Homecare – building relationships

From the first meeting to end of life planning, the homecare team works alongside families every step of the way.

Quiet gasps of excitement fill the air as a variety of soft furry animals are carefully placed onto the laps of children or held up to be stroked by their gentle hands.

The fun is all part of a unique sensory group experience for parents and their children in response to a growing need for day care activities to allow families to spend precious time together.

Supported by all four members of the Francis House homecare team (Alison, Esther, Rachel, Megan and play specialist Emily) eager families descend upon the hospice every other month, and for a couple of magical hours all cares are forgotten.

Care team member, Rachel Ellis explains: “The aim of the Saturday group session is to encourage newly referred families of younger children, to see what we can do to support them and to build up their confidence in us.

“Some of our parents can feel very isolated and don’t have many friends or family around. A mother and baby would normally go to a play group and make friends, but when you’re the mum of a child with complex needs and health conditions, you don’t feel like going to groups out there in the community.

“When they come here, no one bats an eyelid if their child has got a tracheostomy or gastrostomy and it’s time for a tube feed. They can get a lot of support from the other parents because they’re all going through similar things.”

To achieve the relaxed atmosphere and happy smiles takes hours of careful planning by the team. Every family has their own individual needs, and all come with specialist equipment and bags full of medication.

The session starts with a welcome song and nursery rhymes and has a theme with activities, messy play, and arts and crafts to stimulate all the senses.

“Families always go home with something, like they would if they went to your typical play group. Parents tell us ‘because our children don’t go to nursery, they don’t get these things.’ They don’t get a photograph or a picture that goes on the fridge,” says Rachel.

The families can turn to the homecare team for support and advice about anything to do with their child’s condition or their symptoms.

Rachel says: “Here they don’t feel judged. They can come here and be a family. When they are here we can keep to a child’s normal routine and they can go and have a sleep. Things are just normal but they can get out of their four walls.”

After the young families have departed, the team tidy up and prepare for the arrival of a dozen or more teenagers and young people for an afternoon group session in Francis Lodge.

Having not left their homes during Covid, many of the young people with life-limiting conditions slowly started to return to the hospice for day care. They enjoyed time on the PlayStation and playing games with the care team, but never left their rooms or met anyone else.

As increasing numbers of young people came for day care, a new social group was formed specifically for them.

Activities include quizzes, games and enjoying an evening meal together. With its large communal lounge and dining area there is plenty of space for wheelchairs to be seated around the kitchen table. As the young people get to know each other, friendships are made and increasing numbers are now staying for respite care.

Nurse, Esther Napier-Hemy explains: “We’ve seen huge changes in the confidence of the teenage boys. When they first came they wouldn’t even look at us. Now, there is laughter, they’re chatting and getting to know each other, they have really changed.

“Their mental health has really benefitted and some now come for respite. It’s so nice to see them all sat around the table doing a quiz together. They would never have done that a year before.”

Families of vulnerable children who are not yet confident to leave their child for respite but are wanting to use the facilities at Francis House – like the jacuzzi and sensory rooms – are invited to come for day care. It’s an opportunity for the homecare team to build up trust, talk about the hospice and the different services on offer.

The work of the homecare team is varied with no two days the same. A shift may include meeting a family in crisis who has just been referred, greeting a family on their first visit to the hospice, having difficult but helpful conversations with parents around advanced care planning, delivering end of life care in the home, interprofessional working with other critical care teams across Greater Manchester, and follow up practical support.

“Families lean on us for support and advice. They might want us to liaise with their key professionals to help them with something, for example wheelchair services, or if they are struggling with some sort of symptom that is ongoing. They tell us some of their happiest memories have been here for day care. They can get out of their four walls, and we understand what they are going through. They know everyone here and they’ve built relationships. It’s a familiar place, a safe place for them,” said Esther.