medication for chronic pain being withheld

Spoonie_Turtle

meadowgrass said:

I could link a couple of online phramacies as examples if you want, but I can't recommend any because I've not used any particularly.
I wish I had some advice for trying to sort out the problems with your prescriptions but I have no idea.  This debacle is absolutely grounds for a complaint to the relevant body but I don't even know who that would be, unfortunately, nor whether any complaint would actually get things moving for you.  If you post over on the Health and Beauty board there might be some posters there who could point you in the right direction.

Hello Spoonie_Turtle and much appreciate your response. Thank you for offering links. I'm not sure, as I've been looking at online pharmacies during this year, but seen that they want a script from gp surgery?, or the ones I was looking at weren't the right ones? If there is a way to buy some online stop-gap ibuprofen without prescription, that would be a great help.

Yes, the more I sit and attempt to recover, the more clear I am about a complaint being necessary, and concerned about that. Had a very bad journey with NHS Complaints in the past, despite upheld, but will post over on the Health and Beauty board for sure ... thanks for linking me there.

Oh I see, I didn't think of that.

This one literally asks you to declare a few things (e.g. have read the info, not taking any other NSAIDs, not pregnant/breastfeeding, etc.) https://www.weldricks.co.uk/search?query=ibuprofen 400mg - surprisingly the 48s work out cheaper than the 84s

This one is more expensive and asks you to list conditions, other meds etc. https://www.travelpharm.com/medicines-c143/pain-relief-c146/ibuprofen-400mg-tablets-p10375
Ditto here https://www.theindependentpharmacy.co.uk/search?query=ibuprofen+400mg
And here https://www.pharmacyfirst.co.uk/ibuprofen-400mg-84-tablets-nurofen-substitute-ibui148858968.html
These take you through a chat with the questions
https://www.chemist-4-u.com/catalogsearch/result/?q=ibuprofen+400mg
This one has a declaration but no room to detail other medication? https://www.simpleonlinepharmacy.co.uk/browse/q-ibuprofen/q-400mg/

That's not an extensive search but the Weldricks seems to be about the cheapest I've seen so far to be honest.

meadowgrass

Spoonie_Turtle said:

This one literally asks you to declare a few things (e.g. have read the info, not taking any other NSAIDs, not pregnant/breastfeeding, etc.) https://www.weldricks.co.uk/search?query=ibuprofen 400mg - surprisingly the 48s work out cheaper than the 84s

This one is more expensive and asks you to list conditions, other meds etc. https://www.travelpharm.com/medicines-c143/pain-relief-c146/ibuprofen-400mg-tablets-p10375
Ditto here https://www.theindependentpharmacy.co.uk/search?query=ibuprofen+400mg
And here https://www.pharmacyfirst.co.uk/ibuprofen-400mg-84-tablets-nurofen-substitute-ibui148858968.html
These take you through a chat with the questions
https://www.chemist-4-u.com/catalogsearch/result/?q=ibuprofen+400mg
This one has a declaration but no room to detail other medication? https://www.simpleonlinepharmacy.co.uk/browse/q-ibuprofen/q-400mg/

That's not an extensive search but the Weldricks seems to be about the cheapest I've seen so far to be honest.

Thanks so much Spoonie_Turtle. Will certainly look these up. Much appreciate.

meadowgrass

Just to add that last night I checked systmonline and they've deliberately entered notes saying the other 5 items cannot be ordered for another 6 weeks (on April 1st, of all days), despite lanzaprazole needing ordering after 28 days (vital that take this with pain killer) and butec patch needing ordering after 30 days. I sent a message to Healthwatch, finally prompted by seeing about this, as that's an even more deliberate withholding of medication. Hope to hear back from them soon.

EDIT: sorry, just to edit this, as i got the dates wrong ... it does say April 1st, but that's not 6 weeks ... too much stress, so have taken some time away to recover, before writing to practice manager.

Spoonie_Turtle

meadowgrass said:

Spoonie_Turtle said:

This one literally asks you to declare a few things (e.g. have read the info, not taking any other NSAIDs, not pregnant/breastfeeding, etc.) https://www.weldricks.co.uk/search?query=ibuprofen 400mg - surprisingly the 48s work out cheaper than the 84s

This one is more expensive and asks you to list conditions, other meds etc. https://www.travelpharm.com/medicines-c143/pain-relief-c146/ibuprofen-400mg-tablets-p10375
Ditto here https://www.theindependentpharmacy.co.uk/search?query=ibuprofen+400mg
And here https://www.pharmacyfirst.co.uk/ibuprofen-400mg-84-tablets-nurofen-substitute-ibui148858968.html
These take you through a chat with the questions
https://www.chemist-4-u.com/catalogsearch/result/?q=ibuprofen+400mg
This one has a declaration but no room to detail other medication? https://www.simpleonlinepharmacy.co.uk/browse/q-ibuprofen/q-400mg/

That's not an extensive search but the Weldricks seems to be about the cheapest I've seen so far to be honest.

Thanks so much Spoonie_Turtle. Will certainly look these up. Much appreciate.

You're welcome, I really hope at least one of them turns out to be an option and not too good to be true (and I hope you can get some that's not too expensive as well!).

meadowgrass said:

Just to add that last night I checked systmonline and they've deliberately entered notes saying the other 5 items cannot be ordered for another 6 weeks (on April 1st, of all days), despite lanzaprazole needing ordering after 28 days (vital that take this with pain killer) and butec patch needing ordering after 30 days. I sent a message to Healthwatch, finally prompted by seeing about this, as that's an even more deliberate withholding of medication. Hope to hear back from them soon.

It just gets worse and worse.  Absolutely unbelievable that they are doing this.  I fervently hope you can get something sorted.

meadowgrass

Thanks Spoonie_Turtle, and really appreciate links. I've so far looked at two, and they're looking good ... trustpilot reviews are helpful too. I think the independentpharmacy one had the best reviews so far, and easier delivery, but will continue to look through them over the weekend.
Thanks so much for well wishes too. Even now, when calling the reception to ask for the practice manager's email, they said to just use the generic and they'll forward it ... no generic email anywhere on the site, just a comments form ... when I download the Complaints PDF, it states an email to the practice manager IS available ... I have to call up again to ask for it, and the (same) girl had the number right there, without even needing to take time to search for it ... so deliberately awkward.
Motto is to stay away, lol, as much as possible ... far better for health! Hope you have a much much better gp surgery.

heatherw_01

Hey,
I also have severe chronic pain and other chronic illnesses and am also pretty much housebound other than for medical appointments.
Had mine over 20 years and no doctor wanted to give me much at all.
The pain got much worse in the last 4 years to the point I was bedbound at a point for a while with horrific unbearable pain where I couldn't move or sleep. This was the only time the doctors wanted to give me anything for my pain after all this time.
I am on much stronger medications, it doesn't stop the pain but makes it not 10/10 all the time, but I have experienced the same where doctors will want to take you off the meds!
My gp was the only one out of about 20 or so that would give me strong painkillers and everyone else still wants me off them.
(apologies for this part but it is true) They would rather me want to feel like I want to die with horrific pain, laid in bed 24/7 screaming with pain than give me these painkillers. As that is how bad it is without them.


Sadly they don't like people on painkillers for a long time which is ridiculous because they don't know what your pain is like!

I would try to get another doctor as it took me a decades to find one that understands as sadly MOST don't understand!
You might find another that understands better.

I would try PALS too as previously mentioned although they often don't find an issue as doctors can take people off painkillers if they have been on a long time as per ridiculous NICE guidance. Not saying they won't help you though, it is definitely worth trying!

KxMx

Most Hospital appointments now are via phone or video call... Might this open up a referral to the Pain Clinic being useful? 

meadowgrass

heatherw_01 said:

Hey,
I also have severe chronic pain and other chronic illnesses and am also pretty much housebound other than for medical appointments.
The pain got much worse in the last 4 years to the point I was bedbound at a point for a while with horrific unbearable pain where I couldn't move or sleep. This was the only time the doctors wanted to give me anything for my pain after all this time.
I am on much stronger medications, it doesn't stop the pain but makes it not 10/10 all the time, but I have experienced the same where doctors will want to take you off the meds!
(apologies for this part but it is true) They would rather me want to feel like I want to die with horrific pain, laid in bed 24/7 screaming with pain than give me these painkillers. As that is how bad it is without them.

I would try to get another doctor as it took me a decades to find one that understands as sadly MOST don't understand!
You might find another that understands better.

I would try PALS too as previously mentioned although they often don't find an issue as doctors can take people off painkillers if they have been on a long time as per ridiculous NICE guidance. Not saying they won't help you though, it is definitely worth trying!

Hi heatherw_01 and sorry to hear about chronic pain/ill health and that you've had difficulties with GPs and pain relief also. Bouts of same worse pain and needing to be in bed more too, and I fully understand it can make you feel very low indeed. Good that you found a good doctor. Not aware of NICE guidance, but it sounds deliberately cruel rather than nice!  I've seen that there's guidance about reducing opioids, in USA and UK, while searching for advice, but medicine being reduced/withheld isn't an opioid. Will certainly look into changing GP, so thank you for advising that.
EDIT: have found this link ... https://www.nice.org.uk/ ... but there's no clear 'about' I'm seeing yet, and overall a very complex unclear site, but will try to take a better look at it later.

meadowgrass

KxMx said:

Most Hospital appointments now are via phone or video call... Might this open up a referral to the Pain Clinic being useful? 

Thanks for your message KxMx. Tbh I prefer to stay away from hospital involvement, partly due to how bad things are on a gp surgery level already. Am housebound so unable to get to a hospital or the pain clinic anyway. Unfortunately there's not been a further response when I've said in the past that I can't attend the pain clinic.

meadowgrass

Healthwatch replied and said that approaching practice manager is best to do first. They can't act on individual cases, but advise making a formal complaint, with ICAS support, if contact with practice manager doesn't resolve things. They also included a CAB link regarding complaints about GPs.