I'm not a great fan of PALS to be honest, following family and professional experience, unlike their predecessors they aren't fully independent as they are employed by the hospital they work for. 

The CEO will refer the matter to PALS but if the complaint goes direct to him or her they can't claim at a later stage that they were unaware. 

I understand this is probably the very last thing you want to think about at this harrowing time.

Best wishes

Dave

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 Dave, 

you are so right. I read your message to Brien and yes. There are huge failings already in dads care and I'm so glad I posted here. ( I'm pretty quiet normally, I don't do social media or get involved with anything that is confrontational) but I agree that by making valid complaints and raising awareness it could save other people from this awful nightmare. As soon as I have dealt with dad I'll do it I just don't have the energy right now and to be truthful I'm scared that if I start making complaints now while he's alive they will all know and be resentful towards us and think of us as trouble makers and when they do come into contact with dad they might be worse to him. It doesn't help that I think my parents are autistic. My mum has mental health issues with anxiety and agoraphobia but I've done a lot of research lately and I am 100% sure they are both somehow autistic. They don't know. My mum says she's weird but doesn't know what's wrong with her and her "weirdness" is magnified under this amount of stress. I only worked it out recently and I'm so glad I did. I've always had a difficult relationship with them because we don't understand each other and I could never work out how they couldn't under stand simple things that were explained to them repeatedly (they aren't stupid, they're both pretty intelligent especially my dad). Now I understand what's wrong with them it's made things good and I've let go of the massive resentment I had for them because they just don't understand. My mums "weirdness" is difficult, I try to explain she has mental health problems when she's talking to the doctors etc... Because she doesn't get it a lot of the time. Like last night I wouldn't let her on the ambulance because she said things like well if it's just a panic attack bring him back into the house now please. It sounded rude and she was hindering things and just not grasping it and that's what she's like and she would be mortified to think she had gotten people's backs up or even irritated them, but there's not even anyone to explain that only me!! And I'm not a mental health care expert. It's just hard. Nothing follows, it's all completely disjointed. Even down to the fact that the number the ward gave her if she was concerned about dad at all can only be used 9-5, and this started at 5.30 on a Friday. I'm so sorry for waffling but basically what I meant was I'm going to make a complaint. 

Xxxxx

I meant to say as well that the air ambulance doctor last night said dad had to see his own doctor on Monday and mentioned he may need a syringe driver and a "just in case" box. I've only just started googling this so not sure about it yet. 

Xxxxx

Something strange happened last night too. Dad was sat on the chair in absolute agony, extremely distressed and he said "I can't stay. I've got to go home". Mum said "you are home." I don't know if he was delusional because of the pain but it was strange. Xxxxx

Is he on morphine? My wife was away with the fairies whilst on Oromorph and hallucinated quite a bit. 

Hi Tracy,

People often describe it as a rollercoaster ride of emotions. Sadly for some people it can feel like there is no upside, especially when diagnosis is late and the prognosis is poor.

Your message reminds me strongly of why we campaign to try to improve things and why I get so cross when government ministers and cancer experts at conferences seem so smug and complacent about the current state of affairs.

Best wishes

Dave

Hi Dave, 

I'd heard of autism because of the fuss re the MMR vaccine twenty years ago with my eldest two and I always thought of it as a childhood thing which is so silly of me because obviously children grow into adults. The penny dropped very recently and makes sense now. Like yesterday, my daughter and I walked in and immediately knew dad really was not well at all but mum seemed oblivious and sort of almost ignored the fact that he was hunched over obviously suffering. She adores him, there's no way she would want him to suffer but she didn't pick up on it and it was blatant. I took my girls home and when I came back she had called an ambulance but he had told her to. But when dad WANTS an ambulance it means he NEEDED one at least an hour before if you see what I mean. 

Yes he's on Oromorph-10 Mls every hour and 30 mg of Morphine every 12 hours (they increased the morphine last night). I thought he was handling the pain killers quite well but he was slurring a lot the last two days. We thought he'd overdosed on the oromorph but in fact he had taken a bit less. He can have it every hour if he needs it and hadn't felt like he needed it but then look what happened! I think he was away with the faries at certain points last night but generally seems ok on that front. 

I've got to be honest I am absolutely shocked with the state of things with this. Its like I said, I feel like there are no positives. I know nothing about the politics re cancer treatments etc... But if the government thinks this is ok it's really not. Maybe they mostly have private health care so don't understand what it's really like. It seems like they're out of touch with normal people with lots of things. 

Xxxxxxx