Advance care planning 

Advance care plans (sometimes known as emergency care plans) can help people with a life-limiting or life-threatening condition plan for and receive care at the end of their life that is in line with their wishes. Talking with the child or young person, and their parents or carers, at appropriate stages gives them the opportunity to influence the care that they receive and improves their experience of care. This includes involving parents and carers when a potentially life-limiting or life-threatening condition is diagnosed in a baby during pregnancy. Advance care plans should be appropriate to the circumstances and continuously updated throughout the delivery of care and support. These plans are not a legally binding documents, and decisions within them can be changed where appropriate. Alongside family wishes and preferences, the information within the plans will include individualised treatment plans for a range of medical scenarios, as well as specific information about cardiopulmonary resuscitation. 
NICE Quality Standard QS160 states that services should have evidence of local arrangements to ensure that children with life limiting illnesses (where possible) and their parents are involved in developing an advance care plan, acknowledging that this may start as early as prenatally. 
The documents used to record the plans agreed between the family and those caring for them may differ from region to region. The APPM does not endorse one specific document but rather recommends that any plan used should be in line with current evidence-based clinical guidance (NICE NG61) and quality standards (NICE QS160). 
The APPM has sort to include examples of Advance care plan documents from across the United Kingdom. Revisions to the popular Children and Young Person’s Advance Care Plan ( are currently underway, seeking to not only update the document but also to address some of the persisting concerns around flexibility, length and tailoring to specific clinical scenarios. Other Advance care plan documents included reflect services addressing the needs of their local population. 

Advance care plans by region 

East Midlands 
East England 
London and South East 
North East 
North West 
Northern Ireland 
South West 
West Midlands 
Yorkshire & Humber 
Jersey individualised ACP 
local plan reflecting CYACP 
RESPECT document 
Co-ordinate my Care 
Antenatal Emergency care plan 
Evelina Emergency care plan  
Withdrawal care plan  
Royal Marsden ACP  
SPACE service ACP  
Deciding right document 
Pan NI document 
Pan Scotland 
CYACP and Wishes document 
Pan Wales document 


It gives me great pleasure that we welcome the 5th edition of the APPM Master Formulary released on the 10th anniversary of the formation of the Association for Paediatric Palliative Medicine. The Formulary has become an important core resource for the prescriber working in paediatric palliative medicine. 
The Formulary brings together all available paediatric palliative prescribing information in a single volume, utilising up to date published research and consensus expert opinion. It continues to keep pace with new guidance on existing medication and introduces newer drugs pertinent to the field of paediatric palliative medicine. 
In this edition, we welcome an increase in our pharmacy support, a neonatologist and an international contingent of reviewers. Their engagement ensures the Formulary continually raises the quality standard and maintains clinical relevance. It is a reflection of the Formulary’s success and impact that is now translated into several languages including Russian, Bahasa Indonesian and Spanish. 
The ethos of maintaining a formulary that is free to access and download will continue via the APPM website ( It is anticipated that revisions to the Formulary will now be every few years and a print format will be available to buy at cost via the APPM website. 
The APPM wishes to acknowledge the meticulous, diligent work of Dr Sat Jassal for coordinating, leading and editing all Formulary editions to date. We are very grateful for the excellent pharmacy support, led by Anita Aindow and to the many contributors and reviewers, old and new, for their hard work and analytical eye. In particular we wish to thank our international colleagues for their input, whose insights and perspectives have been highly valuable. Finally thank you to the APPM membership for their peer review (and proof reading!) of the Formulary. 
As with all previous editions, the Association for Paediatric Palliative Medicine is pleased to support the new 5th edition APPM Master Formulary as a clinically relevant and up to date publication, providing support to all prescribers caring for infants, children and young people requiring palliative care. 
Dr Anna-Karenia Anderson ( 
Chair of the Association for Paediatric Palliative Medicine 
Hard copies of the APPM formulary (in A5 size) are available for £10 plus P&P. 
Please submit your details using the form and we will be in touch with payment details. 
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