There will no doubt be a number of people out there who have had a liver transplant, and who are still expecting to receive a letter from the government informing them that they are on the, "high at risk" scale, due to their bodies immune system being turned down. It would appear that some of these letters in Wales have gone astray: dailymail.co.uk/news/articl...
For those of you who don't like the Mail, this story is also covered in, "Wales Online": walesonline.co.uk/news/wale...
Unbelievable 🙄. In contrast, I have received three letters, GP, Hospital and Department of Health. I have also been called by both the NHS Coronavirus support and the local council plus I get daily text updates. So they have got a lot right.
I also read this article in the Lancet about early studies from Italy about the risk posed to past transplant recipients.
thelancet.com/journals/lang...
Hi Mark, I've been getting emails from the BASL. In one of them they talk of the Covid19 .
"The government previously had asked patients receiving immunosuppression for a liver transplant or autoimmune hepatitis to be shielded. As no central register exists for patients with autoimmune hepatitis on immunosuppressive medications, individual hospitals with the help of specialists have been identifying these patients for shielding.
NHS England is asking that both lists of these patients should be passed onto the COVID19 lead within their hospital by Monday 13th April. They will then pass this information onto NHSE.
Can you please ensure this information is passed onto the relevant person within your Trust?"
This would be nice and all very well, but I've tried to make contact with my local NHS trust and they can't help me. In fact they are totally supportive. When I had my transplant, they told me to continue to be treated at the QE and not them, as they couldn't afford to pay for my prograf. I have that in a letter. My MP was disgusted. I like a lot of people have rallied round and have been very supportive of the NHS, but it should be remembered that a local NHS is only as good as the local healthcare trust and the local CCG's are.
It just goes to show that although the application of medical care is the most standardised in the world, the link between the different Trusts, exposes the glaring problems.
The hospital letter is from my local trust and ultimately, they will take on my care, including ordering in the medication that I currently collect from the Royal Free.
It still amazes me that the individual Trusts are unable to get their IT systems to interface, therefore it comes as no surprise that there is no centralised registration.
This has been my biggest concern over the way different healthcare trusts are run. When my local trust sent me down to the QE back in 2016 for treatment on my liver tumours using the Liver Ablation treatment, they sort of washed their hands of me. It was a bit like say, "Oh, you come under the QE now, not us". I really don't know how things are run. But after I had my transplant and was discharged back the my own GP and healthcare trust. The Gastro Doc I was seeing up at the hospital then told me that if I was still having to go down to the QE every few weeks after post-opp care, they could look after me as there was no point in two different hospitals doing the same thing. This is when they said that the QE could cover the cost of my prograf as they couldn't afford it.
The stupid thing is, that while the QE is more than happy to give me six months prograf at a time, this cost gets passed on to my own healthcare trust. The QE also add on an administration fee. So it's costing my own trust more in the long run.
The only thing I can think of, is that if a certain department refers a patient to another hospital for treatment, then that cost may come out of that departments operating budge . This is why I suspect that my Gastro Dr didn't want to have my prograf cost being sent to her department. Now the QE are billing the Healthcare trust directly, so the cost isn't passed onto the department.
While many people see the NHS for being a great British success story, I see it as a total mixed up mess. Now that CCG's are involved has made things a whole lot worse.
Hi
I have compensated cirrhosis, diabetes etc and have just received my letter from NHS and yesterday I got one from my GP. I was talking on the phone to one of the receptionists , she said her brother hadn't received his and he has got cancer!! She was quite upset which is totally understandable, I really felt for her, her brother and the rest of their family.
How are you doing at the moment? Stay safe Lynne
