WHAT YOU SHOULD KNOW IF YOU RECEIVED A LETTER TELLING YOU TO STAY AT HOME FOR 12 WEEKS
Monday 27th April 2020
As will be explored later, receiving a letter asking you to follow strict ‘shielding’ guidelines is a daunting and scary prospect. Different people will feel differently about receiving the letter. Some may feel recognised, relieved and supported. Others may feel fearful and trapped. Firstly, we will run through the specifics of the letter and what exactly is being asked of you. Then we will discuss what this means in reality.
The key message is that this guidance is in place to keep you safe and there are ways to support your mental wellbeing through this challenging time.
People with certain cancers and those who have received, or are receiving, certain treatments are at risk of severe illness if they catch coronavirus. This includes:
- People with cancer who are undergoing active chemotherapy for any cancer type
- People with cancer who are undergoing radical radiotherapy for lung cancer
- People with cancers of the blood or bone marrow (such as leukaemia, lymphoma or myeloma) who are at any stage of treatment
- People having immunotherapy or other continuing antibody treatments for cancer
- People having other targeted cancer treatments which can affect the immune system, including protein kinase inhibitors or PARP inhibitors
- People who have had bone marrow or stem cell transplants in the last 6 months, or who are still taking immunosuppressive drugs
Public Health England have released guidance to strongly advise those at risk of severe illness if they catch coronavirus to rigorously follow shielding measures to keep themselves safe. You will have received a letter from the NHS with further details if you fall into this category. The letter asks you to follow the below measures for at least 12 weeks from the day you receive the letter:
- Strictly avoid contact with someone who is displaying symptoms of COVID-19, including a high temperature and/or a new and continuous cough
- Do not leave your house, except to attend essential medical appointments (your hospital team can help determine which appointments are absolutely essential)
- Do not attend any gatherings. This includes gatherings with friends and families at their homes, weddings and religious services.
- Do not go out for shopping, leisure or travel and, when arranging food or medication deliveries, these should be left at the door to minimise contact.
- Keep in touch using remote technology such as phone, internet and social media.
Of course, many of these apply to the general population with the country essentially in ‘lockdown’ currently. However, the above guidance is stricter for those at ‘high risk’ and will apply for a longer period of time – at least 12 weeks from the day you receive your letter.
It is also important to note that for others with cancer not in one of the outlined groups above, it is advised that you should be particularly stringent in following the general population social distancing measures. People’s immunity remains compromised for some time after finishing chemotherapy. If you have completed chemotherapy in the last 3 months, it may be appropriate to contact your care team to discuss your specific circumstances. In the meantime, please follow shielding guidance.
If you have not received a letter but think you should be considered as extremely vulnerable, please speak to your hospital specialist or, where this is not possible, your GP. The criteria for cancer patients were carefully defined, based on those with greatest clinical risk.
Also, some people will receive letters later than others. This is because cancer teams and GPs are reviewing patient lists to ensure everyone who needs to be has been identified and this may take some time. Around 1.3 million people in the UK have been identified as ‘high risk’. As you can imagine, it will take some time to ensure all of these people receive their letter. But also, you are not alone!
On the flip-side, if you have received a letter but do not think you should be considered as extremely vulnerable please also contact your hospital specialist or GP for further information as to why you have been identified. Some cancer patients may receive a letter because they have other conditions that place them in the highest risk cohort. And if you receive the letter more than once this may be because you have more than one condition that places you in the high risk cohort. Other factors considered are people with severe respiratory conditions, people with rare diseases and inborn errors of metabolism that significantly increase the risk of infections such as SCID, people on immunosuppressive therapies for conditions such as IBD, and women who are pregnant with significant heart disease.
Receiving one of these letters can evoke very different emotions for different people. For some, there is a sense of relief that they have been noticed and identified as high risk and therefore they may have a sense of being given ‘permission’ to protect themselves at this time. This may be particularly useful to justify working from home, or having time off from work. Yet, for others, receiving the letter may evoke feelings of fear and anxiety. For many this fear may surround the virus and the risk to their individual health at this time. For others this fear may be how shielding yourself from others for so long will impact your wellbeing and sanity. It is not an easy ask in any way and having to isolate yourself from the world for at least 12 weeks is a scary prospect for anyone. The restrictions imposed by shielding are challenging, not only for you, but your family and friends. But this is the safest thing to do to protect yourself from the illness and complications of COVID-19. And remember, this is temporary and there is a light at the end of the tunnel. This is only the new normal for now, not forever.
We have heard some people are worried that this categorisation of people may be used to determine prioritisation of treatment. This is absolutely not the case. This categorisation is simply about identifying those people most at risk from developing serious illness from COVID-19. It is also about ensuring these people can access care and support during this time including practical needs such as getting medication. If you fall ill from COVID-19, or any other condition, and require hospital treatment, you will still be treated as normal and will not be denied any intervention because you are in the shielding group.
The letter itself provides you with detailed guidance of how to follow ‘shielding’ guidelines. There is also information of how to access support to get food and medicine if you do not have a support network in place. Information on what to do if you develop symptoms of COVID-19 is clear (seek clinical advice using the NHS 111 online coronavirus service, or call NHS 111 if you do not have access to the internet, as soon as you get symptoms). Furthermore, there is advice on how the rest of your household can support you to stay safe. Other information provided includes:
How carers and support workers who come to your home can keep you safe
Wash their hands on arrival and often, and only visit if they do not have symptoms of COVID-19.
Routine medication can be delivered to you
The government is helping pharmacies to deliver prescriptions. If you do not currently have your prescriptions collected or delivered, ask someone who can pick up your prescription for you from the local pharmacy or contact your pharmacy to ask them to find a volunteer to deliver it to you.
Where possible, care will be provided by phone, email or online. If you do need to be seen in person you will be contacted to arrange your visit or a visit will be done at home.
Some clinics and appointments will be cancelled or postponed. Your hospital or clinician will contact you if any changes need to be made to your care. Please contact your clinic directly if you have any questions about a specific appointment.
Support with daily living
Please discuss your daily needs with family, friends, neighbours and your local community to see how they can support you at this difficult time. If you do not have anyone you can help, there is information on how to notify the government of this.
The letter is evidence for your employer to show that you cannot work outside the home. You do not need a fit note from your GP. There is guidance of how to access help from the benefit system.
Urgent medical attention
If you have an urgent medical question relating to your existing medical condition, please contact your specialist hospital care team directly. Where possible, you will be supported by phone or online. If your clinician decides you need to be seen in person, the NHS will contact you to arrange a visit in your home, or where necessary, treatment in hospital.
It is also advised that you prepare a single hospital bag (including your emergency contact, a list of the medications you take, any information on your planned care appointments and things you would need for an overnight stay). This will help the NHS to provide you with the best care if you need to go to the hospital as a result of COVID-19. We understand this may be a frightening prospect for many and so it is your choice whether you follow this guidance. If the preparation of a hospital bag may be too distressing for you at this stage, please consider putting your wellbeing first. For many, a positive outlook is crucial in protecting their mental health.
Looking after your mental well-being
The letter acknowledges that this is a worrying and frustrating time for everyone, but especially for those being asked to shield for 12 weeks. The letter suggests several activities to keep mentally and physically active at this time. For example, exercising at home, reading, eating well and having a window open at home.
In closing, we recognise and appreciate that if you are being asked to follow shielding guidelines for at least 12 months, this is a scary prospect. But, it is what is considered the best approach to keep you safe. Of course, it is daunting to think about not seeing loved ones face-to-face for such a long period of time. It is upsetting. However, it is more important now than ever to ensure you keep in touch with loved ones through phone calls, video calls or social media. Remember, this won’t last forever and each day is one day closer to regaining some sense of normality. Right now, keeping safe is the priority but also prioritise your mental wellbeing, keep in touch with people remotely and spend time doing things for you. Regain some control in these uncertain times and choose to spend time doing something to lift your mood whether that’s reading a book, calling your friend or dancing round the kitchen.
- One Cancer Voice: Guidance for Cancer Patients on COVID-19. Guidance developed in Partnership with NHS England. Published: 09.04.2020.
This article was accurate as of the 27th April 2020.