I have just got a telephone appointment letter with the consultant almost a year to the date of my biopsy (26/05/22) which confirmed Compensated Cirrhosis and cysts (diagnosis letter received 07/08/21). Since this diagnosis (by letter) I have not received any other medical intervention from the consultant or GP to discuss the condition. I visited my GP twice for an unrelated (maybe) condition (chronic back and muscle pain) and raised the issue and she stated she would contact the consultant (back in early January).
I have looked at the NICE guidelines and see that they have not been followed e.g. no discussion of the condition or its management, no indication of MELD score, no 6 monthly ultrasound, no endoscopy, no further bloods etc. Luckily, due to my profession, i'm used to research and interpreting results etc. but would really feel for those in a similar position without these skills. Therefore I am considering making a complaint to try to make sure that the process is followed for myself others. I do not want compensation, just to be given the best chance, which must include periodic monitoring of the condition?
Anyway I do not know who to make the complaint about, is it the responsibility of the referring GP or the consultant? I'd assumed that the consultant gave the diagnosis and then the GP was to manage, but have read others having liver nurse consultations etc. Any clarification would be useful. I will be having this discussion with the consultant at the end of May, but want my facts correct.
Just as an aside, it is nigh on impossible to get through to my GP on the phone, it took 3 months to get the appointment for my back.
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Just to highlight different scenarios I have encountered, which makes answering this question quite difficult. Went to A and E, was referred to another hospital for a problem unrelated to my liver issues. Had monitoring and finally a letter saying my case would be discussed by MDT. No follow-up happened, despite calls and emails to the secretary. Further monitoring was managed by GP, which was two fold. Scans and bloods. Scans reached Consultant, bloods did not. 8 months after inital referral had a call from secretary (after yet another reminder from us), which finally resulted in call from Consultant. Explanation for delay- MDT discussion was not picked up by IT system and no explanation as to why bloods were not received. GP did not call to discuss any of the results- I booked appointment. Consultant had dictated letter as follow-up, but this was not done- no explanation for this. Who do we complain to ensure others don't go through this? No idea. Consultant acknowledges department is at fault, but doesn't know how this has happened.
After much persistence, I finally get my Hep to agree to a treatment that needs to be done at local hospital. GP gets referral and makes it. I don't get expected letter for treatment, so contact GP again. Am assured that referral has gone through, so now I have to ask where has it gone to. It hasn't gone to Consultant's secretary as expected, it has gone into a referral system to be dealt with by someone who deals with referrals for all departments. On enquiry to this department, it transpires emails going back 6 months have not been dealt with. We contact Consultant's secretary, who contacts this referral department herself and get referral transferred over, Appointment arrives promptly within the week. Without finding out where the referral went to, we would never have had the appointment. Evry hospital and department in the NHS has their own system and many of them are not very efficient. Sorry to not give a direct answer, but I just wanted to highlight a couple of situations I have been in myself (there are many others).
Basically if you cannot manage your own health and follow things up, you can be likely to fall through the cracks with some departments. In some cases people are not doing their job, but in others the road to answers is so twisted and forked, you need to be Sherlock Holmes to get the results you need.
Good luck getting answers- it is really deflating when you have to work so hard to deal with the system, but I like your approach of trying to fix it for others, since I am of the same opinion.
As you say i'm not sure it will get me anywhere, but if you don't try you don't know, I will wait till i've had chance to discuss with the consultant as there may be a valid reason. It seems a postcode lottery as to the level of care you get 👍
I agree- you have to try. However, there is a lot to go through to get to the bottom of where it has gone wrong. I had a text from a receptionist at my GP detailing results from a cancer screening. The information given did not fit the guided outcomes. When I queried it, the doctor didn't listen and sent me an email to the NHS website, which I had already read (I was telling them that was how I knew the text was incorrect). When I contacted them again, I was told the text was a follow-up to a letter. I never received any such letter. They seemed shocked, but insisted that the text had come from an outside source.
A week later I received the letter, worded correctly. I then raised a complaint with the GP making it clear I wanted this to be solved in such a way that no-one else had to go through what I had been through. The complaint went to the practice manager, who contacted me weeks later saying that the text was not generated by the practice. I sent them a copy of the text (which had their details attached) and it was then investigated.
Manager finally got back to me and they acknowledged that the text had come from them, but had not been logged (hence the initial denial). The member of staff involved had had it explained to them why this type of information was inappropriate for a text and the team were also spoken to. The manager's response was very thorough and encouraged me to contact them if further issues arose.
I did get a good response (and for brevity, I have cut out a lot of detail), but I had to be very determined in my approach as well as patient. Making sure I had all my facts checked and evidence definitely helped. Biting your tongue also helps. Keep going, but be prepared to sleuth it out!!!
Diagnosis letter 7 months agoFollow up appointment letter received now (7 months later) that's very close to the guidelines so given the pressure hospitals are under theres nothing much to complain about!
During the telephone appointment the consultant would probably order bloods and a scan.
Even face to face a Dr just reads out results, no examination needed once diagnosed.
Firstly, the follow up (26/05/22) is almost 10 months after diagnosis (07/08/21), which was 6 weeks after the biopsy. Secondly, the guidelines state that you should receive an offer of endoscopy on diagnosis to assess the likelihood of varices / bleeds (not happened) and every six months should have a ultrasound & bloods due to the cancer risk (not happened). On diagnosis a care plan should be discussed (diet, exercise etc.) (not happened). Thirdly, you can go from compensated to decompensated over night, especially if their are other comorbidities involved, however the likelihood of this happening is reduced if the condition is being monitored. Being told via letter you have a life threatening disease and then not being given any further information as to the stage it's at or treatment, is not good service or care, again I consider myself to be lucky I am scientifically minded. Surely preventing the liver disease progression and / or decompensating is much better than waiting until it just happens.
You are quite right to expect the correct level of care, especially if variceal bleeds are a risk. Unfortunately getting the correct care, even when you are at a centre of excellence, can be inconsistent. Generally though, u/s and endoscopies are offerred this frequently if the liver disease is advanced. When I was first diagnosed many moons ago, I was never told staging for many years, so portal hypertension came as a shock. I'd never heard of it. A care plan should be discussed, but I didn't get any dietary advice until years after my first decompensation and I have never had exercise advice. Be prepared to ask. I sincerely wish you all the very best with this liver journey. And remember, very often" if you don't ask, you don't get". I do a lot of research, but that doesn't mean you won't meet resistance. Good luck.
Sometimes you have to be your own advocate and do a bit of chasing, if you had the consultants letter and time was passing by with no contact i'd have been tempted to write a letter detailing your queries. Even with Covid 19 situation my hubby has been getting his 6 monthly ultrasounds, bloods and annual endoscopy though hadn't had a face to face consultation since June 2019 with his main liver doctor. He got his tests because I have consultants secretaries details and I send a wee gentle reminder or merely ask if tests have been booked etc.
The squeaky wheel gets attention, we arn't pushy or complaining but do push to make sure hubby gets tests etc. timeously.
Maybe you should write a letter now, acknowledging that you are booked for a telephone appointment in May BUT asking the questions like "with a diagnosis I am aware that the NICE guidelines stipulate the minimum level of monitoring is a 6 monthly scan, 6 monthly bloods and to date I haven't had any of these following my diagnosis x months ago".
At the back end of last year I injured my knee, I left it a while to see if it would correct but when it didn't I went to GP, he made an urgent referral to orthopaedics and I was there the next week, they then felt I needed an urgent MRI which I again had within a week (November). Into January I had heard nothing more and up to then everything had been treated as 'urgent' .......... so I wrote to the surgeon listed on the earlier letter i'd had and it turned out he'd moved on (to Australia) and no one had actually reviewed my MRI. This new surgeon who picked up my letter actually fit me into a clinic the same day and within a week I had knee surgery.
SOMETIME YOU HAVE TO GENTLY ASK THE QUESTIONS. Especially when you have looked up and are aware of the guidelines.
I wrote a letter for hubby when he was supposed to being referred to Transplant Unit (Jan 2013), by June that same year we hadn't heard anything and when I wrote and checked it turned out doctor had gone off sick and referral was never done - again writing the letter got us referred to Edinburgh within a couple of weeks.
No good talking of complaints. Like I say sometimes it's about taking care of your own care and being your own advocate.
I don't know if all trusts work the same, but in my case after my GP referred me then everything else has been down to my consultant. The cons arranges my ultrasounds, endoscopies, tests and appointments. One off meds he prescribes, but anything that needs to be ongoing he instructs my GP to add to repeats. Cons arranges blood tests unless I've recently had one when 6 monthlies are due (as GP checks the lot no matter why I needed a blood test).
It sounds like you've had poor treatment. If you know your consultant's name you could ring the hospital and ask for their secretary or a liver nurse to say you are concerned as you've not had any monitoring. I hope things improve for you.
I agree with Kate. Your best “friend” in this situation is your consultant’s secretary if you can get their details. My husband developed decompensated cirrhosis in Sept 2019 - thankfully now well compensated - and had been getting regular 6 monthly blood tests, US scans and follow up consultations until the end of last year, all organised by the hospital. When no appointments came through for November 2021 we waited a while and after two months had elapsed I emailed the GI department (that was the only email address I could find) to outline his condition and to request the regular tests. When a another month had elapsed I emailed again - including a copy of the original email - and the very next day got a reply and apology for the fact that no appointments had been made but a promise to sort them asap. Bloods and US scans were duly booked the following week. I pushed my luck a bit more and asked the secretary if she could provide blood test results from the previous 6 months investigation to our GP (I had requested these during our previous consult but the consultant got prickly, pulled rank and queried why we needed them and I didn’t feel like insisting and alienating him on a phone call) and again she replied back and said she would send them to our GP - they duly arrived and we now have copies. Our GP practice is in a different trust to the hospital so they cannot access my husbands results directly. Like you, I can interpret medical results as I am a veterinarian and feel much more in “control” of my husband’s situation if I have all his results. So as Katy suggests, be your own advocate, be persistent and push POLITELY for your appointments, results etc. I would suggest using email if you can as then you have a better correspondence trail to present should you need to go down the complaints route. Good luck.
I can only sympathise, having had much the same kind of issues myself.
It's now almost 2 years since I first went to my gp feeling decidedly unwell, and I finally got to see a hepatologist 2 weeks ago, after taking it up with PALS.
I've decided I need a wife to help me out, as it seems to work much better with someone fighting in your corner, as it were.
On your own, it seems insurmountable, and I have felt more and more unwell as time has gone on.
Like you, I have a list of letters not being recieved, medics having no knowledge of what other medics have told me, no notes concerning scans, referrals to wrong departments, and so on.
I can totally sympathise and agree it helps if you have someone to help. As you say, on your own it is insurmountable. I hope you are getting somewhere now with treatment and your health. Good luck.
Hi - I can also only sympathise and add that I have been a similar but not without some follow up but not as promised. I was admitted under a Hematologist with a compensated liver and under him for 2 weeks, they then rotate and I was under the Gastroenterologist until I was discharged. I have been lucky to have had a follow up endoscopy with him but both time on discharge and in my follow up he re-requested follow up by the Liver Doc....I have heard nothing so far (I was discharged in Oct 2021). My Jun appointment was cancelled with the Gastro Dr so I have waited a month before calling as it said not to chase. I have only managed to only get though to the appointments team who have done another appointment for Jul (She said it maybe cancelled ?) The admin for Gastro is off for a month! So I have just a general email inbox. The appointments team looked and said there was no record for the follow/referral to the liver doctor from the Gastro team listed so has done another one. A number of us seem to be lost in the massive system and I know COVID hasn't helped. Like me all we can do is keep trying I guess. But its very frustrating when you don't know whats going on especially with your health! Fingers crossed and more importantly ...keep yourself as well as you can with Diet, Exercise and No Alcohol.
Hey there. I’m sorry this has happened to you, it’s happening to me at the moment also. Diagnosis made then just left to get on with it tbh. I have had liver disease for over 20years now and I’m sure I’m feeling symptoms now. Next visit to my GP and heads are going to roll. My quality of life from the fatigue is non existent. I sat yesterday crying as I have no energy to do anything. I’m so fed up with this.
I’ll follow your lead. Hope we get satisfaction. TC x
Hi Sharona68, do you mean that with a 20 year old diagnosis you have never been referred to a liver consultant or gastro at least? Depending obviously on what your diagnosis was/is you should certainly have been having continual care and monitoring and not just by a GP. If you haven't had either treatment or monitoring in all that time goodness knows what the damage is now and if you feel you are showing symptoms you certainly need an up to date full workup to check the state of your liver now and what is going on.
Chase this up NOW, you need to know what state your liver is in and what you can do to rectify symptoms. A damaged liver doesn't fuel you the same as a healthy one so you need to be eating appropriately to fuel your body which may explain why you've run out of gas, also, you can have knock on effects such as anaemia etc. which can also knock out your energy levels.
Get a GP appointment and get referred to a hospital specialist a.s.a.p. You need bloods done, probably scans.
HiI was previously on 6 monthly MRI with quarterly bloods and annual endoscopy
My consultant left the hospital and I have a new one. I had a phone appointment constantly deferred because of the pandemic (not sure why)
I finally spoke to him a few weeks back and the call was literally .. you were a patient of doctor ###, did she tell you what you have? Yes Did she tell you it is terminal? It will kill you?
Can't get over the difference
Luckily there is a liver nurse at the hospital and I have phoned her and talked things through.
My point is that care changes drastically from 1 consultant to another. Ask for a new consultant if, after talking to them you feel the need.
Ouch!!! That is so unnecessary. Clearly some of the Consultants see us as numbers, not real people. So sorry this happened to you. Hope you get a better Consultant suited to your way of dealing with things.
My husband had Decompensated liver cirrhosis & hadn’t seen his consultant for almost 2 years. Covid was always the excuse. She finally said she would come to see him while he was being drained & said she would arrange palliative care. That’s it. I am disgusted with the lack of care despite phone calls asking for him to be examined & get some advice.
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