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CAN ANYONE ADVICE

kez1981 July 25th, 2021

BIG RANT COMING Please can anyone advice me I receive daily care at the moment until I can get back on my feet I have other disabilities but my feet has me bedbound at the moment getting bloods and assessments to figure out why . I received a email from my care manager stating that she was told that I don't need the daily care no more that carers are coming in not having much to do so you must be going around your home . The reason why I didn't need the same care was because doctor put me on a new medication and it knocked me for six I was sleeping a lot not managing to drink or eat how I did before . Carers were aware as they kept on saying how sleepy I was I could not function keep my eyes open they told me I had to drink etc and I explained I will once I can actually see my soup as I'm no having accidents then next landing up in hospital with burns I have more than enough to deal with they agreed just you sleep it off they said . So in my email says 26th July my care will be reduced to no jugs filled of water to boil with kettle no toilet emptied no washing my cups and things I use . That I missed my care review that was planned I did text my care manager told her I had hospital appointment for my jaw and getting injections that day I said I'm sorry I can't make it we can plan another time as I've waited for a whole 6 months for this and important to me for my health. The report came back saying she had read my message so thought that bit is sorted so she never contacted me or my mum or doctors to confirm facts she took it on her own to decide my care package on word from carers to care company. So plan is Monday wash and medication left until Wednesday nothing else done then carer comes back Wednesday to give medication until Friday then back get a wash medication for weekend so I want to take this further what about my eating and drinking like and toilet tomorrow my water jugs will be empty no any support I believe that I can report neglect here as that's my health they are playing with and it's not the first time in May I had to fight to get extra care as I couldn't shower was 18 days my mum and I asked for help in my room told no and never got a explanation why so I contacted my doctor and he got me the daily care. Now taken away from me over someone thinking I didn't need care. Shouldn't my care manager contact me as I'm the sick person .I emailed her explaining why things didn't need done in my room I'm so upset feel like I have a right to say how I feel it never ends causing my mum worry happens to me because of this she's .I've been with this care company since 2014 it's now 2021 and they still play with my health I'm never listened to and I I wouldn't be getting tested for so many things if I didn't need this care and I wouldn't have consultants who look after my illnesses if it wasn't needed . She's gone on some one else's opinion and I'm the one suffering when no need I should be relaxed ,calm and happy that I'm being supported in my life but my health is making me feel sad that this is the treatment I'm receiving for things that are out my control . I was starting to accept the life I live having so much wrong with me but I don't trust the care system my faith in knowing that one day I'm going to be safe and happy with support has been crushed and the one person who can fix it is my care manager she gets the last say. I'm gathering proof for my own sanity no compassion there that's for sure I couldn't ever treat anyone like that it's wrong everyone in life will experience ill health at some point quality of life wellbeing matters .

2
AffyAvo August 6th, 2021

That's awful, and it shouldn't be so difficult to get needed care. I hope things were sorted by now.
The only advice I can offer for a situation like this is advocate for yourself and involve those who are also able to advocate and escalate the issues well for you.

WeedyGarden August 6th, 2021
@kez1981 wow I am so sorry you are having to go through that. Like affy said, being your own advocate is awesome and by all means involve others on your behalf such as drs, councilors etc. Here we have a department on Aging and Disabilities which is a great resource. You might find something similar where you are. I hope things improve for you!