Have the extremely vulnerable group been forgotten?

Hi,

I just wondered if there is anyone else out there who feels as though the extremely vulnerable group, or the shielders as they were back in lockdown, have been forgotten. I may have missed something, but since there was a pause to shielding, they just never seem to be mentioned this group on the news anymore.

I’m just really surprised that, even in the areas of the country where special restrictions have been imposed, the extremely vulnerable group haven’t been told to shield again. I’m not sure if I’ve got this wrong or whether this is right.

My husband has non-hodgkins Lymphoma and was shielding until 2nd Aug when he returned to work in a supermarket. So he’s mixing with lots of other staff members and members of the public every day that he’s at work. We are lucky in that we live in a part of the country that hasn’t been hit hard by the virus, Devon, but we also have to cope with the huge amount of tourists in the area, who could be from any part of the country, or the world.

Its all such a worry and I just wish the government would re-introduce shielding, particularly to those areas who are badly affected. Does anyone else feel the same?

Thinking of you all,

Mandy xxx

2 Likes

I agree with you that it appears we have been forgotten. They are addressed locally where restrictions have been put in place but only to tell them to be extra cautious. This is what we’ve all been doing anyway. I’ve had a very short period of feeling relaxed, to a degree, however, now I am back to where I was in March before lockdown. I have a daily walk avoiding people as much as possible and walking in the middle of grass verges etc. I am not in a restricted area yet but surrounded by restricted zones. The point must surely come when they address us directly since the infection rate is now across the generations and the NHS will increasingly come under strain, the point at which we were told to shield in March.
Stay safe everyone.

1 Like

Above is a link to the Blood Cancer UK website which may help. As I understand it, shielding has been paused, which means that some of the vulnerable are able to do more, but it is a discussion that people need to have with their treatment team. Those who need it still have access to delivery slots etc. The most important things are hygiene, social distancing and wearing a mask if possible. Stay safe

1 Like

Hi everyone,

We hope you’re all well?

@Mandypandy thank you so much for starting this thread, it’s such an important issue and we’re so sorry to hear that people are feeling like this- we can only imagine how much isolation this can cause.

@Pisces56 a massive thank you for sharing this link to our information page :+1: You can find information about shielding pausing here, and it’s a page we continually review and update if ever the situation changes. And instances where there is a local lockdown, the restrictions might vary depending on the area, so we’d always recommend you all have a look at your local authority website if this does happen: https://www.gov.uk/find-local-council

and @Pisces56 you’re spot on! we would always encourage before people make changes to the way they are shielding or if you work in an area or live in an area which has restrictions imposed there, speaking with your treatment team is always a very important point of call.

We hope this helps you all? But of course! anything you’re unclear on or have further questions about, please do keep reaching out on here. You’re all also very welcome to drop us an email or contact the support line: https://bloodcancer.org.uk/support-for-you/talk-blood-cancer/

Su

1 Like

I’m pretty sure that I read somewhere that shielding is on the cards to be brought back but only to the ‘extremely vulnerable’.
My understanding is that this ‘new’ group will exclude over a million former shielders with lesser medical conditions such as asthma, and will mostly target those with more threatening conditions. Cancer patients, COPD patients and the elderly with medical problems were the main targets.
I share your frustration at the lack of current guidance but I suppose this is indicative of the indecisions of current politicians & scientists.

2 Likes

Thank you for all the helpful comments. Since starting this thread, I found an article which said that the government are currently looking at the shielding group and are in discussions about what measures to bring in for them now. Apparently they are going to tailor it more, taking into account peoples weight, age and health condition rather than have blanket advice for everyone who comes into that category. It’ll be interesting to see what they come up with. I just hope its enough to protect everyone.

4 Likes

I’d be surprised if there wasn’t another shielding period at some point during winter but hopefully it will be handled better this time instead of the one size fits all approach they took last time. My treatment are not that great so I doubt I’ll get any joy there and will need to make my own informed decision when the time comes.

1 Like

So sorry you’re feeling like this Mandy, though it’s so understandable. Did you see the blog Blood Cancer UK published on Monday calling for government to give updated guidance to people extremely clinically vulnerable to Coronavirus? https://bloodcancer.org.uk/news/government-should-give-financial-support-and-clear-guidance-people-blood-cancer/

Just in addition to this conversation around tailoring the shielding group, here’s a bit more information around the risk monitoring tool currently being worked on - https://www.nihr.ac.uk/news/new-risk-prediction-model-could-help-improve-guidance-for-people-shielding-from-covid-19/25096
It’s hoped that this risk assessment tool will enable a more nuanced approach to identifying and managing those most at risk of infection. It’s being based on real patient data and is taking into account lots of different risk factors. Our understanding is that within the first phase, having blood cancer and also, type of treatment, are being identified as risk factors. However, it doesn’t go into details about different risks depending on type of blood cancer.

As some of you already know we’ve got a blog about emerging data about different types of blood cancer and their risk from the Coronavirus Cancer Monitoring Project

2 Likes

Thank you for those links. After the briefing on Monday and yesterday’s statement by the PM it still feels as if we are being ignored. The worry is that panic sets in and we will be asked to shield straight away, not least to save the NHS! I, unexpectedly, had a hospital appointment, I am on a community monitoring programme, following a biopsy. The consultant came in to see me after I’d seen the registrar and one of the things he said was that the best thing was to avoid getting Covid at all costs because of the increased risk to me as an individual. Therefore, to then be told shielders can carry on in the paused state when clearly things are going wrong was not helpful. I live in an area surrounded by local lockdown areas. I have reverted to going out once a day for exercise, so basically back to June. I now worry about where we all stand with regards to supermarket slots and deliveries as it is obviously felt that it’s ok to go into these places. I haven’t been once as I don’t feel safe. Luckily I do not work but I feel for all those people with a blood cancer who are expected to or have to work. Our situation needs to be addressed as it is now no longer easy to get accurate information to assess our own risks.

2 Likes

Hi @Lababe, @Franko, @Mandypandy and @Johnwoolmer, yes, I was surprised that the extremely vulnerable group were not told to shield by the government yesterday, but I am happier following the health experts, my medical team and Blood Cancer UK’s advice.
Also after this year I think I know what I need to do and I am lucky enough to be able to do it. I really feel for those with all the emotional and practical dilemmas.
However it is difficult to actually get the risk into perspective.
Take care everyone

1 Like

Such useful information!

1 Like

Hi Lababe all the supermarket priority arrangements are still in place so if you were with them before you will be fine still - if you get any problems always try Iceland they are exceptionally good on providing help and have kept me going all along !! Morrison’s also good. X

2 Likes

Hi, new to the Forum. I am in remission for NHL for a couple of years now, and following the end of shielding went back to work around 4 weeks ago. This as you will all know is super anxiety inducing and very stressful for a variety of reasons.

With the numbers seemingly going up every day, I am very wary now of going to work. I see no mention of shielding anywhere in the news, and so yes I most definitely feel forgotten. I feel like unless something is announced in the next week or so, I may just have to stop going to work by my own decision, and my employer feels that may have to be the case too if things keep progressing at this rate.

The worst part is that we have no idea what the threshold is to go back to shielding. We are at record levels of cases right now (here in Scotland at least) yet there is zero communication of how and when shielding could resume. Like what is the metric?

To summarise, yes I feel forgotten. I believe the furlough should have remained for all shielding folks, it was cruel to take it away and give people a choice of risk your life to keep your job, or stay home and lose your income.

1 Like

Hi Steve a great big welcome to our community forum, I am glad you have found us. Yes, I agree with your thoughts and feelings completely, although I am in England.
I am following the health professionals, my medical team and Blood Cancer UK’s advice and keep watching their website.
I find it very difficult to work out the risk factor and find all the figures very confusing, although I do obviously see the figures rising.
We will all support each other through these Covid times.
You can contact the wonderful Blood Cancer UK Support Services Team on 0808 2080 888 10am-7pm Monday-Friday and 10am to 1pm Saturday and Sunday or via email at support@bloodcancer.org.uk if you would like to talk.
How was it going back to work 4 weeks ago?

1 Like

Hello Steve welcome and I am glad you have found this supportive site and forum, yes what confusing times it is for all - as mentioned I think we can only go with our own consultants advice for us personally and our own “gut feeling” of what’s safe for us now as direction is sadly lacking and it would seem ignored in recent days for anyone in the clinically extremely vulnerable group. As infection numbers rise it does seem the need to “self shield” and at least cut right back again on what we do is the sensible thing. Work is very difficult for anyone in this vulnerable group I think and no one should have to anxiously be going to work at risk because support is not there, what a choice between feeling it is unsafe to do our work and yet needing our wages so feeling forced to do so, what sort of choice is that ? I haven’t worked since March and still advised not to do so unless from home til next Spring - benefiting from furlough currently and let’s see after that ends.

As for other things, my consultant suggested last month that I do what I can in coming weeks amongst life whilst apart from close contact so as to enjoy some bits before rates go up again (as of course our docs have known all the time it would rise again) - I did as she suggested and now well see the wisdom of that so have enjoyed some things safely and will now be stopping the odd visits to a shop or garden centre. I just keep watching the rates in my own area (on the rise but lower than many parts i am down south at the moment we are not so high) and make my decisions from that - I can see going back to early hours dog walking soon- even the complete lack of the majority in recent weeks to keep apart when you are walking local roads or in the park makes a difference. We can only keep making wise choices for ourselves I guess. All the best

2 Likes

Hi @Steve1 and welcome to the forum! What is it you do for a living. I’m always interested to here how (or if) work places are supporting their employees?

1 Like

Hi @Jilly20. Not nice having to do all those early morning walks in the cold weather Now is it! You’re right, we have to keep ourselves safe and do what we need to to ensue that happens.

1 Like

I’ve heard people say in other non cancer forums that the vulnerable are only a small proportion of the population so why should everyone else have to be inconvenienced? The number of deaths won’t be that different to what it normally is at this time of year as most of them would probably have died anyway! The great empathy of the human race never fails to amaze me…

3 Likes

Oh wow, I’ve heard similar statements expressed too. Statements like: if they don’t feel safe they should stay at home all the time, why should the rest of us do anything different. They do not understand the makeup of the extremely clinically vulnerable and people are selfish.

3 Likes

I’m glad I haven’t come across anything like this @Franko and @Lababe! Not a nice thing to have to read. I hope they are in the minority.

1 Like