Working and being a carer

Not everyone thinks of themselves as a carer. But recognising that you are a carer is important in getting the practical, emotional and financial support you need. If you carry on working, you may also need support in the workplace. In any workplace around the UK, about 1 in 9 people are working while caring.

Balancing work and caring can be demanding. But carrying on working can also be positive. You can have a carer’s assessment to find out what kind of support you can get. You may also be entitled to financial help, such as benefits or grants. Try to talk to your manager about your situation as soon as possible. They can tell you about the support available in your workplace.

It is important to know what might happen when the person you care for is having tests or treatment. This may help you to understand some of the possible effects on your working life. We have information about different types of cancer and their treatments.

Some people may need help with their transport. Some GP surgeries and local voluntary groups can arrange volunteer drivers, and the hospital may also be able to help.

Being a carer

Not everyone thinks of themselves as a carer. You may think you are just doing your bit to help. Recognising that you are a carer is important in getting the support you need. As well as working, you may have other family responsibilities.

For many people living with cancer, the practical and emotional support of family and friends is vital. As cancer treatments improve, more people are living with cancer for longer.

As a result, there are almost 1.5 million people in the UK caring for someone with cancer. Becoming a carer is often something you have not planned for. It may happen suddenly or over time.

Being a carer is physically and emotionally demanding, but it can also be a rewarding experience. As a carer it is very important you get the practical, emotional and financial support you need. If you carry on working, you may also need support in the workplace.

Getting a balance between being a carer and working can be challenging but not impossible. In any workplace around the UK, about 1 in 9 people are working while being a carer. Carrying on working can benefit a carer, their employer and the person they care for.

It is important to look after yourself. It helps in your caring role, in your relationship with the person you care for and in your work life.


Making decisions about caring

It is important to find a balance between the support you want to give and what you can realistically do. This is especially important when you are balancing work and caring.

Before you decide, you may need to:

  • talk to your manager or employer about possible flexible working arrangements
  • talk to other people in your life about the help they can offer
  • find out about practical or financial support you or the person you care for may be entitled to.

It is important to make decisions with the person you care for. They may already feel as if they have lost a lot control over their lives.

Health and social care professionals are there for you too. You can ask them questions about your caring role. But they cannot share medical information with you about the person you care for, unless that person gives permission.

You can have a carer’s assessment to find out what kind of support you can get from your local social services or social work department. Carer’s Trust can tell you about local organisations that can help with practical support. You may also be entitled to financial help, such as benefits or grants.

I didn’t really consider myself his carer. I just thought of myself as his fiancée. He wasn’t well, so I looked after him.

Lisa


How you might feel

As a carer you may have different feelings, such as sadness, anger, guilt or loneliness. When you are balancing caring with working, these feelings may be hard to cope with at times.

It is a good idea to have someone you can talk to about how you feel. This might be a partner, close friend or family member. It could be someone at work who listens to you and supports you.

If you feel able to, speak to the people you work with and your manager. Tell them about your situation and how it may affect you at work. Your workplace may have a carers network or another support network that could help.

Some carers may feel guilty about not doing enough for the person they care for. Or they may feel that they are not giving their best at work, or are putting pressure on their colleagues. Try to be kind to yourself and avoid telling yourself what you should do. Taking care of yourself during a very stressful time in your life is important.

Some people find it easier to talk to people who are not involved with their situation. If your employer has an employee assistance programme (EAP), you could use that to contact a counsellor. GP practices may have their own counsellors, or be able to refer you to one.

You can contact our cancer support specialists for free on 0808 808 00 00 for information on how to find a counsellor.

We also have advice on coping with your feelings and getting the support you need.


Working while caring

Balancing work and caring can be demanding. But carrying on working can also be positive:

  • It can be important for giving you social contact and friendship. Your co-workers may be a good support for you.
  • There may be other carers in your workplace who you could share experiences with. This could be through a staff carers network, if your workplace has one.
  • You are less likely to have money worries.
  • It gives you an identity separate to being a carer and can help your self-esteem and confidence.

Working and having a career are often an important part of who we are. Taking care of yourself as a carer includes having your own work goals. This may involve making some changes or delaying new training or learning. But you should not see this as negative. Some of the things you learn as a carer may help you in your working life.

Carrying on working also has advantages for employers. Supporting working carers, for example with flexible working, means they keep valuable staff and their skills. Many carers have years of experience in their job. Staff who are supported by their employer are often more committed.

Try to talk to your manager about your situation as soon as possible. This means they can tell you about the support available in your workplace, and the ways they can help you.


Diagnosis and treatment

It is important to know what might happen when the person you care for is having tests or treatment. This may help you to understand some of the possible effects on your working life. Knowing more about what to expect can help you to prepare and think ahead.

The person you care for may want you to be with them at different times. The support they need will depend on their individual situation and it may change from day to day.

You may not know the best way to support them at first, or you might worry about saying the wrong thing. Listening and letting them talk openly about their feelings is often one of the best ways to support someone.

We have detailed information about different types of cancer and their treatments. We also have information about talking to someone with cancer.


Tests and diagnosis

Having tests and waiting for their results can be a difficult time. The person you care for may need a number of visits to hospital before the diagnosis is certain. Tests and appointments can take up a lot of time. You may need to think about whether you will need time off work to be with the person you care for.

You will usually be supporting your family member or friend with their diagnosis of cancer. At the same time, you may be struggling to cope with your own feelings. This could affect your ability to work well and to concentrate. You may need some time off work to get over the shock and to adjust to your own feelings. Try to tell your manager about the situation so they can support you.


During treatment

The support the person you care for will need depends on their treatment plan. They may need to have a combination of different treatments. The cancer team at the hospital will tell them what is involved.

Once you know what will be required, you can think about the support you might need at work. This is a time when flexible working might be useful. It may help to discuss this option with your manager.

The person you care for may need to stay in hospital while they have treatment. If you want to be near them and the hospital is some distance away, this could affect how much time off work you might need.

Treatment may also be given as an outpatient. This means having treatment at hospital without staying overnight. The person you care for may not need you to be with them at every appointment, or may just want you to take them home from hospital. This can depend on the treatment and how they react to it.

You could talk to the person you care for about the most important times they need you to be there. This means there may be times when you do not need to be there. It is also important to think about the help you can get from others.

Surgery

Some people do not need to stay in hospital overnight after an operation. This is called day surgery. For other types of surgery, a person might need to stay in hospital for a period of time. How long this is for will depend on the type of operation and the person’s recovery.

After major surgery, some people may need to go to hospital for therapies, to help them adjust and recover. For example, this could be speech therapy or physiotherapy.

Regularly visiting the person you care for while they are in hospital can be very tiring, especially if you are balancing this with work.

You may also need time off work to care for them when they come home, or to take them back to hospital for appointments. Try to take time to rest and look after yourself as well.

We have more information about surgery.

Radiotherapy

Radiotherapy treats cancer using high-energy x-rays. It is usually given as an outpatient. Treatment usually takes place between Monday and Friday, and a course of treatment may take up to several weeks.

Each treatment takes only a few minutes. But travelling to and from hospital, and waiting in hospital for treatment to begin, can add up to a significant amount of time.

If you plan to go to hospital with the person you care for during their radiotherapy treatment, the radiotherapy staff may be able to arrange treatment in the morning or late afternoon. This could mean you will need less time off work.

Chemotherapy

Chemotherapy uses anti-cancer (cytotoxic) drugs to destroy cancer cells. It is usually given as an outpatient, but it can take most of the day. Some people may need to go into hospital overnight, or for a few days. The drugs are often given as an injection into a vein (intravenously), or sometimes as tablets.

People usually have a break of a few weeks between treatments, to allow them to recover. Knowing how often the chemotherapy drugs are given will help you when arranging time off work with your manager. The chemotherapy nurse will explain how often treatment will happen to the person you care for. The whole course of chemotherapy treatment may last for several months.

The person you care for may need someone with them at home for the first few days after chemotherapy. It can be hard to predict how they will react until after a session. Their reactions to the treatment might change as treatment goes on. If they experience certain side effects, for example an infection, you need to take extra time off work to care for them.

It is important to tell your manager that some things can be unpredictable, so you may need time off work at short notice.

Other anti-cancer drugs

Targeted therapy drugs interfere with the way cancer cells grow. They are given in a chemotherapy unit every few weeks as a drip (intravenous infusion) or as tablets. The side effects are often easier to manage than with chemotherapy treatment. The treatment lasts for several months.

Hormonal therapies reduce the level of certain hormones in the body, or block their effects on the cancer cells. Most of them are given as tablets, but some are given as injections every few weeks or months. A person will usually take these drugs for several months, or even years. But people usually cope well with the side effects of hormonal therapy.


Help from others

It is important to think about how other family members and friends can help out. This can help you to balance work and caring, and to look after yourself too. Make sure you involve the person you care for when thinking of who to ask for help.

People are often keen to help but may not know the best way to do so. It can help to ask people to do specific things, such as having a rota for helping with hospital appointments and treatments.


Planning for visits to hospital

Try to plan for hospital visits and arrange the time off work with your manager well in advance. There are other things you can do to save time or make it easier:

  • Find out how easy it is to park a car, and if it’s free or there are reduced fees for parking. Some hospitals have special arrangements for people with cancer.
  • Allow yourself plenty of time, especially for treatments. There may be delays, and things can often take longer than expected.
  • If you are going to be at the hospital for a while, find out if there is somewhere you can eat, or take a packed lunch.
  • Take something with you to help pass the time while you are waiting.


Help with transport

Some people may need some help with their transport. Some GP surgeries can arrange volunteer drivers, and the hospital may also be able to help.

Some areas have local voluntary groups, which are sometimes called good neighbour schemes. They provide practical help to people in need. This often includes help with transport to hospital or a GP surgery. You could also ask family and friends about setting up a rota for providing help with transport.


Follow-up treatment

When treatment is finished, the person you care for may need to have regular follow-up appointments. Some people may also need scans or other therapies, such as physiotherapy or speech therapy.

The end of treatment can be a difficult time. The person you care for may feel insecure because they see less of their cancer doctor and nurse. They may still be coping with treatment side effects and with difficult feelings. They may worry about the cancer coming back.

It takes time to adjust to life after cancer treatment, and to recover from the treatment. Try to offer as much help as you can, as this process can take longer than expected.

We have information about the emotional and practical issues people often face at this time, and advice that may help.

I had a flexible employer who let me work around my husband’s hospital appointments and chemotherapy. I had to switch off from the cancer when I was at work, so it gave me an ‘escape’ as soon as I walked through the office doors.

Jane

Back to If you are working while looking after someone with cancer

Making decisions about work

If you’re a carer you may want to stop working temporarily or completely. It’s important to consider the implications of your decision.