£230,000 for Berkshire’s first children's hospice
Alexander Devine was four when he was diagnosed wtih a brain tumour.
Fiona and John, Alexander’s parents said: “Once given a diagnoses like this, about your child, the grieving process starts immediately, your whole world is consumed by hospital appointments, doctors, nurses, operations, treatments, scans, stays in hospitals, etc. You are on an emotional roller coaster that you have no control over and cannot get off.”
Alexander endured four and half years of operations, treatments and therapy, before losing his fight for life at the age of eight.
In memory of Alexander his parents began a long battle to improve local support for children with life-limiting conditions, including the building of a dedicated childrens’ hospice.
Alexander Devine Children’s Hospice Service currently provides a dedicated service for children with life-limiting and life-threatening conditions, supporting the children and their families in their own homes, providing respite, emergency and end of life care, as well as sibling and bereavement support through The Alexander’s Care Team.
The service currently supports over 70 children and their families, has taken over 54 direct referrals since November 2013, has provided over 830 hours of respite care and supported 8 children through to end of life.
In 2012 there were over 600 children in Berkshire with life-limiting or life-threatening conditions. There is a desparate need for a hospice to help both the children and their families.
The NHS acknowledge the need for a hospice to give flexibility to the family, who can decide whether to receive care at the hospice or at home.
Alexander Devine Service works with The Royal Berkshire Hospital. Both organisation can therefore provide a ‘joined up ‘service, with a smooth transition of care from one professional to another. For families this means that time and emotional stress is reduced as they know that all parties fully understand their child’s condition and the care and support that they need.
The new £5m Alexander Devine Children’s Hospice, to be built at White Waltham near Maidenhead, will provide six bedrooms for children (aged 0-19 years) and overnight accommodation for parents. As well as all the necessary care facilities, there will also be a hydrotherapy pool, music and sensory rooms, games room, a Creative Learning Zone, and a large kitchen and dining area where families can socialise and eat together.
The new hospice will be open to families in spring 2017.
The Trust has pledged match funding of £230,000 towards the hospice on behalf of children from West Berkshire.