Frustrated with hospital

[Leia01]

I first posted on here back in February when my husband ended up in ICU with a severe gastric bleed and ended up getting an emergency TIPSS procedure.He ended up back in hospital the next day after being released from hospital after 2 weeks as took another bleed and had a further blood transfusion.

I have been extremely frustrated as couldn’t visit him on re-admission to hospital at that time due to COVID closing ward. I have still as his wife to have a conversation with a consultant to discuss what happened to him.

He was discharged from hospital the first time as he had his 1st appointment with his consultant the following week so they were happy he was seeing his own consultant then. This didn’t happen because of re-admission to hospital and consultant didn’t visit him in the ward.

He was then given a further appointment after contacting secretary at the end of March as was extremely worried about everything & what was the future going forward I also had several questions about some things leading up to his ending up in intensive care. That again was cancelled because of COVID.

He has been seeing Liver nurse but again this can be frustrating as if any problems it can be hard to get in contact as to be honest I think they are short- staffed at the moment. He had been put on carvedilol but it was dropping his BP and making him dizzy trying to get medical advice has been a nightmare and eventually had to call GP who said he would email consultant he didn’t even ask my husband to come to the surgery ( he hasn’t seen his GP since the day he sent him to A&E in November) told him to stop taking that medication. Liver nurse clarified this and will see how things go!! GP didn’t even do a follow up call to see how he was coping

At an appointment with Liver nurse at the start of April we again emphasised we wanted to see consultant as soon as possible as she always discussed with him results of bloods etc.

Consultant then called my husband later on that week out of the blue that he will try to see him as soon as possible but bloods are looking good and all ascites is gone so Tipss working well but he is going to write to transplant team in Edinburgh for an assessment to be done. To be honest this took my husband by surprise a) to get a phone call from consultant b) to be then told that, so wasn’t prepared to ask any questions apart from when would this happen.

We are still waiting to hear from them re appointment but consultant advised it shouldn’t be too long.

Since then my husband has seen the Liver nurse agin and delighted that last bloods that were taken there is a lot of improvement shown in his liver , blood count and kidneys are doing really well. He is looking a lot better, managing to get about more & his appetite has improved.

However been trying to get an appointment with the consultant has been a nightmare and then a letter came through this week and will not see him until August.! Husband has called and see if they can see him sooner but no joy!

I am of course happy that my husband is getting better but at the same time I am aware how things can change and how quickly that can happen no one has taken the time to sit down and explain everything that happened during a very traumatic time and the plan going forward.

I was advised when husband in ICU not to Google anything but thank god for it because I now understand a lot more of the conditions my husband ended up with, with a lot of information gained from this website. However it leaves us both with unanswered questions as I believe there were several red flags before my husband became really ill.

Sorry for the long rant but been a long couple of months and wondered if anyone else been struggling with hospital appointments

[Aotea2012]

Hospital appointments are tricky at the moment. There is a huge backlog in the NHS which everyone is dealing with...so my six monthly reviews have now turned into 8 monthly! Personally, I’m not too bothered as I’m feeling well. It sounds like your husband’s liver nurse is acting as the conduit. Once you raised the fact with her that there’d been no contact with the consultant...hey presto your husband got a call! It means he’s is in the background overseeing his care with the liver nurse doing the work ups; getting bloods done and checking your husbands overall health. Specialist liver nurses are very experienced and will know when to escalate to the consultant if there’s a problem. It’s simply the way your husband’s consultant is managing your husband’s care. It may be worth you or your husband contacting the liver nurse with your questions as she’ll be able to answer them. She’ll also be able to find out where he is on the list for the transplant team to assess him. Try to relax a bit. It’s great your husband is improving. Liver disease is a strange thing as the liver is so resilient that it can improve, even with damage, which means that the doctors and nurses are always playing a waiting game. They are often surprised that people improve so much. It may well be that by the time your husband gets assessed for transplant he’ll be too well to be accepted and that your husband’s consultant was trying to cover all bases from when he first presented to hospital.

[Wordesley]

Trying to get an consultant appointment is awful. I pushed my GP for a referral after a bad fibroscan result and I received a letter from hepatology stating they are putting patients on a waiting list for appointments. Had a letter a couple of days ago with an appointment for October...and that is only a telephone consultation!

[oap74]

I had an appointment with my liver consultant then another was sent from another hospital for my legs which clashed with the liver one, so I rang and told them and gave me one for June 3 months ahead, couple of days later liver was put back a week, so rang legs and asked if I could keep my original but no they couldn’t. So I asked if they had a cancellation list as I’m retired and can come any time, no they don’t have one but I can ring any time to see. Two weeks later I ring on a Wednesday and wow they have one for Friday, so I go and all is done for now. Then another appointment comes for liver two weeks earlier which at present is next Friday, but I’m not holding my breath still time for yet another change. My advice is to just keep ringing weekly for a cancellation. Because the whole system appears to be in chaos. Good Luck.