FAQ - Being a sibling carer

Some adult siblings think of a ‘carer’ as a family member who lives with their brother or sister and helps with:

• Washing and dressing
• Making meals and drinks
• Cleaning and laundry

But the definition of a carer is actually much wider than this. Think about what you do for your brother or sister that you wouldn’t do for an adult without a disability. This might include:

• Answering the phone to your brother five times a day when he calls for support or because he is lonely
• Reading through bills with your sister and helping her to understand them
• Advocating for your brother’s needs at meeting with a social worker
• Phoning a hospital when your sister is admitted to let them know how she prefers to communicate

You do not need to live with your brother or sister to think of yourself as their carer. Your brother/sister might live:

• In residential care
• In supported living
• With your parent(s) or other family members
• By themselves, with a housemate or with a partner

Recognising the role that you play in your brother or sisters life can help you to access more support for yourself. Benefits of recognising yourself as a sibling carer:

• Protection from discrimination under the Equality Act 2010*
• Right to request flexible working hours and to have time off in emergency situations
• Recognition of your role within other services. Some GP services allow sibling carers and their disabled brother or sister to visit the surgery at the same time to avoid two trips and have earlier access to new vaccinations
• Having a carers assessment, to look at the support you need to continue your caring role
• May be entitled to carers allowance, depending on the number of hours you provide care

*England/Wales/Scotland. In Northern Ireland you are protected under the Human Rights Act and Section 75 of the Northern Ireland Act. This requires public bodies to promote equal opportunities for carers.

As a carer for your disabled brother or sister, you can request a carer’s assessment from the local authority. This looks at your needs as a carer, not at your brother or sister’s needs (if your brother or sister needs more support, ask the local authority for an assessment of their needs). The carer’s assessment should look at what support you need to keep caring, such as respite breaks.

Find out more about a carers assessment from Carers UK

Other types of support for you as a sibling carer:

• Join a sibling support group or facebook group
• Search online for your local carers association
• Find support on other facebook groups relating to your brother or sister’s diagnosis.
  

You might be able to claim Carer’s Allowance if you’re looking after your brother or sister for 35 hours a week or more and your earnings are below a certain cap. Visit Gov.uk to check the eligibility criteria for Carer’s Allowance. You don’t have to live with your brother/sister to be claiming Carer’s Allowance, but if someone else (such as a parent) also cares for your brother/sister, then only one of you can claim.

Carer’s Credit may be helpful if you aren’t eligible to receive Carer’s Allowance and spend 20 hours a week or more caring for your disabled brother. Carer’s Credit helps to fill in the gaps in your National Insurance contributions. Whilst this isn’t direct financial support, receiving credits may help you in future if you apply for National Insurance based benefits yourself, or State Pension.

Use the Turn2Us benefits calculator to make sure you are claiming all the benefits that you are entitled to. It’s advisable to do this once a year, as benefit guidelines do change or your circumstances might have changed.

Find out more:

• Carers UK – Carer’s Allowance
• Carers Trust – Money and benefits
• Citizen’s advice – Benefits
  

At work, you have statutory rights and contractual rights. Your statutory rights are the ones that are written in law. Your contractual rights are the ones that are written into your work contract.

As a carer, you have statutory rights to:

• Time off for caring emergencies
• Request flexible working
• Protection from discrimination

Find out more about your rights as a carer at work from Carers UK

It’s advisable to look back at your employment contract or speak to your employer about their policies in this area.

Read about the experiences of sibling carers who have spoken to their employers about their caring role:

• Read Matt’s story
• Read Abby’s story
  

Yes. You’re entitled to time off from work to deal with an emergency. An emergency might include a breakdown in the current care arrangements or an illness (including an exacerbation of a current illness or disability). You don’t have to provide proof and you don’t have to put your request in writing. You don’t have to be ‘the main carer’ or have proof of your caring status. The requirement is that ‘someone depends on you for care’.

You’re allowed ‘a reasonable amount’ of time off, and there’s no set amount in law as it depends on the situation. For example, an employer might allow you emergency carers leave so that you can sort out an urgent breakdown in care arrangements, but may ask you to take compassionate leave or annual leave if the situation continues.

Whether emergency carers leave is paid or unpaid will depend on your employer and what policies they have. They don’t legally have to provide this as paid leave.

You can find out more here.

Yes. Check if your employer has a policy around planned carers leave, as you may be entitled to a certain amount of paid leave (meaning you don’t need to use your annual leave entitlement).

If they don’t, you may be entitled to unpaid leave. In England, Wales and Scotland the Carers Leave Act 2023 (comes into force 6th April 2024) entitles you to take planned leave to take care of your disabled brother or sister. There is currently no equivalent law in Northern Ireland.

Here are some key points about eligibility for planned carers leave under the carers leave act:

• You can take leave “to give or arrange care for a ‘dependant’ who has a disability”
• You don’t need to live with your brother or sister to take carers leave, they just need to “rely on [you] for care”
• You don’t need to provide proof that you’re a carer or that your brother or sister is disabled

Here are some key points about taking planned carers leave:

• You can take up to your usual working week each year (e.g. if you usually work three days a week, then you can take three days a year)
• You don’t have to take it all at once. It can be taken in half or full days
• If the request is for a half-day or a day, you need to give at least 3 days notice. If it’s more than this, you need to give double the amount of notice for the time you intend to take (e.g. if you want to take 2 days, you need to give at least 4 days notice)
• If you have more than one disabled brother/sister you can still only take one week of carers leave in total and you’d need to share this between them
• You can use the leave to give care (such as attending a hospital appointment) or arrange care (such as liaising with social workers and managing a care package)

Find out more here.

Universities should offer support to students who are carers. What’s available will vary from university to university. The kind of support that might be available could include:

• Financial support, such as grants, bursaries and hardship funds
• Support with managing workload and deadlines (some may offer lower grade boundaries)
• Emotional support, e.g. counselling or communities/support groups for carers

Find out more:

• UCAS – Students with caring responsibilities
• Carers Trust – Supporting higher education students with caring responsibilities
• Read Holly’s story: Holly – “How my sibling relationship changed as I moved away to university”
  

You’re not alone! Many siblings in this situation experience resentment or guilt. It can feel like being between a rock and a hard place where neither choice feels like a good one. Some siblings feel angry that this is the life they have been given and that they have had no say about being placed in this situation.

Some siblings feel that after their parents die, they become ‘next of kin’ and have parental or caring responsibilities for their disabled brother or sister. This isn’t the case. Siblings have no legal responsibility to provide care and support.

It doesn’t have to be an all-or-nothing situation. Try and find a way that works for you without the resentment, by just doing what you can. What tasks a sibling can and cannot do needs to be a discussion between the sibling, their disabled brother or sister, and adult social care.

It’s OK to say no to tasks that you don’t want to do. You are taking care of yourself and in the long run, this is a much better decision for both you and your brother. In fact, it’s vital.

Remember – it’s OK to have your own life.

You might find it helpful to chat with other siblings who feel the same about this. Join a sibling support group or facebook group.

Here’s our advice for building a better relationship with care home providers:

1. Be confident. You do have the knowledge, you do have the expertise and you have built up years of experience on your brother or sister’s medical, behavioural, communication and personal needs.
2. Build relationships with the people who acknowledge and support you in your role as an advocate or carer for your brother or sister e.g. a strong relationship with an epilepsy nurse will be helpful if care home staff struggle to recognise seizures.
3. Communicate clearly with managers who are ultimately accountable for your brother or sister’s care. If things go wrong, a good manager will take responsibility and work with you to make changes. Be assertive, not aggressive – this will get you better results.
4. Be kind to support workers as they have a difficult job and often receive little recognition for their role. Thank them when they go the extra mile. They will be more likely to do it again in future and build a positive relationship with your brother or sister.
5. Know the difference between a personal mistake and a poor culture. Mistakes will happen – we are all human. It’s important to recognise the difference between a personal mistake that someone takes responsibility for, and an organisational culture of poor care, neglect or abuse. If the latter is in effect, take action and make a formal complaint and report safeguarding concerns.
6. There are ways you can be more assertive. You may find that it’s difficult to put your point across when you’re face-to-face with people. Send an email in advance or jot down relevant points to take with you. Take a friend, and ask them to remind you of the points you want to make. Just having someone with you can boost your confidence to communicate your views. They can also help by taking notes of what was said in the meeting.
7. Know that you can change providers if the organisation does not meet your brother or sister’s needs. Even if you have been told there are few providers in your area, it’s important to tell adult social care that your brother or sister’s needs are not being met by the current care provider.
   

It’s really frustrating when you’re not listened to as a sibling, and it’s not acceptable. You have such a valuable role in your sister’s life and you deserve to be heard. Here are some suggestions for tackling this:

1. Be specific about what help your sister needs. For example, don’t say ‘My sister needs someone to check in on her’, say ‘My sister needs reminding to brush her teeth and take her medication every day’. Read our guide on getting a care needs assessment for more detail.
2. Don’t let somebody tell you that you are not allowed to give your opinion as a sibling. As a close family member with an active interest in your sister’s wellbeing, your opinions on her care should be heard.
3. Get support for yourself. The phone calls and letters can feel endless at times – make sure you take some time out for yourself too and that you have your own life. You must look after yourself first in order to look after your sister.
4. If you want to make a complaint, do so in writing and be clear about the outcome you would like for your sister. Keep a record of your complaint and consider taking your complaint further if your complaint is not resolved. Read our guide on making a complaint for more detail.