All Children and Young People (CYP) are offered the opportunity to have an Advance Care Plan (ACP). An ACP is a document which provides the CYP and/or their families the opportunity to discuss any wishes or desires they would like to fulfil with their remaining time. It also allows for conversations to be had about any decisions or plans a CYP, and/or their family would like for when they die or are entering end of life care.

It is entirely the decision of each child or young person and their family as to whether they have an advanced care plan. An ACP can be created, reviewed, changed, or discarded at any time.

The Children and Young People’s Community Palliative Care Team (CYPCPCT) team will discuss with the child or young person together with their families any priorities or wishes they may have, and what support they want from the team to accomplish these desires. Some experiences the team have helped to achieve include trips to Disneyland, watching live premiership football, go kart racing, Peppa Pig world and more. The support from CYPCPCT can help to maximise the childs or young persons quality of life during phases of their illness when they are stable/able.

Having an advance care plan in place provides the opportunity for a CYP and/or their family to have some element of control over events that are arriving sooner than they could have anticipated. The team can spend time discussing what they would like in place for when end of life care is imminent, or for when a CYP has died. During these conversations the team will ask if the CYP has a preferred place to die. This could be at their home, the hospice, or the acute hospital setting. For those who wish to die at home the CYPCPCT can provide a 24/7 on call rota. This ensures the CYP, and their family are supported, and that the death is as comfortable and pain-free as possible.

For more information on advance care planning and to preview the information involved please visit the Child and Young Person’s Advanced Care Plan Collaborative (CYPACP) website.