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1/ A long thread - I'm now home after going to the hospital 5 times (yes 5!). I've been failed 4 times by Pinderfields. At first I thought I had an ovarian cyst, had an ultrasound and CT, A&E called me 3 times which my notes would be bluntly clear that I am deaf!
2/ 5 days later, acute agony, back to Pinderfields, found out I had 2mm kidney stone! Was admitted to a ward for 2 days. Now diagnosis changed to endometriosis (I was dubious because the pain was different to what I was used to)
Non stop flow of Oramorph to cope with pain
Non stop flow of Oramorph to cope with pain
3/ Pinderfields liaises with Hull gynae who I'm under. Usual gynae on annual leave. Pinderfields did ultrasound which came up inconclusive 🙄. Fobbed me off with painkillers. Home after 2 days.
9 days later of trying to manage pain at home, acute pain kicks off....
9 days later of trying to manage pain at home, acute pain kicks off....
4/ back at Pinderfields A&E, finally found out that no one has told me that I've been referred to Stone clinic (!)
Home again....
4 days later, had a terrible weekend of agony, decided to go to the gp to see if I can get them to do something, bawled my eyes out in agony in GP
Home again....
4 days later, had a terrible weekend of agony, decided to go to the gp to see if I can get them to do something, bawled my eyes out in agony in GP
5/ room. Gp calls for ambulance. Back to Pinderfields A&E, had a terrible time in A&E with rude nurse and doctor who REFUSED to remove their masks. Felt so helpless and vulnerable.
Moved to a ward. Absolutely drugged up to eyeballs (communication goes out of the window
Moved to a ward. Absolutely drugged up to eyeballs (communication goes out of the window
6/ so lipreading doctors and nurses becomes a HUGE challenge. Finding that I'm struggling to retain information after seeing the doctors who came to see me in the night. (Now I realise it's a safeguarding issue because I can't advocate myself or make informed decision about my
7/ own healthcare.
Docs organise surgery to see if I have kidney stones. Takes place on following day. Came around in recovery in screaming agony & very nauseous. More and more pain relief.
Remember telling the recovery nurse that something is seriously wrong.
Docs organise surgery to see if I have kidney stones. Takes place on following day. Came around in recovery in screaming agony & very nauseous. More and more pain relief.
Remember telling the recovery nurse that something is seriously wrong.
8/ was in recovery longer than they expected, 5 hours later they move me to a ward.
Had several acute pain attacks over the next few days. Remembered one important sentence doc told me - if no kidney stones - refer me to gynae to see me. Over that week, no gynae doctors came.
Had several acute pain attacks over the next few days. Remembered one important sentence doc told me - if no kidney stones - refer me to gynae to see me. Over that week, no gynae doctors came.
9/ cos they don't "want" to see me and tried to palm me off to Hull gynae. Saw pain specialist and organises pain management.
Was getting so fed up and pissed off because over 4 occasions, not ONCE they organised communication support despite me requesting, nor being proactive
Was getting so fed up and pissed off because over 4 occasions, not ONCE they organised communication support despite me requesting, nor being proactive
10/ To ASK me if I need comms support.
It was coming up to a bank holiday weekend, I knew I wouldn't see anyone at all, as docs was going to discharge me. It may not be the right thing I did, I discharged myself because I had no faith in doctors to do the right thing.
It was coming up to a bank holiday weekend, I knew I wouldn't see anyone at all, as docs was going to discharge me. It may not be the right thing I did, I discharged myself because I had no faith in doctors to do the right thing.
11/
I left a note for the ward sister to read and explained it no way reflects badly on the nurses cos they've been brilliant and they've managed to communicate with me with masks down, and held my hand during acute pain attacks with tears rolling down my face.
I left a note for the ward sister to read and explained it no way reflects badly on the nurses cos they've been brilliant and they've managed to communicate with me with masks down, and held my hand during acute pain attacks with tears rolling down my face.
12/ It's just I've been badly let down by the docs for not taking me seriously.
I told them over and over that I have problems passing urine, with pain before and after, frequently and often no urine or a trickle. That fell on deaf ears.
Was happy to be home but dreaded the
I told them over and over that I have problems passing urine, with pain before and after, frequently and often no urine or a trickle. That fell on deaf ears.
Was happy to be home but dreaded the
13/ acute attack.
Few hours later, a Gynae doctor calls our home number (urgh they don't learn !!), was told by mum that he didn't want to be on the phone for long and wanted to get off. Mum explains you should have turned up earlier this week instead of wasting my daughter's
Few hours later, a Gynae doctor calls our home number (urgh they don't learn !!), was told by mum that he didn't want to be on the phone for long and wanted to get off. Mum explains you should have turned up earlier this week instead of wasting my daughter's
14/ time.
Managed to control the pain myself so far so good....
Saturday 29th- collapsed in absolute agony from right kidney to pelvic area, threw up several times. Worse pain I've ever had in my entire lifetime.
Went to Leeds St James A&E. Doc there said...
Managed to control the pain myself so far so good....
Saturday 29th- collapsed in absolute agony from right kidney to pelvic area, threw up several times. Worse pain I've ever had in my entire lifetime.
Went to Leeds St James A&E. Doc there said...
15/ enough is enough. Something is definitely going on, probably endometriosis on the ovary, ureter and possibly kidney. Notifies Hull to pull their finger out.
Home on that day, armed with information re pain management.
I'm still not right, I know something is wrong.
Home on that day, armed with information re pain management.
I'm still not right, I know something is wrong.
16/
Sometimes I have my mother with me to help with communication but she has her own health issues & due up for lung surgery. She hasn't been able to come help with docs hence requiring comms support.
So far I've video called mum during doc rounds cos no way to lipread them
Sometimes I have my mother with me to help with communication but she has her own health issues & due up for lung surgery. She hasn't been able to come help with docs hence requiring comms support.
So far I've video called mum during doc rounds cos no way to lipread them
17/
This whole saga shows huge failings in safeguarding, failure to honour my legal requirement to communication support as per to Equalities Act 2010, Accessible Information Standard, and Care Act.
I will be escalating the complaint & get to the root of my problem.
This whole saga shows huge failings in safeguarding, failure to honour my legal requirement to communication support as per to Equalities Act 2010, Accessible Information Standard, and Care Act.
I will be escalating the complaint & get to the root of my problem.
18/
Let this be a lesson to all #doctors that you have a duty of care and responsibility to your deaf/HOH patients.
Please be proactive by asking us if we need communication support, write things down, remove the mask & communicate socially distanced.
#DeafAwarenessWeek
Let this be a lesson to all #doctors that you have a duty of care and responsibility to your deaf/HOH patients.
Please be proactive by asking us if we need communication support, write things down, remove the mask & communicate socially distanced.
#DeafAwarenessWeek
@UnrollHelper unthread please
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