Work and cancer series for carers

Work and cancer series for carers

The Macmillan work and cancer series Macmillan produces a range of information about work and cancer: For people living with cancer Questions to ask about work and cancer Work and cancer For people looking after someone with cancer Questions for carers to ask about work and cancer Working while caring for someone with cancer For employers 10 top tips for line managers Managing cancer in the workplace Cancer in the workplace videos All of the above titles are included in The essential work and cancer toolkit, a pack to help employers support their employees. Further information The following titles are also available: Your rights at work when you are affected by cancer Self-employment and cancer To order any of this information, visit be.macmillan.org.uk/work Alternatively, visit macmillan.org.uk/work

About this booklet 1 About this booklet This booklet is for anyone who is working and caring for someone with cancer. You are a carer if you provide unpaid support to a partner, family member or friend with cancer who could not manage without your support. You don t have to be living with the person you care for. This booklet is to help you cope with the effects of being a carer on your work life. We have included information about getting support at work, flexible working, your rights at work and talking about cancer with your employer and the people you work with. There is also advice if you are self-employed. Any information about benefits in this booklet applies from April 2016 to April 2017. For more information If you have more questions or would like to talk to someone, call the Macmillan Support Line free on 0808 808 00 00, Monday to Friday, 9am to 8pm, or visit macmillan.org.uk If you would prefer to speak to us in another language than English, interpreters are available. Please tell us, in English, the language you want to use. If you are deaf or hard of hearing, call us using NGT (Text Relay) on 18001 0808 808 00 00, or use the NGT Lite app.

2 Working while caring for someone with cancer We have some information in different languages and formats, including audio, ebooks, easy read, Braille, large print and translations. To order these visit macmillan.org.uk/otherformats or call 0808 808 00 00. How to use this booklet The booklet is split into sections to help you find what you need. You don t have to read it from start to finish. You can use the contents list on page 3 to help you. If you find this booklet helpful, you could pass it on to your employer, colleagues, family and friends. They may also want information to help them support you. We have included quotes from employers and employees who have been affected by cancer in the workplace, which you may find helpful. If you would like to share your story, you can visit macmillan.org.uk/shareyourstory Some quotes have been taken from our online community, which you can visit at macmillan.org.uk/community On pages 59 64 there are some contact details of other useful organisations.

Contents 3 Contents Caring for someone with cancer 5 Working and being a carer 11 Your rights at work 33 Looking after yourself 43 Further information 53

Caring for someone with cancer Being a carer 6 How you might feel 9

6 Working while caring for someone with cancer 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 (see pages 43 51). It helps in your caring role, in your relationship with the person you care for and in your work life.

Caring for someone with cancer 7 Different ways of caring Caring can mean different things. What it involves will depend on the needs of the person you care for and what you are able to do. Caring can mean: being supportive and listening to their concerns providing transport being with them for appointments and during treatment collecting prescriptions helping with personal care, such as with washing or dressing taking care of their children helping with cooking, shopping and everyday household chores talking to others on their behalf, such as healthcare staff or social workers getting advice or information, paying bills or filling in forms. 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.

8 Working while caring for someone with cancer 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 (see page 46) 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 (see page 61). You may also be entitled to financial help, such as benefits or grants. There is more information on this in our booklet Looking after someone with cancer. Visit be.macmillan.org.uk or call 0808 808 00 00 to order a free copy of any of our booklets. 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

Caring for someone with cancer 9 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. Our booklet Coping when someone close to you has cancer has advice on coping with your feelings and getting the support you need. Order a free copy at be.macmillan.org.uk

Working and being a carer Working while caring 12 Diagnosis and treatment 13 Talking to people at work 22 Making decisions about work 30

12 Working while caring for someone with cancer 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 (see page 29). 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 (see pages 34 36), 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 (see pages 22 28) 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.

Working and being a carer 13 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. Our website macmillan.org.uk/cancerinformation has detailed information about different types of cancer and their treatments. We also have information about talking to someone with cancer. Our information is available online, or as booklets, leaflets or audiobooks. To order free copies of these, you can visit be.macmillan.org.uk or call 0808 808 00 00. 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.

14 Working while caring for someone with cancer 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. The cancer registry When someone is diagnosed with cancer in the UK, some information about them is collected in a national database. This is called the cancer registry. It helps the NHS and other organisations plan and improve health and care services. The hospital will give information about the person, their cancer diagnosis and treatment to the registry automatically, unless they are asked not to. As with all medical records, there are strict rules to make sure the information is kept safely and securely. It will only be used for planning direct care or for health and social care planning and research. Talk to a doctor or nurse if you have any questions about the registry. If someone does not want their information to be included in the registry, they can contact the cancer registry in their country to opt out. If you are the parent or guardian of a child with cancer, you can opt out on their behalf. For more information, visit macmillan.org.uk/ cancerregistry. To find details about the cancer registry in your area, see page 64.

Working and being a carer 15 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 (see pages 34 36) 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.

16 Working while caring for someone with cancer 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 (see pages 44 45). 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.

Working and being a carer 17 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.

18 Working while caring for someone with cancer 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. We can send you detailed information about these treatments, individual drugs and ways of coping with the side effects. Call us on 0808 808 00 00 or visit be.macmillan.org.uk to order more information. 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.

20 Working while caring for someone with cancer 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.

Working and being a carer 21 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 a free booklet called Life after cancer treatment. This discusses the emotional and practical issues people often face at this time, and gives advice that may help. You can order this from be.macmillan.org.uk or by calling 0808 808 00 00. 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

22 Working while caring for someone with cancer Talking to people at work Telling your employer about your responsibilities as a carer usually means they can support you. If they know about your situation, they are more likely to understand your needs. You do not have to tell your manager, employer or colleagues that you are caring for someone with cancer. But it may avoid some problems in the future if you do. For example, if you want to request flexible working (see pages 34 36) you will need to give your employer more details. Try to find out more about your employer s policy and procedure for supporting carers (if they have one) before you talk to them. You can do this by checking your contract, employee handbook or intranet, if any of these are available. Or you could speak to your manager or human resources (HR) department. The terms manager or employer can mean different people at your workplace who are involved in your employment. You can talk to any or all of the following people: your line manager usually the first person you talk to your HR department (if there is one) a staff or union representative.

Working and being a carer 23 Meeting with your manager The first step is to have a meeting with your manager or employer to tell them about your responsibilities as a carer. When someone close to you is diagnosed with cancer, it is usually a difficult and stressful time. You may feel as if your life has completely changed. Your manager should be sensitive to the changes and difficult feelings you are coping with. If you feel nervous about the meeting, you can ask someone you trust to be there with you. This could be someone you work with, a trade union representative or even a friend. Everyone at the meeting should respect your privacy, and the the things that you discuss at the meeting should remain confidential. Your manager may make notes at the meeting. You can ask to have a copy of these. The notes should not be shared with anyone else without your permission. It may be helpful to make your own notes. You could use the notes page on page 65 of this booklet. You will probably want to give a brief explanation of your family member or friend s situation, and the treatment or care they will need. It may help to explain that things can change as treatment goes on, sometimes at short notice. Try to explain your commitments and any concerns you have. You can ask what leave you are entitled to (statutory entitlements) and what other support is available. At the meeting, your manager may ask how you are coping and what your immediate work concerns are. They may also ask if you would like other managers or people you work with to know about your situation, and how much you want to tell them.

24 Working while caring for someone with cancer If you prefer not to tell people yourself, your manager could do this. Or you could ask someone else who can do it sensitively. Your manager may ask you how you think being a carer will affect: you personally your attendance at work being able to manage your work commitments your ability to do your job, both in the short- and long-term. You and your manager can talk about ways of doing your job to suit both you and your employer. They will need to think about how to balance your time off work with the workload of the rest of the team. If they have procedures in place for carers, they may need to apply them flexibly. The HR department should also be aware of your legal rights as a carer (see pages 33 41). If your employer does not have procedures to support carers, it may be difficult for them to make decisions. Our pack called The essential work and cancer toolkit may be helpful, as it has information for both employers and employees. I realised that there was a definite decline in my sister s health. I called work and said I was terrified that I might lose my job, but she needed 24/7 care so I couldn t work any more. When I got the message back that there was no way I would lose my job it was a massive relief, and it felt like somebody cared. Claire

Working and being a carer 25 How your employer can support you You may want to talk to your manager about things your employer can do to help you as a carer. Employers can support carers in different ways. Try to think about the help that you might need. Some employers may offer: access to a private telephone so you can make or receive private calls access to email so you can contact the hospital or other people during work hours a reserved car parking space to make getting in and out of work quicker and easier a buddy or mentor at work who can support you. As well as talking to your manager or HR department, you may be able to: talk to an occupational health adviser get access to an employee assistance programme (EAP) counsellor for emotional support or counselling contact local support and networking groups through your employer.

Working and being a carer 27 Information from your employer Your employer should give you company information on: flexible working and work adjustment policies any policies on sick leave, sick pay, absence and leave (including emergency leave), and how using any of these policies might affect your wages any relevant company benefits, such as employee assistance programmes, occupational health and counselling services. Not all companies offer the same benefits. Some employers may not be able to accommodate requests for flexibility or changes to your role. But all employers should give you information about your statutory rights. These are legal rights based on laws passed by Parliament. Most workers, regardless of the number of hours per week they work, have certain legal rights. This includes having paid holidays, the right to ask for flexible working, and reasonable time off work to look after dependants in an emergency (see page 33 41). Certain workers are not entitled to some statutory rights. This could be anyone who is not an employee, such as an agency or freelance worker. If you are in this situation, it is important to get advice from an experienced adviser, for example at your local Citizens Advice (see page 60).

28 Working while caring for someone with cancer Your employer should also be able to provide you with further sources of information about: relevant statutory benefits how to talk to your colleagues about cancer and the challenges of being a carer specialist organisations, relevant charity helplines and websites, such as Macmillan and Carers UK (see pages 53 64) counselling services that may be available to you as an employee. We have guidelines for employers, which can be found on our website at macmillan.org.uk/work You can also call the Macmillan Support Line for free on 0808 808 00 00 for more information. After meeting with your manager After the meeting, you can ask for a copy of any notes your manager has made. Make it clear whether you want anyone else to see them. They should respect your right to privacy. If you need to discuss and agree on any points that were raised, ask for another meeting. It is usually helpful for you and your manager to have regular review meetings. You can discuss how the arrangements are working, and make sure you are getting enough support. Your manager should always discuss any possible changes to your work plan with you first.

Working and being a carer 29 Talking to other people at work Talking to the people you work with about your family member or friend s cancer can be difficult. You may worry about their reaction, or if the conversation might be awkward. You may decide to tell people you feel closest to at first. They may be able to help you plan how to tell others. Colleagues can often be supportive, and having someone who will listen to you can be helpful. You may find there are other employees in the organisation who are also carers. If so, it may be useful to share your experiences of the challenges of working while caring. Talking to others at work can have benefits: You have someone to talk to and it gives them the chance to support you. You can be open with them when you need help. They may come up with useful ideas to help you cope with your work. It can bring you closer to the people you work with. If you don t want to tell others You may prefer not to tell your colleagues about your situation, or to tell only a few people. It may be that you want to keep a part of your life as normal as possible. Whatever your reason, it is important your wish to be private is respected. Don t feel under pressure to explain things if you are not comfortable doing this. You know what works best for you and your situation.

30 Working while caring for someone with cancer Making decisions about work Some people may think about giving up work or taking early retirement to care for someone. But this could have a big effect on your life in a number of ways. So it is something you need to think about carefully before you decide. Giving up work will affect your finances. It may also make you feel isolated and out of touch with friends at work. Some carers get a lot of support from their friendships at work. Giving up work may also have an effect on your future career development. It may mean that you cannot keep your skills up to date. This could make it harder to get back into the job market later on. You may find it helpful to learn more about your rights as a carer and employee before making your decision (see pages 33 41). For more information about this, you can contact the Carers UK helpline (see page 61). Before giving up work, think about the following questions: Would requesting flexible working help you manage both working and caring? Could you take a paid or unpaid break from work to think about your options? Make sure you do not feel pressured to give up your job. If you do feel like this, you can speak to someone in your HR department.

Working and being a carer 31 Your finances Giving up work will also affect your finances. This includes your income, your pension and any employee benefits you are entitled to. Our financial guides can help you call them for free on 0808 808 00 00. If early retirement is an option, discuss it with your employer. For some people, it could be an advantage. But for others, it can leave them financially worse off. Our financial guides can discuss this option with you. If you are self-employed If you are self-employed, you will have more control over your working life than someone who is employed. But you will not have the same rights and protection. You and your family may also depend on the income from your business. This can put extra pressure on you as a carer if your working life is affected. We have a booklet called Self-employment and cancer. It is written for people with cancer, but you may find some of the information useful.

Your rights at work Your legal rights as a working carer 34 Protecting you from discrimination 40

34 Working while caring for someone with cancer Your legal rights as a working carer You have certain rights at work that may help make it easier for you to keep working while you are caring. These include the right to ask for flexible working arrangements, or to take time off work in an emergency. Flexible working arrangements By law, anyone in the UK who has worked for an employer for at least 26 weeks has the right to ask for flexible working. This means working a different pattern to the way you work now. You can apply for a permanent or temporary change to your terms and conditions. You can also make an informal request for flexible working arrangements. This means it is not requested under the law on flexible working. This option could be useful if you want to make a temporary or small change to the way you work now, and need the change to happen quickly. It may also be helpful if you want to try out a change before making it permanent.

Your rights at work 35 Flexible working arrangements can make the difference between carrying on working or leaving. These arrangements could include the following: Working from home. Flexible start or finish times. Compressed working hours this means working your normal number of hours but over fewer days. For example fitting in a five-day working week by working longer hours over four. Annualised working hours this is where you work the hours you are contracted for per month or year in a flexible way. Job-sharing or working part-time. Flexible holidays to fit in with alternative care arrangements. Requesting flexible working By law, you do not have an automatic right to flexible working. It is just your right to ask for it. But employers have a duty to deal with requests in a reasonable manner. An employer can refuse a request for flexible working. They have to give good reasons for doing so, and you can appeal the decision (see page 36). You have to make your request in writing and it must be dated. Your employer may have a specific form you can use. The Advisory, Conciliation and Arbitration Service (ACAS) and Carers UK (see pages 59 61) have leaflets on the right to request flexible working that explain how to go about making a request. Your employer must complete the process within three months. If your employer has more than one request from staff for flexible working, by law they should consider each case on its own merits.

36 Working while caring for someone with cancer By law, you can only make one request a year for flexible working. You can make other requests to your employer (just not under the law) if your circumstances change. If your employer refuses your request An employer can refuse a request for flexible working if it is not in the best interests of the business. This might be if it would be too expensive or could affect the performance of the business. If your employer refuses your request, you may be given the right to appeal. You may have some new information that would help them reconsider their decision. It is a good idea to get advice from your union representative (if you belong to a union), a staff representative or your HR department. If you are not given the right to appeal, you could suggest involving ACAS, or the Labour Relations Agency in Northern Ireland (see page 59), to help you and your employer discuss the possible options. Or you could raise a complaint (grievance) with your employer. Some situations may involve finding the middle ground. For example, your employer may agree to you working from home for a few days a week, rather than working from home full-time.

Your rights at work 37 Time off work in an emergency Everyone in the UK has the right to take a reasonable amount of unpaid time off work to look after dependants in an emergency. This is called time off for dependants. In England, Scotland and Wales, it is covered by: the Employment Rights Act 1996 (as amended by the Employment Relations Act 1999). In Northern Ireland, the laws are: the Employment Rights (Northern Ireland) Order 1996 the Employment Relations (Northern Ireland) Order 1999. A dependant could be: a mother, father, son, daughter, spouse or civil partner anyone who lives with you, but is not a tenant, lodger, boarder or employee someone who would reasonably rely on you to help them if they become ill or need you to make care arrangements for them. Possible emergencies can include: a breakdown in care arrangements (when someone who usually provides care cannot do it) the person you care for becomes more unwell or has an accident when you need to make longer-term care arrangements, for example when the person you are caring for needs more care.

38 Working while caring for someone with cancer You do not need to have been in your job for a certain amount of time before you can take time off work in an emergency. The law does not state how much time you can take it will depend on the circumstances. You must tell your employer the reason you are absent as soon as possible after the emergency has happened, and how long you expect to be off work for. Time off for dependants is likely to be unpaid, unless your employer s policies say otherwise. Your employer may have a policy for other types of leave for carers, or may be open to discussing leave arrangements. Some options could be: carers leave (paid or unpaid) compassionate leave borrowing holiday days from next year or buying additional days career breaks and sabbaticals (usually unpaid).

40 Working while caring for someone with cancer Protecting you from discrimination At work, the Equality Act (in England, Scotland and Wales) and the DDA (in Northern Ireland) can, in certain circumstances, protect carers from: direct disability discrimination harassment victimisation. Direct disability discrimination This is when you are treated less fairly than somebody else because you are associated with someone who has cancer. The person with cancer is protected by the law because of their disability. Direct disability discrimination includes situations where, because you are a carer, you are: not offered a job refused promotion, for example because your employer is worried you won t be focused on the job given less favourable employment terms (for example, lower pay).

Your rights at work 41 Harassment This is when you experience unwanted behaviour because you are associated with someone who has cancer. This behaviour may cause you to feel intimidated, degraded or offended. Whether or not the unwanted behaviour is harassment will depend on how you view the behaviour, and whether it was reasonable for it to have made you feel that way. Victimisation This is when you are treated unfairly because you have done, or will do (or someone thinks you have done or will do), something that the law protects. something that the law protects. This includes making a complaint about discrimination or harassment under the Equality Act or the DDA. Our booklet Your rights at work when you are affected by cancer has more information for carers who are in work. Order a copy by calling 0808 808 00 00 or visiting be.macmillan.org.uk If you feel your employer is not being reasonable It is important to try to sort out any problems by talking with your employer. But if this does not work, you may want to think about making a formal complaint (or grievance). Your employer should have a policy that explains how you do this. Ask a union representative or staff representative for further advice. If you find it difficult to settle the issue with your employer, you could contact ACAS, or the Labour Relations Agency in Northern Ireland (see page 59).

Looking after yourself Taking care of yourself 44 Financial support 47 If the cancer is advanced 48 If you are no longer a carer 49

44 Working while caring for someone with cancer Taking care of yourself Caring for someone is physically and emotionally demanding. It is important to look after yourself, as well as the person you care for. Being aware of the signs of stress, and how to manage when you feel stressed, can help you while you are caring. You may want to: have a general health check with your doctor try to keep active you could arrange a walk during your lunch break, by yourself or with others try to eat healthily and get enough sleep get time to yourself do things you enjoy and try to schedule one or two of them in each week talk to other carers Carers UK (see page 61) can help you find a group in your area ask nurses at the hospital about support available for family or close friends look at some of the organisations and websites that offer practical and emotional support for carers (see pages 60 62). The number one thing is to make time for yourself, and try not to be sucked in by everything else that is going on. It is not easy, but you need to look after yourself. Joe

Looking after yourself 45 Time for yourself You may need time for yourself to help you cope with the demands of being a carer and working. This gives you the chance to relax and do things you enjoy. Try to make this a priority. Don t worry about asking for help from your friends and family, or accepting help when offered. Some organisations offer respite breaks for carers. Ask your employer if this is available for you. Our booklet Looking after someone with cancer has information on how to look after yourself. Or you may like to speak to one of our cancer support specialists. Call us for free on 0808 808 00 00. Help from social services A social worker (sometimes called a care manager) is responsible for assessing what practical and social help you ll need, and what help the person you are caring for will need. A nurse involved in the person s care, or their GP, can arrange a referral. Or you can contact the local social services or social work department. You can find their number in the phone book or online under your local authority or council, or your health and social care trust. The social worker will visit and carry out a community care assessment for the person you care for. This may also be called a needs assessment. Each local authority has its own eligibility criteria, so services vary from area to area. If the person with cancer fits the criteria, your local authority has a duty to provide services to meet their needs. These are provided by social services, or by other organisations such as charities.

46 Working while caring for someone with cancer Some services are free from the NHS. But in other cases, your local social services will do a financial assessment to calculate whether you have to pay something. Services include: home care and sitting services equipment and adaptations to your home information and benefits advice meals on wheels laundry services breaks and respite care. Your social worker should stay in contact with you to check that your needs have not changed. Many social workers are trained in counselling and can offer emotional support. Carer s assessment As a carer, you can ask the social worker for an assessment of your needs. This is called a carer s assessment. You can talk about any help you need. It is important to keep healthy, and to balance caring with your life, work and family commitments. You can discuss these things with the social worker. You can still ask for this assessment even if the person you care for is not eligible for support or does not want to have an assessment of their needs. You can get more information about a carer s assessment by visiting macmillan.org.uk/carers

Looking after yourself 47 Financial support Cancer often means extra costs for you and the person you care for. This can include paying for travel to hospital, or increased food or heating bills. If you have to give up work or reduce your hours, your income may fall. You and the person you care for may be able to get benefits or financial support. You can call us for free on 0808 808 00 00 to speak to one of our financial guides or a welfare rights adviser. Our financial guides can assess your situation and give you personalised guidance. The benefits system is complicated and applying can take lots of time. Our welfare rights advisers are trained to help you claim any benefits you are entitled to. Our booklet Help with the cost of cancer has detailed information about financial help and benefits. Our booklet Looking after someone with cancer also has information on the different benefits and other types of financial support you may be entitled to as a carer. To order a free copy of any of our booklets, visit be.macmillan.org.uk

48 Working while caring for someone with cancer If the cancer is advanced If the cancer gets worse, the needs of the person you care for are likely to change. You can get advice on this from the person s GP, community or specialist nurse, or social services staff. You may need more time off work, especially if you are looking after the person at home at the end of their life. You may have to make decisions about carrying on working. Sometimes it may mean it is no longer realistic for you to keep looking after them at home. They may need a different type of care than you can provide for them. The demands of caring can also have an effect on you. Talk to your GP or nurses to find out more about extra support and help. You can ask social services for a reassessment of your needs as a carer, as well as those of the person you are caring for. Some people may decide they want to give up work for a period of time (see pages 30 31). Whatever you decide, this will be a difficult time for you and will affect how you work. Tell your manager about the change in your circumstances so that they can continue to support you. Our booklet called Caring for someone with advanced cancer has more information and advice that you may find helpful.

Looking after yourself 49 If you are no longer a carer You may no longer be a carer for a number of different reasons. The person you cared for may have recovered and no longer need your support. Or they may be in hospital or a care home. Even so, you will still be providing some care. You could still be regularly visiting them, or be involved in decisions about their care. You may no longer be a carer because the person you care for has died. Even if you felt prepared for this, you may still feel shocked and numb. It is common to have many different feelings, and sometimes physical symptoms. You may be deeply upset, and at the same time feel relieved. These are all natural and normal feelings to have. Coping with bereavement is a slow process. Work and bereavement Try to keep your manager informed about how you are feeling and any time away from work that you might need, including funeral arrangements. You could tell them what you want the people you work with to know, and if you are happy to be contacted while you are off work. Your employer may provide compassionate leave. Having regular contact with your manager while you are off work means you can talk about any changes or support you need to help you return to work. How much time off work you need will vary for each person. Some people take very little time off, while others need longer. Sometimes people who return to work quite quickly find they need to take some time off later on.

50 Working while caring for someone with cancer To begin with, you may need a temporary change in your hours or responsibilities, or to be able to work from home. Although there are often challenges when working in this situation, getting back into a routine can be a positive step. You may worry about seeing your colleagues for the first time when you return to work. Although it can be hard to be reminded of your loss, it is also important to have it recognised. You can just give them a simple thank you. You don t have to share any more than you want to. You may find it hard to concentrate, feel very tired and be easily distracted. Talk to your manager if you think it would be helpful to have someone review your work. Some people may not feel the full emotional impact of bereavement until some time after it has happened. If your employer has an employee assistance programme (EAP) you might find this helpful for emotional support and counselling. Let your manager and colleagues know when things are difficult and when you need their help. Our booklet After someone dies coping with bereavement has advice on dealing with this situation, and contact details of organisations that can help you. You can also call us for support on 0808 808 00 00. Getting back to work If your caring role has changed or ended, you may want to go back to your previous work pattern. Whatever the reason for this, it often means a period of change. If you have been through a bereavement, you will still need support from your manager.

Looking after yourself 51 If you have been off work for a while, it may be helpful to have a gradual, flexible return. It is a good idea to have a catch-up meeting with your manager first and to have regular reviews. Going back to full-time work, or to the responsibilities you had before, may take time to get used to. You may feel you have lost confidence or are out of date. Talk to your manager if you need training or support to help you. As a carer, you will have developed a lot of skills that employers value. Getting back to your usual work life can also be a welcome change. It can give you routine and normality in life, and the chance to make plans for the future. If you gave up work and are looking to get a new job, there is lots of advice on writing a CV, filling in application forms and performing well in job interviews. Your local library will have books on interview skills. Your local Jobcentre or Jobs and Benefits Office should offer you job search support. There are different websites that give career advice. These include: nationalcareersservice.direct.gov.uk (England) skillsdevelopmentscotland.co.uk (Scotland) careerswales.com (Wales) jobcentreonline.com (Northern Ireland). If you have gaps in your employment history because of your caring role, explain this on your CV or in person at an interview. Remember that you have developed many skills as a carer which may help you in your work.

Further information About our information 54 Other ways we can help you 56 Other useful organisations 59 Your notes and questions 65

54 Working while caring for someone with cancer About our information We provide expert, up-to-date information about cancer. And all our information is free for everyone. Order what you need You may want to order more leaflets or booklets like this one. Visit be.macmillan.org.uk or call us on 0808 808 00 00. We have booklets on different cancer types, treatments and side effects. We also have information about work, financial issues, diet, life after cancer and information for carers, family and friends. All of our information is also available online at macmillan. org.uk/cancerinformation There you ll also find videos featuring real-life stories from people affected by cancer, and information from health and social care professionals. Other formats We also provide information in different languages and formats, including: audiobooks Braille British Sign Language Easy Read booklets ebooks large print translations. Find out more at macmillan. org.uk/otherformats If you d like us to produce information in a different format for you, email us at cancerinformationteam@ macmillan.org.uk or call us on 0808 808 00 00.

Further information 55 Help us improve our information We know that the people who use our information are the real experts. That s why we always involve them in our work. If you ve been affected by cancer, you can help us improve our information. If you d like to hear more about becoming a reviewer, email reviewing@macmillan. org.uk You can get involved from home whenever you like, and we don t ask for any special skills just an interest in our cancer information. We give you the chance to comment on a variety of information including booklets, leaflets and fact sheets.