AIBU- To want a record of a discharge meeting?

[Rosemary_1706]

Hi Faye, As I recall, it's been a while since your father was evaluated and an initial CHC plan put in place. How's your father now? It would be important to discuss any deterioration at the meeting so as to get the most appropriate care, including hospice care.

Wishing you all the best at your video meeting. Rosemary xx

[Faye_1506]

Thank you all for your helpful responses. In the end the organiser of the meeting wouldn’t let us record it but our solicitor agreed to participate and do a record. Hopefully that will be enough.

I am still trying to get my father discharged home to live with me so he can die surrounded by family and friends. He has been in hospital since early December. We were told in january that he only had a few months to live. Then he caught the coronavirus whilst an inpatient. He has now finally been declared negative and medically fit for discharge. The hospital and CCG want him to go to a care home but I wouldn’t be allowed to visit him even though he’s dying. That would break my heart and he would be so hurt (not understanding what is going on) so we are fighting to get him to be allowed to live with me. It’s exhausting - I just don’t know why they are so difficult- I’ve found it amazing how rude and agressive some of the staff can be. If you don’t agree with everything they say , no matter how polite you are they can turn really nasty and as a carer and on my own I feel so vulnerable. It’s so different to the impression you get from the media., I assume ultimately it’s all about money but sometimes the way they speak to you and comments they make Is just unbelievable,

I am very grateful to everyone on the forum who has given their support and advice. I am also very sorry for all the difficult experiences that other carers seem to be enduring. It’s just so unfair and just not right that those trying their hardest to do the right thing are not more supported. I’m sorry for those having difficult times and just wish something could be done. Do take care of yourselves.

[Rosemary_1706]

Hi Faye, All too often the NHS system treats carers and family as unwanted hindrances and do their very best to ignore them.

Thank you for sharing. I was wondering how you'd got on. What are the next steps in getting your father home?

Rosemary xxx

[Faye_1506]

Rosemary- Thank you for your support.

I’m not really sure what the next steps are. The OTs have been out and undertaken an assessment as to whether my home is suitable for my father to live in. We are waiting on their report and proposals from the CCG about what care he may need. I am extremely anxious about it all. Last year , after his arm was broken by patient transport, it took around six months for him to be discharged. Given his prognosis I am hoping it will be quicker this time but am worried they will be deliberately slow again. I am not sure why they take so long as keeping him in a hospital bed is so much more expensive than him being at home but I think possibly because it comes from different budgets?- who knows??

I had also hoped that because he was accepted for Fast Track CHC it might speed things up a little but so far that hasn’t been the case. What is so disappointing is that there is simply no one you can turn to for help or to complain to when the system doesn’t work as it should. PALs aren’t responding, The hospital Complaints Process and PHSO are suspended because of Covid. I have no idea who you complain to about the CCG taking so long/not adhering to guidance (which is especially frustrating when we have to stick to the rules but they dont) -they seem to be entirely unelected and unaccountable. It’s very Kafkaesque! All utterly exhausting at a time when you just don’t need it. Being a carer is not much fun is it?

[Joshua_2007]

I suppose the best thing to do is have something important in writing or in an email. We should never take something at face value. We should have some sort of proof of something that was said if it is important.