Debbie Clark, 54, is Swindon and Wiltshire Community and Corporate Fundraising Officer for Jessie May Children’s Hospice at Home.

The charity, which provides home hospice care for terminally ill children and their families, was recently gifted new offices in the revamped Tricentre 3 building in the town centre by Fig Offices, which made Jessie May their charity of the year. Debbie lives in Stratton and is married with two grown-up children.

JESSIE May Children’s Hospice at Home owes its existence to two people who know only too well the challenges faced by terminally ill children and their parents.

“Essentially,” said Debbie Clark, “it was established in 1994 by a mum and dad, Chris and Philippa Purrington.

“They had a baby girl called Jessie May who had a genetic condition, Spinal Muscular Atrophy. She died at the age of four and a half months in her father’s arms at home, the way he wanted it to happen.

“The charity came about because they were visiting grandparents in Bristol – they were from Hertfordshire.

“Jessie May became quite ill during their time in Bristol. She was admitted to Southmead Hospital for treatment. They treated her for a little while and she was able to go home.

“The mum and dad realised there were no services available to allow people to have that care in their home.

“A hospice is a great place, but people generally have to travel to them.”

The organisation was established a fully-fledged charity in 1996.

“Since then,” said Debbie, “it has supported over three hundred children across Bristol, South Gloucestershire, North Somerset, Bath and Swindon and Wiltshire.

“In the South West we are the only organisation that offers this service at home. Travelling to a hospice can be quite traumatic, especially if there are siblings at home.

“One of the benefits of home care is that children’s siblings can have almost a normal life around the sick child, whereas if they have to travel or have to be left with grandparents that can be traumatic for them.”

The charity has two teams of 15 nurses in Bristol and four nurses currently working in Swindon, where it has had a presence for about 18 months. There are also 15 staff in non-medical roles.

Many of the families helped are referred by hospitals and hospices such as Julia’s House in Devizes, although families are always welcome to refer themselves.

“We ask, ‘Has your child got a life-limiting condition?’ If the answer is yes then that’s the only criterion we have.”

Debbie is originally from Plymouth, where her mother worked as a shop manager and her father as an electrician. She spent most of her career in marketing for organisations including Intel and DHL, and work brought her to Swindon in 1986.

The move to Jessie May Children’s Hospice at Home came in August of last year.

“It was partly driven by the fact that I was a salesperson. I was used to selling a product, negotiating a price, offering services.”

Debbie decided she would like to use her skills at revenue generation in a way that helped others.

“I thought, ‘If I have the ability to go and sell I must have the ability to fundraise.

“Let’s raise some money for people who can really use it – not for profit, not for gain, but to change somebody’s life.”

The assistance offered by the charity varies from family to family. It can include not just medical assistance but everything from pointing people in the direction of services and advice to helping with the logistics of organising family trips when one of the participants is very ill.

The appeal for Debbie of working for this charity in particular?

“I think it’s the fact that Jessie May provides not only medical support but also emotional support for the family.

“A lot of families have lost trust, not in the medical profession but in the system. Getting them to trust somebody to come in and look after their child is a big, big thing.

“One of our registered nurses goes to meet the family for an informal discussion, to ask what it is that they need.

“Sometimes it can be advice – they’re lost in the system. It could be help with adapting their home or getting a vehicle they can fit their child’s wheelchair into.

“They are querying, they are questioning, they are entrusting their most precious gift. Many people have been through a process which has been fraught for them.

“They want somebody who gets the situation – that’s what they have said to us quite often, ‘You get our family, you get what we need.’”

Initially, nurses will generally spend a few hours with the family twice a week, although the frequency of visits often increases – always at the request of families – as a child’s life draws toward its end.

“The family dictates what they want – never do we tell them, ‘You’ll do this, you’ll do this, you’ll do that.’ Everything is completely at the family’s wish.”

The new premises, which Mayor of Swindon Maureen Penny helped to secure after making the charity one of her three chosen ones, will make life easier for staff and clients alike.

Jessie May receives support from a variety of sources, including corporate fundraising drives, sponsored events and simple donations, and Debbie welcomes inquiries from organisations and individuals who think they may be able to help.

If, say, 30 companies managed to raise £1,000 each over a year, another nurse could be added to the roster.

Anybody who helps can rest assured that they are making a real difference.

Debbie recalls one family who, thanks to the charity’s support, were able to go on simple outings together.

“Just seeing the family having a great time was a game-changer.

“I just want to get as many people as possible to listen to our story and understand what we do.

“Once people understand what we do, they’re so supportive.”

The charity’s website is, and Debbie can be contacted at and on the charity’s Swindon number, 01793 967410.