This page will be updated regularly with the latest and most accurate information relating to your health and COVID-19.
LAST UPDATE: 07/01/2021
We want to help you during this difficult time. Cardiomyopathy UK takes the health and emotional well-being of our community very seriously. This page will keep you up-to-date with the latest information and advice regarding COVID-19 and how Cardiomyopathy UK is able to support you.
We are working closely with our network of healthcare professionals to ensure that the specific impact of the pandemic and of COVID-19 on people with cardiomyopathy and myocarditis is understood. We are also coordinating our work with other charities and clinical organisations as well as providing feedback to the government as the situation develops.
The government is currently rolling out a national vaccination programme. This programme is based on a prioritisation of clinical need. You can read more about how different groups have been prioritised here
It is the charity's understanding that people with cardiomyopathy will be in the "underlying health conditions" category (no. 6 on the government priority list). This is unless they have additional clinical needs that put them in the higher category of extremely vulnerable people who have been "shielding" during the pandemic (no.4) or they are placed in a higher category due to their age of other factor such as their work.
This programme may change over time and there is likely to be regional variations in when people will be offered the vaccination that are due to logistical issues rather than clinical need.
At this stage there is no evidence that one type of COVID-19 vaccine (Pfizer, Moderna, AstraZeneca/Oxford) is better or worse for people with cardiomyopathy. The charity encourages anyone to accept the vaccine that you are offered.
There is limited information on COVID-19 and its effects on the heart, but there is no evidence that people with cardiomyopathy are more likely to be infected.
However, individuals with cardiomyopathy or myocarditis may be at increased risk of developing a severe illness should they contract the infection. As we cannot yet identify those individuals with cardiomyopathy or myocarditis who are highest risk, we recommend that anyone with a diagnosis of cardiomyopathy or myocarditis follow current advice from NHS England (NHSE) and Public health England (PHE) relating to “vulnerable people”.
At the start of the "lockdown," the Government published a list of underlying health conditions that would make an individual especially vulnerable should they be infected with coronavirus (COVID-19). People with these conditions have been contacted by the NHS and advised to take measures to shield themselves from the rest of society to reduce their chance of exposure to and contraction of the COVID-19. Advice for this group of individuals was updated in June and can be found here (https://www.nhs.uk/conditions/coronavirus-covid-19/people-at-higher-risk/advice-for-people-at-high-risk/)
Cardiomyopathy and myocarditis are not listed as one of the underlying health conditions except for when an individual with these conditions is pregnant. Read more here: (Guidance on shielding - Gov UK)
Although people with cardiomyopathy or myocarditis are not considered to be especially vulnerable (unless they are pregnant or also have any of the other underlying conditions listed by the Government) it is still important that people with these conditions follow the advice for “vulnerable” people.
At this stage we have insufficient evidence to say that there is an increased risk of myocarditis recurrence following infection with COVID-19. We recommend that you follow current advice from NHSE and PHE on social distancing measures.
There is currently no good evidence that taking ibuprofen makes COVID-19 infection worse.
Nevertheless, until we have more information, take paracetamol to treat the symptoms of Coronavirus, unless your doctor has told you that paracetamol is not suitable for you.
If you are already taking ibuprofen or another non-steroidal anti-inflammatory (NSAID) on the advice of a doctor, do not stop taking it without checking first.
There is no evidence to support the suggestion that ACE inhibitors and ARBs cause harm in context of the coronavirus. In accordance with international guidance, we recommend that patients should continue with their usual therapy including ACE inhibitors and ARBs. Abrupt withdrawal of these medications may be dangerous or may complicate an underlying heart condition.
Individuals taking immunosuppression may be at increased risk of severe illness should they contract the coronavirus (COVID – 19). However, discontinuation of immunosuppression is potentially dangerous. In individual cases, your consultant may adjust your dose if it is appropriate to do so. We recommend that you follow current advice from NHSE and PHE strictly on social distancing measures.
We do not have any data to show that any cardiac medication makes you more likely to be infected with COVID-19 or that they make the infection worse. You should continue with your medical therapy as advised and stopping them may cause harm.
If you have symptoms that would be consistent with COVID-19 infection including a high fever and/or a new, continuous cough you should follow the advice from NHSE and PHE which is currently to self-isolate for 7 days.
Exposed family members should isolate for 14 days. You should not go to your GP practice, pharmacy or hospital but if you have symptoms that you feel you cannot manage, your condition is deteriorating or have not resolved after 7 days then please consult the NHS 111. In the event of a medical emergency call 999.
The charity has been able to adapt its current services and create new ways of supporting people with cardiomyopathy and myocarditis during the pandemic. You can find out more about our services at the bottom of this page.
We have also worked hard to ensure that our information on COVID-19 and how it affects people with cardiomyopathy and myocarditis is up to date by working with our network specialists and liaising with other organisations such as British Society for Heart Failure, British Cardiovascular Society, European Society of Cardiology and others.
As well as this, we are also working with clinicians to help them continue to provide support for their patients during the pandemic and will play a role in helping them to return to normal or at least the "new normal" in due course.
This is not correct. The DWP are paying all benefit claims as normal and are accepting new applications for PIP and all other benefits.
The face to face medical assessments that form a component of some benefit claims such as PIP and ESA have stopped and are to be replaced with telephone assessments instead. There has been no change in the application and payment process.
Unless you are working in a role that requires a medical fitness test (such as the armed forces, police, etc) you are not legally obliged to disclose your cardiomyopathy to an employer.
If your employer is asking the workforce if they have a condition that could put them at increased risk should they contract COVID-19 then you might want to consider whether you disclose or not to ensure that your employer can factor your health needs into any pandemic planning protocols.
You cannot be dismissed/sacked for having a cardiomyopathy as this is illegal. You would be protected under the Equality Act under the protected characteristic of disability. See our fact sheet for more on this: www.cardiomyopathy.org/day-to-day-living/the-equality-act
If you are self-employed you are entitled to make an application for a benefit known as Universal Credit. You might want to consider making an application sooner rather than later to ensure that if you do need to self-isolate you have the funds in place to allow you financially to do so. Make your claim here: www.gov.uk/apply-universal-credit
You may also want to take a look at the latest UK Government advice in regards to small businesses and how you can be supported with regards tax and business rates: https://bit.ly/2UhOq5D
I want to self-isolate, but my manager says that as I don’t have COVID-19 symptoms I have to come in to work every day. What are my rights?
Anyone post heart transplant would be categorised as being “high risk” if they contract the virus, therefore the UK Government guidance is clear; for your well being you must self-isolate.
Explain to your manager that you have a weakened immune system and that you are going to self-isolate in accordance with Government guidelines. Put this in writing to your employer too. Your employer cannot sack or discipline you for following Government advice. You are covered by the Equality Act (see previous answer) and these rights are set in law.
"SSP" is short for Statutory Sick Pay. SSP is a payment made to employees (you must work for an employer) who have been ill for at least 4 days in a row (including non-working days) and earn an average of at least £118 per week. You must inform your employer within 7 days of falling ill at the latest.
If someone is off work sick due to COVID-19 and are entitled to SSP it will be paid from the first day of sickness instead of the fourth as it was prior. SSP stops at 28 weeks and you cannot claim SSP if you are receiving Statutory Maternity Pay (SMP). Your contract of employment should tell you whether you are eligible for SSP.
You should be eligible to receive SSP (Statutory Sick Pay). Make sure that you check your contract of employment in the first instance as some employers pay above SSP. If you are not sure, speak with your employer / HR department to find out what you can expect to receive. See this page for more information on SSP, and the new ruling regarding the first day of sickness eligibility rather than fourth.
The UK Government has agreed to meet 80% of wages applies to everyone who is on PAYE (taxed before you receive your wages). How this 80% will actually be calculated has yet to be decided by the Chancellor. It is thought that it will be based upon your average week’s pay. As soon as we have more information on this we will update this section accordingly.
The Government pledge to pay 80% of wages does not apply to those whose hours have been reduced; only those whose jobs have been suspended due to the pandemic. However, you are entitled to “guarantee pay” which amounts to up to £29 per day. Remember though that this is limited to only five days in any three month period so you may want to speak with your local Jobcentre regarding Universal Credit and if you are eligible to make a short term claim.
Financial support plans for the self-employed have yet to be announced by the Government. However, the Chancellor has announced that the date for filing self-assessment tax payments to HMRC will be delayed and that if you were due to pay a second instalment by 31/07/20 you will have until January 2021 to do so. If you are unsure about contact HMRC directly.
The Government has removed the minimum income floor for universal credit claims – this should increase what you are entitled to. The standard allowance for a single universal credit claimant aged 25 or over is usually £317.82 a month, but it is being increased to £409.89, and there are other elements you may be entitled to. Couples can claim more but if your partner is still earning that will affect how much you can claim.
There’s no evidence for this. There’s evidence that similar viruses transmit less well in the heat, but many countries with reported Covid-19 cases are experiencing temperatures higher than this.
There’s no evidence that the temperature of liquids consumed can either protect you from or cure diseases caused by viruses.
With you wherever you are – our support services outreach
With many of us having to self- isolate we can feel alone and lacking normal human contact. That is why Cardiomyopathy UK will be taking our support services online so that people within our community can get together virtually and via phone.
E-Support Groups As you may know all our support groups that meet face to face have been temporarily suspended in accordance with current UK Government guidelines around social distancing, self-isolation and COVID-19. We are currently looking to develop these groups to take place online so all you will need is a PC / tablet with a webcam. To find out when your group will be meeting online keep an eye on our support group page https://bit.ly/2worLwv We will of course give you instructions on how to join the groups in advance.
Coffee and Catch Up One of the most important aspects of maintaining good emotional well being when we are self-isolating is to talk to others and feel part of a community. We will be offering a series of Coffee and Catch Up online meet ups where people can come online as group with members of the charity’s services staff to have a chat and share how they are feeling and what they are finding helpful to maintain good well being whilst in isolation.
Some of our people have told us that they don’t want to talk about COVID-19 or cardiomyopathy per se, they just want to have a natter with other people who are in a similar situation. Dates, times and joining instructions for Coffee and Catch Up can be found here.
One to One We understand that people are scared and are not sure what to do. We are here for you at the end of the phone. We will be checking in with those in our community who have asked for calls and if you would like to receive a call from one of our services team just to share concerns, and to feel more connected please email our Head of Services, Ali who will make sure she or one of her team will call you when it is convenient for you.
Ali can be reached at Alison.thompson@cardiomyopathy.org
Facebook Live – What matters to you The charity will be hosting several Facebook Live sessions which will cover clinical Q&A’s, tips on improving mental health whilst in isolation, welfare and employment advice as well as any other issues that you care about. In case you've missed any that have already been broadcast, you can watch them below:
Dr Will Bradlow, 25th March
Professor Perry Elliott, 15th April
Dr Ian McPherson, 6th May
Professor Perry Elliott, 24th July
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If there is a topic you would like to see covered by the relevant expert, please let Ali know.