Recent In-Patient Experience

[Lupiknits]

Where do I start? Rheumatology referred me for a colonoscopy, but wanted me to stay the day before and after rather than making it a day case. On the one hand, that turned out to be a good idea, but on the other hand, the care was dreadful.

The prep had arrived in the post, but without instructions on making it up or information on the low residue diet to follow in the days before. I googled the low residue diet myself. Telephone advice at pre assessment was to hand over the prep on arrival in the ward. The procedure was to be at 1pm the next day. As the evening turned in to night I enquired about the prep, which I hadn’t been given. Much panic from staff but I reassured them the procedure was not first thing in the morning.

I started the prep late and experienced the results during the night. It was hard to keep up water intake. My usual low BP dropped to dangerous levels so I was put on a drip. At 7am I started the second stage of the prep, and water was taken away, in spite of the seven hours to go until the procedure (usually it’s no fluids four hours before). I was extremely dehydrated and the drip kept buzzing to alert something was wrong, much to my annoyance and the disturbance of other patients. Nurses came along to say “That needs fixing “ but none of them actually did anything. I suspect I may not have got the benefit of IV fluids. BP remained extremely low.

While having the procedure they noticed I was tachycardic and were somewhat concerned, but decided to continue. After I had several ECGs to check if my heart was in trouble. Fortunately not.

On return to the ward I begged for water. It was 9 hrs since I had any. A very kind patient did the best she could with a plastic cupful until somebody actually gave me a jug full. I was also very hungry: by that time I had had no food for 30 hrs and am underweight so I don’t have many stores to go on. Apparently nothing was available. The same kind patient went and bought me a bar of chocolate. When the next meal arrived there was nothing for me because orders are made the day before. I finally got some toast and marmalade. My BP remained very low through the night. The IV continued to go off to alert there was a problem without anything done.

Next morning I scrounged a pot of instant porridge. At lunch they had three chicken nuggets with two slices of bread available. Kind patient demanded we both have some of the hidden biscuits on the tea trolley. Needless to say I was desperate to be discharged and it wasn’t for the large cannula I would have packed and snuck off. I made gentle enquiries about discharge but was treated with unnecessary rudeness. You’d think with bed shortages and in a surgical ward, they would have been keener to release me.

Each change of nursing staff treated the usual routine in a different way: sometimes I was just asked if I had taken the meds I brought in and sometimes they insisted on giving me their own. On the last day I was given an anticoagulant injection and told I would continue them at home because I had had surgery. No sign of embarrassment when I pointed out I hadn’t had surgery.

Really grim all round. It was as well I was an inpatient given my reactions to dehydration but it was unnecessarily traumatic . I was asked to rate my experience and state the reasons for my rating. I took great satisfaction in writing a full and frank reply.

Edited to add that I returned home on Friday and feel very tired. I also feel desiccated!

[OldTed60]

Hell’s bells how awful for you that sounds. My own experience of bowel surgery for stoma last year were terrible too and other stays in different small hospital years ago were diabolical and traumatising so I understand how you must feel. However at least nearly all of the (student) nurses were lovely with me. The worst aspects were the filthy toilets - only 3 cubicles for a large colorectal ward - and the dreadful call bell noise which was loud as a fire alarm so we had no sleep. The best part was being on an open ward so those of us who could looked out for each other and the rest.

Re food: I don’t eat hospital food - just bring my own food in a picnic box according to my very specific dietary requirements. I was lucky that my husband was able to make my banana smoothies and I nibbled rice cakes and baked crisps in between. I took in a suitcase full of them plus my Ensure.

Every hospital stay had taught me that a) I’m less safe staying in hospital than home and b) the neighbourhood can be really exhausting and distressing unless we have a room to ourselves - which can be a mixed blessing too. When I had portacth sepsis in 2023 I was in a room next to a very noisy male prisoner with severe hiccups! The noise of his wakes from sedated sleep with handcuffs bashing on wall and very loud swearing were terrifying until explained to me. Each morning a relief prison officer would come into my little room mistaking is for his so I’d wake to loud male voice saying “oh I’m sorry madam - wrong room!”’

Like you say our repeat prescription meds are always removed and locked away - no automomy - so we have to wait until a dr has okay’d them all from our notes even with a list on a repeats script and endless clinical letters I missed 3 days of Levothyroxine and 5 days of Losartan due to and having critically low Bp when I came out of theatre last summer. But it bounced back up within a few hours of oxygen and then went soaring up with the ongoing pain of a catheter. No one trained me to change my stoma bags and no specialist nurses came to arrange how I’d get more supplies. I discharged myself as soon as I could and then stoma leaked badly in the car on way home due to bag not being adequately attached. Some patients they kept hold of while waiting for their medications from the hospital pharmacy, others like me they booted out without proper discharge sheet or checking everything through. But at least most of the staff were kind enough. Yours sounded truly awful and beyond the rest that’s the worst of all and inexcusable too. Hope the results come soon or okay if you’ve had them? I have a flexible sigmoidoy tomorrow with my colorectal surgeon so fingers crossed it goes smoothly. At least no need for prep apart from an enema up the way and a glicerine suppository into my stoma. Should be a bit unconfortable but not bad enough to require sedation at least xx

[Lupiknits in reply to OldTed60]

Thank you! I think I’ve been spoiled by my monthly Iloprosts: everything clean, lovely attentive staff, no biscuit hiding!

I expected my meds to be taken off me, so just took 2days’ worth. In the event, I was left with them, except for the one occasion they were dispensed. I have to say that the other patients were helped and guided in how to look after their drains etc on discharge. I expect I was an anomaly for them. One nurse at night was very sweet though: she tip toed around, woke us up gently, and very quietly hummed as she did the obs. It was such a soothing experience.

As to the scope, I was on my side directly facing the screen where I had a close up view of the technicolour journey around my colon. They took a lot of biopsies (I had agreed to an extra one of each for the research into scleroderma and the GI tract), together with screenshots. There was some inflammation so I’ll have to see if that’s microscopic colitis which can happen in scleroderma.

I think the whole hospital experience is hard at the best of times. In my case, I’m used to being fairly autonomous so having every encounter left in the hands of others who don’t seem to care very much is disturbing.

[OldTed60 in reply to Lupiknits]

Well your reply took me on a brief but interesting scroll through all the relatively benign forms of colitis - as opposed to Crohn’s or UC. Easy to say “benign” in an academic paper but if we suffer this on top of existing systemic autoimmune disease it feels far from benign of course. You are so fortunate at least to be in hospital where they know and are researching scleroderma. My lot are all entirely clueless. If I have microscopic or collagenous colitis then I won’t get it diagnosed tomorrow with just a flexi sigmoidoscoy because it would be in my small bowel. I have had diarrhoea now for months and very fed up with sometimes emptying my bags hourly including through the night. The main search for my surgeon tomorrow will be to exclude cancer because of the fairly small bleeds - much more likely due to trauma related we agreed.

But along with Microscopic, Collagenous , Lymphocytic colitis -the one my colorectal nurse suspects is Diversion Colitis. The main way to get rid of this would be stoma reversal - which we’ve already ruled out. The most extreme way of stopping it is proctectomy/ “Barbie butt” which my surgeon said a flat no to when I asked her in December. However I really don’t think I can live with this disgusting and painful outcome of my loop colostomy so I’m minded to persevere. I see an upper GI surgeon in May and am still waiting to learn whether my rheumatologist has been successful in her attempt to get funding for me to see Dr Murray at Royal Free. She seemed confident when we spoke in February but I have a bad feeling that, given the dire straits the NHS and my uni hospital are in now and fact I’m already under gastro here - I can see me being her first patient to get refused an out of Scotland referral. Hope I’m just being doom and gloom but my dodgy gut can occasionally be right! X

[Lupiknits in reply to OldTed60]

I do hope you get things sorted. Yes, I am fortunate that Rheumatology coordinates my treatment across specialties and I can bypass the usual silos different departments work in.

My next investigation will be an endoscopy, which I’m really keen on. Swallowing has become difficult, to the extent that Mycophenolate in particular is hard to get down. It seems that it’s hard to get food down too, followed by reflux, then it hangs around in my stomach for ages. After that, everything comes out the other end violently.

Rituximab didn’t do the job, so they are weighing up whether it’s scleroderma or dermatomyositis to be addressed next.

[OldTed60 in reply to Lupiknits]

Ugh sounds like Gastroparesis to me - plus SIBO with the diarrhoea. And yes there’s a really good scleroderma GI YouTube presentation on SRUK saying only rheumatic condition immunesuppression helps for GI is Myositis. Oddly my swallowing and gastroparesis symptoms have really improved recently post Rituximab. But then I’m not sure if this is due to the biologic or due to stoma helping my upper motility, given I only had the op oa few months prior to first Rituximab with a horrible GI variant of Covid in August. I do think it’s very complicated. Maybe you need to get tested for GI Dysmotility ie gastric emptying study and rapid colon transit rather than relying too much on scopes? But I’m sure your rheumatologist will suggest this is nothing obvious shows xx

[Lupiknits]

I agree it’s likely to be gasroparesis . I take Rifaximin for 7 days each month for SIBO.

The swallowing is something that has been developing over a few months. If you’ve ever been violently sick you may have experienced the point at which it comes down your nose. When I try to swallow larger meds they can’t get further than the back of my tongue or throat which leads to my concern that they might go up my nose. It’s only happened a couple of times so far but makes me nervous.

GI mobility will be tested under the aegis of the research centre.

Thinking back on last week, I spent Monday having Iloprost then Wednesday Thursday and Friday as an in patient. Maybe it was just too much in one week.

[StriatedCaracara]

Does the CQC handle compliants?

I once gave feedback to PALS, that PALS forwarded to Compliants.

The Compliants process was then just as shambolic as the care I was feeding back on.

Letter from the 'deputy chief hospital nurse' - just going of at a tangent and reframing to suit. The concern then being automatically closed so I could not interact further.

They only seem to be concerned about tick boxes, profits to outsourced companies, and not our care. I had a bad reaction to Gadolinium used an MRI scan - outsourced to a Community Diagnostic Centre.

Please look after yourself. You have both the physical and also mental trauma to recover from. Thanks so much for sharing your experience here too.

I am turning down invitations for investigations more as I have no confidence in standards.

[Lupiknits in reply to StriatedCaracara]

Thank you. In my experience, and that of others, PALS is there to make patients think they have any power. They may be well meaning, but are toothless.

My experience, bad though it was, doesn’t merit more than a detailed feedback. I have noticed that such feedbacks can get through: it at least allowed me to vent. To be fair, the three other patients on my little ward seemed to get better care.

Thank you too for mentioning the need to recover from physical and mental trauma . That’s exactly what I need to focus on x

[Buttsy]

Morning Lupiknits,

So sorry to hear of your, bad experience in hospital. I hope you rest and recover from your ordeal this week.

Unfortunately I don’t think your experience is unusual, I was in hospital just for the day last November for a full hysterectomy. A few good nurses but on the whole , I felt I was treated quite poorly and I had trouble after surgery and no post op as standard, said unnecessary even though I was bleeding beyond the expected time scale. My GP had to ring up department and send me as an emergency as no one was listening to me. Then they had to sort it out.

I had been through PALs prior to this and while they liased with the department they didnt really actively , get complaints sorted, they just reported back to me and relayed the departments response.

I too had a distressing experience with all the issue and unacceptable care.

Take care and look after yourself.

[Lupiknits in reply to Buttsy]

Oh dear, another unfortunate case. That must have been extremely unpleasant. Yes, PALS really don’t do much x

[Clangerscat]

Hi Lupiknits, sounds awful! Hospitals are just so noisy now, so many machines that all have their own beeps, and staff always seem so rushed I wonder if they have time to care anymore. I hope you rest and recover now you are home and that you have a positive outcome from your results. Take care of yourself.

[Lupiknits in reply to Clangerscat]

Thank you! Yes, hospitals are not a place to rest. I have no idea what the nurses were doing. They didn’t give the impression of being busy. I’d prefer to think that they were, rather than imagining they had their feet up eating the hidden biscuits. As you can tell, I now have biscuit related trauma 😂x

[Lorfal]

Hiya, regarding your swallowing difficulties with large tablets please have a word with GP/pharmacist. I was constantly choking on a very large magnesium tablet and they managed to find a chewable version for me to take which has worked well and with my non absorption problii feel it is probably better all round as well , take care

[Lupiknits in reply to Lorfal]

Thank you! I’ll make enquiries

[angelahook]

Sorry to hear of this ordeal you were put through. Unfortunately you hear only too often of the same kind of experiences. I hope you are well and nothing sinister was found. Good luck for the future and happy biscuit munching

[Lupiknits in reply to angelahook]

Thank you. I’m awaiting the official results in the hope that there’s some kind of treatment to help.

The funny thing is I’m no great biscuit eater but was hungry. Kind lady and I were in agreement agreed about the biscuit injustice! X