Well as most of you know hubby was suppose to be referred to Birmingham QE for transplant assessment. 1st referral was 'lost' so we saw a new consultant in Feb and a letter was sent then.
Just phone QE and they had no record of a referral being made even though I saw letter myself. She was lovely and suggestEd that I phone gastrointestinal team in reading and ask them to fax the letter to her so she could add him to the list.
I did just that and they wouldn't fax it to QE just on my say so. I would have to phone QE to get them to phone Royal Berks hospital to ask them to fax it. QE say they can't do that.
I wish people would just so their jobs right the first time. I'm so glad i phoned as he's waited long enough.
Frustrated isnt even strong enough to express how o feel.
Contacting GP to see if she can help. Otherwise I'm going to fax the copy that I have.
GRRRRR. I am screaming along with your here. I feel a strongly worded letter coming along although I have probably prompted you to do that before. This is ridiculous - once again some blooming paperwork going between hospitals is playing with someones life here.
If you have a copy of the referral letter then I would go ahead and fax it to them. All this we can't take your word for it bull is nonsense. Your hubby needs to be seen a.s.a.p. and he has waited long enough (too long actually - I know that Edinburgh aim to see people within 3 weeks of referral and once I chased up hubbies referal we were there within a fortnight & once his Edinburgh consultant had decided it was actually time to submit him for a transplant assessment we got a phonecall that same day with an in patient admittance for the next week for assessment).
QEB seem to have a lot of issues with this referral in procedure - they might be great once the balls rolling but a lot of folks seem to talk about issues with referrals.
I know exactly how you feel. My partner finally got assessment @ Leeds last week & came home Good Friday. We now have to go back today as they "Forgot" to do a heart scan. We are lucky to have a very good friend who is taking us as I don't drive & my partner isn't well enough to. His stomach & legs are so swollen that he is living in PJ's 'cos can't get into anything else.
Decision is made next Monday so let's hope nothing else gets forgotten.
Travel is a problem for us aswell as I don't drive and hubby can't. He has the same problem with clothes and shoes. I had to get him shoes 3 sizes bigger than his normal size. He calls them his club shoes. Lol. Good luck on monday I really hope he gets list. Xx
Thank you. Phoned QE back and explained the situation she said she would sort it. Finally someones whos putting patient safety before office politics. She was just lovely. Spoke to PALS too who said they would investigate.
GP couldn't help we've decided just to sort things ourselves now as it's just easier at least then it's done. I'm going to fax my copy too so I know she's defiantly got it.
Do what I did and contact your MP. Takes a few emails but they will fast track things for you.
You should demand it there and then , don't move till they do ! You won't get nowhere if you shy off, some of them are really stubborn people , they will give in trust me! Good luck
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What happens after the liver referral? 
Transplant
Help, Advice please for Liver Transplant Referral
Fed up now
Transplant waiting list
