Updated 3pm 6 April
Government guidance may change in the coming weeks and we will update this advice page to correspond with any changes. 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 in response to developments, 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.
If you need to speak to your local kidney unit please be patient as they are likely to receive a high number of calls about this over the next few days – please do keep looking at this website daily as it will have regular updates and your question may be answered without needing to speak to your kidney specialist.
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Contents of this page:-
- What should I do if I have symptoms of COVID-19?
- Groups who should self-isolate
- What is self-isolation, also referred to as shielding?
- Chronic kidney disease (CKD)
- Leaving the house
- Children with kidney disease
- Other conditions
- Employment and benefits
- Managing anxiety and fear
- Health professionals
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
Then you should self-isolate and stay at home for seven days if you live alone and you 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 and the dialysis unit can then ensure that kidney care continues to be provided. 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. Please don't go directly into your unit until you know what arrangements are being made for you.
If you have had a transplant and believe you have COVID-19 you should let your transplant unit know. You are now being advised to self-isolate for 12 weeks regardless of having symptoms. You should also seek clinical advice using the NHS 111 online coronavirus service or call NHS111 if you don’t have internet access, telling the call handler about your kidney condition. In an emergency, call 999 if you are seriously ill. Do not visit the GP, pharmacy, urgent care centre or a hospital. Do this as soon as you get symptoms. Do not change your medications unless advised to do so by your renal unit.
For more information and support for people who are required to self-isolate because they have COVID-19, please see the government guidance for people with confirmed or possible coronavirus (COVID-19) infection
If someone else in the household develops symptoms of COVID-19 you should 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.
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:
On 23 March 2020, the Government announced new measures to be followed by the whole population to minimise contact between people by restricting the number of times people leave their homes and preventing gatherings. People will be allowed to leave their home only for essential shopping, to exercise once a day, and for medical reasons. More information is available on the government website - full guidance on staying at home and away from others.
It is vital that people with moderate to advanced chronic kidney disease follow these rules. In addition, if you or your family members do not have symptoms of COVID-19 the current advice is that anyone with moderate to advanced chronic kidney disease (CKD) 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. Read the full advice on social distancing on the government website
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 and are now advised to start strict self-isolation (also known as shielding). This include people who have had a transplant or take a certain level of immunosuppressive medicines or who are on dialysis.
The NHS is writing to all individuals who must follow this guidance. However, you do not need to wait for a letter. If you think you are in one of the very high-risk groups then you should start shielding yourself from face-to-face contact. Read the full advice on shielding.
This extremely vulnerable group also includes people with certain other serious medical conditions, 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 you can check the government guidance on shielding and protecting people defined on medical grounds as extremely vulnerable from COVID-19
Groups who should self-isolate
You are at very high risk and will need to self-isolate 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.
What is self-isolation, also referred to as shielding?
Shielding is a measure to protect people who have certain medical conditions which make them extremely vulnerable by minimising all interaction with other people
If you have received a letter from the NHS telling you to self-isolate or believe you are in this extremely vulnerable group you are strongly advised to shield yourself, to reduce the chance of getting coronavirus (COVID-19) and follow the face-to-face distancing measures below.
The measures are:
- Strictly avoid contact with someone who is displaying symptoms of coronavirus (COVID-19). These symptoms include high temperature and/or new and continuous cough.
- Do not leave your house.
- 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, leisure or travel and, when arranging food or medication deliveries, these should be left at the door to minimise contact.*
- Keep in touch using remote technology such as phone, internet, and social media
*Please note as of 23 March 2020, social gatherings and leaving the house other than for essential shopping or medical reasons is not allowed for anyone.
How do these measures differ from the social distancing guidance for vulnerable people issued?
You are strongly advised to stay at home at all times and avoid any face-to-face contact for a period of at least 12 weeks, including with members of your own household where possible.
What should you do if you have someone else living with you?
Whilst the rest of your household are not required to adopt these protective shielding measures for themselves, we would expect them to do what they can to support you in shielding and to stringently follow guidance on social distancing as well as the new restrictions on leaving the house announced 23 March 2020.
People who share a home with someone in a high risk group do not have to adopt shielding measures, as long as they are following the social distancing guidance stringently. 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 for people who must self-isolate?
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. Please see the section on dialysis for how to self-register if you are on dialysis.
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.
Go to the Welsh Government website for information for people living in 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).
You may also be able to find help through local support groups or your local authority.
I haven’t received a letter about shielding
The NHS is working hard to send letters or texts to all who should be self-isolating. However, because it is such a huge task there may be some people who have not yet received a letter despite being in one of the patient groups listed as ‘extremely vulnerable to coronavirus’ (see above).
If you are in one of the extremely vulnerable groups you should not wait for a letter to start self-isolation. If your employer asks for the letter, we recommend showing them the list of patients required to self-isolate.
People who should self-isolate are being identified in a number of ways, which means you may receive your letter from your GP, hospital team or national NHS. This includes from national databases and from records kept by hospital teams. Hospital specialists and GPs are also being asked to check their patient lists for patients who should self-isolate and will not have been picked up through databases.
If you, or someone you care for, are included in the list of extremely vulnerable people and have not received a letter or text yet, 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. You should then contact your GP or clinician to explain you haven’t received a letter. 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.
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 you are at increased risk of severe illness and it is very important that you follow the shielding advice. Your renal unit will work with you to ensure you get your treatment. You will still get your dialysis; you may be asked to come in at a different time and some people may be asked to do two sessions a week rather than three, provided it is considered to be 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?
Yes they do. If you are on dialysis you are at a high risk of having serious illness from COVID-19 and you should follow all the shielding advice, apart from the requirement to continue to go to your dialysis sessions. You can also register for assistance through the Government’s support platform. Dialysis patients are not listed separately on the register of those ‘extremely vulnerable to coronavirus’ but 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"
Tick the box which says, "Yes, I have one of the medical conditions on the list."
Clinical directors of renal units will be writing to everyone on dialysis to advise them to self-isolate. Please do not wait for your letter to being to self-isolate or register for support. You may well have already received a text from the NHS to advise you to self-isolate because you have other serious conditions, or your care team believe your overall health puts you at very high risk.
Dialysis patients in England who have not yet received a letter or text from the NHS should self-register for support on the Government’s support platform or call 0800 028 8327, the Government's dedicated helpline. As mentioned, dialysis patients are not listed separately on the register of those ‘extremely vulnerable to coronavirus’ but should register using one of the three choices highlighted in the list above. If there are any delays to receiving the support you need we encourage patients to seek help from friends, family or Covid Mutual Aid groups offering to collect shopping, medicines and other essential supplies.
Information about how patients in Wales, Scotland and Northern Ireland should register for support is here.
There has been confusion about whether dialysis patients should be shielding/self-isolating or not and whether they can self-register on the Government’s support platform. We understand that this uncertainly may have caused some anxiety. This is a new and changing situation, with decisions being made according to the current understanding of this disease. We too have found it frustrating, however, we are pleased now to have some certainty and reassurance that people who need to self-isolate to stay safe will find it easier to get the support they need to do so.
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.
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.
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 and we will continue to call for the UK government to make sure the right equipment available.
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.
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 should self isolate for a period of 12 weeks 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
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.
Leaving the house
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.
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. You should not go to work if you have been told to self-isolate.
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 are introducing new regulations on Tuesday 7 April 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 you will need to ask a friend, family or neighbour to get your essential shopping items. If this is not possible, then the public sector, business, charities, and the general public are gearing up to help those advised to stay at home. Please discuss your daily needs during this period of staying at home with carers, family, friends, neighbours or COVID-19 Mutual Aid group local community groups, or Community NI in Northern Ireland, to see how they can support you.
You should also register as a vulnerable person to receive support with shopping. If you have not been advised to self-isolate the social distancing guidance applies as well as the Government’s rules on only visiting the shops for essential items, minimising visits to the shops and arranging home delivery if possible. 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
What about school?
Schools are now closed to many children unless they are children of key workers. If you are a key worker with school facilities available and are in an at risk group, speak to your kidney doctor or GP as it is likely that you will be advised to keep your children at home if you can to protect you.
Can I go outside at all?
Unless you are in a very high risk group (including those with a transplant or taking immunosuppressants) and have been written to with advice about self-isolation, you can go out for a walk once a day, 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.
Please note that as of 23 March 2020 individuals are now only allowed to leave the home once a day for exercise, either alone or with members of their household. This guidance will remain in place for at least three weeks.
If you have been told to self-isolate, you can still go outside in a private outdoors space. You must keep at least 2 metres away from neighbours and members of your household.
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?
The general advice on prevention of transmission, hygiene and social-distancing measures are completely the same between adults and children.
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.
Children identified at higher risk include:
- All children on dialysis
- Children with CKD stage 5, awaiting dialysis or awaiting a transplant
- Children with CKD stage 4, especially those children who have other co-morbidities (other health problems in other organs, such as heart, lungs, liver, and neurology)
- Children with CKD stage 3, if they have other co morbidities (other health problems in other organs, such as heart, lungs, liver, and neurology)
All of these groups should practice strict social distancing. Like adults, if a child is unwell or has a fever this should be discussed with their treating kidney team since self-isolation without notifying your team can present additional risks. These risks include invasive bacterial infections, bacterial peritonitis and haemodialysis line infections that often present with fever alone. Any report of fever should be discussed with your renal team.
As of 22 March 2020 additional new guidance has been produced covering:
- Children with a kidney or other organ transplant
- Children taking immunosuppression for other auto-immune or inflammatory kidney conditions
This group of patients have been issued with new guidelines recommending strict self-isolation for a period of 12 weeks throughout the height of the pandemic. Specific instructions have been developed covering immunosuppression type, strength, frequency and length of treatment as well as the severity of the underlying disorder.
The British Association for Paediatric Nephrology (BAPN) has joined forces with the Renal Association to produce patient advice and information covering all children in these high-risk groups. This can be found on the Renal Association's useful information & resources page
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.
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. You may have subsequently developed other health reasons which make you high risk and if that is the case it is important to take the advice of the government to socially distance
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.
I have a living donation planned – what will happen?
The April matching run of the Living Kidney Sharing Scheme will not go ahead.
Living donation in general
At present, centres are reacting to their own local resource issues and the wishes of donors and recipients. Some centres have closed their living donor programmes due to concerns about the risk of COVID-19 in both donors and recipients. Other centres are reviewing the pairings that are scheduled for the next weeks and performing a risk analysis on a case-by-case basis.
Potential living donors will be assessed in line with NHS Blood and Transplant policy to evaluate their risk of having COVID-19. For deceased donation, all organ donors will be assessed in line with advice from NHSBT.
People on the transplant waiting list
People who are due to have a transplant need to be aware that things are changing. Public health measures and availability of critical care beds will pose restrictions on the NHS' ability to undertake organ transplants. The decision to undertake transplantation will need to be made on a case-by-case basis where the risk of infection at a time of peak immunosuppression must be balanced against the risk of organ failure or treatment of organ failure. In the event of more widespread infection or reduced availability of resources for the care of recipients and/or living donors, a temporary suspension of acute transplant activities may be necessary. At the moment there is no national restriction to transplant activity and each patient/transplant will be considered on a case-by-case basis. Some kidney transplant centres have already taken 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.
Up-to-date information about the transplant programme in Scotland (which is still continuing) can be found at Organ Donation Scotland.
Organ Donation opt-out plans
The Scottish Government announced last year that the Human Tissue (Authorisation)(Scotland)Act 2019 which would 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, it is possible that the health reasons leading to the kidney removal will put your risk into the high risk group and if that is the case it is important to take the advice of the government to socially distance.
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. 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. It is particularly important that you avoid this at the moment as the World Health Organisation recommends that ibuprofen should not be used in people with COVID-19.
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.
Supplies of Adoport® (Tacrolimus)
Please be reassured that current Adoport® stocks within the UK are sufficient to meet normal demand.
However, over the past 2 weeks an unprecedented demand for Adoport® has been seen, and if this continues to increase, supply may be affected. In order to maintain a regular supply chain and ensure sufficient medication for all, we are asking patients to help us by observing the following:
- Order medication in your usual way and in usual quantities
- Do not order extra supplies of Adoport® to create a ‘stockpile’
- Do not put extra pressure on NHS services by requesting unnecessary supplies
Both prescribers and patients have a responsibility to ensure there is enough medication for all who need it during this pandemic – providing the above steps are taken an adequate supply chain will be maintained.
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.
How data on kidney patients is being used to support their care
Renal units are already using 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 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.
If you have questions about how the UKRR are using information on patients please contact them directly via the UK Renal Registry website
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
The DWP announced that PIP and ESA reviews and reassessments are suspended for three months. 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 (eg 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.
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.
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 they have lost their job because their business was forced to close temporarily because of COVID-19. This is to enable employers to retain employees during this outbreak. Currently, people who are not working because they are following Government guidance to stay at home are eligible for Statutory Sick Pay rather than this scheme (some employers have more generous contractual sick pay schemes, so do check).
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.
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.
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. Most countries are now closing their borders to international travel, as you will have seen.
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 travel for 30 days from 17 March 2020. 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
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 also have a page on mindfulness colouring
You may also wish to look at the Every Mind Matters website
NHS Grampian have produced Tips on how to cope if you are worried about Coronavirus and in isolation
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.
The Scottish Government is pointing people towards volunteering opportunities such as the Red Cross community reserves, there is not currently a scheme specific to the Scottish NHS.
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