1st appointment : Hi all My brother in... - British Liver Trust

British Liver Trust

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1st appointment

formyfriend profile image

Hi all

My brother in law has his 1st appointment next week to check his suitability for transplant. He's going to St James in Leeds. Could anyone please tell me what he should expect? The letter said will be there for 1-2 hours. His liver nurse said that its short as they have recently done a lot of the tests that he would have needed there. He suffers with anxiety and also has HE - will I be able to go in with him for initial conversation before they start the tests? I've been sorting out his meds & chasing appointments etc so will be able to help him answer some questions. Thanks

12 Replies

I think it all depends on whether alcohol was involved for the need of transplant. But there was a great post a few days ago on here and Katie and Richard made some great replies :

healthunlocked.com/britishl....

Thanks

Mike

formyfriend profile image
formyfriend in reply to DM-001

Hi Mike, yes he was a drinker. Been dry now for a year so hopefully that will be in his favour. His bloods are all over the place. When he has pre drain bloods they admit him most of the time as they are they are too high or low. His drains are usually into double figures too. Last week it was 13 litres.I'll take a look at the link thank you

You should give them a ring to see about going in along with him - obviously with HE and his anxiety he probably needs support and I believe other folks who have started the assessment process during covid have had their carer/loved one in with them. During my hubbies assessment I was allowed to be with him for the full week other than in the tests themselves - carer and support networks play a key role when people are listed.

Phone them up and ask the question as to whether you'll be allowed in to support him.

Katie

I will, thanks Katie

My hubby couldn't have done it and understood things or made himself known without support.

BIL may well be much worse than he is as there's been lots of errors with his meds, so will be glad to have his notes reviewed

Trust5 profile image
Trust5Administrator

Hello,

We have some information on our website about Transplant and there is also information on the NHSBT website.

Here are the links:

britishlivertrust.org.uk/in...

nhsbt.nhs.uk/organ-transpla...

Really important that he has someone with him - a second pair of ears is vital, have the questions you want to ask written down as well.

regards

Sound advice thank you and also for the links.

Good afternoon.

I would just like to explain something here as I feel there might be a little confusion. Some people still see our beloved NHS as being a single entity. There are at present some 223 independent NHS trusts in the UK. Your local NHS trust hospital is run as a completely different trust as that of St Jimmy’s in Leeds.

One of the problems with this setup is the sharing of data. Your local hospital may well have carried out certain scan’s, blood tests, fibroscan's and even MRI’s and Ultrasound scans. All these records belong to the hospital that produced them and are subjected to data protection copyright. Now, a hospital can share these images and results with another hospital to gain a second opinion or to request the need for further investigation by referring someone to a liver specials centre as in the case of St James. But they can't pass on hard data.

Each of these hospital trusts uses its own computer system and network. So, the sharing of data between some hospital becomes difficult. In recent years many healthcare trusts have changed their name to encompass other regional hospitals.

When I had my liver Transplant back in 2016. My local hospital at Stoke was a separate healthcare trust to that of my own local GP. So my GP didn’t have access to my hospital trust records.

Because I started to develop tumours on my liver, I was referred to the Queen Elizabeth Hospital in Birmingham. Once again this was a separate NHS trust. So, not only did my GP not have access to the QE but neither did my local hospital.

Back then the QE was its own NHS Trust. Many hospitals have now changed their name. The QE for example has now become known as “The University Hospitals Birmingham NHS Trust”. This has meant that six regional hospitals around the Birmingham area now all share the same computer system and all patient data.

So, where am I going with this? If your local hospital was outside of the St James catchment area, St James will want to produce their own set of data. So, a lot of the tests and scans will most likely have to be repeated.

I think this initial interview visit to St James is just a preliminary interview to meet up with you and to outline where they go from here.

A liver transplant assessment is normally a two/three-day event. This will involve an interview with up to five specialist people present.

I have recently replied to a previous post from Luna84, “Liver transplant assessment query” here I have included some online links to various publications that may be of help. Please see: healthunlocked.com/britishl...

I’m sorry about the length of this reply, but I sometimes think we forget just how fragmented our NHS has become.

Good luck with the interview.

Richard.

Hi Richard, really helpful thank you

Atb! Your bro-in-law will be allowed someone with him if he has HE/confusion. They are quite strict about who enters the unit since Covid, and it's usually strictly alone with the exception of patients suffering from HE. My husband has been assessed since the pandemic and I badly wanted to be with him. I was prepared to sit in the car all day and wait, so I went with him, and they did take pity on me and allow me in for some of the appointments, but not the tests. They were very very kind to me, and I think they find it as hard as us when patients can't have their usual network of support with them.

formyfriend profile image
formyfriend in reply to Ewife

Thank you, I'm going to phone first so hopefully they'll let me in. Hope your husband is OK.

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