All year round children’s hospice at home care

No matter what the time of year, the Children’s Hospice at Home service – run by Rennie Grove Hospice Care and funded by the Pepper Foundation – provides the same service. Healthcare assistants, nurses, and play specialists visit patients in their own homes all year round, providing hands-on care, respite and advice for parents and specialist support for other healthcare practitioners.

The service provides care for families with babies, children, and young people (up to the age of 19) who are living with a life-limiting condition, and offers flexible care tailored to each family’s needs. The aim of the service is to help the children and their families enjoy the best quality of life possible in the setting of their own home, rather than in a hospice or hospital.

Peace of mind

With 90% of hospice care being delivered at home (or through day services), hospice care helps to alleviate the pressure on NHS hospital services. The children’s hospice at home service gives families the choice to have their child cared for at home, offers peace of mind, and reduces the need for hospital visits at a time when hospitals are under enormous strain.

The team carries out home visits to monitor the children’s conditions and liaise with other healthcare professionals. They help plan ahead for future needs and support parents to cope with their child’s medical care at home.

But the children’s hospice at home service is not all about nursing assistance. Play specialists offer ways to play and have fun, and group activities and events all focus on making precious moments. The team also offers short respite breaks with healthcare assistants taking over the role of carer to allow parents some time to themselves or to spend with other children or family members.

The nursing service gives families the opportunity to experience normal family life. From respite care to accompanying families on day trips, the nurses can facilitate family time to be all about fun, all about being together, all about smiling… and nothing to do with hospitals.

A children’s hospice at home service team member has a varied role in supporting families and children. Many of the children they support are living with degenerative diseases; their role not only involves providing care appropriate to a child’s current condition, but also to plan with other care providers for potential future healthcare needs, should the child’s condition be expected to change (for better or worse).

Working together to be prepared

The specialist nursing team is constantly monitoring and assessing children, using their experience to gauge the child’s condition and predict the next steps in care; that could mean medication, change of care needs or a change in lifestyle.

The nurses will talk to parents, encouraging them to think about what they want should their child’s condition deteriorate. The team will liaise with the child’s consultant to ensure the appropriate pain relief is available, with Occupational Therapists to make sure the home is safe and navigable for the patient, and other care providers to create a symptom management plan.

Supporting parents

Supporting parents is an important part of the role of the children’s hospice at home team. Many families struggle before they realise that they are entitled to support free-of-charge, such as a social worker or health funding.

Some referrals are children whose diagnosis means they will miss developmental milestones. We are fortunate to have the time to work with the parent, refer them to specialist care providers, and reassure them that in all probability their child will make those milestones at some point. The team also accompanies parents to school, reminding staff about their obligation to provide appropriate support for pupils who come under our care.

Living life to the full for as long as possible

As well as providing vital respite for parents, visits are often about balancing risk with quality of life. The nursing team can help patients to participate in activities in a safe and controlled way that reduces the risk for patients and families.

Help the Pepper Foundation continue to fund the children’s hospice at home service:

Help the Pepper Foundation