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Blood cancer: money and work

Your rights at work and financial support during the coronavirus pandemic

What you need to know

Whether you’re living with or after leukaemia, lymphoma, myeloma or any other blood cancer:

  1. Financial support is available – This web page tells you what help you can get during the coronavirus pandemic, benefits you may be entitled to, and how to reduce health-related costs.
  2. You’ve got rights at work – The law is on your side. In England, Scotland and Wales you’re protected from discrimination by The Equality Act, and in Northern Ireland, by the Disability Discrimination Act.
  3. Whatever stage you’re at, you’re protected – If you’re in remission, on watch and wait, if you have a chronic blood cancer, or an MPN or MDS, you are still entitled to protection and support.
  4. Don't go out to work unless your workplace is COVID-safe – You should still be supported to work from home wherever possible. If this isn't possible, talk to your employer about ways to protect your health at work. There is advice about how to do this below.

We also have information about how to get help with food and medicine deliveries.

We also have information on coping emotionally with the pandemic and worries about going out.

If you don't want to return to work because of the risk to your health

Working from home - even if you don't normally

As someone who’s been diagnosed with cancer, you have rights at work. You are protected by The Equality Act (in England, Scotland and Wales) and the Disability Discrimination Act (in Northern Ireland).

This means your employer legally has to consider ‘reasonable adjustments’ to help you stay in work. Reasonable adjustments could include allowing you to work from home to protect your health, even if this means changing your role or providing equipment to enable you to do this.

Talk to your employer about this, telling them you're keen to continue working, but have been advised by your healthcare team that you're at high risk. Things that could help:

  • Talk to your healthcare team and get their advice about working from home in writing if you can
  • Talk to your HR department or Union if you have one
  • Think of changes to your duties that you could suggest to your employer, that would allow you to work from home
  • Share our fact sheet, If your employee or colleague has blood cancer with your employer
  • Contact ACAS for expert advice

For help talking to your employer about reasonable adjustments, there are tips and resources below.

Adjusting your role or hours to reduce risk

As someone who's had cancer, you are protected by disability law in the UK. This means your employer must consider any reasonable adjustments to support you at work.

If you can't work from home full-time, are there some duties you can perform from home, to reduce how much you need to go out to work? Adjusting your role so that some of it can be done from home, to reduce the number of days you go in, is an example of a 'reasonable adjustment'. Ask your employer about this if you can think of some options.

Another reasonable adjustment could be changing your hours, so you can travel to and from work at quieter times.

Or, are there changes to your duties at work that would reduce your contact with other people? For example, could you work more in a back room/office or do more admin, rather than being public-facing?

Using the Job Support Scheme

When the furlough scheme ends at the end of October, it will be replaced by the Job Support Scheme. The scheme will open on 1 November 2020 and run for 6 months. The scheme allows someone who is working at least one third of their hours, to receive up to two thirds of their pay. This aims to help people keep their jobs in businesses facing decreased demand. If your employer is using this scheme, could you ask to be put on it, so you only need to work a third of your hours? This would result in a loss of income however. Find out more about the Job Support Scheme.

Going onto sick pay

If your GP or healthcare team believe you're not able to work, because of your diagnosis or any other illness, they can give you a fit note in the normal way. This gives you access to your company's sick leave policy and pay, or Statutory Sick Pay.

Returning to work after shielding

Government guidance in all four countries of the UK says that employers should still make every effort to allow you to work from home.

You should only go to work if:

  • you cannot work from home, and
  • your workplace is COVID-safe.

If you need to return to work, you have rights and your employer has a legal duty to keep you safe.

There are guidelines for employers about ensuring the workplaces are safe in England, Scotland, Wales and Northern Ireland.

You can ask your employer for a risk assessment before you return. You can also get your healthcare team's advice in writing and show this to your employer.

Cancer is classed as a disability under the Equality Act (in England, Scotland and Wales) and the Disability Discrimination Act (in Northern Ireland). This means that employers must also consider reasonable adjustments to help you do your job whilst protecting your health.

If you have blood cancer or are living with the lasting impact of blood cancer, you could ask your employer to make some reasonable adjustments to keep you as safe as possible at work. For example, they could adjust your duties or hours to make them lower risk - see above.

For help talking to your employer, there are tips and resources below.

If shielding is re-started

As of 14 October 2020, there are no areas in the UK where shielding is in place.

There is a possibility that some areas will go back into shielding in the future, if infection rates become very high. In this case, we understand that people shielding would be eligible for Statutory Sick Pay or Employment Support Allowance.

We are calling on the government to rethink this offer of support, which for many people would be a significant drop in income. At the moment though, there is no shielding advice in place in the UK.

If you're self-employed

Following on from the Self-Employment Income Support Scheme (deadline for applications was 19 October), the government is launching a Self-Employment Income Support Scheme grant extension. The scheme is open from 1 November 2020. This is to continue supporting businesses that have been adversely impacted by coronavirus. You may be eligible if your business has been impacted because you were shielding.

To be eligible for the grant extension, you must currently be eligible for the the Self-Employment Income Support Scheme (although you do not have to have claimed the previous grants).

The grant extension will provide two grants and will last for six months, from November 2020 to April 2021. Grants will be paid in two lump sum instalments each covering a three-month period.

Find out more about the grants and claiming: Self-Employment Income Support Scheme grant extension.

Find out about other financial support for self-employed people: Other help you can get.

What does COVID-safe mean?

Employers are required by law to protect their employees from harm.

The government guidelines say that if you cannot work from home, you should only go to work if your workplace is COVID-safe.

COVID-safe means different things depending on the type of business, but some examples are:

  • Having a risk assessment done before staff return
  • Ensuring staff can remain 2 metres apart wherever possible
  • Implementing one-way systems and using floor markings and signs to keep people apart
  • Helping employees follow good hand hygiene by providing hand sanitiser
  • Regularly disinfecting objects and surfaces that people touch

If it’s not possible to keep staff 2 metres apart, your employer should do everything possible to reduce the risk of transmission, such as:

  • Considering whether activities requiring close contact could be paused if they aren’t vital to the business
  • Keeping time spent in close contact to a minimum
  • Using screens to separate people
  • Working back-to-back or side-to-side rather than facing each other
  • Staggering arrival and departure times
  • Reducing the number of people that each person has contact with, by using fixed teams or keeping the same partners together

You can read the government’s full advice about working safely during coronavirus in England, Scotland, Wales and Northern Ireland for more examples of protective measures. There is also specific guidance for different industries.

If you have been diagnosed with blood cancer, you need to be extra careful to avoid catching coronavirus. You should not be asked to return to a workplace that is not COVID-safe.

As someone who’s had cancer, you are also protected by the law. Your employer legally has to consider ‘reasonable adjustments’ to support you at work. This could include:

  • Letting you travel to and from work at quieter times
  • Changing your role or duties to reduce contact with other people at work

You should ask for any changes that could protect you at work. For help talking to your employer, there are tips and resources below.

If you are concerned your workplace isn't COVID-safe

Talk to your employer first to explain what the risks are to you. You may be able to find adjustments you can make to allow you to work safely. You could ask for a risk assessment. If your employer won't help with your concerns, get advice from ACAS (Helpline: 0300 123 1100).

If you're still being pressured to go to work, despite your healthcare team's advice that it is unsafe, you are protected by law against unfair treatment and dismissal due to a health condition. If your employer puts unreasonable pressure on you to attend work, or unreasonably disciplines you for not attending work, this may be unlawful discrimination. If you're concerned about this, seek advice from ACAS (Helpline: 0300 123 1100).

Choosing not to go to work

If you don’t go back to work, your employer doesn’t have to pay you. But there are things you might be able to agree with your employer:

  • Adjusting your role or hours to reduce risk - see above
  • Using some of your annual leave to take paid time off
  • Asking for unpaid leave so you can return to work a little later
  • Finding out if there are other types of leave you could take, like parental leave if you look after children

If you don’t want to return to work and are worried about your job or finances, contact ACAS (Helpline: 0300 123 1100).

Benefits you may be entitled to

Whether you’re currently in or out of work, if you’re on a low income, you may be able to claim other benefits like Universal Credit or Employment and Support Allowance (ESA), or Personal Independence Payment (PIP).

If your GP or healthcare team believe you're not able to work, because of your diagnosis or any other illness, they can give you a fit note in the normal way. This gives you access to your company's sick leave policy and pay, or Statutory Sick Pay.

To find out more about benefits you may be entitled to, ask your GP, clinical nurse specialist or doctor. You can also contact Citizens Advice on 0344 411 1444 or Macmillan Cancer Support on 0808 808 00 00.

If you claim Universal Credit, the rules around minimum income will be relaxed for the duration of the outbreak of coronavirus.

Other help

There are charities that offer grants to people with blood cancer:

If you're worried about the impact of coronavirus on your finances, speak to your landlord, bank and utility bill companies – many are offering support to their customers during this time.

Financial firms such as banks are required to prioritise vulnerable customers and should have services to support you at this time. There are also schemes set up to allow people to delay payments if coronavirus has impacted your cash flow.

Contact your local Citizens Advice to find out about benefits and other forms of support you may be eligible for.

If you're normally entitled in your contract to Statutory Sick Pay, and you're off sick or self-isolating due to coronavirus symptoms in your household, you should get sick pay from the first day of absence. If your employer needs proof, you can get a self-isolation note from the NHS.

If you're on a zero hours contract, and are off sick or self-isolating due to coronavirus symptoms in your household, you may still be entitled to sick pay if you have done some work for the company. Check your eligibility.

If you're a contractor, freelancer or similar (in gig-economy work), and are off sick or self-isolating due to coronavirus symptoms in your household, then speak to your current company – some are offering sick pay or compensation.

See the government advice for employees.

When the furlough scheme ends at the end of October, it will be replaced by the Job Support Scheme. The scheme will open on 1 November 2020 and run for 6 months.

The scheme allows someone who is working at least one third of their hours, to receive up to two thirds of their pay. This aims to help people keep their jobs in businesses facing decreased demand. Find out more about the Job Support Scheme.

The Job Support Scheme has now been expanded to provide support to businesses required to close due to coronavirus restrictions.

Reasonable adjustments and your employment rights

If your employer knows about your diagnosis, then legally they have to consider ‘reasonable adjustments’ to support you at work. This includes adjustments that protect your health, such as allowing you to work from home, or adjusting your duties or hours to help you with side effects such as fatigue.

You can ask for reasonable adjustments at any time, not just when you’re returning to work. It’s helpful to have regular catch-ups with your manager to check how things are going and see if you need any other changes.

Examples of reasonable adjustments include:

  • support to work from home as someone who's at high risk from coronavirus
  • a phased return to work (building up your hours gradually after being off sick)
  • taking time off for medical appointments or telephone counselling
  • taking more breaks – this is especially important if you’re working from home
  • limiting work that you find challenging as a result of your diagnosis
  • changing start or finish times
  • reducing your working hours.

Finding helpful adjustments

Step 1: Write down the specific things that make work more challenging (e.g. the hours or certain tasks).

Step 2: Think of a way to alter each thing (e.g. change hours or propose changes to your role).

Step 3: Talk to your employer as soon as you can about your ideas for reasonable adjustments. Show them your list or email them using the templates below

Talking to your employer

It's helpful to talk to you employer about how they can help you continue in your role. In fact, this is something you may need to keep coming back to, as the effects of blood cancer and its treatment change over time.

As coronavirus is likely to be with us for some time, it's likely that you'll be having conversations with your employer about lowering your risk of catching the virus. Here are some ways to start the conversation with your employer:

  • “As you know, I’ve been diagnosed with blood cancer. Blood cancer and its treatment affects the immune system. This means I need to be very careful to avoid coronavirus, as it could have serious consequences if I get it.”
  • “My doctor says I need to take extra care to avoid other people and work from home wherever possible.”
  • “Please can we talk about possible ways I could work from home to protect my health?”
  • “Are there any reasonable adjustments we could make to my role or duties during this time, to allow me to work from home?”
  • “Can we change my duties so I have the least amount of contact with other people?”
  • “Could we change my hours so I have less contact with people while travelling?”

You could show your employer this web page from the Health and Safety Executive about protecting vulnerable employees.

It might also help to give your employer this fact sheet about blood cancer, which also explains your rights at work:

If you’re not sure what to say to your manager, our email template could help:

For more advice about your rights and work, seek expert advice from ACAS (Helpline: 0300 123 1100) or Disability Rights UK.

Bianca at a public function with her partner

Bianca's story

Asking for help to work through chemo

Bianca's story

How to get help with benefits

Make sure you get the financial support you’re entitled to – it might be more money than you realise.

People with blood cancer who get benefits say that they can make a big difference and help to reduce money worries. There are people who can help you apply:

  • Ask your GP, clinical nurse specialist or doctor – They can be a great source of local information and might be able to help with applications.
  • Call a helpline – You can contact the Citizens Advice on 0344 411 1444. Macmillan Cancer Support also have specialist benefits advisers on 0808 808 00 00.
  • Family and friends – If you’re feeling overwhelmed, there’s no shame in asking for help. Could a friend or family member help you find out about benefits?

My mum found out about Personal Independence Payments (PIP) for me, and I received them even though I was working. That was a big help.

- Bianca, 35

Ways you could save money

  • Free parking at hospitals – Parking at NHS hospitals in Scotland and Wales is free. In England and Northern Ireland, many hospitals offer free parking to people with cancer, but it might not be well advertised. Ask your healthcare team if your hospital can help with this.
  • Free prescriptions – Prescriptions are free in Scotland, Wales and Northern Ireland. In England, prescriptions are free if your health problem is related to cancer. Ask your GP for an exemption certificate form.
  • Help with health costs – You may be able to get help with health costs. It takes just three minutes to check online.
  • Refunds for health-related travel – If you have a low income, or receive certain benefits, you may be able to get refunds for your travel costs to hospital. Speak to your healthcare team to find out more.
  • Help with bills – Talk to your suppliers about energy bills, council tax and mortgage payments. There is usually support available for people with cancer. Get advice from Citizens Advice (0344 411 1444).
  • Check your other entitlements – Could you draw on your income protection insurance, critical illness cover, or life insurance?
  • Help from charities – Many charities offer grants that you don’t have to pay back – check on Turn2Us.
Louise, in remission from blood cancer, spends time with her husband .jpg

Louise S's story

How I found the financial support I needed

Louise S's story

Boosting your confidence at work

It may feel like a struggle to keep working while you’re living with cancer – particularly during the current pandemic. Or you might have had time off and be finding the thought of going back daunting, especially if you’re returning to a different working environment like working from home. But there are things you can do to boost your self-esteem:

  • Know your rights – You’re protected by the law against discrimination and your employer should make reasonable adjustments (see above) to support you.
  • Access the help that’s available – Ask your work about training, special equipment or back-to-work support. Look into the access to work scheme, employability support, the National Career’s Service or ask about support from your trade union if you have one.
  • Look after yourself – Take care of your mind and emotions and read our tips on managing fatigue.

Rethinking whether to work

Some people decide to stop working after a cancer diagnosis. This is a big decision, and it’s important to get the right advice. Get the right information from the Money Advice Service, find a retirement advisor in your area, or call Macmillan Cancer Support (0808 808 00 00) to speak to a financial guide.

Whatever your situation, other people living with blood cancer say that changing their approach to work has made a positive difference. For example, some people try to get more balance. This could mean spending more time on your interests and with your family, or trying a new hobby, volunteering or studying.

If you’d like to return to work eventually, but aren’t able to do so now because you’ve been advised to shield, or are in a local area where shielding has been re-introduced, see the information near the top of this web page: 'If you don't want to go to work because you'e been advised against it' and 'If you can't work because of local shielding advice'.

After I stopped working, I wanted more to focus on, and found an introduction to counselling course. My family said I’d be great at it because they always talk to me about their problems!

- Joanna, 50

More tools and support

More employment help:

More financial help:

Work and money stress:

  • Work and money worries can add to the stress of living with blood cancer. Many workplaces have an employee assistance programme. This should still be available to you if you’re working from home or have been furloughed.
  • There are also things you can do yourself to cope with the emotional impact – read more about looking after your mind and emotions.

Janssen-Cilag Ltd has supported Blood Cancer UK with funding for the production of this web page and others within the ‘Living well’ section. It had no influence over the content.

Jacqueline, in remission from DLBCL, out walking with a friend

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