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Coronavirus and MDS: Advice and implications for blood cancer patients

Shielding advice from government – 22 June 2020 - What do you need to do if you are extremely vulnerable?

The government has issued some further changes regarding shielding and vulnerable individuals today. Measures are being put in place – according to levels of vulnerability.

Matt Hancock stated the “Everybody in the ‘clinically extremely vulnerable’ categorisation will be written to from today outlining these steps.”

Here are the main points:

Shielding guidance will be relaxed in stages, subject to clinical evidence. The new advice to patients will now be:

From 6 July:

  1. “You may, if you wish, meet in a group of up to 6 people outdoors, including people from different households, while maintaining strict social distancing;
  2. You no longer need to observe social distancing with other members of your household;
  3. In line with the wider guidance for single adult households (either an adult living alone or with dependent children under 18) in the general population, you may from this date, if you wish, also form a ‘support bubble’ with one other household. All those in a support bubble will be able to spend time together inside each other's homes, including overnight, without needing to socially distance. This is a small advisory change that brings those affected a step nearer others in their communities.
  4. However, all the other current shielding advice will remain unchanged at this time. the guidance for the clinically extremely vulnerable will be relaxed to allow shielded individuals to meet up to 5 people from other households outdoors, socially distanced, and to form support bubbles if they live alone or are a lone adult with a dependent under 18.”

From 1 August:

  1. “The advice to ‘shield’ will be paused.
  2. From this date, the Government is advising you to adopt strict social distancing rather than full shielding measures. Strict social distancing means you may wish to go out to more places and see more people but you should take particular care to minimise contact with others outside your household or support bubble.
  3. You can go to work, if you cannot work from home, as long as the business is COVID-safe;
  4. Children who are clinically extremely vulnerable can return to their education settings if they are eligible and in line with their peers.
  5. Where possible children should practise frequent hand washing and social distancing;
  6. You can go outside to buy food, to places of worship and for exercise but you should maintain strict social distancing; and
  7. You should remain cautious as you are still at risk of severe illness if you catch Coronavirus, so the advice is to stay at home where possible and, if you do go out, follow strict social distancing.”

The food and medicine boxes facilitated by the National Shielding Service will stop as of 1 August as individuals are advised they can visit shops and pharmacies.

However, other forms of support – such as priority supermarket delivery slots and the NHS Volunteers Scheme, amongst a range of local volunteer schemes – will continue.

If an individual is concerned about support after 1 August, they should contact their local authority.

The categorisation of ‘clinically extremely vulnerable’ will remain in place and people in this cohort should continue to follow the guidance specific to them, available here. After 1 August, we will continue to maintain the Shielded Patient List. We will monitor the virus continuously over the coming months and if it spreads too much, we may need to advise this group to shield again.

Shielding guidance has been and continues to be advisory.

Everybody in the ‘clinically extremely vulnerable’ categorisation will be written to from today outlining these steps.

With regards to people in employment: Matt Hancock has encouraged employers to “do the right thing” by their vulnerable employees.

Let us know if your employer has issues, or encounters difficulties in ensuring your place of employment is covid safe enough for your potential return to work.
We will be collecting evidence of issues.

Lastly - 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.

Article written by 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 - Updated on May 31st 2020

Overview - Coronavirus (COVID-19)

COVID-19 is a new illness that can affect your lungs and airways. It's caused by a virus called coronavirus.

What's the risk of coronavirus in the UK?

The UK Chief Medical Officers have raised the risk to the public from moderate to high.

Health professionals are working to contact anyone who has been in close contact with people who have coronavirus.

Symptoms of coronavirus

The symptoms of coronavirus are:

  • a cough
  • a high temperature
  • shortness of breath

But these symptoms do not necessarily mean you have the illness.

The symptoms are similar to other illnesses that are much more common, such as cold and flu.

How coronavirus is spread

Because it's a new illness, we do not know exactly how coronavirus spreads from person to person.

Similar viruses are spread in cough droplets.

It's very unlikely it can be spread through things like packages or food. 

Guidance on how to protect extremely vulnerable people from COVID-19

Extremely vulnerable people have a high risk of getting seriously ill with coronavirus (COVID-19) requiring admission to hospital.

You are extremely vulnerable if you:

  • have had an organ OR STEM CALL TRANSPLANT in the last 6 months or are still taking immunosuppressant medicine
  • are having active chemotherapy or radical radiotherapy for lung cancer
  • are having immunotherapy or other continuing antibody treatments for cancer
  • are having other targeted cancer treatments which can affect the immune system, such as protein kinase inhibitors or PARP inhibitors
  • have blood or bone marrow cancer, such as leukaemia or MDS
  • have a severe chest condition, such as cystic fibrosis, severe asthma or severe COPD.
  • have a rare disease and inborn errors of metabolism that significantly increase the risk of infections (such as SCID, homozygous sickle cell)
  • You are on immunosuppression therapies sufficient to significantly increase risk of infection.
  • You are pregnant with significant heart disease, congenital or acquired.

The NHS has identified over 1,000,000 extremely vulnerable people who should practice social shielding, and they should have all received an official letter from the NHS. If you have not received a letter or have not been contacted, but you think you fall into this group, you can  register yourself on this gov.uk website. Contact your GP or clinician after you register with this service.

It is also particularly important for people who:

  • are 70 or over – AS IS THE CASE FOR ABOUT 80% OF MDS PATIENTS
  • have a long-term condition – MDS INCLUDED
  • have a weakened immune system – AS IS THE CASE FOR MANY MDS PATIENTS

Handwashing and respiratory hygiene

There are general principles you should follow to help prevent the spread of airway and chest infections caused by respiratory viruses, including:

  • Wash your hands frequently with soap and water for at least 20 seconds or use a hand sanitiser.
  • Do this after you blow your nose, sneeze or cough before you eat or handle food and always immediately when you return home
  • Avoid touching your eyes, nose, and mouth with unwashed hands
  • Cover your cough or sneeze with a tissue, then throw the tissue in a bin
  • Clean and disinfect frequently touched objects and surfaces in the home

You can spread the virus even if you don’t have symptoms.

As the situation is changing each day, please keep checking the this Government web page, or with your healthcare team if necessary, for the most up-to-date advice.

Worried about contact with coronavirus? How to self-isolate

Call 111 or use 111 online if any of these apply to you:

  • You think you might have coronavirus or
  • You’ve been in contact with someone with coronavirus  do not leave your home. This is called self-isolation.

If you are self-isolating, you must:

  • not leave your home for any reason, other than to exercise once a day – but stay at least 2 metres (3 steps) away from other people
  • not go out to buy food or collect medicine – order them by phone or online, or ask someone else to drop them off at your home
  • not have visitors, such as friends and family, in your home
  • You can use your garden, if you have one.
  • Do not visit your GP, pharmacy or hospital.

You may need to do this for up to 14 days to help reduce the possible spread of infection.

Read more coronavirus self-isolation advice.

Treatment for coronavirus

There is currently no specific treatment for coronavirus.

Antibiotics do not help, as they do not work against viruses.

Treatment aims to relieve the symptoms while your body fights the illness.

You'll need to stay in isolation away from other people until you've recovered.

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.

The NHS should have contact by Monday 30 March 2020 if you are at particularly high risk of getting seriously ill with coronavirus to give specific advice about what to do.

If you think you fall into one of the categories of extremely vulnerable people listed bellow and you have not received a letter or been contacted by your GP, you should register here and then 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

MDS UK has taken the decision to postpone all of their local patient groups – as a precaution.

This is following the advice of our clinical team and some of the hospitals where our groups are due to meet.
We are sorry for the disruption this will no doubt cause – but we would rather be safe than sorry.

The sooner everyone acts to curb the potential spread of the virus, the quicker the epidemic will slow down.
We also do not want our patients to feel they are missing out on a meeting – because they are being cautious.

The local group coordinators have been informed and notifications are going out to all our members by email and letters.

Thank you for your cooperation and understanding.

We will monitor the situation and update everyone as news and advice progresses.
Please keep checking our website.

Part 4. Travel advice about coronavirus

Upcoming travel plans

The Foreign & Commonwealth Office (FCO) now advises British people against all non-essential travel worldwide. This advice takes effect immediately and applies initially for a period of 30 days.

The COVID-19 pandemic has led to unprecedented international border closures and other restrictions. All countries may restrict travel without notice.

If you now need to change or cancel your travel plans, follow these steps:

  1. contact your airline, travel company, cruise line or other transport and accommodation providers
  2. get in touch with your insurance provider
  3. continue to follow the NHS coronavirus guidance

The FCO was already advising against all but essential travel or all travel to some areas or countries due to risks that do not relate to COVID-19. This advice remains in place. Check FCO travel advice pages for the latest information.

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

More Information

Do not go to a GP surgery, pharmacy or hospital. Call 111 if you need to speak to someone.

Government response and action plan

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UK MDS Forum guidance during COVID-19 outbreak

Issue date – 5 June 2020
Writing group: UK MDS Forum and NCRI MDS subgroup
Consultants – please contact any member of the subgroup members for further advice if required, or:
Prof David Bowen, Lead for Writing Group, Leeds.
Dr Sally Killick, NCRI MDS chair, Bournemouth
Dr. Dominic Culligan, UK MDS Forum Chair, Aberdeen

This is a set of consensus recommendations for clinicians created to bridge the unprecedented burden that the COVID-19 pandemic is placing on the NHS. The guidance will be reviewed at the end of July 2020 and will expire when the COVID-19 infection is deemed to no longer be clinically significant for MDS patients. Click here to download these recommendations.

COVID-19 virus is highly infectious and produces severe life-threatening pneumonia. The epidemiology is becoming clearer, resulting in the definition of patient groups at highest risk for severe disease.
The general advice on MDS Patient Support Group website should be followed

https://mdspatientsupport.org.uk/coronavirus-mds-blood-cancer-advice/
The rapid guidance from NICE for systemic anti-cancer therapy in the COVID-19 outbreak should be followed

https://www.nice.org.uk/guidance/ng161
As the daily number of new cases and deaths from COVID-19 infection falls, the NHS is starting to resume stalled activity. There is considerable geographic variation in the prevalence of COVID-19 infection, and each NHS organisation must decide if continuing with the following recommendations remains appropriate for them or whether they have a sufficiently reduced COVID-19 prevalence, and the capacity and staff resources to safely resume standard management of MDS patients.

The UK MDS Forum proposes the following more specific guidance for the interventional management of MDS patients during the period of continuing risk from infection with COVID-19. There is a limited (or no clear) evidence base for the majority of these recommendations which are practical and consensus in this unprecedented time of crisis.

Hypomethylating agents - azacitidine

New diagnoses of IPSS INT-2/High patients

  • Almost all patients will become neutropenic during the first 1-3 cycles of azacitidine therapy
  • Therefore consider whether a delay in initiating azacitidine could be acceptable to the patient and clinician. In the AZA-001 registration study, only 52% patients were treated within one year of original diagnosis (which for some, may have been lower-risk). Patients’ management should be assessed by the MDT on an individual basis and then discussed with the patient. Delay may be acceptable for the following groups but this is not an exhaustive list:
    • Patients with relatively well preserved blood counts (e.g. neutrophils >1)
    • Patients with stable blood counts for the preceding 3 months and neutrophils > 1
    • Patients with lower blast count (<10%)
    • Patients lacking good-risk ‘AML’ genetic / genomic characteristics
  • If azacitidine therapy deemed immediately necessary, consider using G-CSF and / or antibiotic prophylaxis through cycles 1 & 2 in order to try to prevent hospitalisation with neutropenic sepsis.
    • Where feasible and subject to local guidelines for home administration of azacitidine, consider alternative models of care to minimise hospital attendance for azacitidine injections
    • Blood count monitoring should not be reduced, continuing per local guidelines, but samples taken in the patient’s home where possible and attendance to hospital following, based on local blood product transfusion policy.

Patients already on azacitidine

  • Beyond cycle 3, if patients are deemed to be having clinical benefit, consider increasing interval between cycles to 6 weeks, or continuing 4-weekly but reduce to 5 days azacitidine per cycle. Note that there is no trial evidence for a switch from 4-weekly to 6-weekly intervals, but there is some (under-powered) randomised trial evidence that 5-day azacitidine cycles may be less efficacious than 7-day cycles.

Lenalidomide

  • For newly diagnosed patients with isolated del(5q) MDS who may be candidates for lenalidomide therapy, defer therapy and continue transfusional support
  • For responding patients established on lenalidomide, continue therapy

Intensive chemotherapy

  • No generalised guidance can be provided other than to suggest an individual patient risk:benefit assessment for delaying intensive therapy or considering alternative lower intensity therapy in the light of likely greater risk of treatment related mortality from COVID-19 infection after intensive chemotherapy.
  • Allogeneic stem cell transplantation
  • Again no generalised guidance can be provided other than to suggest an individual patient risk:benefit assessment for delaying stem cell transplant in the light of likely greater risk of treatment related mortality from COVID-19 infection

G-CSF

  • Patients with profound neutropenia and recurrent infection may temporarily be candidates for G-CSF provided this can be self-administered and does not increase attendance to hospital.

Transfusion

  • In an attempt to reduce hospital attendance all transfusion-dependent patients should be reviewed to assess if increased intervals between transfusions is possible without significant medical risk.

Is it safe to attend hospital? Watch this video of Prof Bowen with recommendations for patients


Is it safe to go to hospital? An update for MDS patients on their treatment during Covid

NHS services are gradually returning back to some normality

However it won’t be quite the same as pre-covid times.

We asked the MDS experts to explain what patients may expect in the weeks and months to come.

And – to remind all patients that despite covid, isolation, shielding  and perhaps not seeing your usual clinical teams, it is still VERY important to communicate any changes in symptoms to the relevant clinicians.

Teams are there to assist and treat.

It is safe to attend hospital.

There are Covid free zones and hubs set up to ensure all risks are minimised as much as possible.

Please do not ignore symptoms, do not delay contacting the GP, nurses, haematologist, or A&E if the need arises.

It is safe to attend hospital.

Watch our clip with Prof Bowen explaining what to expect regarding your MDS treatment

Many thanks to Prof Bowen, and all haematology teams across the UK for their great care in such difficult times.

Keep safe, stay well – physically and emotionally!

MDS UK team

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Covid: What we’ve learned for patient care. Watch the video

Our colleagues in the USA offered a free webinar on Friday, May 22nd, 2020 on the impact of COVID-19 on the lessons learned for bone marrow failure patients and what patients should do to protect themselves from the virus.

If you haven't been able to attend the webinar, or would like to watch the presentation again, please watch the video clip below:

Mikkael Sekeres, MD, MS discussed issues related to the impact of COVID-19 on the care of bone marrow failure patients and highlighted the high importance of patients remaining at home even as more areas reduce restrictions, adapting to telemedicine, and resuming treatments that may have been delayed.

He also answered questions from webinar participants during the Q & A session.

Mikkael Sekeres, MD, MS is Professor of Medicine and Director of the Leukemia Program at the Cleveland Clinic Taussig Cancer Institute. He is a global expert on bone marrow failure diseases and an active researcher in the area of MDS and AML. Prof Sekeres recently published a book about his experience as a haematologist/oncologist entitled "When Blood Breaks Down:  Life Lessons from Leukemia".


Coronavirus: The psychological impact of the pandemic on patients, families and caregivers

Please find below the recording and the transcript from the The International Academy for Clinical Haematology (IACH) webinar, which took place on April, 2020 with Prof. Mohamad Mohty and Dr. Yolande Arnaul.

The webinar focused on the psychological aspects of the pandemic.

Dr Arnault is a clinical psychologist and practitioner. She is part of the Department of Clinical Psychology at the Paoli-Calmettes Institute. Mohamad Mohty is Professor of Haematology and head of the Haematology and Cellular Therapy Department at the Saint-Antoine Hospital.

The webinar was in French, but English subtitles are available. Please find the English transcript below.

Coronavirus: "A tsunami which we were absolutely not prepared for"

[Mohty] Welcome to Yolande, thank you so much for agreeing to participate in this webinar of the International Academy for Clinical Hematology. Thank you. I structured this discussion this evening around three main questions.

Before we talk about the impact of this epidemic or pandemic on our patients, on their families and on medical staff, I would like you to talk a little bit about the general impact that you observed in terms of preparation and mobilization.

Many people have said that we are in a state of war, others have said it's more of a test of humanity. Personally, I think it's a mixture of a lot of things. What is your opinion, your observation now, with a few weeks of hindsight into this epidemic?

[Arnault] So first of all, thank you for welcoming me to this session, I am very honoured, and maybe we can, in any case, what I can say right now is that I think we need to stay humble about everything that is happening around us. In the face of this tsunami which we were absolutely not prepared for. Nobody was.

There is different information and news about confinement extensions, day after day, week after week, which really creates an atmosphere of uncertainty which is generating anxiety and even anguish in many of us, whether we're caregivers, or the sick.

So it's very, very difficult, there is a real challenge around this pandemic, and this situation in which we are immersed. It is a real challenge because, at once, we need to take all the protective measures that everyone knows: containment, barriers, etc etc, changes in our procedures for caring for our patients in hospitals, but also, as you said, we are at war.

Yes, we are at war, but we also must not forget all the human aspects; even psychological, that this health crisis is causing for everyone.

So it's a real challenge to make sure that we can come out of this crisis almost unscathed, because I think people are going to be really impacted by this, even afterwards.

"One should protect one's self, respect the restrictions, everything that's being imposed on us, confinement, renunciation of our lifestyles, the overworking of caregivers in hospitals, while staying attentive to the simply human aspect of relationships. Relationships made online and through all these apps which fortunately exist in our time."

I dare not even imagine what this pandemic would have been, I don't know, 30 or 40 years ago when all that didn't exist. So it's a real challenge for us in all of that.

[Mohty] So when we discussed it a bit by phone - since naturally due to confinement we can only discuss by phone or online - several times you used the terms 'new practices' of preparation; you just mentioned the challenges of things that are completely new.

I'm perhaps reluctant to use strong terms, but are we at the stage already where we have to mourn our past lifestyles? Or are we are not there yet?

[Arnault] I think we will have to mourn our past modalities of life. That's for sure. I think we will have to learn to create new practices, new forms of relationships...for example in hospitals, tele-consultations are naturally multiplying because we try to avoid people coming to the hospital. I believe that these are practices which will stay.

[Mohty] So to my question, you raise the tele-consultation, and in fact today we realize that we can do more than 80 or 90% of our consultations by tele-consultation, there is no need to move the sick.

In your opinion, in any case in terms of a purely technical and medical plan, is that a good or a bad development?

[Arnault] I want to say both. It's a good evolution because that can allow, I don't know, a speed of exchanges and decisions. But it's also worse because patients - our patients – have the need to be in direct contact with doctors who they see as their referring doctor.

Tele-consultation, while allowing speed, a certain efficiency, is also a kind of dehumanization of relationships. And that I think is really important to keep in mind.

I think it would be extremely harmful if we rush en masse, for example, into tele-consultation. Once again, patients have a real need to have a real relationship with their doctor. And I know that can be time consuming. I know that a doctor can't spend an entire hour with a patient etc etc. But he still needs real relationship.

For the patient it's a form of support, a benchmark, a form of insurance, of reassurance. The patients we follow in onco-hematology, who are extremely fragile, sick, in confinement which they're already familiar with by the way. Imagine we could only do - I don't think that's the goal - but that we could only do tele-consultations, that would be really damaging.

[Mohty] So we have already started talking about the sick, about their families, about the impact. I imagine that for several weeks many of the sick, those around them, their families, but also I imagine nurses, caregivers, other hospital staff at all levels - because it's an extremely robust chain and you need to ensure continuity of care according to the rules of the art.

The impact on patients: "The usual anxiety is amplified by COVID"

So the patients or people who reach out to you, whether they are professional or family or patients, what are they telling you? What questions are they asking you? What are the terms or phrases that come up often?

[Arnault] So what is certain given the flow of information, because we all have this over-saturation of information on covid; we turn on the radios, we hear about covid, we turn on the TV, we hear about covid. Even between us, we speak about covid. In families, when we work out, everyone is talking about covid. So we're really submerged by covid, by this sanitary crisis. So of course patients are talking about it.

Many patients tell me they've stopped watching the news because it gives them anxiety.

And suddenly what gives them anxiety when they're hospitalized is the prospect of release, for example. You know already when we decide on the release of a patient who was hospitalized for weeks after a transplant, after a leukaemia treatment, and to all of a sudden find themselves at home - these patients sometimes have the feeling of fear, of abandonment. And so now it's even more amplified by covid. If I get out – will I get infected? Do I risk going on resuscitation? I have a patient who told me 'I want to stay,' 'I want to stay here where I'm taken care of. Here there is a team of 24 people around the clock around me. At home what will become of me?'

"And so then there is a process to go through with them, to try and calm their anxieties, obviously, and also to bring them back to the reality that a patient, at some point if he can leave hospital, that's something rather positive, and he must leave. He shouldn't stay confined to the units, when given the opportunity to go home."

[Mohty] I agree, and we share the same experience. We actually saw reluctant patients who tell themselves 'I'm in a cocoon at the hospital, in a protected unit'.

But we also have the case, I got a phone call from a patient who politely apologized because he does not want to come back for his consolidation therapy for acute leukemia, because as he explained to me in a rational manner, it's heavy chemotherapy, it will weaken his immune system, and that maybe we could give ourselves a bit of time before launching into this heavy chemotherapy. And it's true I was a bit baffled with the idea as you can have a loss of luck if you don't do timely chemotherapy for acute leukemia. At the same time, his explanation was very rational and justified, because these are patients effectively at high risk for covid-19.

[Arnault] It's true that it's legitimate but that's what we have also noted in our institute: the number of patients who no longer come to appointments. Appointments for scans that are cancelled, even hospitalizations cancelled because patients are scared of coming to the hospital, because we've also always told them that the hospital is also a place of infections. To protect yourself when you come to the hospital, wear a mask etc. Things that they do regularly and that are standard in their pathology and that we've imposed upon them.

And so many patients hesitate in maintaining the continuity of treatments. And that is a danger.

I think we must communicate a lot more about that, and by the way we are starting to hear it a bit everywhere. At first everything was guided towards covid, the necessity of confinement, of keeping distance, etc. And suddenly patients holed up at home and didn't leave, which can be really damaging for patients. Because I think that when someone has acute leukemia, and has to have induction therapy, they must come to the hospital. It's not at home that it's going to be treated. So it's very serious.

[Mohty] So the patient I spoke to you about, if I had passed you the phone what would you have told him? To convince him in one way or another.

[Arnault] I would have told him that of course I understand his anxiety, that of course in the current situation these are legitimate thoughts and concerns, but that we also must know what the priorities are. It's very important to calm anxieties, but also to bring patients and those accompanying them into the reality of things. Meaning, calming a patient's anxieties doesn't necessarily mean doing what he wants.

It's also, I want to say – I'm a bit like this - the one who wakes them up, to say: attention. Your life is at stake. And in the balance of risk and reward – of should I go to the hospital or stay at home- one must really think about it. And that's something that really needs to be passed on to the patient. That's what I would have said. Because I am a bit direct. But I think sometimes it's important to be direct with patients.

The impact on caregivers: "Being a hero is something very heavy to carry"

[Mohty] But I think that's an important philosophy,I'm not a psychologist, but based on purely medical reasoning, for me it's important that the fear of covid-19 doesn't cause terrible damage to the natural progression of haematological illnesses, in terms of relapse or recurrence and the like. So that's the sick patients, but I imagine that the caregivers solicit your advice also.

What do they say, what do they think...me for example, I won't hide from you, I regularly have caregivers who I pass in the hallways, and the biggest fear they have is bringing the virus home to their families and kids. What do they tell you?

[Arnault] The same thing. The caregivers... I first want to salute them. These are incredible teams. All of them, whatever their place or role they're taking care of things, there constantly in service, they relay between them, if one is tired the other takes over, there's really an absolutely incredible solidarity from the caregivers, among them and the teams.

[Mohty] I completely agree with you and I wish to underline also that it's true, in French we have these semantics where we talk about caregivers, and the reflex is to say caregivers are basically the nurse, the doctor, the assistant... but in my mind, and I hope you share this, caregivers are actually all the players in the hospital. That includes the secretaries, the administrative staff which ensure consistent functioning, that includes the caretaker at the entrance to the hospital who plays a remarkable role in the regulation of entrances and exits of personnel, the cleaning staff, logistics staff, the people in the kitchen who make sure the staff has meals, the staff at the nursery, it really includes everyone.

[Arnault]. Everyone. Technical staff. Everyone, everyone. And it's sure that all these people you mentioned are actually on the front line, and they are overused in this unique period of pandemic. They continue to carry out their missions with a lot of courage and selflessness in conditions which can be sometimes...we haven't seen it in our centres… but conditions I saw on TV, and it absolutely shocked me; these field hospitals in the countryside, hastily mounted, these centres for resuscitation overflowing with patients.

They're also working in very particular conditions. In our departments of oncology, haematology and transplant services we were already very prepared for wearing masks etc, but now it's more so, even if we're prepared for it, not for the pandemic but for the protection of the sick from infections, it's really taking on the look of a bunker.

It's really also the barring of families from coming. There are no more families in the departments, now, there are only caregivers, only us. Whether it be nurses, nurses aides, doctors, the precautionary measures are multiplied, more than before, and repeated one thousand times in a day.

At the same time we - the doctors, nurses, aides - continue to provide treatments, but also to deal with, in a certain way, patients in terms of their morale. To support their psychological state since they're cut off from the people close to them. To be there to greet and contain the fears that are of course multiplied, the anxieties of patients.

So they are really used, overused even, and I'd like to add for the caregivers – of course it's very beautiful, this mobilization at 8pm every evening to show thanks, not only for caregivers but also for all the people who work for the community, the supermarket cashiers, the workers who continue to supply us, these people are certainly heroes.

But I want to say that being a hero is something very heavy to carry. Meaning when we're heroes, we don't complain, if we have fears or we're not well, we shouldn't show it, because we are heroes. And I think that long term that risks having an impact, you know what I mean?

I think really we must be very attentive, we will need to be extremely attentive to the impact in the aftermath of this period, because people are becoming exhausted, they're exhausted but they continue anyway, because they're invested in a mission that's even bigger than usual, than taking care of people and protecting them.

The future after COVID: "We advance day after day, week after week"

[Mohty] Actually you're giving me a good transition to the last part of this interview that I summarised on this slide: now, what is next? What's next? Because colleagues who are virologists, epidemiologists specialised in public health, and we want to believe them that an epidemic ends eventually, and gladly so because otherwise it's catastrophic, and once all of this stops we will try to find a different rhythm from this state of emergency that you describe, from this constant mobilisation, where we don't have the right to complain, we just do the job, as said.

What's next, what do you anticipate we have to prepare, or not? Or eventually will everything go back into place easily?

[Arnault] It's complicated because we know when this began, and we don't yet know when it will end. You know it's a bit like our sick patients. They know when the illness began, but they don't know when it's going to end. We are really immersed in this uncertainty it's hard to project the future, like our patients. Like I said the beginning of my comments, we're advancing without knowing what's ahead.

We advance day after day, week after week. But when it comes to this health crisis I think we will have to really be very attentive to the impact afterwards, as I said before. That's to say that some people may be grappling with what's called post-traumatic stress. Having given so much, having held on so long. A bit like our patients who during their illness, advance from chemo to chemo, step by step. And who after, I want to say, allow themselves to finally let go, and break down. There's a level of breakdown.

And the cases of post-traumatic stress are at risk of multiplying. So it will be necessary to identify these patients, and the risk for certain patients who are more fragile that others. We are not equal when it comes to this, our fragilities, psychologies, life histories. So we need to really really be attentive to these potentially traumatising elements of this crisis, because many people will come out completely fragile on the psychological side, family side, but also the economic. Because there is also this aspect of things. We talk about recession, before it was just whispers, and now is louder when we hear news. Not only do we worry about the illness, but also for our economic future. How will I pay my credit card? Will I still have work? etc etc. So I think the psychologists, social workers are going to have their work cut out for them.

[Mohty] So these are the negative aspects, it's true, I believe this is a real disaster on different levels.

But I still want to be optimistic, is there something good that we can extract from this episode?

[Arnault] Already at the individual level, I said earlier there are people who are extremely fragile, and then there are people who have this capacity for - it's a term that everyone now knows of – resilience.

This capacity, you know this ability... in positive psychology they would talk about post-traumatic growth, it's another term that refers to resilience, the same concept. Meaning the same concept of this ability that some people have to get up from a situation that's difficult, impactful, traumatising.

The ability of certain people to create, to recreate new functions, to tap into resources in themselves, but also knowing how to use outside help to rebuild. And that really I believe in. The number of patients who are capable of that.Or if they're not immediately capable of it, psychologists, caregivers etc are there to help them move towards this. That's on an individual level.

On a global level, of course this crisis will bring us, I hope, to think of the world a little bit differently. To know how to prioritise what is important for us. Is what's important to us accumulating things in our homes? Or can we be satisfied with less, but better?

And I think confinement, this challenge we're all sharing, will make us think about that, and maybe we'll envision the post-covid period differently.

I wholeheartedly hope it happens like this and that we can create new practices, new solidarities, because we really need it.

This period which is eminently agonising and uncertain, in terms of duration, in terms of temporality. I believe that consciences are going to wake up a bit, I believe that. I think maybe we'll tackle things a bit differently and that we will not be taken over by our life before so easily, I think. I believe. We have to believe it.

[Mohty] One last word Yolande of conclusions for everyone watching us today, whether they be family, caregivers, doctors, industry players. Because the IACH has an extremely large and varied audience in over 100 different countries around the world.

If you must give us a few keywords, how can they get through this ordeal?

Arnaud: "Have confidence. In humanity, in humans. Take care of yourself, that's something that so obvious. So clear. And to stay in touch with each other, despite confinement, despite all restrictions which are our reality."

"Continue to share, to exchange, which is what we're doing right know. I find that absolutely magnificent. All these initiatives that allow us even in confinement, to share."

[Mohty] Really, thank you very much. I learned many things, and I really hope we're going draw all the positive aspects of this ordeal, to build - it may be utopian - but a better world.

Thanks again Yolande Arnaud for your words, for everything you been doing for so many years with patients with serious malignant hemopathies.


Myelodysplatic Syndromes – Advice Letter – COVID-19 (coronavirus)

31st May 2020 - Advice updated

TO ALL MDS PATIENTS AND THEIR FAMILIES

The government has lifted some shielding measures. Read here the government updated advice.

There is still limited data on the impact of these measures.

We therefore emphasize, as the guidance says, that people remain vulnerable and should continue to take precautions. See the first paragraph of the government revised guidance.

If you are feeling particularly anxious, do please maintain shielding as before.

A further revised guideline will be issued on the 15th June, by which time more data will have been acquired, giving more assurance on the reasonable steps to take. So if in doubt, or to be extra safe, wait until the 15th June.

Also, if you are going to meet 1 other person, do ensure this person understands the issues at hand, so they don't pressurise you into doing more than what is comfortable for you.

This Advice Letter was sent in hard copy to our 1250 registered MDS UK members on the 31st of March, together with our Newsletter No 11

It is divided into four sections. You can "jump" to each section by clicking on its title below.

Click here if you'd like to download and print this letter.

To Myelodysplastic Patients, Carers, Families and Friends

Dear all,

This letter is a copy of the advice letter sent over the post for those of you who can’t access the internet. This is also to explain that we compiled our Newsletter 11 before the full Covid-19 outbreak.

This is a special message and information to help you get through the next few months, in these difficult times of the coronavirus outbreak.

How are you coping? Do you have queries about how the coronavirus might impact your MDS care?

We know your care and treatment patterns may have been altered for your safety and to reduce the spread of the disease and understand why that may worry many of you.

First of all – some basic advice:

  • All MDS patients are considered extremely vulnerable so please stay at home unless told otherwise by your clinical team (please keep following the NHS guidance for blood cancer).
  • By now you should have received a letter from the NHS, with instructions for your ongoing care. Some MDS patients who are on “Watch & Wait” may not have received such a letter as their disease is considered stable. However, we advise everyone to stay at home.
  • Doctors and hospitals are adding more patients to the list of extremely vulnerable people, as not everyone has been identified yet. So do continue to follow advice for shielded patients. If you have not received a letter by Monday 30 March, contact your GP or clinical specialist for advice.
  • If you need general coronavirus assistance (and have no support from family or friends, and no internet access) you can call: Government Coronavirus support line - Telephone: 0800 028 8327
  • If you feel unwell with COVID symptoms, either call the hotline contact number for your clinical team if available, or access NHS 111 online, or call NHS 111.
  • If you are unwell for any other reason related to your MDS then contact your haematology clinical team as you would normally. DO NOT attend hospital unless you are told to by the hospital staff.
  • Try to stay calm, take control of your situation and make positive changes to prevent you or your loved ones from catching the virus. Our motto is "Keep calm, keep safe, keep corona away!"

Secondly – a SPECIAL REQUEST to you:

  • We urge patients to ask their families, friends, and colleagues to STAY AT HOME – unless they are key workers. Together, if we all co-operate, we can drastically slow the spread of the virus.
  • You can play your part and help from your home. Lead the way as, sadly, too many people are still not abiding by the advice and are endangering other citizens, as well as precious NHS staff.
  • This is the ONLY way to slow the spread down to a manageable situation.
  • Help your NHS and all clinical staff who are working to save lives. If we all co-operate and act wisely, we can get through this.

Here are ways to get and give help:

  • Helpline: Tel 020 7733 7558 - now open 24/7. If you have a query, or are unclear about your MDS status, or feel distressed or anxious - please call us. We are working from home and the line is diverted to our mobile phone.
  • Mutual support and contact with others:
  • Online: use our Facebook page and our online forum
  • Not online: Call if you wish to act as a “Buddy” for those also seeking support by telephone.We will create a circle of support.
  • Smartphone only:  explore ways to make the most of it. Try checking our website or download the application WhatsApp to increase ways to communicate; use the video camera to speak to friends and family.
  • Local support groups: we are exploring virtual patient meetings to help with the feeling of isolation – in every sense of the word. You can use your video camera to speak to one another. We will send out invitation emails soon.
  • International information: We are working with our worldwide network of cancer patient advocates to bring you the best and latest advice. We are seeing a superb cooperation across the globe, supported by all MDS experts.

Blood donations:

We need you to ask healthy friends and family to donate blood, as there is now a shortage of blood reserves worldwide, due to the coronavirus. New volunteers are urgently needed to make up for the shortfall of people who are sick with Covid-19.
With all our international MDS colleagues, we have started a world-wide campaign for blood donations.
Without an increase in new donors, it will make it difficult for blood cancer patients to receive the same level of transfusions as usual.
This will worry many of you who are transfusion dependent – but rest assured clinical staff will keep your blood counts to a medically safe level at all times.

Some good news:

• Treatment for Covid-19?
Latest news talks about at least twelve compounds being researched.
• Vaccine and mutations? Latest findings showing that the coronavirus is not mutating much. This means that a more permanent vaccine could be developed - just like - other immunisations such as those for measles, chickenpox, rubella etc. (This is unlike the flu immunisation, where the virus mutates regularly to overcome our immune system and therefore needs to be administered to people every year).
There are 44 vaccines currently being evaluated for possible use against covid-19, with two of them already at the clinical trial stage. But the path ahead is still very long.

There will be an end to this pandemic. The outbreak in China is now almost over, after 3 months, thanks to the strict measures of isolation and social distancing.

The same can happen in the UK and other countries if we all stay vigilant and all co-operate.

Please stay VERY safe. Take good care.

Sophie Wintrich
CEO, MDS UK

Public Health England
Guidance on shielding and protecting people defined on medical grounds as extremely vulnerable from COVID-19

Updated 24 March 2020

Background and scope of guidance

This guidance is for people, including children, who are at very high risk of severe illness from coronavirus (COVID-19) because of an underlying health condition, and for their family, friends and carers. It is intended for use in situations where the extremely vulnerable person is living in their own home, with or without additional support. This includes the extremely clinically vulnerable people living in long-term care facilities, either for the elderly or persons with special needs.

Shielding is a measure to protect people who are clinically extremely vulnerable by minimising all interaction between those who are extremely vulnerable and others. We are strongly advising people with serious underlying health conditions (listed below), which put them at very high risk of severe illness from coronavirus (COVID-19), to rigorously follow shielding measures in order to keep themselves safe.

What do we mean by extremely vulnerable? (MDS UK note: see MDS relevant areas in bold)

People falling into this extremely vulnerable group include:

  1. Solid organ transplant recipients.
  2. People with specific cancers:
    1. people with cancer who are undergoing active chemotherapy or radical radiotherapy for lung cancer
    2. people with cancers of the blood or bone marrow such as leukaemia, lymphoma or myeloma who are at any stage of treatment
    3. people having immunotherapy or other continuing antibody treatments for cancer
    4. people having other targeted cancer treatments which can affect the immune system, such as protein kinase inhibitors or PARP inhibitors
    5. people who have had bone marrow or stem cell transplants in the last 6 months, or who are still taking immunosuppression drugs
  3. People with severe respiratory conditions including all cystic fibrosis, severe asthma and severe COPD.
  4. People with rare diseases and inborn errors of metabolism that significantly increase the risk of infections (such as SCID, homozygous sickle cell).
  5. People on immunosuppression therapies sufficient to significantly increase risk of infection.
  6. Women who are pregnant with significant heart disease, congenital or acquired.

Shielding is for your personal protection. It is your choice to decide whether to follow the measures we advise. Individuals who have been given a prognosis of less than 6 months to live, and some others in special circumstances, could decide not to undertake shielding. This will be a deeply personal decision. We advise calling your GP or specialist to discuss this.

The NHS in England is directly contacting people with these conditions to provide further advice.

If you think you fall into one of the categories of extremely vulnerable people listed above and you have not received a letter by Sunday 29 March 2020 or been contacted by your GP, you should discuss your concerns with your GP or hospital clinician.

We understand this is an anxious time and people considered extremely vulnerable will understandably have questions and concerns. Plans are being readied to make sure you can rely on a wide range of help and support.

What you need to know

If you have an underlying health condition listed above, you are at very high risk of severe illness as a result of coronavirus (COVID-19) requiring admission to hospital.

Shielding is a practice used to protect extremely vulnerable people from coming into contact with coronavirus.

You are strongly advised to stay at home at all times and avoid any face-to-face contact for a period of at least 12 weeks from the day you receive your letter. Please note that this period of time could change.

Visits from people who provide essential support to you such as healthcare, personal support with your daily needs or social care should continue, but carers and care workers must stay away if they have any of the symptoms of coronavirus (COVID-19). You may find this guidance on home care provision useful. All people coming to your home should wash their hands with soap and water for at least 20 seconds on arrival to your house and often while they are there.

You should have an alternative list of people who can help you with your care if your main carer becomes unwell. You can also contact your local council for advice on how to access care.

If you think you have developed symptoms of COVID-19 such as a new, continuous cough or fever, seek clinical advice using the NHS 111 online coronavirus service or call NHS 111. Do this as soon as you get symptoms.

If you have someone else living with you, they are not required to adopt these protective shielding measures for themselves. They should do what they can to support you in shielding and they should stringently follow guidance on social distancing, reducing their contact outside the home. If you care for but don’t actually live with someone who is extremely vulnerable, you should still stringently follow guidance on social distancing.

How do these measures differ from the social distancing guidance for vulnerable people issued?

You are strongly advised to stay at home at all times and avoid any face-to-face contact for a period of at least 12 weeks from the day you receive your letter.

People who are not clinically extremely vulnerable who have contracted coronavirus (COVID-19) and recovered will be able to go about their normal business. If you are in this group we strongly advise that you should remain at home at all times.

Symptoms

The most common symptoms of coronavirus (COVID-19) are recent onset of:

  1. new continuous cough and/or
  2. high temperature (above 37.8 °C)

 What is shielding? 

Shielding is a measure to protect extremely vulnerable people by minimising interaction between those who are extremely vulnerable and others. This means that those who are extremely vulnerable should not leave their homes, and within their homes should minimise all non-essential contact with other members of their household. This is to protect those who are at very high risk of severe illness from coronavirus (COVID-19) from coming into contact with the virus.

If you think you have a condition which makes you extremely vulnerable or have received a letter from NHS England you are strongly advised to shield yourself, to reduce the chance of getting coronavirus (COVID-19) and follow the face-to-face distancing measures below.

The measures are:

  1. Strictly avoid contact with someone who is displaying symptoms of coronavirus (COVID-19). These symptoms include high temperature and/or new and continuous cough.
  2. Do not leave your house.
  3. Do not attend any gatherings. This includes gatherings of friends and families in private spaces, for example, family homes, weddings and religious services.
  4. 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.
  5. Keep in touch using remote technology such as phone, internet, and social media.

Do use telephone or online services to contact your GP or other essential services.

We know that stopping these activities will be difficult. You should try to identify ways of staying in touch with others and participating in your normal activities remotely from your home. However, you must not participate in alternative activities if they involve any contact with other people.

This advice will be in place for at least 12 weeks from the day you receive your letter.

What should you do if you have someone else living with you?

While the rest of your household are not required to adopt these protective shielding measures for themselves, we would expect them to do what they can to support you in shielding and to stringently follow guidance on social distancing.

  1. Minimise as much as possible the time other family members spend in shared spaces such as kitchens, bathrooms and sitting areas, and keep shared spaces well ventilated.
  2. Aim to keep 2 metres (3 steps) away from people you live with and encourage them to sleep in a different bed where possible. If you can, you should use a separate bathroom from the rest of the household. Make sure you use separate towels from the other people in your house, both for drying themselves after bathing or showering and for hand-hygiene purposes.
  3. If you do share a toilet and bathroom with others, it is important that they are cleaned after use every time (for example, wiping surfaces you have come into contact with). Another tip is to consider drawing up a rota for bathing, with you using the facilities first.
  4. If you share a kitchen with others, avoid using it while they are present. If you can, you should take your meals back to your room to eat. If you have one, use a dishwasher to clean and dry the family’s used crockery and cutlery. If this is not possible, wash them using your usual washing up liquid and warm water and dry them thoroughly. If you are using your own utensils, remember to use a separate tea towel for drying these.
  5. We understand that it will be difficult for some people to separate themselves from others at home. You should do your very best to follow this guidance and everyone in your household should regularly wash their hands, avoid touching their face, and clean frequently touched surfaces.

If the rest of your household stringently follow advice on social distancing and minimise the risk of spreading the virus within the home by following the advice above, there is no need for them to also shield alongside you.

Handwashing and respiratory hygiene

There are general principles you should follow to help prevent the spread of airway and chest infections caused by respiratory viruses, including:

  1. wash your hands more often - with soap and water for at least 20 seconds or use a hand sanitiser. Do this after you blow your nose, sneeze or cough, and after you eat or handle food
  2. avoid touching your eyes, nose, and mouth with unwashed hands
  3. avoid close contact with people who have symptoms
  4. cover your cough or sneeze with a tissue, then throw the tissue in a bin
  5. clean and disinfect frequently touched objects and surfaces in the home

What should you do if you develop symptoms of coronavirus (COVID-19)?

If you develop symptoms of COVID-19 (high temperature above 37.8 °C and/or new and continuous cough), seek clinical advice using the NHS 111 online coronavirus service or call NHS111 if you don’t have internet access. In an emergency, call 999 if you are seriously ill. Do not visit the GP, pharmacy, urgent care centre or a hospital. Do this as soon as you get symptoms.

To help the NHS provide you with the best care if you need to go to hospital as a result of catching coronavirus, we ask that you prepare a single hospital bag. This should include your emergency contact, a list of the medications you take (including dose and frequency), any information on your planned care appointments and things you would need for an overnight stay (snacks, pyjamas, toothbrush, medication and so on). If you have an advanced care plan, please include that.

How can you get assistance with foods and medicines if you are shielding?

Ask family, friends and neighbours to support you and use online services. If this is not possible, then the public sector, business, charities and the general public are gearing up to help those advised to stay at home. Please discuss your daily needs during this period of staying at home with carers, family, friends, neighbours or local community groups to see how they can support you. Please visit gov.uk/coronavirus-extremely-vulnerable to register for the support that you need. This includes help with food, shopping deliveries and additional care you might need.

The government is helping pharmacies to deliver prescriptions. Prescriptions will continue to cover the same length of time as usual. If you do not currently have your prescriptions collected or delivered, you can arrange this by:

  1. Asking someone who can pick up your prescription from the local pharmacy (this is the best option, if possible).
  2. Contacting your pharmacy to ask them to help you find a volunteer (who will have been ID checked) or deliver it to you.

You may also need to arrange for collection or delivery of hospital specialist medication that is prescribed to you by your hospital care team.

If you receive support from health and social care organisations, for example, if you have care provided for you through the local authority or health care system, this will continue as normal. Your health or social care provider will be asked to take additional precautions to make sure that you are protected. The advice for formal carers is included in the home care provision.

What should you do if you have hospital and GP appointments during this period?

We advise everyone to access medical assistance remotely, wherever possible. However, if you have a scheduled hospital or other medical appointment during this period, talk to your GP or specialist to ensure you continue to receive the care you need and determine which of these appointments are absolutely essential.

It is possible that your hospital may need to cancel or postpone some clinics and appointments. You should contact your hospital or clinic to confirm appointments.

What is the advice for visitors, including those who are providing care for you?

Contact regular visitors to your home, such as friends and family to let them know that you are shielding and that they should not visit you during this time unless they are providing essential care for you. Essential care includes things like help with washing, dressing or feeding.

If you receive regular health or social care from an organisation, either through your local authority or paid for by yourself, inform your care providers that you are shielding and agree a plan for continuing your care.

If you receive essential care from friends or family members, speak to your carers about extra precautions they can take to keep you safe. You may find this guidance on home care provision useful.

Speak to your carers about backup plans for your care in case your main carer is unwell and needs to self-isolate. If you need help with care but you’re not sure who to contact, or if you do not have family or friends who can help you, you can contact your local council who will be able to help you and assess any social care needs you might have. Please visit gov.uk/coronavirus-extremely-vulnerable to register for the support that you need.

What is the advice for informal carers who provide care for someone who is extremely vulnerable?

If you are caring for someone who is extremely vulnerable due to severe illness from COVID-19, there are some simple steps that you can take to protect them and to reduce their risk at the current time. Ensure you follow advice on good hygiene:

  1. only care that is essential should be provided
  2. wash your hands on arrival and often, using soap and water for at least 20 seconds or use hand sanitiser
  3. cover your mouth and nose with a tissue or your sleeve (not your hands) when you cough or sneeze
  4. put used tissues in the bin immediately and wash your hands afterwards
  5. do not visit or provide care if you are unwell and make alternative arrangements for their care
  6. provide information on who they should call if they feel unwell, how to use NHS 111 online coronavirus service and leave the number for NHS 111 prominently displayed
  7. find out about different sources of support that could be used and accessing further advice on creating a contingency plan is available from Carers UK
  8. look after your own wellbeing and physical health during this time. Further information on this is available.

How do you look after your mental wellbeing? 

Social isolation, reduction in physical activity, unpredictability and changes in routine can all contribute to increasing stress. Many people including those without existing mental health needs may feel anxious about this impact including support with daily living, ongoing care arrangements with health providers, support with medication and changes in their daily routines.

If you are receiving services for your mental health, learning disability or autism and are worried about the impact of isolation please contact your key worker or care coordinator or provider to review your care plan. If you have additional needs please contact your key worker or care coordinator to develop a safety or crisis plan.

Understandably, you may find that shielding and distancing can be boring or frustrating. You may find your mood and feelings are affected and you may feel low, worried or have problems sleeping and you might miss being outside with other people.

At times like these, it can be easy to fall into unhealthy patterns of behaviour which in turn can make you feel worse. There are simple things you can do that may help, to stay mentally and physically active during this time such as:

  1. look for ideas of exercises you can do at home on the NHS website
  2. spend time doing things you enjoy – this might include reading, cooking, other indoor hobbies or listening to favourite radio programmes or watching TV
  3. try to eat healthy, well-balanced meals, drink enough water, exercise regularly, and try to avoid smoking, alcohol and drugs
  4. try spending time with the windows open to let in the fresh air, arranging space to sit and see a nice view (if possible) and get some natural sunlight, or get out into any private space, keeping at least 2 metres away from your neighbours and household members if you are sitting on your doorstep

Constantly watching the news can make you feel more worried. If you think it is affecting you, try to limit the time you spend watching, reading, or listening to media coverage of the outbreak. It may help to only check the news at set times or limit this to a couple of times a day.

Try to focus on the things you can control, such as your behaviour, who you speak to and who you get information from. Every Mind Matters provides simple tips and advice to start taking better care of your mental health.

If you are struggling with your mental health, please see the NHS mental health and wellbeing advice website for self-assessment, audio guides and tools that you can use. If you are still struggling after several weeks and it is affecting your daily life, please contact NHS 111 online. If you have no internet access, you should call NHS 111.

What steps can you take to stay connected with family and friends during this time?

Draw on support you might have through your friends, family and other networks during this time. Try to stay in touch with those around you over the phone, by post or online. Let people know how you would like to stay in touch and build that into your routine. This is also important in looking after your mental wellbeing and you may find it helpful to talk to them about how you are feeling if you want to.

Remember, it is okay to share your concerns with others you trust and in doing so you may end up providing support to them, too. Or you might want to try an NHS recommended helpline.

What is the advice for people living in long-term care facilities, either for the elderly or persons with special needs?

The advice also applies to extremely vulnerable persons living in long-term care facilities. Care providers should carefully discuss this advice with the families, carers and specialist doctors caring for such persons to ensure this guidance is strictly adhered to.

What is the advice for parents and schools with extremely vulnerable children?

The advice also applies to extremely vulnerable children in mainstream and special schools.

MDS Alliance

Webinar - Bone Marrow Failure and the Coronavirus (COVID-19): 15 Frequently Asked Questions

Transcribed from the AAMDSIF webinar on March 13, 2020 with Dr. Mikkael Sekeres and Dr. Isabel Schuermeyer with the Cleveland Clinic, edited for clarity and brevity.
Thanks to our colleagues from AAMDSIF for sharing this with us.

1) Is there a difference between the susceptibility to the coronavirus of patients with bone marrow failure and those who do not have bone marrow failure?

A: Bone marrow failure patients are more susceptible to infections in general, however this has not been studied enough. The reason we are focused so much on elders and people with compromised immune systems is that, if they catch the virus, it can be much more serious because they don’t have the defences to get rid of it.

2) Is there a different risk for MDS, high risk versus low risk?

A: High risk tends in general to have a more comprised immune function than low risk, so I would think that it would be slightly higher risk, but I’ve seen low risk folks who have impaired immune function. I’ve seen high risk folks who have preserved immune function.

3) Is it known which blood cells will attack viruses in general and is this the same for the coronavirus?

A: The lymphocytes are the ones that attack viral infections, but they all work together. So to simply answer your question, it’s the lymphocytes; the more complicated answer to your question is that all of our white blood cell elements work as a team to fight all sorts of infections.

4) What is the impact of COVID-19 on bone marrow failure patients who are getting active treatment? What should they do?

A: If you have a scheduled treatment, don’t skip that treatment. You still need to get treated for your bone marrow condition. If it’s an every six month follow-up or every three month follow-up, call your doctor’s office and see if the appointment is really necessary or if it can be rescheduled until the active infection cycle has passed. Your medical centre may allow you to participate in a virtual visit from your home.

5) What about medications?

A: Make sure that you have a three month supply of your medication available, and possibly arrange mail order delivery of your medications.

6) Do you have any recommendations for any type of special cleaning of fruits, vegetables, and other un-packaged foods from the grocery store?

A: Normal washing protocol for fruits and vegetables – a good rule here is the same 20 second minimum for hand washing.

7) Our father is 70, high risk MDS, and is due to start a course of EPO injections, are there any additional considerations that need to be given with the virus?

A: No more special considerations than trying to prevent getting infected with the virus. Ask how urgent it is to get started on treatment. If someone has higher risk MDS, it might be urgent to get that under control where someone with low risk MDS could wait for four weeks.

8) I had a transplant a few years ago and have normal blood values, would I still consider myself high risk or just take precautions as a healthy adult?

A: I would think transplant, even though you’re out of the real danger period for when you’re under super duper precautions, the first 100 days, the first six months, the first year post-transplant, I would still consider you high risk. I don’t know enough about your personal situation to know if you have graft versus host disease or if you’re still on some degree -of MDS suppressants. So I would err on the side of caution, consider yourself high risk.

9) My husband is having a bone marrow transplant in the next few weeks. Do you have any suggestions on how to proceed and what types of questions we should ask before making the decision to move forward?

A: Check in with your transplant centres and ask what they’re doing about this virus and if they’re screening patients beforehand. Many people can’t wait for a bone marrow transplant.
You have something that is severely compromising your bone marrow function, and transplant represents a potential chance of cure, you’ve been waiting months to get to this point to finally get to the transplant and then this virus hits. So I think some transplants centres are formally testing people before they go through with the transplant, others are assessing your symptoms and if you don’t have the symptoms, they’re giving you the go ahead for transplant.

10) Would it be helpful in any way for patients to receive a pneumonia shot?

A: Yes, if you’re due for one.

11) Is there any danger of running out of blood supplies?

A: There is a danger of a shortage.
UPDATE FROM AAMDSIF: Please refer to this briefing from the Red Cross on the national blood
shortage: https://www.redcrossblood.org/local-homepage/news/article/critical-bloodshortage-3A-red-cross-urges-blood-and-platelet-donors-to-give-now-1.html

12) Do you have any advice for newly diagnosed patients who maybe have not
started treatment yet for MDS? Would it be safe for them to start treatment?

A: It depends on the treatment you’re getting. If you have a lower risk myelodysplastic syndrome and you’re starting treatment with an erythropoiesis-stimulating agent like Procrit or Aranesp, go ahead and start the treatment. This isn’t going to affect it at all. If, on the other hand, you’re starting a treatment that may lower your white blood cell count, then I would check with your doctor about how important it is that you start that therapy right now as opposed to waiting a month or two.

13) Are there any extra supplement that patients can use to boost their immune system?

A: No. That’s a hard no.

14) What are the initial symptoms of the virus? Is it possible to have the virus without a fever?

A: Anything is possible. So the most common symptoms are fever, sore throat, and cough, but the virus can be transmitted without any symptoms at all for about five days. The one thing that doesn’t seem to be as associated with it is all the kind of stuffy nose, sneezing, runny nose that we associate with a lot of other viruses. Doesn’t mean it can’t get that, it’s just less common. So your suspicion that it’s the coronavirus should be higher in the setting of fever, cough and sore throat.

15) Are support groups helpful for patients during this time? Are there any other resources for connecting with patients for support?

A: I do think support groups can be helpful, although I would suggest that they be done virtually.

MDS UK Note: the following document was created by the UK MDS Forum, the UK group of Myelodysplastic experts, to assist all haematologists treating MDS in the UK during the Covid pandemic. Please feel free to refer to it during consultations with your haematologist. Any queries, please contact our MDS UK Helpline: Telephone: 020 7733 7558

UK MDS Forum

Guidance During COVID-19 Outbreak

COVID-19 virus is highly infectious and produces severe life-threatening pneumonia. The epidemiology is becoming clearer, resulting in the definition of patient groups at highest risk for severe disease. The general advice on Patient Support websites should be followed:

https://mdspatientsupport.org.uk/coronavirus-mds-blood-cancer-advice/

The rapid guidance from NICE for systemic anti-cancer therapy in the COVID-19 outbreak should be followed:

https://www.nice.org.uk/guidance/ng161

The UK MDS Forum proposes the following more specific guidance for the interventional management of MDS patients during the period of highest risk from infection with COVID-19. There is a limited (or no clear) evidence base for the majority of these recommendations which are practical and consensus in this unprecedented time of crisis.

Hypomethylating agents - Azacitidine

New diagnoses of IPSS INT-2/High patients

  • Almost all patients will become neutropenic during the first 1-3 cycles of azacitidine therapy
  • Therefore consider whether a delay in initiating azacitidine could be acceptable to the patient and clinician. In the AZA-001 registration study, only 52% patients were treated within one year of original diagnosis (which for some may have been lower-risk). Patients’ management should be assessed by the MDT on an individual basis and then discussed with the patient. Delay may be acceptable for the following groups but this is not an exhaustive list:
    • Patients with relatively well preserved blood counts (e.g. neutrophils >1)
    • Patients with stable blood counts for the preceding 3 months and neutrophils > 1
    • Patients with lower blast count (<10%)
    • Patients lacking good-risk ‘AML’ genetic / genomic characteristics
  • If azacitidine therapy deemed immediately necessary, consider using G-CSF and / or antibiotic prophylaxis through cycles 1 & 2 in order to try to prevent hospitalisation with neutropenic sepsis.
    • Where feasible and subject to local guidelines for home administration of azacitidine, consider alternative models of care to minimise hospital attendance for azacitidine injections
    • Blood count monitoring should not be reduced, continuing per local guidelines, but samples taken in the patient’s home where possible and attendance to hospital following, based on local blood product transfusion policy.

Patients already on azacitidine

  • Beyond cycle 3, if patients are deemed to be having clinical benefit, consider increasing interval between cycles to 6 weeks, or continuing 4-weekly but reduce to 5 days azacitidine per cycle. Note that there is no trial evidence for a switch from 4-weekly to 6-weekly intervals, but there is some (under-powered) randomised trial evidence that 5-day azacitidine cycles may be less efficacious than 7-day cycles.

Lenalidomide

  • For newly diagnosed patients with isolated del(5q) MDS who may be candidates for lenalidomide therapy, defer therapy and continue transfusional support
  • For responding patients established on lenalidomide, continue therapy

Intensive chemotherapy

  • No generalised guidance can be provided other than to suggest an individual patient risk versus benefit assessment for delaying intensive therapy or considering alternative lower intensity therapy in the light of likely greater risk of treatment related mortality from COVID-19 infection after intensive chemotherapy.

Allogeneic stem cell transplantation

  • Again no generalised guidance can be provided other than  to suggest an individual patient risk versus benefit assessment for delaying stem cell transplant in the light of likely greater risk of treatment related mortality from COVID-19 infection

G-CSF

  • Patients with profound neutropenia and recurrent infection may temporarily be candidates for G-CSF provided this can be self-administered and does not increase attendance to hospital.

Transfusion

  • In an attempt to reduce hospital attendance all transfusion-dependent patients should be reviewed to assess if increased intervals between transfusions is possible without significant medical risk.

Writing group: UK MDS Forum and NCRI MDS subgroup. Clinicians can contact any member of these working groups for further advice if required, or:

Prof David Bowen, Lead for Writing Group, Leeds

Dr Sally Killick, NCRI MDS chair, Bournemouth

Dr. Dominic Culligan, UK MDS Forum Chair, Aberdeen

This is a set of consensus recommendations created to bridge the unprecedented burden that the COVID-19 pandemic is placing on the NHS. The guidance will be reviewed at the end of May 2020 and will expire when the COVID-19 infection is deemed to no longer be clinically significant for MDS patients.

Dr Killick

Prof. Bowen

Dr. Culligan


MDS UK during the Coronavirus Crisis: request to patients & carers – 30/03/2020

Message from MDS UK team – to help each other get through the next few weeks.

Please stay home unless told otherwise by your clinical team.

A letter should have been sent to you with instructions for your ongoing care.

If you haven't been contacted, you can register on gov.uk

If you feel unwell – call your clinical team – DO NOT attend hospital.

Special Request to MDS Patients:

We urge patients to ask their families, friends, colleagues to absolutely STAY HOME – unless they are key workers of course.

Together, if we all cooperate – we can drastically slow the spread of the virus.

You can play your part and help from your home.

PLEASE do it – tell your contacts to stay home – as this is the ONLY way to slow the spread down to a manageable situation.

Help your NHS and all clinical staff working to save lives.

If we all cooperate and act wisely – we can get through this.

MDS UK Helpline:

If you feel distressed, depressed, anxious – or have a query - please call our helpline – now open 24/7: Tel 02077337558

Registrations for new MDS UK members:

As we are working from home in limited conditions – we ask you to please consult our website for all information – rather than us sending you a hard copy out by post.

We will reserve those paper copies of the Newsletters and patient booklets to people without internet access.

As the situation improves – and we can get back to the office – we will send you a pack of course.

Thank you for your understanding.

Mutual support and contact to others:

Use our Facebook page, and our online forum for mutual support.

We are working on making virtual meetings available - to help with the feeling of isolation – emotional and now physical.

Information from international sources:

We are working with all our international cancer patient advocates to bring you the best and latest advice.

We are seeing an unprecedented and superb cooperation across all our networks.

Blood donations

Please encourage people to donate blood.

We need more stocks of blood more than ever to make up for the shortfall of people who are sick.

We will post more on this shortly – to start an international campaign.

Thank you to all of you.

Stay VERY safe please.

Sophie, CEO and Team MDS”

Coronavirus Advice: Stay at Home