Follow Up Appointment Date?

[Orangekangaroo]

When should my husband expect to see a specialist in person?

So my husband was very ill before Christmas, very tired, drowsy, rigors, nose bleeds, infection after infection. He saw his GO in December who arranged a number of tests (bloods, x-Ray, scan, etc. - full MOT). In January GP (based on results) made an urgent referral to Gastroenterology. My husband has been T-total since Christmas.

My husband had a telephone consultation at the beginning of May and the person he spoke with said that he wld repeat blood tests and scan and see husband in liver clinic in 4 months time. We had to chase this up to get fibroscan done - it had got lost in system. KPA was 28. Five months have now elapsed and husband has no appointment date. We have chased this up and get response that there is only one person who looks at test results and there is 6 month wait for this. My husband is in the queue.

Is this normal?

Thank you for any information/advice you might be able to share.

[AyrshireK]

Sadly yes, the NHS waiting lists are pretty long just now.

Despite my hubby having cirrhosis and being under a local gastro he hasn't seen his gastroenterologist since January 2020 - he had a telephone appointment around August 2020 with a registraar. Subsequently we heard the Gastro retired in 2022 with no one taking on his historical patients - we were told he'd been referred to next nearest Gastro doctor in a different hospital in same health board but as a new patient (with not intimation as to wait time!) ............. they've just sent us and appointment for next week (October 2024) BUT in the interim my hubby (who thankfully still had a consultant in Edinburgh overseeing things) has in the intervening years had to have a procedure on his bile duct and deteriorated so badly to the point of needing and having a transplant.

Edinburgh have instructed us to bin the local health board appointment and stick with them for the time being since hubby has now been transplanted. No thanks to local team!!

I'd keep persuing things, put it in writing and send recorded delivery rather than telephoning, letters in a file can come back to bite them in the bum so to speak whereas there are no records of phone calls.

Has your husband had a regular 6 monthly set of bloods and an ultrasound/CT scan?? Chase these up if not as this is the minimum NICE guidelines for monitoring cirrhosis. Despite not seeing local doctors for the past 4 years I was still chasing and getting hubby his 6 monthly bloods and scans.

There isn't any treatment for your hubbies cirrhosis barring the sobriety and keeping himself well but obviously if there are other side effects/symptoms then they need keeping on top of.

Katie

[Orangekangaroo in reply to AyrshireK]

Thank you so much for taking the time to reply, Katie. Yes, it is frustrating and disheartening and feels as if no one cares. I will follow your advice re written complaints and pursuing blood tests and scans.

I hope your husband is doing well.

[AyrshireK in reply to Orangekangaroo]

No necessarily written complaints but a written enquiry as to potential wait time highlighting any concerns you both have about his health.

[Orangekangaroo in reply to AyrshireK]

Thank you, Katie, your replies are so informative and reasonable.

Yes, there is a concern that we have as my husband was due to have a tooth out in August and I suggested he postpone this until after seeing the liver consultant (platelets low). At the time I thought appointment wld be in September so I cld ask about this. He gets repeat abscesses with this tooth so it’s working out the balance of risk ……

Thanks again OK

[Breakfastbabe]

Sadly this happened to us. My husband needs quite regular ascetic drains, however there is no local team and the nearest hospital with a dedicated unit is a long journey away. The first two went fine locally and resulted in a visiting gastroenterologist creating a very thorough set of tests with a review 6 months later. All the tests happened but no review as the guy had left and there is only one visiting consultant once a week now. Then he had to have another drain which we struggled to get done. I kicked up a fuss and told him about the review and we managed to get him booked in as a priority. He saw a doctor he had previously seen in A&E. Otherwise we would probably still be waiting. I wrote to PALS who phoned me the next day and said they would follow it up. I haven't heard anything since. I also wrote to our MP who started to follow up but wasn't reelected. He is due his next drain now. I am not optimistic that anything has changed.

[Orangekangaroo in reply to Breakfastbabe]

Thank you Breakfastbabe for your reply and for sharing your personal experience. It sounds like you and your husband have had a torrid time securing the support and treatment needed.

The system does seem to be like something from a strange novel/film (Kafkaesque?) as it is incomprehensible, impenetrable and inconsistent leaving the patient feeling powerless and insignificant.

Well done in getting your husband the required drain. Hopefully, things will be easier for you next time.

Thank you for the suggestion about involving our MP. This may be a useful option. I will speak with my husband about it.

Thanks again OK

[Breakfastbabe in reply to Orangekangaroo]

In our case the film was Groundhog Day as they kept sending him home. I too hope that you are successful in getting your appointment.

[Orangekangaroo]

Thank you, fingers crossed 🙏