At the end of our tether trying trying to get the NHS to do ANYTHING!

[dogpole]

Hello everyone here, this is my first post on here and I just want to say hello before I start to rant!

 

I am so wound up and frustrated by the treatment- or lack of- by the NHS. Not just one aspect person, or service, but the whole thing.From GPs, of which we have seen many, to the casualty departments,again we have been in many, to every specialist and other -ist we have had the misfortune to come accross.

 

Every single one of them has and is letting us down (and I expect everyone else too). My health problems have not changed in over 12 years, only the department and the "diagnosis" changes as I've been passed from pillar to post and hey still are not being treated..but although my health problems worry the hell out of me..it is my wife's health I am concerned about more than my own- and watching our lives tick away while waiting months for another referal to see someone who could'nt care less..theyr'e getting paid whether we live or die. so whats there for them to worry about?

 

So, what is the "form" on this forum? Do I list off every injustice and waste of time that has gone on over the past 12 years? And can anything be done? I'd love the chance to tell the story,just because I am so frustrated- to the point of tears on most days by the lack of help we have been getting, and the lack of having anyone in the NHS who will do anything or even listen. We cannot even think of going to private healthcare- we struggle to find the taxi fare to the latest waste of time appointment.

 

I really hope that through this forum I can find out exactly what I can do to get some kind of help for my wife.

[poppynurse]

Bless you, it sounds as though you have had a really tough time of it.

 

If you need to 'get it out', tell us your story and we may be able to come up with ideas/suggestions. There are quite a few NHS folk about on this forum and whilst we cannot give specific clinical advice we can try and point you in the right direction, and we care

[NHSworker]

Do I list off every injustice and waste of time that has gone on over the past 12 years?

 

If you want any advice, then yes we will need to hear the story ...

[dogpole]

Sorry its taken so long to get back and post this, There have been so many developments and I have been so busy looking after my wife and family, and trying to do too many things at once! I thought things were improving as she is in hospital now and has been for a while.

 

Right, I'll try to keep it brief and start at the begining.

 

A long time before I met my wife, when she was about 14 she suddenly stopped having periods and started putting on weight- she went to her GP, who she had had since she was about 3, he told her she “was fat-go and lose weight".

 

So she tried, she tried every diet they gave her- she just put on more weight, had no periods and started to develop hair where a girl shouldn't get it etc..

 

Her Gp said it was because she was " Fat- go and lose weight"...So she carried on trying, and all the exercises and diets did nothing to help.

 

At this point her GP said she couldn't be following the diets etc..so it was her own fault.."if you won't do as we tell you we cannot help you"- she was, but he wasn't listening.

 

She carried on getting even worse, with agonising stomach pains on top of the weight gain, her GP said it was irritable bowel caused by her diet (after all, she was "overweight" and must have been eating the wrong things in his opinion).

 

This carried on, nothing changed, he just carried on telling her she was overweight and there was nothing he could do unless she lost weight- which she had desperately tried to do. Then a new GP joined the surgery, he took one look at her symptoms and ordered some tests at the local hospital.

 

This is about where I joined the story.

 

After various blood tests they finally did an ultrasound. The problem was they lost it for a few months. It had somehow made it into the wrong file. But they where sure there was nothing wrong (As after all - “ the results of the scan would have been brought to their attention immediately if they had found anything”) except she was overweight (and until she "admitted she wasn't really eating hardly anything there was nothing they could do")

 

Eventually, when they where about to do another scan they found the results in completely the wrong folder, The results where marked for urgent attention of the consultant and showed she had PCOS, and one of the worst cases they had seen with a very large number of cysts on each ovary ("if it had been diagnosed sooner we could have done something to prevent it getting this bad – why didn’t you go to your GP?"- a wonderful bit of advice there eh?).

 

By this time, she was in agony a lot of the time, the joints in her legs also so bad that walking was painful, she couldn't work anymore.

 

This is what the specialists had to offer- One prescribed metformin and told her to lose weight. When we said "how? Every diet you give her does nothing, she exercises as much as she can… She hardly eats, and can hardly walk, what do you recommend?"...he said “buy a treadmill, and go on a diet” -Ever get the feeling someones not listening?

 

The second told her she was "like a tree, and he had to treat the branches not the roots and medication was not the answer" (I'm NOT joking either) then prescribed her "Dianet" for the hair growth (one of the "branches"....). He wouldn’t tell us what it was, what kind of medication it was or what it did – he had the seemed to have the attitude that such things were ‘not for us mere mortals to know”.

 

He was such a pompous *** and so full of himself that we went and found out before she took it, or his advice..Guess what? It’s a birth control pill- First of all,does "catholic" on her notes mean anything to anyone????! He wrote to her GP saying she had refused treatment because she refused to take the tablet…

 

By the time the third specialist came along, she was suffering from severe depression on top of everything else, and was suicidal and had sat in the bath in tears with a razor blade. She told the specialist- his reply? "I don’t want to know if you’re depressed, I don’t care if you feel like harming yourself… you’re too young to be depressed- dont be so stupid,get some exercise instead" And that is pretty much word for word.

 

We explained she could hardly walk because of her knees- he actually looked over his desk and, without even getting up or examining her, shrugged his shoulders and said "looks alright to me". We walked out, amazingly I didn't swear at him....She told her Practice nurse about the depression and the specialists behaviour (the GP wasn’t interested either) and she got her a referal for counselling, which never turned up despite over a year of waiting..

 

Specialist number four: This was going pretty well, he said stop taking the metformin as it if it hadn't done anything by now it wouldn't do anything at all- he came up with various options- it all looked very hopeful, it was taking a very long time between appointments but it was better to see someone who seemed to care rather than seeing an idiot every week. Then we heard nothing for a very long time. It turned out they had made appointments for my wife, but the letter had mysteriously not got to us, so she had "refused treatment" again and was thrown off the specialist’s list- back to square one, back on the waiting list for referal.

 

This is just a brief list of the ridiculous conversations and encounters with various doctors we have had. It would take days to list every single idiot we have met.

 

 

So we moved house- new GP, new hospital.

 

This one was worse, the specialist was more sympathetic- well meaning, but useless.

 

I was told to provide a semen sample as part of the treatment..I did and brought it back to the hospital with the leter…The person at the window just looked at it, looked at me and said –“what do you want me to do with this?”. It turned out these samples where no longer taken at this hospital. Instead I should have taken it to one across town despite what the specialist had said. And I would have, had the person at the window said that..instead she dropped it in a box somewhere and said "next".

 

I later found out (six months later) the box was the bin, and the test was never done.

 

Her appointments were four to six months apart so by the time we went back to get the results of the last test ,which had been lost this time, so much time had been wasted and another set of tests had to be done . An internal ultra sound was done, and it showed an irregularity which would have to be discussed with the specialist. When the appointment came around my wife was too ill to get to hospital, we informed the hospital. Guess what? Yup- a letter was received by the GP saying we had not turned up for an appointment and so had been thrown off…We gave up, we became resigned to the fact the NHS wasn't going to do a thing to help.

 

Then my wifes health started to get a lot worse in the last year or so; This is where it has really got bad.

 

The stomach pains where getting excrutiating, and the GP said it was probably acid reflux- and gave her some tablets..nothing changed and it got so bad I had to get her to casualty at about 3am one morning. They told her to "take two paracetamol…. and lose weight" and basically shoved us out the door. Ever had to watch someone you love gripping onto a table for 30 hours screaming in agony only to be told its just indigestion? Not fun. The Gp changed her medication to another indigestion remedy and ordered an X-ray.

 

At the time I posted the first message on here, she had been curled up in a ball in agony, vomiting and not been able to sleep for about 3 days-and neither had I. The GP just said it was a matter of trying to ride out the pain and wait for the tests..We knew there was no point taking her back to casualty because they were not interested. She was seriously ill, but no one would do a thing about it, I've sat her and watched my wife slowly get worse and worse and no one would do anything except tell her to cut out the food she wasn't actually eating in the first place!!

 

But then suddenly we had to move house again,- so now fall under the same hospital we started with but new GP's and I have to say, the new GP's are marvelous..they actually listen, they actually get things done and they actually seem to be interested- we where amazed! I called out the GP after a severe attack, he sent us directly to the Medical assessment unit.

 

To cut to the present day, After a few trips to the MAU, x'rays, barium x-rays, ultrasounds, CT scans and countless blood tests all of which have revealed absolutely nothing! Because they found nothing on the scans they had put her case as none urgent despite the fact she was curled up in agony prety much constantly and huge doses of Tramadol where doing nothing...she was finally admited to hospital after yet again being rushed to the MAU...you'd think we would be pleased wouldn't you?

 

For starters, theres some grafitti in the lift.....its in black marker pen so would clean off very easily. It was there two years ago when I had to go there. And it was there four and a half years ago too when I visited someone in the same ward...that about sets the tone for how clean the place is.

 

Well, I seriously think she would be better off at home. This is what has gone on while she has been on a ward...

 

First of all, the doctor ordered an urgent urine test..which she gave (into one of those grey cardboard pans). This was in the afternoon. The next day at eight am it was still sat there in the pan, the doctor came round later that day and asked why my wife hadn't provided the sample. She explained she had etc...and the doctor asked the nurses to get another..guess what, 12 hours later it was sat in the pan still untouched, along with about three other patients samples that they hadn't bothered with either. The tests arnt being done so what the point of ordering them?

 

And amazingly, as the doctor gave the nurses a talking to for not collecting the samples and leaving urine filled trays laying around..when my wife needed a fresh jug of water she never got one. She was still waiting for it when I turned up hours later and I had to get one myself, it seems they don't like it when you point out to the doctors they arn't doing their job!

 

The doctor comes around to see each patient and tells the nurse to do this test and that test. keep an eye on this and recomend various things- the nurses usualy just look bored- and guess what, the things don't get done.

 

She was pescribed some medication by the doctor, she never got it. When she asked the next day why she had not been given it the nurse just said no one had told her (despite it being written on the notes at the end of her bed) and it was too late now anyway- she still hasn't had it.

 

They are giving her the same pain relief as when she was outside, which was only just taking the edge off of the agony she's in, but they are giving her much less so she is in a lot more pain now- when she said to the nurse that they where not helping the nurse just said "Well if they don’t work there’s no point taking them" and left.

 

The woman a couple of beds away was vomiting for hours, she had filled the pan they gave her and she ended up covering the bed and the floor. By the time they cleaned it up it had dried to the floor.

 

An elderly patient was sat in bed watching TV, and waiting for the results of a scan she had had done that day- a doctor walked up and said “Mrs…………, I’m afraid you have cancer of the ……………” and walked away, Leaving the women crying hysterically. I’m starting to come to the conclusion that 90% of the doctors and nurses working for the NHS are callous, heartless, and self centred and sadistic- they should not be allowed into the profession…perhaps the police force would be better!

 

I just don't know if the best thing would be to get her out of there and bring her home- there are a couple of good nurses, and I know they are overworked and understaffed there but most aren’t even pretending to do their jobs, are insolent and vindictive-my wife is scared to ask for anything or complain about being in pain or feeling unwell. Instead of doing the jobs they should they seem to sit around talking at the end of the ward, and have the attitude that "oh. someone else will do it", or they tell the next person down the chain of command to do, down to the poor student nurses who are trying to do everyone else’s job while they sit around on the a***s making fun of the patients..and I am not joking about that either. I have sat there with my wife and heard for myself the way the nurses talk about the patients, within earshot of the patients, and the terms they use for them – professional it isn’t.

 

Patients are left without medication, and when you go to find the nurse who has rushed off while in the middle of handing out medication to “attend to an emergency” to see why my wife is still waiting an hour later…you find that nurse sat by the main desk on her mobile phone discussing the new car she had bought that week and arranging where she’s going out this weekend- and I’m not joking either – you remind her that she was in the middle of doing the medication round and all you get is a scowl and “I’m busy”.

 

 

So, After almost a week of the urine tests not being done (and the scan not being done because the doctor wanted the urine results first) I found the staff nurse and asked her what the hell was going on, and mentioned complaining…the next morning the urine test got done first thing without a hitch, and guess what. The scan was done the next day!

 

And the hospital still has no idea what is going on still, my wife is still in agony sometimes- although the cocktail of medication seems to stop her being aware that she is in pain. And that’s it.. they have no idea what is wrong and as they have ruled out everything they have a test for, they are left scratching their heads.

 

I feel like making a formal complaint about this, but where do I start and who do I complain to… is there any point and will it make any difference anyway? Or will it make it worse for my wife while in hospital?

[poppynurse]

This is absolutely dreadful and makes me ashamed of my profession.

 

I would suggest that you write to the chief executive of this NHS trust and copy the letter to the Director of Nursing, the Medical Director as well as the Patients Advocacy and Liason team (PALS). Keep a copy for yourself. Head the letter Formal Complaint. Explain what has been going on as you have above since her admission to this hospital (skip the GP bit) and tell them that the situation is untenable and that you expect them to resolve it. Post the letter on here if you wish and we will help you.

 

I would also suggest that you make an appointment to see the consultant and express your concerns and ask what the plan is now going to be.

[blue4ever]

I Have Just Read Your Post Problems With The N.h.s. I Hope Your Wife Is Comfortable And Pass On My Regards. My Wife Has Problems With Her Back And Get Appointment 2 See The Consultant(whilst In Pain) Then He Tells Her To Get A Appointment All Together 6 Months Passes And The Operation Done.it Should Be Done Every 3 Months But Works Out Every 6 Months.life For My Wife Is Hard Waiting For The Appointments And The Pain She Is In Is Unbelieveable.

I Know What You Are Going Through And I Wish You All The Best And Go Kick Butt In That Hospital.my Thoughts Are With You And Your Wife.

[Mrs_Ryan]

I went through exactly the same thing. Parts of your wife's story could have mirrored mine.

 

I was diagnosed (grudgingly) with PCOS when I was 22. I first started showing symptoms when I was 16. My periods were all over the place and since the age of 10 i had quite often been screaming in pain with them, like your wife I had hair in places I shouldnt have so I went to the gp who to be fair was very good, did tests which came back positive so she referred me to the local hospital.

 

They basically said the same thing - go away and lose weight, theres nothing wrong with you. When I mentioned the GP's tests, I was told that was rubbish and it was all in my head. Like your wife, I had very bad depression and also self-harmed. I wasnt sleeping at night and was drinking very heavily to try and block out the pain, I had a minor breakdown and was put on anti-depressants but no-one seemed still to be able to help. I moved to a different part of the country and was referred to the specialist womens hospital there. Same old story there - 'go away and lose weight.' They sent me for an ultrasound which was horrifying - I had to sit in a room full of pregnant women which really hurt. The sonographer wrote on my notes it was ' the worst case of PCOS she had ever seen' and I saw that, so when the doctor again said 'oh, theres nothing wrong with you.' In despair I said 'Well why did they say that then?' and she just said 'Thats not necessarily accurate.' I blew my top then and all the frustration and anger came spilling out which the doctor was quite taken aback by. I said that I was sick of being told it was all in my head and treated like I was a hypochondriac. She then grudgingly said it did look like I had PCOS after all but by that stage - like in your wife's case, it was too late for me and treatment options were limited.

 

I moved to Nottingham to start a nursing course not long after and my problems began to get worse, I was sleeping for 14 hours a day and the pain in my knees was so bad I couldnt drag myself up the stairs to my room in halls and was dragging myself upstairs on my hands because I couldnt walk. But I was still caring for patients amongst all this - so see, we arent all bad!!

 

i couldnt find a GP that would accept me, they all said I was the university's problem and by that time, I was getting worse. I lost my place on the course due to my extreme tiredness because I couldnt concentrate during the exam. THe university at first refused to acknowledge my condition and said it had no bearing on how I performed,despite the fact at this time I was close to being admitted to psychiatric care due to my extreme depression. Eventually, my GP wrote them a very strongly worded letter and I think I became only the second student to have my decision reversed in this way, but unfortunately I was too poorly to return within the time limit allowed and had to withdraw. my GP also told me that as a young (I was 25 then) single woman I wasnt priority to be referred to hospital and just described me anti-depressants.

 

I moved again and finally found a sympathetic GP, who also prescribed me metformin and Dianette. Im Catholic as well, (although given the fact I live with my partner and we are not married Im sure that means Im not a real Catholic ) but I was happy to take the medication because it was not presribed as a birth control pill and with all due respect, Im sure that due to your wifes condition conception would be impossible anyway, so as she was not taking it to prevent conception, how does that go against the teachings of the Catholic church?

 

Have they tested her for endimetriosis? It sounds to me like she possibly had a burst cyst. A lot of NHS doctors and consultants are totally ignorant of PCOS so thats why she had such a tough time, unfortunately. As a former student nurse myself I have been on the recieving end of having to do everything for senior nurses which isnt much fun. But the only way you're going to get anywhere is to complain. I didnt, and Ive been left with a chronic illness which effects my daily life to such an extent Im told it is now close to being classed a disability... Ive also developed hypoglyceamia which means Im constantly having to watch my sugar levels which isnt any fun. Make sure you get some justice for your wife, dp.

 

Good luck, I really hope it all goes ok for you.

 

*hugs*

 

Mrs R xx

[crazyadi]

i would rarely encourage anyone to see a solicitor regarding sueing the NHS, however on this occasion what i believe should be the criteria for anyone to be able to make a claim has occured in your case, there has been wilful neglect and that alone means you should do something about! there are many solicitors who specialise in medical cases and i think you should see one as soon as possible.

 

however......

 

I’m starting to come to the conclusion that 90% of the doctors and nurses working for the NHS are callous, heartless, and self centred and sadistic- they should not be allowed into the profession…perhaps the police force would be better!

 

is out of order, i find it difficult to see how someone who would wipe someones backside for them could be considered callous and heartless and they certainly cant be self centerd.

 

I know you have had a bad time, and been subjected to very poor treatment but i think you will find the figures are the other way round and its 90% of doctors and nurses do give a **** and 10% who dont.

it as a fact that sometimes things get lost, forgotten etc, if a nurse/doctor is in the middle of something and they get called to an emergency say a cardiac arrest it is completely understandable that after an hour of trying to resuscitate someone they will forgot about stuff, if however they were sat on the phone, then there you have one of your 10%

 

again see a solicitor and i hope you get some satisfaction.

 

crazy

[Bernie_the_Bolt]

however......

 

 

 

is out of order, i find it difficult to see how someone who would wipe someones backside for them could be considered callous and heartless and they certainly cant be self centerd.

 

I know you have had a bad time, and been subjected to very poor treatment but i think you will find the figures are the other way round and its 90% of doctors and nurses do give a **** and 10% who dont.

 

But that's a classic one rotten apple spoils the barrel situation.

 

OP does say "I'm starting to come to the conclusion" suggesting that he knows it's unjust but it's how he feels and reflects his experience.

[emmaf01]

After watching someone you love go through such a terrible (and ongoing) experience, I think the OP's words were relatively subdued!

 

I think now is definately the time to complain to everyone from your MP, every head of every department your wife has had contact with and your local PCT.

 

Don't forget to praise those who have been good amongst your complaints- it shows you have balance eg a good GP. But roast the rest.

 

If you need any help just shout on the forum- many of us have had success with NHS complaints, etc in the past.

 

And my best wishes to your wife- I hope that somehow she will be feeling better soon.

[Erovanproach]

i would rarely encourage anyone to see a solicitor regarding sueing the NHS, however on this occasion what i believe should be the criteria for anyone to be able to make a claim has occured in your case, there has been wilful neglect and that alone means you should do something about! there are many solicitors who specialise in medical cases and i think you should see one as soon as possible.

 

however......

 

 

 

is out of order, i find it difficult to see how someone who would wipe someones backside for them could be considered callous and heartless and they certainly cant be self centerd.

 

I know you have had a bad time, and been subjected to very poor treatment but i think you will find the figures are the other way round and its 90% of doctors and nurses do give a **** and 10% who dont.

it as a fact that sometimes things get lost, forgotten etc, if a nurse/doctor is in the middle of something and they get called to an emergency say a cardiac arrest it is completely understandable that after an hour of trying to resuscitate someone they will forgot about stuff, if however they were sat on the phone, then there you have one of your 10%

 

again see a solicitor and i hope you get some satisfaction.

 

crazy

 

I don't think you should be attacking this poor man for his experience with the NHS.

 

It's obvious that 90% of the staff he and his wife have seen are what he says.

 

You should be ashamed to kick this man when he' down.Your comment is a kick in the teeth for a wouded man.

[seanamarts]

i would rarely encourage anyone to see a solicitor regarding sueing the NHS, however on this occasion what i believe should be the criteria for anyone to be able to make a claim has occured in your case, there has been wilful neglect and that alone means you should do something about! there are many solicitors who specialise in medical cases and i think you should see one as soon as possible.

 

however......

 

 

 

is out of order, i find it difficult to see how someone who would wipe someones backside for them could be considered callous and heartless and they certainly cant be self centerd.

 

I know you have had a bad time, and been subjected to very poor treatment but i think you will find the figures are the other way round and its 90% of doctors and nurses do give a **** and 10% who dont.

it as a fact that sometimes things get lost, forgotten etc, if a nurse/doctor is in the middle of something and they get called to an emergency say a cardiac arrest it is completely understandable that after an hour of trying to resuscitate someone they will forgot about stuff, if however they were sat on the phone, then there you have one of your 10%

 

again see a solicitor and i hope you get some satisfaction.

 

crazy

 

I have spent most of my life in and out of hospital and found that this is the same story in many of the hospitals that I have been in, bed pans being left, old people being spoken to like children and being shown no sympathy. medication being administered late or not being given at all. I myself was left in a toilet after having a major stroke for over an hour freezing cold, i was only found after my partner was worried and started asking about me. the nurse who left me there went off duty after putting me there and didnt tell any one i was there. honest mistake maybe but at the time i was petrified as I couldnt talk couldnt walk and was not able to pull the emergency cord.

Patients are often spoken too as if they shouldnt be there and on many occasion i have signed myself out because of the care that has not been provided. I am one of the lucky ones and have a brilliant care net work so i am able to have the care out side of hospital but its not cheap either and often have to pay for round the clock care thank god for DLA is all I can say.

So before you jump on some one for slating the NHS try being in that position where there has been a lack of care and nurses are not providing the service that they are being paid for albeit not enough imo but that is the profession they have chosen.

The NHS are in a sorry state of affairs and need to be closely monitored even more so when there has been a lack of staff.

Some do do a great job and have many friends as nurses mainly through my staying in hospital and i do pull them up if the care is not provided...

 

I dont agree though that compensation should be given willy nilly as in most cases but unless it has caused a life long problem through neglet then yes compensation should be provided.

by all means complain and complain to the right people and make your voice heard. but what will compensation provide for you in the long run ??