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Families affected by a child's brain tumour (brain cancer) are 50% more likely to be affected by the cost of living crisis
by Dianne Parkes in Witney, England, United Kingdom
SUMMARY:
We need to develop new enterprise initiatives and positive mental health strategies to help our community become more resilient. We need to illustrate what causes some families to disproportionally suffer , promote understanding of cultural & religious difference, promote collaborative working & sharing of ideas.
A child’s brain cancer diagnosis has a profound & adverse impact on family: emotions, wellbeing, sense of identity, friendships/socialising. Evidence via our Focus groups, community groups, support groups, charity partners & NHS contacts illustrates a need for talking/listening projects rather than receiving a bunch of NHS information leaflets.
WHAT WE'D LIKE TO DO:
To offer mentoring sessions to families to support their health & well being & to create a series of positive documentaries to improve quality of family life (with an emphasis on the BAME community). We’ll also create 90 sec social media films, reaction videos, podcasts, digital posters & marketing communications & online information. The project aims to document the emotional & spiritual journey for families struggling during the cost of living crisis (rather than address the issues of brain cancer) especially for ethnic families fighting the stigma of having a ‘non normal’ child & having to cope with cultural & religious beliefs
KEY AIMS:
To look at experiences of families struggling to cope with childhood brain cancer and the cost of living crisis. To strengthen connections & relationships with other charities & partners & enhance collaborations.
It will build organisation stability by helping us to collaborate working with other partner organisations, in particular we need to focus on utilising these materials to engage corporate partners who will help to build financial stability for our small charity and release us from the constant need to raise funds allowing our trustees and senior management to be able to focus on expanding our charitable services.
Additionally, we have pledged £150,0000 to find more gentle & less toxic treatments for childhood brain cancers. We need raise funds to make a 5 year commitment to work with our partners at The Brain Tumour Charity
"When we ran out of oil we had to put heated blankets on Anastasia as she was turning blue"
The family saved £1,000 to make Anastasia's last Christmas special but that was eaten up beforehand with food & heating costs
For Tristan's little brother there was no hope. Tristan lost his whole family when brain cancer ripped his family apart & caused suffering no family should have to bear
Children with brain cancer are frequently robbed of their eyesight, hearing, mobility, co-ordination, mobility & voice. We do our best to lessen the devastating impact on families but we lack the resources to cope.
ABOUT US:
Twelve years ago, a legacy began. Around a kitchen table, the loss of 10 year old Joss to a cruel brain cancer sparked what would become Joss Searchlight, one of the very few national organisations supporting all families affected by childhood brain tumours, malignant & non malignant. There are some 16 support charities in every county of the UK to support adults with one of the ‘big 5’ cancers but we're one of the very few charities supporting families affected by child brain tumours. We hold a unique position in the brain tumour community. The lived experiences of our trustees & senior management, together with our 'Common Experiences' program gives us an extensive understanding of our family community. We are supported by 44 incredible volunteers.
SITUATION:
Chills, fever & persistent coughs are common for children with brain cancer
The COL crisis is having a devastating impact on the 1,600 families in the UK struggling to cope with a child’s brain cancer. Every day, families are contacting us struggling to make ends meet. Over three quarters of families have one parent who had to cease work in order to care for their sick child, in 18% of families both parents have to stop work completely & are completely dependent on benefits for their household income.
Parents make huge personal sacrifices to support their critically ill child & family members frequently experience poor life outcomes & risk living in poverty.
Parents often feel isolated by the relentless trauma & feel they can no longer cope, some are in the heartbreaking position of being unable to provide for their family.
COMPLICATION:
Brain cancer families face high financial costs averaging at an additional £730 per month.
Following a brain cancer diagnosis Dylan, a fun loving 4 year old was unable to even hold up her own head & needed specialist equipment.
We need to raise more funds to cover the rent of medical equipment, e.g. electronic wheelchairs (at £75 per week).
In additional to the COL crisis, families face out of pocket costs such as specialist equipment not funded by the NHS, nutritional supplements for side effects of chemotherapy, nutritional foods to maintain weight, transportations, hotel bills, loss of employment affects families very significantly. After cancer treatment has ended, it is very difficult for the parents to find new employment or return to their previous jobs. Many families have to live on their children’s disability allowance.
SOLUTION
We know it takes huge courage for families to ask for help, so we work with families to help them find solutions.
It’s vital that we have the resources in place to give families the urgent support they need to face the immense challenges ahead. We’ll provide free, compassionate, confidential support , for as long as a family needs it. We want to make sure that no family has to face this devastating situation alone.Families are able to access the ongoing support of a Support Worker, receive guidance & referrals to other service providers . Our project seeks to help with finances, wellbeing, food, bedding & essential items. This enables us to provide meaningful, tailored support to help navigate the COL crisis.
On average we estimate every family helped will be £5,000 better off per annum.
Key Aims.
Alex’s daughter Anastasia was diagnosed with an incurable brain cancer and given perhaps 12 months to live. Anastasia’s parents chose to keep the family together by caring for Anastasia at home. Alex said that even as her daughter’s condition deteriorated she was struggling to afford to keep the heating on due to the cost of living crisis.
Alex (a support worker) speaks of her own personal crisis after her daughter Anastasia was diagnosed with a deadly brain cancer.
“The cost of living just skyrocketed,” Alex said. “We’ve had to turn the heating off twice. We just want to spend time with her but all my time was spent worrying”
“Anastasia was getting towards the end of her life and we were still having to rattle around for money. Our heating went gone off twice as we had run out of oil. It was just impossible.It got so bad we were all camped in her room with a wood burner. We were throwing wood on the fire to make the room warm enough to get through the night.When we ran out of oil we were having to put heated blankets on Anastasia because she was turning blue. There are weeks when we can’t afford basic things. ”
Children with life changing & life limiting cancers & their families deserve to feel supported. Please help us make a difference. Thank you.
Visit our website www.josssearchlight.org.uk or email [email protected]
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