Help, Advice please for Liver Transpla... - British Liver Trust

British Liver Trust

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Help, Advice please for Liver Transplant Referral

WildHorses101 profile image
5 Replies

Morning,

Has anyone had any experiences with fighting for a second opinion for referral for Liver Transplant Assessment, plus got well enough to pass the assessment and got on the list & since received a transplant?

Any advice on what I can do to help improve husbands chances, hes had an awful journey at hands of hospital and through their sheer lack of care, and, being messed about terrible, and, not signposted to the correct Consultant, ended up being turned down to even go for assessment for transplant and they just wrote him off!

The one place he turned to for help, almost destroyed him and were left picking up the pieces and putting him back together both physically and emotionally! Needless to say, hes fighting, improving & proving them wrong! :)

It beggars belief what they did to him, I am heartbroken, fuming, desperate for help and advice, he has been so unfairly treated at the one place you turn to for help! Who can we trust now egh!

Many thanks

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WildHorses101
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5 Replies
Shep666 profile image
Shep666

Hi

I am sorry to see you and your husband going through such heartache and misery 😕

I understand that your experience has been clouded and confused by your past treatment at the hospital, but as of now, have they given any concrete reasons for refusing to put him on the list? It would be a good starting point to see why they refused and then see what he can do?

For me, I was assesed and then held back - I had pneumonia in one lung so fair enough. I was put on the list once that cleared.

WildHorses101 profile image
WildHorses101 in reply to Shep666

hi,

No explanation other than “turned down for assessment” and basically off you go, youre on your own! Now out of the blue since complaining, and an absolute fob off of excuses from the Chief Exec 😡 a telephone appointment has arrived with another consultant!

My husband is desperate to get a second opinion but terrified of being turned down, im out of my mind with worry and trying really hard to get him well enough to request and fight for second opinion, im so frightened times ticking and running out of time

Many thanks

Shep666 profile image
Shep666 in reply to WildHorses101

Hi

Were any of the fob off's medical reasons?

It really is disappointing and unbelievable that they have not provided a medical reason. Without knowing his personal situation nor who you are dealing with it is really hard to give any advice other than keep at it. Have you tried the help line of liver nurses quoted on this forum?

It does seem to fly in the face of all the treatment, help and information that my liver team at the QE Birmingham gave me during my liver journey and I only hope you get some more help from the new consultant.

BritishLiverTrust8 profile image
BritishLiverTrust8ModeratorBritish Liver Trust

Dear WildHorses101

If you [are in the UK and] 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)

Best wishes

British Liver Trust

What caused the liver disease?

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