Financial support and welfare advice during coronavirus

We know this is a worrying time for the cystic fibrosis (CF) community, and many have questions and concerns about the spread of the coronavirus (COVID-19) and how it may affect them. We have tried to provide some answers to the frequent questions we’ve received to our helpline below. It’s important that people also seek advice from their CF team to support their decisions.

Last updated: 29 July 2021

Latest update

From 1 April 2021, shielding stopped in England and Wales. Shielding stopped in Northern Ireland from 11 April and Scotland from 26 April. The shielded patients list is being retained in case there is a need for further shielding advice in future.

Restrictions remain in place across the UK, and vary by nation. This is an evolving situation, and the most up to date information can be accessed via the links below.

People who are clinically extremely vulnerable across the UK are still asked to take extra precautions to protect themselves. Following the end of shielding, people who are clinically extremely vulnerable are still advised to work from home where possible, but can return to work providing their workplaces is COVID-secure.

The situation remains that most children with cystic fibrosis (CF) are no longer classed as clinically extremely vulnerable, though a small number remain on the shielding list on medical advice.

Schools across the UK have begun reopening. All primary schools and some secondary schools have now resumed face to face learning; other secondary schools are reopening on a phased basis. View the latest education guidance across the UK.

The Government's furlough scheme has been extended until the end of September 2021. The Government food parcel scheme has now ceased; however, some of the support measures in place for those who have been shielding (such as the NHS Volunteer Responders scheme in England) continue to deliver food and medication where needed.

Read the latest general guidance and shielding guidance across the UK:

If you or your children are struggling to cope with worries about the virus, visit our page on mental and physical health during the COVID-19 pandemic.


ACAS has provided some useful guidance for employees and employers, which is quite general but is also very clear and straightforward.

As restrictions are lifting, some people with CF have shared their concerns about returning to their workplace. 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.

You can read more about this, and find information to help explain cystic fibrosis to employers in our employment factsheet. You may also find the latest guidance from the CFMA helpful, as well as government guidance for those who are clinically extremely vulnerable across the UK.

The ‘Safe At Work’ campaign has also produced a letter to employers which you may find useful if you are concerned about the risk of COVID-19 as and when you return to your workplace.

We will continue to keep this information updated. If you are worried about the financial implications of any changes to your employment status,

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.

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.

Financial support

It is very difficult to give general benefits advice, as your entitlement depends on many things, like who you live with, if you have a partner in employment, your savings situation, and your National Insurance record.

Another major factor is whether you have a good relationship with your employer, and if you are entitled to any contractual sick pay. Your employer can also get support.

Sometimes there are difficult decisions to make, and while we don’t always have the answers, we can support you and make sure you are well informed to make your own decisions weighing up practical arrangements, finances and risks to health.

If you are currently receiving any legacy benefits (see below), we would stress the importance of seeking specialist advice rather than following what has been reported in the press about claiming Universal Credit, as this could mean you are at risk of losing something else you receive.

Legacy benefits are:

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

Here are answers to some more specific questions that you might have about financial support and benefits:

Employment rights

I am self-employed and am therefore not able to earn what I used to. What could I claim? 

The Government set up a scheme to support you if you're self-employed or a member of a partnership and have lost income due to COVID-19. This scheme will allow you to claim a taxable grant worth up to 80% of your trading profits up to a maximum of £2,500 per month for the next three months.

Find out more about eligibility and how to access the Self-employment Income Support Scheme (SEISS) here.

Claim the fifth grant if you think that your business profit will be impacted by coronavirus (COVID-19) between 1 May 2021 and 30 September 2021. Claims for the fifth SEISS grant close on 30 September 2021. This will be the final SEISS grant available.

If you are self-employed, you may also be able to claim support through the Welfare system. What you can claim will depend on your personal circumstances and your means/savings. You may be able to claim New-style Jobseeker’s AllowanceNew-style Employment and Support Allowance and/or Universal Credit. However, please seek specialist advice before making any claims.

If you already get benefits like Tax Credits or Housing Benefit, tell the office paying you that you can't work because you're sick or unable to work. You might be entitled to more money while you're off work.

When you go back to work, you will need to let them know.

I am employed and not going to work. What could I claim?

If you are employed and are on sick leave, you may be able to get contractual sick pay or Statutory Sick Pay.

In the UK, those who are deemed to be incapable of work by reason of coronavirus now also includes a person who:

  • is defined in public health guidance as extremely vulnerable and at very high risk of severe illness from coronavirus because of an underlying health condition; and
  • has been advised, by notification sent to, or in respect of, that person in accordance with that guidance, to follow rigorously shielding measures for the period specified in the notification.

You can read Government legislation on SSP legislation here.

You might still be able to get SSP if you can’t work from home and it’s not safe for you to go to work. You’ll need a fit note from your doctor to give to your employer.

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.

What you can claim, if you have no income, will depend on your personal circumstances and your means/savings. You may be able to claim New-style Jobseeker’s AllowanceNew-style Employment and Support Allowance and/or Universal Credit. However please seek specialist advice before making any claims.

The Government has started to resume face-to-face health assessments for benefits. How will this affect me?

From May 2021 resumed face-to-face health assessments for benefits for those who it is unable to fully assess by other channels. Face-to-face assessments will take place alongside existing paper-based assessments, and telephone assessments, which will continue to take place where suitable.

The Department for Work and Pensions has worked with its assessment providers to ensure that assessment centres are fully compliant with COVID-19 safety measures and on 29 March 2021 published detailed guidance on for claimants to support the safe resumption of face-to-face assessments. This covers measures such as social distancing requirements, sanitisation, PPE and face coverings.

Take a look at our PIP telephone assessment factsheet (1.046MB) and PIP face-to-face assessment Factsheet for more information and how to prepare.

My Claimant Commitment on my Universal Credit says I should be looking for work for a certain number of hours per week. However, I have to stay at home to protect my health/the health of the person with CF that I care for. Will I be sanctioned?

Your Claimant Commitment can be tailored to your circumstances and can also be reviewed and changed if needed at any time, and requirements can be ‘switched off’. Work Coaches have a broad discretion to customise your Claimant Commitment to meet your needs, and Claimant Commitments will be sensitive to people's additional needs during the coronavirus outbreak, such as people who have additional childcare responsibilities at the moment. If your work coach sets a claimant commitment which you do not feel you can comply with, you should get advice. This is because failing to comply with a claimant commitment means you can be sanctioned.

Find out more information on Universal Credit’s Claimant Commitments or childcare

I’ve been advised to claim Universal Credit if I can’t work due to coronavirus but I’m not sure how I will cope with the five-week wait. Is there any help available?

It is possible to apply for an advance payment of Universal Credit, but this money does need to be paid back. You may be able to apply for a grant from the Cystic Fibrosis Trust, if you meet the criteria. There are also many other charities who offer non-repayable grants to help individuals on low incomes. 

If required, you can access advance payments upfront without needing to attend a jobcentre. Find out more here.

Please contact our Helpline if you need further information. 

How is the Cystic Fibrosis Trust supporting those in most financial need at this difficult time?

The Trust has always provided emergency grants (as well as a range of other grants) to those in financial need, in order to help everyone with CF stay as well as possible. We are expanding our grant programme to provide more emergency grants right now, to protect the health of those with CF who are facing financial struggles by ensuring they are able to afford the food and basic essentials they need. More information and the grant application form can be found on our emergency grants page.

Our Helpline team are on hand if you have any questions about our grants, and can also put you in touch with our Welfare Team .

Education and early years settings

Reopening of schools across the UK began in February. Further information about education across the four nations can be found in the general guidance links below:

This page is being regularly reviewed and updated as coronavirus advice and guidance changes.

Mental and physical health

Helpful advice on how you can maintain your emotional and physical wellbeing through a range of activities.

The impact on your CF care

Information on how the COVID-19 outbreak could affect your routine CF care, what to do if you contract COVID-19 and other frequently asked questions.

Coronavirus updates and FAQs

Important information for people affected by cystic fibrosis about coronavirus (COVID-19), and the latest guidance on how to stay safe.

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