Most people will need to take time off after diagnosis to begin treatment. This is because treatments can have side effects that make you feel too ill to work. You may also have symptoms that make you feel too ill to work long term, especially if you have a chronic leukaemia. It is natural to wonder when you might be able to get back to “normal”, including returning to work. At the same time, you need to make sure you give yourself enough time to recover and not lengthen your recovery time with unnecessary stress. Always seek advice from professionals and other people you trust.
Working when you have leukaemia is possible, and it has been shown to make a positive difference to a cancer patient’s prognosis and emotional wellbeing, such as providing a distraction from symptoms. Other benefits to work include:
- Giving you a routine to follow
- Allowing you to maintain contact with friends
- Stable and predictable income
- Improved self esteem
However, continuing to work is a decision to be made between an individual and their healthcare team. No one should pressure you to make a certain decision or give you advice without giving you time to consider all options. If you choose not to work, you might consider other activities in the meantime, such as volunteering, internships or temping. These roles may allow you more flexibility for days off and avoid gaps in your CV.
Your decisions about work are likely to depend on many things:
- Type of leukaemia; especially whether it is chronic or acute
- Whether you are in active treatment
- Type of treatment and whether you are experiencing side effects
- Symptoms you are experiencing
- Whether you need to work for financial reasons
- Whether you have other practical support in place to help you (childcare, help at home when you tired etc.)
- How you feel about being away from work (e.g. missing the social aspect, causing you financial worries).
Being self-employed is a challenge, even when you are not unwell. You are responsible for every aspect of the business and this control is often the part that those who are self-employed find most rewarding, especially when you are not in control of your health. It may be advantageous to be self-employed when you are diagnosed with leukaemia, in that you alone can decide if and when you return to work and in what capacity. However, the lack of support can also bring additional concerns compared with someone who is employed. Common questions you might have include:
- How do I keep my business going?
- Can I keep working?
- Will I need to change anything about my business?
- Is there any financial help for me?
- Where can I go for advice?
This toolkit aims to address these and other questions to help you make decisions about both your business and your personal circumstances following a leukaemia diagnosis.
Personal decisions – Planning ahead
When self-employed, you are responsible for all aspects of your working life. While the immediate priority should be helping you recover, this means you may need to do extra planning soon after diagnosis. It is impossible to know every scenario, but it might be a good idea to take some time to go over the common ones and plan what you would do if they did happen, as well as if things turned out differently. For example, one scenario might be that you might feel better within 6 months of treatment and return to work. List all the potential options. In this case, you might feel well enough to dive back in at full hours, but you might only feel well enough to do certain hours or you might not want to go back to work at all. Then highlight your preferred option, considering what you will do in the meantime and who you will ask for advice over time.
Your healthcare team may not be able to give you exact dates but should be able to give you advice on expected or usual timescales. They are the people who will know best for your specific situation and leukaemia type. For example, acute leukaemia may mean hospital stays in the short term and severe side effects from treatment. Chronic leukaemia, on the other hand, often allows you to stay at home or even have no treatment at all, but you may have good days and bad days. To help you make the decisions and plan ahead, make sure you ask as many questions as possible. These could include:
- how long treatment takes
- whether you will be in hospital, and for how long
- whether you can do daily activities, such as driving
- whether there are alternative treatment ideas, such as ones with fewer side effects or being able to have treatment at home.
The more information you have, the better prepared you will feel.
Personal decisions – telling others
Telling others that you have leukaemia can be a very difficult step. You should certainly tell employees, so they know if there will be changes to their own circumstances. Consider telling customers, suppliers or contractors if there is any risk that you will not be able to fulfil a contract. To help, you could plan the conversations in advance, considering what each type of person might ask, how much you want to tell them and how much they need to know to maintain the relationship. Consider negative outcomes but try not to focus on these alone; it is likely most people will respond sympathetically, especially if you can address their immediate concerns. Choose a time when you both have enough time to ask all the appropriate questions and follow up on queries you can’t answer as soon as possible. You may want to delegate this task to others, for example in an emergency, but consider how this looks to others and also the stress this may cause the person you have asked; for example, if they cannot answer questions from suppliers.
Personal decisions – Supporting yourself
Being diagnosed with leukaemia, of any type, is a shock, both mentally and physically. You are likely to need some time off at some stage, usually during treatment periods. In this section, we give advice on where to get support for yourself as an individual, financially and practically.
People who are self-employed do not have all the support that might come with employment, such as a knowledgeable human resources department, or financial advantages like Statutory Sick Pay. However, if your income drops due to a leukaemia diagnosis, you are entitled to state benefits, just as anyone else would be. These include Housing Benefit, Mortgage Interest Support, Council Tax Support, Personal Independence Payment and Employment Support Allowance. Some of these are included in the new Universal Credit system. Some are also available whilst you still work, although they have special rules for those that are self-employed. Leukaemia Care has a toolkit, entitled “Employment rights 4: State benefits”, that will give an overview about who is eligible for each benefit type. It is worth noting that if you are a limited company, your company is legally separate from yourself; i.e. while you started the business, you are also an employee. Therefore, you must pay yourself Statutory Sick Pay from the business finances, as you would for any other ill employee, before you will be entitled to benefits. The Citizens Advice website has details about how being self-employed effects your entitlement to benefits: https://www.citizensadvice.org.uk/benefits/universal-credit/claiming/self-employed/.
When you became self-employed, or even before, you may have taken out life insurance, critical illness cover or an income protection policy. Check your policy documents to see whether you are entitled to a pay out from these; some policies will pay out, even if you are likely to recover fully in the future; the long term nature of chronic leukaemia’s is not well understood in the insurance industry. These policies should allow you and your loved ones to be free of some debts, such as a mortgage, for enough time for you to recover or otherwise become settled financially.
You may also need non-financial support to return to work, if this is what you choose to do. An employer would be obliged to provide reasonable adjustments to a workplace, under legislation such as the Equality Act 2010, to enable a cancer patient to return to work. Whilst you are not forced to do this when self-employed, you should consider doing so; reasonable adjustments are designed to balance the health of the individual with the needs of the business. For example, do not put yourself under pressure to return to work immediately; consider implementing a plan of increasing your workload over a period of weeks or months and monitor how you feel so you can change the plan as necessary. If you need specific support, such as transport costs or special equipment, the Access to Work scheme run by the government may be able to help. They also can give advice on getting yourself back to work. You can apply online if you are in England, Wales or Scotland, or enquire at a Jobcentre if you are in Northern Ireland.
Business decisions – Finance
Unfortunately, there is no specific financial help offered to businesses that are struggling due to ill health. There are emergency grants offered to members of specific trades, such as accountants and builders, but these vary in what they can offer money for and to whom. These may insist that the money be only used for yourself as an individual. You may be covered by business insurance policies, such as key person insurance, that will allow your business to stay afloat or to close with no negative impact on you.
The first step would be to speak to a financial adviser; they are best placed to look at whether your business can survive a period of reduced income and advise you on closing the business, if necessary. You may not be able to grow the business as you imagined, but there may be ways you can keep it ticking over while you recover. Things are more complicated when you have employees, as they are still entitled to be paid unless you let them go. You could ask them to consider shorter hours for a short time, but they might not have to do so if changing hours was not mentioned in their original contract. It is important to take specific advice on this area.
There are also steps you could take to help keep your reputation intact. Speak to your clients and suppliers, especially regular ones, or ask someone you trust to explain on your behalf. You may not feel like sharing the details, but just letting them know you are too unwell to work should be enough to put their minds at rest. You may wish to offer a discount to those who owe you for them paying early, which will help you plan for the time ahead better.
You will also need to inform your creditors too, as they will start action against you if you stop paying debts without notice. You may be able to negotiate a break in payments, reduced interest or similar help, for example on a bank loan or with your rent payments, but you need to at least let the relevant parties know there is an issue in order for them to be able to help. You might also consider reducing other outgoings, such as stock levels or vehicle rent, but consider how much it would cost to reinstate such things later before you remove them.
Unbiased (https://www.unbiased.co.uk/enquiry/find-suitable-adviser)has a tool that finds the best financial adviser for your specific needs in your local area. You can also search or browse for specific company. They also only list advisers that can recommend products from the whole market.
Business decisions – practical help
As well as your finances, there are some other simple ideas that could keep your business running smoothly while you are away. Identify the skills you bring to your business; this will allow you to delegate where you can, leaving your time to be spent on the things only you are able to do. It will also keep you motivated, if you are still involved but spared the most time-consuming or least enjoyable tasks whilst you are unwell. Whether you can employ extra people to cover work will depend on the financial situation of your business, but it may well be worth doing to keep the business open. You could hire someone ad hoc, to fill days where you are busy with treatment or recovering, or to cover whole tasks, or to cover all the work if needed.
Consider asking your family and friends to take on a little work each for you, such as admin or taking telephone calls; loved ones are usually waiting to be asked to help. Make sure you are upfront about what a task entails so they only take on what they can handle, in terms of time and skills required. Alternatively, you could ask them to help you at home, for example with cooking or childcare, so you can put all your remaining energy into the business.
Business decisions – Closing the business
Closing your business is a personal and difficult decision, whether you choose to close the business, or you must do so for financial reasons. This is another instance where you will need a financial adviser, so you can make the correct decisions, such as whether to close or transfer ownership to someone else. The government has provided a checklist for those looking to close a business: https://www.gov.uk/selling-your-business-your-responsibilities. There are several key areas you will need to consider:
- Financial – collect all money owed to you as soon as possible and before you tell them you are closing, as debts are much harder to recover after you close. You will also need to tell all the people you owe money to or pay regularly, e.g. suppliers, the bank, landlord. Return money taken for goods or services not provided. Consider selling stock, if applicable, to help you pay off debts. You should speak to a financial advisor if you are concerned about your ability to pay any debts or close the business finances.
- Staff – If you employ anyone else, they must be informed of when and why the business closing and you must talk about redundancy terms with them. You must also make sure you don’t breach their rights under employment law.
- Tax – your financial adviser should know the rules around tax, but ensure you let HMRC know that you are no longer going to be self-employed and complete your final tax return on time. Selling the business could also cost you Capital Gains Tax, but there are some discounts to this, including Entrepreneurs Relief.
- National Insurance – When self-employed, you pay national insurance contributions direct to HMRC. Call their helpline to make sure you cancel these payments from the time you close the business.
- Limited companies – If you own a limited company, rather than being a sole trader or in a business partnership, how you close your business will depend on whether your company can pay off its debts (i.e. is solvent) or not. It is also likely to take longer to complete the process. Your financial adviser will tell you how to complete this process effectively. You can find more information on limited companies here: https://www.gov.uk/closing-a-limited-company.
Being self-employed means your income, and sometimes your assets like your house, are linked to the success of your business. If you are worried about personal debt resulting from a leukaemia diagnosis while self-employed, please get in touch with an organisation that can help as soon as possible. More can be done to help the earlier you get in touch. Business Debtline offers advice for businesses in debt: https://www.businessdebtline.org/and Step Change provides advice for individuals: https://www.stepchange.org/.
Below are some websites where you can get further information:
- https://www.macmillan.org.uk/information-and-support/organising/work-and-cancer/if-youre-self-employed#161442– Macmillan offer general advice for those self-employed when they are diagnosed with cancer. They also have a helpline where you can speak to trained financial advisers, as well as get emotional support.
- https://grants-search.turn2us.org.uk/– Search for emergency grants in your area or for people in your profession
This information was correct as of October 2018 when it was first published. If you need any further support with the issues discussed in this article, please contact the Leukaemia Care team on 01905 755977 or email email@example.com