WHO CARES – WE DO 24/7!

BRAINS Carer Support Group

Supporting Family Carers

Vanda Fear – Family Carer and Co- Founder/Co-Facilitator

Joe Micallef – Family Carer and Co-Facilitator

Jacqui Pierce – Manager ARCsupport, Karingal and Co-facilitator

Introducing BRAINS Carer Support Group

Barwon

Region

Acquired brain injury(ABI)

Information

Networks

Support

Carer Support GroupEstablished 2012

“Head injuries do not happen to

individuals;

they happen to entire families.”(Tony Moore, Rehab. Specialist and Author of Cry of the Damaged Man and Echoes of the Early Tides)

Those family members need access to peer and mutual

support to walk the lifelong journey beside their loved

one with a brain injury.

WHY WE NEEDED BRAINS CSG

WHY WE NEEDED BRAINS CSG

Carer Health and Wellbeing is significantly impacted

upon.

“While the impact on the person experiencing a brain

injury can’t be minimised, it’s those around them who

must never be forgotten…Carers have to motivate,

prod, cajole and protect and in so doing often neglect

themselves.”

(Dr Norman Swan in the Preface of “Out of Calamity” by Roger Rees 2011)

WHY WE NEEDED BRAINS CSG

The Impact of Caring on the Health and Wellbeing of Carers

“… the caring role potentially impacts significantly on all

aspects of carers’ lives, affecting carers’ physical and

psychological health, emotional wellbeing and social

relationships. These assertions are well supported by

the outcomes of recent research”.

Who Cares ...? Report on the inquiry into better support for carers

House of Representatives

Standing Committee on Family, Community, Housing and Youth April 2009

WHY WE NEEDED BRAINS CSG

Key findings from the Australian Unity Wellbeing Index Survey

include:

• carers have the lowest collective wellbeing of any population group yet

discovered, with the wellbeing of carers who live with the person

requiring care being the lowest ever recorded for a large group of

people;

• carers have an average stress rating that is classified as moderate

depression;

• carers are more likely to experience chronic pain than is normal and the

wellbeing of carers is more vulnerable to pain;

• carers are highly likely to be carrying an injury; and

• wellbeing decreases linearly as the number of hours spent caring

increases.3

WHY WE NEEDED BRAINS CSG

Social Isolation

Many carers report social isolation resulting from their caring role and the

evidence describes various reasons for this. Carers often describe self

imposed isolation and circumstantial isolation resulting from a lack of

available respite care as well as a lack of time, money or energy to

socialise.

Even with access to adequate supports and services, becoming a carer is

inherently stressful as the role usually arises in conjunction with a

traumatic and painful event that results in significant changes in the lives of

carers and their families.10

WHY WE NEEDED BRAINS CSG

International literature shows that ABI is 10 times more

common than Spinal Cord Injury and produces, on

average, 3 times the level of disability.

Two thirds of brain injuries are sustained under the age

of 24, however life expectancy of the individual with

brain injury is not appreciably shortened.

Therefore, a family member may, in the blink of an eye,

become a carer of a person with ABI and that role may

continue for decades

BACKGROUND TO ESTABLISHMENT

In a local level project report…

“In a moment, everything can change……”

Responding to the needs of families who have a

member with a severe Acquired Brain Injury or

Neurological ConditionFinal Report May 2006Report Prepared by: Jacqui Pierce, Jacqueline Pierce and Associates on behalf of Karingal Inc.

The following goal was identified…

From ideas to reality – an initial action plan

GOAL OBJECTIVES ACTIONS KEY STAKEHOLDERS or

DOCUMENTS To ensure all family members have access to a range of formal and informal support networks.

To ensure all families have access to home based computers, internet and email.

To establish formal face-to face family support networks.

To determine what informal opportunities exist for family support.

Continue to identify and connect to more families.

Work with BacLinks to establish an online family network.

Work with Headway and Brain Foundation Victoria to look at what exists in the Barwon area and what could be established.

Work with the Geelong Parent Network to examine ways of including these families in with this group.

Work with the Carer Respite Service and ensure all families are linked to this and have access to current supports and look at what else need to be developed for these families

Work with ABI Network to examine ways of including information and training sessions for families.

Review methods for identifying ‘hidden’ families and implement strategies.

Karingal Inc. – BacLinks Headway Brain Foundation Victoria Other peak bodies Geelong Parent Network Carer Respite Service ABI Network

BACKGROUND TO ESTABLISHMENT

Steps to establishment

"Nihil de nobis, sine nobis"

Nothing About Us Without Us!“

is a slogan used to communicate the idea that no

policy/practice should be decided or implemented by

any representative without the full and direct

participation of members the group(s) affected by that

policy/practice. This involves national, ethnic, disability-

based, or other groups that are often thought to be

marginalised from political, social, and economic

opportunities. This includes carers.

Steps to establishment

• Find some passionate family carers (who understand the power of peer

and mutual support) in your area to partner with.

• Find other key partners/organisations that assist with bringing the idea

to reality:

an organisation willing to auspice;

an organisation willing to provide a venue;

organisations willing to provide in-kind and/or financial assistance.

• Organise training for support group facilitators.

• Have a launch event and ensure media coverage to help spread the

word so the group becomes known.

• Hang in there the start can be slow!

• Stay family carer centred!

BRAINS CSG Launch Event March 8 2012

KEYNOTE SPEAKER:

Raelene Chapman, partner of 14 years and now also carer for Scott

McLean. Scott is a stuntman who has performed in the Matrix and Star

Wars film. Raelene and Scott’s lives were drastically changed when Scott

sustained a critical brain injury when a high-speed car chase went wrong

during the filming of blockbuster comedy The Hangover: Part II. Raelene,

who is also a professional stuntwomen, now spends the majority of her

time by Scott's side so she can be there for every small accomplishment

that he makes in his recovery.

BRAINS CSG Launch Event March 8 2012

Co-founders Jen and Vanda with Raelene

BRAINS CSG Launch Event March 8 2012

Co-founders Jen and Vanda with Raelene & Scott

BRAINS CSG Launch Event March 8 2012

Co-founders Jen and Vanda with Raelene & Scott

BRAINS CSG assisting family carers to find a way through it!

QUESTIONS for the PANEL?