Just a rant so ignore me!

[Westcott]

15mths ago the consultant recommended having a catheter as I'm so wobbly that the risk of my falling was too great. I was happy to go along with that and initially had no problems with it. Recently it blocks after a couple of days hence it bypasses so I have to wear a thick pad which is very uncomfortable. I've asked the DNs to remove it but they can't without the consultants approval. Last wednèsday I left a message with his PA àsking him to call to give the necessary permission. When I rang on Monday to chase it up I was told he was busy on the wards. I know how busy they are but thìs is something he could scrap from his TO DO list in less than 3 mins while I carry on gettìñg sorer and sorer. Bloody consultants think they're God. URGHH.....

[Yanno]

I so understand, we constantly hear that ‘they’ are under pressure and yet they never help us to help them!!I would phone every morning and afternoon until you get a response…..seriously.

Good luck, Ian

[Westcott in reply to Yanno]

Just tried again. 'Apparently ' the poor man is working in the elderly care/parkinson team and is very busy with lots of patients! Oh that's ok then I'm obviously not ill enough to be cĺassed a patient. This is the man who's making a special study of MSA and disorganised it in the first place. His secretary (who obviously didn't have a clue what MSA is) has emailed him to call so we'll see what happens.

[Hidden]

Have you tried the parkinson team? In our area we found them useful in getting things done as they are link to the neurologist.Failing that I'd ask the GP and hope they can back up with the district team. Are you drinking enough? Flushing the bladder is quite noticeable with my husband. When he's not drinking i notice urine is cloudy and debris is visible.

Fingers crossed you get sorted. As for ranting, you just carry on. Big hugs. Xxx

[Hellebelle]

It is so frustrating when you feel you are not being listened to or ignored. I must admit, it was only when dad was taken on by the consultant at the hospice that we felt everything came together. It was a multidisciplinary team so the consultant could refer to a number of different professionals such as OT and Physio.

I have read other similar experiences on this site and it seems that their situation improves when they have a team who understand about MSA (or who are willing to learn!) and have someone overseeing your care.

I was just wondering if you have a hospice near to you or a team who deal with complex conditions? In some areas the Parkinsons team are excellent (as has been already mentioned by diverleader). Could you talk to your GP?

I really hope you get more help and understanding soon. 🙏

Helen xxx

[Yanno in reply to Hellebelle]

100% agree. Our local hospice in Worcester have always been excellent in ‘making things happen’. If they call the doctor they appear to get through quickly. Ian