"A letter to patients with chronic dis... - British Liver Trust

British Liver Trust

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"A letter to patients with chronic disease"

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Hidden

Willow's first post set me to find this which was posted on another site by a kind person who shares what she find that may interest and help anyone. It helped me. I hope it helps you.

more-distractible.org/musin...

If this hasn't made a link to the letter, could the person who showed me how to do it please remind me? Thank you!

60 Replies
Trust1
Trust1Administrator

Thank you for sharing this Hidden

Hidden
Hidden in reply to Trust1

It's my pleasure. Miles taught me how to make the link, and my memory worked well enough to find this and put it up on the Wonderwall! :-)

Trust1
Trust1Administrator in reply to Hidden

He is pretty useful our Miles!! ;)

Hidden
Hidden in reply to Trust1

Agreed! :-)

Hi filly

Link works, 👍

Interesting points, and very good ones. My little eensy comments 😑

Not all doctors are insecure and may also not be at all interested in you. I have had a very recent Consultant who was arrogant and derogatory to me in front of the others in the ward (in an open ward and in a loud voice - why are you still here? It was only a tiny incision - hmm, yes only 7” long.. two days in a row - as if it was my decision why I was still there - not.)

And I’ve got to see him again in 4 weeks time - how do you get to see a different Consultant in that case, I ask? Answers on a post card - gosh that’s showing my age 🤫 🙂.

Milo

Hidden
Hidden in reply to ThreeSmiles

I'm sorry you had that to put up with on top of the medical/surgical issues. You can't wait 'til we find postcards (or can afford stamps) for that one Miles. It is sad, but not surprising that some doctors are not good at understanding how to treat people. In your position I would either decide if I could tell that Consultant how humiliated you felt at being called out in public for what was clearly not your fault, OR, speak to PALS and say that you wish to see someone else because of how this doctor behaved toward you.

If you don't address this one way or another it will affect how you feel about yourself and doctors. It helps me to assume they will always be reasonable, even when experience proves they are not. Again I am sorry, especially to have reminded you of how uncaring and hurtful that doctor was.

ThreeSmiles
ThreeSmiles in reply to Hidden

I have considered both options at length, frequently day and night 😀. I did think of what I would say to PALS but confess I never thought of asking them if I could see a different Consultant. Good thinking I’ll try and work out if I can go through the stress of making a complaint - because that isn’t in my nature - honestly 😀.

If I do end up seeing him I will definitely tell him how embarrassed he made me!

Thanks for your response Phyllis 👍

Miles

Trust1
Trust1Administrator in reply to ThreeSmiles

Sorry to read that you saw a consultant who was rude to you. There is never any excuse for a health care professional to treat you in a derogatory manner.

PALS would be able to advise on this, and you are also within your rights to request an alternative consultant if you wish, again PALS can help with that.

Take care

Trust1

ThreeSmiles
ThreeSmiles in reply to Trust1

Ah Thank you 👍 Trust1 R.....

I wasn’t joking when I said I don’t like complaining but maybe I will make an exception for this because I don’t want to say anything I may regret if I have to see him again!

Thanks

Miles

Hidden
Hidden in reply to ThreeSmiles

I think you need to do this - you have been affected quite seriously. I've thought you've not been fully 'Miles' since that op. I 've twice challenged rude doctors and each time feared I may be sick, have a heart attack or burst into sobs or swear at them, but I didn't. Both times they backed right down and conceded. I didn't enjoy it by any means but I did feel stronger for it and more confident that I can rely on myself not to 'take it lying down' anymore.

ThreeSmiles
ThreeSmiles in reply to Hidden

Good for you 👍 Phyllis!

Hidden
Hidden in reply to ThreeSmiles

There was a large number of times in the past when I did take it though... :-) and it could happen again.

Hidden
Hidden in reply to Hidden

It's nice to be nice.

Recall the 08:30 visit to the GP to ask for help with alcohol withdrawal. It was the morning after my old mates funeral, a long day. The Dr smelt alcohol & bit the head of me. I made a stand, bit back explaining the reason., quote," So you don't want to help." and stormed out. Wasn't to long after I got a phone call asking me to come back. Such a change in attitude. Both @ fault I admit.

Had a few occasions to complain to a Private Hospital about the Consultant & staff. Flowers for my wife and no charge for b&b on the next visit. Use NICE quotes.

National Institute for Health and Care Excellence

Hidden
Hidden in reply to ThreeSmiles

And respect for managing to explain to me how to make a link and upload a picture. Many have tried... I'm not an easy learner, and sometimes not even a willing one. :-)

Hidden
Hidden in reply to Hidden

also, go back to the letter at point number 6 "don't put up with jerks" :-)

ThreeSmiles
ThreeSmiles in reply to Hidden

Jerks - yes - even more so arrogant jerks - I had a ruder word in mind but better not 🤫

Hidden
Hidden in reply to ThreeSmiles

well held back then! I sympathise and have axiety attimes that I'm going to say them aloud when I'm really angry and stuck to express my thoughts when I or someone else is treated rudely and unfairly. :-)

ThreeSmiles
ThreeSmiles in reply to Hidden

😀😀 hehe you learnt first time!! 👍

Hidden
Hidden in reply to ThreeSmiles

I was well taught then! And you say it's your wife who's the teacher.

Hidden
Hidden in reply to Hidden

Some light reading. Haven't managed all replies. He's sort of coming from a place where you used to have your own dedicated Dr.

Ours works on triage. Ring before 11am Dr usually the one on call will ring back anytime during the day and decide if you need to be seen, then give you a time & it's pot luck who you get. Dr 1 can be abrasive & only deals with one thing at a time. 2 & 3 make you bite back. 4 & 5 simples to get on with.

I've said before the trainees are better.

ThreeSmiles
ThreeSmiles in reply to Hidden

Ring after 8 and you have had it with an appointment for that day. Try again phoning tomorrow or preferably go and camp on the doorstep - first in line - for opening spot on 0800. Alternatively wait two weeks for an appointment.

I have to say we must be lucky with our 7 or 8 doctors. Poor you ofeck.

davianne
davianne in reply to ThreeSmiles

Miles,

I find that fellow sufferers are the only ones who truly understand the daily trials we have to endure, much, much more than family and friends

I think maybe that if our consultant hepatologists, were to join this forum, and read some of the posts, they might have a better insight to our daily issues. Maybe there are some lurking on here, and, if so, all credit to them.

David

ThreeSmiles
ThreeSmiles in reply to davianne

Too right David - absolutely in fact. A lot of sympathy when you’re in Hospital but the recuperation takes a bye (or is that a by.) . But tbh I think I am just the same and none of my family have time to think about others all the time - fully at least. I mean when you’re working and have your own family you have got enough of your own worries, don’t you?!

Good point about Consultants - maybe there are indeed a few in disguise on here 😀 - I mean for all we know you could be one, David 😀😀😀

Milo

davianne
davianne in reply to ThreeSmiles

Miles, I couldn't possibly comment 🤣🤣🤣

Hidden
Hidden in reply to ThreeSmiles

You hit the nail on the head with 'busy lives' - it can stop people being kinder to each other. It maybe that some people even brace themselves not to understand what someone else suffers because they think they haven't got time to do anything to help. No-one wants pity, but compassion is a great healer for the giver and receiver?

Hidden
Hidden in reply to davianne

Thank you for your reply David. I agree it would be good if they knew how we experience their treatment. I doubt if they have time to read the walls, but it might be useful to them in their training so they could get off to a better start and build on it.

A few days ago I had to cancel meeting a friend and it made me think. No one who doesn't have this problem knows what it is like when your colon stops for a couple of days or more. You do all you can and all you've been advised to get it going again (that could take a day to explain!) When you get it going you need to manage bowel movements of as many feet as your bowel is long. It pretty much means you want to be home alone when you want to be out with your friend. Once is bad. Habitually just wears us away unless we have this place.

davianne
davianne in reply to Hidden

You are so right Fili. Even though my wife is a retired Matron, she thinks when I say I'm having a bad day, so don't want to go out, she thinks I'm being awkward and antisocial. I have learned the hard way to ignore these comments. I got caught short in a restaurant once, and the consequences were dire, so I now only do what I want to......selfish or not.

Why would I want to socialise when I'm in pain? I can only put a brave face on it for a short while.

David

Hidden
Hidden in reply to davianne

Having a partner makes some things more difficult - not having one makes some things more difficult. We have to keep looking for what works, and keep sharing our findings! Talking honestly works but it's hard to know where to start (or stop)

davianne
davianne in reply to Hidden

It certainly is difficult Fili. A lot of our friends are nurses and doctors, and are somewhat sympathetic, but that's not what I want or need. For them it's just "talking shop", but for me it's life changing.

I tend not to discuss it much with anyone outside of this forum, it's easier that way.

David

Hidden
Hidden in reply to davianne

I agree - acceptance is all we want from friends and family - understanding we get that here.

davianne
davianne in reply to Hidden

Spot on Fili👍👍👍

ThreeSmiles
ThreeSmiles in reply to davianne

And you a Consultant David and even then you can’t get your ex Matron wife to understand....

.

Sorry I’m not meaning to be flippant - it’s a very serious subject I know 😕.....

davianne
davianne in reply to ThreeSmiles

Don't worry Miles, it's the fun that makes it bearable.

Our medical friends all say they leave sympathy at work for their patients,

so basically........sod you🤣🤣🤣

Hidden
Hidden in reply to davianne

That's very interesting David... they don't need to think we want their sympathy. Sometimes we'd like some of their knowledge from experience. Maybe they leave that at work, too. :-)

davianne
davianne in reply to Hidden

Hi Fili,

I think it's because they are just so stressed at work. They deal with suffering patients all day, so maybe have become immune. They have a basic knowledge of liver disease, and so stopped short of suggesting suitable liver friendly pain relief. All I need is an answer from somebody qualified, and confident in their knowledge, to tell me what pain relief I can take. It seems, it's too much to ask for, even from my consultant.

David

davianne
davianne in reply to Hidden

Forgot to add.....one of my friends is even an anesthetist!!!!!!, but would not commit to an answer.

Hidden
Hidden in reply to ThreeSmiles

That was the old days Miles - I had a consultant tell me he 'wouldn't dare' interfere with how the ward is run, and I witnessed a Sister tell a consultant that she couldn't allow him to have any more iv paracetamol stands put up for patients who couldn't take it by mouth. He dealt with it well, but imagine the situation...

davianne
davianne in reply to Hidden

Those were the days when Matron's word was law 👩‍⚕️👩‍⚕️👩‍⚕️😊😊😊

Hidden
Hidden in reply to davianne

Shellfish or not?

ThreeSmiles
ThreeSmiles in reply to Hidden

Oh my filly. 😕. That sounds tough as hell 😕.

Hidden
Hidden in reply to ThreeSmiles

Thank you Miles. It's not fun. Do you remember Lady Penelope? I could have cried at what she endures all the time. I wanted to reply "Is it Parker's day off, surely that's his job?", but I couldn't joke about it at the time. Hers is way more upsetting. And she keeps on keeping on.

ThreeSmiles
ThreeSmiles in reply to Hidden

I do remember her! Poor thing 😕

davianne
davianne in reply to ThreeSmiles

Well said Miles. My consultant, the only hepatologist in my NHS Trust, is one of the arrogant ones. He refuses to acknowledge that my constant pain is coming from the capsule around my liver and spleen. He just keeps repeating that it's angina or musculoskeletal, so, not his problem.........and my GP calls this man a "Wizard". Hence, after a year, I still; don't have adequate pain relief😠😠😠

David

Hidden
Hidden in reply to davianne

I'm tempted to ask what you call him David, but I won't! Seriously, why not say that you'd appreciate a referral to someone else, maybe even at a different hospital?

davianne
davianne in reply to Hidden

Hi Fili,

I'v just got an appointment through for a gastroscopy in December, It will be performed by a gastro doc, who has an "interest" in liver disease, so I will ask to speak to her afterwards about my constant capsule pain, because the hep doc says it's not liver related........he could do with a bit of lurking on here........he might learn something!!!!!!! I couldn't repeat what I call him 🤬🤬🤬🤬🤬🤬

David

Hidden
Hidden in reply to davianne

That's why I suggest get another doc: when someone's behaviour makes me swear out loud alone in my house it's time for me to plan a way of not needing to. The offender doesn't hear what I think of them but my head is full of cussing. It harms me further. My dog doesn't like it either.

davianne
davianne in reply to Hidden

Absolutely Fili, but I do cuss quietly...so Teddy doesn't think I'm talking about him😊😊😊

Hidden
Hidden in reply to davianne

When a cuss rises through my boots and up out of my mouth it hits the walls and bounces back. My dog keeps the tail up, looks me in the eye, and seems to say "Really. Why?" It's a fair question... :-)

ThreeSmiles
ThreeSmiles in reply to davianne

So David, maybe you should take others’ advice too and go to PALS to see if you can see a different hepatologist? I presume your Trust has more than one?

Sorry to hear that about your pain. 😕

Miles 🇧🇧

davianne
davianne in reply to ThreeSmiles

Alas no, Miles, he is the only one😢😢😢, but they've got about 6 gastro's. One of them is doing my gastroscopy in December, and she has an interest in liver disease, so I'll try and talk to her about liver friendly pain relief that actually works. Failing that, I will try to get a referral to one at King's College Hospital.

Many thanks for your concern,

David

ThreeSmiles
ThreeSmiles in reply to davianne

Sounds a good plan of action given the circumstances- One Hepatologist- that’s a real shame even our local Hospital has about 5. Mind you our city population is about 280,000...

Hope you get an anwer!

davianne
davianne in reply to ThreeSmiles

Thanks Miles 👍👍👍

Hidden
Hidden in reply to ThreeSmiles

Soak city?

ThreeSmiles
ThreeSmiles in reply to Hidden

Now you have lost me! 🙂

Hidden
Hidden in reply to ThreeSmiles

Slightly unkind of me to associate having 5 Heps with city's drink culture. Soak, Dipso

person who has a compulsion to drink alcohol; a dipsomaniac.

ThreeSmiles
ThreeSmiles in reply to Hidden

Yes - but it is a big place - “ours” 😑

I love this man 😘😘!

Hiya Phyllis,

I really appreciate you taking the time to post this! And to make the effort to learn how. l don't know how to upload pictures, it happened once, but l have forgotten now. If I don't practice new skills regularly, l don't retain the info.

The teacher makes all the difference. 😀Hats off to our wonderful friend Miles, who l am almost positive, is blushing furiously. That's cool, modesty is under-rated. Too many blowhards tooting their own horns!

This was a great article, l needed to read it. l have been seeing my gp about a year, she is just starting to get my sense of humor, and I am getting better at gauging when she is stressed and wants me to run down the list as fast as possible lol. She is a new doctor, very sharp, l am lucky.

Yoiks Boot, embarrassing me at 0400 in the morning- I don’t know 😳. But thank you nevertheless 🤗

Now make sure you go to sleep soon! But I suppose given that it’s only 10 or 11 there not quite yet? ! I can’t keep track!

Pilo

Hidden
Hidden in reply to Bootandall

Thank you for your reply Bootandall - I'm with you on difficulties of retaining new learning. Liver disease lessens my motivation and memory but both get sharper for what I strongly want to do! Maybe you'd upload a picture with Miles' tutorial just to show yourself that you can. You are so good at expressing yourself clearly you may like to add instructions for doing it so everyone can do it.

I read the letter as a help to find my way through doctors' appointments when I could no longer avoid seeing them but couldn't continue to suffer the nuisance of not being heard. I'm pleased it helped you. It goes on being work but that's life? :-)

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