wouldn’t have even thought of things like that . . .

Providing training to upskill staff outside the HAH service was also seen as important.

Supported staff

Policies and processes in some HAH services supported and allowed for extended roles (flexibility of roles) as necessary to meet patient needs. This feature characterised services that prioritised responsiveness to patient need, rather than a more rigid service structure and functioning, and may also be a feature of smaller, potentially nimbler, organisations. For example, one smaller service had set up a new urgent-care service:

. . . the Urgent Response has changed the culture of the HAH team because they recognise that they’ve got the skills to be able to go out and deal with things urgently, so they don’t need to refer on to a CNS to do that, but actually we trust and respect them to go out and do that. It’s changed the culture of the wider team because it’s bridged how they work together and improved the working relationships and it’s changed our culture of care . . . we know that, within the total service, that we can respond much, much more quickly.

Support directed at carers or the patient–carer dyad at home

The CMO for this configuration is shown in Box 7.

The impact of all the HAH services (with their various approaches to sustainability; volunteering; integration and co-ordination; marketing and referral; and knowledge, skills and ethos) was ultimately felt in the patient’s home, and this CMO configuration draws together many of the themes from all of the CMO configurations.

During end-of-life care

Hospice at home staff recognised the need to extensively support carers, and some of the case study sites offered specific carer interventions such as support groups and sitting services. Practical carer courses were also found to be useful:

I thought the mobility one was very good, which was teaching us how to use the slidey sheet and how to get people out of a chair . . . all that sort of stuff . . .. There’s one about nutrition, interesting, . . . and then there’s another one . . . about the actual dying process and the symptoms and what to look for and you know, how the process proceeds.

Communicating with carers was key:

. . . massive part of our job, yeah, talking to families because they feel the responsibility . . . if the agreement has been made that they wish to die at home, most people haven’t done it before . . . we’re there preparing for it so they’re not quite so frightened when it does actually happen. I would do extra visits for that reason, not for symptom management, but just to support the family.

Although wishing to support the choice of their loved one, some carers were anxious about whether or not a ‘good death’ would be possible in their own home. For these and many other carers, the arrival of the HAH service brought a huge reduction in their sense of physical and emotional burden:

I felt a great sense of relief from the very first time they came here . . . They’re just so compassionate and they were so wonderful with me as well, it was as if I was a patient as well really, as far as they were concerned . . . she explained to me that he was going downhill . . . And then on the morning that he died, coincidentally, she was meant to come that morning and she just took charge, . . . she just did everything for me.

When asked what was unique about the care from the HAH service, many carers spoke of the professional, competent, caring and calming nature of the HAH team, in which the family could fully trust, providing the space for them to prepare themselves, and spend quality time with their loved one:

. . . just caring for my dad and I know that’s putting it simply, but because they were, as you might say, experienced, qualified, they could spot any signs, . . . it sort of gave us the peace of mind and confidence that whilst we were there they were more than caring for me dad.

Although, for many carers, the ‘handing over’ of care to a HAH service felt almost like a rescue, for others this was tinged with a sense of sadness that they were unable to continue caring for their loved one without help:

I felt rather sadder than when I had been able to do something like help. I felt I was more of a spectator, and hopefully a comfort, but was unable to physically do anything, but I felt sad that this was the case she needed and I was pretty happy that they had come and were exceptional . . .

Nevertheless, for carers wanting a more proactive role in the hands-on care, the HAH service often enhanced their sense of confidence and backed up decisions that they made. Positive experiences of carers also included being able to ‘double up’ with the HAH and undertake care as a partnership, with some HAH services describing how they would teach carers to undertake care activities. Compared with the other services they may have been receiving, HAH was often characterised by a relationship underpinned by continuity and, in most cases, being easy to contact.

For many carers, this relationship was strengthened when extended to the whole family. Indeed, the use of ‘family’ as a metaphor was frequently used by both carers and HAH staff to describe the relationship, particularly among the smaller providers:

. . . I felt comfortable, almost like a family . . . you feel cocooned in this world of they’re there to help you and I felt comfortable . . .

Although the HAH service was often seen as a temporary extension to the family unit, it was also important to tailor the relationship to the patient–carer dyad, with some couples wanting more marked boundaries to maintain a sense of the home as private.

Most carers highly valued HAH. However, for some, the HAH service did not meet expectations. For a few carers, this was influenced by home not being the PPOD for their loved one, but feeling that there was an inherent pressure in seeing dying at home as the preferred option:

The main thing that I came away from all of this was the concept of, you know, encourage people to do it, have this happen in their home and service results you get asked quite frequently, you know, ‘are you happy to die at home?’ and we get asked ‘are you happy for your mother to die or your wife to die at home?’. And, you know, the natural instinct that question is yes because you feel, you know, you want to be in the body of the family and it’s a nice way for anything to happen . . . It’s very seductive to say to somebody ‘do you want to die at home?’ . . .

This perceived pressure was extended, in the view of another carer, by expectations that the HAH service would be providing the same level and intensity of care provided in an inpatient hospice, including physiotherapy and 24/7 attention.

Expectations of HAH service delivery were also recognised as a potential issue by HAH providers:

. . . we have had a couple of comments from families, who said, ‘we want more’. But, you know, when you’ve had a good service for a couple of days and you suddenly realised, actually, this is wonderful, but actually the patient stabilises and we have to sort of re-evaluate how much care we’re putting in because this other patients who also need, then they’ll say, ‘oh, please don’t take it away from us’ . . .

The majority of the carers we interviewed were realistic about HAH capacity. However, the following quotation also demonstrates that earlier support would have been welcomed, whereas many of the smaller providers provided input only in the last few weeks of life:

. . . if we could’ve had that similar service right from the start, I know that sounds a bit selfish in a way, . . . just that unfortunately a lot of organisations just don’t have the capacity to provide, if you like, the service we got at the very end, or towards the end.

Nevertheless, there was evidence that information about HAH services was lacking. This fell into two categories. First, some carers commented that they had little awareness in the early days of how to contact palliative care support staff, and what HAH offered, with detail on the latter being seen as important in reducing anxiety when deciding to care for a loved one at home. This was less likely to occur when carers were already well networked and knowledgeable about the whole system of care:

. . . we were very lucky in that our GP is a friend who’s known us for 20 years so, you know, we were very good friends so we did have a lot of support there and also [name]’s oncologist, our daughters went to school together so, again, we had a good solid . . .

However, for some, even when in the HAH service, they were still not clear on who to contact:

. . . who the hell am I going to turn to? Have I got to phone the ambulance because I can’t get you out of the chair, do I phone the [HAH], the community lifeline? I didn’t know, in that situation [patient stuck in chair], who I was supposed to call . . .

Overall, most carers felt that the HAH service had more than exceeded their expectation of care and support. In contrast, only a very few carers received the support they wanted post bereavement.

After death

One carer described how she felt supported by the HAH service after bereavement:

. . . the lady that came was here for a couple of hours talking; it’s always nice, when something happens, it’s not just ‘that’s the end, they’ve gone’, there is someone following it up to make sure that things were OK and things are OK.

Nevertheless, many of the carers we interviewed found it very difficult to move from a relationship with the HAH team as being part of an extended family to a sudden halt in their visits, almost creating a second sense of loss:

. . . the one thing I found hard is [husband] passed away, the girls [HAH team] left and that was it. Now, you’re very busy at first . . . we had the funeral, we did all the form-filling and then suddenly, I’m on my own . . .

Carers appeared reluctant to proactively seek bereavement support from the HAH service, recognising that the service was already very busy, or not knowing who to contact. Some HAH staff also recognised that, although bereavement support tended to be delivered by a different part of the hospice organisation, there may be times when follow-up by the HAH team may be beneficial:

I think there are certain patients and families that we could probably go in and see once or twice after the patient has died, and I think they would benefit greatly from that, because obviously they have built up a relationship with us . . . it’s kind of cut off from that moment that the patient has died.

For those who had proactively sought support from the hospice, there was evidence that the format was not matched to the carer:

I tried last week to go to a bereavement group because they send me mail-outs and things, for walking, in [name of] Park. So I tried to do that, but I took my dog, because I wouldn’t want to go walking in a park without the dog, and nobody – I mean . . . I ended up walking the dog by myself, like . . . [pauses], . . . I dunno, I’m not a joiner-in of groups with people.

The importance of being supported in bereavement by someone who had shared the EOLC journey was summed up by this carer:

[HAH nurse] came after [husband] died. She came the next day or 2 days later and I think she came once after that, but following that they were telephone calls, yeah . . . It was a huge difference because I think that makes you feel more comfortable, . . . you know, they’re aware of what you’ve been through so it’s easier to talk to somebody that you’ve already . . . that you know that’s empathetic towards the situation that you’re in and that you’ve been through than it is to a complete stranger who you’ve never seen before so, yeah . . . I think it made me aware or feel that, you know, if I did run into a brick wall at any point, you know, that I could pick the phone up and talk to somebody.

Summary

Six CMO configurations captured the key factors relevant to providing optimum HAH services: sustainability (of the HAH service); volunteers (use of, in the HAH service); integration and co-ordination (with the wider health and social care system, including commissioners); marketing and referral (of the HAH service); knowledge, skills and ethos (of HAH staff); and support directed at the carer or patient–carer dyad at home.

The following chapter draws these findings together, along with the quantitative and health economics results from Chapter 6 and other information in the literature, to explore what conclusions can be drawn from the synthesis of the combined data.