Shielders advised they are safe to go out once a day from Mon 1 June (but possibly not outside England?)

Here are my thoughts on the rather haphazardly reported news this morning:

Our lockdown has been extreme. So the news that from tomorrow we might be OK to think about going out for a walk once a day is in many ways welcome. As is the idea that the risk of catching the disease may have gone down from 1 in 40 to 1 in 1000.

But, the manner in which the news came out especially on the BBC was worrying, confusing, and rather unclear. A lot of us are by now after months of social isolation rather scared about ever going out again, in fact we may even have a full case of agoraphobia. And now that many ordinary people are going out it does seem that even some outdoor environments are going to remain unsafe. I suspect that myself and the people I am shielding with will initially simply go for a drive to somewhere nearby we think will be remote, and only get out if it seems deserted. These things are huge and not to be treated lightly.

Like many others I felt I could not safely shield at home with a wife who is a key worker. This level of sacrifice for many of us to protect our health has come with much emotional distress at times. Therefore it is so important that as Gemma Peters, CEO of Blood Cancer UK said on Sky News this afternoon, communication needs to be done in such a way that we can feel safe as well as be safe.

I am sure we will all be tuning in eagerly to the Number 10 Press conference at 4pm today for more clarity. I wonder if they will answer other questions that remain unclear. I have posed a couple o of them below in a question I have submitted for consideration to be used at the conference. I include a Facebook and Twitter version.

At one point many of us thought we were not allowed to even go into our gardens. Then it was clarified that shielding advice in the UK is just that – advice. So it was a bit infuriating to see a BBC News headline infantilising us this morning announcing we are now “allowed” outside from tomorrow. This is not house arrest thank you very much BBC, no matter how much it has felt like it at times!

Those at extremely high risk from COVID19 who live in the UK have been staying at home for ten weeks now. And despite the confusion in the BBC article this has already been extended till the end of June and we have been warned it may well go on much longer perhaps until there is a vaccine, the earliest timeframe for which is September.

This shielding effort is to protect our lives and help prevent the NHS from becoming over-run by those who are likely to get very sick if they catch this new coronavirus. It has not been easy. The shielding list was intended to include perhaps the highest risk group of all: everyone who has ever been diagnosed with a blood cancer.

There has been a lot of confusion about shielding throughout the last ten weeks, caused in part by careless initial phrasing of the paragraph from the Government’s guidance. But despite some local doctors and nurses views to the contrary the central intent was clear:

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Official UK Government Shielding Group Guidelines

  • Solid organ transplant recipients.

  • People with specific cancers:

  • people with cancer who are undergoing active chemotherapy

  • people with lung cancer who are undergoing radical radiotherapy

  • people with cancers of the blood or bone marrow such as leukaemia, lymphoma or myeloma who are at any stage of treatment [Note from me based on the way the list was constructed and commentary from experts, this is understood to have been intended to include both watch and wait and remission post treatment]

  • people having immunotherapy or other continuing antibody treatments for cancer

  • people having other targeted cancer treatments which can affect the immune system, such as protein kinase inhibitors or PARP inhibitors

  • people who have had bone marrow or stem cell transplants in the last 6 months, or who are still taking immunosuppression drugs

  • People with severe respiratory conditions including all cystic fibrosis, severe asthma and severe chronic obstructive pulmonary (COPD).

  • People with rare diseases that significantly increase the risk of infections (such as severe combined immunodeficiency (SCID), homozygous sickle cell).

  • People on immunosuppression therapies sufficient to significantly increase risk of infection.

  • Women who are pregnant with significant heart disease, congenital or acquired.

People in this group should have been contacted to tell them they are clinically extremely vulnerable.

If you’re still concerned, you should discuss your concerns with your GP or hospital clinician.


So it is rather frustrating to see the BBC omitting blood cancer completely from a list of who is supposed to shield. Some might even think that meant we had now been removed from the list which we clearly have not. Confusion can cost lives! For the first time in years I have put in a formal complaint to the BBC and contacted them more immediately via WhatsApp to put this point across, you might want to do the same.

The Telegraph article was rather clearer though still didn’t explain adequately who has been shielding or what it involves. It did include a nice quote from the Prime Minister, however, and had a much better overall tone in my view.

“I want to thank everyone who has followed the shielding guidance – it is because of your patience and sacrifice that thousands of lives have been saved.“I do not underestimate just how difficult it has been for you, staying at home for the last 10 weeks, and I want to pay tribute to your resilience.

“I will do what I can, in line with the scientific advice, to continue making life easier for you over the coming weeks and months.”Boris Johnson

Source: https://www.telegraph.co.uk/news/2020/05/30/millions-shielded-people-can-meet-one-friend-family-member-monday/

Here is my question as submitted to the Number 10 Press Office. Hopefully whether this is selected or not some answers will be forthcoming at the press conference which will be live on BBC at 4pm today:-

I am Adrian Warnock. I have been strictly shielding due to blood cancer. Do you agree that it was irresponsible for the BBC to announce this inaccurately this morning, talking about it as rules rather than advice, since we have been “allowed” to make our own assessment and go out all along? Can you clarify the science behind the change since so many people are out now it may still be high risk in some areas for us to go walking? Also can you confirm that who should be on the list has not changed? Will the timing be extended & should shielders be being paid as furlongs workers?

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Government shielding statement sounding a much better tone. Acknowledes the young, the worker stating we should only go out if we feel safe. Also that it is ADVICE not RULES

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Thanks Adrian. You post is very clear and helpful.

All the best,

Peter

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This is not applicable to Us Blood Cancer patients in Scotland. Please make this clear!!!

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Hi @Adrian, @Dyslexicprof and @Moravian, extremely shocked, confused, anxious etc. here. I am going to consider firstly what my treatment team advice is, the NHS advice, Blood Cancer UK and probably await seeing if there is a second wave of the virus as so much easing of lockdown appears to be coming at once. Our welfare is key.

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That wasn’t made clear today. I thought they were speaking as the UK government? It is all getting rather confusing for sure. I suppose we have to remember that this is ADVICE anyway and make our own assessment depending on where we live and how likely we are to be able to do this safely. We plan on getting up early tomorrow and trying to find a deserted spot in the car and only getting out if nobody is around. Some people have been doing that themselves on their own initiative.

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Did you see the actual announcement? That was a lot more clear and balanced I thought than the BBC News. Gemma has been great on SKY (who gave her longer than the BBC too). I must say that BBC News has disappointed me today. I gave them an opportunity to redeem themselves and they havent, got a reply from the reporter who whinged that she wasn’t working today…I best not repeat aloud my thoughts when I read that!

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My first walk in over ten weeks shielding for bloodcancer Drove early to a big open space with wide paths (not a narrow forest walk!) Hoped people would still be in bed. We were ready to go home if we didnt feel safe. Priceless. I can recommend this if you feel safe to do so. If you have any concerns do discuss this with your team. Nobody should feel pressure to do something they dont feel comfortable with. If you have concerns do also call the blood cancer UK support helpline. Click here to watch a video of my adventure: https://www.youtube.com/watch?v=S3d5qGG3XGQ

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After seeing the chaos and mess left at the weekend pre lockdown easing I have no wish to join the outside world yet. I know that I struggle walking far anyway, and fishermen and cyclists use the towpath on the canal nearby…so no way to have a quiet walk. The steep path up to the canal is a challenge too.
The important thing is to read BCUK updates, speak to your medical team, and to weigh up what is best for you. Each of us has different circumstances, and we should respect each other’s choice. Stay safe, and stay calm

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Really good advice, @pisces, I am going to let the dust settle for a couple of weeks to check there isn’t a second wave of the virus before venturing out. Stay safe whatever you choose to do everyone, we are all so special.

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Totally agree that there is no one size fits all. People will need to move slowly even if they do feel safe to go out. It is actually quite scary to go out for the first time, and for sure some areas are NOT safe for us right now.

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I was going out in the mornings for a walk, I live in a village, right by the sea, the closest case was 12 miles away, and everyone was being careful It was fine, until people were told they could go for day trips, one went into the shop the other day, came for the day to Cornwall, from Oxford!

We have been inundated with people, not keeping distance, playing together, going in the “closed” playgrounds, breaking into the closed toilets, taking beer to the beach and partying, and the sea is a open sewer.
I have been in ever since, it’s much more of a risk out there now, than it was before the “day trips”, we have a city of 300,000 people on our doorstep, (40 min drive) many who now come to our village every day, blocking the roads, so emergency vehicles can’t get through.

It was safe, it isn’t any more

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It is really interesting hearing everyone’s personal circumstances. It must be so difficult for you being invaded and destruction caused and littering etc., out of your control. I find it different living in a town just outside Greater London as in a way no more ‘traffic’ in the summer, but local traffic goes to the green areas and river towpath. That is why I will continue to stay put till I see if there is a second wave of the virus. The main thing is that we stay safe.

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So sorry that you are one of those whose safe place is no longer. I hope that things improve for us all very soon xx

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@Erica I am so sorry to hear how you’re feeling - although, it is totally understandable. It’s really good to hear though that you’re first going to take the advice of your own treatment team.
Do remember we are here if we can support you in any way :slight_smile:

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Thank you very much for your comment @Moravian. You’re right in that this new shielding guidance only applies to England at the moment. May I ask how you’re doing?

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Definately @Pisces56, it’s so important people get the advice from their medical teams if they have any questions or concerns at all.
It’s totally understandable that you and many others have no wish to go outside yet!
It’s important for us to better understand the evidence that has led to this decision being made by the Government. Nobody should feel any obligation to go out if they don’t feel comfortable, it is certainly a personal choice as to how people manage this situation.

As with any concern about your health, we’d always recommend speaking to your treating team or GP for advice around your individual circumstances.

If it is helpful for anyone to read through, we have updated our Coronavirus web-pages to reflect the government’s updated general guidance for the shielding community - https://bloodcancer.org.uk/support-for-you/coronavirus-covid-19/looking-after-yourself-staying-home-shielding/
You can find the government web-page explaining the updated guidance, here - https://www.gov.uk/government/publications/guidance-on-shielding-and-protecting-extremely-vulnerable-persons-from-covid-19/guidance-on-shielding-and-protecting-extremely-vulnerable-persons-from-covid-19

Please be assured that Blood cancer UK are continuously monitoring the situation and will update our information if any advice relating to this were to change, though as you all know, your clinical teams will be best placed to provide advice tailored to your individual circumstances.

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Gosh @heatherthomas I can only imagine how frustrating this must be for you, and how hard it must be to feel that you can no longer go out in the place that you felt safe. Please do remember that we are here on the support line if you want to chat things through.

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