Covid - Beware Getting Treatment - Don’t Test Positive on a Friday - Some Answers

[Investigator1]

Well I said I would update you all regarding the ordeal I had had regarding my previous posts on this subject. Don’t want to bore you all but some may be interested in what I have managed to find out. I laid out to the NHS what I needed answers to and what they were doing about it to prevent it happening again, so after a detailed discussion with my Consultant yesterday she has gone over and above getting me some answers. Here are the questions I asked and the answers my Consultant gave me, bearing in mind the GP, Hospital and NHS England are yet to formally respond.

1/ Why is the referral system used by my Consultant not over my geographic area

Answer - When the system changed in March the triage system didn’t account for 3 postcode areas so therefore when my Consultant Secretary emailed the paperwork to NHS West Yorkshire they referred it back to my GP.

Action taken - It’s gone to Board level at the hospital but nothing has been done yet so the same state of affairs apply.

2/ Why did my GP report “that process has stopped” and then after the referral came back to her 3 days later change her mind.

Answer - The Receptionist my wife spoke to possibly didn’t understand the term “Clinically Extremely Vulnerable and therefore didn’t make this point when speaking to the GP. Only when the referral arrived from NHS West Yorkshire (see above) did the GP realise the full story and hence arranged NHS England to Contact me re Anti Virals

Action taken - Nothing , not even any briefing or training. I have been told “it’s just one of those things”

3/ Why did Darlington Memorial Hospital keep me for 7 hours and then lie to me with no attempt to issue a prescription when they admitted I was eligible.

Answer - The Doctor I saw was highly overworked and stressed and his priority was to clear a backlog of patients that needed urgent attention, I was not a priority and he had to make a decision. Regarding lying to me he denies that conversation took place.

Action Taken - Nothing

4/ Why do 111 keep sending me to Hospital when they don’t know anything about the treatment and it’s availability.

Answer - Best not call 111, they refer you to hospital because that’s what they are told to do if their system does not propose action, it simply isn’t set up for non medically trained staff regarding CEV People with Covid

Action Taken - Nothings - It’s the way it is, I was told.

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So bearing in mind I have had some limited success in finding out why the process failed and taking into account I am still awaiting some responses at least I have a reasonable idea why things went wrong. However as far as stopping this happening again then it’s set up for another fall. I did find out via a another source that another CEV individual from a different postcode tested positive a week prior to me and wasn’t as lucky because he didn’t get the treatment and had to be admitted into hospital where he received treatment as he was “in a bad way”.

I am now giving my poor head a rest because I have been “Banging it Against a Wall” for 2 weeks so let’s see if anything else comes my way.

Take care all.

[Grizzly-bear]

Thanks for the update and persevering. I’ve still been super careful and this is making me want to avoid covid like the plague (which it still kind of is). But it’s also almost impossible to avoid totally and it’s horrifying that they still aren’t taking our health seriously. We have teams of consultants keeping us alive with expensive treatments like rituximab but they’re willing to risk our lives over a few minute decision to not issue a cheap antiviral.

Appreciate you updating us.

[Investigator1 in reply to Grizzly-bear]

Thanks Grizzly your a good un!

[Main1234]

thank you for your update, still breathtaking incompetence.

[Investigator1 in reply to Main1234]

Yes absolutely! You couldn’t get it more wrong if you tried. I think the crux of things and this is only my opinion is that the NHS years ago was designed to be operated by conscientious professional people that really cared about making a difference, that has diluted now.

Take for example that Dr who blatantly lied to me to get rid. He wants a 35% pay rise!

[sunshineday]

Hi Investigator, so sorry to hear about your runaround by the NHS and thank you for giving this update. I was a complaints manager in the NHS for 15 years and part of that role was complaints training for all staff. It's so important for staff to take ownership of any concerns raised by patients or carers and to follow it through. All replies went through the Chief Executive and if necessary systems changed, as often it is systems that cause problems, as seems to have happened in your case quite a bit. I do hope that you get more positive responses from the others you are awaiting a reply from, and fingers crossed they all have genuinely learned lessons from your complaints and make relevant changes and improvements and not just pay lip service!

[Mooka]

Thank goodness for your consultant . Are you able to contact your consultant via specialist nurses or secretary should you be in this situation again? My lovely consultant has told me in the past if I have trouble getting treatment to let them know and they will make sure I get it. Thankfully I’ve yet to put that to the test. It’s pretty awful that you haven’t had replies from the rest. They think you will go away if they ignore you. Grizzly-bear makes a good point about the costly treatment that we all receive and then no one can make a decision when needed.

[Investigator1 in reply to Mooka]

Hi Mooka, yes fortunately I can contact my Consultant via her Secretary who is also very good, on the day I tested positive both of them did everything they could but the Postcode issue meant our area wasn’t on the system. My Consultant has stressed to me more then once they are the first point of contact and not the GP Practice which are hopeless. .Nick.

[Mooka]

That’s interesting for me. My consultant is 75 miles away! There’s really no joined up writing. Absolutely ridiculous.

[Investigator1 in reply to Mooka]

I think Mooka it’s all about what kind of GP/Consultant you have, if I have learnt anything since I was diagnosed is if GPs and Consultants really want to get something done they can move mountains. As far as NHS remote help like 111/119 I think we can forget them now unless it’s not Covid related or help booking a jab respectively. We only mattered when we were dropping like flies with Covid because we were using valuable NHS resources and finance by needing extra care, now it because it’s deemed “less harmful’ we have been dropped. It would be nice to think they did all the extra initially because they cared but I think the episode with Evusheild battered that.

[alybill in reply to Investigator1]

I have EPGA and when the shingle injection was first introduced it was for over 80 year old only. I had a long talk with my practice nurse and she agreed I was also at great risk by this time as I had suffered two bouts of shingles. I had come in contact with children who had chickenpox and I was given acyclovir. For the second infection i given immunoglobulin obtained from hospital and a large volume. I was recently invited for “a shingle vaccine” I spoke to a practice nurse (PN)/informed that I had already had the vaccine and it should be in my notes, she checked and it was not in the “right place” and she told me that I didn’t need the jab as you only have to have one in your lifetime. The PN couldn’t work out why the system never worked for me, funny that how things are different for us Churggies and we have to constantly on the ball. I have had 8 Covid vaccines and the usual yearly flu as well as 3 monthly B12 and if I can give up one other jab then I’m happy to do so.

Keep well and safe Vasculitis sufferers.