AIBU- To want a record of a discharge meeting?


I would be grateful for your thoughts.I have been asked to participate in a discharge meeting about my father - with representatives from the hospital and CCG. Some really important issues will be discussed including Continuing Health Care Funding etc . With social distancing they want to hold the meeting remotely through an application called Microsoft Teams (a bit like FaceTime or Skype). I am a bit concerned that this will mean I won’t have a record of the meeting , of what is discussed and agreed, but they will.

Why does this matter? We have had a lot of problems with them agreeing one thing and then either not doing it and/or or denying they agreed to do it. At the last meeting we had in January, for example, it was agreed that I would be sent a copy of minutes of the meeting. This has simply never happened - despite lots of chasing. When I have completed my own minutes of what was agreed they have simply refused to recognise them. I have also take to tape recording meetings/phonecalls (letting g people know I am doing this from the outset )but the CCG have objected to this and said it is not legal without their permission. I don’t agree with this interpretation.

Ideally I think the meeting would be done by phone so I can record it (and then share with other family members who cant attend/are elderly and unable to use the internet). Am I being unreasonable? How do other people go about recording key meetings/decisions? Thank you once again for all your advice and sharing your experience. I hope you are all keeping as well and safe as you can.

You can record Microsoft teams meetings and they should give you a copy of this for you to refer to after the meeting.

I attended a complaints meeting and it was recorded, similar to the Police tape recorders you see, but digital I was given a copy of the meeting.

Have you contacted PALs? have you gone through complaints? I was assigned a complaints lady to help through the process.

You can get an advocate through NHS complaints to help and support you, they can advice about your rights recording.

Healthwatch can advise as well, it is worth contacting them about your continual issues with the NHS.

Faye, it’s perfectly reasonable, you can’t trust them an inch. Insist it is held in a way it can be recorded.

Info on recording Teams meeting and automatic transcription. Apparently, users need to have permissions set in the Teams meeting program (by meeting host???) in order to record.

I have never used that program for video meetings.

Do you plan on using your cell phone? Wishing you well. XXX


Londonbound’s suggestion of contacting PALS ( Patient Liaison Service) is a good one. You can find their contact for your Hospital through the web.
PALS have always been extremely helpful to me AND very prompt in replying. Suggest you give it a try. Hope you get on well.

I have never recorded a teams meeting but have recorded a discharge meeting on my phone. I would also suggest taking your own minutes and sending them afterwards by email, asking for any amendments etc. A written record is always good and could be taken to a solicitor after the event if necessary.

Good luck,

I’m glad that Amble found their PALS people very helpful. My experience was anything but helpful. They were sarcastic and unhelpful. I’m trying to be polite. I suppose it’s another postcode lottery!

Hi Faye,

Unfortunately, as with any service provider, you get ‘good ones and bad ones’!

But PALS is the place you need to start, then if you do not get any action/resolution from them, you can make a complaint to NHS England or your local CCG.

If you are not already doing this, then I highly recommend starting a record sheet or database, with details of all phone calls, meetings etc. even if they are not formally recorded. It is so much easier to refer to that when writing a letter of complaint which provides the exact details you want them to take action on. Just recording day, date, time, who was involved and an outline of what was discussed and most important, any outcomes or actions and who was responsible for completing them.

Here are a couple of useful links about PALS and making a complaint about the NHS. I hope you get this resolved Faye.

I have repeatedly had problems relating to discharges and PALS I’m afraid.
Sadly, Faye has had the most dreadful experiences trying to support her dad.

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

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.

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

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?

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.