Sunderland mum hails 'godsend' hospice service that helps her look after daughter with complex needs

A Sunderland mum has paid tribute to the a team at St Oswald's Hospice which has been a "godsend" helping support her daughter.

Stacey Smith said that monthly respite breaks and outreach support from the hospice's children and young adults service had been the best thing to happen to her family. Daughter Ellie-Mai Grant, 15, has a range of complex medical needs as she has a rare brain condition called Lissencephaly, which has affected her since birth.

Stacey, from Thorney Close, shared her story to mark Children's Hospice Week - which runs from June 17. She explained that when Ellie-Mai was born in 2009, she soon noticed something wasn't right and wasn't meeting the usual developmental milestones.

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She was soon after diagnosed with the rare condition - and she also has epilepsy and scoliosis, and requires round-the-clock care. Ellie-Mai is non-verbal, uses a wheelchair and is peg-fed.

Mum Stacey, who has son Lewiee, 7, too, added: “It can be hard to leave the house without my sister coming with me to help, as Ellie-Mai needs constant supervision. Lewiee also misses out on activities if they aren’t accessible for a wheelchair or if his sister is poorly."

Previously the family had used respite care in Sunderland, but when that service closed they were recommended St Oswald's. Stacey added she "absolutely loved" the service, and it had been a "godsend" to be able to take advantage of the short stays on offer.

She said: “I was impressed with the vibe. Everyone was friendly and all the children were happy and smiling. They were in the garden and doing activities that I knew Ellie-Mai would enjoy. Having nurses and doctors available on site also gave me the confidence that the hospice could meet Ellie-Mai’s medical needs."

Ellie-Mai loves Disney songs and getting her nails painted. She spends three nights a month at St Oswald's and Stacey said she loves it. "When I tell her she’s going to see her friends at St Oswald’s Hospice, she starts smiling and waving her hands," she said.

Stacey added that the outreach team, which is led by nurses and travels to the family's home once a week, had been a huge help. She said: "[The service] has been such a support for me. The team came on Lewiee’s birthday so I could take him out for the evening. And last Christmas, they took Ellie-Mai shopping to pick out a gift for me. It was lovely and meant so much."

Stacey added that the support had been lifechanging, saying: “We wouldn’t have the same quality of life [without it],” she said. "Being part of St Oswald’s Hospice is the best thing to have happened to my family."

Holly Smith, Matron at the hospice's children and young adults service, added: "It is such a pleasure to care for Ellie-Mai. She is a wonderful girl who loves getting pampered, time in our sensory room and trips out and about.

“It’s also great that we’ve been able to support the family through our Outreach Service. The new service means that we can extend the reach of our excellent care to homes in Sunderland and across the North East."

The children and young adults service will mark its 21st birthday in July, and director of care services Angela Egdell added: "Children’s Hospice Week is a time when we can celebrate the impact we make not only on the children and young adults we care for but for their parents, carers and siblings too.

"We’re so pleased that we can support Ellie-Mai through monthly stays at the hospice and our Outreach Service, and provide quality time for her, her mum and her little brother. The Outreach Service is just one example of the ways St Oswald’s Hospice is adapting its service to better serve the needs of the local community."

To find out more about St Oswald’s Hospice services or how you can support the charity visit: www.stoswaldsuk.org