Your donation will make a difference:
Cystic Fibrosis Trust
Forum

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: 6 April 2020

Latest update

The government recently released new guidance about social shielding for those who are considered ‘extremely vulnerable’ to COVID-19. We are expecting everyone with CF across the UK to hear from the NHS by text message/letter to confirm they are being advised to follow shielding guidance. If you do not receive a letter, the NHS advice is to contact your GP.

This guidance says:

  • People in this group (adults and children) should self-isolate for 12 weeks from the day they receive the letter (stay at home, avoid face-to-face contact).
  • Other people in the household do not need to self-isolate for 12 weeks, but should be very strict about following social distancing guidelines.
  • People in this group should minimise their contact with other members of the household and should follow instructions in the guidance about hygiene at home.
  • Across the home nations, packages of support are being 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 this 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.

Education

All schools in England, Wales, Scotland and Northern Ireland are now closed until further notice, 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.

Work

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.

I live in the same household as someone with CF and my employer is telling me that I need to come to work or I won’t be paid. What are my rights?

On 4 April 2020, the Government updated its guidance in relation to the Coronavirus Job Retention Scheme (furlough leave) for both employees and employers.

The guidance 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”

The guidance for employers is now here, and specifies as follows:

“You can claim for furloughed employees who are shielding in line with public health guidance (or need to stay home with someone who is shielding) if they are unable to work from home and you would otherwise have to make them redundant.”

Shielding here now refers to the reference to Public Health England’s explanation of the measures described in in its guidance, entitled ‘Guidance on shielding and protecting people defined on medical grounds as extremely vulnerable from COVID-19’ which was updated on 30 March 2020.

The effect of these updates is that employers are now able to place you on furlough leave and claim 80% of your pay from the Government. It is still the employer’s choice as to whether or not they place you on furlough leave. If you are able to work from home, your employer may instruct you to do so. If you are not able to work from home your employer has the option to place you on furlough leave. Employers also have a choice as to whether they top up the pay from the 80% that can be claimed back, to the employee’s normal level of pay.

It is therefore important to make it clear to your employer that you would like to be placed on furlough leave and where necessary, that you consent to a reduction of your wages to the 80% that can be claimed back (subject to a cap of £2,500 per month).

Health and safety

If your employer refuses to allow you to work from home, or select you for furlough leave you can inform your employer in writing (ideally by email with a delivery and read receipt) that you believe that attending work would place your loved one in serious and imminent danger and on that basis you cannot return to the work place. This would require you to explain the circumstances, why your attendance would cause serious and imminent danger, how staying away from the workplace would avoid it and that you would return to work when the danger no longer persisted. 

It would be advisable to provide as much information about CF as possible, including information provided by the Trust and from the person with CF’s CF centre.

Section 100 (1) (d) of the Employment Rights Act 1996 protects employees who are dismissed because, in circumstances of danger, which the employee reasonably believed to be serious and imminent (and which the employee could not reasonably have been expected to avert), the employee refused to return to the workplace. Section 100 (1) (e) Employment Rights Act 1996 protects an employee in the same circumstances, who takes appropriate steps to protect himself or other persons from such danger. 

In these circumstances your employer may not pay you for the absence, but should not treat it as unauthorised absence or dismiss you as a result. If that does happen, you should be entitled to pursue a claim in the Employment Tribunal. Any claim to an Employment Tribunal will be subject to the risk of litigation. However, faced with a potential legal dispute, the employer may be more accommodating.

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 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 position in relation to employee rights is developing at an unprecedented rate. The position may change daily and therefore the information above will be subject to change as matters update. 

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.

Guidance to employers says that those who follow advice to stay at home and who cannot work as a result will be eligible for statutory sick pay (SSP), even if they are not themselves sick.

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.

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. 

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. Support is being set up, and we will continue to update this page as the situation develops and lobby governments and the NHS across the UK to make sure this support is available. We are also contacting major supermarkets and food banks to ensure they are aware of the needs of the CF community and can provide what you need.

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).

Here is a series of steps to 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. 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.

5. Food parcels

The Government has begun to send out food parcels (example pictured) to those who have been advised to shield and who have said they need help to get food and essential supplies. Initially, we understand these are going to people in England who registered on the NHS website and said they needed help and support with shopping, and similar schemes are now being set up across the UK (see Support across the UK, below, for details). We are working with government departments to ensure that, when planning food parcels, they understand the diet needs of people with cystic fibrosis.

6. 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.

Support across the UK

If you are in England, it's important that you register for help and support on the Government's website as soon as possible.

If you are in Wales, you will shortly be able to register for the vulnerable persons scheme set up by the Welsh Government. You can read about the Welsh Government’s Safe Help scheme here.

If you are in Scotland, the Scottish Government has published details of support available in local areas to arrange for food and medicine deliveries, and other support services. Details can be found here.

You can also take a look at this Q&A which explains how agencies are gearing up to support you.

We also commend @viralkindscot on a fantastic community led initiative.

If you are in Northern Ireland, the government has also set up a scheme to provide support with food for vulnerable people, details can be found here. General information can be found here. On 5 April, Communities Minister Deirdre Hargey announced that a new weekly service which will see 10,000 food boxes being delivered to the most vulnerable in society during the COVID-19 lockdown.

We part-fund an advice scheme in Northern Ireland – please contact Advice Space Belfast for advice on benefits.

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.

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.