As the current COVID 19 situation evolves, guidance and links to resources will be updated.
As you may have seen, the Government has published guidance on shielding and protecting people defined on medical grounds as extremely vulnerable – following the recent additional COVID-19 restrictions announced. It replaces previous guidance on shielding. The guidance is set out in 2 parts:
- Updated advice on protecting the clinically extremely vulnerable (CEV), based on local COVID alert levels. This advice is less restrictive than previous shielding advice
- Updated shielding advice that is more targeted and will only apply in some of the worst affected areas and only for a limited period of time. Here, the Government only advises to follow shielding advice if you receive a new written shielding notification
The advice says that the local and national COVID-19 restrictions in place, including the COVID alert levels, reduce the need for shielding and offer protection from the virus. In future, the Government says it will only reintroduce formal shielding advice in the very worst affected local areas and for a limited period of time. This will only apply to some, but not all, very high alert level areas and will be based on advice from the Chief Medical Officer.
The guidance remains that all children should attend school, unless they are both CEV and in a very high COVID alert level.
Updating shielding guidance
What level of advice should you follow
- If you are required to travel into an area at a different local COVID alert level (for example to go to work or school), you should follow the guidance for whichever area has the higher alert level
Socialising inside and outside the home
- Continue to maintain strict social distancing and try to keep the number of social interactions that you have low
- Continue to observe strict social distancing with anyone outside of your household or support bubble
- Try to reduce the amount of time you spend in settings where you are unable to maintain social distancing, or where other people’s activities may reduce the likelihood of individuals maintaining social distancing
- Everyone is currently advised to work from home where possible
- If you need support to work at home or in the workplace you can apply for Access to Work – which provides support for the disability-related extra costs of working that are beyond standard reasonable adjustments an employer must provide
- If you cannot work from home, you can still go to work. However, if you live or work in an area where formal shielding advice has been put in place, and you have received a new shielding notification informing you of this, we advise that you do not go to work
- The UK Chief Medical Officers have issued a statement on schools and childcare reopening which states that there is a very low rate of severe disease in children from COVID-19
- All pupils and students should continue to attend education settings at all local COVID alert levels unless they are one of the very small number of pupils or students under paediatric care and have been advised by their GP or clinician not to attend an education setting
- In the very high alert level, clinically extremely vulnerable children are advised not to attend school. Your school will make appropriate arrangements for you to be able to continue your education at home
Going to shops and pharmacies
- The NHS Volunteer Responders programme is available to help support those who need it. Volunteers can collect and deliver shopping, medication and other essential supplies. Call 0808 196 3636 between 8am and 8pm, 7 days a week to self-refer or visit www.nhsvolunteerresponders.org.uk for further information
If you require additional care and support
- Providers of social care and medical services are making every effort to ensure services remain open and as safe as possible
- You should continue to seek support from the NHS for your existing health conditions. You can access a range of NHS services from home, including ordering repeat prescriptions or contacting your health professional through an online consultation
- You should continue to access support from local charities and organisations, as well as NHS Volunteer Responders.
- In the very high alert level, you may be eligible for extra care and support from your local authority. You will receive further information about how to request support from your local authority in the formal shielding notification letter we will send to you if your area is advised to shield
Definition of clinically extremely vulnerable groups
There are 2 ways you may be identified as clinically extremely vulnerable:
- You have one or more of conditions listed below, or
- Your clinician or GP has added you to the Shielded Patient List because, based on their clinical judgement, they deem to you be at higher risk of serious illness if you catch the virus
People with the following conditions are automatically deemed clinically extremely vulnerable:
- Solid organ transplant recipients
- People with specific cancers:
- People with cancer who are undergoing active chemotherapy
- People with lung cancer who are undergoing radical radiotherapy
- People with cancers of the blood or bone marrow such as leukaemia, lymphoma or myeloma who are at any stage of treatment
- People having immunotherapy or other continuing antibody treatments for cancer
- People having other targeted cancer treatments that can affect the immune system, such as protein kinase inhibitors or PARP inhibitors
- People who have had bone marrow or stem cell transplants in the last 6 months or who are still taking immunosuppression drugs
- People with severe respiratory conditions including all cystic fibrosis, severe asthma and severe chronic obstructive pulmonary disease (COPD)
- People with rare diseases that significantly increase the risk of infections (such as severe combined immunodeficiency (SCID), homozygous sickle cell disease)
- People on immunosuppression therapies sufficient to significantly increase risk of infection
- Women who are pregnant with significant heart disease, congenital or acquired
- Other people who have also been classed as clinically extremely vulnerable, based on clinical judgement and an assessment of their needs. GPs and hospital clinicians have been provided with guidance to support these decisions
“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 firstname.lastname@example.org
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.