Worried, Frustrated & Angry at lack of care / communication

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Hubby was diagnosed with a hiatus hernia and Barretts disease 6 weeks ago and we still do not have biopsy results despite frequent requests to the GP (who say they will take up to 8 wks) and the hospital, were we have left dozens of answer msgs. 3 visits to GP and A&E and we are still none the wiser, I have now made a complaint to PALs, the MP will be our next move as hubby has not eaten a meal since the endoscopy, being sick and in dreadful pain - physically this is taking its toll on him, he can barely get downstairs alone.  I am so worried, frustrated and angry and nobody (healthcare wise) seems to give 2 hoots.

His gastroenterology appointment is not until the end of March and they say they cannot bring it forward - the only treatment he has had is they upped his PPI to 2 a day and gave him antibiotics!!!

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  • Posted

    Sorry to hear this Sarah. Certainly the NHS moves slowly, when I was first advised to have a endoscopy I was luck and due to a private health insurance linked to work was able to have it done privately. I got good attention and they were very helpful afterwards. Last month I had to have my two year check by the NHS and the difference is marked. The follow up appointment with the specialist lasted under a minute for to be basically told all was fine and to go away for two years. Any attempt to ask questions about diet etc was dismissed. 

    ?I did make an appointment during the year with the London Gastroenterlogy Centre to speak to a Professor Lovat who is a specialist but it did cost me about £250 for an appointment. To have the endoscopy with them was around £2,000 so unless really wealthy only realistic for people with insurance. Professor Lovat is very good though and it was great to have someone listen and be interested.

    ?If you can't afford to see anyone privately then you just have to battle on but you have my sympathies. I hope your husband gets some relief soon. I know just how uncomfortable it can be.  

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  • Posted

    I'm sorry to hear your husband is still having trouble.  I'm in the U.S. and am not sure what GP, A&E, PAL's and MP stand for.  It took over three weeks to get the results of my first biopsy.  They looked at it locally and then sent it to Texas to have a couple pathologists who specialize in Barrett's look at it.  They don't want to miss something and it just seems to take time.  That being said, eight weeks sounds like a very long time.  Is he losing weight?  Can he drink enough water to stay hydrated?  Does he go to work?  If a person in the U.S. was in the situation your husband is in, we'd go to the emergency room.  There would be a good possibility that after examination the patient would be admitted for additional testing.  I'm not sure how your health system works.

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    • Posted

      Hi elaine97716

      GP is our Doctor, A&E is the emergency room PALs is the hospital complaint authority and MP is our member of parliament.

      Yes, Ian is losing weight still - with barely a yogurtand a couple of mouthfuls of soft food a day inside him, the doctor and hospital have been informed of this and have just said dont give him spicy food and 5 or 6 small meals a day!! they must think I am stupid! It's like they do not listen. He is trying to drink, although I have noticed that his fuid consumption has reduced, despite him trying - he feels sick all the time. He took early retirement after his heart attack 4 years ago, so we are living off of savings. Our emergency room just gave him antibiotics and told us to get the biopsy results.and the complaints people haven't responded at all - I was expecting at least an acknowledgement. We can't afford to go private - 

      I understand tests and biopsies can take time, but we were told, initially, about 6 days - communication would help and it wouldnt be that bad waiting for results if they actually trying to do something to help him while we waited for the results

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  • Posted

    I'm so sorry both of you are going through this.  It sounds as though you've tried about everything to get answers and as Brian said, you may have to keep at it.  Hopefully he'll start feeling well enough that he'll be able to eat a little more or at least drink fluids.  Even though my wait wasn't nearly as long as yours, they wouldn't tell me anything and I didn't get any answers about what happened until after the results came back.  Not knowing what's going on is very scary.  Let us know how things are going and I'll continue to think good thoughts for both of you.

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  • Posted

    Ian had a very bad night, throwing up, or trying to because he hasn't eaten anything substantial for so long. I have been up the Drs this morning and told them he had been laying on the bathroom floor, in agony, being sick all night and I think he has a obstructed bowel (god knows if I am right or not but his symptoms do seem to fit) they are going to see him in an hour.

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  • Posted

    So sorry he's having such a hard time.  I'm sure you'll be pushing to have him admitted to the hospital where he can be properly evaluated.  Maybe if they could watch him, they'd understand the severity of his problem.  Is it possible in your medical system to change doctors or get a second opinion?  If this were my husband, I'd be frantic and I'm sure you are.  

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  • Posted

    The GP examined Ian and she has referred him for a colonoscopy (at another hospital). She then said that she would phone the Gastroenterologist and get his appointment brought forward so we could sort out his eating - true to her word, she phoned me back within an hour with an appointment for next Wed with the Gastroenterologist and then gave me the biopsy results over the phone - all 8 biopsies showed dysplasia - Not the best news, but certainly not the worst! They will check every 3-6 months to watch for cancer cells. She gave Ian more antibiotics as she suspects infection is running riot in his bowel and kidneys. Just 10 minutes ago, I had a call from PALs apologising saying they would get back to me with another appointment - I told them that my GP had already sorted it for me.

    Although still in pain, he is feeling a little more hopeful and i have put him back to bed with pain relief and a hot water bottle

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    • Posted

      I'm pleased Sarah that at last they seem to have found out the true cause of your husband's pain which sounds really miserable and painful. Sadly with the NHS it is so hit and miss, you can either get great attention or be fobbed off as soon as possible. I hope this is the start of the way forward for your husband now.    

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    • Posted

      He has tolratedalittlefood in the last couple of days - we have asked the GP to refer us to another hospital (the smae one that dealt with his heart sugery and stroke) fingers crossed we dont have to wait long for that. We are seeing the consultant n wed (at the rubbish hospital) just so that we can get in front of a DR asap but then get transferred for any treatment he needs
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    • Posted

      I was thinking about you this morning!  Happy to hear he's able to eat more.  That should help increase his strength.  The antibiotics must be working. The varying quality of doctors and hospitals are the same in the U.S.  Sometimes they're good and other times they're not.  Hopefully, if you are able to get him in front of a better doctor at a better hospital his problem will be resolved.  If he has low grade dysphasia, monitoring is the normal treatment.  I had high grade and the treatment has been much more aggressive (mucosal resection, Nissen fundoplication and hiatal hernia surgery, and next week I'll have the first of two ablations to remove the Barrett's).

       

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    • Posted

      I am just getting in on this discussion so I'm too late to be of much help. I'm in the US so I know things are different, but I will say that in my experience no news is good news. I've had somewhere in the vicinity of 20 endoscopies. I didn't hear anything about the biopsies until 2 to 3 weeks after the procedure every time, until this last time. This time the biopsy showed cancer and I heard from the doctor two days later. Although you are in a different system, I'll bet that if cancer had been found you would have heard something sooner.

      I hope that your husband will start to feel better and start taking care of himself. I'd hate to see him turn a non-problem into a problem. Good luck to you, too. Being the care taker isn't an easy task, either.

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    • Posted

      Hi Sarah just looking through some posts and saw yours how are things going for your husband you've had a really rotten time I hope he's feeling better I know how annoying it can be when no one seems to listen to you hope alls well

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  • Posted

    Wonderful news!  Finally a doctor listened to you.  If he has high grade dysplasia, they will be able to treat it.  That's what I have and they've been aggressively treating it for the the last nine months.  If they're just going to monitor him, it sounds like it's low grade.

    Hang in there, it will get better.  My best to your husband.  Thanks for the update and keep us informed.  I continue to send good thoughts your way.

     

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