Waiting list for operation too long. In almost constant pain.

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I am on a six to nine month waiting list for a laparoscopic cholecystectomy under general anaesthetic as day surgery. I am in almost constant discomfort/pain and I do not know how I can cope for this long. I have some cocodamol for the pain, which I take when my pain is too bad, but that really makes me feel fuzzy and ill. I just went to see my GP and he has prescribed Biscopan and Codeine, and suggested I ring a private hospital to get a quote for surgery privately. Rang the Parkway and they quoted £5406 for a two night stay, and they also said there is no way they would do this op as day surgery. Well, there is no way I can afford that, so it looks like a long wait. My GP said I should expect the wait could be longer than nine months. So frustrating. Any suggestions?

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  • Posted

    Hi, its awful isn't it when you're in so much pain. I suggest if you get really bad go to a&e and hopefully they'll pass this onto your consultant and hopefully get you in sooner.

    I did the same as you, looking at prices for private treatment and it was a similar price and they give you 6 months aftercare. I couldn't afford it either so had to wait.

    Generally it should be 18 weeks from your first referral from your gp.

    Just keep going back to your gp and to a&e and hopefully they'll push you up the queue.

    Let me know how you get on. Take care. x

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    • Posted

      I heard that the 18 week time frame has gone now, due to NHS cutbacks, so there is no time limit now. One thing that really concerns me is that on the NHS the procedure is Day Surgery, in in the morning and out later the same day, yet privately they wouldn't consider day surgery for this operation. Worries me somewhat.

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    • Posted

      Hi Lynne, not as far as I know. As I've just had an appointment through with the information that they need to see people within 18 weeks. Even in January when I saw the consultant and his nurse said to me there's an 18 week time frame from the first referral which I had gone past due to all the tests, so I had mine out at the next available time which was March.

      That might just be  that they can operate later on in the day if they're keeping you in overnight plus the fact that you'd be paying for that type of care. I was perfectly fine coming home the same day and they won't let you go home unless they feel you're ready to go. My operation was performed at 11am  with no complications and I didn't leave until after 6.30pm because I was feeling sick with all the meds but others are fine within a couple of hours. Its very common all around the world as a day case.

      I wouldn't worry its just different hospitals and private versus nhs. 

      Keep chasing and if the pain get worse keep on at your gp, the surgeon's secretary, and go to a&e if it gets unbearable to cope with and that should push you up the queue.

      Let me know how you get on. x

       

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    • Posted

      I think it was announced on March that they are scrapping the 18 week waiting list for non urgent operations. Saw this in The a guardian online:

      NHS 'waving white flag' as it axes 18-week waiting time operation target

      New plan abandons target for hospitals to carry out 92% of non-urgent operations within 18 weeks and cuts surgery of ‘limited clinical value’

      Oh well. Will just have to keep on and see. Thanks.

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    • Posted

      then I suggest keep going back to your gp so that they make you more of an urgent case especially if you're in pain all the time. I suppose it depends what they call non urgent. If you're in constant pain then you're  at a higher urgency than someone who only has sporadic pain.

      Keep me informed of your progress xx

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  • Posted

    Hi, it is really frustrating. I'm waiting to see a surgeon and that's taking months already. I found taking paracetamol and buscopan on a regular basis and then codeine quite often at night helps keep it partly under control. The other thing I've done is almost completely cut fat out of my diet, this is the thing that makes the most difference. It's hard to keep my weight up though. I think for me it's keeping the painkiller and buscopan constant and diet. It's very tiring. Keep phoning about the appointment as well, my GP told me I had to be my own advocate so keep asking if there's cancellations etc. Good luck and take care.

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  • Posted

    I know khow you feel, I was refered in October and only saw the surgeon a week or so ago, luckily he said priority and must be done within 90 days and I just got my pre op date for 11th June. Its been a long wait. I havent been in intense pain but had other chronic symptoms.
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  • Posted

    Hello, my husband is just like you and he has been waiting quite a while too. He is always in discomfort with continual bloating and pain. What we have found from trial and error is that it is best to steer clear of anything with codeine in it as it tends to irritate and the fact also that they don't touch the pain anyway. The Buscopan, some paracetamol and a hot water bottle did however seem to help. I know this is probably a bit difficult in this day and age but keep your stress levels down and go ont you tube for some mindfulness meditation music. Do that whilst lay down with a hot bot and I am sure you will feel a little better. Try oat milk also instead of dairy, it tastes really good.

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  • Posted

    Yes, I should have mentioned mindfulness too, started using an app and it has helped. Just that ten minutes of quiet a day and some of the techniques to use when the pain kicks in.
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  • Posted

    I understood that there is an 18 week wait maximum from the date of referral to treatment. I thought this was a legal time limit? I was referred in September 2016 and had an open cholecystectomy at the start of February 2017, just over the 18 weeks limit.

    You could complain to your local hospital PALS service which is an advocate for the patient explaining how much pain you're in. Also you could visit A&E when you are in pain and hope they will bring forward your surgery or get another referral to the hospital from your GP. Might even be worth phoning your consultants secretary and explaining how badly this is affecting your life.

    You have my sympathy as I was in pain even though I stuck religiously to a low fat diet whilst I was waiting. I was also extremely tired all the time and had no appetite at all. I lost two stones in weight- even lost weight over the Christmas period.

    Nobody should have to wait this long if they are in pain and waiting is also risky. The gallbladder can perforate risking peritonitis. I was badly jaundiced at one stage and at risk of sepsis. I ended up having to have a liver resection a month after the cholecystectomy due to the labs finding a small growth in my gallbladder when it was removed. I dread to think what might have happened had I had to wait longer. As it is I will be monitored for at least five years. This is rare but obviously can happen.

    You need to keep pressure on the hospital- they will assume you're managing ok otherwise.

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    • Posted

      I was told that the 18 week limit has gone and that due to cutbacks there are no deadlines now. I will try calling the hospital, as I cannot wait that long. My quality of life has really deteriorated as I feel ill all the time.

      Hope your health continues to improve with no more complications.

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    • Posted

      maybe that depends on the country?, here it depends on catagory your put in, I was put on cat 3 as my Dr didnt put all my symptoms and my wait could be upto a yr from referal just to see the surgeon, i waited from october to May, however during this time I visited the hospital and had another dr refer me and was placed as cat 1, highest and saw the gastro and had cameras before the date even came for the surgical referal appointment! Luckily surgery placed me in the highest catagory after medical emergency so I am now having to be done within 90 days.
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