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:

Please join our second free Covid-19 Q&A webinar at 12.30pm on 28 September, this one is on Covid-19 and transplantation
New guidance has been announced for the UK nations, in response to the increase in Covid-19 cases.
At this time there is no re-introduction of advice to the clinically extremely vulnerable to shield, except in specific local lockdown areas (currently Leicester City and some of Blackburn/Darwen) where shielding patients will be contacted directly.
Local lockdowns continue to be introduced across the country, with different restrictions in place. You can check out what is going on in your area here.
The Renal Association also advises certain groups of kidney patients to shield.
The Government have re-introduced advice that people should work from home where they can and only travel to work if it is not possible to work from home.
In England, it will be a legal requirement to follow Covid-secure guidelines in retail, leisure, tourism and other sectors, with fines for failing to comply.
Face coverings will now be mandatory in England for staff in retail, taxi users, staff and customers in indoor hospitality (except when seated at a table to eat or drink).
The Government have published updated guidance on the mental health and wellbeing aspects of the Covid-19 outbreak.
NHS England has issued some updated guidance on patient transport, confirming that people on dialysis will continue to be prioritised for patient transport services.
The NHS Covid-19 App launched on 24 September 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. More information is on the NHS Covid-19 App website.
Scotland has a similar app that people are encouraged to download, called Protect Scotland, as does Northern Ireland, where it is the Stop Covid NI app.
The Government announced a Winter Economy Plan which extends financial support to some businesses and individuals who are not able to work as normal due to the Covid-19 outbreak. It does not currently offer support for clinically extremely vulnerable people who cannot return to work because their workplaces cannot be made Covid-safe. Kidney Care UK will continue to lobby for financial support for this group.
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 from 28 September, supported by payment of £500 for those on lower incomes who cannot work from home and have lost income as a result. You should contact your local council for more information about how to apply. There are fines for breaching the rules or for forcing someone else to breach self-isolation.
The Scottish Government are encouraging everyone who is clinically extremely vulnerable to sign up for their text messaging service. Through this service people that were shielding can receive alerts and updates straight to their mobile phones.

Summary

Do not leave your home if you or anyone in your household has Covid-19 symptoms.
Everyone should follow social distancing measures if you do go out. Everyone should work from home if you can, limit contact with other people, keep your distance if you go out (2m apart) and wash your 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’ depending on their stage of CKD and level of treatment.
People in the clinically extremely vulnerable group are at highest risk of very poor outcomes following Covid-19 infection and had been advised to follow shielding advice (also called self-isolation). The advice to shield has been paused across the UK although local lockdowns may include advice to shield.
Now advice to shield is paused, clinically extremely vulnerable people should follow the advice for the general population and carefully follow social distancing guidance.
People in the clinically vulnerable group should also carefully follow social distancing guidelines.
Shielding is pausing because infection rates in the community have fallen. If infection rates increase advice about what measures to take may change – this may be on a national or local basis.
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 self-isolate and stay at home for ten days if you live alone and your whole household should stay at home for 14 days if you share a home with other people. 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 or 14 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 extremely vulnerable group of patients and you develop symptoms of Covid-19 you should let your kidney doctor know. 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 and contact tracing

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 a limited number of 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 must self-isolate for 14 days.
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.

Contact tracing

Contact tracing is starting across the UK to stop the unknowing transmission of Covid-19. If you develop Covid-19 symptoms you should request a test and if it is positive, people with whom you’ve been in recent and close contact will be advised to self-isolate. Systems are slightly different in England, Wales, Northern Ireland and Scotland. People who are self-isolating because of symptoms or because they have been in contact with someone who tested positive will be eligible for statutory sick pay.

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 14 days. A “close contact” is anyone who was within a 2 metre distance of you 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.

More information is on the NHS Covid-19 website.

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

The StopCovid app for the Northern Ireland is explained here

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.

It can take up to 14 days to get 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.

If you are advised by NHS “Test and Trace” that you are a close contact of a case of Covid-19:

You must self-isolate at home for 14 days since contact.

You must inform your kidney unit immediately if:

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.
You may need a Coronavirus swab test
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.
If your test is positive, you need to self-isolate for at least 10 days.
If your test is negative, you need to continue to self-isolate for 14 days.
If you develop new symptoms after a negative swab, you need to be tested again.

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.
Tests are likely to be possible on the NHS in your area very soon.
It is best to talk to your kidney team as they may be able to arrange for you to have an antibody test.

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. 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.

The Parliamentary Science and Technology Select Committee heard from Professor Donal O’Donoghue, kidney doctor and 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.

In normal times about one in five people admitted to hospital each year as an emergency has 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 Committee meeting is reported in The Guardian.

Earlier in the pandemic there were many concerns about there being enough resources available to treat people who developed AKI because of Covid-19. This did not affect existing dialysis patients. Covid-19 patients with AKI were managed in intensive care units following a heroic joint effort between Intensive Care and Renal healthcare teams and by improving the supply chains. Great care is needed to detect and manage AKI and we encourage everyone to learn how to keep your kidneys safe.

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

This depends on how vulnerable you are to Covid-19. 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 is new guidance is being introduced in each UK nation regarding how many people can meet up and where they can meet. There are certain exceptions such as work or schools, or for childcare or caring reasons. Recent changes include that in Northern Ireland you must not meet inside anyone’s house with people from outside your own household. In a private garden, only two households can meet and this must be only up to 6 people (under 12s excepted). In England, the numbers of people who can meet together indoors or outside is restricted to 6. In Wales, increased local lockdowns are in place and more restrictions may be introduced if necessary. New measures have just been announced in Scotland also banning household visits.

The details of the rules vary slightly between each country and more information is available on each nation’s government websites:

England: full guidance on staying at home and away from others and meeting up with others safely (which explains the new rule of meeting no more than 6 people) and there is also a set of questions and answers.

Wales: staying at home and social distancing guidance

Scotland: staying at home and social distancing guidance

Northern Ireland: staying at home and social distancing guidance

People with moderate to advanced (stage 3+) chronic kidney disease are at greater risk from severe complications from coronavirus (Covid-19). 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.

As well as following rules for the whole population, people 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.

These strict social distancing measures also apply to anyone over 70, those who are pregnant, and anyone under 70 with specific underlying health conditions (i.e. anyone advised to get a flu jab as an adult each year on medical grounds).

People in the Clinically Extremely Vulnerable Group are at highest risk of becoming very unwell or dying if they catch Covid-19. They include those who have had a transplant, are on dialysis or take a certain level of immunosuppressive medicines. This group had been advised to strictly self-isolate (also known as shielding) but advice to shield has now paused across the UK and clinically extremely vulnerable people should follow the same advice as the general population (although see advice below for certain groups). More information about the pausing of shielding advice is available in our guidance. Local lockdowns may include advice to continue to shield.

Although shielding is now paused across the UK, except for certain local lockdown areas, 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 to do so. People on the transplant waiting list should speak to their kidney doctor about whether it is advisable for them to continue to shield. Exact details of local advice may differ according to local prevalence so local transplanting units should be consulted.

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.

There is also some helpful specific guidance produced for people living in Scotland, who have chronic kidney disease, with information on how Covid-19 might affect them and what action they should take. This includes staying safe with daily activities. The Scottish government is not advising people to return to the shielding advice that was issued in March. Those who were previously advised to shield are advised to continue following the advice for the general public and to be particularly careful in following FACTS guidance, which you can access in different languages and BSL on the Scottish Government website

Which people with kidney disease were advised to shield?

You are at very high risk and in the clinically extremely vulnerable group (and should have been advised to shield) if you are in at least one of the groups listed below. Although shielding is now paused across the UK, except for certain local lockdown areas, the Renal Association recommends that patients within the first three months of a kidney transplant should continue to follow full shielding. People on the transplant waiting list should speak to their kidney doctor about whether it is advisable for them to continue to shield.

You have a transplant
You are on dialysis
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 are currently receiving intravenous cyclophosphamide treatment or rituximab treatment or have done so within the last 6 months
If you are receiving cyclophosphamide treatment as tablets (oral treatment)
If you have received prednisolone at a dose equal to or above 20mg tablets every day for more than 4 weeks any time within the last 6 months
If you have received or currently are receiving more than 5mg every day of prednisolone for more than 4 weeks taken with at least one other immunosuppressive type of medicine within the last 6 months. If you are not sure if the other medicines you have taken are of this type, please check with your doctor or check below.
If you suffer with nephrotic syndrome (sometimes described as protein leaky kidneys, usually due to minimal change disease, FSGS or membranous nephropathy) and are currently nephrotic (i.e. your protein leak is high/your ankles are swollen) or you have had more than one nephrotic (protein leaky) attack needing drug treatment during the last 6 months.
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).

What are immunosuppressive medicines?

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

Guidance and support for people who were advised to self-isolate/shield

Government advice for people who are in the clinically extremely vulnerable group to shield has paused. There are parts of the country where infection levels have gone up so this advice may not apply where local lockdowns are in place. You will be contacted if advice regarding shielding changes because infection rates are increasing in your local area.

Why is advice to people who are shielding changing?

Although people who are in the clinically extremely vulnerable group are still at risk of severe disease if they catch Covid-19, there is now a much lower risk of catching Covid-19 in the community. This is because there are fewer people with Covid-19 and so the risk of catching coronavirus has reduced.

The main changes to shielding advice that have come into effect for each country are listed below, along with links to detailed information about shielding in each country. Please note, the Renal Association also advises certain groups of kidney patients to shield.

England:

The shielding guidance for England is paused from 1 August. From that date, people who had been advised to shield should start to follow the guidance for the general population and be careful to socially distance. Detailed guidance is available on the Government website.

There is specific guidance on what will happen if there is a local lockdown in your area.

Wales

The shielding guidance for Wales paused from 16 August. People who had been advised to shield should follow the same rules as the rest of the population in Wales.

Further guidance, including frequently asked questions, is on the Welsh Government website

Videos of the Chief Medical Officer answering questions from the public will be published on Welsh Government social media channels (Twitter and Facebook) during the week starting 17 August.

Northern Ireland

Advice to shield has paused in Northern Ireland from 31 July. Further information on pausing shielding is available on the NI direct services website.

Scotland

The Scottish Government paused shielding from 1 August. They have provided this information to support you.

The Scottish Government are sent letters to people with organ transplants and people on dialysis with more information about changes to shielding.

What if infection rates increase again after shielding has paused?

The Shielded Patient lists will be maintained and if the risk of catching Covid-19 increases because the virus is spreading more quickly, people on the list will be contacted and advised to begin shielding again.

There is specific guidance on what will happen if there is a local lockdown in your area.

What should you do if you have been shielding and have someone else living with you?

Other members of your household were not required to shield themselves, but should continue to stringently follow guidance on social distancing and you should all maintain thorough cleaning of frequently touched areas in your home.

Support with shopping after shielding has paused

The government foodboxes have stopped now that shielding has paused in each of the UK countries, but priority supermarket online delivery slots will continue for people who had previously been shielding.

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. Some have made delivery services available for locals.

Try asking community groups if they know of any or check these websites: localfooddrops.co.uk and wedeliverlocal.co.uk.

What other support is available?

England: you can access support from local voluntary groups such as Covid Mutual Aid UK or your local authority. NHS Volunteers are also still available for people who are having to self-isolate for any reason.

Scotland: you should visit the Scottish Government Covid-19 support page. 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.

Wales: if you need support and you do not have friends, family or neighbours to help you, you should contact your local council or voluntary organisation. 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.

The National Volunteer Prescription Delivery Scheme will be available until the end of September. Please speak to your pharmacy about this scheme.

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).

You may also be able to find help through local support groups or your local authority.

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.

What support will be available if the Government re-introduces advice to shield again?

If you are advised to follow shielding guidance again, you will be able to access free medicine delivery as you were at the start of the pandemic. You will continue to have access to priority supermarket delivery slots. If you need additional support, such as help to access food, you should contact your local authority who can advise you further.

Support with returning to the workplace once shielding has paused.

Please see the section on employment for specific advice.

Local lockdowns

The Government have introduced new measures to deal with local lockdowns in response to local outbreaks, including giving local authorities powers to close specific premises and cancel events. You can see what the restrictions are in your local area using this tool from Sky News.

As increases in the rates of infection are identified in particular areas, specific rules limiting activity and meeting up with others are being introduced.

Depending on the severity of the outbreak, clinically extremely vulnerable people living in local lockdown areas may be asked to shield again. If this happens and you have previously been shielding, you should receive a text to let you know. You should then receive a letter outlining more information, which will also act as evidence to give your employers so you can receive statutory sick pay. We have been advised that medication deliveries will remain place in these areas and that priority supermarket slots are still available. Shielding is not necessarily being introduced in local lockdown areas, with those decisions being made by local authorities.

The advice regarding local lockdowns is changing regularly and your local council as well as the following websites for each UK nation are the best place to keep an eye on.

Government webpage with local lockdown information for England.

Government webpage with local lockdown information for Scotland.

Government webpage with local lockdown information for Northern Ireland

Government webpage with local lockdown information for Wales

What should I do if I work in a lockdown area but do not live there?

If you are clinically extremely vulnerable and live in an area where shielding has paused but work inside an area where shielding is in place, you should email [email protected], explaining that you live outside but work inside an area where shielding is in place locally, giving your name, address, date of birth, your NHS number (this will be on your previous shielding notification letters) the location where you work. You will be issued with a shielding notification letter if eligible, which may be required if you are entitled to claim Statutory Sick Pay.

Understanding and managing your risk now that shielding has paused

Advice to shield has now paused for the Clinically Extremely Vulnerable group in many parts of the country, although there may be variations in advice locally. This is because the risk of contracting Covid-19 in the community has reduced. Many people with kidney disease will be used to making decisions about risk and will now be making choices about getting back to their usual activities based on their own circumstances, for example ease of access to quiet outdoors areas or whether they need to work outside the home. Some people will welcome the change of advice and others may be nervous.

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 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.

For people who are in the extremely vulnerable group who decide to go outside, 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

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 or having had a kidney transplant 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 at the moment, these are not very detailed so these are not very useful for people on dialysis or with a transplant. Some risk calculators do include kidney disease in general but these still may not help people who are on dialysis or who have a transplant to accurately estimate their risk. This is because the risk in people with early kidney disease (which is very common) is lower than for people with advanced kidney disease and who are on dialysis or with a transplant (which are both much less common).

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

Medical colleagues have developed a grid 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 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.

Another tool is being developed by a team at Oxford University which will help predict a person’s risk from Covid-19. It is for the whole population, not just kidney patients, and could be used to inform decisions about whether people should start to shield again (should infection rates increase) or who should be first to receive the vaccine (based on who is at highest risk).

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.

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 once shielding has paused

People who receive dialysis within a unit may be concerned that their risk is increased by other patients within the Unit who are relaxing shielding to a greater extent. Renal teams are having conversations with all patients about how to stay as safe as possible. They are talking to people about what they need to do to keep their own risk as low as possible and also what everyone needs to do to help to keep each other safe as well.

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.

Leaving the house

Can I go outside at all?

It is possible to go outside and meet up with a limited number of people from outside your own household, whilst maintaining social distancing. As infection rates are rising new rules are being introduced across the UK regarding how many people can meet in any setting, indoors or outdoors. See individual guidance for each UK country and also the exceptions to those rules (e.g work or schools).

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).

You may be considering wearing a face mask or face covering when leaving the house. 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 UK Governments have concluded that, while physical distancing, hand washing and respiratory hygiene are the most important and effective measures to prevent the spread of coronavirus, there may be some benefit in wearing a facial covering in certain circumstances where physical distancing is difficult (e.g. public transport).

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 across the UK. This includes many public transport premises, although the rules vary slightly across the UK so do check if you are unsure.
In shops across the UK, although the type of business that this covers varies, so do check local guidance.
Hospital outpatients in England should also wear face coverings and will be issued with masks if they do not bring their own. Hospital staff are required to wear surgical masks at all times in England.

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

Can I go to the shop?

If you have been told to self-isolate or advised to shield you will need to ask a friend, family or neighbour to get your shopping items. We recommend you discuss your daily needs during this period of staying at home with carers, family, friends, neighbours, NHS Volunteers or Covid-19 Mutual Aid group, local community groups, or Community NI in Northern Ireland, to see how they can support you.

If you have not been advised to self-isolate 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 or your local authority.

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

Advice that clinically extremely vulnerable people should shield has now paused, except for certain local lockdown areas. In practice, that means that you should stay home as much as possible, but you can go out, including to shops, pubs and restaurants, providing you take particular care to wear a mask, maintain social distancing and always robustly practise good, frequent hand washing. There are limits on the numbers of people you will be able to meet with in these venues.

Is it safe to travel on public transport?

The risks of travelling on public transport are significant. At present, our Renal Association colleagues advise that clinically extremely vulnerable patients should avoid all non-essential travel on public transport.

If you have to travel to work, it is probably best if you can use an alternative to public transport. However, if you cannot 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.

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?

Now that shielding has paused across the UK with the exception of local lockdown areas, you’ll be able to visit your hairdresser/barber. If your hairdresser/barber is able to offer you an appointment without other customers present, this is advisable. You could also wear a mask.

Can I go to the gym/play sports?

Now that shielding has paused, with the exception of local lockdown areas, you may visit the gym. Please keep socially distanced from other 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

Schools have now reopened. More guidance is available on schools reopening in Scotland, Wales, England and Northern Ireland.

Children with kidney disease and school

Now that the advice to shield has paused across the UK, apart from in local lockdown areas, 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).

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

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

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

There is no clear-cut answer to this. 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.

Younger 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 should 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.

I am in the clinically extremely vulnerable group and have children who go to school. Is it safe for me to get close to them?

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. You can minimise risk of transmission by taking the measures described above.

If you have any concerns, it is important that you speak to the school about the measures they are taking to reduce the risk of transmitting the virus. If you need to make any adjustments, or you would like the school to do so, then you can discuss with the school.

School opening during local lockdowns

The Government has published guidance for schools to help them make plans in case of a lockdown in their local area. It is expected that in most cases schools will remain fully open to all if local lockdowns are introduced with risk-reducing measures introduced such as a requirement to wear face coverings. In exceptional circumstances, restrictions to the opening of schools may be introduced and the guidance explains how this could work in practice.

School children and face coverings

The Government has published guidance about face coverings in educational settings. They are not introducing a nationwide recommendation that schoolchildren should wear face coverings, because of the other measures in place that reduce risk. However, 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.

Dialysis

Kidney Care UK, the Renal Association, the British Renal Society and the Association of Nephrology Nurses UK recently held a webinar about covid19 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.

We understand that because of the huge demand, it can be difficult to make enough face masks available. However, kidney patients need and deserve all the support there is to help keep them safe and keep them well. We will continue to call for the UK government to make sure the right equipment is available and Kidney Care UK has written to Chief Executives of hospital trusts with the same request.

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

The Renal Association, with the Renal Nutrition Group, have published new guidance on eating and drinking during hospital or unit based haemodialysis. 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 these unprecedented times, providing transport to and from dialysis is a particular challenge. If it is possible (without exposing them to Covid-19) for a member of your household, family member or friend to take you to dialysis that could reduce pressure on transport services. Units will of course continue to provide transport where essential.

On 30 March NHS England issued new guidance on transport stating that people going to dialysis must be treated as a priority group. Further guidance has been issued at the end of September. It states that whilst the national shielding programme was paused on 1 August, 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.

We are awaiting a link to this updated guidance. In Wales, Non-Emergency Patient Transport Service (NEPTS) will continue. For all dialysis patients who do not have any symptoms of Covid-19, NEPTS are introducing a range of measures to enable patients to be separated from each other as much as possible, including limiting the number of people in ambulances. Car travel (taxis, volunteers) will be limited to one patient.

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. The scheme will be kept under constant review so it can be adapted as necessary to ensure that all dialysis patients in Wales can receive their dialysis safely.

For those who do not wish to join or are unable to join, please be reassured that transport will still be provided by NEPTs. However be prepared, there may be delays as the pressure on service increases and many patients have reported benefits to the transport re-imbursement scheme including reduced travel time.

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.

To respond to concerns, suppliers of dialysis supplies have developed new guidance for drivers, whereby 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 new 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. We very much hope the new guidelines will bring an end to any problems.

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.

The Government have published Guidance for those who provide unpaid care to friends or family.

What is the advice for informal carers?

If you are caring for someone who is vulnerable, there are some simple steps that you can take to protect them and to reduce their risk at the current time. Ensure you follow advice on good hygiene such as:

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.

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 produced new guidance (updated August 2020) on children with kidney disease and Covid-19, based on what we are learning about how the disease affects children. A full version is available on their website. 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 over the summer 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.

Ongoing-COVID19-advice-infographic-20082020.pdf

The Royal College for Paediatric and Child Health has produced this advice for families during the pandemic (PDF) which gives general advice on how and when to seek help if your child becomes unwell during the Covid-19 outbreak.

The National Institute for Health and Social Care has issued some new 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.

Transplantation

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

At present, centres are reacting to their own local resource issues and the wishes of donors and recipients. Centres had closed their living donor programmes due to concerns about the risk of Covid-19 in both donors and recipients, but are now being encouraged to start to reopen, where it is safe to do so. This is happening slowly and you will be contacted by your unit. In London, the NHS has collaborated with the independent sector, so that living donations are taking place in independent hospitals which have not seen any Covid-19 cases.

It has been confirmed that the Living Kidney Sharing Scheme will run in October.

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

People on the transplant waiting list

As a result of the Covid-19 outbreak and the huge demand it placed on the NHS, many kidney transplant centres had to take the difficult decision to close their kidney transplant programmes due to local concerns about access to emergency theatres or critical care beds and risks of Covid-19 to their patients. Encouragingly, most units have re-opened. You can see which centres are open, and your unit should let you know about the plan for you. You will be advised of the need to self-isolate for 14 days before a planned transplant, and receive advice about risks and precautions to take, as in this NICE guidance.

NICE (the National Institute for Health and Social care Excellence) has issued new advice for those caring for people waiting for or living with transplants and on living donation. This presents the recommended approaches for safe transplantation and for people with transplants to continue to receive care. Kidney Care UK contributed to the consultation on this important topic. For deceased donation, all organ donors will be assessed in line with advice from NHSBT.

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.

The Scottish Government announced last year that the Human Tissue (Authorisation)(Scotland)Act 2019 which will introduce an opt-out system of organ and tissue donation would come into force in Autumn 2020.

As a result of the coronavirus pandemic, Scottish Ministers have taken the decision to pause a number of programmes including implementation of the opt out legislation, which will now be implemented in March 2021. This has meant that the training for NHS staff and the public awareness campaign has been postponed. This is necessary to allow the NHS to concentrate their efforts on prioritising the response to the pandemic.

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 (e.g. you have to return to work and cannot work from home) we recommend that you, those who you live with 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, who are advised to shield or work from home where possible, 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.

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, effect 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, 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 currently working with renal units to support them to plan how they are responding to the Covid-19 infection. To help with this they have applied to the confidentiality advisory group (CAG) to grant permission to link to other data-sources. For example, to link together some of the national databases (like the Public Health England (PHE) list of people with a positive Covid-19 result, or the hospital episode statistics (HES)) to the UKRR list of kidney patients to allow them to report on how the virus has affected kidney patients in the UK.

The UKRR have used this data to understand how Covid-19 is affecting kidney patients. It found the rate of infection was similar to the general population. Sadly, it has confirmed that people with kidney disease who are receiving haemodialysis in a hospital or unit are more at risk of worse outcomes from Covid-19 than the general population. People from Black or South Asian groups have a higher rate of infection compared to those of white ethnicity but there is currently no significant difference in outcomes.

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. There is not enough information available yet to draw any conclusions about the risk in people with transplants. There are very few accounts of Covid-19 in children. 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 will give a greater understanding for 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.

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

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.

Vaccinations for Covid-19 and antibodies

There are a number of research studies looking into potential vaccines for the Covid-19 virus. The Government announced preliminary advice from the specialist vaccine committee that people with chronic kidney disease and with organ transplants should be in the highest priority group to receive a vaccine (after health and social care workers at increased risk of exposure), once a safe and effective vaccine is available.

While kidney patients will be offered the COVID-19 vaccine, to date they have not been included in the trials for the vaccine so we need to understand firstly whether patients will react in the same way. So once it comes out, it is recommended that you have the vaccine and then your doctors will monitor how you respond to it.

Winter Flu vaccination programme

It is highly recommended that kidney patients have a flu vaccination to avoid seasonal flu. The winter flu vaccination programme includes

People who were on the shielding list and their households
All school year groups up to Year 7
People aged over 65, pregnant women, those with pre-existing conditions including at-risk under 2s
People aged 50 - 64 later in the year

The NHS will contact people directly, including information about where to go to get the vaccine.

Employment and benefits

Employment for the shielding group following a pause in shielding

Each UK country’s website for people shielding has advice about employment once shielding is paused: Northern Ireland, Wales, England, Scotland

Although people who had been shielding were encouraged to go back to work if the workplace could be made Covid-secure, on 22nd September Boris Johnson announced that in England the advice to the whole population was now to continue to work from home if you can. The advice that everyone who can work from home should continue to do so also applies in Wales, Northern Ireland and Scotland.

In addition, although shielding is now paused across the UK, except for certain local lockdown areas, the Renal Association recommends that patients within the first three months of a kidney transplant should continue to follow full shielding despite the changing government advice. Exact details of local advice may differ according to local prevalence so local transplanting units should be consulted. Unfortunately, there is currently no Government guidance on support available for people who are advised to continue to shield by their clinician. Kidney Care UK and colleagues are campaigning for financial and other support to be available for this group and will update the guidance as new information becomes available. We recently joined other charities to campaign for a furlough-type scheme for high risk workers, which extends beyond October, and this work continues as Parliament returns in September.

Kidney Care UK has prepared information to review with your employer if you are in England, and if you are in Wales. 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.

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
Consider whether there are any alternatives to public transport (car share with one other person) or whether you can travel at quieter times
Ask your employer/HR dept to run a session on supporting vulnerable colleagues, so all colleagues are aware of appropriate action to take.
Use social media/friends/other groups to find out what people in similar situations are doing
Speak to your union/ACAS about any worries
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).

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

We recommend early discussions with your employer about returning to work, if you cannot work from home. The majority of employers will want to support their employees and keep them safe.

It is important that clinically extremely vulnerable people continue to take careful precautions once shielding is paused, and employers should do all they can to enable them to work from home where this is possible, including moving them to another role if required.

Where working from home is not possible, those who have been shielding should be provided with the safest onsite roles that enable them to maintain social distancing. The Government guidance for each UK nation explains how to ensure a workplace is COVID-safe. It covers different workplaces (e.g. factory, office) to help an employer in its risk assessment responsibilities. The Health and Safety Executive have provided practical information on how to make work and the workplace safe.

If employers cannot provide a safe working environment, they can continue to use the Job Retention Scheme (furloughing) for shielded employees who have already been furloughed. This scheme will be in place until October. Statutory sick pay for people who had been advised to shield will no longer be available now shielding is paused, except in some local lockdown areas. Statutory sick pay will be available for people who have been told they must self isolate because they or a close contact have developed symptoms of Covid-19.

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

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.

PIP and ESA reviews and reassessments are suspended until further notice, while the DWP review what activity it can restart whilst complying with public health guidance. All disability benefit awards will be automatically extended at the current rate to provide reassurance to those in receipt of them. If people’s needs change they are still encouraged to contact the DWP to make sure they are getting the right level of support.

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. People who had been advised to shield were also currently eligible for SSP, but came to an end once shielding paused.

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, supported by a payment of £500 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 Scheme (furlough scheme)provides funding for a proportion of an employees’ wages (up to £2,500 a month) if a business was forced to close temporarily because of Covid-19. This is to enable employers to retain employees during this outbreak. Employers can also furlough people who have stay at home because they are shielding. 10th June 2020 was the last date on which people can be furloughed for the first time.

The Government extended the scheme to the end of October 2020 and also enabled people to go back to work part time, with employers asked to contribute towards their salaries. The employer payments will substitute the contribution the government is currently making, ensuring that staff continue to receive 80% of their salary, up to £2,500 a month.

Kidney Care UK has asked the Government to extend furlough for those for whom it is not yet safe to go back to work.

On 22 September, the Government announced a Winter Economy Plan which extends financial support to some businesses and individuals who are not able to work as normal due to the Covid-19 outbreak. It does not currently offer support for clinically extremely vulnerable people who cannot return to work because their workplaces cannot be made Covid-safe. Kidney Care UK will continue to lobby for financial support for this group.

Self-employed people

On 26 March the Government announced a scheme to support those who are self-employed whose business is affected by Covid-19. This includes a grant available which will provide up to 80% of the individual’s average monthly income up to £2,500 per month. Recipients must have a completed tax return for 2019. It will be available from early June.

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

For more information and to understand the terms and conditions, as well as other support available, please see the Government page on the Self-employment Income Support Scheme.

Support for carers

Although people have to a right to time off work to care for a dependent, currently there is no statutory right to pay for those carers, unless those carers are self-isolating because a member of their household (or themselves) have symptoms of Covid-19.

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.

Guidance from 17 July

With the decrease in the number of individuals with COVID-19 in the UK and the changes in national guidance including lifting of lockdown and a focus on individualised risk assessment, a guidance statement has been prepared on dialysis away from base (DAFB). This guidance does not apply if shielding or a requirement for self-isolation is in place. It comes from the joint professional and patient societies.

Recognising the benefits to those on dialysis and their families, units are encouraged to consider how and when to restart DAFB, in line with local policies and an assessment of the risks. 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 as patients receiving dialysis are highly vulnerable if they sustain COVID-19 infection.

This guidance is for people who are receiving haemodialysis or peritoneal dialysis.

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 Associate 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. You can contact them directly if you need help on 0808 196 3646 or through the 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 in the UK

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

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