Access to Covid treatment and vaccines

[Moomin8]

Like some if you, I have had to fight tooth and nail to get the Covid vaccines I am eligible for, plus I still haven't got an email or a letter saying that I am eligible for any Covid treatments - if needed.

Well...look what I have found!

digital.nhs.uk/dashboards/g...

I received a reply to an email this morning, which I sent some time back, in response to trying to sort out what was (or wasn't in my case) going on!

'Thank you for your email

At NHSE CCC we are not medically trained nor do we have access to any medical records so I am unable to advise why you have not been sent an NMABS letter. I do have the following information.

The clinical extremely vulnerable group is much larger than the ‘highest risk’ group eligible under the UK clinical access policy. Within this policy, the eligible highest risk group has been determined by the Department of Health and Social Care (DHSC) based on expert clinical advice; it aims to offer treatment to those individuals who are at highest risk of becoming seriously ill from COVID.

A list of medical conditions has been used to identify patients’ who may be eligible for treatment, if they test positive for COVID-19 via a PCR test. Each condition is allocated a SNOMED code which is then placed within a patients’ medical record. In order for you to have received the letter either via email or post, one of these codes needs to be within your medical record. Only your GP or Trust specialist can access your medical record to ascertain whether the SNOMED code/s have been placed onto your medical record. NHS England CCC can't access your medical records to add or remove any codes.

All GPs were issued with a letter on 9 December explaining how to refer patients who may need to be assessed for COVID-19 treatments. This letter is also available on the NHS England website:

Coronavirus » Letter to general practices: deployment of COVID-19 treatments for highest risk non-hospitalised patients (england.nhs.uk)

england.nhs.uk/coronavirus/...

I would advise if you do need to speak to your GP surgery, you ask to speak to the practice manager and not the receptionist, as the Practice manager will have received the above letter and will be able to assist you.

You don’t need to have received a letter to access the treatments, If you test positive using a PCR test or a LFT, Your GP or 111 (out of hours) can refer you for these treatments if they believe you are eligible and someone will contact you within 24 hours to discuss the treatments with you. Your specialist can also refer if they believe you are eligible for these treatments

I am sorry I can’t offer any further advice or assistance on this matter Regards

Lucy

Customer Contact Advisor

NHS England

PO Box 16738 | Redditch | B97 9PT

0300 3 11 22 33

[e-mail]

england.nhs.uk

Regards

Lucy

Customer Contact Advisor

NHS England

PO Box 16738 | Redditch | B97 9PT

0300 3 11 22 33

[e-mail]

An interesting read!

Needless to say, I have forwarded this to my surgery.

digital.nhs.uk/dashboards/g...

In my case, the SNOMED code would be:

ID. 9.

JCVI Condition Group

Those who were receiving or had received in the previous 3 months targeted therapy for autoimmune disease, such as JAK inhibitors or biologic immune modulators including B-cell targeted therapies (including rituximab but in this case the recipient would be considered immunosuppressed for a 6-month period), T-cell co-stimulation modulators, monoclonal tumour necrosis factor inhibitors (TNFi), soluble TNF receptors, interleukin (IL)-6 receptor inhibitors, IL-17 inhibitors, IL 12/23 inhibitors, IL 23 inhibitors (note: this list is not exhaustive)

Identification rubric used by NHS Digital to approximate the JCVI condition groups

[Lolabridge]

Thank you. Very helpful!

[Moomin8 in reply to Lolabridge]

I know you like a bit of info 😏

[Lolabridge in reply to Moomin8]

So true!! 🤓I’m just about to ring my practice manager …

[Moomin8 in reply to Lolabridge]

😬Let me know how you get on 🤞

[Lolabridge in reply to Moomin8]

I just found out that my official NHS Covid vaccination record had been incorrectly amended! The practice manager agrees I'm entitled to my spring booster now (as it's more than 91 days since my last jab) and I should have already received the text inviting me to book in for it!

I also discovered that although there have been several letters from Rheumatology to my GP stating I'm now on Imraldi (adalimumab) that it's not showing on my Patient Access current medication record. 🤦‍♀️ I started it on 7th February and have had 5 doses so far. I pointed out that my record should also show that, as I'm very immune suppressed (and SNOMED code ID9 like you I think), I am eligible for antiviral treatments if I do get Covid.

Following all this I asked whether there was a marker of some sort (a gold star would be nice!) on my record stating that, as I'm very vulnerable to all infections, I may need speedy access to GP advice/appointment and antibiotics. I know the lady well and she apologised profusely and is arranging to sort it all out for me ... but the GP needs to approve it and she's on leave for a week! 🤷‍♀️ 🙄

FGS!! It's all such hard work (and stressful) keeping on top of things. 😩

[Moomin8 in reply to Lolabridge]

That's amazing!! It actually worked! 🥳Good job we have each other 💕Go us! 🥰

[Lolabridge in reply to Moomin8]

🤩

[Stayloose in reply to Lolabridge]

Brilliant!! I will print this off so if my husband gets covid he can put it under the GPs nose! He's already had a discussion with the GP who said it was only for a very defined group of people 🙄.

[Moomin8 in reply to Stayloose]

I'm not saying it will work though 🤞

[Stayloose in reply to Moomin8]

Our GP is obliging but uninformed. He has no connection to the RA side of things. Do you think this lack of coding occurs because meds are prescribed by the hospital not GP?

[Moomin8 in reply to Stayloose]

Who knows🤷🏻‍♀️My GP is supposed to have shared care.

[Stayloose in reply to Moomin8]

Hmm. Trouble is some GPs haven't even heard of the names of the Jaks/biologics.

[AgedCrone in reply to Stayloose]

All GPs received both the original information in the letter of 9December 2021,& the present letter.They either don’t read it, or choose to ignore it.After all, something as important would surely be mentioned between GPs in all areas?

[Stayloose in reply to AgedCrone]

I guess I want to think we'll of my GP. I guess they have loads of stuff to read so don't read it all or don't register it.

[AgedCrone in reply to Stayloose]

But as somebody has previously said ….the practice manager should read everything and she/he should advise …using whatever system a practice uses….. important information to clinical staff…..re Covid & vulnerable patients .& anti virals. But I find DIY less stressful.. The staff who answer on 119 seem very capable and I’ve always managed to get …if not the information I required …at least a telephone number to get it.

[Hidden in reply to AgedCrone]

The practice manager at your surgery can read! How very encouraging 😂

[AgedCrone in reply to Hidden]

Good point….maybe that is the problem….PM cannot read…so not responsible for not circulating info …..nothing would surprise me these days.

[Lolabridge in reply to Stayloose]

Yes I think that may be the reason. It has in my case!

[nomoreheels]

Well done you! That answers the question as to why after a false start I've had no bother in being advised when I can have each of my vaccines. After my h was invited for his first vaccine I questioned of one of my Surgery Practice Managers why hadn't I given was in a previous category to him & should have already had mine. She told me a box hadn't been ticked on my records. This, it would seem, is related to what you have been informed of so thank you for clearing that up. It also explains why I received the PCR kit & further LFT's without requesting them.

NB I’ve never received a letter, that is until the other day reminding me to book my spring booster, which I’d had the week previously after being asked to my email the day before.

[AgedCrone]

I don’t want to throw cold water on everybody’s hopes….but if you are seriously concerned do contact your GP practice and ask them if they do actually acknowledge …in writing…….their responsibility to action any of this.I had long acrimonious “discussions” with my GP…..the sum of which was “ The anti virals are nothing to do with us!”

[Moomin8 in reply to AgedCrone]

I had a very similar conversation. However, it is their responsibility to mark our records accurately.

[AgedCrone in reply to Moomin8]

I don’t know about your practice..but mine deny all knowledge of the original letter of 9:12:21…even thoughtI forwarded the para telling them they would not be required to actually PRESCRIBE the anti virals, just the necessary passing on of information required …that was when I was told “nothing to do with us”.I got the number of my local CMDU …& I was assured I would be treated if I tested positive.

I am just hoping I don’t have to test that info!

[Moomin8 in reply to AgedCrone]

Same for me.

[AgedCrone in reply to Moomin8]

I can’t work out my practice’s modus operandi.I have an appointment booked …I have just had an email changing the time of the appointment …

then in capital letters it says “do not reply to this email it will not be received by your practice”.

So presumably if I can’t make the time they now want to see me….I have to phone them rather than answer their email….making it my responsibility to acknowledge the time change.

Trouble is I 99% know the outcome of the apt… I know I will get the “let’s wait & see” diagnosis…which is NOT going to happen.I shall just book a Private consult with a doctor who knows which way is up…. which is what I should’ve done in the first place…I have become a slow learner in my dotage!

[Moomin8 in reply to AgedCrone]

Good luck 🤞

[Madmusiclover]

Oh wow! The fog thins….

[Hidden]

Thank you so much for posting this 😊.

[Whippet123]

I was contacted by the antivral team as i had a positive lateral flow test Well organised said it would be in the post it never arrived i missed my 5 day window tried to contact but not able too . lucky i was not seriously ill. Apparently there was mistake made and it was never posted.There is now an investigation within the trust.I live in Wales so if you need antiviral meds make sure you have a contact number if things dont pan out

[AgedCrone in reply to Whippet123]

Just to jog everyone’s memory….if you do test positive on a LFT….the test must be a NHS one,…not one bought privately…..& you must have reported it on their website or I think you may be able to do it by phone.Whoever planned this exercise must have been very confused!

[bpeal1]

Just being on a biologic doesn’t automatically qualify you for antivirals (with the exception of Rituximab). You also have to either be on steroids or have uncontrolled disease activity. I had a discussion about this with our rheumatologist when my daughter tested positive for covid (she’s on adalimumab). As she had had a steroid injection a couple of weeks before the rheumatologist said it was 50/50 whether her disease was classsed as uncontrolled. As she was testing everyday at that point and it was only day 1 we decided to leave it 24 hours and see how she was. She felt pretty rough the first day but rapidly improved after that

However, I can also confirm even if you were not sent a letter or PCR kit you can access antivirals. I tested positive on a Saturday on a LFT and phoned 111. As I’m on Rituximab it all happened very smoothly and less than 24 hours later I had taken my first dose.

[CagneysMum in reply to bpeal1]

Same here. No letter … no PCR test kit but when I had a positive lateral flow test result I phoned 111, someone called me back to confirm eligibility for antivirals and they were delivered by the Fire Service (curiously?) within 2 days. Excellent service.

[Moomin8 in reply to CagneysMum]

Excellent service! 🚒

[Hidden in reply to CagneysMum]

The fire service!! That’s amazing and demonstrates cooperation between emergency services which should give us all hope.I wonder if my GP will come round with a ladder and get my cat off the roof.....

[CagneysMum in reply to Hidden]

😂😂😂

[AgedCrone in reply to Hidden]

Only if you have pet insurance!

[Otto11]

Thanks for posting. I contacted NHS England earlier this week after never having received a letter or text & a PCR LFT’s etc I received the same response as you have posted here. I went to our GP’s & queues for 25 mins at reception to ask if I could make an appointment to speak to the manager but was told that was not possible so I too have forwarded it to my GP’s practice but as yet not had a response. ( which dosnt surprise me). After advice from another member I tried calling 119 again yesterday & this time got to speak to a very helpful lady who has arranged for a PCR & LFT’s to be delivered & they have arrived this morning. I guess I still need the response from practice manager about the code too. X

[Gigi71]

I have covid, tested positive on Monday, I had been sent a priority PCR test kit at Christmas, however I couldn’t register it on the Gov website as per the instruction with the test, they have changed the rules from the 1st April, I just had to register my LFT I had used in the morning. I received a text at night advising I will be contacted in the next 24 hours, someone called me from a local hospital at 8.30 am the next morning, asked the medication I was on that suppressed my immune system, asked the condition I had, RA and said I will hear from the Antibody Team, again within the next 24 hours. I received a call that afternoon, they went through all my Medications and it seems a couple interacted with the antiviral tablets, so an infusion was booked for the next morning. I had Sotrovimab. All went well. I haven’t been that bad but, have had headaches, worst at night and very tired. Day 6 and still testing positive. So grateful for the service offered. X

[Moomin8]

Great service!

[alton]

Hi I contacted my GP 're code and was asked to send an email requesting exactly what I wanted. I'm unsure of what I request ....the SNOMED code ( should they understand that?) Can you advise?

[Moomin8 in reply to alton]

Hi alton,

This is what I emailed to my GP surgery:

'I have been trying to arrange that I have a PCR test at home which would be sent (if needed) directly to a specific lab in order to immediately access treatments for Covid. I strongly feel that I should have received a letter along with this specific PCR test, some time ago, as I am clinically extremely vulnerable. I also had trouble getting my 3rd and 4th vaccine, initially. I have had 4 vaccines now, but had to really fight for it- which was very stressful. However, I still don't think I have the correct code on my medical records to initiate the letter and PCR ready, incase I need to access specific treatments for Covid. These treatments have to be accessed within 5 days of the first symptoms, otherwise the treatment is, apparently, ineffective.

I have asked my rheumatologist, who said that my GP should have initiated these two things. When I spoke to you, about it all - you didn't have the information to initiate these processes. I wasn't called for a 3rd or 4th vaccine by the surgery, when I needed it. I'm wondering if the correct code is on my medical records?'

I also attached the email which I received - I have put that in my initial post on here, plus these links:

digital.nhs.uk/dashboards/g...

opencodelists.org/codelist/...

opencodelists.org/codelist/...

The problem my GP has is that my Tocilizumab is not on my records; it can't be added to my GP records. Consequently, my GP has put a flag against my records to say that I am immunosuppressed.

[alton]

Thank you so much that is so helpful. I've an horrible feeling that's going to be the answer from my GP too! The system is not good ...or the the lack of it! I'll let you know the outcome.