Writing everything down saved time and ultimately the day!

[Paul_and_Sue_Wood]

I know I extol the virtues of writing everything down and watching my wife like a hawk, but doing so paid off this weekend.

Friday evening Sue says she has a tight chest, so I do my checks, no wheezing, no coughing, the temperature is normal, pulse within parameters, Oxygen 95% so all is looking OK, so we assume indigestion?

Saturday lunchtime chest still sore, but other parameters seem normal, she says she feels wheezy in her chest so my alarm bells say Antibiotics now, so I do as we have the emergency doses.

Evening the chest is now painful and it is going around the back, so final checks I see pulse now mid 90's temp and temperature is also above normal so 111, 20 minutes no answer " sorry we are experiencing high demand" so 999.

10 minutes later ambulance crew arrives and after checks, they want to take sue to the hospital to ensure her heart is OK. I cant go..... aaaahhhhhhhh.

So my plan now comes into play, I give the crew Sue Respect forms along with a full list of meds, symptoms and medical history, along with my contact numbers saying call me to learn more.

No call Saturday night!!!!!!

I ring at 5 am Sunday and chat to the doctor directly

"Sorry I didn't call Mr Wood but your notes were so comprehensive I didn't need to, you saved me hours of time investigating her condition when I could hone in on the immediate issue, I wished all would do this It would save me so much work, thank you."

Tuesday lunchtime Sue is back home and it was Aspiration Chest Infection.

[Hellebelle]

Hi Paul and Sue, first of all, I am so pleased that Sue is home. I was only saying a few days ago how lucky we were to be allowed to accompany dad whenever he needed to go into hospital. We used to go armed with fluid thickener and all he might need as well as being able to communicate information about MSA. It was hugely reassuring for us all that we were able to do this.

Your diligence has paid off in these strange times when you aren't allowed to do this and you know that many medical staff will never have heard of MSA. You are left unsure about the level of care your loved one will receive.

My husband is a type 1 diabetic and this has pushed me to do the same for him. He becomes unable to communicate if his blood sugar is seriously effected. We are in a new world now because of the Coronavirus restrictions as your experience shows.

Thank you for sharing and my best wishes to you both ❤ xxxx

[Paul_and_Sue_Wood in reply to Hellebelle]

Hi Hellebelle

Thanks for your reply and keep strong and well.

Paul

[Helenhooter]

PaulWell done, I think we should all learn from this. I'm glad Sue is ok.

Best wishes to you both

Helen

😊xxx

[Annietutt]

That is brilliant. Great to hear. Well done. Obviously not great that Sue was so unwell, but glad she is home now.

[chester2107]

glad she is ok and brilliant you had all of those notes and you never know what doctor you are going to get , they may not know much about the condition it’s a battle

love elaine xx

[Courgettegrower]

So glad to hear that Sue is better, we missed you both on Wednesday. Trouble is I now feel very inadequate I’m very unprepared if this sort of thing happens to Ian although I am pursuing the respect form from the meeting in October.

[Primitivepotter]

Well done you…. Can you tell me what is a Respect form - Paul is about to go to hospital and I have been preparing extensive notes on his care needs. Good to know Doctors actually read this because when the speech is impaired and partners are not allowed in things could become a bit iffy

[Paul_and_Sue_Wood in reply to Primitivepotter]

Hi

A respect form is more commonly known as a DNR for ( do not resuscitate) but is more comprehensive.

It takes into account the sufferer's wishes for end-of-life decisions based on various scenarios.

It is done with a healthcare professional and indicates their wishes to doctors.

If you want to know more talk to MSA trust.

Hope that helps.

Paul

[Diane831]

So glad that Sue is home. My notes for Geoff were slightly less comprehensive as it was pre Covid, but what I did provide made lots of difference in the times that I wasn’t at hospital with him.

So a vote for comprehensive written notes of the actual situation and needs that can be given to ambulance staff, Drs and nursing staff with very clear phone numbers for getting more information.

Well done Paul and every good wish for Sue’s recovery from this little blip. Diane

[Kaye31]

Wow! What an update glad sue is home xxI’m going to prepare my sheets. How do you separate them?

[Paul_and_Sue_Wood]

I do a full list of meds on one sheet.Then I have written down all the different symptoms one by one and this then springs to mind the issues so I can add to the notes.

It will be easy when you start.

Don't hold anything back, but be precise.

Paul

[Precious68]

That is such a good thing Paul.

Glad Sue is home and your diligence has helped it happen so quickly. I do know that, with the best possible motives, the hospitals want to keep hold of our loved ones as the condition can be so dramatic. They don’t always understand that you know how to care for sue better than they do.

So pleased Sue is home.

Keep up good work.