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Building Compassionate Communities Around End of Life Care
John Bailey October 18th 2015 Why community
development/participation ?
Professionalised dying and expectations are that when someone is
dying care must be provided by professionals NHS figures state that
56% of terminal ill people wanted to die at home, but only 18%
achieved it If there was a gap in services, like a chaplain,
Hospices would fund raise and employ a chaplain without asking your
community what they needed. 1About 3-4 years ago one of the Hospice
founders had his 90th birthday and said one of his biggest regrets
was the fact we were paying for jobs that volunteers and the
community could do. Grandson who had fish and chips with his
granddad each week. If current trends continue fewer than 1 in 10
will die at home by 2030
July 2011 survey of support to our patients.20% received no
informal support The Future Needs: Increased population Increased
elderly people Increased chronic illnesses and dementia Increased
people living alone Ernesto Sirolli: Want to help someone. Shut up
and listen
Ernesto Sirolli: Want to help someone? Shut up and listen! | Talk
Video | TED.com When most well-intentioned aid workers hear of a
problem they think they can fix, they go to work. Ernesto Sirolli
Italian aid worker every project they set up failed, they went to
do good work, but everything they touched they killed. On one
project they went to Zambia to teach them to grow food, they
arrived in a magnificent fertile valley with their Italian tomatoes
and zucchini seeds. The Zambian people had no interest, so the paid
them to work and sometimes they even turned up. This fertile valley
had no agriculture, but instead of asking Why they didnt have
agriculture, they thought Thank god we have got here just in time
to save them from starvation. Size of fruit then over night 200
hippos ate everything.They asked the Zambian people why didnt you
tell us about the hippos, to which the obvious reply was you didnt
ask He goes on to say it wasnt just the Italians causing more harm
than good, but the Americans, the French and the English, but in
the end he became proud of his project, because they achieved more
than the other countries, because at least they fed the hippos.
What we have done is similar, the Hospice was founded by the
community, but we felt we needed to professionalize palliative
care.However, we are now turning back to listen to what our
communities want. Creating Community at end of life
https://caringatendoflife.files.wordpress.com/2011/09/2012-bringing-our-dying-home.pdf
Bringing Our Dying Home Where we went wrong we thought wecould
replicate the Australian model, but they had less services, state
paid palliative care, very few died at home and mistrust between
professionals and volunteers.We believed the same mentoring of
carers would work here. Policy Service delivery Community Outer
network Inner network Person Inner Tom sitting with granddad Outer
Tony and ramp.Phil mowing the lawn, milk, just say
Yes.Mainstreaming networking. Community Companions/Mentors Carers
reluctant to ask for help esp. men are useless at asking for help.
Supporting carers by being involved with patient first. Are you
here to help me die? Gentleman who was too frightened to go to
sleep MND gentleman, companion got equipment through MP We need
volunteers that can go with the home care team into peoples homes.
These volunteers dont have to talk about the illness, just provide
support to patients and families in their own language because
sometimes its difficult for patients or families to talk to either
other family members or service providers about certain issues but
its easier to talk to someone from the same cultural and religious
background who speaks the same language. That would have really
helped when my father-in-law was dying at home Proposed Model of
Supporting Compassionate Communities
Coordinator Community Companion 1 Coordinator would oversee 10
mentor a day (WTE 50), each mentor could have three carers, so for
one WTE Coordinator150 carers could be having this extra support.
Carer Carer Carer Buddy Group This is how we got it right, from the
carers and family group they asked for a group after, they named it
themselves, most groups support themselves away from the Hospice.
Two bereaved ladies who met in the Buddys group, one was able to
help sort out the others husbands clothes after he died. A lady who
was bereaved who had met another carer in the family and friends
group supported her and helped care for her husband and was their
when he died. Two men go fishing together, one had never been
before, but is finding great solace and support. Community Hubs As
Ernesto Sirolli says we need top become servants.Therefore, we are
piloting using one of our shops and inviting people to join us.We
shut up, with no ideas and sit with local people.They hopefully
become like friends, and we listen to what they want for their area
and end of life care.Then with their passion they grow themselves
supported by us and also become supporters of the hospice.
Compassionate Charter
Compassionate communities recognise that all natural cycles of
sickness and health, birth and death, and love and loss occur
everyday within the orbits of its institutions and regular
activities; care for one another at times of crisis and loss is not
simply a task solely for health and social services but is
everyones responsibility. Outcomes and Progress Increased support
for carers from their ownnetworks Reduced isolation by increased
community connections Increased capacity to support carers by the
community 2. MP visit, hadnt seen anyone for six weeks. It is a
global success Neighbourhood Network in Palliative Care in Kerala
Over 10,000 trained volunteers 2500 patient visits per week
Volunteers are the backbone of the organisation and have allowed
the coverage to reach over 70% Provide basic care, social and
psychological support and are the link between the patient and
healthcare team A Challenge How much of what we do as professionals
could be done by non professionals and would this make life more
meaningful for the patient, family, friends, neighbours, people we
know and people we do not? Any Questions? Pathfinder site
Compassionate City Charter Community hubs Buddy Groups/carers
groups Public health toolkit Model of thinking - mainstreaming
e.g.s Thai lady, milk story, Phil mowing the neighbours lawn. Are
you here to help me die?Frightened of going to sleep gentleman. 60
minute talk, 15 minutes questions Ruth Clark Tel: Lee Abbey Network
Mapping Any Questions? Circles of Care: should community
development redefine the practice of palliative care? Julian Abel
et al. published in the BMJ Supportive & Palliative Care
abstract can be found at: