NHS Letter regarding covid testing and treatments for CEV Patients

[Jm954]

I've been asked about this a few times so here is the first part of the letter, second part is in the photo of my additional comment.

Hope this helps those of you who haven't received your letter as the necessary contact details are included.

Jackie

[Jm954 Administrator]

And the second half of the letter. You’ll have to enlarge this photo to see it all.

Letter

[Psmithuk in reply to Jm954]

Thank you, Jackie. Here is the one one I received from Wales NHS:

Wales NHS letter text

[Psmithuk in reply to Psmithuk]

Second page. No mention of PCR tests being sent to our homes.Chrisx

Wales NHS letter

[Jm954 Administrator in reply to Psmithuk]

I like the fact that I have a pcr kit ready to go as it saves me going to a testing station and the exposure that that might bring.I do think NHS England have got this right this time.

[Psmithuk in reply to Jm954]

Yes, it’s good. Wales NHS seem horribly casual about it!

[223dogs in reply to Jm954]

I tested positive on lateral flow yesterday and used my PCR kit which I received before Christmas. I had to call 119 to sort out recording it and they were very helpful, apparently the code on the test boxes indicate that it's a test from someone vulnerable and they are prioritised. I'm hoping for response within the 48 hours, if not I have instructions on what to do next. My son is still waiting for his PCR test which we ordered on the 31st so so far so good.

[RosettaClapp in reply to 223dogs]

Thats me stymied then ...as I don't have the grey packaged test kit ...my specialist nurse doesnt know anything about it and is worried that I may not be on the list as CEV for some reason I am just so worried about this

[223dogs in reply to RosettaClapp]

Can your GP help or your consultant? It's such a lottery

[BluMts in reply to Jm954]

Well, I'm not so sure they have got it right. I've got no letter. 119 tell me they know nothing about the letter and can only send me a PCR test if I've been exposed to someone with who has Covid. My Surgery says they know nothing about this system for monoclonal antibodies for extremely vulnerable people, I asked to have a Doctor call me back before Christmas, still waiting.

My husband who is on the very vulnerable list, had his third covid jab listed as a booster and the online system rejects him for the 4th jab. 119 says no 3rd jabs are ever listed as boosters on the NHS systems and in any case they would not know how to change this record on the systems. I ask for the Department named here somewhere, that can amend records, giving its correct name and on my insistence they direct me to a website that is no use. 119 also direct me to a website where I can see my husbands NHS records, but I cannot as his surgery does not support patients records being available to view. I'm tired.

[RosettaClapp in reply to BluMts]

Im in the same boat as your husband ..no kit no letter ..I asked my gp my specialist team my local nhs trust and nothing..Ive just got off the phone to 111 and they haveny got a clue either ..just asked me if Im taking vitamin D... ffs ..(I am and have been for years !) I do know the promise is that we will all have heard by Jan 10 2022 but that's getting very close now not to have heard and I have friends who have heard weeks ago within the same set up locally and have received their home testing kits (which have a different coding, evidently, to fast track them through the system so ordering an ordinary one isnt going to cut the mustard for us ) grrrr..I did write to the nhs trust who say they intend to put in two CMDU centres ...intend ....hardly ispiring confidence for me ... I am so frustrated and worried over this..and I could really do without it.Im in Somerset England by the way

[Susanbarratt in reply to RosettaClapp]

My husband had been on WW for two years and now needs only be to seen yearly as he is doing well. I rang the hospital today and enquired if he would receive a letter and PCR kit in case he caught covid. The answer is probably not. I asked what would happen if he caught covid the answer is... get a PCR test, ring the hospital before 8pm if he has trouble breathing or had a temperature, after a blood test he may get treatment. I did point out that being on WW still poses a risk in some cases. Not impressed.

[RosettaClapp in reply to Susanbarratt]

They are just wrong the nhsEngland letter sent to all gps and hospitals states very clearly that CLL patients ARE eligible (W&W and in treatment)..dont give up but get on to the practice manager at your gp surgery its there that has the solution when the gp correctly codes your medical records he will be eligible ...without that coding he wont sadly

[Susanbarratt in reply to RosettaClapp]

Unfortunately my GPs surgery is non covid and I mean that in all ways! I know what the letter says and my husband is classed as CEV but it seems the hospital aren't interested, it's an uphill struggle. If he's unwell and he develops a high temperature or breathing difficulties after 8pm I have to ring 119. I'm made to feel they will take more notice when and if his CLL progresses.

[Annie1920 in reply to Susanbarratt]

Like mine grrr.. I have just heard back from my MP (which was a big surprise to be honest) and he is going to chase it up with the health authority so it might be an idea to send a request to yours.. The more of us that try this route the more likely it is that the government will know the system isn't working for everyone eligible which cannot be bad in my opinion

[ScruffyDuck in reply to Psmithuk]

That is what I am seeing, I have emailed my local Health Board to ask them how to get a standby PCR kit in Wales.

[Psmithuk in reply to ScruffyDuck]

Good idea. Will try the same, thanks.Cx

[Belfastbees in reply to Psmithuk]

It's great as you say you have this ready to go. I am in NI and have had no communication of any kind. I note, as the 2 members from Wales commented also, I am (and the Welsh) on w+w. I recall when these treatments were discussed it was unclear if w+w would be included, though some on w+w have been, perhaps by discretion of their GP or specialist.

[RosettaClapp in reply to Belfastbees]

I have had Obinutumazab in the last 12 months and am now on Venetoclax so I am CEV but no letter ...I am just so worried about this as no one on the ground in contact with me knows how to check if I am on the list or how to refer me if Im not (evidently they are as much in the dark as I am)

[Belfastbees in reply to RosettaClapp]

Rosetta, there must be no doubt you should be on the list given your history. Its not inspiring that noone seems to be able to check if youre on the list.

Have a look in this page:

bloodcancer.org.uk/support-...

You will see how the process for different parts of the UK should work, if on the list you should get a call from NHS. Depends on your region.

As you say though how do you know youre on the list, will you have to ring and beg for treatment?

Did you get (I didn't) a PCT home test kit to hold in reserve?

I would say receiving such a test out, especially unsolicited, is a good sign you've been included, but not sure if the converse is true.

[RosettaClapp in reply to Belfastbees]

no letter or testing kit sadly..im waiting on line now having been given a phone number for nhsEngland (0300311 2233) as nhs digital said they should be able to help ..we shall see

Just got off the phone to nhs England they tell me..definitively... it is down to the coding the gp puts on our medical records and advised me to get on to the practice manager post haste and if they dont know for them to get onto their area manager for advice

soo here goes ...wish me luck

Practice manager not in today ...so I sent an email so watch this space

[Belfastbees in reply to RosettaClapp]

Best of luck, at least youre making progress.

[Annie1920 in reply to Belfastbees]

I really do hope so.. Thank you for your encouragement

[Biker950 in reply to Belfastbees]

Hi, I am also in NI and haven't had any notification. I'm W&W also)

[Belfastbees in reply to Biker950]

I had a read on the blood cancer UK website and the NI info isn't being updated, the blood cancer view is that patients in England, Scotland and Wales will probably get written to. Just a link to out indirect which is not helpful much at all.

[Belfastbees in reply to Biker950]

I am a biker too, MT09. Maybe we should start a CEV biker group, where we would all go out, on different days of course, to look at coffee shops through the window. 🤭

[Biker950 in reply to Belfastbees]

Sounds Like a Plan, I've 950 Yamaha Midnight Star, and 750 Honda Shadow, Both Cruisers, or Armchairs lol

[RosettaClapp in reply to Psmithuk]

I still haven't had the letter so I don't know if I have been registered or not as CEV..all very worrying but I did ring 119 and order a home PCR test to keep by me just in case ..It took some time to get through to the right dept but it camevery quickly and I now have one in spite of no letter

[Psmithuk in reply to RosettaClapp]

Well done for persevering! Which country of the UK are you in, please?Cx

[RosettaClapp in reply to Psmithuk]

sorry I didnt add it Im in Somerset England ...Bristol health board have a very comprehensive pathway document to find how for medics Somerset has nothing this is a link to the Bristol site

remedy.bnssgccg.nhs.uk/covi...

[Psmithuk in reply to RosettaClapp]

I’m sorry, I can’t help you - I’m in Wales, also with problems! It is frustrating, isn’t it?

[IWVC in reply to RosettaClapp]

I'm on W&W and haven't heard anything. I also gave up trying to get my 3rd jab listed as 3rd Primary as my GP surgery claimed they hadn't heard of it. Like most, I did get a letter at the time England "opened up" before Omicron surfaced, which basically said that the CEV list was being scrapped and you were on your own - just carry on isolating yourself from everyone else. I take it that the original list, which seemed to work well, has been abandoned and some new "variant" of list issued. I suspect that despite Blood Cancer UK's interpretation that W&W IS vulnerable, the vagueness of the original NHS announcement has resulted in us being left off the current CEV list.

[Annie1920 in reply to IWVC]

That's exactly what I fear..remedy.bnssgccg.nhs.uk/covi.... This site explains who is eligible and it is definitely is us W&W or having treatment.. The inclusion in the data base is absolutely down to the coding your gp puts on your medical records (this was from the NHS England contact person today so it's definitely correct) she told me to ring the practice manager and get the coding updated and if they feigned no knowledge to tell them to reference their area management team. About a 3rd jab ring 119 and get through to the wrong records dept.. They will take your particulars and schedule your record to say the 2rd jab was a third and not a booster but it takes 28 days then get a note from your gp today you are eligible for a 4th jab (your booster) after 2 months.. I did this and had my 3th just before Christmas before my records were updated at a walk in centre.. Good luck and don't let the b#£&@rds grind you down and do let us know how you get on

[BellaBee10]

Thank you for sharing this. I haven't received anything yet so it's reassuring to know I can access the information here.

[Jm954 Administrator in reply to BellaBee10]

Please contact them and get yourself on the list. It will save you a lot of trouble and delay if you get covid.

[RosettaClapp in reply to Jm954]

who can we contact I think I have exhausted the list ..gp, health authority, MP, 111 119 and my treatment team at the hospital ..with no result at all they either know nothing, or dont know how to access the system to check up grrrr

[Belfastbees in reply to BellaBee10]

You definitely should be on their radar, push for it. More than having the test ready to go it's important to be recorded on the database. Who knows what else this will bring that may be of benefit.

[Irishcll]

Hi Jackie

Thanks for sharing.

Here in Ireland there is no letter or even a plan to protect our patients.

No available covid treatments.

Would it be OK to share your letter on twitter to highlight how neglected the community is over here.

Happy new year.

Michael

[Jm954 Administrator in reply to Irishcll]

yes, of course Michael. I look forward to seeing it on Twitter

[Irishcll in reply to Jm954]

Thanks Jackie.

Your a star.

Happy new year.

Michael

[Teresa252 in reply to Irishcll]

Hi Michael, I was just about to comment same, no contact in Ireland at all at any stage Re covid. I've had my 2 vaccines, booster. I've had a sinus infection and sore throat over holidays, started antibiotics New Years eve. I've been trying to get Pcr test but they are impossible to get. Antigen tests are negative but got one faint positive yesterday. Did another 2 yesterday, both negative and another one this morning is negative. I rang Gp this morning and they will refer me for pcr, Said I should get appt for test in 4/5 days.I emailed my consultants secretary to ask if I should start antivirals and what the protocol for using monoclonal antibodies is for CLL patients in Ireland if Pcr test is positive. I feel good, congestion is clearing, no temperature, throat just sore when I wake up first. But it's highlighted to me how inept the system is here, if I were seriously ill.

[Irishcll in reply to Teresa252]

Hi Teresa,

Thanks for your message.

Its shameful our patients have no plan to access tests or treatments.

I'm sorry to hear of the runaround you are going through.

At the least you should have quick access to a PCR test.

The 3 doses you received are primary and you should now get a 4th dose booster. This should be available after a 3 month gap.

Our patient community have not received the booster yet.

We are waiting for clarification from the HSE on how to access this booster as there were difficulties with accessing the previous doses.

I hope you are on the mend.

Regards

Michael

[Teresa252 in reply to Irishcll]

Thanks Michael. I will be contacting my TD's to ask them to highlight this inadequacy. I will wait on consultants response first (if I get any!) Wishing everyone the best to stay safe and well, not only during this latest Covid surge but always x

[teakbank12]

I've still not received any email or letter referring to the above.

Dave

[Jm954 Administrator in reply to teakbank12]

Please contact them and get yourself on the list. It will save you a lot of trouble and delay if you get covid

[RosettaClapp in reply to Jm954]

how to get on the list or at least check if Im on the list is my problem ..any suggestions gratefully tried

[Fran57 in reply to teakbank12]

My husband hasn’t received either yet … you’re not alone.Fran 😷

[BellaBee10]

Should we call 111?

[Jm954 Administrator in reply to BellaBee10]

you could try that but perhaps an email to the address at the end of the letter if they say it's not their responsibility.

[wroxham-gb in reply to BellaBee10]

Try 119 Nic.x

[RosettaClapp in reply to BellaBee10]

I just tried again and got no where on 111

[Mtk1 in reply to RosettaClapp]

I share your utter frustration, I have contacted NHS as suggested, received email saying contact Gp, so I contacted practice manager ( for second time) who said she will look into it, just received phone call from her saying they never received letter from NHS, and that I should contact my consultant and send a copy of the letter to them, I give up.😤😤😡🤬

[Annie1920 in reply to Mtk1]

Please don't give up.. The NHS England site told me it is definitely down to the gp and what coding they put on our medical records.. The right coding automatically refers our case to the official data base and also that if practice managers don't know (they should do evidently!!) they should ask their area management team.. The hospital only have the facility to write to GPs who actually do the business.. Or not in our cases I suspect

[Mtk1 in reply to Annie1920]

I’m afraid I have to for my sanity, I1st asked my consultant who was rude and told me not to get ahead of myself, I have emailed nhs, I have emailed and phoned practice manager twice, only to be told she never received this letter and that I should contact my consultant, sorry but it gets you down.

[Annie1920 in reply to Mtk1]

They did get an email if you go on to gov. Com you can find a copy.. They were sent one at the beginning of September to tell them we are severely immunocompromised and needed 3x doses plus a booster then another at the beginning of December to tell them who is eligible for antibody treatment and we are included there too I think an email to the practice manager with links to both and adding the fact that gp coding on our medical records is what gets us onto the NHS database for antibody treatment would be in order.. That's what I did today and if I don't get an where I will put I a formal complaint to nhs England

[Mtk1 in reply to Annie1920]

I have already sent the copy of the letter you are referring to to the practice manager and she is saying she never seen it and it must have been sent to my consultant at hospital. I know she will have received it as the reply from the nhs said all Gp practices were sent it on the 9th of December, I have also sent that to her and I’m waiting for a response.

[Annie1920 in reply to Mtk1]

It's a dereliction of duty of care in my book that gp surgeries are not getting this organised for us.. Nhs England were very clear that to be on the NHS database depends entirely on the coding put on our medical records by GPS.. Nothing else.. Hospital consultants can write to ask gps to sort it out but not refer patients themselves.. Its just so exhausting chasing up people that are negligent

[Mtk1 in reply to Annie1920]

I agree, and I have raised a complaint with Healthwatch, they have acknowledged my email and said they will be in touch soon, I will be posting something soon I hope, I may be coming over to my Gp practice like a pain in the bum, but I know I’m right and don’t care any way.Dave.

[RosettaClapp in reply to Mtk1]

I know for certain my gp thinks I'm a pain in the bum ...so you're not alone ..I spent three years getting a 'severely frail' notice off my records(Im no where near severely frail btw) and now I want a severely immunocompromised one put on ..BUT if we dont fight our own corners we risk being condemned for being old and not worth saving

[BluMts in reply to Mtk1]

Yep, its round and round, till you're exhausted.

[BellaBee10]

Thank you. X

[BellaBee10]

Emailed. And thank you from my daughter. She was put on immunosuppressants last month for bowel disease and has just had a positive lateral flow. I've sent screen shots of this letter onto her. Thank you

[Jm954 Administrator in reply to BellaBee10]

I hope she gets an antibody and a speedy recovery x

[Newdawn Administrator in reply to BellaBee10]

Nic, this article contains the telephone numbers of Health Boards to ring in order to check eligibility;

nhsinform.scot/illnesses-an...

Apologies…it only relates to Scotland but will help our Scottish members wondering what to do.

Newdawn

[BellaBee10 in reply to Newdawn]

Thank you for this..

[Belfastbees in reply to Newdawn]

That's an interesting read. I'm in NI and I have not found anything online relating to policy here. I notice in their list of criteria the include anyone with CLL, treated or not, see pic:

CLL criteria

[Newdawn Administrator in reply to Belfastbees]

This is what Blood Cancer U.K. posted about this including NI. It’s the same process as in England;

What you need to know

If you get covid symptoms, get a PCR test as soon as possible. Then follow the instructions for your country.

England and Wales

If your PCR test comes back positive and you've already received a letter about the new treatments, you should be contacted by the NHS within 24 hours to discuss treatment. If this doesn't happen, or if you haven't had a letter yet, contact your doctor, medical team, call 111, or contact your Health Board (in Wales) to ask for a telephone assessment for the new treatments.

If helpful in your conversations, here is the letter sent to healthcare professionals instructing them about this process in England.

Scotland

We understand that Scotland is planning to send out letters to eligible people, but this hasn't happened yet. If your PCR test comes back positive, you'll need to contact your Health Board for a telephone assessment. Go to page 9 of this document to find contact numbers for each Health Board (see Appendix 2: Board Single Points of Contact for Referral).

If helpful in your conversations, here is the letter sent to healthcare professionals instructing them about this process in Scotland.

Northern Ireland

If your PCR test comes back positive, you should be contacted by the NHS within 24 hours to discuss treatment. If this doesn't happen, contact your doctor, medical team, call 111, or contact your Trust to ask for a telephone assessment for the new treatments.

If you are told you are not eligible for new treatments

Not everyone with blood cancer will be eligible for the new treatments, even after a telephone consultation. In this case, you could think about joining the PANORAMIC trial. This trial gives you a 1 in 2 chance of getting molnupiravir (half the people on the trial get molnupiravir and half don’t).

You can sign up to the PANORAMIC trial yourself if you have covid symptoms, a positive PCR test, and you are aged 50 or over, or 18 to 49 with an underlying condition.

Newdawn

[Belfastbees in reply to Newdawn]

Thanks Newdawn, I will be speaking to my GP this week so I'll sound her out. I'd prefer to know the score prior to getting covid. The advanceme issue of the pcr test would be advantageous as the testing is bound to come under pressure and delays could be encountered. I don't know how everyone else feels but I feel its likely all but the most careful of us will catch this. I am hopeful of my chances but it's good to have the information to hand.

[Indoorbowlers in reply to Belfastbees]

There have been quite a few posts on this subject on Blood Cancer UK website - and I’ve seen W&W people saying they’ve had the letter/test, but also people who are on treatment who haven’t heard anything. I think a lot (incl my husband) are still waiting! I also mentioned this yesterday to a friend with stage 4 breast cancer and she hadn’t heard anything about it. It seems very hit & miss!

[Belfastbees in reply to Indoorbowlers]

It does indeed. There seems to be a great disconnecetion which is hard to fathom in this technological age. We should expect better, a lot seems to be accepted because the NHS is free and held in high regard when it works properly, as it should be..

[chillsome in reply to Newdawn]

Hello Newdawn I am.in Scotland but have received no equivalent letter. Do you know if I should have if so I will use the contact no. you kindly provided.

[chillsome in reply to Newdawn]

Sorry ignore me! I have just read your later reply explaining the position in Scotland.

[Psmithuk in reply to BellaBee10]

Hope she has got through to them and is going to get the medications. 🤞for a speedy recovery.Cx

[Mtk1]

I sent a copy to my practice manager, but she said to wait till after holidays, but I will contact the email address shown, can’t do any harm, thank you.

[BellaBee10 in reply to Mtk1]

This is the reply I just got. No PCR test. Just instruction to call round.

This is the reply I just got.

[Mtk1 in reply to BellaBee10]

Yes I have just received exact same reply, now waiting for reply from my practice manager after sending her copy of letter.

[mrsjsmith in reply to BellaBee10]

Nic,

Have you checked the list of CMDU’s ( somewhere here ) to find your nearest to be prepared and ask 119 for a PCR test because you don’t yet have yours. Be prepared

Colette 🤞

[RosettaClapp in reply to mrsjsmith]

I rang my nhs trust and they said they are planning to set up two CMDUs ...not very reassuring that they arent n place yet..n the published list there is an empty space next to Somerset ...one of two as far as I could see sadly

[mrsjsmith in reply to RosettaClapp]

On my list Salisbury, Weston super mare, Bristol, Swindon and Bath are listed with a contact email.

[RosettaClapp in reply to mrsjsmith]

none of these are within my nhs health district sadly (Somerset is proposing Yeovil and Taunton from what they said but they aren't up and running yet )

[AnnHow in reply to BellaBee10]

My brother received the same reply too. Has now emailed back to say it’s not about what he might ‘feel’. It’s an unambiguous clinical condition which is in the Appendix of their policy.

[Newdawn Administrator in reply to AnnHow]

When the Infectious Diseases Consultant checked my eligibility for MAB’s by ‘phone, he simply made sure my situation was covered by the eligibility criteria. There was no questions as to how I felt, how serious the Covid was or any other factor. Having CLL qualified me (along with being on treatment and having hypogammaglobulinaemia). It’s a checklist not an assessment of clinical presentation was my impression.

Newdawn

[RosettaClapp in reply to Newdawn]

that is heartening that inspite of you not having received the testing kit or letter at that stage you still got the phone call after your positive test

[Newdawn Administrator in reply to RosettaClapp]

Oh I had received the letter Rosetta but not the PCR test. That’s how I knew I should be contacted within 24 hrs after a positive Covid result.

Newdawn

[RosettaClapp in reply to Newdawn]

so you must be in the nhs data base I have received neither sadly

[Newdawn Administrator in reply to RosettaClapp]

Did you receive regular shielding updates last year Rosetta?

Newdawn

[RosettaClapp in reply to Newdawn]

Yes I did but I think my gp has recoded my records since ..I had to ask to be categorised as ECV even though I had already started on obinutumazab at the time my gp is sure that CLL is minor ailment and not a real cancer ..he said that to me when I asked him if I should be shielding ..so un uphill struggle all the time ...I fell and broke a couple of ribs in 1985 and he has categorised me as severely frail since then ..it has taken me three years to get that label removed ...I am nothing like frail so I think this may be revenge

[Newdawn Administrator in reply to RosettaClapp]

I don’t need to say what I think of your GP’s cluelessness Rosetta 🙄

This classification of ‘extremely frail’ isn’t one I’ve heard used in GP surgeries but some years ago, some of the surgeries signed up to a contract with the Trusts to classify the top 2% of their patients as extremely vulnerable. The intent was to give these patients a Care Plan (which was supposed to be reviewed but rarely was) as a means to proactively keep them out of hospital. My GP signed me up to it as a CLL patient even though I was only 56 at the time. I went along with it as it was supposed to guarantee me faster access to services. I’ve used it to my favour on occasion. I’m wondering if that’s what your GP included you in?

I’d try to circumvent his involvement and do it through your haematologist.

Sorry you’re having such a hard time.

Newdawn

[Annie1920 in reply to Newdawn]

The severely frail label is in fact generated by an algorithm and the nurse who was there when I spotted it told me it was for them and none of my business!! It was on my records and had it been picked up at an A&E after say a car accident and I was unconscious would mean palliative care only!! This definition includes the inability to look after oneself in any way and is supposed to be clinically assessed .. I was FURIOUS.. I still work and run 3 houses including the general repairs and three gardens .. It has been removed now but it was a real uphill struggle.. I have lost faith in my gp since then and am seriously thinking of changing surgeriesI did ask the NHS Trust about who can refer and the hospital can only recommend that the gp a mends the coding.. So I am not sure that will work either sadly.. The MP has promised to chase it up for me so we shall see if he gets a result

[Newdawn Administrator in reply to Annie1920]

My reply was to Rosetta but it seems you’ve had the same experience Annie. Unfortunately doctors can put DNR (do not resuscitate) instructions on our records but it’s quite unethical not to discuss this with the patient/family. I certainly don’t blame you challenging this strongly. You should have access to your records.My GP put ‘resuscitation attempts must be made’ on my care plan without even discussing it with me but I was relieved! 😳

Newdawn

[RosettaClapp in reply to Newdawn]

I have joined twice so Rosetta and Annie from two different machines.. both are me I keep meaning to merge the account but I'm not sure how to...I do have access to my records but this severely frail flash was separate to medical records and not noted there .It popped up on the page every time any medic accessed my records so unless I had actually looked at the screen the medic was using I would not have know it was there ! grr I was VERY Cross .a) that I had been categorised as such when It is obvious that I'm not at all frail and b) that I wasn't told ! you can imagine ...I am seriously thinking of changing practice but I have been with this one for more that 50 years now and am reluctant to change ..

[RosettaClapp in reply to Newdawn]

the dnr tag is a blight, I think and when its decided by an algorythm its even worse !

[JigFettler Volunteer]

Thank you!

I got my PCR and a 15page booklet.

No letter.

NHS England.

Jig

[Newdawn Administrator in reply to JigFettler]

The letters came before the PCR test Jig. In my case 16 days before.

Newdawn

[FairweatherSailor in reply to Newdawn]

Hello Newdawn. I got an email and then a PCR test the next day. Do you think it matters that I have not actually got the letter ? I’m in Surrey UK. Thanks

[SERVrider in reply to FairweatherSailor]

Fairweather Sailor, Which hospital in Surrey are you under? I am treated by the Royal Surrey (Dr Lis Grey-Davies).

FWIW, I got my letter from NHS England well before Christmas and two days later received the PCR test kit.

[FairweatherSailor in reply to SERVrider]

I am on W&W with Royal Marsden in Sutton. They have been absolutely fantastic throughout . Kept me very informed and were always available if I had any queries. No complaints about them at all ! I do however sometimes get confused as to where the line is drawn between the Hospital , the NHS and the local GP practice ( who have also been very good and very supportive) . This letter /email seems to come from the NHS direct and not sure why some in get mails, some letters and some both ! But ultimately I have an email and a PCR test ready to go , so I can't complain !

[SERVrider in reply to FairweatherSailor]

My bone marrow samples were sent to the R. Marsden for confirmatory analysis to confirm the CLL diagnosis. The R. Marsden is also one of "our" SERV hospitals in that we regularly transport patient samples there and to their London unit from other hospitals in London, Surrey, Sussex, Kent and Wessex. Occasionally from further afield via other blood-bike groups. Sometimes we do deliveries from the Royal Marsden but only night-time emergency quantities as these are mostly done on the daytime bulk logistics system.

[Newdawn Administrator in reply to FairweatherSailor]

Some people received emails and/or letters so it doesn’t matter as long as you were informed. I didn’t receive an email. You’re still in the system.

Newdawn

[FairweatherSailor in reply to Newdawn]

Thanks Newdawn. I just looked at the letter above and it is in fact the same as my email. So all good .

[FeistyGirl in reply to FairweatherSailor]

My email was exactly the same as the letter. Getting the priority test kit seems to be key.

[flyhigher in reply to Newdawn]

Same as JigFettler. 1 PCR - 0 Letters. This randommess [sic] of output from the NHS is the cause of so much confusion.

Last autumn I received a letter from the NHS telling of an appointment one month after the letter was dated, two weeks after the appointment itself, with the postmark showing the letter wasn't even posted by the NHS until one month minus two days after it was written. There is simply no excuse for this, not even Covid.

Fortunately, a reminder text arrived on the household phone two days before the appointment, and that was the only way anybody even knew there was an appointment. But that triggered me having to ring around to find out who had texted, and even who was being texted since in our house we have the one mobile phone and the text had no salutation. Was the appointment for me or my wife? Was it from haematology, dermatology, diabetes, kinee department or even someone else? Even, what hospital was texting. Was it QA or was it St Mary's or even somewhere else?

On a brighter note, I'm booked for my 4th jab this week. Through GP. Thank goodness they are on the ball, saying the NHS systems (they use) still can't recognise a third jab so can't offer a fourth booster, but they, the GP, can and do override 'NHS computer says no'. I don't care any more whether they are right or wrong, I only care and appreciate that they are doing what they should be doing. Although even then I had to request the booking - I wasn't invited, despite every exhortation in every corner never to contact anyone but always to wait until invited.

[RosettaClapp in reply to flyhigher]

I think the root problem is that a lot of the old nhs departments that did communicate with one another have been covertly privatised and are now autonomous for profit companies,and being such do not communicate with one another sadly

[bkoffman CLL CURE Hero]

The US could learn from the UK.

[Fran57]

Hello and thank you.Please would you mind letting us have the email address… I’m afraid I can’t quite read all of it on your letter?

Many thanks,

Fran 😉

[Hardy2018 in reply to Fran57]

I think you can see it if you click on the image and it gets enlarged:

[e-mail]

[Fran57 in reply to Hardy2018]

Thank you 😉I have emailed them. I will let you know if I get a response.

Stay safe,

Fran 😷

[Annie1920 in reply to Fran57]

I phoned them

[BellaBee10 in reply to Fran57]

This is the reply I just got from my email. No offer of a PCR test to be sent.

Reply from NHS England.

[Fran57 in reply to BellaBee10]

☹️I will let you know what response we get.

Stay safe,

Fran 😷

[aloneifly]

I received the PCR but with things missing like the all important return box.I called 119 but all they could do was send me a normal home test which won't be returned by priority

Has anyone else experienced this?

[RosettaClapp in reply to aloneifly]

maybe ring nhs England ? the person I spoke to was very helpful and actually listened to what I was asking (not reading from a script like the 111 folk, who just asked me if I was taking vitamine D when I asked about antiviral eligibility !!)

[Stickybud]

I live in England and am W&W and haven't yet received the letter (or email) or the home PCR test kit as referred to in the letter of Dec 14th (as provided by Jm954). The advice seems to be to wait till January 10th and contact 119 if the PCR test kit has not been received by then.

I have been contacted many times in the past re shielding etc. so I'm not sure why I haven't yet been contacted re the PCR kit.

I am not completely confident that I will have received my PCR test kit by Jan 10th.

And I am also not completely confident that phoning the 119 service will help.

I originally thought that the Covid Data Resolution Team could help (accessed via 119 option 4), but I have just found out that they only deal with issues relating to vaccination records and they don't have access to NHS medical records.

Finally.... my question is - what can I do to make sure that I am sent a PCR kit ? Or, alternatively, does anyone know how to check the personal setting that determines whether a person qualifies for a home PCR test kit and also how to request that it is changed?

Thank you very much to everyone who is offering advice and support here.

John

[Sumoldbloke in reply to Stickybud]

See my post of one minute ago.

[Stickybud in reply to Sumoldbloke]

Hi Paul_Jon, I'm sorry but I cant see your post of one minute ago? John

[Sumoldbloke in reply to Stickybud]

Oops sorry about that I’ll see where it has gone. In essence it was to say that the problem comes down to GPs not coding CLL patients correctly as high risk but only as “at risk” . This means they are not identified to receive the pack with PCR test. I am awaiting contact from the practice manager today. I will post if this works.

[mrsjsmith in reply to Sumoldbloke]

I think the practice manager may say the coding of Clinically Extremely Vunerable is down to your Consultant telling the practice.Good luck.

Colette

[Annie1920 in reply to mrsjsmith]

No emphatically not.. The consultant can only ask the gp to update coding.. The letter gps got at the beginning of December defined those eligible and we were included whether or not we were in treatment

[Stickybud in reply to Sumoldbloke]

Thank you very much. That makes sense. I'll look forward to an update

[Annie1920 in reply to Stickybud]

Get in touch with your gp and make sure the coding on your medical records is the relevant one.. If they jib refer them to the area management team.. That is the advice I got from NHS England on the phone yesterday

[Stickybud in reply to Annie1920]

Thank you very much, Annie1920. Originally I didn't want to bother my GP as I'm sure he / she is very busy. But I think I'll now do as you say as I would like everything in place should I become infected. Thanks again. John

[Poodle2]

No letter and no test here. Will try the email and 119 tomorrow as well, this is frustrating. Thanks for sharing.

[BellaBee10]

This is the email NHS direct sent me. I've just forwarded onto the GP practice.

NHS England email

[Indoorbowlers in reply to BellaBee10]

Thank you for this. I was just preparing an email for my husband to send to Practice Manager and specialist - so maybe this info will make sense to them!

[BellaBee10 in reply to Indoorbowlers]

Good luck 🤞

[Indoorbowlers in reply to BellaBee10]

Email sent; Practice Manager came back very quickly to say she’d passed onto a doctor ...... so we’ll see what happens. If nothing heard by mid week I have a letter ready to go to my husband’s haematologist, to see if he can lend his weight.

Whilst doing this letter, I had a look at the (rather thick) file of correspondence he’s had over the last two years; we have enough ‘you are Clinically Extremely Vulnerable’ letters to paper a wall - but the last one was the September letter saying that shielding had ended. He never received an ‘official’ letter saying he should have 3rd primary dose - so I wonder if something happened to the way he’s listed around then? (He got the 3rd dose from our practice, and he’s booked with them for booster in a few weeks, plus haematologist wrote to GP to say 3rd & booster were needed). If this error isn’t corrected my worry is he could miss out on future treatments eg if prophylactic antibodies are authorised, or a further dose recommended.

[BellaBee10 in reply to Indoorbowlers]

I've not have a reply from my GP practice either. I'll let you know if I do. Re 3rd dose, I sent in docs published by Blood Cancer UK and CLLSA to get that organised.

[Indoorbowlers in reply to BellaBee10]

It makes me so cross when I see people like Mr Javid on TV, patting themselves on the back and talking about the treatments that are there for the CEV. He thinks it’s all going swimmingly! BCUK say they are aware of problems and are talking with NHS 🤞🤞🤞

[RosettaClapp in reply to BellaBee10]

I have copied your reply and sent it to my GP too ..but Im not holding my breath as they move very slowly these days and my gp has always thought the CLL is not really a 'proper' cancer like breast or bowel cancer ..He actually said that when this virus started up sadly

[BluMts in reply to BellaBee10]

Thank you Bella, I have waited and its now clear I will not be receiving the letter or test kit by 10th. I've been unable to get a response from my surgery on this. Now I'll copy your letter and send it with my personal request that they check my file.

I am feeling extremely browned off. I really hope I've not had my code changed as have had all previous shielding letters and vaccines offered to the very vulnerable. This brings back unpleasant memories of my GP turning down my request to see a consultant when tests she'd requested came back with repeated high lymphocytes and white blood counts, saying she would treat me and she'd not call what I had Leukemia when I suggested this might be what I had. I really really hope that I don't have to push for action again. I find it so awkward and exhausting. But that's life I guess.

[BellaBee10 in reply to BluMts]

I'm really sorry. That's was awful of your GP. Sometimes all the pre-diagnosis angst some of us went through comes flooding back. For me, not being listened to was a big thing too. Fingers crossed we won't need this but it is upsetting to have been missed off. Good luck chasing it up. I'll have another run at it on Monday. Best wishes. Nic

[IWVC]

This is getting more confusing for me. I rang GP and the person read out my vaccination record which stated the type and dose, but it didn't record whether it was 3 primary or two primary and a booster. She said my GP record had me down as a vulnerable person but insisted that I call 119 about further vaccines, which I did. However, 119 insisted that my GP records should state whether I was CEV and required a 4th jab as a (proper)booster, as their 119 records do not call for another vaccination. It did not appear that the status of my 3rd vaccine was on 119 either. I told 119 that the GP surgery had told me to contact them, and they didn't have any information on the status of my 3rd vaccination. 119 then recommended using my local walk in centre (the same place where I had all previous jabs) and asking for a booster. I'm not sure that this is the best approach as even if they do provide me with a jab, the crucial link to availability to nMABS should I be unfortunate enough to contract COVID is still not there.

Ian C

[BluMts in reply to IWVC]

You have my sympathy.

[IWVC]

Just to update my recent comments. I emailed the GP practice with a long email starting from the beginning with being on the Shielded Patients List and my first vaccination being part of the vulnerable group. I then covered the issue of 3rd primary v booster and my inability to find out whether I was still classed as CEV and due 4th (1st booster) vaccination and if I would have MAB treatment options if I fell ill with COVID. This time, my actual GP phoned me back the following day (Friday). I have had the same GP for many years and have good confidence in him. He started by saying that my CLL was stable (I'm W&W) and I was not in any immediate danger. BUT he agreed that I should have an additional booster and that I should qualify for MABs if I became ill. For the 4th vaccine, he said that he'd talked to a Pharmacist colleague working at our local walk in centre and that now, as they are dealing with walk ins rather than booked appointments, it would be best to go along next Friday and just ask. If there is any issue to get them to phone the GP surgery, and they will clear it. As for the MABs treatment, he understands the system to be that if I test positive for COVID - even with only a lateral flow test - to log it with the NHS website and as they have my records, that should be sufficient to trigger the MABs process. If after 24 hours of notification I hadn't heard from them to phone the surgery and they have a mechanism to activate it. (I did use a lateral flow test about a year ago and as required, notified them of the negative result and had a confirmation email, so the serial number for my box of tests is at least logged as used on their system) He did tell me where the nearest centre was - not particularly close but at least in London. So I will try the walk in for the booster next week and hope that if I'm unlucky enough to contract COVID it is on a day I can access the surgery by phone if the NHS system doesn't respond.

Ian C

[Newdawn Administrator in reply to IWVC]

That’s good to hear Ian. Just a little proviso. The guidance does say a PCR activates referral and call about MAB eligibility. Could be the new rules about not needing a PCR may suffice but I’d be wary about deviating from the system. It’s dodgy enough to start with! 🙄

Newdawn

[IWVC in reply to Newdawn]

Newdawn. Yes we did discuss that, but again he is of the opinion that the current situation with lack of PCR capability is such that notifying of lateral flow should be enough. I do have the backstop of a promise that the GP will back me up IF I am unlucky enough to be at that stage!

Ian C

ps as much as I want to get out, I'm not about to change my risk pattern

😷😁

[Newdawn Administrator in reply to IWVC]

Let’s hope you never have to test it out Ian 😉

Newdawn

[Newdawn Administrator in reply to IWVC]

Ian, just a follow up from me further to our other discussion. It’s becoming clear that it must be a PCR test to trigger treatment for those eligible as outlined by the new guidance today. I’m afraid your GP’s suggestion that a lateral flow test might suffice isn't accurate.

‘People who receive Test and Trace financial support, those taking part in Covid research studies and about one million people in England eligible for new NHS treatments for Covid will all be asked to take a follow-up PCR.’

Newdawn

[mrsjsmith in reply to Newdawn]

Thank you Newdawn,

Something I have missed. What is todays new guidance and could you post a link please.

Regards

Colette

[Newdawn Administrator in reply to mrsjsmith]

Here it is Colette;

gov.uk/government/news/conf...

Newdawn

[mrsjsmith in reply to Newdawn]

Thank you for your prompt reply

PS interesting that they are now saying upto mid January for us all to receive PCR test kits.

Colette