Updated 3 July
Government guidance may change in the coming weeks. Please refer back to this page as we will try to regularly update it in response to any developments. Because we’re regularly updating the guidance, if you want to share it please link to the page directly rather than quoting or summarising what we’ve said. If the page is not updating for you trying clearing your cache/cookies and/or viewing it in incognito mode for your browser.
Do keep looking at this website daily and your question may be answered without needing to speak to your kidney specialist. However, if you still have questions then do get in touch with your hospital team or GP.
We'll also be sending email updates about the situation. If you haven't already signed up to hear the latest news and information from us you can do so on our sign-up page.
Contents of this page:-
- Recent updates
- What should I do if I have symptoms of COVID-19?
- No one in my household has symptoms - what should I be doing?
- Which people with kidney disease are advised to self-isolate/shield?
- Guidance and support is available for people who must self-isolate
- Chronic kidney disease (CKD)
- Acute Kidney Injury (AKI)
- Leaving the house
- Children with kidney disease
- Other conditions
- Your data and research
- Employment and benefits
- Managing anxiety and fear
- Health professionals
- Guidance for people who live in Leicester and are shielding is that they should not follow the national relaxation of shielding on 6 July. They should continue to shield at present as there has been an increase in Covid-19 infection in the area. There is more information on the Leicester City Council website. Everybody in Leicester who is on the shielding list will receive a text message today and a letter from Monday. This will tell you where you can access support if you need it. The shielding letter you had on the 22 June will continue to act as evidence for employers to show that individuals shielding cannot work outside the home until 31 July, including for statutory sick pay purposes.
- The Scottish Government have announced some updates to the COVID-19 guidance. The 2m distancing rule will remain in place, although in specific sectors from 10 July a 1m distance rule could be used if other measures are in place (e.g a plastic screen between customers). Face masks will be mandatory in shops from 10 July . From 3 July, the physical distancing rule will no longer apply to children under 12 playing outside.
- The Scottish Government also released confirmation that they support the recent Royal College of Paediatrics and Child Health guidance regarding which children (under 18 years of age) should continue to shield. Before a child is advised in writing that they no longer need to shield a discussion must take place between the child, their family and their clinician.
- As the rules regarding travel around the UK and advice to people shielding is due to change over the coming months, Kidney Care UK are in discussions with kidney specialists with regard to when dialysis away from base may restart. We will update this guidance with more information as soon as we have it.
- The three-month suspension of PIP and ESA reviews and reassessments will be extended while the Department for Work and Pension review what activity it can safely restart.
- More information has been published about the re-opening of the kidney transplant programme.
- 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.
- Do not leave your home if you or anyone in your household has COVID-19 symptoms.
- Lockdown measures in the UK are easing for many but everyone should follow social distancing measures if you do go out. Everyone should stay at home as much as possible, 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.
- Some people with kidney disease who are extremely vulnerable to Covid-19 infection are also advised to follow the shielding advice (also called self-isolation).
- If you have CKD but are not judged to be extremely vulnerable then you should stringently follow social distancing guidelines.
- It is important to seek support while 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.
What should I do if I have symptoms of COVID-19?
If you have either:
- a high temperature (over 37.8 degrees)
- or a new continuous cough
- A loss of change in your normal taste of smell or taste.
Then you should self-isolate and stay at home for seven 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 seven or 14 days of isolation you feel your symptoms are worsening or 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. You should also try to find somewhere else to stay for 14 days. If you cannot stay elsewhere then you should try to stay away from the person with symptoms.
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 in experiencing a new, continuous cough, high temperature or a loss of 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 7 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 2 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 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.
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 - even if you feel well, you must follow instructions 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 may need a Coronavirus swab test
- You have a planned hospital appointment within 14 days
- Your appointment should be done by phone or in isolation conditions.
- If you develop symptoms, contact NHS 111 online coronavirus service to arrange for a swab test, or phone 119 if you cannot use the online service.
- If your test is positive, you need to self-isolate for at least 7 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.
An antibody test is a blood test either from your vein or finger-prick. It tests if your immune system is making proteins (antibodies) to fight the Coronavirus. Antibodies usually develop about 7-14 days after infection starts. They 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.
No-one in my household has symptoms - what should I be doing?
This depends on how vulnerable you are to COVID-19. 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. Gradually people are being advised that they can meet up outside, using social distancing. 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 there is also a set of questions and answers.This guidance is changing on 4th July; the 2m social distancing guidance will change so that while people should keep to 2m if possible, if they cannot then they should keep to at least 1m distance from others while also taking action to reduce infection (for example facing away from people or installing a screen in a workplace); two households will be able to meet up in any setting, including overnight with social distancing; holiday accommodation in England will be allow to open; and many leisure facilities will be able to reopen. Until 4th July the current social distancing rules apply. More information about the changes to guidance are on the government website.
Wales: staying at home and social distancing guidance This guidance is changing from Wednesday 6th July. Two households will be able to join together to form an extended household, which means they can meet indoors and stay overnight. This can include people who are advised to shield if they want to consider this option, although it is acknowledged that it will increase the risk of infection. In addition:
- People will only be able to be part of one extended household.
- Everyone joining the extended household must belong to the two households, which form the extended household.
- The extended household must contain the same individuals for the foreseeable future.
- If one member of an extended household develops symptoms of coronavirus, the entire extended household will need to self-isolate, not just those living together.
- It will be important for the extended household to keep records to help with contact tracing in case someone in the extended households tests positive for coronavirus.
Northern Ireland: staying at home and social distancing guidance
In addition to these rules, people with moderate to advanced chronic kidney disease (CKD) may be more vulnerable to COVID-19 and 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 instructed to get a flu jab as an adult each year on medical grounds).
There is also a smaller group of people who are extremely vulnerable to COVID-19 who are advised to strictly self-isolate (also known as shielding). This was initially for 12 weeks, although in England and Northern Ireland this period has been extended until the end of July, with some changes coming in from 6th July. Advice that the clinically extremely vulnerable group should shield will be paused in England and Northern Ireland from 1st August. Advice to shield is in place in Scotland until 31 July. In Wales people are advised to continue to shield beyond the original end date of 15 June and you will be written to with further advice by 16 August.
People advised to shield include those who have had a transplant, are on dialysis or take a certain level of immunosuppressive medicines. You should receive notification from your renal team or GP to do so if you have not already. This extremely vulnerable group also includes people with certain other serious medical conditions or whose overall health puts them at risk, so it may be that you have to self-isolate even if you have not had a transplant, are on dialysis, or do not take immunosuppressants. You will be written to if this is the case or your hospital clinician or GP will tell you that you are in this group, or you can check the government guidance on shielding and protecting people defined on medical grounds as extremely vulnerable from COVID-19. GPs and hospital doctors are continuing to review their lists to identify vulnerable people. However, you do not need to wait for a letter to start shielding yourself. If you think you are in one of the very high-risk groups then you are advised to start shielding yourself from face-to-face contact. If you are in England, you should register online even if you do not need additional support so that the Government knows how many people are shielding.
There is also 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.
Which people with kidney disease are advised to self-isolate/shield?
You are at very high risk and are advised to self-isolate (sometimes known as shielding) yourself if you are in at least one of the following groups:
- 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 greater 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.
Communications regarding no longer being advised to shield
You may have seen media reports of people receiving a text message to say that, with immediate effect, they are no longer advised to shield. These messages have been sent because there are a number of patients who are being identified by their clinicians as no longer needing to be on the clinically extremely vulnerable group. This is because we are learning about the COVID-19 virus all the time and how it affects particular people.
The Department of Health and Social Care confirmed that clinicians do have the authority to remove or add people to the group advised to shield, but that people should not have received the text before their clinician had spoken to them. This does not affect people with kidney disease as a group, but individuals may receive a text or information from their clinician. Please speak to your clinician if you are told you are no longer advised to shield and you have questions.
People who are informed they are no longer advised to shield will still retain their supermarket priority delivery slot if they have one and access support from volunteer groups such as NHS Volunteers, but they will no longer be eligible for the Government food boxes.
Guidance and support for people who are advised to self-isolate/shield
Government advice for people who are advised to shield is changing and people can start to leave their homes to spend time outdoors, with exact guidance varying slightly between UK countries. This is because there are fewer people with coronavirus and so the risk of catching coronavirus outdoors has reduced. It is of course your own choice. People who are shielding remain vulnerable and are strongly advised to stay at home as much as possible and keep time outside to a minimum (for instance once per day), and stringently follow social distancing guidance.
Why is advice to people who are shielding changing?
Although people who are advised to shield 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. The Government have explained that in England on average less than 1 in 1,700 in our communities are estimated to have the virus, down from 1 in 500 four weeks ago. The estimate of COVID-19 prevalence in Wales is 1 person in every 10,000. There is also much lower risk of catching COVID-19 if you are outdoors, which is why the changes start with recommending you can meet up with other people out of doors.
Apart from going outdoors, the remainder of the shielding advice remains in place. This means:
- Do not attend any gatherings. This includes gatherings of friends and families in private spaces for example family homes, weddings and religious services.
- Do not go out for shopping and, when arranging food or medication deliveries, these should be left at the door to minimise contact.
- You should not attend work outside of home.
- People you share a household with should follow strict social distancing measures.
For all people who are in the extremely vulnerable group who decide to go outside, it is 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.
- If you live alone and meet someone from outside your household, it should ideally be the same person each time.
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 tissue when you cough or sneeze. Then dispose of tissue straight away and wash your hands.
It is of course a personal choice whether you spend time outdoors away from home and people will make decisions based on their own circumstances, for example ease of access to quiet outdoors areas. 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 can have for your physical and mental health. Kidney Care UK is working with kidney doctors to produce information specific to kidney patients who are shielding. We will publish this as soon as available.
The shielding guidance for England changed on 1 June:
- Those who have been shielding at home are now able to leave home to spend time outdoors with members of your own household or, if you live alone, meet outside with one person from another household, while maintaining social distancing.
The Government has extended the period during which they advise clinically extremely vulnerable people in England to shield to 31st July 2020.
The current guidance for people in England who are advised to shield until that date is changing from 6 July. From that date:
- You may, if you wish, meet in a group of up to 6 people outdoors (you and five other people), including people from different households, while maintaining strict social distancing. This includes in private gardens or uncovered yard or terrace, as well as in public outdoor space;
- You no longer need to observe social distancing with other members of your household;
- Adults who are shielding and live alone (or with household members who are under 18) may, if they wish, form a ‘support bubble’ with one other household. All those in a support bubble will be able to spend time together inside each other's homes, including overnight, without needing to socially distance;
- All the other current shielding advice will remain unchanged at this time.
The shielding guidance for England is changing again from 1 August, as follows:
- The advice to shield will be ‘paused’ from 1st August. From that date, people who are currently advised to shield should start to follow the guidance to stringently socially distance. This is similar to the current advice for people with earlier stage CKD who are in the ‘clinically vulnerable group’.
- People who cannot work from home can go out to work, provided that their workplace is COVID-safe.
- Children who are currently advised to shield can return to school if they are eligible. They should follow the hygiene rules and social distancing very carefully.
- You can go out to buy food, to places of worship and for exercising – while maintaining social distancing.
Employment for the shielding group in England from 1 August
The Government is asking employers to work with them to ease the transition back to a more normal way of life for their shielding employees. It is important that this group continues to take careful precautions beyond 1st August, 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’s Working safely during COVID-19 guidance 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. Statutory sick pay for people who are currently advised to shield will no longer be available after 1 August.
We will publish further information regarding safely returning to work as it becomes available. We recommend early discussions with your employer about returning to work. The majority of employers will want to support their employees and keep them safe. 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: on 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)
Support with shopping and medication for the shielding group in England from 1 August
The government foodboxes will stop from 1 August. Priority supermarket online delivery slots will still be available for people who are currently shielding. The NHS Volunteers service or local volunteer support will still be available and can be accessed online or via the telephone.
The Shielded Patient list will still 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 being shielding again.
Everyone in the shielding group in England, will have been written to with more information about this forthcoming change in guidance - the letter will look like this (PDF). Kidney Care UK will publish more information as it becomes available and will work with government to urge them to put the right support in place.
- Those who have been shielding at home are now able to leave home to spend time outdoors or meet outside with people from one other local household, while maintaining social distancing.
The original period during which shielding was advised in Wales came to an end on 15 June. The Welsh Government now recommend people continue to shield beyond this date. They will keep the advice under review and write to people with further advice by 16 August. They confirmed in a statement that, at the current time, they will not be implementing the same changes as in England. People who are shielding are advised they may like to join one other household, for form an extended household, from July 6th although it should be acknowledged that this may increase the risk of infection and it is particularly important to avoid anyone with COVID-19 symptoms.
The shielding guidance in Northern Ireland for people who are advised to shield came into effect 8 June:
- Those who have been shielding at home are now able to leave home to spend time outdoors with members of their own household, or, if they live along meet outside with one person from another household, while maintaining social distancing.
- The Government has extended the period during which they advise clinically extremely vulnerable people in Northern Ireland to shield to 31st July 2020.
- The current guidance for people in Northern Ireland who are advised to shield until 31st July is changing from 6th July. From 6th July:
- People who are shielding will be able to meet up to six people outside the home, as long as social distancing is strictly observed.
- In addition, people who are shielding and living alone will be able to form a support bubble from July 6 with one other household.
- The Executive announced that the advice to shield will be paused in Northern Ireland from 31st July. We will seek further information on this and update the guidance as soon as we can.
The shielding guidance in Scotland changed on 18 June:
- People are advised that they can spend time outdoors with members of their own household and one other household, in groups of up to 8 people
- It is advised that people can go outdoors for a walk, wheel, run or cycle, or a non-contact sport like golf.
- The Scottish Government are advising people to continue to shield until 31st July and will review this advice and write to people by that date, setting out next steps.
- In addition, they will provide tailored information to help individuals understand their own risk and how to reduce risk as soon as possible. Once the evidence supports broadening the advice beyond exercise, they will also encourage local authorities, retailers and other partners to consider how they can support this, for example by adapting opening times and processes to allow people who are shielding to safely access services. All food support services, such as food boxes and priority shopping slots, remain in place.
What should you do if you have someone else living with you?
Other members of your household do not need to shield themselves, but should stringently follow guidance on social distancing.
In addition, the whole household must be very careful to follow the measures set out in guidance, for example by cleaning any shared spaces in between use. Please read the full list of measures.
What support is available?
If you are in England please visit the government page for getting coronavirus support as an extremely vulnerable person or call 0800 028 8327, the Government's dedicated helpline to register for the support that you need. This includes help with food, shopping deliveries and additional care you might need. Try to have your NHS number with you when you register - it is at the top of NHS letters or prescriptions.
From 16 April an extra option has been added to the online registration page. You will be asked to confirm that you fall into one of the risk categories listed or you can now choose ‘My GP or clinician has advised me to shield’. Please tick the appropriate box. If you are on dialysis see the section on dialysis for how to self-register.
If you have not received a letter from the NHS then you may not be able to receive the support offered through this service. If you need urgent food or care, please contact your local council.
We are aware that some people who believe they have registered for support on the website have not received it. The Government service is working to resolve issues with the website and call centre. You are advised to re-register ensuring you have entered the correct NHS number on the website and your name and address as used in your NHS records.
You can also contact NHS Volunteers for help with shopping, getting medications, transport and, if you are feeling lonely, to have a telephone chat with a friendly person. The number for individuals to call to request help is 0808 196 3646
If you are in Scotland you should visit the Scottish government Covid-19 support page. Letters sent from NHS Scotland to extremely vulnerable people living in Scotland include instructions on how to register via text for support or you can access support by phoning your local authority’s shielding support line where you can arrange for food and medicine deliveries. There is also a telephone helpline particularly aimed at people without internet access or family support: 0800 111 4000 (9am – 5pm).
If you have been told by your GP that you’re in the shielding group, but you haven’t yet received a letter from the Chief Medical Officer, you may find there is a delay of several days before you are able to register for the text message service while your records are being updated. If you need help arranging groceries or other support while you are waiting to be able to register, you should contact your local authority.
People in Wales should visit the Welsh Government Covid-19 support page. If you need support you are advised to contact your local authority, using the details on the letter you receive advising you to shield or get help from your local volunteer centre on Third Sector Support Wales.
People in Northern Ireland should go to the Community NI website where they can input the help that they need and their 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 (firstname.lastname@example.org) and text message (text ACTION to 81025).
People in Northern Ireland who have been told by their GP that they are advised to shield themselves can register for support with securing an online shopping delivery from one of the large supermarkets. The Health and Social Care Board will be asked to verify that you are eligible to participate in the service (ie have been advised to shield).
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.
Support from supermarkets
The Governments of each UK nation have worked with supermarkets to arrange priority delivery. In England, the register of extremely vulnerable people is being shared with supermarkets. You must answer all the questions on the online support platform register and tick ‘no’ to the question ‘can you get essential supplies delivered. In Northern Ireland, you can register for support with getting an online shopping delivery from several large supermarkets. In Scotland this is arranged via the SMS text service or, if you do not use this service, you can arrange priority delivery on 0800 111 4000. In Wales, you do not need to register as supermarkets have been given the list of extremely vulnerable people and they will contact them and offer deliveries.
Some supermarkets have also begun to roll out support helplines, or use details recorded through loyalty schemes to contact the most vulnerable customers. We understand these helplines and indeed online deliveries have been extremely busy but supermarkets have by now increased capacity.
Alternatives to supermarkets
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 are launching delivery services for locals.
We heard from many people that they were having problems getting delivery slots despite being extremely vulnerable. This needs to change, so Kidney Care UK has joined with other charities and written to supermarkets asking them to sign up to a plan which will better support people who are shielding. We will keep you updated.
Food boxes are available, free of charge, for extremely vulnerable people who cannot otherwise get food via the support platforms for each country.
I haven’t received a letter about shielding
It may be that you received a letter from the chief medical officer, your GP or renal unit advising you to shield, or you may have been advised verbally by your doctor. However, we know that some people who should have been shielding may not have received clear information. If you are in one of the extremely vulnerable groups you should not wait for a letter to start shielding. If your employer asks for the letter, we recommend showing them the list of patients required to self-isolate.
If you are in the extremely vulnerable group but have not yet received a letter or your GP or hospital clinician has not advised you to self-isolate, you should make contact through the support platforms and helplines listed above for each country. Please see the section on dialysis for how to self-register if you are on dialysis in England. It may take time for any support offered through this service to arrive. Wherever possible you should continue to rely on friends, family and wider support to help you meet your needs. You may also be able to find help through local support groups, NHS Volunteers or your local authority.
You should also contact your GP or clinician to explain you haven’t received a letter
In England, people who are advised to shield are now being written to again with advice to continue shielding until 31st July - the letter will look like this (PDF). People in Wales, Scotland and Northern Ireland will also be written to again with further advice about shielding.
Chronic kidney disease (CKD)
I have CKD - am I at risk of severe illness from COVID-19?
Anyone who has CKD stage 3-5 has been defined at being at increased risk of severe illness from coronavirus and therefore should, take social distancing measures (or social isolation/shielding if advised to do so). Another way to look at this is that if you need a flu jab you should consider yourself in one of the at risk groups. The later your stage of CKD, the greater your risk and the more stringent you need to be about avoiding interaction with others.
I am on dialysis - am I at risk?
It is thought that if you are at increased risk of severe illness you are advised to follow the shielding advice. 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.
Some people may be asked to do two sessions a week rather than three, provided it is considered safe for you do so. If the gaps between sessions are longer, it is extra important to watch your fluid and diet, avoiding high potassium food. If you’re looking for some kidney friendly recipes then we have some on the Kidney Kitchen website and hope to be adding more recipes to the site soon. There are some that are particularly suited to batch cooking and freezing such as shepherd’s pie and the one pot casserole.
The Renal Nutrition group have written some guidance for patients on haemodialysis on the importance of managing your fluid and potassium restrictions
I am on dialysis - do the new guidelines regarding self-isolation/shielding affect me?
You are at increased risk from COVID-19 and are advised to shield yourself, apart from the requirement to continue to go to your dialysis sessions. The Chief Medical Officer for England confirmed that dialysis patients should be included in the shielding group and GPs have been advised accordingly. This applies in all four UK countries.
The means of identifying and contact people on dialysis who are advised to shield themselves differs slightly between countries. In the main, people will be identified by their hospital consultant.
In England, people on dialysis can register online for assistance through the Government’s support platform. Dialysis patients are not listed separately on the register of those ‘extremely vulnerable to coronavirus’ but you should tick the box which says, "Yes, I have one of the medical conditions on the list” because you will come under one of the categories highlighted here with an asterix* depending on your health condition and treatment to date:-
"Do you have a medical condition that makes you extremely vulnerable to coronavirus?
You’re extremely vulnerable if you:
- *have had a solid organ transplant - People with kidney (or other) transplants
- have any cancer and are getting chemotherapy
- have lung cancer and are getting radical radiotherapy
- have cancer of the blood or bone marrow, at any stage of treatment - for example, leukaemia, lymphoma or myeloma
- have any cancer for which you’re getting immunotherapy or other continuing antibody treatments
- have any cancer for which you’re getting a targeted treatment which can affect the immune system - for example, protein kinase inhibitors or PARP inhibitors
- have had bone marrow or stem cell transplants in the last 6 months, or are still taking immunosuppression drugs
- have a severe respiratory condition - including cystic fibrosis, severe asthma or severe COPD (Chronic Obstructive Pulmonary Disease)
- *have a rare disease or inborn error of metabolism that significantly increases your risk of infection - for example SCID or homozygous sickle cell - People on dialysis. Dialysis is a rare condition affecting less than 1 in 2000 people and increases your risk from infection
- *are getting an immunosuppression therapy that’s sufficient to significantly increase your risk of infection - People with kidney diseases requiring immunosuppression
- are pregnant, and have a significant congenital or acquired heart disease"
You now have a choices of 3 boxes to tick –Yes, I have one of these conditions, Yes, I have been advised by my GP or clinician to shield or No, I don’t have one of these conditions.
We encourage you to sign up now even if you have not done so previously, or call the helpline on 0800 028 8327. You can continue to do this until 17 July.
There has been confusion about whether dialysis patients are advised to be shielding/self-isolating or not and whether they can self-register on the Government’s support platform. This is a new and changing situation, with decisions being made according to the current understanding of this disease and the Department of Health and Social Care has explained that groups of patients are added if the data shows that they are at most high risk. However, we understand that this uncertainly may have caused some anxiety and we have also found it frustrating. We welcomed the Chief Medical Officer’s confirmation that, in all four countries, people on dialysis should be included. This provides certainty and we hope that this makes it easier for people to get the support they need.
The Department for Health and Social Care have said that dialysis is not going to be added as a specific condition/treatment to the list of very vulnerable groups on the Government website because the conditions on that list (known as Group 1 conditions) are those that can be identified through national databases. There is no national database that allows identification of people on dialysis. Instead, people on dialysis are identified by the hospital that treats them. Patients who have to be identified by their hospital are known as Group 2 conditions. This does not mean they are at a lower risk from COVID-19 or shielding is less important, just that there is a different way of identification and contact.
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, patients 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 affirms that is should be a patient 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 2 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. It is quite possible that some of the patient transport services will be disrupted as pressure on transport services increases. 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 some of this pressure. Units will of course continue to provide transport where essential. But if even a small proportion of people who usually travel with hospital transport can find alternative transport that will make a huge difference.
On 30 March NHS England issued new guidance on transport stating that people going to dialysis must be treated as a priority group. The guidance also covers transport for people with transplants and others in the extremely vulnerable group. If friends or family cannot drive you, transport must be provided by current transport services or volunteers, including local voluntary groups and the NHS Volunteer Responders. Current patient transport eligibility criteria will be suspended with immediate effect. Drivers should also be wearing PPE; we are hearing that this is not happening everywhere. If this is the case please let us know directly or through your local advocacy officer.
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. And drivers will be trained in how to clean vehicles thoroughly in between journeys and carry out a deep clean at the end of the day.
In Wales, Non-Emergency Patient Transport Service (NEPTS) will continue. 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) from 15th March 2020. 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?
If you are on home dialysis, haemo or PD, you are advised to shield yourself and register for support through each country’s website or helpline. 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. As above, if there are delays in getting help through the Government support platform we recommend you seek support from local voluntary groups such as Covid Mutual Aid UK or NHS Volunteers.
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 2 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.
Acute Kidney Injury (AKI)
Kidney Care UK was very concerned at reports of a critical shortage of supplies for the provision of dialysis treatment in Intensive Care Units for patients with acute kidney injury (AKI) caused by COVID-19. For those patients who are on ventilators, over 28% will develop severe AKI and require dialysis treatment. A huge amount of work is going on amongst kidney doctors and critical care specialists to address this shortage by sharing resources effectively and using alternatives to usual treatments.
It is important to say we have been reassured by medical colleagues that that this urgent situation affects ICUs and patients with acute kidney injury, and they do not anticipate any issues with supplies of the material needed for long-term haemodialysis or peritoneal dialysis. The National Institute for Health and Social Care has issued guidance on caring for people with Acute Kidney Injury.
Leaving the house
Should I wear a face mask?
If you are not required to self-isolate and are therefore leaving the house for exercise, essential shopping or work, you may be considering wearing a face mask or face covering. 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 also offer some protection.
Face coverings are mandatory in England and Scotland on public transport. This is because public transport is expected to get busier as businesses and retail begin to re-open. In addition, all NHS staff in England have to wear surgical masks at all times, in all areas. Face masks will also be mandatory in shops in Scotland from 10 July.
Dialysis patients should wear face masks during transport to and from dialysis, waiting and treatment and in most cases should be given these masks by their unit. For others, the World Health Organisation (WHO) recommend wearing a face mask only if you are caring for someone with COVID-19. If you do decide to wear a face mask it is really important to use it properly and dispose of it properly, otherwise it can do more harm than good. A WHO video shows how to use a mask.
Birmingham University have also produced an infographic on how to wear a face mask or face covering.
The UK Government and Scottish Government conclude that while the evidence on the use of face coverings is limited, there may be some benefit in wearing a facial covering in certain circumstances where physical distancing is difficult (eg public transport). However, physical distancing, hand washing and respiratory hygiene are the most important and effective measures to prevent the spread of coronavirus. This guidance is therefore a recommendation rather than a mandatory requirement for the public (apart from on public transport in England and Scotland). The Scottish Government has published guidance about face coverings and the UK Government have produced guidance about how to wear and make a cloth face covering. Clothes should also be washed regularly, as there is some evidence that the virus can stay on fabrics.
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.
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.
What about going to work?
The government now stipulate that you must only leave the house to travel to work if it is impossible for you to work from home - there is guidance for employees on the government website. The guidance issued on 11 May said that all workers who cannot work from home should travel to work if their workplace is open. As soon as practicable, workplaces should follow the new “COVID-19 Secure” guidelines.
It is still important that you should not go to work if you have been told to self-isolate or advised to shield. This is changing in England from 1st August.
If you or a member of your household does have to go to work you must follow social distancing rules stringently and, if necessary, we recommend asking your employer if it is possible to change the work you do so to reduce your risk. For example, reducing face to face contact with colleagues and customers/clients. You could perhaps show them this guidance to explain why it is necessary.
Following concern that employees were not able to follow social distancing guidelines, the Welsh Government have introduced new regulations which mean employers in Wales will be breaking the law from next week if they do not make sure that staff are able to maintain the 2-metre physical distancing rule.
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 essential shopping items. You should also register as a vulnerable person to receive support with shopping although this may take time to organise. While you are waiting, please 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 NHS Volunteers.
What about school?
As part of the plan to ease lockdown measures announced on 11 May, schools in England are beginning to reopen and still remain open for children of key workers. Both primary and secondary schools will be reopening in England from September.
- More guidance is available on schools reopening.
- Children who are in the extremely vulnerable group are not required to attend and are advised to continue to shield themselves. Please note the updated guidance from the British Association for Paediatric Nephrology and discuss any questions with your hospital team.
- The advice is changing in England from 1st August and children who in the clinically extremely vulnerable group may go to school if they are eligible, while practising frequent hand washing and social distancing.
- Children and young people who live in a household with someone who is extremely clinically vulnerable and shielding should only attend if stringent social distancing can be adhered to and the child or young person is able to understand and follow those instructions.
- In Wales, school will begin to reopen from 29 June
- In Scotland, schools will start to open for the new term on 11 August, although it will not be full time straight away.
- In Northern Ireland, schools are closed until further notice, although it is hoped that schools can start to reopen from September.
Can I go outside at all?
Unless you or a member of your household has symptoms of COVID-19 and you have to self-isolate, you can go out to exercise, keeping 2 metres apart from others. However, you should avoid busy, crowded places. It is important for your physical and mental health to keep active during these difficult times. The rules regarding leaving your house to exercise vary slightly between the UK nations See individual guidance for each country. If you have been advised to shield, advice regarding leaving your house says you may consider spending time outside your house. You should maintain strict social distancing and follow sensible precautions if you do choose to leave your house. Rules are changing again in England and Northern Ireland from 6 July.
Can I meet up with other people from outside my house?
Rules have eased meaning it is possible to meet up with a limited number of people from outside your own household, whilst maintaining social distancing. Rules vary slightly between each country in the UK. See individual guidance for each country. Rules are changing again in England and Northern Ireland from July 6th.
In England, Scotland and Northern Ireland, it is now possible for people living alone (or single parents living with children) to form ‘support bubbles’ with another household. From 6th July people who are shielding in England and Northern Ireland may form a support bubble with another household.
People in the shielding group in England and Northern Ireland are advised they may consider going outside only with people from their own household, or if they live alone they may meet with one person from another household. The guidance is changing in England and Northern Ireland from 6th July, so that people are advised they may meet up out of doors with up to 5 people from other households. Everyone in the shielding group is advised to stay 2 metres apart from other people.
In Wales, people who are shielding are advised they can consider meeting up with people from one other household who live locally. In Wales, from 6th July, people who are shielding are advised they (in line with the rest of the population) may consider whether their household could join up with one other household, to form an exclusive, extended household. These two households could meet up indoors and stay overnight. However, the government advise that this may increase risk of infection with COVID-19, so urge caution.
In Scotland people who are shielding can meet outside with one other household in a group of up to eight people
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.
I am looking after my relative/I am a carer - what should I do?
The government website has guidance on social distancing for everyone in the UK and protecting older people and vulnerable adults
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.
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. Many children have contracted the virus and been completely asymptomatic (no symptoms at all). Like other similar winter viruses there have been cases of children requiring higher levels of care with COVID-19.
The British Association for Paediatric Nephrology have produced new guidance 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 low. Those who are considered extremely vulnerable and advised to shield are immediately post-transplant, those on certain doses of immunosuppressants, or as advised by your kidney doctor.
If you live with a child who is clinically extremely vulnerable you should try to follow the advice on living with other people, although you should continue to have physical contact to provide essential care. The Royal College for Paediatric and Child Health has produced this advice for families during the pandemic (PDF)
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.
Specialist children’s kidney doctors have 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.
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 shielding measures to keep yourself safe, irrespective of pregnancy.
“Extremely vulnerable” patients are advised to remain in physical isolation for 12 weeks at present so these women should give particular consideration to postponing planned pregnancies and using robust contraception in the current pandemic.
Women who are currently pregnant
Pregnancy has not been associated with more severe COVID-19 disease in women, nor have 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 health 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.
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.
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 can take place in independent hospitals which have not seen any COVID-19 cases. The NHSBT update of 26th June reported that the Royal Free had performed 5 living donor transplants and other London transplant centres had more booked for the forthcoming weeks.
There is a reasonable possibility that the Living Kidney Sharing Scheme will run in October.
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, the NHS are now encouraging transplant centres to restart the kidney transplant service. This is happening slowly at first and only where it is safe to do so. This includes living donation. You can see which centres are open, and your unit should let you know about the plan for you. The NHSBT update of 26th June reported that 16 out of 23 adult renal transplant centres were open, although most for deceased donor transplants only.
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 advised to shield.
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.
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, 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 have an effect the risk of getting infections or the severity of infections, including angiotensin converting enzyme inhibitors or angiotensin receptor blockers. 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.
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 advise by our medical colleagues. You should continue to take your medication as you are. 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.
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
Interactions with transplant immunosuppression medicines such as tacrolimus, ciclosporin or sirolimus can interact with other medicines. It is important that when any new medication is started you tell the prescriber that you are taking one of these immunosuppressants.
Other medicines which can cause problems with tacrolimus, ciclosporin or sirolimus include:-
- Some antifungal and antibiotic medications - for example fluconazole and clarithromycin.
During the period of COVID-19 you may have a chest infection where antibiotics are required. If clarithromycin is used you may need a dose reduction in tacrolimus (or ciclosporin or sirolimus) but do not change anything unless asked to by your renal team.
If you are self-isolating, 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
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.
Employment and benefits
The Department of Work and Pensions (DWP) have made some changes to the way that the benefits system will operate. More information can be found on the Government website page for Coronavirus support for employees, benefit claimants and businesses
Employers have been urged by Government to take socially responsible decisions and listen to the concerns of their workforce. If you need guidance about any in-work disputes during the COVID-19 outbreak they should approach ACAS where they can get impartial advice.
PIP and ESA reviews
Following the initial three month suspension, the DWP announced that 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.
Universal Credit and Employment and Support Allowance (ESA)
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
As part of the budget announced on 11 March, the chancellor announced that Statutory Sick Pay (SSP) will be 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 are also currently eligible for SSP, but this will come to an end on 31st July in England, when people are advised they may return to work if their workplace is COVID-secure.
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 2 weeks per employee
Furloughed worker scheme
The Government have announced it will pay 80% of employees’ wages (up to £2,500) 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. 10 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.
The Government has also said it will explore ways through which furloughed workers who wish to do additional training or learn new skills are supported during this period. We will update you on this as soon as information is available.
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 are available to self employed people and Universal Credit will also be 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.
As the rules regarding travel around the UK and advice to people shielding is due to change over the coming months, Kidney Care UK are in discussions with kidney specialists with regard to when dialysis away from base may restart. We will update this guidance with more information as soon as we have it.
Travel for people on dialysis – dialysis away from your own unit
There is no travel to another unit to receive dialysis (unless specifically told to do so by your renal team) but stay at your own unit. This means no dialysis away from base until further notice, whether in the UK or abroad. This is because staff at other units may be stretched by staff illness and by the need to support their patients. Also, depending on where you were planning to travel to, there may be risks of additional infection if the country has a less developed health system than the NHS. The Renal Association is working with Kidney Care UK and others to provide new guidance for kidney units on travel in the future.
If you have already booked and are due to travel in the near future, please check with both your own renal unit and the dialysis provider where you are due to travel to. They will be able to advise you.
Travel and holiday information
If you have to cancel travel plans, which were covered by insurance, because it is no longer advisable for you to travel, please contact your insurer.
The Foreign and Commonwealth Office (FCO) has advised against all but essential international travel. This decision will therefore allow policyholders with cancellation or travel disruption cover in place to claim for cancelled trips that were already booked and cannot now go ahead. You will not need a letter from your doctor.
More information 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.
- We have a page with some tips on managing your anxiety
- 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 subscription to people who are unemployed.
- NHS Grampian have produced Tips on how to cope if you are worried about Coronavirus and in isolation
- 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.
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