Lily's - NEWS - Very Special Kids
←
→
Page content transcription
If your browser does not render page correctly, please read the page content below
Children’s hospice
and family support
NEWS
Edition 3 | 2020
Lily’s
legacy
FROM THE Bringing help home
CEO As we work towards the rebuild of our new The pilot will conduct 30 support sessions of in-home respite
trialling night shifts, multiple shifts and split shifts utilising
hospice, Very Special Kids remains committed
It is my hope, that one day we will live in Registered Nurses and carers. If end-of-life care is needed
a world were no child is born or diagnosed
to continuing to provide the best care for our families will be offered inhome service and care. Ongoing
with a terminal condition. families during the transition by assessing discussions with Victorian Paediatric Palliative Care Program
Until then as CEO of Very Special Kids it’s my
alternative channels for delivery of services. have been positive and we will continue to take a 360-feedback
approach with ongoing post visit interviews with families and
mission to ensure that every child and their With funding from DHHS we have trialled the delivery of staff and all other stakeholder at conclusion of pilot. Once the
family receives the care and support they need. in-home respite and end-of-life care to a selection of our pilot is completed it will be evaluated to determine if this is
children and families. This pilot objective is to determine viable service to offer not only in the transition of our hospice
Our families face life’s most heartbreaking challenges
whether respite and end of life care can be provided within rebuild but also as ongoing services for the families in our care.
with resilience, strength and an enduring compassion.
the home, as one feasible alternative to the way in which
Our team is humbled to be alongside them through
we provide hospice care during the hospice rebuild period.
these deeply personal and intimate moments of loss,
love and grief.
Which is why we focus on continuous improvement
across every aspect of our work.
Every step of our Hospice Rebuild Project will take a 360
degree consultative approach to ensure that it will be
In-home respite and
able to provide the best care now and into the future.
end-of-life care pilot Impact of pilot for families and staff
The new hospice will not only be world-class with
state-of-the-art best practice clinical facilities to
better support children of every age, size, nationality Each family and staff member that participates in the pilot is invited to share their experiences
and functional capability; it will also reflect the Summary of pilot to date: and feedback from the respite sesssion.
community of supporters who will be at the core of
making this project possible. Together we will need to • 15 Very Special Kids families have been selected to
raise $22.5m to ensure no child or family endures this participate in the pilot
journey alone.
Feedback from families about the benefits Feedback from nurses and carers about the benefits
• Pre-care assessment of family homes for OH&S of receiving in-home care of providing in-home care
Led by our Capital Campaign Committee and and operational considerations have been conducted
• The nurses built a genuine rapport with me and my child • Getting to know the child, their care needs and family
Chairman Andy Penn (CEO of Telstra), consultative • Development of a risk assessment and mitigation plan has so that I felt at ease and confident in their capacity to dynamic in their own environment which helps provide
discussions and briefings have been held with staff, been created to ensure the utmost safety for all involved care for my child better individualised care for future hospice admissions
families, volunteers, local council and neighbours.
Each stakeholder was given the opportunity to review • Staff who will participate in in-home care service (nurses • Providing me with a break knowing my child • Having time to provide comprehensive nursing care
plans, raise suggestions and gain further insights into and personal care workers), as well as allied health staff was being well cared for by experienced VSK staff and one on one attention for a child in a way that cannot
how the new hospice will impact them. We are grateful including physio and play therapist have been selected always be done at the hospice
• Seeing how much my child enjoyed the attention
for the overwhelming support from all those around us • Development, review and update of policies and procedures and one on one engagement with the staff • Feeling rewarded to assist parents/guardians to have
who are ensuring this project will come to fruition. for the delivery of in-home care a break and seeing how grateful they were
• Not having to pack up and transport my child
Current architect schematics are being reviewed • Development of training resources for in-home care staff and equipment to the hospice
by each nurse, doctor and carer to ensure that
the final design meets not only the needs for • Training of in-home care staff
each child but also for those who will deliver care. • Engagement of evaluation consultant to establish evaluation
Architects schematics have been updated to consider methodology, key metrics and data collection tools
all feedback put forward and will be submitted to
town planning. • Discussions with key stakeholders including VPPCP
and Complex Care at Royal Children’s Hospital Our family lives in crisis day to day. Very The most significant impact for my child was
Whilst ensuring we focus on the future, we continue Special Kids coming and giving respite even that she was safe and comfortable at home
to provide 24 hour respite, family support and end of • 7 in-home respite services of care were conducted on
life care across Victoria. This is a very exciting next single day shifts by experienced, senior nursing staff, in for a few hours let our family feel like we’re while she was unwell, while still receiving all
step; one that will benefit families and children for conjunction with a less experienced nurse or carer to test not a family in crisis and stuck in our home the extra attention that she needed and getting
years to come. Thank you for your ongoing support the processes, equipment and documentation for the next few years. And at the same time chest physio from qualified staff.”
in helping us reach this point. • After each visit: our child is not missing out on her care.”
- VSK Parent
Michael Wasley o documentation is updated and improved
– VSK Parent
CEO, Dad and Donor o staff and families are surveyed for feedback
2 vsk.org.au Very Special Kids News 3
Honouring
Lily The Lily Calvert
Foundation
After Lily died on 22 July 2017, Priyanka and Will established The
Lily Calvert Foundation in honour of their daughter Lily. Priyanka
and Will organise and run fundraising events to raise money for
the Foundation with the help of family, friends and their broader
networks. Many small businesses contribute, including major
supporter, Tasmanian catering company Rhubarb Catering;
Prahan Pilates Studio Sum of Us and Sofi Spritz.
The Lily Calvert Foundation will be funding a new music
therapy-informed program at Very Special Kids, called the
Lily Calvert Musical Care Program in honor of Lily and her
love for music. The benefits of music and supportive care
are seen in our current Very Special Kids Hospice Music
Program. The Lily Calvert Musical Care program will now
allow all children opportunities for music throughout their
stay with us. Through this program, all children in the
hospice will have access to music everyday. Previously
budget restraints meant that the children only had access
to music therapy two days a week.
Will and I were like any first-time parents, That’s when we were connected to of some extra time to say goodbye and
we eagerly waited for the birth of our baby Very Special Kids. It was comforting to allowed our family to come and say their
girl. We had decorated the nursery and I know we had options and we could get goodbyes too. ‘Music therapy sessions were our favourite
couldn’t wait to hold her in my arms. But respite and support from Very Special time of every week. Lily just lit up to the
Since then, we continue to be supported
at 36 weeks, after a routine sizing scan, Kids if we needed it. In such an unknown
we were given the news we never could time, knowing where you can turn to for
by their family support and counselling music, it really helped her engage with us.
services. Very Special Kids role in the Music therapy has the power to tap into all
have imagined. The doctor told us there support, means so much.
health system is vital for families going
was a problem with our baby’s brain
through the trauma of parenting a
areas of the brain and it was an amazing
development, and at best, she wouldn’t Lily died when she 10-and-a- communication and engagement tool for
terminally-sick child and ultimately losing
live past 2 years of age.
half-months young. a child. They provide a calm and caring our whole family. We really wanted to be
Nothing can prepare you for being told environment, free-of-charge, for families able to share that joy with other families’
that your child is going to die. Shock, grief, In the end, Lily stayed with us the entire who already have so many medical
love, fear, despair, helplessness, and deep time, she died at home in our arms and expenses and challenges. - Priyanka and Will – Lily’s Parents
sadness. It was completely overwhelming. didn’t go to Very Special Kids until the
Their ongoing bereavement support is also
day after she died. Words can’t describe
Lily was diagnosed with Miller-Dieker critical in helping families cope with the The funding will enable our music program to grow,
this heartbreaking time, the hospice team
syndrome. An extremely rare genetic loss and to manage their mental health by providing resources and training to staff and volunteers
helped to make things a little easier. They
disease and there are only two cases in the days, and years, after experiencing to share music with children and families in the hospice.
gave us use of a special room and cuddle
per year in Australia. We just wanted child loss. It is so comforting for me to We anticipate that the experiences of children in the hospice
cot where Lily stayed until it was time for
to make every second count with Lily, know I have a counsellor, who specialises will be enhanced through daily opportunities for music and
her funeral.
we wanted her to be with us at home in grief and child loss, whenever I need it. supportive musical interactions
for as long as possible. We could stay overnight too or visit her at
any time. This was a precious gift, the gift — Priyanka Saha
4 vsk.org.au Very Special Kids News 5
Meet our Volunteers
Very Special Kids Volunteer Training
Alan Hall, Lucy Nicholson, Margaret Jackson,
In 2019, 89 individuals completed a nine week training 12 years volunteering with VSK 5 years volunteering with VSK 10 years volunteering with VSK
course to be a qualified Very Special Kids Family Volunteer.
My life has provided me with many Very Special Kids is an organisation I am so lucky!!! I have a husband
blessings and times of great joy that has deep connections with the who supports me and two wonderful
and happiness. people it helps. It’s a roll of the dice as sons who work incredibly hard to
to whether life puts you in the position achieve their goals. When I look at all
In a hackneyed phase I jumped at
This training course is designed to equip service to families with children who Very Special Kids Family the opportunity to give something
of needing Very Special Kids’ services, the things our family has achieved I
individuals with the skills and knowledge have a life-threatening condition.
needed to provide support for families Services Volunteer back to community.
it’s very rewarding to be able to help feel blessed. It was for this reason I
Upon successful completion of the those families that do. decided to become a volunteer. It
who have a child with a life-threatening
course volunteers can choose to Very Special Kids Hospice provides Very Special Kids not only cares for was time to give back.
condition. The program supports I’m a Friends volunteer which focusses
support families in the home, hospice respite and end-of-life care to children children with life threatening conditions
everyone involved, from the parents, on the fundraising events that support Very Special Kids had so many
or at the hospital. registered with Very Special Kids. The but it gives their whole family so much.
siblings, to the very special child and Very Special Kids. Though it may opportunities, in so many different
role of hospice volunteers is crucial in I wanted to be part of that.
also the volunteer. conjure images of rattling tins or areas I could become involved with,
In-home Volunteers supporting children, their families and
I am 81 years old. My professional sausage sizzles, this role has brought maintenance, fundraising, family
The training focuses on the hospice staff and they may spend
work was banking, investments and me so many new experiences. I learnt support, hospital visits, sibling days
Home volunteers assist families by time with children playing, taking them
• communication and listening skills superannuation. I retired in 2007.My how to tow the giant pig trailers, and the hospice just to list a few.
offering practical and emotional support for a walk or supporting the hospice staff.
• loss and grief working life was in service industries have been on regional trails across
to family members. A family may request I have dabbled in so many areas but
Very Special Kids provides a range of and learning to serve people was a skill Victoria, painted walls, put on the
• interacting with children a volunteer to spend time with the my true love is the Very Special Kids
services for families, including trained that has helped me in my volunteering pig suit, stuffed envelopes, visited a
registered Very Special Kids child, their Hospice. Each week is different, I get
• how Very special Kids helps families volunteer support. Trained volunteers experiences. People related skills are school, tracked kilometres for the 24hr
siblings or with the parents. to let my inner child out and there
access the supports programs and aim to support families with the practical essential in any role I undertake at Treadmill challenge… always alongside
is nothing better than hearing a
services that are available to them A careful matching process aims to and emotional demands of caring for a VSK and my working life provided the incredible people. The program is
child laugh.
ensure that the volunteer placed with child with a life-threatening condition, opportunity to develop these skills. unique and enables you to choose
All content is reviewed annually by the a family is most suited to fulfilling the as well as families who would like your own adventure! The children and the staff are
Family Support Team to ensure that As a trained Family Support Volunteer,
family’s needs. Volunteers receive support after the death of their child. wonderful, it would be a rare day
the training continues to evolve with I have participated in family home Before volunteering with Very Special
ongoing support and supervision from when I don’t leave feeling inspired or
the needs of the children and families visitations engaging with all the Kids I was not as confident as I am
a member of the Family Support Team, joyful. The love and the support from
we care for. Whilst also empowering family members. In school holidays now and dreaded public speaking.
and families who have a volunteer Trained Very Special Kids volunteers the girls makes my heart sing.
the volunteers to feel comfortable in I participate in Sibling Day activities. However, after spending some time
placed in their home are required to have support families with the practical
either the home, hospice or hospital I also work at the annual Family talking with people in the community Anyone who walks through the door
ongoing contact with a Family Support and emotional demands of caring
environment. The training sessions Christmas Party each year. through volunteering VSK has helped has something to offer and I have been
Practitioner to monitor the placement. for their child.
are run by qualified Family Support build my confidence. privileged to learn from not only the
To learn more about becoming a The volunteer training programs are
Practitioners with special guest from staff, other volunteers but most of all
families, children and other volunteers
Hospital Volunteers family or friends volunteer please outstanding. They not only prepare My grandfather joined the VSK
from the children.
visit vsk.org.au volunteers for effective service, they committee in the late 1990s barely
to provide first - hand stories and At The Royal Children’s Hospital and contribute to worthwhile personal 10 years after it had been established. Volunteering helps to give my life
experiences with potential new Monash Children’s Hospital, a team of growth and development. He loved working with founder Sister perspective, the people I work with
volunteers. Each training class is capped trained volunteers is rostered to visit Margaret Noone in those early years, make me feel respected, loved, and
to ensure that lessons are interactive The volunteering opportunities at VSK
children registered with Very Special helping to secure VSK’s future. Today, valued. The children make my heart
engaging and allow for the team to truly are many and varied, providing a wide
Kids. Hospital volunteers visit on request my sisters and I all volunteer with Very sing and remind me that I should not
get to know each potential volunteer to range of duties from. The team are
of the families and may spend time with Special Kids - I like to think of being let life become too serious.
determine their potential for placement professional, welcoming, friendly, warm
the unwell child, siblings or parents. actively involved with VSK as carrying
with families we care for. and inclusive. A wonderful working
Volunteers can also spend time with on an important family tradition.
atmosphere has been created in its
Our volunteers are a crucial part of the the unwell child while the family have
charming heritage listed property for
Very Special Kids team provide invaluable a break from the hospital.
the Families, staff and volunteer army.
6 vsk.org.au Very Special Kids News 7
How to get There are many ways that you
can support Very Special Kids so
we can continue to provide our
involved invaluable services to families
free-of-charge.
$
Make a regular tax Collect donations Leave a gift in Ask for donations
deductible gift in a piggy bank your will in lieu of gifts
Monthly, quarterly Work, school or home Ensure your legacy Birthday, wedding, bar/
or yearly lives on bat mitzvah or any
other celebration
$
$
Volunteer Develop a corporate Organise your own Attend or support one of
partnership fundraising event our fundraising events
In the hospice, hospitals,
with families or help with Sponsorship, cause-related A fun run, trivia night, Piggy Bank Appeal, 24 Hour
fundraising and administration marketing, workplace food and wine function, Treadmill Challenge, Footy
as a Friends Volunteer giving, volunteering or movie night, concert or Fever Debate, Golf Day,
in-kind support fashion show Ladies Lunch, Annual Fair
and Fashion Sale
Make a donation
www.vsk.org.au
Mail a cheque or money order
payable to Very Special Kids,
321 Glenferrie Road, Malvern,
Victoria, 3144.
Call 03 9804 6222
03 9804 6222 321 Glenferrie Road Malvern 3144 ABN: 86 109 832 091
mail@vsk.org.au vsk.org.au
You can also read
