Well I understand that life needs to move on, and I don't hold a grudge against those who just want to get on with things and put covid behind them - don't we all! However, I am really concerned about the ceasing of free LFD tests. Even though the government have said they will keep free testing for the most vulnerable, there is no guarantee who will be the "lucky" few that will qualify. I know many of us lost out on the priority PCR tests so I don't hold much hope for the free LFDs. My family test every day, just so I can feel confident living in my own home and able to take part in normal family life. Even if I do qualify for free LFDs, I seriously doubt that I will get anything like enough for my family to test regularly to provide that buffer zone around me. So, does this mean back to square one, living separately to my family? Really feel that immunosuppressed people are becoming 2nd class citizens. This seemed to be summed up by one BBC report yesterday when they attempted to explain why some people would be eligible for a 5th vaccine. Was it because these people are vulnerable and need extra protection? No, apparently not. The reason given was because if enough vulnerable people get really sick, end up in hospital and die, then it will put too much pressure on the NHS - such compassion!
Covid Restrictions Lifted - Rant: Well I... - MPN Voice
Covid Restrictions Lifted - Rant
I think I’ve made my peace with the lifting of restrictions etc in April. The reality is, we can’t go on the way we are and I don’t want to succumb to ‘Covid Dread’ leaving me endlessly isolated from ‘life’.
LFTs are only helpful up to a point. Someone can test negative in the morning and positive at lunch time. I appreciate people testing before they visit me but the reality is, once I’m out and about, I have absolutely no idea if people are walking around with Covid.
I’m reassured by a fifth jab much the same as I am by the annual flu jab and I think I need to move my mindset to the same place as it is once I’ve had the flu jab.
I’m still feeling my way on this one. I will probably remain cautious avoiding crowded places like restaurants and theatres where I can’t easily choose to move away from any crowd.
Each to their own but as someone with PV on Hydroxy but with no other underlying health conditions I feel I can proceed with caution and a degree of optimism.
I agree 100% Ebot . I'm fortunate that I haven't contracted Covid once during the past two years; I've been out and about with family, friends and business contacts, living a normal if not cautious life, and I will continue to do so.
I'm actually quite relieved that it's all coming to an end.
I’ve possibly been more cautious than you but I took the view that my kids needed to live their lives (only the youngest is still at school / home) and they would remain my ‘vectors of infection’ despite regular testing etc. For that reason I curtailed my own contacts.
My teenager has been completely brilliant but Covid has really impacted on him, more than perhaps his peers because of me. For his sake we really have to move on. He’s fully vaccinated but with A levels looming I worry about him getting Covid more than me!
With vaccines and treatment programmes this is the ‘new normal’. And with spring / summer on the way the time is right.
The Government have yet to publish the details on exactly who will be eligible for the free tests but I agree with MWxxxx that it is the close friends/ family/carers of the CEV that need the tests so they don't unwittingly pass the virus on the person who is vulnerable. Not everyone will be able to afford to buy tests - so do they not see or have contact with their vulnerable loved one ? Or see them and risk giving them COVID ? As someone who is CEV and Immunosuppressed I am trying to avoid getting the virus in the first place not wanting a test to see if I have it and it's already too late ! And for those of us in work , do we continue go to work where there will be others who have COVID but are unaware ( because they cant afford to test themselves) or can't self-isolate because they won't be paid ? Or do we have to leave work and rely on benefits because it is just no longer safe for us. The Government pay lip service to "Protecting the Vulnerable" but the reality is they are once again throwing us to the wolves .
I think we have all probably had lots of contact with people at work with covid, ever since this pandemic began. 2 weeks ago I was sitting closed in on a school bus next to 4 positive cases for hours all week, I am still covid free. I think we just have to take the chance and get on with things as covid is here to stay
I know I have not had contact with anyone with covid since the pandemic began. I started isolating mid March 2020 and have worked from home ever since. I have not been on a bus or shops either and my family test regularly, so I would know if they had it. In my area of the country numbers were very low at the start and even up to the point when testing in the community began, so it is very unlikely I would have been in contact with someone with before testing commenced. I agree covid is definately here to stay and we need to find ways to deal with it. I still think free testing is the way forward for those that want it. I don't even mind paying but the potential prices quoted for tests seem extremely high, especially if you need to test everyone in your family circle regularly.
It is always difficult when responding on issues like this, because you don't want to come across as dismissing peoples views or making them feel bad for worrying.
We can only offer our own view and opinion based on what we believe.
My view is, i think it makes sense at the moment to wind it down, including the testing. I don't think the daily narrative is helpful anymore.
With the vaccines and boosters and better treatment Covid appears to be now no more dangerous than Flu might be in a normal Flu season.
Although deaths are being reported still in January average deaths were actually lower than the 5 years average (and still lower than the 5 year average pre Covid).
We have been told the majority of those needing the most critical care are unvaccinated, and I suspect that a lot of the deaths being reported are people 'with' covid not 'of' covid. The deaths vs average would support this.
I think what Covid has done is made us more aware of our surroundings and what we might catch off others. Lets face it how many of us would happily of been in the company of someone before with Flu thinking we were safe because we had had our Flu vaccine?
If Covid was to go away tomorrow do we start self isolation, testing and so on for Flu during Flu season? I think generally it wouldnt cross our minds to do so.
Of course a new variant may change things but right now, in my opinion, I am glad to see the changes that are being made made.
I am not opposed to people wanting to get back to normal, nor do I disagree in scaling things back, including lateral flow tests. But if that is the case I think the government should have laid out clearly exactly what their plan was for immunosuppressed people, including who would still qualify for free tests and how they would access them. The number you can order has already been reduced. I do however, disagree that covid is like flu. I am not at any particular risk of dying or even getting seriously ill from flu. However, the limited research does not show good outcomes for blood cancer patients or a good response to the vaccines. Until we understand our risks I feel I need to know when covid gets into my household so I can take some action to either protect myself or get access as quickly as possible to the new treatments, and that includes having a good supply of lateral flow tests. It would just be nice to think that someone somewhere was making a plan for immunosuppressed people but I am not convinced they are. However, I would be very happy to be proved wrong.
Personally as someone who easily gets pneumonia from other people's colds I realise I was teetering on 'Covid Dread' during December and January. It wasn't until I got a letter saying I might be considered for one of the new treatments and also had the 4th vaccination that I got things into better perspective. Christmas and New Year came and went plus most of January before Scotland caught up with England in disseminating the treatment information, while meantime figures were escalating.
What I think we need over the next few months is information on how effective the new treatments are for blood cancer patients and how easy it is over the 4 countries to access them - are more people having infusions or the anti viral pills etc and which are proving better? Are people having to fight for them or are we getting them as a matter of course when testing positive and contacting the appropriate decision maker? There have been a couple of posts I think about people being offered the pills and one the infusion but I feel reassurance that the system is working well again over the whole UK would alleviate a lot of anxiety.
I feel this may be the best we can hope for plus perhaps wearing FFP2/3 masks when out and about.
I don't think there is an easy solution to this. Even within this group our levels of risk vary. If I still had ET I would be cautious but not terrified. However, with MF and approaching an SCT, I freely admit to "Covid dread." My transplant nurse has pointed out that even the slightest lung damage from Covid would rule out a transplant, so obviously I would much prefer people with Covid to self isolate and everyone to continue mask wearing indoors. I don't believe that Covid can be treated like flu - people naturally self isolate with flu because it makes you feel so ill. Covid, on the other hand, is often mild and people will be out and about spreading it, with the blessing of the government.
That's a good point . Who would have thought 2 years ago that symptoms for most would be mild . And flu worse ..
I will definitely continue to sanitise and wear a FFP2 mask whilst ‘out and about.’ I do however feel I’m in a better place now than the last two years.
We each have to evaluate what ‘risk’ personally means. I have stable ET with no other health conditions, so I’m not overly concerned for me, however, I have an immunocompromised husband and an elderly housebound Mother, whom I care for, so it’s not so simple.
I’ve also realised I can’t control certain things. I had a haircut two weeks ago, and was shocked when nobody was wearing a face mask, prior to this it was compulsory. I had to make a quick decision when I arrived as to what to do, I decided to go for it, wearing my FFP2 face mask of course. It made me feel a bit of an oddball though being the only one wearing a mask.
It must be such a stressful time for you and your husband. I understand your ‘Covid dread,’ it is certainly warranted. Likewise, flu should never be underestimated. I had a bad experience of flu many years ago. I lost a stone in weight in a short period of time. It was horrendous! I am left reeling when someone has a cold/cough and claims it’s the flu. As you say, anyone with true flu would be too ill to be socialising anyway.
I really hope that you manage to remain virus free, and wish you the best of luck going forward in your SCT. Please keep us updated. Xx
I feel a lot safer after four vaccinations, and because Omicron causes fewer hospitalisation and ITU admission.
I felt safe playing short mat bowls with a limit of twelve of us, all vaccinated, all having done an LFT, in a well ventilated hall, without masks for the first time. I think we could stop the LFTs.
I still wear a mask for shopping, as do most people in Sainsbury’s, and I go when it is quiet. I don’t go to many shops. We are ending the regular click and collect at Asda which has served us so well.
Well done on braving the hairdresser. I was going, but chickened out, grabbed the end of my now long, grey hair and snipped off three inches. It looks straight enough in a plait. I cut my husband’s hair with clippers, it is easy, and saves him trips to the barber, keeping me safer.
I am still taking Vitamin D and zinc, to help my immune system, both are cheap at Asda,
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