Faolure to book MRCP/cholangiopathy

[Neyy]

In June I had an ERCP to remove a stone stuck in my bile duct. Afterwards I was told that my bile duct was suspicious for cholangiopathy and the ducts to/in my liver looked narrowed. They said that I may have an autoimmune liver condition and they were booking an mri/mrcp which would be about 4 weeks.

After 6 weeks no news so I contacted the hospital, took almost 2 weeks for them to return my phone calls and emails. I was told the mrcp had not been booked. Next day the consultant who performed the ercp called me to apologise, he had indeed failed to book the mri and he said he would book it immediately but may take up to 4 weeks due to covid backlog. I was just happy it was finally booked. 6 weeks went by and nothing. Contacted hospital again and once again told it hadn't been booked. Told again it would be booked. It's now over 4 months of waiting and worrying I've contacted the hospital pals and had no response from them. GP has contacted hospital and no response. Feeling so totally frustrated. I know covid has put a strain on the nhs but this is ridiculous. My only option now is to put a formal complaint in.

What really troubles me is that if I do have a liver disease then this is the team who will be responsible fir my care and they aren't filling ne with confidence that my care will be any good whatsoever. The only positive about this whole thing is that I'm so focused and anxious on getting this mri that the anxiety surrounding a diagnosis has gone.

[AyrshireK]

Can totally understand and relate to your concerns - my hubby was seeing a local gastroenterologist and in January 2013 was told by him that he was somewhat out of his depth as regards hubbies condition and it was time to refer him to specialist liver centre/transplant unit to touch base (normal being seen after referral was 3 weeks). It got to March and we still hadn't heard anything so when hubby saw gastro for his endoscopy he then said he was "Just doing the report for Edinburgh!". June came along and still nothing from Edinburgh so chased it again and we found out that the local gastro had gone off sick himself in March and report had not been submitted to Edinburgh. A locum urgently saw hubby and referred him to Edinburgh and we were over there in a couple of weeks.

Hubby was subsequently put under the care of a liver specialist at Edinburgh and eventually listed for t/p and when delisted we pushed for him to remain under Edinburgh's care because the local gastro (nice as he is) is so over worked and had failed on so many occasions to order hubbies 6 monthly scans - as he still has these locally (all having to be chased by me) that we feared hubbies care would suffer. Even Edinburgh consultant has remarked that she fears for those who don't have a Katie fighting their corner and basically ordering/reminding doctor to book the necessary tests.

We've definitely found in all the years since 2012 that the squeaky wheel gets the most attention - we are never aggressive or demanding but we don't mind doing a gentle nudge from time to time.

Best wishes, hope you finally get some satisfaction a.s.a.p.

Katie

[Hidden]

Hi,

We are sorry to read about the repeated failure to book your scan.

Here is the link to the NHS complaints page and CCG link;

nhs.uk/using-the-nhs/about-...