I guess I have the same MP as Beverlyanny. My letter about immunocompromised people is the only one I have never had any kind of answer to.
My GP says if an effective antibody medication is ever available I will be first in the queue!
JUMBO4
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Oh @jumbo4 I think we will all be in the queue for effective antibodies.
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Thanks, Alice_BloodCancerUK; sorry if my postings have not recognised the good work you and the others are doing bashing your collective heads against the brick (bone-head?) wall that the current Government presents. Individually, we really canāt do much, but as an organisation, our/your message has more weight. More power to your elbow, or whatever is the appropriate phrase!
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Hi everyone, Iāve only just recently found out about blood cancer UK and therefore also this forum.
@Mandi713 thank you for starting this discussion it is such a relief to hear that there others out who have exactly the same concerns as me.
I want to explain a bit about my situation. I donāt have blood cancer but my husband does - he was diagnosed with ET 14 years ago. He also has prostate cancer and is about to undergo radiotherapy. We are retired and live with our son who is in his early 30s. Like all of you we have been almost living in lockdown, since March 2020.
@Lally when you used the phrase āno end to this nightmareā you really echoed my thoughts. The only brief respite I feel weāve had was the couple of months before July 19th but it now feels like weāre back to square one!
@Firefly I totally agree that we have been sold out by the government. Like many of you I have also written to my MP and regional mayor. I am also feeling pessimistic about what will come of this, like you said @Irene it feels as if we have no voice.
@Willow I do agree there has been very poor government messaging. Itās frustrating that you have to constantly explain your situation to family and friends. My husband has close family members who are refusing to have the Covid vaccine. We are not allowing them to visit us. If they donāt care enough about my husband to take the vaccine, then they donāt deserve to see him!
It been good to actually express how Iām feeling to a group of people who are in the same boat and actually understand.
Many thanks to everyone
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I can completely empathise with all of your views. I donāt have any faith that weāre going to leave this whole thing behind or that it will be managed competently so iāve just decided that I have no choice but to get on with life and hope that my two jabs (plus possible booster) offer me enough protection at the same time as being careful and following sensible precautions but I can see from your messages that not everyone is in the same situation and itās a lot more difficult for some than others. I think what youāre doing is right for you and makes perfect sense.
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Hi @Kirsteen. Iām so glad you found us and even from your first post it sounds as though it has really helped to share how things are for you.
Previous posts have talked about how hard it is for these caring for the person with blood cancer and the forum will be so important for you. Have you got lots of support around you?
I look forward to hearing more about you. Have you
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Thanks @Nichola75 and @Franko.
My situation is complicated and Iām feeling like my household are quite isolated.
We moved to a new city three years ago and have spent half of this time almost in lockdowns or too worried to do anything. As I said in my previous message we donāt have much family support due to close family members being antivax. My close friends are not near although some have been very supportive through regular phone calls with them. We have made some new friends who have also been understanding but itās been harder developing deeper relationships with them due to the pandemic.
Until recently both of my husbandās conditions have been very well managed thanks to the NHS and weāve been lucky to live a full life. We are also fortunate to live with our son who is very supportive.
However I know that everyone on this forum is dealing with very difficult situations and as well as receiving support and understanding, I also want to be here to offer support and be part of a voice for all us.
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Hi @Kirsteen a great big welcome to our forum and it certainly seems that you share a lot of similar thoughts, feelings and practicalities as many of us.
It must be very difficult for you both as you had recently moved to your sonās in a big city.
If you feel you need to talk to someone the support line details are at the top of the pages.
We, as you realise, are very supportive so I really look forward to hearing more from you.
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Hi @Kirsteen. Moving is stressful during normal life let alone with health and Covid thrown into the mix. Itās great that you have your son for support. How is he doing? Iām hoping that you get to build those new relationships as time goes on. Like I said before, itās great to have you on the forum and I know youāre get the support you need and be able to offer a lot to others 
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Thanks everyone, I can see that I will receive a lot of support from all of you
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Hi @Kirsteen, you sure will!!!
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I have bought FP3 masks from Screwfix. Good value, readily available. Have worn on the train into London and once properly shaped around the nose was able to hold my hand over the filter and suck a bit of a vacuum - hence reassuring me that there was a good seal all round. Felt quite safe on the train behind the mask.
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Great to hear from you @Snellybob.
Going up to London must seem quite an adventure.
Those FP3 masks from Screwfix really seem good value and to fit the bill.
Feeling reassured is so important.
How have you been recently?
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Like a lot of people on here I wrote to my MP regarding my fears for the so called freedom day. I received a very nice letter telling me she had passed it on to the relevant parties. Two days ago I received the following letter. I have asterisked out personal names because of security.
********.MP
By email to: ***********.mp@parliament.uk
Dear ***,
From Jo Churchill MP Parliamentary Under Secretary of State for Primary Care and Health Promotion
39 Victoria Street London SW1H 0EU
020 7210 4850
23 August 2021
Thank you for your correspondence of 11 August to Sajid Javid on behalf of your constituent, Ms ******************, about COVID-19 and clinically extremely vulnerable people.
I was sorry to read of Ms ************ā ill health.
As Ms Williams knows, on 19 July England moved to step 4 of the Governmentās roadmap out of lockdown. The success of the vaccination programme in reducing COVID-19 hospitalisations means that we are in a better position to ease restrictions. As vaccination protects more of the population, the emphasis has shifted from Government rules to personal responsibility and we advise people to remain cautious, given the continued risks from the virus.
The Government has now published COVID-19 Response: Summer 2021, which sets out the essential actions that everybody should take to protect themselves and others. This document can be found at www.gov.uk by searching for its title.
We understand that those who are clinically extremely vulnerable may feel anxious about the easing of restrictions. Guidance for those who are vulnerable to the virus, and who wish to take a more cautious approach when restrictions are lifted, can be found at www.gov.uk by searching for āguidance on protecting people who are clinically extremely vulnerable from COVID-19ā. Those who are immunosuppressed can find information specific to them in the step 4 guidance.
On 19 July, we removed the legal requirement to wear face coverings. However, the risk from COVID-19 has not gone away, and face coverings remain an important way to help reduce the spread of the virus, which is why we expect and recommend that they continue to be used, particularly in indoor spaces where individuals come into contact with people whom they do not normally meet.
With over 89 per cent of the adult population now having had at least one dose of a COVID-19 vaccine, we are moving away from legal rules to an approach that enables personal risk-based judgements. However, published guidance will continue to recommend that wearing a face covering will help reduce the wearerās risk and the risk to others.
Businesses can consider encouraging the use of face coverings by customers and workers, particularly in enclosed and crowded spaces, through the use of signage. Passengers on public
transport are advised to check with operators about any policies they may have put in place, before travelling.
Although shielding advice and specific support for those who are clinically extremely vulnerable ended on 1 April, the NHS volunteer responders programme will continue to offer support to those who need it. It can be contacted by telephone on 0808 196 3646 between 8am and 8pm, seven days a week, or by visiting www.nhsvolunteerresponders.org.uk. More information about all the assistance available can be found in the above-mentioned shielding guidance. Individuals may also wish to find out what help they can get from their council by visiting www.gov.uk and searching for āget coronavirus help from your local councilā. Individuals can also access additional support from their energy and telecoms providers.
With regard to vaccine effectiveness, the OCTAVE study will examine the effectiveness of COVID-19 vaccines in clinically at-risk groups. This includes COVID-19 vaccine responses in patients with certain immunosuppressed conditions, including those with inflammatory disorders, high-risk cancer patient groups, and patients with severe kidney and liver disease. Cancer patient groups include those with blood cancer, including leukaemia and myeloma. The findings of the OCTAVE study are due this month.
The Health and Safety Executive (HSE) has outlined that it expects workplaces to be safe to ensure that all workers, including those in higher-risk groups, are able to access all the protections that are necessary. Employers continue to have a legal responsibility to protect all their employees and others from risks to their health and safety and should be able to explain the measures they have in place to keep employees safe at work. Anyone with concerns about health and safety at work can raise these with their workplace union, the HSE or the local authority.
The Coronavirus Job Retention Scheme has been extended to 30 September. Further information about this, and how to make a claim, is available at www.gov.uk by searching for āclaim for wages through the Coronavirus Job Retention Schemeā. Should you have any further queries about this, you may wish to contact HM Treasury direct, at public.enquiries@hmtreasury.gov.uk.
The Governmentās guidance for clinically extremely vulnerable groups is guided by the latest scientific data and kept under constant review. Should the current guidance change, we will write to everyone on the shielded patient list informing them of these changes. If someone wishes to follow the previous shielding advice recommended by their GP, then this is a personal decision that anyone is, of course, free to make and to follow as far as possible.
Public health remains the Governmentās priority and, as set out in COVID-19 Response: Summer 2021, measures may need to be taken to help manage the virus when the risk is higher, such as during the winter period.
I hope this reply is helpful.
JO CHURCHILL
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Wow @FionaB I have read every word, honestly, a bit of repetition in cutting and pasting, I have to say, but a response never the less !!!
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Iām impressed you got a response, how do you feel about it?
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I donāt think I expected anything else. My MP is not very happy about the response. In her words:
āāFrankly this response is an insult to those who are clinically vulnerable and who vaccines do not protect in the same way they protect the majority of the population. It suggests the Government have washed their hands of keeping people in your position safe. I appreciate you are likely to be disappointed by this reply would be very happy to put any further comments you wish to make to the Minister to him.ā
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Hi @FionaB now I am impressed with your MPās response to you.
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Me too! She is very on the ball and sounds just as frustrated as you!
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Hi all. I am new to this forum but Iām so glad I found it as I am so worried about COVID. I have just finished chemotherapy for high grade non hodgkins lymphoma and have a young son who is due to return to school next week. To say Iām freaking out about it is an understatement. No that restrictions have come to an end and there will be more mixing in school I am so worried that he is going to bring COVID home and give it to me.
I have been double jabbed but was told by my consultant during treatment that I need to act like I havenāt been vaccinated. Weāve had a very sheltered summer and have been acting like we are in lockdown while the rest of the country getsnon with their lives. With schools returnint soon I just cant shake this feeling that Iām going to catch COVID and either be extremely unwell or die.
My son ia due to start Year 1 in Infants school which is such an important year in his school life and development. Taking him out of school to homeschool him isnāt an option as both me and my wife work full time from home. I also need to think about my own recovery too. He would also miss so much if we took him out and my concern is this would impact on his wellbeing and mental health.
I just dont know what to do.
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