Dear MiGi,

my mum was diagnosed on December 2nd 2018 and passed away Friday 11 2019. 

The hardest part is the first week when you have to come to terms with what’s happened. After you’ve conquered that, it’s odd to say that you get use to it. Prepare yourself for when your father changes physically and - mentally depending on the person. 

I can’t advise you on what happens after as I am grieving but I can maybe help on other issues.

The hospital has no right to make you leave and we made such a fuss that we ended up getting to be with mum 24/7. You need to push for it and ask for a meeting with the head nurse and doctor. You have every right to be there !! 

We use to try and create a happy feeling in the room by bringing up good memories and times and specially funny moments. It’s not easy to put on a brave face but it does comfort the patient and in this case your father. Mum loved it and I think it brought her peace of mind specially that the news is so horrific that you have received that you need to melt it down and replace it with happiness ( I know that it sounds quite odd but you’ll see with time). 

Your father will come to terms with the news and the best thing you can do is to create a peaceful and happy environment. We use to play disney music such as the jungle book and Pocahontas as mum was a true child at heart - it cheered her up and even though she wasn’t able to communicate she’d try to smile and would calm down immediately. 

I put on a brave face and did what I had to do. You’ll have time to grieve so in the meantime while you still have your wonderful father, make the most of it and bring joy around you. Make it a happy memory so that when you think back in it you remembered the smiles and the laughter and not the dark times. 

I hope I haven’t chewed your ear off with my long message. I wish you strength, love and happiness. xxxx 

Hi Ldn91, 

Thank you! I'm so sorry you lost your mum. That was so quick too. You're probably still in shock. I know we are. 

If dad ends up in hospital again I'm taking no messing at all. [@davek]‍ I'm going to be strong and I will stand my ground and make a formal complaint. 

It sounds like we are handling things quite similarly. Dads home at the moment and so we've been sat with him talking and laughing, even teasing him. Every time I leave him I say to him "stay alive dad" and he says "I'll try lovely girl". It's become our little joke I suppose. If joke is the right word because it's so real. He idolises his grandchildren so he's had them there playing and although he can't play with them now he'll tuck one of my twins either side of him and they'll watch tv and chat. It is all so sudden. I can't even remember when he was diagnosed now, I think it will be three weeks next Wednesday. He was ok before that.

He had an awful turn last night. He was slurring and hunched over just not himself at all. I think he waited until he saw me before letting go and letting out his suffering. He was having a huge panic attack but he's never had one before so of course he thought he was actually dying.   The ambulance team took over half an hour to arrive (not their fault at all but half an hour is a very long time in a situation like that especially as we thought was dying too to be honest). When they did arrive they really showed up they were incredible. We had an ambulance, a rapid response car and a car full of the air ambulance doctors. I've never seen anything like it. 

However the follow up care is really strange and I'm still navigating it for him and mum. They made him an appointment at the out of hours doctors for 9.30 last night for anxiety meds. Just after they left he came over in absolute agony. I have never seen my dad cry before but he was crying and saying "help me" you can imagine the rest and he told me he was scared and embarrassed and he said he has never in his life had pain like it. I took him to the doctors and they were fab. Upped his morphine and gave him anxiety meds. 

None of the guys who helped us last night were impressed that dads palliative care team aren't coming until next Thursday and the doctor wasn't impressed that my dad was expected to go to an appointment. He said it has to be a home visit unless my dad specifically says he's well enough to attend. I just feel like we are at the mercy of people who don't care that much sometimes and who seem to put dad on the back burner. Even with this biopsy on Wednesday. If they'd have done it sooner and started his treatment he would have had a chance. Now it's with a heavy heart that I say after last night I don't think my dad is going to live very long at all, I really don't. He fell asleep with his head in mums lap last night, this isn't my dad.

I do agree with [@davek]‍ and I think if things go wrong we all have a duty in a way to complain because a lot of it is down to there being no compassion and by complaining we bring attention to the issue and it could stop someone else going through it. 

On TV you hear so much positivity about cancer, cures for this and that, funding all over the plane, charity events etc....but I can honestly say in real life there have been no positives with it. I probably shouldn't say that but it's true. It's the worst thing I've ever seen. 

Everyone here is in my thoughts and I'm so sorry to everyone who's feeling pain from it all. 

Tracy. Xxxxxxxx

I totally understand it now I’m in that position. Lots of my family have worked for the NHS as nurses, managers, as receptionists, all sorts and I’d never in a million years have thought I’d ever be someone that would even consider suing the NHS. My dad had a total freak out on me years ago because he had meningitis and needed a brain scan but they blatantly said that it was too costly and couldn’t be done. I rang the consultant and told him If money was the issue I was coming in with my credit card and was going to pay for the scan and wanted it done immediately. (I had a good job back then) By the time I got there which was within the hour they had already booked dad in! But dad wasn’t happy because he felt he’d bypassed other needy people just because I’d flashed my cash so to speak and the whole idea behind thr NHS was for It to be free at the point of need so he objected on principal to what I did so we had a big argument over it. But sometimes you have to do things you don’t want to do and if suing them is the only way that we will get an apology and an explanation that’s how it’s going to have to be. In our case it’s blatant what they’ve done and no amount of compensation will ever put it right. What would put it right, right now is an apology and an explanation and the nurse being fired. And a promise that this will not happen again to anyone else. That would stop me taking this further and all they’d lose is a bad (dangerous) nurse which is no loss to them anyway anyway but seeing as they don’t want to do that I HAVE to take it as far as I can even though it potentially could cost them a lot of money. They don’t seem concerned that they have a dangerous nurse there and don’t seem concerned about the money either. But for me suing looks like in order to get what I want it’s unfortunately what I might have to do. 

Hey Billy, 

Not long after you posted [@davek]‍ Sent me some info to help find a solicitor so I’m going to give them a call on Monday morning and go from there, I’m going to keep everyone updated so hopefully I might get somewhere with this. Fingers crossed. 

Im not happy about it at all but I’m trying not to be angry. I’m throwing myself into studying and really trying to keep as focused as possible. Im struggling but it’s with very low mood and it’s more feeling like I just don’t want to go out. But today I feel much better than yesterday better than this morning even so it’s literally an hour by hour, day by day thing. I get angry when I see mum crying and breaking her heart. She still blames herself and she did nothing to deserve this life sentence she’s ended up with. It’s so unfair that in her 60s with the huge  problems she’s already got that she has to live with this but she’s finding the counseling helpful she says. And she’s trying so hard. We can all see it and I’m really proud of her. But how I didn’t physically attack the nurse at the time I’ll never know. And maybe as part of my grief I will start to feel angry. I just don’t know how to feel at the moment. 

Do you know it’s 4 months since he died now? I can’t believe it. Mum said it seems like such a long time ago but I feel like it was last week. 

I’m doing all the things I do to make myself feel better like I said before pampering away! Face mask, bubble bath, painting my nails, it really helps. 

How are you doing anyway? I’m always going on about my own issues and once I start writing I don’t stop you may have noticed!! 

Xxxxxxxx

Hi Migi don't worry about me, I'm as good as can be, i always think coming on forum as a way to rant let out some of the anger it definitely helps. I've let go sometimes and do a good letter then realised my language is rather bad and deleted it, but even that helps. Hope your new information from davik really helps. Good luck and best wishes............. Billy xxxxxxx 

Thank you MiGi, for your lovely thoughtful reply.  sometimes it feels after all the anguish we have been through your family as well as mine, that its amazing we are functioning at all. I just feel mostly disgusted with the NHS and the blatent cover ups. In one incident  where my husband and I complained the hospital even had a police report done. However despite the written statement of a witness, another patient who happened to be a hospital chaplain, it still ended up being dropped because the hospital hierarchy decided it was my husbands word against the nurse's. As though a man who knew he was dying with cancer has the time and energy to make statements against a nurse, is going to lie. And a chaplain was also lying.  It was just another slap in the face. Its difficult to fine words to describe how disgusted I am with such a system. I know how we need it but it needs more then a shaking up. I lived and worked in the USA for over 20 years,  and I do appreciate it cannot be the same as private health care, but he staff and managers should still do a decent job  and treat the patients with the dignity and respect they deserve. That does not cost money.  Sorry for the rant. Thanks again MiGi it just makes me so angry its still happening.  xx

I agree I feel awful but everyone, my family, friends and friends here keep reminding how well I am actually doing and Ive been able to step back and see things more objectively as a result. 

You are so right that after all of this its a wonder we are coping at all. But we are. Sometimes it doesnt feel like it and sometimes its so so hard and sad and absolutely crushing but we are still finding a way through and Im trying to see that as a step in the right direction. 

I agree its apalling that not only do you endure this horific experience that has hurt so much and changed your life for ever at the hands of so called profesionals but then they deny it ever happened!

Initially I was told to complain, by the site manager at the time by the ward sister that day (she telephoned me herself and had the complaints form ready on reception for me-I didnt ask for this or for her to call me!) But disgraceful then that when I did complain and they did their (botched) investigtion that they say it hadnt happened at all in the way I said!( even though when the sister called me hours after dad had died and told me to please write down everything that had happened before I went to sleep because Id forget, I did so with my daughter in detail and still have these notes they formed the basis of my complaint so it was 100% accurate).

So then you have to deal with the fact that not only did this happen but its now being denied and the struggle to either accept it or prove it begins. On top of the pain and suffering thats already there as a result of whats happened. Its a sick joke almost like a black comedy sometimes. 

They know, they do. They know the truth and they know exactly what theyve done to us. My dads notes (theyve ben referred to by the consultants in the coroners report so I know little bits) clearly show he was left without painkillers in the hours leading up to his death but he was prescribed to have them every hour and uo until the night shift took over and the problem statred was having them every hour. Its common sense then that if you suddenly stop pain relief for a patient in that state that its not going to be pleasant. But aparently not! Even with the coroner he said it wasnt suicide but dad "deliberately depleted himself of oxygen" which "accelerated and changed the timing of his death" Well what is that then? Its an absolutely atrocious and vile play on words because they dont want to admit the truth. 

Ive heard so many awful things about the system lately and like you said what weve been through is nothing to do with money. Its about respect and dignity of the patient and thier family. Not much to ask. Im disgusted with it too, I still cant quite believe it. I wish I knew when we were going to start feeling better. But whatever you think whatever you feel I understand I really do. Love and hugs.

XXXXXXXXXXXX

Hi Migi, hope you don't mind me sticking my nose in was wondering how things are going with your new job, and if any thing got sorted with your complaint. I know you've got alot on your mind so no rush. Just hoping things are getting sorted.

I had a bit of good news from oncologist, had another bone scan (I'll never get usto being injected with radiation) my cancer is still there but hasn't spread anywhere else. Yippee i think anyway..

Bit of bad news my darling wife has been diagnosed with Alzheimers and parkinsons but two different specialists gave us the results so didn't know if there both right or if one of them is wrong. Hope to find out soon. 

Hope you are keeping well thinking of you. Love... Billy xxx 

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. 

XXXXXXXXXXXXXXXXXXXXX

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,

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