6 weeks ago I saw my PD nurse who recommended that I consider trying the apomorphine pen. It would appear that the procedure is, that the hospital needs to share my care with my GP, this would allow the GP to prescribe the drug and the hospital would oversee the implementation and manage any side effects ect.
I had an appointment with my neuro last Friday and he told me that my GP had refused to sign the shared care forms and that meant that my GP has refused to prescribe the drug.
The hospital is appalled and they are taking the case to the PCT and I have written to my local MP.
In the meantime, I the patient wait and I am unable to access the drug without my GP’s involvement in this process and my GP says ‘we don’t do shared care’ and ‘it’s nothing to do with finance’.
If this is our future in the NHS God help us all.
The next Bill to be passed could be a Euthanasia Bill....then all of us chronically ill people can line up to have our drink before we ‘nod off’. The Government have already told us that we are living too long and such a Bill would solve many of the Governments problems, less out of work, more hospital beds..ect..ect..
This whole situation has upset me and I am now feeling like a bloody burden on society. What’s next, I wonder?
so sorry and saddened to hear your news the postcode lottery bit still seems to exist !!!.
That is obviously your GP's
decision although I question that it is not for financial reasons, the process is to make an application to the Primary Care Trust ( PCT) and writing to your MP will help.
I know it is difficult but keep challenging the decision, it may be worth mentioning where is the 'duty of care ' ? If your Neuro can evidence that apomorphine is needed as all over avenues have been explored that will help your case.
You mention Dystonia my o/h was diagnosed as i have mentioned before with Diaphragmatic Dystonia which we have been told can be/is a separate condition to PD and the only rescue drug fro this is apomorphine if this is the case in your situation that should be pointed out to your GP.
good luck GC hope you succeed x
I am disgusted Glenchass. Reading your post makes me so mad. I hope the devil strikes 10 humps on your doctors back. What a bl**dy cheek he has.
I as you know live on the IOM, I have never been refused any of the meds I need for my condition, and God help the GP that would refuse me them either.
I must stop before the top of my head lifts off with the temper that's building up.
You know I wish you well, loves of love.
glenchass im also disgusted by the way ur gp has treated you ,u tend to read or hear things on the news like this,and dont expect it to happin to you ,wot a shock,im so sorry glenchass,and i wish you all the luck in the world that your gp see sence ,big hugs ,please dont give in ,x
are these persons completely unaware of how badly we react to stress? Am sticking pins in dolls.
So much power in the hands of the ignorant.
GOOD EVENING ..sorry its so late but this is a topic very close to my heart and my well being and i feel so outraged for you .
I suspect the reaction of the GpISVERY MUCH FINANCALLY DRIVEN with a large measure of ignorance re the whole APOMORPHINE process ..though clearly i have no proof and am only making a value judgement .
I have been using an apomorphine pump for the last three years with great results and with the unquestioning support and back up of my gp andlocal pct . There IS a financial implication as these are expensive drugs
HOWEVER that is just not good enough if you have been advised that this will help your quality of life and therefore in the long run save funds from the local nhs pot.
Do not give up or lose heart ..you must fight your corner and if there is anything i can help with please contact me...bridget c.
oops sorry ...SHOULD READ PCT..PRIMARY CARE TRUST ...its late ..lol
Yodapark makes a very good point. If some GP's have limited knowledge of PD, then their knowledge of the APO pen and pump is almost zero? When i was put on to the APO pump i was surprised to find nobody knew anything about it at my local medical center? Despite having circa 10,000 people under there care, i am the only APO user. I fought hard to get my GP, District nurse and even the pharmacist to agree to order the component's needed to operate the pump on a ongoing basis. All i kept getting was " we don't have a budget for this" or "it costs to much", both of which are wrong! Your GP has a duty of care towards you and i strongly suggest your PTC and in particular your Neuro should write to your GP and point this out!
And the government want to put GP's in charge of the NHS?
Go to your MP and get Davie C explain this one.
Thanks everybody for your support, my neuro is taking the case to the PCT and I have written to my MP. I'll keep you all informed of progress.
Well done GLENCHASS Please do keep us informed.
Lots of love
glenglass ..EXCELLENT NEWS....
Glenchass, you are obviously not a burden on society, but that wretched GP is! If s/he lived your life for a day no doubt the decision would be different. So glad your neuro etc is fighting for you. let us know what happens.
Hi all, thanks for your support.
Just to let you know Ive just received a letter from the House of Commons. My MP has written to thank me for bringing it to his attention and tells me he is looking into it. He will contact me again to let me know the outcome.
In the meantime.....I remain in pain!