This is my first post here so I’m a bit nervous…I was just wondering if anyone had encountered any problems with the transplant assessment process at Kings College Hospital in London or problems with the care they received while there.
I have had huge issues and oversights with them and I was wondering whether this was just our case or if it is just the way they are.
They’ve been really awful, insensitive, some of the nurses don’t seem to understand much about liver failure or the complication and the assessment process itself has not been completed properly.
Please let me know if you’ve had the same experience as I am looking to try and challenge the way they have operated.
Emma
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Missrogerson1
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It was for my partner to be assessed. I had huge questions as to him being transferred for the assessment at that time anyway as he was in an episode of HE.
They told me the day before his assessment began that he wouldn’t qualify because of his previous Drinking (he was 9 months sober).
I raised several red flags during the assessment that he wouldn’t be able to complete it properly because he wasn’t in mental capacity but that I could answer any questions relating to his recovery (strong), his mental health (very good when he wasn’t confused), his support system for post op (very good, I am his full time carer, have a solid recovery myself and am volunteering in a drug and alcohol unit plus I have a huge knowledge of liver disease and some medical knowledge).
He also had a great career in project management, engaged in recovery really well and was fit and working until last year. He was only 43 years old.
They refused to call me in as part of the assessment, kept us in the dark, refused to assess him for a living donation (he had three people willing to donate) even though they off er this service.
They refused transplant on psychosocial grounds but they could not possibly have assessed him as he was not able to give them the information they needed. Even though I told them this multiple times.
They then stonewalled us and refused to give us the written reasons for refusal for three solid weeks. Ignored our emails and calls requesting it. Ignored a written request from him for his medical records. Told us they would help with a second opinion and didn’t bother.
He passed away of an infection two days after we got the written reasons and only then gave them because I threatened them with legal action.
I was told by a nurse the day we got there that he would be fine ‘when he got his transplant’ not ‘if’ and another patient came over after and told me not to believe a word they say.
They also bullied us into being referred back to a hospital that was not appropriate for my partners needs that if we didn’t accept (you have a legal right to choose hospital and clinician) that there wasn’t anything that they could do really but that we would never be welcome back at the hospital again in the future.
We're so sad to read this, and very sorry for your loss.
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)
With best wishes from all at the British Liver Trust
I will definitely do this. Thank you. I miss him so much and knowing that he would have been a great candidate for transplant and that he wasn’t assessed fairly is very difficult to cope with now for me and his children.
I am so sorry for your loss, I think some of these so called professionals can be very judgemental as opposed to caring and helpful.
From my past experiences with some of the medical profession I tend to suggest to people, even in good health, that they should get an enduring power of attorney for health and welfare to enable them to act on behalf of their partner/parents etc., and vice versa. Believe me, the medics soon change their tune when you show this to them.
Really sound advice for everyone, you never know when you might need PA and it makes things so much easier. You can apply online very easily gov.uk/power-of-attorney
I’m so sorry for your loss. It must be such an awful time for you and the kids. I can’t comment on Kings. My Mum talked to Addenbrookes but decided not to go ahead. I think some of their protocols are online if you want a comparison, but you’ve probably got so much to sort out right now. Sending you love and strength to get through this difficult time x
Echo everyone else - really sorry for the loss of your husband. 😕
Your experience of Kings has clearly not helped you, which is even sadder. Please take some time to mourne the loss, but it is understandable if this gives you some focus at this time.
Time and reflection can always help in pursuing these kind of "missions". 👍
Had a transplant 6 years ago. Always felt I was receiving the best of attention. Realised they can't tell you everything but no complaints. After care excellent. Since transplant I have developed cholangitis so back on the list. Sometimes felt they have gone above and beyond. I had liver cancer so not drink related perhaps that makes a difference but really can't fault them and everything was so quick
I actually can’t fault the medical care he did ‘qualify’ for. The nursing was great for instance and the facilities are amazing.
His assessment was heavily hampered by the fact that they read his drinking history and basically told me the decision was made before they even assessed him. It was the stigmatism of alcohol and the judgement of him because of that I have a problem with.
It’s lovely to see that you had a successful transplant! And I’m glad they cared for you the way you deserve. Good luck with the next part! X
Hi like everyone else so sorry to hear about your loss 💕. I am 3 months post transplant from Kings, I haven’t drunk for nearly 20 years but still consider myself a alcoholic, I can only imagine how hard it is for yourself and your family. Once again I can only say what my treatment was like and I can only say it was the best I could have expected they were fantastic each time I was in and I was in a few times, one of the times I went through HE episode and I was horrible and they were very understanding. All of our thoughts, the wife and I are sending to you 💕💕.
Firstly, I am very sorry for your loss. Your partner is the same age as my husband so it really hit home to me.
We are early in his transplant journey and still getting tests at our local hospital but nearest transplant centre for us will be Kings or the Royal Free.
I think others have given you a lot of advice but I can imagine your grief at the moment is significant and you will not be looking at what happened objectively. My father in law died last year, having contracted a minor infection 2 days after his last round of radiotherapy for lung cancer, which rapidly progressed to sepsis. After 48 hours it was agreed nothing more could be done and he was moved to palliative care, but on a ward that was not set up for such things, he was too sick to be moved and so we had to make the best of it. I believe the staff did everything they could despite being clearly overstretched and out of their depth, my mother in law in her grief remains convinced that the staff killed her husband. It has completely clouded the memory of those last few daya for the rest of the family because we cannot talk about them with her without all of the anger she has which is a great shame because, while awful, there were some beautiful moments in those days.
Please please consider some bereavement counselling. When you are ready, read the notes, deal with PALS and if you choose to go down that route follow all their complaints procedures to the letter - in any legal process it is not looked upon positively if you are not following the process.
The only thing I would say (and this is my personal opinion based on what you have said above), is that if he couldn't answer the questions on the psyhcological assessment, someone else answering them for him is not necessarily a solution because it doesnt give them a clear picture of the patient's psychological condition. Imagine going to the optician and them asking someone else whether or not you could see the letters and then giving you glasses based on what someone else thinks you can or cannot see. I am not saying that your experience wasn't wrong, I'm just trying to give you another perspective on the situation.
Look after yourself, please call the BLT nurses and see what bereavement support might be available to you. This forum is also a wealth of information and support. Take good care x
I’m really sorry to hear about your father in law, I truly am.
I’m Actually not suffering particularly from anger at the moment, and I am lucky in the sense it hasn’t clouded my memories of my last precious moments with him.
It is just something I found shocking and unethical and I am trying to sound out whether this is regular procedure or just our case.
Fortunately when you go to the opticians it isn’t to save your life (usually) and this particular procedure was. And potentially you wouldn’t be able to ever read the letters if you had an eye problem whereas my partner was in an episode of HE which can pass.
Also I could have given them lots of information that he wasn’t capable of …it was done on psychosocial grounds not psychological grounds - basically they believed he was a relapse risk. And they knew nothing about his recovery, what he’d done to get sober, stay sober and what support had been in place for him post transplant because he wasn’t able to tell them. And this could have potentially changed their perception.
But thank you for taking the time to reply to me and I honestly hope this transplant journey is much easier and more successful for you and your husband and that it’s the start of a brand new life for you x
So very sorry for your loss, I too echo what has been said. My husband had his assessment at kings (AIH and alcohol) and was turned down. I thought he had given up the drink for 6 months prior to assessment but the blood tests they did showed that he hadnt. He had become a very good 'covert alcoholic ' even with periods of HE. They were very good to me but as soon as they discovered he was not telling the truth they said we could appeal or go elsewhere. But I cant fault kings they were good to us until then. As it happened hubbie didnt want transplant and that was why he had carried on drinking. Again I am so sorry to hear of your loss, be kind to yourself xx
Thank you for your very kind offer, but I have been extremely lucky because he decided on his own that he would stop. That was in February 2022. His AIH is now under control and if he had been listed he would now be taken off list as he has improved so much. I thought I would just share my experience of kings with you as I thought it may help. They seemed less caring once they new he was lying and hadnt stopped drinking. I am so sorry that the chance for things to improve for you never came your way. As you say it's hard being the partner and seeing the person you love disappear. Be kind to yourself and hug those you love. Xxxx
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Liver transplant
Hallo! (Haemochromatosis and Transplant - QE, Birmingham)
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