Over the past decade, advances in medical procedures and interventions, including artificial ventilation, have meant that some children who previously would have died at a much earlier age are living for longer.
This means that staff at Francis House have witnessed many of their patients grow up from small children into teenagers and young adults.
“When the children come to Francis House they stay with us, they’re not handed over to adult services at the age of 16 or 18. Once they’re here they can continue to come as long as they need us,” explains Alison Christopher, a senior member of the care team at the hospice.
“We get to know them as adults, we find out their hopes, fears and dreams, and encourage them to talk about that if they want to. Above all we can spend time with them and that is so important to the families,” said Alison.
Ann Tarpey and her son Dominic Bennett have relied on the hospice since Dominic was three years old.
Born with Down’s syndrome and a major heart problem, Ann was told her baby was unlikely to survive for more than a month. The first few traumatic years were spent constantly in and out of hospital.
Dominic, now 21, continues to enjoy stays of a few days at a time, four times a year in the new teenage and young adult wing at Francis House known as Francis Lodge.
Ann said: “Dominic loves life and loves coming to Francis House, it’s a real highlight for him. He looks forward to seeing the staff he has known for years and the new building gives him the freedom to be himself.
“Over the years we’ve had loads of fun here, we’ve even been on the set of Coronation Street. Francis House has given us lots of really good memories.”
Respite care for young adults
A great deal of the support offered by Francis House is in the form of respite care, giving families a break and enabling them to recharge their batteries.
There are currently over 250 children and young adults accessing this respite care. Of these, 86 are aged 16 or over and 8 are over 25 years of age.
In May 2014 Francis House opened Francis Lodge, a seven-bedroom extension specifically for teenagers and young adults. Stays in the state-of-the-art building are “parent free”.
The building is equipped with music systems, Playstations, anything that would normally be found at home. Piped oxygen in all the bedrooms and in the lounge is carefully hidden away to create a relaxing home-from-home environment.
Young people staying at the Lodge can also enjoy activities such as going to the cinema, shopping or trips out in the evening, always escorted and supported by members of the care team.
“It’s been very important to us having somewhere we can continue to come as Dominic is getting older. The facts of life haven’t changed, we’re still living with his illness and if there had been a cut-off at 16 or 18 years of age and we had to stop coming it would have been devastating for us both,” said Ann.
“I can’t imagine how I will ever be able to say goodbye and let go, but knowing there will be somewhere I feel safe, comfortable, looked after and where I know Dominic has been loved and cared for over the years – I can only imagine that will be a support at the time.”