Updated 21 October
Do keep looking at this website daily 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.
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- The Government has reached a deal for the supply of two new antiviral treatments for Covid-19, should those treatments be approved by the Medicines and Health Regulatory Authority (MHRA). Antiviral medicines can treat people who are either infected by or exposed to a virus and may be helpful in protecting those with a lower immune response to the vaccines.
- Thank you to more than 500 of you who filled in our third dose survey last week; your experiences highlighted that by the time we closed it on 14 October, only 35% of those eligible for their third dose of Covid-19 vaccine have had it. Read more about the results here
- Unfortunately, we are still hearing reports of problems in accessing the third primary dose. Please see our vaccines section for guidance and advice.
- The third primary dose of the Covid-19 vaccination for severely immunosuppressed people is separate to the vaccine booster programme, which is being offered to a wider group. Arrangements for accessing the booster dose are on each UK nation’s website: England Northern Ireland Scotland Wales
- Some areas in England are offering booster jabs at walk-in centres for some groups of people. Please see your local NHS Clinical Commissioning Group website for the latest information.
- You may have seen some (inaccurate) reports on social media in the last few days suggesting people who are unvaccinated against Covid-19 who are on the waiting list will not be eligible for a transplant. You can receive a transplant whether you have had the Covid-19 vaccination or not, as long as you are eligible. There is more information from NHS Blood and Transplant here and in our transplant section.
- Please see our recent blog for more hints and advice about returning to work as Covid restrictions ease.
Kidney Care UK is campaigning hard for better support for kidney patients, including those who are immunosuppressed, as restrictions ease. 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.
Our work also includes campaigning for a third dose of the vaccine for vulnerable groups, briefing all parliamentarians and leading a coalition of 20 healthcare charities to ask employers to keep their immunocompromised staff safe at work. This letter can be downloaded and shared with your employer to help discussions about a safe return to the workplace. See how you can get involved.
Contents of this page
Click on any of the below to be taken to that section:-
- What should I do if I have symptoms of Covid-19?
- No one in my household has symptoms - what should I be doing?
- Which adults with kidney disease are clinically extremely vulnerable?
- Guidance and support for people who are in the Clinically Extremely Vulnerable Group
- Understanding and managing your risk
- Leaving the house and leisure activities
- Covid-19 vaccinations
- Covid-19 Question time webinars
- Going to school
- Children with kidney disease
- Other conditions
- Flu vaccination
- Employment and benefits
- Managing anxiety and fear
- Do not leave your home if you have Covid-19 symptoms arrange to have a PCR test and call your kidney unit for advice, and before attending dialysis or other appointments.
- Although restrictions are easing across the UK, people are advised to continue to be cautious. Everyone should follow the guidance for their own area and people with kidney disease should consider further precautions.
- Having moderate to advanced (stage 3+) chronic kidney disease increases your risk of becoming very unwell if you are infected with Covid-19. People with moderate to advanced CKD (stage 3+) fall within the ‘Clinically Vulnerable Group’ or the ‘Clinically Extremely Vulnerable Group’.
- Scotland and England are no longer using these terms but highlight that people formerly in these groups remain at higher risk and should continue to use protective measures.
- We also recommend kidney patients follow the guidance issued by the UK Kidney Association, which can be summarised:
- We continue to recommend 2 dose vaccination in everyone with kidney disease, which ever stage they are at.
- We recommend that people with kidney disease be offered and receive a third dose.
- We recommend that people with kidney disease who are likely to have a lower response to vaccination continue to use social distancing and protective measures, even after any changes in government guidance in relation to the general population.
- We do not recommend that patients reduce their immunosuppression during vaccination.
- We recommend regular Lateral Flow Tests and vaccination of households where kidney patients live.
Where does this information come from?
This information is produced on behalf of and with the kidney community, using the latest government and NHS guidance and that of the UK Kidney Association and its partners.
What should I do if I have symptoms of Covid-19?
If you have:
- a high temperature (over 37.8 degrees)
- a new continuous cough or
- a loss or change in your normal sense of smell or taste.
Then you should get a PCR test as soon as possible by visiting the NHS coronavirus page. Those unable to access the internet can call 119 in England, Wales and Northern Ireland or 0300 303 2713 in Scotland to book a test.
You must also start to follow government guidance on self-isolation, including the rules for your household. Support is available for people who are self-isolating, including financial support. Rules regarding self isolation for people who test positive and also their household members/close contacts vary between each country and are changing in some areas as restrictions lift:
If you have symptoms of Covid, 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.
If you are in the clinically extremely vulnerable group of patients, as soon as you develop symptoms of Covid-19 you should let your kidney doctor know, or GP if you are not under hospital care currently. You should also seek clinical advice using the NHS 111 online coronavirus service or call NHS111 if you don’t have internet access, telling the call handler about your kidney condition. In an emergency, call 999 if you are seriously ill. Do not change your medications unless advised to do so by your renal unit.
There is additional guidance for people with symptoms of Covid who live with those who are at higher risk from Covid-19, including kidney patients, which is aimed at keeping higher risk people safe.
What does my PCR test result mean?
A positive result means that you have a Covid-19 infection.
- You must stay at home for at least 10 days even if you are feeling well. Rules regarding self-isolation of close contacts vary between UK countries (see links above).
- If during the 10 days of isolation you feel your symptoms are worsening, or if after seven days you do not feel better then please use the NHS 111 coronavirus service, telling the call handler about your kidney condition, and keep your dialysis unit updated.
A negative result
- Usually means you did not have Covid-19 on the day that the test was done. You can stop self-isolating if you test negative, as long as you feel well
- You must keep self-isolating if you have diarrhoea or you’re being sick - stay at home until 48 hours after they've stopped
- If you still feel unwell or your condition is worsening, seek medical help as you may have something else wrong with you which needs treatment.
Does a negative result always mean that I don’t have Covid-19 infection?
- A small number of kidney patients have an illness typical of Covid-19 but have a negative swab result.
- This is more likely if you take medication to suppress your immune system, for example steroids or antirejection medicines for a kidney transplant.
- We are still learning about this type of illness, and the Coronavirus Antibody test (see below) may be helpful in this situation.
- It is always best to be cautious – if you feel unwell, please seek advice from your kidney unit as you may need further tests or treatment.
Testing for people who do not have symptoms
Rapid lateral flow tests are available for people who do not have symptoms of Covid-19, to help identify people who have the virus and prevent the spread. It is a Covid-19 test you do yourself. It shows you the result on a handheld device that comes with the test. See here for more information on getting lateral flow tests.
It is important to note that although regular testing with lateral flow tests is helpful in identifying cases and reducing the spread, these tests are not as sensitive as PCR tests (tests taken when you have Covid symptoms). It is therefore essential that you continue to follow careful hygiene measures and if you have any symptoms of Covid-19 you book a PCR test and self-isolate.
NHS Test and Trace
The NHS Covid-19 App in England and Wales will notify users of the app if they have been in contact with someone who later tests positive for the virus. It can be used to report symptoms, check into venues for contact tracing purposes and book a test.
If you have regular haemodialysis treatment, a “close contact” may include a patient who had dialysis at the same time as you even if they were not within 2 metres of you.
You must inform your kidney unit immediately if you are required to self-isolate and:
- You have regular haemodialysis or peritoneal dialysis – treatment must continue.
- You have a planned hospital treatment within 14 days. Your appointment should be done in isolation conditions or delayed.
- You have a planned hospital appointment within 14 days. Your appointment should be done by phone or in isolation conditions.
Antibody testing to check if you have/have had Covid-19
An antibody test is a blood test, either from your arm or finger. It tests if your immune system is making proteins (antibodies) to fight Covid-19. Antibodies usually develop about 7-14 days after infection starts. The tests are not yet widely available, but people who work in some health , social care or education settings (depending on where they live in the UK) or who have had a positive PCR test can get a free antibody test to see if they have had Covid before. The Covid Symptom Study Zoe has published a brief introduction to antibodies and antibody tests.
I would like to have an antibody test, should I buy a test from the internet?
- It is best not to do this as test kits available on the internet may not be reliable.
- It is best to talk to your kidney team as they may be able to arrange for you to have an antibody test.
For information about antibody tests after your vaccine please see the vaccine section.
Long Covid and the Covid Recovery Service
The NHS Your Covid Recovery is an online service for those who have had Covid-19 but have persistent concerns related to areas such as breathing or mental health (including 'Long Covid'). The recovery service hosts information from rehabilitation experts about how to manage ongoing symptoms and health needs at home, and on returning to work. It also signposts other useful places to get support and contains a helpful section for family, friends and carers of those who are recovering.
Cardiff and Vale University Health Board has launched Keeping Me Well, a website for those who are recovering from a Covid-19 infection along with prehab advice for those whose treatment may have been delayed as a result of the pandemic. All of the resources can be accessed in English or Welsh.
Are kidney patients affected by Long Covid?
It is likely that people with kidney disease have developed Long Covid but we do not know at this point whether it has affected their kidneys. The descriptions of long Covid are based on people’s symptoms like tiredness and difficulty thinking, rather than damage to organs. Studies are ongoing which may tell us about how people’s organs are affected. There are also a number of research studies looking at the causes and best treatments for Long Covid.
No-one in my household has symptoms - what should I be doing?
This depends on how vulnerable you are to Covid-19 and where you live. In general, the later the stage of your kidney disease, the greater your risk from Covid-19 and the more careful you need to be. The details of government guidance vary slightly between each country. Please follow the links for each country for more information. There is additional government guidance for people at higher risk from Covid-19 and the next section ‘I’m at higher risk, what should I be doing’ describes some of the additional precautions you may like to take if you are at increased risk from Covid.
England: Restrictions have now eased, see here for details of current guidance. The government have stressed that people should continue to act carefully and remind everyone that it is important to consider that others may wish to take a more cautious approach as we open up.
Safer working guidance still applies and employers still have a legal duty to manage risks to the health and safety of their employees, including from Covid-19. See our employment section for more details.
The Covid Winter Plan for England was published on 14 September, which outlines the Government’s strategy for dealing with the pandemic over the winter period. Should the pandemic worsen, the Government will consider introducing new protection measures including mandatory face mask wearing and work from home advice.
Wales: Covid restrictions eased in Wales on 7 August. See here for more details. Face masks are still mandatory in many indoor settings. Businesses and employers must carry out a specific risk assessment and people should still work from home wherever possible.
Scotland: Covid restrictions have lifted in Scotland. See here for more details. Face masks are still mandatory in many indoor settings, distancing requirements are in place in education and health settings and everyone should work from home where possible. People are also reminded to follow public health advice to avoid crowded places, follow hygiene measures and keep indoor areas well ventilated.
Northern Ireland: Information on current restrictions is available on the government website. Regulations remain in place that prevent gatherings/ parties of 30 people or more in domestic settings. There are no limits on the numbers of people who can meet up in people’s gardens.
You must wear a face covering when you go to any indoor public space, unless exempt. Government advise that employers should take every possible step to facilitate their employees working from home.
I am at higher risk what should I be doing?
People with moderate to advanced (stage 3+) chronic kidney disease (CKD) are at greater risk from severe complications from Covid-19 (see table below for more detail on the different stages of CKD). This greater risk places them within the Clinically Vulnerable Group (CV) or the Clinically Extremely Vulnerable Group (CEV) depending on the severity of their disease, the treatment they receive and other illnesses or conditions they have. Scotland and England are no longer using the terms CV or CEV, but highlight that people formerly in these groups remain at higher risk and should continue to use protective measures.
Clinically vulnerable people includes all those aged over 70, people under 70 with specific underlying health conditions (including anyone advised to get a flu jab each year on medical grounds) and pregnant women. This group were not advised to shield during the pandemic, but it was recommended they were particularly stringent about social distancing due to their increased risk from Covid.
Clinically extremely vulnerable people included those on dialysis, people with CKD stage 5 and people with a kidney transplant. See here for further details and here for government guidance and sources of support for CEV people. These groups were considered at highest risk from Covid-19 and had previously been advised to shield.
Those at higher risk might like to consider adopting the following precautions, which can reduce your risk of contracting Covid-19 (as well as any guidance in place for the wider population in your area):
- Get vaccinated and we also recommend eligible household members take up the offer of vaccination.
- Strictly avoid contact with someone who is displaying symptoms of coronavirus (Covid-19). These symptoms include high temperature and/or new and continuous cough, loss or change in sense of taste or smell.
- Asking friends and family to take a rapid lateral flow antigen test before visiting you.
- Meet people outside if possible. Open doors and windows to let in fresh air if meeting people inside.
- Try to avoid crowded spaces.
- Wear a face covering when it's hard to stay away from other people – particularly indoor 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).
Germ Defence is a website developed by Bristol, Southampton and Bath Universities to provide advice on how to reduce your risk of transmitting Covid-19 virus in your home. It is available in a range of languages
Which adults with kidney disease are clinically extremely vulnerable?
There are 3 ways you may be identified as Clinically Extremely Vulnerable or at highest risk:
- You are in at least one of the groups listed below.
- Your doctor has added you to the Shielding Patient List because, based on their clinical judgement of your condition, they deem you to be at high risk of serious illness
- You have been identified through the Covid-19 Population Risk Assessment at being high risk of serious illness if you catch the virus.
Groups included in the Clinically Extremely Vulnerable category (See our information on children for advice for this group):
- You have a transplant
- You are on dialysis
- You have CKD stage 5 and are not on dialysis and have not had a transplant. The definition renal units will be using to identify adults (18+) in this group is as follows:
- 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).
- CKD stage 5 (or G5 A1-3) is defined as a GFR less than 15 ml/min.
- It excludes individuals who temporarily drop below 15 ml/min (e.g. acute kidney injury)
- If you over 70 and are on any form of immunosuppression or have been on one in the past
- Your kidney disease is caused by inflammation, a condition of your kidneys (sometimes called an autoimmune condition) AND you are in one or more of the following patient groups:
- If you have had within the last 6 months treatment for a flare of your kidney disease (“induction”) – with high dose steroids (>20mg per day of prednisolone) and / or cyclophosphamide / rituximab or other biologic drug.
- If you are taking more than 10mg of prednisolone every day
- If you are over 70 years of age
- For children, the medicine dose that puts them in the extremely vulnerable group may be lower, please contact your kidney team to clarify if they have not already done so.
What is an inflammatory condition?
Inflammatory conditions of the kidneys include but are not restricted to vasculitis, systemic lupus erythematosus (often called lupus), membranous nephropathy, minimal change disease, IgA nephropathy, FSGS, anti-GBM disease (Goodpasture’s disease).
Our clinical colleagues adjusted the original criteria determining which people with kidney disease caused by inflammation should be included in the Clinically Extremely Vulnerable group. The revised criteria is in the list above. The changes are based on data about which people with kidney disease are at highest risk from Covid-19. Please speak to your kidney doctor if you have any questions.
What are immunosuppressive medicines?
Immunosuppressive medications include: Azathioprine, Leflunomide, methotrexate, MMF, ciclosporin, tacrolimus, sirolimus and belatacept.
Government guidance and support for people who are in the Clinically Extremely Vulnerable Group
Advice that people in the CEV group should shield paused across the UK in April 2021. This means people formerly advised to shield should follow the same guidance as for the rest of the population but you are advised to take extra steps to minimise your risk of exposure to the virus. Links to each country’s current information and sources of support for people in the clinically extremely vulnerable group are listed below.
The Government has announced that the Shielding Programme for clinically extremely vulnerable people (CEV) in England is closed. The government has said that centralised guidance for this group should be replaced by individualised advice from the person’s clinician about additional precautions they should take. It is recommended that you raise concerns with your kidney specialist at your next routine appointment and that your GP is unlikely to be able to advise on shielding issues, so you should not contact them with queries. People who had previously been advised to shield have been written to with more information.
However, the Government have confirmed they will continue to assess the risk from Covid for people who are most vulnerable and take appropriate measures. Kidney Care UK will continue to campaign for appropriate support for people at risk from Covid and have raised concerns about the ability of the Government to deliver advice and support efficiently now the programme is closed.
The NHS Covid advice notes that many people who were formerly in the Clinically Extremely Vulnerable Group are still at high risk from Covid and recommend additional precautions.
Support for clinically extremely vulnerable people in England
The NHS Volunteer Responders programme is still available to help support those who need it. Volunteers can collect and deliver shopping, medication and other essential supplies. Call 0808 196 3646 between 8am and 8pm, 7 days a week to self-refer or visit the NHS Volunteers website for further information. There may also be other voluntary or community services in your local area that you can access for support.
The Health Minister has written to Clinically Extremely Vulnerable people to explain that while shielding is not going to be introduced, some protection measures remain.
Support for Clinically Extremely Vulnerable People in Wales
If you need support and you do not have friends, family or neighbours who are able to help you, you should contact your local council or voluntary organisation. The Welsh Government has published a contact list for support in each local authority.
You should speak to your pharmacy if you need help with picking up medicines
The Government have also published a list of sources of help with essential shopping.
There is also a Government service available if you, or someone you know, is affected by Coronavirus (COVID-19) and needs additional support. This will help you to find information for a wide range of matters, from paying bills to finding somewhere to live.
Government guidance for CEV people in Northern Ireland.
Support for Clinically Extremely Vulnerable People in Northern Ireland
You should go to the Community NI website where you can input the help that you need and your location to be matched with a voluntary organisation offering that help.
There is also an Advice NI helpline to help vulnerable groups access information and advice: Freephone 0808 802 0020 or you can get in touch by email ([email protected]) and text message (text ACTION to 81025).
Specific advice has been published for Clinically Extremely Vulnerable people in Scotland, as many restrictions are eased there from 9 August. Scotland confirmed on 14 September that they will continue to maintain their register of people at highest risk from Covid, which they have used throughout the pandemic to communicate with all those at highest risk and ensure that they have advice and support, although this will be kept under review.
Support for Clinically Extremely Vulnerable People in Scotland
You should visit the Scottish Government Covid-19 support page for advice if you need support. A helpline (0800 111 4000) has been set up for those at increased risk who don’t have a support network, such as family or existing community support. This helpline will continue to be available even though shielding is now paused.
Callers will be connected to their local authority who will help them access the services they need, such as:
- essential food and medication
- links to local social work services for vulnerable children or adults
- emotional support
- contact with local volunteer groups
The helpline is open from 9.00am to 5.00pm, Monday to Friday.
Why has advice to clinically extremely vulnerable people changed over time?
Advice about the measures you should take to keep safe change as the infection rates across the UK change and more is learnt about the virus and its effects. In addition, Government have explained that during the first period of national shielding in 2020, many people found the shielding advice very restrictive. They aim to make guidance a better balance between giving people practical steps to help keep safe while reducing some of the potentially harmful impacts on mental and social wellbeing of previous shielding guidance.
Support with shopping
Priority supermarket online delivery slots for clinically extremely vulnerable people who need them ended on 21 June 2021, although some supermarkets including Sainsbury's, Tesco and Asda are continuing their schemes for the time being.
If you are using a voluntary service to help you with shopping, or friends and family are shopping for you, you may like to refer them to the new British Dietetic Association’s guidelines for a kidney friendly shopping list.
In Scotland if you do need extra support getting food, medicine and other essentials, you can call the National Assistance Helpline on 0800 111 4000 (Monday-Friday, office hours). Further information is available here.
Advice is available from the Welsh Government on getting food and essential supplies.
Understanding and managing your risk
Many people with kidney disease will be used to making decisions about risk and will now be making choices about undertaking their usual activities based on their own circumstances, for example the number of cases of Covid in their area, ease of access to quiet outdoors areas or whether they need to work outside the home.
When coming to a decision, it is important to consider the important benefits that spending time outdoors and interacting with other people can have for your physical and mental health. However, people who are clinically extremely vulnerable remain at high risk if they catch Covid-19 and you are strongly advised to follow the guidance for your local area and adopt protective measures. There is specific advice about returning to work safely in our employment section. See our guidance on leaving the house and leisure activities for further advice on how to keep safe.
What is my individual risk and who can I discuss this with?
It is really difficult to measure exactly a person's individual risk. You may find it helpful to read this blog from Dr Tony Williams on assessing personal risk of Covid and tools that can help with this. You can also discuss individual risk with your renal team who can help you think through your own situation.
How likely you are to catch Covid-19 depends to a great extent on how much the virus is passing from person to person in your local community which changes over time. You may find it helpful to look at how many cases of Covid-19 there have been in your local area in the past week. Postcode search tools are available from the BBC and the Government. You can further reduce your risk of catching Covid-19 by following measures you will be familiar with such as social distancing.
How likely you are to become severely unwell if you do become infected with Covid-19 depends on many things and in particular, your age, ethnicity, sex (higher risk in males) and whether you have other health conditions. Being on dialysis, having had a kidney transplant or having CKD stage 5 unfortunately does increase your risk of becoming severely unwell with Covid-19 should you become infected. People with kidney disease often also have other health conditions such as diabetes and heart disease which increase their risk further
Risk calculators (where people can work out their own level of risk) are available but some are not detailed enough to be helpful. For example, some include kidney disease in general but do not break down this category into early kidney disease, people on dialysis or those with transplants. The following tools do enable a more detailed assessment of risk:
The Covid-19 Population Risk Assessment tool has been developed to enable a more individual approach to risk assessment, and has identified more people who are at high risk from a very poor outcome from Covid-19. It is for use by clinicians rather than the general public. It may underestimate risk for health conditions that have been on the Government’s list of conditions that make people clinically extremely vulnerable since the beginning of the pandemic. This is because many people with those conditions have been shielding and therefore lower numbers may have lost their lives to Covid than would otherwise be expected.
There is also the ALAMA Covid-age tool which can estimate your ‘Covid age’ to help predict your vulnerability to Covid. This is based on the evidence that age is a very important factor in determining a person’s risk from Covid-19. Taking into account age alone, a 25 year old is at lower risk from Covid-19 than a 50 year old, who is in turn at lower risk than an 80 year old. Having other risk factors, such as kidney disease, will increase your ‘Covid-age’. A 30 year old with a well-functioning kidney transplant would have a ‘Covid-age’ some years above 30. However, their risk may still be moderate compared to people aged over 70 with no other risk factors.
We recommend you read the guidance first, before using the Covid-age tool. The Alama Covid-age tool can be used as part of a workplace risk assessment. See our employment section for more information.
Risk within dialysis units
People who receive dialysis within a unit may be concerned that their risk is increased by other patients within the Unit. Renal units have put in place lots of measures to help to keep dialysis units as safe as possible for people. They will continue to assess and triage everyone when they arrive for dialysis and they have very clear infection control procedures that they follow. Transport will also continue to do the same.
If you would like to know more about how these measures are being put in place in your own unit or if you have any concerns, your renal team would be happy to talk to you about this.
Here is a helpful video which explains what safety measures have been put in place in dialysis units.
The UK Kidney Association, in collaboration with clinical and patient groups, have produced a set of infographics to help patients understand how their kidney disease and treatment affects their risk, the level of risk of different activities and how kidney units are keeping you safe during the Covid-19 outbreak.
Leaving the house and leisure activities
This section should be read in conjunction with guidance that applies in your area, as there may be additional restrictions governing activities and meeting others. You may also find the infographic at the end of this section showing the risk of undertaking various activities helpful.
You may also find it helpful to look at the summary of advice given about keeping safe while getting back to normal life from our recent Covid-19 webinar.
Can I go outside at all?
It is possible to go outside whilst maintaining social distancing and there can be important benefits to mental and physical health from spending time outdoors. It is recommended you avoid busy areas. If the restrictions in your local area allow it, it is possible meet up with people from outside your own household, whilst maintaining social distancing, although you might consider keeping the numbers of different people you meet with low. You may choose to meet with people outdoors or in well ventilated indoor areas. See individual guidance for each UK country.
Should I wear a face covering?
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. The evidence suggests that face coverings do most to protect against spread of the virus from the wearer to others (rather than the other way around).
Face masks are masks normally used by healthcare workers and meet particular standards. Face coverings can be made at home out of fabric, but still may offer some protection.
The rules regarding face coverings vary between UK nations and we recommend checking local guidance for the rules in your area (England, Wales, Scotland and Northern Ireland). In addition to that there are some local rules on face mask wearing, for example, face masks will remain mandatory on public transport in London and bus stations and interchanges in areas of South Yorkshire where the Mayoral Combined Authority operates.
There are exemptions for children and people with impairments or disabilities which mean they cannot wear face coverings. People are not required to prove they are exempt and it is for individuals to choose how they would want to communicate this to others. For those who would feel more comfortable showing something that says they do not have to wear a face covering, exemption cards are available to print or display on mobile phones. Kidney Care UK provide ‘Distance Aware’ badges to act as a prompt to others that you wish to keep at a distance from others. The shield symbol used was developed through a national campaign with other organisations and has been adopted by the UK and Welsh governments and is supported by Twitter.
It is recommended that dialysis patients should wear face masks during transport to and from dialysis, whilst in waiting rooms and during treatment, and in most cases should be given these masks by their unit.
When you wear a face mask it is really important to use it properly and dispose of it correctly, otherwise it can do more harm than good. The following organisations have produced guidance on face masks and coverings:
- World Health Organisation video showing how to use a mask.
- Birmingham University infographic on how to wear a face mask or face covering.
- Scottish Government guidance about face coverings
- UK Government have produced guidance about how to wear and make a cloth face covering.
Should I wear gloves? And if so, should I dispose of them immediately on return to home?
No – there is no advice or requirement for kidney patients to wear gloves when they leave the house. The measures that are most important in reducing the risk of catching or spreading Covid-19 are regular, thorough handwashing (warm soapy water for 20 seconds), avoiding touching your face and keeping far apart from other people (current advice two metres). In theory, wearing gloves might actually increase the risk of catching or spreading Covid-19 as they may provide false-reassurance (and therefore reduced uptake of more important measures such as handwashing) or allow spread of the virus when they are taken off again.
What about my monitoring and blood tests?
The key in all of this to protect your safety, so you will still have necessary blood tests, medications and treatments. It is important not to make any changes to your treatment plan, unless advised to do so by your care team, and it is important to keep attending all appointments. Be reassured that your unit will ensure attendance is COVID safe. You may have concerns about how you travel to your unit and should discuss this with your team. You will be advised not to attend if you have symptoms of a possible COVID-19 infection but your team will still want to know if you are unwell so do contact them.
The NHS have emphasised the importance of continuing to seek help for any health concerns, outside of Covid-19 and have provided information on the Health at Home Website on how to access GPs; order repeat prescriptions; advice about managing long term conditions and maintaining mental and physical wellbeing.
There are significant risks of not attending for hospital appointments / blood tests. These include the risks that a change in the function of your kidney transplant might go unrecognised – which might then result in irreversible loss of kidney transplant function. Similarly, other new health problems may go unrecognised. These risks need to be weighed up against the risks of catching Covid-19 in a hospital waiting or clinic room.
The risk is not being able to check your kidney function and if any adjustment to your medication is needed. Please discuss this with your kidney unit. Your doctor should be able to advise you in more detail based on your history
Can I go to the shop?
If you have been told to self-isolate, avoid visiting shops or advised to shield you will need to ask a friend, family or neighbour to get your shopping items. You may also be able to get support from your local authority, NHS Volunteers or Covid-19 Mutual Aid group, local community groups, or Community NI in Northern Ireland.
If you have not been advised to self-isolate, avoid shops or shield, you are advised you can choose to go to the shops (following social distancing and hygiene measures), although clinically extremely vulnerable people may prefer to try to choose a quiet time to shop.
Are clinically extremely vulnerable people advised they may go into restaurants/ pubs etc?
Providing local rules allow it you may go to pubs and restaurants. You may choose 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?
The risks of travelling on public transport are significant. At present, our UK Kidney Association colleagues advise that clinically extremely vulnerable patients should avoid all non-essential travel on public transport. It is best not to travel at rush hour when you cannot avoid contact with others. If you cannot avoid travelling on public transport you should try and travel outside of rush hour, so you can keep your distance from other passengers. You should try not to touch anything if possible and sanitise your hands before and after travelling. The Access to Work scheme may be able to offer support, such as covering costs of safe travel to and from work.
Should I let people in the house for emergency maintenance?
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.
Is it safe to have a takeaway?
Yes. The Food Standards Agency advises that the risk of catching Covid-19 from food is very low. If having food delivered, you should ask the delivery driver to ring the doorbell, leave the food on the doorstep and step back at least two metres. You can minimise the risk by decanting the food into a clean container, disposing the packaging and washing your hands thoroughly before eating. Use cutlery; don’t eat with your hands.
Can I go to the hairdresser/barber?
You’ll be able to visit your hairdresser/barber if local rules allow it. If your hairdresser/barber is able to offer you an appointment without other customers present, this is advisable. You may also choose to wear a mask and it may be mandatory to do so under local rules.
Can I go to the gym/play sports?
You may visit the gym or play sports if local rules allow it, although it is advised CEV people should minimise contact with people from outside their household so please keep socially distanced from other gym users. Please take care to sanitise any equipment before you use it. Please ensure you wash your hands thoroughly after exercising. You should spend no more than an hour in the gym. Wear a mask if possible.
Playing sports outside is relatively low risk. Please ensure you wash your hands afterwards. If you are playing sports inside, please avoid body contact with other participants. Limit any activity to no more than an hour and make sure to thoroughly wash your hands afterwards. Wear a mask if you can.
Going to school
The Government have published information for parents and carers about the measures in place in early years providers, schools and colleges in England during the pandemic, including regular testing.
Headteachers may require staff and visitors to wear face coverings.
Children with kidney disease and school
Most children who were judged to be clinically extremely vulnerable are advised to attend school, while practising frequent hand washing and social distancing. There may be exceptions to this for a small number of children who are still advised to shield (see section on Children with kidney disease). If you think this may be relevant to you or your child, please discuss this directly with you GP or hospital specialist.
Please see the guidance from the British Association for Paediatric Nephrology and guidance for each UK country for more detailed advice on children with kidney disease returning to school and discuss any questions with your hospital team.
Brothers and sisters of children with kidney disease should go back to school or college, as long as the environment has been made Covid-safe, in line with the government guidance for each UK country.
Is it safe for children of kidney patients to go back to school?
There is no clear-cut answer to this. In theory, it is possible for anybody – children included – to spread the coronavirus. However, there is limited evidence that spread via schoolchildren is a common route of transmission in the UK at present. One of the key things is that you need to have a discussion with the school to see what they are doing to reduce risk. This should be in line with the published guidance for each UK country. If there are any adjustments that you need to make, or you would like the school to make, then you can discuss with the school. You should also follow careful hygiene measures to minimise risk of transmission.
Other measures that schools may put in place include staggered start and finish times to reduce number of people at drop off and pick up times. They should also make sure children are washing their hands regularly and implementing an enhanced cleaning regimen in the school.
When children return from school they should shower and wash their clothes.
When you are travelling to and from school you should consider taking measures such as wearing a face mask and keeping 2m away from others.
- The vaccines have all passed stringent safety tests before being approved. They are not live vaccines and there is no evidence that they would lead to rejection of a kidney transplant.
- People with kidney disease on immunosuppressants may have a weaker response to the vaccines, but kidney doctors recommend that it is still important to have your vaccination. Some protection is better than none.
- Even after you have had both doses of your vaccine, clinically extremely vulnerable people should continue to carefully follow precautionary measures.
- Kidney Care UK welcomes the guidance for a third dose of the vaccine for people who are immunosuppressed to provide additional protection for those who may not make as strong a response to the Covid vaccines as others.
- On 1st September and again on 30th September guidance was issued to Trusts and GPs on vaccinating immunosuppressed individuals with a third primary dose.
- A booster dose is being rolled out for people in priority group 1-9, which includes those with stage 3 and 4 CKD, as well as those in later stages. It is anticipated that a further booster dose will be offered to immunosuppressed patients in spring 2022.
- Kidney Care UK is leading a coalition of 20 healthcare charities to ask employers to keep their immunocompromised staff safe at work. See how you can get involved.
Rollout of a third Covid-19 vaccine dose
A third dose of vaccine is now being rolled out to severely immunocompromised adults and children aged over 12. This is important because a third dose is for people who may not have had a good response to the first two doses, including those who have kidney transplants or are immunosuppressed because they have certain kidney diseases. It is different to the booster dose which is recommended for a wider group of people to maintain protection over winter.
How will I access a third primary Covid-19 vaccine dose?
In Wales and Scotland and Northern Ireland, immunocompromised people should be automatically invited by the NHS for their third dose. We understand that this is not happening consistently so please do get in touch to tell us if that is the case.
Access to the third primary dose varies according to local arrangements. Therefore, you may be contacted by your hospital, your GP or a different NHS organisation. We are very aware that there are problems with receiving a third dose of the vaccine. If you believe you are eligible for a third primary dose and have not yet been contacted, we recommend you call your GP or hospital team to ask what arrangements are in place in your area. We set out below the process that should be in place:
Hospital renal teams have been asked to identify their patients who were severely immunosuppressed at the time of receiving their initial doses of Covid-19 vaccine. They should have written to all their patients, copying in their GPs, to tell them that they are eligible for a third primary dose by Monday 11th October. Some hospital trusts run vaccine hubs and can invite their patients to these.
If a hospital trust does not run a vaccine hub they should ask the person’s GP to organise a vaccine for them,
GPs have also been asked to check their patient lists for any patients who may be eligible. By 11th October, they should have 1) invited their patients for a 3rd vaccine if they are running a vaccine service themselves or 2) sent the names of eligible patients to the local commissioning organisation (Primary Care Network (PCN) or Clinical Commissioning Group (CCG)) so that they can organise for that person to have a vaccine. Most GPs are not running a third vaccine service.
NHS England have now confirmed that they will be sending letters and/or texts to people who are eligible for a third primary Covid-19 vaccine dose. These will confirm eligibility and you should be able to use the text or letter to book your appointment.
Some people who have not been able to get the information they need from their GP have had success getting a third dose by telephoning their CCG and asking about a local vaccine service, others have gone to the local walk-in centre and shown the eligibility letter that they have received from their hospital consultant. Sometimes they have had to wait while the local service looks into it, but this approach has sometimes been successful. Of course this relies on you having received the eligibility letter from your consultant and being happy to attend a walk in centre.
The National Booking Service, which you can get to via the online service or calling 119, does not offer third dose vaccines and often have little knowledge of it so please do not contact them about third doses. They organise booster doses for people who have received invitations for a booster (see below).
Following reports from Kidney Care UK and other charities about problems accessing the third dose, NHS England sent the following letters to GPs and hospital trusts to explain what they need to do (by 11th October) to help people access the third dose. Some people have found it helpful to share these documents with their clinicians:
By 12th October we continued to hear of significant problems with accessing the jab. A big thanks to more than 500 of you who filled in our survey last week; your experiences highlighted that by the time we closed it on 14 October, only 35% of those eligible for their third dose of Covid-19 vaccine have had it. We have analysed the information you gave us and spoken to NHS leaders. Here is a summary of the survey results.
What is the difference between a third dose and a booster, and which vaccine should I receive?
The THIRD Covid-19 vaccine is for a group of immunosuppressed individuals who may not have generated a full enough immune response after their first two doses. The JCVI advise an 8-week gap between 2nd and third dose, unless for example someone was imminently going to have a transplant and be immunosuppressed. A third dose 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.
This is different to the BOOSTER dose which is being given to a wider group of people (including adult household contacts of immunosuppressed people), six months after their second dose, to extend the duration of time they are offered protection by the vaccine. Pfizer or a half dose of Moderna is recommended, regardless of which vaccine was given as a 1st and 2nd dose. 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. You have to wait for an invitation from the NHS before you can book your booster vaccination. Here is information from each UK country about their booster programme:
Should patients accept a booster if they are offered that before a third dose?
We have been advised that if you are immunosuppressed and are offered a booster dose before you are offered the 3rd primary dose, you should accept the offer. Your notes will have to be updated afterwards to record this as a 3rd dose, in case a booster dose is offered to you in future. Decisions on if and when to offer a booster dose to people who are immunosuppressed have not been made yet, but it is expected this may happen in Spring 2022.
There will be no difference in the vaccine you are offered if you accept the booster dose invitation instead of the third dose invitation provided that you are given a Pfizer vaccine. However, from mid-October a half dose of the Moderna vaccine may be offered as a booster dose in some areas. It is recommended that immunosuppressed people receive a full dose of Pfizer or Moderna as a third dose so you may wish to check that you receive a full dose of either vaccine. There is information about this on page 23 of the Green Book.
Can I have a third primary dose if my transplant was a long time ago?: There were some unclear messages about third dose eligibility for people who had their transplant some time ago but, in response to our query, Public Health England explained it is people who have received immunosuppressive therapy in the past six months that are eligible, regardless of when their transplant occurred. This is now confirmed in the Green Book, on page 20.
Side effects: There is no information to say that reaction to a 3rd vaccine dose will be worse than that to a previous dose, with a mild indication from Israeli data that it may be slightly less.
Can I have my third primary dose or booster dose at the same time as my flu jab?: Yes, see our flu vaccination section for more information.
A statement from the UK Kidney Association on the third dose roll out can be downloaded from their website.
Those with less serious immunosuppression are not included in this advice but are likely to be eligible for another dose as part of the booster programme.
How well do the vaccines work for kidney patients?
As the vaccine is new, we do not yet have all the answers to how kidney patients respond. However, it is thought that although kidney patients may not respond as well as the general population, the vaccines will work well enough make it worthwhile having the vaccine, especially given the high risk to kidney patients from Covid-19.
In summary, the findings from early studies suggest a lower immune response among some kidney patients, particularly among older patients, those who are on anti-metabolites (mycophenolate or Azathioprine) or higher combined immunosuppressive drugs, and those with worse kidney function. So younger transplant recipients with a well-functioning kidney are likely to have a better response to the vaccine. People on dialysis may also have a reduced response to the vaccine. Please read the section below on research to find out more detail about ongoing studies.
People with a sluggish immune system tend to respond better to the second dose and some early studies report a weak antibody response in certain patient groups after the first vaccine dose but a stronger response after the second (for example this JAMA study). These findings are similar to what we have seen in other vaccines, like the flu jab. There is also emerging evidence that a third dose of the vaccine leads to a better immune response among kidney patients.
Researchers have reminded us that a lack of antibody response does not mean a lack of protection from severe disease and death from Covid. Data 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.
Please see our blog from Dr Ed Carr, in which he answers a range of questions on the Covid-19 vaccine and what emerging research can tell us (information reflects evidence available at the time of writing).
Please also see the summary of our recent webinar, which discusses what research has shown so far about how well kidney patients respond to the vaccine.
What research is underway on how well kidney patients respond to the vaccine?
Separate studies are required to find out how well kidney patients respond to the vaccine. Currently there are studies to try and help understand this which include the following:
- Looking at data from registries such as the Renal Registry on how many people are catching Covid and going into hospital or dying. These can see how the vaccine affects the number of infections (infection rates) and whether it affects the outcome (for example being admitted to hospital, needing to have care in critical care units or dying from COVID 19). This is sometimes known as real world evidence.
- Laboratory studies where experiments on blood samples donated from patients can detect immune responses to the vaccine.
- Looking at whether the tests taken in the laboratory can predict what happens to kidney patients in the real world for example whether the laboratory tests predict the risk of catching COVID 19 or being admitted to hospital.
- Looking at the effect of a third dose to improve vaccine response
The UK Renal Registry and NHS Blood and Transplant have reported on the real world evidence about how many vaccinated kidney patients are contracting the virus so far. At a UK Kidney Association webinar for researchers and clinicians, Dr Rommel Ravanan from NHS Blood & Transplant (NHSBT) described how we are seeing fewer people who have had transplants becoming ill or dying from Covid-19 infections after vaccines, which is reassuring. In addition, NHSBT and the British Transplant Society issued a joint statement on the Covid vaccine. They compared how many people who had received one or both doses of the vaccine caught Covid and died within 28 days with how many people who have not had the vaccine. Far fewer vaccinated people caught Covid and died.
Several studies are looking at vaccine responses in kidney patients in the laboratory. The Octave study is investigating the effectiveness of Covid-19 vaccines in people with suppressed immune systems. The Imperial College arm of the study leads the kidney patient arm of the study and will also involve other kidney units. It is performing an in-depth analysis of the immune response of 150 kidney patients on haemodialysis, including both serum antibody and t-cell response. The study is also testing blood samples from an additional 850 kidney patients for antibodies. The study will also look at how the vaccine protects against Covid infection and whether the different vaccines produce a different response.
A preprint (an academic paper which has been shared publicly but not yet peer reviewed or published in a journal) of results of an observational study which includes kidney patients who are taking part in Octave has been published. It found that previous infection with COVID 19 changed the response to vaccine. It found that in the patients who were vaccinated and who had not previously had a Covid-19 infection, all antibody and T-cell responses were weaker compared with healthy controls. In contrast, almost all of the patients studied who previously had Covid-19 infection showed an antibody response to the vaccine.
The study found:
- Of the patients who had not had COVID-19 infection, over one half (55%) had detectable antibodies following vaccination
- Antibody levels varied between the vaccine types. Patients who received the Pfizer vaccine were more likely to have antibodies (approximately 7 in every 10 patients) compared with those who received AZ (approximately 4 in every 10). This would be expected as similar results are found in healthy people where the response to AZ is less than the response to Pfizer.
- Approximately, only 1 in 4 (26%) of the 106 transplant patients tested for T-cell responses had a detectable level of these cells
- Patients who were more likely to have antibodies detected were more likely to have:
- Received the Pfizer vaccine
- Had received the vaccine at least one year after their transplant.
- Be receiving minimal immunosuppression (1 type of medication alone, rather than a combination of 2 or more anti-rejection drugs).
The study’s authors reminded us that no antibody response does not necessarily mean no protection from vaccines as observational studies describe patterns but do not necessarily define what happens subsequently. The real world evidence discussed above shows that fewer vaccinated people are becoming very ill and dying from covid than those who are unvaccinated.
A preprint of initial data looking at a wider group of patients participating in the OCTAVE study found that a significant proportion of people with suppressed immune systems (including people on haemodialysis receiving immunosuppressive therapy and with Rituximab treated ANCA-Associated Vasculitis) have a lower antibody response after two doses of COVID-19 vaccine. However, T-cell response (another facet of immune response) was similar to the general population. More research is needed to see what this means for protection.
Overall, the Octave initial data showed that 89% of immunocompromised patients generated antibodies 4 weeks after two vaccines. However, 40% mounted a low immune response and 11% did not make any antibodies. It is important to note that we do not know what this means in terms of how well a person is protected by the vaccine. Antibody response varied by condition and treatment received - 87% of those with Rituximab treated ANCA-Associated Vasculitis, 42% of those on haemodialysis receiving immunosuppressive therapy. On the positive side this study showed that 71% of those on haemodialysis (with no immunosuppressive therapy) responded as well as healthy subjects.
An OCTAVE sub study, called OCTAVE DUO, has now started; this is to assess antibody responses following a 3rd vaccine does in people who did not make an antibody response following 2 doses in the OCTAVE study. If you qualify for this study, your unit will invite you to take part.
A European study found that patients on dialysis were able to get a high rate of antibody production with 2 doses, although patients with immunosuppression were not as able to get this rate. The study found a difference between the effects of 2 different mRNA vaccines (Moderna and Pfizer). They have also noted vaccination reduces the severity of Covid-19 symptoms in people who did contract Covid-19 after vaccination with more asymptomatic disease, lower hospital admissions and a reduction in death in patients on dialysis.
Another study (funded by Kidney Research UK, the NKF and several Kidney Patient Associations) which assessed how effective Covid-19 vaccines are in kidney patients on haemodialysis has been published in the Lancet. It found that, unlike the general population, many people who have kidney failure and who are on haemodialysis had a poor antibody response to two doses of Covid-19 vaccine. The research also found that the antibodies are less effective against the delta variant; and that people on haemodialysis have a better response to an mRNA vaccine (such as Pfizer) than an adenovirus vaccine (such as AstraZeneca).
This adds to the existing research from the UK and elsewhere showing that many people who are on immunosuppressants to prevent kidney transplant rejection, or for treatment of kidney disease, have a weaker immune response to two doses of the Covid-19 vaccine. This leaves many thousands of kidney patients who have had two doses of vaccines without as much protection from Covid-19 as the rest of the population.
A small US study of 30 patients suggests a third dose of Covid-19 vaccine can increase the number of antibodies produced for some kidney transplant patients who had not mounted a strong response previously. On 29 July Pfizer announced that the third dose could ‘strongly’ boost protection against the Delta variant. Whilst not scientifically reviewed the company claimed protection against the Delta variant was 5 times higher in adults aged up to 55 who received a third dose of the vaccine. It also said that a third dose in older age groups could provide 11 times more protection against the Delta variant.
In July, Public Health England published findings which indicate the Covid-19 vaccines offer good protection against symptomatic cases of the virus for a substantial number of people in at risk groups. Kidney Care has responded to this to ask for a greater level of detail as we are concerned it could give a false sense of reassurance. Following interventions from Kidney Care UK and other charities, Public Health England has now updated their advice to note that “there will be people with more severe forms of illness – particularly in the immunosuppressed group – who may not respond as well to the vaccines, and we recommend they seek advice from their specialists.”
As well as national studies, many centres are undertaking local research studies including on people with kidney disease not requiring renal replacement therapy and patients with glomerulonephritis.
How can I find out how much protection the vaccine gives me? Should I get an antibody test?
Unfortunately, at the moment it is not possible to determine exactly how well the vaccine is protecting a person against Covid-19. We recommend speaking to your kidney doctor about your own circumstances. We do not recommend that individuals undertake antibody tests without first discussing with your kidney doctor as they will not give a clear picture of how well protected you are from Covid-19. In addition, there are many different types of antibodies and most antibody tests will only test for one specific antibody which will not give a full picture of your immune response. A positive antibody test does not necessarily mean a person is protected against Covid-19 and a negative test does not necessarily mean you are not protected.
Ongoing research will tell us more about how antibody levels relate to protection from Covid-19. It should also tell us more about other facets of the immune system such as T-cells which are also important in protection. Vaccination trains the body to respond to infection in multiple ways. Antibody response is only one facet.
If you do have an antibody test via your hospital kidney team, your doctor will be able to help explain what the results mean for you. This Q&A from Imperial College has lots of useful information about vaccines and the antibody response.
In August 2021, the UK Government launched an antibody surveillance programme, for people with a positive PCR test result, which will help scientists learn more about how the Covid-19 vaccines are protecting people and help identify groups of people who do not develop an immune response. It will monitor levels of antibodies in positive cases across the UK. The data collected will help estimate the proportion of those who got COVID-19 despite developing antibodies as a result of having a vaccine or previously catching coronavirus.
What about other treatment options for people without functioning immune systems?
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. There are trials of antibody treatments for people with severely impaired immune systems who would not respond to the vaccine. These antibodies can be manufactured and given to people directly, although the protection may not last as long as a vaccine. Many people with kidney disease are likely to respond well enough to the vaccine so as not to need the antibody treatment.
The Recovery trial has found that an antibody treatment can reduce the risk of death among people in hospital with severe Covid who have not produced antibodies of their own. It involves infusing two specific antibodies into the patient which then work to neutralise the effect of the virus.
This monoclonal antibody combination treatment, called Ronapreve (developed by Regeneron and Roche), has been approved by the MHRA for use in the prevention and treatment of Covid-19 infection. The UK Government has confirmed it will be available for use in the NHS for patients hospitalised with Covid who are unable to mount a good antibody response to Covid from late September.
The Government has also reached a deal for the supply of two new antiviral treatments for Covid, should those treatments be approved by the Medicines and Health Regulatory Authority (MHRA). Antiviral medicines can treat people who are either infected by or exposed to a virus and may be helpful in protecting those with a lower immune response to the vaccines.
Which vaccine is best for kidney patients?
There is now some emerging information from studies looking at laboratory effects comparing different vaccines both in the UK and in Europe. These studies are reviewed regularly by the JCVI and help to decide how to best protect kidney patients including patients on immunosuppression from COVID 19.
There are recommendations for specific vaccines amongst the under 40s in the general population, but these do not apply to people with underlying health conditions.
Should people who have already had Covid get vaccinated?
Yes, although you should wait at least 28 days after testing positive for Covid-19 before receiving your vaccination. 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.
Who is being invited for vaccination?
The following government websites have details on who is currently being invited for vaccination in each UK nation and how you will be contacted:
Children and vaccination
The Government has announced that the following groups are now being offered two doses of the vaccine:
- Children aged 12 to 15 at increased risk of serious Covid – such as those with severe neurodisabilities, Down’s syndrome, or immunosuppression with an interval of 8 weeks between the two doses.
- 12 to 15-year-olds who live with a severely immunosuppressed person
- Children who are aged 16 or 17.
Children aged between 12 and 15 are being offered one dose of the Pfizer vaccine.
The JCVI currently advise children aged 12-17 are offered the Pfizer-BioNTech vaccine as it was originally the only one approved by the MHRA for use in children aged 12 to 17 in the UK. The MHRA have now also approved the use of the Moderna vaccine (SpikeVax) in this age group and the JCVI will advise on whether this age group should be vaccinated with the COVID-19 vaccine made by Moderna, as well as Pfizer.
See here for information about the vaccine from the British Association for Paediatric Nephrology.
How will children access the vaccine?
Children aged 12 to 15 at increased risk of serious Covid – such as those with severe neurodisabilities, Down’s syndrome, or immunosuppression with an interval of 8 weeks between the two doses.
These children will be contacted by their doctor. In Northern Ireland, children aged 12-15 with a letter showing they are in this group can also book via the online portal
12 to 15-year-olds who live with a severely immunosuppressed person
England – people who are immunosuppressed should be written to by their GP and household contacts aged 12-15 (or their parents) can call their GP to arrange a vaccine appointment. See here for a FAQ document from NHS England.
Wales – The parent or guardian of a household contact aged 12-15 can complete the self referral form on the NHS website on their behalf.
Scotland – Please telephone the vaccination helpline on 0800 030 8013 for more information about how to book.
Northern Ireland - People aged 12-15 with a letter showing they are household contacts of an immunosuppressed person can book via the online portal
Children who are aged 16 or 17
Parental consent will not be required for young people aged 16 and 17 to receive the vaccine.
England – GPs will invite 16- and 17-year-olds for vaccination and some walk-in centres are available to this age group.
Northern Ireland - regional vaccination centres will offer walk-in Pfizer vaccines for all 16 and 17 year olds or you can book via the online portal
Wales - invites are being sent out to people in this age group and walk in clinics are available. Call your health board for more information.
Children aged 12-15 who do not fall into any of the above groups
Each UK nation is implementing the roll out of one dose of the Pfizer vaccine for this group. Parent consent will be required and much of the rollout will be done through schools. You may also which to look at country specific government announcements for more details:
Can household members of severely immunosuppressed people get the vaccine?
To provide additional protection, people aged 12 and over who are household contacts of people who are severely immunosuppressed are being invited for vaccination and will also be invited for a booster dose. The process for booking appointments differs in UK countries (see above for arrangements for 12-15 year olds).
England: the person who is immunosuppressed should be given a letter from their GP to pass on to their household members. The letter has information about how to book. See these links for Government guidance and letter to GPs.
Northern Ireland: follows the same process as England. This Government announcement confirms household contacts will be able to access the vaccine (5th paragraph of announcement).
Scotland: Please telephone the vaccination helpline on 0800 030 8013 for more information about how household contacts can book. This Government guidance lists household contacts amongst those being offered vaccination.
Wales: household contacts of a severely immunosuppressed adult should complete the self referral form on the NHS website.
Kidney Care UK/UK Kidney Association Question time webinars:
We realise that people with kidney disease will have many questions about vaccines. As well as the information here, you can also watch videos of the joint Kidney Care UK and UK Kidney Association patient information webinars (noting the content reflects knowledge and guidance available at those dates):
- Monday 30 November 2020
- Tuesday 26 January 2021
- Tuesday 9 February 2021
- Tuesday 30 March 2021
- Tuesday 29 June 2021
We will continue to update our information as we learn more.
What have the vaccine clinical trials found about how effective the vaccines are in the general population?
Clinical trial results published for the three vaccines show between 70-95% effectiveness. Ninety-five per cent efficacy means that, in the clinical trials, there were 95% fewer cases of Covid-19 in people who had the vaccine compared to the people who had the placebo (dummy treatment). The data appeared to show the Oxford/Astra Zeneca vaccine to be less effective than the other two (Pfizer-BioNTech and Moderna), but none of the people who received the vaccine for Covid-19 in the Oxford/Astra Zeneca trial became severely ill and had to go into hospital.
Data collected as the vaccine is rolled out in the general population (real world data) have also shown the vaccines have a major effect on the risk of infection, hospitalisation and death.
An online registration service is available for people who would like to be contacted about participating in a clinical trial of a vaccine.
Could ‘herd immunity’ help protect kidney patients?
Possibly. People with kidney disease may not have such a strong response to the vaccine as the general population. However, the key thing with all vaccines is not just an individual’s response, but vaccination levels across the population. When large numbers of people in the community become immune through vaccination then the virus cannot spread. This is known as herd immunity and makes it safer for everyone. This is also why people over 12 living in households with severely immunosuppressed people can now receive Covid-19 vaccinations too.
Did the vaccine trials show any difference in outcomes for people from Black, Asian and Minority Ethnic Groups?
No differences in outcomes have been found to date in Black, Asian and Minority Ethnic groups. However, although the studies were representative of the UK population, not enough people in the studies have caught Covid-19 to allow the detailed study of any particular subgroups.
Pfizer/BioNTech trials took place in the US, Europe, Turkey, South Africa and South America. Approximately 42% of global participants and 30% of U.S. participants had racially and ethnically diverse backgrounds.
AstraZeneca trials took place in the UK, Brazil and South Africa. The non-white demographic in the UK trial was 7.1%. In the Brazil trial it was 31.4% and in South Africa it was 87%
Are the vaccines effective against the new variants/mutations?
The evidence so far shows that all of the current vaccines are effective against the new variants of Covid-19. This is because the vaccines focus on the spike protein which only changes ever so slightly in each new variant. This means that the immune response the vaccine produces in your body is still effective if it encounters a new variant.
However, new data suggests that people may be less protected against the Delta variant (first emerging in India) after the first dose but better protected after the second dose, which is why the second dose was brought forward from 12 to 8 weeks for people in the first 9 priority groups.
Vaccine research is still ongoing and new vaccines will be developed including potentially for any new variants if necessary, in the same way that the flu vaccine is slightly different each year.
Are the vaccines safe? Should I be worried about how quickly the vaccines have been developed?
The vaccines will only be approved for use once they have passed stringent safety tests. As is always the case with new vaccines, we will learn more about the long-term safety of the vaccines through long-term clinical studies.
The speed of development might make people concerned, but corners have not been cut. During the development of the Covid-19 vaccines, regulators and researchers have worked in together to avoid delays. But before they can be used, the vaccines must pass all the same safety tests as for any other vaccine. The BBC has a helpful explanation of the safety checks.
Oxford University have published a short film entitled ‘How to make a vaccine in record time’.
Are there any side effects to the vaccines?
As with other vaccines, there may be mild and short lasting side effects to the Covid-19 vaccine such as having a sore arm or feeling tired for a day or two. (see MHRA safety monitoring and analysis). These can be treated with paracetamol and should wear off quickly. There is no evidence that side effects are worse for people with underlying conditions such as kidney disease or based on any medication they are taking.
The MHRA encourages people to report suspected side effects to the vaccine on their Yellow Card reporting site.
Astrazeneca/Oxford vaccine and rare blood clots
People aged under 40 with no underlying conditions will now be offered an alternative vaccine to the Oxford/AstraZeneca (AZ) vaccine where this is possible. This follows a review of data on an extremely rare blood clot with low platelet count reported after first exposure to the AZ vaccine, with a slightly higher incidence in younger age groups. As the risk of serious disease from Covid-19 is lower in people aged under 40 with no underlying health conditions, the JCVI conclude that, on balance, an alternative vaccine is preferable in this group.
The balance of risks and benefits is different in people with underlying health conditions such as kidney disease, because they are at greater risk from serious illness if they catch Covid. Therefore, this advice does not apply to people aged under (or over) 40 years who have underlying health conditions. In this group, the JCVI consider the benefits of prompt vaccination with the AZ vaccine far outweigh the risk of adverse events.
People who have had a first dose of the AZ vaccine should continue with this vaccine for their second dose, except for the very small number of people who experienced blood clots with low platelet counts from their first vaccination.
The MHRA advises that the estimated risk from these clots remains extremely rare overall. By 24 June 2021, the incidence of blood clots was 14.6 cases per million first doses given and 1.6 cases per million second doses.
Blood clots have also been reported among people with Covid-19. More than a fifth of hospitalised patients with COVID-19 have evidence of blood clots, and the presence of these almost doubles the risk of death.
Anyone who has the following symptoms four days to 4 weeks after vaccination is advised to seek prompt medical advice:
- 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
Mild flu-like symptoms, including headache, chills and fever remain one of the most common side effects of any COVID-19 vaccine. These generally appear within a few hours and resolve within a day or two.
There are no known factors which put people more at risk of this extremely rare blood clot.
Are the Covid-19 vaccines live? Could the vaccines cause rejection of my transplant?
None of the Covid-19 vaccines currently in development are traditional “live” vaccines. The Oxford/Astra Zeneca vaccine uses an adenovirus, but its genes have been edited so it cannot replicate and cause infection.
There is a theoretical concern with all vaccines that they might damage transplanted kidneys or cause rejection because they stimulate the immune system. This has never been proven to happen with other vaccines, which all work by stimulating the immune system. The benefits of reducing the known risk of Covid-19 for kidney patients outweigh concerns about a theoretical risk and your kidney team recommends that you consider having a vaccination.
Many thousands of people with solid organ transplants, of which many are kidney transplants as the most common type of organ transplant, have received the Covid-19 vaccine. This has not shown any adverse effect on kidney function or complications, for example rejection. A small US study of 187 people with kidney transplants, carried out a week after they received the Pfizer or Moderna vaccine, found there were no cases of acute rejection, allergic reactions or neurological diagnoses (Guillain-Barre syndrome, Bell’s palsy or neuropathy).
How long should I wait after a transplant before receiving the vaccine?
It is recommended to wait until your immunosuppressant is at maintenance level. This may be up to twelve weeks after your transplant when your medicines are at a baseline. Different people may be vaccinated at different times depending on their clinical circumstances and it best to discuss with your doctor. There is no evidence that the vaccines will lead to a loss of transplant.
Do I need to change any of my medications such as immunosuppressants when I receive the vaccine? Will the vaccines interact with any other medicines?
You should not change or stop any of your medications without consultation with your healthcare team 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.
What are the dosage intervals for the vaccines?
The Pfizer, AstraZeneca and Moderna vaccines both require two doses initially. The initial dosing intervals of between 3 and 4 weeks was extended to between 4 and 12 weeks so that more people could get their first dose in a shorter period of time. In May 2021, the usual timing of the 2nd dose was brought forward from 12 to 8 weeks after the 1st, because of concern about the Delta variant.
Currently we cannot be sure whether a later or earlier second dose works better for kidney patients. Ongoing research will inform decisions about best timing for the second dose. Therefore, it is recommended that until the science is clearer, kidney patients (including transplant patients) should have their second dose (and third dose) when scheduled through current systems.
We do anticipate further changes to what is said here as our understanding evolves and it remains vital to have your second dose of the Covid-19 vaccine.
Is it recommended some patients receive the second dose within 3 or 4 weeks rather than 12 or 8?
Public Health England published guidance on the vaccination of people who are about to start taking immunosuppressants which may affect a small group of kidney patients. It advises that ideally both doses should ideally be given before the immunosuppressant treatment starts. This is because the immune system may respond better to a vaccine given before immunosuppressant treatment starts.
This does not affect those who are already taking immunosuppressants, such as people with a transplant. If you are already taking immunosuppressants the timing of your second dose will normally be the same as for the general population (between 4 and 12 weeks after the first dose).
Should I receive the same vaccine for all doses?
Whichever brand of Covid-19 vaccine is given at the first injection, the same brand of Covid-19 Vaccine (and not another vaccine against Covid-19) should be given for the second injection. However, a research study has begun looking at whether using a different vaccine for the second dose works as well as using the same vaccine for both doses.
It is recommended that people receiving a third dose because they are severely immunosuppressed should have the Pfizer/BioNTech or Moderna vaccine regardless of which vaccine they had for their 1st and 2nd dose, as a number of studies have reported an increased immune response in some immunosuppressed people after a third dose of an mRNA vaccine. For those aged 12 to 17, the Pfizer-BioNTech vaccine is preferred.
For the wider booster programme people will be offered either a full dose of the Pfizer/BioNTech vaccine or a half dose of the Moderna vaccine, following scientific evidence showing that both provide a strong booster response. This will be regardless of which vaccine the individual previously had. Where neither can be offered, for example for those who have an allergy to either vaccine, the JCVI advise that the Oxford/AstraZeneca vaccine can be used for those who received this vaccine for their first and second doses as it is safe, effective and has already saved thousands of lives in the UK and around the world.
What safety measures should I be taking once I have received the vaccine and the vaccine programme is rolled out more widely?
The vaccine is a vital step but it is not an immediate way out of the restrictions. Clinically Extremely Vulnerable people are advised to continue following the CEV guidance in place in their area after both their first, second and third dose of vaccination.
A gradual return to usual activities will probably be best and you must follow government guidance. Vaccinated people may still be infectious, although much less so than unvaccinated people (see Public Health England research for more details).
As more is learnt about how well different groups of kidney patients respond to the vaccine, you may like to speak to your doctor about your likely level of protection and the measures you may choose to take to reduce your risk from Covid. See advice from our recent webinar about measures to keep yourself safe after vaccination.
Should I take the vaccine if I am pregnant, trying to become pregnant or breastfeeding?
The Joint Committee on Vaccination and Immunisation (JCVI) updated their guidance on 16 April and advise that women who are pregnant should be offered vaccination at the same time as non-pregnant women, based on their age and clinical vulnerability. This follows a review of the evidence which showed no evidence of safety concerns relating to the use of the vaccines during pregnancy. There are no safety concerns about using any of the vaccines in pregnancy, but most of the available data relates to the Pfizer and Moderna vaccines, therefore JCVI recommends these are offered to pregnancy women. However, people who have already had a first dose of the AstraZeneca should continue with this vaccine.
There is no known risk with giving inactivated virus or bacterial vaccines or toxoids during pregnancy or whilst breast-feeding. There also is no evidence that any of the UK vaccines can affect fertility. The theory that immunity to the spike protein could lead to fertility problems is not supported by any evidence. It is safe to have the vaccine if you are trying to get pregnant or are breastfeeding. In response to misinformation about vaccination and fertility, the Royal College of Obstetricians and Gynaecologists with the Royal College of Midwives has spoken out to explain this. Women should speak to their clinicians if they have any concerns relating to the Covid-19 vaccines.
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.
We are hearing from you about scammers in relation to your vaccine appointments. Remember, the vaccine is only available on the NHS and is free of charge. If you receive an email, text message or phone call pretending to be from the NHS and you are asked to provide financial details, this is a scam. You can get more information and report scams to Action Fraud.
Kidney Care UK and UK Kidney Association Covid-19 Question Time patient information webinars
Since August 2020 the charity has run a series of webinars – we encourage you to review them, see the summary reports and share them with others, should you have further questions. The information from each webinar reflects knowledge and guidance at that time. The most recent sessions have included vaccination in some detail.
- Covid-19 and Dialysis - 19 August 2020. Panel members Dr Andrew Frankel from Imperial Healthcare in Hammersmith, and Nurse Consultant Karen Jenkins from Kent and Canterbury Hospital, supported by Dr Rebecca Suckling from Epsom and St Helier Hospital answering the questions on the chat.
- Covid-19 and Transplantation – 28 September 2020, with panel members transplant surgeon, Dr Rajesh Sivaprakasam from Barts Health NHS Trust and Lisa Burnapp, clinical lead for living donation at NHS Blood & Transplant, with Dr Rebecca Suckling from Epsom and St Helier Hospital answering the questions on the chat
- Covid-19 - Treatment and vaccination 30 November 2020. This event added Professor Richard Haynes from Oxford MRC as we addressed questions about treatment and the Recovery Trial. Drs Andrew Frankel and Rebecca Suckling again joined us on the panel. This webinar was 2 days before the Pfizer vaccine was approved for use by the MHRA and so was very timely, very well-attended and Dr Suckling’s fingers flew to answer over 100 questions during the event
- Covid-19 and Vaccination - 29 January 2021. As vaccination progressed more and more patients were asking questions so this webinar attracted a record number in advance (over 100) and we closed the bookings at 568 as the number of attendees permitted on the Zoom platform is 500. The panel included Dr Suckling and Dr Fiona Harris, both from St Helier hospital who answered about 150 questions live. Speakers were D Frankel, Professor Haynes and Dr Joyce Popoola from St Georges Hospital in London.
- Covid-19, vaccination and the BAME Community - 9 February 2021, Kidney Care UK, the Renal Association and the British Renal Society, supported by Gift of Living Donation (GOLD) and the African Caribbean Leukaemia Trust (ACLT), hosted a free Zoom webinar for patients, carers and health professionals on the topic of the Covid-19 vaccination and chronic kidney disease. The specific focus of this session was on key questions asked by people from the BAME community – it has been published with clips from experts and faith leaders. We encourage you to view and share them.
- Covid-19 and lifting lockdown – 30 March 2021. This webinar answered the many questions kidney patients have, as the vaccine rollout continues and shielding is paused. On this occasion, because of a technical glitch we do not have the recording of the event available and so have provided a slightly longer report.
- Covid-19 – Vaccination update – 29 June 2021. This webinar discussed developments in our knowledge about the Covid vaccines and how people with suppressed immune systems are responding, as well as a discussion about how to return to normal activities and cope with anxiety as restrictions ease.
I am on dialysis - am I at risk?
People on dialysis are at increased risk of severe illness from Covid-19 and are included in the clinically extremely vulnerable group. Guidance has been published to provide renal staff with practical advice to minimise the risk of Covid-19 transmission within both in-centre and satellite adult haemodialysis units.
Personal protective equipment for people on dialysis
The UK Kidney Association recommends that, because people on dialysis are in this extremely vulnerable group and are also often with others when travelling and receiving treatment, they should be provided with fluid-resistant surgical face masks. These are for use when travelling to and from dialysis, throughout the dialysis treatment, and in waiting and assessment areas used before or after treatment. It is important to wear these masks wherever possible, for the protection of the patient, staff and other people using the dialysis unit. In addition, Government guidance states face coverings are mandatory for everyone attending a hospital in England as an outpatient or visitor.
Government guidance states that all staff treating and caring for people on dialysis (as a group identified as extremely vulnerable to Covid-19) should as a minimum, wear single use disposable plastic aprons, gloves and surgical mask for the protection of the patient. Surgical masks are mandatory for all NHS staff in England, in all areas and at all times.
Can I eat and drink when I have a face mask on during dialysis?
The UK Kidney Association, with the Renal Nutrition Group, have published guidance on eating and drinking during hospital or satellite unit based dialysis . This confirms that is should be the patient’s decision whether to eat or drink, once they understand how to do so safely. It highlights that, if you decide to eat or drink, you can take off your mask but must immediately put it back on after eating or drinking. You should use hand sanitizer before you take your mask off and before putting it back on. It is particularly important that when you take your mask off you ensure that you keep a two metre distance between you and all other people on the unit. This includes other patients on dialysis and your dialysis nurses. This also applies in units run by Fresenius.
How will I get to dialysis?
You will still get there in your normal way, unless advised otherwise.
Measures are in place to make sure transport services are provided in a way that protects patients, including patients with Covid-19 symptoms being transported individually and careful cleaning of vehicles.
In Wales, Non-Emergency Patient Transport Service (NEPTS) will continue with appropriate safety measures and the transport re-imbursement scheme is available for all patients who were in receipt of transport to attend unit haemodialysis from NEPTS. If you need more information, please don’t hesitate to ask your nursing team for more information.
Home dialysis supplies
Guidance for drivers states patients will be contacted and asked about how they would like their delivery to be made. Supplies will be taken to the usual location in a patient’s home whenever this is necessary. Drivers will receive training in the guidelines and also how to reduce risk of infection, by using gloves and hand gel and keeping a two metre distance between the driver, patient and any household members. All direct access deliveries to garages or sheds will remain unaffected.
Baxter Healthcare have provided Covid-19 patient information for those receiving home dialysis supplies from them.
Decisions about the provision of care
Some people may have been feeling anxious following media reports about how decisions are made relating to provision of treatment. The Government have issued a letter to reassure people that decisions about care and treatment will always be made on an individual basis. They emphasise that blanket policies are inappropriate whether due to medical condition, disability, or age. This is particularly important in regard to ‘do not attempt cardiopulmonary resuscitation’ (DNACPR) orders, which should only ever be made on an individual basis and in consultation with the individual or their family.
The UK Kidney Association (UKKA) has also published guidance making it clear that having kidney failure and Covid-19 should not in itself be a barrier to access to intensive treatment unit (ITU) and ventilation. There is no evidence to support this decision and the RA note that survival of people with kidney failure, whether on dialysis or with a transplant in ITU is similar to the general population.
Guy’s hospital have produced some useful videos which provide more information about Do not attempt resuscitation orders and decisions about treatment.
I am looking after my relative/I am a carer - what should I do?
If you do not live with the person you care for, you should still visit them to provide essential care, but be sure to carefully follow advice on good hygiene.
- Wash your hands on arrival and often, using soap and water for at least 20 seconds or use hand sanitiser.
- Cover your mouth and nose with a tissue or your sleeve (not your hands) when you cough or sneeze.
- Put used tissues in the bin immediately and wash your hands afterwards.
- Do not visit if you are unwell and make alternative arrangements for their care.
- Provide information on who they should call if they feel unwell, how to use NHS111 online coronavirus service and leave the number for NHS 111 prominently displayed.
- Find out about different sources of support that could be used and access further advice such as that on creating a contingency plan from Carers UK
- Look after your own well-being and physical health during this time. Further information on this is available at the Carers UK website which has detailed information and support for carers of vulnerable people.
- The Government have published Guidance for those who provide unpaid care to friends or family.
I have professional care staff coming into my home
Professional health and care staff have very clear guidance on how to avoid spreading the Covid-19 infection and protect their clients as well as their own families. It is vital they stringently follow the hygiene rules and you should not be afraid to insist that they do so. If you have any issues or concerns raise them with the care worker or their employer. Contact details for your Care Provider will be located within your individual care plan folder. Government guidance for care providers, which while written for registered providers, social care staff, local authorities and commissioners, gives greater information on Covid-19 and Home Care in England. Similar information is also available for Scotland, Wales and Northern Ireland.
What about children with kidney disease?
We know that children and young people tend to do better than adults in terms of length of illness and severity of symptoms when Covid-19 is diagnosed. Most children who have contracted the virus and been completely asymptomatic (had no symptoms at all). Like other similar winter viruses however, there have been cases of children requiring higher levels of care with Covid-19.
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. Letters will be sent out to families with more information and 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. 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 clinically extremely vulnerable (CEV). 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.
See the section on Going to School for more information about attending school during the Covid-19 outbreak.
The Royal College for Paediatric and Child Health has produced lots of useful advice for families in all 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.
Recommendations for women with kidney disease who are currently pregnant, or considering pregnancy, during the Covid-19 pandemic
We recommend you read the advice about pregnancy and Covid-19 available from the Royal College of Obstetricians and Gynaecologists.
There is limited information on the risk from Covid-19 in kidney patients who are pregnant and interactions between kidney disease, pregnancy and coronavirus have not been excluded.
Careful monitoring during pregnancy remains important for women with kidney disease. You may be advised by your local team that most appointments can be conducted by telephone. If you have concerns about your pregnancy, contact your antenatal clinic assessment team for advice.
Women who are considering a pregnancy
Women with kidney disease who are considering pregnancy should take note of the uncertain but possible increased risks to their and their baby’s health associated with Covid-19.
Please see our section on vaccines for information about the Covid-19 vaccine and pregnancy.
Regular outpatient appointments may need to be changed or postponed. Your appointments may need to be carried out over the phone or online and many of you now receive your immunosuppressants via home delivery.
You may have seen some (inaccurate) reports on social media in the last few days suggesting people who are unvaccinated against Covid-19 who are on the waiting list will not be eligible for a transplant. You can receive a transplant whether you have had the Covid-19 vaccination or not, as long as you are eligible. Being on the active waiting-list for a transplant is dependent, not on vaccination status, but a range of clinical factors.
NHS Blood and Transplant have provided this clear advice:
“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.
Due to the reduced number of Covid infections all centres are now open for living donations, although restrictions may be in place in Belfast. The current list of centres and restrictions is here.
Everyone going into hospital for planned surgery will need to self-isolate for 14 days before admission. Your hospital will provide further details.
The latest NHS Blood and Transplant (NHSBT) bulletin for clinical professionals is here. NHSBT are working hard to use what they learnt in the first wave of COVID-19 about supporting the continuation of safe transplantation wherever possible.
People on the transplant waiting list
We are encouraged to report that all transplant units are open across the UK (some restrictions in place in Belfast) and transplant referrals are beginning to return to normal levels. You can find the latest information around centres here. Your unit should let you know about the plan for you and please contact them if you have any queries. NICE (the National Institute for Health and Social care Excellence) has issued advice for clinical teams caring for people waiting for or living with transplants and people who have donated a kidney (live donors). Kidney Care UK contributed to this advice. For deceased donation, all organ donors will be assessed in line with advice from NHSBT to ensure the procedure is safe. The latest report on transplant activity was recently published, and you can see the impact which Covid had on the transplant system.
Barts Healthcare have published a video in which a couple discuss their experience of a transplant operation taking place during the COVID outbreak and what was put in place to keep them safe.
I am a living kidney donor – am I at high risk?
Being a living kidney donor does not increase your risk of having more serious illness with Covid-19. This is because ability to fight infection is not affected by kidney donation itself.
Due to reports of incorrect information circulating regarding additional risks from Covid-19 to healthy living donors with a single kidney, NHS Blood and Transplant (NHSBT) have published a statement (please note this is written for clinicians) again confirming that this group do not need to shield as they are at no greater risk than anyone else of contracting COVID- 19 or the symptoms associated with it. If someone has other health issues that classify them as high risk, they may be in the clinically extremely vulnerable group.
My doctor has advised that my vasculitis/lupus/glomerulonephritis/nephrotic syndrome is flaring/much worse and I need to start a new course of treatment – should I be shielding?
At present, for people who require 'induction' immunosuppression for new or flaring vasculitis, lupus or nephrotic syndrome, our knowledge about the additional risks of becoming severely unwell were they to catch coronavirus is limited. Some research has suggested that people taking higher doses of steroids (e.g. more than 10 to 15 mg/day prednisolone or equivalent) may have a poorer outcome following Covid-19 infection. We would recommend a discussion between you and your clinician regarding the option of treating your condition with lower doses of (or no) steroids. Where this is not possible, we recommend that you, those who you live, and your employer follow the advice for those at highest risk.
I have had my vasculitis/lupus/autoimmune kidney disease for some time and am on stable treatment and my doctor says I’m in remission – am I safe to go back to work?
The majority of people with vasculitis, lupus, or autoimmune kidney disease (glomerulonephritis) who are in remission and are taking 10mg or less of prednisolone a day (or equivalent) are considered to be at lower risk of a poor outcome following Covid-19 infection. Exceptions to this would be those aged over 70 years, those who are clinically extremely vulnerable or advised to shield for other reasons, and those aged 60 to 69 or with two or more additional risk factors (male, non-white ethnicity, diabetes or a body mass index (BMI) >35 kg/m2).
I only have one kidney – am I at risk?
Having one kidney does not put you at increased risk on its own. If your kidney function is normal you will not be at increased risk. For some people who have reduced kidney function (chronic kidney disease) your risk is increased due to the chronic kidney disease rather than having one kidney. If your kidney was removed for health reasons, it is possible that the health reasons leading to the kidney removal will increase your risk and you should follow appropriate government guidance.
I have Polycystic Kidney Disease (PKD) Am I at risk?
If you have PKD, whether or not you’re at increased risk of getting seriously unwell from Covid-19 depends on your kidney function. There is nothing to suggest that people with PKD and normal or only mildly reduced kidney function are at higher risk of getting seriously unwell from Covid-19 than the general population. The PKD charity has some further information on their website
I have high blood pressure, am I at risk?
Having high blood pressure (hypertension) on its own does not make you at a high risk of serious complications if you get infected with Covid-19. The national and international societies representing specialists in high blood pressure have said there is no evidence that more people with high blood pressure have severe disease with Covid-19. If any changes become apparent, this advice will be updated as advised by our medical colleagues. You should continue to take your medication as prescribed. It may be that you have other underlying conditions such as chronic kidney disease or diabetes which may put you at high risk. If this is the case you should follow the government advice.
Will taking my immunosuppressive medications put me at higher risk from COVID-19?
Unless you are advised otherwise, it is very important that you continue to take all your immunosuppressive drugs because the health risks associated with a flare up of your disease are likely to be greater than the risks associated with COVID-19. Indeed, keeping your disease inactive reduces the need for increased doses /stronger drugs needed for acute flares.
Should I be taking vitamin D supplements to help prevent Covid-19?
The NHS service for supplying free vitamin D to people at high risk from Covid has now closed.
Vitamin D is good for you and can help support your immune system and possibly help resist infection with Covid. So it is important to have sufficient vitamin D. You may already be prescribed supplements, for example Adcal, and you should check with your doctor before taking any additional supplements.
Some transplant units are more hesitant about prescribing vitamin D to people in the first year after a kidney transplant, so if this is the case do check with your kidney team and you may be advised not to take vitamin D supplements.
It is important to note that there is active vitamin D, which is often prescribed by kidney units in medicines like Alfacalcidol and Calcitriol. It is subtly different from natural vitamin D. You can be low in natural vitamin D even if you are taking active vitamin D. So do check with your kidney doctor about any natural vitamin D supplement you may already be taking and what you should do to make sure your levels are correct.
The Government have published more information about taking vitamin D supplements safely, which reiterates that people with kidney disease should talk to their doctor before taking it.
I have high blood pressure, should I stop or change my blood pressure medications?
There have been some reports about blood pressure medications. At the present time there is no evidence that any particular group of blood pressure tablets, including angiotensin converting enzyme inhibitors or angiotensin receptor blockers, affect the risk of getting infections or the severity of those infections. It is important to continue all your normal medications including your blood pressure medications and not to stop any of your medication without discussing it with your doctor.
Can I take ibuprofen or other non-steroidal anti-inflammatory drugs (sometimes known as NSAIDs)?
Doctors recommend that people with chronic kidney disease or a kidney transplant always avoid taking drugs like ibuprofen for pain or high fever and this remains the case. Please use paracetamol to treat high temperatures and for your pain relief.
Antibiotics or any other new medication you are prescribed
Transplant immunosuppression medicines such as tacrolimus, ciclosporin or sirolimus can interact with other medicines. It is important that when any new medication is started you tell the prescriber that you are taking one of these immunosuppressants.
Other medicines which can cause problems with tacrolimus, ciclosporin or sirolimus include:-
- Some antifungal and antibiotic medications - for example fluconazole and clarithromycin.
During the period of Covid-19 you may have a chest infection where antibiotics are required. If clarithromycin is used you may need a dose reduction in tacrolimus (or ciclosporin or sirolimus) but do not change anything unless asked to by your renal team.
If you are self-isolating or shielding, someone else needs to collect your medicines from the pharmacy or ask if they have a local delivery service. Also do keep an eye on your supplies so you order repeat prescriptions in good time. Don’t wait to ring them up to ask for a repeat prescription if you are running low.
Research and how data on kidney patients is being used to support your care
The UK Renal Registry (UKRR) is using data from renal units and hospitals, within strict confidentiality rules, to learn more about how Covid-19 is affecting kidney patients. Please be assured that this information will be very widely shared and underpins efforts by staff and patients to continue to stringently adopt all the measures we know can keep people safe from infection with Covid-19.
Regular surveillance reports are published by the UK Kidney Association.
NHS Blood and Transplant also publish weekly data on rates of Covid-19 in transplant recipients.
If you have questions about how the UKRR are using information on patients please contact them directly via the UK Renal Registry website.
NHSBT is doing a range of research on Covid-19, including on blood plasma and using blood samples to estimate virus spread, which is regularly updated
Kidney Care UK has joined researchers at King’s College London, as well as other patient charities, to raise awareness of a research project in which people are asked to report on their health on a daily basis via a smartphone app. This will allow the researchers to track any symptoms of Covid-19 that people are experiencing and understand what some of the early symptoms could be. They would particularly like people aged over 70 to join in, as not many from this age group as joined the project so far. The developers have also added a function to the app so that you can also report on other members of your household who do not have access to a smartphone. More information about the project is available from the research team.
Opportunities for research participation are listed on our Research Opportunities page.
The autumn flu jab campaign is starting. All people with kidney disease at stage 3 and above are offered a flu jab every winter. NHS Choices explains more .
This year there is an expanded group who are eligible.
During the 2021 to 2022 season, the flu jab will be available to:
- all children aged 2 and 3 on 31 August 2021
- all children in primary school and all children in school years 7 to 11 in secondary school
- those aged 6 months to under 50 years in clinical risk groups
- pregnant women
- those aged 50 years and over
- unpaid carers
- close contacts of immunocompromised individuals
- frontline health and adult social care staff
Kidney Care UK supports this campaign every year and recommends that you do have a flu jab - it’s really important for people with kidney disease to get protected. When Covid-19 vaccinations were first rolled out, it was recommended that there should be 7 days between the flu jab and the covid jab. However, this guidance has changed and you can have them at the same time, if you wish and your practice offers this.
The MHRA have confirmed that this is safe, following the ComFluCOV trial showing that giving the flu and Covid-19 vaccines does not affect the immune response to either vaccine. Therefore, the two vaccines may be given at the same time where it is practical.
Employment and benefits
Please see our recent blog for more hints and advice about returning to work.
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 they are obliged to carry out and discuss any steps that take into account your higher risk from Covid.
- Speak to your kidney doctor, they will be able to provide a letter for your employer about your individual risk or advise on additional precautions.
- Consider whether there are any alternatives to public transport (car share with one other person) or whether you can travel at quieter times (or see Access to Work)
- Ask your employer/HR dept to run a session on supporting vulnerable colleagues, so all colleagues are aware of appropriate action to take.
- Use social media/friends/other groups to find out what people in similar situations are doing.
- Speak to your union/ACAS about any worries.
- Explore whether the Access to Work fund could fund adjustments required to allow a safe return to work (e.g. special equipment or safe travel to and from work).
- There is a scheme for accessing free lateral flow tests for workplaces in England, Northern Ireland, Scotland and Wales.
The UK Kidney Association have published some information about understanding risk, with input from Kidney Care UK and others. This can be found here.
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-19 vaccines may not work as well for these individuals. Those who are concerned that they may not be fully protected by the Covid-19 vaccine may like to download a copy of the open letter (which has been updated in light of changes in England from 19 July) written by the charity coalition and share directly with their employer.
Current government guidance
Advice that clinically extremely vulnerable (CEV) people should shield has now paused across the UK. In England, a slow return to the workplace is expected following the easing of restrictions on 19 July. In other parts of the UK, people are advised to work from home if they can, but may go into work if it is safe to do so and they can travel in a safe way.
The Government guidance for each UK nation explains how to ensure a workplace is COVID-safe. It covers different workplaces (e.g. factory, office) to help an employer in its risk assessment responsibilities. The Health and Safety Executive have provided practical information on how to make work and the workplace safe.
In Wales the Coronavirus Regulations impose a legal requirement on workplaces to take all reasonable measures to ensure a 2 metre distance is maintained between persons on their premises. Guidance has been produced to assist people in understanding what ‘taking all reasonable measures’ means and what to do if it is not possible to maintain a distance of 2 metres in certain circumstances.
After restrictions ease in England on 19 July
After restrictions ease on 19 July, the government is no longer asking people to work from home if they can but is expecting a slow and gradual return to workplaces. More information is here. Workplaces must still follow the updated working safely guidance and have a legal duty to protect their employees and carry out risk assessments, including managing the risk of Covid-19. Each sector’s guidance reminds employers to give extra consideration to employees at higher risk from Covid and we advise reading the working safely guidance that applies to your sector of employment. Kidney Care UK is continuing to campaign for employment protections for people at higher risk from Covid, including the right to continue working from home or to travel at different times to avoid peak hour public transport.
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-19 is minimised.
Employers' legal duties to manage risk
Employers have a legal duty to manage risks to those affected by their business. The Government state “The way to do this is to carry out a health and safety risk assessment, including the risk of COVID-19, and to take reasonable steps to mitigate the risks you identify. Working Safely guidance sets out a range of mitigations employers should consider including:
- cleaning surfaces that people touch regularly;
- identifying poorly-ventilated areas in the venue and taking steps to improve air flow;
- ensuring that staff and customers who are unwell do not attend the workplace or venue;
- communicating to staff and customers the measures you have put in place”
The risk assessment must consider the risk to workers who are particularly vulnerable and put controls in place to manage that risk, for example allowing them to continue working from home or giving them tasks where they can social distance. You should ask to see the results of this risk assessment and discuss the measures put in place with your employer.
People with disabilities who need adjustments to help them continue working during the Covid-19 pandemic may be eligible for the Government’s Access to Work scheme. This can cover extra costs such as:
- help with travel costs to and from work if it isn’t safe for you to use public transport
- mental health support from the Mental Health Support Service, if you’re anxious about returning to work
- a grant for special equipment if your homeworking.
Grants can be fast-tracked if you’re in the clinically extremely vulnerable group. You can apply here.
The furloughed worker scheme ended on 30 September 2021.
More information about risk assessments
The Scottish government has produced an occupational risk assessment tool for you to go through with your employer before you return to work. The Welsh Government have also produced a workforce risk assessment tool. The Northern Ireland Health and Safety Executive has produced a workplace risk assessment template.
More detailed support with risk assessment is available from the University of Glasgow and The Society of Occupational Medicine COVID-19 return to work guidelines which, for the first time, take account of community prevalence, vaccination status and previous COVID-19 infection in the risk assessment. The guide describes the multiple factors which should be considered in the COVID-19 return to work risk assessment. These include community infection levels, individual vulnerability (Covid-age), workplace / commute transmission risk, workers' concerns / expectations and more recently, vaccination and previous COVID-19 infection. The guide includes a stepwise approach to inform decisions and facilitate safe return to work. The guidelines are intended for workers, employers and health practitioners. Unfortunately, only 50% of UK workers have access to occupational health, so for many workers their risk assessment will have to be done by their GP, employer or themselves and the guidance will help all parties understand their risks and the appropriate work-related control measures.
The guide is based on the ALAMA tool which can estimate your ‘Covid age’ to predict your vulnerability to Covid. We recommend you read the guidance first, before using the Covid-age tool. These tools can help you decide how safe it might be for you to return to the workplace and we recommend you follow these three steps to help you make a decision:
- Calculate your ‘Covid age’
- Take a look at the above mentioned return to work guide and
- Look at the current level of Covid in your area
Following these steps should give you an idea of your likely actual level of risk, depending on the job you do. As an example if you have an egfr between 30-60, high blood pressure and a kidney transplant this gives you a high Covid age and makes you vulnerable – but if the infection level in your area is low and you work in a small office with very little contact with others and you have had both your vaccination doses, this drops your risk right down.
The UK Kidney Association have published a template letter, for use after discussion with your kidney doctors, which can be shown to employers to help them understand their employee’s individual risk and the action that could be taken at the workplace to reduce that risk. Patients can ask their kidney doctors to complete the template letters with information about their individual risk, using information from the risk grid.
Where can I go if I am concerned about my health and safety at work?
The Government published guidance for Clinically Extremely Vulnerable people, as part of the easing of restrictions in England from 19 July. The advice about what do if you have concerns about working safely applies to everyone, regardless of their health status:
“If you have concerns about your health and safety at work then you can raise them with your workplace union, the Health and Safety Executive (HSE) or your local authority. Where employers are not managing the risk of COVID-19, HSE and local authorities will take action which can range from the provision of specific advice, issuing enforcement notices, stopping certain work practices until they are made safe and, where businesses fail to comply with enforcement notices, this could lead to prosecution.
The existing employment rights framework provides protections against discrimination, unfair dismissal and detriment. Specific guidance has been published for employers and workers on work absences due to coronavirus (COVID-19).
Citizens Advice also has information about your rights at work and how to solve problems in the workplace. If you have concerns you can also get advice on your specific situation and your employment rights by visiting the Acas website or calling the Acas helpline on 0300 123 1100.”
If you have any issues you may also 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. Kidney Care UK have this general guidance on employment rights.
ACAS (The Advisory, Conciliation and Arbitration Service) has advice for employees and employers about working safely during the Covid-19 outbreak and has advice about dealing with any workplace problems. They have a lot of information on their website or their helpline is available on 0300 123 1100 (8am – 6pm)
People with disabilities who need adjustments to help them continue working during the Covid-19 pandemic may be eligible for the Government’s Access to Work scheme. This can cover extra costs such as:
- help with travel costs to and from work if it isn’t safe for you to use public transport
- mental health support from the Mental Health Support Service, if you’re anxious about returning to work
- a grant for special equipment if your homeworking.
Grants can be fast-tracked if you’re in the clinically extremely vulnerable group. You can apply here.
The Department of Work and Pensions (DWP) have made some changes to the way that the benefits system will operate. Information and advice can be found on the Government website. You can also ask to be referred to a Renal Social Worker if you have questions about income support and benefits.
If you are prevented from working due to Covid-19 and are not eligible to receive sick pay, you can apply for Universal Credit and/or New Style Employment and Support Allowance. Changes are being made to make it easier for those unable to work due to Covid-19 to make a claim.
If you are suffering from coronavirus or are required to stay at home and want to apply for ESA, the usual 7 waiting days for new claimants will not apply. ESA will be payable from day one.
You will be able to apply for Universal Credit and receive up to a month’s advance upfront without physically attending a jobcentre.
If you are considering making a claim for Universal Credit because of a change in your circumstances (e.g. reduced working hours) it is important to consider how this will affect any other benefits you are currently entitled to. Making a successful claim for Universal Credit will immediately end any current legacy benefits such as Working and Child Tax Credits, Income Related ESA, Income Based JSA, Income Support and Housing Benefit (Child Benefit and Council Tax Reduction sit outside of UC) and you will be moved onto Universal Credit. This may make a household worse off and protection for the amount of benefit you receive will not be available. It is very important that you carry out a Better Off calculation on a calculator such as Turn2Us Benefits Calculator and seek further advice if you are unsure.
Please see Government guidance for more detail and to make a claim.
For benefits and employment rights information for Scotland: Citizens Advice Scotland.
For benefits and employment information for Northern Ireland: Advice NI
Guidance – Direct Payments
Advice has been published for people who buy care and support through a direct payment, as well as local authorities, clinical commissioning groups and those who provide care and support.
Statutory Sick Pay
Statutory Sick Pay (SSP) is available for those diagnosed with Covid-19 and those staying at home in line with Government advice even if they are not infected. This includes people who are self-isolating because they have been contacted through the Contact Tracing system after being in contact with someone who has tested positive. Please check the Government website for more details on claiming Statutory Sick Pay due to Covid-19.
People who have tested positive for the virus or who have been told to self-isolate by NHS Test and Trace will be required by law to self-isolate, and a payment of £500 is available for those on lower incomes who cannot work from home and have lost income as a result. You should contact your local council for more information about how to apply. There are fines for breaching the rules or for forcing someone else to breach self-isolation. The Welsh government has announced that the self-isolation payment will now be £750 and that the scheme has been extended until March 2022.
The Self-Employment Income Support Scheme grant extension ended on 30 September 2021.
Support with finances
The Covid-19 outbreak will have financial implications for many people. There is advice about what you may be entitled to and action you can take, for example finding out about mortgage holidays, at the Government backed Money Advice Service Coronavirus pages. This includes information about mortgage holidays offered by many banks and building societies as well as budgeting tips.
All UK domestic energy suppliers have signed up to an agreement to help people during these challenging times. The measures mean people on prepayment meters will have a range of options to ensure continuity of supply even if they cannot add credit, and people on credit meters (paying for energy used) will be offered support and will not be disconnected.
Travel for people on dialysis – dialysis away from your own unit. New guidance on dialysis away from base (DAFB) in the UK has been published to support kidney units to safely admit visiting dialysis patients, now Covid restrictions are easing. Kidney Care UK has contributed to this work, which is led by the 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 as patients are vulnerable to COVID-19 infection and infections have occurred at dialysis units. This guidance only applies if shielding or local lockdown is not in place in base or destination units.
In terms of international travel, it might be some time before mass international travel is up and running again. Government rules regarding permission to travel as well as quarantining are in place here in UK as well as in the country of destination. See here for Government guidance on travelling abroad. It may also be helpful to speak to your doctor about the risk from Covid in the country you are thinking of travelling to.
- See here for Government guidance on travelling abroad.(England),
- Coronavirus (COVID-19): travel advice (Northern Ireland)
- Coronavirus (COVID-19): international travel and managed isolation (quarantine) (Scotland)
- Travel: coronavirus (Wales)
Managing anxiety and fear and staying safe online
It is very understandable that many of you are expressing anxiety over the Coronavirus (Covid-19). Renal patients are duly concerned regarding this disease and the potential effects on those with health vulnerabilities.
Support for kidney patients sadly varies immensely across the United Kingdom. At present it is almost a postcode lottery as to whether a patient can access free mental health support via either Primary or Secondary care.
As a starting point, we would advise that all patients contact their renal team to ask if their own Hospital has access to either a renal psychologist or renal counsellor. If not, there may be mental health services that are available within the Hospital Trust that the renal team can refer the patient to. If this support is not available, then please contact your own GP surgery to ask if your own Doctor can refer you to local Primary care mental health services.
Anxiety regarding easing of restrictions and returning to previous activities
It is understandable that many kidney patients are feeling anxious about the easing of restrictions and rejoining society, whilst others may be looking forward to it. At our recent webinar, our clinical colleagues reminded people who are apprehensive that they should give themselves permission to feel a bit anxious. Meeting friends and family and resuming activities is a very positive thing to do, but no-one could be expected to forget the very difficult time that they have been through over the last 16 months, so people should go at their own pace.
People feeling worried can choose to return to normality gradually and slowly, whilst maintaining the measures we know can minimise risk of infection. Planning trips out and social occasions in advance, to avoid high risk environments and follow risk reducing measures, can help people feel more prepared and comfortable with what they are doing. You may find it helpful to look at the summary of advice given about keeping safe while getting back to normal life from our recent Covid-19 webinar.
You may also wish to look at the Every Mind Matters website. This has advice about coping with anxiety as restrictions ease. Further information and support can also be found at:
- We have a page with some tips on managing your anxiety
- We also have a page on mindfulness colouring
- NHS Grampian have produced Tips on how to cope if you are worried about Coronavirus and in isolation
- Let’s Talk Loneliness is part of a government campaign and has advice and links to help people who are feeling lonely.
- Hub of Hope has local sources of mental health support.
- Salford University have produced information to help people stay safe online during this outbreak. This includes spotting and avoiding scams and managing the amount and type of information you are accessing online.
- Which has also produced helpful information on avoiding scams during the COVID-19 outbreak.