Caring for someone with a terminal illness
Being offered an Adult Carer Support Plan or a Young Carer Statement
Day 1 is counted as the day that you are identified by your local authority as looking after someone with a terminal illness. Or the day that you approach your local authority for support as a carer looking after someone with a terminal illness. Once you are identified the local authority must offer you an Adult Carer Support Plan (ACSP) or a Young Carer Statement (YCS) within 2 working days (weekends and public holidays are not counted), unless there are unforeseen circumstances, in which case you must be offered an ACSP or a YCS as soon as possible.
Your ACSP or YCS having a conversation
Your local authority must have a conversation with you to identify your immediate or urgent personal outcomes (goals) and needs for support. They must do this within 5 working days of you requesting, or accepting the offer of an ACSP or YCS. If you are not able, or do not want to, have this conversation within 5 working days, you can ask for a later date. This means it will take longer to complete your ACSP or YCS.
Light Touch ACSP or YCS
Following this conversation, your ACSP or YCS must be prepared within 10 working days of you requesting, or accepting the offer of an ACSP or YCS (unless you asked for a later date). This may be a shorter version than usual. It is sometimes called a ‘light touch’, but must include information on your immediate or urgent caring role needs, and what support has been arranged for you.
Read about caring for someone with a terminal illness in the Coalition of Carers in Scotland leaflet
What is a terminal illness?
A terminal illness is a condition or illness which cannot be cured and is
likely to lead to someone’s death. It may also be called a life shortening
or life limiting illness. Someone can live for years, months, weeks or
days with a terminal illness following their diagnosis.
Someone may be living with more than one terminal condition, which
can have different care needs that change over time.
How do I know if I am a carer of someone with a
If someone with a terminal illness needs help and support because of
their condition, and you offer that to them, you are a carer. This
support might include the palliative care we mention above.
You might be a family member, including a partner, or friend of someone
who needs support because they have a terminal illness.
As a carer, you are entitled to an Adult Carer Support Plan or a Young
Carer Statement to help identify what support you need in your caring
role. You might need support more urgently depending on the person’s
terminal illness, which can be discussed with your local council.
What is an Adult Carer Support Plan or Young Carer
An Adult Carer Support Plan (ACSP) or a Young Carer Statement (YCS)
starts with a conversation with your local council to discuss your caring
role and what is important to you in your life.
It helps plan what support you might need if you wish to continue caring
for someone who is terminally ill, and what support could help you to
have a life alongside caring.
If you are looking after someone with a terminal illness, an important
part of the conversation will involve identifying your needs for support,
including any immediate or urgent needs.
What are the timescales for starting and completing an
Adult Carer Support Plan (ACSP) or Young Carer
If you are caring for someone with a terminal illness, you may be able to
get an Adult Carer Support Plan or Young Carer Statement more quickly.
In this instance, a terminal illness is defined as a progressive disease
where the person is not expected to live more than six months.
Your Adult Carer Support Plan, or Young Carer Statement should be
completed within 10 days, with the timescales set out on the left hand
side of this page.