No letter?: I was expecting to recieve... - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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No letter?

ilovedancing profile image
14 Replies

I was expecting to recieve a letter about being in the high risk category for coronavirus but so far nothing. Does anyone know if they have all been sent out now? As well as havi g scleroderma I also have essential thrombocythemia, a form of bone marrow cancer. I take chemotherapy tablets daily to keep it under control. I also have under active thyroid and raynauds. I rang my Macmillan nurse who is my point of contact at the hospital but she didn't know. I have been self isolation ad a precaution buy really would like to know for sure.

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ilovedancing profile image
ilovedancing
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14 Replies

I think you don’t need a letter to be sure!

ilovedancing profile image
ilovedancing in reply to

I do need a letter as it will have specific instructions and details about getting food delivered etc

garshe profile image
garshe

I am 75 have Severe COPD and have been told by my Respiratory team I am on the list but I have not received a letter or text either. X Sheila

Debbiedoughnut profile image
Debbiedoughnut

Hi, I have not received a letter but have received a text and a phone call from one of the hospitals that I attend. As far as I am aware the letters will be going out until the 29th. Try not to worry, you are being sensible and can do no more. Best wishes.

Ncoff profile image
Ncoff

I haven’t received anything either I have no spleen and scleroderma/raynauds. They are sent out by gps they have been sent the letters via nhs England if I haven’t had mine by Monday I will be calling them

Thom55 profile image
Thom55

My letter only came through yesterday so it will come

ilovedancing profile image
ilovedancing in reply to Thom55

I have just seen in the news that only 1 million sent so far so May e it will come soon

sarahsch profile image
sarahsch

If you don't have it Monday, call the GP. You might have been missed. I have a friend being treated for Leukemia who was missed off her GP's list. They will be able to check for you & add you.

You can also self register online.

Presumably this goes back to someone who checks.

gov.uk/coronavirus-extremel...

Stay safe,

Sarah

ilovedancing profile image
ilovedancing in reply to sarahsch

Thank you for the information. I didn't know you could register yourself. I will do that if I haven't heard anything by tomorrow. I have just been reading about people who have received a letter in error who do not need shielding so there does seem to be some confusion. It must be a massive undertaking to contact everyone. My husband has been doing the shopping. I have stopped going out now. He really shouldn't be going out as be is 75 and has had cancer in his voice box but at the moment we have no alternative. I know my daughter would help but she lives 7 miles away and had 5 boys to look after so I dont want go add to her workload.

marbelina profile image
marbelina in reply to ilovedancing

Hi there, I hope that you contact your gp today, sounds like you should be on the list. When you do get the letter or text make sure that you respond by phone or on line to register your requirements. I have registered my mum as supermarket delivery have access to the data base to prioritise the shielded for delivery slots. This will take a little while for them to organize. Check out what is available from local hubs, there is lots of support out there. I would think ideally both you and your husband should self isolate and have things brought to you. We are at the start of what is going to be a long haul and systems are still being put into place. Please take care.

ilovedancing profile image
ilovedancing in reply to marbelina

If haven't recieved the letter today I will be to ring my gp. I have already had a look at the website but it does say letters still going out until today.

ilovedancing profile image
ilovedancing

Well I rang my doctors surgery today as still no letter. The person I spoke to said what is shielding do you mean self isolation. I said no I mean shielding for very vulnerable people with conditions listed on the government web site and I have one of those. She asked what I had. Essential thrombocythemia. She had obviously never heard of it. I explained it was bone narrow cancer. I didn't even bother mentioning my scleroderma. She said she would speak to the practice manager and bet back to me. I am still waiting. Wouldn't want to rely on her in a crisis!

Linnet2 profile image
Linnet2

I spoke to my rheumatologist and was told I am not on the list. I have systemic sclerosis and I take one type of immunosuppressent . My lungs are only working at 40% of capacity . Not being on the list means no access to local help or prioritising for food deliveries. I am to frightened to go out though.

ilovedancing profile image
ilovedancing

My doctor did ring me. He rang from home as he is in isolation because one of his children has symptoms. He said I am definitely in the shielding category due to my home marrow cancer. I asked about the letter. Apparently the NHS has messed it up. Some people have been sent them who shouldn't have and others have been missed. They are go going through the records trying to sort it out.

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