can't get a letter for a priority PCR with CLL.

[CrazyDaisy68]

Tearing my hair out and getting nowhere trying to get myself a priority PCR! I am starting to feel forgotten and about by both my CNS and surgery. I have CLL on W&W. The surgery said I just need to ring 119. They will not help unless I have a letter. The CNS said noone has asked her for a letter before. I received a normal PCR in the post but not a priority one. I supposed I should be grateful for that! I am at home today -trying to organise my 4th Vaccine while my disabled son is off college with seemingly a cold but has tested negative for covid (despite there being several cases at his college). I am so on edge. If I had THE LETTER I could get a 4th jab tomorrow. This all such hard work! :(((

[headjog]

I too thought I'd been forgotten. But...my PCR kit turned up yesterday.......still no letter though!!

[CrazyDaisy68 in reply to headjog]

That's good. Was it a priority one? I made four calls to 119 and got 4 different answers - only one was helpful. So she went ahead and orders 2 tests for me as my son has Learning difficulties and is vulnerable too. She did say however, that they are not 'priority' PCRs - she ' knew her friend had had one in December as her son has Down's Syndrome but there was apparently no memo about 119 staff giving out a priority kit' Total fiasco!

[sun_flower]

You don't need a letter because the vaccine centre will have your NHS records ,my surjury just rang to tell me that and l have booked an appointment for tomorrow, good luck

[CrazyDaisy68 in reply to sun_flower]

Ok. When I booked it said clearly you need to bring evidence such a letter to say you are at high-risk................ I could have booked it for tomorrow but didn't want to risk being turned away without THE LETTER!

[sun_flower in reply to CrazyDaisy68]

Good luck 👍

[ygtgo]

I feel for you daisy ... I'm not getting anywhere searching the NHS online.

Have you tried your local health authority yet ? ...

Here in Scotland we have a Scottish Gov. page that says -

Direct access to coronavirus treatments for patient groups considered at high risk from coronavirus and with a clinical condition prioritised for treatment ...

... if you are are a member of one of the patient groups considered at high risk from coronavirus with a clinical condition prioritised for treatment

... Health boards can accept a positive lateral flow device (LFD) test result whilst waiting for confirmation of a positive PCR test in certain circumstances.

Accessing Treatment

The table below provides a phone number for each NHS health board that you can contact if you meet the eligibility criteria.

You should contact your health board where you live ....

Could you check your local health board to see if they have a similar scheme.

I have been sent a PCR test kit ... if I test positive with LFD/PCR, as I see things, I should send off the pcr test and phone my local authority right away not waiting for the pcr result as I am recognised as being in a high priority group.

Hopefully this will not be needed, but the odds have just dropped dramatically ... Mrs ygtgo tested positive yesterday ... the school in which she works is rife with covid at the moment.

best wishes

ygtgo

[sun_flower in reply to ygtgo]

Oh so sorry to hear that,good luck 😢 x

[Belfastbees in reply to ygtgo]

Any chance you could link to the page you reference here or take a shot of the table showing the numbers to call?

[ygtgo in reply to Belfastbees]

The table of telephone numbers have been issued by NHS Scotland and only covers the Scottish Health Boards.

[Belfastbees in reply to ygtgo]

Ah, OK the each health board referenced was in Scotland. Best of luck. Info online in NI is abysmal.

[CrazyDaisy68 in reply to ygtgo]

Fingers crossed you don't get it/not affected too badly. It feels like a very bad game show where no-one knows the rules to me. Let us know if you (hopefully not) catch it and whether indeed you get a 'priority service'.

[Annie1920 in reply to CrazyDaisy68]

There was a new interim government edict 27rh Jan.. Someone posted it yesterday for England.. LF +ve result can be used for referral to CMDU by gp, clinical team or 111.. After 10th Feb.. But does have to be registered with 119..which is hopeful for those who still haven't received their priority PCR kits

[CrazyDaisy68 in reply to Annie1920]

Thanks. I saw the CLLSA letter this morning and understand a bit more now.

[Belfastbees]

I feel the same. I have finally got a letter sent by my CNS to produce for my 4th this coming sunday. This was after I contacted them asking should I not be getting a 3rd primary dose. I had contacted them at the time and noone got back to me. I assumed I wasnt eligible. I never got a priority test kit so spoke with 119 who knew about them and ordered one. I believe she put the request on but the system in the background sent a normal one. I discussed that with the 119 lady who said just keep it and use it and if you don't get contacted automatically (by the system trigger) ring them back. I assume I'm not eligible.

I further assume I'm not on this elusive list. Thats my biggest concern, but I am not majorly worried. I do hope it will kick in, and certainly if I test + for covid, likely sometime i'm sure, I will contact 119, my GP and my haematologist and advise them, along with my belief I haven't been recorded properly. Of course this will be a couple of days after I test + so I will have demonstratable evidence that I am right to say that.

I am sure there are many more in a similar position, and some perhaps more clinically vulnerable. Frankly I fancy my chances with covid, but it would be nice to have a backup plan.

I know perhaps I should agitate more but it feels always to be fruitless and frankly I just get on with it. Its easier for me than others, I appreciate that. I just hope it all goes OK, for all of us.

Maybe we should have a post covid party to celebrate, but need to check the rules on that one. I'm probably not eligible.

🥴

Stay well everyone.

[RosettaClapp in reply to Belfastbees]

stay well and I do hope you get the priority PCR soon ..but the fact that LF(as long sits registered with 119 ) will be enough to get referred after 10th Feb is heartening ..

[devonrr]

I don’t worry about the 4th jab. Had 3, not worth the stress trying to convince people. If it happens, good, will do.

Had my priority PCR test delivered yesterday so I’m on a list somewhere! Pleased about the test arriving as it adds to the confidence of getting out and about and if I catch COVID19.

[CrazyDaisy68 in reply to devonrr]

I was fine knowing something might turn up in the post even though I didn't get a letter - but found out I should have. Only since my son has been off with a cold ( he has severe learning disabilities so pretty difficult to LFT him without pinning him down on the floor) and there are several covid cases in his class. I'd find it hard being home with him/ looking after him if he gets sick and dealing with my own CLL stuff becomes a low priority. Basically I just want to be able to trust the system that should be in place. Most of my vaccines I have had to pro-actively chase but probably wouldn't have if I wasn't a carer.

[Stickybud]

Re Priority PCR kits, please see a very recent post by Bartlet: Blood cancer uk explain why some CLLers are finally getting priority PCR tests

This provides a phone no for people who have not yet been provided with a kit. Good luck.

[CrazyDaisy68 in reply to Stickybud]

That is very interesting and explains a lot! Thanks for pointing me to it. Take care.

[Belfastbees in reply to Stickybud]

Oh, useful. I'll send them an email. Interestingly when booking my 4th the system did not recognise my H+C number. I put that down to being in NI and there being some disconnect. I further ponder perhaps that is why I'm seemingly not listed, computer says no!

[devonrr]

Yes I noticed that but not chasing anymore. 2 years of stress trying to get what I’m entitled to. Life is far better getting on with it. 3 jabs and a PCR priority kit, I’m happy with that.

[Belfastbees in reply to devonrr]

I have to say Intend to agree regarding further vaccinations. People everywhere are catching omicron, vaccinated and boosted doesn't matter. Covid has changed so much and efficacy of the vaccines against newer strains reduces. I'll get excited if they bring out a new vaccine, targeted against a newer variant. Really only taking the 4th as a talisman, I guess.

[devonrr]

As I say if it happens it happens. Not worth the stress. Does seem NHS digital was the problem for me over 2 years. A sudden abundance of letters. Thank you charities.

It does say 3 months to your 4th jab in a letter, so for me will be 20 February if I get the letter as such.

What I’m noticing in the supermarket today is that less customers are wearing masks. Staff do! I’ll be wearing mine til after March when the normal flu season ends. COVID19 thrives in the cold months!

[Fran57]

Hello. I feel your pain and frustration.I have also been ‘phoning everyone constantly for weeks and weeks for my husband and getting the same responses as you.

It took an awful lot of calls and explaining ( over and over again to people who were so lovely but couldn’t help) to eventually get his 4th vaccination.

Don’t give up 🙂 . I had only just got off the ‘phone again yesterday and a priority PCR test arrived for my husband… we were so surprised!

Thankfully, the letters from blood cancer U.K. posted here today, explain and seem to say that it will soon be sorted for everyone, so I sincerely hope you get yours soon.

My husband doesn’t have “the letter” / email yet.

I am so thankful for the support and information on this forum… I genuinely could not have coped with shielding these last two years without all the kindness here.

I do hope your son feels better soon too ( I worked for thirty years with children with learning difficulties and understand how something like explaining/doing a lateral flow test would not be a simple task.)

Stay strong and positive. Sending you a hug 🤗,

Fran 😷

[CrazyDaisy68 in reply to Fran57]

Fran, thanks. That is so kind. Sounds like a cliché but I put my son's needs first and often end up in a panic that I haven't chased up stuff I need for me. Got the priority email today!! Wheyhay! Hopefully the priority PCR is on it's way then. All the best.

[jendur]

Just found 'the letter' in my junk box!! Hurray!

[CrazyDaisy68 in reply to jendur]

Ahh, well done. Better late than never!