'I watched my grandson die at 17, now vital service keeping his sister alive is under threat'

Sophie Charles celebrated her 20th birthday last week with a barbecue with family and friends in the garden of her grandmother’s home in north London. But for her family it was more than just a birthday party. Sophie has STXBP1 – a severe genetic brain condition – that makes every birthday she reaches extra special. Her late brother Ben, who had the same condition, passed away at just 17. Celebrating the same milestone this year, is the extraordinary place that has accompanied Sophie on her life’s journey every step of the of the way – Noah’s Ark Children’s Hospice, in Barnet, North London. “Noah’s Ark has been alongside us all the way, even before the building opened,” Sophie’s grandmother, Rose, says. “We had a lovely afternoon celebrating Sophie’s 20th birthday with lots of her favourite people. Carers, friends and family all came together for a very special day. The fact that we’ve got this far is testament to the support and care she’s received from all of them and of course from Noah’s Ark.” Last year, Noah’s Ark supported 459 babies, children and young people, 453 siblings and 617 parents and carers – a total of 1,529 people. But like many hospices – and especially children’s hospices – across the country, Noah’s Ark is battling a funding crisis that has left it £1 million pounds in deficit and struggling to raise running costs of £20,000 a day on its 20th birthday. Hospice care in the UK is free to users, but, unlike NHS care, it is not fully state-funded. According to Hospice UK, the amount that hospices receive from government makes up only around one third of their income, and the rest is charitably funded. Hospice UK has calculated a £310 million gap in funding. While new Prime Minister Andy Burnham has charged his new government with working on plans to reform social care, children’s hospices say they must be included, if care is to work for everyone. “We welcome the Prime Minister’s ambition to build a more preventative state and invest in success rather than paying for failure,” Sophie Andrews OBE, CEO of Noah’s Ark Children’s Hospice, says. “For children with life-threatening or life-shortening conditions, and their families, prevention means getting the right care early, avoiding crises, reducing hospital admissions and supporting families at home. Hospices and children’s palliative care services are central to delivering this vision. They must be fully recognised and embedded within a national care service, not treated as an optional extra.” Just before Christmas, Richard House – London’s first ever children’s hospice, also in North London – was forced to close its doors for good. For a young person like Sophie, who is tube-fed and uses a wheelchair, losing Noah’s Ark would be devastating. She has uncontrolled epilepsy and experiences dystonic, or involuntary, movement, meaning the support of the hospice is vital. “Sophie accesses the world on a sensory level,” Rose says. “She loves the sensory room at the Ark because she can relax and take in all the amazing lights. The hospice has enriched her life. “Life without the hospice would be difficult, we rely on them emotionally too. They provide fun. Noah’s Ark is the only place she be safely hoisted out of her chair to enjoy the things they have to offer. It is very easy for children and young people in wheelchairs to become invisible when they are just pushed around and have no voice.” Sophie was eight when she lost her brother Ben in 2014. “The condition has affected them in different ways, but the journey was the same,” Rose says. “When Ben started having problems as a baby, the ground fell from beneath our feet. To watch it a second time around with Sophie – the devastation was complete. You can’t do anything other than accept it. “We didn’t have the support of Noah’s Ark with Ben, at the end of his life. He died at home peacefully, with Sophie and I. But having had that experience has made Noah’s Ark all the more important when it comes to Sophie. We’re under no illusions, we know where we’re headed. But we’re going to have a good time getting there, and enjoy all the support that is given. We know we’ll have the best possible network when that happens.” When Sophie was first referred to the hospice, the family struggled with the news. “My first thought was we’re not ready for a hospice,” Rose says. “Most people think of death when they think of a hospice, but my perspective soon changed – it is actually about life and opportunity. A play specialist would visit and it meant I could get a couple of hours to catch-up on housework. They even offered services like laundry help. They'd take the basket away and bring everything back on hangers. There are days out where we can socialise with other families in the same boat.” The family are also able to use the Noah’s Ark holiday lodges on Mersea Island in Essex, to take a break. “That has all contributed to Noah’s Ark being the special place it is,” Rose says. “Isolation plays a huge part, and the bond the families have at the hospice is special.” Noah’s Ark CEO, Sophie Andrews OBE, says: “I think the average person on the street wouldn’t believe that we have such a low amount of funding from the Government. We do get an awful lot of goodwill from politicians but goodwill doesn’t pay the bills.” In recent months, hospices have been hit by a combination of rising energy costs, and an increase in National Insurance. “Meanwhile, the average person now has less to give because of the cost of living crisis,” Sophie says. “Which is tough when the sector is so reliant on voluntary donations. Noah’s Ark has a planned £1m deficit for the coming year. While we do have some reserves, at some point this will run out. We're certainly having to look to streamline services.” Earlier this year, The Children's Commissioner for England revealed thousands of children were stuck in hospital long after they are medically fit to be discharged. “We are integral to the NHS,” Sophie says. “Without us, ultimately, children would have much poorer quality of life, and much poorer quality of death, with children dying at home without adequate clinical support. There won’t be that wraparound ongoing support that we provide for families through the bereavement process. A children’s hospice is a whole ongoing relationship that continues post-death.” Meanwhile, grandma Rose is determined to make the most of the time her family has left with Sophie. “I’m so proud of Sophie’s spirit and determination through all the difficulties she faces,” Rose says. “We’re looking forward to planning the big 21st celebrations now.” You can support Noah’s Ark Children’s Hospice here.