Hi Everyone this is my first post. Were to start. I have been caring for hubby since 2001 but retrospectively I think his presenting symptoms related to his cognitive dysfunction before the initial symptoms resulted in his diagnosis of PPMS. He is now unable to weight bear and in his bed most days, still with a good sense of humour.
It’s affected his communication also the ability to find the right words so it’s usually one word answers. I had CHC staff coming in nearly 24/7. (NIV machine/mask) Moved to small bungalow, after making the decision to give up work. He had become very vulnerable. Falls, letting strangers in and lonely.
I have had some horrendous times with CHC giving me an agency to use. Nightmare!! they then re-instated their staff again. We then got to the stage were no care sheets were audited or collected. No care plans/reviews were discussed with hubby or myself. Power of attorney in place since 2011. Hang on he’s ringing his bell!!
Back again. We then asked for the care staff to be removed. It’s been hard but so much better having our own space. I have asked for sit’s but they said i have to give a months notice. The nurses were coming in and they then made a decision to tel once a week!!.
April 16: I telephoned them to let them know I had called the GP, urine sepsis. They never called to see him. I then called an ambulance on 999. Lucky I did. Scanned bladder- no output. Pain in R/Kidney!!.temperature through the roof and like your have all experienced, confusion and rigors. Luckily I had got some paracetomol into him before he collapsed. Markers for sepsis high as you can get. On discharge no care plan review.
Tel CHC nurses to let them know he was home. They reinstated visits once a week. I at to telephone their O/T dept to ask for new type slings. His hips had become weaker. High risk of fracture dislocation. I at to make a Velcro strap to keep his knees together when I hoist him. No rehabilitation offered. O/T came out Aug. The slings they ordered told not suitable. Another assessment needed this month (15th)
CHC - review started by them in April 16. At the meeting I disagreed with the assessment.
Review not completed to date.
I asked CHC, MS nurse and told social worker I need respite for Robin. MS nurse sent letter to CHC. I have got them to re-instate sits so I could visit care homes and check their care home reports!!.
Carer looked after hubby. Then without my knowledge or communication a manager had visited (not aware of why or if assessment carried out. Only found out when I asked carer if anyone had tel/visited. My hubby love him, nodded but couldn’t tell me who it was!! I asked the carer and he was hesitant to tell me it was one of the nurse managers. Not written in care notes. I did record her visit that’s all I can do.
IN the mean time we have now found and visited a Leonard Cheshire Home which will take hubby at the end of the month and they will send funding request to CHC. Will see what happens!!
2nd sit.
Carer arrived with care plan. Unable to read it as I was going out. To be honest I knew it would have no bearing on what was actually the current condition of hubby. This had always happened. Then the social worker turned up and got the care plan and advised me they had written, that they had helped me access respite!!! and hubby was not incontinent of bowels, which he is. No pads or sheets given. I buy these!!!
Well everyone, I am so stressed and upset. It appears they have taken advantage so I have asked the community health board to help. I don’t know what else to do. We can’t afford legal fees so am hoping this works. The current health system is getting worse. No doubt am not the only one this happens to. Sorry for the rant, just needed to get it out there. This type of situation will only make his MS worse if I go off on one.
I managed to print off a copy of CHC framework for assessment and the guidelines for the health board. Wish me luck!! Take care all of you.