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Discover our SPACE team

September 1, 2023

This year, our Symptom Care team marks its 15th anniversary. The team, now known as the SPACE team (Specialist Paediatric Palliative Care Team) supports hundreds of families across Surrey and west London.

Our team of specialist nurses, led by a Lead Nurse, Level 4 Paediatric Palliative Care Consultants and Nurse Consultant, provide expert end of life and symptom management care at Christopher’s, our Guildford hospice, and within the community and hospital settings. They also provide 24/7 symptom management telephone advice in partnership with the Royal Marsden Hospital.

Families are referred to Shooting Star Children’s Hospices by Consultants from local and tertiary services.

For children who have complex needs, a symptom management stay at our hospice may be required, the child or young person is supported medically and holistically to help keep symptoms controlled ensuring they’re as comfortable as possible. During a hospice stay the child will be monitored closely and assessed by the SPACE team daily making it easier to make medication changes; any side effects and the effectiveness of medications are observed in a controlled manner within a safe and comfortable environment.

Our care in practice

A young child was recently referred to the SPACE team following a significant brain injury. The child’s symptoms included seizures and dystonia (a movement disorder that causes muscles to contract involuntarily), which can lead to pain and agitation. We supported the child and their family with…

Symptom management care and support with Advanced Care Planning

Weekly visits to the child and twice weekly calls to the ward and/or family

A SPACE Clinical Nurse Specialist liaising with one of the medics in the SPACE team for guidance and/or prescribing

Referral to appropriate teams within the hospice for additional support

Sarah Sogeler, Interim Lead Nurse in the SPACE team, shares how integral the team are in ensuring a truly bespoke level of care is given to each and every child we support.

“Every day begins with a handover from PATCH (Paediatric Patient Advice by Telephone for Care at Home, Hospice and Hospital – our out of hours telephone service) to find out if anyone has been in touch the night before. If a family has called, they’ll require a follow up call and possibly a visit.

“Three times a week we have a SPACE ‘huddle’ which gives the nurses and doctors the opportunity to discuss children or young people with changing clinical presentation. During the meeting we make plans for those that are unwell and discuss how we’re going to best manage their needs.

“We typically visit a child or young person at home or in hospital, but occasionally we may visit them at school. If the child is in hospital long-term, we aim to visit once a week or fortnightly depending on their clinical presentation. This is partly so the family get to know us, but also to support the hospital staff and family with symptom management. During a home visit we provide support to children struggling with a particular symptom (e.g., pain or dystonia). If we’ve made a change to their medication to help manage this, we’ll also check whether this has had the desired effect with minimal side effects.
“If a child or young person has deteriorated the team are always responsive and offer expert care. If they’re nearing the end of their life, this will be discussed with families alongside what is important to them and if they want – to stay at home, come to the hospice or go to the hospital. We will liaise with the appropriate teams to making sure the child and family are where they want to be.

“A big part of the SPACE role is liaising with other professionals that are involved with the child or young person’s care and the team work very collaboratively. We end the day by handing over to our out of hours service.”

Shine Winter 2023

This article is from the virtual edition of Shine – our supporter magazine. Check out the other articles in the latest edition.
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