Heart Failure Patient Information
During Covid-19 Outbreak
Why are we writing this?
The Pumping Marvellous Foundation is the UK’s heart failure charity. Our main aim is to help people live better with heart failure. COVID-19 is already having a significant impact on people living with heart failure. We want to help you manage this better and get you through this. You are at risk. Therefore, we hope this guide helps you.
Like all our information, it is written by patients and carers and reviewed by leading UK Heart Failure Specialist Cardiologists and Heart Failure Nurses.
This information is for the whole of the UK irrespective where we have referenced some of our sources.
Why is this important?
Living with a condition like heart failure can be challenging at the best of times. We know it’s not just the taking of the medicines, tests and investigations, it’s all the social and mental health challenges it creates. In this period of uncertainty, decisiveness around how you live your life is essential. The most important conversation in our patient communities is the amount of rapidly changing information and how confusing this is. This factsheet will help you manage this situation, you find yourself in, better.
It is imperative that if you have a diagnosis of heart failure, you follow strict social distancing measures and self isolation, or shielding as appropriate.
People with Heart Failure self-managing with Heart Failure through the Coronavirus COIVD-19 situation
This factsheet will help you manage this situation, you find yourself in, better.
COVID-19 is a new virus. It is part of a family of viruses called “Coronavirus” just like seasonal flu is in the family of “influenza” viruses.
COVID-19 predominantly impacts your lungs and airways and therefore is a respiratory condition.
We are in a pandemic situation with COVID-19. A pandemic means that the virus epidemic has spread across a significant number of countries.
It will impact the NHS across the UK with increased hospital admissions.
There is no vaccine at the moment.
Coronavirus is spread by coughing and sneezing or by close contact with someone who has the virus.
COVID-19 is spread by physical interaction. Therefore, by reducing your interaction with others is the best way of preventing you and your family getting it.
Sometimes people don’t show symptoms but can still pass it on.
It is imperative that if you have a diagnosis of heart failure, you isolate yourself now if you already haven’t.
Below are recommendations from the NHS England Website. To minimise the risk of contracting COVID-19, you should
- wash your hands with soap and water often – do this for at least 20 seconds
- always wash your hands when you are at home
- use hand sanitiser gel if soap and water are not available
- cover your mouth and nose with a tissue or your sleeve (not your hands) when you cough or sneeze
- put used tissues in the bin immediately and wash your hands afterwards
- avoid close contact with people who have symptoms of coronavirus
- only travel on public transport if you need to
- work from home, if you can
- use phone, online services, or apps to contact your GP surgery or other NHS services
- do not touch your eyes, nose or mouth if your hands are not clean
- do not have visitors to your home, including friends and family
Below is a practical list from our patient community that is helping them to reduce their exposure to the virus
- If it is absolutely necessary to go out in the car take some antibacterial/anti-viral wipes and gloves so that when you get back in the vehicle wipe down the steering wheel, gear lever, handbrake and handles
- When putting fuel in the car, wear gloves to control the pump. If you don’t have gloves clean the pump handle. Ensure you wash your hands afterwards
- Wipe down the handles of rubbish bins with antibacterial wipes or surface cleaner before and after the bin people have been. Ensure you wash your hand afterwards
- Clean all door handles or anything that’s touched each day if several members live in the household together
- If a member of your family goes to work, if possible, exercise social distancing. The person should try to stay away from you during this period. If you have to use shared spaces with other people, allocate times to use the area.
- Clean letterbox each day and wipe down mail after leaving for a while before handling
- If you have to go out to the shops disinfect trolley handle or basket handle before using supermarket trolley or use disposable gloves if you have them. Put used wipe into a small polythene bag and dispose of in a bin
- Try and get somebody who isn’t vulnerable to go to the shops and complete your shopping
- Boost your immune system by eating as healthy balanced diet as much as you can
- Frequently wipe down mobile devices and TV remote controls. Get into a routine of having alcohol-based hand gel at the front door
- Wipe your debit and credit cards with bacterial and viral wipes
- Try and use the internet or contactless payments only.
- When you go into a room or space with other people, ask them to move away to a distance of 2 metres or more
- Self-management of your heart failure is important
- Weigh yourself daily to keep an eye on your weight
- Either socially isolate or respect the social distancing rules of staying 2m from people
- If you have a family, keep on top of cleaning surfaces throughout the day
- Keep washing your hands with soap and water
- Get into the back garden to get some fresh air
- Look after your mental health. Keep yourself busy, read, sort out that pile of paperwork, DIY, puzzles, jigsaws, board games, learn a new skill, knit, sew. Those with games consoles, need we say more.
- Get writing; they say everyone has a book in them. Keep a journal of your feelings; you can always express what you really feel like saying but couldn’t verbalise to a person
- If you do need to go out and drive, wipe down your handles, steering wheel, gear stick and handbrake or any area of the car you touch like the boot lid or the bonnet with anti-bacterial/anti-viral wipe
- Put a delivery box outside your front door for postal items
- Leave your outside shoes at the front door
- If you have been out, go straight to the shower or wash your hands with soapy water. If you have touched any handles or doors to get there go back and wipe them with a soapy cloth or wipe with anti-bacterial/anti-viral wipe
The main symptoms to watch out for are:
- A new cough – not just a normal cough you may have but a new cough
- A high temperature
Other symptoms may include breathlessness fatigue, headaches, sore throat, aches and pains.
As somebody with heart failure, some of these symptoms may be with you all the time, cough, fatigue and breathlessness.
However, whilst self-managing your heart failure before COVID-19, you will know when your symptoms are deteriorating and if it isn’t manageable by yourself, this is the time to contact your heart failure team.
Remember 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.
It is important to remember that heart failure treatment will continue. People will be triaged and treated according to their clinical need. However, the current pressures on the NHS may result in cancellations and delays and therefore, disruption. We are in a unique situation, and we will all need to work with the NHS. Your heart failure service may not be the same in terms of regular appointments being available. It may only be available if your symptoms are getting worse. It is important you self- mange your condition as much as possible.
You should contact your regular social visitors such as friends and family to let them know that you are reducing social contacts and that they should not visit you during this time unless they are providing essential care for you. Essential care includes things like help with washing, dressing, or preparing meals.
If you receive regular health or social care from an organisation, either through your local authority or paid for by yourself, inform your care providers that you are reducing social contacts and agree on a plan for continuing your care.
If you receive essential care from friends or family members, speak to your carers about extra precautions they can take to keep you safe. You may find this guidance on Home care provision useful.
It is also a good idea to speak to your carers about what happens if one of them becomes unwell. If you need help with care but you’re not sure who to contact, or if you do not have family or friends who can help you, you can contact your local council who should be able to help you.
Source NHS England date 23/03/2020
Physical distancing / Social distancing – the default for everyone in the country. All HF patients must be particularly stringent about these measures.
Physical isolation / Social isolation – those people who have been diagnosed with, exhibit symptoms of, or have been exposed to COVID-19.
Shielding – those people who have been identified as extremely at risk.
It is important to understand physical distancing is about shielding you from others and also others from you. If you don’t follow physical distancing, physical isolation and shielding you are also putting others at risk.
As of 8.30pm on the 24th March 2020 these are the instructions you must follow:
- Leave Home for basic necessities
- One form of exercise a day
- Any medical need / care for vulnerable persons
- Travelling to and from work, only if absolutely necessary
- The above stays in place until lifted – there is no definite timeframe indicated for the lifting of these very important restrictions.
Below you will find useful information to help with making your decisions.
Physical Isolation is a shielding measure to protect people who are clinically extremely vulnerable by minimising all interaction between those who are extremely vulnerable and others. We are strongly advising people with serious underlying health conditions (listed below) which put them at very high risk of severe illness from coronavirus (COVID-19) to rigorously follow shielding measures in order to keep themselves safe.
1. Solid organ transplant recipients
2. People with specific cancers:
- people with cancer who are undergoing active chemotherapy or radical radiotherapy for lung cancer
- 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 which 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
3. People with severe respiratory conditions including all cystic fibrosis, severe asthma and severe COPD.
People with rare diseases and inborn errors of metabolism that significantly increase the risk of infections (such as SCID, homozygous sickle cell).
4. People on immunosuppression therapies sufficient to significantly increase risk of infection.
5. Women who are pregnant with significant heart disease, congenital or acquired.
Shielding is for your personal protection. It is your choice to decide whether to follow the measures we advise. Individuals who have been given a prognosis of less than 6 months to live, and some others in special circumstances, could decide not to undertake shielding. This will be a deeply personal decision. We advise calling your GP or specialist to discuss this.
The NHS in England is directly contacting people with these conditions to provide further advice.
If you think you fall into one of the categories of extremely vulnerable people listed above and you have not received a letter by Sunday 29 March 2020 or been contacted by your GP, you should discuss your concerns with your GP or hospital clinician.
We understand this is an anxious time and people considered extremely vulnerable will understandably have questions and concerns.
Plans are being readied to make sure you can rely on a wide range of help and support.
Source Public Health England date 23/03/2020
If you do have to go out for any reasons and please note the statement above about what you can do, then this is physical distancing?
Physical distancing measures are steps you can take to reduce physical interaction between people. This will help reduce the transmission of coronavirus (COVID-19).
They are to:
- Avoid contact with someone who is displaying symptoms of coronavirus (COVID-19). These symptoms include high temperature and/or new and continuous cough
- Avoid non-essential use of public transport when possible
- Work from home, where possible. Your employer should support you to do this. Please refer to employer guidance for more information
- Avoid large and small gatherings in public spaces, noting that pubs, restaurants, leisure centres and similar venues are currently shut as infections spread easily in closed spaces where people gather together.
- Avoid gatherings with friends and family. Keep in touch using remote technology such as phone, internet, and social media
- Use telephone or online services to contact your GP or other essential services
Everyone should be trying to follow these measures as much as is practicable.
This advice is likely to be in place for some weeks if not months.
Source Public Health England date 23/03/2020
There are general principles you can follow to help prevent the spread of respiratory viruses, including:
- washing your hands more often – with soap and water for at least 20 seconds or use a hand sanitiser when you get home or into work when you blow your nose, sneeze or cough, eat or handle food
- avoid touching your eyes, nose, and mouth with unwashed hands
- avoid close contact with people who have symptoms
- cover your cough or sneeze with a tissue, then throw the tissue in a bin and wash your hands
- clean and disinfect frequently touched objects and surfaces in the home
Source NHS England date 23/03/2020
For people living in Scotland the Scottish Government has this page which will help people living in Scotland:
PM Employment Guidance during the COVID-19 outbreak
We wanted to provide you with some clarification of what the guidance is around work and the impact of coronavirus to our lives as employees.
For those of you who are still able to work whether this is in a workplace or flexibly from home you will continue to be paid as normal. If your employer temporarily closes you still have to be paid. Normally this is referred to as a “lay off” situation. With coronavirus the government has agreed if you are still employed but do not currently have work, you will still get your pay. The idea is to prevent mass unemployment.
Your employer will be able to access grants, by the end of April 2020 from the UK’s tax authority to allow them to keep paying you. The government says 80% of gross pay in the private sector, up to £2,500 a month, for those not working and who would otherwise have been “laid off” will be covered by these grants from HM Revenue and Customs (HMRC). These will be backdated to March 2020 and the scheme will last three months at least.
It is up to your employer as to whether they make up the difference to 100% or not.
Your normal sick pay rules as per your employment contract will continue. This means you will be on sick pay or if your contract allows sick pay plus an enhancement called company sick pay which normally brings your pay up to your normal earnings level for a defined period of time. Your absence management and sick pay policy should explain what these arrangements are.
If through your normal policy, you have already exhausted your company sick pay you will be paid statutory sick pay. This is currently £94.25 for 28 weeks and will increase to £95.85 in April 2020.
When your children’s school is closed, your employer should have policies in place to deal with dependency leave to allow you to plan for childcare. Employees are entitled to time off work to help someone who depends on them (a ‘dependant’) in an unexpected event or emergency. This would apply to situations related to coronavirus (COVID-19). For example:
- if you have children you need to look after or arrange childcare for because their school has closed
- to help their child or another dependant if they’re sick, or need to go into isolation or hospital
This is normally 1-3 days with or without pay depending on the generosity of your employer, your employer is not forced to pay you unless your contract requires it.
In the instance of coronavirus many employers are allowing parents to work flexibly, to try to manage both work and childcare. Key workers, who have been defined by the government, can still send children to school or nursery.
An individual may usually leave a child with their grandparents while they’re out of school, but not want to do so now, as this might result in passing the virus on to their vulnerable family members. As such, you might need a longer-term solution like flexible working and some parents might be able to work from home and be willing to do so. Another solution is for you to take up to 18 weeks’ unpaid parental leave. This will obviously be a less popular solution, so try and negotiate favourable terms with your employer.
You may do through sick pay which varies from company to company. Many employees will have contracts that allow them their normal pay while they are unable to work because they are sick.
Even where people do not get their fully paid sick leave, or if they work in jobs where they do not have contractual sick leave, there are minimum payments they can rely on, known as statutory sick pay.
Those who follow advice to stay at home will be eligible for statutory sick pay (SSP) from the first day of their absence from work. Your employer should use their discretion concerning the need for medical evidence for certification for employees who are unwell. This will allow GPs to focus on their patients. Those who follow advice to stay at home and who cannot work as a result will be eligible for statutory sick pay (SSP), even if they are not themselves sick. Your employer should use their discretion and respect the medical need to self-isolate in making decisions about sick pay.
Employees and workers must receive any Statutory Sick Pay (SSP) due to them if they need to self-isolate because:
- they have coronavirus
- they have coronavirus symptoms, for example a high temperature or new continuous cough
- someone in their household has coronavirus symptoms
- they’ve been told to self-isolate by a doctor or NHS 111
- If someone has symptoms and lives alone, they must self-isolate for 7 days.
- If someone lives in a household and is the first to have symptoms, they must self-isolate for 7 days.
- Everyone else in their household must self-isolate for 14 days.
- If anyone else in the household starts displaying symptoms, the person with the new symptoms must self-isolate for 7 days. This is regardless of where they are in the 14-day isolation period.
Employees can ‘self-certify’ for the first 7 days off work. This means following their workplace process but not having to get a note from a doctor or NHS 111. Those self-isolating due to coronavirus for more than 7 days can get an online self-isolation note from https://111.nhs.uk/isolation-note/
Employees who are in self-isolation need to follow their workplace’s usual sickness reporting process.
Even if sick pay runs out, there’s still an employment contract between the employer and the employee. You should keep:
- reporting your sickness to the employer
- following the employer’s rules for sickness
The employer should:
- keep in touch with you whilst you are off
- be clear about sick pay entitlement and when it’s due to run out
If sickness is affecting your ability to do your job, your employer might decide to review the situation. This can help the employer plan:
- how to cover the work while you are off
- any support or adjustments that might help you return to work
- your return, once you are well enough
- what happens to the job if you are not able to return for the foreseeable future?
Keeping yourself busy during COVID-19
These are troubling times indeed – time being the key word. As we all move into a period of isolation (and possibly shielding), what are we to do with all the time that we’ve suddenly found on our hands? We hope this information will help you come up with ideas to keep your mind, body and spirit busy during this time of isolation.
It is imperative that if you have a diagnosis of heart failure, you follow strict social distancing measures and self isolation, or shielding as appropriate.
There’s no doubt about it, loneliness is going to be a real issue in the coming weeks and months. Here are some suggestions to keep the loneliness at bay.
- Pick up the phone: Whilst not everybody is in exactly the same situation, everybody is going to be isolated to some degree. They’ll appreciate a call, and it will do you a world of good.
- Use technology to keep in touch: Choose your weapon. Be it Skype, Facetime, Facebook Messenger, or the dozens of other platforms out there. Nothing beats some face-to-face contact.
- Write an old-fashioned letter: When was the last time you received a personal letter in the post? How did it make you feel? We bet pretty good. Take some time and write to friends and family.
- Stay in touch with other heart failure patients: Spend some time with the fine folks on the Pumping Marvellous Help for Hearts Support Group on Facebook. It’s a very supportive and safe place for us all to speak about our fears and offer support to other heart failure patients.
How about picking up some old hobbies or starting a new one? Here are some ideas you might want to try.
- Knitting: New jumper anyone?
- Sewing: Dig out those old patterns.
- Painting: Discover your inner Picasso.
- Drawing: It doesn’t have to be for anybody but yourself
Anything really! All these activities keep your hands and mind busy and help keep your anxieties at bay.
There are now so many places for you to find art, film, music, and literature online. No need to go out to find a bit of culture.
- Watch some films: There are now many streaming services showing really good films and television series. Netflix, Amazon, even YouTube – find your favourite and get the popcorn out. How about trying a themed evening?
- Listen to music: Music always makes us feel less alone. Try not to sit in silence all the time.
- Read a book: Okay, sure, the libraries are closed. How about going through your bookshelf and rereading an old favourite? You’re still able to order books online and there are many places that you can download books to read on a Kindle, a tablet, your computer, even your phone.
- Explore a museum: Many museums now offer virtual tours of their collections, Get online and search for Virtual tours of museums. You’ll be surprised by what’s out there.
We all need a bit of activity to keep us well. Don’t forget to get moving every day. Here are some ideas.
- Get outside: If you’re allowed and feel comfortable doing so, get outside for a walk or a bike ride. Remember! The current government guidance for most of us is once per day, alone or with people that you live with, keeping at least 2m (6ft) away from anyone else. Note that this won’t apply to people who have been advised to practice “shielding” measures.
- Be a Green Goddess (or God): Many television and YouTube channels have indoor exercise programmes to keep you moving. Why not work out with Diana Morgan or Joe Wick?
- Do some gardening: Be it indoors or in a private outdoor space, you can get a lot of movement in by just getting stuck in with your plants.
When we’re on our own, it’s easy to forget to keep a schedule. Here are some tips.
- Try to go to bed and get up at your normal times: This helps to keep you sleeping well, which in turn helps keep you healthy.
- Have a wash every day: Remember to keep your personal hygiene up. Not only does it help keep you healthy, it keeps you feeling fresh and “normal”.
- Eat your meals at regular times: Just because we’re stuck inside, it doesn’t mean that we don’t need to eat. Eating regularly helps to keep you healthy.
We all now have plenty of time to get busy in the kitchen. How about joining the Pumping Marvellous Hearty Meal Share Facebook group for some support and inspiration?
Right now, it’s important to keep abreast of the current situation. But, try not to become a news addict. Follow the news daily – but not all day every day. Set aside some media free time – say 3 hours every day where you don’t watch the news, read the news, or listen to the news. Basically, take a break!
There are lots of outlets for you to share (or not) your experiences. How about these?
- Start keeping a journal: Write down your thoughts and feelings.
- Write a blog: Get online and share those thoughts and feeling with the world.
We can’t stress enough how important it is to reach out to others. Be it friends, family, or all of us here at Pumping Marvellous – reach out for help if you need it. If you’re reading this, you’re not alone. Come and join the Pumping Marvellous Help for Hearts Support Group on Facebook.