Source: https://mdspatientsupport.org.uk/tag/coronavirus/
Timestamp: 2020-07-14 16:17:44
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Coronavirus Archives - MDS UK Patient Support Group
Posted on 23/06/2020 at 6:55 pm.
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.”
Shielding guidance will be relaxed in stages, subject to clinical evidence. The new advice to patients will now be:
“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;
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.
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.”
“The advice to ‘shield’ will be paused.
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.
Where possible children should practise frequent hand washing and 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.
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
The UK Chief Medical Officers have raised the risk to the public from moderate to high.
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 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
Do this after you blow your nose, sneeze or cough before you eat or handle food and always immediately when you return home
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 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.
We will monitor the situation and update everyone as news and advice progresses.
Please keep checking our website.
Part 4. Travel advice about coronavirus
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, 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).
Posted on 10/06/2020 at 4:56 pm.
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.
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
The rapid guidance from NICE for systemic anti-cancer therapy in the COVID-19 outbreak should be followed
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.
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:
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.
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
Is it safe to attend hospital? Watch this video of Prof Bowen with recommendations for patients
Posted on 29/05/2020 at 6:41 pm.
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.
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
Tags: Coronavirus, MDS
Posted on 29/05/2020 at 7:44 am.
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".
Posted on 11/05/2020 at 8:27 am.
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.
Posted on 01/04/2020 at 7:00 am.
Posted on 30/03/2020 at 8:06 am.
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.
Register here and get coronavirus support as an extremely vulnerable person
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.
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.
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.
Stay VERY safe please.
Sophie, CEO and Team MDS”