What inspired you to start your new role as Engagement Officer with Ty
Gobaith / Hope House?
Having known families that have used Hope House/Ty Gobaith previously and
working in local schools Hope House/Ty Gobaith has been known to me for many
years.
Having read the heartbreaking story of
Hope Peachy which led to the mission ‘Because no one has to face the death of a
child alone’ and the hospice ‘Hope House’ that opening its doors in 1995. The role advertised was something that grabbed
my attention as it enabled me to reach out to families that may not be
accessing the amazing hospice services, especially those in underrepresented
communities.
My passion for helping families and
children has been with me since I left school. I spent 20 years in education
specialising in ALN after my degree, during study I focussed on children and
families from different communities and areas of deprivation researching the
difficulties that some may face.
I set up my own business helping children and
families that require social and emotional support when I had to
home-school my own daughter, who was unable to access education due to her ASD
and sensory requirements. This allowed me to personally seek out the support
groups and find out what support is out there, and has come in very useful in
my role now. I am a people person and thrive on meeting others and being in a
position to hopefully signpost them to support, and work alongside likeminded
individuals.
Can you describe the
type of support that Ty Gobaith / Hope House is able to provide?
Both Hospices provide a number of different types of
support these include
Respite Care
Our respite service gives families a much-needed
break from their daily caring routine. The number of the visits to Hope
House or Tŷ Gobaith depends upon a number of factors, including the current
health of the child or young person. No charge is ever made to families.
All families are invited to stay at the hospices
with their sick child and they may do as much, or as little, of their care as
they wish. Siblings, grandparents, aunts, uncles and close friends are all
welcome. They are encouraged to make themselves at home, relax, join in
activities or spend time talking to team members about any fears and concerns
they may have.
Some families choose to bring their sick
child to Hope House or Tŷ Gobaith while they go away for a break or
spend time with healthy brothers and sisters. Arrangements can be made for
friends or family members to visit the child or young person while they are
staying with us, and families may contact us at any time.
Care for Young Adults
We can support a young person up to the age of 25
years when it is felt that Hope House Children's Hospices is the best choice to
offer them care.
If a young adult has a longer life expectancy,
we will work with the family and local adult services to help to find
appropriate services for the future and will ensure that the family feel
supported through transition.
Antenatal and Neonatal Support
We are able to offer support to families whose baby
has been diagnosed with a complex or life-threatening condition during
pregnancy, who has been born from 24 weeks with a life-threatening condition or
who has sadly died.
End of Life Care and Immediate Care After Death
Our care for a child or young person at the end of
their life includes symptom management and additional support for family
members and carers before, during and after death.
We will do everything possible to meet the whole
family's needs and wishes during this very difficult time. We are experienced
in talking to families about care planning for end of life and will work with
other professionals involved with the family whenever possible, if families
wish.
Our immediate care after death can take place at the
hospices or within your own home. We have the equipment and the
skills so that families can spend time saying goodbye in their own way and
in their own time.
Counselling and Bereavement Support
There are times when we all encounter difficult or
painful experiences which we need to talk through with someone else.
Counselling offers a safe, confidential space where you are listened to,
accepted and understood. A space in which to find a way forward.
Counselling and bereavement support is available to
families using Hope House and Tŷ Gobaith. It is also available
to anyone living in Shropshire, Cheshire, Mid and North Wales who has been
affected by the death of a baby, child or young person up to the age of 25
years when they died in any circumstances.
Our counsellors are professionally trained and offer
help to children, young people, adults, couples and whole families. Our service
is free and confidential and Accredited by the British Association for
Counselling and Psychotherapy.
Sibling Support
Our sibling support team offer support and
fun to brothers and sisters of children using Hope House or Tŷ Gobaith.
This includes age-specific activity days and outings
where siblings can meet up and share concerns with others who truly understand
what it is like to live with a brother or sister who has a life-threatening
condition.
Who do you primarily
work with, is it just children?
Hope House offer a holistic way of looking after
children, so although we look after the children whilst they are at the hospice
we also offer support the whole family. This includes the services I have
mentioned above. But also our key workers provide information on other services
and events within the local community to help them connect to these.
Tell us a little bit
about your end of life support, what services do you provide?
End of life support at both Hospices centres around the child and the
family, as well as symptom management. Everything is done to ensure the
family’s needs are met, we also work alongside other professionals to ensure
that planning for end of life is met with ease. Both Hospices have a family
room which enables the family to stay with the child at the end of life. This
also has its own kitchen and outdoor area so the family have space too.
Additional support services are also there for the family such as are social
worker and care team.
Does someone have to
be recently bereaved to be able to access support?
No, not at all, we all have our own time when we
feel we may need support. Some may not want to access support straight after
their child dies. Everyone is different
and may require support at different stages.
Can you tell us a
little bit more about your snowflake suite?
The Snowflake Suite allows families to say goodbye
to their children in their own time.
Families mustn’t be rushed to say goodbye, in the
midst of grief families can visit the snowflake suite as often as they wish and
invite others to say goodbye, with as little or as much input from our team as
you wish. It’s a quiet, tranquil suite where you can say goodbye as you wish.
Who might benefit from
your cuddle cots and cuddle blankets?
Any family that wishes to say goodbye to their child
in their own surroundings would benefit from the cuddle cot which is suitable
for babies and cuddle blankets which are for older children and young adults.
Maybe they can’t access the hospice due to do travel difficulties, or for
cultural reasons it may suit the child remaining at the family home.
Which areas in Powys
do you cover?
We cover ALL of Powys
Powys is a large
county, do you provide any practical support to help people?
We aim to provide as much practical support as possible. Also our social workers
and sibling support take the children out on days out or visit them at home.
Our respite care and end of life care is at the hospice itself. However,
Hospice staff do attend the family home for immediate after life care. Our
counselling service is accessible online or at any of our counselling rooms.
Our social workers and community engagement team can also signpost to other
services.
What barriers might
prevent people from accessing your support and how do you work to overcome
those?
Travelling to the hospice can be a huge barrier for
most families. Which is why we also offer outreach support in some of our
services. My role can also provide information to families about other services
or funding in the area to help.
Cultural and religion, some may not think of using
the hospice as it doesn’t fit with their beliefs. Hope House/ Ty Gobaith are
culturally sensitive and are experienced to respect the families’ beliefs and
make them feel as welcome as possible. We can offer a translator service if
language is a barrier. we aim to find out what people require from Hope House/
Ty Gobaith and meet their needs. I have recently been on training in working Polish
families to understand their needs and culture, which I will continue to do
with any other communities.
Are there any groups
of people in our communities that you feel are harder to reach than others? How
are you trying to engage with them?
Yes, as above I feel that cultural differences can
be a barrier, some communities may feel that a hospice won’t be able to provide
for their needs. My role is not just to go out and promote what Hope House/ Ty
Gobaith does, but also ask what can we do to enable us to be more accessible
for these communities? and why they aren’t accessing the support provided.
Recently I have been looking at our leaflets and asking different communities
what they feel they need. Counsellors that are fluent in their own language is
something that is currently being looked at.
In what ways do you
provide support and care for families?
As well as the services I have
included above, we also link in with other support groups that offer events,
advice and networks for families. This can also help families that live in
rural areas too due to the more online events taking place. It can also help
connect families that may live local to each other. The social worker and my
role can help families find out about organisations that can help with deal
with day to day living issues that can arise, such as financial or housing
difficulties.
Every family is
different in their needs, are you able to tailor support to meet their needs?
Yes, we treat each family uniquely to their needs
and wishes. We continue to seek information from other communities on ways we
can continue to improve our services and ensure we are helping all families
that require our support. My role often involves attending cultural events to
meet and speak to other and be educated on what people require from Hope House/
Ty Gobaith.
Do you work closely
with any other organisations or statutory services to provide support to
people?
We work alongside other
organisations within the community, PAVO have been fantastic at sharing the of
other organisations that can help our families but also ensuring people have
and full understanding of the support we can offer. We have close links with Betsi Cadwaladr, all the councils within North Wales and mid Wales including family
information centres ensuring that information can be passed on at ease if a
family does require our support. We also work alongside the Maternity units and
have our Neo Natal Nurse attend ward runs so we can get to know families early
on and enable us to build those relationships from early on.
Is there a set time
frame or length of time for accessing support?
No, the time can vary from family to family. We have
families that attend our memorial services for many years after their child has
died as their connection with Hope House/Ty Gobaith offers them comfort. We’ve
also had grandparents accessing our bereavement counselling, years following
their grandchild’s death as that was when they felt they needed the support.
What is the most
important message or piece of advice you’d like to give to our communities in
Powys?
That the word hospice doesn’t necessarily just mean
end of life care. We care for children with life limiting conditions, early
intervention from a referral can mean that family having access to the care
Hope House/ Ty Gobaith provide early on. Also anyone in the family that a child
has died can access our bereavement counselling.
What’s the best way
for someone to contact Ty Gobaith / Hope House and to be referred for support?
Anyone can refer to Hope House/Ty Gobaith whether it
be a professional or a family member or friend. However, all we ask is the
Child’s family are fully aware of the criteria and they agree to the referral
please contact care@hopehouse.org.uk or care@tygobaith.org.uk or call Hope House on 01691 671999 or Tŷ
Gobaith on 01492 651900.
I am also happy to be contacted if someone wants
more information on how we can reach out to families about the work of the
hospice.
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