I am a carer for a 55 year old woman with MS and would like some advice.
Background: I have cared for her for 12 years now. She was diagnosed with MS about 20 years ago, I have been with her as the MS progressed.
She is a wheelchair user and is not able to use her arms or legs. She is now recently a peg feed user as she was in and out of hospital after aspirating. She has full mental capacity and is able to talk.
More recently: she is in hospital due to a blocked bowel, she has a lot of trouble with an extended bowel and at home is given Colonic Irrigation to help this.
Now: she is still in hospital as they are looking into her care package. Her care package consists of 24hr care split between three carers (one of them me) and district nurses coming out three times a day to give medication, her feed and three days a week her Colonic Irrigation. Her home is adapted to her needs with hoists in place. In hospital she is not able to have this procedure. She is struggling with her mood as she is happier at home, we are scared this is affecting her mental wellbeing. One hospital even agreed she was better off at home as she gets one to one care. A meeting took place to discuss her care plan but she was not allowed to attend.
I would like help to find out her rights and how she can come out of hospital. Sometimes she will need to go to hospital and she understands that but she doesn’t want to be held there. Is there a way of making sure she only goes into hospital when she needs treatment and then is allowed out when she no longer needs this treatment. Has anyone been in a similar situation?
Can u speak to the dr at the hospital or some citizens advice bureau. Or even the MS helpline. Im sure they’ll help you. But yes speaking to the right people helps. Best wishes x well done for caring
Sorry to hear that you are having problems, I have experienced the same sort of problems with my husband, they even discharged him to a nursing home without mine or his permission. I don’t know if you have POA (Power of Attorney) for her.
My husband can no longer communicate but we had organised POA’s for both health and finance while he could so that I can speak on his behalf. They can discharge themselves, my husband did that once but you have to be aware that they don’t like you doing that but if she is well enough to go home and you have everything in place then she will probable be better off at home. I know my husband prefers to be at home but then I care for my husband 24 /7 now. I think anybody is better off at home if there is no medical reason to be in hospital ie oxygen needed, iv drips etc.
I recently had to fight to get my husband discharged because he was taken ill while away from home and once he was off the oxygen etc they still wouldn’t discharge him to home but wanted to move him to the local hospital. I knew that there was no need for this and got his GP, District team etc involved and the hospital finally agreed to discharge to home.
It does depend if everything is in place still for her to be cared for at home and for you to be supported as I know care packages sometimes get cancelled when the person is hospitalised and then they have to arrange to restart.