Fed up now: Hi all, still not heard... - British Liver Trust

British Liver Trust
17,407 members8,839 posts

Fed up now

Hi all, still not heard anything off my gastro about my "urgent" ammonia test that was supposed to take place. So as I previously mentioned I spoke to my gp about a referral to QE hosp, but god knows how long that could take? Confusion getting worse despite the lactulose I take.. really fuzzy/numb head, forget everything once it's happened.. easily disoreantated / dizzy and just feel really "ill" .. by 1pm im struggling to function as im so tired.. i cant even say the right words quite often and i say them in wrong order..I managed to get my weight back up slightly so I guess that's a plus. Just struggling as I've got no appointments to look forward to and kinda feel I've been left in the dark.. anyone else get a direct referreral to a liver unit from their gp? If so how long did you wait before you had something from.them in the post / phone call?

10 Replies
oldestnewest

I think the NHS has forgotten the meaning of the word 'urgent'.

Have you considered phoning the hospital and asking Gastroenterologist's secretary if they could give you any idea when this appointment will be? Mention how unwell you are?

Reply

Thank yiu for reply. Yeah I phoned the secretary and she just apologised for there being no urgent appointments... I've told them previously how ill I am yet seems to make no difference to the urgency.

1 like
Reply

All you can do , I suppose, is phone GP and tell them what secretary said . See if GP will phone Consultant.

GPs can admit you via A&E emergency centre to Clinical Assessment Unit.

You've told GP about being dizzy?

Reply

Hello ktan,

I'm a grumpy old git so I can get away with stuff when it comes to complaining. Please don't go blaming the NHS, the fault most likely lies with your particular healthcare trust.

The sort of questions I would now be asking are, "Why are you refusing to treat me?" or "Why are you refusing to refer me?" and also ask for the answer to be in written format please so you can share the lack of support with your local MP. These are really just questions that you need answers to, and tends to create a response. It could well be something simple with the winter whether now approaching, some NHS trust may well be asking GP's to try and cut back on the amount of referrals they make, due to higher demand placed on hospitals. just a thought.

I have been talking recently about HE on this site with a few people and I think a shack-up about how HE is treated in both pre-Transplant and post Transplant situations is needed. There seems to be a school of thought that once you've had a liver transplant, then all should be normal again. Sadly some brain damage maybe permanent, but this is often over looked.

The other thing I should mention is that if you have a driving license, then the DVLA should have been told about your condition. It is your responsibility to inform them of any changes in your health that can affect your driving ability. If you do continue to drive with HE then you won't be insured either. I just want to point this out as it's better to be safe that sorry.

Good luck

Reply

Totally agree about HE effects being ignored post transplant. Here in France I had a hell of a time getting people to understand how I felt/was. My accent changed in French for god’s sake and my best friend, English, thought I’d had a stroke as my speech is a tiny bit slurred.

Reply

I asked for an urgent appointment from my gp back in june but was triaged as non urgent. I waited for over 20 weeks and finally saw him about 10 days ago. I paid to see a gastroenterologist privately in june as I was worried sick. I saw him the same day that I rang to enquire and he put me straight on to his nhs list. This means that I have had various blood tests, ct scan, a capsule endoscopy and I am booked to have another gastroscopy done next week by two consultants. He seems to be more interested in why I'm anaemic and the fact I have a bleeding duodenal ulcer. It may be worth you contacting PALS to ask if they can look into the reason for your long wait. Take care. Deb

Reply

I have ESLD and my last appointment in clinic was in August, the Registrar told me ‘we have to keep a close eye on you and see you every fortnight’ today (Nov 27th) is my follow up appointment - 13 weeks later!!

So much for ‘every fortnight’ and I only got this appointment as I chased them!!!

Reply

Hi you can request your gp to refer you to a hepatologist. If you havent seen one then ask for a referral that was what we had to do.

Good luck

Reply

Phone up your liver unit that’s what I did but cancelled it when I realised they may take my driving license away. I’m not as bad as you yet so feel your frustration. The liver nurse said I could ring and speak to her or email so you probably can too.

Reply

Some areas are slower than others for appointments. Under chose and book you can ask your GP to refer you to any hospital. I asked mine for this same reason. I was diagnosed with severe liver fibrosis then have had zero contact from the gastroenterologist! I searched on line for a teaching hospital and asked my GP to refer me to a hepatologist. I go on the 5th December. Your symptoms could be caused by a number of things. I suffer from ME and Fibro after EBV. I have days when I am totally fatigued. The 'brain fog' is is a weird experience, at times it can be funny even. I have substituted words eg said table instead of tea pot. Other times I cannot recall words for something, the funniest was a staggered junction. I described it as a your turn your turn your turn place. I never feel dizzy when seated or driving however, I do sometimes when I stand up too quickly or when walking. As Richard says, you have sometimes got to a grumpy old man or woman . Being pro - active is essential sometimes. Fatigue is not like just being tired. You have to respond to your body and rest/sleep. Using a very small word is also very essential , say NO. It hard for people to understand this, your real friends and family should understand. I was a doer,a giver and fitted 48 into 24 hours. After losing a lot of days due to 'crashing' I feel the difference. Some days I have 2 hours of energy, others i can be normalish for 4. Ignore anyone who calls you lazy too. Your not! The other plus is you will have the energy to chase up your appointments. As others have said it can be done, but it takes energy.. Hazel

Reply

You may also like...