No longer clinically extremely vulnerable?

It took a lot of work to get my GP to provide the shielding letter, in the end I had to get my hospital consultant to contact him, but eventually it arrived. Today though I have a letter from HM Government which says - We understand that your GP has reviewed your medical record and has advised that you are not considered to be at the highest risk of severe illness from Coronavirus. This letter is to confirm, in line with this, that you do not need to follow the government guidance for those who are clinically extremely vulnerable.

My question is why, what has changed, I still have ESsential Thrombocythemia blood cancer, am still 60, still have diabetes. Have other people had this or is it just my GP - who has never been very supportive even before Covid19

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Good morning @Janet and welcome
to the forum. It’s a good place to get support and advice and hear about others experiences.
I can imagine this must be really confusing and worrying as well. I would feel exactly the same. One minute you are told you are clinically vulnerable and then you’re not! I haven’t received anything like this from my GP.
Obviously I would suggest speaking to your GP and your hospital team, but you can’t do this until Monday which is really frustrating. In the meantime why don’t you give the Blood Cancer Uk Support line a ring 0808 2080 888 as they will be able to go through things with you and advise. They are open from 10- 1pm today.
Others on this forum will also be able to share their experiences.
Please keep us updated on how you get on. There have been so many mistakes/delays with shielding letters which has caused so much anxiety and I am keen to stay updated on others experiences. Please take care of yourself and we are here if you need anything. X

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Hi @Janet, a great big welcome to our forum. Well. this is the first I have heard about your MH Gov letter, but nothing surprises me and nothing arrived in the post today, we await others.
I have found this forum is really supportive and I hope you will too. We have various blood cancers, but I have found that many of us share the same thoughts, feelings and practicalities. How did you feel when you read your letter?

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Hi Janet,

How awful that you are having to fight for everything and that your GP is so rubbish. My husband has non-hodgkins lyphoma, a blood cancer but different to what you have. John got the first letter from the gov in March saying to shield, then at the end of April, another letter saying definitely shield came from his hospital consultant. We had no letters to say whether John should stop shielding or not so we made inquiries with the hospital but were still told different things by different people. In the end, Johns consultant emailed us and said John could stop shielding on 1st Aug. The doctor said the only patients he is advising to carry on shielding are those currently on chemo and those who have recently had a bone marrow transplant. So John has gone back to work now. But we have not had any gov letter like you have.

There seems to be a big inconsistency in all these letters and texts that people get. I would have thought the fact that you have diabetes would make it important to shield. I agree with the other comments on here - try to get some advice from your medical team. If I were you, I’d probably bypass my GP. Even if you have to wait a while for a response from your medical team, it’ll be worth it to get the correct advise. I know they are all very busy but if it is causing you worry then you really need some advise.

Good luck with it,
Love Mandy xx

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@Janet

Hi Janet, a big warm welcome to Blood Cancer UK online forum, it’s so lovely to have you join the family of forum members :slight_smile: :+1:

It does sound like you have a lot going on Janet? And I’m so sorry to hear you feel like you haven’t always got the support from your GP- this must be so frustrating for you.

Janet, we were given confirmation that people who had been shielding in England up until 1st August where shielding would be paused, would receive a letter coming from the Government to inform you of the pausing and the guidance around this. These letters have been inputted into by individual treating teams. This could be what you have received, however, there is some really good advice from our other forum members about talking directly to your treating team and your GP. This is something we would always strongly encourage before making any changes to the way you’re shielding, they will always be in the best position to give more specific and tailored advice around your individual circumstances. They will have the fuller picture of you as an individual, your medical history and your general state of health among many other important factors.

It’s so understandable to have concerns given your diagnosis of Essential Thrombocythemia and diabetes, and equally so important that you’re clear and informed as to why such guidance has been advised for you- hopefully talking to your GP and treating team will give you more clarity on this- it’s what they’re here for. So please never hesitate to reach out.

Do let us know how you get on Janet, the forum is always here to talk through any questions and concerns you have.

Hope everyone else is doing okay?

Su

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Hi Janet. I’m not surprised at your confusion. The message has been inconsistent all along. You’ve received sensible advice above to speak to your treatment team. You can always come to this forum to discuss less formally. It’s a strange situation and you should do what you feel comfortable doing.

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Hi Janet
I too have ET and my consultant passed the book to my GP who then told me to shield. I did recieve letters from the government to shield also. Like mentioned above… the rules have be very inconsistent and changing frequently it’s no wonder people dont know what to do or say. I am now back at work for the NHS after having 4mths off shielding and I am loving it! Its been so good to see my patients and work colleagues again. I am taking being cautious and I have a supported manager. Hope this helps you. Take care x

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Hi @Emmaco how are you getting on?

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I’m ok thanks alice. Back working on NHS ward since aug 3rd. Was so happy to see my colleagues and patients again, although abit nervous too. But I am being cautious…washing hands and wearing a mask and keeping my distance.

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Just a quick update after my government letter. I did receive the 1st letter to say shielding was paused which was fine, but the 2nd letter saying my status had been changed by my GP was confusing. I went on the e-consult system for my gp and (hopefully) politely asked what had changed that would cause the change in whether I was classed as extremely vulnerable or not. I received a call back from a doctor who explained that she was not one of the practise doctors but a locum helping out. She said that she could understand my confusion and that nothing had changed in my diagnosis or chemo which would change my classification. She said she could not see anything on my notes to say that the practise had told the government to change my status. She suggested maybe it was a government error but as a locum she could not be totally sure. She then said she would pass my enquiry on to the senior doctor and ask him to look into this, since then - about 10 days ago - I have not heard anything further. So issued is still not resolved. As I am in the north west under the stricter rules I just fear that if shielding is started again I will have to start registering all over again.

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What a confusing time for you @Janet and it shouldn’t be the case that you should have to keep chasing it up! From What the locum said, hopefully your status hasn’t changed. You could request your records if you wanted to check - if not, as much as it’s a pain, I would keep chasing for your peace of mind. How are you coping at the moment?

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@Janet it sounds like you found a sensible way forward. I never got any communication from the government or anyone else when shielding was paused so I’ve had to make my own decision based on what I think works for me. That was largely to get on with my life and do things and go back to work but I’ve got a fall back regarding work that I can revisit my risk assessment if I feel circumstances have changed and I feel I want to shield again.

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Thanks for your support. I am lucky in the firm I worked for went busy over 3 yrs and I took that as the chance to early retire, I was down to a few hrs as day 4 days a week. So now though Covid I have not had to worry about going out to work like so many have. I still have my 87 yr old mum to help but other than taking her to appointments, getting on line shop for us both I am still pretty much just staying home again. Merseyside is not an area to be confident about going out and about. Luckily I am quite a home lover but do miss choir and occasional trips out. However, I do firmly believe we will find a way of managing this virus going forward

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That must have been confusing for you @Janet! I’d encourage you to chase up the senior doctor if you still aren’t getting answers, you’re well within your rights to be informed about your individual health and circumstances.
Take care

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