Hi, we were contacted a few days ago to say my Nan has been granted fast track CHC funding to have care at home. We were extremely greatful and happy to finally have some help. The carer started yesterday and is a live in carer. But we feel really disheartened and feel my Nan’s needs won’t be met with this carer. She has no idea about MSA and there is a significant language barrier that will make things extremely difficult. Up on researching, my Nan should actually be receiving specialist nursing care because of the condition, not just any carer. My Nan is also at the stage where she is classed as palliative care now, so we have Dorothy House night nurses stay each night, which is a massive relief. Can anyone help?? We just want the best for my Nan in her last stages of life 😢
CHC fast track : Hi, we were contacted... - Multiple System A...
CHC fast track
Hi, I am so sorry you are experiencing this. There is a real shortage of carers whom have specialist knowledge of this condition. We had the same problem with my dad.
Could you talk this over with the palliative care team or a hospice? If the carers are not available, it sounds as if the carers you have could do with some more education and knowledge, particularly if your nan has swallowing difficulties etc. You could also contact the specialist MSA nurses to see if they have any advice for you.
I wish you well and send you and your nan lots of love and strength.
Helen xx
Thank you so much for you’re comment. I think we’ll try and speak to some hospices local to see if there’s any care they can provide throughout the day and hopefully can try and get hold of the MSA nurse xx
I would speak to the hospice team and see what they can advise. We're in your area and have always found the team at Dorothy House really helpful. Really feel for you, this is so hard without these types of issues. Do you have a Neuro Nurse or anyone co-coordinating your mum's care?
Hi, great news you've got the funding.First question is who has that money? If it's the Council and you don't see it then contact them and ask about who chooses the care provider as your nan has more MEDICAL needs.....
If you control the money then call the care company manager in to explain about your nans needs and potential risk to health if they are not followed.
I have found that if I control the money I can choose the care company, but it has taken me years of experience and education of the carers to get sue cared for in the way she needs. Do not assume the carers know everything, they don't and the paperwork only tells them so much.
Good luck.
Paul
Hi Paul, thanks for the comment. We have spoke with my Nan’s Neurologist today and she told us that we have to stick with the same care agency otherwise CHC will pull out altogether and she would have to pay herself. All seems so wrong in my opinion. The care agency have even admitted it was the carers first day and that the care manager hadn’t even met with this lady before. It’s just an absolute nightmare. Fingers crossed we are able to sort something out.
Thank you.
Unfortunately you will have to become a teacher as you will be the expert on nans condition as it is a rare condition. Write instructions down, create a medication list. Make a plan along the lines that if you wasn't there how would anyone take over from you, and write it down, keep updating it and keep a copy on your phone.
Well done and good luck.
Paul
Hi. Great news about the funding. My dad had MSA and unfortunately it and my dads needs took a long time to be recognised.My dad received funding, started off with 1 carer twice a day. The carer then explained to her managers that she could not lift my dad by himself. My dads muscle loss was turning him into a dead weight. He then started having 2 carers, which was a help when a hoist was introduced. With a hoist you have to have 2. Towards the end he was having no care through the night as he never moved position, as he couldn't but he did have 2 carers 4 times a day, all funded by the council.
The neurologist, kindly made one home visit when he realised my dad could not make any more hospital appointments. And then he stepped back as there was nothing more he could do. Care was then taken on by GP, district nurses, carers and emails to the MSA trust. It was all too little, too late and I sincerely hope things have improved since 2017.
Sending hugs to your Nan, yourself & family x
Hiya, thanks for the comment. Unfortunately it’s got no better. My Nan had 2 carers a day to put her to bed and to get up in the morning, but was granted the CHC funding last week, so CHC removed the current care we had and put the full time carer in. Well, what a disaster that was!!! The carer was awful, had no experience in complex needs and was very very rough, which caused my Nan to be very upset and anxious, so safe to say she didn’t even last 24hrs! Luckily there’s a few family members that have been helping out in the mean time. We were then told a new carer will be starting today, to then be told at midday today that she can no longer start because of a family issue and they have no one else experienced enough to cover. It’s just not good enough when my Nan needs 24 hour care and most of my family work all week. It’s emotionally and physically draining.
So, so sorry to hear this. So frustrating to hear that the knowledge & support for people suffering with MSA and the families does not seem to have improved!!
We did utterly love our Natalie from Dorothy House who visited us regularly.But as some one else said you need to educate any and everyone who comes to visit.
I had printed out some of the helpful sheets that MSA trust has on their website for the professionals. Also if you got emails with anyone, point them directly to their specialist area on the msa website. They are always willing to learn.
The MSA nurses are super helpful and if you can get the right Parkinsons nurse too, they are also full of help and guidance.
Just shout super loud and don't give up, just dig in. That what we had to do.
Take care and remember deep breaths and keep going <<<hugs>>>
Mum newly diagnosed with MSA-P and we are all struggling
Lost my mom to MSA
