Workforce shortages and the willingness of many people in the local community to volunteer makes the volunteer workforce attractive to hospice and palliative care organisations. Changing societal norms around family and community structure have impacted on the social networks of many patients and carers, with demand on carers compounded by HAH’s limitations in providing longer periods of input. Whilst a volunteer workforce could result in extending this period of care, HAH 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 may take a different approach to some aspects of volunteering, along the lines of the Compassionate Communities model with volunteers acting as good neighbours.
While 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 two 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…
WC48 (carer)
However, because HAH services were predominantly focused on the patient rather than the carer, the rapidly escalating healthcare needs of the patient, and the requirement for skilled hands-on care to meet these needs, resulted in many HAH services not seeing 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 healthcare 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…
XSP02 (Volunteer Manager)
For volunteers, the length of time to develop a relationship with the patient and family was important, which was unlikely to be available in some of the HAH services where 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.
WSP06 (Volunteer)
Nevertheless, while some carer interviews suggested that it was more befriending or “errand running” that would have helped, one of our 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 the 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.
ESP05 (Volunteer)
The volunteer provided two 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 Clinical Commissioning Group (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 which 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…”
ESP06 (Head of Wellbeing)
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 an 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…
VSP03 (Chief Executive)
While 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 palliative phase.
- Carer companion: later on during EOLC with the relationship extending up to 3 months post bereavement.
- Bereavement support volunteers: 10 day training provided and volunteers delivered:
- One to one bereavement support for up to 6 weeks, each volunteer has a maximum caseload of 3 bereaved carers,
- Facilitating monthly support groups,
- Participating in “walk and talk”,
- Attending early bereavement cafes.
- Discharge buddies: supporting patients discharged from the in-patient 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 when compared to 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 …
PSP05 (Volunteers Manager)
At this site volunteering was perceived as innovative, was embedded within policies, and 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 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…
PSP05 (Volunteers Manager)
The potential benefits and challenges of volunteers were also expressed by sites considering developing their volunteer workforce. One respondent from a site felt:
…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…
VSP03 (Chief Executive)
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…
VSP04 (Director of Operations)
This tension between recognising a potential volunteer role in the last days of life, versus seeing any benefit of this role outweighed by potential risks, was amplified in our consensus workshops. While 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 boundaries are clear and adhered to, versus allowing natural responses to 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 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…
GSP02 (Physiotherapist)
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…
EComm01 (Commissioner)