It has been five years since the only dedicated children’s hospice in Sussex opened its doors.

Health Reporter SIOBHAN RYAN looks at how it has turned into a vital service for hundreds of families across the county and its plans for the future.

Lauren Thomas-Chapman needs constant 24-hour care.

The 13-year-old is unable to walk, talk or sit up on her own and is fed through a tube in her stomach.

She was born with the rare neurological condition called Agenesis of the Corpus Callosum (ACC) which means a section of her brain has not developed properly, leaving her with severe disabilities.

Her mother Nicky Chapman, 38, has two younger children, Olivia, eight, and Louis, five, who have no health problems.

She and her husband Jamie Thomas, 33, dote on their family but taking care of Lauren is a full-time job. This is where the team from the Chestnut Tree House children’s hospice come in.

Staff are able to provide respite care and vital medical support for Lauren and her family, who live in Durrington, Worthing.

Nicky said: “One of the greatest boosts is that once a year we are able to leave Lauren in the care of the hospice and take a holiday with the younger children.

“Ordinarily we would be worried about leaving Lauren but we know the team are able to cope and this gives us peace of mind. It means we are able to give the other children some time and attention they need as well.

“When Lauren stays at the hospice she is not left to her own devices but gets one-to-one attention.

“She has been coming here since the hospice opened so everyone knows her very well.

“There is also a lot of support given to the families as well. Our younger daughter was taken on a camping trip with the hospice and we know we can get help and advice at any time.

“The place is an absolute lifeline for us.”

The Chestnut Tree House hospice was opened in November 2003, following a major fundraising campaign.

It was given land in the heart of the countryside belonging to Lady March, at Poling, near Arundel, for a peppercorn rent.

It offers specialist palliative care to children and young people suffering from life-limiting and life-threatening illnesses, plus practical and psychological support for their families.

Specialist nurses and workers can provide day or respite care at the hospice, ranging from a few hours to a few days. Families can choose to stay with their child or go away for a break.

There are also activity days and outings during the holidays for the children and their siblings.Activities on offer include a hydrotherapy pool and spa, multi-sensory room and music and art therapy.

However, the real aim is to create a home-from-home environment.

Toys lie scattered around the floor, children run around laughing and shouting and teenagers are engrossed in the latest computer games.

Caroline McCullough, a team leader of the hospice’s care team, has been working at the hospice for five years.

She said: “Over the years we have had more and more children getting referred to us as word gets out about our services.

“The most satisfying element of this job is that we are able to spend so much time with the children and their families.

“Not only do we provide the basic nursing care, we are able to get to know them, spend time with them and do nice things like playing, going swimming or taking a visit to a cinema.”

Volunteer Dee Willmott, 62, from East Preston, regularly works on the hospice reception.

She is a retired teacher who moved to Sussex to be near her father, who subsequently died from cancer in 2002 at St Barnabas House Hospice in Worthing.

When she heard about plans to open a children’s hospice she decided to get involved and give something back.

Dee said: “I was working and helping out here before the furniture even arrived and so it has been wonderful to see how much the place has grown and developed.

“When people hear what I do they say they don’t know how they would be able to cope with working in a children’s hospice but it is nothing like that.

“This is a positive and happy place and feels like a real home from home.”

Need for funds

THE hospice has ten beds but only five of them are in use at the moment.

The aim, says chief executive Hugh Lowson, above, is to carry on opening up one bed a year until the hospice reaches its full capacity.

At the moment it is caring for up to 200 children and their families but has the potential to double this.

However, it is a challenge. The hospice costs almost £2 million a year to run but is not part of the NHS so relies on the support of the community to keep going.

Mr Lowson said the hospice was committed to expansion but finances were limited.

He said: “We are enormously grateful to our supporters over the years who generally raise around £1 million a year to help keep us going.

“We were given £200,000 from the Government as part of a grant but that runs out next year and we are not sure what happens after that.

“We are continuing to lobby and push for more secure long-term funding from the Government.

“It is such as shame. We have the potential to open up more beds and care for more children but financial restrictions mean we are not in a position to do so.

“We would need another £1 million worth of funding if we were to open all ten of our beds.

“If we had that sustainable income coming in through Government funding we would be able to open more beds more quickly.

“I am tremendously proud of the work we have done over the last five years and I hope that when we come to mark our tenth anniversary we will be able to show we have every bed open and are working at full capacity.”

How can you help

  • Over the years there have been many fundraising events and activities at the hospice.
  • Sometimes they are long-term campaigns such as Jack’s Birthday Wish, which was set up in memory of Jack Blunsdon from Lancing, who died at the hospice on his first birthday.
  • The campaign successfully raised £500,000, which was enough to open a fifth bed at the hospice.
  • Other fundraising events have ranged from skydives and marathons, to Christmas card sales, coffee mornings and book sales.
  • More unusual events have included Marc Thorley from Brighton using an environmentally-friendly van to visit all 54 piers in England in ten days.
  • If you would like to help by fundraising, volunteering or making a donation, contact the Chestnut Tree House Fundraising Team on 01903 871820 or visit www.chestnut-treehouse.org.uk.