Sebastian’s Action Trust is to receive a £362,356 grant from The Big Lottery Fund, enabling the charity to continue its outreach work for a further 3 years, to provide social, practical and emotional support for its beneficiaries.
The grant will enable further expansion of the outreach service the Trust has developed since 2013 from an initial Big Lottery application. The funding will additionally cover the inclusion of befriending and counselling, adding further scope to the Trust’s range of services.
Jane Gates OBE, CEO of Sebastian’s Action Trust, says “We as a charity are extremely happy and excited to have the continuation of this much needed fund. The relief is immense to know we have this opportunity for growth and that support for our beneficiaries will continue to thrive under our careful stewardship.”
The Trust’s outreach service supports over 450 families covering the five counties of Berkshire, Buckinghamshire, Hampshire, Oxfordshire and Surrey. Within its holistic model of care the service provides direct support to individuals within the family and as a whole unit, including parents, siblings, grandparents and other significant carers to help aid their journey through their child’s illness from diagnosis, through treatment and beyond.
One such family is the family of Frankie Lockart, who is 13 years old and has Cystic Fibrosis and Type 1 Diabetes. Upon diagnosis, a whole new world of hospital appointments, schedules and regimens were thrust upon the family, making a new normal for them individually and collectively.
“Coming to terms with the diagnosis was probably the hardest part” says Mum Michelle. “As well as having to understand what the diagnosis meant, I had to quickly learn about the administration and side effects of life long medication. Frankie was relying on me, but I was having to also deal with my own emotions.”
The family were put in touch with Sebastian’s Action Trust at the point of Frankie’s diabetes diagnosis. They were allocated an Outreach Worker, who worked closely with the family to walk alongside the family as they came to terms with the diagnosis and the new routines.
“Our Outreach Worker is a fantastic listener; she comes with me to hospital appointments and then after the appointment she takes the time to chat through what was discussed. She helps to keep me grounded and look at the whole picture and not go off on a tangent. When I have new forms to fill in, Sue is on hand to help make it easier and clearer for me. I don’t have to over explain to Sue. She makes me feel like I am not alone.”
Frankie’s younger sister Elisse, who is 10 years old, has also struggled with the impact of the diagnosis. As the family focus has inevitably been on her sister, Elisse’s behaviour has shown tendencies towards anger and aggression. Outreach Worker Sue has been instrumental in providing one to one support to Elisse, giving her time and ensuring she feels listened too whilst helping to ease the burden on Mum Michelle.
Funding of the outreach project by the Big Lottery enables the Trust to continue to meet the ever evolving needs of seriously-ill and life-limited children together with their families, through every day challenges and their darkest times when they need help and support the most.