CLEXANE & PVT

[Peeps7]

I have written about my husband many times and am always so very grateful for your invaluable support. Peeps was first diagnosed with cirrhosis five years ago, PVT three years ago, is currently ESLD and recuperating from open surgery to have a septic gall bladder removed - precipitated by his PVT. His hepatologist prescribed Clexane at the end of January - Warfarin and Rivoraxaban have not responded to his PVT, so the Clexane is his last hope. I am paying £23.70 per day for a private prescription, our GP has finally conceded just 20 days’ worth but has now pulled the plug. My husband’s multiple varices are as a direct result of the PVT and now he is being denied Clexane unless we pay for same, a huge amount when we only have a state pension. Does anyone else have experience of this please or suggestions to make ? Thanks in desperate anticipation, Anne.

[GrandmaDylan]

Is clexane not available on nhs prescription? I assume not if you're having to pay for a private prescription. I really can't believe that something your husband needs to stay alive is not provided. Can't his hepatologist prescribe it? I have cirrhosis caused by AIH and don't actually know what PVT is. I'm sure that someone more knowledgeable will be able to advise you. Good luck. Deb

[Peeps7 in reply to GrandmaDylan]

Morning Deb, Peeps too has cirrhosis as a result of AIH and here we are five years since diagnosis. PVT stands for portal vein thrombosis and I just hope you never have to find out what it is. He has always been under the care of a private hepatologist at London Bridge (he obviously does NHS at Kings) but he has written to our GP and sanctioned and requested Clexane prescriptions on the NHS. To make it even more ridiculous, our GP has actually written NHS prescriptions for 20 Clexane injections on the NHS, but he is now refusing any more. I am at my wits end, I am getting great support from our District Nurse and Peeps’ Hospice Nurse but still cannot get Clexane on the NHS. Anne x

[Barnetaccounts in reply to Peeps7]

Hi,

Although not the same diagnosis or drug, I suffer with HE and am advised that taking Rifaxamin will help with prevention of any episodes. I am happy to report it does, but when I went to my GP and ask for them to be added to my normal prescription, they refused making them hospital issue “only”. I went back to my consultant who I see privately and lo and behold I was issued with 6 months supply through the NHS. My advice talk to your private consultant, who could arrange an NHS script and may just sort out the issue.

Ray

[Peeps7 in reply to Barnetaccounts]

Hi Ray, thanks for your reply and details of your experience. So glad the wonder drug Rifaximin is working for you too. Peeps was prescribed same about three years ago and again a battle ensued but yes, we were lucky to have the drug prescribed on the NHS indefinitely. I shall obviously persevere and just hope that eventually, I can report the same outcome with Clexane. Thanks for your input, Anne.

[Hidden in reply to Peeps7]

Hi Peeps7

You have probably already tried, but have you contacted your local CCG clinical comissioning group to discuss this? Here is the link to locate yours;

nhs.uk/Service-Search/Clini...

Best wishes

Trust1

[Peeps7 in reply to Hidden]

Hi, I have spoken to the lead pharmacist at my local CCG today and she was thoroughly unhelpful. As far as I can understand, there is a conflict between my husband being under a private hepatologist for his treatment which has all been met by BUPA for the last five years but NHS for our GP and prescriptions. It would appear that our GP is exercising his clinical responsibility in refusing NHS prescriptions. I have a meeting with our Practice Manager and the leading GP at our surgery later this week but this is my last hope. As I said to the Pharmacist at CCG, they are all effectively giving my husband a death sentence unless we can find £730 per month, on a state pension. I would very grateful for any advice.

[Hidden in reply to Peeps7]

Hi Peeps7

We are sorry to read about the situation you are in. Here is the link to the NHS 'how to complain' pages. Hopefully they may be of help?

nhs.uk/using-the-nhs/about-...

Best wishes

Trust1

[Grank]

This is Grank’s wife here. I’m so sorry for the stressful situation you are in.

My personal experience with anti breast cancer drugs is, although my surgeon and two oncologist’s prescribed a specific generic anti cancer drug, my GP was allowed to overrule them on the basis of cost. He said that according to NICE regulations the pills couldn’t be justified on cost and for that reason our local health board wouldn’t allow them. After a great deal of wrangling however, he did find and prescribe another cheaper version of the pill. Another lady I know has been prescribed the generic anti cancer drug and her GP justified doing so , saying it was in her best medical interest.

It may be worth your while contacting your healthboard as the ultimate decision on whether the cost is allowed is down to them. You might point out to your health board that fire fighting after the event is far more costly in the long term. I lost valuable time due to financial wrangling over pills and am now being investigated for the extent of mets. I did for a while purchase my own for £166 a month, but as you say, this cannot be managed on a pension.

My heart goes out to you. I hope your Health Board can resolve the situation.

[Hidden]

I have just had an operation on my ankle as a day case. On discharge, the hospital gave me 6 weeks of clexane (heparin) injections to use at home to avoid post-op vascular problems. It is a prescribable medication. nottsapc.nhs.uk/media/1080/...

If you have problems with your GP prescribing it you should urgently contact your CCG.