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Paediatric Palliative and Supportive Care

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Overview

The Paediatric Supportive and Palliative Care team at Royal Hospital for Children (RHC) provide tertiary specialist paediatric palliative care across the paediatric spectrum, from the antenatal period, through infancy and childhood and also for young people until they reach their 16th birthday (and those who are 17-18 years but still accessing services at RHCG). The service provides an individual patient-centred pathway from diagnosis or recognition that a condition is life-threatening or life-limiting. The service provides and supports specialist symptom management, advance care planning and decision making and end of life care planning for children and young people with life-limiting conditions within hospital, community, hospice, school and social care settings.

Clinical team

Medical Consultants

  • Dr Jonathan Downie, Consultant in Paediatric Palliative Medicine (PPM)
  • Dr Diana McIntosh, Consultant Paediatric Oncologist with Specialist Interest in (SPIN) PPM

Nursing Team

  • Caroline Porter, Diana Children’s Nurse West of Scotland
  • Michelle Ward, Clinical Nurse Specialist in Paediatric Palliative Care
  • Elizabeth-Anne Kelly, Clinical Nurse Specialist in Paediatric Palliative Care

 

Clinical services

The team offers consultant-led specialist palliative care management and advice to patients, families and professionals.  We provide inpatient support for the Royal Hospital for Children and outreach for children being care for at home, local hospital or hospice. 

 

The services offered by the team include:

  • Specialist symptom management and advice
  • Anticipatory and emergency care planning
  • Supporting familial and professional decision making; particularly in the context of complex ethical decision making or decision making around life sustaining therapy
  •  Specialist palliative care input into multidisciplinary team meetings
  •  Support for parallel planning, acknowledging that palliative care support can complement the management of the seriously ill child / young person and should not be reserved only until death is inevitable
  • End of life care decision making and planning
  • Support in intensive care environments to facilitate preferred place of care for end of life, including fast track to hospice or home for home extubation
  • Rapid discharge home for end of life care, planned on an individual patient basis and in collaboration with local teams
  • Leading on the provision of end-of-life care outside the hospital setting, in close collaboration with community teams and Children's Hospices Across Scotland (CHAS)
  • Ensuring the availability of psychosocial support for patients, families and professionals involved in a patient’s care
  • Staff support: Pre- and debriefs relating to a patient’s death, and other professional meetings, at Royal Hospital for Children, other local hospitals, hospices and in the community
  • Bereavement support, including the offer of one bereavement visit to a family, and liaison with other bereavement services (i.e. Child Bereavement UK) for provision of other support as necessary
Who to refer?

The team welcomes referrals for specialist palliative care which meet the following criteria:

 Geographical Boundaries

 We will accept referrals for any child or young person accessing paediatric services at RHCG.

Age

  • All antenatal referrals of a patient with a candidate condition
  • Children / young people up to their 16th birthday
  • Young People ages 17-18 who continue to access paediatric services within Royal Hospital for Children

Clinical Criteria 

A patient should have a serious illness which is likely to shorten life plus an additional requirement for specialist palliative care input. For example:

  • Any child considered to be at the end of life (including facilitating rapid discharge for end of life care) 
  • Expectation that the child/ young person will die within the next 6-12 months/ have a high probability of a rapid or sudden decline 
  • Have had at least 2 hospital admissions with life-threatening episodes within the past year 
  • Have had an irreversible decline in condition to extent that escalation of treatment to intensive care is not appropriate 
  • Symptom management that requires specialist palliative care input 
  • Assistance with anticipatory and emergency care planning once already discussed/ in collaboration with local paediatric lead 

 Agreement from child/young person and/or family to refer

 If a patient has been referred for face-to-face clinical input then the patient / family must be aware of and have agreed to the referral

Who can refer?

The team will accept referrals from any healthcare professional. If a patient requires to be assessed by a member of the team the named consultant on the child or young person’s care must give approval.

How to refer?
  • Electronic referral via TrakCare - Paediatric Supportive and Palliative Care consult
  • Urgent referrals: 0141 452 4894
Useful contacts

CHAS

 Children’s Hospices Across Scotland (CHAS) has been providing support to children with life-shortening conditions and their families for nearly 30 years. RHC and CHAS collaborated to form the Supportive and Palliative Care team at RHC which was launched in December 2019. CHAS offers family respite and support though their hospices and homecare services. CHAS also support end-of-life care and bereavement care provision to children and families in both hospices and at home. Additional information about CHAS services can be obtained from the hospital team, by visiting their website https://www.chas.org.uk/ or calling 01389 722 055 (Robin House, Balloch) or 01577 865 777 (Rachel House, Kinross).

 

Child Bereavement UK (CBUK)

Child Bereavement UK supports families and educates professionals when a baby or child of any age dies or is dying, or when a child is facing bereavement. In addition to its national helpline, Child Bereavement UK offers face-to-face bereavement support. Support from CBUK is free and can be contacted on 0141 370 4747 (RHC site), via email GHsupport@childbereavementuk.org or online at https://www.childbereavementuk.org/