Quite unbelievable....

[Painterlass]

Hello. I'm posting again as someone trying to support my brother. I think I mentioned the shock diagnosis in A&E back end of March (when we thought he had an IBS issue) and subsequent drain and 5 days in hospital, discharged into the care of his GP. Well, since then, he's tried to see his GP for a chat about all of this, no joy. Meanwhile, he's had a follow up with gastro doc at another hospital, and he said, yes still fluid, double the spiro to 200mg a day and come back in 6 months. The fluid is gradually increasing though so he's been trying to see his GP the last 4 weeks. Never any appointments left by the time his call is answered. More than 30 in the queue as soon as phone lines open. I tried for him and receptionist went to speak to a doc and said tell your bro to present himself at A&E and say referred by GP. He did, got examined, xray, bloods done then they said, sorry, no one here qualified to do drain. Go home and ring yr gastro doctor's secretary and make an appt to see him instead at his hospital. That was Weds. He's tried to ring secretary but he's in a queue again of over 30, so he hung up, 'sod it' attutude has kicked in. Frankly I despair. Is this situation happening country wide or just in Worcestershire? It feels like he's been abandoned to just muddle along. I've found out loads of info for him, printed stuff from this excellent site (life saver this website and all you marvelous forum posters) sourced a list of dietary stuff for him. Helped him buy the right foods. At least he can eat a small amount unlike before when he had no room for food. Complan when all else fails. He has an appt end of Aug for dietician. I am frankly bewildered by this. Anyone else experiencing unable to see a GP?

Thanks if you're still reading! I needed to get it off my chest as much as anything! I can't thank you all enough for the lifeline and support you all give.

Plass

[lonmallin50]

When l had fluid build up before my transplant l phone GP even though there were no appointments left explained i had liver disease, they sent me straight to AE with letter they kept me in straight away until they could perform drain couple of days later. your brother really should have the same treatment lm in warwickshire. The fluid was affecting my breathing as well l dont see how a hospital can just turn you away l would go straight back to AE l know its a long wait but demand you want a drain let them keep you in until its done they did with me good luck Lon

[Kingbilly3 in reply to lonmallin50]

As soon is I say I have cirrhosis they all of a sudden have a same day appointment 🤷‍♀️

[Painterlass in reply to Kingbilly3]

I'll bear that in mind!

[lonmallin50 in reply to Kingbilly3]

Yes same as me even when lv rang and they ran out l get one straight away i thought they do the same all round uk

[Painterlass in reply to lonmallin50]

Thank you, Lon, for reply. The hosp did intend to drain but then found out no one there able to do it! So he will keep ringing the secretary. He's upbeat again thankfully.

[Kingbilly3 in reply to Painterlass]

I went in on the Monday was kept in till I got drain was in till 8pm Friday then they said go home no one works weekends to do a drain so basically I was kept in all week for nothing!!

[Painterlass in reply to Kingbilly3]

It feels like Russian roulette...

[Painterlass in reply to lonmallin50]

Thanks Lon. I rang gastro doc's secretary, left voicemail. I'll keep ringing and so is brother. X

[Breakfastbabe]

We have had a similar experience on the Isle of Wight. My husband was drained in February and April at the local hospital. We asked for daycare but was told we had to go to A&E. Both times he was admitted overnight, drain done and sent home following night or morning after that. He was moved around from room to room but otherwise a good, caring service.Roll forward to last week. We went to A&E Weds and they did bloods, put canula in and we thought he'd be admitted. 4pm canula out and sent home. They said they'd ring next day from day care. No phone call so go up again midday Thurs. AAU say its day care, day care say its A&E. We were lucky we knew the receptionist on A&E who pushed his admittance through, bloods taken canula in. She kept badgering the doctor who eventually said 'This is not an emergency it needs to be done through daycare'. He did also say his potassium was high, to come off the Spiro for 5 days and have further bloodtests this week and gave us phone nos for gastro for an appointment. Managed to get one for Thursday . Consultant said he'll book him into daycare urgently as he's put on 2kg (litres)in a week and potassium normal.

I spoke to liver nurse and she said GP has to refer him to A&E as an expected arrival lthough we hadn't had to do that in April. Apparently across the country daycare units are being used as wards due to lack if beds. NHS is crumbling.

[Painterlass in reply to Breakfastbabe]

Hi BB. Sorry to read your experiences. I hope things are settling down a bit? Appreciate you sharing. PL

[taar]

I have found the same in South Wales, easier to see a consultant than a GP. One possible solution..write to Consultant or the secretary or the team if he doesn't have a named consultant and maybe that will help him see someone sooner? Good luck.

[Painterlass in reply to taar]

Thanks Taar. That's worth trying if bro has no luck this week on the phone.

[sunrise20]

What I would suggest is to raise an issue with the PALS team based at the hospital so at least you will be able to speak to someone and have a clear plan.

Is there a liver nurse there that you could talk to as well based at the trust ?

[Painterlass in reply to sunrise20]

Hi Sunrise. Thanks. What does PALS stand for? He was given a number to ring in an emergency situation by the nurse who checked for varices. That was a different hosp. No sign of any, thankfully.

[NieceByMarriage in reply to Painterlass]

nhs.uk/nhs-services/hospita...

[Painterlass in reply to NieceByMarriage]

Thank you so much!

[2022minks]

Thankyou for supporting your brother, he needs support with liver disease and if you are able to make his journey that bit easier by helping I know it will mean alot to him. I cared for my mum who passed from Nash, all I can say is from diagnosis to her end of life phase we only ever saw her hospital consultant for 6monthly appointments. Our only gp support was contact with her diabetic nurse so I would advise trying to contact his consultants secretary, don't give up or feel fobbed off keep ringing and especially if he has worsening symptoms they will be his contact for what medication he is on. Our support from our gp only began once mum entered her end of life care with the community nurse team and they were great. I would say experience of being on your own is very common, having to do your own research on the disease and thankyou to the British Liver support information they were our lifeline. If he is experiencing a lack of contactability from his consultant then as previously mentioned PALS are always very helpful. Xx

[Painterlass in reply to 2022minks]

Thank you Minks. I'm sorry to read of yr mum's journey and passing. I feel v inadequate but help and encourage where I can. I am going with him for an MRI scan at the end of this month as it's at 6pm at local hosp so I can leave work early for that. But I worry about supporting if things deteriorate. I can't afford to stop work and our 87 yo mum is my priority or was... thankfully, she's ok, albeit a bit wobbly on her feet (8 yrs post stroke). I condensed 5 days into 4 so I have Fridays to help our mum. Bro now slots into that day also. Not going to be enough of me to go around! Still, one day at a time... ! xx

[2022minks in reply to Painterlass]

You can only do what you can, but being there however much help you can spare him I know will mean a great deal to him in the fact he is not alone and has someone to even just talk about things to, so even if you are able to attend his 6 monthly check ups is also a second pair of ears, somethings can be too much to take in as a patient. Sending your brother much love ❤ and to you too in dealing with everything xx

[Painterlass in reply to 2022minks]

Oh thank you so much Minks. Xxx

[Kingbilly3]

hi has he not been prescribed furosemide duretics along side his spiro? That’s what I been taking since last march and works a treat but they tried the drains several times and for all my stomach was about to explode the fluid would not drain out so am on both tablets now

[Painterlass in reply to Kingbilly3]

Thanks Billy. I will have to check. He wasn't to begin with but the specialist did prescribe something new to go with doubling his spiro. That appt was a month ago now and I went with bro to that. I asked about another drain then but doc said not keen to do it. His next appt to see him came through for Feb next year! Bro collected new round of meds last week including new stuff. The doc in A&E last Weds said a 2nd drain is quite common, so once done, the meds should keep abdomen from filling so much, I hope. Glad to read yr fluid is under control. That gives hope. Thank you

[BritishLiverTrust8 Moderator British Liver Trust]

Dear Painterlass

If you are in the UK and would find it useful to talk things over, our nurse-led helpline is open Monday to Friday from 9am to 3pm on 0800 652 7330 (excluding bank holidays)

Best wishes

British Liver Trust

[Painterlass in reply to BritishLiverTrust8]

Thank you. Yes, I will do that.

[Painterlass]

Morning! Just wanted to thank you all for your replies and in particular the advice to contact PALS. I emailed them Weds and a lovely lady rang me yesterday morning. She rang my brother, contacted the liver doc's secretary and he's booked in for bloods Monday and a drain on Tues morning first thing! Amazing and invaluable service. Wishing you all a lovely weekend from both of us.