Carers Rights Day takes place on 26 November. It’s an annual campaign which helps to raise awareness of unpaid carers and the rights that they are entitled to. Every carer has rights and there is help and support available.

There are an estimated 68,000 unpaid carers in East Sussex, with around 34,000 additional carers as a result of the pandemic. Many carers are not aware of their rights or what support they are entitled to. The Care Act 2014 provides carers with certain rights, so whether they are a new carer or have been caring for someone for a while, it is important to understand what rights are available and how to access the support available.

Alice’s story mother and daughter baking

East Sussex Young Carers have been working with young carer, Alice, who is 16 years old. Alice looks after her mum who has fibromyalgia and anxiety. This means she experiences constant pain, exhaustion and limited mobility. Alice helped her mum to have a shower, get dressed, look after her infant sibling, cook and do the housework. Although Alice enjoyed caring for her mum, it meant she often missed school. She had little time for herself and was struggling to think about what life would be like after her exams.

A support coordinator made a referral to Adult Social Care requesting an assessment and consideration for a personal assistant. Alice’s mum had not wanted to ask for help previously due to her own anxiety. However, the support coordinator had established a good relationship with mum and Alice. She was able to help them see how the right support could be beneficial.

Alice was apprehensive about someone else caring for her mum as she felt it was her role and responsibility. She had been doing it for a long time. The support coordinator worked with Adult Social Care to ensure mum and Alice could meet and choose a personal assistant together. It was important that Alice had a say in the caring activities she wanted to continue to do so that she did not feel pushed out. This has worked really well and the personal assistant now comes in regularly to help mum and to care for the younger sibling.

Alice is now studying at college and has good attendance. She wants to work in social care in the future so is looking for a part-time job in this field.

For questions or to discuss a case please call the Hub on 0300 777 2011 or email

What rights are there?

A carer’s assessment

A carer can be someone looking after a family member, partner, friend or neighbour who can’t manage without their help. Carers can approach Adult Social Care in East Sussex and ask for a carer’s assessment.

Where a carer is sharing caring responsibilities with another person, including a child under 18, a carer can each have a carer’s assessment. Even if the person they care for does not meet the eligibility criteria or has chosen not to seek support from Adult Social Care.

Flexible working and taking time off in emergencies

If a carer is working, unpaid carers have the right to request flexible working, time off in emergencies and parental leave.

The Employment Rights Act 1996 gives all employees the right to take a ‘reasonable’ amount of time off work in order to deal with an emergency involving a dependant. It is at the discretion of the employer whether or not the time off is paid or unpaid. If a carer is an employee with 26 weeks continuous employment at the time, they can have the right to request flexible working. They also have the right not to be discriminated against or dismissed because they have made the request.

Financial entitlements

It is important to know what benefits a carer and the person they care for are entitled to. It might make a difference to pension entitlements in the future or bring in extra money to help pay for care.

Free flu jab

A carer is entitled to a free flu jab each year if they receive a carer’s allowance or are the main carer for an older or disabled person who may be at risk if they get sick.

Elizabeth Russell is an unpaid carer living in East Sussex who looks after her husband. She says;

“As a carer I feel that it’s important to understand what is available to me. Knowing your rights and how to apply for assistance can be a minefield, so it’s reassuring to know that support is out there for carers, especially in the current situation.”

“Understanding about carers’ allowance and other entitlements as well as what I should know as a carer when dealing with health services gives me the confidence to ask the right questions and get the best care for my husband.”

Read more about carers rights on the Care for the Carers website.

Care for the Carers is the Carers Centre for East Sussex. They help carers understand their rights and provide the health and social care systems they need. Get in touch on 01323 738390, email or text 07860 077300.

Read the `Do you look after someone’ booklet from East Sussex County Council here.