As the COVID 19 pandemic continues, guidance and links to resources will be updated. We recommend that you speak to your hospital consultant for medical advice relevant to you (as everyone is different).

Most Recent Government Guidance

The most recent Government guidance (01/04/22) for those defined as “clinically extremely vulnerable” is here.

There is different guidance available for people living in ScotlandWales and Northern Ireland.

COVID 19 Vaccination Effectiveness for PNH Patients

On 6 December 2021, the Aplastic Anaemia Trust hosted a webinar where Professor Peter Hillmen and Alexandra Pike from the Leeds research discuss the results of research about whether the COVID 19 vaccine is effective for PNH and Aplastic Anaemia patients.

The study found that after one dose of the Covid-19 vaccine, people with AA and/or PNH were less likely to mount an immune response than healthy volunteers. However, after a second dose of the vaccine, there was a large increase in the number of people who had an immune response to the vaccine which is great news for our community. The Lancet published a piece about this research on 30 June 2022 which can be read here.

Accessing a primary dose of the COVID 19 vaccine

Here’s the AAT’s webpage about accessing the third dose of the vaccine

Accessing a booster vaccine after your third COVID 19 vaccine

Check out the AAT’s information about accessing a booster vaccine after your third primary dose. Should you not have received a letter from your GP about this, please request a letter from your hospital consultant to take to a vaccine centre.

PNH National Service

The PNH National Service has provided guidance (22/09/21) about PNH and Aplastic Anaemia patients receiving the COVID 19 vaccination.

Cold Season Advice

The Aplastic Anaemia Trust (AAT) has a helpful Cold Season Advice webpage, which includes a webinar recording with Dr Austin Kulasekararaj from Kings where he speaks about the different between the third primary dose of the COVID 19 vaccine and the booster from 1.12 to 7.36.

PNH National Service Guidance

PNH National Service’s website (last updated on 22/09/21)

Employment

If you need a letter to evidence your medical condition to provide to your employer, please contact your local haematologist. Please also review the Government’s guidance on Protecting vulnerable workers during the coronavirus (COVID-19) pandemic.

Mental Health

Looking after your mental health is also very important. Listed below are some sources of more information and support:

Mental Health Foundation

NHS Every Mind Matters

This page has useful tips about coping with anxiety about getting ‘back to normal’

Give us a Shout – TEXT 85258 24/7 for mental health support

MIND – mental health charity

The Aplastic Anaemia Trust has published a list of resources recommended by the Department of Haematology at
King’s College Hospital, London

Travel Insurance Information

Information about making travel insurance claims as a result of COVID 19 can be found here

Other External Guidance

Please see here for guidance on PNH and Aplastic Anaemia and COVID 19 from the European Society for Blood and Marrow transplantation.

Research on COVID 19 and PNH

Scientific papers published on PNH and COVID 19: