All aboard the Seafour tour bus #2

[Seafour]

A new thread for us

Old thread in HDU with respiratory failure and terrified

@Seafour am I right in that your care is fully CHC funded? The person who is managing your care is the point of contact. If you don’t have a name, you can liaise with the CHC department in your local CCG? Are you having an increase in your personal health budget? They should be able to guide you on wher to find either an agency or an individual.

Hi sea

I'm so sorry that your having such a hard time. Did they remove your central line?

Afraid I've nothing useful to add - just hoping and praying you're ok.

listen to schulyer, ask anyone you feel is pressuring you to discuss your complex discharge needs with whoever funds your homecare. I understand you are desperate but don't ask strangers online to cover shifts.

'Nobody woke me for my 6:00am medication - all of my meds are time critical'

Please dont worry about stuff like this, sleep is so very important not many meds are that time critical that an hour will matter. Perhaps the nurse thought you needed your rest more.

Sorry to hear you are still having to fight your corner, but very glad you, your DH and the fabPa are on the ball enough to be able too.

Crossing everything that you can get home and safe as soon as possible.

Anyone for a satsuma or 3, I stocked up so of course my children have promptly gone off them.

Thinking about it, I’m actually quite disgusted at your hospital. In all my years, I’ve never heard of any patient - let alone one with needs as complex as yours - pressured to arrange their own discharge. The responsibility relies solely with social care or CHC. The only time hospitals have “encouraged” patients to leave is when they absolutely refuse, despite there being care at home or in a care home or rehab or whatever. This is quite unusual and if it does happen, it’ll still be the social worker who gets it in the neck and told to persuade the person to please vacate the bed. That said, it’s what we are paid for, so it’s not an issue.

Does your hospital have a discharge co-ordinator? They can liaise with CHC on your behalf.

'Thinking about it, I’m actually quite disgusted at your hospital. In all my years, I’ve never heard of any patient - let alone one with needs as complex as yours - pressured to arrange their own discharge.'

Yes there seems to have been a total breakdown in communication that a patient with complex medical needs has resorted to asking people on the internet for home care. I've never known anything like it. I hope you are feeling better op

@Puzzledandpissedoff Thank you for hunting me down, it would be marvellous if you could pm me and I can pick you're brains away from the main board.

How you doing now the central line's out Sea?

@Schuyler thank you so much for your message, I manage my own budget and have funds to cover the increase in care. All of the agencies they recommended have awful CQC reports and I've had my share of shit carers in the past to make me not even consider them unfortunately. I won't go down the route of getting "just anyone" in, quite frankly I deserve better than that.

I employ fabulous PA directly and top up the pathetic amount she gets from my savings, she deserves twice that amount easily, she works so hard and is responsible for keeping me alive and having a life rather than just existing and living in fear.

@Seafour have just PM'd you ...

@ChanelPlease * Thanks for your message, I have at no point asked strangers online to cover shifts. I have asked for helpful input like the message from puzzledandpissedoff who lives in the same county as me and has local knowledge. My reply to Schuyler* speaks for itself, without high quality care I am at huge risk.
As for my drugs, it took about 8 years for my pain team to come up with a combination of drugs and critical timings to stop the agonising foot and leg spasms that have dogged my life since 2010. One missed or late dose has an impact on the next 24 hours. So every dose is time critical to the minute when I'm at home an hour is too long, I don't post everything that happens on here. But thank you for your concern and your input.

This is a great site for recruiting PAs.
papool.co.uk/

Also with regards to time critical, I think it means different things to professionals and to patients. As someone who has complex health issues, I do understand. In the medical world, your medication can wait but I understand when you are waiting, it doesn’t feel like that.

Home Instead is a reputable agency. Not sure if they cover your exact area but often, if you speak to them, they do find carers who can move into slightly different areas.
www.homeinstead.co.uk

Apologies op, when you said 'I ideally need someone who can live in for six to eight weeks and cover 8pm to 11pm , wake once to help turn me and 6am to 8am for help with turning, meds and breakfast. I'm in Derbyshire.' it sounded like you wanted applicants rather than agency recommendations, sorry again.

I totally get what you mean re meds and waiting for pain relief is unacceptable I'm just wondering whether as you were asleep the nurse probably made a judgement call as sleep is so important. As long as you clarify they must wake you to give pain meds they will know for nest time? Best wishes, hope you're feeling better.

Next time*

This is brilliant papool and Homeinstead are two agencies PA hasn't tried and thanks to other info ive been sent we have one lady going for an interview tomorrow and one agency who say they can cover the next six weeks.

Thank you you are all fabulous, sorry for the bold fails earlier but it might be fine at your end!!

I did speak to my CHC manager this afternoon and she goes on Christmas leave tomorrow, back on the 2/1/19 so she just sent me the same information for the same companies that made me self manage my fund in the first place. It's hugely frustrating and because of where I live we fall between four different LA's but they will only use companies in one LA, by self managing it gives me flexibility to search nationwide.

My central line is still in despite the PCA being turned off at 2pm, the nurse was waiting for a doctor to come and cannulate me as is their protocol but when the consultant did his rounds at six he said, "just take it out" I'm still waiting

No I'm not, it's out and my 7yr old dgs will be delighted that I've kept it, it can go and live on the shelf of curiosities at home. I'm certain Fabulous PA will look forward to cleaning it or maybe she will delegate it to her number two when she's appointed

Hey Sea so sorry you’re having a rough time. It shouldn’t be like this.

Sending loads of sparkly healing vibes ✨

Sorry, I did mean to say earlier that my post did come across a little desperate, most unlike me but I was panicking at the thought of Christmas in here.

For anyone squeamish looks away now

Anyone fancy hanging this on the Christmas Tree 🎄

That's impressive hardware!

You're allowed to sound panicky an a bit desperate Seafour, hopefully, the pm's you got from various people will give you a way home!

My DS had one of them!

I hope you get sorted to be home for Christmas. Keeping everything crossed for you.

There were good bits today too,

Fabulous and dh had hoist training

I walked to the end of the bay with my right arm strapped to my crutch using a marvellous quad glove that allows me to grip
my AFO foot & leg splints and the new body brace. I don't think any of them will catch on as fashion accessories but I don't care

Bowel irrigation was done on the commode

I wore knickers for the first time

Tomorrow I can have a shower and wash my hair

The next challenge is a standing X-ray tomorrow afternoon

That sounds positive. :) If you can weight bear, would a rota stand or similar be helpful?