Summary of the discussion
The Covid-19 outbreak has challenged us all in many ways and Dr Sivaprakasam said how struck he has been at the resilience of kidney patients and their families, as well as the many NHS staff he has worked alongside. Because Covid is a new disease, there was a very steep learning curve in terms of how to respond and how the virus affected different people. We are all continuing to learn and adapt, in order to provide the best care to everyone.
It is important to note the distinction between, firstly, the risk of catching Covid and, secondly, the risk of getting very ill after developing Covid. Data has shown that people with kidney transplants are at no greater risk of catching Covid than others and actually relatively few people from this group have caught Covid because they have been shielding. Moving forward, the things people can do to reduce their risk of catching the virus are generally the same as for the whole population – reducing the number of people you meet up with, being really careful to keep 2m from people outside of your household/bubble and following very careful hygiene measures. It is important to follow the most up to date government advice.
People with a kidney transplant are at high risk of becoming very ill if they contract Covid-19, but there are a good numbers of cases of people contracting Covid and recovering well. People’s level of individual risk will vary and it is best to speak to your kidney doctor to understand your own risk. There is a range of factors which increase risk but having one or two of those risks does not mean you will definitely be at high risk overall. It is important to note that although being from a Black and Minority Ethnic community is a risk factor, individuals from these community who are otherwise lower risk (e.g. from a younger age group, no other illnesses) may not be high risk overall.
People with a recent transplant (within 3 months) are at highest risk of poor outcomes from Covid, because they are on a higher level of immunosuppression drugs. Therefore, it is important that this group continues to shield themselves as much as possible.
When it comes to decisions about going back to work or sending children back to school, its best to speak to your care team about your level of risk and then to the school or employer about what they can do to reduce risk. If you can work from home, it may be best for you to do this. Your employer must do a careful risk assessment before you return, so you can understand what actions they are taking. All the same safety guidance applies at school or work, which means you should keep 2m from others, and you and others around you should follow careful hygiene measures. Your doctor can write a letter for you to give to your employer about your risk level and what safety measures they should adopt.
Transplant units have been working hard to keep patients safe during the Covid-19 outbreak. The transplant programme nearly came to a halt during Covid-19, as doctors did not know whether it was safe, but has mainly now reopened. If a transplant operation may be more complex for you, or you would need a high level of immunosuppressants it may be that this is not the right time for you to be active again on the transplant list. You should speak to your team about this if you have any concerns.
Once a vaccine is developed, then patients with a kidney transplant will be a priority group to receive it. However, transplant patients were not involved in the clinical trials testing the vaccine, so they will need to be carefully monitored after taking the vaccine to check their response to it.
What risk does Covid pose to people with kidney transplants?
If you have kidney disease you are at higher risk of becoming more ill if you contract Covid-19 and this is particularly true if you have had a kidney transplant. People who have had a recent transplant (within 3 months) are at particularly high risk from Covid, because they are on a higher level of immunosuppressant drugs. Also, people who are experiencing a rejection may be at risk because they are taking a higher level of immunosuppressants.
It is important to note that because many people with kidney disease and transplants have been shielding there have been relatively few cases of Covid amongst this group. The limited amount of data available show people with transplants are at high risk of becoming very ill with Covid. However, it is important to note that this is based on a small number of people who were very ill and were admitted to hospital very early on in the outbreak. It may not be representative of the whole population of people with kidney transplants who contracted Covid – some of whom may have had milder symptoms and were not admitted to hospital. Also, since the early stage of the outbreak we have learnt a lot about how best to treat people with Covid. So, while it is true that people with kidney transplants are at higher risk of becoming very ill with Covid and need to continue to be extremely careful, we are continuing to learn about the virus, how to reduce risk and how to effectively treat people.
Because Covid poses a particular risk to people with kidney transplants, it is important to keep a careful eye on your health and contact your care team if you feel unwell. This will allow any infections to be picked up early and treated promptly. This is also true for other people in your household.
How does age and other individual characteristics affect my risk?
There is a range of factors associated with better outcomes from Covid-19. This information and infographics illustrate this. Age is a very important factor, with younger age groups being at lower risk than older groups. Evidence gathered shows children with transplants and other long term conditions are not at high risk from Covid and many have been removed from the list of clinically extremely vulnerable groups (although individuals may receive specific advice from their clinician).
Other factors increasing risk include being of the male sex, being from the BAME population (particularly Afro-Caribbean and Asian groups), diabetes, obesity, and an underlying health condition like kidney disease. But having one or two of those risks does not mean you will definitely be at high risk overall. For example, if you are a younger male from an Afro-Carribbean background, you may be at lower risk than an older male from a white background. It is best to discuss your individual risk with your own physician.
What can we do to keep safe in the community?
Key things that kidney patients and their families should do are the same as for the general population, so for example keeping at least 2m from other people, frequent hand washing, using a lanyard or badge to encourage others to keep their distance from you. You should try to avoid being face to face with too many people from outside your own household or support bubble.
You should carefully follow the latest Government advice about how to reduce risk. Rules vary between UK countries and areas where there are local lockdowns. The Kidney Care UK online advice has links to the most recent advice.
What are transplant units doing to keep patients safe?
Units have put lots of safety measures in place and staff are working hard to keep patients and themselves safe. The renal community has come together to develop national recommendations to provide expert guidance for local units. We are still learning and getting better all the time. The bottom line is that no one wants you to be unsafe if you come into hospital.
If you are contacted with an offer of transplant, your transplant team will carefully explain all of the safety measures that are in place to reduce your risk from Covid. The measures include using separate, safe entrances to the hospital, staying in Covid free areas, and being rapidly tested for covid. The transplant will not go ahead if you have Covid and there are no transplants from donors with Covid. There will be a restricted number of people looking after you, pre and post-transplant. You will have a personalised plan for follow up which minimise the number of times you will have to go to the main hospital.
Planned procedures enable even more careful planning so the risk is lower. Dr Sivaprakasam has found that his recent transplant patients have felt very reassured, although one downside is that patients cannot have visitors.
Is it safe to have a transplant now or could it be safer to stay on dialysis?
Dr Suckling explained that initially most transplants were halted as clinicians did not know how risky it would be during the Covid-19 outbreak. However, most units are now re-opening. You should discuss with your care team about whether it is appropriate for you to be reactivated on the transplant list and whether it would be safe for you to receive a donor organ. If you are likely to need lots of immunosuppression or are likely to have a more complex operation it may still be too risky for you to have a transplant. But if you do not have these additional concerns it is likely to be safer for you to receive a transplant than stay on dialysis, if an organ became available. It is important to have a thorough discussion with your unit so you understand what is best for you.
If you have the option of a living donation, this is likely to be a good option and better than remaining on dialysis.
The level of Covid-19 infection of people on home dialysis has been significantly less than people receiving in unit dialysis because they are not spending time in the unit. You may like to consider this when making a decision about reactivation on the transplant list and dialysis treatment choices.
What is the impact now on the transplant programme and will units be closed down again?
Although the deceased organ donation recovered quickly, people in different areas of the country may have felt they were waiting longer than others because there are many different factors at play in different areas, for example infection rates and how the layout of the hospital building enables social distancing. If there have to be future closures in particular areas, it might be worth thinking about whether you would be willing to travel to a different area and discussing this with your team.
It is difficult to fully understand the impact on waiting lists, because of how individual characteristics are affecting re-activation on the list.
Unfortunately, living donation has taken longer to recover but everyone is working really hard to get back to normal. The Kidney Sharing October Matching Run is all set to go ahead.
Lisa Burnapp said that we are doing everything we can to avoid future closures and there will be no central instruction for all units to close.
Procedures involving organs received from overseas donors are much more complex and less likely to go ahead currently.
Should I shield if I am on the transplant waiting list?
Although it might be impossible to completely shield yourself, we recommend that you are as careful as possible. Other people who you live with you should also be cautious and stringently follow the latest Government advice.
Should I be shielding before a live donation?
All units will have a policy for people who have a planned living donation, which they will share with their patients about before the transplant. You and your donor should shield as much as possible for two weeks before the procedure. You will also need to shield for 3 months afterwards, but your donor will not have to.
If you are involved in a match which involves other recipient pairs, then you both need to be really careful as the whole chain could go down if anyone contracts Covid.
Is it safe for children of kidney patients to go back to school?
There is no clear-cut answer to this, however primary age children seem less likely to spread the virus and schools are implementing risk reduction measures. So it is likely to be relatively safe. One of the key things is that you need to have a discussion with the school to see what they are doing to reduce risk. This should be in line with the published government guidance. If there are any adjustments that you need to make, or you would like the school to make, then you can discuss with the school.
Is it safe to return to work?
Everyone is entitled to a risk assessment with their employer. The advice is that you should work from home if you can and you should not go into work if your workplace cannot be made Covid-safe. Kidney Care UK are working hard to try and ensure people who cannot return to their workplace have some financial support to enable them to stay at home.
You should consider how safe your specific job and the environment could be. You need to consider your individual risk and have a discussion with your kidney doctor to help decision-making. Doctors will also be able to write a letter for patients to show to employers, outlining their individual risk. Template letters are available through our coronavirus website information or as clinical resources directly on the Renal Association website
Employers must take action to try to minimise direct contact with the public. This could be using things like screens and implementing careful cleaning.
Teachers need to have a very serious discussion with their occupational health department and their school, to try to minimise numbers of people they are seeing, they should be in well-ventilated room, wash hands regularly and be careful about meetings held outside of teaching time.
Kidney patients will be amongst first groups to be offered the vaccine, although we do not know when this will or which of the vaccines in development will become available.
You should get the annual flu vaccine early from your pharmacy or GP, to make sure you do not get seasonal flu. It is not live; you cannot get the flu by having it. Because you have kidney disease you get it free.
If your child receives the flu vaccine via a nasal spray, you should stay away from them a couple of days as it contains a weakened live form of the virus. Children with kidney transplants should not have the nasal spray vaccine.
Thank you to everyone who took part in the webinar and sent us questions. Thank you also to our speakers, transplant surgeon Dr Rajesh Sivaprakasam from Barts and the London hospital, UK lead for living donation Lisa Burnapp and Dr Rebecca Suckling, kidney doctor form Epsom and St Heier Hospital. The latest advice and guidance (and the infographics) are available on our coronavirus guidance page.
Kidney Care UK has advocacy officers, counsellors and financial support for people affected by kidney disease and is committed to support you through the pandemic and beyond. This includes campaigning for a package of measures to support those at work where Covid safety is a major concern. Find out more about getting support.
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