I’ve heard more than one charity describe an internal battle between their mission and their survival. A charity or social enterprise’s mission is often first set by a community. Years later, the terms of their survival can feel as if they are being set in an office by people who at a distance from that community. That was a battle that I heard described by numerous public service-facing charities during the consultation with the VCSE sector which we carried out for the Joint VCSE Review. Hospices are at the forefront of that battle: the hospice movement was founded on the view that a good death is a social, not a medical event. The NHS now leans heavily on hospices, which have, like many charities delivering public services, ‘professionalised’: offering highly sophisticated medical care alongside a wealth of social and practical support, in the community as well as in often much-loved buildings and grounds. Hospices bring more funding into the NHS than they receive from it, as well as countless hours of skilled volunteering, but that doesn’t mean that NHS managers in every area approaches them as equal partners.
I’ve been talking with colleagues from the hospice movement who have been working with Nesta and others on a new model of social action: Compassionate Neighbours. Hospices are great at recruiting volunteers who are a vital part of the service and form bridges between the hospice and the community. St Joseph’s hospice noticed that there was a gap in the support which families were looking for that was not easily filled by traditional volunteering. When someone approaches the end of life, particularly if they have a health condition which requires complex care, it can be an isolating experience for a family. Some friends and neighbours withdraw, or worry about ‘intruding’. Agnes said, “I have friends but no-one turns up to see me, why? I needed to go back to the hospital because … if I was in hospital then people would come to visit me.” Where families do not have a strong extended family or friend network, the hospice felt there could be a new role, and partnered with St Christopher’s hospice to develop the model and roll it out to seven other London hospices, and now further afield.
Compassionate Neighbours was inspired by the Compassionate Communities movement, and the Palliative Care Network in Kerala, India. Compassionate Neighbours do what they say on the tin: they form bonds with families who might otherwise be isolated, visiting regularly, listening, providing practical help so that families who might be caring for someone for an extended time can carry on with some of the activities which are important to them. Some will also use their experiences to start conversations with community groups and local people about what people need at end of life, breaking down taboos: “I used to go past [the hospice] on the bus and now I know that it is a place that’s alive and not about death”.
Volunteer roles can often be tightly defined by the charity recruiting them. This can be necessary for some roles, but it can also limit the volunteer’s scope for using their particular skills, and it puts boundaries around the kinds of relationships that volunteers can have with the people they support, in the same way that paid workers in tightly-defined roles can feel that they are not always able to use all of their creativity and capacity for compassion. ‘Gift model’ help is help that is given by ‘us’ to ‘them’: the gift of my expertise to fix your life.
The Compassionate Neighbours initiative is subtly but powerfully different. Neighbours have more scope to define their role around whatever skills or capabilities they feel they have, and they are matched with people with similar interests or outlooks (Lucia says she and Agnes are “more like family and some of the things she says reminds me of my mum… her family now introduce me as part of their family”.) The role is more open-ended with the hospice recruiting the right people, preparing them well, and as a result having confidence in them to let go. The programme values lived experience and aims to be a way for a more diverse group of people to get involved on their own terms. Lindsay talks about “walks, coffee or lunch” with the lady she supports, their shared love of dogs, as well as intervening with support agencies, but all within the context of them both having “found a new friend… we spend a lot of time laughing”.
Compassionate Neighbours has grown rapidly and aims to be a movement of people who are re-socialising the end of life. I found many parallels with Homeshare and Shared Lives. In my book, I suggest that the principles behind our members’ work, which could be applied to any model of long term support are looking for people’s capacity and potential not just for their needs, co-producing services with those people, and concentrating first and foremost on helping people to build their wellbeing and resilience, particularly through offering help in ways which allow people to make as many connections to others as possible. To do this, you need to take time to recruit the right people (rather than wasting time managing the damage and turnover of recruiting the wrong people), match them into relationships which both parties can invest in, and be able to step back.
We share these approaches in common, along with the belief that new kinds of role can be part of changing the way a whole organisation or system thinks and acts. Compassionate Neighbours have the potential to help hospices venture further out beyond the world of health or even of charitable services, and in turn to let a more diverse group of citizens venture in to those worlds, and help to reshape them.
That deeper change implies a shift in power which will not always feel comfortable, particularly at a time when hospice leaders feel the pressure of scarce resources being passed to them from their NHS partners. Perhaps the battle between mission and sustainability starts the day a community’s idea becomes a constituted organisation, and continues throughout its life. As Compassionate Neighbours expands it will doubtless encounter that battle on a larger scale, alongside all of the practical challenges of scaling: how much fidelity to the model (and ‘brand’) does it aim for, and how much local flexibility? Should it be a franchise, a membership network, or something else? In supporting Shared Lives and Homeshare to scale, we have found that it easy to get lost in processes, practicalities and systems which multiply whenever a great idea hits the reality of pressurised, stressed and sometimes stuck local public service systems. At those times, the leadership of people who use and offer support and their families is more important than ever: it is the only way that a movement can remember its original mission. Models like Compassionate Neighbours are worth those struggles: practical, pragmatic and potentially life-changing – the voluntary sector at its best.
Escaping the invisible asylum 