Uk What is the exact SNOMED code for CLL to get priority PCR test kit and letter?

[Greencyclist]

In the continuing saga of trying to get a priority PCR test and letter does anybody know the exact SNOMED code For CLL that has to be on your medical records in the UK for you to get a priority PCR test and letter from NHS England? I am going round and round in circles being pushed from 119 back to GP then to NHS England and then back to GP again! I am probably the most stressed frustrated and worried That I have been during the whole of the pandemic by the situation,plus the transmissibility and number of cases of omicron, and I do not have any antibodies despite three vaccines.

[AnnHow]

My understanding is that it’s more complicated than NHS England are saying. A GP sent me a link to the rules and they are quite complex. digital.nhs.uk/coronavirus/...

[mrsjsmith in reply to AnnHow]

Ann,

Goodness I just had a quick look and I was totally baffled. Obviously I am not a clinician but it’s extremely complicated.

Colette

[Mtk1 in reply to AnnHow]

Thank you, yes definitely states cll as a cohort.

[Psmithuk in reply to AnnHow]

Bloomin' 'eck! No wonder the GP's have trouble trying to sort it out!Luckily I am so well over 12 years it’s in the far distant past 🧓🏻,

Chrisx

[CguLLer]

See the post here healthunlocked.com/cllsuppo...

[AnneHill]

I was lucky because my kit arrived in the post without trouble. I have also had a letter giving me permission for a 3rd vaccine and booster. Vaccine4. Also an nhs antibody test.I would contact your hospital consultant or haematology dept. I find my gp surgery always want authority from the consultant. Good luck.

[Ghounds]

If you have a nurse specialist try contacting them. My carer did this today after a week of frustrating conversations with 119 and my incompetent and disinterested GP surgery. The letter is on the way! I have a non priority pcr which I can either use or take to a drive in clinic if well enough. Or the nurse said if a lateral flow is positive to contact oncology.

Hope this helps someone!

This whole process has been shambolic, disheartening and depressing in the extreme. Nobody seems to have any idea of what they are meant to be doing and quite frankly some of them don't seem to care much.

End of rant.

[Annie1920 in reply to Ghounds]

I can completely sympathise with all you have written.. I feel we have been abandoned especially by some gps (mine included sadly)

[Psmithuk in reply to Ghounds]

I don’t get much help from my CNS, she doesn’t always answer my emails and isn’t aware of a lot of the new stuff.Chris x

[Floxxy in reply to Psmithuk]

Ask for a phone number so that you can speak to them directly. X

[Floxxy in reply to Ghounds]

My CNS reassured me too. She told me to arrange a PCR at a drive through (quicker result), phone her to let her know and she would sort it out. She told me that so many of her patients were having problems. X

[Jetliz]

My heart really goes out to you I have always considered myself positive through the pandemic but obtaining this PCR kit that's specifically barcoded to me has reduced me to tears through hitting brick walls similar to you.My husband went on Gov.UK PCR request followed a few stages NO to symptoms and YES to vulnerable then entered my personal details and this enabled me to receive the barcoded personal PCR kit. Received next day.

My haemotology department have now sent me and my daughter who also has a blood cancer a letter to explain that we have possible access to treatment due to our condition should we need it. I'm wondering therefore if it's a letter to be sent out to everyone.

Wishing you success and stay safe

Julia

[Annie1920 in reply to Jetliz]

Sorry to be pessimistic ut although your PCR test is personalised can I ask if it has the red priority sticker? If it hasn't (which mine hasn't) it's not a priority kit and may well take too long to get the results back to be eligible for antibody treatment sadly.. My consultant told me yesterday to contact emergency cancer phone number after +ve latflow and follow up with PCR so they can refer to CMDU

[Jetliz in reply to Annie1920]

No having looked again no red barcode just says registered personal kit. My specialist nurse did say I have an emergency number to use and follow the same procedure as you mention . I realise time is of importance and this still hasn't got to the root of the coding problem but I think her reassurance just gave me a bit of positivity before I carry on pursuing the GP route. Quite honestly I think the stress can't be good for anyone of us. Just to add to complications my daughter received the correct kit barcoded at Christmas and we're both under the same GP her blood cancer is different but I feel surely this should be picked up on but just keep getting passed around. It's not acceptable really.

[RosettaClapp in reply to Jetliz]

I have come to a reluctant conclusion that GPs or a lot of them dont know what they are doing with the coderead system ...and I did the same as you ordered an ordinary PCR to keep by me just in case ..Heres hoping we wont need it

[Jetliz]

In addition to my first reply my daughter has seen on Leukaemia Care Facebook that the code our GPs need is CLL C19.11 I am not on Facebook but it's worth checking out if interested.

[BluMts]

Greencyclist, I am exactly in the same position . Having SAME experiences and VERY stressed. It is a fact that not one person in any place cares to help me sort this out. I have a husband who I have to look after, drive to medical appointments and accompany and I really would appreciate knowing I can get the monoclonal antibodies if needed. But no help anywhere. Sorry I can't help you other than sympathise.. I have seen codes on various documents, but careful with this as you need to be absolutely certain before quoting the code to anyone. GOOD LUCK to you. I am really despondent, try not to get there.

[Annie1920 in reply to BluMts]

I do believe that the complexity of the read code system and that many many GPS don't have a handle on it is the root of this mess.. And instead of admitting that it's that everyone is passing the buck sadly.. Leaving us all hung out to dry

[BluMts in reply to Annie1920]

Exactly and I find this almost as depressing as my personal situation in not being able to get on the list. I look at the situation in politics and we just seem in an unholy mess.

[Sumoldbloke in reply to BluMts]

So sorry that you are feeling really stressed about this shambles. However the most important thing is that if you are unfortunate enough to contract COVID19 as measured by a lateral flow then contact your hospital , your GP and 111 for a referral to get the new drug therapies. We are all entitled to these as CLLers, it is just that we are going to have to be proactive in getting access rather than the system finding us automatically. In the meantime we just keep pushing the various cancer charities and our specialists to resolve this.

[BluMts in reply to Sumoldbloke]

Thank you for your words. They are some comfort. But unfortunately I cannot muster up much hope than in a crisis, feeling unwell, given my situation be able to solve the problem. I do feel strongly that I need to get on that list so that if I get Covid I do not have to be trying to contact someone who is prepared to sort out records. If one is being treated at a large NHS hospital with a Center offering the monoclonal antibodies, that's another scenario.

[goldstream]

Is it 277473004 : B-Cell Chronic Lymphocytic Leukemia (Disorder)

[BluMts in reply to goldstream]

Maybe. But in fact there is another category for CLL patients on treatment in last 3 or 6 months, or of course currently on treatment.

[Annie1920 in reply to BluMts]

I don't think my gp has the hang of a simple coding let alone one that has nuances like that!! Also anti CD20 meds have a diliterious (spelling??) on antibody production for 18 months plus from what I have read....

[BluMts in reply to Annie1920]

Oh well, there you are!! 😀 The people who set up these forms have no idea of the complexities of medicine.

[kitchengardener2]

I am exactly the same, GP knew nothing about it and 119 said that the letter comes from GP. I am part of a Service Users Group in Yorkshire, our next online meeting us next Tuesday. I will ask if they have any guidance. I emailed Leukaemia Care yesterday but not heard back from them. My CNS said that if I have problems to let her know because the Macmillan team have someone working on this. Will mark you as someone to follow if that's ok and get back to you next week.

[Greencyclist in reply to kitchengardener2]

yes thanks very much for that if you could let me know. I have just posted A new general reply to everybody, As I was a bit overwhelmed by all the replies but thankful! I’m not very good with the technology!

[BluMts in reply to kitchengardener2]

I hope you were marking me. Not sure who you replied to.

[kitchengardener2 in reply to BluMts]

No actually Greencyclist but happy to add you as well. It was only so that I could find the relevant post to reply after my SUG meeting.

[Stickybud]

What is more stressful?A- no monoclonal antibody or antiviral treatment available

Or

B - Covid treatments formally available, but you may or may not get them in time.

I say B. I agree with you, Greencyclist - much more stressful nowadays.

[bennevisplace]

digital.nhs.uk/coronavirus/...

Scroll down and you'll see that despite the complex framework, the logic rule for CLL patients encompasses all. So the only way the computer can say no is if the code for this medical condition is blank or incorrect.

You can ask your GP to confirm that in sharing your medical records with NHS Digital they have correctly coded you as a CLL patient. Your GP has a legal obligation to do so at your request

legislation.gov.uk/ukpga/20...

[Greencyclist in reply to bennevisplace]

Thanks I will keep trying my GP surgery. They still haven’t answered my question on what is my actual coding on my medical records

[bennevisplace in reply to Greencyclist]

If you haven't already done so, put your request in writing, explaining your predicament. Email practice manager, cc your MP parliament.uk/get-involved/...

Check this out beforehand

ico.org.uk/your-data-matter...

[RosettaClapp in reply to bennevisplace]

thats what I did ! no reply of any sense from any of them as yet and thats nearly 2 weeks now sadly

[bennevisplace in reply to RosettaClapp]

If no response at all, not even an acknowledgement, that's pretty poor.

[Annie1920 in reply to bennevisplace]

Acknowledged by mp with sympathy ..gp did write me a note to get 4th jab but nothing about the databasevor the priority kits ..nhs E said definitly it was down to gp on phone CCG said they were planning to do something soon (!) 111 said they couldnt help and 119 did eventually send me an ordinary PCR to have at home ..so really no solution from any of the lot of them ..youre right ..it is a very poor show after we were promised access to such care

[Annie1920 in reply to bennevisplace]

I have tried for the last 2 weeks to ask exactly this question of my gp.. I got a reply at first to say it was nothing to do with them.. Now I have written a letter only to be told that it will take at least a week before mail is even read let alone acted upon.. I dispair.. if/when I get infected I have decide I will go to a walk in test place and then ring my cancer hotline number at the hospital that has the nearest CMDU it's not close by though.. 30 miles at least.. A sorry state of affairs sadly

[bennevisplace in reply to Annie1920]

It's not good enough really. We should not have to do the surgery's homework for them, but I fear headless chickens are going to be running around for a while yet.

[RosettaClapp in reply to bennevisplace]

I think from comments I have put on here and elsewhere about my predicament Blood Cancer Uk contacted me the day before yesterday to ask if they could use my experiences to put forward to the health ministry ...I felt it was comforting that we who are severely immunocompromised have such a strong avocat on our side at least even if we have been missed off the nhse database

[strongmouse]

I don't know the answer, but see someone has replied with the code. Thought some might be interested in our recent (positive) experience.

My husband has CLL, is on the watch and wait, but also has rheumatoid arthritis and has been on methotrexate (which suppresses the immune system). Since early on during the Covid Pandemic he was put on the very vulnerable list. We were surprised when he had a letter at the beinning of January saying that he would be eligible for a home PCR kit and followed up should he develop Covid. Within a few days the emergency PCR kit came and we were very glad of it. The weekend following he developed a soar throat and his cough (he also has pulmonary issues) was gettin worse. He did a lateral flow test which was positive. Because we had the PCR kit he did the test and I sent it off in the post via a Priority Post Box. The PCR test came back positive and the following day he had a phone call from the local Covid hub.

An NHS doctor talked to him about his symptoms and suggested he went in for daily infusions of the monoclonal antibodies. He wasn't happy doing this because of the risk and instead they sent him the new antiviral medications, which need to be given within the first five days. They worked! I am so thankful.

If you are concerned about the risk of catching Covid and possible complications all I can say is that I am glad we had this option. The doctor at the local Covid hub said the scheme had been piloted in the hospital since December. The courier arrived with the medicine quite late in the evening, but he did arrive.

[Belfastbees in reply to strongmouse]

It's good to hear that the NHS are not failing all CLL patients. I wonder is it the same with other groups who should be on the list. I empathise with a lot of the posters here, the list seems as elusive as Santa's naughty or nice list and about as hard to find out if you are on it.

Its not ideal that I am trusting in the vaccines and my early disease and a good antibody test to protect me. I've made a few phonecalls but got nowhere, like so many.

None of us should have to do this, it is unacceptable. I cannot imagine how anxious it must be for those among us who suspect that covid would likely be very bad for them. It is a worry which could be removed by efficency and competence within the NHS.

[RosettaClapp in reply to strongmouse]

sadly I don't think ,from what I have read ,that everyone on the CEV list was gathered in to the new NHSE data base for consideration for antibody treatment it really is completely dependant on which readcode the gp has put on our records