My family are already stretched to breaking point. To give you some idea, this is a typical day for my Mum.
-Get my 6 year old ready for school
-Come back to my house, get my 2 year old dressed and fed ready to drive him the 15 miles back to her house and my disabled dad.
-She gets my Dad up, washes and dresses him, then gets him and my baby back in the car and drives the 15 miles back to my house again.
-Back at my house, she tidies up and does some housework before picking Giac up from school.
-She helps with his homework, gets a meal ready for when my husband gets in from work and they all eat together.
-Finally, she drives my Dad home, gets him ready for bed and then drives the 15 miles back to my house again to stay the night so that she'll be there to start the whole exhausting process all over again.
How can she possibly add in looking after me too? Bringing me drinks and meals upstairs, making sure I've got all my prescriptions and coordinating with doctors?
My husband simply has to work or we won't be able to pay the rent. He comes straight in from work, eats some dinner then baths the boys, reads them stories and gets them settled down in bed. His day usually starts at about 6.30am and doesn't finish til about 9pm.
Despite all of this, there doesn't appear to be anything my local authority can do to help. I'm not over 65 and I'm married, so I don't qualify for anything.
My GP won't help. The surgery say they can't do home visits or even ask the practise nurse to keep an eye on me. I've tried everything not to be sent home, but nonetheless, they're discharging me today.
**********************
Yesterday, the relationship between me and the nursing staff broke down completely. It's probably the most distressing thing that a patient can experience and it makes it even harder for me to stay.
I no longer have any idea if I really am difficult, aggressive and rude, so I'll just write about yesterday as impartially as I can and let you decide.
The night before last, I was given the wrong steroids. The ones they gave me were enteric coated - a special coating that is digested more slowly, ensuring the steroids are only absorbed when they reach the bowel and are therefore more effective. Unfortunately, in bowel disease, they often just don't get absorbed at all and have no effect. Our bowels are just too inefficient.
No harm, I mentioned it to the sister at the 9am drug round and asked if they could get me some normal ones.
I feel rubbish if I don't take them - tingly, weak and incredibly tired. I waited in bed until they could get me the others.
At about 11am, I went to go to the toilet and found I was sitting in a pool of blood. My period seemed to have started with a vengeance, soaking through my pyjamas and sheet. I got up to go to the toilet, but blood started pouring out of me, covering the toilet floor, even flicking all over the wall and sink as I tried to clean myself up. I told a nurse and she came and changed my bed.
Shortly after lunch, a staff nurse came to ask what exactly it was I needed in the way of home care. I started to explain how stretched my Mum was and how I didn't think she could bring me cups of tea and meals on top of anything else. The nurse's face looked incredulous, "Why on earth does she need to bring you cups of tea? You're perfectly mobile?" She was red in the face and obviously disgusted. I was thrown, wondering if she thought I was being discharged because I was better, rather than just to wait for my surgical date. She'd seemed nice though, so I explained as clearly as I could how unwell I still was and the reasons why we needed a little help.
When I'd finished, I could see she was still furious, so I asked if I'd explained things well. Her answer seemed odd. "I've certainly heard what you have to say" and she walked away.
I was upset, confused, not sure why she was so hostile, so I asked a friendly Health Care Assistant for a shoulder to cry on. I started to tell her what had happened, but she walked away half way through and never came back, leaving me crying in my curtained off cubicle.
At about 1.30pm, I got up to do something and blood started to pour out of me again. I was literally clutching wadges of paper towels to myself and discarding them, soaked through after just a few moments. I still hadn't had my steroids, so the combination was making me feel very unwell. I called another HCA who had changed my bed and showed her the tissues. She said she'd tell the nurse.
At 3.30, I still hadn't had my steroids and no-one had been to see me about the bleeding. I suppose I'd had 4 or 5 episodes of the blood simply gushing out of me every time I tried to get out of bed and I could only lie flat to make it stop. I asked the HCA if anyone was going to come and see me about it, but she told me the staff nurse "didn't think it was anything important."
At that point, I lost my temper. I called my Mother-in-Law at home and spluttered out the whole sorry tale. I suppose everyone else could hear me but I just wanted to go home. She'd been a nurse for over 20 years, and simply couldn't believe what I was telling her. I ranted on for a few minutes, gulping with tears and frustration. As I put the phone down, the sister from the morning drug round walked past my bed. I asked her if she'd managed to get my normal steroids, but she started to tell me off. She said I'd already had them and the doctor wouldn't prescribe any more. She said I was rude and demanding and asked why I was telling everyone I was getting bad care. I didn't have a clue what she meant, but she was shouting at me, telling me I didn't need any more steroids and that I was lying about the care. "Why are you telling everyone you're getting bad care, you're not, we're caring for you very well."
At that point, I lost my temper too. I told her it was 4pm and I'd been waiting for my steroids since 9 that morning. I'd been pouring blood for 5 hours, but they'd refused to come and see me about it, and I'd been waiting for a urine test for three days. "What about that do think is good care?" I asked her. She walked away and that was that. From then on, no-one would answer my buzzer at all. The staff nurse ignored me every time she walked past my bed. I bled again a couple of hours later, but the nurse again, refused to come.
Soon after, one my medical doctors came and asked me what was wrong. Her whole demeanour had changed. She told me I got upset too often, (PTSD apparently forgotten) that the nurses had said I was demanding and that I insisted they always did things immediately, that I was rude and always complaining about bad care. She said I should have mentioned the steroids at the doctors round that morning, but I hadn't known that. She said I wasn't sick enough to get help at home and that everyone had done as much as they could for me.
A little later, the sister and staff nurse were back in my bay, doing some kind of IV procedure on a patient. I glanced up from my computer, trying to think of a word. "We're being watched sister", sneered the staff nurse looking at me. The sister muttered something and they both laughed.
I asked calmly if the staff nurse was talking about me. She just stared back at me, red in the face. "Can we not do this?" I replied "Can we not decide I'm just a horrible person and make everything I do wrong? Only it feels a bit like schoolgirl bullying now." No-one said any more.
So that's how I stayed. I never did get my steroids, and no-one checked the bleeding. I was weak and shaky and faint, forced to lie flat until the shift changed at 7.30pm.
Today, I'll go home. Pouring blood, with a partially obstructed bowel, Dave will have to drive me home from Cambridge and somehow, we will all have to manage until the 22nd. I've no idea what caused the sudden, frosty attitude. No-one would tell me who'd said what or why they were so upset. I'd had a perfectly normal morning, laughing and joking with staff, I hadn't demanded anything that I recall, my injections had been on time and I couldn't think of anything I'd said that could possibly have been offensive.
My only guess is that someone had read my blog and hadn't liked what they'd seen, or that someone had been making up stories to cover their own cock-ups. I don't suppose I'll ever know now, but once you're considered "difficult" there's no going back. I couldn't stay now, even if I wanted to, as everything I ask for will be "demanding" and every symptom "attention seeking."
I have absolutely no idea who I am today. Am I Sue, brave, kind and clever? Or am I Susan, rude, aggressive and demanding? I truly cannot answer. I have lost myself, I am unsure and embarrassed. Have I caused all these problems? Have I over-reacted to minor slips? Or has the care been sloppy, has the system failed? I am so isolated, so far from home, so removed from those that know me, so disorientated, I can no longer judge.
The doctors all love me again this morning. I am smiling, agreeing with everything, cooperating about going home, saying we'll manage - all to get out and away from this nightmare. Apparently, if I "panic" I can call any time.
That's OK then.
Update : A new drug that the hospital had put me on just two or three days before carries the warning
"For this reason you should tell your doctor immediately if you experience any of the following symptoms while taking this medicine: unexplained bruising or bleeding........"
But that's OK too, the staff nurse looking after me didn't think the bleeding was important enough to come and talk to me about.
Just out of interest, here's what they prescribed me as an anti-emetic:
http://www.netdoctor.co.uk/medicines/100001886.html
Coincidentally good at treating "anxiety" too isn't it?
Seems I'm either dying or psychotic. I wonder which it is?
Update : A new drug that the hospital had put me on just two or three days before carries the warning
"For this reason you should tell your doctor immediately if you experience any of the following symptoms while taking this medicine: unexplained bruising or bleeding........"
But that's OK too, the staff nurse looking after me didn't think the bleeding was important enough to come and talk to me about.
Just out of interest, here's what they prescribed me as an anti-emetic:
http://www.netdoctor.co.uk/medicines/100001886.html
Coincidentally good at treating "anxiety" too isn't it?
Seems I'm either dying or psychotic. I wonder which it is?
Sue, don't let them stop you. I seems quite likely that your blog is receiving attention, and whilst those of us here see that as a positive, perhaps it is also to be expected that some of it will come back to you through those who do not understand or support your aims in what you are doing. When you raise your profile you will always find some people who don't get what you are trying to achieve trying to knock you. Take that as indication that you are doing the right thing, that people have noticed, and are taking you seriously. I am looking forwards to your next blog posts and Guardian articles, I don't think that we have seen enough of your writing yet.
ReplyDeleteYou always come across as very likeable in your brilliant writing. You use words accurately and precisely. It never ceases to impress me just how continuously and consistently you demonstrate patience and understanding of the position that others are in.
Despite the (ironic) blog title I certainly don't see you as a dole scrounger. You are deserving of care and financial support and I would encourage you to speak with an advocate who can help you to access those services to which you should be entitled.
That said, you may well be better off at home with support from your family through the next few days. I am sorry about my lack of understanding of your situation, but I have never understood why you have to go in for weeks before they even give you a date for the op. I do hope that the op goes smoothly and leads to a better quality of life for you and your family in the new year.
Sue, oh Sue .... this is just awful!!!!! Hang on to yourself ... know what you know because we all know that you are Sue not Susan!
ReplyDeleteThis punitive behaviour from people on whose care you depend is vile, vile, vile!
They are discounting at a very high level, and you have described before the pressure to walk on eggshells in order to get your profound needs met, to get them to look after you without letting them know, that you know where they've got it wrong.
Please send your mother my empathy and admiration. She deserves all the help and care that society could give her. So does Dave ... it is all too much.
*hugs* Bloody hell, what a nightmare. Sounds like the hospital have found out about the blog to me. Hope you're on your way home by now anyway.
ReplyDeleteFirstly, whereabouts in the country do you live? I'm wondering if we can find some voluntary support for you temporarily. Not for things like personal or child care, but even if it's just someone who can pop in and make you lunch so your mum gets a break. It's worth a try anyway!
Secondly. We need to get those dla forms done asap. £400 a month will remove enormous pressure cos you can buy in some help. As you're not getting any benefits currently there's nothing to lose so less stress by doing the application. Not that it'll be a barrel of laughts or anything but if you don't get it you don't lose. Having said that, yours should be an icnredibly straightforweard application & I'm appalled you aren't already getting it.
So, can you please send off for the forms? While we're waiting for them to get to you we can start work on the questins as they're available online anyway. Its fine to have everything typed, printed & stapled to the form.
Also blogging we provide alot of the info needed for dla forms without realising we're doing it so alot will already be written.
Anyway, I'll shut up and wish you a safe journey home. Let us know how you're doing when you can. BG Xx
Thanks BG. It's incredibly helpful of you to focus on practical things. I really do need some support to get on with it.
ReplyDeleteI've already sent for the forms, they're waiting at home.
I applied once before, but bizarrely, got he mobility component when I thought if anything, i'd only get the care component.
I live in West Sussex - Worthing, but don't make yourself exhausted helping me!! We'll do what we can each day, but there's no rush. I think the DWP said it's backdated from the day you get the forms anyway.
My specialist nurse, said they would write a new letter, detailing how complicated my Crohn's is, the problems I have with meds and my allergies. I expect it will help with the claim.
You're all wonderful xxxxx
Now a more reasoned response.
ReplyDeleteThis is known in the trade as a psychological 'game' - both sides experience the present as if it were some past event. My guess is that there will be an individual nurse who has been triggered into a transferential response to you such that she is making you into a 'Susan'. It is likely that she will have been one of those girls at school who was the centre of the 'popular' people. I always think of them as 'spider' girls. They control the group by playing nice/nasty cop.... someone is always a victim to make sure that the others toe the line if they want to stay in the group. I would hazard a guess that this is the situation on the ward. I have certainly heard all this from mental health nurses.
You will know what it reminds you of... though I could suggest many of your experiences with the medical profession that you've described here. For you I imagine this feels more like life and death, but for them it is 'group think' in response to a dominant individual and many of the nurses involved will already be wondering what actually happened and will be feeling rather bewildered.
The reality is appalling and dangerous bullying but I doubt if any of them are yet seeing it as such.
The good thing is that you will be safe at home ... but I wish I could lighten the load... and by the time you return to hospital this will almost certainly be ephemera and hardly remembered by the staff involved. The important thing for you, is to get grounded, see the reality of the staff dynamics and have faith that this is them not you!
Remember other people's behaviour is much more likely to be to do with their stuff than what you are like. We all see the world through the prism of our own understanding and experience.
Big hug Syzygy Sue xxx
Hi Sue,
ReplyDeleteThe way DLA awards are assigned is a mystery...but they do have guidance they have to follow and they key to a successful application is making the answers fit within those criteria. I don't mean lying or exaggerating but focusing on the things they want to know aobut which aren't necc the same we'd think are important.
IMO you should be getting high rates of care and mobility. Mobility seems easier to communicate on a dla form which is perhaps why it's easier to get...also hrc is worth more money.
Glad you've got the form/supporting evidence, there are a few others on our twitter list who work as advocates or advisors for agencies who can also help with the form. And, from my experienc eI suspect writing very publicly has an influence on the decision, even if it's only as an easy way for a DM to see day to day life in diary form.
Can I have your permission to ask around on twitter/facebook etc for ppl in your area who can help practically? It'd obviously be up to you who you felt comfortable with but social networking is a great way to get some offers of support. The main thing is that you, Dave & your mum know you're not alone in all this. Love & hugs BG Xx
Hi Sue...It seems to me that your situation endorses my view that the NHS should be privatised and broken up. If these places had to compete for business, and the NHS is ideally placed for this, you wouldn't find the patronising and dismissive attitude that you have to endure. If customer satisfaction determined their economic fate, rather than statistical box ticking on behalf of vote hungry politicians, then the service would be far more client oriented....I avoid dealing with state controlled entities wherever possible, and find that the private alternatives are always much the better option.
ReplyDeleteI appreciate of course that private services are not available to everyone, but it seems to me that with their vast bureaucratic infrastructures these monolithic organisations are ripe for the axe, to be replaced with, competitive, lean and fit, client focused, privately run businesses. The savings would be enormous and would be ploughed back into improving delivery. Obviously I understand that there would be challenges in ensuring that a full range of services were available, nevertheless, as an option, privatisation would seem the obvious alternative to the shambles that is the NHS.
BG - Feel free, any help gratefully received. I'm touched that you want to help.
ReplyDeleteSue - I love your comments. I can't tell you how helpful I find it to have a framework to put all of this into. The good thing is it doesn't seem to have filtered through to other shifts, today's nurses are nice and friendly. Sometimes, situations like yesterday get handed over at shift change, and you end up with the entire staff against you.
This has all reminded me of the one other time this happened, and I think I'll post on it soon. I've always thought, that if something like this happens, there ought to be a patient advocate or something to repair the damage. The PALS (complaint) system doesn't really provide for this and the patient currently has literally nowhere to turn.
As I KEEP on saying, I have a series of posts planned for my suggestions on how things could be improved. I'd forgotten about this though, and will add it in.
You're both rocks. xxxx
What is happening to you is the reason why people are afraid to speak out. I haven't read anything that you have said or done that I would deem unreasonable. For some reason staff take it personally when complaints are made and it is seen as OK to just refuse to care for people when this happens. A rule that was put in place to protect staff from being attacked by patients but has, like most things in the NHS, been taken too far. I am tired of hearing how bad staff have it and how patients need to be sympathetic to their plight. Maybe if they didn't treat your care like how a parent bribes a child with sweets to behave more people would sympathise. I am sure when I when little I saw a copy of the Hippocratic oath on my doctors wall, does this not exist any more?
ReplyDeletePlease don't lose heart, what you are doing is helping many people out there, me included. I hope that you find something that will ease yours and your families burden xx
Sue,
ReplyDeleteI can say that even if they had read your blog you were always very fair ot the nurses. ou never mentioned them by name. You always brought balance to their side. On occasion, you covered up for their errors. Not one Nurse has ever been personally discredited on your blog. For my money, that makes you morally upstanding and beyond any reproach from the nursing staff. The fact that the doctors seem to be much nicer, might indicate something about the levels of stress the nurses are under. But over here in Belfast so far away from it all it is impossible for me to tell.
The most important thing has to be your big day 22/12. With the luck of God you will be definitely home for Chrsitmas. You have spoken before, how much it improves your health after an operation. Try to treat that day as sugarcandy mountain. Children are resilient and understanding, they will be fine since it sounds like they have a lot of wonderful support around for them.
My prayers go to Dave, who must feel so helpless wnating to save the love of his life, yet feeling powerless to do anything.
I wish you both well.
Good lord....
ReplyDeleteI can't say I didn't have the same experience recently in hospital however, and got the same brushoff when I tried to get help. They only help the elderly, apparently; the rest of us are just drama-queens and I was appalled.
It does sound as if someone found your blog, and as a result they've decided to be nasty. When you have the strength, file a complaint - I'm doing the same myself right now.
I can heartily say what you're being told about "being married and therefore don't need help" is also totally wrong, as well as insisting that your elderly mother who is already a carer needs to continue care. This is also a fight I'm having to got through at the moment and I would point you toward Disabled Parents Network - they have some very useful booklets which lay out the law of a disabled parent and what you are being told is a complete lie.
There's so much on your plate, and I know it is overwhelming and one needs to pick one's battles, but try and get your DLA done (I'm still going through mine) and get help from Citizens Advice Bureau. The DPN can help you find advocates to help press complaints against Social Services and the hospital if need be to make sure no one goes through what you have done.
As far as the point re: privatising hospitals - no, no, and a thousand times no. I am from the US and I certainly do not want to go the route of being unable to afford even simple antibiotics or a vital surgery. Making care accessible only to people who have money is NOT the answer either.
Good luck and I hope you're able to get a bit more help. Please do get in touch with DPN: I've found their help amazing.
http://www.disabledparentsnetwork.org.uk/
Sounds to me that someone had read your blog, and is frightening other staff about it, so they are fearful. Health care workers are not saints, or angeks. The vast majority are caring, very hardworking, professionals. In many cases hey are understaffed and underpaid.
ReplyDeleteClearly something went wrong re the drugs. Confusion over drugsdoes seem to happen far too frequently, and is alarming.
Sue, please be reassured that your blog describes the psotives and negatives of the care you are receiving and is no way libellous of any individuals.
Do not become disheartened. Do believe that this will help.
Do not become dispirited if some people are misinterpreting you blog, they may not have read it.
I would like to think that communication from your surgeon who obviosulsy is aware of the seriousness at discomfort and pain caused by your condition would filter information to all staff aring for you at it is most concerning that this has never happened.
It is apalling and beond belief that there does seem to be some bullying of patients, and this MUST be formally put in as a complaint; if nothing then happens you can follow it up.
Meanwhile, try to relax at home, stress over this is not going to help, though O know how difficult that may be.
You are a good person, believe it.
Regarding putting our precious national health service, or any other public service in the hands of those who seek to make money over care of people - absolutely not, we do not want to go back to the dark ages. let's put our health service right, and try and understand why it is not always perfect, why it is sometimes failing us. Thank goodness it has not been privatised and that you can have our operation.
Take Care... It will be all right x
Sorry for all the typos..
ReplyDelete:-(
sue you should be getting high rate DLA for personal care and low for mobility as you can walk. Personally i would award you medium care for mobility as when walking you are probably in a lot discomfort
ReplyDeleteYour a good person and that staff member should be sacked had you been having treatment at st marks this type of staff is not employed there as far as i can see over the years of being a patient of there's
Blog or no blog it's none of the hospitals business your just writing a day to day blog on your life and treatment of which is a fascinating insight and should be read by everyone because one day everyone in the country will be affected throughout there life in one way of another by poor health
You should do like i do and get your mp to help you believe me it does make a difference with the right mp
As i said in a previous post of mine DWP in my case do monitor what i post as does my mp but to be frank i don't care anymore
I like you are in a bad situation you with your bad health worse then mine and me with bad health health constantly being watched by the DWP
I like to think there was an end for us both in which we would have piece of mind but i don't even think that's possible so the nightmare continues
It's a pity tho that out of all who do read your blog no one has come forward to help you out in a legal way so you were getting all of your entitlement's without struggling all the time
take care as always :)
Thank you all for your thoughtful and supportive posts.
ReplyDeleteI can't tell you the difference it makes to be told it's not just me.
xxxxx
Hi Sue, the authority managing your hospital must know by now that you have a widely read, and much respected forum. Why hasn't anyone approached you, to re-assure you that your concerns are being addressed ? I find the same reluctance to confront problems, in failing companies, the managers are frightened to get real on issues that threaten their comfort zone. It's a sort of fear of failure, a paranoia, facing up to reality is sometimes very difficult for insecure people, they hate potential confrontation because it reveals their inadequacies, shows their culpability, and therefore, opens them up to criticism.
ReplyDeleteDon't worry Sue, it's not you, when you work it through, all too typically, it's them ! <3
Ken - I think that's your best post ever. beautifully eloquent.
ReplyDeleteSue....Thanks for that, reading your posts must have raised my game, on the shoulders of giants etc. :-)
ReplyDeleteThis comment has been removed by the author.
ReplyDeleteKen, I would imagine it is just a matter of time before someone from the hospital approaches Sue, or a politician on sue's behalf contacts the hospital.
ReplyDeletehas to come out sometime.
Pam
I very much sincerely hope your right Pam :)
ReplyDeleteI am always very defensive of Nurses. The Nurse and Sister caring for you sound like bitches.
ReplyDeleteYou don't sound like a difficult patient at all. I have had to deal with many truly aggressive patients during my years as a Nurse and have never sorted to childish bullying behaviour.
Those two should come and work on my male medical ward and deal with 6 foot 4 drunken confused blokes who sneak up behind you and drag you into the supply room hand over your mouth and try and shove their fist up your fanjo. Management asked the Nurse what she did to deserve it. No wonder we Nurses get callous. What I am describing is pretty usual.
I hope that those two got some male medical detoxing admissions after you were discharged. Then they can see what a truly tough patient is instead of giving you a hard time.
I can understand the meds being late and screwed up though. My next post is going to touch on that quite a bit.
By the way I think I would love to have you as a patient.
Just to add you sound articulate, thoughful, open minded and cool. And you are female so no attempts at raping/killing the staff. You sound like the perfect patient to me!!
ReplyDeleteActually Sue, I agree with your nurse - you DO sound difficult, aggressive and rude. Worse, you sound ungrateful for the help you're given. It's no-one's fault you're a bit unwell.
ReplyDeleteDeal with it.
This is nice Gordy. You must be going through my blog and giving it a good read to have found this one. It's not in the most popular list, it was a long time ago, I'm flattered
ReplyDeleteBy the way Gordy, which bit in particular did you find aggressive? Specifically?
ReplyDelete
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