‘Hospice Care is more than you think’ – October 2025 – Noah’s Ark Children’s Hospice marks Hospice UK’s 2025 Hospice Care Week (6-12 October 2025) by sharing stories that perfectly illustrate this year’s theme – ‘Hospice Care is more than you think.’
Hospices like Noah’s Ark Children’s Hospice are dedicated to enhancing the quality of life for children with life-limiting or life-threatening conditions. Their care extends beyond the child to support the entire family, offering a truly holistic approach that addresses not just clinical needs, but also the psychological, social, and spiritual well-being of those they support. Whilst they can’t change a diagnosis, they can help children and families make the most of the time they have together. Their care is shaped around what matters most to each child and family, seeing them as individuals, not just as patients or carers.
Despite the huge impact that hospices have, including bridging significant gaps in social care, there is little public awareness and understanding of the support that hospices provide. This is why, this Hospice Care Week, Noah’s Ark Children’s Hospice is joining forces with Hospice UK to tell the stories of what really goes on behind the doors of a hospice. And it’s more than you think!
The Right to an Education
One remarkable way that Noah’s Ark Children’s Hospice supports children and young people is advocating for their right to an education. Children’s right to an education is a fundamental human right, enshrined in the UN Convention on the Rights of the Child (UNCRC). It mandates that every child have access to free, quality primary education and that secondary and higher education be available to all but so often children and young people with life-limiting or life-threatening conditions get left behind.
One young person that could have been left behind is Nasif Hussain, 20, from Camden. But, for Nasif and his Family Link Worker, Jo, that just wasn’t an option. Jo started supporting in 2022 just before his GCSEs and has fiercely advocated for him to receive the education he is entitled to. Nasif has Mitochondrial Neurogastrointestinal Encephalomyopathy (MNGIE). This presents in Nasif as extreme pain, fatigue and gastrointestinal problems, which resulted in him having a liver transplant. Through astonishing self-discipline and hard work, Nasif, 20, went on to pass 13 GCSEs and more recently three A Levels and has been accepted at University College London to continue his studies.
Nasif says of Jo’s support: ‘She’s been a really big help, school thought I should just give up on my GCSEs but Jo talked them round.’
Jo Isaacs, Noah’s Ark’s Family Link Team Manager said: ‘A life-threatening or life-limiting condition is devastating on its own. To also feel that your education has been forgotten must be unimaginable. Our job, as a hospice, is to make sure that these children and young people are seen, heard, and most importantly – not forgotten.’
Music Therapy on the Neonatal Intensive Care Unit (NICU)
Another surprising service that Noah’s Ark Children’s Hospice offers is Music Therapy on the Neonatal Intensive Care Units (NICU) of three major London hospitals; University College London Hospital (UCLH), Great Ormond Street Hospital (GOSH) and Barnet Hospital.
Kirsty Jane is a Doctoral Clinical Academic Fellow and Specialist Neonatal Music Therapist at UCLH Charity, the official charity of UCLH, in collaboration with Noah’s Ark Children’s Hospice.
Kirsty founded Noah’s Ark Children’s Hospice’s Therapies provision almost ten years ago as the Therapies Team Manager/Neonatal Lead. She met Mariam Titus and Devang Ram Mohan in 2022 when their baby son, Reiaan, when he was on the NICU. Reiaan was born at 25 weeks and two days and faced a lot of challenges because of how early he was born, issues with his breathing and his stomach for which he needed intestinal surgery. Reiaan then had a bleed on his brain which caused seizures and then developed a chest infection which he wasn’t able to fight. Reiaan was born on the 15th of April 2022 and died on 29th July 2022. The family, who live in Highbury, all received music therapy from Kirsty whilst on the NICU at UCLH and GOSH.
Devang says of the support that Kirsty offered: ‘We had a very limited time with Reiaan, so the way we were able to connect with him and the speed we were able to make that connection, that was music therapy. We would have found another way, but it might have taken more time and that was something we didn’t have.’
Kirsty says: ‘Music is something that we can all relate to. It can calm us down or give us energy but it’s something that we can all find some sort of connection with and importantly it can provide us with words when we don’t have them. On the NICU Music Therapy creates a bubble for families to separate them from the chaos of what’s happening to them and gives them a way of communicating that’s unique to them.’
Events for the Whole Family
Noah’s Ark also creates spectacular events for the families they support. In Summer 2025, Noah’s Ark put on their first Prom, an event specially created by the Family Activities Team so that children and young people could experience this important milestone in a safe, accessible way.
Nadine and Glenbert Tetteh-Allen from Enfield attended with their son Montell, 12, and his three sisters, Myala,10, Mellyta-May, 6, and Melisha, 4. Noah’s Ark Children’s Hospice have supported the family since Montell was three months old. Montell was born with Hydrocephalus, which meant that he had excess fluid in his brain which left him with complex needs and requiring specialist care.
Glenbert said of the Prom event: ‘Montell was in his element with all of his friends and his sisters around him. It’s one of the memories that I’ll cherish for the rest of my life.’
Noah’s Ark creates a space where all children can play, regardless of any perceived limitation, so that siblings can bond and create precious memories together.
Nadine says: ‘Noah’s Ark is a place where you can do things with your children who are mobile and do things with your children who are non-mobile. There are not a lot of things out there that you can do together. Montell a lot of the time has to sit and watch because he can’t join in with his sisters, but at Noah’s Ark they can do everything together. And his sisters love that.’
Sophie Andrews OBE, CEO of Noah’s Ark Children’s Hospice said: ‘Every day, every hospice up and down the country does amazing things for the people they support. We, at Noah’s Ark Children’s Hospice, are no different. We do all we can to help those we support to have a good quality of life, focusing on what they can do, rather than what they can’t. We help to create memories and moments of joy for the children and families we support.’
—————————
About Hospice Care Week: Hospice Care Week is a chance for all of us to champion hospice care nationwide. We’re applauding the incredible work that is being done to make sure everyone can benefit from the very best end of life care. Hospice Care Week takes place from 6 – 12 October 2025. This year’s theme is: hospice care is more than you think.
https://www.hospiceuk.org/our-campaigns/hospice-care-week
About Noah’s Ark Children’s Hospice: Noah’s Ark Children’s Hospice helps babies, children and young people with life-limiting or life-threatening conditions, and their families, make the most of every day. The charity supports those who die young to do so in as much comfort as possible and by providing exceptional care, organising fun activities and days out, helps families do things they never thought possible. Noah’s Ark Children’s Hospice helps those they support to enjoy life as children, rather than patients, as families, rather than carers.
Noah’s Ark Children’s Hospice is based in Barnet and welcomes the referrals of babies, children and young people who meet their acceptance criteria and who live in the London Boroughs of Barnet, Camden, Enfield, Haringey and Islington, and Hertsmere in Hertfordshire. Noah’s Ark Children’s Hospice’s costs are currently over £7m per annum to provide essential services to babies, children and young people who are seriously unwell and their families.
Leave a Reply