I ordered a repeat prescription on 28th June, both with the GP and my regular pharmacist. As of today, I have still not received it and other prescription were initially delayed by many days.
A palliative nurse called on Monday 03rd July to see how I was getting on with the medicines she has recommended, but not received. I was unable to give her any results due to not having the drugs. She rang the chemist and told them I needed my drugs urgently.
It is now 8th July, and I still don't have my haloperidol which was ordered 28th June. I keep reducing my dose to try and stretch what I have left. This medicine stops me vomiting so if I start vomiting again then NONE of my medicines will stay long enough to be effective.
The chemist is closed until Monday. I rang palliative nurse but they are closed and a recorded message says ring 111. I can't speak very well so I tried 111 online and all that did was refer me to my chemist which is closed!
I am totally stressed and frustrated. Is there any wonder that people top themselves.
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ginkgo
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This isn’t human error, this is a big problem in the US as well. We have a chemo supply issue, they pick and choose who needs it the most now. I’ve had a few meds on back order too. Sad world we live in now.
sorry to read of your frustration at lack of access to your meds. I had a similar situation recently - having had 3 chest infections since December I finally had a chest x-ray mid February, 5 weeks later results weren't in. managed to see respiratory consultant on 2/5 and he recommended some new medication and dictated the letter to that effect whilst in the consultation. I only received the meds from that change 2 weeks ago as like you, the letter although dictated hadn't made it past the secretary's desk to be sent digitally to the GP practice for the pharmacy to access. In your situation, is there a local pharmacy inside a supermarket for example that might be open who you could call for something and explain the situation? I know they won't have access to your records but they may have something to stop vomiting as you say to ensure the effectiveness of your treatment. Is there somebody who could call your GP practice/pharmacy in the morning on your behalf? if you have the nurse's number, could you call her given how she understood the urgency of the situation? I hope you get some help soon.
Sometimes people forget that cancer is the enemy not one another and that frustrations in the system can be really upsetting for those affected by them.
Thanks for the good advice Janette. You are a stalwart on this forum. I am sorry that you have also suffered delays.
My Macmillan/palliative nurse is due to visit me tomorrow so I hope she will try to sort the problem again and get me the meds as prescribed. I find it all to be too stressful which in turn makes my condition worse and my hubby is feeling the strain too, as he is fed up of being sent here, there and everywhere trying to get me the meds and simultaneously take care of me.
it's a roller coaster alright - and sometimes it feels like we have to fight the system at the same time as the condition..... does your hubby have any support? must be so frustrating and disheartening.... hope things improve for you soon. do let us know if you manage to reach anyone tomorrow.... and ask the nurses to advocate on your behalf within the system if they can.... good luck. thinking of you both.
It is completely understandable your frustration and we hope that it has been resolved today for you. JanetteR57 has provided great advice, of which there is not much to add.
You are welcome to contact us if you would like to discuss anything, our ask the nurse helpline is 0800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600, alternatively you can email us at lungcancerhelp@roycastle.org
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