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 end-of-life care 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 which 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 coordinated and effective way with other service providers. This may be through a blended service without hard boundaries around roles or services, a secondment into a different setting which 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.
National perspective
National policy and strategic direction impacted on integration and coordination, 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.
HAH organisations that kept a close eye on national policy could capitalise on or anticipate the impact of this and plan their local strategies and plans for integration, coordination and thereby sustainability accordingly. Some case studies invested substantial effort in this (see above under Sustainability and the Discussion chapter exploring outward versus inward facing organisational focus).
Service perspective
HAH services commonly formed part of a hospice organisation, often a charity, which was providing other palliative and end of life care 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.
MSP005 (Community Team Leader)
Good quality integration and coordination 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 coordination:
A “blending” approach between services
Different services can provide what is needed by the patient without hard boundaries between services via several strategies, e.g.:
- Joint posts e.g. consultants working across settings/organisations, honorary contracts with the NHS were emblematic and may facilitate this.
- Shared clinical records/IT systems (this was not common).
- A whole range of collaborative hub, coordinator, 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 into a different setting (e.g. a healthcare 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 which other professionals will act upon; 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 have their 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…
XSP04 (Community Matron EoL and Supportive care)
Secondments into 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 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.
XSP04 (NHS Community matron)
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.
XSP01 (CNS)
Where there was less evidence of effective joint working was 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…
XSP04 (Community matron)
There were also examples of silo working, even within the wider hospice organisation, e.g. between the inpatient unit, day service and HAH, which partly related to capacity but impacted on 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.
HSP02 (Chief executive)
Professional perspective
There were many examples where HAH staff worked 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 …
GSP003 (Clinical Nurse Specialist)
Nevertheless, there were times when HAH staff felt over-burdened with attempts to coordinate 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 4 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…
DSP003 (Healthcare Support Worker)
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… over zealous…
MSP03 (Health Care Assistant)
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 which improved access to people receiving “right care, right place and right time” included a single point of access and 24hr access to advice and support from a readily accessible telephone number or locality 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.
DC21
There were many examples where the hospice telephone service was 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
EC03
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.
GC04
Regardless of what services or organisational arrangements for integration and coordination 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 HAH. 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 naïve 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.
EC05
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, 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 coordinator. This was compounded for several carers by scant knowledge of local services, and for some a lack of prior awareness of their local HAH. In response to this and other contextual factors, HAHs focused some salient actions around marketing and referral.