Coronavirus (Covid-19) guidance for patients with kidney disease

The latest news and information about COVID-19 for kidney patients

Recent updates

Please join us for the next Kidney Care UK Covid-19 Question Time webinar at 5pm on 29 June, where a panel of kidney doctors and researchers will answer your questions on vaccinations, what we know about the protection they provide to kidney patients and next steps now restrictions are easing.
A small US study of 30 people with organ transplants suggests a third dose of Covid-19 vaccine may increase the number of antibodies produced for some kidney transplant patients who had not mounted a strong response previously. Kidney Care UK is continuing to ask Government whether immunocompromised people will be prioritised for a third dose and will publish any news as soon as possible.
The Recovery trial has found that an antibody treatment can reduce the risk of death among people in hospital with severe Covid who have not produced antibodies of their own. It involves infusing two specific antibodies into the patient which then work to neutralise the effect of the virus.
Kidney Care UK is leading a coalition of 18 healthcare charities to ask employers to keep their immunocompromised staff safe at work. See how you can get involved.
The final stage of easing lockdown restrictions in England is to be delayed by four weeks until 19 July, amid rising cases driven by the more transmissible Delta variant, although there are specific rules regarding some gatherings such as weddings.
Dates for the review of possible easing of restrictions in other UK nations are as follows: Scotland - announcement expected Thursday 17 June about next steps, Wales - announcement on 21 June of next steps, Northern Ireland - announcement on 17 June of possible change in rules from 21 June
The BBC have published useful information about the Delta variant, which first emerged in India, in Gujarati, Punjabi, Sylheti, Tamil, and Urdu.
While there is no evidence the new variant causes more severe symptoms, those in priority groups 1-9 will have their 2nd dose of Covid-19 vaccines brought forward from 12 to 8 weeks after the 1st dose to boost protection levels. People with a second dose booked on or after 25 May will be contacted by the NHS to rearrange and do not need to make contact themselves. This includes people with chronic kidney disease.
We have published a new blog from Dr Ed Carr, in which he answers a range of questions on the Covid-19 vaccine and what emerging research can tell us.
People in the following age groups are now being invited for a Covid-19 vaccination. England – 25 years and over, Scotland – 30 years and over, Wales and Northern Ireland – 18 years and over.
People aged 16 and over who share a house with severely immunosuppressed people are now eligible for a vaccine in all UK countries, including Northern Ireland. See our vaccine section for more details.

Contents of this page

Click on any of the below to be taken to that section:-

Summary

Do not leave your home if you or anyone in your household has Covid-19 symptoms, and call your kidney unit before attending dialysis or other appointments.
Everyone should follow the guidance for their own area. Everyone should work from home if they can, minimise the number of people they meet with within a short space of time, follow social distancing measures if they go out (2m apart) and wash hands regularly.
Having moderate to advanced (stage 3+) chronic kidney disease increases your risk of becoming very unwell if you are infected with Covid-19. People with moderate to advanced CKD (stage 3+) fall within the ‘Clinically Vulnerable Group’ or the ‘Clinically Extremely Vulnerable Group.
People in the clinically extremely vulnerable group are at highest risk of very poor outcomes following Covid-19 infection and are advised to follow the guidance that applies in their area.
People in the clinically vulnerable group should also carefully follow social distancing guidelines.
It is important to seek support if you are shielding yourself and help is available.

Where does this information come from?

This information is produced on behalf of and with the kidney community, using the latest government and NHS guidance and that of the Renal Association and its partners.

Kidney Care UK, NKF, Renal Association, and British Renal Society logos together

What should I do if I have symptoms of Covid-19?

If you have:

a high temperature (over 37.8 degrees)
a new continuous cough or
a loss or change in your normal sense of smell or taste.

Then you should get a PCR test as soon as possible by visiting the NHS coronavirus page. Those unable to access the internet can call 119 in England, Wales and Northern Ireland or 0300 303 2713 in Scotland to book a test. You may like to read our blog about one person’s experience of the testing process.

You must also start to follow government guidance on self-isolation, including the rules for your household and/or support bubble. Support is available for people who are self-isolating, including financial support.

If you have symptoms of Covid, please do not go to your renal unit or dialysis until you have spoken to them on the telephone, and do not go to your GP, hospital or pharmacy. Dialysis patients will still need to go to dialysis, and your unit will let you know when that will be.

If you are in the clinically extremely vulnerable group of patients, as soon as you develop symptoms of Covid-19 you should let your kidney doctor know, or GP if you are not under hospital care currently. You should also seek clinical advice using the NHS 111 online coronavirus service or call NHS111 if you don’t have internet access, telling the call handler about your kidney condition. In an emergency, call 999 if you are seriously ill. Do not change your medications unless advised to do so by your renal unit.

There is additional guidance for people with symptoms of Covid who live with those who are at higher risk from Covid-19, including kidney patients, which is aimed at keeping higher risk people safe.

What does my PCR test result mean?

A positive result means that you have a Covid-19 infection.

You must stay at home for at least 10 days even if you are feeling well.
Everyone in your household and/or anyone you have been in close contact with from your support bubble must self-isolate for at least 10 days. Rules regarding self-isolation are here.
If during the 10 days of isolation you feel your symptoms are worsening, or if after seven days you do not feel better then please use the NHS 111 coronavirus service, telling the call handler about your kidney condition, and keep your dialysis unit updated.

A negative result

Usually means you did not have Coronavirus on the day that the test was done.
You can stop self-isolating if you test negative, as long as:
- Everyone you live with who has Coronavirus symptoms also tests negative.
- You feel well
You must keep self-isolating if:
- Someone in your home tests positive (you may still get Coronavirus infection)
- Someone in your home has symptoms and has not been tested, or is awaiting test results
- You have diarrhoea or you’re being sick - stay at home until 48 hours after they've stopped
If you still feel unwell or your condition is worsening, seek medical help as you may have something else wrong with you which needs treatment.

Does a negative result always mean that I don’t have Coronavirus infection?

A small number of kidney patients have an illness typical of Coronavirus but have a negative swab result.
- This is more likely if you take medication to suppress your immune system, for example steroids or antirejection medicines for a kidney transplant.
- We are still learning about this type of illness, and the Coronavirus Antibody test (see below) may be helpful in this situation.
It is always best to be cautious – if you feel unwell, please seek advice from your kidney unit as you may need further tests or treatment.

Testing for people who do not have symptoms

Rapid lateral flow tests are available for many people who do not have symptoms of Covid-19, to help identify people who have the virus and prevent the spread. It is a Covid-19 test you do yourself. It shows you the result on a handheld device that comes with the test.

Everyone in England and Scotland who does not have Covid-19 symptoms can now get rapid lateral flow tests to check for the virus. Further information is available on government websites for England and Scotland.
People in Wales who are not able to work from home, or are unpaid carers or volunteers can get free rapid home testing kits. See the government website for more information. If you get tests through your employer or place of education you can continue to do so.
People in Northern Ireland who cannot work from home can get free rapid home testing kits. See the government website for more information.
Some employers are also running workplace testing schemes, and school and colleges have schemes for students, staff and parents (see our going to school section for more information).

It is important to note that although regular testing with lateral flow tests is helpful in identifying cases and reducing the spread, these tests are not as sensitive as PCR tests (tests taken when you have Covid symptoms). It is therefore essential that you continue to follow careful social distancing and hygiene measures and if you have any symptoms of Covid-19 you book a PCR test and self-isolate.

NHS Test and Trace

The NHS Covid-19 App has launched in England and Wales as part of the testing and contact tracing programme. It will notify users of the app if they have been in contact with someone who later tests positive for the virus and asks them to self-isolate. It can be used to report symptoms, check into venues for contact tracing purposes and book a test.

Similar apps are available in Scotland and Northern Ireland.

It can take some time to develop Covid-19 after you have been in contact with an infected person. Therefore, even if you feel well, you must follow instructions to isolate to protect the people around you, including your family and other kidney patients. There are fines for breaching the rules or for forcing someone else to breach self-isolation. Support is available for people who are self-isolating, including financial support.

If you have regular haemodialysis treatment, a “close contact” may include a patient who had dialysis at the same time as you even if they were not within 2 metres of you.

You must inform your kidney unit immediately if you are required to self-isolate and:

You have regular haemodialysis or peritoneal dialysis – treatment must continue.
You have a planned hospital treatment within 14 days.Your appointment should be done in isolation conditions or delayed.
You have a planned hospital appointment within 14 days. Your appointment should be done by phone or in isolation conditions.

Antibody testing

An antibody test is a blood test, either from your arm or finger. It tests if your immune system is making proteins (antibodies) to fight the Coronavirus. Antibodies usually develop about 7-14 days after infection starts. The tests are not yet widely available. The Covid Symptom Study Zoe has published a brief introduction to antibodies and antibody tests.

I would like to have an antibody test, should I buy a test from the internet?

It is best not to do this as test kits available on the internet may not be reliable.
It is best to talk to your kidney team as they may be able to arrange for you to have an antibody test.

For information about antibody tests after your vaccine please see the vaccine section.

Long Covid and the Covid Recovery Service

The NHS have launched Your Covid Recovery, a new online service for those who have survived coronavirus but have persistent concerns related to areas such as breathing or mental health (including 'Long Covid'). The recovery service hosts information from rehabilitation experts about how to manage ongoing symptoms and health needs at home, and on returning to work. It also signposts other useful places to get support and contains a helpful section for family, friends and carers of those who are recovering.

Are kidney patients affected by Long Covid?

It is likely that people with kidney disease have developed Long Covid but we do not know at this point whether it has affected their kidneys. The descriptions of long Covid are based on people’s symptoms like tiredness and difficulty thinking, rather than damage to organs. Studies are ongoing which may tell us about how people’s organs are affected. There are also a number of research studies looking at the causes and best treatments for Long Covid.

No-one in my household has symptoms - what should I be doing?

This depends on how vulnerable you are to Covid-19 and where you live. In general, the later stage of your kidney disease, the greater your risk from Covid-19 and the more careful you need to be. We explain the different actions you should take depending on your vulnerability below:

The whole population should follow Government rules designed to minimise contact between people. There are certain exceptions such as work or schools, or for childcare or caring reasons.

The details of the rules vary slightly between each country and regions. Please follow the links for each country for more information. There is additional guidance for people at higher risk from Covid-19.

England: Restrictions are now easing although the final stage of easing lockdown restrictions in England is to be delayed by four weeks until 19 July, amid rising cases driven by the more transmissible Delta variant. There are specific rules regarding some gatherings such as weddings.

The current rules and timetable for easing of restrictions are explained on the Government website.

New guidance has been published for areas where the new variant is spreading fastest, encouraging people to take measures to reduce the spread of the virus.

Wales: Wales is now at alert level 2. Current restrictions and questions and answers are available here with the next announcement expected on 21 June.

Scotland: Restrictions have eased in some areas of Scotland although many areas in the central belt remain at level 2. Rules and dates for further restriction easing are on the Government website with the next announcement expected on 17 June.

Northern Ireland: Updated guidance has been released for Northern Ireland. Information on current restrictions is available on the government website with the next announcement expected on 17 June.

People with moderate to advanced (stage 3+) chronic kidney disease (CKD) are at greater risk from severe complications from Covid-19 (see table below for more detail on the different stages of CKD). This greater risk places them within the Clinically Vulnerable Group or the Clinically Extremely Vulnerable Group, depending on the severity of their disease, the treatment they receive and other illnesses or conditions they have.

Advice for the Clinically Vulnerable Group and people aged over 60

If you are over 60 or in the clinically vulnerable group, you could be at higher risk of severe illness from coronavirus. The Clinically Vulnerable Group includes all of those aged over 70, people who are pregnant and people aged under 70 with specific underlying health conditions (including anyone advised to get a flu jab each year on medical grounds).

As well as following rules for the whole population, people aged over 60 or who are in the Clinically Vulnerable Group should be particularly stringent in following social distancing measures. This means try to visit shops at quieter times, avoid non-essential use of public transport and keep the number of people you meet with low. You may still go to work if you cannot work from home and your workplace is Covid-safe.

There is some helpful guidance produced for clinically vulnerable people living in Scotland (Chronic Kidney Disease non-shielding document).

Advice for the Clinically Extremely Vulnerable Group

People in the Clinically Extremely Vulnerable Group (CEV Group) are at highest risk of becoming very unwell or dying if they catch Covid-19. They include adults who have had a transplant, are on dialysis or take a certain level of immunosuppressive medicines. Adults with CKD stage 5 who have not had a transplant and are not on dialysis have now also been added to the CEV group.

At the beginning of 2021, an additional 1.7million people in England were identified as potentially Clinically Extremely Vulnerable, following the development of the new Covid-19 Population Risk Assessment tool (using the Oxford University’s QCovid risk prediction model). See the section on Which adults with kidney disease are clinically extremely vulnerable? for more information on this tool.

See our section on Guidance and Support for people who were advised to shield for detailed advice about the measures that people in the CEV group should take (and see Renal Association advice below for certain groups of kidney patients).

Importantly, the Renal Association recommends that patients within the first three months of a kidney transplant should continue to follow full shielding. We are asking that they receive financial support from the Government to do so. The Renal Association also recommend that people who have a planned living donation should self-isolate for 14 days prior to the date of the procedure. This is in line with NICE guidance.

Which adults with kidney disease are clinically extremely vulnerable?

There are 3 ways you may be identified as Clinically Extremely Vulnerable:

You are in at least one of the groups listed below.
Your doctor has added you to the Shielding Patient List because, based on their clinical judgement of your condition, they deem you to be at high risk of serious illness
You have been identified through the Covid-19 Population Risk Assessment at being high risk of serious illness if you catch the virus.

Groups included in the Clinically Extremely Vulnerable category (See our information on children for advice for this group):

You have a transplant
You are on dialysis
You have CKD stage 5 and are not on dialysis and have not had a transplant. The definition renal units will be using to identify adults (18+) in this group is as follows:
1. Chronic kidney disease (CKD) is defined as a reduction in kidney function or structural damage (or both) present for more than 3 months (NICE CG 182).
2. CKD stage 5 (or G5 A1-3) is defined as a GFR less than 15 ml/min.
3. It excludes individuals who temporarily drop below 15 ml/min (e.g. acute kidney injury)
If you over 70 and are on any form of immunosuppression or have been on one in the past
Your kidney disease is caused by inflammation, a condition of your kidneys (sometimes called an autoimmune condition) AND you are in one or more of the following patient groups:

If you have had within the last 6 months treatment for a flare of your kidney disease (“induction”) – with high dose steroids (>20mg per day of prednisolone) and / or cyclophosphamide / rituximab or other biologic drug.
If you are taking more than 10mg of prednisolone every day
If you are over 70 years of age
For children, the medicine dose that puts them in the extremely vulnerable group may be lower, please contact your kidney team to clarify if they have not already done so.

What is an inflammatory condition?

Inflammatory conditions of the kidneys include but are not restricted to vasculitis, systemic lupus erythematosus (often called lupus), membranous nephropathy, minimal change disease, IgA nephropathy, FSGS, anti-GBM disease (Goodpasture’s disease).

Our clinical colleagues adjusted the original criteria determining which people with kidney disease caused by inflammation should be included in the Clinically Extremely Vulnerable group. The revised criteria is in the list above. The changes are based on data about which people with kidney disease are at highest risk from Covid-19. Please speak to your kidney doctor if you have any questions.

What are immunosuppressive medicines?

Immunosuppressive medications include: Azathioprine, Leflunomide, methotrexate, MMF, ciclosporin, tacrolimus, sirolimus and belatacept.

Covid-19 Population Risk Model

On Feb 16 2021, the government announced that it had identified an additional 1.7 million adults in England as potentially Clinically Extremely Vulnerable (CEV). This follows the development of a new risk assessment model (using the Oxford University’s QCovid risk prediction model). It is based on anonymised data from the first wave of the pandemic which identifies the factors that increase a person’s risk of poor outcomes from Covid-19. The tool combines a number of factors such as age, sex registered at birth, pre-existing conditions, ethnicity and BMI, to estimate the risk of serious illness from coronavirus. The Covid-19 Population Risk Model combines all of an individual’s characteristics, for example age, ethnicity, CKD stage, and other health conditions, to come up with their individual risk. A person with CKD 4 with no other risk factors may be at lower risk than a person with CKD 3 who has a number of other high-risk characteristics.

People above an agreed threshold of risk were added to the CEV group. Those who are identified by the tool as potentially Clinically Extremely Vulnerable will be called for a vaccine immediately (if they have not already had it), added to the shielded patients list and alerted if advice to shield returns and are also entitled to the range of support available for CEV people. It will not mean anyone is removed from the existing shielding list.

It is currently in use only in England and governments from other UK nations are considering how it may be used in their populations. he BBC have published videos discussing this change in Punjabi, Tamil, Sylheti, Urdu and Gujurati.

If you think there are good reasons that you should be added to the Clinically Extremely Vulnerable Group/shielding list the Government guidance states that you should contact the GP in the first instance.

Guidance and support for people who are in the Clinically Extremely Vulnerable Group

Advice that people in the CEV group should shield paused across the UK in April 2021. This means CEV people should follow the same guidance as for the rest of the population but you are advised to take extra steps to minimise your risk of exposure to the virus by following this guidance. It is important that everyone continues to follow guidance on how to reduce risk of exposure, even after vaccinations, as we are still learning about the protection offered by the vaccine.

Please note, the Renal Association also advises certain groups of kidney patients to shield regardless of local advice.

Links to each country’s current information and sources of support for people in the clinically extremely vulnerable group are listed below. The shielding list will be maintained in case this group need to be contacted again with further information.

England

Government guidance for CEV people in England.

This letter was sent to the shielding group when shielding was paused in April 2021.

Support for clinically extremely vulnerable people in England

If you are struggling as a result of Coronavirus please visit www.gov.uk/find-coronavirus-support or use this postcode search tool to find out what help you might get from your local authority. Councils will still look to provide assistance wherever possible, so do please contact them if you need support. If you do not have internet access then please telephone your local council.

The NHS Volunteer Responders programme is still available to help support those who need it. Volunteers can collect and deliver shopping, medication and other essential supplies. Call 0808 196 3646 between 8am and 8pm, 7 days a week to self-refer or visit the NHS Volunteers website for further information. There may also be other voluntary or community services in your local area that you can access for support.

Although you are no longer advised not to visit the shops (but should keep to quiet times if possible) supermarkets will continue to offer priority access to online shopping delivery until 21 June 2021.

Wales

Government guidance for CEV people in Wales.

This letter was sent to the shielding group when shielding paused in April 2021.

Support for Clinically Extremely Vulnerable People in Wales

If you need support and you do not have friends, family or neighbours who are able to help you, you should contact your local council or voluntary organisation. The Welsh Government letters sent out have local authority contact details at the bottom of the letter.

You should speak to your pharmacy if you need help with picking up medicines.

The Government have also published a list of sources of help with essential shopping.

There is also a Government service available if you, or someone you know, is affected by Coronavirus (COVID-19) and needs additional support. This will help you to find information for a wide range of matters, from paying bills to finding somewhere to live.

Northern Ireland

Government guidance for CEV people in Northern Ireland.

Support for Clinically Extremely Vulnerable People in Northern Ireland

You should go to the Community NI website where you can input the help that you need and your location to be matched with a voluntary organisation offering that help.

There is also an Advice NI helpline to help vulnerable groups access information and advice: Freephone 0808 802 0020 or you can get in touch by email ([email protected]) and text message (text ACTION to 81025).

Scotland

Government guidance for CEV people in Scotland.

The Scottish Government sent these letters earlier in 2020 to people with organ transplants and people on dialysis with more information about how Covid-19 might affect them.

Support for Clinically Extremely Vulnerable People in Scotland

You should visit the Scottish Government Covid-19 support page for advice if you need support. A helpline (0800 111 4000) has been set up for those at increased risk who don’t have a support network, such as family or existing community support. This helpline will continue to be available even though shielding is now paused.

Callers will be connected to their local authority who will help them access the services they need, such as:

essential food and medication
links to local social work services for vulnerable children or adults
emotional support
contact with local volunteer groups

The helpline is open from 9.00am to 5.00pm, Monday to Friday.

Across the UK, you may also be able to find help through local support groups or your local authority.

Why has advice to clinically extremely vulnerable people changed over time?

Advice about the measures you should take to keep safe change as the infection rates across the UK change and more is learnt about the virus and its effects. In addition, Government have explained that during the first period of national shielding in 2020, many people found the shielding advice very restrictive. They aim to make guidance a better balance between giving people practical steps to help keep safe while reducing some of the potentially harmful impacts on mental and social wellbeing of previous shielding guidance.

Support with shopping

The government foodboxes have stopped now that the initial period of shielding paused in each of the UK countries, but 7 major supermarkets (Asda, Sainsburys, Tesco, Morrisons, Iceland, Waitrose, Ocado) are retaining priority supermarket online delivery slots for clinically extremely vulnerable people who need them until 21 June 2021.

If you’re struggling to secure an online delivery slot, you could check alternatives to supermarkets such as local independent shops, farm shops, community shops and wholesalers. Try asking community groups if they know of any or check these websites: localfooddrops.co.uk and wedeliverlocal.co.uk. You should also contact your local authority if you need support with shopping.

The Government website also has information on how to get food and other essential supplies during the Covid-19 pandemic.

If you are using a voluntary service to help you with shopping, or friends and family are shopping for you, you may like to refer them to the new British Dietetic Association’s guidelines for a kidney friendly shopping list.

Understanding and managing your risk

Many people with kidney disease will be used to making decisions about risk and will now be making choices about undertaking their usual activities based on their own circumstances, for example the number of cases of Covid in their area, ease of access to quiet outdoors areas or whether they need to work outside the home.

When coming to a decision, it is important to consider the important benefits that spending time outdoors and interacting with other people can have for your physical and mental health. However, people who are clinically extremely vulnerable remain at high risk if they catch Covid-19 and you are strongly advised to follow the guidance for your local area, keep the number of people you meet with low and carefully follow social distancing guidance. There is specific advice about returning to work safely in our employment section.

What is my individual risk and who can I discuss this with?

It is really difficult to measure exactly a person's individual risk. You may find it helpful to read this blog from Dr Tony Williams on assessing personal risk of Covid and tools that can help with this. You can also discuss individual risk with your renal team who can help you think through your own situation.

How likely you are to catch Covid-19 depends to a great extent on how much the virus is passing from person to person in your local community which changes over time. You may find it helpful to look at how many cases of Covid-19 there have been in your local area in the past week. Postcode search tools are available from the BBC and the Government. You can further reduce your risk of catching Covid-19 by following measures you will be familiar with such as social distancing.

How likely you are to become severely unwell if you do become infected with Covid-19 depends on many things and in particular, your age, ethnicity, sex (higher risk in males) and whether you have other health conditions. Being on dialysis, having had a kidney transplant or having CKD stage 5 unfortunately does increase your risk of becoming severely unwell with Covid-19 should you become infected. People with kidney disease often also have other health conditions such as diabetes and heart disease which increase their risk further

Risk calculators (where people can work out their own level of risk) are available but some are not detailed enough to be helpful. For example, some include kidney disease in general but do not break down this category into early kidney disease, people on dialysis or those with transplants. The following tools do enable a more detailed assessment of risk:

The new Covid-19 Population Risk Assessment tool has been developed to enable a more individual approach to risk assessment, and has identified more people who are at high risk from a very poor outcome from Covid-19. It is for use by clinicians rather than the general public. It may underestimate risk for health conditions that have been on the Government’s list of conditions that make people clinically extremely vulnerable since the beginning of the pandemic. This is because many people with those conditions have been shielding and therefore lower numbers may have lost their lives to Covid than would otherwise be expected.

There is also the ALAMA Covid-age tool which can estimate your ‘Covid age’ to help predict your vulnerability to Covid. This is based on the evidence that age is a very important factor in determining a person’s risk from Covid-19. Taking into account age alone, a 25 year old is at lower risk from Covid-19 than a 50 year old, who is in turn at lower risk than an 80 year old. Having other risk factors, such as kidney disease, will increase your ‘Covid-age’. A 30 year old with a well-functioning kidney transplant would have a ‘Covid-age’ some years above 30. However, their risk may still be moderate compared to people aged over 70 with no other risk factors.

We recommend you read the guidance first, before using the Covid-age tool. The Alama Covid-age tool can be used as part of a workplace risk assessment. See our employment section for more information.

Medical colleagues have published a risk stratification grid, informed by the ALAMA Covid-age tool,that will help kidney doctors determine a person’s individual risk. This will be kept under review as new evidence becomes available. It should be used as part of a discussion with your doctor, as everyone will have unique circumstances which might affect their own risk. The grid informs the Renal Association’s infographics below.

The Renal Association have published 2 template letters, for use after discussion with your kidney doctors, one for patients, and one for family members who work, which can be shown to employers to help them understand their employee’s individual risk and the action that could be taken at the workplace to reduce that risk. Patients can ask their kidney doctors to complete the template letters with information about their individual risk, using information from the risk grid.

The British Heart Foundation (BHF) website also has a section on reducing risk if you have heart disease. Diabetes UK also has COVID-19 advice if you have diabetes.

Risk within dialysis units

People who receive dialysis within a unit may be concerned that their risk is increased by other patients within the Unit. Renal units have put in place lots of measures to help to keep dialysis units as safe as possible for people. They will continue to assess and triage everyone when they arrive for dialysis and they have very clear infection control procedures that they follow. Transport will also continue to do the same.

If you would like to know more about how these measures are being put in place in your own unit or if you have any concerns, your renal team would be happy to talk to you about this.

Here is a helpful video which explains what safety measures have been put in place in dialysis units.

Infographics to help patients understand COVID-19 risk

The Renal Association, in collaboration with clinical and patient groups, have produced a set of infographics to help patients understand how their kidney disease and treatment affects their risk, the level of risk of different activities and how kidney units are keeping you safe during the Covid-19 outbreak.

Which kidney patients are at greater risk from COVID-19

How are kidney units keeping you safe during COVID-19?

Which adult kidney transplant recipients are at greater risk from COVID-19

Leaving the house and leisure activities

This section should be read in conjunction with guidance that applies in your area, as there may be additional restrictions governing activities and meeting others. You may also find the infographic at the end of this section showing the risk of undertaking various activities helpful.

As restrictions ease and people start to get back to their usual activities, it remains important to follow sensible precautions as described here. This means:

Choosing quiet times to go outside and avoid crowds.
Strictly avoid contact with someone who is displaying symptoms of coronavirus (Covid-19). These symptoms include high temperature and/or new and continuous cough, loss or change in sense of taste or smell.
Staying 2m away from other people.
Wearing a mask.
Meeting people outdoors if possible and keeping spaces well ventilated if meeting others indoors.

It is also very important to follow good hygiene advice. This means:

Frequent hand washing for 20 seconds or using a hand sanitiser.
Avoid touching eyes, nose and mouth. This is to prevent the virus entering the body.
Make sure you, and people around you, follow good respiratory hygiene (covering your nose and mouth with your bent elbow or a tissue when you cough or sneeze. Then dispose of the tissue straight away and wash your hands).
Germ Defence is a website developed by Bristol, Southampton and Bath Universities to provide advice on how to reduce your risk of transmitting Covid-19 virus in your home. It is available in a range of languages.

Can I go outside at all?

It is possible to go outside whilst maintaining social distancing and there can be important benefits to mental and physical health from spending time outdoors. It is recommended you avoid busy areas. If the restrictions in your local area allow it, it is possible meet up with a limited number of people from outside your own household, whilst maintaining social distancing. See individual guidance for each UK country.

Should I wear a face covering?

People with CKD should follow the same advice as the general population with regards to wearing a face covering. The evidence suggests that face coverings do most to protect against spread of the virus from the wearer to others (rather than the other way around).

Face masks are masks normally used by healthcare workers and meet particular standards. Face coverings can be made at home out of fabric, but still may offer some protection.

The rules regarding face coverings vary between UK nations and we recommend checking local guidance for the rules in your area (England, Wales, Scotland and Northern Ireland). Some of the key areas where face coverings are mandatory are on public transport, in shops and in hospitals.

There are exemptions for children and people with impairments or disabilities which mean they cannot wear face coverings. People are not required to prove they are exempt and it is for individuals to choose how they would want to communicate this to others. For those who would feel more comfortable showing something that says they do not have to wear a face covering, exemption cards are available to print or display on mobile phones. Kidney Care UK provide ‘Distance Aware’ badges to act as a prompt to others that you wish to keep at a distance from others. The shield symbol used was developed through a national campaign with other organisations and has been adopted by the UK and Welsh governments and is supported by Twitter.

It is recommended that dialysis patients should wear face masks during transport to and from dialysis, whilst in waiting rooms and during treatment, and in most cases should be given these masks by their unit.

See the section on Going to School for information on schools and face coverings.

When you wear a face mask it is really important to use it properly and dispose of it correctly, otherwise it can do more harm than good. The following organisations have produced guidance on face masks and coverings:

World Health Organisation video showing how to use a mask.
Birmingham University infographic on how to wear a face mask or face covering.
Scottish Government guidance about face coverings
UK Government have produced guidance about how to wear and make a cloth face covering.

Should I wear gloves? And if so, should I dispose of them immediately on return to home?

No – there is no advice or requirement for kidney patients to wear gloves when they leave the house. The measures that are most important in reducing the risk of catching or spreading Covid-19 are regular, thorough handwashing (warm soapy water for 20 seconds), avoiding touching your face and keeping far apart from other people (current advice two metres). In theory, wearing gloves might actually increase the risk of catching or spreading Covid-19 as they may provide false-reassurance (and therefore reduced uptake of more important measures such as handwashing) or allow spread of the virus when they are taken off again.

What about my monitoring and blood tests?

The key in all of this to protect your safety, so you will still have necessary blood tests, medications and treatments. It is important not to make any changes to your treatment plan, unless advised to do so by your care team, and it is important to keep attending all appointments. Be reassured that your unit will ensure attendance is COVID safe. You may have concerns about how you travel to your unit and should discuss this with your team. You will be advised not to attend if you have symptoms of a possible COVID-19 infection but your team will still want to know if you are unwell so do contact them.

The NHS have emphasised the importance of continuing to seek help for any health concerns, outside of Covid-19 and have provided information on the Health at Home Website on how to access GPs; order repeat prescriptions; advice about managing long term conditions and maintaining mental and physical wellbeing.

There are significant risks of not attending for hospital appointments / blood tests. These include the risks that a change in the function of your kidney transplant might go unrecognised – which might then result in irreversible loss of kidney transplant function. Similarly, other new health problems may go unrecognised. These risks need to be weighed up against the risks of catching Covid-19 in a hospital waiting or clinic room.

The risk is not being able to check your kidney function and if any adjustment to your medication is needed. Please discuss this with your kidney unit. Your doctor should be able to advise you in more detail based on your history

The Renal Association and British Renal Society have issued a statement highlighting that NHS renal services should be supported to offer critical procedures to kidney patients during the Covid-19 outbreak. This includes investigating symptoms of kidney disease and ongoing monitoring, procedures for creating access sites for dialysis and managing complications of access, and ensuring sustainability of the kidney transplant programme.

Can I go to the shop?

If you have been told to self-isolate, avoid visiting shops or advised to shield you will need to ask a friend, family or neighbour to get your shopping items. You may also be able to get support from your local authority, NHS Volunteers or Covid-19 Mutual Aid group, local community groups, or Community NI in Northern Ireland.

If you have not been advised to self-isolate, avoid shops or shield, you are advised you can choose to go to the shops (following social distancing and hygiene measures), although clinically extremely vulnerable people may prefer to ask if friends or neighbours can help or try to choose a quiet time to shop.

Are clinically extremely vulnerable people advised they may go into restaurants/ pubs etc?

Providing local rules allow it you may go to pubs and restaurants. You should take particular care to wear a mask, maintain social distancing and always robustly practise good, frequent hand washing. There are limits on the numbers of people you will be able to meet with in these venues.

Is it safe to travel on public transport?

The risks of travelling on public transport are significant. At present, our Renal Association colleagues advise that clinically extremely vulnerable patients should avoid all non-essential travel on public transport. It is best not to travel at rush hour when you cannot avoid contact with others. If you cannot avoid travelling on public transport you should try and travel outside of rush hour, so you can keep your distance from other passengers. You should try not to touch anything if possible and sanitise your hands before and after travelling. The Access to Work scheme may be able to offer support, such as covering costs of safe travel to and from work.

Should I let people in the house for emergency maintenance?

This depends on the risk of the emergency. If someone else is available from your household, you can stay in another room and also ask the person attending to wash their hands and wear a mask

Is it safe to have a takeaway?

Yes. The Food Standards Agency advises that the risk of catching Covid-19 from food is very low. If having food delivered, you should ask the delivery driver to ring the doorbell, leave the food on the doorstep and step back at least two metres. You can minimise the risk by decanting the food into a clean container, disposing the packaging and washing your hands thoroughly before eating. Use cutlery; don’t eat with your hands.

Can I go to the hairdresser/barber?

You’ll be able to visit your hairdresser/barber if local rules allow it. If your hairdresser/barber is able to offer you an appointment without other customers present, this is advisable. You should also wear a mask.

Can I go to the gym/play sports?

You may visit the gym or play sports if local rules allow it, although it is advised CEV people should minimise contact with people from outside their household so please keep socially distanced from other gym users. Please take care to sanitise any equipment before you use it. Please ensure you wash your hands thoroughly after exercising. You should spend no more than an hour in the gym. Wear a mask if possible.

Playing sports outside is relatively low risk. Please ensure you wash your hands afterwards. If you are playing sports inside, please avoid body contact with other participants. Limit any activity to no more than an hour and make sure to thoroughly wash your hands afterwards. Wear a mask if you can.

What are the risks of catching COVID-19 from various activities

Going to school

The Government have published information for parents and carers about the measures in place in early years providers, schools and colleges in England during the pandemic, including regular testing and the requirements for face masks.

Similar guidance is available for Scotland, Wales, and Northern Ireland.

Primary school children are never required to wear face coverings, but headteachers of primary schools may require staff and visitors to wear face coverings.

Children with kidney disease and school

Most children who are judged to be clinically extremely vulnerable are advised to attend school, while practising frequent hand washing and social distancing. There may be exceptions to this for a small number of children who are still advised to shield (see section on Children with kidney disease). If you think this may be relevant to you or your child, please discuss this directly with you GP or hospital specialist.

Please see the guidance from the British Association for Paediatric Nephrology and guidance for each UK country for more detailed advice on children with kidney disease returning to school and discuss any questions with your hospital team.

Brothers and sisters of children with kidney disease should go back to school or college, as long as the environment has been made Covid-safe, in line with the government guidance for each UK country.

Is it safe for children of kidney patients to go back to school?

There is no clear-cut answer to this. In theory, it is possible for anybody – children included – to spread the coronavirus. However, there is limited evidence that spread via schoolchildren is a common route of transmission in the UK at present. One of the key things is that you need to have a discussion with the school to see what they are doing to reduce risk. This should be in line with the published guidance for each UK country. If there are any adjustments that you need to make, or you would like the school to make, then you can discuss with the school. You should also follow careful hygiene measures to minimise risk of transmission.

Children will be in bubbles with a certain number of pupils, which they stay in for lesson and for playtime. This will limit the number of children that interact together.

Other measures that schools may put in place include staggered start and finish times to reduce number of people at drop off and pick up times. They should also make sure children are washing their hands regularly and implementing an enhanced cleaning regimen in the school.

When children return from school they should shower and wash their clothes.

When you are travelling to and from school you should be careful about taking measures such as wearing a face mask and keeping 2m away from others.

Covid-19 vaccinations

Key points:

The vaccines have all passed stringent safety tests before being approved. They are not live vaccines and there is no evidence that they would lead to rejection of a kidney transplant.
People with kidney disease on immunosuppressants may have a weaker response to the vaccines, but kidney doctors recommend that it is still important to have your vaccination. Some protection is better than none.
Even after you have had both doses of your vaccine, clinically extremely vulnerable people should continue to carefully follow the advice that applies in their local area.
Kidney Care UK is campaigning for plans to further protect people who are immunosuppressed e.g. to have access to a third (booster) dose of the vaccine following similar work in other countries
Kidney Care UK is leading a coalition of 18 healthcare charities to ask employers to keep their immunocompromised staff safe at work. See how you can get involved.

Please join us for the next Kidney Care UK Covid-19 Question Time webinar at 5pm on 29 June, where a panel of kidney doctors and researchers will answer your questions on vaccinations, what we know about the protection they provide to kidney patients and next steps now restrictions are easing

Which vaccine is best for kidney patients?

Currently, there is no evidence that one vaccine is generally better than another for kidney patients or people on immunosuppressants. We will update this guidance should we learn more. We advise that you should take the first vaccine that you are offered, as it is important not to delay protection from the virus.

There are recommendations for specific vaccines amongst the under 40s in the general population, but these do not apply to people with underlying health conditions.

Should people who have already had Covid get vaccinated?

Yes, although you should wait at least 28 days after testing positive for Covid-19 before receiving your vaccination.

Who is being invited for vaccination?

The Joint Committee on Vaccinations and Immunisation (JCVI) produced guidance on the order in which different groups should be invited for vaccination. The following government websites have details on who is currently being invited for vaccination in each UK nation and how you will be contacted:

England Northern Ireland Scotland Wales

Can household members of severely immunosuppressed people get the vaccine?

To provide additional protection, people aged 16 and over who are household contacts of people who are severely immunosuppressed are being invited for vaccination. The process for booking appointments differs in UK countries.

We have heard from kidney patients that some GPs are unaware of this change and your household members have had problems booking a vaccine. We have raised this with Government officials and recommend you show your GP your country’s government information that we link to below:

England: The person who is immunosuppressed should be given a letter from their GP to pass on to their household members. The letter has information about how to book. See these links for Government guidance and letter to GPs.

Northern Ireland: Follows the same process as England. This Government announcement confirms household contacts will be able to access the vaccine (5th paragraph of announcement).

Scotland: Please telephone the vaccination helpline on 0800 030 8013 for more information about how household contacts can book. This Government guidance lists household contacts amongst those being offered vaccination.

Wales: If you are aged 16 or over and a household contact of a severely immunosuppressed adult, please complete the self referral form on the NHS website

Can unpaid carers access the vaccine?

People who are unpaid primary carers of CEV people are in priority group 6 and so are eligible for the vaccine.

In England you will need to contact your GP to register as an unpaid carer, if you have not already done so. More information for carers is available here.

Scotland have developed a self-referral system for unpaid carers – more information is here.

Information on vaccinations for unpaid carers in Wales is here.

In Northern Ireland, if you are an unpaid carer (aged 18 or over) and have been unable to book a vaccine appointment through the online booking platform or call centre, you should contact your local Trust care co-ordinator.

How well do the vaccines work for kidney patients?

As the vaccine is new, we do not yet have all the answers to how kidney patients respond. However, it is thought that although kidney patients may not respond as well as the general population, the vaccines will work well enough make it worthwhile having the vaccine, especially given the high risk to kidney patients from Covid-19.

The findings from early studies suggest a lower immune response among some kidney patients, and particularly among older patients, those who are on anti-metabolites (mycophenolate or Azathioprine) or higher combined immunosuppressive drugs and those with worse kidney function. So younger transplant recipients with a well-functioning kidney are likely to have a better response to the vaccine. People on dialysis seem to have a better response to the vaccine than transplant recipients and people with CKD not yet on dialysis may have an even better response.

People with a sluggish immune system tend to respond better to the second dose. Some early studies report a weak antibody response in certain patient groups after the first vaccine dose but a stronger response after the second (for example this JAMA study). These findings are similar to what we have seen in other vaccines, like the flu jab.

Please see our new blog from Dr Ed Carr, in which he answers a range of questions on the Covid-19 vaccine and what emerging research can tell us (information reflects evidence available at the time of writing).

How can I find out how much protection the vaccine gives me? Should I get an antibody test?

Unfortunately, at the moment it is not possible to determine exactly how well the vaccine is protecting a person against Covid-19. We recommend speaking to your kidney doctor about your own circumstances. We do not recommend that individuals undertake antibody tests without first discussing with your kidney doctor as they will not give a clear picture of how well protected you are from Covid-19. In addition, there are many different types of antibodies and most antibody tests will only test for one specific antibody which will not give a full picture of your immune response. A positive antibody test does not necessarily mean a person is protected against Covid-19 and a negative test does not necessarily mean you are not protected.

Ongoing research will tell us more about how antibody levels relate to protection from Covid-19. It should also tell us more about other facets of the immune system such as T-cells which are also important in protection. Vaccination trains the body to respond to infection in multiple ways. Antibody response is only one facet.

If you do have an antibody test via your hospital kidney team, your doctor will be able to help explain what the results mean for you. This Q&A from Imperial College has lots of useful information about vaccines and the antibody response.

What research is underway on how well kidney patients respond to the vaccine?

Separate studies are required to find out how well kidney patients respond to the vaccine:

Laboratory studies which will detect immune responses in the blood.
Registry data on how the vaccine impacts on infection rates and outcomes (real world evidence).
Whether the laboratory tests predict the real world evidence.

The UK Renal Registry will report on the real world evidence about how many vaccinated kidney patients are contracting the virus. Laboratory studies have also started to assess the response of kidney patients to vaccination and to identify whether revaccination is required (as with flu vaccination). We will publish news from these studies as it becomes available:

The Octave study is investigating the effectiveness of Covid-19 vaccines in people with suppressed immune systems. The Imperial College arm of the study will lead the investigation on the effectiveness in kidney patients. It is recruiting 150 kidney patients over the next six months and will perform an in-depth analysis of their immune response, including both serum antibody and t-cell response. The study will also look at how the vaccine protects against Covid infection and whether there are any differences in response to the different vaccines. Participants will be followed up for 6 months. The study will also seek to analyse blood samples from an additional 850 kidney patients for the presence of antibodies. More kidney units across the country will be joining the study over the coming weeks.

Another study will assess how effective Covid-19 vaccines are in kidney patients on haemodialysis and to identify if and when boosters are needed. It aims to study 1200 haemodialysis patients and is recruiting at units in: Birmingham, Cambridge, Glasgow, Imperial, Leicester, Newcastle, Oxford, South Tees.

As well as these national studies, many centres are undertaking local research studies including on people with kidney disease not requiring renal replacement therapy and patients with glomerulonephritis.

Research will also inform decisions about best timing between doses, as there is uncertainty about this currently. It remains very important to keep following social distancing and hygiene rules for the present time and it is also vital to have your second dose of the Covid-19 vaccine.

What about the trial where people without functioning immune systems are given antibodies instead of a vaccine? Could this be the best thing for people with kidney transplants?

There is an ongoing trial of an antibody treatment for people with severely impaired immune systems who would not respond to the vaccine. These antibodies can be manufactured and given to people directly, although the protection may not last as long as a vaccine. There is no data available yet to suggest this treatment is more effective than the currently available vaccines. Most people with kidney disease are likely to respond well enough to the vaccine so as not to need the antibody treatment.

The Government, research community and clinicians are exploring all avenues available to find new treatments for Covid-19 to help protect people for whom the vaccine may not work as well. The Recovery trial has found that a different antibody treatment can reduce the risk of death among people in hospital with severe Covid who have not produced antibodies of their own. It involves infusing two specific antibodies into the patient which then work to neutralise the effect of the virus.

Kidney Care UK/Renal Association Question time webinars:

We realise that people with kidney disease will have many questions about vaccines. As well as the information here, you can also watch videos of the joint Kidney Care UK and Renal Association patient information webinars (noting the content reflects knowledge and guidance available at those dates):

We will continue to update our information as we learn more.

What have the vaccine clinical trials found about how effective the vaccines are in the general population?

Clinical trial results published for the three vaccines show between 70-95% effectiveness. Ninety-five per cent efficacy means that, in the clinical trials, there were 95% fewer cases of Covid-19 in people who had the vaccine compared to the people who had the placebo (dummy treatment). The data appeared to show the Oxford/Astra Zeneca vaccine to be less effective than the other two (Pfizer-BioNTech and Moderna), but none of the people who received the vaccine for Covid-19 in the Oxford/Astra Zeneca trial became severely ill and had to go into hospital.

Data collected as the vaccine is rolled out in the general population (real world data) have also shown the vaccines have a major effect on the risk of infection, hospitalisation and death.

An online registration service is available for people who would like to be contacted about participating in a clinical trial of a vaccine.

Could ‘herd immunity’ help protect kidney patients?

Possibly. People with kidney disease may not have such a strong response to the vaccine as the general population. However, the key thing with all vaccines is not just an individual’s response, but vaccination levels across the population. When large numbers of people in the community become immune through vaccination then the virus cannot spread. This is known as herd immunity and makes it safer for everyone. This is also why people over 16 living in households with severely immunosuppressed people can now receive Covid-19 vaccinations too.

Did the vaccine trials show any difference in outcomes for people from Black, Asian and Minority Ethnic Groups?

No differences in outcomes have been found to date in Black, Asian and Minority Ethnic groups. However, although the studies were representative of the UK population, not enough people in the studies have caught Covid-19 to allow the detailed study of any particular subgroups.

Pfizer/BioNTech trials took place in the US, Europe, Turkey, South Africa and South America. Approximately 42% of global participants and 30% of U.S. participants had racially and ethnically diverse backgrounds.

AstraZeneca trials took place in the UK, Brazil and South Africa. The non-white demographic in the UK trial was 7.1%. In the Brazil trial it was 31.4% and in South Africa it was 87%

Are the vaccines effective against the new variants/mutations?

The evidence so far shows that all of the current vaccines are effective against the new variants of Covid-19. This is because the vaccines focus on the spike protein which only changes ever so slightly in each new variant. This means that the immune response the vaccine produces in your body is still effective if it encounters a new variant.

However, new data suggests that people may be less protected against the Delta variant (first emerging in India) after the first dose, which is why the second dose has been brought forward from 12 to 8 weeks for people in the first 9 priority groups.

Vaccine research is still ongoing and new vaccines will be developed including potentially for any new variants if necessary, in the same way that the flu vaccine is slightly different each year.

Are the vaccines safe? Should I be worried about how quickly the vaccines have been developed?

The vaccines will only be approved for use once they have passed stringent safety tests. As is always the case with new vaccines, we will learn more about the long-term safety of the vaccines through long-term clinical studies.

The speed of development might make people concerned, but corners have not been cut. During the development of the Covid-19 vaccines, regulators and researchers have worked in together to avoid delays. But before they can be used, the vaccines must pass all the same safety tests as for any other vaccine. The BBC has a helpful explanation of the safety checks.

Oxford University have published a short film entitled ‘How to make a vaccine in record time’.

Are there any side effects to the vaccines?

As with other vaccines, there may be mild and short lasting side effects to the Covid-19 vaccine such as having a sore arm or feeling tired for a day or two. (see MHRA safety monitoring and analysis). These can be treated with paracetamol and should wear off quickly. There is no evidence that side effects are worse for people with underlying conditions such as kidney disease or based on any medication they are taking.

The MHRA encourages people to report suspected side effects to the vaccine on their Yellow Card reporting site.

The Government have published information for older people and the general population on what to expect after your Covid vaccination.

Astrazeneca/Oxford vaccine and rare blood clots

People aged under 40 with no underlying conditions will now be offered an alternative vaccine to the Oxford/AstraZeneca (AZ) vaccine where this is possible. This follows a review of data on an extremely rare blood clot with low platelet count reported after first exposure to the AZ vaccine, with a slightly higher incidence in younger age groups. As the risk of serious disease from Covid-19 is lower in people aged under 40 with no underlying health conditions, the JCVI conclude that, on balance, an alternative vaccine is preferable in this group.

The balance of risks and benefits is different in people with underlying health conditions such as kidney disease, because they are at greater risk from serious illness if they catch Covid. Therefore, this advice does not apply to people aged under (or over) 40 years who have underlying health conditions. In this group, the JCVI consider the benefits of prompt vaccination with the AZ vaccine far outweigh the risk of adverse events.

People who have had a first dose of the AZ vaccine should continue with this vaccine for their second dose, except for the very small number of people who experienced blood clots with low platelet counts from their first vaccination.

The MHRA advises that the estimated risk from these clots remains extremely rare overall. By 31 March 2021, 20.2 million doses of the AstraZeneca vaccine had been given in the UK meaning the overall risk of these blood clots is approximately 4 people in a million who receive the vaccine.

Blood clots have also been reported among people with Covid-19. More than a fifth of hospitalised patients with COVID-19 have evidence of blood clots, and the presence of these almost doubles the risk of death.

Anyone who has the following symptoms four days to 4 weeks after vaccination is advised to seek prompt medical advice:

Mild flu-like symptoms, including headache, chills and fever remain one of the most common side effects of any COVID-19 vaccine. These generally appear within a few hours and resolve within a day or two.

Pregnancy predisposes to thrombosis, therefore women should discuss with their healthcare professional whether the benefits of having the vaccine outweigh the risks for them.

There are no known factors which put people more at risk of this extremely rare blood clot.

Are the Covid-19 vaccines live? Could the vaccines cause rejection of my transplant?

None of the Covid-19 vaccines currently in development are traditional “live” vaccines. The Oxford/Astra Zeneca vaccine uses an adenovirus, but its genes have been edited so it cannot replicate and cause infection.

There is a theoretical concern with all vaccines that they might damage transplanted kidneys or cause rejection because they stimulate the immune system. This has never been proven to happen with other vaccines, which all work by stimulating the immune system. The benefits of reducing the known risk of Covid-19 for kidney patients outweigh concerns about a theoretical risk and your kidney team recommends that you consider having a vaccination.

A small US study of 187 people with kidney transplants, carried out a week after they received the Pfizer or Moderna vaccine, found there were no cases of acute rejection, allergic reactions or neurological diagnoses (Guillain-Barre syndrome, Bell’s palsy or neuropathy).

How long should I wait after a transplant before receiving the vaccine?

It is recommended to wait until your immunosuppressant is at maintenance level. This may be up to twelve weeks after your transplant when your medicines are at a baseline. Different people may be vaccinated at different times depending on their clinical circumstances and it best to discuss with your doctor. There is no evidence that the vaccines will lead to a loss of transplant.

Do I need to change any of my medications such as immunosuppressants when I receive the vaccine? Will the vaccines interact with any other medicines?

You should not change or stop any of your medications without consultation with your healthcare team.

There is no evidence that the vaccines interact with other medicines. Your doctors will advise you if there is anything that you should be concerned about.

Should I have the vaccine if I am waiting for a transplant?

Yes, all of the vaccines are safe if you are waiting for a transplant.

What are the dosage intervals for the vaccines?

The Pfizer, AstraZeneca and Moderna vaccines both require two doses initially. The initial dosing intervals of between 3 and 4 weeks was extended to between 4 and 12 weeks for important public health reasons. Although two doses are needed for optimum protection, the JCVI advised that the first dose gives considerable protection for the general population at least in the short term (see this research). Therefore, they advised moving to a 12 week interval would protect the greatest number of at risk people in the shortest possible time.

On 14 May 2021, the Government announced that due to concern about the new variant, those in priority groups 1-9 will have their 2nd dose of Covid-19 vaccines brought forward from 12 to 8 weeks after the 1st. People who need to have their second dose rearranged will be contacted by the NHS.

Amongst kidney patients, some early research reports a weak antibody response for some people after the first vaccine dose and a better response after the second, although this does not give the whole picture on how well somebody could fight off Covid-19. Currently we cannot be sure whether a later or earlier second dose works better for kidney patients. Ongoing research will inform decisions about best timing for the second dose. Therefore, it is recommended that until the science is clearer, kidney patients (including transplant patients) should have their second dose when scheduled through current systems.

We do anticipate further changes to what is said here as our understanding evolves and it remains vital to have your second dose of the Covid-19 vaccine.

Will there be a booster programme/third dose of the vaccine?

The government has purchased an additional 60 million doses of the Pfizer vaccine to be used alongside other vaccines to support preparations for a booster programme, from the Autumn. This programme will be targeted at those most vulnerable to make sure they have the strongest possible protection from Covid-19.

A small US study of 30 patients suggests a third dose of Covid-19 vaccine can increase the number of antibodies produced for some kidney transplant patients who had not mounted a strong response previously. Kidney Care UK is continuing to ask Government whether immunocompromised people will be prioritised for a third dose and will publish any news as soon as possible.

We will publish news about a potential booster programme as we learn more and Kidney Care UK will continue campaigning for kidney patients at higher risk from Covid to be prioritised for a booster vaccination.

Is it recommended some patients receive the second dose within 3 or 4 weeks rather than 12 or 8?

Public Health England published guidance on the vaccination of people who are about to start taking immunosuppressants which may affect a small group of kidney patients. It advises that ideally both doses should be given before the immunosuppressant treatment starts. The first vaccination should be considered at least two weeks before the immunosuppressant treatment starts and the second vaccine should be given within the minimum recommended time (3 or 4 weeks after the first). This is because the immune system may respond better to a vaccine given before immunosuppressant treatment starts.

This may affect some kidney patients, including those with are due to start immunosuppressants for specific conditions. Any decision about timing of vaccinations will be a clinical decision taken by your doctor in discussion with you. Your doctor will advise you if the date of any scheduled vaccination appointment needs to change.

This does not affect those who are already taking immunosuppressants, such as people with a transplant. If you are already taking immunosuppressants the timing of your second dose will normally be the same as for the general population (between 4 and 12 weeks after the first dose).

Should I receive the same vaccine for both doses?

Whichever brand of Covid-19 vaccine is given at the first injection, the same brand of Covid-19 Vaccine (and not another vaccine against Covid-19) should be given for the second injection. However, a research study has begun looking at whether using a different vaccine for the second dose works as well as using the same vaccine for both doses.

What safety measures should I be taking once I have received the vaccine and the vaccine programme is rolled out more widely?

The vaccine is a vital step but it is not an immediate way out of the restrictions. Clinically Extremely Vulnerable people are advised to continue following the CEV guidance in place in their area both their first and second dose of vaccination. This includes working from home if possible (and if you are advised to shield) and Kidney Care UK Advocacy Officers can help with this if there are any issues with your employer.

Once the vaccination programme rolls out more widely, a gradual return to usual activities will probably be best and you must follow government guidance. Vaccinated people may still be infectious, although much less so than unvaccinated people (see Public Health England research for more details). It would be sensible to wait until high numbers of people in the general population have had the vaccine and infection rates in your community are low before getting out and about too much.

As more is learnt about how well different groups of kidney patients respond to the vaccine, you may like to speak to your doctor about your likely level of protection and the measures you may choose to take to reduce your risk from Covid.

Should I take the vaccine if I am pregnant, trying to become pregnant or breastfeeding?

The Joint Committee on Vaccination and Immunisation (JCVI) updated their guidance on 16 April and advise that women who are pregnant should be offered vaccination at the same time as non-pregnant women, based on their age and clinical vulnerability. This follows a review of the evidence which showed no evidence of safety concerns relating to the use of the vaccines during pregnancy. There are no safety concerns about using any of the vaccines in pregnancy, but most of the available data relates to the Pfizer and Moderna vaccines, therefore JCVI recommends these are offered to pregnancy women. However, people who have already had a first dose of the AstraZeneca should continue with this vaccine.

There is no known risk with giving inactivated virus or bacterial vaccines or toxoids during pregnancy or whilst breast-feeding. There also is no evidence that any of the UK vaccines can affect fertility. The theory that immunity to the spike protein could lead to fertility problems is not supported by any evidence. It is safe to have the vaccine if you are trying to get pregnant or are breastfeeding. In response to misinformation about vaccination and fertility, the Royal College of Obstetricians and Gynaecologists with the Royal College of Midwives has spoken out to explain this. Women should speak to their clinicians if they have any concerns relating to the Covid-19 vaccines

Scams

We are hearing from you about scammers in relation to your vaccine appointments. Remember, the vaccine is only available on the NHS and is free of charge. If you receive an email, text message or phone call pretending to be from the NHS and you are asked to provide financial details, this is a scam. You can get more information and report scams to Action Fraud.

Kidney Care UK and Renal Association Covid-19 Question Time patient information webinars

Since August 2020 the charity has run a series of webinars – we encourage you to review them, see the summary reports and share them with others, should you have further questions. The information from each webinar reflects knowledge and guidance at that time. The most recent sessions have included vaccination in some detail.

Covid-19 and Dialysis - 19 August 2020. Panel members Dr Andrew Frankel from Imperial Healthcare in Hammersmith, and Nurse Consultant Karen Jenkins from Kent and Canterbury Hospital, supported by Dr Rebecca Suckling from Epsom and St Helier Hospital answering the questions on the chat.
Covid-19 and Transplantation – 28 September 2020, with panel members transplant surgeon, Dr Rajesh Sivaprakasam from Barts Health NHS Trust and Lisa Burnapp, clinical lead for living donation at NHS Blood & Transplant, with Dr Rebecca Suckling from Epsom and St Helier Hospital answering the questions on the chat
Covid-19 - Treatment and vaccination 30 November 2020. This event added Professor Richard Haynes from Oxford MRC as we addressed questions about treatment and the Recovery Trial. Drs Andrew Frankel and Rebecca Suckling again joined us on the panel. This webinar was 2 days before the Pfizer vaccine was approved for use by the MHRA and so was very timely, very well-attended and Dr Suckling’s fingers flew to answer over 100 questions during the event
Covid-19 and Vaccination - 29 January 2021. As vaccination progressed more and more patients were asking questions so this webinar attracted a record number in advance (over 100) and we closed the bookings at 568 as the number of attendees permitted on the Zoom platform is 500. The panel included Dr Suckling and Dr Fiona Harris, both from St Helier hospital who answered about 150 questions live. Speakers were D Frankel, Professor Haynes and Dr Joyce Popoola from St Georges Hospital in London.
Covid-19, vaccination and the BAME Community - 9 February 2021, Kidney Care UK, the Renal Association and the British Renal Society, supported by Gift of Living Donation (GOLD) and the African Caribbean Leukaemia Trust (ACLT), hosted a free Zoom webinar for patients, carers and health professionals on the topic of the Covid-19 vaccination and chronic kidney disease. The specific focus of this session was on key questions asked by people from the BAME community – it has been published with clips from experts and faith leaders. We encourage you to view and share them.
Covid-19 and lifting lockdown – 30 March 2021. This webinar answered the many questions kidney patients have, as the vaccine rollout continues and shielding is paused. On this occasion, because of a technical glitch we do not have the recording of the event available and so have provided a slightly longer report.

Dialysis

Kidney Care UK, the Renal Association, the British Renal Society and the Association of Nephrology Nurses UK held a webinar about Covid-19 and dialysis in August 2020. The recording of this and a summary of the discussion can be found here (please note information was correct at time of recording).

I am on dialysis - am I at risk?

People on dialysis are at increased risk of severe illness from Covid-19 and are included in the clinically extremely vulnerable group. Guidance has been published to provide renal staff with practical advice to minimise the risk of Covid-19 transmission within both in-centre and satellite adult haemodialysis units.

The Renal Nutrition Group have written some guidance for patients on haemodialysis on the importance of managing your fluid and potassium restrictions

Personal protective equipment for people on dialysis

The UK Renal Association recommends that, because people on dialysis are in this extremely vulnerable group and are also often with others when travelling and receiving treatment, they should be provided with fluid-resistant surgical face masks. These are for use when travelling to and from dialysis, throughout the dialysis treatment, and in waiting and assessment areas used before or after treatment. It is important to wear these masks wherever possible, for the protection of the patient, staff and other people using the dialysis unit. In addition, Government guidance states face coverings are mandatory for everyone attending a hospital in England as an outpatient or visitor.

Government guidance states that all staff treating and caring for people on dialysis (as a group identified as extremely vulnerable to Covid-19) should as a minimum, wear single use disposable plastic aprons, gloves and surgical mask for the protection of the patient. Surgical masks are mandatory for all NHS staff in England, in all areas and at all times.

Can I eat and drink when I have a face mask on during dialysis?

The Renal Association, with the Renal Nutrition Group, have published guidance on eating and drinking during hospital or satellite unit based dialysis . This confirms that is should be the patient’s decision whether to eat or drink, once they understand how to do so safely. It highlights that, if you decide to eat or drink, you can take off your mask but must immediately put it back on after eating or drinking. You should use hand sanitizer before you take your mask off and before putting it back on. It is particularly important that when you take your mask off you ensure that you keep a two metre distance between you and all other people on the unit. This includes other patients on dialysis and your dialysis nurses. This also applies in units run by Fresenius.

How will I get to dialysis?

You will still get there in your normal way, unless advised otherwise.

In March 2020 NHS England issued guidance on transport stating that people going to dialysis must be treated as a priority group. This guidance was updated in December 2020 and states that during peaks of infections either locally or nationally, patients who have been identified as ‘clinically extremely vulnerable’ and are following shielding advice but need to attend essential ongoing care appointments in hospital or community settings with no access to private transport will be entitled to PTS. This includes patients with life-sustaining care needs such as renal dialysis and cancer treatments.

Measures are in place to make sure transport services are provided in a way that protects patients, including patients with Covid-19 symptoms being transported individually and careful cleaning of vehicles.

In Wales, Non-Emergency Patient Transport Service (NEPTS) will continue with appropriate safety measures and the transport re-imbursement scheme is available for all patients who were in receipt of transport to attend unit haemodialysis from NEPTS. If you need more information, please don’t hesitate to ask your nursing team for more information.

I am on home dialysis - what should I be doing?

If you are on peritoneal dialysis and have frequent blood tests, you may need to make some changes such as having your tests locally rather than going to hospital. If you need support please contact local voluntary groups such as Covid Mutual Aid UK or NHS Volunteers is still available in England.

Home dialysis supplies

Guidance for drivers states patients will be contacted and asked about how they would like their delivery to be made. Supplies will be taken to the usual location in a patient’s home whenever this is necessary. Drivers will receive training in the guidelines and also how to reduce risk of infection, by using gloves and hand gel and keeping a two metre distance between the driver, patient and any household members. All direct access deliveries to garages or sheds will remain unaffected.

Decisions about the provision of care

Some people may have been feeling anxious following media reports about how decisions are made relating to provision of treatment. The Government have issued a letter to reassure people that decisions about care and treatment will always be made on an individual basis. They emphasise that blanket policies are inappropriate whether due to medical condition, disability, or age. This is particularly important in regard to ‘do not attempt cardiopulmonary resuscitation’ (DNACPR) orders, which should only ever be made on an individual basis and in consultation with the individual or their family.

The Renal Association (RA) has also published guidance making it clear that having kidney failure and Covid-19 should not in itself be a barrier to access to intensive treatment unit (ITU) and ventilation. There is no evidence to support this decision and the RA note that survival of people with kidney failure, whether on dialysis or with a transplant in ITU is similar to the general population.

Guy’s hospital have produced some useful videos which provide more information about Do not attempt resuscitation orders and decisions about treatment.

Carers/relatives

I am looking after my relative/I am a carer - what should I do?

If you do not live with the person you care for, you should still visit them to provide essential care, but be sure to carefully follow advice on good hygiene.

Wash your hands on arrival and often, using soap and water for at least 20 seconds or use hand sanitiser.
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.
Do not visit if you are unwell and make alternative arrangements for their care.
Provide information on who they should call if they feel unwell, how to use NHS111 online coronavirus service and leave the number for NHS 111 prominently displayed.
Find out about different sources of support that could be used and access further advice such as that on creating a contingency plan from Carers UK
Look after your own well-being and physical health during this time. Further information on this is available at the Carers UK website which has detailed information and support for carers of vulnerable people.
The Government have published Guidance for those who provide unpaid care to friends or family.

I have professional care staff coming into my home

Professional health and care staff have very clear guidance on how to avoid spreading the Covid-19 infection and protect their clients as well as their own families.

It is vital they stringently follow the hygiene rules and you should not be afraid to insist that they do so. If you have any issues or concerns raise them with the care worker or their employer.

What about children with kidney disease?

We know that children and young people tend to do better than adults in terms of length of illness and severity of symptoms when Covid-19 is diagnosed. Most children who have contracted the virus and been completely asymptomatic (had no symptoms at all). Like other similar winter viruses however, there have been cases of children requiring higher levels of care with Covid-19.

The British Association for Paediatric Nephrology have published updated information for families of children with kidney disease. It contains the latest statistics, but the advice has not changed substantially. The evidence shows the risk to children from Covid-19 is generally low. However, those who are considered clinically extremely vulnerable, and should follow their local rules regarding shielding, are those who are immediately post-transplant, on certain doses of immunosuppressants, or as advised by your kidney doctor.

Specialist children’s kidney doctors have also advised that children who are due to receive a living donor kidney and their families should shield for 14 days before the transplant date. Donor wait-listed children may need to shield depending on their risk, so families in this situation are asked to discuss with their transplant team.

Government guidance for children who had previously been advised to shield has also been updated, which means many children will be taken off the list of people advised to shield. However, children will only be removed from the shielded patient list by their GP or specialist doctor following consultation with the child and their family. Specialists and GPs will be asked to contact children and their families to discuss this if they have not done so already, so families do not need to take any immediate action and should continue to follow guidance for clinically extremely vulnerable people until advised otherwise. If you have any questions you should contact your hospital kidney team.

See the section on Going to School for more information about attending school during the Covid-19 outbreak.

The Royal College for Paediatric and Child Health has produced lots of useful advice for families in all 4 UK countries during the pandemic, and how and when to seek advice what to do if your child becomes unwell during the Covid-19 outbreak.

The National Institute for Health and Social Care has issued some Covid-19 guidelines on children and young people who are immunocompromised. Kidney Care UK was among the organisations who fed into this work.

Recommendations for women with kidney disease who are currently pregnant, or considering pregnancy, during the Covid-19 pandemic

We recommend you read the advice about pregnancy and Covid-19 available from the Royal College of Obstetricians and Gynaecologists.

Extremely vulnerable patients

Certain groups of women who are kidney patients are classed as clinically extremely vulnerable or clinically vulnerable, irrespective of pregnancy, and should continue to follow the appropriate guidance in place in their local area.

Women who are currently pregnant

The Royal College of Obstetricians and Gynaecologists state that studies from the UK show that pregnant women in the general population are no more likely to catch COVID-19 than other healthy adults. Pregnant women who do catch COVID-19 may be at increased risk of becoming severely unwell compared to non-pregnant women, particularly in the third trimester. Pregnant women have therefore been included in the list of people at moderate risk as a precaution. Pregnant women with kidney disease may also be in the clinically extremely vulnerable group depending on their health status.

There is limited information on the risk from Covid-19 in kidney patients who are pregnant and interactions between kidney disease, pregnancy and coronavirus have not been excluded.

Careful monitoring during pregnancy remains important for women with kidney disease. You may be advised by your local team that most appointments can be conducted by telephone. If you have concerns about your pregnancy, contact your antenatal clinic assessment team for advice.

Women who are considering a pregnancy

Women with kidney disease who are considering pregnancy should take note of the uncertain but possible increased risks to their and their baby’s health associated with Covid-19.

It may become difficult to provide enhanced pregnancy care for women with kidney disease during the current pandemic so strong consideration should be given to postponing planned pregnancies. Women who intend to postpone planned pregnancies should use robust contraception. Further information is available from the Royal College of Obstetricians and Gynaecologists.

Please see our section on vaccines for information about the Covid-19 vaccine and pregnancy.

Transplantation

We ran a Covid-19 Question Time webinar on transplantation – click on the link to read the report and answers to your questions (which should be read alongside current Government advice). Please note the information provided within the webinar reflects knowledge and guidance at that time.

Outpatient appointments

Regular outpatient appointments may need to be changed or postponed. Your appointments may need to be carried out over the phone or online and you may be asked to receive your immunosuppressants via home delivery. You will be advised by your own unit if this is the case.

Living donation

Due to the reduced number of Covid infections all centres are now open for living donations, although restrictions may be in place in Belfast. The current list of centres and restrictions is here.

Everyone going into hospital for planned surgery will need to self-isolate for 14 days before admission. Your hospital will provide further details.

The latest NHS Blood and Transplant (NHSBT) bulletin for clinical professionals is here. NHSBT are working hard to use what they learnt in the first wave of COVID-19 about supporting the continuation of safe transplantation wherever possible.

People on the transplant waiting list

We are encouraged to report that all transplant units are open across the UK (some restrictions in place in Belfast) and transplant referrals are beginning to return to normal levels. You can find the latest information around centres here. Your unit should let you know about the plan for you and please contact them if you have any queries. NICE (the National Institute for Health and Social care Excellence) has issued advice for clinical teams caring for people waiting for or living with transplants and people who have donated a kidney (live donors). Kidney Care UK contributed to this advice. For deceased donation, all organ donors will be assessed in line with advice from NHSBT to ensure the procedure is safe.

Barts Healthcare have published a video in which a couple discuss their experience of a transplant operation taking place during the COVID outbreak and what was put in place to keep them safe.

I am a living kidney donor – am I at high risk?

Being a living kidney donor does not increase your risk of having more serious illness with Covid-19. This is because ability to fight infection is not affected by kidney donation itself.

Due to reports of incorrect information circulating regarding additional risks from Covid-19 to healthy living donors with a single kidney, NHS Blood and Transplant (NHSBT) have published a statement (please note this is written for clinicians) again confirming that this group do not need to shield as they are at no greater risk than anyone else of contracting COVID- 19 or the symptoms associated with it. If someone has other health issues that classify them as high risk, they may be in the clinically extremely vulnerable group.

Other conditions

My doctor has advised that my vasculitis/lupus/glomerulonephritis/nephrotic syndrome is flaring/much worse and I need to start a new course of treatment – should I be shielding?

At present, for people who require 'induction' immunosuppression for new or flaring vasculitis, lupus or nephrotic syndrome, our knowledge about the additional risks of becoming severely unwell were they to catch coronavirus is limited. Some research has suggested that people taking higher doses of steroids (e.g. more than 10 to 15 mg/day prednisolone or equivalent) may have a poorer outcome following Covid-19 infection. We would recommend a discussion between you and your clinician regarding the option of treating your condition with lower doses of (or no) steroids. Where this is not possible, it is our recommendation that you should shield if practical to do so. If not practical we recommend that you, those who you live, and your employer follow the advice for those at highest risk.

I have had my vasculitis/lupus/autoimmune kidney disease for some time and am on stable treatment and my doctor says I’m in remission – am I safe to go back to work?

The majority of people with vasculitis, lupus, or autoimmune kidney disease (glomerulonephritis) who are in remission and are taking 10mg or less of prednisolone a day (or equivalent) are considered to be at lower risk of a poor outcome following Covid-19 infection. Exceptions to this would be those aged over 70 years, those who are clinically extremely vulnerable or advised to shield for other reasons, and those aged 60 to 69 or with two or more additional risk factors (male, non-white ethnicity, diabetes or a body mass index (BMI) >35 kg/m2).

I only have one kidney – am I at risk?

Having one kidney does not put you at increased risk on its own. If your kidney function is normal you will not be at increased risk. For some people who have reduced kidney function (chronic kidney disease) your risk is increased due to the chronic kidney disease rather than having one kidney. If your kidney was removed for health reasons, it is possible that the health reasons leading to the kidney removal will increase your risk and you should follow appropriate government guidance.

I have Polycystic Kidney Disease (PKD) Am I at risk?

If you have PKD, whether or not you’re at increased risk of getting seriously unwell from Covid-19 depends on your kidney function. There is nothing to suggest that people with PKD and normal or only mildly reduced kidney function are at higher risk of getting seriously unwell from Covid-19 than the general population. Please see the section on the stages of Chronic Kidney Disease for more information as this applies to PKD. The PKD charity has some further information on their website

I have high blood pressure, am I at risk?

Having high blood pressure (hypertension) on its own does not make you at a high risk of serious complications if you get infected with Covid-19. The national and international societies representing specialists in high blood pressure have said there is no evidence that more people with high blood pressure have severe disease with Covid-19. If any changes become apparent, this advice will be updated as advised by our medical colleagues. You should continue to take your medication as prescribed. It may be that you have other underlying conditions such as chronic kidney disease or diabetes which may put you at high risk. If this is the case you should follow the government advice.

Medications

Will taking my immunosuppressive medications put me at higher risk from COVID-19?

Unless you are advised otherwise, it is very important that you continue to take all your immunosuppressive drugs because the health risks associated with a flare up of your disease are likely to be greater than the risks associated with COVID-19. Indeed, keeping your disease inactive reduces the need for increased doses /stronger drugs needed for acute flares.

Should I be taking vitamin D supplements to help prevent Covid-19?

The NHS service for supplying free vitamin D to people at high risk from Covid has now closed.

Vitamin D is good for you and can help support your immune system and possibly help resist infection with Covid. So it is important to have sufficient vitamin D. You may already be prescribed supplements, for example Adcal, and you should check with your doctor before taking any additional supplements.

Some transplant units are more hesitant about prescribing vitamin D to people in the first year after a kidney transplant, so if this is the case do check with your kidney team and you may be advised not to take vitamin D supplements.

It is important to note that there is active vitamin D, which is often prescribed by kidney units in medicines like Alfacalcidol and Calcitriol. It is subtly different from natural vitamin D. You can be low in natural vitamin D even if you are taking active vitamin D. So do check with your kidney doctor about any natural vitamin D supplement you may already be taking and what you should do to make sure your levels are correct.

The Government have published more information about taking vitamin D supplements safely, which reiterates that people with kidney disease should talk to their doctor before taking it.

I have high blood pressure, should I stop or change my blood pressure medications?

There have been some reports about blood pressure medications. At the present time there is no evidence that any particular group of blood pressure tablets, including angiotensin converting enzyme inhibitors or angiotensin receptor blockers, affect the risk of getting infections or the severity of those infections. It is important to continue all your normal medications including your blood pressure medications and not to stop any of your medication without discussing it with your doctor.

Can I take ibuprofen or other non-steroidal anti-inflammatory drugs (sometimes known as NSAIDs)?

Doctors recommend that people with chronic kidney disease or a kidney transplant always avoid taking drugs like ibuprofen for pain or high fever and this remains the case. Please use paracetamol to treat high temperatures and for your pain relief.

Antibiotics or any other new medication you are prescribed

Transplant immunosuppression medicines such as tacrolimus, ciclosporin or sirolimus can interact with other medicines. It is important that when any new medication is started you tell the prescriber that you are taking one of these immunosuppressants.

Other medicines which can cause problems with tacrolimus, ciclosporin or sirolimus include:-

Some antifungal and antibiotic medications - for example fluconazole and clarithromycin.

During the period of Covid-19 you may have a chest infection where antibiotics are required. If clarithromycin is used you may need a dose reduction in tacrolimus (or ciclosporin or sirolimus) but do not change anything unless asked to by your renal team.

Your prescriptions

If you are self-isolating or shielding, someone else needs to collect your medicines from the pharmacy, or ask if they have a local delivery service. Also do keep an eye on your supplies so you order repeat prescriptions in good time. If you are having difficulty getting your medicines we recommend contacting a local voluntary group. If you receive your immunosuppressant or specialist medications through a hospital, pharmacy teams are calling patients to check on supplies. Don’t wait to ring them up to ask for a repeat prescription if you are running low.

Research and how data on kidney patients is being used to support your care

The UK Renal Registry (UKRR) is using data from renal units and hospitals, within strict confidentiality rules, to learn more about how Covid-19 is affecting kidney patients. Please be assured that this information will be very widely shared and underpins efforts by staff and patients to continue to stringently adopt all the measures we know can keep people safe from infection with Covid-19.

A study published in October 2020 using the UKRR data looked at outcomes for people who were on in-centre haemodialysis (ICHD) in England and Wales, one week after testing positive for Covid-19. It found people on ICHD were at much higher risk from Covid-19 than the general population and, similar to the general population, older people on ICHD were more at risk than younger people on ICHD. Out of the 718 adults on ICHD aged 18-59 who tested positive to Covid-19, there were 86 deaths (12%). Of the 1,190 people on ICHD aged 60-79 who tested positive to Covid-19, 340 died (29%), and of the 428 people on ICHD aged 80 who tested positive to Covid-19, 187 died (44%).

As well as increasing age, how long the person had been on dialysis increased the risk of the person dying and there was some weak evidence that people from an Asian background were at greater risk of dying should they contract Covid.

Regular surveillance reports are published by the Renal Association.

NHS Blood and Transplant also publish weekly data on rates of Covid-19 in transplant recipients. 2,921 cases of Covid-19 among kidney transplant recipients were reported to NHS up to 12 May 2021. This is 7.2% of the 40,678 people with a functioning kidney transplant. Sadly, 530 (18.1%) of the people testing positive for Covid had died.

If you have questions about how the UKRR are using information on patients please contact them directly via the UK Renal Registry website.

Other research

NHSBT is doing a range of research on Covid-19, including on blood plasma and using blood samples to estimate virus spread, which is regularly updated

Kidney Care UK has joined researchers at King’s College London, as well as other patient charities, to raise awareness of a research project in which people are asked to report on their health on a daily basis via a smartphone app. This will allow the researchers to track any symptoms of Covid-19 that people are experiencing and understand what some of the early symptoms could be. They would particularly like people aged over 70 to join in, as not many from this age group as joined the project so far. The developers have also added a function to the app so that you can also report on other members of your household who do not have access to a smartphone. More information about the project is available from the research team.

Opportunities for research participation are listed on our Research Opportunities page.

Employment and benefits

Each UK country’s government website has advice about employment for clinically extremely vulnerable people, which you should read: Northern Ireland, Wales, England, Scotland

Kidney Care UK is leading a coalition of 18 healthcare charities to ask employers to keep their immunocompromised staff safe at work, as there is evidence that the Covid-19 vaccines may not work as well for these individuals. Those who are concerned that they may not be fully protected by the Covid-19 vaccine may like to download a copy of the open letter written by the charity coalition and share directly with their employer.

The current advice across the UK is that everyone who can work from home should continue to do so. Advice that clinically extremely vulnerable (CEV) people should shield has now paused across the UK. People are now advised to work from home if they can, but may go into work if it is safe to do so and they can travel in a safe way. Employers are asked to do all they can to support this, including moving the CEV person to another role if required.

If your workplace is not Covid-safe and you cannot work from home you may be eligible for the furlough scheme, which is available until September 30 2021 (this has been confirmed for England and we will seek confirmation for Wales, Scotland and NI). SSP and ESA will no longer be available for reasons of shielding after 1st April 2021 in countries where shielding has paused.

The Renal Association recommends that all patients within the first three months of a kidney transplant should continue to follow full shielding, including not attending the workplace.

Supporting clinically extremely vulnerable people who are continuing to go to work

Outside of lockdowns, where clinically extremely vulnerable people are continuing to go to work, it is extremely important that they take careful precautions. If they cannot work from home, clinically extremely vulnerable people should be provided with the safest onsite roles that enable them to maintain social distancing.

The Government guidance for each UK nation explains how to ensure a workplace is COVID-safe. It covers different workplaces (e.g. factory, office) to help an employer in its risk assessment responsibilities. The Health and Safety Executive have provided practical information on how to make work and the workplace safe.

The Scottish government has produced an occupational risk assessment tool for you to go through with your employer before you return to work. The Welsh Government have also produced a workforce risk assessment tool.

More detailed support with risk assessment is available from the University of Glasgow and The Society of Occupational Medicine COVID-19 return to work guidelines which, for the first time, take account of community prevalence, vaccination status and previous COVID-19 infection in the risk assessment. The guide describes the multiple factors which should be considered in the COVID-19 return to work risk assessment. These include community infection levels, individual vulnerability (Covid-age), workplace / commute transmission risk, workers' concerns / expectations and more recently, vaccination and previous COVID-19 infection. The guide includes a stepwise approach to inform decisions and facilitate safe return to work. The guidelines are intended for workers, employers and health practitioners. Unfortunately, only 50% of UK workers have access to occupational health, so for many workers their risk assessment will have to be done by their GP, employer or themselves and the guidance will help all parties understand their risks and the appropriate work-related control measures.

The guide is based on the ALAMA tool which can estimate your ‘Covid age’ to predict your vulnerability to Covid. We recommend you read the guidance first, before using the Covid-age tool. These tools can help you decide how safe it might be for you to return to the workplace and we recommend you follow these three steps to help you make a decision:

Calculate your ‘Covid age’
Take a look at the above mentioned return to work guide and
Look at the current level of Covid in your area

Following these steps should give you an idea of your likely actual level of risk, depending on the job you do. As an example if you have an egfr between 30-60, high blood pressure and a kidney transplant this gives you a high Covid age and makes you vulnerable – but if the infection level in your area is low and you work in a small office with very little contact with others and you have had both your vaccination doses, this drops your risk right down.

We have some tips for you to consider for your return to work

Talk to your employer early – they are likely to want to do what they can to support you
Ask your employer to carry out a risk assessment and share the results with you
Speak to your kidney doctor, they will be able to provide a letter for your employer about your individual risk.
Consider whether there are any alternatives to public transport (car share with one other person) or whether you can travel at quieter times (or see Access to Work)
Ask your employer/HR dept. to run a session on supporting vulnerable colleagues, so all colleagues are aware of appropriate action to take.
Use social media/friends/other groups to find out what people in similar situations are doing
Speak to your union/ACAS about any worries
Explore whether the Access to Work fund could fund adjustments required to allow a safe return to work (e.g. special equipment or safe travel to and from work).
There is a scheme for accessing free lateral flow tests for workplaces in England, Northern Ireland, Scotland and Wales.

The Renal Association have published template letters that patients (and their families) will be able to show their employers to help them understand their employee’s individual risk and the action that could be taken at the workplace to reduce that risk. The template letters should be completed by your kidney doctor, using information about your individual risk. This information will come from an individual risk tool developed by the Renal Association.

We have this general guidance on employment rights. If you have any issues you may wish to speak to your trade union helpline or union health and safety representative if there is one at your workplace. The Health and Safety Executive have more information online and also have a telephone helpline: 0300 790 6787 (Monday to Friday 8.30am to 5pm). We understand that people are very concerned about safety at work and have raised this urgently with the policymakers.

ACAS (The Advisory, Conciliation and Arbitration Service) has advice for employees and employers about working safely during the Covid-19 outbreak and has advice about dealing with any workplace problems. They have a lot of information on their website or their helpline is available on 0300 123 1100 (8am – 6pm)

In Wales the Coronavirus Regulations impose a legal requirement on workplaces to take all reasonable measures to ensure a 2 metre distance is maintained between persons on their premises. Guidance has been produced to assist people in understanding what ‘taking all reasonable measures’ means and what to do if it is not possible to maintain a distance of 2 metres in certain circumstances.

Benefits

People with disabilities who need adjustments to help them continue working during the Covid-19 pandemic may be eligible for the Government’s Access to Work scheme. This can cover extra costs such as:

help with travel costs to and from work if it isn’t safe for you to use public transport
mental health support from the Mental Health Support Service, if you’re anxious about returning to work
a grant for special equipment if your homeworking.

Grants can be fast-tracked if you’re in the clinically extremely vulnerable group. You can apply here.

The Department of Work and Pensions (DWP) have made some changes to the way that the benefits system will operate. Information and advice can be found on the Government website page for Coronavirus and claiming benefits. You can also ask to be referred to a Renal Social Worker if you have questions about income support and benefits.

If you are prevented from working due to Covid-19 and are not eligible to receive sick pay or furloughed workers payment, you can apply for Universal Credit and/or New Style Employment and Support Allowance. Changes are being made to make it easier for those unable to work due to Covid-19 to make a claim.

If you are suffering from coronavirus or are required to stay at home and want to apply for ESA, the usual 7 waiting days for new claimants will not apply. ESA will be payable from day one.

You will be able to apply for Universal Credit and receive up to a month’s advance upfront without physically attending a jobcentre.

If you are considering making a claim for Universal Credit because of a change in your circumstances (e.g. reduced working hours) it is important to consider how this will affect any other benefits you are currently entitled to. Making a successful claim for Universal Credit will immediately end any current legacy benefits such as Working and Child Tax Credits, Income Related ESA, Income Based JSA, Income Support and Housing Benefit (Child Benefit and Council Tax Reduction sit outside of UC) and you will be moved onto Universal Credit. This may make a household worse off and protection for the amount of benefit you receive will not be available. It is very important that you carry out a Better Off calculation on a calculator such as Turn2Us Benefits Calculator and seek further advice if you are unsure.

Please see Government guidance for more detail and to make a claim.

For benefits and employment rights information for Scotland: Citizens Advice Scotland.

Guidance – Direct Payments

Advice has been published for people who buy care and support through a direct payment, as well as local authorities, clinical commissioning groups and those who provide care and support.

Statutory Sick Pay

Statutory Sick Pay (SSP) is available for those diagnosed with Covid-19 and those staying at home in line with Government advice even if they are not infected. This includes people who are self-isolating because they have been contacted through the Contact Tracing system after being in contact with someone who has tested positive.

SSP will be made available from day one rather than day four. If employees need evidence that they need to stay at home for more than seven days, they will be able to get this from NHS 111 Online instead of having to go to their doctor. The note can be emailed to the individual, a trusted person or direct to their employer.

Employers with fewer than 250 employees will be able to reclaim Statutory Sick Pay for employees unable to work because of coronavirus. This refund will be for up to two weeks per employee.

People who have tested positive for the virus or who have been told to self-isolate by NHS Test and Trace will be required by law to self-isolate, and a payment of £500 is available for those on lower incomes who cannot work from home and have lost income as a result. You should contact your local council for more information about how to apply. There are fines for breaching the rules or for forcing someone else to breach self-isolation.

Furloughed worker scheme

The Government’s Job Retention (furlough) scheme provides funding for a proportion of an employee’s wages.

The furlough scheme has been extended until the end of September 2021 (although employers may have to contribute towards the costs after July). Eligibility for the scheme includes people who are:

unable to work because they are clinically extremely vulnerable and the workplace cannot be made Covid-safe, or at the highest risk of severe illness from coronavirus and following public health guidance, even if shielding advice is not in place.
unable to work because they have caring responsibilities resulting from coronavirus (COVID-19), including employees that need to look after children or vulnerable people

This includes employees who have not previously been furloughed. Employers do not need to have used the furlough scheme previously to make use of it now.

Employers can:

fully furlough employees – this means the employee does no work for the employer
flexibly furlough employees – this means employees can work for any amount of time, and any work pattern and claim the grant for the furloughed hours, with reference to hours the employee would usually have worked in that period

Self-employed people

The Government have established a scheme to support those who are self-employed whose business is affected by Covid-19. The Self-Employment Income Support Scheme grant extension provides financial support to the self-employed in the form of grants, Government announced this support will be extended to September 2021, although with some changes. See Government guidance for full details and how to claim.

For immediate support, business interruption loans and Universal Credit are available to self-employed people.

Support with finances

The Covid-19 outbreak will have financial implications for many people. There is advice about what you may be entitled to and action you can take, for example finding out about mortgage holidays, at the Government backed Money Advice Service Coronavirus pages. This includes information about mortgage holidays offered by many banks and building societies as well as budgeting tips.

All UK domestic energy suppliers have signed up to an agreement to help people during these challenging times. The measures mean people on prepayment meters will have a range of options to ensure continuity of supply even if they cannot add credit, and people on credit meters (paying for energy used) will be offered support and will not be disconnected.

Travel

Travel for people on dialysis – dialysis away from your own unit. New guidance on dialysis away from base (DAFB) in the UK has been published to support kidney units to safely admit visiting dialysis patients, now Covid restrictions are easing. Kidney Care UK has contributed to this work, which is led by the Renal Association.

Units are asked to consider reopening to Dialysis Away From Base (DAFB) and let patients know whether they are open to it. Anyone wishing to travel should have a discussion with their clinical team as patients are vulnerable to COVID-19 infection and infections have occurred at dialysis units. This guidance only applies if shielding or local lockdown is not in place in base or destination units.

See our news story for more information

Managing anxiety and fear and staying safe online

It is very understandable that many of you are expressing anxiety over the Coronavirus (Covid-19). Renal patients are duly concerned regarding this disease and the potential effects on those with health vulnerabilities.

Support for kidney patients sadly varies immensely across the United Kingdom. At present it is almost a postcode lottery as to whether a patient can access free mental health support via either Primary or Secondary care.

As a starting point, we would advise that all patients contact their renal team to ask if their own Hospital has access to either a renal psychologist or renal counsellor. If not, there may be mental health services that are available within the Hospital Trust that the renal team can refer the patient to. If this support is not available, then please contact your own GP surgery to ask if your own Doctor can refer you to local Primary care mental health services.

We have a page with some tips on managing your anxiety
The Government have published guidance on the mental health and wellbeing aspects of the Covid-19 outbreak, with some advice about what can help and where to get more help.
We also have a page on mindfulness colouring
You may also wish to look at the Every Mind Matters website. This has advice about coping with anxiety as restrictions ease.
NHS Grampian have produced Tips on how to cope if you are worried about Coronavirus and in isolation
Salford University have produced information to help people stay safe online during this outbreak. This includes spotting and avoiding scams and managing the amount and type of information you are accessing online.
Which has also produced helpful information on avoiding scams during the COVID-19 outbreak.

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Managing anxiety and fear

Some tips on managing your anxiety

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