Put some colour in your run to support local families

Saturday 09 June 2018

Islanders are invited to sign up for the Dandara Colour Run on 16 June to raise funds and help support local families with children who have life-limiting and life-threatening illnesses and conditions.

Money raised as part of the fun run, which includes getting doused in colour paint, will go to the FNHC’s new Paediatric Palliative Care Worker who supports children and families on the Jersey Children’s Palliative Care Pathway.

The role was created four months ago to help do some of the work done by the lead nurse, who had to cover clinical care and other tasks that were more fitted for a support worker. FNHC appointed Nicola Waggott as a Paediatric Palliative Care Worker. With 11 years’ experience in working with children with complex needs, a Level 3 Qualification in childcare and specialist training in various areas, Nicola was the perfect fit for the role. 

She explained: "Within the island, historically there has been limited provision for children that have a life-limiting or life-threatening condition. FNHC’s Community Children’s Nurses in partnership with other organisations recognised the need to have a Children’s Palliative Care Pathway in place, to ensure all children with palliative care needs and their families receive good quality and equitable palliative care. The Palliative Pathway can be a very long journey for some families and the funds from the colour run go directly towards the development of the Paediatric Care Worker role and the continuation of it, including any training that is required."

As part of her role, Nicola helps children with life-limiting and live-threatening conditions. Lindy Henesy, Team Leader for the Community Children's Nursing, explained that they include chronic conditions that mean a child will not have a normal life span, conditions for which, following treatment, a child can lead a normal life as well as conditions for which a cure is not guaranteed. Nicola also supports the children's families, including their siblings, to access different activities but also to organise visits to specialists in the UK.

Pictured: Nicola with the Hansford family, one of the many she is currently working with.

Lindy says the most important part of the role is to listen to the children and their experience. "It's not about what it should be, but what they want," she explained. "It's all about the quality of life and living well. The end of life is a very small part of it."

Nicola added: "I’m there to provide emotional and holistic support for the whole family. I think there is a general public consensus that ‘palliative’ means end of life and in a small number of cases it does, but in all cases there is lots of living and fun. Children have wishes and things they want to do and I help them with that.

"You become integrated into a family’s life and that’s very rewarding, to know that you’re making a difference. My aim is to give families and children on the Children’s Palliative Care Pathway the best journey that they can possibly have."

While she has been in the post for four months, Nicola says she can already see how essential this role is in the island. She believes her role is already improving experiences and outcomes for children and families. "We have had some positive feedback," she said. "I have formed a relationship with more than half of the families and have been working actively with them. Some have said how much of a difference it has made to them."

Pictured: Nicola and Nixon Hansford.

One of the children Nicola is currently helping is five year-old Nixon Hansford, who has a muscle weakness condition. Nixon’s condition means he requires a walking frame or wheelchair for when he gets tired. It also affects his ability to eat, so he has to be pump-fed milk and his medicines. Nixon’s main issue is caused by respiratory distress, which on occasions he has required ventilation and transfer to the UK for treatment. At night, Nixon requires assistance with his breathing while he sleeps. His family believe that without FNHC’s support, Nixon wouldn’t be able to live at home. 

Nixon’s illness has a huge impact on the whole family. They spend a lot of time back and forth to the UK for treatment. The family has completely changed the way they live, including moving house to somewhere more practical for Nixon’s needs and his mother, Dee Hansford, gave up her job for some time in order to care for her son at home. 

"When Nixon was born, we weren’t sure what the outcome would be for him," Mrs Hansford said. "Emotionally, it was very hard being apart as we’re such a close family. When we got Nixon home, FNHC’s Community Children’s Nursing Team helped us adjust and settle into life and supported us throughout the whole process. Having that reassurance of someone being at the end of the phone who’s trained to help with Nixon’s medical needs is such a relief and a comfort to us as a family.

"If we didn’t have FNHC, I believe Nixon wouldn’t be at home. I can’t imagine his wellbeing and our family’s quality of life being as positive and great as it is now without the support of FNHC."

Pictured: The third Dandara Colour Run is scheduled for 16 June.

There are currently 22 families on the Children’s Palliative Care Pathway, but FNHC says the number of children suffering from chronic and acute conditions, that require long term or intensive care, is increasing. To continue helping them, FNHC is urging islanders to take part in the third Dandara Colour Run. The colourful run was launched two years ago to help create Nicola's role. Last year, it raised £22,000.

Taking place on 16 June, the Dandara Colour Run is a 5k run along St. Aubin's Bay starting from West Park. The untimed event has no winners or prizes, instead, runners are showered with coloured paint, made of food-grade corn starch, at designated stations along the run. Islanders as young as five can join in and sign up online until 11 June.