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

Hi migi yes i agree it kills your spirit im(always was chearful and caring) but lately i get so mad at the way things are going, i still don't understand when my wife has got an infection in hospital why didn't they give her something and something for her pain that works, same as me taking her home with dierier, soon as i got home i had to fetch some pads and things because it was all over the place, all the hospital was worried about was getting rid of the blockage, sorry I'm ranting a lot if i don't I'll probably explode, be interesting to see what the Dr says on Monday if i can get in touch, thanks for listening,... Billy 

Please raise a formal complaint detailing all of this to the Trust copied to CQC, don't be an unwitting part of the cover up. This is what the CQC describe as a "never event" - something which should never happen in a well run hospital. 

Hi Dave, 

So far I’ve had a meeting with the head of bereavement services at the hospital. Then a meeting with her and the consultant. I have a solicitor who told me to report it to the coroner. I’m waiting for a reply from the coroner to see if he will investigate. The consultant told me that it wasn’t suicide because he had terminal cancer and whether he’d died that day or the next day or a week/month later his cause of death would still be cancer not suicide. But I disagree and refused the death certificate and I refused to register his death using that certificate. I just assumed his certificate would say suicide because that’s what happened I didn’t realize I’d have to argue over it so that was a bit of a shock. I don’t know how to make sure I write to the right person or do I just wait for the solicitor to get started? 

Hi and so sorry for your loss .

My dad died 2 weeks ago due to stage 4   Foodpipe OC Cancer . My dad was treated very poorly from the NHS , started with a diabolical biopsy then treatment plan *** poor . I've never seen anybody suffer so much and it will haunt me the images of seeing him in this way .

I can say the only positive was his last 9 days were in a hospice where the staff were fantastic , i did not want him in no hospital at all . He was on a driver and they controlled the pain but he suffered, soon as he arrived there he cried and told them he wanted to go , ( die ). *** Cancer.  NHS a joke regarding some cancer patients especially older people . Shameful .

Hi, 

Since dad died my mums brother who is super sociable and through various projects he’s involved with knows thousands of people in Cardiff has been talking about what happened to dad and he said he can’t believe the amount of horrific stories he’s hearing about the place my dad died re treatment and end of life care etc... BUT nobody complained. And to be honest my mum wouldn’t have complained. She’s so traumatized I’ve taken over everything even answering her phone, she is in no fit state to even know where to start and she couldn’t find the words anyway all she can say is why? My dad was treated poorly all the way through and the amount of suffering before he even got to hospital and died is unbelievable. I said I’d complain about it all after he had gone but I didn’t expect to have to complain about his death! All the other suffering and lack of care just seems so trivial now compared to this but it’s not it’s all horrific and the same as you, it’s bad enough for the patient but they don’t understand the impact on the family. My mum will forever see this she feels so so guilty and responsible for what dad did in the end and I think she always will. I’m super strong and I can see him and hear him dying all the time, I keep having to physically take deep breathes and tell myself stop it focus on what you’re doing, don’t think about those things because if I do I don’t know where my head will go with it. I haven’t been able to work out if it’s lack of money, lack of resources when they’re ill but nobody seemed to know what to do or what was going on and the most hurtful parts were nurses attitudes and just a complete lack of care and empathy. And in the end they just didn’t do their job. It’s so hard and I wonder if it’s  worth you writing it all down and complaining. I feel like the time to stay quiet and be accepting of things has gone. For me anyway. I’m so sorry for what happened I really hope you’re ok. I honestly don’t know what to say. But sending you big hugs and hugs to Betty, Chris, Dave, Billygoat and everyone else who has been here for me. Xxxxxxxxxxxxxxxxxxx

Hi and thank you , i know what your feeling as our dads seemed to have suffered the same poor and uncaring treatment from the NHS . It is simply a scandal how they prioritise certain age groups and social types . 

For me it is simply a case of let them die , don't bother! 

I have to say without my partner is be so so angry and volatile , im lucky to have support but nothing will change how my beloved Dad was treated by our NHS.

Im saddened to hear your heartbreaking dad suffered so much . One consolation is that he is no longer suffering due to this disgusting evil Cancer ! Stay strong. Xx

I know the feeling I honestly believed right from the beginning they’d written my dad off, he was only 62. I couldn’t believe that nowadays they could be like that. It’s hard to accept and hard to process. It’s like I said before it goes against everything I am, I’m not medical but I’m a really caring person. I couldn’t do what they did to my dad and sleep at night. I’m devastated like you are and [@Brien]‍ Betty is the same. She’s suffering months later and that’s another tragedy on top of losing a loved one. I get mad if I think about it too much. That’s why I’m deep breathing. Talking here helps so much though. Xxxxxx

Hi everyone, 

Just an update, the coroner has ruled death from natural causes, my dad did not commit suicide. 

Whether he’d died that day, the next day or a week later he was terminally ill so that is why he died. So basically what happened in his room and the conversation I had with him officially did not happen. Wow. Im so grateful they’ve told me that. I can cancel my counseling now with the bereavement services as I obviously imagined the whole thing. 

Xxxxxxxxxx

Hi ... well bet your really relieved now ...  not ... but you keep writting everything down .. it's a long process and can take years .. but remember the hair and tortoise story .. bit by bit .. step by step .. you need to be in it for the long hall .. so don't use all your strength now ... it will come around .. try not to let that drown your emotions .. I know it's really hard to overturn his decision... but it's those nurses that ignored his pain and your crys for help from the begining of his journey to the last part ...

Wer all behind you .. but look after you too .. you've had a huge trauma ... and still living it ... so glad Dave has given his wonderful advice ... sending you a vertual hug..    Chrissie x

Thank you. I am so upset today. I emailed the coroner to ask him if he would write a letter to Mum  explaining his investigation and the reasons he came to his conclusion and he refused. He said that while the voluntary removal of dad’s oxygen mask and reduced oxygen may have accelerated his death it’s still the cancer that killed him. I’m not allowed to contact him directly (and the assistant can’t assist) and am not allowed to appeal his decision or discus any part of it with him. He based his decision basically from talking to two consultants at the hospital, and didn’t even call me speak to me himself directly, it was his assistant who passed on the message after a decision was made. We expected a meeting and to be asked questions by the coroner etc.... I really don’t think they are taking it seriously at all. I honestly feel like this must have happened a thousand times before because he is just not interested, it’s as if it happens every day and is nothing unusual that needs investigating. It’s as if he’s saying that as my dad was terminally ill he didn’t have the right to take his own life because he was already dying? Im sure there’s a logic there somewhere! But I can’t find it. Well all I can say is if he thinks an absolutely horrific death like that under those circumstances is completely normal and acceptable he’s in the wrong job as well. I also wonder what his definition of suicide is. I got mine from the dictionary. This is why changes aren’t made and why this is allowed to continue happening to people on here that we hear about every day. Officially my dad’s death will be recorded as cancer and there’s nothing I can do about it. I’m beyond gutted. I’m absolutely empty. I can’t believe it.     XXx

Thank you. I am so upset today. I emailed the coroner to ask him if he would write a letter to Mum  explaining his investigation and the reasons he came to his conclusion and he refused. He said that while the voluntary removal of dad’s oxygen mask and reduced oxygen may have accelerated his death it’s still the cancer that killed him. I’m not allowed to contact him directly (and the assistant can’t assist) and am not allowed to appeal his decision or discus any part of it with him. He based his decision basically from talking to two consultants at the hospital, and didn’t even call me speak to me himself directly, it was his assistant who passed on the message after a decision was made. We expected a meeting and to be asked questions by the coroner etc.... I really don’t think they are taking it seriously at all. I honestly feel like this must have happened a thousand times before because he is just not interested, it’s as if it happens every day and is nothing unusual that needs investigating. It’s as if he’s saying that as my dad was terminally ill he didn’t have the right to take his own life because he was already dying? Im sure there’s a logic there somewhere! But I can’t find it. Well all I can say is if he thinks an absolutely horrific death like that under those circumstances is completely normal and acceptable he’s in the wrong job as well. I also wonder what his definition of suicide is. I got mine from the dictionary. This is why changes aren’t made and why this is allowed to continue happening to people on here that we hear about every day. Officially my dad’s death will be recorded as cancer and there’s nothing I can do about it. I’m beyond gutted. I’m absolutely empty. I can’t believe it.     XXx

Hi migi sorry things are going like they are, I'm curious about those two consultants if they weren't there with your father how can they know what happened, only the people actually there know i hope you can get something sorted for your own peace of mind can your solicitor help at all.. Billy 

Hi there, 

It’s because the one consultant oversaw his care when he first went in to one end of the ward (saw dad once while he was sleeping-I’m not even joking) then when he was moved to a private room at the other end of the ward a different consultant saw him (once for about five minutes)so although they weren’t there they were responsible for over seeing his care. This is what I’ve bern told anyway because I asked the same question. 

My solicitor dropped my case this morning because the value of the claim is nowhere near how much it would cost to get it to court so it’s not cost effective. I was upset but I understand that. I have got another solicitor now who’s explained to me what I need to do so I’m writing letters as I type here. 

I emailed the sun newspaper in temper earlier and they’ve replied wanting to hear my dad’s Story but someone said to me then that if i splash it across the newspapers I’ll ruin the chances of a proper investigation so I am so stuck on what to do. Thank you though, I am a mess today. Xxxx

Hi there ..

There's one huge question I can't understand .. from his ruling .. as long as someone has terminal cancer then they can end their own life whenever ... which I'm sure it's the oposit in reality ... as loved ones can face court if they aid .. so surly that contradicts his ruling ..

Like you said .. it's probly not uncommon .. and will carry on .. because the system is geared to not change .. catch 22 ...  but you should still be proud of your self .. imagine those who have no one close .. at least he knew so much love was right by him .. and that's what we all hope for .. a hand to hold ..

Whatever happens look after you .. be kind to you .. your one of those angels that are sent here to help .. and you have done that .I'm so proud to have known you .... sending you a vertual hug... Chrissie x

Christie, exactly. The nurse was freaking out accusing my mum of taking his mask off him and for a while there Mum said she thought she was being accused of finishing him off and imagined police being called but I did think the same thing for a few seconds too. That would have been murder I’m guessing. I doubt they’d have said oh well he was dying anyway who cares what they did?! I said to the coroners assistant if my dad had jumped in front of a bus to kill himself because he couldn’t handle the pain would that not be suicide then? Would it still be the cancer that killed him because he was terminal anyway.  But he said he couldn’t comment. I said the same to the consultant. She said it was the same as if a terminally I’ll patient refuses antibiotics knowingly that the infection would kill them. She said it’s would knowingly cause their death but you still can’t call it suicide but I’m only calling it suicide because that she what dad said he was going to do and then he did it, right in front of me!  It seems like they don’t want to admit the fact that dad did that while in their care and they don’t have to. I know it’s hard to get to grips with, im still trying. Xxxxxxx

My husband refused all medication in the hospital because he said what they were giving him was doing no good. Thats when he discharged himself. Gave up because of the pain. We had to borrow a wheelchair to get him to the car. I think this happens a lot more then the NHS will ever admit bcause its much easier to brush it all under the carpet. Especially when the patient ( not human being just patient) sorry for the sarcasm Just me being angry but especially when they have a terminal illness. Just costing money and precious time was the impression I and my family had. As I did not document anything just relying on my memories for what happened I feel its a waste of time complaining, But I am glad you are doing everything you can. And I am sure all on here will support you in whatever decision you make as regards the media. I personally think that would be the best wqay to go as everything gets into gray areas with attorneys. But you have my support whatever you decide. I am sorry this happened to you but unfortunately I think it may be happening to a lot of people, who don't have anyone to make a fuss about them and that is just so sad. xx

Hi Betty, 

I know and you are so right. I know you’re still angry and I am angry too. I know this must be happening up and down the country so much more often than we realize just from talking here. Your husband sort of did what my dad did in a way and it’s so life destroying for the people left behind. It’s hard to watch someone you love suffer like that and then the way they try to brush it under the carpet hurts so so much more because it just a denial that it happened when you know it happened because you were there and experienced all the pain yourself. It’s so mean and cruel of them and they really just don’t give a damn. They really don’t. But I care Betty and I know how you feel I think and I am trying to work out what ru do. It’s very hard to know what to do. Xxxxxx

It is more then frustrating . I spent a few months not looking at my husbands records and trying to forget the awful things that happened even prior to his death. I hate cancer but when Drs tell your  Dad or told my husband he would not suffer, Ted my husband was so disbelieving  and I'm sure afraid when he did suffer in agony. Not just the pain but  the whole system including the awfull nurses Sorry but I'm too disillusioned to say angels that I keep hearing nurses being called. That just annoys me now. We were at the stage we were happy to find a nurse who was just polite.  I see ads on TV saying how wonderful this charity and that charity was. Well where the hell were they when your Dad and my husband needed them?. The whole thing seems like some sort of sick joke. Please take care of yourself, especially the next few months, Your a great person and your family also need you. xx Whatever you decide to do will be right, even if it means doing nothing it is fine. do what you need you are important too. xx

Betty 

Betty I think we are all feeling the same way. My dad was in agony and suffered so much. The hassle just getting basic things he needed was so bad. He suffered the whole way through and I get mad when I hear people saying there’s no reason to be in pain they should be kept pain free etc... because in lots of cases the people are in absolute agony and no one listens or helps. We actually called the doctor a few times because dad was in pain and he said oh I don’t think you need more pain killers just yet! Bearing in mind my dad was a fighter and never complained unless he had to. I feel the same way about it being some kind of sick joke. Thats actually how I really do feel today. It just makes no sense to me all of this. I’m trying to write a letter and structure it like the solicitor told me to but it’s so long and there are so many questions (and this is just about the last 8 hours of his life) but I’ve done nearly half of my rough copy. I’ll finish the rest tomorrow then I’ll get my daughter to check ITV before I write the copy to send. I had a call from the call bereavement office today asking me that’s as the coroner was happy with things could I come in and register dad’s death. I said no I’m unable to do that. It’s a legal document which i am telling you contains completely incorrect information and I cannot put my name to a document knowing this it’s immoral and probably illegal and I’m not happy to lie. I told her she’d have to find someone else to do it. So a little while later the coroners assistant rang me and said the hospital had reported me for refusing to register dad’s death and I told him the same thing. I’m not refusing to register his death just that it’s a legal document which is false and I can’t put my name to it or have anything to do  with it knowing what I know and what I have reported. It’s not something i can do. So he said he understood but i don’t know what they’ll do to me now, but whatever they do it won’t because anything compared to what we went through when dad actually died. I just feel so hopeless. My mums life is ruined she’s been sobbing today, your life is so painful now because of what happened to Ted. I’m quite strong but it’s a difficult situation and wrong. Xxxxxxxxxxxx

Good for you. You have great integrity and are completely right. Your also very brave.  I really hope there is something good to come out of this horror, because thats what it is for us remembering. Its impossible to get the awful images out of my brain. I know very well people keep saying try and remember the good and that is correct  I suppose but I still feel guilty,  have no idea why amazing how we blame ourselves for others wrongdoing. Something good will come from this I know. Good luck. xxx

Betty

Hello everyone, 

well I have half broken down today. Not completely but a bit. I’ve still got my make up on and I’m outside the hospital where my dad is because my daughter is studying here and she’s having her vaccines. 

I couldn’t sleep last night, I’ve got a headache I feel sick and I’m fed up. I keep bursting into tears and it’s not my dad it’s the stress of it all. I’m supposed to start uni myself soon so I’ve emailed to ask for extra support to get started and I’ve got documents in my bag to post to finalize my student finance application.  My mother has gone even more mental. She was sobbing yesterday and it’s all about the guilt she feels for letting him be in so much pain he did that to himself. It’s like [@Brien]‍ said it’s amazing how we blame ourselves for doing our best but being failed by so called professionals. And just like you said I’m tellling her she’s not to blame and to think of all the good things she did for him and how well she did but that’s not what is staying with her it’s the horror and the images of what she saw, which were now told didn’t happen. It’s early days for us but I know it will still be on our minds probably forever like Betty. It’s not something you can accept it’s too big for our brain to cope with I think. I accepted bereavement support but that was when I thought it was straight forward what dad had done. Now I don’t know what ri say to them because My account of what I went through officially didn’t happen so I don’t feel I can talk about it with them as they are part of the cover up. I’m just confused today. I am glad you’re all here to stop me going insane with this. Xxxxxxxxxxxx