Antivirals access in UK

[Hulot]

I have CLL and been on W and W for 9 years. I live in North Yorkshire. After 2.5 years avoiding Covid, I finally tested positive last Friday around 1pm, having had minor symptoms since last Tuesday (probably caught at wedding in Belgium the previous weekend where everyone had tested). I registered LFT result on NHS App and got text saying I might be eligible for antivirals and would be contacted within 24hrs - if not to contact GP or 111. I also contacted immediately my haematologist who asked the local CMDU team to contact me. GP also informed. I had an initial call (I think from local CMDU) Friday late afternoon assuring me a clinician would call to assess my eligibility for antivirals within 24 hours even though weekend coming up. No call was received and only number I could call to chase was 111. This is a tortuous process. Finally, on Sunday, after further calls over weekend to 111 and haematologist, we discovered the local CMDU was closed at weekends - crazy when time is of the essence for the antivirals to be effective. My haematologist was as shocked as I was. The 5 day window (I think it has to be from onset of symptoms) for getting antivirals had passed. My symptoms have fortunately only been mild so far (my haematologist thought because I’d had 5th vax 3 weeks ago) but if they had been worse I could have been in trouble. My experience has not inspired faith in the system which, in my local area at least, is sorely lacking. There needs to be more direct, speedy access to the antivirals through one’s haematologist or GP. My advice to others is to familiarise yourself with the situation/procedures in your area before you get it and then push at every stage, especially if over weekend. Time is of the essence.

[Newdawn Administrator]

Sorry to hear of your experience Hulot but glad to hear your symptoms seem to be subsiding now. Of course it could have been quite different and hazardous if you’d deteriorated! I had a similar situation in the U.K. because I was crazy enough to test positive the day before Christmas Eve. The whole system seemed to go into festive shut down and I spent the whole period trying to secure advice/assistance. Thankfully I didn’t deteriorate badly either and I managed to get an infusion of Sotrovimab on Boxing Day (26th Dec for non Brits).

It really shouldn’t be this difficult because as you say, time is of the essence.

Newdawn

[Pinkdark2018]

I, too, live in North Yorkshire and having had a conversation with my consultant last week I was aware that weekends cause a problem, I shall now add Friday to that. I am being treated out of the area but he told me he’d have to email the CMDU in North Yorkshire as that is my post code. The whole system is designed to make things difficult for us when we can least afford it to be.

[annmcgowan]

Thanks for the heads up about antivirals being transferred to GP’s. Unfortunately they too are closed at week ends. They need to think about weekend cover for us alongside giving us feedback about the prophylaxis evusheld which the government said they were investigating the efficicacy of on the omicron varient a few months ago. All has gone quiet on this front. Anyone aware of how this investigation is going?

Ann

[Newdawn Administrator in reply to annmcgowan]

I don’t think antivirals are being transferred to GP’s Ann. My understanding is they remain within the remit of the CMDU’s unless I’ve missed that change.

Newdawn

[Hulot in reply to Newdawn]

Thanks, Ann. And yes, you are right, Newdawn - I was told the current CMDU system is an ‘uncommissioned service’ and will probably change in the autumn and transfer to primary care. But we’re not there yet and I suppose it may even vary from one area to another. I will lobby my MP for better access along those lines - others may wish to do same.

[annmcgowan]

Sorry Hulot went of on one of my rants and forgot to say I hope you recover soon.Ann

[annmcgowan]

Thanks Newdawn I misread Hulot’s message, silly me, it must be the heat.😂😂😂

[retired46]

Sorry to hear it hasnt been a straight forward process. I am in Southampton UK.The letters from the government what we should and should not do together with information of anti covid treatment I found overwhelming and sometimes confusing and unnecessary.

The five day rule is so important when testing positive.

I had been on the Prosecco trial and spoke to my contact nurse early on about the anti covid treatment she advised me if ever I tested positive it was a straight forward procedure and to contact my "team" who would deal with it.

I tested positive late last Wednesday - emailed "my team" who replied within a few hours that I had been referred to the Covid Treatment Team who would phone me - this duly happened - Which resulted in a courier delivering My treatment Friday afternoon. It was prescribed through the dr that phoned me and the hospital pharmacy NOT the GP. My guess is if I had phoned my GP surgery they would not have had a clue.

If I had gone through the government advice I think I would still be waiting.

I think the hospital team that support us through our CLL journey is the most important thing and I am always so thankful for mine which I have had now since 2018 and I appreciate everyone of them.

I agree there has been too much beurocracy around the whole information , we should always find out our own info for ourselves and push to get what we know is needed.

I certainly think they are the best point of contact and I hope my contact team and consultant are not unique.

I do hope you are feeling ok, and wish you well.

[cartwheels]

Morning I too tested positive last Tuesday and like you had 5th jab only 2weeks before and had very mild symptoms . But I was contacted by the hospital 24 hours later where it was decided as my symptoms were mild not to give treatment and they even issued me a mobile number from the virtual covid ward to ring in case I did go downhill which was reassuring.

The system has faults but largely works being the huge monster the NHS is .

For me it's good to hear another story l about only have mild symptoms because of recent vaccine shows the Ben of having booster vaccines I myself was in two minds as if to have it ,glad I did now . Shame about the system failing for you but like me I'm sure they would have not treated you with only mild symptoms in any case . We have to remember these treatments can have adverse effects on us and should only be given when it' out weighs not having them .

Hope you are well on the mend now

[Mtk1]

I can only speak as I find, I tested positive on Saturday morning, rang my haematology unit who referred me to the hospital unit, Doctor from unit rang a couple of hours later and after lots of questions and a bit switching of my medications he informed me he was sending out paxlovid, this arrived by taxi at about 4pm. It seems some authorities are better than others, hope you recover fully Dave.

[Westie11-]

Hi like you I have been in W&W for 11 yrs and tested positive last week. I too received the same information but as I wasnt too ill waited till Monday morning to chase up. I did get a call from a NHS nurse clinician and after answering some questions I was told I didnt qualify for the treatment.That was according to her as I wasnt receiving radiotherapy or chemo. I can also say that I talked to GP and she didn't know what the rules were and would have to research. So now back to taking paracetamol and hoping it goes soon.

[CLLerinOz Administrator Volunteer in reply to Westie11-]

Hi Westie11,

I'm sorry you've contracted Covid-19 and that you've had trouble trying to access treatment. I hope the paracetamol is helping. I'm not sure if you've still enough time to access antiviral treatment but I thought I'd provide the following information in the hope that it could assist you or others reading this.

Here is the UK NHS document 'Treatments for coronavirus (COVID-19)' :

nhs.uk/conditions/coronavir...

In terms of who is eligible for treatment, that document refers to an independent Advisory Group Report commissioned by the Department of Health and Social Care. That report defines the groups of patients that are at the highest risk of serious illness from COVID-19 who would benefit from COVID-19 treatments in the UK. The list includes:

"Haematological diseases and recipients of haematological stem cell transplant (HSCT)

- allogeneic HSCT recipients in the last 12 months or active graft versus host disease (GVHD) regardless of time from transplant (including HSCT for non-malignant diseases)

- autologous HSCT recipients in the last 12 months (including HSCT for non-malignant diseases)

- individuals with haematological malignancies who have received CAR-T cell therapy in the last 24 months, or radiotherapy in the last 12 months

- individuals with haematological malignancies receiving systemic anti-cancer treatment (SACT) within the last 12 months

- all people who do not fit the criteria above, and are diagnosed with: . . .

-- chronic B-cell lymphoproliferative disorders (chronic lymphocytic leukaemia, follicular lymphoma) (my emphasis) . . . . "

"Defining the highest-risk clinical subgroups upon community infection with SARS-CoV-2 when considering the use of neutralising monoclonal antibodies (nMABs) and antiviral drugs: independent advisory group report" - gov.uk/government/publicati...

Hope you recover soon.

[CLLerinOz Administrator Volunteer in reply to CLLerinOz]

I've just realised that bennevisplace provided this and more information in a separate post: healthunlocked.com/cllsuppo....