I will never get covid treatment

[anapurna]

Just been turned down for a 2nd time by the Lister Hospital CMDU in Herts. Today is day 4. Apparently I don’t meet the criteria. Am going mad knowing I’m entitled and do meet the published criteria. Mentally I’m all over the place. Can people please tell me if those few of you who never got the treatment if they got over covid alright?

[cllady01 Former Volunteer]

I do not know if the linked article below has been shared by all in UK and on this site.

I am in U.S., but I hear your plaint for help and hope this particular article might be of help for you. I suggest you read it very carefully for what might help you word your plea to those who are said to be the people to whom you address your concerns.

Print out the lined article to show to your GP or ANYONE with home you might be able to get to see. It is DATED FEBRUARY 2022 and is to be updated APRIL 1.

gov.uk/government/publicati...

[Psmithuk]

This is appalling, but do follow what Newdawn has suggested earlier - ask for all the details of who you are speaking to, tell them you are going to make a formal complaint, and ask to speak to their superior. I’m sure it’s the last thing you feel like doing, but for your own sake, gird your loins and have another go.Good luck, Chrisx

[cllady01 Former Volunteer]

NOTE At the very bottom of the article I linked, there is a notice that instructions for some UK countries are different---those names are highlighted so can be linked on to see further information IF you live in one of those countries.

[Newdawn Administrator]

It looks very much as if you’re not on the CEV (clinically extremely vulnerable list) from your previous postings anapurna as you didn’t receive the letter or presumably the priority PCR test in the post? Sadly this means you’ve been wrongly excluded and without the appropriate coding, the CMDU wouldn’t have been promoted to contact you for treatment once you tested positive. You must take this up with your GP surgery.

The important thing is how you’re now feeling. Many CLL’ers have weathered Covid extremely well without therapeutics so please don’t be imagining the worse. Stress will be exacerbating your symptoms (it did with me).

This system has been messy and bungled to be honest and I’m sorry you’re found yourself a victim of this mess! ☹️

This post explains;

healthunlocked.com/cllsuppo...

Newdawn

[anapurna in reply to Newdawn]

Thanks NewDawn. You could be right but I did get the priority PCR eventually and the letter by email. Anyway the CMDU trashed the approach made by my haematologist on my behalf and they said I’d said I was feeling better (day1) and all kinds of other factors made me ineligible explained in length (no they weren’t) before she put the phone down on me - twice! So good persons of Hertfordshire - I’d be amazed if any of you get the treatment! Certainly don’t expect theCMDU to send any medication out to you any time soon! I will make a complaint but I can see they will be happy to defend their actions. Will do my best to instruct my ailing immune system to do its best and get me well soon!

[RZ8983DV in reply to anapurna]

I'm a bit worried. I an also from Herts but have so far managed to keep away from COVID but am now doing more risky things like international travel. My GP said I was ineligible for the 4th vaccination but my haematology team overruled them

[anapurna in reply to RZ8983DV]

I hope you never contract Covid. I shielded for over 2 years and more recently had the comfort of knowing I would get antiviral treatment to prevent a worsening experience and hospitalisation. Just hope you don’t live in North and East Herts! And maybe do a PCR test as well as although we’re not told this it just might be relevant.

[RZ8983DV in reply to anapurna]

I am in W Herts. Also on watch and wait. I haven't been shielding since , maybe September of last year but have until now severely restricted my activities and not gone into enclosed spaces with crowds and people I don't know. Given up the gym and order practically everything on line. Avoided buses and gone everywhere on foot or by car. Eventually received the PCR test kit but it hasn't been used yet

[anapurna in reply to RZ8983DV]

My advice is to use the PCR test if you ever get symptoms as this might help. My surgery has written to the CMDU to ask for specific reasons why I have been turned down. Also sending a complaint to the CEO.

[RZ8983DV in reply to anapurna]

I hope I don't have to but I will use the PCR test and hope I can get the monoclonal antibodies in time.

[Walkingtall62 in reply to anapurna]

Heck. So did you use the priority PCR test and post it back, to receive the positive result? Worrying

[anapurna in reply to Walkingtall62]

No I didn’t because recent government guidelines say. LFT is sufficient. The nurse Ratchet at the CMDU never once mentioned this or showed any nurse type empathy and advice. She lied that I’d said I’m feeling better - as if! And stated that this made me ineligible along with the fact that I am on active monitoring. She ignored the further written recommendations by three GPs and my haematologist and pretended to have reviewed my requests with their pharmacist. I will be making an official complaint when I feel better and will try and concentrate on dealing with the virus unaided.

[Walkingtall62 in reply to anapurna]

Hi, so without being rude, it appears you may be using two different systems through your own choice. Yes, sometimes the LFT test is enough, but not always, but that is for the general public, not necessarily for people who are immunocompromised. After testing positive with the LFT, I believe the only way to receive the treatment you need and are desperately searching for, would be to send the emergency PCR test off. This is the ‘only’ test in my opinion that triggers off the responses you are looking for. This is why we fought to have this test in our homes. Sadly it appears you are now out of your five days, but maybe next time try using the PCR test you were sent. It would have saved so much time and heartache for all concerned. Meanwhile I do hope you recover well. Take care

[bennevisplace in reply to anapurna]

How maddening. Do follow up, for yourself and on behalf of others.

Ineligible? Rubbish. Do you have a copy of the guidelines to append to your complaint?

All in good time. Best wishes for your recovery.

[Newdawn Administrator in reply to anapurna]

When did nurses start overruling the clinical recommendations of Consultant Haematologists and GP’s?The assessment to give me an infusion of Sotrovimab was made by a Consultant in Infectious Diseases.

Newdawn

[anapurna in reply to Newdawn]

Yes quite dreadful - my nurse practitioner said ‘oh but they’re the experts’ and I said that the CMDU staff nurse on the phone doesn’t know me. She’s never met me. My haematologist knows all about me. Johnson’s idea is that only CMDU’s can prescribe these drugs.

[RosettaClapp in reply to anapurna]

the right we have is to be considered for treatment not to be treated automatically sdly

[bennevisplace in reply to RosettaClapp]

True, but as the patient has been put forward for treatment by her doctor, the decision not to treat must be explained by the decision maker.

In this case the explanation is spurious: that the patient is ineligible because her CLL is untreated. This decision is contrary to NHS guidelines and the decision maker should be sanctioned, regardless of the medical outcome, to avoid putting other patients at unwarranted risk.

[anapurna in reply to bennevisplace]

Exactly so. My surgery and the CCG are asking just that.

[scarletnoir]

Just seen this - pretty shocking - I hope you get through it OK.

I was missed off the 'list' originally - never got told to shield or any of that, but more or less did anyway... when it came to getting a fourth vaccine (a booster for us with CLL), I was initially turned down by the local health board, but they did in fairness pass it up the chain of command and reversed their decision when it got to someone competent.

Just goes to show how these things can play out.

[thebigdipper]

I tested positive for Covid by lateral flow test about 10 days ago and (after the initial mistake by NHS England) I am on the ECV list and do have a letter and a priority PCR test kit (still unused).

My experience was that all I needed to do to get access to Paxlovid was to tell them that my symptoms were getting worse, not static or getting better. So - truthfully - I had a sore throat and mild headache on the Saturday afternoon. I tested positive at 6am on the Sunday morning. At 9am I was speaking to the on-duty registrar at the Haematology ward in the hospital where I was treated. By 10am, I was talking to a doctor (in another hospital nearby, but the same trust) who was assessing me as a candidate for treatment, I was able to tell him I had an increasing temperature and my heart rate was very high. That was all he needed to hear to agree to provide a course of treatment.

By 6pm that evening I was taking my first dose. The symptoms were never as bad as the heavy cold I had before Christmas - although the fact it was Covid made me anxious about the outcome. Within 48 hours I was feeling well (but tired). On Saturday (my day 8) I had my second negative LFT test. I'm feeling fine now.

None of this is going to help anapurna, but maybe someone else can benefit. As long as this is true, make sure they appreciate your symptoms are worsening.

[Walkingtall62 in reply to thebigdipper]

Hi, so am rather perplexed. You were very lucky to get the help you needed. But why oh why did you not send off the PCR emergency test, that we have fought so long and hard to get, and you even have it. How does the government analyse the useage of this system, if we now are not using it? Meanwhile I wish you a good recovery. Take care

[thebigdipper in reply to Walkingtall62]

Because the regulations have already changed in England since they started sending out those PCR tests, and you don't need the PCR test if you have a positive LFT test. It just slows down the process of getting help in the first 5 days of illness. But you do need to report the test result via the NHS app or the website, which I do every time I take an LFT - whatever the result is.

[Splash24]

I am just finishing up with Covid, bad chills one night, that was about the extent, vitamin D level is 150nmol/l. Good Luck