Priority PCR test and SNOMED coding

[Greencyclist]

Thank you for all your replies and empathy. my GP surgery is lovely but they don’t understand the coding! Etc But I will keep trying! I don’t have a nurse specialist and my consultant does not reply to my emails or respond to any telephone messages.Blood cancer UK have been very helpful and they are in frequent meetings with NHS England and apparently they do understand there is a problem especially with CLL which they are going to try and sort out! but I’m not holding my breath! However I am going to write to my MP , to highlight the problem especially in view of us having to not mix at all and certainly not going to any parties!!

[Mijoed]

Here’s a link to the list. Even here, there are several options for B cell CLL.Not sure what happens if someone has multiple issues. Which code takes priority and does NHS Digital pick this up.

termbrowser.nhs.uk/?perspec...

[BluMts in reply to Mijoed]

Thank you Mijoed but I can't make sense of this information in relation to the form GP's fill in to refer their patients for monoclonal antibody eligibility. Anyway, its probably that I'm uneducated in this matter.

[Mijoed in reply to BluMts]

I think we’re all in the same situation. It would seem some GPs are too 😬

[Notmuchenergy]

CLL Support emailed to say make sure you’re GP has coded you as High Risk. I checked this and the nurse showed me thatI am coded correctly. I phoned 119 and this time got a helpful lady who said if I do get covid to make a PCR test appointment through 119 and explain that I am HighRisk with leukaemia and they will arrange with test centre that the test is prioritised. I do not have a letter or test.

[BluMts in reply to Notmuchenergy]

Do you really have faith that 119 in the event forecast, will be able to instantly or in a couple of days get the test centre to notice their request? That's if you happen to get throught to someone at 119 that wants to do this. Then you'd have to organise a relevant centre to accept your storey and give the medication using their initiative and sence of fair play. Sounds like a difficult job even when well. Just speaking of how I'd feel. You may be more competent. Good luck.

[Kingfisher20]

I am totally frustrated by the situation regarding the priority PCR testing and the hassle in trying to get the appropriate vaccines in a timely manner. My GP practice told me the PCR letter was nothing to do with them and directed me to 119 or my Haematology Department. 119 were of no help, other than supplying a PCR kit, so at least I have one at home. Again they advised I contact the Haematology Dept.

My Consultant's Secretary knew nothing of the priority PCR tests or the letter I should have received. I have emailed her a copy of the Interim Clinical Commissioning Policy: Neutralising monoclonal antibodies or antivirals for non-hospitalised patients with COVID-19, to show to the Clinicians. Unsurprisingly, a week later, I am still awaiting a response.

Of greater concern, is the fact that there may well be other patients with CLL who don’t even realise that they meet the criteria for the priority PCR test and treatments.

Thanks to Blood Cancer UK, Leukaemia Care and CLLSA for their regular updates on information, that I would otherwise never know about.

[bennevisplace]

I just made a new post which gives all the codes on NHS digital relating to the new treatments. I can't give you the link because the post hasn't yet appeared on HU.

OK now it is healthunlocked.com/cllsuppo...