Having spent 12 weeks in a degree of isolation, because of the risks of Covid-19, the advice is now changing. Whether you have been in full shielding or you have chosen to shield because of the vulnerability of a child, teenager or adult with a single ventricle heart, stepping out of isolation is daunting. For some there is nervousness about the changes, for others there is a feeling of joy that they can get out and about more.

The aim of this document is to give you the facts as we know them, to answer some of your questions and to help inform the choices you as individual members will make moving forward. Always remember that you can contact your cardiac team for more individual advice. All of the information below has been gained from researching advice and instructions from  the British Congenital Cardiac Association and the Congenital Cardiac Clinical reference group, the Department of Education and the Government or devolved authorities Covid-19 information and advice.

The Science.

When the Covid crisis began there was little if any information about the risks to any members of the population. The first assumption was that the virus would affect the same populations as flu so anyone who received the flu vaccine was classed as vulnerable. The medical profession then created a list of extremely vulnerable people who should shield.

Complex congenital heart disease was in the Vulnerable group but not all patients  were placed in the extremely vulnerable group by their cardiologists. Adults with a Fontan heart, people waiting for a transplant and those who had associated lung disorders were told to shield. Some individual cardiologists and GP’s decided to support shielding in their patients and some devolved health services gave broad shielding advice. Of course in the end the whole country was put on lockdown because of a sharp rise in the national infection rate.

June 2020

The science is not complete but more information is now being seen. Today only one person in 1700 will have Covid-19 in the UK. That means that today your chance of meeting someone with the condition is low. If you want to know what the infection rate is in your part of the country follow this link https://www.bbc.co.uk/news/uk-51768274

Only 36 children in the UK have needed to be looked after in ITU to date, 5 children under 18 have sadly died, to our knowledge none of them had a congenital heart condition. The inflammatory response highlighted in the child population is extremely rare and there is no greater risk of this condition in the CHD community.

Studies coming out from Spain and Italy are showing that children with complex heart disease, without an associated immune deficiency, have a no higher risk of catching the condition than other children, if they have caught it they have recovered well. They do need to be managed by their cardiac team as well as the Covid team.

Adults with CHD have often been sweepingly included with the elderly group of patients with acquired heart disease but the data available today is showing that their risks are not as high as that group. Congenital heart disease studies coming out of Italy and Spain showed no greater risk to Fontan patients than the general population, although it has been agreed that more information is needed moving forward as numbers are very small. The British Congenital Cardiac Association has started a study to look at the UK experience.

The science is showing us that the risks are higher in the elderly, in men over 50, in people who are very over weight , diabetic or with high blood pressure and in the BAME community. Interestingly the Vitamin D levels in patients with Covid are low in a majority of cases. The reasons behind all of these risk factors are not completely known but it does help health professionals to target their advice and for the public to be more aware of the risk groups.

Reduce the risks of catching the virus.

No one stepping out of shielding is expected to return to the old way of living for some time. Below you will see all the different countries advice but the common factors are.

2 meter rule – The advice is to continue to remain 2 meters away from anyone outside your family group (bubble). Some shielding adults have been separated from their family within the same house so that can stop.

Being outside in the fresh air – we know that the risks of passing the virus are greatly reduced outside. Keeping 2 meters away from someone means that any risk of them passing the virus is small when out in the fresh air as the viral bugs move into the air. It is also clear that the bugs die more quickly if the weather is hot.

The new 1 meter + rule, in place where 2 meters distance is not possible, for example on public transport, require a mask to be wore or people to stand or sit back to back. For more details follow this link. https://www.gov.uk/government/publications/staying-safe-outside-your-home/staying-safe-outside-your-home

Returning to shopping, something that our teenage and adult members are keen to do, should only be done if social distancing is in place. Big stores with plenty of air and space between shoppers are going to be best. Online shopping, food and pharmacy deliveries will be halting later in the summer. (Some supermarkets have said they will try and continue to priorities online shopping if they can).

Masks – the wearing of masks will become more common, especially if the 2 meter rule is impossible. They do not protect you from others as they are not medical PPE but they may prevent you or another mask wearer from spreading an infection. 

Wash Hands – this is the most important piece of advice. We know that the virus can be picked up on your hands and then, if you touch your face, eyes, nose mouth, you can pick up the infection. Washing your hands all the time or using sanitizers and not touching your face is a key safety precaution. 

Outdoor clothing – we know that the infection can be carried on shoes or on clothes. It is good practise, if you have been shopping or gone to work or school, to change and wash when you get home.

Government Guidance

Stay alert. We can all help control the virus if we all stay alert. This means you must:

• stay at home as much as possible
• work from home if you can
• limit contact with other people
• keep your distance if you go out (2 metres apart where possible)
• wash your hands regularly

Do not leave home if you or anyone in your household has symptoms.

Exercise

Exercise is encouraged for everyone. Time out in the fresh air is good for your health but going for a walk, run or bike ride, away from other people, is good for the heart and the Fontan circulation. It is also good for your mental health. Everyone, vulnerable, shielded or just at normal risk should exercise, every day if possible. Keeping fit will help us all fight off any infection. Being outside, protected from the sun with the normal sunscreen, will also help our Vitamin D levels.

Social Interaction

The Government has said that our households are a bubble. We have been restricted to our bubble to keep the risks low. The new rules allow for a single person, or a single parent family to join their bubble with another bubble.

Moving on the rules will allow for one bubble to join with another bubble and to meet inside their houses. The dates for this change are different in different regions of the UK so watch for your regions updated advice.  This change would allow for grandparents to join with their family or for two households to join together. This will be very low risk if the two households have both followed isolation or distancing rules and neither household shows signs of the Covid infection. Families might like to invite grandparents or one other family group to join together.

Meeting with up to 6 friends in a garden or an open space is allowed but social distancing must be observed. Keeping close contact with others restricted to small groups reduces the risks of catching or passing on the virus. Take little steps as you move out of lockdown.

Return to School

The LHM team receive more questions about the return to school of their children than any other.

The BCCA are standing by the advice they set out at the beginning of the month. That children who have been are in the vulnerable group can return to school if the school have set in place the distancing regulations required by Government. https://www.lhm.org.uk/2020/06/12/covid-19-bcca-updated-practical-guidance-for-patients-parents-charities-and-support-groups-11-june-2020/

As shielding is stepped down children in that group join the vulnerable  group and should be able to follow the same rules as set out for the vulnerable group.

It is important that individual families seek the advice of their cardiac teams as they plan their way forward.

What we know less about are the rules that will be followed by schools as they open up in September. If the distancing rules are still in place all children with a heart condition should be able to return for the new school year. As we learn more we will be able to update our information.

Many Universities and Further Education Colleges are reviewing the way that they will provide their courses moving forward. We will again update members as soon as we learn anything new.

Return to work

Working from home is still encouraged where possible. The BCCA feel that it is safe for adults with a Fontan heart to return to the work place if the right distancing precautions have been put in place.

It is a company or work places responsibility to ensure that the work place is safe for its employees.

It is important that individual adult patients seek the advice of their cardiac team as they plan their way forward.

Time line for change across the UK

The four countries of the UK have slightly differing step down timings but the principles are the same.

England-  From 6 July, the government will be advising:

• you may, if you wish, meet in a group of up to 6 people outdoors, including people from different households, while maintaining strict social distancing
• you no longer need to observe social distancing with other members of your household
• in line with the wider guidance for single adult households (either an adult living alone or with dependent children under 18) in the general population, you may from this date, if you wish, also form a ‘support bubble’ with one other household. All those in a support bubble will be able to spend time together inside each other’s homes, including overnight, without needing to socially distance

From 1 August the government will be advising that shielding will be paused. From this date, the government is advising you to adopt strict social distancing rather than full shielding measures. Strict social distancing means you may wish to go out to more places and see more people but you should take particular care to minimise contact with others outside your household or support bubble. In practice this means that from 1 August:

• you can go to work, if you cannot work from home, as long as the business is COVID-safe
• children who are clinically extremely vulnerable can return to their education settings if they are eligible and in line with their peers. Where possible children should practise frequent hand washing and social distancing
• you can go outside to buy food, to places of worship and for exercise but you should maintain strict social distancing
• you should remain cautious as you are still at risk of severe illness if you catch coronavirus, so the advice is to stay at home where possible and, if you do go out, follow strict social distancing.

Scotland – We are advising people to continue to shield until at least 31st July. That is because, although infection rates are much lower than they were at the start of lockdown, we are not yet confident that it is safe enough to change our advice.

During this time we will continually review this advice and monitor Covid infection levels to make sure it remains the correct decision. We will continue to balance this against the harms caused by shielding. People who are shielding will continue to receive the support they have been getting, whether that be free weekly food boxes, access to priority supermarket delivery slots, pharmacy deliveries, or other support through Local Authorities.

However, we understand that it is not fair to continue to ask people to stay at home all the times, especially as restrictions are eased for everyone else. This is why we will be looking
for ways to gradually ease the guidance for shielding people if clinicians and scientists advise it is safe.

If you have been advised to shield and wish to go outside for exercise after 18 June, you should take the following precautions:

Go outdoors for a walk, wheel, run or cycle. We do not recommend that you take part in outdoor activities such as golf, hiking, canoeing, outdoor swimming, angling, etc. in the same way as the rest of the population can just now. You:

• Can go out on your own or with someone you live with
• Should maintain strict physical distancing, also known as social distancing, at all times, even if you live with the person you’re out with. This means keeping 2 metres (or three steps) away from other people at all times
• Should not meet with anyone you do not live with
• Should choose times and areas that are quiet, if you can
• Should wash your hands for at least 20 seconds as soon as you get back home

Wales – It is not expected that any further relaxation will be possible for this group for some time and so the Welsh NHS have committed to write again to those who are shielding by 16^th August.

Northern Ireland – From 6 July, and if the risk continues to be low, people who are following the shielding advice are able to meet up to six people outside of their home, as long as social distancing is strictly observed. 

If you are shielding alone, from 6 July you can also form a support bubble with one other household.  Where you form a bubble:

• social distancing is not required with the other household in your bubble; this will allow you to visit, stay over and spend more time with the second household
• the second household can be of any size; and 
• both households should not be part of more than one bubble and should continue to socially distance outside the bubble.

People who are shielding remain vulnerable and should continue to take precautions.  It is still best to stay at home as much as possible until shielding is paused.

Pausing of shielding guidance from 31 July, it is anticipated that shielding for extremely vulnerable people will be paused.

Researched and Written by Suzie Hutchinson – CE and Service Lead Little Hearts Matter

Reviewed by LHM’s Medical Advisors

Dr David Crossland, CHD Cardiologist the Freeman Hospital, Newcastle

Dr Paula Clift, Adult CHD Cardiologists, The Queen Elizabeth Hospital, Birmingham

Reference Points:

Government Briefing Monday 22^nd and Tuesday 23^rd June < Click

BCCA Updated Practical Guidance for Patients, Parents, Charities and Support Groups < Click

Coronavirus (COVID-19): shielding – a way forward for Scotland < Click

Wales: Guidance on shielding and protecting people defined as extremely vulnerable < Click

Northern Ireland: Guidance on shielding for extremely vulnerable people < Click