For patients and families
We know that COVID-19 has been a significant concern for many patients and families affected by PCD. It is recommended that all adult PCD patients receive their COVID-19 vaccination as soon as possible. If you have PCD you are considered clinically extremely vulnerable and are entitled to the vaccine regardless of your age. You can book your vaccine here. For children there is no current vaccination programme but if this changes you will be advised by your PCD centre.
To help us understand how COVID-19 affects PCD patients, we have been working with a research team at the Institute for Social and Preventative Medicine (ISPM) at the University of Bern, Switzerland. People can join anytime if they have or are suspected of having PCD. Participants receive a detailed questionnaire at the start, and then short weekly questionnaires to monitor the progression of symptoms. The results are available online and we hope they will help improve the health of people with PCD.
Advice is changing regularly but we have tried to answer some of your concerns below:
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-conference 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 or you are starting IV antibiotics at home. 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.
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, 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 COVID-19 is required. Testing for COVID-19 is accessed via the NHS website not via your GP or your specialist hospital. After you have sought advice, please talk to your specialist hospital straight away, as you may require further treatment, such as a face-to-face consultation, an arranged admission or home IVs.
Advice for this situation is constantly changing. Please follow the latest government advice on what to do by reading this link.
If you think your employer may have unfairly dismissed you, or otherwise treated you unlawfully following the outbreak of COVID-19 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 the Citizens Advice Bureau 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:
There are some places where you must wear a face covering by law unless you are exempt or have a reasonable excuse. See latest government guidelines here.
If you find wearing a mask difficult, we advise you talk to your clinical nurse specialist.