Work and finances

As workplaces have re-opened, you may have returned to work. This might look like it did before the pandemic, or you may be working more flexibly. Perhaps you work fully remotely or a mixture of in person and remote working.  However work looks for you right now, it may be useful to remember that cystic fibrosis can be classed as a disability, which means people with CF have the right to request reasonable adjustments at work. This could include some home-working, particularly when infection rates are high. You can read more about this, and find information to help explain cystic fibrosis to employers in our employment factsheet. 

Many organisations have disability support networks, these are usually run by groups of volunteers within your organisation. They provide peer support and some campaign for improved polices at work. If this is of interest to you, speak with your manager or HR team to see if there is one where you work. 

COVID and long-COVID 

When dealing with long-COVID in the workplace, it may be a good approach to first speak with your health-care professionals or CF team. Then look at the guidelines below and contact us to help clarify anything about your entitlement around reasonable adjustments, flexible working or to ask any questions. You manager or HR team should also be able to advise what the policy is within your organisation.

If you have a CF-specialist social worker, they may be a good source of information about your rights surrounding living with CF and working with long-COVID.

ACAS has provided some useful guidance for employees and employers about COVID in the workplace. They also have advice about work and long-COVID.

The professional body of HR, CIPD have some guidance for employers on long-COVID which may help you in your own work. 

Financial implications 

If you are worried about the financial implications of any changes to your employment status, please speak to your CF specialist social worker or contact our Helpline, who can provide information on benefits and our welfare grant programme. The helpline can also arrange for you to have personalised advice from our Welfare and Rights Advisor or our Welfare Officer, who can support you to understand your rights and the options available. Further information about this can be found below. 

If you have ‘limited capability to work’, then you can claim New Style Employment and Support Allowance.

If you are currently receiving any legacy benefits (see below), it is very important that you seek specialist advice before claiming Universal Credit, as if you end up worse off on Universal Credit you will not be able to go back to legacy benefits.

Legacy benefits are:

• Child tax credit
• Housing benefit
• Income-related employment and support allowance
• Income-based jobseeker's allowance
• Income support
• Working tax credit

To check what benefits you might be entitled to quickly and easily, you can use an online benefit calculator.

It's a good idea to get advice about benefits, for example from an advice agency such as Citizens Advice. You can also speak to your CF team social worker, or you can contact our Welfare and Rights Advisor through our Helpline who can check what you may be entitled to.

In addition, you could claim Statutory Sick Pay. 

Anyone not eligible to receive sick pay, including those earning less than an average of £120 per week, some of those working in the gig economy, or self-employed people, may be able to able to claim Universal Credit and/or New Style Employment and Support Allowance.

For advice about carers rights at work, visit Carers UK.

An important part of understanding your employment rights is knowing whether you are employed or self-employed. You can find useful definitions on the ACAS website.