I stood up for myself-amazing

[Nonameme]

I am not really sure where I should put this as all my ailments seem to roll into one.

Anyway I have been feeling unwell and extremely fatigued for well over a year and as many on here just trying to get help from the wonderful people who write with compassion on these threads. I can say in all truth this community have saved my life.

Back to present, I guess my main problem running through everything is fatigue, it is soul destroying and if you do get to see anyone their replies are frankly insulting.

Over the last week I have noticed the start of what I now know is an abscess at the top of my leg-lesson one be correct with your description I was given a sharp rebuke by a receptionist that Groin is not top of leg! Getting ahead of myself. Decided I would have to start the journey of trying to see a doctor on Friday before August Bank holiday so kept some notes as it was becoming quite large painful and uncomfortable. Tuesday morning submitted econsult. Quick response make appointment for next day.

Confirmed abcess ‘not-ready ’ start penicillin and call if gets worse-it did overnight so called told 111 and told Urgent Care one hour- was already on way so arrived on time. Rebuke by receptionist not leg- groin.

Did not look too busy but only hard plastic chairs so stood.

Nurse did vitals in small side room all conversation could be heard in waiting room which is also for A & E. Asked to see abscess I was standing so dropped pants and she couldn’t see so said to lay on uncovered couch and I pulled my stomach aside and she gasped and said that is not in your groin it’s your Vulva! and it’s huge why have you waited so long?

Wait outside a nurse will take bloods. After a few minutes this was accomplished.

Then an hours wait to see dr. Who was obviously unsure what to do. after discussions with nurse ignoring me a decision was made I would receive painkillers and antibiotics and would need to return. Wait outside.

About half an hour later bloods were taken whilst sitting in waiting room then another hour into room for canula as all drugs were to be intravenous.

Back outside and drugs finally arrive but there are 3 to be given one at a time.

Still sitting in hard plastic chair in crowded waiting room

I am type 2 diabetic but had not had a finger prick or been offered food or drink.

drips finally finish and by now I have been sat in hard plastic seat for five hours so thought discharge soon so back home on settee with a cuppa.

Silly me 6-7 hours and abscess is starting to leak and I do not have a change of clothes. 8pm Urgent Care closes for the day. No food or drink and still in plastic chair and in tears.

9pm and I ask a nurse to remove cannula as I am going home as I need food. Another nurse is called.still in Waiting Rooms, by now full of A&E patients.

She tells me no you can’t have that removed you are staying in! We are waiting for the surgeons to come and see you.

I was stunned and I do not know how but I found my inner strong person and said well why did nobody think to to keep me informed I have not even been treated as a Patient but more like a minor bug to be tolerated. Diabetic no tests food or drink for 8 hours despite them knowing how uncomfortable I must be no attempt to attend to my comfort, no privacy during treatment despite them knowing I was now an in patient-when did you the staff know this information - well since we got the results of your blood tests -many hours previously!

I just exploded-politely and said well I am discharging myself -taken into room by night doctor and day doctor appears and they start an exchange of are you asking me or telling me etc discussion. Nurse appears to remove canula , night dr receives phone call surgeon coming.

I was told no beds waiting for discharges now 10 hours in department and agreed I would be expected to sleep in plastic chair-ask if you want a drink

He arrives and waiting room is tuned in to see what happens next. I am taken into another more private side room and he wants story so I filled him in

Asks me to get on couch and he says it ‘ready’ after he examines and touches with a remark why are you not in a gown- too late now!

He then says he has never seen so much pu** pulls two paper hand towels and says hope your good with pain and sets about cleaning it out there and then!

Will spare you the details suffice to say 20minutes later wound declared empty operation over and no sedation used. Nurse sent in to take a swab and clean it and me up as best she could. She was one of the nurses I had argued with so she did the swab but just gave me a pad removed canula and I was free to go! Dressed as best I could and walked back into waiting room - everyone had drinks and some sandwiches round of applause best wishes and I left 11 hours after arriving.

Now 24 hours on I cannot believe how much better I already feel I have not stopped gardening even though I am sore and bruised the energy I have is amazing-who knows how much longer I would have had to endure that truly inhumane treatment had I not found my inner strength.

I am now trying to calculate how long I must have been incubating this it explains a lot- long may it continue.

[Nackapan]

Sounds horrendous. Thank goodness you spoke up.

I hax abcesses I now know were one of the earlier signs of b12 deficiency as was vigD deficiency.

Hope you are getting enough B12 .

[Nonameme in reply to Nackapan]

Thank you, already this has got my mind racing with so many signs and symptoms falling into place now. Just one I was very upset a couple of weeks ago when a physio discharged me as unprepared to help myself because I said the pain around the top of my leg and right hips was too painful to force movement beyond pain level and that is the same region. Also I had urinary problems discharged again, and gynaecologist could find no reason for pessary discomfort told me it was the bladder that was prolapsing most of all so contacted Urologists secretary day after discharge letter sorry you are discharged go back to GP. And just now read my Discharge letter which states that I had been admitted to Emergency department and was on Emer wars from where I was discharged. So now sitting in a plastic chair for ver 10 hours with no food or suitable clothing let alone a bed is classed as being an in patient! Unbelievable I knew it was bad but this is just pure lies.

[Marlboro123 in reply to Nonameme]

I feel the pain! In May of this year I thought I had a spot in the groin area within 24 hours I was in agony it was a huge lump under the surface, rang the g.p surgery and appointment that day. G.p took one look and said surgery required in hospital, he rang it through so they were expecting me. Sat in chair 7 hours before being told no theatre slot and no bed available so they gave me antibiotics and told me to come back in 2 days. Well when I went back it was worse and had to wait another 6 hours in a chair to finally have doctor examine me and say they believe I now had possible MRSA as it had got worse with antibiotics, then it just got better as they told me there was no chance of a theatre slot but they needed to operate straight away, so in a side room they got there equipment and gave me numerous local anaesthetic and said this was going to be painful. Boy oh boy was it bad and it induced all my neurological tremors in my arms, hands and legs, I almost fainted when I did get up, they also discussed that it was not the groin area but top of thigh which they said would be under orthopaedics and not general surgery, to me it didn't matter as I just wanted to lay down without pain. Reading your post brings the memories all back.

[Nackapan in reply to Marlboro123]

Sounds awful.What was it ?

Was that linked to b12 deficiency?

[Marlboro123 in reply to Nackapan]

I don't know if the abscess is b12 related but the neurological response I had to the pain of the surgery must be, the tremors I had were all exaggerated versions of every tremor that I have had since becoming b12 deficient, I felt my nervous responses heightened to a level I have not experienced all at the same time.

[lb9999 in reply to Marlboro123]

I am so sorry you are dealing with this. I can relate.

I recently had surgery and think I have experienced a crash. Do you feel your surgery set you back? I’m almost two years into SI and have been doing 2x a day for a few months. I’m currently on 5,000mcg day (split up). Had surgery 2 weeks ago and feel like I did when I was diagnosed; twitching muscles all over, burning, numbness, heart palpitations, lightheadness, brain fog, weakness in left leg and arm, anxiety, cannot sleep. Had MRI done two years ago and was clear. Worrried it’s something else neuro related. I am diagnosed with PA.

[Nonameme in reply to lb9999]

it has really set me back in more ways than I imagined it would. If I am honest what has/is troubling me more than anything is the realisation there is nowhere to turn - we have reached the end of the line it is one thing to acknowledge the NHS has reached the end of the line but accepting what that actually means is devastating especially as one reaches a certain life stage when there should be comfort for the future problems. I am truly terrified that as things health wise deteriorate I do not know where to turn!

I was told to attend a department I did not know 5 days on from this last event. Told to be there before midday. As parking is difficult and involves a ten minute walk to reach main entrance I decided to arrive for 10am and of course raining heavily so walked rather than put mobility scooter together so was close to collapse and soaking wet by arrival in what was the fracture clinic. Told to sit anywhere place was jam packed. After one hour a nurse came and took observations and said she would let drs know I was there. At 1pm fracture clinic closed and all staff left department. There were about 10 people left! Again no food etc available for diabetics etc. one lady who had been there prior to my arrival was taken to a room by nurses who arrived shortly and another young lady was brought into department by wheelchair and dumped in a plastic chair she looked so unwell and managed to get to a bariatric seat and laid down. Shortly thereafter the lady who had obviously had a dressing changed came back to waiting room then left. A minute or two later someone from the corridor outside came in asking for help for someone collapsed outside. There were no staff so I went to see if I could help. It was the lady who had just left. Between us we got her laid down in recovery position. The two nurses appeared made her a cup of tea gave her a prescription and said she should leave! At that time I was called into a room where I was asked had I finished tablets was there any further swelling or discharge how did I feel Oh it will take a few days to feel better your observations are fine -discharged. Time 2.45pm! Not fit for purpose.

[Nonameme in reply to Marlboro123]

Hard to put into words. I do not know your age but I am 78 and well remember the good ol’ days. There is a society of ‘passing the buck’ which I find mind blowing these days. During the hours sat there my mind wandered back to ‘time and motion study’ and without wishing to detract from the thousands of trained and dedicated staff they are just either not given the chance to act upon their training or, and it appears more likely are forbidden from showing any kind of ‘feelings ‘ towards patients these days. There is such an abundance of multicoloured uniforms these days it is hard to know what qualifications each has but as for instance what I am certain when I entered there was what I assumed to be a staff nurse standing in front of a computer on a trolly During the hours spent observing the department this appeared her primary job She did my vitals but did not interact much with anyone She even missed empty drips and had to be told I was only a couple of feet away but she did not notice mine had finished until another uniform pointed it out to her! She was at my observation not doing nursey things Others just seemed to walk between empty treatment rooms and reception for a chat (sister) so time and motion would have picked up that too many staff were allocated when nothing was moving due to hold ups elsewhere At my observation once the department closed at 8pm there would be A lot of paid staff watching me try and sleep!

The department was not busy so delays were likely elsewhere in the hospital, but tell the patient it would calm many fears. Invest in comfortable waiting areas. Volunteer cafe in hospital shuts at 4pm only very expensive Costas available a little longer if you can travel that far through reasons of illness and being out of department and likely miss something important. Only Carers not relatives are allowed in waiting room so no help there. I could see computer screen from where I was’slumped and all was red (breached)

As I start to heal the thoughts about the last year are now jumping about my head. I already have an unresolved complaint with my gp and with this culmination of events my symptoms are all falling into place you know all the ones that were only ever in my head anyway, even though tests were clearly showing the presence of infection and manifesting into all in the head sufferings. Basic individual tests were for the most part being ignored and next door neighbours were not talking to each other ie Urology and Gynaecology and now looking through my GP Records on 22nd August I apparently sleep walked into an appointment at surgery for Annual Review where certain eyes on observations were carried out, observations were made and all is well for another year no note that some ailments have disappeared many of my medications have changed I am now being monitored for stroke (startling news to me) a completely new nasal spray has been prescribed and ready for collection-that will be interesting on Monday! So am I now completely mad or has something I have been assured in the past cannot happen-happened?

[Nackapan in reply to Nonameme]

This on tol of your pain and discomfort.Totally unacceptable 😑

If it makes you feel any better write it down.

So distressing for you.

PALs at the hospital need to know .

Keep a copy .

Get a friend to take if in or post it.

Only if you feel it with help you with the injustice of lying in that discharge letter.

And the way you were treated .

Always difficult when you unwell and vulnerable

[Cherylclaire Forum Support]

Glad you were able to stand up for yourself - you must have felt very desperate by that point.

Human kindness has become more important than ever - and if you can't feel that, nor even demonstrate common courtesy, there is no place for you in primary, secondary, emergency, residential or home care. Being busy or overwhelmed (or even perhaps a little ashamed) is not an excuse.

I am sorry you went through such an ordeal. Happy you are so much better.

Don't go overdoing it, now !

[Nonameme in reply to Cherylclaire]

Thank you All I am still a little shell shocked at the moment. I did overdo it a bit yesterday I could not believe the lack of fatigue but quite sore today so am taking it easy. I am going to take my time in deciding what to do now. There is one particular physio in particular I would like tell what happened because she made me feel lazy and a liar, but nothing in haste. Have been told when leaving hospital to report to orthopaedic outpatients before midday on Tuesday for test results so will wait and see what is said then. I may try and get a word with GP who told me to contact 111what happened but doubt that will happen. Will let you know of any updates but you know I think what has shocked me is the norm now sadly.

[Cherylclaire Forum Support in reply to Nonameme]

When really upset by treatment received, I often jot down what I can recall soon after. For me, important as some memory issues.

Then I wait and reread it. It usually, even a few days later, seems to need toning down and a more factual account, less emotional one emerges. Like you said : nothing in haste. It can take me 2 or 3 rewrites before I'm able to send it. But that might be just me.

Now, when I look back, I cannot always recall whether I ended up sending a letter, and who I actually decided to send it to .... or whether it was just of benefit to me. Although that is important too.

Now, of course, I have an outlet here. It helps enormously and gives you some perspective where needed. It is often advised here to take someone with you to appointments for support - and that was a necessity for me initially because of losing words, train of thought, memory loss etc.

It is also possible that having a witness can make some of them better behaved ! You might find that copying others into a letter will prompt a more considered response.

We should all ensure that this does not become the norm by being as brave as you were in addressing it there and then - with a captive audience !

[Sleepybunny]

I'm so sorry that you went through that.

Well done for standing up for yourself.

Some UK forum members have left their health stories on the review website - Care Opinion

Care Opinion want people's good and bad experiences of health care.

careopinion.org.uk/

Sometimes GP surgeries and hospitals respond to what is posted on Care Opinion.

Might also be worth talking to your MP.

(Also MS in Wales and MSP in Scotland)

I have also read stories where people have gone to the Press or other media.

This thread about Patient Safety has links for people struggling to get treatment for B12 deficiency.

Some of the links will be applicable to other health situations.

healthunlocked.com/pasoc/po...

I'm not a health professional.