Advance Care Plan

What is an Advance Care Plan?

An Advance Care Plan is a tool to help ensure that your child receives care in line with your family’s wishes.

• It helps to ensure that your child receives the most appropriate care, particularly in an emergency.
• It helps your family and healthcare professionals discuss and communicate information about your child’s healthcare needs, as well as your child’s and family’s wishes for future care.

Why might an Advance Care Plan be helpful?

Making an Advance Care Plan can feel emotional or overwhelming. However, there are many advantages to having one in place, these include:

• An Advance Care Plan ensures that your wishes are considered during the care of your child.
• It is very difficult to make rational and informed decisions during a crisis. An ACP means that a plan of action can be made before the situation occurs, during a time of calm, with people who know your child well. This can help you think about what kind of care is most appropriate, what aligns best with your wishes, what is best for your child, and how your family’s situation, hopes, and dreams can be taken into account.
• Writing the document doesn’t mean that the situation will necessarily arise, but if it does, you will be prepared to face the questions and decisions that need to be made.
• It helps to support good care, that is tailored to what your family see as most important.

When should I get an Advance Care Plan?

It is best to create an Advance Care Plan as soon as it is recognised that your child has a life limiting or life-threating condition, even if they do not have a diagnosis.

However, there is no time limit for starting an Advance Care Plan. You will remain able to begin this process at any stage during your child’s journey. If you don’t feel ready to have these conversations yet, it is completely fine to wait until the future.

Do I HAVE to make an Advance Care Plan?

No. Creating an Advance Care Plan is completely your choice and no one make you and your child undertake the process of Advance Care Planning.

It is important to remember that an Advance Care Plan is a document that is FOR your family, to ensure that your wishes are considered.

While there are many benefits to completing an Advance Care Plan, this is a personal decision. It can be an emotional and difficult process, and it’s okay to take your time or choose not to do it at all.

Top Tips for getting a Advance Care Plan

1. Don’t rush – take it step by step.
2. Try to complete this when things are a little calmer – perhaps when your child is more stable and you have a moment to breathe. It’s incredibly hard to think clearly when you’re in a high-pressure situation.
3. Get input from professionals who know your child well.
4. Involve your wider family if that’s helpful – it’s good to have different perspectives. This was really positive to ours, because it helps them to understand the process more clearly. We had our parents (daughters grandparents present at our initial meeting)
5. It doesn’t have to be all medical. Focus on day to day basis.
6. Ask for examples of other plans if you’re unsure what to include.
7. It can be a good idea to cover different scenarios. This means that you are prepared if these different circumstances do happen. For example, you may want a different plan in place if your child is unwell due to infection vs long-term deterioration.
8. Be honest about what’s important to you.
9. Reach out to others in similar situations as they always have similar thoughts process, questions and worries. We are all human.

Who owns the Advance Care Plan document?

Normally, as a parent, you should ensure that you have your Advance Care Plan with you. Each local area will have its own policies regarding how the document is shared, so it’s important to ask your healthcare team whether other professionals involved in your child’s care will also receive a copy.

In some areas, a full copy may be shared with your child’s GP and with healthcare professionals who are regularly involved in your child’s care, as well as those who might be contacted in an emergency.

It is a good idea to try to keep your Advance Care Plan with you when you are going to hospital. Although all relevant people are normally sent a copy of your plan, it’s best to ensure you have the latest version with you, in case there are any complications within the system.

What will my Advance Care Plan include?

An Advance Care plan contains several different sections. The Child and Young Person’s Advance Care Plan Collaborative have provided a template document of what an Advance Care Plan looks like and includes. You can access their website here. Click on the yellow box to open our booklet, which explains each section

Not every section is relevant for every family and child, so there may parts that don’t need to complete.

Reviewing the Plan

You can ask for your plan to be reviewed at any time, and your child’s care team will do this with you as regularly as you need. This ensures that the care plan continues to reflect your evolving hopes and needs, and that everyone remains on the same page about the best course of action. If things change over time, you can always speak with a member of your child’s care team and the plan can be updated at any point.

Transition to Adult Services

Transitioning to adult services may bring about some changes for your child’s Advance Care Plan. You may need to update the plan to reflect:

• New settings.
• New professionals.
• Slightly different expectations in adult care.

It is also important to note that adult services may focus more heavily on the individual’s best interest, as opposed to the wider family perspective.

If you would like to read more about transition to adult services, please see our articles on:

• Transition to Adult Services FAQs
• An easy read guide for young people transitioning to adult’s services

If you have any comments, ideas, or suggestions about this article don’t hesitate to get in touch with us at [email protected]

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