Frustrating ....update

Hi all,

Hope all are still fighting on.

I feel we have been let down again by people just not doing there jobs right.

Firstly hubby saw the addiction nurse as part of assessment and saw her again in clinic last week. During the appointment she said that she wanted him to engage in an alcohol service and sent him a letter back in July. She then gave him a hard time for not going to any meetings yet. However we didn't even know, the letter wasn't even sent to us but his consultant only!! Claimed it was an admin error He is more than happy to go to AA but to be lectured on something you didn't even know about then blame admin is ridiculous.

Secondly and this is the worse and I'm livid to be honest.

As part of his assessment he was referred to a cardiologist for a stRess test and to check out a slight abnormality, this was all to take place in our local hospital. We were under the impression that they would contact the hospital directly and I have been chasing both hospitals for the last 5_-6 weeks. QE said that a referral hadn't happened yet and they would chase the consultant about 4 weeks ago. Been chasing every week with GP, QE and local hospital and hitting a brick wall. Found out last week that on the 14th July a letter asking our GP to refer him was typed. First we've heard of this!! Phoned surgery and a referral had Been made the day before. 6 weeks to action a urgent referral is ridiculous even for the NHS. I'm right in thinking that aren't I?

Thankfully hubby is in a good place at the moment gaing weight and stable but we all know the liver is tricky and things can change quickly. It's still not the point though!!

When you question what happened they 'handle you' with insensere appologises and excuse. It's ok for them they get to go home. Anyone like is with a chronic illness don't get to escape from it 24/7 for us.

I feel let down by everyone. QE, local hospital and especially our GP. I have explained the situation to her count less times I even chAnged GPs as the other one wasn't good and she knew this.

The consultants who screwed up his original referral by 6 months are also trying to take credit for his being assessed . Wasnt even them it was a combination of me, and the lovely Secretary of Doc Mutimer the begining of this year.

Another delay by incompetence it's a life threatening condition and I feel just isn't taken seriously enough. The side affects alone can be a full time job and I think I've been lucky compared to some of the rest of you guys.

Sick of being 'handled' and just want people to do there jobs right, not much to ask right!!!! In the meantime my poor boy suffers.

Sorry for rant but don't know what else to do. Going to complain to pals I think but Hubbys worried they will use it against him I'm not surprised he feels this way. We have seen some awful treatment.

Love to all


16 Replies

  • Hi Poppy, sorry to hear of more problems you are having and certainly don't need; It is my understanding that if an urgent referral is made, the patient should be seen within 2 weeks. I feel treatment re NHS/ GP's does vary; sometimes you get excellent services other times not good; it certainly sounds you have had more of the latter experiences unfortunately. I myself am waiting for an ultrasound and doppler portal system thing since being in Hospital nearly a month ago; but still heard nothing. We are lucky to have the NHS but sometimes the admin side is horrific; cutbacks leave long waiting times; but this is no excuse for the alcohol nurse to have a go at your husband when as you say you never even got the letter! Its no exuse re NHS staff attitudes at times; I was treated very well by some Nurses; one in particular who was amazing, a couple others were plain nasty. I do understand and see how overworked they are; but a couple were basically quite lazy; i'm not even joking. The consultant was very good. I woudn't have thought PALS would use anything against hubby. Good to hear hubby is in a 'good place' at this time. Is it essential you stick with treatment at QE? All said however, we are still very lucky to have the NHS.

  • I love the NHS in an emergency can't be faulted!! I've met some fantastic people who will do anything for you and people who are the complete opposite.

    Administration is so frustrating. Still a massive fan of the NHS and know there is no way we could do all this privately.

    However, we have been let down a lot recently and I just want someone to take responsibility and not lie to us.

    Got to keep going are both way to stubborn to give up now.


  • Hi Poppy, hang on in there 😊 The NHS is a fantastic service but the attitude of some staff is appalling and begs the question why they opted to work in a caring profession. Thankfully your husband is in a good place at the moment , I hope you get a good outcome 😊 Xx

  • Hello poppy. So sorry to hear of your trials and tribulations. It,s not important with all that you have on your plate but I wondered if the addiction nurse told you that any alcohol addiction treatment cauld be engaged or referred only to A.A. I must admit I have a right old Bee in my bonnet at the moment over that, and it seems to be becoming quite an issue with people feeling as though they have no choice and as you pointed out the worry that it may be used against your getting treatment. I fought, but am sure I only got my Hep treatment because a nurse stuck her neck out for me. I have no problems per se with A.A if people use it and it works for them. It,s the issue of choice and people left feeling threatened. And it,s getting worse especially in the states with cases of children being removed from parents, and others refused parole ect because of non.compliance. And it,s coming our way seemingly unchallenged, despite claims ( which I know nothing about,) regarding Cult like practices. For me it is the matter of choice or lack of, that bugs me so much. Way too much of a clique, bit like trying to join the women doing the alter flowers (and have been for the last 17yrs!) Antway, sorry to waffle on so just wondered about your experiences. I hope you manage to get your other issues resolved soon. All my best wishes to you both. Hope it works out o.k. Yours anne .Keep up the fight!

  • It did feel like you have to do this cos your a bad alcoholic!! He's not into AA either but will give it a go. X

  • Hi, in the UK, there is alot more than AA, in most places. Personally i am not a fan of AA; i tried it, but it just wasn't for me; though for some its suits them and helps them; we have local services in London and most parts of the UK ran by other charities/ organisations and local councils etc; is this not available in USA?

  • Yes there is Smart recovery but no groups in our area. There is also IRIS that the GPS refer people to however it is a drop in and Hubby has actually done some volunteer alcohol and drug counselling with them and knows the clients so would you feel comfy going there. (He had a 2 year break from drinking and did it then to help him and them). The frustration with AA is that they only have an evening group 8 -9.30pm he isn't particularly good in the evening. He's going to try though but we shall see. He's also been given a 'work book' to do. He's done so well so far and is determined to share his story when he's better to stop other people falling into the trap of 'it won't happen to me'. Thank you. Xx

  • Don,t quote me on this poppy because I,ve not looked into it, but if hubby wants to I would imagine that A.A has some sort of online group going. They seem pretty organised and there must be housebound people who use them. As for the Stress Test, good grief, I should think that both of you have proven you cauld pass that! What always runs through my mind with stories like yours is what would have happened if your hubby didn,t have you to sort things out for him? I know you don,t mind doing it but that,s not the point. I helped care for someone with dementia 24/7 for 8yrs, saved the state a fortune by not using a home. when a break was desperately needed the walls the N.H.S put up made a weeks holiday impossible. Similarly, at the height of my problems if I hadn,t of had such a good friend I would be dead now no two ways about it. Hang on in there, and vent as much as you need. Anyway, check out the online thing if that helps. Regards to you both, anne x

  • Hi there.

    Just a quick note, as I am recovering myself, and yes, it's because of AA. I personally have only have very good experiences. I just celebrated 8 years on 9/11.

    There is an app called "Steps Away". It will tell you where all your local 12 step meetings are along with maps and directions.

    Regardless of what you choose, type yourself up a sheet and print it out. Ask people at meetings to sign it, showing the date and time and their signature..It could be John B. pr Cindy O. Everyone knows that the program is anonymous. It can be something that shows up to 30 meetings or 10..whatever you choose.

    I'm sorry you are going through all this. Did your partner relapse? I'm surprised after all this time that they would ask him to attend any type of meeting. Or, show that he is?

    But who knows? I guess every assessment group is different.

    Good luck!


  • Thank you. No he hasn't relapsed and has been sober since July 2015. The mental health specialist spoke to our GP surgery who said that he had had countless relapses which isn't accurate but kind of his fault cos he lied and said he wasn't drinking when he was. I think AA is a good thing to get support. We have both discussed that fact that there always is a risk that any alcoholic could start drinking again. You just have to learn better support groups and coping mechanisms.

    How are you doing now? Xx

  • ahhhh, well, sadly, they will look at his dishonesty first. Not how much time he has now. Only because it truly is such a waste to give over these precious organs to people who don't seem to value life enough. The largest percentage of liver Tx's done are for ex alkies. Which means someone else, who has NEVER had a drinking problem might miss their chance to live, instead of someone who will just throw it away. It's a hard truth, and I in no way mean to diminish your hubby's liver disease. I'm sure you already know all this. This is why I recommend getting these slips signed. Start today. no matter what kind of help you seek. Start today and keep track. If they see you are making a sincere effort, that truly will help!

    As for me, not so good. My new liver will fail. That's just mechanics. I'm not sure if I'll be put back on the list again, or if I will even qualify.

    But that's ok. I am very very grateful for all the care I have gotten. The NHS saved my life, literally. :)

    To be honest, I cant believe I ever got a new liver to begin with. I'm just so grateful that I have gotten this extra time with my family and whatever I might have left! :)

    good luck!


    cheering you on!


  • Yeah I completely understand and he will never be given another chance as amazing as this one he knows it!! I also wouldn't give him a second chance either. Wasting a gift as precious as a new organ doesn't even bare thinking about. I have the up most respect for the liver!!

    I'm so sorry to hear your news it's awful luck. Even after ever thing you've been through you keep such a positive attitude which is amazing.

    I hope that you are listed again or given the opportunity.

    Thinking of you and hope you get to stay out of hospital and well enough to enjoy life.


  • Hi, It seems strange to hear about these incompetent goings on at the QE, in going there for the last 5 years I have never had one problem. However I have a heart defect and my transplant still went ahead. If you ever want to let off and rant you can always rant at me, I will not get offended. Take care.

  • Thank you.

    To be fair on the QE they always done there bit and been great, apart from a misunderstanding regarding his referrals. They had done it just didn't realise that they had. Admin error but at least they had done it.

    It seems to be our local hospital and GP that have caused problems and delays. GP surgery I am not happy with because they lied and just weren't at all helpful. Going to ask to see all his notes at some point to get to the bottom of it but we shall wait and see.

    Just want to focus on him now get him on that list.


  • I feel your frustration, it's so hard keeping on top of it all - thank goodness he has you. My advice would be to feedback to PALS because this is one of the ways that the NHS tries to improve their service. It won't be held against him. My sister and I have experienced no end of cock ups with my father's care - ive even fed back to the CQC. At the end of the day the NHS is at breaking point and it is in our best interests to be vigilant regarding the care of our loved ones. Request to be copied in with ALL communication from now on, take notes at each appointment and ask specifics such as when and where etc then if something appears to have been missed you can chase them sooner rather than later. X

  • Thank you. Xx

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