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Caring for someone with an incurable illness

Your needs as a carer

The role of a carer can be very challenging, but there’s help out there for you, both financially and to support your mental health.

Carers UK estimates that there are 11.5 million unpaid carers in the UK who are looking after a loved one.

You could be looking after a family member or friend who has a disability, mental or physical illness, or who needs extra help as they grow older, or are diagnosed with an incurable illness, or are moving towards the end of their life.

If you are one such person, then you will know only too well just how difficult a role this can be. Keeping your own mental and physical wellbeing as healthy as possible can sometimes feel like a struggle. You might also be having financial difficulties. But there is help out there for you.

Carer’s needs assessment

If you care for another person and are aged 18 years and over, you are entitled to ask your adult social services at your local council to carry out an assessment of your needs to find out if you’re eligible for support. The assessment might recommend things like:

someone to take over caring so you can take a break
training in lifting and handling techniques
help with taxi fares if you don’t drive
advice with carers’ benefits.

The assessment is usually done face to face and someone from the council or a related organisation will ask you questions about how you’re managing with your caring and what you need to do. Be as honest as possible and explain how it affects your life. It’s best to be realistic about the situation, including the limits of the care you’re able to provide and the impact your caring is having on your life.

Care and support plan

Following the assessment, you should receive a care and support plan setting out how the council can (or can’t) help you. This might include help with costs, which might then mean you need to take a financial assessment first. You might also qualify for benefits for carers, to help with the costs.

How to challenge a local authority’s decision

If you’re unhappy with the outcome of the assessment, you can make a formal complaint. Your local authority should give you a copy of the relevant complaints procedure if you ask for it. If you remain dissatisfied with the council’s response and live in England, your final option is to take the matter to the Local Government and Social Care Ombudsman .

Go to the NHS website’s page about the carer’s needs assessment for more information.

Need to talk?

If you are finding your caring responsibilities too challenging, you might find it helpful to speak to someone. Marie Curie, the end-of-life charity, runs a free Support Line Mon–Fri, 8am-6pm and Sat, 11am–5pm. You can find out more on the Marie Curie website .

You might also find our article about coping with change and uncertainty helpful.

Financial support for carers: learn about Carer’s Allowance, Carer’s Credit and other benefits that you might be eligible to receive.
Carers’ rights at work: as a carer you have legal rights at work, including compassionate leave, flexible working and protection from discrimination.
Carer support at Katharine House Hospice: each month, the Living Well centre holds a family and carers’ group get together; find out more.