HAH services exist in an environment where 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, the HAH needs to proactively seek control over available statutory funding, engage with the wider health and social care environment, and if a charitable organisation, to undertake fundraising and income generation from a range of sources. To recruit and retain staff to deliver the care that patients need, the HAH requires a reputation for excellence and investing in staff development and will alter skill mix profiles in response to local workforce shortages.
Funding
Ensuring sustainable funding to enable the long-term viability of the service was a major concern for all our 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 and EOLC services, including national initiatives. In contrast, having an established relationship with the 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 have had to contend with, you’ve just got to rebuild relationships every time …
EComm01 (Commissioner)
One commissioner also highlighted that the relationship was easier with smaller HAHs:
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.
VCom01 (LA commissioner)
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 one / three / five years of local services because there’s just, you know, there’s so much change all the time…
XComm01 (Commissioner)
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…
EComm01 (Commissioner)
Many of our 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 simply took the lead and provided services. In all examples this was facilitated by a board of trustees or 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…
CSP01 (Trustee)
This sense of trust was often matched by light touch scrutiny. However, feedback from our consensus workshops highlighted that while light touch scrutiny may be welcomed, reputation and trust was 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…
GSP06 (Business Manager)
Other case studies were also considering this model. The disadvantage this approach brought 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 our 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. While 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 impacting negatively when competing for funding (CW).
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…
EComm01 (Commissioner)
However, these contracts often only lasted one 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 length of the contract cycle. An alternative approach used by several case studies was to secure continuing healthcare (CHC) funding to provide or part-fund services. However, this may result in inequities particularly if some CHC packages are topped up, or conversely rigidity of service when providing only what is CHC funded 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 health care in place of people who were.
LSP04 (Director Clinical Services)
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 our consensus workshops that the use of personal health budgets may result in actual or perceived inequities, where preferential treatment may drift towards those who pay.
There were a few examples where HAH services accepted other NHS funding to support HAH, but this came with a requirement to deliver other non-palliative care roles, such as for example out of hours urinary catheter replacements. While case studies using this approach justified positive outcomes as building professional credibility and relationships, feedback from our 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…
HSP01F (Lead Nurse)
This element of privatisation of care could lead to availability being only for those who could afford to pay and may cause dissonance with the charitable ethos (CW).
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, in order to make their fundraising activities more effective. While 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 (CW).
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.
XComm01 (Commissioner)
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, and in particular 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…
VSP03 (Chief Executive)
HAH staff held honorary NHS contracts, and were able to deliver some elements of care outside of EOL, such as catheterisation. Perceived benefits of this blended model included the up-skilling 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, 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 their 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 both 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 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.
WSP02 (Clinical Director)
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.
LSP06 (Medical Director)
The reputation of a HAH 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.
CSP01 (Trustee)
While this success in recruitment and retention was welcomed by the HAH, there was the potential to have a negative knock-on effect through depleting the workforce on 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….
EComm01 (Commissioner)
The reality in all our 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
XComm01 (Commissioner)
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 which 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?
CSP01 (Trustee)
This resulted in enormous volumes of activity data being harvested, but with very little outcome or cost benefit data (such as avoided hospital admissions). Hence, the usefulness was questioned of activity data and our consensus workshop also confirmed the sense of frustration felt by staff, with a consequent resistance to collecting the data. However, larger, 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…
CSP03 (Chief Executive)