Coronavirus & MDS: Advice & implications for blood cancer patients – Updated on 25/02/202126 Feb. 2021
Shielding guidance: What do you need to do if you are extremely vulnerable?
Shielding guidance for those who are clinically extremely vulnerable from COVID-19 - from the Department of Health and Social Care.
See below for the latest advice to patients by the Government. Updated on 13/01/2021
This guidance is for everyone in England who has been identified as clinically extremely vulnerable. If you are in this group, you will previously have received a letter from the NHS or from your GP telling you this. You may have been advised to shield in the past.
This shielding guidance applies to clinically extremely vulnerable individuals only. Others living in a household with someone who is clinically extremely vulnerable are not advised to follow this guidance. They should instead follow the general advice and regulations set out in the national lockdown guidance that came into effect on 5 January 2021.
The clinically extremely vulnerable will get priority access to vaccination against COVID-19 before the general population and in line with the priority ordering set by the Joint Committee on Vaccination and Immunisation (JCVI). You will be contacted again by the NHS with more information on when and how you will be invited to get the vaccine.
The vaccine is likely to make an important contribution towards protecting you from COVID-19. Clinically extremely vulnerable people are expected to receive a vaccination against COVID-19 before the general population. Your local NHS will ensure that you can receive the vaccine as safely as possible, as well as any care and support needed. Even if you have had both doses of the vaccine, you should continue to follow this shielding advice, until further notice as we continue to assess the impact of vaccination among all groups. The people you live with should continue to follow the public health rules and guidance as long as they are in place, including if you have received the vaccine and also if they have received the vaccine.
If you are particularly anxious – here are a few words from the counsellor at King’s College Hospital:
General guidance doesn’t replace your own assessment of your individual circumstances or risks.
Speak with your healthcare team to collaborate on a plan for what is reasonable for you.
If loved ones want you to socialise more, you may feel a sense of peer pressure, or even guilt, if you’re unable to or don’t feel ready to.
You are not alone in this. Such feelings are natural.
Try to actively adopt a compassionate view towards yourself by acknowledging that you are doing your best in a difficult situation outside of your control.
Unfortunately, being vulnerable sometimes leads to others forgetting your sense of agency & autonomy in managing your health condition. It may be helpful to reclaim this.
It’s okay to be assertive. Gently and lovingly remind others that while they should do what they think is right for them, you will do the same for yourself.
Anxiety about uncertainty is normal.
You may have thoughts about how long this will last.
Focus on the short term. Allow some flexibility in your mind that you’ll respond to future changes when they arise.
Surabhi Chaturvedi, Psychotherapist in Haemato-Oncology, King’s College Hospital
- Part 1. Advice regarding the Coronavirus outbreak in UK
- Part 2. Implications for blood cancer patients
- Part 3. Implications for our MDS local patient group meetings
- Part 4. What to do if you suspect you have Coronavirus.
The information below has been taken from the NHS websites, as well as advice given by our scientific advisors, One Cancer Voice, Bloodwise and Leukaemia Care.
Part 1. Advice regarding the Coronavirus outbreak in UK
What has changed
COVID-19 case numbers are now very high and rising rapidly across the country, driven by the new variant of COVID-19.
Everyone in England, including those who are clinically extremely vulnerable, is required to follow the new national lockdown guidance, which has been set out by the government and applies to the whole population. These restrictions:
- Require people to stay at home, except for specific purposes
- Prevent people gathering with those they do not live with, except for specific purposes.
- Close certain businesses and venues.
- Support children and young people to learn remotely until March 8th, except for vulnerable children and the children of critical workers who may still attend school.
The new information below includes additional guidance for clinically extremely vulnerable people, to help protect you from COVID-19. We will also write to you with a version of this guidance.
These new formal shielding measures will apply across the whole of England until at least 31 March.
The new national lockdown guidance, which applies to everyone, means that you must not leave or be outside of your home and garden, except for limited purposes which are set out in that guidance.
We are advising clinically extremely vulnerable people to stay at home as much as possible.
You can still go outside for exercise or to attend health appointments, but try to keep all contact with others outside of your household to a minimum, and avoid busy areas.
You can still meet with your support bubble, but you cannot meet others you do not live with unless they are part of your support bubble. Outdoors, you can meet one person from another household for exercise. This is part of the wider national regulations that apply to everyone.
Try to stay 2 metres away from other people within your household , especially if they display symptoms of the virus or have been advised to self-isolate.
You are strongly advised to work from home because the risk of exposure to the virus in your area may currently be higher. If you cannot work from home, then you should not attend work.
You may want to speak to your employer about taking on an alternative role or change your working patterns temporarily to enable you to work from home where possible.
If you need support to work at home you can apply for Access to Work. Access to Work will provide support for the disability-related extra costs of working that are beyond standard reasonable adjustments an employer must provide.
If you cannot make alternative arrangements, your employer may be able to furlough you under the Coronavirus Job Retention Scheme, which has been extended until the end of April 2021. You should have a conversation with your employer about whether this is possible.
As you are being advised not to attend work, you may be eligible for Statutory Sick Pay (SSP) or Employment Support Allowance (ESA). The formal shielding letter you receive will act as evidence for your employer and the Department of Work and Pensions that you are advised to shield and may be eligible for SSP or ESA. Members of the household who are not clinically extremely vulnerable should continue to attend work if they are unable to work from home, in line with the wider rules set out in the national lockdown guidance.
As our knowledge of COVID-19 has grown, we now know that very few children and young people are at highest risk of severe illness due to the virus. Doctors have therefore been reviewing all children and young people who were initially identified as clinically extremely vulnerable to confirm whether they are still thought to be at highest risk.
If you have already discussed this with your child’s doctors and they have confirmed your child is still considered clinically extremely vulnerable, your child should follow this shielding advice.
Under the current national lockdown, children will learn remotely until February half term, except for vulnerable children and the children of critical workers who may still attend school.
Clinically extremely vulnerable children and young people should not attend school or other educational settings, because the risk of exposure to the virus in the community is now very high. Your school or college will make appropriate arrangements for you to be able to continue your education at home.
You are advised to stay at home as much as possible and not to travel unless essential (for example, to attend health appointments).
You are advised not to go to the shops. Use online shopping if you can, or ask others to collect and deliver shopping for you (friends and family, local volunteers or NHS Volunteer Responders).
You can register to request priority access to supermarket delivery slots, if you do not have someone you can rely on to go shopping for you. If you already have priority access to a supermarket delivery slot, that will continue – you do not need to do anything further. When registering you will be asked for your NHS number. You can find it on any letter the NHS has sent you, or on a prescription.
Registering on the site just gives you priority. It does not mean you’ll definitely get a delivery slot. If you want access to supermarket deliveries, you will also need to set up an account with at least one supermarket and book slots yourself.
If you need other forms of help, including support to register for priority access to supermarket delivery slots, you should contact your local council directly. Find out how your local council can help.
You are strongly advised not to go to a pharmacy.
In the first instance, you should ask if any friends, family or volunteers can collect medicines for you.
If friends and family are not able to collect your medicines for you, and you and/or the pharmacy are unable to arrange for a volunteer, then you will be eligible for free medicines delivery. Please contact your pharmacy to inform them that you are clinically extremely vulnerable and need your medicines delivered, and they will arrange this free of charge.
Accessing care and support
You can still receive informal care at home from people within your support bubble.
You can still receive care at home from professional social care and medical professionals.
We urge you to continue using the NHS and other health providers for your existing health conditions and any new health concerns.
You can access a range of NHS services from home, including ordering repeat prescriptions or contacting your health professional through an online consultation. To find out more visit Health at home or download the NHS App. If you have an urgent medical need, call NHS 111 or, for a medical emergency, dial 999.
If you do need to receive care in person, you can. Your local NHS services are well prepared and will put in measures to keep you safe.
It is also really important to look after your mental health. Go to the Every Mind Matters website for advice and practical steps that you can take to support your wellbeing and manage your mental health during this pandemic. If you or someone you care for are experiencing a mental health crisis, we urge you to make contact with a local health professional immediately.
Any carers or visitors who support you with your everyday needs can continue to visit. This also applies for those of a child or young person in your care. They should follow social distancing guidance where close or personal contact is not required.
You should continue to access support from local charities and organisations, as well as NHS Volunteer Responders. As well as helping with shopping and medicines delivery, NHS Volunteer Responders can help with a regular, friendly phone call, and transport to and from health appointments. Call 0808 196 3646 between 8am and 8pm to arrange support or visit NHS Volunteer Responders website.
Registering for additional support
If you need additional help to follow this guidance, your local council may be able to help. If you are advised to shield you will be able to register yourself or someone else to:
- request priority access to a supermarket delivery slot (if you have already got priority access that will continue – you do not need to do anything further)
- tell your council if you need support to follow shielding guidance, especially if you are unable to arrange this yourself or with the help of friends, family or other support networks
- make sure your details, such as your address, are up to date
When registering you will be asked for your NHS number. You can find it on any letter the NHS has sent you, or on a prescription. It is helpful if you register even if you do not have any support needs at this time. You can log in and update your needs if circumstances change at any time.
Part 2. Implications for blood cancer patients
If I have blood cancer, am I more at risk?
For many people, their body will be able to fight off coronavirus like other viruses and colds. However, coronavirus can have more serious effects on anyone who has a long-term health condition or a weakened immune system, including some people with cancer. This includes:
- People having chemotherapy, or who’ve had chemotherapy in the last 3 months.
- People having immunotherapy or other antibody treatments for cancer.
- People having targeted cancer treatments that can affect the immune system, such as protein kinase inhibitors.
- People who’ve had a bone marrow or stem cell transplant in the last 6 months, or who are still taking immunosuppression drugs.
- People with some types of blood cancer which affect the immune system, such as MDS, chronic leukaemia, lymphoma or myeloma, even if no treatment is being given.
Part 3. Implications for our MDS UK local patient group meetings
It doesn't seem likely that we shall be able to resume face-to-face meetings for a while yet.
We still want to maintain our services to you, and provide you with all the regular news about MDS, as well as giving you an opportunity to connect to one another virtually. We know how important patient to patient contact is for everyone.
We've held many online/virtual Zoom meetings. Feedback has been very positive, and patients who had not been able to attend face-to-face meetings for various reasons were able to participate. Hence, we are now offering online meetings open to all members and carers.
Whatever happens during and after the COVID-19 pandemic, we aim to maintain some virtual meetings, as it has attracted new members, who had not attending face to face meetings previously.
We are also providing nationwide meetings with particular topics which you may find of interest. Please let us know if you have any topic in mind.
Many patients have already embraced the video meeting call technology Zoom (or something similar) in order to stay in touch with family members during the lockdown. If you haven't, please contact us.
If you are a first time user of video call – please don’t worry. The first 15 minutes of each meeting will be set aside to sort out any technical issues.
Part 4: What to do if you suspect you have Coronavirus
There might not be tests available at any given time.
The NHS is experiencing very high demand for testing at the moment.
More tests, both for drive-through sites and home delivery, might be made available later. Please visit this page often.
Symptoms of coronavirus
The symptoms of coronavirus are:
- a cough
- a high temperature
- shortness of breath
These are also symptoms of other common conditions such as a regular cold, virus or flu. Having these symptoms does not necessarily mean you have coronavirus.
If you feel unwell
If you are getting a test because you have symptoms, you and anyone you live with must stay at home (self-isolate) until you get your result.
Anyone in your support bubble must also self-isolate until you get your result.
Getting help in Scotland, Wales or Northern Ireland
- Scotland: call your GP surgery or call 111 if your surgery is not open
- Wales: call 111
- Northern Ireland: call 111
Check if you need medical help
NHS 111 has an online coronavirus service that can tell you if you need medical help and advise you what to do. Use this service if:
- you think you might have coronavirus
- in the last 14 days you've been to a country or area with a high risk of coronavirus
- you've been in close contact with someone with coronavirus