FROM SERVICE PROVISION TO COMMUNITY ENABLEMENTCompassionate Communities – The Milford Model

“Once upon a time…”

28,000 people die

1 in 4 die at home

IT MAKES SENSE

Death, dying, loss and care affect everybody and are not just issues relevant to health and social care professionals.

The experiences of death, dying, loss and care bring with them additional personal, health and social costs which are preventable and/or relievable if the right supports are available in the right place at the right time.

The majority of people living and eventually dying from advanced life limiting illnesses spend the greater part of their time at home being cared for and supported by family members, friends and neighbours.

Specialist Palliative Care Services developed historically in response to the care needs of those affected by and dying from cancer. Between 80% and 90% of patients cared for by these services have a cancer diagnosis. But the majority of people in Ireland do not die from cancer and many have limited access to Specialist Palliative Care Services.

Many people feel unprepared when faced with the experiences of advanced, life-limiting illnesses, death and bereavement and are uncertain as how to offer support and assistance.

Specialist Palliative Care Services have accumulated a wide range of skills, knowledge, expertise and information which are transferable to non-specialist settings, including the community and general public.

What is it like for people like Bill living with

an advanced illness and facing death, who

spend most of their last year of life at home,

in their community with family and friends?

–Carroll, 2010, Forum on End of Life

“I think we must look at the social context of

dying in Ireland today. In Ireland death has

been sanitised, put in the closet, so to speak.

Until lately, speaking about death had almost

become a taboo subject, resulting in a similar

denial and fear of death that is prevalent

throughout the Western World”.

SO WHAT DOES THAT MEAN FOR MILFORD?

The difficulty in talking about death, dying and bereavement (particularly to children).

The experience that the emotional impact of loss is often unacknowledged.

The cumulative and intense nature of the loss experienced by local communities particularly as a result of the number of young people who had died in tragic circumstances..

“She went up to the cemetery; she said every second grave at least was a young person. I suppose it’s only when you look at the bigger picture because in some ways bereavement is a personal thing because it’s just what happens around your circle. When you see all the circles and you see them together, it’s shocking”.

The recognition of death as profound and mysterious and the comfort and support found . in religious faith and belief in an afterlife.

Irish society was regarded as generally supportive of recently bereaved people. Ritual and remembrance of the dead were seen as important and as expressions of community solidarity for the bereaved.

Concern that bereaved people are not always allowed sufficient time and space to grieve, and that sometimes social and practical support are withdrawn too soon.

“Often around death there is a huge fuss at the time and there is quiet an intense kind of thing that goes on maybe for a few days or a week, but it is shocking then how much that is replaced by absolutely no intervention … there was a massive fuss. But then that just absolutely evaporated and then there was nothing”.

Immediate family and friends were seen as the most important sources of support for people living with a life limiting illness.

But sometimes people don’t know what to say or what to do.

McLoughlin, Rhatigan, Richardson 2011

‘How do we use the experience and knowledge of the

Specialist Palliative Care Service to support

communities, groups and individuals to enhance the

social, emotional and practical support available to

those living with a life-threatening illness, those facing

loss and those experiencing bereavement?’

THE COMPASSIONATE COMMUNITIES PROJECT

• An initiative of Milford Care Centre

• We are here to support people in the Mid-West to think a

little differently about death, to encourage people to plan

ahead, talk with others and offer practical support within the

community to those facing the end of life.

• A small change in our attitude toward death can make a big

difference to how we live.

BUT HOW ARE YOU GOING TO MEASURE IT?

54 5141

0

25

50

75

100

Nationally Mid-West Familiar with CCP

% of people who had taken NO action regarding

issues associated with death, dying, loss and care

e.g. Drawing up a will, thinking about who will attend

their funeral, considered organ donation etc

IHF 2014, Weafer Study.

P<0.00

4P<0.000

P<0.00

0Not sig.

Café Conversations (n=74)

4,53

3,16

2,1

3,06

4,76

4,18 4,18

2,88

0

1

2

3

4

5

Importance of Talking Understanding MCC Understanding CCP Difficulty talking

Pre

Post

Department of Psychology

BIL

L

Wife

Son

Sister

Best friend Pete

Work mates

Rugby pals

Neighbours

Parish

Community

organisation

s

Paid

services

I need someone

to cut the lawn

and tidy the

roses. I don’t

want to be

burden.

If only I knew

Bill needed

help...

Bill’s sick…but we

won’t intrude

Don’t

what to

say to

him.

Haven’t

spoken for

years

I am a

compassionate

communities

volunteer.

I find out what

the person

needs doing.

I mobilise the

person’s

network and ask

them to help.

I don’t do the jobs

myself…otherwise

I would burn out.

The people I

mobilise are the

Good

Neighbours

VOLUNTEERS

✓Maturity, common sense and the ability to be discrete and sensitive.

✓ A good understanding of ethical/confidentiality issues.

✓ The ability to confident and out-going, relate well to others and communicate effectively.

✓ A respectful and non-judgmental approach at all times.

✓ A good sense of humour.

✓ Good organisational skills and ability to complete paperwork.

✓ A good sense of personal boundaries and a clear understanding of purpose of the role.

7 WEEK TRAINING PROGRAMME

• Module 1 : Getting to know each other and the programme

• Module 2: Communication skills, confidentiality

• Module 3: Boundaries, understanding the Good Neighbour Partnership and making introductions

• Module 4: Assessing social and practical needs, identifying circles of community, developing and agreeing action plans

• Module 5: Understanding dementia.

• Module 6: Practice and rehearsal - professional actors

• Module 7: Safety, self-care, emergencies and endings .

BEANSTALK

✓ T – Talk to the

community

✓ A – Ask them to help

✓ L – Link people

together

✓ K – Keep an eye

✓ B – Breaks the Ice

✓ E – Explains the Good

Neighbour Partnership

✓ A – Assesses the

person’s social and practical

needs

✓ N – Network of

Community is determined

✓ S – Summarise and agree

the action plan

INSPIRE Study

Phase 0

Scoping studies

Systematic review

Interviews

Focus groups

Phase 1

Development of GNP

Recruitment, selection and training of volunteers

Brief Screening Tool

Pilot 3 patients

Phase 2

RCT

Department of Psychology

PRIMARY OBJECTIVES

To determine whether this new model of care can:

reduce unmet social and practical need;

reduce unplanned health service utilisation;

improve overall quality of life (including social connectedness and

psychosocial wellbeing);

increase the social networks and reduce isolation and loneliness;

alleviate caregiver burden.

FILM 2

COMPASSIONATE CITIES CHARTER (KELLEHEAR 2014)

“Through auspices of the Mayor’s office a compassionate city

will… develop and support 13 social changes to the cities key

institutions and activities”.

“A commitment by the city to embrace a view of health

and wellbeing that embraces community empathy,

directly supporting its inhabitants to address the negative

health impacts of social inequality and marginalization

attributable to dying, death and loss”.

“In other areas citizens have taken brilliant

initiatives such as the Compassionate Communities

project at Milford Care Centre in Limerick which

seeks to work in partnership with individuals,

groups and communities facing loss and those

experiencing bereavement.

The State must learn from these initiatives and

catch up with community-led creative solutions. We

need the panoply of State services to help us to

think, talk and tell about dying, death and loss and

enable us to support each other.”

Seanad 16th April 2014 Marie Louise O’Donnell

SOME THOUGHTS

It may take longer than you think – ground work is vital

People are compassionate, connect and want to be part of it

Despite your agenda, you will always attract bereaved people

In fact, this shouldn’t be about your agenda! But you still need a plan…

Staff need to be multi-talented

The team will need support and sources of renewal

Share what you develop – don’t be precious

Dare to be brave..and perhaps a little bit crazy.

FILM 3