Charity hospice service launches emergency appeal

Jessie May, the children’s hospice at home charity, is launching its urgent “Your Community Needs You” appeal to protect hospice care for children at home.

For nearly 30 years the organisation has been supporting families of children with life-limiting and life-threatening conditions, through specialist nursing care and emotional support at home across Bristol and the surrounding areas. They also offer palliative care.

The support they offer often continues for weeks, months and even years. Currently they care for 52 ill children in Bristol, with a further 196 across the South West region.

But continuing hospice sector cuts, lack of government subsidy and legislative changes, like the employer national insurance contribution, have placed this unique service at risk.

The cost of care has also risen sharply from last year when it cost £1.7m to run the service, this year it’s projected to be nearly £2m.

Despite this referrals continue to soar with an increase of 53 per cent this year alone – placing more pressure on charities.

In response they are launching their “Your Community Needs You” campaign, as a call to action so they can address an estimated funding gap of £300,000 and continue their vital work.

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.

The campaign ends July 14.

The charity support the whole family – photo: Jessie May

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.

Archie was born prematurely at just 23 weeks, he spent nearly a year in hospital, fighting for his life.

Now seven, he lives with multiple complex needs, including cerebral palsy, chronic lung disease, and profound disability, meaning he is 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, allowing for Archie and his family to receive care at home, where they feel safe, comfortable and at their happiest.

Laura McArthur, Archie’s Mum says: “They’ve been with us on the whole journey.”

She explains that their initial introduction started at the hospital and they’ve been with the family ever since.

The support has enabled the family to do things they “never thought possible,” like hydrotherapy sessions.

When a child has a complex needs it makes simple, mundane activities like grocery shopping difficult to almost impossible without stress. So, the services on offer from the charity allow for much needed respite.

“You forget how much you need to look after yourself,” Laura explains. The consequence of not being able to do that means “you don’t have 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 and 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.”

The life quality of Archie and his families has been massively improved with the support of Jessie May – photo: Jessie May

82 per cent of Jessie May’s funding comes from the local community – individuals, businesses, schools and community groups.

Only 18 per cent is received from government sources, and that funding is at risk.

“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 at we-need-you.jessiemay.org.uk/ 
• Be a digital champion as part of their matched campaign; get involved and share their story with your family, friends and colleagues. All funds raised will be matched funded. Email them 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
• Write to your MP and share Jessie May’s story on social media

Throughout the next month Bristol24/7 will be supporting our charity partner Jessie May, to raise awareness of their month-long emergency appeal.

Main photo: Jessie May

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