British Liver Trust

Accessing help

I am finding that my GPs are fed up with me asking for help all the time. Trouble is I have lots of health issues and lots of questions about my symptoms but they only deal with one thing at a time and get irritated if I mention anything else. I find the no of GPs in the Practice I am willing to speak with is diminishing now coz they’re so bad tempered with me. I wouldn’t care but they cannot get an overall picture as they haven’t time to listen. I went this week to see a GP and he felt I had no right to ask for an ultrasound on my liver even though my Gamma GTs were 1284 and have been over 1000 for 16 years since I was diagnosed with NASH via Biopsy. His argument was I don’t have yellowing of the eyes!!!! Am I right to feel a bit miffed?????

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Hi sorry to hear this! Finding the right GP is important. Are you able to shop around and find the right fit?

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Each medical practise has a complaints procedure. They also have to tell you that there is a complaints medical ombudsman. Your medical practise has a duty of care and should be given the chance to address your grievances. If afterwords your still not happy you can then contact the ombudsman. I hope this helps.

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Hi splodge ; sorry to hear your having a bad time .trust me my drs is exactly the same. I had to ask on more than one occasion just to request a liver function test. I have cirrhosis 10 yrs this June. Had to push to be referred to hepatologist. I am sure there is a complaints procedure. You really should not have to put up with this.drs have a duty of care..is there anyone who can go with you for extra support, my sister came with me ... they soon listened.. if you feel poorly get yourself to hospital bypass your doctor if you have to .Good luck x

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Hi

I agree

You should go straight to a and e if your drs aren't any help. Please take care. Lots of love Lynne xxxx

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Thank you all for your replies. My health issues are rather complex and involve several diagnosed problems. All I want is an up to date assessment of my current symptoms and what the future holds for me as a result of getting correct diagnoses. Is this too much to ask? For example I told the GP about my worries that the NASH may have progressed to fibrosis and he just said. Well you haven’t got yellow eyes and even if it has progressed, nothing can be done about it so there is no point pursuing an investigation!!! For my stomach he said it could be either a stomach ulcer or IBS. It can only be treated with drugs and then gave me a prescription for Omeprazole. I already had a course of Lanzaprozole which made no difference. What is his thinking? He then asked the usual cop-out question. Was I anxious. He must have thought I was an idiot. I didn’t get chance to tell him I have a growing ulcer on my tongue which is killing me and the pain is now spreading to my neck. He dismissed the red flag cue that I feel full after one mouthful of food, can’t eat properly and have begun to lose a lot of weight. Am I right to be annoyed with him?????

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I'd say you definitely need follow up Splodge and if these are the types of things this doctor has said to you he shouldn't be practising.

Saying something 'could be' a stomach ulcer or IBS without investigation and handing you pills is useless ... it could also be other issues - possibly liver related too. NASH is the more aggressive form of fatty liver disease and if it hasn't been reversing in all the years you've had the diagnosis for it could well have progressed .... the yellow eyes comment is ridiculous. My husband has full on cirrhosis of the liver but apart from his initial hospitalisation in 2012 he has never had yellow eyes or jaundice (even when listed for transplant).

Whilst you might not have yellow eyes your condition could well have progressed and without investigation via a quick scan no one knows. When a patient has cirrhosis they have to have an ultrasound every 6 months & whilst you might not have that you don't know if there has been any major change in your liver either.

I take it despite your diagnosis with this liver condition you were never referred to a liver specialist or even gastroenterologist?

As you say you have a complex list of other health conditions - are you seeing a hospital specialist for any of the other things? If you were I would request that one of them refers you to a gastro specialist at least.

Your care needs to be better co-ordinated than it is. I wonder if a letter to the practice manager at your GP surgery might push things along better - a letter can be used to hold them to account if further down the line things were to go 'pear shaped' and they might not want to take that risk.

Hope you get some movement soon, you've got some symptoms there that I would be concerned about if they are going unexplored.

Let us know how you get on.

Katie

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Thank you Katie. I do intend to write a couple of letters to move this on. I once wrote a letter of complaint to the Practice Manager about one of the other doctors in the practice. All that happened was that the GP I wrote about answered my letter and in a quite patronising manner, justified his actions and ‘put me in my place’!!!!! The Practice Manager never replied. It was a complete waste of time. I feel, rightly or wrongly, that I have something wrong with me that is currently undiagnosed. I need a diagnosis so I can move forward. The GPS won’t help me. I’m going to try the next level, the Gastro Consultant, to whom I have been referred by the Diabetes Consultant.. I saw this Gastrointestinal man several years ago, but he discharged me as nothing had changed for a long time, despite my LFTs being notoriously high at the time. Should I ask him for a PET scan? I’m told it is more useful than Ultrasound? I’m feeling quite disgruntled to say the least.

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Hi

When did you last have your blood tests done and were they all the ones to test liver and kidney function? I would also ask for a referral to a hepatologist to ensure the nash hasn't deteriorated. Also you could ask for a referral for an endoscopy to check for problems down the oesophagus as you have the issue with you tongue and stomach they may or may not be linked to your liver.

Basically if I was you i would write a list of my symptoms in one column. Next to it i would write how it affects me e.g. Pain, frequency of going toilet issues with the loo, bloated feeling, tiredness etcetera. If necessary look up website s like info on liver disease by the British liver trust, diabetes uk, nhs uk for ibs etcetera to help you clarify your symptoms. I would keep a copy and just give it to the doctor. I would say I have written them down to make it easier for the doctor and because I am worried they are all linked. In fact I would do this before asking for a second opinion to give them a chance. Then if I got the brush-off ask for the referral.

Best of luck

Gx

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Yeh! Great idea, I would go straight to a &e and tell them your not feeling well and they will do blood tests u might get a scan I don't know. Taking someone with you to your doctors may help too.

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Yes ..as i stated in my earlier post.. bypass this incompetent GP and go straight to A&E ..x

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No as I'm getting same shit no help to get help multiple health and mental health no help no friends family the system is they no to give me double appointment and still it's only one illness so me arthritis is left ,I no exactly the feeling it horrible

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hi I have been sick 2 years I knew it was gi tract problem as I had some of the symptons ongoing for years and even had my gallbladder out 20 years ago. I knew it was my liver. got referred to a gp who I saw 3 times and didn't like answering questions a lot or was adiment on not doing the tests I know I needed done and only wanting to deal with one issue at a time and it was taking along time to get anything properly done with that gi and I got frustrated cause I was getting sicker and she wasn't listening to me. I fired that gi. fought the ahs and got a referral put in for a second opionion with a new gi dr. it was a bit of a battle but I finally got a new gi and he listened and he was caring and he answered all my questions and got me in for my colonoscopy and got a liver surgeon to do my eui to look at the liver and ducts etc. I go in feb which im guessing with finally give me the diagnosis and treatment fnally after 3 years of fighting to get the drs and the treatment I deserve. some drs think they know best and wont sway from what they know so if you are feeling good about the gi always ask for a second referral to be done you have the right for fight for your well being

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I have no yellowing of the skin or eyes as of yet and even though I had every other sympton on the list the gp wouldn't think to send me to a liver dr just because I had no yellowing yet. im not the type of person who is going to sit around and wait for the liver numbers to get so high that the yellowing has a chance to catch up to me. I want the liver treated before its to late for me. I push and push and fight doctors for 2 years. fired 4 specialists because they couldn't figure things out fast enough contacted their bosses and then ahs and pushed to be treated right and figured out without wasting all time, got all new second set of specialist and now I finally have drs who listen and take time with me and seem like they don't fall into the category and I am finally getting the tests I need and the time I need from the drs and im getting my diagnosis and treatement. but believe me it was a battle at every end for 3 years.

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Hi Splodge, I am new to this site and have only just read your post. I am in a very similar situation to you with having many different health issues. I have had NAFLD for over 8 years now and due to a lot of other health issues/symptoms including heart failure, high blood pressure, cardiomyopathy, hypothyroidism/autoimmune Hashimoto's, sleep apnea, high Vitamin B12 and high uric acid, which may be linked to my liver. I was worried it had developed into NASH or even cirrhosis but several GPs at my practice refused to refer me for a biopsy or further tests. I finally saw a more understanding GP a few months ago who referred me to a General Consultant at my local hospital. I has horrified when I got my appointment letter to find out he is a consultant at the Geriatric clinic as I am not even of pension age and I thought the appointment would be pointless. I saw the doctor just before Christmas and found out that these doctors at these Geriatric clinics are very good at looking at all the symptoms and conditions and piecing together what is wrong. This doctor actually spent over an hour with me listening and asking questions (something no other doctor or consultant has ever done) and he also did lots of blood and urine tests. I am now waiting for the results and feel confident he will get to the bottom of what is wrong. I can understand how you feel as I felt the same, the frustration and feeling you are hitting your head on a brick wall. Do have one more try. Go back and ask to be referred to a General Consultant at your local hospital so they can look at all the symptoms and conditions and hopefully find out exactly what is causing you to feel unwell. If that doesn't work perhaps you can change doctors or put in a complaint through PALS.

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