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Care at home: Why community outreach is important to local terminally ill children

28/08/2018

Care at home: Why community outreach is important to local terminally ill children

28/08/2018

Not all children supported by Helen & Douglas House are cared for at the hospice. Karen and her team supports 116 local terminally ill children a year outside the hospice, at home, school or in hospital, taking the expertise of Helen & Douglas House out into the community.

Karen Brombley’s job comprises of a mixture of visits to children’s homes, schools or hospitals and in addition parents can call Helen & Douglas House 24 hours a day, 365 days a year for advice and reassurance. Many parents of terminally ill children have given us feedback about how much they appreciate the security of knowing that Helen & Douglas House is always there for them in case of an emergency. Our community outreach nurses provide families with this additional peace of mind.

Earlier this year Karen received The Queen Elizabeth the Queen Mother’s Award for Outstanding Service by The Queen’s Nursing Institute. Karen was one of five nurses from across the UK to be given this prestigious award. As well as being a Nurse Consultant in Children & Young People’s Palliative Care at Helen & Douglas House, Karen also teaches at Oxford Brookes and the John Radcliffe and advised on NICE guidelines.

The fundamental aim of community outreach nursing is to give flexible and personal support to children with life-shortening conditions. Karen has been able to improve the quality of life for children in the saddest of circumstances, to support their families and to help other healthcare providers as they work towards the same aims.

The difference Karen makes to local families

The community outreach service provides children and their families with a vital degree of flexibility and choice. Outreach nursing allows patients and families to choose where they receive our expert support – this might be at the family home, or even at school. In many cases, our young patients feel more relaxed in their own surroundings with their families, friends and their favourite toys.

Karen’s expert care helps with symptom management for those children who come for respite and she also provides support at home towards the end of a child’s life.

Symptom management at home for children who come for respite care

Children with life-shortening conditions often need support beyond that which is available in hospitals or in our hospice. Some of our patients have unstable conditions, meaning their symptoms might change from day-to-day. We visit families in response to sudden changes in symptoms and we are able to react quickly to a patient’s needs, providing adjustments to their care without the need for a hospital visit.

‘At home, if I can’t get through to the hospital teams, I will call Helen House for advice. This is so reassuring, as I sometimes worry how serious a new development is in Josh’s condition and it gives me confidence.

The Outreach Nurse Specialist has also been such an amazing support for me and I regularly touch base with her. She is a fountain of knowledge and often my first port of call for advice, as she knows us so well. She never makes me feel like my questions are silly and is so keen to help.

Helen House has also come to our rescue when Josh was discharged from the hospital. They really helped us get to grips with a new feeding and medicines regime, which would have otherwise meant a prolonged hospital stay.’ – Clare, Josh’s Mum

End-of-life care at home

As a child approaches the end of his or her life, the family is often torn between needing to provide ever-increasing care and wanting to value the time they have together. While many families decide to come to Helen House so that their children can be cared for in our hospice, some families prefer to stay at home for the end of a child’s life. We support them in this choice and in these circumstances we spend more time with a family and liaise with their other health care providers more closely than normal.

Care for the rest of the family

Alongside the care provided to patients, we have also supported the children’s families. This has been particularly important for those family members in caring roles, as this can be exhausting and invariably takes the carer away from other activities such as spending time with the sick child’s siblings.

Families can request a visit from a community outreach nurse on a regular or ad hoc basis, depending on their child’s symptoms. During such visits, the nurses care for the sick child whilst the rest of the family take a break or enjoy simply acting as a parent, for example, by reading their child a story while the nurse administers medicines.

You can help provide hospice care to local terminally ill patients 

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