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9th June 2020

Latest advice on COVID-19

The latest information from the government can be found here.

Members in Scotland can find the latest information here. Further shielding information can be found here.

Members in Wales can find the latest information here.

People in the extremely vulnerable category, which covers CLL diagnosed patients, are asked to register here.

All CLL patients should receive a letter or text from the government stating that they are in the very vulnerable category.

What you should do if you have not received a letter or text

The government have been notifying at risk patients individually. However, this may take up to 2 weeks to reach you or may not reach you at all, if there isn’t an accurate record of your diagnosis.

If you have a diagnosis of CLL, but have not received a letter or text yet, you should still follow the shielding advice below. Please call your GP in the first instance, followed by your haematology team if the GP surgery are not able to help you.

Additionally, you should register yourself as high risk with your local support services (see “support” below), as this may trigger a letter to be sent to you.

Latest advice for all CLL patients

We are aware that there has been some confusion over what CLL patients should be doing during the current viral pandemic. The following advice is important, and we would urge all CLL patients to follow the recommendations.

All CLL patients should now shield themselves against the possibility of catching the virus. This applies to patients on ‘watch and wait’ as well as those undergoing treatment or post-treatment.

The actions you must take to start and maintain shielding

You must not leave your house with immediate effect, including not fetching your own food or medicine, and no longer leaving the house to exercise.

Additionally, those you live with should either take the same measures and no longer leave the house or isolate themselves from you in the house. If those you live with have to continue to leave the house, you must practise social distancing from each other, including staying a certain distance from each other, sleeping separately and using shared spaces at a different time to them. NOTE: Please see the government website for full details of how to isolate yourself from others in the house

Can you sit in your garden?

You may go in your garden, provided it is not a shared garden. It is against government advice to go beyond your garden, even to exercise.

If you or someone you live with begins to have symptoms

If anybody in the house starts to show symptoms of coronavirus, then you all must start following the self-isolation guidance for suspected coronavirus. This includes separating the person displaying symptoms from other people within the household. Further details here. Once the period of self-isolation is over, the person at extra high risk must continue to self-isolate or shield themselves from anyone outside the household for the full 12 week period.

If you, the extra high-risk person, develops symptoms, government guidance is to use the 111 service, either online or by calling, to seek further advice. We advise that you also let your haematology team know, in case they have any advice for you too.

Should you leave the house for medical appointments?

If your appointment does not involve any procedures (e.g. intravenous treatments, blood tests), doctors are being encouraged to contact patients via the phone or using online means. If you have not been offered this option, please call the hospital or surgery that organised the appointment to ask if this can be done instead.

Some procedures may need to go ahead, and you will be advised if your doctor thinks it is essential to see you. Please contact your haematology team if you are unsure whether your treatment or tests will continue, as they will be best places to advise. If you must have a procedure done, such as a blood test, your specialist will be working hard to prioritise patients and make sure your risk of infection is as low as possible whilst you are in hospital.

Support if you have no one to fetch food or medicines for you

We appreciate that there have been challenges with having supermarkets deliver food at this current time. However, it is important that you do not leave your home for this, or any, purpose whilst in self-isolation.

If you have family, friends or neighbours who live within a distance reasonable to you who can deliver your food for you (as long as they are also not high risk), please ask them to if they can help. They will need to leave the items at your doorstep, and you may like to disinfect the delivery on arrival.

If you normally receive care (e.g. washing, dressing, cooking), please see the government guidance page for more information on how to maintain and arrange your care throughout self-isolation.

If you live in England, there is a help service that you can sign up to here.

NOTE: you do not need to have received your letter or text confirming that you are at extra high risk in order to sign up, you can do so now. Additionally, someone can sign up on your behalf if you are unable to access the internet.

If you live in Scotland, further information can be found here. If you live in Wales, further information can be found here.

Can you get coronavirus from packaging on deliveries or food?

According to the government’s food safety website, it is “very unlikely” that you can catch coronavirus from food. As COVID-19 is a respiratory illness, it is not known to be transmitted by exposure to food or food packaging. The Food Standards Agency (FSA) also states that cooking food at the right temperature and for the correct length of time will ensure that any harmful bacteria are killed.

According to the World Health Organisation, the risk of catching the virus that causes Covid-19 from a package that has been moved, travelled, and exposed to different conditions and temperatures is also very low. Despite the low risk of contamination, if you feel particularly anxious about the possibility of the virus spreading on food packaging you can use antibacterial wipes or disinfectant spray before storing them away in your cupboards or fridge.

It is also important to wash your hands for at least 20 seconds with soap and water after handling any packaging.

When it comes to fresh produce, such as fruits and vegetables, do not use products containing any chemicals to clean them. The NHS says: “When you wash vegetables, wash them under a running tap and rub them under water, for example in a bowl of fresh water. Start with the least soiled items first and give each of them a final rinse. Peeling or cooking fruit and vegetables can also remove bacteria”.

Will your treatment change/be delayed?

The NHS is making preparations for all urgent cancer treatment to continue. All decisions made about treatments are based on the risk and the benefits you will gain from treatment. As a CLL patient you have a weakened immune system, and the effects of some treatments can further damage it.

The decision whether your treatment is urgent, or whether it may be delayed or changed, is a decision that will be made between you and your clinician. General guidelines are being developed for doctors to help them make these decisions in the new climate, and they should explain the basis of their decisions when discussing this with you.

Coping with social distancing – what you can do

These measures are severe, but they are necessary to keep everyone as safe as possible, and to help the NHS cope with the cases that do happen.

It can feel like we have no control during this time, but there are things we can do to make it easier and help ourselves to cope better:

Practical things:

• Keep following the advice to regularly wash your hands thoroughly (for 20 seconds) with soap and water, or use a hand sanitiser, especially if you’ve just got home, are about to eat, or have just coughed or sneezed.
• Continue to avoid touching your face with your hands.
• Clean and disinfect frequently touched objects and surfaces in the home.
• Think about the things you need (food, medicines) and contact people who can help with this (family, healthcare team)
• Tell your neighbours about your situation – they may be able to help with getting food or supplies to you
• Look into local charities or local groups in your community that are offering help to people staying at home
• If you are worried about getting supplies for home and don’t have anyone nearby that can help, contact your local council.
• You should not allow visitors into your home. Deliveries should be left at your door and collected when the delivery person has left. Remember to wash your hands for 20 seconds after collecting and handling the delivery

Looking after your mental health

• Spend time doing things you enjoy like reading, cooking or other indoor hobbies
• Eat healthy, well-balanced meals and drink enough water
• Keep active
• Look for ideas of exercises you can do at home on the NHS website.
• Open your windows for fresh air, get some natural sunlight or use your garden if you have one
• Stay in touch with family and friends by phone, online or by post. Tell them that you want to be in touch during this time.

For the latest NHS information on COVID-19 click here. To learn more about the advice for the NHS organisations, click here.