This morning my partner was advised by the Royal free liver transplant assessment unit that he had been rejected for a liver transplant. This was on the basis of false information. The drug and alcohol nurse had advised that he was unwilling to allow RF to access his data from the drug and alcohol support service he is using and that he had regulary relapsed from alcohol withdrawal. Both of these points are not true. We are going through a complaints process but this could take some time. He has serious cirrhosis and I’m worried he will die. The Royal Free have advised that he could go to another hospital. My feeling is another hospital will reject him as he has been rejected by the Royal free and therefore I need to persist aggressively with the Royal free to get him on the transplant waiting list. Any views?
Rejected for liver transplant - British Liver Trust
Rejected for liver transplant
Sorry to hear that. Obviously total alcohol abstinence is a pre-requisite to transplant listing and any hint of alcohol use prior to assessment is an absolute contraindication to listing.
You say they have refused him on grounds that he "was unwilling to allow RF to access his data from drug and alcohol support service" & that they have said "he has regularly relapsed from alcohol withdrawal" but that both of these are un true.
So, if he definitely has remained totally abstinent for last 6 month (minimum) and he has been compliant with an alcohol support service & is WILLING to make any information shared there available to the RF team then you have a case.
However, you have to be absolutely sure that hubby didn't block them access to his support data and that he has been fully compliant with all abstinence requirements. They will have run medical tests that check whether there has been recent alcohol usage.
I do wish you all the best,
Katie
Well he can barely get out of the house to get alcohol because he crushed a vertebra as his liver disease gave him brittle bones so up until very recently he couldn’t walk. And I doubt his carers, cleaner, physio or district nurse have been smuggling alcohol in. We have had no friends round as I was too worried that he’d get covid and I work from home, so I think even a devious alcoholic would have found it difficult to get passed me plus his bloods don’t show alcohol. He’s been sober since October so not 6 months but they said 3 months for the referral. There seems to have been some miscommunication around getting info from the alcohol support service but the transplant assessment doctor said that was not the main problem- the relapsing was. But he hasn’t relapsed. He’s only ever given up alcohol once in October and he hasn’t drunk since . I am very very very angry and upset
We think they think a relapse is when he was previously detoxed on emergency admission because of encephalopathy/various other dangerous liver failure symptoms. However at no time during the 3 previous admissions did he say he was going to give up alcohol on discharge (indeed there was an ongoing debate as to whether he just had ALD / cirrhosis and that harm reduction might help. )He only agreed to do it on the 4th admission after they said he’d be dead by Christmas. He has been clean ever since
If you have family with a compatible liver you may have to consider doing a transplant abroad where the prices are high but not crazy-high as they are in the USA. I have heard about people going to Turkey and India. India is cheapest but the flight there is long. Turkey is just as good but costs twice as much as India.
Of course you should immediately appeal and look for another UK hospital for options.
The criteria for ALD patients to be considered for an assessment is 6 months abstinence. So if your partner stopped at the very beginning of October, he would not be eligible for the transplant assessment until the beginning of April. This must be total abstinence and then he qualifies for the assessment process. There appears to be some confusion but the Royal Free should be able to explain everything to you. Good luck with everything, it’s only a little longer and hopefully he will be accepted to be put on the transplant list.
Hi Naomi,
We are sorry to read how stressful this situation is for you and your partner.
Hopefully Patient Advice and Liaison ( PALS) can help facilitate some meetings with the senior consultant in charge of your partners care and the transplant team to clarify matters.
Ha ha pals just phoned us and told us as it is an issue about a clinical judgement they can’t do anything. So I’m writing a complaint now (not about PALS )
Did he go through the formal transplant assessment or was there a refusal to actually assess him at this time?
Rather than going all guns blazing maybe the question needs to be whether or not he might be given the opportunity to prove his 6 month abstinence and then be assessed?
Seeing as the 'relapses' as they are calling them actually happened prior to him entering the potential pre-transplant assessment phase i.e. before any supports had been put in place for him to actually safely detox & they had gone the harm reduction route rather than actually helping him get off booze - and obviously he hadn't done so of his own accord.
As 6 months haven't lapsed since his de-tox in hospital and from that date to now he has abstained (and hopefully complied with alcohol support services) then the question really is can he be assessed/reassessed once he has reached the 6 month point which isn't that long to go.
If Royal Free still say no then what about Kings. If you can go there with a clean slate, 6 months abstinence and jump through every hoop required then there still might be hope. Obviously, RF are looking at that period from his earlier admissions where no doubt he was told that he needed to stop drinking but didn't (I totally acknowledge that supports don't seem to have been put in place to help him safely detox).
Keep fighting but do so calmly and not aggressively.
Katie
Thanks Katie. Wise words. I’ve drafted a complaint a bit along those lines - what I didn’t realise when I was doing this was the alcohol nurse assessor actually made my partner my cry so am going in a bit hard as he’s not a cryer. . PALS advised me to complain. Partner is going to look at it and then it’ll go in. We will also be approaching GP, the drug and alcohol service , his liver consultant at royal London from where he was referred, Healthwatch and MP if necessary. They really don’t know who they are up against
Just interested.....had they actually done the full day of assessments and meeting with surgeon etc?Also, have they kept him under their care?
It does seem quite quick since his diagnosis and subsequent alcohol withdrawal to have reached all this final conclusion. I'm just questioning whether it's not just a "not yet"
🤔 From what I have understood along the way, they don't often not give hope if there's no other factors that mean survival of surgery or long term survival not expected. Often they like to wait and observe if the persons becomes compensated once the toxins are removed - but I understand your anxiety, I don't know how sick your husband has become along the way.
I am out of my league here a little bit but can anybody else vouch for him, for example, people who visit him or see him regularly? I wonder if something like "please note I am attaching 10 testimonies about his sobriety" and attach them?
I have known (husband) for (x) years since he has been my neighbor and his transformation has been remarkebale...
I have been the pastor of church (y) and (husband) has been a member for (x) years and let me tell you what I have witnessed in the past several months...
Just an idea, maybe a stupid one.
Can you use a solicitor to help?
Hi Naomi,
We have had to delete the comment on the post that details the care from the Royal Free. As a charity we have to be mindful of the litigious nature of any posts on our forum, as per our community guidelines that are pinned.
Please do call our nurse helpline ( details posted) if you would like a supportive chat.
With best wishes
Trust1
Totally understand
lol he died just over two years ago. I did put in a complaint that was partially upheld and he was referred to kings for a second opinion but he died before he got to see them.
The morale of the tale is a) drinking a lot is very bad for you b) if you want to get through the transplant assessment hoops prepare well c) the system does not like people who are damaged psychologically
Liver cirrhosis 
liver transplant
Liver transplant aborted
Liver transplant waiting times.
