Hey Michelle
I’m treated for Myelodisplasia at K&C in you
The Cathedral Day Unit, I may be wrong but assume that’s where you are treated too.
If so contact the ward manager Leigh Carviil a lovely and extremely helpful woman.
Phone number 01227 783096.
I hope this is of some help to you
Good luck and best wishes
Anthony
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Michelle it’s Leigh Carvill.
When I’m tired as now I make errors in messages
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Thank you Erica. I will keep waiting to see if I get a letter. When I used the description end stage myelofibrosis I meant that it is terminal and so there is no doubt that my immune system is compromised. A doctor who knows about my disease said that I should definitely be in the vulnerable group. I am shielding myself for 12 weeks but I would like the advice and reassurance of having the letter.
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Hey Willow,
I shouldn’t worry unduly.
I wondered why I haven’t yet received one either but it’s only a standard letter. I checked online yesterday how would I know if I was registered as vulnerable, I know I am anyway with terminal blood cancer and I was directed to form to be registered as one.
From this I can only assume that the the powers that are issuing these letters are not aware of all of us that are.
Best to check with your medical team.
Best wishes
Anthony
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Thank very much Blackhat. I have found that form to register on the go,uk website so thanks so much for your advice. Take care of yourselves each and every one if you.
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Hi Erica, thank you for your reply, it’s much appreciated. I received a lovely email back from Su late yesterday, which has helped. I am just going to wait and see whether I get a letter next week and will contact my GP if not.
Ian
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Hi everyone, Im also totally confused, I have CLl but it 4 years since I had chemo and I am now back on 4monthly watch and wait check ups. I haven’t received the letter saying to isolate but.my colleagues are adamant that I am on the list and should not be in.the workplace ( Im an Nhs Nursing Assistant) so do I go off? Am I covered without a letter? Personally I want to stay in work but its so hard without clarification. Has anyone else had letters?
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Hi Maria. Welcome to the forum. The letters were generated by a computer. They’re intended to go out to EVERYONE who has any blood cancer no matter what stage. It’s good your employer wants you off. You should ask then if they are planing on furlonging you, paying you some other way, or if they have work from home you could do. Maybe you could even be redeployed to 111 or something.
If an employer needs information and someone doesn’t have the letter a copy of the govement statement found online together with Perhaps the Bloodwise statement and a copy of your diagnosis. You can also try registering on the government website for vulnerable people and note you’ve not received the letter and maybe contact your GP.
But I wouldn’t wait for the letter. Just follow the instructions. I know it’s hard (I’m doing it too). But it’s the best way to guarantee staying safe.
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Hello, I too havnt received a letter, I have CLL . GP says they havnt been given any information about it. I guess it’s all happened so quickly they are not quite on top of it. I’ll try the gov website, thanks. I’m shielding anyway. Stay safe everyone x
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Great that you are shielding anyway. Have you registered with the government website as apparently that’s one way to trigger a letter if you’ve not got one and to trigger help getting food.
But in the meantime have you managed to get into contact with local volunteers?
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Hi Maria, welcome to our community forum, you are certainly in the right place. It seems some of us have received letters and others haven’t. Perhaps you might need to follow your employers advice and the Bloodwise information as you need to stay safe and not become a patient yourself, it is a real compliment to you that you are so dedicated The wonderful Bloodwise support line is there for you and we are all here to support each other.Please keep posting how you are and what is happening for you.
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@Trueblue Hi Ian! I’m so pleased to hear you found the email helpful 
How have you been?
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hi @Willow I hope you are doing okay? this sounds like such a worrying time for you, which is so understandable. Today is the last day people in living in England will be receiving these letters, as Scotland and Wales started to send their letters later, it may take a few more days for people living in these areas. As you say @Willow, our guidelines around the 12 week self-isolation period would apply to people living with myelofibrosis. Like some of our other lovely forum members have said, if you haven’t received one by the end of today, we would encourage you to get in touch with you healthcare team to talk this through. Take care @Willow and do keep us posted.
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@Maria.G63 @Soperdiffy I hope you are both doing okay?
@Maria.G63 it’s so understandable for you to want to be at work, especially given the job you do. Our guidelines around the 12 week self-isolation period would apply to people living with CLL, this would also include people who are on watch and wait. We would also encourage you to speak to your healthcare team, I’m not sure if you’ve had the opportunity already? Just so that you can also have a bit more tailored advice specific to your situation.
As @Adrian says, we welcome you to share the information from Bloodwise with your workplaces, and they are also welcome to contact us too, if they wish to discuss any aspect of our guidelines.
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Thank you so much Sue. I have registered as a vulnerable person on the Gov,uk website and I have heard that this might generate a letter being sent. I am finding it impossible to get a delivery slot for groceries now. Sainsbury’s say that they have no record of me being a vulnerable person. It is all rather a muddle! I realise things are moving very fast but it is hard when some get letters and others do not.
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@Willow Willow, I’m so sorry, this must be so frustrating for you. It’s really good to hear that you have signed up with gov.uk. You may also find trying the following helpful too:
- You can also try and contact your local council and see if they can support you in any way
- This link here may also help, it is an organisation called Covid Mutual Aid, set up by volunteers who offer practical support to people, you can see if there’s a local group in your area
- it might also be good idea to check if there is a local volunteer centre in your area, and explore if they can help with practical support in anyway. There is a database here where you can check: https://www.ncvo.org.uk/ncvo-volunteering/find-a-volunteer-centre
Do let us know how you get on Willow, and then we can absolutely see if there is anything we can suggest.
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Anyone still struggling to get delivery’s etc don’t go out. Contact your local volunteer group: https://covidmutualaid.org/local-groups/
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I received the 12 week isolation text last week followed a few days later by the letter. I really thought I wasn’t in the high risk group as I am 4 years 3 months post transplant in good health and I only take penicillin. I contacted my clinical nurse specialist team and they said yes it’s right. I was still confused I kept reading the list to see if it had been updated. However, I heard a doctor talking on the radio a few days ago and she mentionEd people like me who had received the letter and were feeling confused…it was quite sobering …she said it’s called “remission” and not “cured” for a reason…if you were to have relapsed without knowing then you would most definitely be in the high risk group! So I’m doing as I’m told. Ironically my husband and daughter both work for the NHS and are both essential workers. We are trying to keep our distance within the home but it’s really difficult…Stay safe everyone x
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@Lisa it’s totally understandable that you felt confused when you received the letter. It’s good you consulted your CNS to talk it through.
It’s good to hear you’re following this advice and shielding yourself. It’s totally understandable that this is difficult to keep your distance from your family in your home. There’s some guidance on our website which might be helpful, around living with others whilst you’re shielding - https://bloodwise.org.uk/coronavirus/self-isolating
There’s also advice on this government web-page - 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
I do hope you’re doing OK Lisa. It’s totally understandable that this is proving difficult right now.
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Lisa, I found it was a weird feeling receiving the letter, perhaps I am not invincible. I know it is not easy but I think we are all isolating. It must be really difficult with your husband and daughter working in the NHS and trying to keep your distance when you are all living together. Please let us know what it is like and how you are.
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