Medication not affordable anymore

I am not sure if dentists would be able to provide xylocaine ointment. The usually use it for local injections. There used to be a topical anaesthetic that they used sometimes for pre-injections to numb the gum, but I wonder if it would be strong enough for Sydney Person's requirements.

Probably worth enquiring though.

Mary

Hi,
I'm wondering if your doctor could call Medicare, this is how my GP gets my authority scripts done, instead of 28 tablets I get 56 and I get it for the same price as the 28.
I was with bupa and I could claim my non PBS scripts through them. I'm on a pension card so I only pay $6 for my PBS scripts, but if I was to pay full price I could have claimed them from bupa, I'm now with hbf, but I'm pretty sure I can claim still.

I wish you all the best, cp is horrible, I've had it for 8 years, 9 this year

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I've tried at 2 outpatient pain clinics now, because I have moved and can access a hospital in the new area. Both have said no to getting in Xylocaine Ointment in for free or at a reduced rate (The company that makes it have told me they give discounts to hospitals)

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That is very unfortunate SydneyPerson,

The only thing that I can think of here is to have a chat with your GP and see if he/she has any suggestions. I once had a GP who told me that they are the coordinators of all our treatments, specialists etc. She is correct. Your GP should be able to at least contact the public hospital pain clinics and get an answer as to why they will not prescribe it.

Good luck, stay in touch

Mary

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so sorry you are still having a tough time, i have no doubt that the degree of pain and frequency of flare ups is being made worse by the lack of access to the pain medication that helps you get some relief. i understand the reluctance to go to the media especially for such a personal condition but the others are right that you should be able to ask for help to maintain some privacy, there is no need to go into condition specifics as lack of access to effective treatments for chronic health conditions is become more and more of an issue, partly because of meds being removed from the PBS or only approved for certain conditions etc. in the past hospital outpatient departments have been a good source- i know that for years i had access to lyrica via the hospital when i could not have afforded it on a private script! i think that now they hospitals are feel the budget crunch more and more they are being a lot quicker to say no. even with lyrica there was a time where public hospitals had tried to say they would no longer dispense it at pbs prices but with pressure they seemed to back down.

the only other thing that comes to mind is that you have said that one public hospit refused to take you one because it was mainly for medication management and the other said no because you live outside their catchment area. From what you have told us in past posts you have stacks of information that backs up that you have tried everything reasonable (above and beyond actually) in managing you condition, so its not like you are going straight to the hospitals for the easy option! I would suggest that you have a situation that your health ombudsmen should be able to assist with. Firstly because the hospital you tried first should have considered that this was the only treatment that had been effective and you are left with disabling pain without the ointment- it would be expensive even if you worked full time!! secondly, the second hospital said no because of where you live, and it is correct they all have catchment areas, but these can be bypassed to some extent in certain circumstances, and not being able to access the treatment at another public hospital etc has been one reason they have done so in the past ( and still should). I travel to the other side of the city (about a $70 cab fare by access cab) to go to the pain unit that helps me and have done so for over 15 yrs but initially i went to my local public hospital which is the major one in the city centre, but back then i was deemed to be a candidate for an implanted pump to deliver meds diret to the spinal fluid and they were not doint that at the first hospital back then whereas the second had been heavilly involved with its development- i continue to get my pain managed there as we have worked well mostly and i have been able to access other OPD and inpatient services - the only time the catment area issue comes inot it is at my local hospital i would be able to get transport help to attend appointments as i am wheelcahir dependant, but not from where i live, basically any of the home visitng services that hospitals have such as early discharge home nursing are still out of reach but thats not been much of an issue. Lastly, you mention that you are on dsp and i am assuming that its due to pain related issues ( sorry if this is too big a jump to conclusion) i only mention it because if you add to the mix that now that your pain levels are higher and more frequent, the pain is more disabling making the likely hood of getting any paid employment lower and if you work part time you might argue that if the pain continues to be unabated it could make it harder to maintain part time work- increased dependence on benefits- it's an argument worth trying with someone like the ombudsmen

the public hospitals also have a patient advocate based in each hospital and they may be another source to try but personally i thik you story is perfect for the ombudsmens role- a painful and debilitating health condition that was under reasonable control is now very distressing and disabling basically for finacial reasons and lack of help through the public health system when private options such as paying full costs for the meds is just not viable! it really is worth trying

Hi Kebsa,

can I please ask where you are?

i'm just wondering as you mentioned Lyrica being on a private script.
In WA as long as you have an authority script it is on the PBS, I'm incredibly lucky
as I also have a health care card, if I did not have this, I possibly would not be able
to take my medications, as I'm on 5 different medications daily with one other for when
my pain is extreme

Hi KylieAnn.

Lyrica is now on the PBS and everyone can access it at those prices. I think that kebsa was referring to a time a few years ago when it wasn't and people had to either pay huge sums of money or access it at PBS prices through an OP department of a public hospital.

However, I believe that public hospitals were supposed to trial Gabapentin first and if that was unsuccessful, move on to Lyrica. Presumably Gabapentin was cheaper! However, because Lyrica was producing results, I believe that some hospitals were prescribing it as a first line treatment (at least one of ours here in SA was). I know that I was prescribed Lyrica without a Gabapentin trial, although I had previously tried Gabapentin privately for a few days but it gave me a backache! Go figure.

Anyway, it did cause some major upheaval in one of our hospitals as everyone had to be "approved" to continue taking Lyrica. Fortunately, that is all in the past now with Lyrica being available on the PBS. However, you do still need to have an authority prescription and the criteria is "intractable pain that has been unable to be relieved by any other means". That wording may bot be totally accurate, but that is the gist of it.

Mary

I can say you are correct Mary, I was prescribed Lyrica first, when it became apparent I could not tolerate it they then tried Gabapentin which was even worse. That also changed after a short while after my trial in the pain clinic, to where you had to trial Gabapentin first before having lyrica available, it came down to costs at the hospital pharmacy as those with health care cards were being subsidised to receive lyrica at PBS prices, but only if the pain specialist at the hospital pain clinic issued the script, which meant regular appointments to get script renewals.
A lot of patients were having to change because of the new regulations, which meant they went from relatively low doses of Lyrica to high doses of Gabapentin.

Don

Prescribing of Medications for Neuropathic Pain has changed so much since after 2000!I remember my husband,Rowan, after his first stint down at Hampstead with Dr Ruth Marshall,being prescribed Carbamazipam (after Spinal Cord Injury.)I can remember Dr Marshall saying as soon as you get back to Darwin make sure they (Dr Gavin Chin Rehab & Pain Mge here),change you straight over to Neurontin as it;s a better drug for you but we cannot prescribe it down here in SA for Neuropathic Pain.
Back then we didn't have a Health Care Card or any help & when I got his monthly prescription filled I almost fell over! MBF as it was then),would've rebated some of the cost but that's all.Prior to that Rivotril was used and that had him like a zombie!
Hope everyone had a relaxing & less pain filled Easter Break!Cheers Deb in Darwin

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Hi SydneyPerson,

I am sorry that this is so difficult for you. Have you discussed the situation with your doctor? I am not sure whether there is a solution or not, but your doctor should be able to advise you somehow. It's important for him/her to know how this is affecting you too because the stress is possibly making your pain levels worse.

I hope that you can find a solution to this. Pain relief is a human right and it should not have to depend on whether or not you can afford to spend large amounts of money.

Let us know how you go as I am sure that there are others here with the sane problem.

Mary