We know that the recent outbreak of a novel coronavirus (COVID-19) is a significant concern for many patients and families affected by PCD. This is a developing situation and advice may change but we have tried to answer some of your concerns below.
Click here to go back to the main Covid-19 page.
We are delighted to share the Q&A session held with our PCD specialists on 27th June at our AGM is now available for download here.
This includes an update on facemasks.
I am an adult with PCD, should I be ‘shielding’, self-isolating or social distancing?
On 22 March 2020, the Prime Minister, Boris Johnson, announced that the most vulnerable groups would be advised to ‘shield’. Social shielding is a way to protect people who are at greatest risk of serious complications from COVID-19. It means staying at home for a minimum of 12 weeks and to avoid any face-to-face contact. The PCD clinicians recommend that all people with PCD should remain at home for at least 12 weeks and to shield. According to government recommendations, other members of the household should practise rigorous social distancing. Full guidance on shielding is available on the Government website, here.
Will I/my child with PCD get a letter confirming the need to isolate?
Although many PCD patients will receive letters confirming their status as extremely vulnerable, not everyone will receive one. All PCD patients are classed as extremely vulnerable and regardless of receiving a letter should follow the advice from the National leads of the children and adult PCD centres in England to shield for at least 12 weeks. The complete statement from the National leads of the children and adult PCD centres in England is available here.
If you require a letter for your employer and have not received one, please direct them the statement on the website. If this is not sufficient, then contact your specialist PCD team. If you require further assistance in this matter, please email us at firstname.lastname@example.org
Should I be wearing a mask?
Current government advice is that masks have minimal effect on the spread of Covid-19, except for a small tangential benefit that it might stop you from touching your face.
There is some evidence that they in fact encourage face touching, to readjust or move the mask.
Where masks can have a beneficial effect is in reducing the spread of those who may have the virus but be asymptomatic. This especially applies to front line care workers and the NHS is possibly facing critical PPE shortages in the coming weeks.
For these reasons we recommend not worrying about masks as they are not shown to reduce your risk of contracting the virus. Instead focus on washing your hands regularly, avoid face touching and keeping fit through home exercise.
BBC article on wearing masks [accessed 01/04/2020]
Can I still work?
Given that people who have PCD are now requested to remain at home for 12 weeks and to shield themselves from any exposure to COVID-19, we recognise that this presents complications for many people who are unable to work from home. If you have a job that allows you to work from home, then you should continue to work, as long as you are well enough. However, if you are unable to work from home, it is important to follow government advice and not go to work. Your employer should be able to support you in doing this. If you are self-employed or worried about your income during this time, the government are making claiming benefits more accessible. You may be eligible to claim for Employment Support Allowance because you have a health condition that means you are unable to work at this time. Please refer to the ‘Employment and Financial Support’ section of the government website, here.
My child has PCD, what should I be doing to keep them safe?
We realise that this is a worrying time for parents of children with PCD. The government shielding guidelines also apply to children and therefore your child should remain indoors for 12 weeks. As carers you are advised to strictly follow the government’s social distancing advice and to minimise how often you go outside. If you are able to work from home, you should do so. The government guidelines for parents of extremely vulnerable children is available, here.
I/my child has a clinic appointment soon. Should we go?
We are aware that hospitals are identifying ways of avoiding unnecessary exposure to hospitals, where possible. This may mean your clinic is done virtually using video-conferencing software, by telephone or that your clinic is postponed. If your appointment is in the next week, you should contact the clinic to check whether it is still going ahead. If not, then, you should wait a while to see if the clinic contacts you, so that the clinic staff do not become overloaded with requests. You should also think about whether you feel you need to be seen – if you are not managing your PCD very well, do not delay your appointment. Urgent face to face appointments will still occur when urgently needed / start of home iv antibiotics. Hospitals will maintain strict hygiene standards and will be careful to minimise the risk to you/ your child if you need to physically go in.
I am not well and think I may have a chest infection, what should I do?
It is very important not to delay seeking advice or seeing your doctor if you are unwell. Firstly, you should make sure that you have a two week ‘rescue pack’ of antibiotics on hand, and you should start these if you think you are getting a chest infection or symptoms such as cold symptoms, flu-like symptoms, a fever or a new/worsening cough. You may also want to ask your GP to prepare you some pre-filled sputum testing forms and pots, so that you can send off a sputum sample as soon as you begin feeling unwell. It may be worth discussing with your GP whether there are changes to the sputum sample drop off system during this time.
As a high-risk group, those with PCD should make sure they are especially careful to manage their lung health at this time. If you think you are not managing an exacerbation, do not put off getting further advice or treatment because of concerns about COVID-19.
If you do develop any of the symptoms, you need to go to the NHS 111 website for advice as to whether testing for coronavirus is indicated. Testing for coronavirus is accessed via the 111 service and not via your GP or your specialist hospital. After you have sought advice please advise your specialist hospital straight away, as you may require further treatment, such as a face-to-face consultation, an arranged admission or home IVs.
What happens if someone else in our house gets Covid-19?
Anyone with a high temperature or new continuous cough must stay at home for 7 days from when their symptoms first started. Anybody who is living with the person who has become unwell must also stay at home and not leave the house for 14 days. If there is any adult with, or a child with PCD who also has significant underlying chest problems in such a household, arrangements should be made for them to stay with friends or family until this home isolation period has finished. If this is not possible, then follow the specific NHS advice for if you have a vulnerable person living with you.
How do I get my medicines?
This may vary from region to region. Some hospitals are recommending keeping a ‘buffer stock’ by keeping at least two to four weeks’ worth of medicines at all times and requesting your repeat prescription ahead of your supply running out, in order to give pharmacies enough time to respond. You might also need to call your usual supplier of your prescription to ask whether there are changes to their services and to discuss how you will obtain your medicines. As PCD patients are advised to remain indoors, it is important to make sure you have identified how you will continue to get your medicines.
I am looking for legal or financial advice
If you think your employer may have unfairly dismissed you or otherwise treated you unlawfully following the outbreak of COVID19 you might be able to access advice via your local Citizens Advice Bureau or Law Centre. Though many advice centres may be struggling they will do their best to answer your queries. There are changes to eligibility for claiming benefits. You can find out more information about this on the government website. You can also speak to citizens advice about what you may be entitled to, or look at the Money Advice Service. Please note that there are many sources of advice and these are just some examples.
Other useful information
ELF has created a COVID-19 Q&A which covers a wide range of questions that we have received from the public over the last few weeks. [accessed 09/04/2020]
Leeds hospital have released a statement: http://www.chestmedicine.co.uk/pcd/
Click here to go back to the main Covid-19 page.
Last Updated: 10th July 2020 by Katie Dexter