medication for chronic pain being withheld

edited 14 March 2021 at 5:58AM in Disability money matters
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meadowgrassmeadowgrass Forumite
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edited 14 March 2021 at 5:58AM in Disability money matters
Hello :-)

I apologise if this post may be a bit long. Will try best to summarise. If I've posted in the wrong section, please let me know and I can re-post in the right place.

Having very difficult time with gp surgery. Disabled, housebound, highest PIP (both) and support group ESA. No people who can help about medication. V severe hip arthritis, also back/thumbs/neck issues. Not able to get to pain clinic, and can only shore up any formal prescription with 2 weak-dose packs of ibuprofen when shop at tesco. Tried other medications over years, but bad reactions, so am left with taking max ibuprofen (up to 8x400mg daily, especially when back worse) plus a 5mg butec patch ... unable to take higher, as v bad mental health reaction on 10mg. No issues with taking ibuprofen at all, and have lanzaprazole alongside. Hardly any and not good gp input, plus nhs abuses before this gp surgery, but at least could previously trust there'd be a baseline of the ibuprofen/lanzaprazole and now also patch, to be able to function.

March 2020 prescriptions review: lady very determined to reduce ibuprofen from 224 had been on for years, down to 168, despite me repeatedly saying cannot manage. Afterwards, noticed systmonline notes wrong; written as dose is half what she had said would issue. Called up but she said not to worry, 158 ibuprofen being sent anyway. This is having some effect on how badly things are going now. Have had no option but to switch to ordering on first day possible, as keep running out, especially with worse back pain this year.  Also had to ask about 5mg butec, having tried it previously, and bad reaction to 10mg, to try to compensate for drop in ibuprofen.

This year, from March 9th ... pillar to post, told different things by each person e.g. write systmonline note asking to reauthorize and will be fine; gp surgery then says ibuprofen not reduced or increased, but it turns out had issued 21 pills, not 158, which arrived yesterday. Some saying must talk to gp, latest saying must do so but then said not necessary. One gave email to do prescription request, after me saying econsult not work well. Emailed at lunchtime yesterday; no reply, but today, when forwarded the message again, as requested by prescriptions staff speaking with, message went straight through ... in message I'd asked if need to leave phone on for gp call, and had done that all day, but no response or call.
Today see that systmonline notes say 21 ibuprofen a month, so I called again; they said just doing what's on notes. Said gp said I must get ibuprofen over the counter [housebound] and am on 2x more than should be. I got extremely distressed. Woman said if refuse gp callback must speak with script clerk. I didn't refuse, saying I'd call tomorrow to speak to gp, but script clerk called me, saying it's my responsibility to book a gp call, and that possibly gp doesn't know I'm housebound (3 phone calls with this gp over last year or so, but seemed like records not looked at, as I needed to explain full health each time).
She said 21 ibuprofen have been issued to arrive tomorrow, for weekend, but systmonline does not show them as issued. She pushed me to pre-book Monday call with practice pharmacist (that dropped down ibuprofen prescription last year), saying I'd most likely not get through tomorrow, and same-day urgent appointment not likely anyway.

Very clearly being deliberately messed about. Very distressing, and not sure who to contact. Have looked around a bit, but have had some problems before when try to make complaints ... would seem best to first communicate with gp surgery manager, but nothing on gp surgery site about complaints, and, otherwise, would be very grateful for advice.


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Replies

  • Savvy_SueSavvy_Sue Forumite
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    For the immediate problem of OTC drugs, it would surprise me if your local authority didn't have a Covid helpline you could ring to ask for some to be brought to you, perhaps with any shopping you need. Alternatively you could order from an online pharmacy, in larger quantities than you can buy in a supermarket. 

    Is there an obvious support group for any of your conditions? eg there are several Arthritis charities I can find. You might be able to contact someone to act as your advocate. 
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  • meadowgrassmeadowgrass Forumite
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    Hello Savvy_Sue and much appreciate your response. Sorry if I didn't make it clear that it's the online pharmacy part that I use (systmonline); have used that for a lot of years, with being housebound. I don't know anything about local help, and will keep looking round (although I'd much prefer to know anywhere people had a good experience), but it's really being able to receive stable main medications via gp surgery/systmonline that's seriously concerning me.
  • Spoonie_TurtleSpoonie_Turtle Forumite
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    Hello Savvy_Sue and much appreciate your response. Sorry if I didn't make it clear that it's the online pharmacy part that I use (systmonline); have used that for a lot of years, with being housebound. I don't know anything about local help, and will keep looking round (although I'd much prefer to know anywhere people had a good experience), but it's really being able to receive stable main medications via gp surgery/systmonline that's seriously concerning me.
    SystmOnline is only a service for ordering prescriptions and sort of going through your GP.  They are not a pharmacy themselves.  Online pharmacies have their own separate websites where you can buy things.  I know it doesn't solve your problem (and it's frustrating to have to pay for something on top of your prescriptions) but it might be a stopgap to help you function a bit better until you can get the prescription problems sorted.  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.
  • Alice_HoltAlice_Holt Forumite
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    Alice Holt Forest situated some 4 miles south of Farnham forms the most northerly gateway to the South Downs National Park.
  • meadowgrassmeadowgrass Forumite
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    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.

  • edited 11 March 2021 at 10:24PM
    meadowgrassmeadowgrass Forumite
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    edited 11 March 2021 at 10:24PM
    Hi Alice_Holt and much appreciate response. Unfortunately PALS is another place I'd not approach; complaint upheld regarding them a lot of years ago, so probably different staff by now, but thank you very much for link, and to Healthwatch ... will take a look.
    EDIT: can see already that there are clear grounds for complaint ... incorrect treatment, unreasonable delay in diagnosis or treatment, GP ignores important symptoms, bad communication, GP doesn’t provide appropriate pain relief, behaviour of staff at your GP surgery, errors in medical records, and the risk that clinical negligence results in personal injury. Thanks again for the link. Will definitely look into this further.
  • sherambersheramber Forumite
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    Most GPs are not emplyed by NHS.  They have a contract to provide services for the NHS.
    So a complaint to NHS  would not be appropriate.
    A GP is responsible for  the running of his practice.

  • meadowgrassmeadowgrass Forumite
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    Appreciate your response, sheramber. I'm seeing similar reference on the Healthwatch site, but I think I'll need to contact them to clarify things. I'm going to call the surgery tomorrow to ask how I can complain to the practice manager via email, as it's about the GP and various staff involved, so maybe the practice manager co-ordinates the various employees? Hopefully contacting the practice manager may be enough to clear this up, but I'll have to see what they say tomorrow.
  • Savvy_SueSavvy_Sue Forumite
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    I don't know if this link will work, but I've looked at one of the online pharmacies where I saw ibuprofen, and these are the questions you'd be asked. You're not asked for a prescription, although you are asked about other medicines you take. 
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  • meadowgrassmeadowgrass Forumite
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    Thanks Savvy_Sue! Will take a look at it. Much appreciate.
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