Coronavirus & MDS: Advice & implications for blood cancer patients – Updated on 13/10/2020

Latest shielding advice from government: What do you need to do if you are extremely vulnerable?

Shielding guidance update from NHS England. See below the latests advice to patients:

NHS Cancer Programme - Shielding Update 13/10/2020

Dear all

We wanted to let you know that the government shielding guidance has been updated today for people deemed to be clinically extremely vulnerable:

https://www.gov.uk/government/publications/guidance-on-shielding-and-protecting-extremely-vulnerable-persons-from-covid-19/guidance-on-shielding-and-protecting-extremely-vulnerable-persons-from-covid-19

The new guidance contains:

  1. Updated advice on protecting the clinically extremely vulnerable, based on the 3-tier local COVID alert level announced by the Prime Minister last night. This advice is less restrictive than previous shielding advice.
  2. Updated and more restrictive formal shielding advice that is more targeted and will only apply in some of the worst affected areas and only for a limited period of time. People are only advised to follow this shielding advice if they receive a new written shielding notification.

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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. Travel precautions
  • Part 5. What to do if you suspect you have Coronavirus. Updated on 09/08/2020

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 - 13-10-2020

What has changed

While previous shielding guidance helped protect those most at risk from COVID-19, many people reported that they found the advice very restrictive.

Since the introduction of shielding, many new measures have been introduced in our communities, including the rule of 6, COVID-secure workplaces, and the widespread use of face coverings, all of which have reduced the need for such restrictive shielding advice.

The government also has better data on new infections and has introduced local COVID alert levels, with rules and advice based on the level of risk in a local area. This updated guidance offers additional advice to the clinically extremely vulnerable over and above local COVID alert level guidance. This new guidance aims to strike a better balance between providing practical steps to help keep you safe while reducing some of the potentially harmful impacts on mental and social wellbeing that were associated with previous strict shielding. It sets out the steps clinically extremely vulnerable people can take to protect themselves at each local COVID alert level.

In the future, the government will only reintroduce formal shielding advice in the very worst affected local areas and for a limited period of time. This will only apply to some, but not all, very high alert level areas and will be based on advice from the Chief Medical Officer. The government will write to you separately to inform you if you are advised to shield. You are not advised to follow formal shielding advice again unless you receive a new shielding notification advising you to do so. From now, refer to the new local COVID alert levels for your area.

What level of advice should you follow

Check the COVID alert level of your local area or search by postcode.

If you are required to travel into an area at a different local COVID alert level (for example to go to work or school), you should follow the guidance for whichever area has the higher alert level. For example, if you live in a medium alert area but work in a high alert area, follow the work advice for local COVID alert level: high. If you live in a high alert area but work in a medium alert area, continue to follow the advice for high alert areas.

General advice for clinically extremely vulnerable people at all local COVID alert levels

These general principles apply at all local COVID alert levels. In addition to the rules you and your community must follow at each level, you can take additional precautions to protect yourself.

Socialising inside and outside the home

Continue to maintain strict social distancing, wash your hands regularly and avoid touching your face.

Try to keep the number of social interactions that you have low. The fewer social interactions you have, the lower your risk of catching COVID-19.

Continue to observe strict social distancing with anyone outside of your household or support bubble. The more you socially distance from others, the less likely you are to catch COVID-19. You do not need to maintain social distancing within your home with members of your household but should stay at least 2 metres away from other people visiting your home.

If the rules allow you to meet with others outside your household, your risk of catching COVID-19 is lower if you meet them outdoors. If you meet indoors, keep the area well ventilated with fresh air, for example by opening the window.

Try to reduce the amount of time you spend in settings where you are unable to maintain social distancing, or where other people’s activities may reduce the likelihood of individuals maintaining social distancing.

Work

Everyone is currently advised to work from home where possible.

If you need support to work at home or in the workplace 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 work from home, you can still go to work. However, if you live or work in an area where formal shielding advice has been put in place, and you have received a new shielding notification informing you of this, we advise that you do not go to work.

Your employer is required to take steps to reduce the risk of exposure to COVID-19 in the workplace and should be able to explain to you the measures they have put in place to keep you safe at work.

Where employers are not managing the risk of COVID-19, the Health and Safety Executive (HSE) and local authorities will take action which can range from the provision of specific advice, issuing enforcement notices, stopping certain work practices until they are made safe and, where businesses fail to comply with enforcement notices, this could lead to prosecution.

If you have concerns about your health and safety at work you can raise them with your workplace union, the Health and Safety Executive or your local authority.

Consider how to get to and from work. If you need to use public transport, you must wear a face covering unless you are exempt. Consider travelling outside peak hours to reduce the number of people with whom you come into contact.

If you have concerns you can get advice on your specific situation and your employment rights by visiting the Acas website or calling the Acas helpline on 0300 123 1100.

School

The UK Chief Medical Officers have issued a statement on schools and childcare reopening which states that there is a very low rate of severe disease in children from COVID-19. Schools have their own measures in place to limit the risk of transmission which can be found in guidance on reopening of schools.

All pupils and students should continue to attend education settings at all local COVID alert levels unless they are one of the very small number of pupils or students under paediatric or other specialist care and have been advised by their GP or clinician not to attend an education setting.

Travel

If you need to travel, walk or cycle if you can. For longer journeys, or if you are unable to walk or cycle, try to minimise the number of people you come into close contact with. Travelling by car is likely to mean fewer social contacts than travelling by public transport. You should avoid sharing a car with people outside of your immediate household or support bubble.

Going to shops and pharmacies

Consider shopping or going to the pharmacy at quieter times of the day. You must wear face coverings in all shops unless you are exempt.

You might also want to ask friends, family or volunteers to collect medicines for you.

The NHS Volunteer Responders programme is available to help support those who need it. Volunteers can collect and deliver shopping, medication and other essential supplies. Call 0808 196 3646 between 8am and 8pm, 7 days a week to self-refer or visit www.nhsvolunteerresponders.org.uk for further information.

If you require additional care and support

Whatever the current local COVID alert level in your area, it is important that you continue to receive the care and support you need to help you stay safe and well. Providers of social care and medical services are making every effort to ensure services remain open and as safe as possible.

You should continue to seek support from the NHS for your existing health conditions. 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 www.nhs.uk/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.

It is also 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. They should follow social distancing guidance where close or personal contact is not required.

If your carer is a paid carer visiting you in your home, they will find information on the provision of home care and personal protective equipment (PPE) in the provision of home care guidance and PPE for care workers delivering homecare guidance. If you provide unpaid care, visit the Guidance for those who provide unpaid care to friends or family.

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, either with someone else who has previously been advised to shield or with different volunteers and transport to medical appointments.

Call 0808 196 3646 between 8am and 8pm to arrange support or visit NHS Volunteer Responders website. Speak to your health care professional to arrange transport support.

Coronavirus Structure

Coronavirus Structure

Part 2. Implications for blood cancer patients

If I have blood cancer, is there anything else I need to do?

If you are at higher risk you are advised to:

  • Be more meticulous about doing everything advised above.
  • Limit the time you spend with other people.

Learn more on the NHS Website: Who's at higher risk from coronavirus?

If you think you fall into one of the categories of extremely vulnerable people, you should discuss your concerns with your GP or hospital clinician.

Your team may find ways to reduce you spending unnecessary time in the hospital too, for example by doing more telephone consultations or offering home/local blood tests.

Many of the MDS consultants have already put such plans in place. Call your Nurse to find out if this is an option for you. 

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.

If you’ve been in contact with someone with coronavirus in the last 14 days, then you should call 111 or use 111 online (see the NHS advice on Coronavirus).

Would like a specialist MDS consultation? You can talk online, from the comfort of your home, with Prof. Bowen

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. Please also see our guidance on how to use Zoom. 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. Travel advice about coronavirus

Upcoming travel plans

The Foreign & Commonwealth Office currently advises British nationals against all but essential international travel. Travel to some countries and territories is currently exempted.

This advice is being kept under constant review. Travel disruption is still possible and national control measures may be brought in with little notice, so check our travel guidance.

The global coronavirus pandemic is ongoing. No travel is risk-free, and disruption is still possible. If you plan to travel:

  • read the coronavirus travel guidance to make sure you are prepared for your travel
  • read the Travel Advice for your destination, for information on current entry requirements and any local coronavirus measures that you will need to follow
  • sign up for email alerts for Travel Advice to ensure you are informed of any changes while you are travelling

Part 5: What to do if you suspect you have Coronavirus

Get a free NHS test today to check if you have coronavirus

You can have a test (swab test) to check if you have coronavirus (COVID-19) now. You can choose to take the test:

  • at a test site near you today and get your result tomorrow
  • with a home test kit

If you have coronavirus symptoms, apply as soon as you can. Do not wait. You need to get the test done in the first 5 days of having symptoms.

Get a test now: Apply online on GOV.UK or call 119 if you have problems using the internet.

Start now on the GOV.UK website

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.

If you’ve been in contact with someone with coronavirus, or been to a high risk area in the last 14 days, call 111 or use 111 online (see the NHS list of high risk areas).

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 – see our coronavirus advice for travellers
  • you've been in close contact with someone with coronavirus

Use the 111 coronavirus service

Learn more about the situation right now: GOV.UK: information on coronavirus and the situation in the UK

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