I don’t think there’s a general problem here. My friend just received his meds via FedEx from India to UK in 3 working days over the period where people were concerned. Just be sure to have a reliable supply chain who use the correct documents.

Excellent report.

Hi Ken, Congrats on your UND – Makes it all worthwhile

Interesting re the 6 week mark, at 6 weeks I also caught a ‘cold’ (but really only a v short period of sneezing) , this then went to my chest and sinus’ and caused infection and have been in bed for 10 days on antibiotics! Today I got up and walked a short distance briskley for a couple of hundred yards, came home and felt totally exhausted and cold (v cold here right now in the uk) so I went back to bed to keep warm and have just woken up from a deep sleep, been out for 3 hrs, this is so unlike me.

I have read something about temporary hb spikes, will try to remember where!

Hoping my next bloods show UND like yours !
ps I am on the same drugs as you, but Hepcivir-L

Hmmm that’s interesting Dt – I thought it was so they could use the data for their patient reps in each treatment centre to help access and keep an eye on any rogues rather than name & shame, either way, I will look into it carefully and how/if they will go about it…I do not feel like going public at all ! I do think the HepC Trust may work with PALS too.

(edit) What I care about, is patient access to medicines, being at the ‘centre of care’ and being treated with dignity and respect.

DT I am so VERY sorry to read what happened to you – hmy: To have to endure 4 weeks more of unnecessary Interferon ‘therapy’ because of it, pure That must have taken some getting over. When I am better, I shall be typing up my big blue book and giving it to the HepatitisC Trust for their patient experience thing. Not sure where else to send it right now and now is not the time. I do truly believe we HepC patients suffer more than patients with other conditions for one reason or another.

This explains exactly why we need to take many matters into our own hands with many things and ‘keep our eyes on the ball’ – I mean, who else will?

Seeing as we’re moaning today My other gripe is with administrative errors re blood test results. Consultants often dictate their letters into a dictation machine for secretaries to type up, I have had so many errors regarding this, including blood tests. Once Alt21 (really 71) and such the like. anyway, it wasn’t irrelevant anyway, as they sent the results to a complete stranger across the other side of the country, so my GP never received them. I guess admin are very under stress in the NHS currently, but still, with blood results, maybe they should double check? This is anther reason to have access to the results sheet, then we can copy and give to our consultants / GPs etc It is so helpful.

In 2014 I was at one hospital, (the one where the consultant didn’t show up for my initial appointment after diagnosis leaving a note saying he ‘didn’t want to see me’ so I changed hospital (for many other reasons too) – next hospital was good until my consultant retired (even though they were the ones who mis-typed letters etc I managed to get copies of tests ). So, unhappy with allocated new consultant , I changed to my current one (excellent so far). The referral was messed up and I had to sort it (but hey,we’re used this by now) They had re-referred me back to my first hospital (woahhhh !!!) I rang the first hospital to tell them I wouldn’t be attending the appointment as there had been an error with the referral people, they asked who they were so I told them, they said they’d never heard of them and put me through to who they thought I should speak to. After holding for some time to some hideous music, someone answered, they were in India (yes on my phone bill) and had no idea about anything and weren’t even medical related ! It is so frustrating and takes up so much time.

Fast forward, yesterdays post brought me a ‘first appointment’ with………Did you guess? Yep, the original consultant who didn’t show up to my very first appointment in 2014 – I kid you not I guess he’s doing well financially being paid for these consultations and not showing up, Hey?

The good news is, that my letter from new hospital did arrive at the correct GP surgery, (albeit addressed to a Dr I have never heard of there and with the obligatory blood test result typo ) – I think they re just too under pressure to get things right in many areas right now, so It is extremely important for us to have access to our our test results, so we can copy (in our Big Blue Books) and carry to any appointments – Easy peasy and saves money, time and post for them, all they have to do is click ‘print’ now and again.

I have visited a medical centres in other Euro countries before, they give you a copy right there and then of your examinations, copies of test results etc when you leave ensuring you have them all in case of need, no typing needed as they have digital forms ready to fill in. Must save them time too and makes total sense to me.

I do feel bad when I complain about the NHS, they have been good in other areas in the past, but as you say, when these errors and delays can affect the health of patients, (as it did you DT) it’s a serious matter. What if a typo reflected a fibroscan eg? My notes from 1st hospital haven’t arrived at 2nd one yet, surely they should be digitally accessible?

My offering for today, goes out to Tim at MonkMed, Dr Freeman and all of you guys

https://www.youtube.com/watch?v=4ULVQOneeZE