The Children’s Hospice at Home service, (run by Rennie Grove Hospice Care) that the Pepper Foundation funds, provides essential services for families caring for children with life-limiting or life-threatening conditions.
The nursing team provides care and support for each child in their own home, as well as being available to families on the phone night and day. As well as nursing care for the children, the team will accompany families on hospital visits, offers practical advice to parents, and emotional support for siblings and other family members.
The aim of the service is to give families the ability to look after their children in the comfort of their own home and reduce the need for hospital visits by providing help and advice on how to deal with problems and concerns. The team also has two play specialists who help to make family time fun for everyone. The Pepper Foundation also works with Rennie Grove to arrange family trips, helping children and their families to enjoy fun days out together.
Just a call away
Sienna was diagnosed with neuroblastoma (a rare type of cancer that mostly affects babies and young children) at an early age. The children’s hospice at home service offered Sienna’s family peace of mind and practical support.
“It was great knowing I could call at any time just to talk or to ask advice.” Sometimes, says Mel, that was as simple as needing contact details for a physio. At others she might have more in-depth frustrations, questions or concerns about treatment that she could share and discuss with the nurses.
“Of course it’s tiring looking after four kids,” she admits, ”but the worry that comes with caring for a child with serious health needs – the sense of responsibility when you’re overseeing their care in any setting – is draining”. For Mel, Sienna’s mum, having specialist nurses at the end of a phone to share that responsibility has been a huge relief.
Respite care and liaising with healthcare professionals
Shailza and Daniel have two beautiful boys just a year apart. Sadly neither Riley nor Stanley is able to sit, walk, talk or even feed properly. Both boys have been diagnosed with a very rare genetic condition involving a duplication of an X chromosome which has left them with very poor muscle tone and in need of constant care.
For Shailza and Daniel, life became a constant round of hospital appointments and around-the-clock care. They were referred to the Children’s Hospice at Home service and began a weekly three-hour visit when one of the charity’s nurses was able to take over all of Riley’s care needs to give Shailza and Daniel a break. The team also helped the family to liaise with other healthcare professionals involved with Riley.
“It is immensely reassuring that the team is only a phone call away. The whole team is fantastic. We have called them at night for help and advice. Daniel works nights and there have been two occasions when I have become really unwell and have been unable to care for the boys. A nurse has come out without hesitation on both occasions to look after the boys until Daniel was able to get home and on one occasion continued to care for Riley and Stanley while Daniel took me to hospital.”
Family events
Max is six years old and is living with an undiagnosed genetic disorder that has left him non-verbal and unable to do anything for himself, as well as having complex epilepsy with different kinds of seizures every day.
Max’s parents, Karen and John, started receiving support from the children’s hospice at home service over two years ago; although they have been shielding through the pandemic, the knowledge that support is still available has been immensely reassuring
“We heard about Rennie Grove when Max started at a special school and Martha was just over one year old. They started helping us and it was just great having somebody who can sit with Max after school while I picked up Martha from nursery.
The nursing team understood Max’s needs and what to do if he had a seizure. The nurses meant that Karen didn’t have to move him around or get him in and out of the car to pick her daughter up from nursery.
“We also really enjoy events arranged by Rennie Grove and the Pepper Foundation where we get to meet other families and go to places where the facilities have already been checked out so that’s been brilliant. We’ve also been in touch with other families we’ve met who want to support each other, especially during lockdown to check how everyone’s doing. It’s nice not having to explain to people as they understand what life is like for families like us.”
Read more about the families here: https://www.pepper.org.uk/the-nursing-team/case-studies/
