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

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

Updated 13 May

Do keep looking at this website and your question may be answered without needing to speak to your kidney specialist. However, if you still have questions then do get in touch with your hospital team or GP.

Government guidance changes often. Please refer back to this page as we will try to regularly update it in response to any developments. Because we’re frequently updating the guidance, if you want to share it please link to the page directly rather than quoting or summarising what we’ve said. If the page is not updating for you try clearing your cache/cookies and/or viewing it in incognito mode for your browser.

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Recent updates

Kidney Care UK’s next Covid Question Webinar will be held on Monday 16 May at 5pm. The panel will include kidney doctors and Jonathan Leach (NHS England Medical Director for Covid Vaccination) as well as a solicitor specialising in employment law to answer questions about Covid safety at work. Please sign up and submit your questions.
The Antivirals and Therapeutics Taskforce, set up to ensure patients in the UK can access safe and effective Covid treatments as soon as possible, are currently reviewing whether Evusheld protects against current variants, as the original clinical trials were done when Delta was the circulating variant; what the correct dosage would be; and that it does not contribute to the generation of new variants of Covid. They are also looking at how they may distribute the drug if it is effective. We know how important and frustrating this is for kidney patients, particularly those who may be less well protected. We are highlighting this to policy makers in all our conversations and asking them when we will know more about the availability of the drug to patients. We will update as soon as we know more.
New public health guidance for employers in England to reduce the spread of Covid in the workplace has been published. We have updated our Safe at work letter which people with kidney disease can share with their employer to support discussions on safety at work.
People in England eligible for Covid treatments (people with kidney transplants, on dialysis of with CKD 4 or 5) should use government issued lateral flow tests (LFTs) as soon as they develop Covid symptoms in order to provide access to treatments. This letter explains how the process will work. People at highest risk from Covid can order free LFTs here.
Some free testing will continue during April in Scotland and in Northern Ireland. In Wales the cut-off is July.
A Spring vaccine booster is now being offered to those over 75, those living in care homes and those aged over 12 who are immunosuppressed. This will be a fifth dose for people who are immunosuppressed. All eligible groups can access the Spring booster dose now as long as it is at least three months since their last booster, although for many people the gap will be closer to six months.
People in England can book Spring booster appointments online, attend a walk-in clinic, or telephone 119 to book an appointment. You should take medical documents (a doctor’s letter or prescription) confirming that you were immunosuppressed when you had your last vaccine dose.
In Scotland, Wales and Northern Ireland invitations for the booster will be sent out soon.
This NHS document explains which vaccine doses different groups are currently offered and the Kidney Patients' Covid Vaccination Guide below is a helpful vaccine summary for people with kidney disease.

Kidney Patients' Covid Vaccination Guide

Kidney Care UK is campaigning hard for better support for kidney patients, including those who are immunosuppressed. We are calling for a Minister to take responsibility for people who are immunocompromised and have written with a number of other charities and parliamentarians to the health secretary. Find out more about this here.

Contents of this page

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

What should I do if I have Covid-19 symptoms or have tested positive for the virus?

In summary:

If you have symptoms of Covid-19, take a PCR or LFT test as soon as possible to ensure prompt access to treatment.
If you test positive on a PCR or LFT, do not go into your renal unit or to dialysis until you have spoken to them and do not visit your GP, pharmacy or hospital in person. Regulations on self-isolation are changing so check the rules for your local area.
Inform your kidney doctor so they can help you manage the illness. This may include anti-viral tablets or an intravenous antibody infusion.
Read and follow NHS advice if you are managing your symptoms at home. If you live alone, ask a family member, friend or neighbour to check up on you via a telephone call or at the doorway (not face to face).

If you start to feel worse or more breathless, telephone your GP or kidney doctor.

Telephone 999 in an emergency if you are seriously ill.

Access to Covid treatments for CKD patients

People at highest risk from Covid are eligible for fast access to Covid treatments. This includes:

people with kidney transplants
people on dialysis
people with CKD stage 4 and 5.

These treatments work best if started promptly so you should test as soon as you can after symptom onset. The arrangements for accessing treatments vary between UK nations (see below).

In England, LFT tests have now been sent to people eligible for treatments to keep at home and use if they develop symptoms. Please contact 119 or your GP if you believe you are in this group and have not received LFT tests to keep at home by 11 April.

In all UK nations only Government supplied LFT tests can be registered and used to access treatments. Tests bought privately cannot be registered.

Covid symptoms action plan for England and Wales

If you are a transplant recipient, dialysis patient or have stage 4 CKD or stage 5 CKD:

Take a Government supplied LFT test as soon as you develop symptoms. You should not use PCR tests you were sent previously unless asked to by the NHS.
Register the result of the LFT test online or by calling 119. You will need your NHS number and your postcode.
If you are in England and have not been contacted within 24 hours of registering your positive test result contact your GP or hospital specialist or call 119.
If you are in Wales and have not been contacted within 48 hours of registering your positive test result, telephone 111.

If your LFT test result is negative but you still have Covid symptoms, you need to do three LFT tests over three days. So, if you did your first test today, you should do another test tomorrow and a test the day after. Report any positive tests and the NHS should contact you about treatment.

Covid symptoms action plan for Scotland

If you are a transplant recipient, dialysis patient or have stage 4 CKD or stage 5 CKD:

Take an LFT test or visit a PCR test site as soon as you develop symptoms (if you test positive on an LFT you do not need to wait for a PCR result before starting treatment, but you should still take a PCR in order to monitor response to treatment)
Register the result of the LFT test online or by calling 119. You will need your NHS number and your postcode.
If you test negative on an LFT but still have symptoms, get a PCR test to confirm the result.
If you test positive on an LFT or PCR test, telephone your health board and they will arrange an assessment for treatment.

Covid symptoms action plan for Northern Ireland

If you are a transplant recipient, dialysis patient or have stage 4 CKD or stage 5 CKD:

Take an LFT test or book a PCR test as soon as you develop symptoms (if you test positive on an LFT you do not need to wait for a PCR result before starting treatment, but you should still take a PCR in order to monitor response to treatment)
Register the result of the LFT test online or by calling 119. You will need your NHS number and your postcode.
If you test negative on an LFT but still have symptoms, get a PCR test to confirm the result.
You will receive a text message about your PCR test or lateral flow test result. If the test was positive you will then receive another text message advising that your local Trust will be in touch. If you do not receive this text message or you don't hear from your Trust, please contact your GP who can contact the Trust on your behalf.

Research into Covid treatments for other groups:

PANORAMIC is a UK-wide clinical study to find out how new antiviral treatments reduce the need for hospital admission in people aged over 50 and people with a pre-existing condition such as CKD. The treatments work best if started promptly so we recommend you get a test as soon as you develop Covid-19 symptoms. People can register for the trial once they have received a positive result on a PCR or lateral flow test. They will then be prescribed either a drug treatment or the current best standard of care. Find out more about how clinically vulnerable people with Covid can receive early treatment at home in our news update.

Government information on Covid treatments:

What are the symptoms of Covid?

a high temperature or shivering (chills) – a high temperature means you feel hot to touch on your chest or back (you do not need to measure your temperature)
a new, continuous cough – this means coughing a lot for more than an hour, or 3 or more coughing episodes in 24 hours
a loss or change to your sense of smell or taste
shortness of breath
feeling tired or exhausted
an aching body
a headache
a sore throat
a blocked or runny nose
loss of appetite
diarrhoea
feeling sick or being sick

The Zoe study team have published information about other potential symptoms of Covid to help alert people to a potential infection.

PCR tests and LFT tests

Free PCR testing is no longer available in England or Wales. They remain available for some people in Northern Ireland or Scotland – check here for details and to order a test.

From Friday 1 April, only the following groups will have access to free LFT tests in England should they develop symptoms of Covid:

People eligible for Covid treatments if they test positive for the virus (people with kidney transplants, people on dialysis or with CKD stage 4 or 5)
People living or working in institutions/care homes where it is important to minimise outbreaks
People being discharged from hospitals to care homes or hospices

During April, while cases are high, patient facing NHS and social care staff will continue to test whether they have symptoms or not.

Kidney Care UK is extremely disappointed that free testing will not be available to friends and family of people at higher risk, despite 1,700 emails being sent to MPs by our supporters and those of MS Society and Blood Cancer UK.

Free testing in Wales is also coming to a gradual end for the general public, although some infrastructure will be maintained for vulnerable groups.

In Northern Ireland, from 22 April, routine asymptomatic (people with no symptoms) testing for the general public will be phased out, although testing for people at higher risk will continue. Full details are in this government announcement

In Scotland, free Covid tests will remain available until the end of April when they will be available to people at higher risk. We will publish further details when they are available.

Self isolation

If you develop symptoms of Covid, or test positive on a PCR or an LFT, you must start to follow government guidance on self-isolation, which vary between each country and are currently going through a period of change. Even where the law does not require people to self isolate, guidance advises people to self-isolate to reduce the risk of passing on the virus.

Support is available for people who are self-isolating, either because they have Covid or because they have been asked to self-isolate by the NHS, including financial support. The self-isolation support payment for workers who cannot work from home and must self-isolate, received by those on low incomes who test positive, will end in England on 24 February and in Wales at the end of June.

Keep your kidney unit informed

If you are at higher risk of severe illness with Covid (e.g. had been identified as Clinically Extremely Vulnerable) and have symptoms of the virus or have tested positive on a PCR or LFT, you should contact your kidney doctor to let them know, or your GP if you are not under hospital care currently.

Please do not go to your renal unit or to 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.

Looking after yourself

You should follow NHS advice and the advice of your GP or kidney doctor to help manage your symptoms. Keep your doctors informed and if you start to feel worse or more breathless you should seek help. In an emergency, call 999 if you are seriously ill.

Do not change your medications unless advised to do so by your kidney unit.

The NHS advises that you may be asked by your clinician to monitor your oxygen levels using a pulse oximeter device if you are at home with Covid and you are at high risk of becoming seriously ill. Read NHS advice on this and speak to your GP or doctor if you have tested positive for Covid and have any questions about pulse oximeters.

Someone in my household has tested positive for Covid, what should I do?

If someone in your household has symptoms of Covid or tests positive you should try to avoid being in close contact with them and maintain strict hygiene measures on how to limit contact with others in their house, in order to reduce the risk of spreading the virus. See here for advice for people who test positive.

How does kidney disease affect my risk if I catch Covid?

In general, people with moderate to advanced chronic kidney disease (CKD) are at increased risk from severe illness with Covid, although the level of risk is now lower than earlier in the pandemic. The level of risk increases somewhat as kidney function worsens (see table below for more detail on the different stages of CKD). However, whilst it remains important to protect yourself from catching Covid, the vast majority of people with kidney disease who contract Covid will feel poorly but be able to recover at home without going into hospital.

Stages of Chronic Kidney Disease

Kidney disease is just one of many factors that can increase a person’s risk from Covid, with the strongest being increasing age. People from Black and Ethnic Minority communities are also at slightly increased risk, which is the equivalent of being about six years older. Having kidney disease is similar, so the risk from Covid for a person with kidney disease is increased to that of a person slightly older than them. This could be in the region of five years for people with stage three CKD and 10 to 15 years for people with stage 5 CKD. Other health conditions alongside kidney disease may also increase risk.

This infographic from the UK Kidney Association illustrates which people with kidney disease are at higher risk:

Which kidney patients are at greater risk from Covid-19

The greater risk faced by some kidney patients placed them within the Clinically Extremely Vulnerable Group (CEV). This included those on dialysis, people with CKD stage 5 and people with a kidney transplant. Earlier in the pandemic this group were advised to shield. Shielding advice is no longer in place and the term Clinically Extremely Vulnerable is no longer widely used. Our clinical colleagues advise that people with kidney disease are encouraged to return to some form of normality while continuing with good practices such as frequent, handwashing, not touching the face too much and adopting the space rule when it is in your interests. Please see the section on Managing your risk for more information.

The UK Kidney Association have published guidance for the care of people with kidney disease during the next phase of Covid. It recommends wider access to antibody testing to identify who would most benefit from preventative treatments once they are available.

Government have published advice for people previously considered clinically extremely vulnerable and also people who are immunosuppressed.

Adults who were included in the Clinically Extremely Vulnerable category include the following (See 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 six 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

*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).

What does the data show about how many people with kidney disease are getting Covid and going into hospital or dying?

Hospitalisations and deaths are now much lower than earlier in the pandemic and the outcomes are better for people who do go into hospital with Covid. Data from the UK Kidney Association shows that just over 3 in 100 people with CKD stage 4 or 5, on dialysis or with a transplant who catch Covid, went on to sadly die. However, we do not know whether Covid contributed to their death. Those figures include both those who are vaccinated and unvaccinated. It is also important to note people’s individual risk from Covid varies considerably (see below).

The improvement in outcomes for people with CKD is partly because of vaccination and treatments but also because hospitals have learnt so much about how to look after people with Covid, including those with kidney disease. However, because of evidence which shows that many people with kidney disease are at substantially increased risk compared to the general population it is strongly recommended that people with kidney disease get fully vaccinated and follow additional precautions.

What is my risk from the Omicron variant?

The omicron variant appears to spread more easily but leads to less severe illness than previous Covid variants. Although many people with kidney disease have tested positive for Covid recently, a very small number of fully vaccinated patients were unwell enough to require hospital admission.

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

It is really difficult to measure exactly a person's individual risk, because it is determined by a wide range of factors, including rates of infection in your area. 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 depends to a great extent on how much the virus is passing from person to person in your local community which changes over time. Postcode search tools from the BBC and the Government show how many cases of Covid there have been in your local area in the past week. You can further reduce your risk of catching Covid 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 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 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 ALAMA Covid-age tool enables a more detailed assessment of risk. It 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. Taking into account age alone, a 25-year-old is at lower risk from Covid 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. The tool also shows how risk changes according to local Covid infection rates.

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.

Do treatments I receive for my kidney disease affect my risk from Covid?

Regardless of the Covid 19 vaccine, a patient on immunosuppression treatments may have a worse illness with Covid because their immune system is less able to fight off the disease. The risk of more severe Covid increases alongside the strength of immunosuppression treatment, although this varies by individual and many people who are immunosuppressed are able to recover at home. New treatments are targeted at people who have weaker immune systems to help them fight the virus. However, kidney doctors very much recommend that you do get vaccinated as this gives the opportunity for some protection.

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 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 than the general population. 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. 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 higher risk. If this is the case you should be careful to follow precautions to reduce your risk.

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.

The NHS Your Covid Recovery is an online service for those who have had Covid but have persistent concerns related to areas such as breathing or mental health (including 'Long Covid'). The service hosts information about how to manage ongoing symptoms and health needs at home, and on returning to work.

Cardiff and Vale University Health Board has launched the Keeping Me Well website (in Welsh or English) for those who are recovering from Covid along with advice for those whose treatment may have been delayed as a result of the pandemic.

Does having Covid worsen kidney function?

There is no data suggesting that the kidney function of people who recover from Covid at home will worsen. The kidneys of people with kidney disease who are admitted to hospital with Covid are a bit more vulnerable and function may worsen, as often happens if in hospital with other illnesses. This might mean a temporary spell on dialysis, where it was not previously needed. However, kidneys will recover in most cases. If you were already close to needing dialysis, then it might be that being sufficiently poorly with Covid to need a hospital admission means you have to start dialysis sooner than you would have otherwise.

Managing your risk from Covid

Those at higher risk might like to consider adopting the following precautions, which can reduce your risk of contracting Covid (as well as any guidance in place for the wider population in your area). You may also want to read our guidance on safer working:

Get vaccinated and we also recommend eligible household members take up the offer of vaccination. This is the best way to protect yourself and if you do get infected, you are much less likely to develop serious disease, be admitted to hospital or die than if you are unvaccinated.
Strictly avoid contact with someone who has tested positive for Covid until 10 days after they receive a positive result. Avoid people who have symptoms of Covid or other respiratory infections and have a temperature or feel unwell.
Asking friends and family to take a rapid lateral flow test before visiting you.
Meet people outside if possible. Open doors and windows to let in fresh air if meeting people inside.
Try to reduce the time spent in crowded enclosed spaces.
Wear a face covering when it is hard to stay away from other people – particularly crowded public places. Consider asking home visitors to wear face coverings.
Consider continuing to practice social distancing if that feels right for you and your friends

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).

Please see this summary from Kidney Charities Together of the current advice to kidney patients to help reduce their risk of contracting Covid.

Government guidance and information for people at highest risk from Covid:

How do I make decisions about 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, what activities are most important to them or whether they need to work outside the home.

We heard from Professor Richard Haynes at a Kidney Care UK webinar of the spectrum that exists between completely safe and extremely dangerous and how we all have a different level of risk along that spectrum that we find acceptable. Although the risk of catching Covid does exist, there are other things to consider when coming to a decision about what precautions you take, and it is not an absolute that you will catch Covid or become very ill. The impact on mental health and potentially physical health of not leaving your house must be considered. When thinking about whether you feel comfortable doing an activity, you should weigh up how important it is to do the thing in question and balance this with any potential risk.

The risk you are happy to take is likely to vary depending on the importance of the activity, for example you might feel prepared to go to your daughter’s wedding but not something less important to you. You should think through everything that you can do to minimise risk – this includes maintain social distancing where possible, meeting outside or in well ventilated places, asking if people could do lateral flow tests before meeting, wearing masks, washing hands, and travelling off peak. It is advisable to keep being cautious but don’t lock yourself away and balance the risk with potential benefits as you do with other activities.

Do I still need to shield?

How much you go out and about and meet up with people is an individual decision and also determined by factors such as whether you go out to work. If you are unsure about what you should be doing to protect yourself, we advise seeking individual advice from your clinician.

Advice that people are highest risk from Covid should shield is no longer in place. Kidney doctors have advised that, in general, if you are carefully following the precautions described above you do not need to lock yourself away because this can potentially harm your mental health and also your physical health.

If your clinician advises that you need to shield because of your individual circumstances, such as the treatment you are receiving, it is very important that you follow this advice.

What else can I do to reduce my risk?

Should I wear a face covering?

UK nation face mask guidance is here:

People with CKD should follow the same rules as the general population with regards to wearing a face covering and are also advised to wear them in indoor public areas.

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.

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.

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. In theory, wearing gloves might actually increase the risk of catching or spreading Covid 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 safety during dialysis sessions and other hospital visits?

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 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 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 in a hospital waiting or clinic room.

This poster from the UK Kidney Association illustrates what kidney units are doing to keep people safe.

Can I go to the shops?

If you have been told to self-isolate or advised to shield (e.g. before a hospital admission) 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 Mutual Aid group, local community groups, or Community NI in Northern Ireland.

If you have not been advised to self-isolate or shield, you can choose to go to the shops although you may prefer to try to choose a quiet time to shop.

Are people at highest risk advised they may go into restaurants/ pubs etc?

You may go to pubs and restaurants. You may choose or be required to wear a mask, maintain social distancing and should practise good, frequent hand washing and you may also choose to sit in an outside area, if possible.

Is it safe to travel on public transport?

At present, our UK Kidney Association colleagues advise that if you are at high risk from Covid and 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 wear a facemask, try not to touch anything if possible and sanitise your hands before and after travelling.

Should I let people in the house for emergency maintenance?

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. It would also be sensible to keep windows open if possible, to improve ventilation.

Can I go to the hairdresser/barber?

You are able to visit your hairdresser/barber. If your hairdresser/barber is able to offer you a seat in a quieter area, this is advisable. You may also be required to wear a mask, depending on rules in your area and the request of your hairdresser/barber.

Can I go to the gym/play sports if I am in the highest risk group?

You may visit the gym or play sports, although people at highest risk may choose to keep socially distanced from other gym users or participants. Please take care to sanitise any gym equipment before you use it and 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.

Should I be wiping down my internet shopping deliveries?

Early on it was thought that the virus could survive on surfaces, but now we know the virus is spread mainly via airborne transmission. This means it is less important to do things like wipe down an internet shopping delivery although it is of course important to keep your food surfaces clean anyway.

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

It is difficult to establish whether children play a large role in transmitting the Covid virus, particularly because children who catch the virus are less likely to have symptoms. It is thought younger children are less likely to transmit the virus than children of secondary school age. 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. Measures that schools may put in place include ensuring good ventilation, making sure children are washing their hands regularly, and increased cleaning in the school. 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. When children return from school they should shower and wash their clothes. When you are travelling to and from school you should consider taking measures such as wearing a face mask and keeping 2m away from others.

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

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.

Support for kidney patients during the pandemic

Although some of the support that was available earlier in the pandemic has ended, sources of support remain and you can always contact Kidney Care UK for advice.

England

The NHS Volunteer Responders programme is still available in England 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.

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 has published a contact list for support in each local authority and a list of sources of help with essential shopping. You should speak to your pharmacy if you need help with picking up medicines

There is also a Government service available if you, or someone you know, is affected by Covid 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

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

You should visit the Scottish Government Covid 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. It is available 9.00am to 5.00pm, Monday to Friday.

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, and contact with local volunteer groups

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

Support with finances

The Covid-19 outbreak will have financial implications for many people. There is advice about managing your money in uncertain times on the Government backed Money Helper Service.

Statutory Sick Pay (SSP) is no longer available from the first day of absence due to Covid, following the removal of the legal requirement to self isolate.

These provisions will be ending in England on Thursday 24 February, following the removal of the legal requirement to self isolate.

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. Ofgem (the energy regulator) has more information on this. Many energy companies have also made commitments to help people who are struggling to pay energy bills this winter. Contact your energy company for more information.

You can also ask to be referred to a Renal Social Worker if you have questions about income support and benefits.

Working safely during the pandemic

Is it safe for me to go into to work?

If you cannot work from home, whether it is safe for you to go in to work depends on your individual risk from Covid, how your workplace is set up and how you travel to get there. 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 share the results of the risk assessment all workplaces with five or more employees are obliged to carry out and discuss steps what can be done to make the workplace safer, taking into account your higher risk from respiratory infections, including Covid.
Speak to your kidney doctor, they will be able to advise on additional precautions.
Consider whether there are any alternatives to public transport (e.g. car share with one other person) or whether you can travel at quieter times
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.

Kidney Care UK is leading a coalition of over 20 healthcare charities to ask employers to keep their immunocompromised staff safe at work, as there is evidence that the Covid vaccines may not work as well for these individuals. We have published an updated Safe at work letter, which you can share with your employer to help you discuss your safety at work.

Current government guidance

Work from home guidance has now come to an end in England (although people who are immunosuppressed are still advised to work from home if they feel this is right for them). In Northern Ireland and Wales, people are advised to work from home where they can and extra consideration is encouraged for people at higher risk. In Scotland a gradual return to the workplace is encouraged and in Wales working from home is now guidance rather than a legal requirement.

If people at higher risk from Covid cannot work from home, employers should do all they can to reduce their risk of Covid within the workplace setting. Government guidance highlights that people at highest risk may be entitled to a Reasonable Adjustment under the Equality Act

Guidance for each UK nation explains what employers should do to reduce the spread of respiratory infections, including Covid:

The Health and Safety Executive (HSE) has information on working safely during the pandemic. Although the requirement to carry out a specific Covid risk assessment has ended, HSE remind employers that they must, as always, comply with the Workplace (Health, Safety and Welfare) Regulations 1992 for welfare facilities. There is specific guidance on providing sufficient general ventilation in workplaces.

The UK Kidney Association recommend that all Clinically Extremely Vulnerable kidney patients should continue to be given the opportunity to work from home where possible and where returning to onsite working they should be offered a work based assessment to ensure their risk of Covid is minimised.

We recommend that you:

ask to discuss workplace risk management with your employer

Your employer must carry out a risk assessment to identify the steps they need to take to protect their workers from harm and record the findings if they have five or more employees . You could ask to see this and also if they would consider doing an individual risk assessment if this has not already been done.

help your employer understand your risk and seek advice from your clinician

Your employer may not be aware of how your condition affects your workplace risk from Covid, so information you choose to share could help. You may like to show them information from the Kidney Care UK website, for example our Covid information. You might discuss how to manage your risk at work with your doctor (getting it in writing if possible) and share this with your employer.

think about what reasonable adjustments might reduce your risk of Covid

The risk assessment process helps your employer consider reasonable adjustments to enable higher risk employees work safely. Think about what adjustments might reduce your risk of Covid. Discuss potential changes with your employer and make a request for adjustments in writing (including any advice you have received from your doctor), asking for a written response in a reasonable timeframe, such as 7-14 days.

The Equality Act 2010 requires an employer to make reasonable adjustments so that an employee with a disability has no obstacles to remain in work, for example risk from Covid. The specific changes will depend on your workplace and the type of work you do. Reasonable adjustments may include:

Continuing to work from home or work from home for part of the week
Changing hours to work avoid peak times on public transport
Relocation to a less crowded area of the workplace
Reducing the number of people you work with, for example using fixed teams or partnering.

Support for additional costs to enable safer working

The Access to Work scheme can give practical advice and guidance to employers, to help them understand physical and mental ill health and how they can support employees and may help with funding.[Dentons1]

Where can I go if I am concerned about my health and safety at work?

Where employers are not managing the risk of Covid, the HSE and local authorities (depending on the body responsible for health and safety for your employer) will take action.

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 for residents in England, Scotland and Wales and also have a telephone helpline: 0300 790 6787 (Monday to Friday 8.30am to 5pm).

The Health and Safety Executive Northern Ireland have information available online and can be contacted by email via [email protected] and by phone on 0800 0320 121.

ACAS (The Advisory, Conciliation and Arbitration Service) has advice for employees and employers about working safely during the Covid 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)

Citizens Advice also has information about your rights at work and how to solve problems in the workplace.

Kidney Care UK have this general guidance on employment rights and this letter which you can download to discuss with your employer.

Further information about risk assessments

The Welsh Government have produced a workforce risk assessment tool. The Northern Ireland Health and Safety Executive has produced a workplace risk assessment template.

The University of Glasgow and Society of Occupational Medicine published Covid return to work guidelines, which are intended to support risk assessment decisions. The guide describes the multiple factors to consider including community infection levels, individual vulnerability (Covid-age), workplace / commute transmission risk, vaccination status and previous Covid infection. It has a matrix which helps estimate workplace risk and a flowchart summarising the risk assessment steps.

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, this reduces your risk.

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, and then follow these steps:

Look at the current level of Covid in your area
Use the ALAMA tool to calculate your ‘Covid age’
Look at the above mentioned Return to Work guideline, which can be downloaded from this website, and use its matrix to help estimate your risk and the flowchart to help guide discussions.

Looking after your emotional wellbeing and coping with anxiety

Sarah, a counsellor at Kidney Care UK, spoke at our webinar in November about how people can cope with the anxiety created by the Covid pandemic. She also spoke about how to cope with situations you may find particularly stressful.

At the end of this guidance we have provided links to sources of further help and information.

How can I cope with the anxiety brought on by the pandemic?

Sarah explained that we deal with anxiety all the time and it is very normal to feel anxious at times. But since the pandemic has started most people’s baseline anxiety has gone up because we feel like so much is out of our control. There are constant news broadcasts and lockdowns gave us time for us to focus on anxiety. So we need to think how we can reduce our base rate anxiety to help us cope better day to day.

How we reduce our level of anxiety is different for everyone, but can include exercise, breathing techniques, and spending time with friends and family. Running helps Sarah dissipate tight pent-up feelings and there are many things that work in the same way that do not require the same level of fitness, for example going for a walk or doing a muscle relaxation exercise. Talking books (audiobooks) take Sarah out of her own head and into someone else’s world so it stops her from going over and over worry and ruminating. It provides a distraction. Again, there lots of ways of distracting and calming yourself, such as watching a film, building a model aircraft, or playing a computer game. It is important to think about what works for you. If you feel yourself becoming anxious or that you mind is beginning to dwell on things then do whatever works for you to refocus. Other things include knitting a Christmas jumper, organizing the family holiday photographs into an album, or planting up some bulbs for next spring. Understanding which activities to do to distract and calm yourself gives you back control by learning to recognise when anxiety is rising and doing something about it.

It is also really important to recognise what you have already achieved. We are coming into our second full year of this pandemic and you are still here. You have coped with kidney disease as well as the pandemic. You are managing and you can do this.

I’m still shielding and planning to do so over winter. This is making me feel pretty low and hopeless, what can I do to help myself cope emotionally with this?

It would be foolish to deny that another winter shielding is a very depressing prospect and Sarah suggested any kidney patients considering this need to think about looking after their mental health as well as their physical health. People need to do what feels comfortable for them but if the prospect of continued shielding makes them feel low and hopeless it suggests that doing so is not working for their mental health. What they might like to do is consider what can they do differently and still feel safe.

It is important to remember that we are in a different place now than we were last year. Last November there were local lockdowns and some of us weren’t able to see friends and family. That is not the case this year. This year we have vaccines, new treatments and lateral flow tests available. So we are a bit better armed. With this in mind Sarah suggested that if seeing your grandchildren, girlfriend or best friend is going to give you a boost but also concerns you, you can use tools like lateral flow tests and keeping the area well ventilated to help reassure you.

Routines and planning activities to keep your spirits up

Sarah reflected that sometimes when we are feeling low our motivation to do things is lower and we can see all the barriers to doing things and it becomes easier not to do them and the less we do the less we feel like doing. Very often counselling clients who are feeling low tell her they have nothing to look forward to. It is really important to have something to look forward to and getting a routine in place, peppered with things to look forward to, can elevate our mood. It does not have to be anything grand like going on holiday, and could be having your friend around to watch the football or meeting someone for a walk and a coffee. Going to bed and rising at similar times and keeping a daily routine is also important. This sort of structure helps us avoid the cycle of doing less and then feeling like doing less.

Is it normal to feel anxious in crowded situations like public transport? What can I do to calm myself?

Sarah reminded us that anxiety is a normal part of life and it is normal to be anxious during a pandemic in a crowded place, especially with an underlying health condition. As discussed by the panel of doctors, if you can avoid rush hours then it is wise to do so, but if you have to travel on a busy train or bus you can manage your anxiety by thinking about what you can control. You can wear a mask and wash your hands. You can distract yourself by listening to music or reading a paper. You can do a breathing exercise. And it is important to try to avoid black and white thinking. It is not a foregone conclusion that by travelling on a public transport you will get Covid. When we are anxious we often focus on the worst, so try not to give yourself negative messages. Instead, remind yourself that you are wearing a mask and keeping yourself safe and you are still here after nearly two years of Covid. In response to a comment by an audience member Sarah also commended practising mindfulness techniques so that we can employ them at any time. We have information on the Kidney Care UK website on this way of focusing on the present, in the ‘Living with Kidney Disease’ section.

Sources of further information

Kidney Care UK has a page with tips on managing your anxiety and a page on mindfulness colouring
Every Mind Matters website 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

Children with kidney disease and Covid

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.

On August 25 2021, the UK Chief Medical Officers indicated children (aged under 18 years) are no longer classed as Clinically Extremely Vulnerable and will be taken off the shielding patient list because almost all children, including those with kidney disease, are at very low risk from severe illness or death from Covid. Specialists will advise if individual children should follow enhanced protective measures. An FAQ is available in the resource list on this Royal College of GP webpage about the shielding list and here is the latest information from the British Association of Paediatric Nephrology. If you have any questions you should contact your hospital kidney team.

Kidney doctors looking after children now tend to consider only a very small group of children with kidney disease to be at high risk. This would generally be children in the first three months post-transplant or those on high-dose steroid therapy (daily) together with another potent immunosuppressive agent such as MMF, for example. Anyone with questions about their child’s care should speak to their 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.

Children with kidney disease and school

Most children who were previously 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. Please see the guidance from the British Association for Paediatric Nephrology 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.

Additional guidance

The Royal College for Paediatric and Child Health has produced lots of useful advice for families in all four 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.

Covid-19 Vaccines

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 all your vaccinations. Some protection is better than none.
Even after you have had your vaccine, people at highest risk should continue to carefully follow precautionary measures.
This document explains which vaccine doses different groups are currently offered.

Spring booster campaign

The Government has published details of the Spring vaccine booster for those over 75, those living in care homes and those aged over 12 who are immunosuppressed. This will be a fifth dose for people who are immunosuppressed and is intended to boost protection, which may wane over time.

The Spring booster is recommended to be 6 months after the previous dose for many older people who had their last booster in Autumn 2021. However, eligible people who have had a vaccine dose more recently will be able to book a Spring booster as long as it is 3 months since the previous dose. This is to provide protection against a potential summer wave and to bring everyone into a similar schedule in time for future booster campaigns.

People in England can book Spring booster appointments online. You can also call 119 to book a vaccination or attend a walk-in centre (check which walk-in centres offer Spring boosters). You should take evidence that you were immunosuppressed when you received your last vaccine does (e.g. a letter from your doctor which mentions your condition, or a prescription of your immunosuppressant medicines). In Scotland and Wales, invitations for the booster will be sent out soon. Northern Ireland will announce its rollout plans soon.

Spring booster campaign FAQs

Why are some people being invited for a Spring booster?

Covid-19 is more serious in older people and those with a weakened immune system. Protection from the vaccine for these groups may be lower and may decline more quickly. For this reason, people aged 75 and over, those in care homes for older adults and those aged 12 and over with a weakened immune system are being offered the Spring booster.

Why is the interval for Spring boosters three to six months?

The NHS is working to get everyone who needs a Spring booster vaccinated by the end of June. There is flexibility to ensure that no matter when someone is due their vaccination, they can access it within this window.

What adjustments are being made to support people who are severely immunosuppressed attending walk-in vaccination appointments?

Vaccination sites have been asked to ensure that appropriate arrangements and reasonable adjustments are in place, such as priority lanes, to support people who are less able to queue, including those in higher-risk groups.

We have produced a poster highlighting that staff should ensure people who are at risk, alongside other priority groups, have their wait time reduced.

Will individuals be expected to get more doses of the COVID-19 vaccine in the future?

The NHS will be delivering a Spring booster to those who are most vulnerable. The NHS is also preparing to deliver an Autumn dose of the vaccine, but whether this happens will depend on future recommendations from the JCVI.

I have recently recovered from COVID-19, do I still need to get vaccinated?

Yes. You still need to get a booster dose of the vaccine for extra protection, even if you have had COVID-19.

If you recently recovered from the virus, you will need to wait before getting any dose of the vaccine. People will need to wait:

4 weeks (28 days) for those aged 18 or over, or under 18 and considered to be in a high-risk group
12 weeks (84 days) for those aged under 18 and not considered to be in a high-risk group

How can someone report an issue if they are struggling to access the vaccinations they need?

If an individual encounters a problem when trying to get a COVID-19 vaccine, it is important they report it so that the NHS can resolve the issue and improve services to prevent it happening again. There are a number of ways you can provide feedback or make a complaint. Information about how to contact NHS England is available here on their website.

Vaccine rollout for people who are immunosuppressed

Severely immunocompromised adults and children aged over 12 are offered three primary doses of the vaccine. This includes those who have kidney transplants or are immunosuppressed because they have certain kidney diseases The third dose is offered because you may not have as much protection from the first two doses as people without a weakened immune system. The third dose may help give you better protection.

People aged 12 and over who are severely immunosuppressed were also offered a fourth booster dose, three months after their third dose. This helps improve the protection you have from your first three doses and helps give you longer term protection against becoming severely ill with Covid. This group is also now being offered a Spring booster dose, at least three months after their previous dose.

How can I access the booster dose?

See above for details of how to access the Spring booster. People who are severely immunosuppressed can follow this guidance to access a booster dose, whether it is your fourth or fifth dose.

The general population can book their booster dose online or attend a walk-in centre. Here is information from each UK country about their booster programme and how to book.

Which vaccine should I receive for my third and booster doses?

A third primary dose for people who are severely immunosuppressed will be a full dose of an mRNA vaccine, such as Pfizer or Moderna (regardless of which vaccine was given as 1st or 2nd) as there is evidence this results in a stronger immune response, but Astra Zeneca can be offered if either of the other 2 are not available or there are medical issues such as allergies. Children aged below 16 should be offered the Pfizer as Moderna is not licensed for use in this age group.

Pfizer or a half dose of Moderna is recommended for the booster dose, regardless of which vaccine was given as a 1st and 2nd (or subsequent doses). Where neither can be offered, for example for those who have an allergy to either vaccine, the Oxford/AstraZeneca vaccine can be used for those who received this vaccine for their first and second doses.

Side effects of third dose or booster

There is no information to say that reaction to a third vaccine dose will be worse than that to a previous dose.

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, evidence to date shows that far fewer fully vaccinated people with kidney disease become very ill and die should they contract Covid, than people who have not been fully vaccinated. While the vaccines may not always prevent infection it is more likely the illness will be at the mild end of the spectrum.

The latest research tells us that, for people with kidney disease who are not immunosuppressed, three doses are necessary for a good level of protection from Covid. Two doses are less likely to provide a good enough level of protection, so it is very important that people in this group have all three of their vaccine doses.

People who are immunosuppressed may respond less well, but research shows that for each additional dose there will be more people who respond. A proportion of the people who had no response to three doses will respond to the fourth dose. A small number of people will not respond to the fourth dose, but they will not be harmed by having repeated doses. Therefore, it is very important that people who are immunosuppressed have all four doses to secure their best chance of protection.

Please have a look at the recording and written summary of our latest Covid-19 Question Time Webinar on Monday 7 February, where a panel of kidney doctors and researchers answered your questions on Covid-19, including a discussion of what research is telling us about vaccines.

Can I get involved in studies of how effective the vaccines are for kidney patients?

A range of studies are looking at how people with kidney disease respond to the vaccines. Most involve testing participants’ blood samples for antibody tests and the results may be shared with you. Results from these studies will be fed back to the JCVI to help inform their decisions. Studies include:

Melody

There are other studies happening around the UK and we recommend you speak to your kidney doctor for more information.

What data is available on antibody response to the Covid vaccine?

The data that is available on antibody response to two vaccines doses shows huge variation between individuals. The Octave study has looked at vaccine response in a range of patients who are immunosuppressed conditions, including people with kidney disease. We still have to wait for research to answer questions about what level of antibodies is necessary for protection.

Data analysed so far indicates, people on dialysis and with CKD have responded well to the vaccine and better than people who take immunosuppressant treatments, including those with transplants. Just over half of transplant patients showed an antibody response after two doses. Around 12 in 20 (60%) of patients with an autoimmune disease had an antibody response to vaccine but this varied on a person’s treatment – about 5 in 20 (25%) of people taking an active treatment like rituximab had a response.

People who had had Covid were more likely to have an antibody response following vaccination.

The findings from early studies suggest people most likely to have a lower antibody response are 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.

Researchers have reminded us that a lack of antibody response does not mean a lack of protection from severe disease and death from Covid. Antibodies are just one part of the immune response. There are many different types of antibodies and we also have something called T-cells, which are also important in the body’s immune response. T-cells have a range of different functions within the immune system to help the body attack the virus in a number of different ways. It is not currently possibly to buy a test for T-cells. The immune system is like a jigsaw, with the different parts coming together to protect the body. Looking at just one part of the jigsaw, such as antibodies, does not give the whole picture.

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 severe disease with 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. The Melody study, which will assess the antibody response to the third Covid vaccine dose amongst people who are immunosuppressed, is now underway. Results will be shared with the JCVI and government to guide policy. If you would like to participate please go to the Melody Trial website.

The latest statement from the UK Kidney Association recommends that some people with kidney disease have free access to antibody testing so that people with low or no antibodies following vaccination can be prioritised for preventative treatments as they become available. The result can also guide decisions about managing risk from Covid, although the authors acknowledge that there is still uncertainty about how a person’s antibody level equates to protection from Covid. 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 if I have produced no antibodies after four or five doses?

If you have not produced any antibodies after four or five doses, it is sensible to be cautious when you go out and about, for example by wearing a mask and meeting people in the fresh air, but there is reason for optimism and many people who have no antibodies have caught Covid and recovered well.

Antibodies are only one part of the complex immune system and it is likely that although no antibodies are present, the body’s T cells and other immune responses are primed to fight the virus should a person become infected. New medicines are also available which are effective at treating immunosuppressed people with Covid

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 (children aged 16-17 years of age, with no underlying health conditions, should wait 12 weeks after infection). People who have previously contracted Covid infection may have some immune response from the infection for a period of time, but this will be strengthened by having both doses of the vaccine.

Children and vaccination

See here for information about the vaccine from the British Association for Paediatric Nephrology.

The following groups are offered two doses of the Pfizer vaccine:

Children aged 5 years and over at increased risk of serious Covid (doses will be 8 weeks apart)
5 to 15-year-olds who live with a severely immunosuppressed person (doses 8 weeks apart).
All other children who are aged 12 to 17 years (doses 12 weeks apart)

Children aged 12 and over who are severely immunosuppressed will also be offered a third primary dose (8 weeks after the second dose).

The JCVI has also now recommended that the offer of two age adjusted doses of the Pfizer Covid-19 vaccine is extended to all children aged 5-11. Extending vaccination to children aged 5 and above follows a safety and effectiveness review by the Medicines and Healthcare products Regulatory Agency (MHRA).

The following groups are offered a booster dose, three months after their primary course of 2 doses (or 3 doses for severely immunosuppressed children)

Children aged 12 and over who:
- live with someone who has a weakened immune system (such as someone with a transplant)
- have a condition that means they're at high risk of getting seriously ill from Covid-19

Arrangements for accessing the vaccine vary between UK nation. Please look at the vaccine information for where you live and contact your GP if you have any questions:

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 children and adults aged 5 and above 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. The clinical trials for Pfizer/BioNTech and the AstraZeneca trials took place in countries around the world, with the proportion of non-white participants ranging from 7.1% to 87% depending on the country. Because so few people in the vaccine trials caught Covid, there was insufficient data to do a subgroup analysis of effectiveness in different ethnic groups.

Are the vaccines effective against the new variants/mutations?

Studies are currently underway to understand how well the vaccines protect against the Omicron variant and the current view is that protection from two doses is weaker, but improves after a third dose.

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 together to avoid delays and funding was made available quickly. But before they can be used, the vaccines must pass all the same safety tests as for any other vaccine.

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. These can be treated with paracetamol. 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 or that the vaccines have an impact on kidney functioning.

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 reported after first exposure to the AZ vaccine, with a slightly higher incidence in younger age groups.

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 getting a vaccination as soon as possible, including, with the AZ vaccine, far outweigh the risk of adverse events.

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

a new onset of severe or persistent headache, blurred vision, confusion or seizures
develop shortness of breath, chest pain, leg swelling or persistent abdominal pain,
unusual skin bruising or pinpoint round spots beyond the injection site

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.

Many thousands of people with solid organ transplants, of which many are kidney transplants, have received the Covid-19 vaccine. This has not shown any adverse effect on kidney function or complications, for example rejection.

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 not been proven to happen with other vaccines or the Covid vaccines. The benefits of reducing the known risk of Covid-19 for kidney patients outweigh concerns and your kidney team recommends that you have the vaccination.

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

It is recommended to wait until your immunosuppressant is at maintenance level. 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 and you should not adjust your immunosuppressant medication before receiving the vaccine. This is extremely important for transplant recipients because reducing immunosuppressant medication puts your transplant at risk.

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.

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 2021 and advise that women who are pregnant should be offered vaccination at the same time as non-pregnant women.

It is safe to have the vaccine if you are trying to get pregnant or are breastfeeding. 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. 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.

On 30 July the Chief Midwifery Office for England urged pregnant women to take up the jab as it was reported that 99% of pregnant women admitted to hospital with Covid were unvaccinated.

Covid-19 treatments

A huge amount of work is going on to develop new and effective treatments for Covid-19. The success of this work has reduced the numbers of people becoming seriously ill and dying from Covid, but work is still ongoing. 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.

Monoclonal antibody treatments, which are already used for a range of other diseases, have been developed by looking at the many different types of antibodies produced by the human body following a Covid infection and selecting the ones best at killing the virus. Scientists then work out how to manufacture them in the laboratory. The Recovery trial has found that antibody treatments can reduce the risk of death among people in hospital with severe Covid who have not produced antibodies of their own.

Antiviral treatments are a second group of medicines to fight Covid. These can be tablets you can swallow rather than injections into the skin or infusions into the vein. Molnupiravir (also called Lagevrio) wasused in people with mild to moderate Covid until recently but is now being phased out Another antiviral called Paxlovid (PF-07321332+ritonavir) is also now being used, but it may not be suitable for everyone with kidney disease because it interacts with other medications, such as Tacrolimus (an immunosuppressant). Specialists will review and advise on individual cases.

Treatment options available for kidney patients who test positive for Covid-19

A scheme to speed up access to effective treatments for people at the highest risk from Covid has been rolled out across the UK. Please see our section on What should I do if I have Covid-19 symptoms or test positive for the virus? for information on how to access the treatments.

The is the list of those with kidney disease considered to be at highest risk and eligible for this access scheme includes:

Renal transplant recipients (including those with failed transplants within the past 12 months,) particularly those who:
- Received B cell depleting therapy within the past 12 months (including alemtuzumab, rituximab [anti-CD20], anti-thymocyte globulin)
- Have an additional substantial risk factor which would in isolation make them eligible for nMABs or oral antivirals
- Have not been vaccinated prior to transplantation
Non-transplant patients who have received a comparable level of immunosuppression
Patients with chronic kidney stage 4 or 5 (an eGFR less than 30 ml/min/1.73m2) (without immunosuppression), including dialysis patients.

Each country has a web page about the new treatments:

People with kidney disease who test positive for Covid but do not fall into this very high-risk group may be able join a national study of new treatments called PANORAMIC, run by the University of Oxford. People aged over 50 and those with underlying health conditions, including people with chronic kidney disease who do not fall into the highest risk group, who have tested positive for Covid-19 can sign up on the study website. People taking part in the study will either be given standard treatments for Covid-19 or the same standard treatments plus one of the new drug treatments under investigation . The selection will be random and means you may not be given the treatment.

It is important that this treatment begins as soon as possible after the onset of Covid symptoms, so we recommend taking a test as soon as you develop symptoms.

Preventative treatments

There is lots of interest and work going on to develop and test treatments that can prevent people from becoming ill with Covid. These will be particularly important for people who are immunosuppressed who may not have responded as well to the Covid vaccines. Many of the drugs in development may offer long-acting protection, which will be very helpful in enabling immunosuppressed people to get back to normal life.

Evusheld is an antibody therapy developed for the pre-exposure prophylaxis (prevention) of Covid. The MHRA have approved the use of Evusheld to prevent Covid in people whose immune response is poor. The Antivirals and Therapeutics Taskforce, set up to ensure patients in the UK can access safe and effective Covid treatments as soon as possible, are currently reviewing whether Evusheld protects against current variants, as the original clinical trials were done when Delta was the circulating variant; what the correct dosage would be; that it does not contribute to the generation of new variants of Covid. They are also looking at how they may distribute the drug if it is effective. We know how important and frustrating this is for kidney patients, particularly those who may be less well protected. We are highlighting this to policy makers in all our conversations and asking them when we will know more about the availability of the drug to patients. We will update as soon as we know more.

A trial called PROTECT-V is evaluating the benefits of treatments that may prevent Covid, including a nasal spray called Niclosamide. They will also be adding the monoclonal antibody sotrivomab and another drug, ciclesonide, to the clinical trial.

The Panoramic PEP substudy will test whether antivirals prevent transmission of Covid to people living with someone who has the virus (post exposure protection).

Although lots of work is going on, preventative treatments are not currently in routine use in the UK. It may be that widespread use of these treatments becomes unnecessary, because of omicron and potentially future variants causing less severe illness which people can recover from on their own. No treatment is without risk, so there would need to be a careful consideration of the benefits of reducing an already low risk from Covid against the potential harm of giving an additional medication to a person with kidney disease. This is a different risk benefit calculation to giving the medication to someone who already has Covid or giving preventative treatment when the risk of severe illness with Covid is very high.

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 services through the Covid pandemic

A huge amount of work has gone on during the pandemic to make sure people with kidney disease can access the care and treatment they need and to make sure people are kept safe from Covid while they are receiving that treatment. However, because of the pressure on health services, we know that people have often found it difficult to access support and Kidney Care UK will continue to campaign for people with kidney disease to get the care that they need, at the time they need it.

NHS Health at Home has information about looking after your health during the pandemic, including advice on accessing health services from home or ordering medicines. It also has advice on maintaining physical and mental health while at home.

Remote appointments

You may be offered an appointment by phone or video call with a GP, nurse, hospital specialist or other healthcare professional. For video appointments you will need a smartphone, tablet or computer with an internet connection. The decision to offer you a phone or video appointment will be made by the healthcare professional based on your needs and preferences.

If you have not had a video call before or are unsure how it works, this guide has advice and information to help you feel confident about having a video consultation.

Dialysis

This infographic from the UK Kidney Association illustrates what has been done to reduce the risk of Covid in dialysis units.

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.

People on dialysis should 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. Government guidance states face coverings are mandatory for everyone attending a hospital as an outpatient or visitor.

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

The UK Kidney Association, with the Renal Nutrition Group guidance on eating and drinking during hospital or satellite unit based dialysis 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 take off your mask to eat or drink you must put it back on once finished. You should use hand sanitizer before you take your mask off and before putting it back on. This also applies in units run by Fresenius.

Home dialysis supplies

Guidance for drivers states patients will be contacted and asked about how they would like their delivery to be made. Drivers will receive training in 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. Baxter Healthcare have provided Covid-19 patient information for those receiving home dialysis supplies from them.

Dialysis away from base

Guidance on dialysis away from base (DAFB) in the UK has been published to support kidney units to safely admit visiting dialysis patients. Kidney Care UK has contributed to this work, which is led by the UK Kidney 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.

If you are thinking of travelling abroad, it may be helpful to speak to your doctor about the risk from Covid in the country you are thinking of travelling to. Rules regarding testing and quarantine may be place either in the UK or the country you are visiting. If you receive dialysis in hospital or a satellite unit, there may also be additional safety precautions in place for when you return.

See each UK nation government website for more information on travelling abroad:

Government help may be available for the cost of managed quarantine and testing, associated with travel. This is restricted to essential travel only.

Transplantation services

The transplant programme in the UK was badly affected during the pandemic, but all centres are now open, although restrictions may be in place in Belfast. The current list of centres and restrictions is here. Kidney Care UK is working with the NHS on a programme of work to improve the transplantation system and remove barriers to organ donation. Read more here.

Will I be taken off of the transplant waiting list if I have not had the Covid vaccination?

False reports were circulating that individuals would be taken off of the transplant waiting list if they chose not to have the Covid vaccine. This is not the case. NHS Blood and Transplant have said: “When it comes to donation, you can also be an organ donor regardless of whether you have received the vaccine. We would always advise people to have the vaccination if possible, as it gives people the best chance of protection against the most severe consequences of Covid. As transplantation requires a patient to be immunosuppressed, in some cases it may be safer for some patients to hold off or wait for a transplant, rather than undergo the transplant if it will increase their risk of contracting or dying from Covid. The risks versus benefits of transplantation are always discussed in detail with the patient and kept under regular review."

There is more information from NHS Blood and Transplant here.

Safe transplantation during the Covid pandemic

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.

People going into hospital for planned surgery, including living donation, may need to self-isolate for a period before admission. Your hospital will provide further details.

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

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

Recent updates

Contents of this page

What should I do if I have Covid-19 symptoms or have tested positive for the virus?

Access to Covid treatments for CKD patients

Covid symptoms action plan for England and Wales

Covid symptoms action plan for Scotland

Covid symptoms action plan for Northern Ireland

Research into Covid treatments for other groups:

What are the symptoms of Covid?

PCR tests and LFT tests

Self isolation

Keep your kidney unit informed

Looking after yourself

Someone in my household has tested positive for Covid, what should I do?

How does kidney disease affect my risk if I catch Covid?

Stages of Chronic Kidney Disease

What does the data show about how many people with kidney disease are getting Covid and going into hospital or dying?

What is my risk from the Omicron variant?

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

Do treatments I receive for my kidney disease affect my risk from Covid?

I only have one kidney – am I at risk?

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

I have high blood pressure, am I at risk?

Are kidney patients affected by Long Covid?

Does having Covid worsen kidney function?

Managing your risk from Covid

Government guidance and information for people at highest risk from Covid:

How do I make decisions about risk?

Do I still need to shield?

What else can I do to reduce my risk?

Should I wear a face covering?

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

What about my safety during dialysis sessions and other hospital visits?

Can I go to the shops?

Are people at highest risk advised they may go into restaurants/ pubs etc?

Is it safe to travel on public transport?

Should I let people in the house for emergency maintenance?

Can I go to the hairdresser/barber?

Can I go to the gym/play sports if I am in the highest risk group?

Should I be wiping down my internet shopping deliveries?

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

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

Support for kidney patients during the pandemic

England

Wales

Northern Ireland

Scotland

Support with finances

Working safely during the pandemic

Is it safe for me to go into to work?

Current government guidance

Where can I go if I am concerned about my health and safety at work?

Further information about risk assessments

Looking after your emotional wellbeing and coping with anxiety

How can I cope with the anxiety brought on by the pandemic?

I’m still shielding and planning to do so over winter. This is making me feel pretty low and hopeless, what can I do to help myself cope emotionally with this?

Routines and planning activities to keep your spirits up

Is it normal to feel anxious in crowded situations like public transport? What can I do to calm myself?

Sources of further information

Children with kidney disease and Covid

Children with kidney disease and school

Additional guidance

Covid-19 Vaccines

Spring booster campaign

Spring booster campaign FAQs

Why are some people being invited for a Spring booster?

Why is the interval for Spring boosters three to six months?

What adjustments are being made to support people who are severely immunosuppressed attending walk-in vaccination appointments?

Will individuals be expected to get more doses of the COVID-19 vaccine in the future?

I have recently recovered from COVID-19, do I still need to get vaccinated?

How can someone report an issue if they are struggling to access the vaccinations they need?

Vaccine rollout for people who are immunosuppressed

How can I access the booster dose?

Which vaccine should I receive for my third and booster doses?

Side effects of third dose or booster

How well do the vaccines work for kidney patients?

Can I get involved in studies of how effective the vaccines are for kidney patients?