Your donation will make a difference:
Cystic Fibrosis Trust

Financial support and welfare advice during coronavirus

We know this is a worrying time for the 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: 1 June 2020

Latest update

In England,the Government recently released ‘Our Plan to Rebuild’, setting out the next phase of its response to coronavirus. In it, the Government states that those classed as ‘extremely clinically vulnerable’, which includes people with cystic fibrosis, will be advised to shield beyond the end of June. The Government has pledged to offer more support and assistance in the coming weeks for those who are shielding, though it is not yet clear what this will look like. 

The latest shielding guidance (updated 31 May 2020) says:

  • The Government is currently advising people to shield until the end of June and is regularly monitoring this position.
  • Those shielding (in England and Wales) can now leave their homes if they choose to, as long as they are able to maintain strict social distancing.
  • If choosing to spend time outdoors, this can be with members of your own household. If you live alone, you can spend time outdoors with one person from another household. Ideally, this should be the same person each time.
  • If you do go out, you should take extra care to minimise contact with others by keeping 2 metres apart.
  • You should stay alert when leaving home: washing your hands regularly, maintaining social distance and avoiding gatherings of any size.

The other guidance for those shielding still applies, including:

  • You should not attend any gatherings, including gatherings of friends and families in private spaces, for example, parties, weddings and religious services.
  • You should strictly avoid contact with anyone who is displaying symptoms of COVID-19 (a new continuous cough, a high temperature, or a loss of, or change in, your sense of taste or smell).
  • Other people in the household do not need to shield, but should do what they can to support you in shielding and carefully follow social distancing guidelines.
  • People shielding should minimise their contact with other members of the household and should follow instructions in the guidance about hygiene at home.
  • People shielding should register online for support with food and basic supplies. Across the home nations, packages of support have been put in place for people in this group, so that they can access help with their shopping, medication deliveries and care.

Clearly, all family and household setups are different and following this guidance will bring different challenges for different people. Making decisions about how you will fit this guidance into your own life and family may not be straightforward for you and may involve balancing risk with your own individual circumstances: work, children, relationships etc. We will be here to support the CF community through this difficult time and will provide all the information we can to support you in any decisions you need to make. We continue to work with the NHS, CF medical experts and the Government to push for further clarity about what the most recent guidance means for you and your family.

We have tried to provide some answers to the frequent questions we’re hearing on our helpline below. It’s important that people also seek advice from their CF team to support their decisions.

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 crisis.


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

In terms of how this applies to people with CF, cystic fibrosis can be defined as a disability and this means that someone with CF has the right to request ‘reasonable adjustments’ (for example, to request to work from home if possible due to the shielding guidance). We would suggest discussing this with your employer. You can read more about CF at work, and find general information to explain the condition to employers, here.

When talking to your employer about how the coronavirus outbreak affects you, it is a good idea to provide information about CF from an official source (you could use our information above), show your employer the link to the Government's guidance on protecting those who are ‘extremely vulnerable’ and that this specifically mentions CF, and show them the UKCFMA’s latest advice on our website. You may be asked to provide medical evidence, in which case you could discuss the letter or text messages you will have recently received from the Government, advising you to self-isolate for 12 weeks.

If you are worried about the financial implications of being unable to work, 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.

Employment information for those living with someone with CF who is shielding

We know many people who live with someone with CF and still have to attend their workplace are concerned about the risk of passing COVID-19 to the person in their household who is shielding. 

The following information has been prepared by the law firm Richard Nelson and we hope it will support people in this situation to have discussions with their employers.

We know this is a really difficult and stressful time for many people – if you feel your worries are impacting your ability to work, please speak to your GP.

Please note, this information does not constitute legal advice.

As you are no doubt aware, the effect of COVID-19, the Government’s response and issuing of guidance, and the existence of, and application of, employment legislation is changing daily. It is complicated and it is impossible to produce advice that applies to everyone, in all circumstances, that will be valid at all times. The information below is intended to be general guidance, not legal advice, and will be reviewed and updated as the situation changes.

Your rights around work if you are living with someone with CF

“I live in the same household as someone with CF and my employer is telling me that I need to come to work, and if I don’t, I won’t be paid and/or may face disciplinary action. What do I need to do and what are my rights? I want to protect the health of my household member who has been told to follow the shielding guidance.”

The answer to this question has increased in complexity following recent developments. On 11 May, following the Prime Minister’s announcement on the phased plan to exit lockdown, the Government published the document entitled ‘Our plan to rebuild: The UK Government’s COVID-19 recovery strategy’ May 2020 – CP239 (the Plan). The subject of returning to work was addressed in the announcement and in the Plan, with certain sectors of the economy in England being urged to reopen. This included organisations involved in food production, construction, manufacturing, logistics, distribution and scientific research. 

In some circumstances, this will mean that employees who have previously been placed on furlough leave, will now be asked to either work from home or physically return to their usual place of work.

Page 25 of the Plan states that “…[f]or the foreseeable future, workers should continue to work from home rather than their normal physical workplace, wherever possible.” On the same page, the Plan also states that “…[a]ll workers who cannot work from home should travel to work if their workplace is open…”

This will be extremely worrying for those who live in a household where a member of that household has CF and is shielding. The Government’s guidance on shielding remains unchanged and therefore shielding will remain in place until the end of June 2020 and may be subject to review at that point. 

When the Coronavirus Job Retention Scheme was initially announced, it wasn’t clear whether you, as a category of people (the category being someone living in a household where a member of that household is shielding because they have CF), would be covered by the scheme. However, it was confirmed that you would be covered, and therefore could be placed on furlough leave, when the Government updated its guidance for both employers and employees on 4 April 2020. At that point you may have been placed on furlough leave specifically because of the clarity provided by the 4 April update. The employer was permitted to apply the Coronavirus Job Retention Scheme retrospectively and backdate it to 1 March 2020, if the employee had been absent from work from that date.

This position remains the same, despite the Prime Minister’s announcement and the publication of the Plan. On 14 May 2020 the Government updated its guidance in relation to the Coronavirus Job Retention Scheme (furlough leave) for both employees and employers. The guidance entitled ‘Check if your employer can use the Coronavirus Job Retention Scheme’ for employees, which was first published on 26 March 2020 was last updated on 14 May 2020. 

The guidance hasn’t changed on this point and still specifically states: 

"If you are shielding in line with public health guidance or required to stay home due to an individual in your household shielding and are unable to work from home, then you should speak to your employer about whether they plan to place staff on furlough.

"If you are unable to work, including from home, due to caring responsibilities arising from Coronavirus (COVID-19), such as caring for children who are at home as a result of school and childcare facilities closing, or caring for a vulnerable individual in your household, then you should speak to your employer about whether they plan to place staff on furlough. 

"The grant will start on the day you were placed on furlough and this can be backdated to 1 March 2020.”

The guidance for employers entitled, ‘Check if you can claim for your employees' wages through the Coronavirus Job Retention Scheme” was also updated 14 May 2020 (Employer’s Guide).

The guidance on ‘Check which employees you can put on furlough’ specifies the following: 

"Employees who are unable to work because they are shielding in line with public health guidance (or need to stay home with someone who is shielding) can be furloughed.

"Employees who are unable to work because they have caring responsibilities resulting from coronavirus (COVID-19) can be furloughed. For example, employees that need to look after children can be furloughed.”

"Shielding here refers to the reference to Public Health England’s explanation, which was published on 5 May 2020. This was an update of the original explanation which was first published on 17 April 2020. The guidance of 5 May 2020 is entitled ‘Guidance on shielding and protecting people who are clinically extremely vulnerable from COVID-19’." 

Both the employer and employee guidance regarding furlough now state the following: 

"This is a temporary scheme that was initially put in place for 4 months starting from 1 March 2020 and will continue in its current form until the end of July. Employers can use the scheme anytime during this period. From August, employers currently using the scheme will have more flexibility to bring their furloughed employees back to work part time whilst still receiving support from the scheme.

"This will run for three months from August through to the end of October. Employers will be asked to pay a percentage towards the salaries of their furloughed staff. The employer payments will substitute the contribution the government is currently making, ensuring that staff continue to receive 80% of their salary, up to £2,500 a month. More specific details and information around its implementation will be made available by the end of May.

"The scheme is designed to help employers whose operations have been severely affected by coronavirus (COVID-19) to retain their employees and protect the UK economy. However, all employers are eligible to claim under the scheme and the government recognises different businesses will face different impacts from coronavirus.”

What do I do now?

What you need to do now depends on the circumstances under which you were placed on furlough leave. You may have been placed on furlough leave because your place of work was required to close or your employer may have suffered a downturn in work and/or income stream as a result of COVID-19, and, therefore you were placed on furlough leave because it was unable to operate or had no work for you to do. Alternatively, you may have expressed your concern to your employer that by continuing to work you would risk the health and safety of a member of your household and therefore your employer agreed to place you on furlough leave. 

Employees who were placed on furlough leave because they live in a household with a child who has CF and is shielding, shouldn’t need to do anything. The circumstances haven’t changed. The employee continues to have childcare responsibilities for the child, which would make working from home difficult. They will continue to have the same concerns about their child’s health and safety if they were to attend their usual place of work. The Government’s guidance as set out above still supports the position that those employees will be covered by The Coronavirus Job Retention Scheme.

Employees who were placed on furlough leave because they live in a household with a person who has CF and is shielding (but who does not require childcare) shouldn’t need to do anything. The position hasn’t changed and the Government’s guidance as set out above still supports the position that those employees will be covered by The Coronavirus Job Retention Scheme.

Employees who were placed on furlough leave because their place of work was required to close or because their employer had suffered a downturn in work and/or income stream as a result of COVID-19 should ask their employer to allow them to work from home (if childcare needs allow for that); or, if it is not possible to work from home, to continue to place them on furlough leave because they live in a household with a person with CF who is shielding. The employee should direct the employer to the Government’s guidance and reference the information quoted above, to reassure the employer that the scheme covers them as an eligible category.

Unfortunately, it is still the employer’s choice as to whether or not they place an employee on furlough leave – the employee cannot enforce the right directly or apply for furlough pay directly. If employees are able to work from home, the employer may insist on this rather than furlough leave. 

In all cases, if you live in a household with a person who has CF who is shielding, and you are concerned about the risk of bringing the virus into your household by attending your place of work, you need to communicate your concerns to your employer in writing, explaining your circumstances. You should provide clear information about CF, including information provided by the Cystic Fibrosis Trust and, if possible, medical evidence from the CF Centre team. It is important that you clearly explain that, because of their CF, the member of your household has been identified by Public Health England as clinically extremely vulnerable and therefore at the greatest risk of severe illness from COVID-19. Further, you should explain that by travelling to and attending your place of work you are exposing them to the virus by potentially bringing it back into the home, placing them in serious and imminent danger that can only be averted by staying at home with them, in keeping with their shielding requirements. 

What about employment rights laws?

The law setting out the rights of employees who have health and safety concerns is complex and the relevant sections of the Employment Rights Act 1996 were not purposely drafted with a pandemic in mind. How they apply in these circumstances hasn’t yet been tested by the Employment Tribunals or Courts and will be subject to interpretation. 

However, if you are having this discussion with your employer you need to be aware of the following principles. 

Section 44 of the Employment Rights Act 1996 (ERA) protects an employee from suffering a detriment if, in circumstances of danger, which they reasonably believed to be serious and imminent and which they could not have reasonably been expected to avert, they leave or refuse to return to the place of work or the dangerous part of the place of work. It also protects those who, because of the same reasonable belief, take appropriate steps to protect themselves or other persons from danger. Section 100 of the ERA prohibits dismissals under the same circumstances (specifically subsections (1) (d) and (1) (e)). 

Further, the communication of concern to the employer is in itself protected under the provisions that protect whistle-blowers. Under section 43B(1)(d) of the ERA, informing the employer that “the health and safety of any individual has been, is being or is likely to be endangered” constitutes a qualifying disclosure and protects the employee who raised it against further detriment. 

A detriment can include but is not limited to, suspension, reduced or withheld pay, demotion, or dismissal. In taking any of these actions, the employer will expose itself to liability for compensation for injury to feelings, loss of earnings and potential claims of a detriment short of dismissal, constructive unfair dismissal, unfair dismissal or breach of contract. There is an interesting argument about reduction of pay if the employer reduces pay to the 80% level under the Coronavirus Job Retention Scheme. If the employer reduces pay because it is entitled to, because it has authority to lay the employee off in the contract of employment and because it is applying the Coronavirus Job Retention Scheme, that is fine. If the employer reduces pay to 80% following and because of a protected disclosure about health and safety concerns, that is a detriment and therefore shouldn’t happen. 

Government guidance is clear that employees should work from home where possible. When it isn’t possible, social distancing and hygiene measures to achieve infection control should be adhered to in the workplace. If social distancing and hygiene infection control measures cannot be maintained in full in the workplace, then those operations or activities should only be continued if they are necessary for the business to operate. If the social distancing cannot be maintained and those operations or activities continue, they are placing employees at risk of catching COVID-19 and should therefore take all the mitigating actions possible, to reduce the risk of transmission between their employees and/or members of the public. The employer’s first step should be a risk assessment. The Government has produced practical advice for employers in eight individual, sector specific sets of guidance, which were published on 11 May 2020. 

We don’t currently know how the Employment Tribunals will apply section 44, section 100(1)(d) and section 100(1)(e) of the ERA to issues involving COVID-19. The key will be to be establishing that there was a risk of serious and imminent danger. It may be that Tribunals take the view that while we are dealing with a declared pandemic, there will be a constant risk of serious danger and that risk will always be imminent. Alternatively, the Tribunals may consider the measures that the employer has put in place following a risk assessment and how that has been communicated to the employee, looking at the employee’s knowledge and the facilities and advice available to them at the point that the employee left work, refused to return to work or took protected action. If this is the case, each case will be assessed on its own very individual circumstances. 

Employment Tribunals might also consider the means available to the employee to reduce the risk of transmission at home. Is the employee able to socially distance from the member of the household with CF within the home? This will depend on the demands of that persons CF care plan, treatments and need for physical assistance. 

Making a decision that is right for you

As the law remains untested and circumstances are subject to change, you may feel that you are being placed in an impossible position if your employer insists that you return to your place of work despite your concerns. In order to make a decision that is right for you, you need to:

  • have the discussion with your employer and set out your concerns in writing as described above;
  • request a copy of your employer’s risk assessment and an explanation of the measures and structures that they have put in place to enable social distancing and allow hygiene infection control measures and their plan for communication to and surveillance of their work force in terms of adherence and detection of symptoms;
  • assess and plan how you would travel to work and carry out your own risk assessment for the journey. If driving your own car, looking at any risks posed by the practicalities such as how, when and where you would park your car. This risk assessment can be communicated to your employer;
  • seek advice from a medical expert, ideally from your CF Centre, ensuring that you provide the information from your employer about the assessed risk and measures discussed above and your circumstances at home and ability to socially distance within your household, whether that is possible, given the requirements of the CF care plan; and
  • seek legal advice on your individual circumstances.

What else can I do?

Parental leave

Parental leave is a form of statutory unpaid leave available to some working parents. The total amount of unpaid leave that can be taken per child is 18 weeks and this can be taken up to the child’s 18th birthday. The right to parental leave is limited to employees who have been continuously employed for a period of not less than one year, who have, or expect to have, responsibility for a child. 

Some employers may offer enhanced, contractual parental leave, which could include payment during some or all of the leave. It is therefore important to check your employer’s existing policies. 

Time off for dependants

Employees have the right to take a reasonable amount of unpaid time off work to take necessary action to deal with particular situations affecting their dependants. The right applies to employees only but covers all employees irrespective of length or service, working hours or whether the employment is permanent or on a fixed-term basis. 

The right provides that an employee is entitled to take reasonable time off where it is necessary:

  • to provide assistance if a dependant falls ill, gives birth, is injured or assaulted;
  • to make care arrangements for the provision of care for a dependant who is ill or injured;
  • in consequence of the death of a dependant;
  • to deal with the unexpected disruption, termination or breakdown of arrangements for the care of a dependant;
  • to deal with an unexpected incident which involves the employee’s child during school hours.

The Government guidance on this entitlement can be found here.

Under what circumstances can I claim SSP?

If you are yourself displaying symptoms of COVID-19, or someone in your household is displaying symptoms, you will be entitled to Statutory Sick Pay (SSP) for 14 days from the date on which the symptoms first started or until you are well enough to return to work. 

If you are contractually entitled to receive company sick pay, you will be entitled to company sick pay, in accordance with your employer’s sick pay scheme. If you are in a household where someone within that household is displaying symptoms, and you are isolating, you may potentially be entitled to receive company sick pay, but it will be at your employer’s discretion. This is because you, as an individual are not actually sick. If you go on to experience symptoms yourself, you will then be entitled to company sick pay. It is important that you keep your employer up to date with regard to your circumstances. 

Can I request that my employer makes reasonable adjustments to allow me to work from home? 

Only individuals with a qualifying disability (under section 6 of the Equality Act 2010) can request reasonable adjustments. Unfortunately, you cannot request adjustments because of someone else’s disability. 

The information contained above is not intended to constitute legal advice. Legal advice will vary, depending on an individual’s specific circumstances. This information has been produced by the Employment Law Department of Richard Nelson LLP

Financial support

We have made amendments due to the social shielding guidance and the press release about benefits reassessments and the new scheme for the self-employed.

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:

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

The Government has announced new measures 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 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.

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 due to the shielding guidance. You might be entitled to more money while you're off work.

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.

This means that those who are shielding are entitled to claim SSP. You can read this legislation here.

Employers should use their discretion and respect the medical need to self-isolate in making decisions about sick pay.

Anyone not eligible to receive sick pay, including those earning less than an average of £118 per week, some of those working in the gig economy, or self-employed people, is able to claim Universal Credit and or contributory Employment and Support Allowance.

However, the most recent announcement about support for businesses is that they can get help under the Coronavirus Job Retention Scheme, so you can speak to your employer as to what your status is.

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.

When and how should I get an isolation note?

NHS 111 have an isolation note you can apply for here.

These notes are for those who have been advised to self-isolate – either for themselves, or for someone they live with – and cannot work. The note can be accessed on the NHS website, or on the NHS 111 website.

  • In the first seven days of self-isolating – employees don’t need to give evidence to employers as they can self-certify
  • After seven days of self-isolating – Isolation note available if employer asks for evidence
  • Universal credit claimants do not need to produce a fit note/isolation note

Matt Hancock, Secretary of State for Health and Social Care, has said: “Digital isolation notes will provide reassurance to those self-isolating and their employers while also reducing the pressure on our NHS, so they can continue doing all they can to protect the people of this country and save lives.”

I have a Jobcentre appointment but have been advised to stay at home.

People receiving benefits do not have to attend jobcentre appointments for three months, starting from Thursday 19 March 2020.

People will continue to receive their benefits as normal, but all requirements to attend the jobcentre in person are suspended.

People can still make applications for benefits online if they are eligible.

Jobcentres remain open and will continue to support people who are not able to use phones or the internet, including homeless people.

If you are already claiming Universal Credit and think you may have been affected by coronavirus, please contact your work coach as soon as possible. You can do this through your online journal or by calling the helpline.

You can find out more here.

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

As of Tuesday 17 March, face-to-face assessments for all claimants on disability benefits are suspended for the next three months. This temporary move is being taken as a precautionary measure to protect vulnerable people from unnecessary risk of exposure to coronavirus and will affect claimants of Personal Independence Payment, those on Employment and Support Allowance and some on Universal Credit, and recipients of Industrial Disablement Benefits. The suspension also covers new claims to those benefits.

Anyone who has a face-to-face assessment appointment scheduled from Tuesday 17 March onwards does not need to attend and will be contacted to discuss next steps and alternative arrangements, which could involve either telephone or paper-based assessments. Take a look at our PIP telephone assessment factsheet (1.046MB) for more information and how to prepare.

We hope this suspension should not disrupt processing of benefits claims or actual payments, and we advise people to keep an eye on updates from the official Government web page.

The Government has suspended all benefit reviews and reassessments. How will this affect me?

As of Tuesday 24 March, reviews and reassessments for disability benefits are being suspended for the next three months. All awards and reassessments for health and disability benefits will be extended. This includes Universal Credit (UC), Employment and Support Allowance (ESA), Personal Independence Payment (PIP), Disability Living Allowance, Attendance Allowance and the Industrial Injuries Disablement Benefit.

  • PIP claimants – if an assessment has already taken place this will continue to be processed. If an assessment has been scheduled, claimants will be contacted by the assessment provider to discuss how this will be taken forward.
  • ESA and UC claimants – those whose cases have been referred to the provider will be contacted to take this forward.

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. However, if you have to stay at home under social shielding guidance, or you are a carer, you need to let them know. 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.

The Government will also provide local authorities in England with £500m grant funding to support economically vulnerable people who are impacted by the economic fallout of the virus in their local area. The Treasury expects most of this funding to be used to provide council tax relief, either through existing Local Council Tax Support schemes or through complementary reliefs. We do not yet know how accessible this help will be, but we will be monitoring the situation closely.

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 and Rights Advisor.

Support while you are at home

We know many people in the CF community have concerns about how they will access food, medication and any care they need during the 12-week isolation period set out in the shielding guidance. The guidance suggests getting food and medication delivered (whilst maintaining a safe distance from anyone delivering to your house).

You have also shared your concerns about accessing supermarket deliveries and being able to get the food needed to maintain the CF diet. We have contacted major supermarkets and food banks to ensure they are aware of the needs of the CF community and can provide what you need, and we have been lobbying Government and devolved administration across the UK to ensure they provide vital support for those who are shielding. Supermarkets are slowly receiving Government lists of those who need priority for online delivery slots. The timescales for this do vary across the UK and each supermarket has their own plans and processes to follow, and we continue to monitor this closely. In the meantime, you can find more information further down this page about ways to access food.

Support across the UK

Across the UK, support is available to people who are shielding. The packages of support being set up include medication deliveries – please contact your CF team if you have particular concerns about this and see our general FAQ for more info on delivery of medicines. The way this shielding support is accessed and delivered varies between the nations as follows (we are updating this regularly as more information becomes available):

  • In England, you will need to register online once you receive a letter/text to tell you that you are in the shielded group. The registration will ask you if they have help to get shopping – if you confirm that you don’t have help, we expect that you will receive a weekly Government food parcel. If you do need additional help at any point, contact your local council’s ‘community hub’. They can provide support, including volunteers who can help with shopping, collecting prescriptions etc.
  • In Wales, you will need to contact the council to specifically ask for help, and to tell them if you can’t get shopping and therefore need a parcel, or if you need help collecting prescriptions etc.
  • For those in Northern Ireland, the support scheme is being operated by Advice NI. We are waiting for final details on food parcels but there seems to be a focus on food poverty, so food parcels will likely go to those who can’t afford food and need someone to deliver. We suggest contacting Advice NI if you need help. We also part fund a benefits and welfare advice service at Advice Space Belfast.
  • In Scotland, support will be offered via text messages. Anyone who hasn’t received a text offering support (which should follow a shielding letter/text) can contact their local council to tell them they need help. The Scottish Government have also set up a phone line, which you can call if you need any support: 0800 111 4000.

In all areas of the UK, many volunteers have signed up to provide help and support, so if you do find yourself struggling, whether you had previously said you didn’t need help or if you are still waiting for your official shielding letter from the NHS, do get in touch with your local council. You can find the phone number via an internet search but if you need help with this, please get in touch with our helpline team. Local and national volunteers can also provide support if you are struggling with feeling alone.

Places of worship, although now closed, are still on hand to provide advice and support to their communities, so you could try contacting religious leaders from your local church, synagogue, mosque or temple if you need help.

For general information and guidance about shielding in each of the nations, please see these links:

Accessing food while you're shielding

It’s understandable that people who live with someone with CF will want to reduce any risk of picking up the virus by avoiding trips to the shops. While Government advice is to use online shopping deliveries, we know these are difficult to access at the moment. We have written to all major UK supermarkets to ensure they are aware of the issues facing the CF community. We’re also working behind the scenes to find other ways to support people affected by CF to get the food and supplies they need.

Many shops are saying that priority will be given to those who have been advised to shield. We’ve prepared this letter which may be helpful if you need to explain CF to businesses who have said they’ll prioritise people in the vulnerable group. This is a general letter about CF, so you’ll also need to have a letter to say you/your child has CF to go with this. This could be a past letter from your CF team, or the text messages/letter you’ve received advising you to stay at home for 12 weeks.

Download the letter

In England the Government has asked anyone in the extremely vulnerable group to register for packages of support, and similar schemes are now being set up in Wales, Scotland and Northern Ireland (details below).

Contacting supermarkets

Some supermarkets have set up dedicated telephone lines for people who are shielding, so you can call to register and/or to try to book a delivery slot. All the numbers we are aware of are listed here:

Morrisons: 0345 611 6111 - select option 5

Sainsbury's: 0800 328 1700

Tesco: 0800 917 7359

Other supermarkets have confirmed they are working to ensure slots are available for those who are shielding – if you have an existing online account they will be trying to identify you from the Government lists, in order to provide delivery slots.

Steps for accessing food

We know how worrying it is if you’re struggling to get a supermarket delivery – but there are other options you can try:

1. Phone a friend

If possible, ask a friend of family member who doesn’t live with you and isn’t isolating/shielding to deliver shopping. They are advised to put shopping on your doorstep and remain a safe distance away from you when making the delivery. It can feel difficult or uncomfortable to ask for help, especially when you are usually independent, but we are in a national emergency and many people want to do something to help in their local community. Helping someone else gives people meaning, purpose and a sense of ‘usefulness’ at a difficult time – so really you are helping them too.

2. Contact local volunteer networks

If you don’t have local friends and family who can help, there are lots of mutual aid and volunteer groups who are ready and willing to provide support in their local area. Local councils are already coordinating volunteer efforts, so do contact your local council for support.

3. Try local shops

Many local shops, from small corner shops and convenience stores to bakeries, grocers and farm shops, are offering deliveries, and some are prioritising vulnerable people. Most are not set up to take online orders so it’s best to phone them. They can often take card payments over the phone and will leave your shopping on your doorstep. Buying from neighbourhood shops also supports local business. Milkmen can also supply basic provisions. We do know this can sometimes be more expensive than your usual supermarket shop. If this leaves you struggling financially, please contact our Helpline for details of our emergency grants.

4. Order a food box

Some supermarkets and large retailers have set up food box schemes, where you can order a standard box. These are usually delivered by couriers so don’t rely on delivery slots. These contain a range of items, but you will probably need to supplement this with fresh meat, fruit, vegetables, diary products etc (local shops can be really helpful for these).

We are aware of the following national retailers providing this service. Below are links to more information on the service they provide:

All of these have been popular so they do sell out sometimes, but usually become available again within a few days.

5. Try national food suppliers and wholesalers

As an alternative to supermarkets, you could try contacting other national food suppliers/wholesalers offering home deliveries, who can also supply non-food provisions.

Bidfood is supporting the Government response to provide food parcels to vulnerable groups. They have advised us that they also have priority delivery slots for those in the vulnerable groups.

You can register as a new customer here.

They also advise that you register on Bidfood Direct for allergen info, nutritional info, cooking instructions and more, and you can also download the app and order quickly and easily online.

Please note Bidfood has a minimum order requirement of £100 (for orders under this amount, a £10 delivery fee will be charged).

Other online food suppliers recommended by our community include:

JJ Food Service - minimum spend £79. Next day delivery options available.

6. Food parcels

Government food parcels (example pictured) are being provided to those who are shielding who have said they need help to get food. This works slightly differently cross the nations. Please see our information on ‘support across the UK’ above for further details. We are working with Government departments to ensure that, when organising food parcels, they understand the diet needs of people with cystic fibrosis.

7. Contact a foodbank

If you are in desperate need of food and you are in financial difficulty, contact your local foodbank. We have been in touch with national foodbank organisations who have confirmed they will help if they can and will do their best to deliver to your doorstep. Do let them know you are in the vulnerable group because you have cystic fibrosis.

Keeping up a high calorie diet

Most people with CF require a high-calorie diet to stay well, but we know that in these challenging times getting hold of the right kinds of food to support your diet can be incredibly challenging. We are working with CF dietitians to produce resources to help you to keep up a healthy diet during this time. In the meantime, take a look at quick ways to add 100 calories to your diet, adapted from one of our nutrition leaflets.

Education and early years settings

All schools in England, Wales, Scotland and Northern Ireland are currently closed, except for the children of key workers and children who may be at risk away from school. If you are a key worker and you have a child with CF in your household, please speak to your local CF centre.

In May, the Government announced that schools and early years settings in England should prepare for phased re-opening from 1 June. Reception, Year 1 and Year 6 are expected to be the first school year groups to return. The Government’s ambition is that all primary pupils will have at least one month’s education in-school before the end of the summer term, though this will be kept under review. Secondary schools and further education colleges may also begin some face-to-face contact with Year 10 and 12 pupils who have key exams next year, while they continue remote learning.

Guidance has been published to support schools in England to re-open safely. The guidance states:

  • Children with CF are not expected to come back to school while they are shielding.
  • School staff who have CF are not expected to return to work while they are shielding.
  • If a child or school staff member lives with someone who is shielding, they should only attend school if very strict social distancing can be adhered to. Our understanding is that the Government accepts that this will not always be possible so you should discuss with your school about learning/working from home.
  • Schools should follow advice from the Government about hygiene in school and should put social distancing measures in place.

Childminders, nurseries and pre-schools in England are also being asked to re-open for all children from 1 June, and specific guidance for early years settings is due to be released shortly.

The devolved nations have not stated any dates by which they expect schools and early years settings to reopen.

Higher education institutions across the UK remain closed until further notice.

We will update this page as and when further information becomes available.

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, staying at home and shielding

Important information for people with CF and their loved ones about coronavirus (COVID-19), and what social distancing and social shielding measures you should be taking.