For Carers & Family

Practical caring

Understanding the basics of tube and line care gives you confidence to help and to know when something is wrong.

• Learn how to prime a line, connect a feed bag, and flush the tube or line
• Know the pump alarms and what they mean
• Understand what the feed formula is and how to store it correctly
• Know the signs of infection — redness, swelling, fever, pain — and act quickly
• See our Line & Tube Care guide and Complications guide

The emotional reality of caring

Caring for someone you love is rewarding — and exhausting, frightening, and sometimes invisible to others.

• Fear — about what happens if something goes wrong, about the future
• Grief — for the life you both had before, for mealtimes and spontaneity
• Guilt — for needing a break, for having needs of your own
• Resentment — it is normal, and it does not mean you love them less
• Isolation — your social world may have shrunk significantly

These feelings are not weaknesses. They are a sign of how much you are carrying.

Working with the care team & advocating

As a carer, you are a vital part of the care team. You may know the person better than anyone in a clinical setting.

• You have a right to be included in care discussions (with the person's consent)
• Keep a record of symptoms, feed volumes, and any concerns to share at appointments
• Do not be afraid to raise concerns — you are often the first to notice changes
• Ask for a carer's assessment to be included in care planning
• If you feel unheard, ask for a second opinion or a patient advocate

Looking after yourself

Carer burnout is not a failure. It is what happens when one person carries too much for too long without support.

• Your own health appointments still matter — do not cancel them
• Talk to your GP about how you are coping; anxiety and depression are very common
• Respite care may be available through the local authority or NHS — ask the care team
• Carers UK and Carers Trust offer practical and emotional support
• Online communities, including this one, offer connection with people who understand

Your rights & support in the UK

As an unpaid carer, you have legal rights and may be entitled to financial and practical support.

• Carer's Assessment — you are entitled to one from your local authority; it looks at your needs, not just theirs
• Carer's Allowance — you may be eligible if you provide 35+ hours per week of care (check gov.uk/carers-allowance)
• Respite care — short breaks funded through the local authority or NHS continuing healthcare
• Employer rights — carers have the right to request flexible working; the Carer's Leave Act 2023 introduced unpaid carer's leave
• Universal Credit — carers may be entitled to a carer element

Emergency preparedness

Knowing what to do in a crisis means you can act quickly and calmly. Preparation is everything.

• Keep the person's emergency contacts and NHS number accessible at all times
• Know the signs of line infection (CRBSI) — fever, rigors, redness — and act immediately
• Know the signs of tube displacement and the protocol for your specific tube type
• Keep a printed copy of their care plan at home for emergency services
• The Emergency Card can be printed and carried in a wallet or bag

See our full Emergency Guide for step-by-step protocols.