help with changing hospitals

[Zechariah123]

hi, I’ve been listed for liver transplant in Birmingham. I’m currently being treated for cancer in Liverpool Aintree. They have made so many mistakes it’s unbelievable…

They didn’t do bloods for hepatitis and after 16 months of cancer Birmingham discover this is the primary cause.

They ruptured my hepatic artery during TACE treatment. While waiting for this to heal injections for 6 weeks to prevent clotting I’ve developed 3 new tumours.

I’m seriously unhappy with everything and when they told me I should be happy waiting 6 months for a scan (should have been 3 months) they told me to count myself lucky as during covid it could have been 2 years.

I want to continue the cancer treatments privately but don’t know where to start. Does anybody have private chemo/radiotherapy treatments for their liver cancer.

I’ll still be listed at Birmingham but cannot afford more mistakes at this hospital.

thanks

[AyrshireK]

Have you discussed this with Birmingham? I am surprised they are letting another hospital fiddle with your liver - especially if you are on t/p list.

Discuss it with them.

All the best.

Katie

[Zechariah123 in reply to AyrshireK]

I’m going to ring them tmw. I have to have the treatment done in Liverpool while waiting for the transplant.

[Zechariah123 in reply to Zechariah123]

thanks

[AyrshireK in reply to Zechariah123]

They need to know especially in Light of the additional tumours as this may have implications on your listing.

Definately phone them and get their advice.

Katie

[Zechariah123 in reply to AyrshireK]

hi Katie

It was the last straw yesterday. Birmingham said I need hep c treatment urgently and Liverpool said they have a funding issue it will be 6 weeks for a course of treatment. I know for a fact if you are homeless they are spot checking for hep c and the tablets are given with 15 minutes of a positive result. They also promised after the botched TACE (catheter ruptured artery) I wouldn’t go back on the waiting list. Yesterday they said 3 months wait again. I’ve developed 3 tumours in the 6 weeks since the botched job. Thanks for your reply just waiting on Birmingham will update

X

[oap74]

I’m really surprised at your disappointment with Birmingham, I’ve been under them for three years now and my cancer is stable after 5 doses of radiotherapy 2 years ago and I have regular 6 monthly telephone consultations. My next is 2nd November and I will be notified for of my next one before the end of November, also have regular scans. Talk to them direct I’m sure they will sort it out. All the best.

[ThreeSmiles in reply to oap74]

Hi oap

I think it is Liverpool that Zech is unhappy with - not Birmingham.

Miles

[Cat-B]

Hi can’t you transfer your cancer treatment to Birmingham so the liver team can keep a closer eye on you, I presume it’s not easy to commute to Birmingham? As far as going private, you may find it’s exactly the same NHS consultants doing the private work ( I personally would put the money towards Taxie’s and try to all my care moved to Birmingham. Contact your liver team and if they can’t help contact your local CCG. Good luck

[Zechariah123 in reply to Cat-B]

yes this is what I’m hoping for

[oap74]

my apologies if I got it wrong, but stick with Birmingham I think they are first class. All the best

[Zechariah123]

I’m going to ask to transfer to Birmingham, waiting to hear from the co ordinator

Thanks 🙏

[Chrisjohnsy]

Ive lauched a formal complaint against Birmingham....My treatment has transferred to Cardiff where I live. They have refused to release my clinical notes. I had an endoscopy for varicies, they gave me the all clear and a week later I had a catastrophic bleed which almost killed me. Cardiff have been brilliant