More families with seriously ill children will be able to access vital information and emotional support, thanks to a grant of £40,000 from Bristol Freemasons to Together for Short Lives.
Our free-to-use specialist helpline is staffed by trained experts who are highly experienced in dealing with the sensitive issues these families face. It also provides a key entry point to the other elements of our Family Support Hub, where parents can access practical and ongoing support in key areas such as legal advice, financial grant referrals, and advice and signposting to local services and support.
There are also online peer-to-peer support groups, which help to reduce isolation and improve wellbeing by connecting families with one another.
As well as coping with the enormous emotional stress of knowing their child will die young, many families struggle to navigate a maze of health and social care services and miss out on getting vital support for their child and themselves. It is exhausting, confusing and isolating, which is all the more heartbreaking when time is so precious for these families.
COVID-19 exacerbated the isolation and anxiety these families face. Many were shielding their child long before lockdown and will continue to do so for the foreseeable future. Calls to the helpline were at an all-time high following the first lockdown, with four times as many calls as in the previous year.
Caring for a seriously ill child is an emotionally and physically demanding time. About 75 per cent of families caring for a disabled child experience anxiety, depression or breakdown due to isolation, and mothers of a life-limited child are 50 per cent more likely to die prematurely themselves.
The overall prevalence of life-limiting conditions in children and young people in England has nearly trebled in the last 20 years, with a a corresponding increase in calls to the helpline, with more than four times as many families calling in 2020 compared to 2017.
The prevalence of life-limiting conditions in children and young people is disproportionately high among families from black and minority ethnic backgrounds and those from lower socioeconomic backgrounds.
The grant from Bristol Freemasons comes through the Masonic Charitable Foundation, which is funded by Freemasons, their families and friends, from across England and Wales.
Dr Helena Dunbar, Director of Service Development and Improvement at Together for Short Lives, said:
“We’re enormously grateful to Bristol Freemasons for this tremendous grant which will help us to continue supporting families of seriously ill children. The number of children with life-limiting conditions is growing and we want to reach and support as many of these families as possible so that they know they aren’t facing everything on their own.”
A spokesperson from Bristol Freemasons, said:
“When a child’s life is expected to be short, there’s no time to waste. I’m very pleased we’ve been able to support Together for Short Lives, who do fantastic work with families of very seriously ill children. This is every parent’s worst nightmare and it’s a huge comfort and relief to them that this wonderful charity will be there for them every step of the way.”