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Why is pain not taken seriously in hospital?

There’s 6 days to go before my surgery and I’m terrified. But you know what sucks? That the thing I’m most scared about is being left in pain on the wards after surgery. It’s 2019 and I’m not afraid of the surgery but that I won’t be given pain relief. How is this OK?

On three occasions now I have been left in agony on the wards after having major operations. Usually in the day after the epidural is taken down. The pain relief is not adequate or more likely not given at the right times by nurses.

What is happening with the NHS and pain?

You know that I love the NHS, I feel so lucky and blessed to have free at the point of use medical care. It’s something we should be protecting but something is going majorly wrong here.

I have been left multiple times sobbing and crying in agony on wards. Just begging nurses to please get me some pain relief. Ive had nurses ignore buzzers, walk right by me whilst I’m writhing and hysterically crying.

I tried to discharge myself from hospital after my last operation just 3 days post surgery because the care was so dire.

Why is it that weekend wards seem to include some terrible nurses on the teams? Of course not all nurses, but I’ve found in each of the 7 previous surgeries that the care goes massively downhill at weekends.

Pressing the nurse buzzer in hospital pain relief

Despite putting plans in place last time and seeing a specialised pain team before they took down my epidural and warning them of my fears that I wouldn’t have adequate pain relief and having my husband there as an advocate writing everything down. But the following day the nurse seemed reluctant to give me the pain relief. She said she’d be back and left me for well over an hour sobbing. She kept walking past my bed and pretending she couldn’t see me.

And others tell me the same story, that their pain is not taken seriously. That nurses especially on weekends are either extremely late in giving pain relief or make excuses and they are left in agony.

So why is it that our pain isn’t taken seriously in hospital?

How is it that my biggest fear of a major op is that pain medication will be withheld? I’m so frightened of this happening that it makes me not want to go in for the surgery.

I spoke to the Pre op nurse about this, her advice? Kick up a fuss. Don’t be a “good quiet patient”. Demand to see the ward matron and if nurses won’t do that then phone the switchboard. Ask to be put through to the ward matron and tell them the bay and bed you are in and that the nurses are not giving you adequate pain relief. Then call PALS and put in a formal complaint.

Honestly this doesn’t sit well with me, I hate to be a bother. I know that the majority of nurses are so hard working, passionate and brilliant. I know they’re under paid and over worked. But there are a few rotten apples who are ruining it for everyone.

Being a “good patient”

There are many reasons that patients don’t complain. From a lack of knowledge to inability due to physical or mental health . Also a fear of how your complaint will affect your future care and wanting to be a “good patient”.

But being a “good patient” is not about sitting in pain because you don’t want to bother the nurses. Being a good patient is about being a responsible participant in your own health. I read a book that said that “good patients” die more than people who are active in their health and recovery. Struggling in pain worsens your recovery and outcome and so we should be ensuring we have proper care.

But if a confident and outspoken person like me has been failed with pain relief and post op care then how many others without a voice are there? How many older people who don’t want to cause a scene are laid in pain? How many people too anxious to press their buzzer more than once?

What can we do about pain?

When you’re in hospital after surgery you are at your weakest, you have little or no control and are completely vulnerable. Yet we are being let down.

This issue has given me panic attacks, I’ve had to write this in a few sittings as my hands are shaking and I can’t breathe when I think about my surgery next week. When I think about it, I’m taken back to the pain, the tears, the begging. I’m taken back to a vicious old bitch of a nurse walking past me several times. To her rolling her eyes as I cried in pain and finally stabbing me hard in the arm with the morphine jab. To phoning Timm and begging him to discharge me as I had no trust in the nurse now. And I’m terrified it’s going to happen again.

Timm did come last time, he demanded to see the matron and get some answers as to why we’d seen the pain team that morning and had a plan in place and why it was ignored. He got me moved to a new ward and a promise that nurse wouldn’t come near me.

He has said he will be there this time and make sure it’s all ok and I have a back up plan.

But it shouldn’t come to this when all we are talking about is some painkillers.

And I still can’t answer the question of why our pain isn’t taken seriously.

✌🏽& ❤️

Sam

How to not be a dick patient in hospital

I have spent a lot of time in hospital on the wards, it adds up to months and months of my life and in that time, I have seen a lot.  Mostly good stuff, but some things that set my teeth on edge!  I love our NHS, we are so lucky to have one of the best health care systems in the world that is free at the point of use.  Our NHS is run on nurses, wonderful, brilliant, hard working nurses, as well as a whole plethora of support staff, doctors and surgeons who work together to give us outstanding care.

I know it goes wrong sometimes, I have had the odd bad experience with nurses and doctors and that’s not ok.  But you know what is really bloody wrong? The amount of crap nurses have to put up with from some patients, and so I thought I would give you my guide to avoid being the patient everyone dislikes, how to not be the one who sets the staff’s teeth on edge, how to not be a dick patient in hospital.

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Be polite.

It’s a simple one, but oh, so important.  I know you may be in pain, frightened, at your lowest ebb, but manners cost nothing.  Say please and thank you.  People are doing things for you, therefore you should thank them for their time and effort.  Need a bed pan? Don’t demand, ask nicely.  Has a member of support staff just cleaned your shit up? Say thank you!

You aren’t more important than anyone else

Your illness is important to you, but your pain and suffering is no more or less important than anyone else on the ward.  Your needs will be prioritised by someone in the know.  Don’t assume you should get attention above others.  I have seen it a million times when a patient calls your nurse away from you.  Wait your turn!

Be humble

If you are laid in bed and unable to do anything for yourself then no matter how much money is in your bank or how important your job is, you are at the bottom of the food chain, so be humble and grateful to those around you.  That woman mopping the floor is currently lapping you, so thank her.  The man making you a cup of tea is beating you in the ‘being able to get out of bed, go to work and make tea’ status, so smile and be grateful.

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Don’t be a dick

I know you may be in pain and feeling terrible, you are probably scared and shaken, but don’t be a dick about it.  The staff know it is hard being a patient and want to do everything to make you comfortable, they don’t deserve to be shouted at, mocked or abused.  I have heard patients loudly comment about nurse and support staff’s weight, appearance and sexuality.  Not cool.  Not cool at all.

Speak up, don’t scream out

If you are struggling, speak up.  But don’t scream out.  It can be frustrating and anger inducing to be in hospital, but don’t lay this at the feet of the people caring for you.  They are at work and doing their job, they are human and don’t deserve to be a verbal punching bag for you.

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Be respectful

Respect is a two way street, I have seen patients scream at nurses, call them names and then whinge that they aren’t liked and everyone ignores them.  The people caring for you are doing a tough job, give them credit for caring for you for little more than the living wage.

Think of your fellow patients

You may be at your lowest point, but it’s likely that so are the other 7 people on your ward, so think of them too.  Keep the noise down, smile at them, don’t be nosy about their private medical needs.  “So, what you had done?” is never really an ok question in my books.  If people want to talk about themselves they will, don’t pry.

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If it’s good, say so…

If you are receiving great care, then say so, thank the person, tell them how much of a difference they are making to you.  If you feel a certain person has made your life so much easier, then let them know.  My nursing friends tell me that even in their worst nightmares of shifts, the praise and gratitude of one patient can make it all better.

 

So much is put on the behaviour and attitude of NHS staff, and rightly so.  They should have to behave in a way that is respectful, caring and professional, but us patients have our role too and we need to think of others even in our own greatest time of need.

 

Sam x

Giving nurses a bad name

I came across this picture on Instagram by nurse_student, now whether she thought it cute or funny I do not know but I am fuming.

 

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Id like to say that I responded with a calm, witty devastating put down.  I can’t.  I said “Wow.  I hope you are never my nurse, because if you acted like you wanted to throw up and took the piss whilst doing your fucking job, I would kick your ass.  You give nurses a bad name.”

Id like to explain how it felt when I saw this ‘joke’, I know that nurses have to deal with a lot and sometimes having a sense of humour is the only way to get through a shift, but nurses are supposed to be carers, people who are patient and sensitive.  This ‘joke’ made me cry.

Let me take you back seven months.  I had been through ten years of illness, pain, humiliation, meds and treatments and then just come out of major surgery to remove the whole of my fucking bowel.  I was hooked up to an epidural and had a catheter, I was dosed up on all manner of pain relief and had zero control over my body.  I was having to deal with the fact I had a stoma emotionally and physically.  Having to learn a new set of skills to be able to change my bag and clean myself as well as ‘mourning’ the loss of my bowel and learning to accept my new body.

It was the hardest time of my life.  I have never felt so overwhelmed, exhausted, terrified and alone in my whole life.  I was entirely dependent on those around me and I felt like shit.

Then I had my first leak.  I was covered in shit from my chest to my hips.  It was everywhere and I was mortified, I couldn’t stop crying and I was so embarrassed.  I rang the bell and a nurse came.  She looked at me and said “Oh dear, you poor thing! Come on lets get you sorted.”

She cleaned my skin and dealt with this mess like she was washing the pots.  She smiled and chatted and batted away my embarrassed apologies and thanks.  She made this horrific situation a million times better.  She spoke of how awful she knew I felt but how each day life was going to get easier, she was kind, caring, sensitive and just amazing.

The second big blow out leak I wasn’t so lucky.  A nurse came and she tutted.  She cleaned me up but barely spoke and made me feel like I was an inconvenience to her.  When she left I cried myself to sleep.  I felt like a baby.  I couldn’t even clean myself, it was so heart achingly depressing.

The third time I got a nurse who just put a cardboard bowl of water on the table in front of me and said I needed to learn to do it alone.  I couldn’t sit up, let alone stand.  I had to clean myself up the best I could including washing shit out of the 7 inch stapled would on my stomach.

These nurses, like the woman who posted this ‘joke’ should be ashamed of themselves.  You know what? We all know that dealing with another persons shit isn’t nice, but when you become a fucking nurse then you have to suck it up buttercup! If you don’t like it, if it makes you gag and makes you want to share ‘hilarious’ memes on the internet, then you are IN THE WRONG JOB.

So today Im angry.  Im not weak and sick in a hospital bed right now, I have some energy and will stand up for myself and other people with an ostomy when I see these insensitive, vile jokes.

I just hope that people will read this and understand that what may be a silly joke to you, can devastate a person reading it.  It may seem funny and you may tell people to lighten up about it, but put yourself in the shoes of the person you are mocking.  Or imagine that person is your mum or child and see how funny it is then.

 

Sam xxxx

 

An update

I thought I’d do a quick update on yesterday’s debacle but before I do I just want to reiterate that apart from this problem with three staff members (one in particular) the other doctors, nurses and support staff at both Hallamshire and Northern General hospitals have been outstanding.

They have shown warmth, caring and have gone above and beyond in helping and caring for me.

I appreciate them very very much and will not be letting the actions of the very few mar my experience with many others.

Last night was awful. After the problems with the nurse I was left feeling alone and upset. When I needed help with my bag in the night I was told there was only that one nurse who could help me so was left with someone who seemed to dislike me quite a lot in care of my stoma which was awful.

My pain didn’t decrease at all, my sleeping tablets didn’t work and I was in agony.

The steroids have made me suffer with the insomnia again and despite the sleeping tablets I could not sleep. The pain was just unbearable – I told the nurses overnight that my pain levels were so high. They ask you for a score of 1-3 – I told them it was as high a 3 as I’d ever had.

So between the lack if sleep, the steroids, the insomnia, the stress of the evening I was not a happy bunny. I had the ‘laughing’ nurse and the evening nurse to see to me. They gave me codiene paracetamol and orimorph.

I felt really uncomfortable in their care through the night. They did nothing to make me feel any better and by 630am I was in agony. I asked for more pain relief and was told I’d had everything I could and that I’d have to wait till the dr came later in the morning.

I lay crying in pain till the next nurse came on. She took one look at me and said ‘right lets get you sorted!’ She checked my chart and immediately gave me orimorph that helped within 20 minutes!

Around 9am Timm arrived. I don’t think I’ve ever seen him so angry… He’d spent the night getting every piece of information to do with complaining about the NHS, protocols, phone numbers, etc etc and was ready to ensure I got care! My hero!!!

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Once here Timm looked through my chart and said that as I’d been telling them through the night I was at a 3 for pain – they had been putting 1s and 2s.

The day nurse also said that I had only been on half doses of all my meds and that I could have 10mls of orimorph every two hours and 2 tablets of codiene every 4 hours.

I have no idea why both nurses would not give me the pain relief that I needed and that had been prescribed to me rather than leaving me wide awake in pain all night.

So today’s care has been much much better. My nurse was lovely and kind and has helped me get back on top of my pain. She explained all my meds and was fantastic.

She got a sister to come and see me who I have explained all my concerns and complaints and is helping me move forward with them. Timm and I are also seeing the hospital manager on Monday and have our routes sorted with how to complain.

We are complaining because I need to know that this sort of thing is not acceptable.

I need to know that if a nurse acts like this to me, that she can’t get away with mistreating an old lady without a voice or a person who doesn’t have the support to shout about it.

Huge love to all the amazing comments I’ve had today and yesterday. I’m blown away by the 2000 views of my last post!!! 2000!!!

Thank you for caring and thank you for supporting me in standing up for myself and for other patients!!!

It matters. We matter. We have a voice and we will use them.

Love Sam xxxx

Poor nursing = Poor care

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I’m sorry to have to blog such a negative piece today but I need to be talking about the negatives as well as the positives. As I have said many times so far, my care experience has been amazing. The nursing and care support have been just fantastic and I am a huge supporter of the NHS and nurses. My best friend is a kick ass nurse and I think they do a very difficult job in tough circumstances.

So it pains me to write about my experience over the last day, it really does.

Yesterday I had a bad time with my bag, I had a lot of leaking and my stoma was leaking into my wound. This was making me sore, embarrassed, stressed out and upset. The nurses helped me to clean up a few times, they dealt with the accidents with kindness and helped me to maintain some dignity whilst I lay being cleaned up. It was very tough and left me feeling humiliated and weepy. But we got through it.

This morning I woke to find my bag had leaked again and as I looked at my wound I saw the whole thing was swimming in the output from my stoma (poo to me and you!) I pressed my buzzer and a nurse came over, she said she was doing her tablets round and would be over later. I left it a while and then asked again, she quite huffily said she would do it later. I explained that my skin was sore and I was freaking out about infection from the poo being inside my staples!! So could I do it myself. After an hour she came back and said ‘are you expecting me to do this?’ I said yes and she said ‘fine’ I said I could try to do it myself but wasn’t sure where to start. She then cleaned my wound and bag in silence. No comment and no eye contact. I was mortified. I felt like she was a bit disgusted and didn’t want to help me. I felt like sinking into the bed and disappearing.

From then on today I have asked a few times for support. I’ve said that my bag was leaking, I’ve said that I was nervous and didn’t know what up do. I had very briefly seen a stoma nurse the morning before who had fitted one bag but then I’d leaked so many times snc tried so many different things that I was confused.

I asked if I should try to empty the bag in the loo and the nurse said ‘yes, obviously’ – the whole day felt difficult. I was trying to ask for support but not getting it. I had no idea if I was doing it the right way or not and the nurse seemed not to care.

Other nurses I’d seen so far had been open and kind and just asked ‘how can I support you?’ ‘Would you like help with this’ etc. this nurse just looked mad. She looked and sounded like she didn’t care and that scared me into not wanting to ask any more of her.

She was quite rude and abrubt to visitors and just came across in a very uncaring manner.

This afternoon I asked for some water. I’m trying to increase my water input to help with a number of things mainly blood pressure and stoma care. I asked 3 staff for an hour and a half for water.

I asked if I could get it myself and was told no, I’m not allowed in the kitchen. I know they were busy but I was parched and being postop I really needed to keep my fluid levels up.

My stoma nurse came at 530 and was shocked to hear that I had been struggling. She had not been told that I’d leaked 6 times the day before and was distressed. She said that my output needed more fluid and I needed to drink more. I pointed out that I’d been asking for water for an hour and a half. The student nurse then took my blood pressure which was again low an said I needed to drink more.

No shit Sherlock!!!

Anyway I was looking forward to todays nurse ending her shift and hoping that the evening staff would be of more support.

So this evening towards to end of visiting I found my bag was leaking. I had to ask friends to leave and I was quite upset. I found the evening nurse and said ‘my bag is leaking, maybe I could have a shower? Could you please help me and get a towel. She got a towel an just pointed to a cubicle. I waited for her to come but she didn’t.

If I’m honest I thought she would come and help me. I just had my epidural out today and so I’m still unsteady on my feet and in a lot of pain. When she didn’t even come in, I was too embarrassed to ask her. Of course I’d rather not have a person helping me wash my fanny in the shower! But realistically I needed the help.

I felt very exposed and childlike. I couldn’t lock the door and there were blokes sat outside. The nurse was talking to another staff and kind of shrugged as I pulled at the door.

I dragged the disabled chair into the shower and managed to half sit, half stand in the shower. I struggled to remove my surgical stockings and knocked my stomach.

I sat crying in the shower, not know whether I was supposed to remove the bag or not. Not knowing if I should use soap near my stoma or not. I was in a lot of pain and wished I’d not bothered trying to get clean.

I managed to get somewhat clean and then realised if need to do my first ever bag change. Wet. Alone. In pain. And sat in a disabled shower with a door that didn’t lock. Score!!! Well done me!!!

As I shuffled back to bed a lady from the ward said ‘you need more support love, I can’t believe she didn’t help you in the shower. Can I help?’

I got into bed and then looked down an realised my bag was once again leaking A lot.

I pressed my buzzer and a support worker came, I told her my bag was leaking and i was stressed – I didn’t know what to do. She brought a bowl of water, plonked if down and said ‘is that what they do?’ I said I’d not been getting any support but that I did need help. She just shut the curtains and walked off.

I thought I’d better just give it another go. It’s tough, there’s a lot to learn and I was promised to get stoma education and that the nurses would help me every step of the way over the weekend. This just wasn’t happening

The support worker came back and said ‘you done? Ill open the curtains.’ I replied somewhat snarkily that no I wasn’t done as I had no bloody idea what I was doing but that if they wouldn’t help me that they could at least leave the curtains for privacy. ‘Suit yourself’ she shouted back.

That’s the point I texted Hannah, my awesome nurse friend. I’m a strong independent head strong woman but right now I’m a wilted, broken woman in pain. I’m someone who wants to be able to do things for herself but currently needs help. I needed to speak to Hannah as I sat crying looking at this bloody bag wondering whether my wound was I infected.

Hannah quite rightly told me I needed to speak to someone and to demand some care.

I made a last dash for the loo and when I came out a lady from the ward said ‘Sam I’m worried for you love, why aren’t they helping you? I have buzzed them, this is ridiculous!!!’

I saw the nurse who’d not helped me to the shower and it all built up and fell out!!!

‘I had the whole of my large bowel removed three days ago, I’m in agony, I’m frightened and I am not getting any support from the nurses today. This isn’t fair. I’m in a state and I need some support!’

She replied and said ‘well ask then, it’s not just me’

I looked up quite surprised And said ‘I’m struggling and I haven’t got good enough care from you or the other nurses today.’ I started crying and she said ‘well if you want something just ask!’

She was really defensive and aggressive and I couldn’t believe it! I started crying and said ‘I really hope you are never in a situation where you are in pain, frightened and need help and you’re surrounded by people who don’t care’

She shouted ‘why are you wishing pain on me?!’ I replied that I wasn’t, that I was hoping she would never struggle the way I had. She repeated that I was wishing evil on her…. *sighhhh*

Another patient said ‘The lady’s upset and saying that she hopes you won’t ever be in her situation as we’ve all seen her struggle today and no one helped her!

She was told to be quiet and not to did us other patients.

Then she walked off leaving my curtains drawn and myself crying a lot inside my bed.

I called Timm as I was getting into a right state, I couldn’t believe how things were going and just felt frightened and alone. I was crying hard to Timm and it was obvious you could hear me around the ward. I looked up and the nurse was stood outside my curtain just doing her meds round. I said ‘timm the nurse is standing here doing nothing, I’m in pain, I’m frightened and she’s just stood here.

She did not try to improve the situation, she didn’t try to make me feel better or to pass it on to a superior. She just carried on.

Eventually She said ‘what do you want me to do? You’re just complaining and I’m saying ill do whatever you want.’

I said I wanted to speak to whoever was in charge. The nurse laughed in my face.

I was desperately sad, crying and in a state and she laughed.

Finally the ward manager came over. She asked what was going on. To be honest I’m not sure what took her so long. I tried to explain how unhappy I was at the lack of care and support given all day. I mentioned the shower and the Nurse stepped back I shouting ‘you only asked me for a towel, how’d I meant to know you wanted help?!’ I’d think it was common sense as a nurse to at least offer wouldn’t you?

I said she’d not offered any help and she laughed. Again. I almost lost my head. I can’t believe that when being confronted by a desperately unhappy patient who is three days out of major surgery that anyone would LAUGH I’m their face.

Unforgivable in my opinion.

So I spoke to the ward manager and hopefully pulled in my crazy. I know I wasn’t at my most rational but I’m in pain, I’m distressed and I feel let down so in the circumstances I think I did ok!!!

She has apologised and said that communication needs to be clearer. I think she is suggesting that I need to clearly say the words ‘I need you to get me a care kit and clean up my waste as well as bathing my wound’ – I tend to think that other nurses don’t need it spelling out so clear and asking for help as my bag is leaking should suffice. But perhaps these are particular nurses who suffer from a lack of empathy and common sense….

All I can do is move forward from here, ill be complaining about certain members of staff and making sure the hospital know what has happened.

It’s not just me, other patients have commented that we have had the most awful day of staff being rude, unhelpful and not caring.

I have had another leak tonight and pressed the buzzer. The nurse came over and I told her my bag was leaking into my wound. I asked if there was anyone else who could help me. She said no. So I have had to let her clean me.

I just want you to imagine how it feels for a grown woman to ask another person to help clean faeces off them. Now think how it feels knowing that you’d asked before and that person had already not wanted to help. Now imagine that being the only person who is available to help you.

Feel good?

Nah, me neither.

Well let’s get this blog post out into the ether, eh?! It’s not to slag off nurses or to be nasty. It’s about real experiences of patients of the NHS.

Im laid here raw, exposed and totally frail to these things happening to me and experiences like today have made the whole thing so so much harder.

I really hope tomorrow will be a more positive day.

Thank you for reading

Sam xxxx