Jessie May launches urgent “Your Community Needs You” appeal to protect hospice care for children at home.
Jessie May, the children’s hospice at home charity that has been supporting families across Bristol and surrounding areas for nearly 30 years, has today launched an urgent appeal to protect the future of its care for seriously ill children and their families.
The “Your Community Needs You” campaign is a call to action for everyone in Bristol, Bath, Swindon, Wiltshire, and the surrounding areas. Currently caring for 52 seriously ill children in Bristol – and 196 across the South West – Jessie May provides specialist nursing care, as well as practical and emotional support, from the point of diagnosis. Through life and death, bereavement and grief, Jessie May is there for families for as long as they need – supporting them for weeks, months, and even years.
But now, in common with many other charities in the hospice sector, the rising cost of care, lack of government subsidy and legislative changes, like the employer National Insurance contribution, have placed this unique service at risk. Jessie May is facing a funding gap of £300,000 this year to continue caring for seriously ill children at home. A shortfall that, if not met, could lead to the charity having to make difficult decisions with fewer families being supported at the time they need it most.
Behind every one of those 52 children in Bristol is a story like Archie’s – a family relying on Jessie May to keep their child safe, and cared for at home. Thanks to Jessie May, families like Archie’s can be together at home, where they feel safe and comfortable. At home, seriously ill children can still be children, and their families can make memories to look back on when they need them most.
Archie was born at just 23 weeks – one of the earliest points at which a baby can be born and still survive. He spent nearly a year in hospital, fighting for life. Now seven, he lives with multiple complex needs, including cerebral palsy, chronic lung disease, and profound disability. He’s unable to speak or walk and is dependent on a tracheostomy to breathe.
Jessie May has been there for Archie and his family since he was six months old. “They’ve been with us on the whole journey,” Laura, Archie’s Mum says. “They used to come and visit him in the hospital, and they’ve stayed with us ever since. They’ve enabled us to do things we never thought possible – like taking him to hydrotherapy, spending time as a couple again, or just going to the supermarket without feeling terrified to leave him.”
“You forget how much you need to look after yourself,” Laura explains. “And if you don’t, you don’t have the energy to look after your child.”
It’s not just about giving the parents a break. The nurses are trained to provide high-level medical care, meaning Laura can trust them completely with Archie’s complex needs. “Sometimes I come home and they’ve cleaned the kitchen, washed up all the syringes, done his tracheostomy care, fed him and put him to bed. I feel so much relief that I could cry in these moments; I can come home and actually relax.”
As a former parent trustee for Jessie May, Laura knows the importance of long-term, sustainable funding for children’s hospice services. As the cost of caring for seriously ill children rises, she is clear in her message: “Support from Jessie May makes us feel like parents again – not just carers. They allow us to be a family. Without their support, we’d struggle to function.”
She urges the government to continue and increase funding: “Jessie May is our lifeline. We’d be lost without them.”
Why your community needs you
- 82% of Jessie May’s funding comes from the local community – individuals, businesses, schools and community groups.
- Only 18% is received from government sources, and that funding is at risk.
- Care costs have risen sharply – last year it cost £1.7m to run the service, this year it’s projected to be nearly £2m.
- Referrals are rising fast – up by 53% this year alone – showing that demand for hospice care at home is higher than ever.
“Hospices play a vital role in the healthcare system, but the entire sector is facing the biggest crisis it has ever faced. It’s not limited to Jessie May,” says CEO Daniel Cheesman. “The rising cost of delivering care over recent years has had a big impact on our running costs, as have the changes in factors like employers’ National Insurance contributions. We’ve made every effort to make savings where we can, but we do not want to cut services to the families who desperately need us.”
Daniel urges, “We know times are hard and there are lots of good causes out there, but we are providing vital support to families in your community. We work with 52 families in Bristol, so the chances are there is a Jessie May family near you, and we need your help so we can continue to support them. If everyone in Bristol donated just £1, we’d meet our target.”
How to get involved
- Donate: Visit https://we-need-you.jessiemay.org.uk/ and click “Donate Now”
- Become a Champion: Be a digital champion as part of our matched campaign; get involved and share our story with your family, friends and colleagues. All funds raised will be matched funded. Email us via appeal@jessiemay.org.uk
- Fundraise: Host an event, take on a challenge, or rally your school, business or community group
- Give regularly: Set up a monthly donation to provide reliable ongoing support
- Raise your voice: Write to your MP and share Jessie May’s story on social media
“This is about keeping children at home with the people they love. About siblings spending time together. About giving exhausted parents a break. About giving families a choice – and the dignity of being supported when it matters most,” says Daniel.
Your community needs you. Please donate today. It’s more than a donation, and Jessie May is more than a hospice at home.