Returning to work

Introduction

For many people, work can help them get back into their everyday life and give them different focus away from the medical world of a transplant.

But returning to work isn’t always straightforward. After a transplant, you’ll be recovering physically and emotionally from major treatment. You may need to make adjustments to the way you work, and take things gradually. For some people, going back to work isn’t possible.

This information will help you prepare for and manage work after a transplant. It might also be useful if you’re a carer, family member or supporter. It's also available as a free booklet: Going back to work after your stem cell transplant.

You can use this booklet alongside our Work and stem cell transplant: Information for employers booklet, which you can give to your line manager, employer or HR department.

Anthony Nolan works in partnership with Working To Wellbeing to help people stay at work or return to work after a stem cell transplant. To find out more, call us on 0303 303 0303 or email us: patientinfo@anthonynolan.org

Returning to work was not easy and I vastly underestimated how tough, emotionally, it would be. But I felt so much better for returning.
Simon, who had a stem cell transplant to treat aplastic anaemia

Your Employment Rights

Under equality law in the UK, your employer has legal responsibilities to support you at work and cannot discriminate against you or treat you unfairly.

What are my legal rights?

Under the Equality Act 2010 (England, Scotland and Wales) and the Disability Discrimination Act 1995 (Northern Ireland), you’re classed as having a disability if you have a blood disorder or cancer.

This includes if you had a transplant in the past – even as a child – or experience long-term side effects, such as chronic graft versus host disease (GvHD) or fatigue.

Because of this, your employer is legally required:

to support you to return to work after your transplant
to make reasonable adjustments to your role
to provide an alternative role if your role can’t be adapted
not to discriminate against you, or treat you unfairly, because of your health.

Reasonable adjustments

Reasonable adjustments are adaptations to your job that make it possible for you to work while managing a disability.

These could be:

time off for hospital stays and appointments
doing lighter or different duties
working part-time or flexible hours
working from home
a phased return (slowly building up your hours and responsibilities as you recover)
practical changes to your workspace, like a more comfortable chair or a workspace away from bright lights
more regular breaks.

The type of reasonable adjustments available to you will depend on what you do and where you work. You can find out more in Macmillan Cancer Support’s Guide to Reasonable Adjustments.

Discrimination and unfair treatment

If you feel like you’ve been discriminated against or treated unfairly, there are steps you can take:

Discuss the problem with your manager or HR department.
Consider starting an official ‘grievance’ process.
Make a disability discrimination claim against your employer.

It’s completely up to you if and when you want to take these steps. Make sure you get expert advice and support.

An independent mediator may also help (see Acas), or a trade union rep if you are a member.

What if I'm self-employed?

You may not have the same legal rights if you’re self-employed. If you have a contract, you might have some legal protection against discrimination.

However, if you run your own business, you might not be protected if a customer or client discriminates against you or treats you unfairly.

Information and advice

For more information and advice, see the Equality and Human Rights Commission, Equality Advisory and Support Service or Acas. You can also call Macmillan’s Work Support Service via their helpline: 0808 808 00 00.

Before Your Transplant

Before your transplant, you’ll need to make practical arrangements with your employer and start looking into financial support.

Telling your employer

Most employers try to be helpful. Telling your employer about your transplant early will help them work out how to support you, before and after your transplant.

Once you’ve told your employer, they have a legal responsibility to support you. However, there are no rules about when and how you tell your employer about your transplant and ultimately, it’s up to you.

If you’re worried about telling them, you can ask someone to come with you, like a family member, work colleague or trade union representative.

It’s a good idea to take notes at your meetings and ask for a copy of any notes your manager makes. You can get more information on the Macmillan Cancer Support website. You might also find it helpful to give them our Work and stem cell transplant: Information for employers booklet.

Telling clients if you’re self-employed

If you’re self-employed, you only have to tell your clients if it’s written in a contract. But, out of courtesy, you may want to tell them that you won’t be working for a while.

Planning for time off work

Recovering from a transplant can mean taking a significant period off work – often six months to a year, but sometimes more. Some people are never able to return to work in the same way as before.

Before your transplant, you should have a meeting with your employer to discuss how much time you’ll need off. If this doesn’t happen, you can ask your manager or HR department to arrange one.

Your transplant team will be able to give you information about how long you might need off. This may change as your recovery progresses.

For more information, read our leaflets Essential facts for transplant patients and Essential facts for transplant recovery.

Financial planning

Taking a long period off work can raise questions about money and how you will support yourself and any dependents financially.

It might be helpful to think about these questions:

Am I entitled to sick pay?
How long will my sick pay last?
How much is sick pay compared to my usual wage (e.g. full/half pay)?
What benefits will I be entitled to if my sick pay runs out?
Do I have any insurance I could claim?
What will I do if I can’t return to my current role or hours?
What financial support can I claim if I can’t return to work?
Am I eligible for a pension or early retirement if I want to stop work?
How much financial support will I get if I can’t work, and what impact will that have?
How will I manage my work or business if I’m self-employed?

Top Tips: Before your transplant

Talk to your employer. It might be helpful to give them our Work and stem cell transplant: Information for employers booklet.
Talk to your transplant team about how much time you’ll need off and arrange a planning meeting with your employer.
Think about how you’ll be affected financially and look into options for support.
Decide how you’ll keep in touch with your employer. There may be rules you need to follow to be eligible for sick pay.
See if a family member, friend or professional can help with talking to your employer or getting advice if this seems overwhelming.
If you’re a carer, find out if you’re entitled to leave or financial support.

I had my transplant at 62 and my pension provider agreed to pay me my full pension as if I had worked till 65. I didn't think I stood the slightest chance of it being approved and nearly didn't bother to ask. If I hadn't it would have cost me a reduction in my pension.
Martin, who had a stem cell transplant to treat MDS

Benefits and financial support

Financial support is available if you’re off work, are working on a low income or can no longer work because of your health. What you’re eligible for will depend on your circumstances – make sure you get advice.

These organisations can give you personalised information, advice and practical support to help you apply:

Sick Pay

Statutory Sick Pay (SSP)

If you’re an employee and earn over £120 a week on average, you’re eligible for Statutory Sick Pay (SSP). This includes agency, casual and part-time workers, but not the self-employed.

You can get Statutory Sick Pay for up to 28 weeks (7 months). If you’re off work longer than this, or you’re not eligible for SSP, you may be able to claim benefits.

Company sick pay

Some employers provide company (or contractual) sick pay. Your contract or staff handbook should say how much pay you’re eligible for and for how long, or you can ask your employer.

Holiday pay

You’re still eligible for holiday pay while you’re off sick. Some employers allow you to use your holiday pay if your sick pay runs out or is reduced.

Benefits

Employment and Support Allowance (ESA)

You can apply for Employment and Support Allowance (ESA) if you have a health condition that affects how much you can work.

You can apply if you’re working, self-employed or currently out of work.

The application process can take up to three months, so make sure you leave plenty of time, particularly if you need your ESA to cover you after your Statutory Sick Pay runs out.

Universal Credit

You can apply for Universal Credit if you’re working on a low income, or out of work. You can also apply if you’re self-employed.

In some cases, you can claim Universal Credit alongside ESA. It usually takes five weeks or more from applying to receive your first payment.

Other benefits

Depending on your situation, you may also be able to apply for:

Personal Independence Payment (PIP)
Disability Living Allowance (DLA)
Attendance Allowance
Disability Premiums.

Carer’s allowance

If you care for someone for 35 hours a week or more, and they get benefits relating to their disability, you could be eligible for Carer’s Allowance.

Carer’s Allowance can affect other benefits you get, as well as the benefits of the person you’re caring for, so check this before you claim.

Other types of financial support

Access to Work grant – If you need practical support to stay in work, you may be eligible for an Access to Work grant.
Anthony Nolan Grant – We offer grants to people affected by transplant who have limited savings. Visit anthonynolan/grants
Other grants – Young Lives vs Cancer and other organisations also offer grants. Go to the Young Lives vs Cancer or Turn2us websites.
Free prescriptions – You can get free prescriptions if you’re undergoing treatment for cancer. Ask your doctor for a medical exemption form.
Council Tax reduction – If you’re on a low income, you may be able to apply for a Council Tax reduction in England, Wales or Scotland, or Housing Benefit and Rate Relief, or Rate Rebate in Northern Ireland.
Mortgage breaks and insurance – Your mortgage company may be able to reduce your payments or give you a mortgage break. If you have mortgage payment protection insurance (MPPI), you can use this to cover your payments.
Private insurance – If you have house insurance, health insurance or life assurance, you may be able to claim. Your workplace may also offer income protection insurance or critical illness insurance as part of their employee benefits. Check with your employer or insurance provider.
Pension – If you have a pension, you may be able to claim it if you have to stop working.

For more information, see our Help with your finances section.

Top tips: Benefits and financial support

Get advice from a qualified advisor, so you know what you’re entitled to.
Plan ahead. The application process can take time and it can take a while for benefits to come through. Allow three months to apply for ESA.
Get help applying. You may have a welfare adviser or social worker, or contact one of the organisations above.
You can appeal against a decision about your benefits if you feel it’s not right.

Appealing a decision

If you’re unhappy with a decision about your benefits, you can challenge it. You will need to follow the correct process. For more information, contact Citizens Advice, MoneyHelper, Gov.uk or Turn2us.

My advice is to return to work only when you feel both physically and emotionally ready.
Simon, who had a stem cell transplant to treat aplastic anaemia

Managing side effects

After a stem cell transplant, most people will have to manage some side effects as they return to work, or in the longer term.

Infections

Your immune system will be recovering for up to 18 months after your transplant. During this time, you will be more prone to picking up coughs, colds and other illnesses, and may take longer to recover than usual.

This risk lasts longer if you’re taking medication to suppress your immune system because of chronic graft versus host disease (GvHD).

You may need to think about how to reduce the amount of contact you have with people at work, particularly if you work in a public-facing role. This could mean working from home or avoiding commutes on busy public transport.

In addition to this, your employer is required to follow government guidance on making your workplace safe in the event of an epidemic, such as coronavirus (COVID-19).

Read our Dealing with infections section for more information.

Fatigue

Fatigue is a common problem after a stem cell transplant. For some people it’s a short-term consequence of treatment but for others, it can last for years.

Managing fatigue at work can be challenging, but there are techniques that can help. You may be able to go back on part-time hours to start with, take more breaks or change your work hours so you can work when you have most energy.

Read our Managing fatigue section for more ideas.

Memory and concentration

Some people have problems with their memory and concentration after a transplant. Often these problems get better after a year or so, but some people find they last for longer.

For practical tips to help you manage memory and concentration problems, see our Memory and concentration section.

Emotional wellbeing

Most people experience feelings of worry, uncertainty and low mood at some point during a transplant. You may find this affects your motivation and ability to work.

For help with managing this, talk to your GP or transplant team, call our helpline on 0303 303 0303 or email us at patientinfo@anthonynolan.org. You may also find our Telephone Emotional Support Service useful.

You can also read our Recovery section.

Graft versus host disease (GvHD)

When you have a stem cell transplant, your growing immune system may harm some of the cells in your own body because it sees them as ‘different’. This is called graft versus host disease (GvHD).

Generally GvHD is mild, but for some people it can be more serious and can cause symptoms that can affect your work. To find out more, read our GvHD section.

Other side effects

Your skin, joints, muscles, bones and eyesight can also be affected after your transplant. This might mean you need to make changes to how you work, for example doing less physical tasks for a while.

Top Tips: Managing side effects

Make sure your employer understands your side effects and how they affect you. You may find it helpful to give them our Information for employers booklet.
If you tell your employer about your side effects, they are legally required to help you manage them at work. See Your employment rights.
Ask your employer for any reasonable adjustments that would help you manage your side effects at work.
Your GP or transplant team may be able to refer you to an occupational therapist to help you to better manage your daily activities including work.
You can find more detailed information and practical tips about how to manage side effects in our booklets and on our website.

Enabling people to get back to work is good for their physical and mental health, and it's good for a sense of normality. Work offers people a social support network; the opportunity to interact with colleagues. Work is really so much more than being paid.
Dr Julie Denning, a Chartered Health Psychologist. You can read about the work she does for Working To Wellbeing in our blog.

While you're off work

It can be difficult to take such a long period off work. Try to look after yourself and stay in touch with your employer.

Your recovery

Some people find their recovery is relatively straightforward, but for others it can be mentally and physically difficult.

It’s common to have setbacks and need to return to the hospital, and you may experience side effects like graft versus host disease (GvHD) or fatigue. For more information, see our section Recovering from a stell cell transplant.

It’s important to allow yourself to recover at your own pace, and not to put pressure on yourself to get back to work before you’re ready.

You should have regular check-ups with your transplant team. This should help you understand when and how you’ll be able to go back to work.

Staying in touch with colleagues

Lots of people find it helpful to keep in touch with colleagues while they’re off. This helps you stay in the loop and feel like you’re returning to your old routine.

You could ask for internal newsletters or email updates. Or pop into work, dial into team meetings, send emails, talk on the phone or meet up with colleagues face-to-face. It’s up to you to decide what’s helpful.

If you’re self-employed, you could keep in touch with industry friends, colleagues, clients or professional organisations to stay updated.

Fit notes (sick notes)

Your medical team will give you fit notes (sick notes) to give to your employer for the time you’re off work.

Your physical health

What is a fit note?

A fit note (or Statement of Fitness for Work) is a form your healthcare professional, e.g. GP, hospital doctor or nurse, can give you if your health affects your ability to work.
They are also called medical notes, sick notes or doctor’s notes.
You will need to show the fit note to your employer to get your sick pay.
The fit note will also include information on your ability to work. This helps your employer understand when and how you might be able to return to work, and how they can support you.

While you’re recovering, it’s important to look after your physical health by taking care of your diet and gently building up physical activity. This will help you build up the strength and stamina you need to return to work. See our Essential guide to diet and physical activity booklet for more information.

Emotional wellbeing

Being off work for a long period can be challenging. It’s completely normal to have ups and downs, and to find things tough. Read our booklet Your mental health and stem cell transplant or have a look at the Recovery section of our website.

Top Tips: While you're off work

Take the time you need to recover before getting back to work.
Talk to your transplant team about your recovery, and when and how they advise you to return to work.
Keep in touch with your employer, colleagues or clients.
Get fit notes to give to your employer to get your sick pay.
Take care of your physical health and build up your physical strength.
Look after your emotional wellbeing and get help if you need it.

I took the difficult decision to leave the job that I had so looked forward to returning to. Things had changed, I had changed and my previous perfect job just wasn’t for me anymore. I wanted to do something for myself.
Nilush, who had a stem cell transplant to treat AML

Going back to work

Once your transplant team think you’re ready, you can start thinking about going back to work. This can feel exciting, but daunting, especially if you’ve been away a long time.

Make a Return to Work plan

Before you go back, arrange a meeting with your employer to set out a Return to Work plan.

Your Return to Work plan should include:

the date you’ll be returning to work
the role you’ll be returning to
your hours – you may need to return part-time to start with
your duties – these may be different to what you did before
any reasonable adjustments you think would help
any concerns you have about returning to work – such as people’s expectations of what you’ll be able to manage
how your pay will be affected by any changes.

Your transplant team should be able to advise you on what to ask for. You may need to get advice from an occupational health specialist. Working To Wellbeing can also provide advice.

Once you’ve agreed on a plan, make sure both you and your employer have a copy in writing, and that the plan is reviewed regularly.

If you’re self-employed, you can create your own Return to Work plan. Contact Working To Wellbeing for a template and advice.

Telling your colleagues

Lots of people find it helpful to tell their colleagues about their transplant. This can help them understand how they can support you. You could also share our information My friend is having a transplant.

You don’t have to tell your colleagues, or clients, about your transplant if you don’t want to. Your employer is legally required to keep your information confidential if you ask them to.

Catch-up meetings

It can be helpful to arrange official catch-up meetings with colleagues or clients, before you return or shortly after. This can help you settle back into your role and makes sure you’re up-to-date on any changes.

Training

If you’ve been off work for a while, you may be feeling low in confidence. Ask your employer if there’s any training you can do, or look into available courses if you’re self-employed.

Self-employment

If you’re self-employed, you might be able to be flexible with your hours and working patterns, to gradually ease yourself back into work.

However, you may be under more financial pressure to return to work and have to go back before you’re ready. For more information for self-employed people see the Macmillan website.

Financial support

If you’ve returned to work on a reduced income, you might be eligible for financial support or benefits while you’re working – see Benefits and financial support above.

Top tips: Going back to work

Make a Return to Work plan, and make sure it’s reviewed regularly.
You may need to work fewer hours or do things differently for a while.
Ask for reasonable adjustments.
Think about how you’d like to explain things to your colleagues.
Arrange official catch-up meetings with colleagues or clients.
See if there’s any training you can do to boost your confidence.
Look into financial support – you might be eligible for benefits while you’re working.

I was lucky in that I was able to go back to work gradually, building up from an hour a day to full time within 9 months.
Mel, who had a stem cell transplant to treat CMML

Telling your employer

Tell your employer about any side effects you have and how they affect you at work. Be clear that your side effects are because of your transplant (i.e. related to your disability).

If you do this, your employer is legally required to make reasonable adjustments to help you manage your side effects at work.

Making a change

After a transplant, some people make changes to how they work or decide to do something new. This can be a big decision, so consider your options and take your time.

Working differently

A transplant can make you take stock and reassess your priorities. Many people decide to look for a different type of work that allows them to manage their health and is a better fit with their life now.

For example, you may decide to look for a new job that is less physically demanding, or that allows part-time or flexible working. For more information about changing careers, see the National Careers Service website.

Applying for a job with a disability

When you’re applying for a job, you don’t have to tell an employer about your transplant.

However if you do, your employer is legally required to support you during the recruitment process and in your new job.

Look out for the disability confident symbol in job adverts. This means the employer takes a positive approach to hiring people with disabilities.

For more information about applying for jobs with a health condition, see Macmillan and the Equality and Human Rights Commission.

Studying and retraining

Some people decide to study to gain new skills or retrain for a different career. Studying can also be an enjoyable and productive way to use your time if you are unable to work. For free online courses, see the Future Learn and OpenLearn websites.

Giving up work

Some people stop working after a transplant. This is a big step, and has big implications, financially and emotionally. You may be eligible for financial support.

Think through your plans carefully and get independent advice. See the Macmillan Cancer Support and Working To Wellbeing websites for more information.

If you’re made to leave

If you’re made to leave your job because of your health, this could be illegal discrimination. For more information, contact Acas or the Equality Advisory and Support Service (EASS).

Volunteering

Some people decide to volunteer if they can no longer work after a transplant. This can give you a sense of purpose, help you stay active and build your social network. It can also provide a helpful structure for your time.

Do-it has a database of volunteering opportunities across the UK. If you’d like to volunteer for Anthony Nolan, have a look on our website or contact volunteering@anthonynolan.org

Coping with a change

Not being able to work in the way you did before can feel like a big loss. You may struggle to find focus and mourn for your old life. Our booklet Your mental health and stem cell transplant and the Recovery section of our website may help.

Top Tips: Making a change

Some people choose to rethink their priorities after a transplant and look for a different type of work that’s a better fit with their life now.
If you’re applying for new jobs, prospective employers are legally required to support you if you tell them about your transplant.
Studying or retraining can help you gain new skills and be an enjoyable way to spend your time.
Some people give up work after a transplant. This is a big step, and you may be eligible for financial support.
It’s illegal for your employer to make you leave your job because of your health.
Volunteering can be a fulfilling way to spend time if you can no longer work.
Big life changes can have an emotional impact. Look after yourself and ask for help if you need it.

I'd never want to go back to working full-time! This job is rewarding, but after being ill I see that there is more to life. Family is more important to me now, plus going out and trying new things.
Jemma, who had a stem cell transplant to treat AML. Jemma and other transplant recipients share their experience of returning to work in our blog.