lippy44

[lippy44]

id just like to put it out there, i was diagnosed with cirroshis in november 2020 after i had an op and the surgeon saw it. i have never seen a liver specialist, i just had a 2 minute call from him when first diagnosed. I have not recieved any advise, not even from GPS. My health has got so much worse, especially my mental health, Its so unfair. i live in Cornwall, I have never known in my 58 yrs anywhere that treats people like this, nobody cares anymore, my poor husband and children suffer because of this. I have PTSD which is from how ive been treated at treliske Hospital, yes the only hospital in the whole of Cornwall, Absolutely disgusting. i wouldnt treat a animal the way ive been treated.

please do not move to Cornwall, worst mistake ive ever made.

[AyrshireK]

The NICE guidelines for the monitoring of cirrhosis patients is at minimum 6 monthly scans, 6 monthly bloods and regular endoscopies.Even during the height of the covid situation my hubby has been getting all his monitoring, endoscopies and even an emergency procedure .... though less on the way of consultations.

You should be under a gastroenterologist at minimum or preferrably a hepatologist .... though these are thinner on the ground.

It sounds like you've slipped through the net and need to get proactive in getting your appropriate level of care instigated.

Contact the PALS team at your hospital to get their help in getting you back in the system.

Best wishes, Katie

[lippy44 in reply to AyrshireK]

Thanks, i know ive been in touch with pals last yr for the terrible time i endured in the hospital, all i got was a apology that was very false. im suffering from a lot more then cirrhosis, im getting no help at all, i dont think i can carry on. the nhs is very very btoken here. But i am getting in touch, wish there was someone higher.

[Cat1218 in reply to lippy44]

Hi, so sorry that you feel like this. Write to the CEO of the hospital and also contact you MP. I am currently in a complaints situation myself, and I will never be using my local hospital again. Do not discuss the situation on the phone, Email or send a letter then it is all documented, hope this helps.

[lippy44 in reply to Cat1218]

thanks x i was thinking of seeing a solicitor, but yes ill write to them first, especially the Gp xxx hope all goes well for you x

[Aotea2012]

It may be helpful to book an appointment with your GP. Your GP is your main healthcare provider. They provide your general care and work in conjunction with specialists to provide more specialist care such as liver services. Your GP acts as your care coordinator and should be able to get things back on track for you. They can follow things up with the hospital on your behalf. I’d give them a go.

[lippy44 in reply to Aotea2012]

ty for replying, yes definately, i have been treated so bad by the GPs. i think first step is to write a letter, yes and i will record everything.

[OMBRAMAIFU]

I agree with Aotea2012 - I'd place it in the hands of the GP.

He / she should be co-ordinating your care.

I was in a similar situation a while back (unrelated to Cirrhosis which my partner suffers from) and wrote a polite but 'pointed' letter to my GP. She was totally unaware I'd slipped through the cracks - hardly surprising considering the number of patients she deals with - and she got the ball rolling again immediately.

[Alibaba80]

Agree with you. I have Nodular Regenerative Hyperplasia and doctors do very little to alleviate and help with my suffering and symptoms. My family also suffer because of it. You are right it is absolutely appalling...and I live in Birmingham!

[lippy44 in reply to Alibaba80]

Hi Alibaba, yes ive come from Birmingham, i must say i was so lucky there i had realy good caring Gps and good care in hospitals and with mental health matters, quess i was lucky, hope you get everything sorted x

[Alibaba80]

Can I ask what are your symptoms?

[BritishLiverTrust8 Moderator British Liver Trust]

Dear lippy44

If you would find it useful to talk things over, our nurse-led helpline is open Monday to Friday from 9am to 3pm on 0800 652 7330 (excluding bank holidays)

We’re sorry to read of the challenges you feel you have faced with your GP. Here is the link to our Patient Charter which states clearly the rights you have, in terms of your care, as a patient with a liver condition: britishlivertrust.org.uk/li...

Best wishes

British Liver Trust

[Downpour]

Hi. I am so sorry that you’ve had such a dreadful experience. I was diagnosed 4 months ago and I’ve never felt so vulnerable in my life. It’s a frightening diagnosis and we need to find professionals who we can trust and rely on. They are out there so please keep trying. I agree with the idea to keep a file with everything documented and maybe suggest the head of department at the hospital copied to PALS. I find I swing between being fine mentally and then suddenly feeling very angry/ isolated/ upset at the poor treatment I’ve had. It helps me to allow myself to feel like this but then remind myself of the kind people that I’ve also met along the way so far such as this forum. Good luck and know that lots of people are rooting for you.

[lippy44 in reply to Downpour]

Thank you so much Downpour, it does make me like that, ive turned into a person, totally differant from who i am? so bad and my family have suffered so much. i feel like ive been diagnosed with lots of ailments, and just left to get on with it.