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

Updated 2pm 4 June

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.

If you need to speak to your local kidney unit please be patient as they are likely to receive a high number of calls – please do keep looking at this website daily and your question may be answered without needing to speak to your kidney specialist.

As well as updating this page 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
• Summary
• 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?
• The Government COVID-19 recovery strategy
• Chronic kidney disease (CKD)
• Dialysis
• Acute Kidney Injury (AKI)
• Leaving the house
• Carers/relatives
• Children with kidney disease
• Pregnancy
• Transplantation
• Other conditions
• Medications
• Your data and research
• Employment and benefits
• Travel
• Managing anxiety and fear
• Volunteering
• Health professionals

Recent updates:

• New guidance about some changes for those of you who are shielding from COVID-19 has come out. From 1 June, people in England and Wales who have been advised to shield can start taking steps to spend time safely outdoors, if you want to. The advice is that you can go outside once a day with members of your household or, if you’re living alone, with one other person from a different household.
• If you have been advised to shield and are in England you should receive a letter by 30 June about future plans for shielding. We are seeking confirmation that this is the same for Northern Ireland and Scotland.
• The Welsh Government have published new advice recommending extremely vulnerable people continue to shield beyond the original end date of 15th June. This includes the advice that people may choose to leave their homes. They will keep the advice under review and write to people with further advice by 16 August.
• Kidney Care UK is working with the Renal Association and British Renal Society to produce information specific to kidney patients who are shielding. We will publish this as soon as available.
• Kidney Care UK has joined a number of charities in publishing an open letter to the government about the lack of clarity on current shielding measures.
• Children’s kidney doctors are working on new guidance for children with kidney disease and we will share a patient summary soon. Please speak to your hospital team if you have any questions.

Summary

• 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). The recommended measures for the extremely vulnerable have eased slightly in England and Wales.
• 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.

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.

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

Anyone in England, Wales, Scotland and Northern Ireland 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

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.

Wales: staying at home and social distancing guidance

Scotland: staying at home and social distancing guidance

Northern Ireland: staying at home and social distancing guidance

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 this period has been extended until the end of June. In Wales people are advised to continue to shield beyond the original end date of 15 June and people who are shielding in Wales will be written to with further advice by 16th August. The date will be regularly reviewed. This includes people 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.

The guidance for people who are in the shielding category in England and Wales changed from 1st June 2020 now that levels of COVID-19 in the community are lower than when the shielding advice was introduced .

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:

1. You have a transplant
2. You are on dialysis
3. If you over 70 and are on any form of immunosuppression or have been on one in the past
4. 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 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

Shielding, or self-isolation is a measure to protect people who have certain medical conditions which make them extremely vulnerable to infection by COVID-19 by minimising all interaction with other people.

Government advice for people in England and Wales who are extremely vulnerable to infection from COVID-19 and are advised to shield changed on 1st June. This is because there are fewer people with coronavirus and so the risk of catching coronavirus has reduced. This 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 visits outside to a minimum (for instance once per day).

The updated shielding advice for England is:

1. If you wish to spend time outdoors (though not in other buildings, households, or enclosed spaces) you should take extra care to minimise contact with others by keeping 2 metres apart.
2. If you choose to spend time outdoors, this can be with members of your own household. If you live alone, you can spend time outdoors with one person from another household (ideally the same person each time).
3. You should stay alert when leaving home: washing your hands regularly, maintaining social distance and avoiding gatherings of any size.
4. You should not attend any gatherings, including gatherings of friends and families in private spaces, for example, parties, weddings and religious services.
5. You should strictly avoid contact with anyone who is displaying symptoms of COVID-19 (a new continuous cough, a high temperature, or a loss of, or change in, your sense of taste or smell).

The Government is currently advising people to shield until 30 June 2020. It will review the shielding guidance by 15th and write to all shielding patients by 30th June setting out next steps.

The guidance for people in Wales who are advised to shield has also changed, with the background to change included in this written statement:

1. Those who have been shielding at home are now able to leave home to exercise or meet outside with people from another household.
2. You should maintain social distance of 2 metres and keep good hygiene when meeting outdoors. For those who are shielding, strictly following these rules is vital.
3. There are no other changes being made to the advice for those who are shielding at this stage. People who are shielding should continue to follow all the other advice previously given. You should not go shopping or attend work outside of home. You should continue to have food and medicine delivered..
4. The original period during which shielding was advised in Wales is coming to an end on 15 June. The Welsh Government have now published advice recommending people continue to shield beyond this date. They will keep the advice under review and write to people with further advice by 16 August.

For all people who are in the extremely vulnerable group who decide to go outside, it is important to follow sensible precautions, for example choosing quiet times to go outside and avoid crowds. You should also practice good hygiene (frequent hand washing for 20 seconds or using a hand sanitiser and avoiding touching things touched by others). If you live alone and meet someone from outside your household, it should always be the same person if possible.

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 guidance in Scotland and Northern Ireland for people who are advised to shield has not changed. Everyone who has been advised to shield should continue to do so. This advice is:

1. Strictly avoid contact with someone who is displaying symptoms of coronavirus (COVID-19). These symptoms include high temperature and/or new and continuous cough.
2. Do not leave your house.
3. Do not attend any gatherings. This includes gatherings of friends and families in private spaces for example family homes, weddings and religious services.*
4. 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.*
5. Keep in touch using remote technology such as phone, internet, and social media

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 (covid19@adviceni.net) 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 Government have shared the list of people in England classed as extremely vulnerable with supermarkets. Supermarkets are cross-referencing the list against registered customers and offering delivery slots to the most vulnerable, and you may therefore be contacted by your supermarket. Supermarkets are working with the Government in Wales and Scotland to see how they can do similar in those countries. In Northern Ireland, you can register for support with getting an online shopping delivery from several large supermarkets.

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 are extremely busy but supermarkets are working to increase 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.

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

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

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). It might also be that your GP or renal unit tells you that you are in this group, rather than you receiving a letter.

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.

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

The Government COVID-19 recovery strategy (11 May onwards)

On 11 May the UK Government published its strategy for how and when it will adjust its response to the COVID-19 outbreak. The measures within the strategy apply to England. The aim of the strategy is to “return life to as close to normal as possible, for as many people as possible, as fast and as fairly as possible, in a way that avoids a new epidemic, minimises lives lost and maximises health, social and economic outcomes.”

During this next phase of the response to COVID-19 existing social restrictions will gradually be replaced. Changes will be introduced slowly and the impact will be closely monitored before introducing the further changes. Any sign that the epidemic is worsening will lead to the introduction of stricter rules.

A set of questions and answers are available with more detail on different aspects of the guidance.

Key points for kidney patients are:

• If you or any member of your household shows signs of COVID-19 you must follow the same self-isolation rules.
• If you have been advised that you are in the extremely vulnerable group and are advised to shield, you must continue to follow the new shielding advice for England until the end of June
• If you have not been advised to shield, but are in one of the clinically vulnerable groups you must continue to stringently follow social-distancing guidance.

The government guidance does acknowledge how difficult it is for people who are advised to shield and explains the government will continue to review the support available and also analyse available data on the COVID-19 epidemic so that people who are at lower risk can start to ease isolation when it is safe to do so, this is called smarter shielding.

Kidney Care UK will continue to do all it can to act as a strong voice advocating for kidney patients and campaigning to ensure you have the support you need. We joined a number of charities in publishing an open letter to the government about the lack of clarity on current shielding measures.

Changes to existing measures will be announced in periodic steps in the coming weeks and months. Step 1 began on 13 May and includes the following measures (for those who are not advised to shield):

• For the foreseeable future, workers should continue to work from home rather than their normal physical workplace, wherever possible. If you cannot work from home you should travel to work if it is open. Workplaces such as hospitality and nonessential retail must remain closed. Workplaces should follow the new “COVID-19 Secure” guidelines.
• Everybody should continue to avoid public transport wherever possible and if it cannot be avoided, social distancing guidance on public transport must be followed rigorously.
• People should aim to wear a face-covering (not a clinical facemask) in enclosed spaces where social distancing is not always possible and they come into contact with others that they do not normally meet, for example on public transport or in some shops. This is not mandatory. the UK Government have produced guidance about how to wear and make a cloth face covering.
• You may exercise outside as many times each day as you wish. But you can only exercise with up to one person from outside your household. People may drive to open spaces, so long as you respect social distancing guidance while you are there. And people from England should not drive to Wales or Scotland, where different rules apply.

Step two began on 1 June. Measures include:

• A phased return to primary school starting with early years settings, year R, 1 and 6. It is hoped Year 10 and 12 pupils will have some contact with teachers before the summer holidays. 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.
• 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.
• Opening car showrooms and open air markets from 1st June and other non-essential retailers from 15th June.

The government aims to start Step Three by 4 July, subject to further detailed scientific advice, provided closer to the time, on how far they can go. It may include:

• Opening some remaining businesses, e.g. hairdressers and hospitality, where it is safe to do so.

What about other UK countries?

• In Scotland, the lockdown rules will continue except for the following changes:
  • People will be allowed to exercise more than once a day, but should stay near home to do so (starting and ending at home)
  • Garden centres can open, if they maintain physical distancing.
  • Full guidance for Scotland: staying at home and social distancing guidance
• In Wales, the lockdown rules will continue except for the following change:
  • People can exercise more than once a day
  • Full guidance for Wales: staying at home and social distancing guidance
  • Advice for those shielding has changed and people are now advised to shield beyond the original end date of 15 June. People who are shielding will be written to by 16 August with next steps.
  • From June 29, schools will begin to reopen for many pupils.
• In Northern Ireland the government have introduced some easing of lockdown for people who do not need to self isolate:
  • Groups of 4 – 6 people who do not share a household can meet outdoors maintaining social distancing. With the exception of people who are shielding, visits to immediate family allowed indoors where social distancing is possible. Large outdoor stores like garden centres can open.
  • More information on easing of restrictions in for Northern Ireland: Coronavirus recovery plan.

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.

Dialysis

I am on dialysis - am I at risk?

It is thought that 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. 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.

There is information about how patients in Wales, Scotland and Northern Ireland should register for support.

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.

The detailed roadmap issued on 11 May has summarised current guidance and support for the different health groups.

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.

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. 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.

Full details of the transport guidance (PDF)

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 and register for support through each country’s website or helpline. The Government is currently advising people to shield initially for 12 weeks, although in England this period has been extended until the end of June. Extremely vulnerable people in Wales are now advised to shield beyond the original end date of June 15th and will be written to before 16th August with next steps. 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.

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.

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. 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. 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 new guidance issued on 11th May said that all workers who cannot work from home should travel to work if their workplace is open. Workplaces such as hospitality and non-essential retail will remain closed during this first step of easing lockdown. 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.

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 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 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 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. It will keep this decision under review and also the possibility of other primary years returning to school, depending on how the epidemic develops. It is unlikely secondary schools will return before September 2020.

As part of the plan to ease lockdown measures announced on 11 May, the Government in England said that it was hoping to enable primary schools to reopen from 1 June for Reception, year 1 and year 6. It will keep this decision under review and also the possibility of other primary years returning to school, depending on how the epidemic develops. It is unlikely secondary schools will return before September 2020.

• 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.
• 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, it is hoped that schools will open for the new term on 11 August

Can I go outside at all?

Unless you are in a very high risk group and have been written to with advice about self-isolation, 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 between the UK nations but for most, you must only exercise or be outdoors with members of your own household.

England – you may leave the house for exercise as many times as you wish, you can also enjoy sports or sunbathe. You can travel by car to exercise.

Wales – you may leave your house to exercise more than once a day, but should stay near home to do so (starting and ending at home).

Scotland – you may leave your house to exercise more than once a day, but should stay near home to do so (starting and ending at home). New rules which ease the restrictions are being gradually introduced, including that from 28th May people can meet up outside with people from one other household.

Northern Ireland – you may only leave the house to exercise and you are now allowed to meet with 4-6 people from outside your household as long as you maintain social distancing.

If you have been told to shield, in Northern Ireland and Scotland you are advised to go outside in a private outdoors space only. You should keep at least 2 metres away from neighbours and members of your household. In England and Wales, you are advised that you can leave your house with a member of your household or with someone outside of your household if you live alone. You should maintain strict social distancing and follow sensible precautions if you do choose to leave your house.

Decisions about the provision of care

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

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

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

Carers/relatives

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

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 and a patient summary will be included in this guidance as soon as it is available.

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.

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.

Transplantation

Outpatient appointments

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

Living donation

At present, centres are reacting to their own local resource issues and the wishes of donors and recipients. Centres had closed their living donor programmes due to concerns about the risk of COVID-19 in both donors and recipients, but are now being encouraged to start to reopen, where it is safe to do so. This will happen slowly and you will be contacted by your unit. There is a reasonable possibility that the Living Kidney Sharing Scheme will run in October.

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 have changed. Public health measures and availability of critical care beds are posing restrictions on the NHS' ability to undertake organ transplants. Decisions to undertake transplantation are being 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. Many kidney transplant centres took 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, on 29th April, information went from the NHS to transplant centres to encourage them to restart the kidney transplant service. This likely to happen 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 will let you know about the plan for you.

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.

Other conditions

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

Medications

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.

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.

Your prescriptions

If you are self-isolating, someone else needs to collect your medicines from the pharmacy, or ask they have a local delivery service. Also do keep an eye on your supplies so you order repeat prescriptions in good time. If you are having difficulty getting your medicines we recommend contacting a local voluntary group.

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.

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

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 (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.

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).

Self-employed people

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

For immediate support, business interruption loans 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

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 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

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.

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

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

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

For health professionals

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

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

NHS Inform has published guidance for Scotland

Advice for Northern Ireland is on the Public Health Agency website

NHS Wales has published guidance on NHS Direct Wales