Hi, I’ve been taking Ibandronic tablets for years now. I was diagnosed with bone mets in 2003 and after a few years of pamidronate infusions my veins got troublesome and I was advised to switch to the tablets. All has been well and I have been receiving a months supply of tablets at a time via my GP.
But I’ve just received a call from my GP saying he will no longer supply my tablets as the hospital should be taking up the cost. Slightly worried! I have contacted the hospital and I’m waiting for them to get back to me. Where do you get your tablets from? Hospital or GP?
Belinda…x
Hi belinda,
I get all my tablets via the GP. Initially when a new pill is prescribed the hospital give me the prescription which I have to get from the hospital pharmacy but then I have to request it from my GP. Mine may be to do with the hospital being a different PCT to the gp. My GP is often not happy with the cost of the medication I am on!!
Dawn
xx
Thanks for the info Dawn. I’ve been delving on the internet and where I live the tablets are flagged up as ‘shared care.’ I’m such a control freak with this disease 
have a BIG box file for appointments etc and always stay ahead with my Ibandronic tablets…so slightly worried and just hope the hospital will now pick up the cost. Infusions were getting dreadful before I switched, the last one took 8 attempts to find a vein which didn’t collapse.
Belinda, my GP supplies it, the same as Dawn (although they did balk a bit about me insisting on Femera, rather than the generic Letrozole). However, whenever I go to the Hospital, I always get the impression the Hospital think they should be providing it. They always ask if I require any medication, and when I say that my GP supplies it, they look surprised, but pleased.
My impression is that this GP commissioning business, is forcing them to cut costs… although it could be that your surgery have employed a bean counter.
Hi Belinda
I get all my meds from my GP since ‘leaving’ the hospital a few years back. Like you I switched from IV bisphosphonates after one too many attempts at hunt the vein. I think my GP surgery has a bean counter as last year two of my branded meds, Arimidex and Bondronat, we’re changed on my prescription without me being informed. I did have extra SE’s with both changes and have now been put back on the branded ones. I will watch this space in case things change in our area as well. Good luck with the call back from the hospital, it’s all we need - chasing the right meds around.
Nicky xx
Hi and thanks for the replies Lemongrove and Nicky.
I remember receiving my first prescription from the hospital who then said my GP would pick up the costs.
Getting the impression my longevity is now getting rather costly 
although apart from Capecitabine from the hospital and these tablets and Adcal supplements from the surgery I very rarely bother GP. As I have regular hospital appointments I actually go years without seeing him. And I don’t have, need at the moment any pain killing tablets, other stuff. I feel just like the advert I will have to justify ‘because we are worth it.’
Belinda,
GP should do it but if they can find any way for someone else to pick up the tab so its not coming out of their budget, they will try it on!
Hi Belinda
I have been on Bondronat tablets from the onset of secondaries (6 years ago) and they have always been provided by prescription from my GP although the pharmacy at the surgery always insists they can’t easily source them so I end up taking the script to the local friendly pharmacy!
Smartie x
When I started taking Bondronat in 2003, it wasn’t yet licensed in the EU for bone mets from BC, so I had it as a “named patient” direct from Roche via the Christie Hospital, where my onc team is based. As soon as it was licensed (about a year or so later?), the hospital got my GP to prescribe it, along with my exemestane. My GP has never balked at funding either of these treatments, and I now get “generic” ibandronic acid tablets, which must be cheaper than Roche’s Bondronat - because Roche had a dispute with its suppliers, Bondronat became impossible to obtain. No noticeable difference in effectiveness for me.
This sounds like a real “postcode lottery” Belinda - I hope your GP will reconsider his refusal when you tell him we ALL get ours from our GPs. Failing that, my onc offered to supply mine at Christie’s if I had trouble getting it locally, so that must be your other option. xx
Thanks for the replies everyone.
I was so surprised by the call it took a while to sink in. What’s it coming to when your GP says in effect that’s it, we don’t want to pay anymore now you will have to sort it out with your hospital?
I’m now hoping the hospital will take up the cost and will let you know the outcome as I wonder if this may now start happening more often around the country with all these changes afoot…x
Hi belinda et al,
I was just telling OH about this and possibly things to come and he said ‘write to your MP’. Sometimes if you don’t go regularly to your hospital it involves extra time & money chasing up scripts when we are sick and shouldn’t be given the run around! I hate to think what will happen if our surgeries start pushing us to get prescriptions from the hospitals. I’m another one whose longevity is costing the state an awful lot of money. Just think of the cost of herceptin for 8 years! Some months back I asked for an appointment to see my gp because I was having a lot of hassle getting actiq lozenges (one of my pain meds) so I told her I had come in to discuss just that. It seems she was getting a lot of pressure from the PCT because of the cost. A box costs £180 and lasts me 5 days and she wanted to know why I couldnt try other pain meds - I had and I had tried them all. The visit was worth it in the end because she and the other doctors all agreed to sign requests for them from me. The trouble with all the letters the gp gets from the hospital is that they don’t give all the info. I find the macmillan nurses are very helpful in liaising with the gp if I have problems. Just as well the gp practice doesn’t have to supply the herceptin & zometa.
Dawn
xx
Hi Belinda
Sorry to hear about this problem. The last thing we need is difficulty getting hold of the drugs that are keeping us as well as possible. I have always got mine via the GP - even the first prescription - as the hospital said they couldn’t prescribe them because of the cost (this was before the generic version was available so I don’t know if it’s still the same).
I hope you manage to get things sorted out.
Tournesol x
Hi and thanks Dawn and Tournesol…yes I thought of writing to my MP tonight Dawn. I’m not always very assertive but needs must. I’m at the hospital next week so will (try) and wait a few days…have also thought of changing GP’s for the future. I can see a time us ‘expensive’ patients might well end up hunting round to find a sympathetic GP to fund our treatments.
Thanks again everyone. xx
Belinda, I have the feeling that some GP’s are already reluctant to take on expensive patients. I know when we registered with our GP, we had to complete a form listing any health problems, before they took us on. At the time we were both OK, so didn’t have any problem (we have both acquired health problems since - me with the big C, and him, old crock related ailments), and I do wonder what would have happened if we had been similarly afflicted then.
Funnily enough, since my husband retired at Christmas, we have been thinking about downsizing to free up some money for travel/fun, and we have decided to stay in the area, because we doubt another GP would be prepared to take us on (also to be fair, our GP has been very helpful, and we wouldn’t want to risk going elsewhere).
In my opinion (for what it’s worth), I think the problem is that GP’s are not NHS employees, they are in effect private contractors, so they are under no obligation to take on patients, or keep them (and there have been numerous stories about GP’s gettig rid of patients on the flimsiest of grounds).
Whatever happened to the idea of cradle to the grave?
As a “bean counter” I know that for some drugs the PCT pays the hospital to supply medication. So if your GP supplies it instead then the PCT is paying twice - first to the hospital and then they also pay your GP’s prescribing bill.
It may look like a petty dispute, but this can mean thousands of pounds i.e. your GP (or other primary care services) will end up with less money to spend on everything - and now budgets are squeezed so hard this is an obvious way to recoup some cash.
Unfortunately the patient caught up in this can get forgotten about - so it is definitely worth quizzing your GP and Consultant and writing to your MP to highlight the inconvenience of this all.
Hi and thank you for the info Alice.
Hi Lemongrove, these are worrying times, all these GP changes afoot, along with the DLA changes, revamps and checks. I don’t know what happend to the idea of from cradle to grave. And I just cannot see things improving for anyone living with long term illness, disability anytime soon. And as if we need all this extra uncertainty.