This Christmas the team at the Children’s Hospice at Home service that we fund will be providing support and care for many children and their families across Bucks and Herts. The team will be helping families to enjoy their time together during the festive season by offering clinical nursing care, respite and specialised play.

Specialist nursing care

No family should have to spend Christmas in hospital; nurses like Sarah are on call for all of the children under the care of the team, making regular planned to patients’ homes and responsive visits when necessary.

Sarah has been a children’s nurse since 2000. She cares for children with life-limiting conditions, supporting them and their families.

“Often, children are on our caseload for many years. Their needs evolve, but their families still need the specialist, personalised care, support and respite the nursing  team provides.

“Much of our work is around managing symptoms to avoid emergency hospital admissions. Regular reviews and a good rapport with parents means we can act quickly to support children’s changing needs. We can often pre-empt problems and we’re available to treat any new symptoms as soon as they occur. This can make the difference between a child having to be blue-lighted to hospital – or being able to stay as comfortable as possible at home.

“We liaise with all healthcare professionals involved in a child’s care, whether that’s at another hospice, in hospital or any other healthcare setting. We’ll also help with other things that could impact on a child’s wellbeing, accompanying families to some appointments if necessary. For example, visiting a new property with parents to check its suitability for their child’s specialist equipment, or attending a discharge meeting at hospital.

This essential care helps to keep children out of hospital and family life intact.

Respite care

As well as the nursing team, the children’s hospice at home service also provides crucial respite care. There is a small team of Healthcare Assistants (HCAs) who provide respite support, freeing up nursing time for families whose children have complex nursing and respite needs. This gives parents the space to do the everyday things that that other families take for granted, or give the parents time to be themselves.

Katie is a Healthcare Assistant (HCA). She and her colleague work alongside the Children’s Nurses to provide important respite care to families whose children have complex care needs.

“How often and for how long we visit depends on individual circumstances and the needs of the family,” she explains. “The respite support we offer continues for as long as they need our support, which for many families is ongoing.”

Offering respite support can make a huge difference to families. “Our aim is to provide respite for parents of children with multiple needs,” explains Katie. “We do this by visiting for a few hours at a time and taking over some of the child’s healthcare needs such as doing personal care, dealing with their enteral feeding needs and making the visit a fun and enjoyable time for the child.”

“This respite gives parents space to breathe, to catch up on other tasks or to spend quality time with their other children,” says Katie. “Depending on the child’s needs, parents might take the opportunity to leave the house to go shopping or to meet a friend for coffee.” HCAs aren’t always qualified to cater for all of a child’s complex clinical needs; so sometimes Katie will visit alongside a Children’s Nurse.

Specialised play support

Specialist play support has become a beloved part of the service over recent years. The specialist play team organise play sessions at family homes and at the Grove House facility in St Albans.

The play specialists have an extensive collection of toys, games and sensory resources, many of which can be specially adapted to changing abilities. These bring sensory stories, music and light into families’ homes. Above all, this enhances children’s quality of life, supporting their development, reducing anxiety and boosting the whole family’s wellbeing.

Kelly is a Play Worker and together with the Play Specialist, Karen, they are the ‘play team’ – helping children and their families affected by life-limiting illness have fun and make memories when every moment matters.

Kelly explains: “There are several strands to what we do, but the main focus is play sessions for children on the charity’s Children’s Hospice at home team. I’ll either visit families at home or welcome them into Grove House for a play session.” The team might also run group play sessions for children at Grove House, if children would benefit from the additional peer interaction group sessions can offer.

The team has a big playroom at Grove House with a large cupboard full of toys, including arts, crafts and messy play, adapted and sensory toys, gaming consoles as well as more traditional board and card games. Kelly will select toys according to a child’s needs and preference, which she’ll have noted during an initial visit, usually alongside a children’s nurse.

“I try to visit two children every day. If children are younger than school age, or too unwell to attend school, I’ll aim to visit them at home every week. For children in full-time education, I’ll arrange visits during school holidays. And if siblings are at home during a visit, I’ll involve them in play too,” says Kelly.

Play sessions vary according to each child’s needs and what they like. “Arts, crafts and messy play is popular,” says Kelly, “as are our sensory stories, told using lights, sounds and textures.

If a mum or dad is bringing their child into Grove House for a play session, we’ll sometimes arrange for the parent to have a complementary therapy session at the same time with our complementary Therapist.”

What this means to families

The Pepper Foundation spent some time with three families caring for children with life-limiting conditions and asked them about their experiences, and what the children’s hospice at home service means to them.

Watch the video: