Patron: Sir Ranulph Fiennes OBE
Working in partnership with St Luke’s Hospice
Brentor & Moor Compassionate Neighbours is a small charitable organisation, run entirely by volunteers, and its work radiates out from the small village of Brentor, on the fringes of Dartmoor in West Devon. It has been set up specifically to support individuals who are living with a life-limiting illness or are approaching the end of life. It works closely with the local primary care teams, as well as other voluntary and statutory agencies, with the aim of contributing to the integrated care of this vulnerable group of people, so that they may continue to be cared for in the place of their choosing- usually their own home.
A brief history of Compassionate Communities
In the modern world, Compassionate Communities can be traced to Kerala, in India, where Dr Suresh Kumar established a regional community-based palliative care model (“Neighbourhood Network in Palliative Care”). It is the largest community-owned palliative care network in the world (Pop 12m/ many thousands of volunteers/ very small medical team i.e. less than 50 doctors/100 nurses).
The concept was further developed as a Public Health model by Professor Alan Kellehear, of Brisbane University, and in the last few years the model has been adopted in several places around the UK.
In simple terms, the approach identifies and utilises appropriate members of the local community, as volunteers, to support individuals either with a long-term condition, living with a serious life-limiting illness, or approaching the end of life, using a networking approach to support their changing needs. It is what is known as a Public Health approach to end of life care, and is a way of enhancing existing supportive networks without necessarily adding to existing- and overstretched- professional services.
The Compassionate Communities model adopted here is organised and operated locally- in other words, the local community helping to “look after its own”. The scheme co-ordinator receives referrals either locally or from the primary care teams; after an initial assessment by the co-ordinator, a volunteer is “twinned” with the individual, visiting on a regular and reliable basis, acting not only as supporter and advocate but also- most importantly- as the “eyes and ears” of the relevant primary care team, reporting back any concerns or changes in the individual’s condition or needs (i.e. acts as an early warning system).
Most individuals living with a long term condition or approaching the end of life wish to remain in their own home:
- 71% want to die at home (NEoLCIN 2013); only 20% achieve this (“Dying for Change”, Demos, Leadbetter C and Garber J, 2010). These figures are gradually improving, but there is still a long way to go.
- Cost pressures on hospital beds (unnecessary admissions) – One fifth of the NHS spend (some £20bn) goes on End of Life Care, yet only 40% of those who die in hospital have a medical need
- 25% spend a month or morein hospital. It now costs in excess of £400 per day to look after each patient in hospital (DoH 2015)
- 58% die in hospital, but only 8% choose this (Marie Curie 2012)
- The estimated cost of a day of community care at end of life is £145, compared with £425 for a specialist palliative in-patient bed day in hospital (Marie Curie 2012)
- Large geographical variation in End of Life spend: £154-1600 per person (National Audit Office)
- Many people are living alone, and many are “network-poor” (i.e. little community or family support)
- Many individuals are frail/vulnerable
- Many are unable to carry out practical tasks
Demos: “…people need a stable relationship with someone who can help them….what they want is a continuous, supportive relationship with one person to whom they can turn for support and advice. Specially trained volunteers might be able to provide aspects of this role, perhaps especially if they themselves have experience of caring for someone with a particular condition.”
“The presence of a family or informal carer is a key component in achieving a home death; effective and sustained carer support, especially during longer illnesses, is likely to increase home death rates” (Murtagh, via NEoLCIN 2013)
- To support individuals who are suffering from a long-term/ life-limiting condition and/or approaching the end of life (+/- 12 months), helping them to maintain their independence for as long as possible in order for them to continue living (and dying) in their own home if that is their wish.
- To support their families in their role as carers
- To act as the “eyes and ears” of the Primary Care Team
- To help identify current network and service gaps
- To help identify individuals’ priorities, and liaise with appropriate voluntary/health/social care agencies to provide the necessary support to assist in achieving these
- To support the right of people nearing the end of life to choose to be cared for in the setting of their choice. Recent figures indicate that 81% of patients supported by community palliative and hospice teams die out of hospital, compared to a national average of 48%. The involvement of a community team more than doubles the chance of being able to die at home (Minimum Data Set: NCPC/NEoLCIN/Hospice UK 2016)
The Compassionate Communities model of care is an ideal fit with the Actions for End of Life Care 2014-2016 and the NICE Quality Standard for End of Life Care (NHS England 2014); it also chimes with the Declaration on Person-centred care for Long Term Conditions (NHS England September 2015), which states that it “allows the patient control, and brings together services to achieve the outcomes important to me”. The declaration highlights that whole-person care, particularly for people with complex, multiple conditions, requires flexibility and partnership working, in order to deliver the most desirable and appropriate care throughout the journey. The key to this is “collaborative care and support, planning between professionals and people living with long term health conditions”.
“Ambitions for Palliative and End of Life Care- A national framework for local action 2015-2020” specifically targets community initiatives; Ambition 6 of the six ambitions is “Each Community is prepared to help” (NCPC & Hospice UK 2015).
One of the keys to improving care in the community towards the end of life is the provision of Integrated Palliative Care.. It is about providing the right care, at the right time, in the right place, by the right person. Compassionate Communities are set to become an invaluable part of the jigsaw of integrated care in the coming years.
Brentor & Moor Compassionate Neighbours has been established by a small group of dedicated volunteers; however, as Geoffrey Chaucer said a few years back: ”as an ook cometh of a litel spyr…” (Troilus and Criseyde, 1374)
Brentor & Moor Compassionate Neighbours is an autonomous non-denominational sub-group of Brentor Parochial Church Council
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