I've got Covid and the NHS system fails to work

[Harvist]

I started showing symptoms Sunday. I took my first test early on Monday morning and the second two hours later. Both showed positive in less than 3 minutes/

Advice now is contact your GP but my surgery was closed for the day for a "digital upgrade." So I rang 111. Phone answered after 25 mins. Questions asked and a clinician phone call promised. That came almost 3 hours later.

I was told that I would be referred to my local clinical authority which was a completely separate organisation and to expect that the callback could take up to 24 hours. Monday came and went without a call.

Tuesday morning came and I rang 111 again to be told that I had to wait until the full 24 hours hasd passed. 3 hours later it had but still no callback.

I rang 111 again and this time they said thay had no way of checking where my requests were and they would need to start the process again! They did. 30 mins later another clinician rang, told me I should get the tretment as my CLL put me in the right group but I might not get a callback until the next "business day" and the health authority stopped working at 4pm!!!!

Later that afternoon a really lovely lady from Hampshire did ring, conformed what medication I was on and that paxlovid was being prescribed. This was about 4.20.

She told me that she would send the prescription to a pharmacy of my choice. I haven't used local pharmacies since the pandemic so she chose the nearest Boots to me. She also told me they were unlikely to have paxlovid in stock so it was up to me to ring the branch and ensure they ordered it that evening for collection the next day.

I tried, and tried, No-one answered the phone. Shortly before they closed my wife came home from work and rushed up to them. They confirmed they didn't have the drug and couln't get it for another 24 hours! They also confirmed that no-one answers the phone because they "haven't got enough staff" !!

They told her that our town centre Boots has 3 doses pf paxlovid in stock and that they were open until 7pm. My wife dutifully rushed into town only to discover that the info given her by one branch of Boots, the pharmach had shut at 6.

The only path left was to arrive in town this morning at opening time to ensure there was still some medication in stock. Incidentally we tried 2 other pharmacies (not Boots branches) and they said it would take them 48 hours to get paxlovid.

So I started my treament at 10 am this morning, the third or 4th day of infection.

The government has scrapped measures to protect the immunocompromised and it seems have scrapped the necessary support for treatment. I feel I wouldn't be on the treatment now If I hadn't got a partner who was able to dash around town for a solution. Anyone on their own or isolated would still be waiting.

[Newdawn Administrator]

Sorry to hear the service doesn’t appear to have improved since my ‘Covid Christmas of 2021’. I spent the entire Christmas trying to secure treatment after a positive reading on the 23rd. Eventually managed to get treatment (Sotrovimab) on the 26th but it was an uphill battle and I never yet managed to get through to 111.

Seems to be dependent on geographical areas too because others have had a much easier time.

Hopefully you’ll find you recover quickly and all is well. However, it’s clear the system is now clunky and disjointed for the immunocompromised 🙄

Having said that, the lack of pharmacy availability is a different concern.

Sadly, my experience of the NHS is jaded at the moment generally and for good reason. Not being able to access a paramedic or ambulance for up to 90 mins when my husband was having a heart attack earlier in the year really illustrates how bad things have become!

Newdawn

[Vlaminck in reply to Newdawn]

Shocking, your husband's experience, just shocking!

[mrsjsmith]

I am so sorry to hear you have had such a run around. There doesn’t seem to be any clear guidance anymore. Living on my own I have visions of me sitting on my mobile and home phone and iPad calling everyone. My CNS did say to call her if I caught covid. I am surprised that Boots are stocking Paxlovid and that it isn’t coming from a hospital pharmacy after checking your eligibility. When I was checking a possible contra to Ibrutinib in a Boots I had to spell it out because the pharmacist didn’t know what it was.

I hope now you have finally got it you respond quickly 🤞

Colette

PS decided to look up and one part of NHS say’s contact my local Integrated Care Board 🙄 good luck with that, and another part says GP, 111 or hospital consultant.

[Thursday45]

Why doesn’t any of this surprise me? My local pharmacy often doesn’t stock the medicines prescribed by my GP. It is disgraceful that you couldn’t get the Paxlovid within the recommended time scale. I thought they were meant to send it directly to you by post. Just shameful.

Hope you don’t suffer too much with Covid.

[RogerPinner]

I'm pleased you eventually got the drug. You don't say how you are feeling, hopefully not too bad, and soon much better.

I think when the govt talks about levelling up, it ignores the imbalance in health care across the country.

Living in London, having regular contact with and frequent trips to UCLH and the Royal Marsden, I know how lucky I am.

I wish you better soon.

Roger

[Sepsur]

I’ve often thought how fortunate I am to be on a trial because my trial team have taken control of any situation that has arisen over last 3-4 yrs

[Newdawn Administrator in reply to Sepsur]

I was on a clinical trial Sepsur and it didn’t make the slightest difference. The hospital team didn’t intervene or assist when I had Covid ☹️

Newdawn

[Sepsur in reply to Newdawn]

as we seem to repeat when talking about NHS treatment in England - it appears to be a post code lottery 😳😬

[Newdawn Administrator in reply to Sepsur]

True. My numbers never seem to come up! 🙄

Newdawn

[Michaeljohn50]

Sorry to hear about your problems. The incoherence and maybe incompetence of the processes in place is quite staggering. It took my local CMDU 4 days to deliver Paxlovid all of 13 miles and the "Use by" date expiration was 3 days after it arrived. Fortunately I had reached out to my wonderful Haematologist on the afternoon of post infection day 3, she prescribed Paxlovid, and my daughter , who was looking after me, did the two hour drive each way to collect it before the hospital pharmacy closed , Thank goodness for family! My wife was in hospital when she and I became infected with covid, she remained in a closed ward for a further week. Who needs this additional anxiety?

I hope that you are feeling better, Paxlovid was excellent for me.

Michael

[IWVC]

I feel that I may be on the same path as you. After my post on vaccines healthunlocked.com/cllsuppo... "Sod's Law, or some equivalent moved into overdrive, and I experienced a sore throat Tuesday evening to be confirmed with a COVID test on Wednesday! I have little faith in the admin side of the GP surgery, so phoned NHS 111. I expected a long wait, and one of the first recorded announcements said it would be so, but the next recording stated the delay was likely to be 3 minutes. This was after 4 minutes of "press number 1...etc" and warnings of delays. The person on 111 was efficient, although did not seem to be up-to-date on immune problems and covid, and processed me quickly. They said that they had notified my GP surgery and I should await a call to be fully assessed. I'm still waiting 24 hours later. It sounds as though I should try to contact GP directly but the phone system usually has two responses, 1) a long wait or 2) phone cut off immediately. I'll try this morning anyway.

[Fran57]

I’m so sorry to hear this… but not in the least bit surprised, sadly 😕

I’m dreading being in that situation with my husband (the one with CLL) because we don’t drive and buses/taxis can be a bit hit and miss here!

I sincerely hope you start to feel well and recover very quickly.

Fran 🤞🏻

[Rog69]

Very much the same for me. Contacted 111 mid afternoon last Saturday. Spoke to six people over the next 12 hours, including a phone call at 4.15am Sunday. Don't remember much about that, except they were passing my details to some where else. Finally Sunday afternoon it was agreed that I should get anti-virals, and a prescription was sent to my nearest chemist Tesco. I was told to phone before going to collect. Of course no answer. My wife went, and was told they hadn't got the drugs, and that it was unlikely to be available outside a hospital setting. I decided to phone another local chemist to be told they had it in stock. Finally got my anti-viral late Sunday. Now realised how lucky I was to find the drugs available, and that my wife could go and get them. How I would have managed if I was on my own I dread to think. I'm very much on the mend, but of course, my wife has covid now.

[bennevisplace]

In so many areas, don't we seem to have exchanged European Union standards for Soviet Union standards?

[Harvist in reply to bennevisplace]

So true! Hoops to jump though leading to ditches to get stuck in.

[Ghounds]

As I'm alone with no family or friends to help and a fair few other health problems this is one of my worst nightmares (and I have many).

I hope you feel much better very soon Harvist.

[Harvist in reply to Ghounds]

I am sorry to hear this. The only "good" news I can offer is that when I eventually did get the call from the appropriate health person she was incredibly thoughtful and kind. She spent time trying to work out the best pharmacy for me and gave the impression that if I couldn't access it she would offer an alternative. Not sure if that was me being hopeful but she seemed caring.

[Harvist]

An update. On second day of paxlovid and don't feel better but certainly no worse.

[Vlaminck]

Oh, my, what an ordeal! Glad you finally got your med and hopefully all will be well with you. Is everyone taking meds for Covid these days? I didn't when I had mild case, and have heard a couple negative reports from friends who did (unkind reactions).

[MickUK]

I have told this story before, but it is worth repeating. Last August, after 2 1/2 years of shielding, I took a chance and went on a trip to USA to include a 4 day cruise to the Bahamas.

My worst nightmare happened and I, my wife and 15 year old daughter caught COVID. We reported this to the medics and amazingly they told me that they had taken delivery of Paxlovid the week before.

I got an email from my hospital to confirm that I could take it and I took delivery of Paxlovid the next morning. I swear to this day that I got the treatment in the middle of the Atlantic ocean faster than I would have been able to get it back home in UK.

I think my son, who didn't get COVID got the worst of the deal, because we were confined to our cabins for the rest of the trip and he became our gofor - go for some chips, go for some drinks, go for some ice cream etc.

[Dawson21]

I feel compelled to share my experience this week. Slight symptoms on Monday night, progressed on Tuesday and a positive test on Weds morning. Contacted my CLL nurse who gave me a contact number which I rang and went through screening for eligibility, followed by a call from the duty Doctor about an hour later. After discussion determined that I needed Paxlovir which was sent by courier and arrived next day. I can't fault the service - in Sussex at least - but important to note that this was though Alliance for Better Care a GP Federation in Surrey and Sussex combining 47 GP Practices and 12 Primary Care networks. The way of the future perhaps. I'm a happy customer with only mild symptoms but comments on HL persuade me to take PX just in case!