Easing the anguish when life's journey is a short one
By Annemarie Field
There is a saying that nobody should ever have to lose a child and, as a parent myself, I can only imagine it must be the most painful, distressing, desperate and desolate journey for mothers and fathers.
But it’s a sad fact of life that around 6,000 children and young people die each year in the UK and here in Sussex there are potentially 1,000 children and young people with progressive life-shortening conditions.
Helping to ease the many facets of heartbreak along that journey is the Chestnut Tree Children’s Hospice, which provides a range of services for newborns, children and young people with life-shortening conditions, and their families.
Like most people in Eastbourne, I have seen the bright yellow Chestnut Tree slogan and thrown a few coins in a bucket. But when I was given the chance to take part in the fundraising Chestnut Cambodia Trek, I was allowed to go behind the scenes of the hospice, tucked away in isolated grounds off the A27, and learn more about the charity.
Initially it was a trust set up October 1997 to fund and support the local palliative care network.
In time, Chestnut Tree House was born and the purpose built hospice itself cost £5 million to build – the majority of the money donated by and raised from people in Sussex – on land given by Lady Sarah Clutton, who sadly died in June last year.
It was opened in November 2003 by Princess Alexandra and is still the only children’s hospice in Sussex.
Both the trust and hospice have gone from strength to strength and currently care for 300 life-limited children, both at the hospice and in families’ own homes.
Life-limiting conditions – meaning the children are not likely to reach adulthood – include disorders such as muscular dystrophy, spinal muscular atrophy, multiple disabilities, cancer and progressive genetic disorders.
The hospice offers specialist short breaks, emergency and end of life care, support, advice and information and care of families after the death of a child or a young person.
It has its own hydrotherapy pool, a multi-sensory room, music and computer rooms, and space for art and play therapy. It is a noisy and buzzing environment where the children have a lot of fun, but there are also quiet areas for contemplation and relaxation.
There are six bedrooms where care is provided for younger children – from newborns to 12-year-olds. Each room is decorated to appeal to children and has a range of entertainment and special equipment.
The Young Adults’ Wing consists of four bedrooms and a common room, all designed to appeal to the young people the hospice supports, complete with a juke box and video games.
There are also eight family bedrooms with en-suite facilities, plus a fully adapted bathroom equipped for disabled use.
Families have their own lounge and kitchenette, as well as a decked balcony overlooking the garden.
A stay at Chestnut Tree House gives them the opportunity to rest and relax in the knowledge that the hospice care Care Team is looking after their child downstairs.
Caroline McCullogh is the hospice’s clinical nursing manager and has been there for 12 years.
“The hospice provides support for the whole family offering psychological support, care following bereavement, end of life and respite care, and sibling support,” she said.
“Our skilled nurses and care support workers provide care at the hospice or in the home. Families can stay in the special family accommodation at Chestnut Tree House or leave their children in the capable hands of the Care Team while they take a few days’ break. There are also activity days and outings during the holidays for the children and their siblings.”
One of the families currently using Chestnut Tree House and its services is the Ferriers.
Russ and Mary Ferrier, both teachers, have nothing but praise for the hospice and the care and support staff provide for them and their 10-year-old son Charlie, who has cerebral palsy and epilepsy, is unable to walk or sit unaided and suffers seizures throughout the night.
The family has spent four days at the hospice on a short break.
Mary said, “Charlie feels totally at home here. And when we come it is the only time we can completely switch off knowing he is happy and well looked after.
“Charlie wants to be fiercely independent and he loves it here. He loves swimming in the pool, the music room.
“It’s nothing like you imagine a hospice to be. And we appreciate the time to relax as a couple.”
Supporting families is just one aspect of the trust’s work; they are also there when a child dies.
“When a child or young person dies, whether at home, at the hospice or in hospital, families are offered the use of a bereavement suite, Stars,” said Caroline.
“There is a cool room where the child can remain for as long as the family wish or up until their funeral. The suite has its own private external access via a secluded garden. We help support the whole family in their choices of care and necessary arrangements after the death of their child with dignity and respect.”
The in-house care team at the hospice includes a consultant, GPs, nurses, activity leaders, a chaplain and family counsellors
Community services is another part of Chestnut’s work. The community team is the first point of contact for families wanting to use Chestnut Tree House and in addition, specially trained staff visit families in their own homes to care for the sick child or young person.
All this of course costs money: the hospice costs more than £3.5 million per year to run.
Families are never charged for their care and less than 7p in every pound is funded by central government so it relies heavily on the generosity of the people of Sussex.
And that is why Chestnut has several fundraising events each year. Next month will be the annual Midnight Walk in Eastbourne, there are regular quiz nights, open gardens, golf days, sponsored swims, runs, cycle challenges and even skydives to raise money.
The largest event next year is Chestnut’s Cambodia Trek from November 11-19 which I am currently in training for.
There are still places available and anyone interested in joining us on this worthwhile trip of a lifetime can visit www.chestnut-tree-house.org.uk to find out more.
It promises to be fun and all for a great cause.
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