More letters from hospital

[Chrissycl]

Well now the 4th jab as been sorted along comes another letter from my hospital. Apparently I can now send for a pcr test kit to keep at home in case I need one if lft test is positive so I can then phone either my GP,or 111 quicker for the new antiviral medication that needs to be taken as soon as possible after positive results. My first thought , does that mean all my 4 jabs aren't going to protect me then?. Second thought, oh well if jabs works all good if it they don't I have another option now, at least they are looking after me even if I haven't seen my rheumatologist for nearly 2 years now. Keep safe everyone

[Ruth12345]

I got same info about 0cr except it arrived a couple of days after being told to apply for it, which I hadn't got round to doing. I'm presuming it's incase we do catch covid we can be treated as quickly as possible. I do think however the jabs must help to some degree. I know it's different for different people. All the best.

🌻

[Runrig01]

In England they have sent out a PCR kit to all those on immunosuppressants. It is in a priority box, and if positive the covid team CMDU get in touch to organise treatment. 40% of those on immunosuppressants didn’t mount a good response, so it’s being offered to all on immunosuppressants.

[bpeal1 in reply to Runrig01]

I wish! Still not heard anything!

[Neonkittie17 in reply to bpeal1]

Same here 🤷‍♀️

[Runrig01 in reply to bpeal1]

From today you can phone 119, option 1 and ask for a kit, explaining you meet the criteria

nhs.uk/conditions/coronavir...

[bpeal1 in reply to Runrig01]

Yes I heard that and will definitely try it although I’m not overly hopeful! I’ve also emailed my rheumatology secretary to see if they know how the system should work.

[bpeal1 in reply to bpeal1]

Just called 119. They can’t help!! She suggested I contact my GP. Yet again I’m going round the houses!

I’d be interested to know if 119 is able to help anyone else and if so which options they chose.

[Runrig01 in reply to bpeal1]

I would come bract your MP and ask them to resolve it for you. You need to quote full postal address in Mp emails, to prove you are a constituent 🤗

[bpeal1 in reply to Runrig01]

I’ve sent a message to my GP and rheumatology secretary so I’ll give them a couple of days to respond first.

[GinnyE in reply to bpeal1]

Same here , posted earlier today..

[Neonkittie17 in reply to GinnyE]

I wrote to my GP and emailed my Rheumatologist on 23 December. I’ll give it this week then I’m back at them again. This time I’m going to speak to the GP practice manager as she was the one who kindly organised the CEV list/letter end of 2020 for me when the letter I sent to the doctor got ignored. Likely scanned to file by an admin person and never read. 😑

[GinnyE in reply to Neonkittie17]

I can't understand why you have not been sent the PCR kit. Your lack of antibody response and medication should put you at the top of the list! It's making me see red😡

[Neonkittie17 in reply to GinnyE]

Thank you. 💗 Me neither, Ginny. I’m not very impressed at all. I was also messed about really badly re the CEV list. Ten months from April to December 2020 it took me to get on it. I’m going to phone the GP practice manager end of the week. It was she who helped re the CEV. If she can’t this time and I’m sure people have already asked re this, then I’ve no alternative to ask for a doctor to phone me to discuss this as it is something that can’t be left. I’ve tried to do things without being intrusive.

I’m also going to email the shadow minister for the disabled, Vicky Foxcroft, and let her know of my own experience and of others on here who’ve been overlooked and are definitely in the eligible cohort. She said on her website wants to hear from disabled people and I think she would tell B&Co that things ain’t running smoothly re the anti-virals eligible cohort. She may already have done so. I saw her speaking to Javid re the anti virals and their availabity/priority for the immunosuppressed back in November so she’s vocal in the House. Hope you’re alright, Ginny. 💗

[GinnyE in reply to Neonkittie17]

I have gone on line to government website to request a test, and there is an option to click that you have been advised medically to get a test and I clicked it and now test on way. Probably not linked in to the Covid medicines unit but at least will have test in house if needed and will contact GP or even 111 if ever tested positive.Llolabrig on here has posted on here about this on another thread if you can find it. Hope this is helpful. Someone else has posted the criteria the BRS have issued and it’s more specific, maybe I don’t fall into the listed categories although my rheumatologist is sending me a letter contrary. Im sure you will fall into the BRS categories.

[Neonkittie17 in reply to GinnyE]

Hi Ginny, thank you, I do fall into BRS/Gov/NHS categories as I checked all those and told my rheumy and GP when I emailed/write to them. It’s even more frustrating when you see that on the official sites. 💗x

[rounder in reply to bpeal1]

I spent half an hour on the phone to 119 to be told they can't do anything. They are sending me an ordinary one to keep in case I need it, but suggest working to GP or rheumatology.

[Neonkittie17 in reply to bpeal1]

I am going to phone 119 this week. Frustrating that so many people are being given differing and confusing advice. 😑

[Pythagorus in reply to bpeal1]

I phoned 119 and spoke to operative in test and trace. PCR kit arrived next day.From previous experience of talking to operatives in test and trace I found their knowledge variable. Give them another try. 😊

[bpeal1 in reply to Pythagorus]

Did they just send a PCR kit or were they able to add you to the CMDU list? It’s being added to that list that I’m most concerned about. 119 could send me a kit but that wouldn’t trigger treatment if I tested positive.

Think I’m sorted now anyway as my GP called me yesterday.

[Chrissycl in reply to bpeal1]

No wasnt added to any list but my letter from the hospital provided numbers to phone for the medication namely phone 111 or GP

[Pythagorus in reply to bpeal1]

sorry by I haven’t replied but my answer to your question was provided in a letter from NHS . If PCR test positive call GP practice or 111 to refer you for potential treatment. I think its wise to have a PCR kit ready at home for /if needed. Saves a bit of time rather than waiting until lateral flow test show positive and then sending for the kit. Hope we dont need it 🤔

[Chrissycl in reply to Pythagorus]

So do I .

[Deminem in reply to bpeal1]

I'd be extremely interested to know if 119 actually helped anyone with anything.

Every time I call I get someone who is obv working from home, caught off guard as they're eating cornflakes and watching TV when the phone rings. Not blaming them, they haven't been medically trained nor are they up on the guidance, mo! You'd have better luck asking the bloody milkman at this point😃

I will call though, just to see if get someone who has a clue, in the spirit of the lucky dip!😜

Ok update, just called 119, option 1. Nice lady not eating cornflakes. She spoke to her supervisor and said they aren't the ones who can send out Priority boxes but is sending a normal PCR as a stop-gap. My actual GP is due to call any minute about my raised ALT, but I'm at pains to ask him about it as he's busy, plus I reckon I'll have to educate him on the whole subject which by now is getting very old

[Poshcards in reply to bpeal1]

me too, but GP wont help says its a government thing and to ring 119!!!

[GinnyE in reply to Runrig01]

Just tried it... posted about my experience earlier today

[rounder in reply to bpeal1]

I haven't heard either, it's so patchy and inconsistent😥

[Frances_UK in reply to Runrig01]

Nope, received nothing. On biologic + methotrexate.

[Runrig01 in reply to Frances_UK]

I can only suggest as the nhs statement says, ring 119 option 1. Failing that contact your mp to resolve it for you.

[bpeal1 in reply to Runrig01]

There's no point contacting 119 they can't help. They just say to contact your GP.

[Runrig01 in reply to bpeal1]

I know of others on a shielding forum who’ve managed to successfully get 119 to send a priority kit. Seems hit & miss who you get to deal with your enquiry. A few have had to accept the regular PCR kit as they had run out of the priority. They were told they would still be flagged if positive and contacted by the CMDU team

[Frances_UK in reply to bpeal1]

And GPs can't do anything about it either. Think I'll just wait until I get Covid and argue my case then.

[bpeal1 in reply to Frances_UK]

I’ve just had a call from my GP. She was in the middle of sorting it out for me and wanted to check a couple of things.

[Chrissycl in reply to Runrig01]

119 cant help , got my pcr through the gov website

[Chrissycl in reply to Runrig01]

I'm in England and all I got was a letter telling me to apply for one on the goverments site online . I did and have got the test now to use if I need it.

[GinnyE in reply to Runrig01]

Not me!!

[Poshcards in reply to Runrig01]

I havent had one!

[Madmusiclover]

Here you go! gov.uk/government/publicati...

You are lucky. No sign of mine…

[bpeal1 in reply to Madmusiclover]

Me neither!

[janmary]

Me neither

[GinnyE]

I have just posted about this issue. I'm trying to get myself onto the list to get the kit, not easy. As you say, having another option for protection can't be bad.

[Chrissycl]

Websitec to use from letter I was sent

Letter

[Poshcards]

still waiting for my letter and pcr tests!