The emotional support service, which started in 2009, is offered to young people aged 13 years and over who access hospice services and have life-limiting conditions.
Bereavement services have been offered to families for many years, but Francis House recognised there was little emotional support available for teenagers and young adults who, due to medical advances, are living longer.
“Emotional support offers a young person the opportunity to talk about anything concerning and worrying them. They experience a range of emotions: frustration, guilt, anger and sometimes they want to share joyful news,” said Jackie Giles, senior member of the care team at the hospice.
“It gives them that chance to get things off their chest and share their thoughts with another person.
“They discuss with me how having a disability has affected them throughout their childhood, school lives and into adulthood.
“A lot of the young people I speak with grieve for their future, the future they’ll never have. That ranges from ‘I’ll never be a mum or a dad’, ‘I’ll never drive a car’, ‘I’ll never work’, ‘I’ll never have a title other than my name and my diagnosis’, so there is great sadness.
“There is a lot of fear around having a life-limiting condition, a fear of what will happen and how they will eventually die.
“Some young people are quite open and want to plan their funeral and are very involved with that, but that always comes from the young people as they broach different subjects and topics when they feel necessary.”
The hospice has recently opened a seven bedroom extension, known as Francis Lodge, where young people can stay for short breaks enjoying large wheelchair friendly spaces including specially adapted bathrooms and bedrooms equipped with Playstation 4s.
“The world isn’t open to disability as much as we’d like it to be. They feel excluded on many occasions, something as simple as access to a restaurant or bar when they go out socialising.”
The sessions take place in Francis Lodge, or Jackie does home visits or meets in a place away from home like a coffee shop.
In the last four years of running the service, young people have been referring others from their peer group.
Jackie said: “It’s become the norm to talk about feelings. It’s far easier now to offer and give that service.”
At the Lodge, a room known as the Pod is equipped with audio visual equipment, enabling video messages to be recorded.
“Some of our young people want to leave behind a DVD for their parents to remember them by. They want to thank them and say things in that DVD that they can’t say to their parents while they are alive.”
Jackie has worked at Francis House for 11 years, her role has included being part of the bereavement team. In 2010 she became one of six seniors in a care team of over 60.
Jackie explains that the young people she works with have said they they don’t want traditional, formal counselling: “They want it to be quite informal and need to know the person that they are talking to. It helps if that is someone familiar to them and works on the care team, not just somebody coming in for that session.
“What they are sharing is very honest and very open. It’s becoming the culture here.
“I have great admiration for them because they are living day in day out with not just a physical disability and a life-limiting condition, but as they come to terms with that, they will support other young people if they see somebody else is in a different place than they are.”