Please visit our website and social media channels regularly for updates.
If you suspect you have COVID-19
What should you do if you show symptoms?
- Speak with your ILD team first if you have symptoms of COVID-19.
- Do not visit your specialist hospital or GP surgery without an appointment.
- If you are showing mild symptoms including a fever and cough, continue with your anti-fibrotics as prescribed and take paracetamol for your fever.
- If your symptoms progress or you become increasingly breathless, call NHS 111 or visit the NHS 111 Coronavirus site.
Extremely vulnerable - latest advice on shielding
As of today (June 1), people classed as extremely vulnerable - which includes those with PF - who have been shielding for 10 weeks or more have updated their advice. Government guidelines now say that you can leave your home once a day and meet up (whilst observing social distancing) with one other person outside your household. This applies to England and Wales only.
At the same time, several experts have expressed concern at the easing of restrictions. Some believe that this is too early and that those who are extremely vulnerable should continue to shield until the number of Covid-19 infections reduce even further.
We understand that you may be confused by these conflicting messages. Many of you will not feel comfortable to venture outside of your home just yet, while others may welcome a change of routine. If you do decide to follow this new advice, we would urge you to continue to be vigilant by:
Maintain strict social distancing
- Avoid crowds and crowded places (like super market queues)
- If you touch hard surfaces such as gates, railings or benches outside your home use hand sanitiser immediately afterwards
- Maintain high hygiene standards, washing your hands frequently
- Avoid touching your face
Returning to work
Advice on issues relating to returning to work is changing extremely quickly for all the nations. We recommend you regularly visit the following pages:
• Guidance on shielding for people considered extremely vulnerable
• Guidance on working safely
• ACAS – the Advisory, Conciliation and Arbitration Service
I have pulmonary fibrosis (PF)
Am I expected to return to work mid June (after the 12 week period the shielding letter covers expires)? Where do I stand with my employer?
People with PF have been advised to follow very strict guidance until mid June. We recommend you follow the guidelines until mid June. We expect people who are shielding will receive updated advice from the government before mid June.
At APF we are working to find out more about your next steps.
The government has said people should return to work only if it is considered safe to do so. All guidance ultimately suggests to keep up regular contact with your employer.
If your employer expects you to return to work and you feel that conflicts with shielding advice it is recommended you talk with your employer.
You can raise a serious issue or request by raising a formal complaint.
Check out ACAS advice here
I live with someone with pulmonary fibrosis
Should I return to work now?
There is guidance here on how to live with someone who is shielding.
We have lots of practical advice here
The government has said only to return to work if it is safe to do so. Your employer will be given advice on how to implement safety measures to keep staff safe. Read them here.
Can we visit friends and family and do hobbies?
People who are shielding have been advised to follow very strict advice until mid June. We recommend people with pulmonary fibrosis follow the guidelines until updated advice is shared for people who are considered extremely vulnerable.
Will my husband who has PF be expected to return to work after mid June?
We are expecting new advice to be released for people who are considered extremely vulnerable by the government over the coming weeks.
We are shielding as a family. Will my kids have to go to school?
No. Families who have someone at home who is considered extremely vulnerable, will be offered a choice as to whether you feel it is safe for your child to return to school or not.
Receiving my letter
Am I considered extremely vulnerable and should I receive a letter?
In England and Scotland people with pulmonary fibrosis have been formally recognised as being ‘extremely vulnerable’ by their respective NHS services.
This means if you are unable to rely on friends or family to help you with shopping, getting medication or other care and support you have a priority status. This is particularly important for booking a timely online shopping slot. You can register for government support here.
Many specialist centres and GP’s in Wales and Northern Ireland are choosing to follow the guidance from NHS England. However, because there is less formal guidance for your ILD teams in these regions, less people with pulmonary fibrosis may receive a letter. Patients are now encouraged (w/c 13th April) to contact their GP for their letter.
What can I do if I don’t have a letter?
We understand how frustrating it feels to know you meet the criteria of being ‘extremely vulnerable’ and then not receive the timely advice and support that has been promised. At APF we are working on your behalf to rectify this.
There are three bits of key information in each letter:
- Practical advice to support with daily living
We recommend you go to your local council website which has set up specialist services to help you. You don’t have to have received a letter to access this support. Your local council can help with meals, medication and accessing benefits no matter where you live in the UK.
Other support with food shopping delivered to your door:
- How to stay well emotionally
You can take a look at our wellbeing page where we offer a range of support and advice.
What can I do if I’m still worried about not receiving my letter?
If you remain worried about not receiving your letter, you can email us on firstname.lastname@example.org with details of your consultant and specialist centre. We will not respond immediately, but we will follow up and share any updates with you that we receive.
What happens if I’m admitted to hospital?
So far in the UK, it remains very rare for anyone with pulmonary fibrosis to be admitted to a COVID-19 ward.
We strongly recommend you complete our medical information form and make sure this is with you plus any recent letters from your ILD Teams if you are taken in to hospital. Do use the back of the form to add any additional information that you feel is helpful and specific to you.
It’s a good idea to think through what the first 12 or 24 hours might look like if you went to hospital. Questions to ask yourself or discuss with a loved one:
- Once I know where I’m going to be admitted to, what will I need to take with me?
- Who needs to know and how can I tell them?
- Who can travel with me/take me?
We know that some people living with very advanced pulmonary fibrosis may choose to call their local hospice if they are already accessing support from the palliative care teams instead of 111. It’s a good idea to let family or friends know your wishes.
Medications and coronavirus
I’m worried I won’t be able to get hold of my prescriptions or that there will be a shortage or issues with the supply chain for drugs.
- There are no issues with the supply of drugs to fulfil prescriptions. The companies producing the two anti-fibrotic drugs have assured the European IPD Federation (EU-IPFF) and APF that supplies will continue uninterrupted.
- Medications for other conditions should be requested in the usual way and will be sent to your nominated pharmacy. Expect at least 24h before collection / delivery because pharmacies are working under pressure.
ACE Inhibitors – I have been taking this medication for hypertension. There have been stories that it can make Covid-19 worse. Is this true?
- Currently, there are no data to support this and the advice is to continue taking your usual medication.
Will clinical trials continue?
- Most clinical trials have been put on hold. In general, there is no recruitment of new patients to clinical trials at present. We will post more information about clinical trials once the COVID-19 crisis has passed.
Will I be able to get hold of oxygen as normal?
- There are no issues with the supply of oxygen.
- You may want to speak to your supplier for reassurance:
- 0808 143 9991 for London
- 0808 143 9992 for the north-west England
- 0808 143 9993 for east Midlands
- 0808 143 9999 for the south-west England
Baywater Healthcare covers Yorkshire and Humberside, west Midlands and Wales.
- 0800 373 580
BOC covers East and North-East England and Northern Ireland.
- 0800 136 603
- 0500 823 773 for the south of England.
- 0800 833 531 for Scotland
I was borderline for oxygen therapy at my last appointment. If I get worse and need oxygen will I be able to get it?
- No, an oxygen assessment is unlikely to be undertaken during the COVID-19 crisis.
- If you are feeling more breathless than usual, we suggest you contact your ILD clinical nurse specialist and your GP. Keep phoning until you have a response.
- There are many things you can do at home to help to improve breathlessness, such as using a handheld fan, breathing exercises and upper chest exercises. Read more on breathlessness.
What happens if I have an exacerbation during the pandemic? Will hospitals be able to cope with an admission?
- Yes. This usually requires admission to hospital for treatment. Rest assured that you will be admitted if needed.
When will testing be available and will testing of vulnerable people like me be a priority?
- Options such as home testing kits are in development. Please check on the government websites for further updates.
- If you are advised to go to hospital because of symptoms of COVID-19, you will receive a test.
Is there any treatment for COVID-19?
- Clinical trials are being started around the world in an effort to find treatment for COVID-19 infection.
- You may be asked to take part in a trial, here in the UK. You’ll be given information by your doctor so you can make an informed decision.
What can I do to help others?
- Contact your support group organiser and offer to call members of your support group to ‘check in’ and stay in touch
- Share any skills you have to help others stay in touch with friends and family online
- Encourage people to get online and follow APF on social media
- Share your tips on how you are keeping busy, teach others a skill or share a joke
We hope you have found this content useful
Our team is working hard on a daily basis to provide the latest and most up to date health advice concerning Coronavirus (COVID-19).
This page was originally published on 18 March 2020, and was last updated on 1st June 2020. This advice is updated as new information becomes available.