New Blood Cancer UK Blog - Why People with Blood Cancer are Being Told to Shield for 12 Weeks

Boris was never in control right from the start Lou.
He is totally out of his depth and floundering trying to be authoritative but not succeeding at all.
Matt Hancock the Health Minister is another of the same ilk.
I read recently that we have the weakest cabinet since the Thatcher days, very true.
I watched Nicola Sturgeons speech and was very impressed, a great shame Boris doesn’t take a leaf out of her book.
Boris is floundering and the population of the UK will suffer greatly because of his incompetence!!
Anthony

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The documents have been released and are actually quite clear. Though clearly it is difficult to begin to relax the restrictions.

We are mentioned in the big 50 page document and it says the following:

Protecting the most clinically vulnerable people

Some people have received a letter from the NHS, their clinician or their GP telling them that as a result of having certain medical conditions, they are considered to be clinically extremely vulnerable. (19)

Throughout this period, the Government will need to continue an extensive programme of shielding for this group while the virus continues to circulate. (20).

The Government will also have to adjust its protections for other vulnerable locations like prisons and care homes, based on an understanding of the risk.(21)

Those in the clinically extremely vulnerable cohort will continue to be advised to shield themselves for some time yet, and the Government recognises the difficulties this brings for those affected. Over the coming weeks, the Government will continue to introduce more support and assistance for these individuals so that they have the help they need as they stay shielded. And the Government will bring in further measures to support those providing the shield - for example, continuing to prioritise care workers for testing and protective equipment.

References

19 Advice for those who are extremely clinically vulnerable and who must shield themselves can be found 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 (no change)

20 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

21 https://www.gov.uk/government/publications/coronavirus-covid-19-adult-social-care-action-plan

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Also for example although people who are not in the vulnerable list are now allowed to travel to places like parks and beaches, tho they are expecting beaches and parks to follow social distancing and at least they are making it clear that people cannot stay even in their own second home. i.e.

1.9 Are day trips and holidays ok? Can people stay in second homes?

Day trips to outdoor open space, in a private vehicle, are permitted. You should practise social distancing from other people outside your household.

Leaving your home - the place you live - to stay at another home for a holiday or other purpose is not allowed. This includes visiting second homes.

Premises such as hotels and bed and breakfasts will remain closed, except where providing accommodation for specific reasons set out in law, such as for critical workers where required for a reason relating to their work.

https://www.gov.uk/government/publications/coronavirus-outbreak-faqs-what-you-can-and-cant-do/coronavirus-outbreak-faqs-what-you-can-and-cant-do

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Thanks, Adrian, I am not surprised at this document. Thanks for getting to grips with all 50 pages for us. Stay safe.

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I know it is difficult for the researchers to give each blood cancer a risk factor but as someone with polycythaemia vera who hasn’t received a shielding letter from the government does this research indicate having PV with hypertension on hydrox /aspirin and venesection is also a higher risk factor and should I be shielding. I think mpns are a really difficult one as some GPs dont class it as a blood cancer

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Hi @Jackgirl10 as you mentioned there are some uncertainties in the clinical community about whether certain groups of patients are at a higher risk or not, such as people with MPNs. While it’s true that these conditions and treatments don’t normally affect the immune system in a clinically significant way, coronavirus is a new virus, and we can’t say for sure that these people are definitely not at a higher risk. This is why the NHS does include people with MPNs in the higher risk group outlined above. However, our guidance can only ever be general information and your treating team is best placed to provide information tailored to your individual circumstances due to their understanding of your current health and medical history. Do contact our support line if we can be of any help 0808 2080 888 or email support@bloodcancer.org.uk.

Kind Regards
Bav

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Thanks for the reply. Does that mean blood cancer uk talk about blood cancer this includes mpns as well in general.

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@Jackgirl10 Blood Cancer UK include mpn’s in line with Government shielding guidelines, however this can only be guideline and there for recommend you speak to your treatment team to get more clarity on your particular circumstances. Hope this helps.

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Hello @Jackgirl10 I hope you’re doing okay? Just in addition to my colleague Bav’s reply to you, yes Blood Cancer UK includes MPNs under the term of blood cancers.

MPNs are classed by the World Health Organisation (WHO) as types of blood cancer. This means your care and treatment follows national cancer guidelines and you should have access to cancer support services.
If you would like to talk any of this through, please don’t hesitate to get in contact with us on the support line.
Alice

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Hi @jackgirl10, How are you doing and feeling today in these uncertain times in isolation?

just noticed on .gov website that sheilding is continuing to 30th June 2020.

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Hello @Kate welcome to the Blood Cancer UK forum! Thank you for sharing this.
Yes, the Government is currently advising people to shield until the end of June. We are not yet aware of any information about further Government plans for the shielding community after this date.
How are you doing at the moment @Kate?

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Hi @Kate, a great big welcome and I had heard that we are supposed to be shielding to the 30 June, I just presumed it was because we all started shielding on slightly different dates that this gave us all continuity and it is the end of the month. How are you doing and feeling? Please keep posting so we can all support each other through these times.

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Erica I’m sorry to be the bearer of bad news but I don’t see how we can be released at the end of June. The data is getting cleared and clearer.

Although the UK appears to be the only country going to such lengths to try and keep their blood cancer patients safe, global Chronic lymphocytic leukaemia (CLL) experts including in the USA agrees with the vital need to try and prevent patients with that blood cancer in particular from being exposed to COVID19. The Chronic lymphocytic leukaemia (CLL) Society undertook a global survey of Chronic lymphocytic leukaemia (CLL) experts which also examined how the experts are managing issues like should they stop chemo or IVIG at this time. The whole article makes fascinating reading but on the subject of this article the feedback of this group of blood cancer experts was clear and unambiguous:-

The Chronic lymphocytic leukaemia (CLL) specialists uniformly recommended strict social isolationfor patients with Chronic lymphocytic leukaemia (CLL) and emphasized the importance of primary pre-vention

https://onlinelibrary.wiley.com/doi/epdf/10.1002/ajh.25851

I personally decided to temporally move out of my family home, leaving behind my wife and five children because it did not seem possible to safely shield in that house when my wife is a key worker and some of my children are volunteering at the food bank and helping to recored online church services. I am currently staying with my elderly parents and all three of us are strictly shielding and have not left the property for any purpose whatsoever for many weeks now. As a result we feel safe and are eating together, and living as a family unit as best we can within the confines of this place as I know many of you are doing as well.

I am very worried for those who have a partner considering going back to work it a child considering going back to school. In some situations If the only way to stay safe is to break up a family unit albeit temporarily this may be worth considering even though it is a hard cost to pay but as one of my wise counsellors said to me not as big a price as my wife and kids would pay if I don’t make it through this alive.

It is rather concerning that by May the proportion of patients in ITU with a blood cancer had gone up even further and not down. It is now almost 8x what you’d expect from how Many are in the population.

This is all despite UK Blood cancer patients being urged to remain strictly isolated at home, only leaving their property to attend essential medical appointments.

Blood Cancer UK now concludes

“Research has shown that, along with organ transplantation, blood cancer is the health condition that most increases people’s risk of becoming seriously ill with coronavirus.”

Stay safe everyone and consider all options as we bed in for the long haul. Vaccines may be coming in September if we are blessed.

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When the door is opened I will be probably so institutionalised I will not want to venture out!!! When my son bounced back after many years I was really aware how our relationship reverted to type with us being the parents and him the son, although he was in his 40’s.I will be interested to hear how the relationship balance with your parents is. Hang in there.

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Hi Adrian,
many thanks for your helpful summary of the evidence and advice.
I expect you have seen this article in the Guardian “The problem with ‘shielding’ people from coronavirus? It’s almost impossible” https://www.theguardian.com/commentisfree/2020/may/29/shielding-impossible-coronavirus-testing-and-tracing It suggests that there are ways of reducing the risk that might enable us to get out a bit more, depending on our own circumstances, and appetite for risk. Would be interested to hear your views. Malcolm

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@mrbio Hi Malcolm, I hope you are doing okay? Thank you so much for sharing this.
We have been from the 1 June the shielding guidelines will be updated to advise that people who are currently shielding may wish to consider spending time outdoors once a day. This can be with members of their own household or, for people who are shielding alone, with one person from another household.
For people who do choose to go outside, they are strongly encouraged to take care to reduce contact with other people outside their household and follow social distancing guidelines.

We are continuing to closely monitor the situation, including, paying close attention to the government briefing taking place later today. As always, we will make sure to keep you all updated with new information and updates on our website and social media channels. We also really encourage hospital treating teams as a good point of call for further more specific advice.

We will keep you all updated on this, take care Malcolm, and please do let us know if you need any further support or have any further questions in the meantime, the same goes for the rest of our forum family :slight_smile:

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Thanks @SuBloodcancerUK for being there to reliably inform and support us all.

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Totally and utterly disagree with the Guardian piece which I think is irresponsible journalism at it’s WORST. We CAN be shielded. It is just really hard. Perhaps some people who are lower risk can think about going out as there are a LOT of people in. But the UK is a very population dense island and on reflection I suspect that we would have had a HUGE influx into hospitals that would have been totally overwhelmed if not for our shielding. There is an argument that maybe our shielding was more important than the general lock down. Perhaps younger fitter people could be allowed to catch the disease since so few of them get sick with it and then over time build up an immunity. Of course there is also a vaccine hopefully going to ve available in September. Apart from my careful walks I am not going to be dropping my shielding at least till we know a. if we are getting another spike (I think so) and b. whether the vaccine works (I really hope so and think it just might…will post more on why over time).

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Hi Su,
yes, I am very lucky and doing fine. Thanks for asking. I am sort of plucking up the courage to go out for careful walks as Adrian calls them. It is made more difficult because my wife and son are also incredibly concerned about me, and are shielding themselves. This is going above and beyond. I think this is why the Guardian article says shielding is “impossible”.

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Hi Adrian,

I seem to have hit a raw nerve here! I havent done any careful walks yet, but am thinking of doing so (see comment to Su). Its hard to get evidence to support taking a chance. I cant find local infection rates or really guage my extra risk from lymphoma.

I guess “impossible” is the wrong word, but it is very hard for many isn’t it!

I got a text from Scottish Government yesterday. They are doing a survey of people shieding here. Thats a big step forward I think.

Hope you are doing OK Adrian.

best wishes,
Malcolm

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