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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

I had my pre op!

This week I had my pre op assessment for my upcoming surgery. Pre ops are for when you’re having a general anaesthetic. You have a hospital appointment with a nurse to check if you’re fit enough for surgery.

They check your height, weight and blood pressure, take blood. Then they either take swabs to check for MRSA if you have your surgery date soon or send you home with a swab kit for you to do the week before surgery. It is an assessment to check whether you’re fit to have a general anaesthetic.

Its also an opportunity to discuss the surgery and any concerns you might have. As I’ve mentioned before my biggest fear at the minute is that I won’t receive proper pain relief after the surgery as this has happened to me twice before in this hospital.

After a big op like the one I’m having, I tend to have an epidural in place that delivers pain relief for the first few days after surgery. When this is taken down it can be a big shock to the system and good regular pain relief is a must.

My worries

Unfortunately twice now I have been left in agony due to the ward nurses not giving me appropriate drugs on time. Now I’m terrified it will happen again. So much so that I almost don’t want to have the surgery at all.

But I got time to speak to the nurse this week and share my fears. She told me that it was unacceptable that this had happened and that if it happened again, to immediately ask to see the matron who would sort it out and be majorly pissed off at nurses not doing their jobs.

As I’ve said so many times, I have huge respect for nurses and the vast majority are bloody wonderful! But there are some shockers.

Mind/Body connection

In a book I read this week (healing from the inside out, Nauman Naeem) it talks about how ‘good patients’ as in those who don’t speak up, press the buzzer, complain when needed are at much higher risk of complications and that rather than being a patient we should be a respant – a responsible participant.

The nurse also has arranged for the accute pain team to see me ASAP after surgery and has made notes for the anaesthetist to let them know how nervous I am and my past experience. She said they will be able to write me up for decent pain relief before they even consider taking the epidural down.

She has reiterated just how complex this surgery is going to be, around 7 hours in theatre and a high risk of complications. They have booked me into the post operative surgery unit (POSU) for straight after where they’ll keep a closer eye on me and if I need to be transferred to the High Dependency Unit they can do that quicker and more easily.

Feeling scared

I will need to be in hospital for at least 10 days and recovery will be 2-3 months.

They will be repairing the huge parastomal hernia, it’s a massive opening about 15cm and the incisional hernia on the other side and moving my stoma again. I have adhesions everywhere and so these may cause problems.

Its fair to say that I’m terrified.

Im trying very hard to stay positive, I have a new mantra (again from reading the book above) that I tell myself every day to fight against the feelings that everything is so tough right now and I hope that having more open and positive thoughts will aid in my healing.

“I am open and welcoming to healing, strength, love, joy and happiness”

✌🏽& ❤️

Sam xx

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.

dick3

 

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.

hospital drip stand IBD disability

 

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.

ibd hospital jpouch canula medications

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.

sam cleasby ulcerative colitis ibd ileostomy surgery

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

My hospital complaint – an update

Im fuming.  So super angry.

You remember the problems I had with one nurse in particular whilst in hospital? You can read about it here and here.

Well the ward manager just called me to let me know he had spoken to the staff concerned and that he hoped I would feel the matter was resolved.

Not so much, it turns out.

The nurse who laughed at me when I lay crying, who offered no help in changing my ileostomy bag or in showering, who wrote on my chart that I wasn’t in as much pain as I was telling her I was and who withheld pain relief, that one… Yeah, her response is that I only ever asked her for a towel so how should she know I needed help in the shower? No remorse, no realisation that she could have done more – its my fault for not asking.

He says that he told her as a SENIOR staff nurse that she should have been aware that a patient who has had major surgery three days prior should get more support and that she could have done more.

He says he showed her my chart and questioned why she didn’t give me more pain relief.  I asked her response he said “Well, nothing really”

He says that she “point blank” denies that she laughed at me.

What. The. Actual. Fuck??

I asked if he was ok with this? That his senior staff nurse had lied on a chart and withheld pain relief.  (I didn’t sleep at all that night, I sat up crying in pain, asking for pain relief again and again.  I was told I couldn’t have anything else till the dr prescribed it the next day.  When asked how much pain I was in 0 = none through to 3 = extreme, I was telling her 3, more than 3!!! Agony!!!! The next morning Timm came in and checked my chart, she had been writing 1s and 2s.  In the morning when they changed nurses, the new nurse came in to find me crying in pain, she checked my chart and immediately gave me a higher dose of Oramorph and said the doctors had prescribed me a higher dose than Id been given all night and that I could have been having it every two hours)

He says that the nurse has worked there for years and he knows her personally and he has never had another complaint against her so it is her word against mine.  He went on to say that *some* patients when they are on a lot of pain relief can be “confused” – he went on to say that of couuuuurse he wasn’t suggesting that *I* was confused but that it does happen.  I told him that two other patients on my ward were so appalled by what they heard and saw from this nurse that they gave me their names and phone numbers and said should I complain that they wanted to be able to say what they witnessed.  That one patient told me she was trying to reach her mobile phone so that she could film the nurse laughing at me whilst I lay crying and sobbing.  That I had been on the phone with my husband as she was laughing at me… That yes, I may have been tired, stressed, in pain and on painkillers but I was not making this up and I had witnesses.

He says that he has spoken to her and none of it will happen again, so do I feel it is resolved?

Is he crack-a-lacking me??

No, I told him, no.  This isn’t resolved as the nurse is showing no remorse and is denying she did anything wrong so how can I believe she won’t do it again?  If she thinks she did nothing wrong then who else is she doing it to? I said if that is as far as he can go then I will be making a formal compliant.  He asked if I would speak to the matron first.  I said I wanted to make a formal complaint as I need to know that she won’t treat others like this.

He said that sometimes complaints are valid and sometimes they aren’t and then went on to tell me that a patient had threatened to complain about him today but it was only because that person had “learning difficulties” – WHAT??? Surely these things should be confidential and he shouldn’t be telling me about other patients?!

So there’s my update, Im sorry if it is badly written but Im so ANGRY at them.  That they think it can all be brushed under the carpet.

I WILL be making a formal complaint and will take this forward as far as I have to.  I need to do it for peace of mind that next time it isn’t my mum, your nannan or Joe Bloggs’ uncle… That it’s not a frightened old lady or a young person who don’t have my voice.

Thank you for reading

 

Love Sam xx