As the current COVID 19 situation evolves, guidance and links to resources will be updated.
“Please see below information – if we have new information it will be updated on http://www.pnhleeds.co.uk/ and also the Public Health England website (see below):
COVID-19 is a new illness that can affect your lungs and airways. It’s caused by a virus called Coronavirus. Washing hands for 20 seconds is central to the expanded public awareness campaign to prevent and slow the spread of Coronavirus (COVID-19).
The symptoms of Coronavirus are:
These symptoms do not necessarily mean you have the illness. The symptoms are similar to other illnesses that are much more common, such as cold and flu.
Some people will be more vulnerable than others of course, and most patients with PNH are classified as high risk ie vulnerable, however the risk of contracting COVID 19 will be more or less the same as someone else of your age and health status.
The difficulty is that becoming infected may result in an exacerbation of PNH disease and symptoms.
We would advise that you:
How to avoid catching or spreading coronavirus
wash your hands with soap and water often – do this for at least 20 seconds
Guidance for all people about possible infection with COVID-19, including when you should seek further medical advice is summarised here.
[The Kings PNH team] is here to help and advise so please do not hesitate to contact [them] – [they] may not be able to get straight back to you so [they] would appreciate you calling ONLY in an emergency and putting URGENT in email headings so [they] can prioritise appropriately"
“People classed as clinically extremely vulnerable are advised to take additional action to prevent themselves from coming into contact with the virus. If you’re clinically extremely vulnerable, you’re strongly advised to stay at home as much as possible and keep visits outside to a minimum (for instance once per day).
This is called ‘shielding’ and the advice is now updated:
The Government is currently advising people to shield until 30 June 2020 and is regularly monitoring this position."
The PNH National Service has advised that patients should take advice from their specialist with regard to changing your behaviour with regard to shielding (or whatever you have been advised to do) as everyone is affected by PNH very differently and no one size fits all. Please refer to their website here or contact them directly.
As of 30 March 2020, the Government provided Guidance on shielding and protecting vulnerable people defined on medical grounds as extremely vulnerable from COVID-19.
Subject to the PNH National Service's guidance, If you consider yourself to fall within the “extremely vulnerable" category (not all PNH patients automatically do) and have not received a government letter confirming this and need one in order to access certain services i.e. supermarket delivery slots, we would recommend you contact your local haematologist and ask them to submit your details to NHS Digital who compiled the “extremely vulnerable" list.
Registration on Government Website as Extremely Vulnerable
Register here if you have a medical condition that makes you extremely vulnerable to coronavirus. For example, you’ll be able to ask for help getting deliveries of essential supplies like food.
If you’re not sure whether your medical condition makes you extremely vulnerable, register anyway.
This service is free. You can register yourself, or for someone else.You will need your NHS number to do this.
The NHS will be informed of your registration and will need to confirm whether you fall within the “extremely vulnerable" category.
If you need a letter to evidence your medical condition to provide to your employer, please contact your local haematologist.
Please also remember to look after your mental health at this time, please see here for more information
Public Health England has also published guidance here.
The Aplastic Anaemia has published a list of resources recommended by Kings College London Hospital here
The Aplastic Anaemia Trust has arranged an interactive and friendly Q&A via Zoom with Maggie's lead psychologist Lesley Howells on Thursday 30 April 2020 at 16.00 with the focus on mental wellbeing at this very challenging time. Please book a place here and send through a question or share any concerns beforehand to email@example.com
The Aplastic Anaemia Trust's most recent interactive Q&A with a haematology specialist from King's College Hospital, Dr Shreyans Gandhi, aimed at aplastic anaemia and PNH patients took place on 31 March 2020. The transcript of key points is available here.