NHS - good & not so good stories

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When my sister was in hospital with a brain tumour, two consultants had different ideas on her meds, one decreased her anti-fit meds and she had a huge fit that caused her to be paralysed all down her right side.

After that, I see some awful sights. She kept having fits and we would press the nurse buzzer and nothing, even though nurses were at the nurse station chatting... My sister was in the furthest ward in the furthest bed away, even though she was constantly having fits. Turned up one morning to see her sobbing with her breakfast in front of her they had put the tray on her table and left her to it. ( not the first time apaaprtily) bearing in mind she had no use in her right side and was right-handed. butter in a little tub, jam in a little tub, no way to hold the toast while she buttered etc. Hot tea etc WTF?

I went home got my bag and moved in and became her carer in the hospital.. She wanted to come home to die and so I had to prove I could lift her on my own from bed to wheelchair and back etc in front of consultants, Got her home ( sounds easy but it wasn't, it was awful and scary as they didn't want her to come home) She was so scared of being taken back into that hospital she made a DNR order and we had to have it with us all the time.
I am so sorry to hear this. My heart goes out to you. At the same time I am glad to read your dearest sister got to go home and be surrounded by her family and familiarity in the final moments of her journey.

This sounds almost identical to my mothers story. My aunt and her partner really put up a fight to take my mother to her home to pass away. She was undergoing all the checks to see if she was physically capable with lifting, etc. She was even midway through having a downstairs wetroom installed specifically for her. It just didn't happen. My mother was put on the Liverpool pathway it is believed as we were seriously warned against giving her any fluids at all! She passed away on mothers day before my aunt got the chance to take her home.

The brain hospital in Russell Square was great. My mum battled this tit for 10 whole years and this place was like a 2nd home at times... Then she deteriorated after she developed a second tumour, my mum was a fighter, if she believed she could, she would... But she would also constantly ask the doctors how long she had left, most would say "it's difficult to tell just yet". But one doctor that had barely seen much of her, gave her a ballpark figure of approx 6 months based on the type of tumour, rather off the cuff and quite unprofessional on the ward, doing rounds. That day I saw my mother's head slump forward and never sit tall again. Her body went limp, she wouldn't stand up and get out of her chair, she went grey in the face and gave up all fight that day. She lost her sparkle and although she looked absolutely terrified, she was now 'going with the flow'. It was terrible to witness. I'd never seen my mother like that before. 3 months later she had passed on. I really am unhappy with the doctor just telling her like that, no councillor present or anything. You're being told off the cuff you're going to die in 6 months matter of factly with no body to talk about it with afterwards. Imagine! This one doctor let this particular hospital down.

I took an overdose at 14, went to A&E where I saw a psychiatrist who advised me to write poetry instead of self harming & sent me on my way
Also been told 'if you really wanted to die you would have done it by now'
The worst I think was a nurse who literally told me to 'try harder next time' after a suicide attempt...absolutely disgusting
I can second questionable comments like this coming from NHS staff. 20 years ago the approach to teenage mental health was absolutely brutal. Many workers would be sacked if they took such approaches in this day and age. I was sectioned off as a youngster... In Central Middlesex I was manhandled by two huge male nurses and sedated in a padded room.... I had flipped a vase containing flowers and water off the side in my angst at being 17 and contained in a place which felt second to a jail. One of the male nurses used my hoodie under his foot to mop the water up while grinning at me, so I exchanged a few nasty words, was frogmarched off and sedated. Really unessersary.

NHS Tip, if you want nicer food in hospital, ask for the ethnic menu!!!
 
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Oh boy am I glad to see this thread. Hold onto your hats folks, this ones a doozy.
In 2016 after 24 years of constant tonsillitis and being fobbed off by doctors I was finally given the op to take them out. They messed it up really badly, bleeping up my sinuses along the way. And I developed an infection due to their negligence. This was just before Christmas. Christmas Day I felt woozy but carried on, by 4pm I had a sore throat and chills, and then by bed time I was blacked out in pain with a raging fever. Husband took me to hospital Boxing Day, they sent me home after leaving me in a corridor for 12 hours with some paracetamol. I don’t remember the next 2 days, apparently I just slept and cried. I got dehydrated and my fever got so bad I hallucinated, husband called 111 and they sent an ambulance. I had sepsis and had gone into septic shock. At the hospital they saw blood results from Boxing Day showed sepsis but they sent me home. I had to have several lumbar punctures which were done by a trainee and messed up so badly. It ended up being 19 attempts before the doctor said enough is enough. The surgeon did it the next day with x-ray. I lost the sight in the top half of my right eye right after the failed attempts and it has never returned.
I had sepsis 4 more times in the next 8 months. The 5th time I was sent to the next closest hospital as there was no ENT at ours.
Here, a vulnerable person (due to MH), alone, miles from home and terrified of hospitals a crappy doctor came in and said there HAD to be a reason for my recurrent sepsis and infections. I tried to explain it was the bodged op, he said I didn’t know what I was talking about. He discussed my case outside with the other doctors and came back and told me I had HIV. Now, i know everyone is technically a risk but I am the furthest from a risk I feel anyone can be. My only sexual partner has been my husband, who was also a virgin. I don’t do drugs. I am too terrified of everything to take risks. He was adamant though. He took blood and said it would be confirmed within 2 days, and sent me home.
A week later I called my GP and turns out they’d lost the bloods. So I had to have them done again. And wait all over again. My anxiety got the better of me and I had a breakdown, convinced I was going to die.
Unsurprisingly I do not have HIV. I had complications from a bodged operation that left part of the chronic infection in my throat/sinuses.
As a result of the multiple sepsis attacks I’ve got brain damage that can’t be reversed, ptsd from my treatment, all my hair turned white, and I have a completely useless immune system.
Eventually I begged to be sent to a different hospital over an hour away. They did the op, removed the infection from my sinuses and throat, and all my problems have disappeared. Never had an infection again.
Just vision loss and other lasting effects left. But I 100% lost all of my faith in the NHS during this time.
I know I’m lucky. I very nearly died. But it all could have been avoided.
I shared this story in a fb group once and people said I made it all up. I really wish I had tbh. Scarred for life.
 
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I’ve had a mixed bag. I’ve had pockets of people who have been wonderful who have truly stayed with me in terms of care. Nurses who stayed up with my after I had to have life changing surgery, who took the time to wash me after I was covered in iodine, who were patient with me when it took 3 hours to change dresssings, who allowed me to go home for the weekend for my mental health.
I’ve also had some who refused to take me to the toilet and forced me to use a bedpan at 19, who made me feel like they were doing me a favour, who haven’t listened, who have been rude and ignored me.

I’m not above saying when I’ve had great treatment but I also hate this whole you must never criticise and say anything negative, be grateful for having substandard treatment. This is ours, we should drive improvements, we shouldn’t be distressed trying to get a GP appointment, we shouldn’t watch out elderly family sit in their own soil. I think there is huge amount of mismanagement and waste in the NHS that has had billions pumped into it every year. It’s on its way to becoming unfit for purpose since people can’t access treatments they need easily.
 
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My sister has suffered a long 8 years of unknown bowel issues. They leave her in so much pain they often leave her really incapacitated and in hospital when an episode strikes. 8 years of various blood, stool and urine tests, probing, dietary monitoring, chronic pain relief techniques. Nothing has been found which constitutes episodes of severe abdominal cramps, bowel issues, vomitting and so much pain she goes weird and delerious. She has many a tale to share including being given wrong medication, to being left in trolleys, ignored, patronised, fobbed off.

She is pretty vocal about the NHS doing little for her in the long term, other than plying her with addictive, heavy duty pain which are mind altering rather than finding the root cause. She was my birthing partner and remarked even to the midwives, how respectful and friendly 'the other side of the NHS' is in comparison to what she had experienced. My birthing team were fabulous. I get that they underplay things that are potentially going wrong whilst mother is delivering, but the lady who carried out my episiotomy - and did a pretty botch job at it, was a terrible liar and was giving me mass anxiety, along with the man who gave me my epidural injection, he was pretty much a shaky old pensioner with a dark humour, taking extra time to remind me with great emphasis that it "can leave you paralysed" - I was absolutely terrified and even the midwife slightly bewildered. I gave birth to my son just fine but apparently he had the cord wrapped round his neck whilst still slightly stuck in my birth canal. The team afterwards (lengthy stay) were absolutely amazing. I couldn't fault them one bit!
 
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My sister has suffered a long 8 years of unknown bowel issues. They leave her in so much pain they often leave her really incapacitated and in hospital when an episode strikes. 8 years of various blood, stool and urine tests, probing, dietary monitoring, chronic pain relief techniques. Nothing has been found which constitutes episodes of severe abdominal cramps, bowel issues, vomitting and so much pain she goes weird and delerious. She has many a tale to share including being given wrong medication, to being left in trolleys, ignored, patronised, fobbed off.

She is pretty vocal about the NHS doing little for her in the long term, other than plying her with addictive, heavy duty pain which are mind altering rather than finding the root cause. She was my birthing partner and remarked even to the midwives, how respectful and friendly 'the other side of the NHS' is in comparison to what she had experienced. My birthing team were fabulous. I get that they underplay things that are potentially going wrong whilst mother is delivering, but the lady who carried out my episiotomy - and did a pretty botch job at it, was a terrible liar and was giving me mass anxiety, along with the man who gave me my epidural injection, he was pretty much a shaky old pensioner with a dark humour, taking extra time to remind me with great emphasis that it "can leave you paralysed" - I was absolutely terrified and even the midwife slightly bewildered. I gave birth to my son just fine but apparently he had the cord wrapped round his neck whilst still slightly stuck in my birth canal. The team afterwards (lengthy stay) were absolutely amazing. I couldn't fault them one bit!
Has your sister been tested for Crohn's disease? Often overlooked and misdiagnosed and can take years to be diagnosed- often Drs dismiss symptoms as IBD or 'woman's' problems....you can bet if it was a man they'd be less likely to label them as 'hysterical'
keep pushing for a diagnosis
 
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I changed gp due to still not getting anywhere with my chest. Same bloody issue "its anxiety", "wait until you see the consultant " I've finally got a face to face gp appointment. Hoping they'll do more than chuck the same inhaler at me.
Still being told there's nothing wrong. And been told to give up running. I'm not a doctor but how will that help, if its anxiety? Makes me think they know its physical, they just don't want to say that.
 
Yrs ago I very stupidly got drunk & fell over ‘spraining’ my ankle, I went to the local walk in centre with a bruised & swollen ankle, waited which didn’t mind to be told it was just a bad sprain, no X-ray was offered, just told to rest it, ice packs etc, so off I limped, a few yrs later I fell again this time sober down my stairs & hurt the same ankle, so off again I go to the walk in, bruising wasn’t as bad this time but it was X-rayed, the X-ray actually showed up an old fracture, so I had actually been limping around on a fractured ankle & never knew about, I just took their word for it that it was just sprained, I still to this day have trouble with my ankle!
 
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My sister has suffered a long 8 years of unknown bowel issues. They leave her in so much pain they often leave her really incapacitated and in hospital when an episode strikes. 8 years of various blood, stool and urine tests, probing, dietary monitoring, chronic pain relief techniques. Nothing has been found which constitutes episodes of severe abdominal cramps, bowel issues, vomitting and so much pain she goes weird and delerious. She has many a tale to share including being given wrong medication, to being left in trolleys, ignored, patronised, fobbed off.
She is pretty vocal about the NHS doing little for her in the long term, other than plying her with addictive, heavy duty pain which are mind altering rather than finding the root cause. She was my birthing partner and remarked even to the midwives, how respectful and friendly 'the other side of the NHS' is in comparison to what she had experienced. My birthing team were fabulous. I get that they underplay things that are potentially going wrong whilst mother is delivering, but the lady who carried out my episiotomy - and did a pretty botch job at it, was a terrible liar and was giving me mass anxiety, along with the man who gave me my epidural injection, he was pretty much a shaky old pensioner with a dark humour, taking extra time to remind me with great emphasis that it "can leave you paralysed" - I was absolutely terrified and even the midwife slightly bewildered. I gave birth to my son just fine but apparently he had the cord wrapped round his neck whilst still slightly stuck in my birth canal. The team afterwards (lengthy stay) were absolutely amazing. I couldn't fault them one bit!
So sorry to hear your sister is going through this. I’m sure they probably have covered this, but have they done an ultrasound to look for gallstones? I had to have mine removed as an emergency a few months ago due to gallstones and those symptoms sound pretty similar to mine. It’s like attacks of pain, but once they stop you tend to feel fine again unless you experience complications (which I often did - I would go jaundice and develop infections/inflammations because they kept getting stuck). However, if your sister just had biliary colic, where one just passes through but can cause excruciating pain, it may not have shown up on bloods or they may not have tested for the right things. I remember my liver function tests were sky high, but I don’t think they routinely check that in bloods (could be wrong though). The pain usually lasted anytime from half an hour to 4/5 hours before it would go as quickly as it came on and was the worst pain I’ve ever had in my entire life. Often accompanied by symptoms similar to your sister - vomiting etc and attacks would always happen in the middle of the night. Just wanted to let you know incase they hadn’t tested her for gallbladder issues, as the symptoms do sound quite similar.
 
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The bowel issues could also be ulcerative colitis or coeliac disease. Serology testing could find autoantibodies too.

She needs real treatment either way. Has she even had a colonoscopy done ?
 
My sister has suffered a long 8 years of unknown bowel issues. They leave her in so much pain they often leave her really incapacitated and in hospital when an episode strikes. 8 years of various blood, stool and urine tests, probing, dietary monitoring, chronic pain relief techniques. Nothing has been found which constitutes episodes of severe abdominal cramps, bowel issues, vomitting and so much pain she goes weird and delerious. She has many a tale to share including being given wrong medication, to being left in trolleys, ignored, patronised, fobbed off.

She is pretty vocal about the NHS doing little for her in the long term, other than plying her with addictive, heavy duty pain which are mind altering rather than finding the root cause. She was my birthing partner and remarked even to the midwives, how respectful and friendly 'the other side of the NHS' is in comparison to what she had experienced. My birthing team were fabulous. I get that they underplay things that are potentially going wrong whilst mother is delivering, but the lady who carried out my episiotomy - and did a pretty botch job at it, was a terrible liar and was giving me mass anxiety, along with the man who gave me my epidural injection, he was pretty much a shaky old pensioner with a dark humour, taking extra time to remind me with great emphasis that it "can leave you paralysed" - I was absolutely terrified and even the midwife slightly bewildered. I gave birth to my son just fine but apparently he had the cord wrapped round his neck whilst still slightly stuck in my birth canal. The team afterwards (lengthy stay) were absolutely amazing. I couldn't fault them one bit!
Has she been tested for ehlers-Danos syndrome? I think that’s how you spell it. Sounds very similar to problems someone I know had/has
 
Thankyou for the feedback regarding my sister's mystery illness. Crohn's was ruled out, along with Fibromyalgia and a bunch of other things like Sickle Cell and so on. She has had probing cameras... Nothing. I will certainly mention some of the ones I haven't heard of, that a doctor may have overlooked. As after finding nothing the GP has marked it down to... "anxiety".

It isn't nice to witness when she is having a really bad attack, they come at least every 2-3 months lasting around a week or two, almost always end up in hospital stays for pain management. She can literally look like she is possessed, because the pain is so bad it makes her delirious. She can manage the day to day pain by spending hours at a time in a really hot shower. But that's no way to live a life. Whatever it is, she screams like a woman in labour.
 
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A great article I believe. He’s right, the NHS does need a radical overhaul and not more money thrown at it.
Some parts that stood out to me:
‘The value of healthcare 'free at the point of use' is seen as part of Britain's identity. But the sense that the NHS is something we must applaud and worship, rather than critique like any other official body, does not serve us well.
The feature so often proclaimed as unique — universal coverage, free at the point of need — is in fact the norm across the developed world.’

‘Frankly, the NHS gets an awful lot of credit just for simply doing its job. In the same way, we tend to think that crises somehow happen to the NHS, not because of it.
The reality is that it is not normal for a health service in a rich country to have a flu crisis every winter.
We expect to wait months for an operation and are pleasantly surprised if we wait less than several hours in A&E.
We are meant to be impressed by being able to see a GP today, even though we called yesterday. Services that would be substandard in many countries are regarded in Britain as normal, if not excellent.’

‘In 2014, a league table by the Commonwealth Fund found that Britain performed well on 'access', 'equity' and 'care process' but came second-last for 'health care outcomes'.
What does that mean? As the Left-wing Guardian newspaper put it, the 'only serious black mark against the NHS was its poor record on keeping people alive.’

‘Some like to blame budget cuts, but in 2019, the UK spent 10.3 per cent of GDP on healthcare — some £177 billion… the health budget has risen every single year in real terms in the last decade.
Where does all this money go? Scandalously, a great deal is spent on pumping up the pay cheques of the managers, management consultants and bureaucrats (many earning more than the prime minister) who make up a hefty slice of the 1.4 million people working within the NHS.’


 
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I have written in this thread before and thought I’d highlight something that happened today.
Rang for a doctors appointment all last week and this week to no avail. Asked what I actually needed to do to see a doctor to be told by the receptionist ‘they will only see you if it’s an emergency’
And here’s me thinking my local A&E was where I go if it’s an emergency.
 
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40 weeks pregnant turned up for my midwife appointment apparently at the wrong time I didn’t because I wrote it in my phone like I do every time told I couldn’t be seen…. For another two weeks 🤔 had high blood pressure couldn’t get through to the doctors to even get it monitored now travelling 30 mins each way twice a week to the hospital as it was easier than trying to speak with the doctors. I have seen 12 different midwives during my pregnancy they have forgot prescriptions for me the list goes on. 😑
Prior to this had some fertility tests said I had pcos and nothing more…. Had an early scan after my surprise pregnancy 🤰🏽 and was told actually only one of my ovaries worked no wonder it’s taken me so long to get pregnant!
 
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I have written in this thread before and thought I’d highlight something that happened today.
Rang for a doctors appointment all last week and this week to no avail. Asked what I actually needed to do to see a doctor to be told by the receptionist ‘they will only see you if it’s an emergency’
And here’s me thinking my local A&E was where I go if it’s an emergency.
Mine will only see you if its deemed necessary. I for example, needed something for my vertigo a few weeks ago. I didn't need to see a gp and got a call back.

After almost every gp I've sen over the last 10 months telling me its anxiety or there's nothing wrong, I'm now finally being listened to. No closer to a diagnosis though.
 
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It seems people get better treatment from the NHS if it is obvious what is wrong, and the patient is recovered after treatment, for example broken bones in an accident, rather than symptoms that need investigating and ongoing care.

When visiting the doctors for a symptom, in the NHS, the eliminate the least serious possibility first, and often it seems like they dismiss the option that it may be more serious , sometimes until it is too late.

I have heard that in countries where you pay to see a doctor, they eliminate the fact it could be serious initially ( as I heard from someone who had a biopsy in the usa)
 
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40 weeks pregnant turned up for my midwife appointment apparently at the wrong time I didn’t because I wrote it in my phone like I do every time told I couldn’t be seen…. For another two weeks 🤔 had high blood pressure couldn’t get through to the doctors to even get it monitored now travelling 30 mins each way twice a week to the hospital as it was easier than trying to speak with the doctors. I have seen 12 different midwives during my pregnancy they have forgot prescriptions for me the list goes on. 😑
Prior to this had some fertility tests said I had pcos and nothing more…. Had an early scan after my surprise pregnancy 🤰🏽 and was told actually only one of my ovaries worked no wonder it’s taken me so long to get pregnant!
I have had 2 babies and I have found some of the midwives that dealt with me to be the kindest, most thoughtful and wonderful people. So good at their job and thankful I had them to support me! However... I also came across a few terrible, rude and careless ones... I had a really traumatic 2nd labor and one particular midwife was just so horrible to me. I try to block those memories out though.
I'm actually thinking of applying to do midwifery at uni next year! Would love to help and support other women, no matter who you are pregnancy is such a roller coaster of emotions and a vulnerable time. It would be my dream job !!
 
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I have had 2 babies and I have found some of the midwives that dealt with me to be the kindest, most thoughtful and wonderful people. So good at their job and thankful I had them to support me! However... I also came across a few terrible, rude and careless ones... I had a really traumatic 2nd labor and one particular midwife was just so horrible to me. I try to block those memories out though.
I'm actually thinking of applying to do midwifery at uni next year! Would love to help and support other women, no matter who you are pregnancy is such a roller coaster of emotions and a vulnerable time. It would be my dream job !!
This is exactly why I’m currently doing an access course, to become a midwife. My first pregnancy was terrible, midwives believing I didn’t know what was best for me, trying to do procedures on me without consent.
2nd time round I had the most amazing supportive midwives, and my birth went exactly to plan, I was so much more relaxed. That’s why I want to be a midwife, I want to be that kind of midwife for every woman
 
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I have had 2 babies and I have found some of the midwives that dealt with me to be the kindest, most thoughtful and wonderful people. So good at their job and thankful I had them to support me! However... I also came across a few terrible, rude and careless ones... I had a really traumatic 2nd labor and one particular midwife was just so horrible to me. I try to block those memories out though.
I'm actually thinking of applying to do midwifery at uni next year! Would love to help and support other women, no matter who you are pregnancy is such a roller coaster of emotions and a vulnerable time. It would be my dream job !!
I had a similar experience post birth with my eldest, it was a traumatic birth where I needed assistance and I was in a lot of pain afterwards due to having an episiotomy. I had to stay in for nearly a week post birth for reasons I’m still not entirely sure about. Some of the midwives I encountered during my stay were so rude and impatient with me. One night I was struggling to get my baby to feed from me, she had been crying for hours, the woman next to me who was on her third kid, had complained and basically told me to get my kid to shut up, I finally gave in and pressed the help button. Midwife comes to my cubicle, I explain that I can’t get her to latch. Her response was not to help or give advice, she said “well if you can’t get her to latch then we will have to give her formula”. Don’t get me wrong I am not anti formula but I had done a lot of reading about breastfeeding as I really wanted to give it a go and I just knew that giving formula at that time wasn’t the best thing, what I needed was someone to show me how to get her latched properly as I just couldn’t get the hang of it. In the end I taught myself by watching videos on YouTube, whilst in the bloody maternity ward. Thank the lord for smart phones.

Later in my stay another midwife made a rude comment about how ‘messy’ my cubicle was. It was only ‘messy’ because they were keeping me in and not telling me when I might be able to go home so people had to keep bringing things in for me and the baby. Anyone who’s had a baby knows that stuff just accumulates when you have a newborn. They forever need nappy changes and clothes changes. I only had a few bags next to my bed hardly the end of the world and people were taking things home for me too, I’m not sure what they wanted me to do. My partner was fuming at this comment but I made him stay quiet. I was a young mum in my early 20’s and just felt judged and unsupported during my first few days as a mother. It really wasn’t how I expected things to go.

The experience with my second born was much more pleasant. I gave birth in the evening, was a pro at breastfeeding by then so had already got her latched before the midwife could even ask how I was feeding, and I was sent home the next morning. I couldn’t believe how different the experience was. Everyone was much more pleasant and helpful towards me. Maybe it was because I needed less help but I wish I had felt so valued the first time around as that’s when you really need the support imo. But instead I felt like I was being a pain in the arse and looking back it did affect me for a while after wards.
 
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I’ve never had to be in hospital before until recently. I turned up for a routine midwife appointment at 29+6 days where my blood pressure was sky high and there was protein in my urine. Me and baby were monitored in triage for an hr- my blood pressure, her heartbeat and movements, bloods were also taken. After an hr and doctor came to see me to tell me I had severe pre eclampsia and my pregnancy probably couldn’t continue and baby was more than likely going to have be delivered with in a couple of days. This was so scary and I cried (a lot) but the level of care myself and baby received from this point was incredible. Wonderful nurses and midwives who also kept checking I was ok. Surgeons and doctors coming to reassure me and explain procedures so that I was kept in the loop.
My C-section went so well, it could have been far worse (my placenta was all over the place and they had warned me of extra bleeding, were ready to offer me a transfusion for blood loss and possible hysterectomy) but they were so careful with me I had little blood loss and would be able to go on to have a vaginal birth if pregnant again.
My baby has now been in neonatal care for all most 5 weeks. She has been so well looked after and is coming on amazingly. Hopefully won’t be long till we can bring her home. The neonatal unit was initially a very scary place- seeing your helpless tiny baby covered in wires and hooked up to so many machines. Traumatic to see really. But I’m so grateful for all the care she’s received from drs and nurses. I can’t thank the NHS enough for potentially saving both our lives.
 
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