Work and finance: a guide for people with lymphoma

Transcription

1 Freephone helpline : a guide for people with lymphoma Money problems are common when people have any kind of cancer. Being off work, having to reduce your hours, cutting down on self-employed work or retiring early can all put a huge strain on your finances. And this often comes at a time when you have to find the money for extra expenses such as travel costs to the hospital. This information sheet aims to cover issues relating to work and finance that people with lymphoma have told us caused them the most difficulty. It will discuss: Working during lymphoma treatment: o talking to your employer and your colleagues o your rights in the workplace. Returning to work after your treatment has finished, which might be affected by: o how you feel physically and emotionally o what your employer will agree to o what you want from work now your goals and priorities o what you can afford o how your benefits might be affected o being self-employed. Finances during treatment and beyond: o sources of income while you are off sick: sick pay, occupational sick pay, benefits, using your savings, discretionary grants o help with housing costs and household bills o insurance policies and pensions o seeking advice about debt. You might be able to put off thinking about your finances during your treatment, but many people are not in a position to delay making decisions about their work and finances, even at this difficult time. In addition, there are certain forms of insurance you might be able to claim, or benefits you could apply for (some of which cannot be backdated), so it can be useful to look at your finances sooner rather than later. It is unlikely that you will have much energy for tackling your financial affairs once you are a few weeks into your treatment. 1/14

2 Once your treatment is over you might want to go back to work or college, increase your hours again or change your job altogether or you might decide to retire early. If you have deferred payments on loans, insurance or household bills or put off other financial decisions during your treatment, this might be a time when you have to reassess your finances. This is only a brief introduction to this vast and complicated subject and our main aim is not to give financial advice we are not qualified to do that but to highlight the main problems that can arise and to provide guidance about where to go for further advice and support. Navigating the benefits system is something that many people with lymphoma will have to do at some stage during their illness and treatment, and afterwards. At the time of writing this article we have separate information available on benefits and disability rights. This describes the various benefits you might be entitled to claim and lists useful contact details for agencies that deal with benefits or with problems that can arise with benefits. Call our helpline on if you would like this information, or download it from our website ( Working during treatment Many people give up work altogether or reduce their hours during their treatment but some people find work distracts them from their illness and they want to continue if they can. Other people feel they must continue working for financial reasons or because they have a business to run. Whether you carry on working when you are having treatment will depend on many things, such as: how you feel during your treatment if you have certain side effects such as fatigue for example, work can become very difficult the type of work you do whether manual or clerical, employed or self-employed, dealing with the public all day or working in an office whether you and your family can manage financially without full pay or without your input into a business. The determining factor in deciding whether to continue working is often the severity of any side effects you have from the treatment. When your blood counts are low you will be particularly susceptible to infection and should not be exposed to anyone with an infection or to crowded places such as public transport during the rush hour. It may be possible, however, to adjust your hours, work partly from home, or take time off when you are most tired or vulnerable to infection. Talking to your employer Although by law you don t have to do this, it is usually advisable to tell your line manager or employer about your lymphoma and the treatment you will be having. Most employers will be understanding and will try to be flexible in making adjustments to your work so that you can continue to work if you want to. Or they can advise you of 2/14

3 your position if you need to take time off. If you don t tell your employer and you are unable to do your job this could cause problems because they are then not bound by law to make any adjustments to enable you to work more easily. Some larger organisations will have occupational health departments or human resources (HR) departments to provide advice and support during and following serious illness. If you belong to a union it can be useful to approach a union representative for advice at this stage. If you don t want your employer, HR department or union rep to tell your colleagues about your lymphoma, they should respect your wish for privacy. If your workplace has had no experience of having an employee with cancer and no policy for dealing with it, your boss may not be aware of what the law expects of employers or of what they can do to help you to continue working. You could put together some information for your boss Macmillan Cancer Support includes a booklet called Managing cancer in the workplace in their Essential work and cancer toolkit resource that has been written specially for employers who have staff affected by cancer (the Macmillan orderline number is on page 13). Workplace discrimination Not all employers are understanding and some can even be difficult. If this is your situation or if you are worried that your employer won t be supportive or might even be prejudiced against you in some way it is important to remember that you have certain rights in the workplace. All people who have or who have had cancer are automatically classified as meeting the impairment criteria for disability under the new Equality Act The Equality Act 2010 (which has replaced the Disability Discrimination Act) gathered together and organised all previous anti-discrimination law and expanded the protection available. This Act protects employees and their carers against direct and indirect unfair treatment in the workplace. Under the Equality Act it is unlawful for an employer to treat you differently from other employees because of a mental or physical disability, including cancer. The law protects you from the time of your diagnosis, during your treatment and after your recovery. Under the Act an employer is obliged to make reasonable adjustments to your working arrangements during treatment and recovery to make sure you are not at a disadvantage compared with other people. Examples of reasonable adjustments might include an employer allowing you to work flexible or reduced hours or to have additional breaks to allow for fatigue. Moving you to lighter duties, adjusting performance targets and allowing you time off for check-ups or a gradual return to work once your treatment is finished would be regarded as other reasonable adjustments. It would be unlawful for your employer to downgrade your post or make you redundant, or to overlook you for training or promotion because of your illness. The Act also covers the recruitment process it is unlawful for you to be turned down for a job because you once had cancer, for example. 3/14

4 This is not to say that your employer is obliged to do whatever you ask for. They are not obliged to make changes to your job if those changes are unreasonable. For example, they would not be obliged to make changes that threaten the work of the organisation or changes that will put the organisation or business at financial risk. If you feel you have been unfairly treated, you should seek further advice. There are many sources of further information about the Equality Act and places to go for legal advice, for example your local Citizen s Advice Bureau (CAB) or neighbourhood law centre. Disability Rights UK is a useful organisation to approach for advice. If you are a carer, Carers UK provide helpful advice on how the Act safeguards your rights in the workplace. You will find contact details for these and for other organisations that provide legal advice in the Useful organisations section at the end of this article. What about your work colleagues? How much do you want your colleagues to know about your lymphoma? Colleagues can be surprisingly supportive, but don t be surprised if they seem a bit distant or if they don t behave in a particularly sympathetic way. They might not know how to talk about your illness and feel awkward broaching the subject, especially if you seem reluctant to talk about it. Some people would prefer their colleagues not to know, so that they can feel as normal as everyone else. People at work often guess that something is wrong, however, and this can create awkwardness. If you do feel able to talk about it, it can be helpful for everyone in the workplace if you explain how the treatment is affecting you and why you have needed time off. Returning to work Getting back to work can be an important step on the road to recovery, making you feel that life is returning to normal. When you go back will depend on: the physical effects of your treatment and how these might affect your ability to do your job how you are feeling emotionally the attitude of your employer what you want to do now whether you want to stay in your current job, change direction or retire early your finances and the need for an income. There are no hard and fast rules about when to go back, no guidelines that are appropriate for everyone. Most health professionals will leave it up to you to decide. Of course, for some people there will be little choice the impact of the illness and treatment on your household finances will often mean that you need to get back to earning as soon as possible. It might be helpful to ask yourself the following questions when you make plans about returning to work. 4/14

5 How do I feel physically? Have you recovered from the side effects of treatment? Do you still experience fatigue? Don t expect to be able to get back to a normal work routine straightaway you will probably have to take things gradually. How soon you go back will also depend on what you do for a living. Someone who does lots of heavy manual work will need to have recovered more physically than someone in an office-based job before they can return to work. How do I feel emotionally? Emotions will be just as important as your physical health. If your feelings are still up and down, or if you feel depressed, you might need a bit more time before you feel ready to pick up the responsibilities of work. On the other hand, returning to work can be therapeutic being busy is often a useful distraction. Can my employer help? Is your employer willing to consider a phased return to work? This might mean increasing your weekly hours gradually over a period of some months. Can you renegotiate some of your responsibilities to give you time to get back to normal? Is there the possibility of job-sharing or working part-time? Are there ways to make the return to work less stressful? You might want to start by avoiding a commute during peak hours, for example. These could all be seen as reasonable adjustments under the Equality Act 2010 (see page 3). This discussion before returning to work is your opportunity to discuss your needs and how you expect to feel when you go back. Try to build some flexibility into your planned return so that you can cut down again for a while if you find you are more tired than you expected. Remember that you continue to accrue holiday entitlement during your time off sick. Don t be embarrassed to take this time off after you have gone back. Some people use their holidays to attend follow-up check-ups, to avoid asking for more time off, though an employer should give you time off for such appointments. It might be that you d rather keep these appointments private and this is one way of doing this. What work do I want to do now? Are there changes you d like to make in your working life? Do you want to reduce the quantity of projects you commit to at work? Do you want to set yourself new objectives, or pursue a new direction? Many people change their life plans after the experience of cancer. Some people change job, retrain for another career, or decide to retire early. What can I afford? How much do you need to earn, and will you be better off going back to work? Can you afford to work part-time? Are you entitled to other benefits or tax credits to augment your income? What influence has your illness had on your pension contributions? 5/14

6 Will my benefits be affected? Some benefits can continue if you go back to work, but others will be stopped. Employment and Support Allowance would stop, for example, but you might be able to continue claiming Disabled Living Allowance if you can demonstrate that you have continuing care and/or mobility needs which will need to be met at work as well as in the home. It is important to get advice on your benefit entitlement before returning to work because failure to inform the Department for Work and Pensions (DWP) of any improvements in your condition could result in prosecution. Macmillan benefits advisers, who often work in conjunction with cancer information centres or CAB offices, specialise in helping people with cancer to deal with the benefits system, or you could ring the Benefit Enquiry Line for advice ( ). There is further information on benefits on pages 7 8. What if I am self-employed? There are sources of advice for self-employed people. You should contact the CAB or the DWP. There may be benefits that you are entitled to claim until things get back to normal. Your entitlement will depend on your income. It will also depend on your National Insurance contributions, and on whether or not these have been maintained during your illness. Macmillan s booklet Self-employment and cancer is a useful guide. Your finances It is helpful to consider your finances as soon as you are diagnosed or start treatment. Not only can your income be reduced during treatment but your expenses can go up, for example for: travel costs to and from hospital bus, tube and train fares, petrol and car parking charges extra household bills to keep the house warm while you are off work and not going out much; also higher food bills if you are having to buy convenience food instead of cooking yourself wigs, scarves and hats needed during a period of hair loss new clothes you need because you have lost or gained weight. In addition, if a partner or other family member has had to take time off work to help you, the household income could be under considerable strain. Sources of income and financial support while you are off sick Speak to your employer or HR department to see whether you will be entitled to sick pay, how much you could expect to receive and for how long, and to ask how being off sick could affect your pension entitlement. There are several sources of advice about benefits you might be entitled to and on how to apply for them (see below). You should also contact any insurance companies you have insurance cover with and your pension provider if you have a private pension. They should be able to advise you on any claims you can make and on whether payments could be waived for a while. 6/14

7 Sick pay: You might need to take time off work, either for a period of a few weeks or months or a few days every few weeks. If you have been earning enough to pay National Insurance contributions you will be entitled to Statutory Sick Pay, which your employer pays after you have been off work for 4 days and which lasts for a maximum of 28 weeks. If you have not been earning enough to pay National Insurance contributions, then you may qualify for Employment and Support Allowance. In addition, you might be entitled to occupational or company sick pay on top of Statutory Sick Pay. Your employer or HR department should advise you on this. Occupational sick pay: This is any sick pay greater than Statutory Sick Pay and differs from employer to employer. It is often the equivalent of full pay for a certain time (eg for 3 months or 6 months). After this period, many people would then be dropped down to half-pay for another few months. Benefits: You may be entitled to financial assistance. Many people do not claim the benefits they are entitled to. This is not just because they are reluctant or even embarrassed to do this, but also because finding out about benefits can be complex and time-consuming they are administered by several agencies and the rules governing them are complicated and undergo frequent changes (wide-ranging reforms to the benefits system are due to be brought in in April 2013, for example). Filling in the forms is very tiring when you are feeling unwell. For all these reasons it is often best to contact a benefits adviser from the very beginning of the process (see below). Which benefits you could apply for depends on many factors, such as whether or not you are working, your income and National Insurance contributions, any savings or other assets you might have, and the number of dependants you have. Some benefits are known as passport benefits because when you are in receipt of these, you can then claim for other useful payments. Benefits you might be eligible for include: Statutory Sick Pay (see above) or Employment and Support Allowance if you are unable to work Disability Living Allowance for under-65s or Attendance Allowance for over-65s if you have care needs or difficulty with getting around Working Tax Credit or Child Tax Credit if you are working but on a low income Pension Credit to top up your State Pension or occupational pension Carer s Allowance or Income Support if you are a carer Cold Weather Payments if you receive certain other means-tested benefits (eg Pension Credit) help with health costs if you are on Employment and Support Allowance you could get help with the costs of dental treatment, eye care, wigs and travel to hospital local authority benefits to help with housing costs, eg Housing Benefit (to help with rent), Council Tax Benefit, or discretionary housing payments help with mortgage interest payments. 7/14

8 Note that all people with a diagnosis of cancer are exempt from paying prescription charges in England. Prescriptions are free for everyone in Wales and Scotland. For the most up-to-date guidance you could: visit the Directgov website at which provides information about individual benefits and eligibility rules, and includes online application forms and links to relevant websites. The Government also runs a Benefit Enquiry Line if you would rather talk to someone ( ) find a benefits adviser. Benefits advisers are employed by various organisations and this differs from place to place. You could try your local CAB, cancer information centre or Maggie s Centre. Macmillan Cancer Support have a benefits advice service which can be accessed all over the country. Their advisers can provide information on benefits, tax credits, grants and loans and you can speak to them face to face or over the phone (for contact details for all these organisations, see pages 11 13) contact your local Social Services Department, which is part of your local council. They might be able to put you in touch with a social worker or advise you who to contact locally for advice. Your local Jobcentre Plus or your Inland Revenue Office might also be able to provide information and advice. Savings: Many people rely on savings to tide them over during their illness and treatment, to replace income or for extra expenses. Your savings can disappear quickly, though. If you have used up some or all of your savings in this way, remember that you might now be eligible to receive some benefits that you couldn t apply for before. It might be useful to ask a benefits adviser for help if you are in this situation. Other sources of financial support: In addition to the benefits system, there are a number of organisations that provide grants. Macmillan Cancer Support can offer financial help if approached on your behalf by a health professional or social worker. Leukaemia CARE can provide help with utility bills, supermarket vouchers or travel costs to hospital ( or There is a book that lists grants that individuals can apply for (The Guide to Grants for Individuals in Need by Catriona Chronnell) and this might be available at your local Social Services Department, library or CAB office. Depending on your job or career history, you might also be able to approach one of many occupational benevolent funds run by the armed services (eg the Soldiers, Sailors, Airmen and Families Association or SSAFA at emergency services and other groups such as teachers, bankers and ministers of religion. Help with housing costs and household bills If you are having trouble making your regular monthly repayments, for example to utility companies, it might be possible to defer payments for a few months until you get back on your feet. Don t just avoid paying without explanation it is better to tell these companies as early as possible that you are having difficulty paying. You should also seek specialist debt or benefits advice if you are having problems with bills. 8/14

9 If you have a mortgage and don t have mortgage payment protection insurance, some mortgage lenders will allow you to take a payment holiday or switch to interest only repayments to keep costs down in the short term. Talk to your mortgage lender to explain your situation and ask about your options. Your doctor may have to provide information about your illness and treatment in support of an application to defer payment (note that doctors often charge you for providing letters or reports like this). You may be entitled to assistance with housing costs. If you are on a means-tested benefit such as Income Support, income-related Employment and Support Allowance or Pension Credit, for example, you might qualify for Support for Mortgage Interest. You may also be able to defer council tax payments or you might be eligible for Housing Benefit to help pay rent. Again, the Directgov website or Benefit Enquiry Line or your local council s Social Services Department should be able to advise you on this. Insurance policies and pensions If you have insurance policy premiums to pay, for example for life insurance, critical illness cover, income replacement cover or loan or mortgage protection cover, contact the companies to see if a waiver of premium applies to the plan. This would mean that the company would have to pay the premiums for you while you were ill and unable to work. You might also be able to make a claim on a critical illness policy or an income replacement plan as a result of your diagnosis. It might be possible to borrow money against the value of an existing life assurance policy. Some people in need of money in a hurry will consider surrendering a policy or selling it. It is not likely that you will get the full value of the policy if you do this, but it can provide urgently needed cash in the short term. If you are thinking of taking any of these steps it might be helpful to see an independent financial advisor for advice about your options. They should be able to suggest ways of maximising your income without creating problems later on. A useful website that provides a portal to help you find a local independent financial adviser is You should seek advice from your employer or from your pension provider about your pension contributions. You will need to consider the implications of any contributions that are missed during the period of your illness. You may also want to consider whether or not pensions can be frozen, transferred or cashed in to help your financial situation. The independent Pensions Advisory Service and the Pension Service (run by the DWP) are other good sources of information (contact details on pages 12 and 13). Finding insurance after treatment You might find it more difficult to get life insurance for a few years after your diagnosis and treatment, even if you are in a prolonged complete remission. Initial insurance premiums are likely to be high. If you already have life insurance, it might similarly be difficult to increase the value of your policy for some years following your treatment, which might have implications should you wish to extend your mortgage. Once again, an independent financial adviser might be best placed to help you with looking for insurance products at this stage. 9/14

10 People with lymphoma can sometimes find it difficult to get affordable travel insurance, even when they are in remission, but there are specialist travel insurers who will insure you subject to a medical screening questionnaire. We have separate information on travel insurance which includes a list of insurers that other people with lymphoma have found helpful. Please telephone our helpline if you would like this information or download it from our website. Seeking advice on debt A prolonged period with reduced income and extra expenses might have left you in debt. It is important to seek advice as soon as possible. Being in debt is very stressful for you, your partner and family. There are specialist organisations that can provide you with information and advice about how to get your finances back on track. Always make sure that there will be no fee for the service before you accept their help because some debt management companies charge large fees. You will find some useful free sources of debt advice in the list of useful organisations. Conclusions You can carry on working during lymphoma treatment if you are able to and would like to do this. Most people find that they need to take some time off work, however, often because of treatment side effects such as fatigue. Your employer should help you to adapt your working life so that you can continue or should advise you on what sick pay you might be entitled to. If you have any difficulties with your employer remember that you are protected in the workplace by the Equality Act Returning to work after treatment will help you to feel that life is getting back to normal, but you might have to take it gradually. You might want to arrange a phased return to work, change your job or work pattern, or even retire early, depending on how you are feeling, what your employer will agree to and your financial position. If you are off work and have extra expenses due to your treatment your financial situation is very likely to be affected. You should seek advice about what sick pay, tax credits and other benefits you are entitled to and ways in which you might use any financial products you already have. It is sometimes possible to defer payments on household bills, loans or mortgages. It is often beneficial to seek guidance from a benefits adviser or from an independent financial adviser to help you maximise your income. Acknowledgement The Lymphoma Association is very grateful to Denise Maguire for reviewing this information sheet. Denise is an academic lawyer and disability rights advocator who has been personally affected by lymphoma. 10/14

11 Useful organisations ACAS (Advisory, Conciliation and Arbitration Service) ACAS is dedicated to the prevention and resolution of employment disputes. The website provides information about what to do if you feel that you have been unfairly treated in the workplace. Helpline: Benefit Enquiry Line (BEL, run by Directgov, see below) Government-run service that provides advice and information for disabled people, people affected by cancer and carers on the range of benefits available. BEL can send out leaflets and claim packs and can provide assistance with filling out benefit application forms over the phone Business Debt Line Offers confidential, independent, free advice on debt and cash-flow problems for people who are self-employed Carers UK Provides information and advice about caring, alongside practical and emotional support for carers. They aim to help carers make the most of their income and stay in paid work. Advice line: (10am 12noon and 2 4pm, Wednesdays and Thursdays) Christians Against Poverty (CAP) A debt counselling charity based in 190 UK centres for people of any or no religious beliefs. Also provides online advice service and self-help tools Citizen s Advice Provides advice about the law, benefits and financial entitlements. Visit your local CAB office for information about finding independent benefits advice. Consumer Credit Counselling Service This charity provides free and confidential debt advice and debt management services /14

12 Department for Work and Pensions (DWP) DWP delivers its customer service through the Disability and Carers Service ( which provides the Benefit Enquiry Line via Directgov to answer benefit enquiries. DWP is also responsible for the Pension Service ( ), which provides information about the State Pension, Pension Credit, Winter Fuel Payment and related benefits. The third arm of DWP is Jobcentre Plus ( ), which supports people of working age who cannot work or who are looking for work. Provides information about finding work and is responsible for delivering Statutory Sick Pay, Employment and Support Allowance, Incapacity Benefit and Carer s Allowance. Directgov ( A government website which provides information about a wide range of public services including benefits such as Employment and Support Allowance, Disabled Living Allowance, Attendance Allowance, Incapacity Benefit, Income Support and Carer s Allowance. Runs the Benefit Enquiry Line and the Benefits Adviser service, a general benefits checker ( and a debt advice service ( ManagingDebt/PlanYourWayOutOfDebt/DG_ ). Disability Law Service For free, confidential legal advice advice@dls.org.uk (or via website) Disability Rights UK Disability Alliance, the National Centre for Independent Living and the Royal Association for Disability Rights (RADAR) have now amalgamated to become Disability Rights UK, which campaigns and advises on all aspects of disability HM Revenue & Customs (HMRC) For enquiries about applications or entitlement to tax credits. Tax Credits Helpline: Law Centres Federation Free legal service, including advice on employment, housing, discrimination and welfare benefits, for people living within the catchment area of one of their 55 centres in England, Wales and Northern Ireland info@lawcentres.org.uk 12/14

13 Maggie s Centres At Maggie s Centres you can access information, benefits advice and emotional or psychological support. They are located throughout the country and also have online forums Macmillan Cancer Support Produce The essential work and cancer toolkit, which contains comprehensive advice for people with cancer, their carers and employers. Booklet orderline: Macmillan benefits advisers work from cancer information centres, CAB offices or other accessible offices throughout the country. Find a local adviser at: MacBenefitsAdvisers.aspx Money Advice Service Set up by the UK Government and funded by the Government and the private sector, this independent organisation gives free advice to enable people to make the right decisions about money management, financial products and debt National Debtline Run by the Money Advice Trust, the National Debtline provides free, confidential and independent advice on how to deal with debt problems Payplan Payplan provides free debt management plans (DMPs), Individual Voluntary Arrangements (IVAs) and debt advice. Their service is effectively paid for by the credit industry itself, not by the user. They are used by CABs, the Police Federation and other nationally recognised national organisations The Pensions Advisory Service An independent, not-for-profit organisation that provides free information, advice and guidance on the whole spectrum of company, personal and stakeholder schemes. They also help you understand how State Pension issues interact with other pensions you may have TUC (Trades Union Congress) Provides advice and information on employment issues and local union details. Pay and Work Rights Helpline: /14

14 Turn2us A charitable service which helps people access the money available to them through welfare benefits, grants and other help. Their website has an online entitlement calculator and a search engine for charitable grants. Helpline: The turn2us site also provides a benefits changes timetable: information resources/benefits/news_and_changes/benefit_changes.aspx?page=16619 How we can help you We provide: a free helpline providing information and emotional support (9am 6pm Mondays Thursdays; 9am 5pm Fridays) or information@lymphomas.org.uk free information sheets and booklets about lymphoma a website with forums and a chatroom the opportunity to be put in touch with others affected by lymphoma through our buddy scheme a nationwide network of lymphoma support groups. How you can help us We continually strive to improve our information resources for people affected by lymphoma and we would be interested in any feedback you might have on this article. Please visit or publications@lymphomas.org.uk if you have any comments. Alternatively please phone our helpline on We make every effort to ensure that the information we provide is accurate but it should not be relied upon to reflect the current state of medical research, which is constantly changing. If you are concerned about your health, you should consult your doctor. The Lymphoma Association cannot accept liability for any loss or damage resulting from any inaccuracy in this information or third party information such as information on websites which we link to. Please see our website ( for more information about how we produce our information. Lymphoma Association PO Box 386, Aylesbury, Bucks, HP20 2GA Registered charity no Produced Next revision due /14