Let down by promises

[Mick1414]

Just about a year ago, I was diagnosed having Cirrhosis of the liver, the consultant asked if I would like to be put on a trial of a new medication (not told the name), I was told it would start early this year, When nothing happened, I started to chase this up (bearing in mind I was also told I would be one of the first to be put on this trial), only today I have been given an answer that I was or would not put on this trial because I had COPD complications. I was honest from when I was referred to my liver consultant that I had slight COPD so he knew of this, I have not suffered from COPD for at least a couple of years now which he also knew. Now I do not know where I stand as I am having no medication for my Cirrhosis and my last Scan a couple of weeks ago is fine.

I have asked for a face to face meeting with my liver consultant so I can put questions to him. Has anyone else been let down like this?

[Anthonysmate]

Greetings Mick my first post, which happens to be a reply. I was diagnosed last June as having stage 3-4 Fibrosis with bridging after biopsy, which unfortunately didn't go well, i was one of the 5 % who had complications (bleed due to accidental contact with bile duct).

The upshot is they did offer to put me on a trial for an anti bridging drug, but after further assessment with other medication I'm on, and taking into consideration other medical issues I have, like yourself they decided against putting me on the trial, however if the drug turns out successful from the trials they said I would be first on the list for consideration, which probably means they don't want to risk my health in the trials, but would consider me for treatment should it be a success, with reducing or stopping further bridging which leads to cirrhosis.

Regards Anthony.

[bcsurfer]

Hi

I have not had a medical decision reversed, but I have been given medication that whilst not entirely at experimental stages, was one not frequently prescribed. (Not for your condition, I should add).

What I became aware of was the cost, when a GP at my Practice made an indication of panic that this may have been coming from the Practice Budget and not assigned elsewhere in the NHS.

Whilst my prescription is issued by my Doctor I notice that the paper copy marks that it is prescribed by the Hospital. This may indicate that the cost is reassigned.

So, I suggest that you might ask that question. If cost is an issue it may be a case of pairing back an over all budget rather than a specific medication.

If cost factors in to the trial element it could be other factors such as age have adjusted the criteria parameters to narrow down the field of participation.

A medical explanation for a shift in strategy is an entirely different matter.

Worth asking about funding. Maybe you could self fund the medication if you have the means and have been moved from the NHS criteria qualification.

Good luck!