I have to agree with you, the government are totally out of touch with the healt service, it's terrible. I have so many horror stories over the last six months regarding hospital care if I still had not kept documentation people would not believe me. At one point my poor husband had a tube inserted into his lungs instead of his stomach, despite him begging the nurse to take him downstairs to the A & E so someone who knew what they were doing could do it. It was discovered next morning by the encologist. I did complain To PALS and  the hospital even informed the police there was a police report about this. In the end despite there being a former chaplain as witness nothing was done it was the nurses word against my husbands. So thats another reason I did not want to complain about his awful treatment , its so horrendous and disheartening. Sorry for going on but that was the one and only time in my life I had ever made a complaint. All you can do is look after yourself and your family the best way you can. Thinking of you. 

Betty

[@Brien]‍ 

Hi, 

Thank you so much. It breaks my heart reading that. I just feel for you. Three weeks ago tomorrow we started this "journey" as they say. Already it's a mess. I feel so bad posting here in a way because I'm a really positive happy person, we do a lot of mindfulness etc at home, we're happy go lucky and always counting our blessings etc but I can't find any positives in this. This is an absolute nightmare and my poor dad. It's like we are having a harsh dose of the reality that's on the news all the time about the failings of the NHS. My dads going to die soon I know he is and I am just so gutted. I've cried so much my eyes are swollen. My mums just not getting a grip on it all, I can't go back to work because suddenly I'm taking care of them both, but I have to go back to work only I really really can't. She's already messed up his medication twice. I had to step in again and make her tell the doctor she'd made a mistake otherwise dad would have been on 100 mg of morphine a day and he's already off his head because of her mistake which meant they already doubled it and he didn't need it, she almost had them treble it. I just don't know what to do. They had a falling out all day because mum booked a home visit but dad didn't want her to. All day they were bickering and dad was really upset. I turned up at 1, I asked him what he wanted and he told me he was fed up, he'd seen enough doctors he didn't want to see one today. I asked him if he wanted me to cancel the visit and he said yes. So I did. He said to me "Thank you for rescuing me." He was happy then, but all day stressed out over it, he didnt trust her to not let them send him back to hospital for some reason and I don't blame him. If his meds had been tripled he would have been back in because he'd have collapsed on all that morphine. It's not her fault though, she worships the ground he walks on she just seems to create these problems all the time so I have to over see it all. He's asked me to take him for his biopsy tomorrow so we're off to do that, mum will come too but I know he feels better when I'm there. I've said mum has mental health struggles, but no one has offered her any support with dad over this. She's been misdiagnosed because like I've said before she's autistic, they both are. But the NHS is just as bad when it comes to mental health. That's another minefield where nobody knows anything and they just throw buckets of medication at you and leave you to it. I am being so negative! I'm going to try to go back to sleep. I'm constantly waiting for my phone to ring, I know my parents will be awake now because they're hardly sleeping. Dads scared to sleep in case he doesn't wake up. He'll fall asleep on the sofa he won't even go to bed now so mum is catching a little bit of sleep on the other sofa. They're permanently dressed just in case, it's just so so sad. 

I'm sorry I'm venting and not saying anything helpful to anyone. Maybe it's just a phase you go through with it all. 

. Love to everyone. Xxxxxx

Just wanted to let you know I am thinking of you. You will be Ok, you are doing all you can and thats all any of us can do.  I now feel guilty now and then thinking I should have done this or that, but I know deep down that we are human beings jusst doing our best for the people we love. 

Betty

Hi Betty, 

You shouldn't feel guilty. My mum is like that already with my dad. We've had trouble right from the start of his diagnosis, everything from nasty nurses etc.. She blames herself every time she can't get him what we think he needs and it's not her fault, the system is just impossible. I know she'll have the guilt thing when he goes but honestly we just like you are doing our absolute best that we can given the huge obstacles. Dad is hunched over now. His neck is stuck forward like his chin is in his chest. He's in so much pain but it's biopsy day today so we are hoping someone will be able to do something. It's almost as if he needs to be stretched out, I was teasing him yesterday that if he didn't lay on the floor and do a bit of stretching I'd peg him on the line for twenty minutes to shake him out! I don't even know if this biopsy is worth it. He doesn't look to me as if he can cope with one day of chemo let alone the full course. He's deteriorated so much. I'm so annoyed they made him wait three weeks, not forgetting it's ten days until the results come. It's too long. But hey. I'll let you know how we get on, I'm picking him up at 12 for the appointment at 1 so fingers crossed. It's breaking my heart seeing him like this, he was always so strong, but he's so skinny and his bones are showing on his face. This disease is cruel. I never in a million years could have imagined this, I feel so sorry for everyone who ever has had anything to do with it. I really do and I think we all just cope and do the best we can. Like you said it's all we can do but it's so sad and so frustrating. 

Take care Betty. Have a lovely day, keep warm! It's so cold out there!!! Xxxxxxx

Not sure if you know but your Dad is entitled to an allowance each week its only 85 pounds but its not means tested or anything. He is also entitled to a disabled sticker which you can use driving him to hospital appointments or anywhere for that matter.  It is a long time for you to wait for an appointment especially cancer. Just the waiting itself is stressfull. At the very least they should be giving your Dad some painkillers that actually work. I'm so sorry for what you are going through.

Take Care

Betty x

Hi Betty, 

He's got pain killers but still in so much pain. The community nurse is coming tomorrow with a doctor so hopefully will sort that out then if not today at the hospital. 

Mum and dad gave up work a couple of years ago. Mum had a breakdown then dad had to stay home to look out for her. They get basic benefits but it's not a lot, I know they struggle a bit. They don't like making a fuss and I don't think they know what they're entitled to. I do say but they're autistic so they panic too much about everything and me saying doesn't help. What is the £85? Do you know how to apply for it? I know when I popped into the Macmillan advice centre at the hospital they gave me a form to give mum to apply for a grant of £400. The doctor filled it out for her but she hasn't heard anything yet and I'm pretty sure that's a one off. My parents just freeze when it comes to forms and phone calls so I'm going to have to do it for them. In ten days we will have a definite answer to some of our questions and will know what if any treatment is available for him. But it's definitely bad and definitely terminal so he should qualify for some of these things for sure. Thanks so much for letting me know about those things Betty, have a good day. 

Xxxxxxxxxx

The 85 pound is paid weekly and is not means tested. It is given to anyone diagnosed with terminal cancer. They do not backdate this so apply ASAP. Call the MacMillan nurses sent me the form, it was very difficult to fill in, so they did help.I gather most people need help with it.  Hope your day is not too bad. Betty xxx

Hi, 

I can't believe it. The palliative care doctor and nurse came out to see my dad today for the first time. They were lovely and we discussed many things including dads anxiety and sleeping problems. The doctor said he could have two lots of meds which would help him a great deal. She said that GPs don't really like to do it as a long term thing but for 4 or 5 days to try to calm dad down and get him sleeping again it would be perfect. She said she would speak with dads GP and have the prescription ready today. So mum called the surgery this evening as she was told to do to find out if it was ready to collect only to be told that the GP has refused to do it. How can that be allowed to happen? It makes absolutely no sense to me and I am gutted. We waited three weeks for the palliative team to come out and now dad can't even have what they said he needed. I honestly honestly cannot get to grips with this whole situation. I feel like I should be jumping up and down making complaints but the amount of things that have been appalling is just incredible. I wouldn't even know where to start. I am so sad tonight. Mums in pieces. I feel and am so powerless to help him. I'm blaming myself for not being able to come up with ideas and solutions to get help for him, but it's like walking in quicksand. It's hard to get anywhere. 

I absolutely despair at this whole thing, I really do. 

Xxxxx

OMG - time to call in another GP, and demand to know from the practice’s senior partner what the h3ll this fool is playing at. Turn up in person and politely refuse to leave until you get the outcome you need. They hate having patients loudly complaining in the waiting room or reception.

Maybe contact your CCG and local news to explain the situation and ask why your Dad is being put through so much suffering.

I really feel for you and your Dad - this sort of behaviour by GPs makes my blood boil. 

Best wishes

Dave