FOR 20 years The Sussex Snowdrop Trust has had one mission – to provide care at home for children with life-threatening and terminal illnesses.
In its anniversary year, chairman Diana Levantine takes a look at the changes that have taken place and some of the ‘amazing’ families and volunteers she has worked with.
The Sussex Snowdrop Trust was founded in 1993 after a request for funds from Dr Ann Wallace to the Friends of Chichester Hospital.
“There was no paediatric community nursing at that time,” said Diana.
“Dr Wallace had been doing research, talking to the families, writing it up and putting forward what the families needed. They wanted more information about their children’s illnesses – we didn’t have Google in those days – and they needed the support of a nurse who could talk for any length of time and be alongside them throughout the illness.”
Unfortunately, because of restrictions on their constitution, the friends were unable to help.
However, Frank Snell, Kate Shaw and Diana were members of the committee and decided, if there was such a desperate need, they should start a charity to provide care for children at home.
“And that is how I am left holding this beautiful baby,” said Diana.
Initially acting as co-chairman and co-founder, Diana later became chairman and an unpaid charity director.
“I am very busy but that is my gift, that is my pleasure,” she said.
Since its founding, the trust has grown with a committee, trustees and, six years ago, the opening of an office to run as a business centre.
Working hand-in-hand with the NHS and St Richard’s Hospital, Chichester, the trust is referred patients by Dr Wallace.
Currently working with 62 families, Diana said the trust would never turn away a child requiring care at home.
However, with the rewards of working with children come challenges.
“We do lose children,” said Diana. “We lose two or three children a year.”
However, advances in treatments mean, for many children, treatment is becoming more effective and specialised.
“It has come on leaps and bounds in 20 years,” she said.
One area where Diana has seen particular advances is in the detection and treatment of cystic fibrosis.
“Children with cystic fibrosis survive to adulthood, whereas 20 years ago it was less likely because it wouldn’t have been picked up at birth,” she said.
All the Snowdrop children are cared for by six nurses and two nurse support care workers – led by Jane Evans.
The nurses and support workers offer a range of help, from taking blood tests at school to full-time care.
“We keep in regular contact with parents and families,” said Jane.
“We talk to them about the illness, give advice and information about the condition and the care a child requires. And we provide 24-hour end-of-life care.”
Snowdrop also provides a counsellor, Phil Portway, who Diana describes as a ‘best friend’ to the families.
“He is the one that will go and sit beside them and have a cup of tea and talk it all through,” she said.
The care at home team is also boosted by Snowdrop volunteers. They help in any way they can, taking siblings for a day out or driving children to hospital appointments in London or Southampton.
“In 20 years we have put together this remarkable team of very dedicated people that the families rely on,” said Diana.
The trust, in turn, relies on the support of fundraisers to allow it to continue caring for children and their families as it is not eligible for most lottery or grant funding and needs to raise £350,000 a year to keep running.
Thanking everyone who has made a donation or organised a charity event, Diana said: “This community is hugely generous.”
Last weekend, Snowdrop held one of its biggest fundraising events of the year – the Annual Arundel Charity Walk.
Hundreds of walkers took part in the walk, with many of those attending Snowdrop families, both past and present.
Not only will this money, and money from other events like it, go towards paying for the wages of the care at home team, it also allows the charity to provide financial support for families whose children are undergoing hospital treatment.
This can take the form of petrol vouchers or help to buy essential goods.
“Some mothers drive 120 miles a day going to see their little one, and they have two other children at home, it is overwhelming for them,” said Diana.
“We can help with anything, washing machines, tumble dryers, anything the team says is needed.”
The trust also holds a party each year for the Snowdrop children and their families.
This allows Diana to enjoy one of her favourite parts of working with the trust – spending time with the families.
“It is knowing the families and meeting up with the families and knowing that the nurses and the team have made a huge difference to them,” she said.
As the trust celebrates its 20th year it seems its motto ‘Love, support, hope, care’ will bring relief to families for many more years to come.
For more information on the work of the trust visit thesussexsnowdroptrust.com.