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 access National 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.
