Last updated: 27 March, 11:30
We know this is a worrying time for the cystic fibrosis 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.
The government recently released new guidance about social shielding for those who are considered ‘extremely vulnerable’ to COVID-19. This is being followed by text messages and letters to those in this group, and we expect some, and possibly all, adults and children with CF to receive letters during the week commencing 24 March. If you do not receive a letter and think you should, please 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 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, there are some useful sources of emotional wellbeing support from the Mental Health Foundation and information for children on Place2Be.
All schools in England, Wales and Scotland will remain closed until further notice from Friday 20 March, except for the children of key workers and children who may be at risk away from school. Further information about who is included in this 'at risk' category is expected soon. If you are a key worker and you have a child with CF in your household, please speak to your local CF centre.
Schools in Northern Ireland will close on Monday 23 March, with the First Minister announcing that they will be exploring "how schools can continue to be a base for the education of children whose parents are health service staff or other key workers such as the blue light services."
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 cystic fibrosis 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 the 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 this 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.
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 whilst 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 receive 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:
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 Allowance, New-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.
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 Allowance, New-style Employment and Support Allowance and/or Universal Credit. However please seek specialist advice before making any claims.
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 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.”
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.
As of Tuesday 17 March, face-to-face assessments for all claimants on disability benefits will be 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.
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.
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.
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.
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 will continue to 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 cystic fibrosis 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 cystic fibrosis 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 we are pushing devolved governments in Wales, Scotland and Northern Ireland to act quickly to set up similar support.
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. Accept a food pack
It’s likely that supermarkets will be asked to offer food packs for those in most need. If you can’t get an online or local shop delivery and can’t get anyone (a friend, family member or volunteer) to deliver your shopping, it may be a good idea to accept a food parcel if you are offered one. We are working with government departments to ensure that, when planning food parcels, they understand the diet needs of people with cystic fibrosis.
Morrisons have recently launched a box scheme, which is delivered via courier so doesn’t rely on delivery slots.
5. 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.
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, details of support available can be found here and you can read more about the initiative here.
If you are in Scotland, 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.
In you are in Northern Ireland, the government publishes information here.
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.
Self-isolating for 12 weeks is likely to be challenging for many, and we know many of you have understandable worries about how you and your loved ones will cope.
Take a look at the latest UK CF Medical Association guidance and Government advice on looking after your wellbeing.
Over the coming weeks, we will be sharing resources and services and ways to get involved.
Our youth programme will be offering increased online activities to support young people with cystic fibrosis.
Please do share your thoughts and ideas with us – we want to know how we can best support you.
If you need any further help, please contact our Helpline.