Ongoing liver assessment stress

[Corrine1]

Over the last few weeks my husband has been assessed on an outpatient basis to see whether he's suitable for a liver transplant. His last test was this week on Wednesday when he had to do a treadmill test to see how fit his heart is. Just by chance we were looking at his medical record on line and saw a letter re an MDT meeting that had been held at Leeds. I was shocked because no one had informed us that this had taken place. It had been sent to the GP, consultant hepatologist and the consultant GI who referred him to Leeds. A copy of the letter hadn't been sent to my husband who is the main person in all this! The letter was dated 26th Feb, so over a week ago. The letter mentioned finding a small lesion in segment 7 to be LR-3 with no hypervascularity or wash out. I've had to look up what this all means but am mainly shocked and disappointed that no one at our GP surgery or anyone else involved in my husbands case thought to phone him and discuss this. It also stated that the 'lesion needs to be kept under close surveillance while patient is on the waiting list'.

We have not been told that he is actually going to be on the waiting list yet or given any feedback about the tests. We assumed that they hadn't had a meeting about this yet but apparently they have.

Have others had a similar experience of this? It is Friday afternoon now so too late to contact anyone but I was just appalled at the lack of contact we have had regarding this and the increased stress this adds to an already very stressful situation. I know if I was a GP I would have rung up a patient who I had received this type of letter about rather than just filing it. I would also make sure my patients were kept fully informed if I were their consultant.

[Richard-Allen]

Sadly Corrine this can often happen. This is caused by a brake down in communication between different healthcare trusts.

Normally a Liver specialist at Leeds would write to the patient and submit a copy of this letter to the GP for information. However, it looks like in your case, they have written to your GP, thinking that the GP would be passing on the message. The GP in turn will think that you have been sent a copy of the letter. So, in effect you are not informed.

I would have thought that if Leeds have written to your GP, then they should also be writing to you too, after all you are THEIR patient.

I'm not a patient of St Jimmys, I had my transplant carried out at the QE Birmingham. Here I have a "myhealth@QEHB" login and can see all my details, all my blood test results and also all those letters from the hospital to myself and my GP. This is a really handy facility. But, once again it's not available at other healthcare trusts, which is a big shame.

[Corrine1 in reply to Richard-Allen]

Thanks for your reply. It would make things so much easier to be able to have access to all the details of his case on line as we wouldn't feel so much in the dark. It doesn't seem like anyones taking responsibility to ensure the patient is being kept informed. Initially the liver co-ordinators were really helpful but they seem to have gone really quiet recently and very difficult to get hold of.

How are you getting on after your transplant?

[Ewife]

Such a shame you've had this experience. Its a really stressful time being assessed. I'm sure there must have been a communication error or something as we have had an entirely different experience. We were rung straight away by the transplant co-ordinator, and had a phone call from the consultant there about a complication that needed treatment. All of this was within a few days of my husbands assessment. If you have a number to contact the team at St James I'd try that and explain your concerns. They're very friendly. Atb xx

[Corrine1 in reply to Ewife]

Thankyou for your reply. I'm glad you had a positive experience. Was your husbands assessment at St James, Leeds?

It seems odd to me that they were so helpful to us at first, the co- coordinators kept ringing him but it just seems to have tailed off. Is it the transplant co- ordinator who tells people they are suitable?

I feel quite in the dark about a lot of things.

Were you sent copies of the test results and recommendations as we dont seem to have been sent anything. We intend to contact them on Monday.

[Ewife in reply to Corrine1]

Yes, it was St. James. We had a phonecall from the co-ordinator on the Monday after his assessment. This was followed up with a phone call later that week (as I said earlier). We were under a private consultant before being referred to Leeds, and have chosen to keep contact with him alongside the Leeds team. He was very helpful explaining things. One of the things he told us is that St. James are noted throughout Europe for having extremely robust assesment process, and as a result an excellent success rate of transplants. I wonder if there's some element to your husbands condition that needs investigating further before they offer the place on the register?

[Corrine1 in reply to Ewife]

I've heard lots of good things about Leeds as well. No idea if theres anything else that needs investigating as no one has spoken to us! Hopefully we'll find out more next week, fingers crossed.

[AyrshireK in reply to Corrine1]

It sounds like they held the MDT to see if hubby needed listing i.e. they'd completed the first part of the assessment as regards how poorly the patient is and whether transplant is the necessary course of action and it sounds like at that meeting they decided transplant listing was going to be appropriate.

Since that meeting your husband would appear to have gone on to part 2 of the assessment in seeing whether he is actually fit enough for the procedure and there are no contraindications i.e. he's only had the heart and lung stress test after they discussed him at MDT and decided that he needs transplant. They obviously still had this fitness part of the assessment to do.

So in my eyes the final decision meeting hasn't yet happened and therefore you've not yet been told he is to be listed. Seems an odd way of doing things but as it's been done as an outpatient that might be the way it rolls.

At Edinburgh where my hubby was assessed it was a 4 day inpatient stay with all tests & discussions completed within those days then the MDT on Friday morning and the decision relayed to us in person on the Friday afternoon.

Fingers crossed you hear soon and all goes well.

Katie

[Corrine1 in reply to AyrshireK]

Thanks for your thoughts Katie.

Its probably been more patchy due to being an outpatient because of Covid and it is odd that no ones contacted us so you're probably right.

I cant believe they would just forget to tell us!.