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

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

Contents of this page:-

Recent updates

The Joint Committee on Vaccination and Immunisation (JCVI) have updated their guidance and advise that women who are pregnant should be offered vaccination at the same time as non-pregnant women. This follows a review of the evidence which showed no evidence of safety concerns.
Adults aged over 16 living with immune-suppressed adults in Wales are now eligible for a Covid vaccine. Arrangements are now being made to invite these individuals for vaccination and we will update as soon as we can.
Analysis by Public Health England estimates that the vaccines have prevented 10,400 deaths among those aged over 60 in England, up to the end of March 2021.
Findings from one of the largest studies of Covid-19 vaccination in England, found the number of infections dropped 60% from February 2021 to March 2021. It also found that fewer people were hospitalised and died if they did get infected since the vaccination rollout started.
Due to the reduced number of Covid infections all centres are now open for living donations (although restrictions may be in place in Belfast).
Kidney Care UK have published this blog from Dr Tony Williams on assessing personal risk of Covid and tools that can help with this.
The Government have updated information for parents and carers about early years providers, schools and colleges during the pandemic.
People in Wales who are not able to work from home can now get free rapid home testing kits. The lateral flow tests will be available to be picked up from local Covid-19 test sites from Friday 16 April. See the government website for more information.
We would like to thank everyone who attended our webinar - read the full report: Question Time: Covid-19 and CKD – Lifting Lockdown
The British Islamic Medical Association have published advice, based on opinions from Muslim scholars, that taking a Covid test or having the vaccine will not invalidate the fast during Ramadan.

Summary

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

Where does this information come from?

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

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

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

If you have:

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

Then you should get a test as soon as possible, self-isolate and stay at home at least for ten days and your whole household should stay at home for 10 days if you share a home with other people. There is government guidance on self-isolation, including the rules for your household and/or support bubble.

Please do not go to your renal unit until you have spoken to them on the telephone, and do not go to your GP or pharmacy. Dialysis patients with symptoms of Covid-19 should contact their dialysis unit. You will still need to go to dialysis, and they will let you know when that will be.

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.

If you are in the clinically extremely vulnerable group of patients and 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. Do this as soon as you get symptoms. In an emergency, call 999 if you are seriously ill. Do not visit the GP, pharmacy, urgent care centre or a hospital. Do not change your medications unless advised to do so by your renal unit.

For more information and support for people who are required to self-isolate because they have Covid-19, please see the government guidance for people with confirmed or possible coronavirus (Covid-19) infection

Testing for Covid-19

Anyone experiencing a high temperature, a new, continuous cough or a loss or change in your normal sense of smell or taste can have a test by visiting the NHS coronavirus page. For more information about having a Covid-19 test, please see our blog about one person’s experience of the testing process.

Those unable to access the internet can call 119 in England and Wales or 0300 303 2713 in Scotland and Northern Ireland to book a test. Testing will either be done by visiting a regional test centre, or home testing kits are available.

What does the result mean?

A positive result means that you have a Coronavirus infection.
- You must stay at home for at least 10 days if you are well.
- You should seek medical help if you are feeling more unwell.
- Everyone in your household and/or anyone you have been in close contact with from your support bubble must self-isolate for 10 days.
- Support for people who are self-isolating is available from NHS Volunteers.
A negative result
- Usually means you did not have Coronavirus on the day that the test was done.
- You could still get a Coronavirus infection in the future.

What should I do if I have a negative test result?

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

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

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

I had coronavirus infection and my swab tests are still positive after at least two weeks – what does this mean?

This is happening in a small number of kidney patients.
If you are feeling well, you do not need to worry.
As Coronavirus is a new disease, we still don’t know exactly what this means or whether you could still pass on the virus to others.
It is best to discuss this with your kidney doctor, who may need to ask infection specialists for advice.

Testing for people who do not have symptoms

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

Everyone in England who does not have Covid-19 symptoms can now get rapid lateral flow tests to check for the virus. Information about the different ways you can get the test are here
People in Wales who are not able to work from home can now get free rapid home testing kits. The lateral flow tests will be available to be picked up from local Covid-19 test sites from Friday 16 April. See the government website for more information.
Some employers are also running workplace testing schemes, and school and colleges have schemes for students, staff and parents (see our going to school section for more information).

Contact tracing

The NHS “Test and Trace” service has been set up to limit the spread of Coronavirus. When a positive case is identified, anyone who has been a “close contact” will be advised to self-isolate for 10 days from the day they were in contact with the person testing positive. A “close contact” is anyone who was within a 2 metre distance for at least 15 minutes.

The NHS Covid-19 App has launched in England and Wales as part of the testing and contact tracing programme. It will help to 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.

Research has found that for every 1% increase in the NHS Covid-19 app users, the number of coronavirus cases in the population can be reduced by 2.3%.

Scotland has a similar app that people are encouraged to download, called Protect Scotland.

The StopCovid app for the Northern Ireland is explained here

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

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.
If you develop symptoms, contact NHS 111 online coronavirus service to arrange for a swab test, or phone 119 if you cannot use the online service.

Financial support for self-isolation

People who have tested positive for the virus or have been told to self-isolate by NHS Test and Trace may be eligible for statutory sick pay (SSP) 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.

Antibody testing

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

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

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

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

Long Covid and the Covid Recovery Service

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

Are kidney patients affected by Long Covid?

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

The government have provided £18.5million for four key research studies into Long Covid, which will increase knowledge of how and why the virus causes some people to suffer long term effects following a COVID-19 infection - and will be an important tool in developing more effective treatments for patients.

Acute Kidney Injury and Covid

In normal times about one in five people admitted to hospital each year as an emergency has Acute Kidney Injury (AKI) and it often affects people who have not have had kidney disease previously. Unfortunately, Covid-19 can seriously affect the kidneys so planning for possible increases in numbers of people requiring dialysis and transplant is needed. The Parliamentary Science and Technology Select Committee heard from the late Professor Donal O’Donoghue, kidney doctor and sadly missed Chair of Kidney Care UK, about Acute Kidney Injury (AKI), when the kidneys stop working very quickly, and the long-term damage Covid-19 can do to kidneys. The Committee meeting was reported in The Guardian.

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

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

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

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

England: A national lockdown introduced in England in January is now easing. The rules and timetable for easing of restrictions are explained on the Government website.

Wales: Wales is currently moving from alert level 4 to level 3. Restrictions and questions and answers are available here, including easing of restrictions. Advice has now changed from stay at home to ‘stay local’.

Scotland: Scotland introduced a national lockdown which applies in most areas from 5 January. The rules and dates for further restriction easing are on the Government website.

Northern Ireland: The Northern Ireland Government introduced a lockdown from 26 December and have published their plans for easing restrictions.

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

Advice for the Clinically Vulnerable Group and people aged over 60

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

As well as following rules for the whole population, people aged over 60 or who are in the Clinically Vulnerable Group should be particularly stringent in following social distancing measures. This means do not go to the shops if at all possible (ask if a family friend or neighbour can go for you), avoid non-essential use of public transport and avoid unnecessary face to face contact with others. They may still go to work if they cannot work from home and their workplace is Covid-safe.

Clinically Vulnerable people living in areas currently under lockdown are advised to stay at home as much as possible, to carefully follow the rules and minimise contact with others. They may still go to work if they cannot work from home and their workplace is Covid-safe.

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

Advice for the Clinically Extremely Vulnerable Group

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

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

Advice for the CEV group currently varies across the UK nations. Shielding has now paused in England and Wales and is expected to pause in Scotland and Northern Ireland later in April. See our section on Guidance and Support for people who were advised to shield for detailed advice about the measures that people in the CEV group should take (and see Renal Association advice below for certain groups of kidney patients).

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

Which adults with kidney disease are clinically extremely vulnerable?

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

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

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

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

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

What is an inflammatory condition?

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

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

What are immunosuppressive medicines?

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

Covid-19 Population Risk Model

On Feb 16 2021, the government announced that it had identified an additional 1.7 million adults in England as potentially Clinically Extremely Vulnerable (CEV). This follows the development of a new risk assessment model (using the Oxford University’s QCovid risk prediction model). It is based on anonymised data from the first wave of the pandemic which identifies the factors that increase a person’s risk of poor outcomes from Covid-19. The tool combines a number of factors such as age, sex registered at birth, pre-existing conditions, ethnicity and BMI, to estimate the risk of serious illness from coronavirus. People above an agreed threshold of risk will be added to the CEV group and advised to shield. You can find out here how the tool was developed. It is currently in use only in England and governments from other UK nations are considering how it may be used in their populations. The BBC have published videos discussing this change in Punjabi, Tamil, Sylheti, Urdu and Gujurati.

The Covid-19 Population Risk Model uses the list of conditions that make people clinically vulnerable to Covid-19, which includes CKD stages 3 and 4. CKD 4 is a higher risk than CKD 3. However, the tool combines all of an individual’s characteristics, for example age, ethnicity, CKD stage, and other health conditions, to come up with their individual risk. A person with CKD 4 with no other risk factors may be at lower risk than a person with CKD 3 who has a number of other high-risk characteristics.

Those who are identified by the tool as potentially Clinically Extremely Vulnerable will be called for a vaccine immediately (if they have not already had it), advised to shield in areas where shielding advice remains in place and are also entitled to the range of support available for CEV people.

This is a more individualised approach that can consider multiple risk factors rather than a single condition. It provides another way of identifying people at high risk from Covid-19 and does not replace the existing routes by which a patient can be identified. It will not mean anyone is removed from the current shielding list.

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

We recognise that this might be scary news, please get in touch with Kidney Care UK if you would like support.

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

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 between March and July 2020, many people found the shielding advice very restrictive. They aim to make new 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.

The pausing of shielding advice in April 2021 is due to the significant reduction of cases of Covid rather than the vaccination rollout, as we are still learning about the protection offered by the vaccine. Therefore it is important that everyone continues to follow social distancing and hand and surface hygiene advice strictly, even after vaccinations.

Links to each country’s current advice to people in the clinically extremely vulnerable group are listed below. Please note, the Renal Association also advises certain groups of kidney patients to shield regardless of local advice.

If you are feeling anxious about the forthcoming changes, or anything else, do see our section on managing anxiety and fear or the Government’s Every Mind Matters site.

England:

Advice that clinically extremely vulnerable people should shield has now paused in England. CEV people in England should follow the same guidance as for the rest of the population but should be particularly careful to minimise their risk of contracting the virus. This letter is now being sent to the existing shielding group, as well as those newly added, to explain this and give further information.

From 1 April CEV people are still advised to keep social contacts at low levels, maintain hygiene measures and stay at a distance from other people. CEV people should continue to work from home if they can, but may return to the workplace if it is Covid-safe. There is support available for people returning to work, such as Access to Work which could be used to fund things like additional PPE or safer travel for example. See our employment section for more information. If your workplace cannot be made Covid-safe and you cannot work from home, you may be eligible for furlough, which is available until September 30 2021. SSP or ESA will no longer be available for reasons of shielding after 1 April.

Children and young people who are on the shielding list are expected to go back to school or college, unless otherwise advised by their clinician.

The decision to pause advice to shield was taken because cases of Covid-19 have fallen in the community, so there is a lower risk of catching the virus. Rates are now similar to September 2020, when shielding was also paused.

The shielding list will be maintained in case this group need to be contacted again with further information.

Support for clinically extremely vulnerable people in England

After 1st April, if you are struggling as a result of Coronavirus please visit www.gov.uk/find-coronavirus-support or use this postcode search tool to find out what help you might get from your local authority. Councils will still look to provide assistance wherever possible, so do please contact them if you need support. If you do not have internet access then please telephone your local council.

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

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

Wales

Advice that clinically extremely vulnerable people should shield has now paused in Wales. CEV people in Wales should follow the same guidance as for the rest of the population but should be particularly careful to minimise their risk of contracting the virus. This letter is now being sent to the existing shielding group, as well as those newly added, to explain this and give further information.

From 1 April CEV people can go to work, if they cannot work from home, as long as the business is Covid-secure (has taken reasonable measures to minimise risk to employees). There is support available for people returning to work, such as Access to Work which could be used to fund things like additional PPE or safer travel for example. See our employment section for more information. If your workplace cannot be made Covid-safe and you cannot work from home, you may be eligible for furlough, which is available until September 30 2021. SSP or ESA will no longer be available for reasons of shielding after 1 April.

In respect of going out and meeting others, you should follow the rules in place for everyone in Wales, but be particularly careful about social distancing and hand and surface hygiene.

Children and young people who are on the shielding list are expected to go back to school or college, unless otherwise advised by their clinician.

The decision to pause advice to shield was taken because cases of Covid-19 have fallen in the community, so there is a lower risk of catching the virus.

The shielding list will be maintained in case this group need to be contacted again with further information.

Support for Clinically Extremely Vulnerable People in Wales

From 1 April, if you need support and you do not have friends, family or neighbours who are able to help you, you should contact your local council or voluntary organisation. The Welsh Government letters sent out have local authority contact details at the bottom of the letter.

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

The Government have also published a list of sources of help with essential shopping. Although you are no longer advised not to visit the shops (but should keep to quiet times if possible) supermarkets will continue to offer priority access to online shopping delivery until 21 June 2021.

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

Northern Ireland

A graduated easing of the advice for CEV people commenced on 12 April 2021, because of the reduction in cases in the community. The first step will be easing of the advice around going to the workplace. From 12 April, if you are CEV you should continue to work from home where this is possible. If it is not possible, you can attend your workplace, provided your employer has taken the proper measures to ensure social distancing in your place of work, and you can travel to work in a way which allows for social distancing. See the government website for more information.

Future steps will see the gradual easing of other elements of advice for CEV people, and will be linked to easing of restrictions more generally, subject to review of the number of cases.

The shielding list will be maintained in case this group need to be contacted again with further information.

Support for Clinically Extremely Vulnerable People in Northern Ireland

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

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

Scotland

Most areas of Scotland have entered a period of lockdown. People in the CEV group in lockdown areas are advised not to attend work during this period, even if they cannot work from home. You will be written and this letter will act as evidence for your employer. The Scottish government have published updated advice for CEV people and sources of support.

The Scottish Government have confirmed that advice to CEV people in Scotland will change on 26th April 2021, when people on the shielding list can return to work and children and young people on the list can return to their place of learning. CEV people should follow advice for the general population whilst being careful to protect themselves against infection from Covid-19 (even after vaccination).

The shielding list will be maintained in case this group need to be contacted again with further information.

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

Public Health Scotland have recently published a report on shielding following a survey of people who are clinically extremely vulnerable. The shielding evaluation was conducted between March-August 2020, and looked at whether the advice to shield and support packages provided changed people’s behaviours. These are some of the things it found:

Evidence suggests that shielding guidance resulted in changing people’s behaviour. However, it is not the case that guidance was always necessary or sufficient to change behaviour.
Shielding was incredibly difficult for people and it was not always possible for people to follow the guidance stringently. Many people on the shielding list followed the guidance to the best of their ability, but restraints such as quality of life and caring responsibilities made it challenging at times
The shielding support programme reached a large proportion of the shielding group, and provided services such as the national free food box scheme that addressed real needs.
While the principle of protecting those at higher risk remains valid, it is not recommended that the shielding programme in its initial format be reinstated.

They plan to use the contents of the report, alongside on-going user research to help strengthen and inform future policies for those who are at higher risk

Support for Clinically Extremely Vulnerable People in Scotland

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

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

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

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

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

Support with shopping

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

We are aware that supermarket delivery charges add to the costs of your shopping so Kidney Care UK has written, alongside a number of leading charities, to the supermarkets to ask them to suspend charges for those who are most at risk from COVID-19.

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

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

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

Understanding and managing your risk

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

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

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.

For people who are in the extremely vulnerable group, it remains important to follow sensible precautions. This means:

Choosing quiet times to go outside and avoid crowds.
Strictly avoid contact with someone who is displaying symptoms of coronavirus (Covid-19). These symptoms include high temperature and/or new and continuous cough.
Staying 2m away from other people.
Wearing a mask

It is 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.

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

Infographics to help patients understand COVID-19 risk

Which kidney patients are at greater risk from COVID-19

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

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

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

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

It is really difficult to measure exactly a person's individual risk. 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. There are ways that you can reduce this risk by following measures you will be familiar with such as social distancing.

How likely you are to become severely unwell if you do become infected with Covid-19 depends on many things and in particular, your age, ethnicity, sex (higher risk in males) and whether you have other health conditions. Being on dialysis, having had a kidney transplant or having CKD stage 5 unfortunately does increase your risk of becoming severely unwell with Covid-19 should you become infected. People with kidney disease often also have other health conditions such as diabetes and heart disease which increase their risk further. Risk calculators (where people can work out their own level of risk) are available but some are not detailed enough to be helpful. For example, some include kidney disease in general but do not break down this category into early kidney disease, people on dialysis or those with transplants. The following tools do enable a more detailed assessment of risk:

The new Covid-19 Population Risk Assessment tool has been developed to enable a more individual approach to risk assessment, and has identified more people who are at high risk from a very poor outcome from Covid-19. It is currently being used in England and not in the other UK nations. 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. Therefore, it is important that people in the clinically extremely vulnerable group continue to follow the guidance for very high risk people.

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.

You can discuss individual risk with your renal team who can help you think through your own situation.

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

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

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

Information about local rates of infection

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, as this is a key part of understanding your level of risk.

The BBC have produced a tool which tells you how many cases there are in your area and how this compares with other areas.

The Government also have more detailed online information about the number of cases locally and nationally.

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.

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.

Leaving the house

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.

Can I go outside at all?

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

At the current time, although CEV people can choose to meet people outdoors, they are advised to minimise the number of social with people from outside their households low

Should I wear a face covering?

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

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

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

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

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

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

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

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

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

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

What about my monitoring and blood tests?

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

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

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

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

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

Can I go to the shop?

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

If you have not been advised to self-isolate, avoid shops or shield, the social distancing guidance applies. Social distancing guidance advises that vulnerable people should ask if friends or neighbours can help or try to choose a quiet time to shop and don’t forget to wash your hands. If you are finding it difficult to get to the shops, we recommend seeking support from local voluntary groups such as the Covid Mutual Aid UK, your local authority, or NHS Volunteers in England.

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

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

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

Is it safe to travel on public transport?

The risks of travelling on public transport are significant. At present, our Renal Association colleagues advise that clinically extremely vulnerable patients should avoid all non-essential travel on public transport. In areas where shielding advice applies, Government guidance for people in the clinically extremely vulnerable group also advises against travelling on public transport.

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. It is best not to travel at rush hour when you cannot avoid contact with others. The Access to Work scheme may be able to offer support, such as covering costs of safe travel to and from work.

Should I let people in the house for emergency maintenance?

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

Is it safe to have a takeaway?

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

Can I go to the hairdresser/barber?

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

Can I go to the gym/play sports?

You may visit the gym or play sports if local rules allow it, although in some areas of the UK these venues are closed and it is advised CEV people should minimise contact with people from outside their household.

When they re-open and guidance for CEV people recommends it is safe, 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 early years providers, schools and colleges during the pandemic.

As part of the plan to ease restrictions in England, the Government announced additional measures for when schools reopen, rapid results testing has been provided to schools and colleges to conduct regular (voluntary) testing of the schools’ workforce and also secondary school and college pupils. In addition, if you’re a member of a household or childcare bubble of a pupil or staff member of a school or college, you can get a twice-weekly rapid lateral flow covid test. This has broadened out to everyone in England. See the Government website for more information and how to access these tests.

The Government has published guidance about face coverings in educational settings. Schools and colleges have the discretion to require face coverings in indoor communal areas where social distancing cannot be safely managed, if they believe that it is right in their particular circumstances. Primary school children are not required to wear face coverings, but headteachers of primary schools may require staff and visitors to wear face coverings.

Children with kidney disease and school

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

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

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

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

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

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

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

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

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

Covid-19 vaccinations

The UK medicines regulator has approved 3 vaccines for use against Covid-19 in adults. These are the vaccines developed by Pfizer, Oxford/AstraZeneca and Moderna. The first two are now being used and Moderna is also starting to be rolled out. As of 18April, over 32 million people had received the first dose of the vaccine and over 9.9 million people had received the second dose.

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

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

Antibody tests

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. See below for more details.

Scams

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

Key points:

The vaccines will have 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 they are likely to work well enough to make it worthwhile having the vaccine.
Even after you have had both doses of your vaccine, clinically extremely vulnerable people should continue to carefully follow the advice that applies in their local area, including any advice to continue to shield.
If you have any questions or concerns please speak to your kidney doctors or GP.

What have the vaccine clinical trials found?

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 Oxford/Astra Zeneca vaccine appears to be less effective than the other two (Pfizer-BioNTech and Moderna) within the clinical trials, 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.

Does age affect how well the vaccines work?

It doesn’t appear so: older people’s immune systems have just as good a response as a younger person to the vaccine.

Was there 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

9.6% of participants in the Phase 2/3 studies were Black, 4.6% were Asian, 2.4% were multi-racial.

AstraZeneca

In the clinical trial population used to calculate the efficacy, 16.4% of subjects reported their race as non-white (4.1% Black, 4.4% Asian, 3.1% Mixed and 4.8% Other). In the larger clinical trial population used to characterise the safety, 24.2% reported their race as non-white (10.2% Black, 3.4% Asian, 4.1% Mixed and 6.5% Other). 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%.

How well do the vaccines work for kidney patients and those taking immunosuppressants?

We do not know how many kidney patients were included in the vaccine trials because trials generally include the wider population rather than people with specific health conditions.

As the vaccine is new, we will not have all the answers to how different people respond for some time. It may be that people with kidney disease and people taking immunosuppressants do not respond quite as well. However, it is expected that the vaccines will work well enough make it worthwhile having the vaccine, especially when the high risk to kidney patients from Covid-19 is considered.

To answer these questions, separate studies are required:

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

The UK renal registry will be reporting on the real world evidence but the laboratory based research studies will rely on researchers, patients and funders.

Studies have now started to assess the response of kidney patients to vaccination and to identify whether revaccination is required (as with flu vaccination). We will publish news from these studies as soon as it is available:

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

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

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

Some early studies report a weak antibody response in certain patient groups after the first vaccine dose and a stronger response after the second. However, we do not know yet what antibody levels tells us about a person’s ability to fight off Covid or about the response of T-cells which are also important in protection. Ongoing research will tell us more and also inform decisions about best timing between doses, as there is uncertainty about this currently. It remains vital to have your second dose of the Covid-19 vaccine.

Please see the written report of our webinar held on 30th March for more information about the effectiveness of the vaccines in kidney patients.

Early data about antibody response

An American study published in the Journal of the American Medical Association (JAMA), showed a lower antibody response rate to the first dose of a Covid-19 vaccine in solid organ transplant recipients. However, vaccination trains the body to respond to infection in multiple ways. Antibody response is only one facet. Also, this study does not tell us about what happens after the second dose of the vaccine, which may be more similar to the rest of the population. Past experience suggests that people with a sluggish immune system tend to respond better to the second dose. So this study is only part of the story.

However, although it is early days, it is enough to cause concern. What the study shows is similar to what we’ve seen in other vaccines, for example the flu vaccine. There tends to be a lower immune response among kidney patients, and particularly among older patients, those who are on anti-metabolites (mycophenolate or Azathioprine) or higher combined immunosuppressive drugs and those with worse kidney function. So younger transplant recipients with a well-functioning kidney are likely to have a better response to the vaccine. Based on the data seen so far, it remains very important to keep following social distancing and hygiene rules for the present time.

In terms of different groups of kidney patients, people on dialysis seem to have a better response to the vaccine than transplant recipients and people with CKD not yet on dialysis may have an even better response. Most of the data so far concerns the Pfizer and Moderna vaccine, so we will have to wait for data about the Oxford/AstraZeneca vaccine and also for evidence about response to the second dose which should be coming soon.

Should I buy an antibody test to see how well I’ve responded to the vaccine?

We would advise you do not buy a test at this stage as it may not be able to provide reliable information on your protection against Covid-19. This is because we are still learning about the body’s response to the vaccine and what this means for your level of protection. 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.

It is possible for a person to have no antibodies detectable after vaccination, but for that person still to produce a strong and helpful immune response if they are exposed to COVID19. Whilst there are a number of things we do not yet know in this area, having low or undetectable antibodies should not cause kidney transplant patients to be unduly anxious.

Furthermore, there are many different types of antibodies and types of tests. Testing for one type of antibody is not likely to tell you whether you are protected against Covid-19. It is best to speak to your doctor if you have questions about antibody tests. This Q&A from Imperial College has lots of useful information about vaccines and the antibody response.

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.

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

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

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. 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.

The safety of Covid-19 vaccines

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.

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

The speed of development might make people concerned, so it is important to say that corners have not been cut. Before they can be used, the vaccines must pass all the same safety tests and provide the same level of results to the regulator (the MHRA) as for any other vaccine. The BBC has a helpful explanation of the safety checks.

The usual process for vaccine development is relatively slow and it was recognised that things had to be done differently in response to this worldwide emergency. During the development of the Covid-19 vaccines, regulators and researchers have worked in parallel and avoided delays, but are doing all of the same safety checks as with any other vaccine.

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

Are there any side effects to the vaccines?

As with other vaccines, there may be mild side effects to the Covid-19 vaccine such as having a sore arm or feeling tired for a day or two. These can be treated with paracetamol 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.

MHRA’s safety monitoring and analysis found most reported side-effects are mild and short lasting, reflecting a normal immune response, and the benefits far outweigh the risks. The MHRA encourages people to report suspected side effects to the vaccine on their Yellow Card reporting site.

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

Astrazeneca/Oxford vaccine and rare blood clots

People aged under 30 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. Although there is still uncertainty about whether the clots are linked to the vaccine the data does suggest a slightly higher incidence in younger age groups. As the risk of serious disease from Covid-19 is lower in people aged under 30 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) 30 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.
20 million doses of the AZ vaccine have been given since 4 January 2021 and there have been 79 reports of the rare blood clot. The current estimate is around 4 blood clots per 1 million first doses given.
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, severe headache which is not helped by usual painkillers or is getting worse
- a headache which seems worse when lying down or bending over or an unusual headache that may be accompanied by: blurred vision, nausea and vomiting; difficulty with your speech; weakness, drowsiness or seizures
- new, unexplained pinprick bruising or bleeding
- shortness of breath, chest pain, leg swelling or persistent abdominal pain
Mild flu-like symptoms, including headache, chills and fever remain one of the most common side effects of any COVID-19 vaccine. These generally appear within a few hours and resolve within a day or two.
Pregnancy predisposes to thrombosis, therefore women should discuss with their healthcare professional whether the benefits of having the vaccine outweigh the risks for them.
There are no known factors which put people more at risk of this extremely rare blood clot.

Are the Covid-19 vaccines live?

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.

Could the vaccines cause rejection of my transplant?

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

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

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

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

Do I need to change any of my medications such as immunosuppressants when I receive the vaccine?

No. You should not change or stop any of your medications without consultation with your healthcare team.

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.

Safety and efficacy of the vaccine for people with specific kidney diseases

There is no reason to think there are particular risks for adults with these conditions, but you are advised to speak to your doctor if you have any concerns.

Will the vaccines interact with any other medicines?

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.

Which vaccine will be best for kidney patients?

The vaccines people are offered will be appropriate for them and their individual circumstances and characteristics. This decision is based on clinical judgement supported by the advice of Joint Committee on Vaccination and Immunisation (JCVI).

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

Should people who have already had Covid get vaccinated?

Yes. The MHRA have looked at this and advised that getting vaccinated is just as important for those who have already had Covid-19 as it is for those who haven’t. You should wait at least 28 days after testing positive for Covid-19 before receiving your vaccination.

Will I be followed up after I have had the vaccine?

As with currently available vaccines, for example the seasonal flu vaccine, there will not be individual follow up. You should alert your doctor if you have any worries about changes in your health, as at any time.

Who will contact us when it is our turn to have the vaccine?

You will be contacted by your kidney team or your GP when it is your turn to have the vaccine, although people in some groups are now being asked to book an appointment themselves, if they have not already have their vaccine (see below). See each country’s vaccine website for more details.

England: People aged 45 or over and those in priority groups 1-9 (which includes clinically extremely vulnerable and clinically vulnerable) are encouraged to book a vaccine if they have not yet had it. Household members aged 16 and above of immunosuppressed people should be given a letter from the person’s GP with information about how to book. If you have had a notification to book through the national booking system, it can be accessed online or people can call 119 free of change between 7am and 11pm.

Northern Ireland: The following groups are encouraged to book a vaccine if they have not yet had it; people who have had a letter from their GP, hospital specialist or employer; people aged 40 or over; people who are clinically extremely vulnerable; those who have an underlying condition aged 16 -17 at 31 March 2021, who have a GP letter. Please note that this group CANNOT book an appointment at the SSE Arena. Please see here for more details.

Scotland: Information on which groups are currently being invited for vaccination is here. You will be contacted either by phone or letter. Clinically extremely vulnerable people can call the Covid-19 vaccination helpline (0800 030 8013) if they need help with transport to vaccination. More information is on the NHS Inform vaccination webpage. If someone in your community requires the information in another language or format, it is also available to download from the NHS Inform vaccine website.

Wales: Information on which groups are currently being invited for vaccination is here. Further information for people who think they should have their vaccination and have been missed is here. Adults aged over 16 living with immune-suppressed adults in Wales are now eligible for a Covid vaccine. Arrangements are now being made to invite these individuals for vaccination and we will update as soon as we can.

The Renal Association is now collecting and reporting the numbers of kidney patients who are being vaccinated. They have created a ‘heatmap’ which shows progress in different areas in the UK. NHS England have published an updated report showing that 2 million clinically extremely vulnerable people have been vaccinated.

Will families of kidney patients be able to have the vaccine at the same time?

The Joint Committee on Vaccination and Immunisation (JCVI) have recommended that people aged 16 years and above living with adults that are immunosuppressed should be prioritised for the Covid-19 vaccine along with those in group 6 and therefore should be invited for vaccination in the first phase. This will include people aged 16 and above who share a household with adults with kidney transplants and other adult kidney patients with severe immunosuppression. This advice currently applies in England and Wales only.

GPs in England have been asked to write to their patients who are severely immunosuppressed, to inform them that their adult household members are eligible for the Covid-19 vaccine. Household members should contact their GP to arrange a vaccine. They will need to take the GP letter and proof of address to their vaccination appointment. A letter to NHS staff is here and the operational guidance includes a definition of ‘severely immunosuppressed’. Hospital specialists will also be asked to identify patients who meet the criteria of severely immunosuppressed and ask their GPs to send the letter.

The Welsh system for family members to book appointments will be announced soon.

People aged 16-17 should have the Pfizer vaccine, unless there is a reason that the Astrazeneca/Oxford vaccine is more appropriate (e.g. that young person is housebound).

The main carers of people who are at increased risk from Covid-19 (such as many kidney patients), including carers who do not live with the person, fall within JCVI’s priority group 6 and can book a vaccination now. In England, you will need to be registered as an unpaid carer in order to be prioritised due to your caring duties. If you have not done so already, please contact your GP to register yourself as a carer and you will then be prioritised. From 1 April, only people with an NHS notification inviting them to do so can book through the national online booking system. Unpaid carers who have not yet received a notification invite should contact their GP to register as a carer and discuss vaccination Many GP practices have online forms through which you can register as a carer. More information for carers is available here.

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

Information on vaccinations for unpaid carers in Wales is here.

In Northern Ireland, if you are the main carer (aged 18 or over on the 31 March 2021) of an elderly or disabled person and have been unable to book a vaccine appointment through the online booking platform or call centre, you should contact your local Trust care co-ordinator.

Will we need to take a booster for the Covid-19 vaccine and what are the dosage intervals?

The currently approved vaccines both require two doses initially. The government made the decision to extend the initial dosing intervals from between 3 and 4 weeks to between 4 and 12 weeks. The decision was made for very strong public health reasons and followed a thorough review of the data. The vaccines were given in a particular way during their trials so the effectiveness conclusions are based on those precise arrangements. However, a longer gap between doses may not reduce the effectiveness and may even improve it as lots of other vaccines are given with a three-six month gap from the initial dose to a booster. Research indicates, for most people in the general population, the first dose gives a very good level of protection after three weeks until at least the second dose.

Some studies have reported a weak antibody response among certain patient groups after the first vaccine dose and a better response after the second, although this does not give the whole picture on how well somebody could fight off Covid-19. Ongoing research about kidney patients’ response will inform decisions about best timing for the second dose. Currently we cannot be sure whether a later or earlier dose works better for kidney patients. Therefore, it is recommended that until the science is clearer, kidney patients (including transplant patients) should have their second dose when scheduled through current systems - which means at up to 12 weeks for most patients. If the second dose is given before 12 weeks, this is also not a problem, as long as the correct minimum gap between doses is maintained (which is 3 weeks for the Pfizer vaccine, and 4 weeks for the Oxford/Astra-Zeneca vaccine). 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?

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

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

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

Should I receive the same vaccine for both doses?

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

What priority will be given to kidney patients when it comes to getting the vaccines?

The Joint Committee on Vaccination and Immunisation (JCVI) currently advises that adults are given the vaccine in the following order for phase 1:

Residents in a care home for older adults, and their carers
Everyone aged 80 and over, and frontline health and social care workers
Everyone aged 75 and over
Everyone aged 70 and over, and those who are clinically extremely vulnerable
Everyone aged 65 and over
People aged 16 to 64 with underlying health conditions which put them at higher risk of serious disease and death from Covid-19 (who are not in group 4)
Everyone aged 60 and over
Everyone aged 55 and over
Everyone aged 50 and over

Phase 2 of the vaccination programme has now been confirmed by the JCVI with vaccinations in this order

all those aged 40 to 49 years
all those aged 30 to 39 years
all those aged 18 to 29 years
and people aged 45 and over are now being invited.

An additional 1.7 million people in England have been identified by Covid-19 Population Risk Assessment as potentially Clinically Extremely Vulnerable and so fall within group 4. The tool has analysed their individual risk factors and estimated that they are at very high risk of a poor outcome from Covid-19. These individuals will be invited for a vaccine immediately, although many will be aged over 70 and will already have been vaccinated. If an eligible person has not been able to receive their vaccination previously e.g. because they were unwell, they will still be prioritised for appointments either through the online booking system or their GP.

What safety measures should I be taking once the vaccination programme is rolled out?

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 their vaccination. This includes working from home if possible (and if you are advised to shield) and Kidney Care UK Advocacy Officers can help with this if there are any issues with your employer.

Once the vaccination programme rolls out more widely, a gradual return to usual activities will probably be best and you must follow government guidance. Vaccinated people may still be infectious, so kidney patients should be very careful. It would be sensible to wait until high numbers of people in the general population have had the vaccine and infection rates in your community have come down before getting out and about too much.

What will the risk from Covid-19 be once the vaccine is rolled out?

Covid-19 will continue to be present but it will not be something to be scared of because it will not be circulating in communities as it is now, and your chances of picking it up will be very low. It will be another risk to manage by following the same infection control measures as with other diseases, such as washing hands regularly (for example, like the ‘flu).

Can you still infect others once you have been vaccinated?

It is likely to be some time until we have sufficient data to provide a clear picture of how vaccination impacts on onward transmission. While the Pfizer and AstraZeneca vaccines provide protection to a vaccinated person from serious disease, we do not yet know if they prevent someone from passing on the virus to others. You will therefore still need to follow the guidance regarding reducing transmission of the virus and protecting others.

Should I still go to my vaccine appointment if I am clinically extremely vulnerable and there is a lockdown in my area?

The Government advise that you should still attend all medical appointments, including vaccination appointments, whilst following careful precautions and avoiding public transport. If you need help travelling to an appointment in England you can call NHS Volunteers.

Your healthcare team will ensure the setting where you receive your vaccination is safe.

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.

How will Covid-19 affect me if I was born with one kidney/have been/intend to be a living kidney donor?

If you have one kidney and have stable kidney function then you are classed as part of the general population and are at no higher risk of Covid-19 (unless you have other health conditions). This includes living donors who have already donated. You will therefore be vaccinated with your age group. If you are planning to become a living donor and you live with your intended recipient you may be offered the vaccine at the same time as they receive theirs.

Can children receive the vaccine?

Very few children are seriously affected by Covid-19 so they are not currently the focus of the vaccine effort. All of the vaccine trials were conducted on adults and did not include anyone under the age of 16. The Pfizer and Moderna vaccines are licensed for use in those aged 16 and over and the Oxford vaccine for those aged 18 and over. Some young people who are considered at increased risk such as those waiting for a transplant will be offered the vaccine in the initial stages, but only if they are aged 16 or older. A very small number of children aged over 12, who have severe neuro-disabilities and live in an institutional setting, may be considered for vaccines. This would be considered an unlicensed use if under 16.

Do the vaccines contain any animal products/alcohol?

The MHRA has confirmed that the COVID-19 Vaccine AstraZeneca and Pfizer/BioNTech COVID-19 vaccine do not contain any components of animal origin.

There is a trace amount of ethanol in the vaccine, which is less than the quantity found in bread. The Government have worked closely with Imams who have reviewed the ingredients of the AstraZeneca vaccine and confirmed that it is Halal.

Can I have my vaccination during Ramadan without invalidating the fast?

The British Islamic Medical Association have published advice, based on opinions from Muslim scholars, that taking a Covid test or having the vaccine will not invalidate the fast during Ramadan.

Links to Covid-19 vaccine information from other organisations

NHS information: the NHS have published a hub for information about the vaccine.

The Scottish Government have published a vaccine information page.

The Welsh Government have published a vaccine information page.

The Northern Ireland Government have published a vaccine information page.

The Covid Symptom Study Zoe has published a recording of its webinar which looks at what the data tells us about how the vaccines are working in the real world and the antibody response. It notes we don’t have the answer yet to how people with compromised immune systems will respond to vaccine.

NHS Blood and Transplant (NHSBT) have a patient and clinician Q&As on the Covid-19 vaccines, with a particular focus on organ donation and transplants.

The Medicines and Healthcare products Regulatory Agency (MHRA) have published information about its approval of the Oxford/AstraZeneca vaccine, including information for the recipient of the vaccine, and the Pfizer vaccine, including updated information on allergies, pregnancy and dosage intervals.

NHS information: the NHS have published a hub for information about the vaccine.

Vaccines and allergic reactions: The MHRA have published advice about the Pfizer Covid-19 vaccine and people with a history of severe allergic reactions (anaphylaxis). This advice was recently updated so that anyone with a previous history of allergic reactions to the ingredients of the vaccine should not receive it, but those with any other allergies such as a food allergy can now have the vaccine.

Vaccine information in languages other than English: The BBC have published information about the vaccine in Urdu, Punjabi, Gujurati, Sylheti and Tamil. It has also published videos addressing fake stories about the vaccine in: Urdu, Tamil, Gujarati, Sylheti and Punjabi And also videos in those languages which help people to spot fake vaccine invitations and scams.

The British Islamic Medical Association have published statements confirming that both the Pfizer and Oxford/Astrazeneca vaccines are recommended for use for eligible individuals in Muslim communities, supported by the British Muslim Council. . The British Board of Scholars and Imams have produced a helpful and informative top ten summary of questions and answers on vaccines.

A number of well-known celebrities from ethnic minority communities have got together to make this message encouraging people to get vaccinated – please share it.

The Cameroonian Doctors Association held a very informative webinar about Covid-19 and vaccines, with speakers including Dr Elvis Ngassa, a transplant surgeon at the Royal London hospital.

The Caribbean and African Health Network have a range of information on Covid-19 and the vaccine.

The Renal Association and British Renal Society have published a statement on Covid vaccines for kidney patients. This recommends that people receiving dialysis in a hospital or unit should be a priority group for receiving the vaccine. It also calls for joint work with scientists to measure how effective the Covid vaccine is for kidney patients, identify the best vaccination strategy for them, and to develop alternative therapies for any kidney patients who do not respond to the initial vaccination programme.

A briefing document on Covid-19 vaccination which is written for professionals working in the renal community has been published. A set of frequently asked questions , similar to those described below, has been sent out to kidney units.

The British Transplant Society, which represents professionals involved in transplantation in the UK, have published a statement supporting Covid-19 vaccination for people with transplants and those on the transplant waiting list (updated 6th January). It states that whilst solid organ transplant recipients were not included in clinical trials, given experience with other vaccinations, there is no evidence to suggest that any of the available vaccinations for COVID-19 would not be safe and protective in this group of patients.

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

The Scottish Government have published a vaccine information page.

The Welsh Government have published a vaccine information page.

The Northern Ireland Government have published a vaccine information page.

The patient information leaflet for the Pfizer Covid-19 vaccine, which includes the ingredients, can be read here. This confirms they do not contain any ingredients from animals.

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

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

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

Dialysis

Kidney Care UK, the Renal Association, the British Renal Society and the Association of Nephrology Nurses UK held a webinar about Covid-19 and dialysis. The recording of this and a summary of the discussion can be found here.

I am on dialysis - am I at risk?

It is thought that you are at increased risk of severe illness from Covid-19 if you are on dialysis. You will still get your dialysis but you may be asked to come in at a different time. Guidance has been published to provide renal staff with practical advice to minimise the risk of Covid-19 transmission within both in-centre and satellite adult haemodialysis units.

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

Personal protective equipment for people on dialysis

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

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

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

The Renal Association, with the Renal Nutrition Group, have published guidance on eating and drinking during hospital or satellite unit based dialysis . This confirms that is should be the patient’s decision whether to eat or drink, once they understand how to do so safely. It highlights that, if you decide to eat or drink, you can take off your mask but must immediately put it back on after eating or drinking. You should use hand sanitizer before you take your mask off and before putting it back on. It is particularly important that when you take your mask off you ensure that you keep a two metre distance between you and all other people on the unit. This includes other patients on dialysis and your dialysis nurses. This also applies in units run by Fresenius. We are aware that this guidance may not have reached all units yet and are working to resolve this.

How will I get to dialysis?

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

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

Measures are in place to make sure transport services are provided in a way that protects patients:

Patients with Covid-19 symptoms will be transported individually (or, if this is not possible, with one other patient who also has symptoms. Both will be required to wear facemasks).
All volunteer drivers will be required to undergo an enhanced DBS check (to check criminal records etc.) and receive guidance on how to undertake the role safely before they begin. Volunteers can only begin their roles once these checks and training are completed.
Vehicles will be fitted with bulkheads, which separate the passenger on the back seat from the driver. Drivers will be trained in how to clean vehicles thoroughly in between journeys and carry out a deep clean at the end of the day.

In Wales, Non-Emergency Patient Transport Service (NEPTS) will continue with appropriate safety measures.

The transport re-imbursement scheme is available for all patients who were in receipt of transport to attend unit haemodialysis from the Welsh Ambulance, Non-Emergency Transport Service (NEPTS). Payments of 38p per mile will be made for travel to and from your home and dialysis unit from the date your application to the scheme is accepted. This scheme has been provided as a way to enable patients, friends and family, where they can, to support the efforts of the Welsh Ambulance Service to continue to provide essential services at this difficult time.

For those who do not wish to join or are unable to join, please be reassured that transport will still be provided by NEPTs.

If you need more information, please don’t hesitate to ask your nursing team for more information.

In Northern Ireland, people are being asked if family members can take them to dialysis, although patient transport will be available to those who need it.

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

Arrangements for deliveries of home haemodialysis and peritoneal dialysis supplies should continue as usual, although you may be asked to hold more boxes of kit or fluids. If you are on peritoneal dialysis and have frequent blood tests, you may need to make some changes such as having your tests locally rather than going to hospital. If you need support please contact local voluntary groups such as Covid Mutual Aid UK or NHS Volunteers is still available in England.

Home dialysis supplies

We heard from you about some concerns with the way in which home dialysis supplies were being delivered, whereby delivery drivers have dropped supplies at the doorstep rather than bringing them into the house. This was done with the intention of reducing the risk of infection of Covid-19 but is clearly not a practical solution for the many patients are not able to pick up and carry supplies to where they are needed.

Guidance for drivers states patients will be contacted and asked about how they would like their delivery to be made. Supplies will be taken to the usual location in a patient’s home whenever this is necessary.

Drivers will receive training in the guidelines and also how to reduce risk of infection, by using gloves and hand gel and keeping a two metre distance between the driver, patient and any household members.

All direct access deliveries to garages or sheds will remain unaffected.

Decisions about the provision of care

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

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

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

Carers/relatives

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

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

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

I have professional care staff coming into my home

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

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

What about children with kidney disease?

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

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

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

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

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

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

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

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

Extremely vulnerable patients

Women who have had a kidney transplant, or take immunosuppression for kidney diseases, are defined as “extremely vulnerable” by Public Health England. If you are contacted to confirm that you are in this group, you are advised to follow any shielding measures in place where you live to keep yourself safe, irrespective of pregnancy. This information is now subject to update, and advice from the Royal College of Obstetricians and Gynaecologists is helpful.

Women who are currently pregnant

Pregnancy has not been associated with more severe Covid-19 disease in women, nor has there been an effect on babies’ development. However, there is limited information on this so far and interactions between kidney disease, pregnancy and coronavirus have not been excluded.

Pregnant women with kidney disease are defined as “vulnerable individuals” and should follow Public Health England advice on social distancing.

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

Women who are considering a pregnancy

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

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

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

Transplantation

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

Outpatient appointments

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

Living donation

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

Unfortunately, due to pressures on NHS services, the January 2021 Living Kidney Sharing Scheme matching run was suspended and the usual matching run timetable will resume from April 2021. This follows consultation with all transplant centres. The timetable for the remainder of 2021 will be issued shortly.

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 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.

NICE (the National Institute for Health and Social care Excellence) has issued advice for clinical teams caring for people waiting for or living with transplants and people who have donated a kidney (live donors). Kidney Care UK contributed to this advice. For deceased donation, all organ donors will be assessed in line with advice from NHSBT to ensure the procedure is safe.

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

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

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

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

Organ Donation opt-out plans

The opt-out system of organ donation, often known as Max and Keira’s law, has come into force in England. The main impact of this will be realised after the pandemic. You will always have a choice about your organ donation decision. See our news story for more information.

As a result of the coronavirus pandemic, the opt out system was delayed until March 2021 in Scotland, but is now in place.

In Northern Ireland, the government is considering whether they should move to an opt out system for organ donation and have just completed a public consultation.

The opt out system is just one part of a wider package of measures that are already in place or underway to increase donation and transplantation.

Other conditions

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

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

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

The majority of people with vasculitis, lupus, or autoimmune kidney disease (glomerulonephritis) who are in remission and are taking 10mg or less of prednisolone a day (or equivalent) are considered to be at lower risk of a poor outcome following Covid-19 infection, and should generally be able to return to work. Exceptions to this would be those aged over 70 years, those who are advised to shield or work from home where possible 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) who can return to work but with workplace adaptations to reduce risk as much as possible (more detail on these adaptations is provided in the Employment and Benefits section).

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 if that is the case it is important to take the advice of the government to socially distance or shield.

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

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

I have high blood pressure, am I at risk?

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

Medications

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

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

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

People who are clinically extremely vulnerable are being offered a free four-month supply of vitamin D supplements. 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.

It has always been considered good practice for people with advanced kidney disease have to their vitamin D levels brought up to the correct level because they are often low in this vitamin. So it is likely you are already being prescribed supplements, for example Adcal, and you should check with your doctor before taking any additional supplements.

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

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

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

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

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

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

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

Antibiotics or any other new medication you are prescribed

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

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

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

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

Your prescriptions

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

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

Renal units already use information on the kidney patients they look after to help them plan safe and effective care. The need to plan changes to respond to the Covid-19 infection makes this even more important at the present time.

Renal units already regularly share some information about their patients with other organisations – for example between the UK Renal Registry (UKRR) and NHS England to allow comparison of care between different centres. This is always done with very strict rules regarding confidentiality, and if a patient does not want their data being used they can let their renal centre know and they will ensure that they “opt-out”.

The UKRR are working with renal units to support them during the Covid-19 pandemic. They have sought permission to link the UKRR list of kidney patients to other data-sources, such as the Public Health England (PHE) list of people who have tested positive for Covid-19, or the hospital episode statistics (HES). This will allow them to report on how the virus has affected kidney patients in the UK. This data was also used to guide shielding advice.

Sadly, this data has confirmed that people with kidney disease who have had a transplant or are receiving haemodialysis in a hospital or unit are more at risk of worse outcomes from Covid-19 than the general population. The data also indicated that people on home dialysis may have slightly better outcomes than people going into a unit for dialysis, although it is harder to interpret the data for this group. As with the general population, the UKRR data also showed higher rates of recovery in younger people.

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. Kidney Care UK will continue to campaign and publicise the importance of keeping all kidney care patients safe during this outbreak.

A study published in October using the UKRR data looked at outcomes for people who were on in-centre haemodialysis (ICHD) in England and Wales, one week after testing positive for Covid-19. They found people on ICHD were at much higher risk from Covid-19 than the general population. Older people on ICHD were at greater risk than younger people on ICHD (people aged 80 and over had a 4.2 greater risk of dying than those aged 18-59). However, younger people on ICHD were at much higher risk from Covid than younger people in the general population. This difference in risk between people on ICHD and the general population declined with age, although older people on ICHD were still at greater risk of dying than older people from the general population.

Out of the 718 adults on ICHD aged 18-59 who tested positive to Covid-19, there were 86 deaths (12%). Of the 1,190 people on ICHD aged 60-79 who tested positive to Covid-19, 340 died (29%), and of the 428 people on ICHD aged 80 who tested positive to Covid-19, 187 died (44%)

The study found 87 out of every 100 people on ICHD with Covid were alive after 1 week, meaning 13 had died. Of the 116 children on ICHD in England and Wales, there had been 3 cases of Covid and no deaths.

Of the 21,509 adults on ICHD in England and Wales, 2,385 people had tested positive for Covid and of those 613 had died. As well as increasing age, how long the person had been on dialysis increased the risk of the person dying and there was some weak evidence that people from an Asian background were at greater risk of dying should they contract Covid.

Data on outcomes for people with kidney transplants who are hospitalised with Covid shows 1,078 of the 39,706 (2.7%) people with a functioning kidney transplant are reported as testing positive for SARS-CoV-2. Of these, 19% (208) are reported to have died as at 11 November 2020.

Some of you have said that you would like more information on studies which may have an impact on kidney patients so we will aim to publish them here. Regular surveillance reports are published by the Renal Association.

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

NHS Blood and Transplant

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

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

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

Employment and benefits

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

The current advice across the UK is that everyone who can work from home should continue to do so. Advice for clinically extremely vulnerable (CEV) varies across the UK. Advice to shield paused in England and Wales from 1 April and is expected to pause in Scotland on 26 April. Once advice to shield pauses in these nations, 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. Employers are asked to do all they can to support this, including moving the CEV person to another role if required.

In Northern Ireland, a graduated easing of the advice for CEV people commenced on 12 April 2021, because of the reduction in cases in the community. The first step will be easing of the advice around going to the workplace. From 12 April, if you are CEV you should continue to work from home where this is possible. If it is not possible, you can attend your workplace, provided your employer has taken the proper measures to ensure social distancing in your place of work, and you can travel to work in a way which allows for social distancing. See the government website for more information.

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

An additional 1.7 million people in England have been identified by Covid-19 Population Risk Assessment tool as potentially Clinically Extremely Vulnerable. They have all been written to by the Government with information and advice. The tool has analysed their individual risk factors and estimated that they are at very high risk of a poor outcome from Covid-19. These individuals are advised to follow the government guidance for Clinically Extremely Vulnerable people.

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

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

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

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

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

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

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

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

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

Talk to your employer early – they are likely to want to do what they can to support you
Ask your employer to carry out a risk assessment and share the results with you
Speak to your kidney doctor, they will be able to provide a letter for your employer about your individual risk.
Consider whether there are any alternatives to public transport (car share with one other person) or whether you can travel at quieter times (or see Access to Work)
Ask your employer/HR dept. to run a session on supporting vulnerable colleagues, so all colleagues are aware of appropriate action to take.
Use social media/friends/other groups to find out what people in similar situations are doing
Speak to your union/ACAS about any worries
Explore whether the Access to Work fund could fund adjustments required to allow a safe return to work (e.g. special equipment or safe travel to and from work).
All businesses in England are encouraged to sign up to the government’s free workplace testing programme by 31 March, to help ensure people with Covid can isolate immediately and stop transmission. There is a scheme for high risk workplaces in Scotland and Wales.

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

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.

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

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

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

Benefits

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

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

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

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

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

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

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

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

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

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

Guidance – Direct Payments

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

Statutory Sick Pay

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

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

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

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

Furloughed worker scheme

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

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

unable to work because they are clinically extremely vulnerable, or at the highest risk of severe illness from coronavirus and following public health guidance
unable to work because they have caring responsibilities resulting from coronavirus (COVID-19), including employees that need to look after children
off on long term sick leave

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

Employers can:

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

Self-employed people

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

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

Support with finances

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

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

Travel

Travel for people on dialysis – dialysis away from your own unit. Please note that this advice is now under revision and we will update it when we can.

Dialysis away from base during the COVID-19 pandemic should be considered in the context of local and national rates of COVID-19. This guidance does not apply if shielding or a requirement for self-isolation is in place. We recommend that dialysis away from base (DAFB) should be discussed on an individualised basis between the patient and their clinical team using the principles stated below. Patients and clinical staff need to remain vigilant around any DAFB considerations as patients receiving dialysis are highly vulnerable if they sustain COVID-19 infection. This guidance applies to patients who are receiving haemodialysis and peritoneal dialysis. Modality specific advice is given where indicated.

This guidance is for people who are receiving haemodialysis or peritoneal dialysis. It comes from the joint professional and patient societies.

Assess based on the current incidence of COVID-19 in the base unit and locality and the designated unit/locality for DAFB. Information for locality specific rates can be accessed on the coronavirus section of the government website.
Patients should be advised not to travel if there has been close contact with an individual who has tested positive for COVID-19 and is following government guidelines for self-isolation, currently 14 days with no symptoms. More info on the NHS website
Patients who are receiving in centre or satellite unit haemodialysis should be advised not travel if there has been a COVID-19 infection within 14 days of any patient or staff member on the day of dialysis on the base unit or DAFB unit.
Patients should be advised not to travel if they have symptoms of COVID-19 or a swab has been taken for COVID-19 and the result is awaited.
If surgery is planned within two weeks then there should be no travel as patients will be asked to self-isolate for 14 days before the operation.
A COVID-19 swab should be undertaken within 7 days of travel. For travel to proceed this swab must be negative for COVID-19.
For patients receiving haemodialysis, ensure that there is a documented discussion between the clinical staff at the base unit and the DAFB centre for shared awareness of COVID-19 rates and confirmation of no recent COVID-19 infections in the base unit or receiving service. Ensure the patient is aware in advance of the local protocols that they will need to follow, e.g. wearing a mask, eating and drinking during dialysis.
For patients undergoing peritoneal dialysis follow local unit guidance and consider undertaking a risk assessment prior to travelling. Check availability of fluid deliveries and facilities at destination are suitable to carry out peritoneal dialysis safely.
For caravan dialysis ensure that the relevant guidance on hand hygiene, staff PPE and cleaning is followed as outlined in the recently published recommendations for minimising the risk of transmission of COVID-19 in UK adult haemodialysis units.
Follow the guidance for high risk individuals in the DAFB locality. This guidance is likely to vary with time.
On return, patients should dialyse in isolation for 14 days from date of return to the UK. Patients should have a negative COVID-19 swab before returning to their usual dialysis unit.
This advice applies irrespective of the DAFB type and destination.
Check what is covered by travel insurance in the event of an infection with COVID-19 just before or during the holiday.
The Foreign and Commonwealth Office (FCO) previously advised against all but essential international travel. The guidance has now been changed and travel is possible to countries which are assessed as no longer presenting an unacceptably high risk to British people travelling abroad. However, the FCO note that the pandemic is still ongoing and disruption is still possible.
More information about insurance coverage for cancelled trips can be found on the Association of British Insurers website.

Managing anxiety and fear and staying safe online

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

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

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

We have a page with some tips on managing your anxiety
The Government have published guidance on the mental health and wellbeing aspects of the Covid-19 outbreak, with some advice about what can help and where to get more help.
We also have a page on mindfulness colouring
You may also wish to look at the Every Mind Matters website
Headspace, a website and app which has meditation and mindfulness tools to help people cope with stress and sleeping problems, is offering a year’s free subscription to people who are unemployed.
NHS Grampian have produced Tips on how to cope if you are worried about Coronavirus and in isolation
Salford University have produced information to help people stay safe online during this outbreak. This includes spotting and avoiding scams and managing the amount and type of information you are accessing online.
Which has also produced helpful information on avoiding scams during the COVID-19 outbreak.

Volunteering support during the Covid-19 outbreak

NHS Volunteer Responders has been set up to enable people in England to volunteer to support the NHS during the Covid-19 outbreak. They are currently recruiting for volunteers in specific areas of England. You can contact them directly if you need help on 0808 196 3646 or through this link.

The Scottish Government is pointing people towards volunteering opportunities such as the Red Cross community reserves, or the Ready Scotland website.

People in Wales are urged to express their interest in volunteering through local authorities and register their services with Volunteering Wales.

We very much welcome the hundreds of thousands of volunteers who have come forward to support the NHS, social care and all key workers at this very challenging time. There are a range of volunteering opportunities which can provide direct help to people living with kidney disease, including providing vital patient transport services or a listening ear to people who are self-isolating. This help will make a huge difference to people facing a very difficult time.

For health professionals

The Renal Association provides a summary of key information for healthcare professionals

The Government in England has updated its information on guidance for adult social care to better protect the most vulnerable against Covid-19

NHS Inform has published guidance for Scotland

Advice for Northern Ireland is on the Public Health Agency website

NHS Wales has published guidance on NHS Direct Wales

Next in this section

Managing anxiety and fear

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

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

In this section

Managing anxiety and fear

Contents of this page:-

Recent updates

Summary

Where does this information come from?

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

Testing for Covid-19

What does the result mean?

What should I do if I have a negative test result?

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

I had coronavirus infection and my swab tests are still positive after at least two weeks – what does this mean?

Testing for people who do not have symptoms

Contact tracing

Financial support for self-isolation

Antibody testing

Long Covid and the Covid Recovery Service

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

Advice for the Clinically Vulnerable Group and people aged over 60

Advice for the Clinically Extremely Vulnerable Group

Which adults with kidney disease are clinically extremely vulnerable?

What is an inflammatory condition?

Covid-19 Population Risk Model

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

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

Support with shopping

Understanding and managing your risk

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

Risk within dialysis units

Leaving the house

Can I go outside at all?

Should I wear a face covering?

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

What about my monitoring and blood tests?

Can I go to the shop?

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

Is it safe to travel on public transport?

Should I let people in the house for emergency maintenance?

Is it safe to have a takeaway?

Can I go to the hairdresser/barber?

Can I go to the gym/play sports?

Going to school

Children with kidney disease and school

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

Covid-19 vaccinations

Antibody tests

Scams

Key points:

Early data about antibody response

Links to Covid-19 vaccine information from other organisations

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

Dialysis

I am on dialysis - am I at risk?

Personal protective equipment for people on dialysis

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

How will I get to dialysis?

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

Home dialysis supplies

Decisions about the provision of care

Carers/relatives

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

I have professional care staff coming into my home

What about children with kidney disease?

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

Extremely vulnerable patients

Women who are currently pregnant

Women who are considering a pregnancy

Transplantation

Outpatient appointments

Living donation

People on the transplant waiting list

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

Organ Donation opt-out plans

Other conditions

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

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?

I only have one kidney – am I at risk?