Decisions about future care plans are, by their very nature, personal and sensitive. Their complexity is one reason why it is vital that everyone involved in those decisions feels they have the freedom to speak up, and that they will be supported, listened to, and action taken when they do.

The Universal Principles for Advance Care Planning has been jointly published by a coalition of 28 partner organisations, in response to the Care Quality Commission report ‘Protect, Connect, Respect – decisions about living and dying well’ (2021). We are pleased to be one of the 28 named organisations who have supported the development of, and contributed towards, this publication, as a member of the Ministerial Oversight Working Group.

The six Universal Principles for Advance Care Planning are for the person, those important to them, practitioners, and organisations involved in supporting Advance Care Planning conversations and honouring their outcomes.

The sixth principle is that “Anyone involved in Advance Care Planning is able to speak up if they feel that these universal principles are not being followed”.  

This final principle should be applied across all settings throughout the health and care system to foster a culture of speak up, listen up and follow up.

Freedom to Speak Up Guardians are an alternative person for any worker to speak up to if they feel unsure or unable to do so in other ways. There are now over 800 Freedom to Speak Up Guardians, not only in primary and secondary care but also in hospices and independent providers. The Department of Health and Social Care White Paper ‘People at the Heart of Care Adult Social Care Reform’ sets out plans to explore ways in which Freedom to Speak up Guardians can be introduced in the social care sector.

Dr Jayne Chidgey-Clark, National Guardian for Freedom to Speak Up, said: “These six universal principles should be used to drive improvements in inclusion, equality and diversity everywhere across the country.  It is essential that anyone involved in Advance Care Planning decisions feels able to speak up if they feel the principles are not being followed. Fostering a Speak Up, Listen Up, Follow Up culture will help to make speaking up business as usual.”

You can find your Freedom to Speak Up Guardian here:


Read Dr Jayne Chidgey-Clark’s reflections in her blog Speaking up about end of life care