Paediatric Supportive & Palliative Care

TEAM OVERVIEW

The PSPCT consists of Medical Consultants, Clinical Nurse Specialists (CNS), Diana Children’s Nurse (DCN) and Project Support as follows:

Medical Consultants:

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

Clinical Nurse Specialists (CNS):

• Michelle Ward, Clinical Nurse Specialist in Paediatric Palliative Care
• Elizabeth Anne Kelly, Clinical Nurse Specialist in Paediatric Palliative Care

Diana Children’s Nurse (DCN):

• Caroline Porter, Diana Children’s Nurse - includes commitments to CHAS and remaining health boards in the West of Scotland

PSPCT Administrator:

• Fiona McCreadie, Team Administrator

Programme Support provided by:

• Coral McGowan, Patient Services Manager

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

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

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.

• Electronic referral via TrakCare - Paediatric Supportive and Palliative Care consult
• Urgent referrals: 0141 452 4894

Useful contacts and resources:

Click here to access Anticipatory Care Planning

My Anticipatory Care Plan (My ACP) for babies, children and young people was developed by Healthcare Improvement Scotland working with a range of partners. Published in 2018 it provides a comprehensive booklet which is designed to support the identified goals of care of a child with a life limiting condition.

Click here to access Association of Paediatric Palliative Medicine – APPM Formulary

The Association for Paediatric Palliative Medicine represents doctors, nurses and allied health professional across all care settings in the UK.  The Formulary brings together all available paediatric palliative prescribing information in a single volume, utilising up to date published research and consensus expert opinion.

Click here to access Bereavement Charter for Children and Adults in Scotland

This Charter provides a set of statements which describe how in Scotland we can support a person or group of people experiencing bereavement.  Good bereavement care is a human right.  This Charter is underpinned by a desire to make sure that in Scotland, we can do all that we can to support people who might be experiencing difficulties following the death of someone they know or somebody in their community.  It is the responsibility of everyone in Scotland to ensure this is achieved.

Click here to access British Medical Journals (BMJ)

Archives of Disease in Childhood – Making decisions to limit treatment in life-limiting and life-threatening conditions in children: a framework for practice.

Click here to access Brightest Star Charity

Supporting bereaved families.

Click here to access British National Formulary for Children (BNFC)

Key information on the selection, prescribing, dispensing and administration of medicines used for children.

Click here to access Children’s Hospices Across Scotland (CHAS)

Children’s Hospices Across Scotland, is a registered charity that provides the country’s only hospice for children and young people with life-shortening conditions.

Project ECHO (Extension for Community Healthcare Outcomes).  ECHO is a free collaborative model of clinical education and care management. To join email: projectecho@chas.org.uk

Click here to access Children in Scotland requiring Palliative Care, CHISP reports 1, 2 & 3

Click here to access Child and Young Person Acute Deterioration Management (CYPADM) form

Click here to access Child Bereavement UK (CBUK)   

CBUK provide support to parents and families across NHS Greater Glasgow and Clyde (GG&C) where a child is not expected to live or has died, and to families across Scotland whose care has involved the Royal Hospital of Children Glasgow.  They also support GG&C staff affected by the death of a child through drop-in and one-to-one sessions and other staff training and debriefs.

Click here to access Children’s Health Scotland

Children’s Health Scotland is dedicated to promoting the healthcare rights and needs of all children and young people across Scotland. 

Click here to access free e-learning resource produced by Children’s Health Scotland that promotes a greater understanding of the healthcare right and needs of children and young people (CYP) and their families.

Click here to access European Association for Palliative Care (eapcnet.eu)

The European Association for Palliative Care is a membership organisation dedicated to the promotion and development of palliative care throughout Europe.   

Click here to access Family Support 

Royal Hospital for Children, Glasgow - Family Support and Information Service offering 'one-stop shop' approach, making health care more accessible to meet parent, carers and patient's needs. Service Leaflet

Click here to access Held in Our Hearts

Scottish charity providing baby loss counselling and peer support to families.

Click here to access Hospice UK

Hospice UK is the national charity for hospice and end-of-life care.  Working to ensure everyone affected by death, dying and bereavement gets the care and support they need when they need it.

Click here to access International Children’s Palliative Care Network (ICPCN)

ICPCN’s mission is to achieve the best quality of life and care for children and young people with life-limiting conditions, their families and carers worldwide, by raising awareness of children’s palliative care, lobbying for the global development of children’s palliative services, sharing expertise, skills and knowledge.

Click here to access International Children’s Palliative Care Network (ICPCN) free e-learning courses 

Click here to access Kindred Scotland - Charity for parents of children with complex needs.

Click here to access Louis Dundas Centre Great Ormond Street Charity 

The aims of this joint academic/clinical Centre hosted by both GOSH and ICH are to conduct integrated, high quality, collaborative studies to inform practice; and the development and implementation of educational and training programs designed to meet the needs of professionals serving children and young people with palliative care needs in the UK and across the world.

Click here to access Medicines for Children

Practical and reliable advice about giving medicines to your child.

Click here to access Mummy’s Star

Mummy’s Star is a charity in the UK and Ireland dedicated to women and birthing people diagnosed with cancer during pregnancy or within 12 months of giving birth, and their families.

Click here to access Muslim Bereavement Support Service

Registered charity that offers bereavement support from an Islamic perspective.  Supporting bereaved mothers who have lost a child at any stage.  Confidential service is offered by trained volunteers.

Click here to accessNational Institute for Health and Care Excellence (NICE).  End of life care for infants, children and young people with life-limiting conditions: planning and management

The guideline covers the planning and management of end-of-life care for infants, children and young people (aged 0 to 17 years) with life-limiting conditions.  It aims to involve children, young people and their families in decisions about their care and improve the support that is available to them throughout their lives.  

Click here to access Quality standard (QS160)

Click here to access National Wellbeing Hub for those working in Health and Social Care

NHS Education for Scotland (NES)

Click here to access Death of a child

Click here to access Support Around Death Video Wall - for health & social care professionals

Click here to access Palliative and end of life care: enriching and improving experience

Click here to access NHS Scotland - Guidance for staff to support families who wish to take their child home after death

Click here to access Office for Rare Conditions Glasgow

The Office for Rare Conditions is working to put patients to the forefront, providing information and support to all affected by rare and undiagnosed conditions.

Organ Donation and Transplantation

NHS Blood and Transplant Organ Donation and Transplantation clinical website.  The site aims to share knowledge and expertise, in order to ensure the highest standard of care to organ donors and transplant patients.

Click here to access ODT Clinical - Organ Donation and Transplantation

Click here to access NHS Blood and Transplant 

Click here to access Organ Donation Scotland

Click here to access NHS Organ Donation

Click here to access Paediatric Critical Care Society (PCCS)

The Paediatric Critical Care Society is a professional, multi-disciplinary membership organisation representing the interest of those delivering paediatric critical care in the UK.

Click here to access Paediatric Pain Profile (PPP)

The Paediatric Pain Profile (PPP) is a behaviour rating scale for assessing pain in children with severe physical and learning impairments.

Click here to access Paediatric Palliative Care Research

A network for accessible, sustainable and collaborative research in paediatric palliative care.

Click here to access Palliative Drugs

Essential independent drug information for palliative and hospice care.

Click here to access Paediatric End of Life Care Network (PELiCaN)

The Paediatric End of Life Care Network (PELiCan) National Managed Clinical Network was set up in 2019.  The network aims to support delivery and improve access to high quality, patient and family centred, end-of-life care for children and young people regardless of age, ethnicity or geographical location.

Click here to access PAMIS – Promoting a more inclusive society

Supporting people with profound and multiple learning disabilities, their families, carers and professionals.

Click here to access The Queens Nursing Institute Scotland (Qnis) - Wellbeing Practices

Click here to access Rapid Effective Assistance for Children with potentially Terminal illness (REACT)

Working to improve the quality of life for the children with life-limiting illnesses living in financially disadvantaged households throughout the UK.

Click here to access Resuscitation Council UK (ReSPECT)

The ReSPECT process creates personalised recommendations for a person’s clinical care and treatment in a future emergency in which they are unable to make or express choices.

Click here to access Richmond’s Hope

Making a difference to the lives of bereaved children and young people

Click here to access Royal College of Paediatrics and Child Health

The membership body for paediatricians in the UK and around the world.

Click here to access Stillbirth and neonatal death charity (Sands)

Scottish Children and Young Peoples Palliative Care Network – SCYPPCN

SCYPPCN is an informal network of multidisciplinary and multiagency professionals established to work to ensure that palliative care for children and young people and their families is delivered in a seamless and integrated way across Scotland.  The group provides a Scotland wide forum to influence policy making.  

If you wish to join the network, please contact:  joanne.henderson@aapct.scot.nhs.uk

Click here to access Scottish Cot Death Trust

Click here to access Scottish Partnership for Palliative Care

The Scottish Partnerships for Palliative Care (SPPC) brings together health and social care professionals from hospitals, social care services, primary care, hospices and other charities to find ways of improving people’s experiences of declining health, death, dying and bereavement.

Click here to access Scottish Palliative Care Guidelines

Click here to access SiMBA – Simpson’s Memory Box Appeal

Scottish Government Policies

Click here to access Palliative and end of life care: strategic framework for action on Palliative and End of Life Care

Click here to access Children and Young People (Scotland) Act 2014

Click here to access The Prince & Princess of Wales Hospice

Click here to access Together for Short Lives

Together for Short Lives is the UK charity that supports the 99,000 children in the UK with life-limiting conditions.  They also support the professionals and organisations delivering care to these children and families.

Click here to access Family Factsheets

Click here to access A Perinatal Pathway for Babies with Palliative Care Needs

Click here to access Caring for a child at end of life - a guide for professionals on the care of children and young people

Click here to access Biannual Compendium of Research Abstracts

Click here to access A Guide to Children's Palliative Care

Click here to access UNICEF UK

Click here to access Winston's Wish

Supporting grieving children and young people after the death of someone important.