FATIGUE

[Polesden11]

I'm currently ab inpatient in Carlisle infirmary with something non MSArelated and have acquired a chest infection,All the staff are constantly nagging to move more which ido understand.

I can't make them understand that 10ft is all I can walk and I can wash my hands and face but not my arms as well. Been really struggling this am in tears half thge time and feeling I'm fighting a losing battle. Our lunch looks delicious but unless someone has time to feed me I'll just have to go without coz I an too tired to do it myself.

Has anyone had any better luck than I in convincing people that I'm not merely malingering.

Suex

[ReverendBadger]

Hi Sue. The staff at the hospice understand despite only having experience of a few MSA patients. I suspect this is due to extensive palliative care work and a focus on asking what patients want. The staff also have a lighter workload compared to NHS wards.

Your hospital has a fundamental obligation to see that you are fed and watered properly so if they don't you can make an official complaint. Ask to see the senior nurse (matron?) in charge of your ward.

[Polesden11 in reply to ReverendBadger]

Never occurred to me to go to the topp dog, thanks so much

Suex

[FredaE in reply to Polesden11]

are you in contact with your local hospice???? They will liaise with the hospital on your behalf. Can't recommend hospices too highly.. Forget "in with an ambulance out in a box" which some people think -they do so much more and they do it kindly

[Frenchoak]

Hi Sue 👋 sorry to hear about the difficulties with the hospital care you're receiving (or not, as the case may be!)......perhaps ask to see or speak with someone from the hospital's PALS team....Patient Advice & Liaison Service. I think all hospitals have such teams - they’re to deal with issues as they arise; tell them all about MSA, or give them a guide book on it. They are there to stop issues arising and stop "complaints" and of course to help you, the patient 😉 😀 or if you don’t feel up to doing this yourself, get a relative, friend, or your MSA Nurse to contact PALS on your behalf to “advocate “ for you. Once you get PALS involved, then they will usually get things organised well (perhaps a hospital volunteer to help with the food problem for example), and get things moving in the right direction for you and be your advocate/advisor for your needs in hospital. Hopefully this helps. Sorry my message didn’t make sense earlier as it got posted before I’d finished it for some daft reason- probably me, pressing wrong buttons 😂 if PALS no good, then start using language like negligence, responsibility, no respect, lack of person centred care and “official complaint “!! Hard, but certain words trigger actions!! IF IN DOUBT, MORE VICTORIA WOOD……VERY LOUDLY!! Let us know how you get on, sending warm wishes and hugs 🤗

[Gill-C]

Is the one doctor who knows about MSA likely to be on shift again? You could put in a request to see him and ask if he might brief a senior nurse to cascade down? Or perhaps email the MSA Trust nurse advisor for your area? S/he might be prepared to brief a senior nurse on the phone as to the impact of MSA? Good luck!

[Polesden11 in reply to Gill-C]

Tkks Gill. I'm going to spk to Katie on monday to ask if she wld do just that as I'm beginning to think I may be here a while. I'll also get a couple of hospital packs cos if I do need surgery it'll be in a different hospital then I'd have to convales in yet another. I'm just taking one day at a time at the moment. If I look too far ahead I'll panic..Sue x

[Frenchoak]

just added a bit more to my earlier response 🤪🤣🤣