Most of the time I think our NHS is wonderful but every now and again I get VERY frustrated. My haematologist started the idea of beginning the pacritinib trial at a hospital near me several months ago. Each time I see him he tells me that he hasn’t heard back from someone! He eventually said he would ask our favourite Professor for some advice. My last appointment 5weeks ago I saw a colleague of his who told me that he had actually heard my consultant dictating the letter before he went on holiday. I saw my usual consultant today and he told me he had not had a reply. He started to look into it and discovered that it didn’t look as though the letter had ever been sent!! He also found a letter from February about something else that had never been sent. He said he knew that there had been admin problems at the hospital but it seems the way they have managed to catch up is by selecting which letters to write and ignoring the rest! He was almost as unhappy about the situation as I am but at the end of the day it is not impacting his life! He is now going to email the Prof for some advice so it will have been delayed by yet another 4 weeks and if they do start the trial nearer to me it will not happen overnight!
Sorry for the vent because I always try to be positive in posts I put on here but every now and then I have to vent to folk who actually understand my frustration
I hope we are all as well as we can be. Best wishes, Jan
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beetle
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Hi Jan, every sympathy, it’s so frustrating when you think health issues are being sorted and it turns out they are not. You’ll have seen my rants too!
Hi Jan. i totally agree with you - and I admire your restraint. its maddening that the NHS can do the difficult things so well but can’t get it’s act together with simple things like communicating between professionals in a timely way.
There really isn’t any need anymore to go through the old fashioned method of dictating a letter and having hard copies posted .
The NHS has a nice, secure enough email system that can be used. Its much more private, too, than letters and faxes that can so easily go astray.
Might be worth logging the situation with the PALS team at your hospital?
As you said, its you, the patient who suffer very directly.
Hi Rachel. I have just had PALS sort out a problem I was having with prescription delivery so not sure I want to get a reputation!!! My consultant felt he was not getting very far with emails either so had resorted to snail mail! He is going to have another try with email! We’ll have to see how it goes. Not sure how long my restraint will last if things don’t get sorted soon!
Its a hard one to call, isn’t it, in terms of , as you put it of “ getting a reputation”. I speak from my own experience. The last thing I wanted to waste my precious, limited energy on was dealing with unhelpful administrative systems. Getting a copy of my blood results at consultations was the thing that I found endlessly frustrating.
However, PALs are supposed to be there to fight on our behalf - and this one seems important. Its a huge waste of NHS money if communications don’t happen. And access to practritinib could be life saving for you.
Very happy to help you in any way I can. Do feel free to send me a pm if thats easier.
It’s like anything in life, unfortunately we sometimes have to make some noise to be heard, otherwise we’re pushed to the, not so important pile. If our haematologists know we are serious about our health and prepared to go to any lengths within our rights, they should treat us with the attention we deserve.
Jan, I hope you get access to the Pracritinib trials that you are looking for.
Hi Jan, its good to have a vent and reading your post very justified. The trial is too important to your health and mental well being I cannot understand how the hospital could be so careless. You must be worried enough about taking the drug you dont need this inefficiency you just want to get on with it. I so hope it benefits you as it has such a positive outcome for so many patients who have taken it. Are there any more peops in the forum taking it? Push push push this is your life. Have you noticed in life it's the pushy annoying people who get seen to asap and the nice ones who don't!!!!!! I wish you well and an early response from the medics. Take care Pat
Hi, my consultant wont email and sends letters which take three weeks to be typed! I'd be tempted to remind him he can pick up the phone and call the professor! Don't be afraid to insist on some action and don't be afraid to go back to PALS. Good luck. Frances.
Jan. You have every right to vent! Things like this are so frustrating. Like you I love the NHS but my own experience has meant a lot of chasing things myself and making things happen which doesn’t sit well with my personality! It makes me sad how stressed and rushed the staff are these days. Really hope it all gets sorted for you x
Thank you all for your posts and support. All very helpful. At the end of the day I know that Pacritinib is only another sticking plaster for me and that SCT is the only cure. However it appears that Ruxolitinib has also given a longer life expectancy and I’m hoping that pacritinib might also have some effect too now that Ruxolitinib appears not to be working for me any longer. I’ll keep up the fight! 😀
I read recently that nearly half of patients find Ruxolitinib stops working after two to four years. And I read somewhere else that a few weeks break from Ruxolitinib and then restarting got it working again.
Can’t vouch for the veracity of this but this might be worth asking your consultant about it. Hopefully he/she might know something about this.
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NHS cracks showing..!
Odd consultant appointment 
Post ET MF - Advice Please
