Nnot a good daybadly let down...

[Polesden11]

I was admitted to hospital inn Carlisle last Saturday with a blocked bowel and have since acquired a chest infection. Lovely 🎁 wouldn't you agree. 8 days later every time I breath in I feel as if a knife is turning in my back but apparently I don't need any more antibiotics. No improvement on the blocked bowel ...no surprise there as despite requests no action has been taken to sort out that problem.This arvo I was told I was being moved to aa hospital in Whitehaven later that afternoon that's 1.5hrs between the two hospital plus loading and unloading Yr looking easily 2hrs travel... I was quite happy to do that as its closer to my home.

BUT when the ambo still hadn't arrived by 1.30am I elected to stay here. Its no one's fault they were just trying to beat the Ambo strike tomorrow.

So I'm gonna have to fight tomorrow to gat infection and blockage sorted and all while I've had no sleep. Think ill call my GP and let her fight the battle. If my husband were not deaf he would have been onto this days ago as it is he can do nothing except sit in bed and get more frustrated so this is affecting not 1 sick person but 2. I just hope Den hasn't told the dog 😕 😔 😪!!

Has anyone else had similar troubles or am I just useless at dealing with authoritarian figures as Den has always fought my battles?

Sue x

[Gill-C]

No-one manages well with authority when they are in a position of vulnerability – tired, hungry, in pain, etc.

Today is the day you get some back up! Contact the MSA nurse as planned and have you thought about trying the hospital chaplain? I’m not religious myself, but I have always found that not to be a bar. They are usually well-informed welfare advocates. If s/he doesn’t feel able to take an ongoing supportive role for you, they will be bound to know who can.

Good luck!

[Polesden11 in reply to Gill-C]

Thanks Gill. I'm just trying to collect myself before I call!!

[Yanno in reply to Polesden11]

Hello Sue.

I love that you can see see the funny side of life despite all you are going though. I agree with Gill, talk to your MSA nurse as soon as you can. I can't recall if you have had any interaction with your local hospice. If you have get them involved as well. If not...that's the first thing to do when you get out of hospital...get a relationship wiht the hospice; they have been so helpful to Jackie over the years.

Good luck, and I hope the dog's taking the news well!

All best, Ian

[Polesden11 in reply to Yanno]

Good point Ian I really haven't taken advantage of the nurses expertise and knowledge anywhere near enoughSue x

[Paul_and_Sue_Wood]

Hi, there is support services available to help you they are called advocates. This info is from NHS site.How to get an advocate

Contact social care services at your local council and ask about advocacy services. Find your local social care services.

POhWER is a charity that helps people to be involved in decisions being made about their care. Call POhWER's support centre on 0300 456 2370 for advice.

The Advocacy People gives advocacy support. Call 0330 440 9000 for advice or text PEOPLE to 80800 and someone will get back to you.

VoiceAbility gives advocacy support. Call their helpline on 0300 303 1660 for advice or use VoiceAbility's online referral form.

Contact your local Age UK to see if they have advocates in your area. Visit Age UK online or call 0800 055 6112.

Paul

[Polesden11 in reply to Paul_and_Sue_Wood]

Had no idea of any of this Paul thank you so much.Hope my namesake is having a 'good' day🌺 ,,( huge bouquet for Sue)

[Diane831]

the hospital has a PALS (Patient Advicacy and Liaison Support) team. You should be able to ring them from you bed on their outside line which is 01228 814008

Or there should be a palliative care team within the hospital who you could ask to visit you, although that might depend on the nurses/ doctors agreeing that you need it, which they possibly won’t at the moment! They will work with the hospice team in the community and can be helpful in getting referred on to the hospice who are great for symptom control throughout the stages of your journey.

Hope that you are getting some help.

[Polesden11 in reply to Diane831]

I never thought of any of that even though I've seen that PALS notice dozens of time defo follow up on that if things backkslide but the junior doctor seems very on the ball and, what's more, has 2 dogs 🐕 so understands my obsession with Barney. Always a good thing if your doctor understands you rather than thinking I'm a complete nutcase.Sue x

[Frenchoak]

So sorry to hear that things aren't getting any easier for you 😕 😞 in there. You are NOT useless - you have serious problems on top of a very rare condition that no-one has heard of. Please start calling 📞 🙏 people who are in a position to help you. You cannot do this alone, and shouldn't have to! Call anyone and everyone who can come & help you to sort this out! PALS, MSA nurse, hospital chaplain, Ward Manager, hospice. Please be brave in asking for some help, & be assured, that's empowerment not a weakness on your part! Wish I was closer, I'd come and talk to people for you, but I'm too far away in South West!! Take that action, please don't give in to the system and let things be. Ring PALS, or ask them to come visit you (they'll be hospital based). Keep strong! 😊

[Monkeyfeet1]

I don’t have any further advice but this means you must live in the Lake District !! I hope the dog is well. Take care. X

[Polesden11 in reply to Monkeyfeet1]

Tha nks so much everyone you have no idea how it helps to have an invisible support group.Things seem to be bit up and down again.. bowels are aware if their job specification but having found out what fun it is they don't want to stop! Chest infection still a prob but at least I've convinced them to start the antibiotics, so even tho I'm back on oxygen things seem to be moving..

I suspect my Den might have had something to do with it all as the sister this morning commented that he had a very sexy voice even when he was clearly upset!!s

Thanks again everyone and keep as well as you can.

Sue xx

[Polesden11 in reply to Monkeyfeet1]

Where else cld we possibly live with a dog who thinks he's a duck!🐕‍🦺🦆🦆

[Monkeyfeet1 in reply to Polesden11]

I am very envious of you living there. Until MSA, I planned to retire there ( ps o have 5 dogs so I’m the nutter!).

[Polesden11 in reply to Monkeyfeet1]

I knew there must be another one out there. Just managed to connect to the NHS website so feeling proud of myself oxygen off at 11am and so far OK. Nebs and antibiotics full stream IV aheadBarney in disgrace again... thought what that nice juicy steak needed the next day for dessert was a buttered scone with jam and clotted cream. Hurry with the tea dad and don't drink more than Yr share, jam always makes me thirsty.

Sue

[Monkeyfeet1 in reply to Polesden11]

Barney is a clever dog!! Get better quickly and get home x