Sarcoidosis - not enough care and attention given to sufferers

Hi Cassy so sorry to hear what you are going through.

Albeit not very nice for you but attending A&E will hopefully push things along for you and speed it all up.

From my point of view I can homestly say I have become much better overtime [hope I dont jinx myself now]

I would think this weather is a big factor in your present condition so hopefully thinsg will calm down for you soon.

Chin up.  It is not easy have a baby/toddler at the best of time let alone when you are feeling so poorly.

Aww Cassy, so sorry to hear that you have not been feeling good. My CT showed the granulomas on the lungs as well as swollen lymph nodes but a year and a half later the lung ones are almost away. Still get stabbing pain under my arms , groin and breast but it is not too often. Swallen lymph nodes are usually connected to hormons.. Make sure that you cut out as many foods as you can containing hormons, especially estrogen.  Try to avoid long life and where you can afford buy organic. Unfortunately a lot of meat products also contain hormons (growth hormons injected to animals to make them grow faster ) Anything with east is not good either (bread, beer etc), soy foods too.. Internet has a lot of info, check for balancing and avoiding foods containing high levels of hormones.

I can only imagine how hard it must be with a little one. He is so little that he doesn't understand yet that mummy is not well.. Mine are teenagers and help me when they can but they still like their mummy sometimes doing things for them.. Hope you are feelinhg better very soon and don't worry too much, stress can only make the way you feel worse..

Love, health and well-being to you all

MM

Thanks Linda &MM good to see things can get better. Whenever I look into the condition it does tend to be all doom & gloom so nice to hear this isn't the case all the time.

I will definitely look into the diet MM. I am a vegetarian so that solves the meat issue but will look into the soy products.

Having a quest moment while my little man is having a power nap

... Should really be doin day bit of housework but that's just going to have to wait

C xx

I am about to plunge into housework but it is so hot.

Was at my GP mid morning so the morning came & went!

She was quite pleased with my progress, but we discovered between us that the opthamlist report from April had still not been sent....although I was told verbally at the time it was ok for me to start on Hydr.....mm

She is going to chase it up now...bit worrying.

She also said the reason my ankles get swollen quite often could be to do with my BP tablets and the ones I am on tend to cause ankle swelling.  I have never seen this GP before so I was pleased with the outcome and this endorces the fact that I was saying on here the other day that it can sometimes be a good thing to see a different GP.

That's not good about the report. This GP does sound like she is on the ball with things. 

Can they change your BP meds  or give you something to help with the swelling?

The GP who finally listened to me last year & ordered a Chest X-ray has just left the practice. Such a shame. I was tempted to follow him to his new practice if I was allowed😺. So I'm currently working my way through the GP's at the practice hoping to find one that is able to give methe help & support I need 

Eye report - exactly!

Especially when it was the top GP there that referred me etc so we should get a response now.

She actaully bought up about my eyes etc, ironically since coming back ive had a weird dark kind of splodges and could hardly focus, it seems to be easing off now hence I can see the screen but no doubt it is sensitivty towards that light as this happens.

Shame your GP has changed but at least the ball rolling is all on your records so they should be able to see from that and hopefully you will get the right one in the end.

Hi Linda,

Has your GP not considered a mild diuretic (water tablet) to help ease your swollen ankles or does she think your swollen ankles are not due to a build up of fluid? Swollen ankles are the last thing you need in this heat. Try and elevate them more if you can. Even if you are sitting at a desk you could maybe put a stool under your feet.

I managed to run a hoover round my flat the other day and had to shower and completely change all clothes afterwards. Two minutes after changing I was soaking again so my washing machine has been extra busy!!!!

I can understand why you are worried about your eye report not being sent. It kind of makes having tests a waste of time if the results are never referred to. I also seem to be having more eye floaters at the moment. They seem a bit different to anything I have experienced in the past in that they are like a web instead of individual lines. I always used to think the floaters looked like worms - yuk! but now like I said they are larger like a web or a veil. It's so hard to describe them isn't it?

It's such a shame you haven't been able to try Hydroxychloroquine. I'm sure you would have felt the benefit after a couple of months of taking it. I hope they make a decission soon.

Hugs,

June xxx

Good for you Cassy. I'm a great believer in the saying that the work will still be there when you feel more like doing it. I'm as house proud as the next person but honestly in this weather you can make yourself feel really quite ill and you could end up out of action if you push yourself beyond your present limit. So, down tools and get that all important rest.

Hugs,

une xxx

Hi June,

There has never been any mention of a diuretic with any of them

it seems they all think its part of the condition, but as I say the GP I saw on Friday actually said that my BP tablet can cause ankle swelling.....

I do try to elevate my feet where possible!

Yes the sweats are ten fold these days with the warm weather.

Eye test - unreal, especially given the fact that I went back to my GP and said I was told at the test that it was fine for me to start on Hydroxychloroquine and they took my word for it!

I have been having a few different things going on with my eyes lately and my worms & black spots seem to be dark blue/purple and a lot bigger so that sounds similar, but as I say I put it done to light sensitivity.

I have been on Hydroxychloroquine for 5 months now, maybe I done a typo somewhere in an earlier post.

Glad to hear you more 'chirpier' nowadays. 

Take care  xxx

 

I'm also a vegetarian Cassy so at least we've side stepped the meat filled with steroids. It really worries me what they do to food these days. I was just talking to someone the other day about milk and how long you can keep it for these days. It worries me all this blasting things with gamma radiation to prolong fresh foodstuff's life not to say all the pesticides etc. Even when fruit and veg comes from organically grown crops I often think how they are just as likely to get contaminated from rain water and whatever is being carried in the winds.

The other thing that concerns me is the advertising of vitamins and minerals both of which should not be taken if people eat a balanced diet. I often wish we could ease up on the scare tactics used by these companies. You never hear them saying what can happen if you take too much vitamins. In some cases it can be really dangerous As with many thing, too much of a good thing is just as bad as not enough.

I totally agree with MM you need to be careful not to cut out too much.

hugs,

June xx

I am a bad example I do tend to get through my LIST I punish myself with every day.

But in the heat I know that I have to take it a bit easier and rest legs at periods.   It really tells in the evening when I am feeling tired.

Hi MM,

I'm just catching up on the posts I haven't read and when reading yours I realised that I too have been getting pains in my breasts and they now feel a bit 'lumpy', not abnormal lumps probably just little glands. I was supposed to have a mamogram two years ago (I get them regularly) but because I was feeling so unwell they didn't do it and told me to come back when I felt better - recipe for forgetting - which I did. Only recently I noticed that I was getting pains in my breasts and never attributed it to the sarcoidosis. My pain wasn't so much stabbing as throbbing. To be honest I thought I had caused it from not wearing a bra because I'm finding it uncomfortable and can't find a comfortable bra.. I'm not hugely endowed but with the steroids causing a dramatic weight gain obviously the breasts are also bigger. Also water retention doesn't help either.

The pain from swollen lymph nodes is awful so I can imagine how much pain you must be in. You poor thing, it looks like all your lymph were affected. Bad enough under the arms but in the groin too, it must be so difficult to even sit comfortably let alone walk!

I bet this weather is making it terrible for you too. Anyway I just wanted to say thank you for sharing re the breast pain because I wouldn't have given it another thought and although it is just as likely that my breast pain is due to not wearing a bra I will get myself checked to be certain.

Hugs,

June xx

Oh that doesn't sound good Linda. I'm shocked that given your past history of eye problems they are so slap-dash about the report etc. No Linda it's not you doing a typo it's me not reading the posts properly. I'm dyslexic and I miss stuff and add stuff all the time. I'm really sorry. I'm supposed to take my time when reading but I don't enjoy reading because it is hard work sometimes - more so when I'm not feeling well. It's no excuse though if I'm posting replies I should be paying attention too.

Have you noticed any difference with being on the hydroxychloroquine? I found it helped the carpal tunnel in both hands and wrists a lot. If I remember rightly you also suffered greatly from carpal tunnel syndrome. I hope you are getting some benefit. On the plus side I looked to see what recent studies said about eye damage when using hydroxychloroquine.

The royal college of opthalmologists say this about hydroxychloroquine and eye damage;

Ocular side effects include retinal toxicity (which can lead to

permanent visual impairment) and deposition of the drug in the cornea. The mechanism of retinal toxicity is not well understood, though it appears that the earliest changes occur in the cytoplasm of ganglion cells and photoreceptors with later involvement of the retinal pigment epithelium, where it binds to melanin.

Hydroxychloroquine has been used since the 1960s, and although it appears to be considerably less toxic to the retina than chloroquine, possibly because chloroquine crosses the blood-retinal barrier more easily, a similar pattern of retinopathy has been observed with both drugs.

The incidence of clinically significant hydroxychloroquine retinopathy appears to be very low with only 50 cases identified in a literature review to May 2005 and it has been estimated that at least one million patients have been treated with quinolones during the same time period. In the largest single series, one patient out of 1207 developed retinopathy after 7 years. In a prospective study of patients taking within the maximum

recommended dose of 6.5mg per kg of lean body weight, the incidence of irreversible hydroxychloroquine retinopathy was 2 cases in 400 patients, both of whom received treatment for over 6 years. Maximum daily dosage and duration of treatment appear to be more important determinants of the risk of toxicity than cumulative dosage.

Hope this helps and maybe takes some of the worry out of it but obviously you need to get the okay from your own consultants.

Hugs,

June xxx

Yes June the eyes seem to of taken a back seat now.

They seemed to of been a priorty when I was under the TB clinic, also the rheumatolgist was the one who intially referred me to the eye hospital.

Then of course my sarcoid consultant mentioned it to be able to start me on the Hydro.

But as the eye hospital had discharged me we got no response at all from them despite making several phone calls myself aqnd my consultants secretary speaking to them, I think they just thought she is discharged and didnt really take on the board that we were just asking for one answer as to whether it was safe to start the hydro.

Hence when I saw my GP he then iniated a referral to an opthamoligist...who had not sent a report, so heres hoping I am on the right medication!!!

It is hard to say whether the Hydro has made a difference as I wasnt feeling too bad when I started them but I am sure it is helping in some way, before the hot weather I didnt have ankle swelling once I commenced them.

I didnt actually have Carpal tunnel it was tingling in my wrists that sometimes went up my arm, but that seems to of stopped now, although I have had it very slighty spasmodically.

Thanks for that extract - very helpful as always.

xxx

It could have been the start of carpal tunnel which can also appear in sarcoidosis sufferers. Hopefully the meds have kept it at bay. My carpal tunnel apart from being terribly painful also causes tingling and pins and needles in hands, wrists and arms. I tried coming off the hydroxychloroquine and my God did the effects come back with avengance. Won't be doing that again any time soon!

I hope you get your answers soon regarding your eyes. I remember how bad they were when we first started posting here.

Hugs,

June xxx

Oh right, well thats interesting to know, I will make sure I mention it at my clinics.

Eyes - thankfully they dont seem any worse. So fingers crossed. x

Do either of you ladies  suffer with tiny ulcer like sties on your eyelids? I keep getting them some on the surface others under the eyelid. It's been bugging me for ages and wonder if it's sarcoid related

Hi.  No I haven't had anything like that with my eyes

I do get a lot if mouth ulcers though

I think mouth ulcers, eye styes and other things like that are to do with having 'a compromised immune system', or are side effects of the various drugs we take. Part of the general joy that is both having Sarcoidosis and being treated - the word haphazardly comes to mind - for it 

Thank you for that

Thank you too! Wish the pros would listen to us. I at long last got my paperwork for ENT  but by the timeI get there this latest bout will be past it's worse and I'm sure they will think I'm being a drama queen. I certainly don't want more drugs just confirmation that I am not loosing my marbles!

A stye is a small abcess filled with pus which is usually caused by the Straph bacteria so if I were you Rachael I would get a prescription from your GP to clear it up and then have a check up with an opthalmologist to see what is causing the repeated stye episodes.

Sore eyes and mouths are often due to the fact that the mucous lining of eyes, mouth etc is going from over production of mucous to under production of mucous. E.G. if you feel your eyes are itchy and sore then obviously not enough mucous being secreted. This in turn can lead to other problems such as ulceration because the scratches allow bacteria to enter. With the mouth you have a similar situation and bearing in mind it is the dirtiest place in the body, it's not surprising we are getting sores. Di is absolutely right when she says it's the medication as well as the illness. You just need to look at the side effects list to see problems such as 'dry mouth'. Many medications can even change the flora of the mouth (that is the normal inhabitants of the mouth such as the good bacteria and microbes that are supposed to be there) If even one of this vast community is knocked out then there is an imbalance and it shows up as ulcers and blisters or thrush. The first thing you know is you mouth has become a battle ground and it becomes all inflammed and sore. Even using too strong a mouth wash or toothpaste can cause big problems because the strong ingredients literally kills the good bacteria as well as the bad because of course it can't distinguish one from the other. It's the same thing for the eyes. Every time you blink the natural secretions get washed over the eye by the eye lid to keep it moist but what happens when there is little secretions to keep the eye moist? It's like driving with the car windscreen wipers on when there is no rain. Every turn of the wipers puts another scratch on your windscreen, every blink of your eye lid scratches the delecate cornea.

Also don't forget the sinuses and nasal cavity. We all forget that it also needs to be in good working order not only to maintain its own objectives but also to aid the mucous membranes of the mouth and eye. Think how you feel when you have a bad cold. The membranes are all swollen and the mucous is too thick so everything back tracks like a choked drain. Eyes are either streeming or dry, red and sore. The mouth is full of bugs because you are having to breath through your mouth rather than your nose so the filtration system that would normally sift out some of the things we don't want to inhale isn't working and bugs attack your throat.

It's an amazing thing, the body, when it's working to full potential but it just needs one small thing to alter it slightly and everything ese starts to break down - the knock on effect!

Thus endeth the lesson

June xxx

  

Hi June,

thank you you for the expert information. I also have dry itchy ears to which I have to apply Vaseline every day, and I use eye drops as my eyes get sore and my skin is like paper. And I won't mention the other area that gets dry… I blame long term steroid use.

Oh damn, yes ears very important too! Trust me to forget my ears ha ha!

The awful steroids really wreak havoc don't they? I totally agree with you re long term steroids 

Ear canals that are dry cause awful ear ache too but as you say the skin  that forms the ears suffers terribly.

Our sensitive areas too and with the added problem of recurring thrush because the flora in that certain area is also altered.

I think we all end up not realising how many areas are affected due to medication as we are so busy trying to get answers about the disease.

I worry how many things might not resolve if and when we get off steroids. I found I accepted the fact I would be on steroids for the rest of my life just a bit too easily. Maybe I've become too complacent and just think it's easier to roll over and let it happen. Not really like me at all but I guess we all feel like throwing in the towel sometimes.

I've also been told I will never get off steroids, but never say never! I did try a few years ago when, as now, I felt really quite well. Unfortunately after a year or so the symptoms all returned and I was told by a consultant that if I didn't go back on steroids he 'wouldn't be responsible for the outcome'. I was feeling Ill again so I agreed. But while I was off the drug my skin, etc did recover.

As I'm fine at the moment, I'm hoping to get the dose reduced when I next attend the Brompton sarcoidosis clinic which will be in September. 

Di

That's exactly what happened to me Di. I was gutted when he told me the sarcoid had become worse again although I kind of knew because my cough was bad and I generally felt unwell. I tried to blame the unwell feeling on steroid withdrawal but no.

Oh well, I'm actually off to get my monthly prescriptions now. Top of the list - you guessed it - prednisolone!

What dose are you on at present? I got down to 5mg but the sarcoid started rearing its ugly head so I'm back on 10mg to reduce to 7.5mg. My consutant says he gets the best results from people kept on a dose of 7.5mg

I'm on 10mg of Prednisolone and 5mg of Methotrexate. Also inhalers, etc. but since I stopped working 4 days a week my health has improved greatly,  if not my wealth! I haven't had a trip to A&E since May 2013, which is good news, so I'm hoping to be told to reduce the steroids to 5mg. I could be it myself, in anticipation, as I have some 1mg so could go to 7 and see how I feel.

Thank you so much for that very informative speech!  These sty things on my eyelids do not have pus in thank goodness but make my eyes feel like I've got conjunctivitis. They don't last long usually 24hours but it's the fact that they keep appearing that makes me think it's sarcoid particularly given the dreadful sinus problems I keep having. The joke is that I can't see ENT until 29th September, what use is that? Heigh ho

Any chance you could get your GP to phone the secretary to bring your appointment forward? I know how annoying it is when you desperately want the consultant to see what you think is sarcoid so he can take biopsies etc and be able to tell you for sure. I have now had several biopsies done on my skin but honestly I feel they are taking biopsies too late. One biopsy did show inflammation but the rash that had been there had gone again so the spot they biopsied was of a heeling lump. Little wonder she then said she hadn't found the sarcoid there. It is so frustrating when you know it looks like sarcoid and behaves like sarcoid but has 'healed' by te time you finally get to see the right consultant.

I actually photographed what I was seeing but my hands shake so I don't get a good photo. I even made the long expensive trip to her clinic in the hope she was there (I was actually attending another clinic in the same hospital that day). Unfortunately she wasn't in that day so I left the photos with a note. Haven't heard a thing and that was the last week in June!

I think in your case it probably is sarcoid given that you have it in your sinus and everything is connected. However for the sake of permanent damage to the eye lids and more importantly your tear ducts I think they should step up your appointment. The only other advice I could offer is to find out which communityhigh street opthalmologist they woud normally send their patients to in order to treat regular eye problems. GPs usually have a list in and around the area they have their practise. Your GP might agree to refer you while you are waiting for the hospital appointment to come around. If not I don't think it would cost very much for a consultation.

Oddly my chest Dr (we don't have a consultant at my hospital)  has never done a biopsy said it would not be helpful? The only biopsy done was by my ENT consultant  who discovered a mass inside my head and removed it during a Fes  operation. She told me that there were granulomas which are classis sarcoid symptoms. So now I don't really know where I stand. Should I have a hissy fit and demand something is done as at this rate there will be nothing to look at!

I'm puzzled as to why a lung biopsy isn't any good. I can only think that she is not seeing anything on your lung CT scans and x-rays! If she is seeing areas in the lungs then it's in her own best interest as well as yours to biopsy the area to confirm sarcoidosis. Maybe she doesn't think people can get more than one disease at a time! I really think you need to ask her to explain her decision not to biopsy. You have every right to request a biopsy and if it were me I certainly would want to exclude the possibility of there being another disease process going on. Maybe not a hissy fit - just a calm request

Sorry I also meant to say that while she is absolutely right that granulomas are classic in sarcoidosis there are different types of granuloma and without a biopsy of them she would not be able to tell if it was a sarcoid granuloma or something else like a TB granuloma. Granulomas can be caused by a foreign substance in the body and the granuloma forms as a result of the bodies healing mechanism or caused by an injury e.g. after an injection is given (perhaps badly) and a lump occurs which is the body's attempted to heal what it thought was a foreign object. (you can get other lumps at injection sites that are not granulomas. I'm just using this as a possible cause). So, no biopsy, no definitive diagnosis!

My consultant lets me adjust my prednisolone which is a good thing because I don't have to suffer until my next appointment if I know the sarcoid is getting out of control. I would definitely have been in dire straits this last time if that had been the case.

Yes Di very wise, you do need to come down slowly. It's not good to drop from 10mg to 5mg incase your body has stopped making its own cortisol and is reliant on the steroids. If you do intend to reduce the dose yourself you could try taking 5mg one day and 10mg every alternate day for 2 - 3 weeks or longer if you've been on 10mg for a long time, then if you are still feeling well and all sites of sarcoid are behaving themselves you can reduce to the 5mg daily. This is what my consultant did with me the first time he was trying to reduce the steroids. I didn't have any nasty side effects that I was aware of it was just unfortunate that the sarcoid had other ideas and going into remission wasn't one of them!

Good luck what ever you decide.

June x

Sorry perhaps I didn't make it clear that the dr I see at chest clinic for sarcoid has seen enlarged glands on the Cxr and has never suggested a biopsy. The ENT consultant knows of my sarcoid and had to do a biopsy of the mass she removed from inside my head to check for anything more sinister. She just said there were granulomas which to her way of thinking were signs of sarcoid. Apologies for any confusion!

Sorry Rachael it's not you it's me. As I said in a previous post I am dyslexic so often don't read the posts properly. Unfortunately there was no such thing as dyslexia when I was young so I've spent years learning my own coping mechanisms which don't always work.

I'm surprised she didn't opt to biopsy the lymph glands especially as they were swollen. I'd be a bit concerned because it sounds like she hasn't done everything to 100% confirm sarcoidosis and I would be happier if it were me to have definitely excluded all other possibilities.

I'm with June on that. Especially as if its lymph nodes in the chest its probably going to be easy enough to get a biopsy. I had it done as a needle biopsy with a wee bit of anaesthetic gel. Took about 10 min, including time to let the gel work and no scarring afterwards

Thank you ladies! I have to say that so far every op I've had at my local hospital has not gone to plan! So I have some trepidation in asking for any procedure to be done but equally I am fed up with being dismissed by the hospital. Think perhaps I need to make a stand and fight from my corner!

Totally understand Rachael. I am now hospital phobic since having so many things go wrong. I don't even have faith in the ambulance service following shocking treatment from them. I honestly thought it was me and not them until a few people I've recently met told me about terrible things that had happened tothem and their friends.

The thing that shocks me is that they are getting away with poor treatment.

I sent a letter of complaint to the ambulance service 2 years ago following the shocking treatment I received after taking ill and falling out of my wheelchair. It took 2 poilcemen to break down the door but when called upon to say how shocking the paramedics had treated me they said the paramedics had not behaved inappropriately. The list of hospital catastrophies including the one that left me in a wheelchair are too many and too lengthy to post. Suffice is to say I have noted on my files that I do not wish to be taken to hospital under any circumstance although in fairness to my family I have left the final decision with my daughter if I am unable to make my own decision.

I'm at a loss as to what has happened to some of the hospitals and their staff. Even when I left nursing at the time I felt disgusted with the way some of the staff conducted themselves. In my last ward there was a young staff nurse who was getting married and she spent most of her working hours on the phone to her fiance! Not only was this bad behaviour but it was using precious NHS money for the phone bill. The shocking thing was that because I was new to that ward I was considered a grade below her so I couldn't tell her off. I constantly worried about what would happen if there was a sudden emergency and how could she watch what was going on in the ward while she was on the phone anywayAll the other staff said there was nothing wrong in what she did so I could do nothing. If I had taken it higher I would have never worked in the hospital again. Like any service job, people can make your life hell until you are forced to leave. I think some of them go a bit crazy with power. In the end I resigned and everyone said it was for the best as it was obvious the death of my husband had caused me to be unable to do my job. Perhaps partially true but at least I still have my registration number which they won't have if anything bad happens due to their attitude.

 Isn't it terrible how submissive we feel in the company of doctors and dentists. Actually in the company of anyone with a position. Going to a parents night at a school has us saying "Yes sir, no sir". I don't think it's even anything to do with respect for their position.

Perhaps you could ask to be referred to another hospital, Rachael although maybe standing and fighting from your corner would make them sit up and take notice. I've always been surprised how atitudes change when you came back at them.

Hope you manage to sort things out.

Hugs,

June x

 

Hi June,

The quality of care in both NHS and private does seem to be inconsistent. I had a generally positive experience of one local hospital which has a dreadful reputation, as the treatment I received and the people I encountered (bar one unpleasant nurse) were fine. And when I have called an ambulance both the first responder and the crew have been great. In fact, I was never so glad to see anyone as I was the push bike medic when I had an episode of serious haemoptysis whilst driving through Central London. I thought I was going to die as I was coughing so much blood I couldn't breathe, and was totally terrified. Both he and the ambulance crew were calm and efficient, which calmed me down.

However, I consequently had an extended stay in hospital waiting to have an embolisation and I did observe quite a lot of problems, especially concerning an elderly and semi senile woman in the same ward. I ended up trying to talk to one of the doctors because they were just leaving her meals beside her and she wasn't eating, but no one helped her and the catering staff would just clear the left food away. The doctor asked if I was a relative, to which I replied, no just another patient... I also spoke to the nurses, but was told they weren't allowed to make her eat! Di 

Oh my God! How terrible for you. I am so glad you got the help you needed straight away.

It is unforgivable regarding the elderly patient, not to say it is incorrect what they said. Yes it is classed as assault to force feed anyone but they were not even trying to help her. The fact that she had senile dementia even in the early stages means that they should have stayed on hand throughout the meal time to help her because two minutes after telling her that her meal was there she could very easily have forgotten so repetative action is needed. I am horrified with the way they treat elderly patients. Caring for the elderly was my favourite part of nursing and I went on to run a nursing home. I'm shocked at how quickly a doctor will prescribe strong medications that leave the elderly practically unconscious. I remember going to the nursing home as an agency nurse and being shocked to find all the residents practically comatosed. Luckily the old matron was sick. I know it is terribly to wish ill on someone but because of her ill health she had to retire which meant these poor people could be treated properly. The first thing I did was to contact every GP who had a patient at the home, and tell them I was taking them off Merilil and the like.

It was astounding to watch each day as the residents slowly came round. I discovered that not one of them was violent or difficult to handle so I am at a loss as to why they would ever have been drugged like this. It must have been done purely to save the staff having to do much. Certainly the smell of urine hit you whenever you entered the home. Next step was to improve continence by toileting on a regular basis. Then I taught the staff why we were doing things and told them I never wanted to see them do anything to a patient if they didn't understand why they were doing it. I had the cook change the meals too because they were being given the same thig day after day. As the residents 'woke up' we started to play games in the afternoon and we were even able to get some entertainment in now and again.

It breaks my heart to think how many years these poor people had to endure such treatment and I wish the rules were stricter in policing these homes.

On behalf of that lady in the hospital I would like to say a huge thank you, Di. I know you weren't able to change her treatment but at least you tried. We are in 2014 and still we can't seem to treat people with respect and care when they need it. The maddening thing is that students are taught how to nurse people who can't express their needs themselves and it is just a cop out to use the rule of not forcing people to eat. The poor thing must have been starving.

I can remember a consultant screaming at me that he was going to "ram a naso gastric tube up my nose and into my stomach if you don't start eating". I'd had surgery to remove about 15 inches of bowel and had to endure 5 re-admissions to hospital because of complications. The reason I couldn't eat was because I was still vomiting and also because the staff wouldn't even try me on food because of this! The nurse standing next to him didn't even tell him this. I signed myself out of the hospital. Another ocassion a consultant said he knew what was wrong with me, he said "You need a good kick up the backside". That time I had a bowel obstruction due to a large abcess in the original wound. Again I signed myself out. The sister tried to get me to stay saying that the doctor hadn't known about my history re 5 admissions. As though that gave him the right to speak to me that way.

The awful thing is that there is no one to complain to. Well there is but you can find that the very doctor you are complaining about actually sits on the hospital board so how can he police himself?

I have also had stupid and uncaring things said to me over the years. And the not reading your notes thing is endemic. I know the doctors are under a lot of time pressure but surely they could at least skim through so they have a bit of a clue who and what they are dealing with? It's just so unprofessional, not to mention potentially dangerous.

Absolutely Di. I think they would be under less time pressure if they got the treatment right the first time and they can only do that by reading notes. It's upsetting for patients too when the doctor isn't clued up and asks a question like, "are you pregnant?" If the patient has had a hysterectomy at a young or youngish age and has maybe been depressed because she wasn't able to have children, the last thing she needs is for a doctor to ask this or test her without telling her that was what he was testing for!

In this day and age doctors have no excuse about not having your notes because they are available on-line as well as in paper form but how many times I have been told "I'm sorry I don't have your notes" so I've had to give them a complete history. It's ridiculous!

Dangerous? Very much so. If the patient is unconscious and they administer a drug that the patient is allergic to. The list would be endless of possible disaster that could occur.