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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

Last updated: 22 December 2020

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.

Should I be going to work?

Last updated: 5 January 2021

  • Everyone clinically extremely vulnerable should still be supported to work from home wherever possible, even if this involves changing your role. You can also ask to be furloughed based on your vulnerability. See below for help talking to your employer about these options.
  • Nobody with blood cancer should be going to work if their workplace isn't COVID-safe, wherever they live. If you are worried about your health or safety at work, read on for more about your options.
  • Across England, clinically extremely vulnerable people are being told to shield and not to go out to work. You will be sent a new letter about this.
  • In most of Scotland (except some islands in Level 3), clinically extremely vulnerable people are being told to shield and not to go out to work. You will be sent a 'fit note' by the Chief Medical Officer to show your employer.
  • Across Wales, the whole country is in Alert level 4, and this means clinically extremely vulnerable people are being told to shield and not go to work. You will be sent a new letter about this.
  • Across Northern Ireland, from 26 December, clinically extremely vulnerable people who can't work from home are advised not to attend the workplace. You will be sent a new letter about this.

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.

Fact sheet to share with your employer

When talking to your employer about coronavirus and reducing your risk, share this free fact sheet with them. It explains blood cancer, the risk of coronavirus, and your rights at work.

Letter to share with your GP

Being on the shielding list and getting relevant letters from the government is important. These letters act as proof for your employer that you are clinically extremely vulnerable (and can't go to work in very high risk areas). Use this document from Blood Cancer UK if you need help asking your GP for a letter:

Should I be going to work, and what financial support is available if not?

Last updated: 5 January 2021

The first things to know, wherever you live, are:

  • Everyone clinically extremely vulnerable should still be supported to work from home wherever possible, even if this involves changing your role.
  • You can also ask to be furloughed based on your vulnerability.
  • Nobody with blood cancer should be going to work if their workplace isn't COVID-safe.

If you cannot work from home or be furloughed, and you are clinically extremely vulnerable, the advice about whether to attend work varies around the UK, but most clinically extremely vulnerable people are currently advised not to go out to work:

  • In England (from 4 January 2021), the country is in lockdown, and clinically extremely vulnerable people are being told to shield and not to go out to work. You should receive a letter and email explaining this, which you can show your employer. You can ask to be furloughed by your employer due to your vulnerability. If you can't be furloughed, your letter/email will also provide proof for you to access your company's sick pay policy, Statutory Sick Pay (SSP), Employment Support Allowance (ESA), Universal Credit or other benefits.
  • In Scotland (from 5 January 2021), most of the country is in lockdown, except for some islands that remain in Level 3. In lockdown, clinically extremely vulnerable people are being told to shield and not to go out to work. You will be sent a 'fit note' by the Chief Medical Officer to show your employer. This will be a two-week fit note to protect you, whilst you get your own fit note from your GP or consultant. You can ask to be furloughed by your employer due to your vulnerability. If you can't be furloughed, your fit note will also provide proof that you should be off work and help you access your company's sick pay policy, Statutory Sick Pay (SSP), Employment Support Allowance (ESA), Universal Credit or other benefits.
  • In Wales, the whole country is in Alert level 4, and this means clinically extremely vulnerable people are being told to shield and not go to work. You will be sent a new letter about this. You can ask to be furloughed by your employer due to your vulnerability. If you can't be furloughed, your letter will also provide proof for you to access your company's sick pay policy, Statutory Sick Pay (SSP), Employment Support Allowance (ESA), Universal Credit or other benefits.
  • In Northern Ireland, the whole country is under national restrictions from 26 December, and clinically extremely vulnerable people who can't work from home are advised not to attend the workplace. You will be sent a new letter about this. You can ask to be furloughed by your employer due to your vulnerability. If you can't be furloughed, your letter will also provide proof for you to access your company's sick pay policy, Statutory Sick Pay (SSP), Employment Support Allowance (ESA), Universal Credit or other benefits.

Furlough

The furlough scheme (Coronavirus Job Retention Scheme) has been extended until April across the UK. In this extension, people who have not been furloughed before can be furloughed for the first time, and employers who haven't used the scheme before can use it for the first time.

You can ask your employer about being furloughed due to your vulnerability. Ultimately, this is your employer's decision, but the government and the law is clear that employers should support their vulnerable employees and protect their health and safety. You may find it helpful to send your employer our free fact sheet 'If your employee or colleague has blood cancer'.

In this extension, people who have not been furloughed before can be furloughed for the first time, and employers who haven't used the scheme before can use it for the first time.

If you are worried about going to work because of the risk at work, or because of the risk of travelling, remember that you do have rights as a person with cancer. This means your employer has to consider ‘reasonable adjustments’ to help you stay in work. This could include changing your start/finish times so you can travel to work during quieter times, changing your duties so you have less contact with other people, or allowing you to work from home to protect your health, even if this means changing your role or providing equipment.

Read more about your rights at work, what COVID-safe means, tips for talking to your employer, and where to get expert advice below.

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

Last updated: 22 December

In some parts of the UK (outlined above), clinically extremely vulnerable people are advised not to go out to work. See above for what financial support is available in this situation.

For anyone who is still going out to work, below are some options to consider.

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.

Even if your workplace is 'COVID-safe', you might still feel it's too risky for you. Or it might be the travelling to work that's more of a problem if you have to get public transport. Both of these things still mean that you don't feel safe coming to work and are reasonable concerns to raise when asking for adjustments.

COVID-safe for someone with blood cancer might mean something slightly different than COVID-safe for someone healthy.

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
  • Contact ACAS for expert advice
  • Share our fact sheet, 'If your employee or colleague has blood cancer' with your employer

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. Even if your workplace is COVID-safe, you might still feel it's too risky for you. Or it might not be possible for you to travel to work safely.

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 Retention Scheme (furlough)

The furlough scheme (Coronavirus Job Retention Scheme) has been extended until the end of April across the UK. Could you ask your employer about being furloughed? In this extension, people who have not been furloughed before can be furloughed for the first time, and employers who haven't used the scheme before can use it for the first time.

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. Even if your workplace is COVID-safe, you or your doctor might still feel it's not safe enough considering how vulnerable you are. Or you might not be able to travel safely to work. In either case, talk to your GP if you don't think you should be going to work.

Returning to work after shielding

Last updated: 22 December 2020

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
  • your workplace is COVID-safe, and
  • you do not live in a part of the UK where clinically extremely vulnerable people are advised not to go to work (outlined above)

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 get your healthcare team's advice in writing and show this to your employer.

You can also ask your employer for a risk assessment before you return:

  • Workplace covid risk assessments in England
  • Workplace covid risk assessments in Scotland
  • Workplace covid risk assessments in Wales
  • Workplace covid risk assessments in Northern Ireland

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. Even if your workplace is COVID-safe, you or your doctor might still feel it's still not safe enough considering how vulnerable you are, so you might ask for extra measure to be put in place.

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

If you're self-employed

The Self-Employment Income Support Scheme has been extended. This is to support businesses that continue to be adversely impacted by coronavirus. Find out whether you are eligible for a grant. You may be eligible if your business has been impacted because you were shielding.

There is also other financial support available 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

For people with blood cancer, who are extremely vulnerable to coronavirus, extra measures may be needed on top of the COVID-safe ones. Talk to your healthcare team and get their advice.

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 company sick pay or Statutory Sick Pay, and you're off sick or self-isolating according to national guidance, 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, 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, then speak to your current company – some are offering sick pay or compensation.

See the government advice for employees.

The furlough scheme (Coronavirus Job Retention Scheme) has been extended until the end of April across the UK. In this extension, people who have not been furloughed before can be furloughed for the first time, and employers who haven't used the scheme before can use it for the first time.

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.

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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