I have news about ordering Covid test kits :-)

[TytoAlba]

Because I assumed the NHS online test ordering was closed, and after being unable to access any LFT kits for more than a fortnight, and also because I'm still waiting for the PCR I was supposed to be sent in January, I spent a happy half-hour trying to get through to 119 today. On the third attempt I got to speak to a real person who has proved to be incredibly helpful. He was able to order my PCR kit and said that if any of us are told they can't order on our behalf, we should ask for a priority test for vulnerable people which they can order through their admin service portal for PCR kits.

He also told me that under the NHS Living with Covid Guidelines, GP's are responsible for getting LFT's sent out but if we have no joy with the GP that the online test order line is still open for eligible people. Bearing in mind that I've been trying, without success, to order via the web for over a fortnight I wasn't expecting this but actually managed to place an order for LFT's about 30 minutes ago - Hurrah! Apparently, the reason that we haven't been able to get tests delivered wasn't due to a shortage of kits but because the number of delivery slots is limited so hopefully, it'll be better now that only eligible people can order.

[Deminem]

Hia,

Thanks for this, I actually tried ordering this morning as a punt, and it said no delivery slots available after filling out the questionnaire. Your post jogged my memory to try again and It worked fine, so let's see if they come.

[TytoAlba in reply to Deminem]

Mine were ordered yesterday for Monday delivery and a box arrived this morning so I'm waiting to see if another lot comes then. It'll be a bit ironic if my GP's surgery who told me it was nothing to do with them and they couldn't help earlier in the week have ordered a box for me too.

[MadBunny]

Thank you for posting 👍

[Wobbies]

Thank you. Immediately ordered some test and it said ordered. Thanks as had not been able to get them all week and last week.

[Neonkittie17]

Well done. I got a box of standard LFTs today in the post as well as the PCRs last month. I hope many more immunocompromised people are getting what they should now.

[Madmusiclover]

Thanks. I’ve taken a picture of that wording!

[Flor1rence]

thank you for sharing this x

[TytoAlba in reply to Flor1rence]

When I mentioned that lots of people with RA have been getting conflicting advice and couldn't access kits, the nice man I spoke to suggested I should make it public on this forum and told me the terms to use if you need to order a PCR kit so the person you're speaking to knows that you know what you're talking about 👍.

[JEM95]

I’ve just ordered some LFTs - hurrah! Thanks for sharing your advice x

[Gilliancheche]

Thanks. I have COVID at the moment so does my husband, we only have 2 tests left and had been unable to order more. Just tried again and Hey Presto - order received!

[aliplayspiano]

Thank you for sharing this information. I have just ordered a box of tests.

[Runrig01]

I received my LFTs in the post a week or so ago without ordering. It was followed a few days ago explaining the process and that we can re order online. It does stress you should only be using them if you have symptoms, and that only the government issued swabs will trigger the antivirals treatment. This I found surprising given they’re asking everyone to purchase their own, yet they don’t seem to have faith in the results from these tests.

[TytoAlba in reply to Runrig01]

Did you get a letter explaining the process and if so, was it a local or a national one? I'm really grateful that we're still able to get NHS kits but as often seems to happen, it's a bit derriere about face for the information about why they've been sent to come after the tests arrived. I imagine that they don't have faith in kits bought privately because it won't be long before there are counterfeit ones being sold, even from reputable outlets because they can get conned too.

[Runrig01 in reply to TytoAlba]

Yes it was an email from NHSE and nhs improvements, so it’s national guidance. It was the same with the priority PCR kit, I received it ahead of the letter explaining how it should be used.

[TytoAlba in reply to Runrig01]

Thanks so much for that info. Even though I was on the list, I didn't get a priority PCR kit so maybe I won't get the letter either but at least should be able to find it online if it's national guidance.

[Runrig01 in reply to TytoAlba]

You do mean your on the antivirals list, as it’s very separate to the shielding list. Approx 500,000 are on the antiviral list compared to the 3.7 million on the shielding list. Just checking as I know it’s caused a lot of confusion. 🤗It’s mainly patients who’s gp doesn’t have their biologic listed on their prescription and coded. It’s the coding that determines who’s on the list, and it seems those who only have biologics issued and recorded by the hospital were missed. My gp has my benepali on my prescription as an information only, which is how mine was picked up

[Deminem in reply to Runrig01]

Ah interesting.

I asked GP to add my Enbrel biologic to my prescription list just recently. My thinking was it may trigger something, but tbh it was just a scattergun approach by me in the hope that it actually meant something. He did this but just as info and it says on prescription "Hospital issue only"

Prior to February it wasn't listed at GP's or on prescription. So are you saying this may now trigger antivirals if I register a GOV-supplied PCR or LFT?

[Runrig01 in reply to Deminem]

I’m not sure it will trigger it now, as specialists were informed any patients added in the last 6 months would need referring separately to the CMDU unit. It should however make it easier for the CMDU unit to see you meet the criteria when they look up your nhs number. I think you may need to phone 119 to request a box of LFTs, we no longer need the PCR kit, a positive LFT is sufficient to get the antivirals. You could try the government site, as that’s how we’ve to reorder, so I assume there’s a tick box to confirm your immunosuppressed. If you get a positive LFT I suspect you may not trigger a call, but 111 or GP can refer to the CMDU unit if you haven’t heard within 24hrs of registering a positive result

[TytoAlba in reply to Runrig01]

There's no box on the government website to say you're immunosuppressed, just one to say you qualify for a kit which could also mean you qualify as an employee of the NHS, adult social care, being admitted to hospital, etc. but it's the same tick box for all qualifying patients for whatever reason. I phoned 119 and was told that we should still keep a PCR in hand as a lot of people with positive LFT's are still being asked to complete a PCR before the antivirals are prescribed and that having one cuts a couple of days off the wait if you can send back the PCR straight away.

[TytoAlba in reply to Runrig01]

Thanks for the info, that's really useful to know. My antivirals letter came from the hospital not the GP or DHSC and I've often wondered why Enbrel's not on my GP's medication list but that's obviously because it's prescribed by my consultant. Isn't it amazing that healthcare providers in the same Primary Care Trust can't communicate with one another to ensure patients are properly cared for. Looks like contacting the GP to get this put on my notes is something I need to do after the weekend. Thanks again.

[Runrig01 in reply to TytoAlba]

Yes my benepali is prescribed and issued by the hospital. However the fact that the gp has it logged is what has made the process easier. They should have it logged as info only, so if they prescribe you meds it flags if it interacts with your biologic. Or if they prescribe antibiotics it would flag them to tell you to withhold your biologic. It’s shocking how many gps don’t seem to have done this. 🤗

[Neonkittie17 in reply to Runrig01]

Yes it is shocking, I agree. My biologic and Mtx sub cut are logged at my GP and always have been. Even if not visible on the App the GP should have it on the list of meds on your computer. Each time you review with the rheumy they should send an update and detail your current RA meds prescribed by them. I have seen my biologic infusion and Mtx sub cut on my GP App medical records.

[TytoAlba in reply to Runrig01]

Yes, thanks for that, it's top of my 'to do' list on Monday and what you'e just said is exactly the reason to insist it goes on my notes 👍.

[Jackie1947]

Due to heavy demand last few days left it until today and my LFT are ordered.

[Monkeysmum]

Thanks so much for posting this xx

[Susiebee31]

I’ve just managed to order some as well!

[SuriL]

Thank you ! We haven’t had new LFT packs since last year -can never get the damn app to work when in the pharmacy and fog brain, so just tried and it worked-many 🙏🏾

[TytoAlba in reply to SuriL]

Mine were ordered yesterday afternoon for delivery on Monday and a box arrived today so I'm not sure if they're the ones I ordered or if the GP has had them sent.

[Briefencounter]

Hi TytoAlba , I tried a couple of times last week to order an LFT on the government website but had no luck . I don’t know why one has to go through the complete ordering system before you are told at the last gasp that you cannot get one .

However , I tried this morning and was successful . I’m seeing my rheumatologist next week at the hospital and wanted to be able to tell her that I had tested and was OK . It doesn’t seem to be a necessity or a priority at the moment , which surprises me considering the very high numbers .

[TytoAlba in reply to Briefencounter]

Aah! The nice man on 119 told me that they made you go through the entire process before you find out if you can complete the order to deter people who didn't really need them as presumably, they'd run out of steam before the end. It's a pain in the bum but good if it means that there are kits for people who really need them.

[TytoAlba in reply to Briefencounter]

You're really lucky to get a face-to-face appointment with your rheumy, I haven't had one for nearly 3 years because they were all cancelled. A 10 minute phone call doesn't hit the spot for me because they can't give you a proper examination over the phone.

[Lolabridge]

Thank you, this is really helpful and I've saved it in case I need to follow the advice.

[Briefencounter]

Yes , I am lucky . I’ve suddenly experienced extremely painful left groin pain which I think may be my left hip going “awol”.

When I had my TKR in 2009 my surgeon x-rayed my hip and told me that he thought my hip would need replacing before long . I have had to have a bed down in the dining room as I can’t make it up the stairs .

After visiting my doctor at the health centre the surgery has provided me with a shower chair , loo riser and small Zimmer frame . Using the latter has made my wrists , elbows and shoulders very painful so I’ve bought an upright rollator with armrests , which has been a godsend .

I’ve also bought a lightweight, electric , folding wheelchair as I guess I’m in for the long haul , considering the plight of elective hip/knee surgery in the NHS at the moment .

When I phoned the rheumatology helpline and explained all of the above I received an appointment with the rheumatology department within two days .

[TytoAlba in reply to Briefencounter]

You really are lucky, not because of your pain and mobility problems but because it sounds like you get really good support from your medical team. I hope you get your mobility issues sorted and even if it takes a while, it sounds like everyone's on the ball where you live. Isn't it surprising how some areas perform so much better than others?

We still can't get face to face doctor's appointments unless we present at the surgery about 4 miles away when they open at 8am, which isn't ideal when it can take several hours to get mobile in the mornings.

Our rheumatology helpline doesn't have real people any more, just a voicemail to leave a message and sometimes they call back after a few days but more often than not, they don't call at all. Can we swap homes?

😉

[Briefencounter in reply to TytoAlba]

I'm sorry that you're experiencing problems in getting help and support in your area . It does seem very unfair that medical services appear to differ vastly , depending on where you live .

I am in the SW and have access to the Royal National Hospital for Rheumatic Diseases which I think is considered to be a centre of excellence, at least in this area . So I have been fortunate in my care .

I think all areas are struggling to help their patients as covid continues it's relentless spread across the country . My Health Centre hasn't been unaffected and I've spent many hours on the 'phone , when the lines open , trying to get an appointment , only to find when it's finally answered that all slots have been taken for that day . So I have to start all over again the next day . However, when I do get through the care is excellent.

The other problem is that our area is expanding rapidly with many houses being built on the outskirts but services aren't expanding . We still have only one health centre and the doctors are overworked and many are off sick . So it's not all good .

Hoping you get the help you need and things improve for you . Keep safe .

[Joes_Nanny]

Thank you so much for this information, I have now been able to get a kit and delivery is great as I won’t have to risk going out, so pleased. 😊

[TytoAlba in reply to Joes_Nanny]

You're welcome but really, thanks should go man on the 119 helpline who asked me to post it when I told him that some immuno-suppressed people were having a problem getting any kits

👍

[Fuzzywig]

I'm also very grateful for this information! Thank you. My LFTs are also ordered!