Late yesterday afternoon the pharmacist from the CMDU rang me with a long rambling apology for why I don’t qualify for antivirals as the CMDU staff make the decision - interpreting their take on government guidelines for each patient. He continued to refuse to prescribe the drugs as I requested - it being day 5. I just kept reminding him that the guidance says all patients with CLL qualify - regardless of what CMDU staff think. I mentioned I’d put in a formal complaint to the CEO. He rang back after half an hour saying he had ‘reflected’ on our conversation and would be couriering molnupiravir over that evening. So after 5 days of hard work and endless calls involving my haematologist, my GP, 111, Blood Cancer UK, the CCG etc. I finally got to take antivirals at 8pm on day 5. I want to thank all of you who have supported me during this battle & I hope it’s gone some way to reforming a ridiculous situation whereby the only people in the land are making arbitrary decisions about people they’ve never met about potentially life-saving drugs that those people are entitled to, including dismissing the advice of that person’s own GP and haematologist.
Finally after my 5 day battle: Late yesterday... - CLL Support
Finally after my 5 day battle
So frustrating but well done for continuing to self advocate and getting what you need and are entitled to. Your last sentence sums the situation up well 😕
Well done for being such an amazing advocate for yourself, I am not sure I would have had the energy to keep battling. I hope you are feeling better very soon.
Colette
Thank Goodness! Glad you persevered!
So pleased that you finally managed to get the antiviral medication! It’s so wrong that you had to fight for it just like I had to do by jumping through hoops for something that is rightfully ours! I hope other people on this forum realise how difficult things can be and that they mustn’t give up after being told no or not receiving the phone call they expected as in my case! I also wonder if there has been such a demand for the antiviral medication in some areas due to this present wave and perhaps you were refused it because there was a shortage in your particular area? Just a thought 🤷♀️
Anyway I wish you a safe recovery and hope you’ll soon be feeling brighter. Take care.
The only way it could have been a tougher battle anapurna is if it had been over Christmas! I had the devil of a time getting treatment then eventually succeeding on the 4th day. If we have to live with totally open Covid borders, it shouldn’t be like this.Relieved to hear they listened at last and your determination was rewarded.
Newdawn
I so agree & appreciate your Christmas attempt must have been hellish. I held out little hope that the pharmacist would have a change of heart at the eleventh hour. My GP assured me it was worth taking the meds so late after diagnosis so I am.Just hope my complaint prevents others from being fobbed off!
What is so frightening is the only way we can risk doing more is by knowing that there is help. I realise that things might not work out as I thought they would.
It would be fantastic to be given Evusheld when they eventually fund it but can you imagine the fight we will have.
Well done and you still need to complain about the fact they dont know what they are doing playing god with peoples lives.
I had a similar situation over the long New Year holiday period. Would have got nowhere without self advocacy, finally got my Haematologist involved who got it sorted and communicated with CDMU just in time. Someone in another support group who lives about 30 miles away was given infusion within 3 days without hassle. Seems like another case of post code lottery. The directives do say that if your symptoms are stable and no signs of deterioration then they can turn you down. However I know a number of people who’ve had relatively mild symptoms initially who have deteriorated at days 6-7!
A victory for you is a victory for all of us! thank you for your dogged search and pushing all the proverbial buttons you could push to finally get the response that should have come with one phone call.
Good for you, Anapurna, for hanging in there and getting what you need! It can be maddening, but you got what you needed, and may you have a speedy recovery now. 👍
That situation needs to followed up and discussed. My consultant said some of his patients had not received antivirals because CMDU did not think the symptoms where bad enough. They ended up in hospital.
Oh well done - seriously impressive of you. I am so pleased you eventually got what you were entitled to. Maybe blood cancer.org would be interested too? How dare some random person “interpret” a clear statement and ignore qualified medical advice. Again - well done to you for battling on.
My son who doesn’t have CLL But other health issues causing him to be at risk also struggled to get the antivirals . His wife spent two days numerous phone to even more numerous people all with different opinions eventually after four conversations with their GP who originally said he wasn’t eligible changed his mind and on the fifth day of the infection the medication was delivered . The system for getting this medication quickly and efficiently to those who need it isn’t working and for some reason the very people who should know what to do don’t seem to have a clue Rant over have a good day 😊
My own and probably many others worst nightmare of having to fight for what you are entitled to at a time when you least feel like it. I am so pleased that you have finally received the drugs you need. I hope they work well for you.
I am on W & W and had positive PCR on 19/12, on 20/12 I was contacted by my GP and admitted to the local hospital "Virtual Ward". At midday on 21/12' I was contacted by CMDU and molnupirivar was couriered to me later that afternoon. On doing some research in to this at that time very " new antiviral" it was apparent that each 5 day course is £500+. Are CMDU staff now, some 3 months down the line being told to be " selective" in their use of this drug because of the high costs to the NHS ?
My experience with Covid. LFT +ve Friday, symptoms headache, sore throat feeling a bit yuk. Priority PCR posted. Sunday confirmed PCR test results and feeling rather poorly, temp chills, headache and coughing . Phone call to haematologist who prescribed oral Paxlovid/ Ritonavir which were delivered to the home that day by hospital pharmacy system. Monday phone call from National system offering possible covid treatment, whom I advised that my haematologist had prescribed already. I was lucky enough the system worked for me. Thankfully feeling much better, just rather tired and snotty. Sorry you had such a fight anapurna, wishing you a speedy recovery ❤️🩹 Love2sing England W&W
I’m so pleased you eventually got what you’re entitled to and wish you well.
Well done little squeaky wheel! Congratulations on persisting in the face of bureaucratic intransigence xx
10/10 for persistence.
Your experience, and what MovingForward4423's consultant said, shows that individuals at CMDUs, charged with potentially life and death decisions, are not qualified to make them. We may as well have bus drivers standing in for airline pilots.
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