Coronavirus & MDS: Advice & implications for blood cancer patients – Updated on 05/08/2020

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 England - Shielding Update 05/08/2020

The government has now decided that shielding will be relaxed, or paused, as of 1st August, including for extremely vulnerable individuals.

Patients have been advised of this change, according to the list of vulnerable individuals used to date.

Patients may be advised to shield again, if higher occurrences of COVID-19 develop in future.

In some areas of the UK, shielding is still in place, due to a higher number of COVID-19 cases, so please follow local guidance depending on where you live.

A COVID-19 risk stratification model is being developed, but there is no date yet for publication, or when it will be in full use.
We will provide further news when available.

For more details on all of the above points, and a list of FAQ – please see the information letter below:

https://www.england.nhs.uk/coronavirus/wp-content/uploads/sites/52/2020/06/C0624-shielding-letter-to-nhs.pdf

Please know you can also check with your clinical team regarding your vulnerability status, if you are unsure.

If you are working, and your employer is now insisting on a return to work, but you are not yet comfortable doing so, please be aware these measures are advisory. Speak to your HR department to clarify your situation, and explain MDS in more detail.

You can also ask your clinical team to provide a letter for your employer, specifying your level of vulnerability, and the reasons why a return to work may not be advisable in your situation.”

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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

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 - Frequently Asked Questions - Updated on 05/08/2020

These Frequently Asked Questions appeared on the latest NHS England update letter.

1. Is it really safe to stop shielding?

We have been clear that each step towards relaxing the shielding guidance should be taken carefully. People classed as clinically extremely vulnerable are still at risk of severe illness if they catch Coronavirus and should continue to take precautions, but the risk of catching Coronavirus is now sufficiently low, the Government believe that the time is now right to further relax the advice. The latest epidemiological data from the ONS COVID-19 Infection Survey shows that the chances of encountering Coronavirus in the community has continued to decline. Four weeks ago, on average only one person in 500 had the virus. Last week it was less than one in 1700. In addition, a test and trace system is now in place, including within schools, and there are robust measures in place to manage potential areas of higher risk.

2. Can I keep shielding if I want to?

The guidance for those classed as clinically extremely vulnerable continues to be advisory, and we have no plans to enforce it, so you can continue shielding if you want to. However, centrally provided food boxes and the Medicines Delivery Service will only be available while the advice is to shield, which is currently until the end of July. Beyond July, NHS Volunteer Responders can continue to help with collecting food shopping and medicines deliveries. Simply call NHS Volunteer Responders on 0808 196 3646 (8 am to 8pm) to access this support.

3. Can I go to all my hospital appointments now?

The NHS is preparing to gradually increase some important face-to-face services, but only where this can be done safely. Hospitals and other health facilities have been asked to put extra planning and protection in place for people who are at highest risk from Covid-19. These measures should be discussed with you in advance. Where possible, appointments will be offered using remote services such as a video or phone consultation. If you do need to attend hospital for planned (non-emergency) care, you will be asked to take some steps to ensure you can get the care you need in an environment that keeps you safe, as well as staff and other patients.

Admissions (including day surgery): if you are being admitted to hospital, you and any members of your household will be asked to isolate at home for 14 days prior. Where possible, you may be asked to complete a test within 72 hours before going to hospital. If you are unable to isolate effectively or be tested before coming to hospital, your admission may be rescheduled. This will be determined by your care team using clinical judgement and in consultation with you. Admissions teams will give you all the information you need when booking you.

Outpatient appointments: you should only attend your outpatient appointment if you have no symptoms of Coronavirus. While at the hospital/health facility, it is important that you comply with normal social distancing requirements.

4. Can I return to work?

Until the end of July, if you have been able to work at home, you should continue to do so. At this time, we do not advise clinically extremely vulnerable individuals to attend their place of 6 work (workplace/’onsite’) if this requires them to leave their home. This guidance remains advisory. From 1 August the Government is planning to further relax advice to those shielding, bringing it in line with the advice to the clinically vulnerable group. This means that if they are unable to work from home but can work on site, they should do so, provided the business is COVID-safe.

5. What if I don’t want to return to work?

You should look to come to an agreement with your employer and understand their specific policies around health and safety and workplace attendance, especially in relation to COVID19. If you have concerns about your health and safety at work, you can raise them with any union safety representatives, or ultimately with the organisation responsibility for enforcement in your workplace, either the Health and Safety Executive or your local authority. You can get advice on your specific situation and your employment rights by visiting the Acas website https://www.acas.org.uk/contact or calling the Acas helpline, 0300 123 1100.

6. I still need help with my food shopping?

Those in receipt of centrally provided food boxes, who continue to need help, will receive this support while they are advised to shield, until the end of July. This will give those shielding the time to adapt to advice that visiting shops, including supermarkets, is likely to be as safe as when they stopped these usual daily activities, provided they follow social distancing advice. Beyond July, NHS Volunteer Responders can continue to help with collecting food shopping. Simply call NHS Volunteer Responders on 0808 196 3646 (8 am to 8pm) to access this support. The Government also continues to support the use of priority delivery slots to help the clinically most vulnerable where possible. Priority delivery slots are at the discretion of supermarkets, but we can confirm that seven supermarkets have given access to priority supermarket delivery slots that will continue beyond the end of July for those already signed up for support.

7. Can my children go back to school?

From 1 August the Government is planning to further relax advice to those shielding, bringing it in line with the advice to the clinically vulnerable group. This means that children can return to school/nursey. Where possible children should maintain social distancing and try and practise good, frequent hand washing. The latest advice can be found on GOV.UK.

8. When might you bring shielding back?

The latest scientific evidence shows that the chances of encountering Coronavirus in the community has continued to decline. The Government regularly monitors this position and if the rates of infection in the community rise, then it may be necessary to advise that more restrictive measures should be taken.

9. What is the guidance for the clinically vulnerable?

Public safety throughout this period is the Government’s top priority – this includes keeping safe society’s most vulnerable.

We advise those who are clinically vulnerable to follow the Staying Alert and Safe social distancing guidance available on the gov.uk website.

The advice is to stay at home as much as possible and, if you do go out, take particular care to minimise contact with others outside your household or support bubble. By this we mean always staying 2m apart from others outside your household or support bubble, avoiding crowds, and keeping your hands and face as clean as possible.

10. Is the letter I’ve received real, telling me that I don’t need to shield anymore?

The letter you have received is from Government, signed by Matt Hancock and Robert Jenrick. This letter will have arrived between 24 and 26 June. You can find a copy of the letter online at gov.uk.

11. Where can I find accessible or alternative formats of my shielding letter?

Translated, BSL and easy read versions of the letter can soon be found at gov.uk. If a patient is blind or partially sighted they can access audio or braille formats by calling the RNIB helpline at 0303 123 9999.

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.

In England, you're no longer advised to shield. But there are still things you can do to protect yourself and others. You can also still get some support.

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 - Updated on August 5th

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 - Updated on August 5th

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

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.

But if you are worried, you can call 111 or use 111 online to check your risk.

If you feel unwell

If you feel unwell, contact your healthcare team as usual.

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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