Hey Billy,

Typical, not even an acurate diagnosis. How can two doctors give two different diagnosis? You would think theyd talk first to decide what to tell their patient. Then again........ Unbelievable. I hope youre wife is ok Billy. Im so happy to hear that you had good results though!! Its bittersweet though isnt it when your poor wife has just had this news. 

Im ok, Ive had a really nasty virus the past two weeks, I still havent recovered but at least Im out of bed and back to it a bit, Its hit me like a train! 

No real news though. My advocate is still refusing to respond to my emails. My mum is in pieces. 

I approached another solicitor but they couldnt take on my case because there isnt enough money in it. The cost of fighting it outweighs the return so thats a no go. 

And we still havent managed to get my dads hospital notes from the hospital yet. 

We still owe the Funeral directors £500 so theyve written to mum to tell her theyre taking her to the small claims court. Im so annoyed. Im the one who told her not to pay them anymore money. They had over £2500 from mum and I said over my own dead body will she walk in there after the mess they made of dads funeral and pay any more but even thats become an argument over money. I wouldnt be surprised if they take us to court and force us to pay either.

The world has gone mad. I just dont want to talk about money anymore. But then Im not letting my mum go in there and hand over any more and I dont want any compensation, I want an apology! Its ridiculous. 

Ive started uni and Im throwing myself into it to distract me because Im beyond devastated. I saw the doctor a couple of weeks ago and hes given me sleeping tablets and theyve helped. The panic and reliving it all just got too much in the end but Im much better now. Really I need to get a grip on it all again and start fighting, I just ran out of strength for a while I think. 

Its so lovely to hear from you though. 

Take care, lots of love and hugs. 

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Hi there ...

So lovely to hear from you .. shame your still getting nowhere .. but it seems only the rich get justice ... life's a bummer .. here's hoping your uni course goes well ..

Life's sent me some bazookas... sis with dementure is at end of life now .. and the only thing she has now is pain ... the care home should be called the care(less) home ... it's heartbraking .. to see someone close like that ... it's really not fare ...

And we were going to Florida with my son and family ... last thing on my bucket list... just the day before my oldest granddaughter 17 ( well 18 today ) ... got taken to hospital and diagnosed with acute myeloid leukaemia  so instead of mickey mouse shes just had her first round of chemo.... and to say im so proud of her is an understatement...now the holiday insurance is trying not to pay out ...

I'm just saying this so you know your not alone .. seems fate has it in for us at times .. just want a break from bad news ... but fingers crossed put your heart into your course ... and I want you to pass with flying colours ... sending a vertual hug to you and your mum ... Chrissie  

Hi Migi. 

Hope your still OK.

Been struggling with my darling Brenda last few weeks she's more like a zombie sits there staring in space, no talk no movement hardly. 

A real good friend asked what meds she was on and straight away told me to stop one of them. (she is medicaly trained).

Next morning she's taking notice, talking really good and started to feed herself, she's been on these tablets for over 10 years now she should never have been on them there for schizophrenia which bren hasn't had, i got in touch with brens nurse told her she was quite happy I'd done it, they are now going through brens meds to see what else she doesn't kneed

But i think it's a devil when you have to take someone off medication to make them well. .,

It's been recommended we sue to make sure it doesn't happen to others brens thinking about it. Really it was her it happened to. 

It just makes you so mad with these experts getting things wrong and someone else putting it right.

Hope you don't mind me venting a bit to you but i know you've been there done that. 

Hope all is well in your household. 

Love..... Billy xxx 

Hi Billy,

Even if you don’t decide to sue, it would be worth raising a formal complaint with the care provider (GP, Pharmacist and/or NHS Trust) and CQC. 

A full medication review is required annually for everyone with a long term condition to prevent this sort of thing from happening. 

www.cqc.org.uk/.../medicines-reconciliation-medication-review

Best wishes

Dave

Hi Billy,

Its dreadful, Im so sorry. I dont know but from what Ive seen lately its a shambles and no body knows what theyre doing. My immediate reaction is to raise a complaint like Dave said to start with. It just depends how much energy you have to stick at it because they dont make complaining easy thats for sure. I only had dads notes sent to me two weeks ago after my advocate had repeatedly requested them. And all they could say was that they missed the requests! The other thing that hurts is that they dont actually care that theyve messed up and the impact its had on the patient and family. Its a really strange thing because you would automatically assume they would bend over backwards to apologise and take steps to stop i happening again but they dont. They deny it ever happened and make you feel like a liar. Youre left in the position where you are trying to convince them that they really did kill or seriously harm your relativee and they wont have it. But if you are made of strong stuff Id say start complaining NOW!! And stick with it because its disgusting what theyve done to Brenda and unforgiveable theyve taken away a part of her life for a long time and you found out by accident really! What if that friend had never have asked you what meds she was on? I am shuddering at this. How many other people are going throught this right now and dont know? 

Its horrendous and I feel for you. 

Were okay here, I have the older ones and the little ones home. Weve never done so much baking! We are just trying to make the most of the family time we are having because normally we are all rushed off our feet! 

Take care Billy,

Lots of love. XXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXX

I just thought as well, this happened to my dad when they gave him far too much morphine and It happened to my old hairdresser about 15 years ago. She was pregnant and they swapped her epilepsy drugs to ones that should never have been given to a pregnant woman. I wont say too much here because its not nice and I dont know who is reading but I will say that the 20 week scan revealed things that were extremely hard for her to deal with and the baby is not here they had to intervene if you see what I mean so she had to go through that trauma as well. Im 100% sure she received a full apology and I cant remember if she actually sued them. But like Dave said theres a full medication meant to happen every year to stop this happening so something has gone seriously wrong for Brenda. 

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Afternoon all. I am so sorry to hear these awful things still happening. I do think about you and hope all is well and you all stay as safe as possible. Who knows perhaps one day we can all meet at some central point. Best Wishes Betty x

Hello Betty! 

My daughter is a student nurse as you know and we are often hearing horror stories. She had a little read through some of the content here earlier on and was very emotional seeing how many mistakes are being made and how people are suffering individually not just as numbers. Shes also just gone through my dads situation with me and is helping me to cope with my mum and the heart breaking fall out its created. I dont know whats up with the NHS my daughter is in the middle of her degree now and really doent want to be a nurse anymore or have anything to do with the NHS. Its really sad because she is the sort of nurse they need but she says shes learned more about how not to be a nurse than to actually become a good one through her training so far. Theres a big difference in how they are trained at uni to how it works in practice. At uni they are all taught to do their best and the right thing for the patient, so theyre trained the right way but the second they go into the real world and are on placements in the hospital setting you can see how it all falls apart basically because the rules arent followed but this is as simple as not even obeying infection control methods which is basic stuff so you can imagine the mess of things if they have to do nything more complex. Its really sad and Im not happy. My daughter feels like shes wasted her opportunity at uni to do a degree she doesnt believe in anymore but its easy to see how someone who has gone through what ALL OF US HERE could be turned right off getting involved in an institution that allows this to happen on a daily basis without thought or feeling of the impact and suffering it causes. Im still so upset by what happened to my dad, its still so raw. Its worse because my mum isnt coping and not accepting it. She has accepted that he has died because he was so unwell but she cannot accept the way they let him die and she feels resposible because we were there and couldnt help him. Funnily though she blames herself but doesnt blame me and I was there too, I have tried to explain this to her that if she is to blame then so am I but according to her Im an angel so her logic doesnt work but Ill keep trying with that!! 

I havent got any words of wisdom or support for anyone who is going through this or has been through it but I wish I did. I wish I could get the answers for my self and I wish I had the answers to give. 

The one thing I do know is that everyone here especially us in our own little bit (me, Dave, Betty, Chrissie, Billy goat and anyone Ive missed) we have all created a little bumble of pure and total understanding which has meant the world to me and still does, always will. 

I would love to meet up when this is all over. Definitely count me in for that. Id love to give everyone a real hug to go with the virtuaal ones we have been sending all this time even though they are all priceless and so comforting. 

Im just going up for a long soak in the bath, Im still taking time out to pamper myself to relieve stress, its only an hour but its my hour to think and cry and allow myself the time and space to be emotional and let it out. Im going to cover myself in fake tan and my daughter has volunteered to do something to my out of control eye brows! A strange thing, I hadnt cried about my dad for ages, I get tears and the urge to cry but they sit in the bottom of my eyes and dont come out even though I can physically feel them. I cried last night. The doctor upset me yesterday by complaining that I take pain killers for a back problem Ive had since having my twins, she said that they are addictive and I should try to wean myself off them bearing in mind I have only ever taken two in the morning to stop the pain for the day and two at night to stop the pain so I can get some sleep. I was so upset that she said "Try" and "Wean" as if I was popping these pills every hour or something that I have told her to stick her pain killers where the sun doesnt shine and Ive refused to collect them from the chemist. I have probably fallen into her trap its probably that the pain killers are expensive or something but I am stronger now and I wont have it! I would rather be in agony than accept pain killers from her ever again after she threw that at me right in the middle of lock down so I cant even see my own doctor for a review. But this is just an example of how doctors dont listen to patients and how things can go so wrong. I feel I have to prove a point now by refusing pain killers to show how much I need to try to wean myself off them!! Meanwhile Im in agony. At no point did she ask if I was okay and when I asked for an alternative pain killer instead of these super addictive ones she said no, it was a wasted discussion because I didnt get anywhere and neither did she. So yes I did get off the phone and ball my eyes out, initially I was feeling like Id been accused of having a pain killer addiction by the doctor (not even my doctor!) then I was crying because I thought they will just leave me in pain now because they dont care and then obviously it went onto my dad being in pain and noone helping him. So I got a lot out yesterday-it comes at weird times and in its own time! 

On the positive side of things though, so far so good, we are all healthy and happy. Im doing well at Uni youll be pleased to know guys that I had 69% in my first assignment and 64% in my last one. Ive just submitted another one which didnt go so well because we had just started lock down and I was trying to balance (not very well) trying to homeschool the babies and do my own work but Ive found the balance now!! (6 weeks later!!) 

I hope everyone is okay, its such a weird time with all of this going on in the world and our own individual trauma. Im sending everyone lots of love and hugs, we will all get there in the end even if we do have to take it day by day. 

XXXXXXXXXXXXXXXXXXXXXXXXXXXXXXX

Morning Migi

I can understand about your back, My son is waiting for a back operation, he cannot sit down only stand and lie down, the pain is so bad. At least his GP has been Ok. However this operation is not happening until this Corona Virus thing is over. Who knows when that will be. I wonder how the people who decide these things would like  not to be able to sit  down , they have no idea. So there you are in pain, thats awful but I can understand your reaction, its always people that hurt us more so than the pain a lot of the time.  Please pick up your prescription and next time you request your repeat ask for  a referral to a consultant. Look after yourself I think the NHS is overwhealmed I think it was even before the Covid 19.

It is very sad about you daughter becoming disillusioned, she is just the type of nurse we need at a time when we are sick and vunerable and just need to speak to a human being.

Meanwhile congratulations on all of your uni results, sounds to me like you will be great. 

I wish I could remember my husband when he was well, but the way he was treated just seems to pop into my head  when  I least expect it, and yes I know I am supposed to remember the good times we had but the end just seems to overwhelm everything.

   Looking forward to a time in the future when we may all meet. It is terrible the way all of us on here have been treated

 Stay safe and look after yourselves.

Betty x