Updated: 16/09/2020

The PNH service continues to follow the Department of Health advice. If you were shielding or self-isolating the current guidelines are that you are now able and encouraged to carry out activities of daily life such as shopping and work. We advise whilst doing this to take extra precaution and contact the PNH team for any questions or concerns.

The guidance for the clinically extremely vulnerable is that shielding has been paused from 1st August 2020 in England. This means:

  • You do not need to follow previous shielding advice
  • You can go to work as long as the workplace is COVID-Secure but should carry on working from home wherever possible. If you have any specific queries about risk assessments we are happy to assist and go through these with you.
  • You can go outside as much as you like but you should still try to keep your overall social interactions low and in keeping with current government guidance for your area You can visit businesses, such as supermarkets, pubs and shops, whilst keeping 2 metres away from others wherever possible or 1 metre plus other precautions
  • You should continue to wash your hands more frequently than usual and maintain thorough cleaning of frequently touched areas in your home and or workspace
  • Wear a face covering in shops, public places. Wearing a face covering is mandatory when attending all hospital appointments.
  • Children are encouraged to return to school. Individual circumstances can be discussed with the PNH team or your GP.

In the current time of publicity about the infection with Coronavirus, we kindly ask you to look at this information before contacting the PNH National Service, so that we can better address your remaining questions.

The guidelines are being updated regularly so please refer to current government guidelines in your area, these might change due to local lockdown rules or change in policy.

This is for all patients with PNH whether they are on treatment or not.

Key Points:

  • Make sure you have a thermometer
  • Take your medication as prescribed -please check you have enough supply
  • If you have a temperature of 38°C or over, contact the PNH National Service:
  • If you are a Leeds patient:
  • Office hours: 0113 2068625, out of hours: 07920535918
  • If you are a Kings College Hospital patient:
  • Office hours: 020 3299 3520 / 1039, or if urgent 07623 904 512 and request pager number KH 7684, out of hours: 020 3299 9000 ask for haematologist on-call.
  • If you have symptoms of PNH such as black or red urine, please contact us.

In addition: if you are on a complement inhibitor (eg. eculizumab, ravulizumab or a clinical trial drug) it is important that:

  • Your treatment is NOT to be interrupted.
  • You will need a full course of ciprofloxacin (10 days of 500mg bd), not just the two rescue doses that we have prescribed previously. This is to be used after contacting, and being instructed to by the PNH Service. This is to increase cover, you also need to contact your PNH team if you are unwell.
  • Do not take paracetamol for a high temperature unless instructed to do so by the PNH Service.
  • Respiratory symptoms definition: sore throat, cough, shortness of breath.
  • Soliris is licensed only if administered by a health care professional. So unfortunately we are unable to facilitate self-administration.
  • Please note: If you are a patient at Kings College Hospital please contact the team as usual, and the team will provide advice and assessment.

Patients who are immunocompromised and/or on complement inhibition

  • Patients who are immunocompromised, for example patients taking treatment for aplastic anaemia (such as ciclosporin, eltrombopag, danazol or oxymetholone, post ATG or stem cell transplantation), and patients who are treated with complement inhibitors (such as eculizumab, ravuluzimab or a clinical trial drug) need to protect themselves, to reduce the risk of being infected.

Please do not hesitate to contact the PNH team for further advice if needed, we understand the complexity and how difficult it is for each individual.