Just a quick one, isn’t it strange that all liver appointments are canceled due to covid and for a virus that 99.7 percent of people will be fine with, I just thank my lucky stars that I hadn’t been waiting on the transplant list last year in February rather than on it and receiving my new liver in March 2019 like I did, as the probability that I wouldn’t be here now would of been extremely high. Haven’t been to a clinic now In over twelve months, and I’m afraid to say it’s all down to the “disproportionate” action our government has caused
(Yes admin I’ve mentioned covid19 and the government in one post before you mention anything)
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Rockefeller20
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I don't know how each individual Transplant Unit operates, I attend SLTU in Edinburgh. Like you I had my transplant in 2019, and during Covid-19 2020 none of my 1/4ly appointments were cancelled and I have already received my next appointment. I did see a report on the news last week from the London Free Royal and they mentioned liver transplants were on hold due to this new wave of Covid-19 and lack of ICU beds. Are you attending your local GP for your blood tests? I had to get an extra couple of tests after my meds were adjusted and to save traveling to Edinburgh my GP did them.
Good point well made but we do have a hundred thousand deaths and it'll be more like 150000 before we're done. If the gov had made more proportionate action earlier we could be seeing a different situation. I've just had my first Az jab and thankful for it- let's hope we're on our way out of this so that everyone starts getting the right treatment soon.
I'm stage 4 Liver Disease and haven't seen any Consultant in all of the 9 months from diagnosis, I have had scans, bloods varices banded but no Consultant, x
Good luck with it Tia-haven't seen my GP in 18 months-I'm still alive 😀. I'll get around to chasing it up in the Autumn. The NHS has more pressing concerns than mine at present
I don't have diagnosed liver disease Tia so don't think the patient charter comes into it. It's pretty borderline -I have some mild symptoms so I just try and avoid alcohol and get on with it. All the best K
I have to say that the care my husband has received 2019 and 2020 so far has been amazing. Since the first lockdown my husbands condition deteriorated rapidly, resulting in a massive haemorrhage in September. From that point onwards, we have felt confident that he has had top notch care - assessed at Leeds, operated on several times, blood tests every fortnight, scans etc etc. The only difficulty for us has been trying to sheild with a teenage family and the fact that I can't always attend all appointments and hospital visits with him as I did previously. Our experience has been that when you really need NHS, they do their very best to be there for you! I hope this has been the same for everyone else out there!
Yep the QE is closed for gallbladder too and I sit here in pain every day. Yet someone we know is having his knee replaced 🤷🏻♀️🤦🏻♀️
Ok, i wasn't going to, but you dangled the big thick juicy bait on the hook and i've bitten.
Its not strange at all, in my view it was a sensible precaution. At the time, the known death rate was around 1 in 6 to 1 in 10 depending where you were and the only treatment was the hope that your own body's immune system would be capable of fighting it off. It was blindingly obvious that you couldn't carry on putting people at risk of being exposed to it. Not just in the hospital, but in everyday life. Not sure why your appointments would have been cancelled though. Most have been done over the phone, with those that have needed to be seen still being seen. I know mine were switched to telephone appointments, but i still to go and get bloods done at my GP and then later at the hospital.
Ok, now lets have a bit of fun with the statistics to try and answer your other point about proportionality.
Clearly in the early days it was difficult to get a good grip on number of infections, but now we have a good protocal for testing people that's not as much of an issue. We can therefore play wth the numbers to try and get a potential idea what could have happened had we not imposed restrictions. So lets have some fun.
There was that common social media argument about the 99.7% survival rate. I have no idea how they worked that out, but when you compare actual data it is obvious to see that is just a nonsense.
So lets stick to actual figures that are published and we know to be reasonably representative. Lets take recent numbers to gain an actual measured death rate compared to infection. At its peak in January some 68,000 cases per day were being reported along with 1,900 deaths. So lets use that as our proxy to keep it simple. 1,900 deaths in 68,000 cases gives a death rate of around 2.8%. At the present time 2.8% of people who catch covid die from it. So roughly 1.8m people in the uk, based on current rates, could die from Covid.
Assuming our daily rate of infection stays at a peak of 68,000. It would take 3 years for the entire uk population to be infected. However, we also know, that as more people get infected the rate of spread actually quickens as more people are able to pass the virus on to others. As a result, its not inconceivable that everyone in the uk could have been infected within a 12 month period. Remember in the early days the R rate was between 2 and 2.5. Every person catching it could have passed it on to 2 to 3 others instead of just 1 other. So, basically, within 1 year, some 1.8m could have died from Covid, based on current death rates. That's the equivalent of 5000 jumbo jets falling out of the sky! Its also 3x greater than the total number of deaths recorded from all causes in the uk in any normal year.
If the government had data that showed 5000 jumbo jets could fall out of the sky, do you think they should let people fly on them?
However, there is a caveat to all that math. What the the restrictions bought was time. Time to experiment with treatments, time to develop a vaccine, time to spread the load on health services so the care needed to look after covid patients never exceeded capacity. Without restriction, that time wouldn't have been there. Health services would have been overwhelmed. Treatments would not have been as far advanced. Without restrictions, it is clear that the potential for the number of deaths to have been far in excess of that set out above. Instead of a potential 1.8m casualties, what could it have been? Those early estimates of 3m+ may not have been too wildly inaccurate.
Fortunately, we did have restrictions in place, so we haven't seen those truly exponential growths that could have occurred. We saw them start and acted upon them, albeit i would agree, possibly a little late. As a result, instead of a potential 1.8m people dieing from covid last year, only 110,000 so far have.
Do we still feel the actions are disprortionate?
(Blue touch paper lit. Now to stand back and watch the fireworks😂😂😂 )
Additionally if you take a case like london it's probable that about 10% of the population has been infected at some point and a third of those asymptomatic so that's roughly 600000 cases a lot of them unreported- and many of them in the Bame community hence the horribly high death rate.
Also need to think about what if they just let covid rip through hospitals then alot of docs/nurses would have to stay home ill which would cripple the NHS day to day life saving treatment& operations like cancer and heart disease etc etc.
If anything the restrictions haven't been tight enough.
On top of all that the liver appointment are not cancelled at all. I had a fibro scan last December on the NHS.
Just found your reply and took the bullet points but this reply hasn’t aged well
I’ve still had all my liver appointments, on time too, every 6 months. Just over the phone rather than having to sit in a crowded hospital outpatients with everyone else, much easier.
I think you may be (deliberately) missing the point about cancellation of post transplant appointments (to be provocative) because your immunosuppressants/anti-rejection meds put you at high risk of not being able to cope with the Covid-19 virus. When everyone is being told to not go out particularly those that are vulnerable, why would the hospital put you at risk by asking you to visit them if they can check your situation over the phone?
As it happens I attend the RFH and they were overrun with Covid patients as can be fully appreciated by watching the BBC programme Hospital (probably still available on iPlayer). I was happy not to go to the hospital. Fortunately, I'm not having any issues that required a face-to-face, so had no reason to complain about not seeing my exceptional consultant.
When I was admitted to hospital November 2020 I did not have COVID due to lack of beds they put me in a COVID bay where by I contracted COVID on top of an upper GI Bleed , I already was working from home for the NHS prior to admission as a came under the umbrella of extremely vunerable due to medical conditions, We now are seeing the hospital A&E filling up due to GP still not giving face to face appointments if you can get an appointment at all it is by telephone in our area, However having been given some pretty grim news 9 months on end still not seen a Consultant,
I was a little peeved that the one time that I don't have a scan I develop an infection in my gall bladder which they would have picked up on if I had had my yearly scan.
I haven't seen any Consultant since diagnosis End stage 4 Liver Disease 9 months ago, I have had bloods, scans varices banded but no Consultant has seen me since Hospital discharge, Very strange maybe they think I may pop off waiting lol, sorry for dark sense of humour but I've gotta laugh, I believe some patients at the Royal Stoke with Liver Disease have been seen, maybe they didn't put my name in the hat lol x
They’re not worried about you then Tia, suppose it’s good news really but all the same you need to feel like you’re being closely monitored. You won’t pop off Tia! Hope you get seen to soon. X
I received my diagnosis Feb last year, met my consultant and then had my drain in March, endoscopy in September and a scan/bloods October. My treatment was never affected.
I think you are right, I will, sometimes you just loose the will but it is time to at least have feed back and to ask about possible future transplant referral xx
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Liver transplant waiting times.
Liver retest improvement times?
Long time no see 👀😏😉
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