Discrimination: A bit of a rant guys so... - British Liver Trust

British Liver Trust

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Discrimination

60 Replies

A bit of a rant guys so sorry in advance.

I'm sick of medical staff treating hubby like a second class citizen because of the reason for his livet disease. Yes Hubby is an alcoholic, he knows it bit instead of congratulating him on being sober for almost 18months they leave him for hours in pain because he is and I quote. 'An alcoholic'. What difference does that make?. You wouldn't say to someone with COPD who continues to smoke who the nurses even take our for a smoke oxygen cylinders an all (which is stupid as oxygen and a lite flame even Kids know that's not a good idea.) Sorry no pain killers for you as you are a smoker. All pain relief has been authorised by QE all he wanted was a second codeine.

This stay he has had his trousers pulled off him and a tray dumped on his incredibly swollen scrotum and caused it to bleed and him.scream in agony The nurse saying to her colleague 'look own bg his balls are).

He's also was meant to have a drain today has to be done under ultrasound. I chased it at lunchtime it wasn't even booked. He has had his bells ignor2d people have walked past him when he's struggled to the toilet in agony. One senior nurse even pulled out a chair right in f4ont of him and if he wasn't holding my arm he would have been knocked over.

Every single time he goes in for a drain they screw something up usually by not booking it with ultrasound or not ordering Albumin.

They don't take into accountthe fact this is drain number 42, that he is in hospital eve4y 3 weeks to have this done. That he has had SBP twice because they messed up, has been given the wrong drug countless times. My boy has been punished enough.

I just want someone to do there job right. No body should have to go through this a grown man in tears because he is I pain and they ignore him. Asking me to beg to take him home because he is actually scared reduced to this by horrible treatment. Our life is on hold and we just want a bit of compassion and efficient treatment. This is the Royal Berkshire Hospital in Reading by the way and I no.way represents Sidmouth ward (gastro ward) where if you can get a bed are fantastic lovely team who go above and beyond.

Sorry again for rant.

Xx

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60 Replies
Kate50 profile image
Kate50

Hi, this makes me so sad that people can still be made to feel this way by other peoples insensitivities, and I can imagine how frustrating it must be to witness this, I have at times been aware of some hostility towards me because of my liver disease and I have never taken drugs or alcohol, it shouldn't matter how we end up Ill only that we are ill and deserve to be treated fairly same as everyone else, I can feel your pain 🙁,take care of yourself and you're other half , sending cyber hugs 🌸🌸🌸

Hi poppy 86 I feel so sorry at what you and your husband ha v e been put through they wouldn't treat an animal like that I would put in an official complaint as one one should need to get treated the way youse have it an absolute disgrace is their no other hospital you could take him to, I really feel for you both

Love and best wishes cheli xxx

in reply to

Did think of another hospital but is the grass always greener how knows. At least I can get to RBH quickly which is the only bonus. Xxx thank you

grace111 profile image
grace111 in reply to

i think that they are all the same. its not the hospitals its the self righteous people that work in them. sorry to read this poppy. love grace xoxoxo

in reply to grace111

That I do agree with you! ❣🇨🇦

Brummi profile image
Brummi

I'm sure a complaint can be made about the staffs attitude. In my five years since I had my problem not once have I had any complaint about the hospital I go to. As for your rant please fire away ( I have four lady friends ) so I am used to it.....lol

I'm sorry but that is disgusting. The staff on sidmouth ward are lovely...sadly it doesn't carry through to the rest of the hospital. However, there is no excuse for that kind of treatment and personally I'd make a complaint.

When my dad was admitted just before he died his treatment wasn't good until he eventually made it to sidmouth ward. His wasn't through drinking but PSC, but believe me we had to complain, they were going to send him home initially and he died a couple of weeks later.

Is there no way you can get him transferred to sidmouth, they just seem far more compassionate.

Having dealt with the RBH, I do feel for you.

Jacqui x

in reply to

I've tried. I get on really well with the ward sister and phoned her today. She said she would try and maybe do a swap but it all depends on the bed manager and discharges tomorrow. Im going to complain because it's not right. I've seen other patients in a bad way as well. Thank you its not nice to know it's not just me that other people are treated bad but it's still nice that I know that its not just in our heads. Xx

in reply to

Def not in your head. As I said couldn't fault sidmouth but sadly not all the other wards are so nice. Unfortunately I do think some frown upon us alcoholics, but when we've got sober we deserve respect. In fact I bloody command it, makes me angry.

Jacqui xx

in reply to

Damn right because it isn't easy getting and staying sober. Anyone who does it has my utmost respect and always have even before I met Hubby.

I think anyone can be dragged into a habit that turns to an addiction.

Hubby asked one doctor once whether he could perform an Ascitic drain on her when she was plan rude about his illness. Doctor didn't know what to do was pretty funny.

Xx

in reply to

I didn't wake up one morning and decide it was a good idea to try to drink myself into the ground. I went through a traumatic experience and it was my coping mechanism. At no point did I see it taking over me til it was too late.

But I worked damned hard to stop and stay stopped and for that I feel I deserve respect as does your husband.

My opinion anyway.

Good luck to you both, you shout and scream tomorrow.

Thinking of you xxx

in reply to

You definitely deserve respect. Thank you. I'm going try to be calm but who knows if they do something else to him I dont think I can hold back. Definitely going to the top. Thank you I feel calmer now so can think clearer. Xx

in reply to

Hope you're feeling ok this morning and good luck today at the RBH.

Give your husband a big hug and you just keep letting him know how very proud you are of him.

Wishing you both a more positive day.

Jacqui xx

in reply to

I don't understand why doctors nurses whom ever works in the healthcare situation know that alcoholism is a disease and it's an inheritance one! Regardless of whether you drink or you don't drink or you're an alcoholic which my adopted sister wasn't died very young but she was sober for five years she had a five year medallion party shortly after she was at a friends house and under suspicious circumstances went into a coma and died within a week. Are These doctors and nurses uneducated pompous, buggers? I would start educating them myself. Throw it back in their faces!!! I just want to wish everyone a Happy Christmas happy holidays and a healthy prosperous new year love You Love Me❣🇨🇦

I like the idea about contacting CQC I didnt even think of that. Thank you.

That's awful he shouldn't even be a nurse with that attitude. I'm a bit shocked how much discrimination is out there for liver disease. Like the staff don't go for a few drinks after work. I usually sort hubby wash needs out when he can't cos don't trust them.

I would follow up that complaint if I were you.

Xx

in reply to

Got news for you, there's a few medical professionals who are recovering alcoholics in AA!

As secretary at one of my mtgs they've done a 'chair' for me where they share their journey. Not all so bloody perfect! Xxx

susieanna profile image
susieanna

Hi. This doesn't surprise me at all. I have experienced being an inpatient luckily only for 3 days. Most of the nurses were nasty. However one was incredibly kind and another 2 were decent. I cannot really say much about the nasty ones or I would be accused of racism But their attitude was diabolical. Very uncaring indeed. I was in no position mentally to say anything and was in a vulnerable position unfortunately. I do recognise they are very short staffed. But poor patient treatment is not acceptable. How nasty and cruel to say such things about hubby. You don't usually get the care and attention you need in hospital due to lack of nurses or many being agency. I was sat lying in my own faeces for about an hour whilst there. If it were not for this one particular nurse things would have been even worse. I nearly passed out whilst trying to get to the loo cos no one came to help me. Your hubbie and you have my deepest empathy. Nurses are meant to be compassionate and caring. Sadly these days care, Understanding and empathy seem lacking in many cases.

in reply to susieanna

I have to say I have met some fantastic nurses mainly what I class as 'old school' nurses that can't do enough for you. I get they are short staffed however I don't want excuses of which you get if you complain. Plus Hubbys grown intelligent man and gets treated like a child.

I remember once we saw a older man who was unable to swallow and was getting increasingly confused because he was getting dehydrated they basically ignored him and he was treated with Annoyance .it was almost 2days before he was put on a saline drip and the change was dramatic. He went from a confused incontinent emotional man to a sweet gent. However basic needs like being able to reach some drink were ignored. Hubby has always said patients almost need to look out for each other. I feel for people who are alone or vulnerable with no family around at least most of the time Hubby can tell me some people can't.

Don't get me started on how people with mental health conditions are treated.

Xx

in reply to susieanna

It's totally inexcusable to treat any human being with anything less than care, compassion and dignity when they are in a vulnerable state. If these nurses can't find it within themselves to remember why they went into the 'caring profession' I'm sorry, they should re-think their career.

Jacqui xx

in reply to

Absolutely. X

susieanna profile image
susieanna in reply to

Definitely

susieanna profile image
susieanna

Bastard should be sacked and arrested for assault

Hi Poppy

I would complain , this is appalling nursing care , I have met some fantastic health professionals but have experienced some dreadful practice from trained nurses .It makes you wonder what they are actually trained in it doesn't appear to be professional conduct . X

in reply to

We are going to complain. Some things I've witnessed and dealt with are just human decency and respect. We leave our most precious people in there hands we should be able to trust them. When I went in earlier Hubby was so frightened to even ask them to help him go to the loo just in case they hurt him so he waited for me. :(. Making notes of everything and going to get GP and QE updated first. Thank you. Xx

in reply to

You've hit the nail on the head there...'Trusting' these people to 'care' for our loved ones in our absence. We are supposed to feel they are in the best place receiving the best care and I think it's sad when you can't do that, when instead you're out of your mind worrying when you're supposed to be feeling they're in safe hands. There is NO excuse good enough to warrant their behaviour.

Very sad xxx

Jahida profile image
Jahida

Please put a complain through. It doesn't matter how he got his liver disease. He doesn't need to be discriminated against it when he's already going through a lot and has been sober for 18 months. I for some read QE in the beginning and I got worried because I had great care. Local hospitals aren't always great to be honest. They sometimes think they know everything and fail to inform the specialists.

Please do not hold back from complaining and see if you can record some of this discreetly. These nurses need to be exposed. They do not have to be in this profession if it makes them unhappy.

So sorry you're going through all this.

Kind regards

Jahida

in reply to Jahida

Thank you. Hubby's mission today is to write down everything that he can remember whilst it's fresh. I have names times dates. I would say to anyone qu3stion everything and keep notes. We learnt to late that not everything is what it seems. Xx

LAJ123 profile image
LAJ123

Poppy,

Its dreadful for you to receive such disrespect from those who should care for you.

There is a term used within nursing and other 'caring' professions;

'unconditional positive regard' This requires the 'carer' to work with 'acceptance and support of a person regardless of what the person says or does'.

It is as well to remember that every registered nurse is accountable for their own professional conduct and are bound by statute to uphold a code of conduct. You can find that in the link at the end of this post.

Any member of the public have the right to complain directly to the Nursing and Midwifery Council who can discipline any nurse on the register.

This is obviously a last resort, but sometimes nurses need to be reminded they are accountable to the NMC / the public before they are accountable to their employer.

This is why you should always ask anybody involved in your care to introduce themselves by name, you should also be aware if they are a registered nurse or a nursing assistant. That doesnt take away the value and importance of nursing assistants.

You should copy your post and take it to the Patient and Liaison Service (PALS) at your hospital and ask that they look into it for you.

Take care,

Jim and Lucy

nmc.org.uk/globalassets/sit...

I should just like to say, I have been treated for numerous things over the years at different hospitals and have been told to be quiet and stop crying (when in enormous pain and waiting for pain relief- morphine required) as I was disturbing other patients, who were asleep. Also to stop crying after being told some very bad news, and ushered into a broom cupboard so other patients could not see me. So I don't feel it is necessarily discrimination, but poor patient care by nurses who simply hate their job or have become disillusioned with it/NHS.

It is of course terrible that your husband has had such poor patient care, but even recently I have had poor patient care and I have liver problems which have come about through an overactive immune system. I overheard a nurse saying he didn't want to treat me because I had been horrible to him (when I don't actually remember even seeing him before). Who knows why these nurses are in the profession if they feel so impatient towards the people they are supposed to care for. At the time I was in hospital for another ailment- so it was nothing to do with my liver, but still when this nurse came to my bed to simply carry out obs, he walked off and refused to do them. They were done by another nurse. Clearly he was unaware that I had heard what was going on, but felt able to refuse to do even a simple job!!

Of course it is always easy for people to judge, but maybe they would feel differently if on the receiving end of their own "care". I wish you and your husband the very best with ongoing care and hope that you find someone to look after him that actually believes in their profession.

Should just like to add I have also received very good care from some very caring professionals, but sometimes feel like I have been treated like a moron by doctors and nurses. By the law of averages, you will meet good and bad in every profession. My new GP is an absolute star and I for one am very glad that he treats me with care. I can't help feeling that there are some departments that are lead one way from the top. Thankfully they are more than counterbalanced by staff who actually know how to run a caring department.

in reply to

I agree that there are wonderful caring professionals out there. It's a shame the bad ones being everyone down. We always try and praise the good guys. I can't believe they ushered you into a broom cupboard that awful. If I see someone in tears I want to give them a hug and find out what's wrong regardless of who they are. I thought that was just human nature :( x

in reply to

My sentiments entirely.....It costs nothing to be kind does it 😘

Jacqui xx

in reply to

Maybe some people believe the lyrics to that song "you gotta be cruel to be kind" !!!!

in reply to

Lol... 'tough love'. Gotta laugh

in reply to

And performing for you today at the RBH, please give a round of applause for the one and only SID VICIOUS!!

in reply to

Yea...wonder if their middle names 'sadistic'!!!

in reply to

Lol... my boys on Sidmouth now. Already seems better. Yay. Xx

in reply to

Yay, I am so very pleased to hear that. Great, let's hope he starts to improve now with the right care. You must be so relieved 😊 Xxx

in reply to

I know he will be okay tonight so I'm happy. He's so much calmer already back to his cheeky charming old self. Teasing the staff. Lol

X

in reply to

That's good news, I'm so pleased for both of you 😊 and a bit of laughter will go a long way in him recovering xx

I'm there at 10am tomorrow, cycle 5 of my mums chemo, King Edward ward xxx

in reply to

You are right laughter is the best medicine. I left a scared timid little boy this morning and came back to a cheeky flirty little sod. Love it. Good luck for tomorrow for u and ur mum. Hope all goes well. Xx

in reply to

Thank you xxx

I genuinely am so pleased xxx

in reply to

Hurray! :)

in reply to

Thank you. X

I worked as a teacher for many years and actually heard other teachers admitting they hate children, but still did not leave the profession. Maybe this is how a few people in the NHS feel about patients! Yes- the broom cupboard. I wonder where that featured in the training manual lol :) Hope things improve dramatically for you and hubby.

Lperica10 profile image
Lperica10

Definitely report it. They need to know. I never got around to report a nurse on the day of my dads death. Wondering now if it's too late 2 mos later. But overall my dad was in and out of hospitals and the nurses and doctors and staff were great. A few not so great ones but you'll have that. Also- I did feel after repeated noncompliance and drinking over the years didn't affect the way they treated him just something about some of their attitudes. But he did discharge himself not take medicine drink and go against medical orders. So I don't know they were doing anything wrong but I could tell the ones that knew him for a while had a different attitude toward the situation than the ones that just met him-(spend more time and more patient). Good luck to you. Let us know.

in reply to Lperica10

Thank you. I don't think it's to late at the end of the day you were are still are grieving. It's probably better to wait until your emotions are more in check first anyway. I think that people need to say something because if it prevents things happening to other people it's worth it. Take care. Xx

Lperica10 profile image
Lperica10 in reply to

Thank you. Now I just have to find/figure out the nurses name. It was such an emotional day I didn't get it.

in reply to Lperica10

I'm not surprised. I guess if you can't remember the names then write a detailed account anyway. We had to complain about another incident with Hubby a few months back same department different ward. The matron tracked who it was by a description and rough times dates etc. She phoned us to check details. Write as much info as you remember. I sent our email to PALS and they forwarded it on to the Matron. Good luck. Xx

Lperica10 profile image
Lperica10 in reply to

Thank you. I can definitely do that and figured they can take the day and shift because it was the day he passed in the ICU and she only had him and one other patient. So I don't think it could be that hard. (I am not one to file complaints and I am always nice and give people the benefit of the doubt etc so for me to complain it was BAD).

Geffy22 profile image
Geffy22

Aw that's terrible complain, complain, complain. Pull them up - they have a safe guarding duty. Just say it how you've said it here - anyone can make bad choices, he's been alcohol free for .... Months. He's realised his error, so now needs to be shown some compassion, he's poorly, please don't be disrespectful. If that doesn't work, tell them they have a duty under safguarding and that you'll bring in social services if you need to...

They do sound like a right shower behaving that way but if the leader does it the nurses will follow.

I hate how judgemental the NHS has become - people are over weight, see a nurse who overweight who then goes on at them about their weight! If it happened to me is be saying something!

Good luck hun, it's tough but hang in there. X

in reply to Geffy22

Thank you. Xx

Smartbob1 profile image
Smartbob1

How bloody cruel and heartless, there for the grace of god go they. Some places are like this a yet others are caring and compassionate. I would write to the local paper if I were you. 18 months is amazing and he deserves better. xxxxxxxxx

in reply to Smartbob1

Thank you. I'm so proud of him. Xx

Smartbob1 profile image
Smartbob1

So am I and I dont know him xxxxx

Dear POPPY

Please do not apologise - you are quite entitled to your 'rant', as shown by the replies this is one of the main reasons for this forum and for you to get support from people who can truly empathise with the awful care and support you and your husband have received

I know that finding time can be very difficult but please can I encourage you to cut and paste what you have put on here and send it with an explanatory note to both the chairman and CEO of the Royal Berkshire Hospital ( graham.sims@royalberkshire.nhs.uk

and mary.sherry@royalberkshire.nhs.uk

) - the more we make those at the top know of the appalling situations many patients and carers find themselves in due to the inadequate and/or discriminatory care of their organisations the better!

In addition please add your comments to the Care Quality Commission's website - cqc.org.uk/share-your-exper... - it will be taken into consideration when they next inspect the hospital

It maybe difficult to find the time to do this so please do not worry if you can't get around to it but if you can it is worthwhile and may give the kick up the backsides that encourages improvements so that care throughout the hospital is as good as that on Sidmouth Ward.

very best wishes

Andrew

Andrew Langford, Chief Executive, British Liver Trust

I can relate to the stigma attached to my liver disease. Never drank alcohol growing up, had a great job lasted thirty years with this relentless condition, tried 3clinical trials only to lose another functioning organ, loss 45% of hearing in both ears, skin that continual itch from the scalp to the toes, etc go into emerg made me feel horrible by asking first thing "Are you an alcoholic?" Not how did you contract the disease and when I tell him through the blood transfusion sounds like a snicker to them. I've had somebody on the hepatology lab in the Scarborough General hospital write to my doctor one day stating oh she says she doesn't drink but the nurses and I feel that she might be fibbing. When I was able to read that letter, I cried. I've just won the compensation package to prove that I did get it from the transfusion and I'm caring that around me where ever I go. If I really need to go see a doctor specialist I go downtown hospitals they treat me better or Scarborough Grace or even RougeValley. However I think they do know because they test me for drugs and alcohol every single time they must think I'm stupid. I've been fighting this disease for over 30 to 35 years now! I think of I know a little bit more than they do especially the interns. I have always been pretty well a single parent, so I don't have any advocates other than my son now that he's grown up but does have some other conditions. And a daughter who's pregnant I can't come with me. Even my son got really angry walked into the nurses station. Finding out all they were doing was chitchatting among themselves about their lives, and there were no patients inside the rooms so they were lying they just left us out there in pain. There's only one hospital I can honestly say is like that and that Scarborough General Hospital and Toronto Canada. So you see it happens everywhere not only in the UK and I feel really really bad for your hubby because I know what it's like to be in pain and not being able to access anything because of the stigma attached to whatever you have. All I can tell him is keep your head up high and be proud of your achievements and go to another hospital if you can. Happy holidays wishing everybody the same love pain-free and peace for the next new year ❣🇨🇦

in reply to

Thank you so much. Happy holidays to you to hun. Xx

I understand your feelings and concerns completely. You have every right to complain and I suggest that if want to change things you should complain officially to the Hospital. I had to do this for my mother and it made the difference but you have to be prepared to stand your ground and follow it through to the end. Good Luck.

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