it’s currently 08.30 in the morning and I have probably had the worst ordeal ever. I tested positive yesterday morning. As is the protocol I rang my Consultants Secretary, she arranged for the paperwork to West Yorks Healthcare (we live in North Yorkshire) Trust. She added to let them know as it was a new system and hit and miss. She rang me twice to ask if they had been in touch but I hadn’t so she chased to be told at 5pm, yes I am entitled to the Covid treatment because I am immune suppressed but no it was outside their area. My Hospital has stopped doing it.
I then rang the GP to be told “things have changed you’re not entitled anymore” yet my Consultant says I am. In desperation with symptoms getting worse I rang 111, they told me to go to Darlington Memorial Urgent Care and they had referred me. Arrived at Darlington at 7pm seen by a nurse who put me in a side room “to keep other safe” as she put it, telling me the wait time for the Dr was 3 hours. At midnight we asked what was going on and they had forgot us. Finally at 1am a Doctor appeared and said we have the treatment but it can’t be issued from Urgent Care I wasn’t poorly enough and had to be admitted to Intensive Care to get the treatment, told to come home and ring 119 at 9am. 119 aren’t in at a weekend and don’t deal with that anymore anyway. Came home exhausted.
At 0430am my symptoms were worsening and I felt really poorly, rang111 again and they said I must attend Northallerton Urgent Care. Got there 0545 to be told “what are you doing here, we don’t do any of that they shouldn’t have sent you it’s a step down from A&EI was seen by a Doctor who said my Oxygen levels were ok they couldn’t do any treatment but I should go to A&E at Middlesbrough (where my consultant is on Monday) but it’s a 5 hour wait.
We came home. So my last chance is to send in a Self Referral form, which I have done. So currently no or little chance of treatment trying to get by on Paracetamol.
Please, please everybody check what your protocol is if you get Covid. Things have changed so much for us immunesurpressed without us knowing, I wouldn’t want anybody to go though this.
Nick.
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Nick I am so very sorry and appalled at the level of service you received, or in your case didn’t receive. It’s hard enough coping with a chronic illness without having to deal with incompetence and poor communication between departments.
Hope you begin to turn the corner and start to feel a bit better very soon. It’s a scary situation as we move into Autumn and Winter.
When you feel better I wonder if your local paper would run an article on your experiences and PALS could be alerted.
I am so sorry you have been treated so poorly. I am in the US. I am on rituximab x 5 years now. I've had all the vaccines, Evushield, etc and just got over Covid for the 3rd time. I had influenza A as well. Please stay hydrated!! And rest! Best wishes.
Thanks Mrsszyb. Woke up this morning with really sore throat and the sniffles but that’s about it. I feel ok in myself so onwards and upwards. They won’t let us have Evusheild over here unless we pay crazy money so you would think anti virals would be the fall back but we have been forgotten in the UK. So sad but you just have to get on with it. Take care. Nick.
I’m so sorry for the way you’ve been treated. I am on 2g Mycophenolate for systemic sclerosis and Sjögren’s and dread this happening to me. So far I’ve avoided Covid somehow but feel it can’t be avoided for much longer now that no one is testing or caring. I’m in Scotland and as far as I know, the anti virals are still available to us but I haven’t a clue how to access them as I live just under a different healthboard to the one I’m seen and treated by.
Having read your post and with another month to wait until my vaccines - I’ll do some homework on this. Meanwhile I really hope you’ve turned a corner now and hope you’ll maybe copy and paste your experience to one of the Forgotten Lives team who are asking for positive and negative accounts - especially the latter - re access to anti virals.
Thanks Ted, woke up this morning with the throat from hell but otherwise not too bad. I have been told several times in the last couple of days I am entitled to Covid Treatments and I fit the criteria and yes they are still available but it looks like the switch South of the border is “only give it if they are in serious trouble rather than the mindset that used to be in place “let’s avoid serious trouble” which can only be down to cost cutting but costing more in the long run. But isn’t that typical NHS, waste money all over the place because we are not a profit making business. Sadly a lot of NHS staff are not only demoralised but couldn’t care less and couldn’t hold a job in a profit making business. I think the words of a hospital Porter at 21.40 on Friday night (when we hadn’t been seen at the hospital for nearly 4 hours) summed it up for me “if I can stretch this job out till 10 I’ll be going home” “somebody else can do all this crap” take care mate. Nick.
Yes it’s a strange anomaly that I go into hospital for many outpatient appointments and day-long monthly infusions and they test my temperature first and ask me if I have any cough, fever or sore throat, runny nose etc - yet I don’t get to ask them (nurses, porters etc) same. And they often tell me how bone tired and disengaged they are as HCPs so I leave feeling demoralised and uncared for as a chronically unwell person. Sadly compassion fatigue is a mutual thing in this context.
Being north of the border is a mixed blessing in terms of healthcare with rare diseases. I felt less self conscious wearing my FFP3 mask in London to see the scleroderma expert at Royal Free than I feel in my local university teaching hospital - where there’s not a mask to be seen anywhere. I now live in dread of further emergency admissions due to terrible recent experiences of front line emergency healthcare.
GP practices in Scotland are not responsible for or able to discuss eligibility for vaccines or anti virals which I think is good on some levels as it frees them up to focus on all the rest. But it does mean we go through to a central vaccine line now and no one really understands the pathways and how to apply the eligibility criteria in terms of appointments and availability or cancellations at local vaccine centres.
Also I tried to sign up to the new Stravinsky project re researching Covid risk for individuals within vulnerable population cohorts - having watched the webinar and heard the lead immunologist saying that they want to include all eligible people living anywhere in UK, no matter how remote. But I was passed to the nearest centre which is 2 hours drive or train away from me. And I’m guessing they will probably prioritise by postcode from the perspective of their own patient lists I imagine. I certainly haven’t heard anything thing yet.
This situation we all find ourselves in is ever changing according to to the vague ties and financial priorities of centralised politics so I’ve all but given up trying to keep up!
Hi OldTed the Scottish guidelines say contact the health board where you live. However in your case they may want to go via the health board who treats you. Though medicine records in Scotland are usually centralised and your local health board will probably be able to access your medicine record. See nhsinform.scot/illnesses-an... for phone numbers for the health boards. Good luck! I am just getting over Covid but never tested positive on LFT so couldn’t access antivirals. I am also on 2g Myco and am in Tayside. My healthy husband who gave me to only tested extremely faint positive.
Thankfully Covid isn’t the probable death sentence it was, even without antivirals and I am sure you like me feel if we do get through it without antivirals not being complacent the Sword of Damocles has shifted somewhat. Take care. Nick.
I think my vaccine cover has really helped though. I only had my 7th Covid vaccine in June, and I know from private antibody testing that I've been getting a very strong response to these since vaccine #3. So I was in the best place possible when Covid struck on 30th September, albeit probably a low viral load version. My 8th Covid vaccine is in early November and I will definitely be getting it. Despite every single Covid vaccine so far triggering a 3 month long debilitating neuro vasculitis flare, starting a week after. But the protection is too important.
Hi vivdunstan I:copy that. I had mine just over a week before I tested positive it was my ninth, also to factor in is that it is 5 months since my last Rituximab Infusion (I have my next one late November so possibly my immune system was recovering a little. We will never know, however the process of making an official complaint starts here. If anybody knows where to start please let me know. Nick.
So glad you are coping and now recovering from the COVID. I am slowly recovering, and now testing negative on a lateral flow test,after contracting it 3.5 weeks ago.
I was very lucky to be given paxlovid which I felt really helped me.
My other half, who has sarcoidosis and nodules in his lungs and is 65 years old was refused however!! It does seem a very hit and miss system (we are in London).
Can I ask you where you get your private antibody tests done? I want to do one to see if I have made a good antibody response. I see that both superdrug and Lloyds pharmacy do them but don't know if some tests/providers are better than others.
Hi Hoofprints. My antibody test was arranged by my consultant because she wanted to know if I could take part in a trial. And there has been a major development this morning. NHS called me at 10am saying somebody would contact me before 1430 to arrange Antivirals being delivered. I asked who had initiated it and the said my GP. Gobsmacked!
I get mine from Medichecks, who I find reliable, but they are a bit more expensive. You supply the blood sample by fingerprick method into a vial, which you then return in the post.
Yes that’s so strange isn’t it? I keep hearing healthcare staff saying to each other that they feel lousy but have tested negative so🤷🏼♀️. Perhaps the tests we were sent are not picking up the new strain?
I’m in NE Fife but attend Ninewells for 99% of my care so I’d phone the rheumy helpdesk first but not sure what I’d do if out of hours as generally get sent to St Andrews or even Glenrothes or Kirkcaldy for out of hours non emergency stuff. Miles away!
Tricky really as I really wouldn’t want to take oral antiviral Paxlovid with my 24/7 nausea from paralysed gut so I may just have to take my chances.
I can’t get vaccines until 2nd November despite trying several times. It worries me being under 2 healthboards because NHS Fife don’t have access to my Tayside hospital records. I notice that the Scottish Labour leader was saying they would merge healthboards across Scotland to reduce the admin costs and better streamline things if they get in here. I guess this would make a lot of sense in some ways but I’m already fretting that Fife would merge with Lothian rather than Tayside!
Glad you’re both seemingly out of the woods despite no access to anti virals.
If you're in NE Fife (hi! I used to live in St A and Cupar, also treated at Ninewells) but seen at Ninewells I'd personally phone the NHS Tayside contact if you get Covid. The rheumy contact may not be able to help fast enough, but you have a direct phone number to call for antivirals at NHS Tayside. Ditto for Fife, but I'd try Tayside first.
Yes I did research this when hubby got Covid in summer 22 . He was only really unwell for a few days but tested very positive for 14 days! We think he got high viral load from vet he was close to with a very sick dog despite his mask. Amazingly I didn’t catch it but was able to be outside most of the time in heatwave. I was given the Fife and Tayside Covid numbers and told that it was Tayside I should call but this was 18 months ago so feel it might have changed now - either the number or the rules. Will do some research now I’ve read this post.
I lost a Scottish friend with scleroderma to Covid a year ago so am very aware of risks we carry although she was on Mycophenolate and Rituximab.
Hi again OldTed60, it definitely has changed I like your hubby caught Covid in June 22, and we we touring the Inner Hebrides, fortunately we were in Cambletown ready to get the ferry to Islay when I tested positive. I rang the Consultant Secretary who completed the paperwork, by Midday a Doctor from NHS England rang me to assess me, she then advised me she was issuing a prescription for Sotrovimab (not antiviral but Monoclonal Antibody) and the Dr told me at 0900 in the Morning my Hospital would be calling. 0900 the following day the hospital rang and said can you come in at 12 for a Covid Treatment Infusion, it’s ward 3 and parking spaces are available for patients. Got there, did the business, Covid didn’t even break. 14 days later tested negative……simples! I was told ward 3 was closed for Covid Treatments as a cost cutting. So there we have it circumstances identical, outcome totally the opposite. Nick
Yes this is just what your post and replies have made me think. This is why I’ve so far not agreed to Rituximab and just stick to Mycophenolate. I come off it on day of vaccines and stay off it for a week having read up a few years back on this.
I get monthly infusions of Iloprost for my Raynaud’s and my veins are terrible so the thought of additional infusions for Rituximab is too daunting - they can never find a vein and the portacath I had immediately got infected but went through a fiasco trying to get anyone to remove it - ended up in hospital for ten days over the May bank holiday on IV Vancomycin.
Now they won’t consider any more surgical interventions unless I’m rushed in as emergency again. Yet it was actually a problem of their making because I told radiologist and every nurse that the newly inserted portacth was becoming infected even before they finally took off the bandage! You know how it is I’m sure - we know our own body’s better than anyone and I bleed excessively and tissue and haematoma at a blink. Many experiences of A&E and other wards and not being taken seriously enough until almost too late have have led me to conclude that I’m my own best clinician most of the time.
And on that note - I’m so pleased you’re feeling you’ve turned a corner now despite the hopeless lack of NHS care you’ve experienced this time round.
Own best clinician. Yes sometimes we are. We know our bodies and conditions v weigh up treatment and risks,. When we are not getting help fast enough like your poor veins and infection. I had a similar situation in 2022 re dental , salivary and lung . I think it has given me more confidence in what I will and will not accept. Plus changing my dentist who gaslighted me for too many years. take care.
Yes - I’m so pleased that you followed your instincts and changed dentists. I think one of the U.K -wide disasters of the pandemic was the way that NHS dentistry almost stopped.
My former neighbour’s teenage son very nearly died of sepsis when he was refused root canal or extraction for an infected root and ended up in ICU isolation room (with Covid) in a coma. He only very narrowly survived thanks to a maxilo facial surgeon - but has permanent scarring from jaw to stomach and has lost use of his vocal cords. His parents can congratulate themselves on refusing to be gaslit with endless courses of antibiotics thrown at him. This was Covid policy, not the dentists, in his case. But if he’d died it likely wouldn’t have counted as a Covid related death - even though it definitely would have been indirectly.
I haven’t yet followed up on anti viral treatments because I’m sated with chasing just now. I get my next vaccines on 2nd and have postponed my infusion day by a week - plan to stop Mycophenolate for a week from vaccine day as I usually do. Professor at Royal Free, London, said I was ahead of the curve as they now advise all their patients to do this. But I’m a pushy patient so I pinned down a rheumy registrar on best chance of vaccines working in 2021 and he reluctantly whispered this was what he would do! X
I love how you are now on such a better path and your care has much improved. Still I know how much hard work you put into this and still do. Not to mention suffering the symptoms then and now. My Dental was dire and ended up with a fantastic Max Fax who I owe so much too. Sad to say not in the area where I live and ended up travelling during Covid.
Your former neighbour is just another shocking example of what can happen. Plus how recording is skewed and has gone on long before Covid. Awful to go through at that age poor boy.
Still OldTed onwards we go and hopefully stay as well as we can. xx
Aww thanks dear Dottie - yes I am a great believer in the power of having a definitive diagnosis for improved mental wellbeing - whatever the prognosis. Once we know something’s very wrong we need to know what it is. The endless waiting and uncertainty is hellish isn’t it?
The people who work in the NHS are often absolute stars of course - but by heck it’s a great organisation for covering its tracks with lies dredged up for short term expedience or political convenience.
Hi OldTed60, woke this morning after a good nights sleep, just my throat really, my head is fairly clear no aches and pains so I think probably on my way out of hell. By the way the self triage form I sent off on Friday…….nothing! Nick
I was in the first wave of people to get Autumn vaccine. So when my Covid hit saw this hepled my recovery one it began to kick in. Mind did I pick it up at vaccine centre ? Very ill for a while. I reposted to Nhs for antivirals and no one called back. No joined up care plan in the NHS anywhere. All this info really helps. Take care.
I have not even been offered a covid jab although my condition allowed me to have the Spring booster, free test kits and the offer of antiviral then. I think now everything is being run regionally.
Hi SitraitedCaracara, it’s obvious she got it wrong and the Receptionist felt bad you could tell, she even called back with some web links that show I AM entitled and how to self triage so it’s not her fault but I am reporting the GP for negligence and changing practices. I have had very little support from the practice during Covid, my Consultant has gone out of her way to arrange Covid Jabs at the hospital, the Practice had me doing a140 mile round trip to get my second jab rather than issue a letter of authorisation locally. They are just totally unhelpful. Nobody likes talking to the office team, they are just rude and patronising and proper employers wouldn’t stand for it. Just hope this is as bad as it gets Covid wise. Take care. Nick.
As you are receiving treatment with Rituximab you are in a high risk group and need one if the prophylactic Covid treatments. As you are not hypoxic atm then you are ELIGIBLE to have “outpatient” treatment with the oral antiviral called Paxlovid started within 5 days of start of symptoms. (Rather than intravenous antibody Sotrovimab in ITU). It would seem that the only doctor that understands this is your consultant. Maybe your consultant’s secretary could get a prescription from the consultant on Monday. There are drug interactions so give a list of medications that you are taking.
One thing I noticed from your harrowing and depressing account of NHS incompetence was the language used at the GP surgery. Their use of the phrase “you are not entitled” rather than ”you are not eligible” for treatment subtlety reveals their attitude that patients are rather a nuisance that are to be fobbed off rather than helped.
In Collins English Dictionary “the difference between eligible and entitled is that the eligible patient is suitable; meeting the conditions; worthy of being chosen; allowed to do something. While the entitled patient is convinced of one's own righteousness, justifiability of one's actions or right to have something, especially wrongly so; demanding and pretentious. “
Well said Richard. Yes the Consultant secretary made a point of saying to us “you must ring us Monday to let us know what’s happened so I will be on the blower in the morning. Nick.
That’s shocking. I hope you don’t get any worse and start to feel better soon. My email from NHS said that GP should sort but obviously yours is incompetent. Im still part of the trial into Sotrovimab as a preventative treatment so I’m hoping they would help if no one else would. Take care.
Hi Sheole it’s for peace of mind if nothing else, if you have a good GP practice though you may find it moves things a lot more smoothly. If you havnt then you need to find out. Thanks again Nick
So sorry to hear that. I hope your consultant can sort it out. Your GP is negligent. I hope you feel better soon. I have been ill with Covid for 8 days but never tested positive on LFT so couldn’t access antivirals. My healthy husband who gave me it only ever tested extremely faint positive. In our case I think we had a very low viral load and have been very lucky. I hope you have as smooth a ride as possible.
Hi vivdunstan, I think I will see it through now to build up some of my own antibodies, if I do take a turn for the worse than if offered I will have it. Thanks again. Nick.
Well thanks to everybody for all your kind words and responses. I think my post should be retitled “DONT TEST POSITIVE ON A FRIDAY” yesterday at 10am I got a phone call from NHS England saying Anti Virals were on their way, a Dr would call by 2.30 and arrange delivery. I asked who had ordered them and they said my GP, what a turnaround! So today just within the 5 day deadline for the drugs they are arriving, the sad or good thing is I feel quite ok now. It’s been the strangest birthday ever. Nick.
Hi Main1234, I was tempted to see it through without them but thought it would be right to start them as it’s still only 5 days. It’s a difficult one but I thought just use them. Nick.
Hope they helped and you’re fully ok the mend now Nick? I was thinking that you might have gathered some extra antibodies in those first five days so hopefully a double bonus of the delay? My friend got Paxlovid last year on day 1 of testing positive but ended up with rebound Covid much worse than first time. She feels she started the antiviral too soon with hindsight.
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Advice on prevention of pneumonia having recently lost our father (wegeners) 
